Tyler's Blog of Life

Memorial, speeches

2012-01-28T13:04:00.000-08:00

Thank you all for coming to Tyler's Memorial last Saturday. Your presence meant a lot to Tyler's parents and I. Many of you asked for us to post the slideshow and the speeches:

Tom Allen's speech:

Thank you all for coming today. I know it would mean so much for Tyler that you
are here. Tyler knew he was loved, but he was so humble that he would never imagine that so many of you would be here. I am grateful to have the opportunity to speak about my dear friend. I have thought about this moment for a long time, and have struggled because it is impossible to put into words what Tyler meant to me. To help me, I want to read you a little from the eulogy that Ted Kennedy gave for his brother Robert.

"He gave us strength in time of trouble, wisdom in time of uncertainty, and sharing in time of happiness. He will always be by our side. Love is not an easy feeling to put into words. Nor is loyalty, or trust, or joy. But he was all of these. He loved life completely and he lived it intensely. And What it really all adds up to is love -- not love as it is described with such facility in popular magazines, but the kind of love that is affection and respect, order and encouragement, and support. Our awareness of this was an incalculable source of strength, and because real love is something unselfish and involves sacrifice and giving, we could not help but profit from it."

We are joined here in our grief, but it is our love of Tyler and our happy memories of a wonderful man that brought us all here together. Tyler was many things to us. He was a son, a nephew, a husband, a friend, and an inspiration. He was known as "grinder" for those of us who were lucky enough to witness him on the dance floor. He was a restless dreamer, tough and never broken by this disease, who loved adventure, the ocean, this American life, slurpees, the simpsons, his Cutie, and all of us.

Dennis and Yvonne, we have all come here to celebrate Tyler’s life, the life you gave him. What you have had to go through is impossible for us to understand completely. but it is clear that Tyler got his fortitude, strength, and capacity to care for others from you. The child you raised so beautifully became a man who was loved and gave immense love in return.

Eva, your strength and love saw Tyler through this. He loved you more than I have ever seen a person love another. He loved you from the day you met him, when this shy young man decided to ask out the- in his words- "hottest woman he had ever seen." He tried to win you over by telling you about his "yacht." But like the rest of us, you were drawn in by his humor, his kindness, his cool hair, and his love of life. You brought him real joy, and as I'm sure you know, you were everything to him.

We do not need to idealize or enlarge Tyler in his death beyond what he was in life. For what Tyler was, every day of his life, before and after his diagnosis was the true embodiment of so many things that all of us strive to be. A dreamer, a believer, a teacher, a friend, a lover and a son.

Even in his pain, even while submitting to the tyranny of ventilators and chemotherapy,Tyler genuinely cared about the wellbeing of others. He was a legend in the hospital: doctors would pop in just to chat with their remarkable patient. He would ask every nurse “how’s your day going”; No matter what kind of problems they were having, everyone he came into contact with realized that here was a generous and courageous young man, in a situation that none of us could possibly imagine, caring how their lives were. I see a group of people who loved Tyler. And I can say with absolute certainty that each us feels immensely fortunate that he shared his life with us. He helped us grow. He showed us courage, integrity, and strength. We are the greater for knowing Tyler and we owe it to him to expand the ripple of love that he showed us, to pass it on to both the people we love and those that we barely know.

About a year and a half ago Tyler and I took a trip to Hawaii together. During that trip we talked about how he wanted to be remembered. A couple of days after the trip he wrote me the following: " I want my story to inspire people to be better than they are. To make people think bigger than they are. To realize that we all have the capacity to be incredible individuals, and that we can get there by dedicating ourselves to being our very best selves." A couple of minutes later I got another text from him. It read: "I think I need to start living it before I start preaching it."
And that is the extraordinary thing about this man. He was so humble that he never realized his own abilities and the impact that he had on others. He just lived his life the only way he knew how, and thought he was like everyone else.

In all my time with Tyler, one of the things that I never heard him say was "Why me?" He was never angry about his diagnosis, never blamed anyone or anything. But I've struggled a lot over the last five years with understanding how this unbelievable person got burdened with this disease. It just never made sense to me, and couldn't possibly be right. But over the last two weeks, in thinking about Tyler's life and speaking with his friends and family, I have developed a theory. I have seen countless examples of people who met Tyler and in a very short amount of time, he made their lives better and from a very young age he did the same with those who have known him longest and closest. I have seen him take the worry, the anger, the anxiety, and the pain out of other people's lives and out of my own life with his indomitable spirit. So in a certain sense I believe that Tyler took all these negative things from the lives of those who were lucky enough to know him and bottled it all into this tumor in his pancreas. And that was his gift to us. Over these last five and a half years he wasn’t just fighting for himself, he was fighting for all of us.

The final thing that I would like to share with you about Tyler today is this: There have been times during the last five and a half years, where I found myself being immensely sad because I couldn't remember what Tyler was like when he was healthy. Tyler fought for so long that I couldn't remember the soccer player, the runner, the sailor and the adventurer. But a video Eva took of him made me realize that I don't need to remember those times. For up until the night that he died, he was loving, playful, curious, full of life and joy, grateful for everything that he had, he wanted to impress his beautiful wife, and show his parents how much he loved them. So when you watch this video I want you toremember, and experience Tyler's immense spirit with me. Because His spirit never changed.

Because I know he would want it no other way, please join me as I raise my slurpee for this man we all loved so much.

In Tyler's simple words: dude, its been awesome. I'm going to miss my friend, his laugh, his kindness, his wisdom and the adventures that we shared. I love you Tyler.

A Best Friend and a Brother
From Tiana Kahakauwila
Tyler and I met when I was eleven and he was twelve, at the end of sixth grade at Hughes Middle School. By ninth grade we were best friends. Together we weathered teenage heartache and triumph; we told each other our hopes for the future.
Perhaps it’s because we were both only children--and because we loved being only children—we made our friendship into a sibling relationship. We used to joke that we hated to share stuff. So having each other was the best of both worlds: We had a partner in crime but we got to keep our parents to ourselves. And like siblings, we could be competitive; we were at times brutal with our teasing. But we laughed a lot—all the time, really—and we trusted each other completely. We were also wholly honest with each other; no secrets existed between us, no doubts that weren’t admitted to, no dreams that weren’t confided.
Tyler was a huge dreamer, and he was an expert at living—long before he was diagnosed. He was a man of activity: He played the saxophone, ran, water-skied, sailed, surfed, played soccer. There wasn’t a sport he didn’t do, do well, and couldn’t talk you into trying. How many people did he teach to water-ski? Or convince to go sailing? Or zoom through city streets with in his dad’s blue Miata? Being with him was being with endless adventure. Once, in college, we started talking about how in Long Beach you can see the snow-covered mountains of San Bernadino at the same time you’re enjoying the beach. And next thing I knew, Tyler had Steve Scott and I caught up in one of his grand schemes: water-skiing in the morning and then snow-skiing in the afternoon. And somewhere in there we’d get the boat back to its slip; we’d rent skis. We’d make the two hour drive. Oh, we’d be fine; we just had to go.
Years later, when he was dating Eva, he convinced her to hike the Bridge to Nowhere, a 10-mile bush-wacking trek. Then, he said, they were going to rinse off, speed by the Fashion District in L.A. to buy her a dress, and go to the Mark Taper Forum for an evening of theater. Afterwards, they’d have an intimate dinner. And did she have anything planned for tomorrow? Because the next day they could…
Tyler needed the wide group of diverse friends he had. He needed them because he was exhausting!
When I lived in New York City he used to stop-over for a couple of days before he headed to Switzerland to see Eva. I’d get off from work and he’d be waiting outside, leaning James Dean-like against a building. Had I ever been to the top of the Empire State Building? Was the ice-skating rink open in Central Park? Did I want to try and climb on top of the bull statue on Wall Street? And then it was off to dinner—and didn’t we have friends to call? And why weren’t they up at 2am? And were we still running at 6am in the morning because he had to get to the Met when they opened… To me, the best part was that after three exhausting-thrilling-wonderful days—after which I needed four days of sleep to recover—he was off to whirlwind Eva!
In addition to being thrilling, Tyler was unbelievably charming. But it was never about him. He wasn’t charming to get attention. Rather, he was lavish with his attention. He was every nurse’s favorite; he always asked them how their day was, how they were doing. And it wasn’t just polite chit-chat. He really wanted to know, and he remembered what they said. He was like that with everyone. He had a way of positioning himself as a listener in the conversation. He asked questions. He wanted to know about you.
And there wasn’t a person about whom he couldn’t find something fascinating or intriguing. Every woman was beautiful: whether it was her eyes or confidence or elbows, he found something. And every man had the potential to be a great friend. Tyler saw humans in the best light.
As a friend, this was one of his most heart-breakingly beautiful offerings. He always saw your potential, the possibility for what you could be, while still loving you just as you were. And you responded: You wanted to be as good as he saw you, as he was.
As I said before, Tyler was an expert at living, but he saw himself as a student of life. Most of us, however, look to him as a teacher. He was, and is, a model for living. By the way he lived, and loved, he showed us how to live well and love fully. Sometimes, when I have a decision to make, I ask myself: “What would Tyler do?” How would he dive into this opportunity? How would he handle this fear? What kindness would he offer in this situation?
Tyler had long been concerned that I, as a writer, might fail to get out into the world. Years ago he told me he feared I would hole up in an attic somewhere and commit words to a page and never see the sun rise or set. I wouldn’t DO. I wouldn’t LIVE. I wouldn’t take some risks. He told me all this long before he was diagnosed. And I promised him I wouldn’t miss out on life and its adventures—and that I knew he wouldn’t let me.
This Christmas Tyler and I laughed a lot. I listened as Tyler and Eva shared the stories of how they met, fell in love, courted over years and countries and an ocean—Stories I know well and love. Stories I could hear a hundred times more, watching the two of them together. And Tyler and I were able to recount many of our best memories together, stories from more than 18 years of friendship.
At the end of Christmas break, just before I flew back to Hawai`i, Tyler told me he was proud of how I was living my life. His approval, his pride, his benediction… Few people’s blessing have meant as much as his. And few people have known me as well as he. He wasn’t just a best friend; he was my brother in every way.
When I think of how to honor Tyler—how to keep making him proud—I think of living as he did, his entire life. We can donate blood and platelets and join PANCAN (at PANCAN.org) in their advocacy. We can approach life with endless hope and appreciation. We can find joy in each day, as he did until the very last. And we can love the people in our life fully, with complete appreciation for the gift of each of them. Certainly, Tyler was a gift to each of us.

Information for Saturday's Memorial

2012-01-17T11:32:00.000-08:00

Dear Family and Friends,

SCRAPBOOK:
We were thinking of putting together a scrapbook following the Memorial on Saturday, capturing Tyler and his life through your eyes- as you knew him and as you had experienced him. Each of you will hold slightly different memories of Tyler and might have known him in a different phase of his life. We would love to capture these cherished moments for us to have as a remembrance of Tyler and his life.

We will provide scrapbook pages on Saturday and, if you are so inclined, will kindly ask you to share your favorite pictures, your fondest memories, any exciting adventures, funny stories- simply any thoughts that capture the essence of Tyler and that come to mind when you think back on Tyler.

If you have pictures that you would like to share, please bring printouts with you on Saturday.

OTHER:

1. Some of you have asked what to bring on Saturday. Basically, bring any dish that you would enjoy. More importantly though, if there is food left after the Memorial, we would like to encourage you to take home any of the leftovers. We have a hard time discarding food, which in turn, might leave the three of us with a daunting task- there is only so much running and yoga we can do.

2. Also, please bring jackets, as the gathering will take place inside as well as outside on the deck of the house. It does get chilly in the evenings, but then again, we might get lucky to be graced with a stunning sunset.

Memorial

2012-01-10T18:14:00.000-08:00

Dear Family and Friends,

Unfortunately, this is not Tyler writing, but it is me, Eva- Tyler’s wife. I am addressing you all on his behalf.

After a five-and-a-half-year long and extraordinary battle against cancer- a battle against all odds and a fight in pursuit of life- Tyler passed away in the morning of Sunday, January the 8th 2012. He went peacefully, in his home, in his own bed, next to me- the way he had wished it to be.

Not so long ago, in the confides of one of our dearly cherished “Quality Hubbily (Tyler)-Wutzily (that’s me) Cuddle Times” he told me ‘how did I get so incredibly lucky to have such loving and wonderful parents, such amazing and loyal friends, and to be married to my soul mate and the love of my life, and how did I get so incredibly unlucky with this disease?’

He treasured every single one of you, and you truly have been wonderful throughout his life and especially throughout the past years. He had a unique ability to touch people in a very special way, the way only Tyler could. It was heartrending to experience how nurses and doctors who at one time or another had taken care of Tyler would rush to his bedside when they learned he was back at the hospital. They would check on him during or after their shifts, usually breaking into tears. Again, there was something magical about him- his kindness, his gratefulness, his spirit, his love for life, and his unending optimism (to just name a few) that inspired and touched the way only Tyler could. You probably all know what I am talking about.

No words could ever describe how incredibly fortunate I feel to have been part of his life and that he had a special place in his heart for me. His loss leaves behind a gaping void- a hurting reminder of his passing. Life for me, and the rest of us, will never be the same. Again, and as so often in the past, I turn to Tyler for help and remember what he had told me in the ICU. We were filling out the Advanced Directives, which was incredibly difficult to do, and he took my hand, looked me in the eyes and said that everything would be okay… I would be okay. When the time came for him to go, the very second, he would take place on my shoulder, he would be with me- wherever I would go, for the rest of my life. Though nothing could ever replace him and he most certainly went too soon, it gives me a little solace to know that he is with us and always will be.

To that end, we will be holding an ‘Open House’ in honor and loving memory of Tyler to come together as friends and family to share stories, memories, and support.

Date: Saturday, January 21, 2012
Where: Tyler’s parents’ house. 1901 West 35th Street, San Pedro, CA 90732
Time: 4 pm

Other 1: As Tyler and I enjoyed potluck style parties (we kept up the tradition from our wedding until this past New Year’s Eve celebration) we encourage you to bring something to share (not required though).

Other 2: Yvonne, Dennis, and I will leave for Hawaii tomorrow and won’t be back until Tuesday.

Other 3: If you are so moved please learn more about pancreatic cancer at pancan.org, donate blood and platelets at your local blood bank, hug your loved ones, and pray to experience a life as rich and full as Tyler’s.

Remembering Tyler, the love of my life, a wonderful son, a good friend to many

Tyler, early in December 2012- what a spirit he had...

Tyler on Christmas Day 2012 decorated with a bow- what a good sport he was...

You will be missed so much...

Official Obituary by Dennis, Dad

2012-01-10T18:13:00.000-08:00

Tyler Mark Noesen
4/23/81 - 1/8/12

Dream as if you’ll live forever. Live as if you’ll die today.

Tyler Noesen died of pancreatic cancer after a 5 1/2 year battle. He died peacefully at home with his loving wife the morning of Sunday, January 8, 2012.

Tyler was raised in San Pedro and schooled in Long Beach. He attended South Shores Elementary, Longfellow Elementary, Hughes Middle School, and Poly High School. As a child he played baseball and basketball at Bogdonavich Park, roller hockey and indoor soccer at the Lakewood YMCA, and soccer with San Pedro AYSO and Long Beach United Soccer Club. He played the saxophone in the Poly band.

He surfed, scuba dived, water and snow skied. He loved Catalina. He was an Eagle Scout. Tyler ran cross country and track and was the 1998 Moore League individual cross country champion, but more important to him was that he contributed to three state high school championships. He was an International Ambassador at Poly.

UC Berkeley was his college, graduating in 2003 as a mechanical and materials science engineer. He ran in college, living in the “track house,” which was “like a fraternity, only dirtier.” Tyler spent one summer on a fishing boat in Alaska. He was employed by Raytheon Corporation for 10 years as an engineer in the DPA (Destructive Physical Analysis) department. Tyler was interested in national and international politics and his recent reading list and dream was to be a Foreign Service Officer.

Tyler met Eva, the love of his life, at Cal in 2002 (she was from Switzerland). They were kindred spirits: traveling, competing, and living life as an adventure. They married in 2006. Despite his profound disease, Tyler’s last years were full of fun, laughter, friends, travel and joy. He is survived by his wife Eva, his parents Dennis and Yvonne, and many uncles, aunts and cousins. Read more about Tyler at tnoesen.blogspot.com.

If you are so moved, please learn more about pancreatic cancer at pancan.org, donate blood or platelets at your local blood bank, hug your loved ones, and pray to experience a life as rich and full as Tyler’s.

Carpe Vitam and Live Strong

LA Cancer Challenge 2010

2010-11-17T23:12:00.000-08:00

The LA Cancer Challenge 2010 was a huge success. Thank you so much to all the wonderful people who made it happen. Thanks to the front runners who lead Team Tyler to a 4th Straight 5K Team Championship. Thanks to everyone else who came out who made Team Tyler the force that it was. Seriously, everywhere you looked, you would see someone in a Team Tyler shirt. Thanks to everyone who supported us from afar. Your positive energy helped more than you will know. Thanks to everyone who gave money to fight pancreatic cancer. Your generosity was really touching. Finally, thanks to everyone who walked in the back with me. It sure did feel like a long 3.1 miles but I was stoked I made it and I owe so much of it to all of you keeping me company and chatting me up and really carrying me through it. A lot has happened since the last race - foot drop, AFOs, strength improvement, extensive neuropathy, walker, wheelchair, walker, gradual improvement, a couple minor surgeries, more strength, and finally a cane- and I really didn’t know if it was going to happen. You guys got me through. Well done.

As far as the team, we took home the 5K Team Title again and we had an amazing “official” 71 Team Tyler members and many more people actually on the course and supporting from home.

We raised over $8,000!! That is awesome and will certainly help pushing research forward. Particularly impressive considering the current economic climate.

And while those were no small feats, I think the highlight of the day for me was seeing so many old and new friends and getting to talk a bit with so many of you. It was a really fun day and I really treasure every fun day I get. I wish I could have spent the whole morning with each of you but there just are not enough hours in the day. Thank you for being incredible people.

One really sweet woman introduced herself after the race and said she had joined Team Tyler because she had come across my story on the Pancan website. She didn’t know any of us but it looked like she was just another one of the gang. Pretty cool.

Shannon came through fabulously with some awesome jerseys and Big Dennis and my dad made adorable kiddie Team Tyler shirts and some classics. Actually, I am pretty sure our edge was the few small children and dog that were a part of the team - essential ingredients for any feel good story. I think it is safe to say that we were the most stylish team out there.

I do have to apologize, though. I was a big idiot at the end of the race. After walking together for over an hour and a half, everyone was kind enough to let me go a step ahead as I crossed the line, after which, if I was a considerate individual, I would have turned around and thanked everyone for getting me through it. As it happened, I just kept walking, got my medal, posed for a quick pic, and then went straight back to my chair by the tree. Sorry about that. I was just stupid and tired and basically dreaming of my chair. Just know that I really did appreciate everyone one out there.

People who are better at sharing pictures than me have been sending me some wonderful shots and I have put them up in a mobile me gallery that you can directly add your photos to. Please upload your shots and feel free to download what ever pics you want to. I will try to keep a bit of order but I’m not always the most reliable. I am looking forward to your pics. Becky and Mike Sanders got us started out very nicely. Here is the link

http://gallery.me.com/tnoesen/100053

If pics are already in your email, you can just forward the email to
tnoesen-3zhq@post.me.com
and they will get added automatically.

One last little treat. Natan put together a video of the “race” which a lot of you are in. Well done Natan. Disclaimer: just know that I walk very slowly. It is just my speed right now. It was 7 minutes faster than last year and only 78 minutes off my PR. The video is up on his wall on facebook.

Again, great job everyone. Take Care and Live Strong.
Tyler

 

2010-10-18T22:22:00.000-07:00

Well, its that time of the year again. LA Cancer Challenge and Pancreatic Cancer Awareness month are right around the corner. Sorry for the late heads up this year, as usual I have neglected the blog mostly due to me feeling pretty well and being really busy.

It is less than 2 weeks until the LA Cancer Challenge 5K/10K run on October 31st at the Veteran's grounds next to UCLA. The 10K starts at 7:30am and the 5K starts at 9:30am.

If you are free, please come out and join Team Tyler and support pancreatic cancer research.

We have taken the 5K Team Title the last 3 years and are looking for another. All ringers are welcome and any donations will be going to a very good cause (at least in my opinion, though I may be a little biased). Past donations have led to UCLA being designated as a comprehensive pancreatic cancer center and also funded a study performed by my endocrinologist which was published earlier this year. Pat yourselves on the back as your donations are helping us to make steps in the right direction.

Healthwise, I have been doing pretty well. I had a biopsy done in July where they could not find any malignant cells on the chunks they took. That was very encouraging though it by no means puts me in the clear. Less encouraging has been that my CA19-9 marker has slowly been going up. It is hard to say what all this means. I will probably be going for a scan soon which may clarify things a little more. I hope not, but I realize at some point I will probably have to go back onto chemo. Luckily, this long break has allowed my body to recover a lot. Some things have been coming back, like the nerves in my legs, while other things will probably never come back, like my kidneys. That is just how it is. I generally feel well and my energy is pretty good these days. Dialysis has been tolerable and the center has actually been pretty good experience this time, though I have found it hard to accomplish anything meaningful on Tuesdays, Thursdays, or Saturdays. I just cannot think like I would like to during treatment and often feel very wasted after treatment. To try to address this, and get back 3 days of my week, I have been transitioning to Peritoneal Dialysis over the last few weeks. Instead of your blood leaving you body, going through the artificial kidney and returning like Hemo-dialysis, Peritoneal dialysis is performed by putting fluid into your peritoneal lining (the sac that holds your guts), letting it sit there for a while, drain it, and repeat. The peritoneum has enough little blood vessels that can act as a membrane similar to a kidney and a little sugar water draws the fluid and toxins out of you and makes it all happen. After some training and trial runs, I switched last Wednesday. So far so good though there are always a few kinks to work out and it takes a little getting used to to have an extra 2 liters in your belly all the time. What sold me was the mindset that the two modalities operate under. With hemo, you are told to be in your chair at your time every Tuesday, Thursday, and Saturday and you spend a lot of you time there. With peritoneal, the nurse (a great guy named Joe) asked me what I would like to do during my day and week and then he tried to come up wit a schedule that would work around that. What a concept! We will run some tests in a couple weeks to see if this will work for the long run. Sometimes, people's membrane transports too fast or too slow and it just is not possible. Here's to hoping my membrane is goldilocks.

Aside from transitioning to PD and also working, I managed to get out of town for a week and a half to Hawaii. It was the first trip I have taken just to take a trip in a long time. Sadly, Eva had school and could not join me. As amazing and gorgeous as Maui and the Big Island were, the best parts of the trip were spending time with some great friends, Bubba, Tom, and Elizabeth. Bubbs and E, thanks for putting Tom and me up and for being the amazing people you are. It was a lot of fun. Here are some highlights.

Well, I hope to see all you at the race on the 31st and I hope that everyone has been doing well. It is still infrequent, but I do update facebook a little more often than the blog and I would love to be friends.

Take Care and Live Strong,
Tyler

DC and Virginia, Part 2

2010-07-06T22:51:00.001-07:00

Thursday morning, my folks, John B., and I drove down to Richmond. On the way we had lunch right on the rivers edge in a tiny little town off the highway. I thought it would be a good way to get into the feel of the south by eating outside in about 95 degree heat with about 85% humidity. It has been slowly getting better, but ever since my thyroid was a little off in January, I have almost always been on the cold side, but this was hot even for me. After about 20 minutes, I started grabbing ice cubes from my drink and melting them on my forehead. The heat certainly slowed our pace down quite a bit. The only other time I had been in the south was when I went to the Texas relays in high school and I was really excited to get another taste of that part of the country. From everything I have seen and heard, it has a very unique character, and while some might focus on the negatives, I was hoping to experience some of that famous hospitality, history, and pace of life that, in my opinion, can add a lot to your quality of life. I was a little bummed that our waitress did not have much of an accent but, otherwise, lunch did not disappoint.

That evening, we got settled into our hotel and then Alex’s parents hosted Hor d’ourves in their suite. Lots of out of town guests had come in and were staying at the hotel and many came by to mingle a little that evening. It was wonderful to see Amy and Alex and they looked just like the happy young couple that they are. Both of their parents were really nice and made John and I feel right at home. I found a nice couch to park myself on and ended up talking to just about the sweetest little old lady you could imagine. She was a friend from Amy’s church. When she sat down, someone handed her a drink and, with the heat still in full effect, she took a gulp and then made this expression that was to die for. She was expecting lemonade and got white wine. She laughed and resigned herself to the wine until she saw John open up a nice frosty beer. I could see that she was eyeing it, and then she asked if she could have a beer and I traded John her wine for his beer. I had never seen such a cute little old woman look so longingly at a Heineken. My father used to keep beer in my Grandmother’s fridge and one time she accidentally grabbed one when she was trying to give Harry a Coke. He took a sip and made a sour face and said, I don’t think this is Coke. My Grandma said sure it is and took a sip. Well, down the drain that beer went. Now here on my left was someone who was just as adorable as my Grandmother, sipping away on a beer just like the trackhouse guy on my right. Awesome. Between her and a few other guests I got my accent fix for the night. I don’t know what it is, but I could listen to that southern drawl for hours.

On Friday, a bunch of the guests went for a run in the morning and I went out with my folks to see a little history. Hollywood cemetery is right there and we took a little drive through. A few of the notable people resting there were James Monroe, John Tyler, and Jefferson Davis. They also had a confederate section which really brought home the power of the civil war. No doubt that human subjugation is evil and wrong, but like any conflict, even the “villains” are human beings. It seems to me, a lot of the impetus for war was the reaction by southerners against being told what to do by outsiders, the north. Again, slavery needed to end, but I also understand that reaction. I don’t like to be told what to do. Maybe we should take that into consideration when find ourselves on the other side of the world trying to do good. Alright, enough ranting for now.

Later, my folks and I went over to the Fine Art Museum, which had a pretty impressive collection of faberge eggs and then back to the hotel for a nap before the wedding.

It was an evening wedding at the Botanical Gardens there in Richmond and, thankfully, it had cooled off a good 10-15 degrees and the humidity was down a bit, too. It was a lovely ceremony with the sun going down behind the couple making them glow a little like angels. Kenji gave an awesome poetry reading. More animated than anything I had ever seen before. Alex and Amy exchanged very nice vows and I was really impressed that each delivered some pretty extensive vows flawlessly under a decent amount of pressure. I think I would have cracked. I could barely get out the sentences that the pastor had said just a moment before. The whole multi-day wedding celebration was so well thought out and was a credit to the time and energy Alex and Amy put into planning these few days. I am sure it will be a reflection of the time, energy, and dedication that they will put towards their marriage. Even the local honey in the cloth gift bags (made by Amy) was given in 3 oz. jars to insure that guests traveling by plane would not have to forfeit their honey at the security check-point. As an engineer who is usually the most detail-oriented person in the room, I was not even in their league. Well done, Alex and Amy, well done. After the ceremony, the reception was right there at the gardens and everyone seemed to have a really good time. I heard a lounge version of “Baby Got Back” for the first time during dinner and was again impressed by the couple’s dancing skills for the first dance. In the twilight after the sun had gone down, the fireflies came out and it was really pretty magical. I had not seen fireflies since I was a kid visiting my Aunt Zel in Chicago and they just put a smile on my face. All in all, an amazing evening.

On Saturday, I dialyzed in the morning (and waited an hour and a half to get onto the machine for a four hour treatment) and then cruised over to a pool party at Amy’s folks house. I would have liked to have had more time hanging out but it was still really nice and I met some wonderful people from both Amy and Alex’s various groups of friends. That night we headed back up to DC and crashed near the airport for our early flight the next day.

I spent the next week recovering from the trip, dialyzing, and trying to get my hours in for work. Tiana and Mike V. were in town and I hung out with them a different times during the week. Thursday was game night at Tiana’s and Ross and Ryan G. joined Mike, Tiana, and I for some fierce board game action. Mike V. turned out to be the railroad baron we all knew he was and took home victory at Ticket to Europe. On Saturday, Tom A. and I headed down to San Diego to see the Coffees and extended family. It was a mellow and nice 4th of July and really good to see Chris, Katie, and little Vincinzo. He turned 1 year old yesterday on the fifth which also marked 4 years since diagnosis for me. It was really good to be around Cinzo and I was so thankful that Chris, Katie, and the rest of the family really made Tom and I feel as part of the family. Seeing, holding, and interacting with a 1 year old did more for my soul than I think any support group ever could have. He was so full of life and so amazing I could not have imagined a better way to spend the day. Late in the night of the fourth, I had a couple shots of tequila, which was the first hard alcohol I had had in a long, long time. I took 1 for the 4th and 1 for the 5th. In the evening of the 5th, Cinzo had his birthday party in Old town San Diego. I think there were more than 30 people there for this little guy’s first birthday. What can I say, he is a popular guy.

It has been a busy few weeks. I am hoping to recover a bit for a while and just dialyze, work, and sleep. I hope all of you are doing well. I finally caved and joined facebook a few weeks ago and have found it to actually be a pretty cool thing. I still think real interaction is better but it has been nice to reconnect and is enjoyably addictive. It may also be a good way to follow my updates as I am not the most consistent blogger.

I hope everyone is pulling for Lance.

Take Care and Live Strong,
Tyler

Advocacy Day 2010

2010-06-29T00:35:00.000-07:00

DC and Virginia, Part 1

Last Sunday I left for the east coast for what ended up being one of my favorite trips in a long time. There were two main parts. The first half of the week, we (my folks and I) were in DC for Pancan’s Advocacy Day where people from all over the country come together to raise awareness and push for funding for pancreatic cancer research from the government. The second half of the week, John Burke joined us and we all went down to Richmond, Virginia to celebrate Alex and Amy’s wedding.

DC

I love DC. It is such an amazing city. Monuments, museums, agencies, and NGOs all just fascinate me. I get excited when I walk by random institutions like the Social Security Administration offices, or the State department, or the Humane Society. I just think it is cool to see the physical buildings where people work on programs that affect all of our lives. Amusement parks, meh. Huge government bureaucracies, awesome. We did not get to do too much sightseeing, but just getting to the places you need to go, you end up passing by some pretty amazing places. I know not everyone gets excited by these sorts of things but it just speaks to me.

Monday was spent training on how to lobby by Pancan. They go over the dos and don’ts for lobbying. Like do tell your representative that you are a constituent and that this issue matters to you. Don’t tell your representative that you think he is a jackass or that you won’t vote for him unless he supports the legislation you are pushing for. Pretty straightforward. JB Jaso signed up and we met up in the morning sessions. It was great to see JB and catch up over the next two days. He is really an amazing guy and I could not believe that it had been 10 years or so since we had last seen each other. We both have been through a lot and it was nice to talk to an old friend who really knows where you are coming from. He is also a great lobbyist, an awesome addition to the cause, and just a fun guy to be around. Sometimes, these gatherings are a little tough for me. Most of the time I generally live in denial of my disease and am just a happy, optimistic guy, but these events put the cancer front and center. Of the 450 or so people who came to DC this year, only a handful are survivors. The vast majority of people have lost someone to pancreatic cancer and some have lost more than one to this disease. Having JB around just made the few days easier to bear. I also got to spend some good time with Chris Calaprice, another young survivor. He is a cool guy and we can commiserate on issues that only a very few people will ever fully understand. Stuff like survivor guilt or dealing with the constant worry that ours lives are much more fragile than most. It was really nice talking to both guys and they really helped make the days positive and enjoyable.

Chris Calaprise and me in the Hart Senate office building. You can follow Chris' amazing crusade to spread awareness of pancreatic cancer at road2acure.org.

One of the obstacles to travel these days is dialysis but I had set up everything in advance and dialyzed in DC Monday afternoon. I kind of like dialyzing in new centers to change things up a bit. Of course there is always a little more stress with a new situation but things generally go fairly smoothly. JB joined me for the second half of my session and before we knew it, time was up and I got to go back to the hotel. The people working at that DC facility were very nice and pretty organized.

Tuesday was the big day. We had a pep talk by Jai Pousch (Randy Pousch’s wife, the guy who gave and wrote the last lecture) and her three young children. Pretty good send off.

Jai Pousch, my folks, JB, and me in front of the capital building. Her three kids are out of the frame but adorable and full of energy.

This year my group ended up meeting only with staffers, not the actual representatives but I think that your cause may end up doing better if it is communicated to the actually representative by a trusted staffer. The usual game plan was for me to tell my story, then another group member would tell their story, then someone would go over some statistics, and finally, someone else would present the ask (support HR 745 and SS 3320 and support an NCI budget of 5.79 billion for FY 2011, I think). My group had meetings with staffers from Mary Bono Mack’s office and Dana Rohrabacher’s office and they went pretty well. The team worked really well together and I was really stoked on how well everyone did. I think we made a pretty convincing case. Later, we heard that Mary Bono Mack co-sponsored HR 745 which was a big step in the right direction. After those meetings, I made my way to the meeting with my representative, Henry Waxman. Representative Waxman is sort of a personal hero to Eva and I and sometimes we think he is one of the few congresspeople that is actually supporting the average citizen. He is the one who recently gave a bit of a tongue lashing to CEO of BP, Tony Hayward. I love when John Stewart plays clips of him on The Daily Show or impersonates him with a mustache taped to a pencil. We had our meeting in his sub-committee room and I think/hope we communicated our cause to his staffer. He is very important because the bill would most likely originate in his committee but that fact may also be the reason that he will not co-sponsor it. He takes a principled stance and never co-sponsors bills that originate in his committee, which makes sense as it is a bit of a conflict of interest. I respect that stance and think that more people should take a real honest look at themselves and various conflicts of interest they may be involved with (MMS and big oil just as an example). I just hope that he brings the bill into the committee if we get over half the total congresspeople to co-sponsor it.

Later in the day, the Rep. Waxman’s staffer showed us his big committee room where the hearing on BP took place just a week or so before. It was really cool. Simple and governmental yet powerful. JB, my folks, and I got to sit in the congresspeople’s chairs. Awesome.

The staffer was sitting in the hot seat when she took this photo.

The rest of the day we took a group picture, had lunch, and then met with aides from our senators offices. It was a long and tiring day but the cause itself gave me a lot of energy. Who knows if we actually influenced anyone, but just being on capital hill, walking/wheeling the halls of power was energy giving for me. By the end of the day I was all fired up and just wanted to keep meeting with people day after day. I realized last year, and felt the same this year, how patriotic I am after this event. I am pretty patriotic most of the time anyways, but after seeing the access that anyone willing to walk through a metal detector can have, I am pro America and pro democracy like no other time of the year.

On Wednesday, I rested and recovered from the day before. In the afternoon I had dialysis and John Burke met us at the center. After my session, we went to dinner with another old friend, John Collin. It was a great dinner and great to catch up with old friends. John B’s research in England is going well and John C’s work on The Real Housewives of DC is coming along, too. I think my dad and I are going to tivo the show to see a little of John C’s work. Who knows, maybe my father and I have been missing out on all these reality shows for the last decade and will find that, deep down, we really enjoy them.

On Thursday, we headed down to Richmond...I will continue later in the week with Part 2.

Thanks for everyone who called in on Advocacy day as part of the national call in. Every call helps. Thanks to everyone who made the trip and lobbied in person in DC. Every person helps. I am so sorry for everyone who has lost someone to pancreatic cancer. I hope our efforts give you some comfort, however minuscule, that maybe we can change things for the better some day.

Take Care and Live Strong,
Tyler

Advacacy Day

2010-06-22T05:15:00.000-07:00

Just a reminder, if you have some time today, it would be awesome if you could call you representative and senators to push for pancreatic cancer research funding. All the info is on Pancan.org and click on the National Call in Day link. Tell them that you support senate bill 3320 and house resolution 745. It's a great way to help the cause without even leaving your house or giving any money. Otherwise I hope everyone is doing well.

Take care and live strong.
Tyler

2010-06-18T12:49:00.000-07:00

Well it has been a while again. I hope everyone has been well and keeping busy. OK, a couple items of business first.

1. June 22 is PANCAN’s Advocacy Day in Washington DC. If you have extra miles we would love to see you in DC (try to show up for the training on the 21st, too) but if you won’t be making the trip, you can still help in a big way. You don’t even need to leave your house. It would be awesome if you all could participate in PANCAN’s National Call-in. All the information is on pancan.org under the national call in heading. You will need to fill out a few web forms and then they will tell you who your senators and representative are and how to contact them. In addition to calling your own representative, it would really be helpful to me if you could call my representative, Dana Rohrabacher. He was a little tough to convince last year. Feel free to say what you want, but maybe you could mention that you are a dear friend of Tyler Noesen and that you fully support pancreatic cancer research funding. The more people who call, the bigger impact we will make. I know some of you have a lot of facebook friends and I am just making sure that everyone knows that they are totally welcome to call my representative and give him their 2 cents. It should be fun. This is democracy in action.

Here is Dana Rohrabacher’s info...

His Washington DC office number is (202) 225-2415.

His Huntington Beach office number is (714) 960-6483.

If you have the time, it would be great to call both numbers. Not to get your hopes up, but you probably won’t actually speak to Rep. Rohrabacher. You will probably speak to a staffer but that is just as good. They will pass the message along.

2. My old neighbor and friend, Dean McCollom, is doing a cross-country bike ride and is blogging along the way. You can follow his journey at

www.crazyguyonabike.com/doc/LemonadeMagnate

If you find yourself in a town as he is passing through, call him at 831-239-4118. I am sure he would love to share a meal and some stories.

3. Next week I will be in DC (Jun 20-24) and Richmond, Va (Jun 24-26) so if you are in the area, I would love to meet up and catch up.

Anyways, I am just plugging away as usual. Again, great comments. You guys rock! I really enjoy reading them. The bulk of my time these days is spent working and at dialysis or other medical appointments. After getting out of the hospital, the neuropathy in my legs did get worse for a few weeks before slowly starting to improve. I have been in a wheelchair since about March and it has certainly been a challenge. For a while, even the simplest tasks were exhausting and/or impossible without being able to stand on my feet. After being stumped for a while, I slowly started to figure out how to accomplish little tasks in the chair and recently, I have regained a decent amount of independence. For example, for about a month, I was essentially trapped within my building unless I had someone to help me out. There are two stairs and a pretty high curb between the door to the building and the street and no handrail which pretty much made it seem impossible for me to leave on my own. Eventually, I thought about it, and figured out how to accomplish this simple task. I open the door, transfer from my chair to the ground, scooch on my but down the stairs as I pull my wheelchair down the stairs next to me, put my chair into the street, and transfer back up into the chair. By the time I had figured out this sequence my arm strength had improved, which really helped me get in and out of my chair. Over the last couple months I have also learned how to use hand controls (which we had installed into our Prius), how to cling to the side of my car to get from the driver’s seat to the trunk, how to get my chair in and out of the back of the car by sitting on the back bumper, and how to go up or down a flight of stairs with my wheelchair (again using the scoot on the butt method) to get to the parking garage in our building which is between floors that the elevator services. While these are very useful skills to get around while being impaired, mobility-wise, I have also gotten pretty good at doing wheelies and really have a lot of fun showing off from time to time.

Recently, the nerves in my legs have started to regenerate and my leg strength is starting to come back. I can get around decently with a walker these days and have even started trying out a 4-point cane at physical therapy (with a support belt and my very strong physical therapist with his hand on my back ready to pick my up if I start to go down). It has been very nice to be able to stand a bit without my knees immediately buckling. I still don’t really have any calf strength and cannot really stabilize myself very well, so when I do walk a little (between the parallel bars at PT), it looks like I am a bit of a drunkard.

Otherwise, things are going pretty well. I had a fun day at the butterfly pavilion and IMAX in Exposition Park with Nate and Becky last Sunday and had dinner with my physical therapist, Jafari on Wednesday. The folks came over for the Laker game last night (Go Lakers!) and I am looking forward to my trip next week. Eva is doing well and is in Chicago for the summer, interning at Abbott (who manufactures Synthroid, which I am on, and a few other drugs I have been on in the past). Seems like she is working with nice people and that they are taking good care of her. It will be tough without her for a few months but the timing worked out pretty well as I regained a lot of independence (like driving myself places) right before she was about to leave. Sometimes things workout pretty well.

I hope everything is going well for all of you and if you have the time, a few phone calls would be greatly appreciated next Tuesday.

Take Care and Live Strong,
Tyler

April 4th, 2010

2010-04-04T23:17:00.000-07:00

Well, done everyone. I really like the banter in the comments section. Thank you all so much for contributing. I liked the support as well as the skepticism. Eva says I better be careful or else this blog will turn political real fast. I guess that is just one way that I have changed during this journey. I always thought pretty much along these lines, but the urgency and depth with which I hold my views has certainly increased. Again, I really enjoyed hearing different peoples thoughts and concerns. It is so important to be vigilant and really look at the world around us. If we do not keep each other honest, the system falls apart. That said, the more I look at the healthcare bill, the more I like it. In fact, I would prefer a number of provisions were enacted sooner. Regarding earmarks, I totally agree that so many are a waste of our tax dollars and some are basically institutionalized bribery, but remember, one man's pork is another man's midnight basketball league, or city beautification project, or free clinic. Often earmarks go to legitimate and beneficial projects. One drawback I see, is that some of the best projects are only funded in one small district. Though it is good to test pilot a project before implementing the more broadly, it would be nice if maybe we picked a few projects that were working well and funded them for everyone. Please correct me if I am wrong, but though the senate bill did have some special deals to get the votes of a few wavering senators, the reconciliation package removed those special deals and generally expanded medicaid for all states. Anyways, another little comment that got me thinking was Aunt Donna's. If she is arguing with her grandsons on Facebook, what am I? A social networking Neanderthal? That made me think that I may need to increase my online presence a bit. We will see if I have the courage. Just to stir the pot a bit, I thought that I might point out that for those of you who enjoy Medicare, you are living the socialist single payer system and loving it. Are those red stockings I see there comrade?

Just a heads up. In June, Pancan is going to do it's lobby days thing where a bunch of cancer survivors, caregivers, and friends all go to Washington DC and lobby for more funds for pancreatic research. I went last year and was really glad I did. It was really cool to see the inner workings of government. I am hoping to go again this year but it is always a toss up with my health. It is a long trip and it can be expensive, but if you have the time and the money, it is a great way to get involved. If you are lazy, like me, you can do a year's worth of awareness raising in one day (ok, two days with training). The more people from different locations, the better, because then we will get to meet with more different representatives. Just know going in that I will probably be in a different group as they are usually only about 5 people or so in each, but anyone who goes on my behalf can join me in my room for a little post lobbying medicating. All the details are on Pancan.org, just look for the Advocacy days link.

Well, other than these little political firestorms to fire me up, my life is pretty mundane at the moment. It is probably good, though, because I don't really think I have the energy for much more than I am currently doing. I have just finished my 6th week back at work (only 20hrs/week). Other than work, I dialyze three times a week at Ucla. Most of the rest of the time I sleep or nap or doze. I do not know what has happened but my energy has really fallen off over the last couple weeks. We have been trying to get labs but the unit has not been able to accomplish this. In the hospital, I had labs drawn everyday, and often got the results the next day. In the three weeks since I was released, I have gotten no lab results. We took labs, after I repeatedly asked to take them, and somehow they have been lost in the system. I'm currently not very pleased with the dialysis unit. Most of my sessions have been smooth but I had a rough one last Tuesday. The machine ended up clotting and I lost a bit of blood and just felt crappy the rest of the day. I was particularly agitated because it could have been avoided had the care partner been up to the challenge. Being the control freak that I am, it has been hard to have my well being out of my hands, especially after doing everything at home for so long. I am still doing really well and very thankful for my current condition, but it has been hard recently to keep positive. It just seems like everything is hard. Just little things, like putting socks on, or pulling my pants up, or getting a bowl of cereal, or going anywhere. I feel bad that I cannot really contribute to keeping the apartment clean or in order and really use a lot of my energy just to keep myself somewhat clean. For those of you who loath doing laundry or vacuuming, think for a minute about not being physically able to do it. It may sound nice at first, but it really is not the lazy utopia you may be envisioning. It is a constant battle in my head but I really try to appreciate the fact that at one time I could run, surf, dive, fly, waterski, hike, sail, dance (sort of) and do almost anything else I set my mind to. I tell myself that I was lucky to have been able to do those things at one time when so many people never even get the opportunity to, but it is hard not to feel bitter that those abilities have been taken away (hopefully temporarily). This disease, and especially the treatments, have taken a toll. I will certainly keep fighting, but it is getting tougher and tougher and has been wearing me down for a long time.

On a lighter note, one thing that keeps a smile on my face is a new toy. I feel incredibly fortunate to have been amongst the first to get an iPad. I had been looking forward to this for quite a while and after playing with it for a couple days, it is pretty sweet. I was talking with Eva and we both agreed, no one really needs an iPad, but, that said, I think everyone should have one. It is just a really cool way to interact with your computer. I loved browsing the web on the iPhone and this is even better. You see a link, you touch it, you want to zoom in on a picture, you double tap it, want to scroll up, flick the page up. Super intuitive. You can watch movies using the watch instantly feature from netflix or watch your TiVo with a sling box. Alright enough shameless Apple promotion for the time being. All in all, it is a pretty cool toy that should keep me occupied for at least a week or so.

Take Care and Live Strong,
Tyler

Health Care Vote Tonight 3-21-2010

2010-03-21T21:26:00.000-07:00

I was a little fired up when I wrote this. Forgive the proselytizing.

I am writing today as an advocate of the health care reform bill that is being voted on in congress today. At this point, it is looking like the Senate bill will be passed by the house and then reconciled once the president has signed it into law. Wow, what a process it has been. I have personally been both inspired and horrified by the legislative process and people on both sides of the debate. I cannot believe how hard it has been to get to this point. I guess I just don’t understand. There seems to be widespread suspicion of the government these days I and I just do not get it. Maybe I am naive, but the government has done right by me during my hour of need. The safety net that we have and are fashioning should catch you on your way down, not restrict you on your way up. I think the health care legislation is another step in strengthening the net so that our most vulnerable are not forgotten. I feel that the character of a society is shown by how it treats its most vulnerable citizens. Do we feed our poor or merely look down on them for not being able to provide for themselves? Do we help our disabled or mock them? Do we detain our convicts humanely or starve them in squalor? How we treat those less fortunate than us, reflects back upon us. Again, I feel that the sacrifice we all will make to extend health coverage to nearly all Americans is miniscule compared to the enormous benefit individuals (and the rest of us) get by being covered and the nation gets by raising its moral standard. Today will, hopefully, be the day that the richest nation on earth finally decided to look after all of its citizens, rich and poor. You personally may not experience a medical bankruptcy, but you could, or someone close to you could. Ask yourself, how much is it worth to you, to have the security of knowing that medical bankruptcy will not happen to you or a loved one. That piece of mind is worth a lot to me. Many times more that whatever small tax increases, if any, I will bear.

Of course, I have a very unique perspective and, like anyone, have my own personal biases. I welcome all comments an criticisms, especially those who disagree with me. Perhaps concerns can be posted and I can make an attempt to alleviate them through the comments section.

Anyways, enough lecturing. A quick update on my health...My leg strength has continued to degenerate and it is pretty tough to get around these days. I spent a week in the hospital to try to figure it out and it looks like chemo initially damaged the nerves and then they were damaged further when I worked out while my creatanine was too high because I was not getting enough dialysis. Solution: dialyze more and wait for the nerves to regenerate (which hopefully they will). It just takes time, lots of time I am told, like months. We are figuring things out slowly but it has been tough. Few of the places I frequent are really wheelchair accessible. It is not that they are accessible or not, but it is more of a spectrum. Some places are easier than others. UCLA is fairly good. My apartment, not so much. My parent’s house, good in some ways, less so in others. For instance, there are only two small steps to get into my parents house, but the bathroom doors are not standard and my wheelchair will not fit through them. My walker will make it if I go sideways, but it is a little tricky. It has also been straining emotionally to be so dependent on Eva and my parents. I feel very dependent and it is also hard to feel so helpless if someone accidentally puts your walker just out of reach. Ok, I could crawl to it, but then how would I get back up on my feet once I was there. I would have to crawl back to the couch or bed, dragging the walker, try to get up onto the bed, and then try to get up on my feet. Everything just becomes that much harder. One victory yesterday, was figuring out how to shower at my apartment. There are no bars to hold onto and the lip for the shower is about 12 inches high. I can barely lift my foot 12 inches, let alone balance on one foot while I step over the lip into the shower. Our solution was to get two folding chairs. We put one into the shower and one just out side. I sit on the outside one, transfer to the inside one, and while sitting on the inside one, lift my legs into the shower. Eva is spotting me the whole time. Then she leaves, I enjoy my shower (sorry earth, once I am in, I love it, so I use a bit more water than I should), and I yell when I am done. She helps as I reverse the entry process and we are done. It was a good thing we figured it out because I was getting a little musty. Those little clean wipes can keep you going for a few days, but there is nothing quite like a nice warm shower. Otherwise, work has been going pretty well. They are pretty awesome people and have been so kind and understanding. I hope I am contributing to the group. Eva is still studying hard. The folks are doing well. Last Sunday, we all went to a Breast Cancer 5K at Dodger Stadium. Eva and my dad ran and then helped my mom push me through the 5K walk in the wheelchair. I may not have been exerting myself, but I think my heart rate was elevated during most of the walk (lots of people, obstacles, and cracks). All in all, it was good to be out.

Take Care and Live Strong,
Tyler

March 7th, 2010 Work and Play

2010-03-07T18:00:00.001-08:00

Hi all. I guess it has been long enough since the last post. Someone mentioned that the “Happy New Year” sentiment is looking a little odd now that it is March. Mehh. Well, as usual, there have been a number of highs and lows over the last month or two. Generally, I have been doing very well, but as always, there have been some set backs, too. I have actually been off of chemo since late November and have been loving that. My PET scan looked pretty decent in November and my marker was down in December and I briefly thought that maybe this whole fiasco might be nearing its end. Unfortunately, in February, my marker was back up. It was not crazy, but it was elevated and I will probably go back on chemo in the near future. In January we figured out that I had a bit of hypothyroidism and my TSH was over 100 (normal is between 0.5-5, this hormone triggers the thyroid to do its thing. Basically it was working super hard to just get my thyroid to make a miniscule amount of thyroid hormone). It was odd that I was still just so lethargic after being off of chemo for a while and after a week or two of taking synthetic thyroid hormone, I really started to perk up. I would actually stay awake the entire day and be alert and aware, it was amazing. Another issue has been some neuropathy in my legs. In December it started getting pretty bad and lots of the feeling has been lost in my feet. Also, because the muscles were not getting stimulated, they weakened, especially my shin. This resulted in what they call foot drop. When I would take a step forward, I could not lift up my toe and it would tend to catch. Carpet was treacherous. I started physical therapy in December and the set me up with some AFOs (braces) to keep my toe up and it helped a lot. Immediately, I was able to walk like 3 or 4 times faster. Physical therapy continued and I was doing really well. I even joined the gym across the street. I was getting stronger, building endurance, and feeling really well. Then, about 2-3 weeks ago, something happened, and my muscles have been deteriorating ever since. Initially, we thought I overdid it at the gym one weekend but I never recovered, I just got weaker and weaker. The neurologist and nephrologist are puzzled. Almost all my labs are fine, I feel well, have good energy, I just cannot stand, walk, or get up out of low chairs. My calves feel like jello and are incredibly skinny. Not much more than skin and bone (and water at the end of the day). It has been pretty scary and I now use a walker just to get around the apartment. I realized the other day that I am basically like a toddler. To keep me in one place, all you need to do is surround me with a barier that is about 5 inches tall. That is all it would take. Eva mentioned I could get down and crawl over a 5 inch barrier, but I told what would I do then? Just crawl after that, I wouldn’t be able to get back on my feet. Now that I have revealed my kryptonite, please don’t use it against me. I guess I am getting some good experience of knowing what it is like to be truly mobility impaired. Poor Eva has to carry everything everywhere including supporting me with her shoulder as we go down the two stairs and the curb at the entrance to our building. She is a trooper. Hopefully we will figure out what is going on soon and then be able to address it. Well, enough blah blah about the aches and pains.

Eva and I have been keeping fairly busy. She is still going strong at Pepperdine and I actually started going back to work a couple weeks ago. I just go in one day a week for about 4 hours and do another 16 from home. The leg thing started right after I decided to go back and has been challenging, but again, Raytheon has been incredibly accommodating. They set me up with a little scooter that I use when i am at work and the lab has been incredibly welcoming and positive about my return. I think it has been good for me, too. Exercising my mind a bit. I have mostly just been writing reports which is pretty conducive to do from home. My primary reason for going back was to avoid COBRA and keep Eva and I on my work insurance but, aside from that, I am glad I am back working a bit. I like the work I do and it feels good to be a semi-productive member of society again. I just hope we can get this leg thing figured out and I can keep putting in my 20 hours.

Otherwise, Eva and I got out of town for a couple days and went down to Temecula. We really enjoy it down there and find it a great place to just hang out and relax. The notable occurrence this trip happened pool side. I was enjoying the jacuzzi as Eva finished up her work out and had the whole pool area to myself. A couple people joined me as she got changed and then, before she got back about a half dozen had come by. They seemed nice enough and mentioned that they were part of a healing group. Hmm. I asked where they were from, and most were from southern California, but a few had come from elsewhere including all the way from Germany. Eva joined me in the jacuzzi and then after her another 5 or six got in, too. Now, there is a guy with a microphone sort of organizing the crowd that is gathering in the pool. It was only about 10 minutes from when I was alone to when there were 70+ people in the pool area. Then, once everyone got a spot, the guy started playing a tape of himself going through a little chant with responses from the crowd.
“Everyone feeling good today?”
“We are feeling good”
“Everyone feeling fantastic?”
“We are feeling fantastic.”
“Super fantastic?”
“Super fantastic.”
“We are grateful for this great day?”
“We are grateful.”
“How grateful?”
“Super grateful.”
And on and on. Eva and I just looked at each other puzzled. We had both heard of groups like this, but never witnessed it fist hand. It was also a little unnerving because the 12 people in the jacuzzi were all facing us (we were between them and the pool and the leader guy) with their hands over their heads and would occasionally dip beneath the water (at which point the jacuzzi would overflow). Eva and I got out, saved our stuff from the water and decided it was probably time to go. But not before Eva “checked her emails” and took a little movie with her iphone. I love my wife, she’s awesome. From that point on, every little thing that weekend was super.

Eva and I have been trying to be a little more social, so if you have not heard from us in a while, give us a call or a txt. It has been working out really well to hang out with people in San Pedro while I dialyze. Nate and Becky have been wonderful company a number of times. I am sorry for my “hermitness” over the last few years. The first step is admitting you have a problem. We actually had a little dinner party at our place a couple weeks ago with some of Eva’s friends from Pepperdine and a few of my friends, too. It was a lot of fun and Eva set up a Hell’s Kitchen style, guess what food you are eating game. Boiled carrots and bell pepper stumped me but luckily my other two team members carried us to victory. I was surprised at how well everyone did. It was a little hectic to prepare as we did not get back from Temecula until after 3, but she still managed to pull off dinner for ten. Go Eva! I helped a little. I made the guacamole.

Last night, Eva and I went to the little thing put on by the PANCAN club at LB Poly HS. We did not really know what to expect but it turned out to be a great little event. It was a little variety show with different students singing and dancing and raising awareness. I was amazed at how well done the whole affair was. The had info packets from PANCAN, friendship bracelets, food, and purple everything. Someone mentioned that they raised over a thousand dollars. Pretty incredible considering muffins were only a buck. A number of the students introduced themselves to me and were very kind and seemed like really good kids. There is hope for the youth. This is a little hard to wrap my head around as I have grown pretty curmudgeonly these days. The president of the club’s best friends father was diagnosed last December and was sort of the catalyst and it was just really impressive what these young adults put together in a pretty short amount of time. Pretty touching, too. If the rest of us had the energy and enthusiasm of those youngsters, we would be a lot farther down the road to a cure, that is for sure.

Thats about it for now. I hope all are well and the new year has started off on a good note for everyone. As my Grandma used to say, “You have only got one body, so take care of it.” I’m trying Grandma, I’m trying.

Take Care and Live Strong,
Tyler

Happy New Year!

2010-01-11T17:51:00.000-08:00

Happy New Year everyone! Wow, 2010, pretty amazing. There were times when I was not so sure I would see 2010, but here I am. I hope everyone had a wonderful holiday season. Were people good boys and girls and got what they wanted for Christmas, Hanukah, Kwanzaa, Ramadan, or any other holiday I may not be thinking of? Did everyone do their part to try to get this economy rolling again? I tried to be a good consuming American, but you know I am on a pretty fixed income. You do what you can.
As usual, there have been some ups and downs, though things seem to be going pretty well, health-wise, these days (knock on wood). I had a pretty decent scan in November and my marker has been fairly low recently, so we are holding off on chemo for the time being. I have actually been off for a good 8 weeks or so. I am actually feeling pretty well right now. The flip side is that my body, at this point, has pretty much been beat to crap and I am not really sure how much more chemo I can handle. The few months before we stopped, I got a lot of drugs without many breaks. Pretty much every week since the end of summer and I think we may have hit a bit of a tipping point here and there in my body. The peripheral neropathy is pretty bad as I really cannot feel my feet nor much on the very surface of my skin up my legs to around my calves. Without the sensory nerves in my feet and toes, standing becomes a little tricky sometimes.The motor nerves have also been damaged and the associated muscles have wasted away, especially my shins. It is basically impossible for me to raise my right foot or point my toe up. My left foot is affected, too, but there is still a bit of movement there. This all results in me walking very slowly and very hilariously. I tend to march, so as to bring my foot up high enough for my toe to clear the floor and then slap, because I don’t set my foot down heel, toe, more like all at once. I think it sort of looks like a high stepping duck. I am also painfully slow. It is often a race against the clock when I cross larger streets. I barely made it across Sunset the other day, whew, pretty stressful, too. Luckily, I have started physical therapy and, though progress is slow, I have noticed a difference after the first 3 weeks. My therapist gives me a really good workout every session which greatly pleases Eva. Somehow, I still have trouble with food. I have a hard time finding food I like and then often have a bit of pain and discomfort digesting and expelling it. I have managed to put on about 10 pounds, but it is hard keeping it on. One exciting moment was when, about two weeks ago, hair started coming in. It was awesome, little sprouts on my head, my mustache (well my pathetic teenage dirt-on-lip mustache), my legs, my arms (barely), and a few on my chin. My chest and armpits remain hairless about which I have mixed feelings. Right now it looks like I have a buzz cut. The really great part is that I now have eyebrows and eyelashes. What a difference that makes. Before, I looked like a super aerodynamic alien egg. Now, fairly human, though, I will admit, markedly less aerodynamic.
Otherwise, dialysis continues, and continues to be taxing physically and emotionally. It has been more tolerable recently as friends have joined me and hung out for a number of sessions. It is a really good way to catch up with people and pass the time. Again, I am very thankful that dialysis exists and that I have such a comfortable set-up, but it wears on you over time. It is just always there. There is no vacation from dialysis. My parents have been doing an amazing job of helping out with all the set-up, putting me on, feeding and keeping me warm during the sessions, taking me off, and cleaning up, but it is still just emotionally wearing. It is hard for me to need to be helped so often. I liked my old self image of being very independent and self-reliant. I tend to resent the situation and then you get grumpy Tyler. Not very pleasant. Sometimes the biting remarks just come out without me even thinking to close my mouth in time. I apologize if you are ever on the receiving end of one. Usually, though, they are reserved for family. Eva does a good job of balancing me out and often stops me in my tracks with remarks of her own. Like a good punch to the nose, I usually stop, shake my head a bit, and then smile as I find myself in a new, sunnier mood.
I have not been too active, but I did manage to get out of town for a few days before Christmas. While Eva was visiting her folks in Switzerland, my folks and I went up to Orcas Island to visit my Uncle Jerry and Aunt Mary. Orcas is up in the San Juans, right on the border with Canada, near Victoria. They have a beautiful house though it is a little out of the way but well worth the trip as it was really great spending some time with my aunt and uncle. It was a little chilly, so we spent most of our time indoors catching up or eating and catching up. My kind of trip these days. One evening, we drove up to the top of Mt. Constitution and enjoyed a pretty fabulous view though it did take quite a while for me to drag my sorry ass up all the stairs in the tower at the top. Throughout the few days, there were some pretty good stories about small town island life. I maybe romanticizing it a bit, but I really like the idea of small town living. I loved the summer I spent in Petersburg, Alaska. They often have such character. Eva’s little town in Switzerland is pretty cool, too. Don’t get me wrong, I really enjoy city life, but I could see myself living in some po-dunk little town somewhere (well, I guess not now, as I do require quite extensive medical facilities, oh-well).
Eva as been doing well and has really been enjoying her MBA program at Pepperdine. She had a great first semester and is just starting the second. It can be very stressful at times, but she handles it very well (with a little encouragement sometimes). The folks are doing well, too. Both are pretty active and get out and about quite often (much more than me but that is not really saying all that much). Sadly, my Uncle Tim, Aunt Robbie’s husband, recently passed. I did not really know him very well but the loss will certainly be felt by the entire family and my heartfelt condolences go out to my aunt. I attended his memorial service yesterday and, though it is always sad when someone passes, the service was a very nice celebration of his life and it was really good to see so much family.

Again, I wish everyone happiness and success in this coming year.

Carpe Vitam and Live Strong,
Tyler

5K Champs again! Great People, Great Day!

2009-10-29T15:38:00.000-07:00

Whew. What a day! The LA Cancer Challenge was last Sunday and it was a great day. In fact, I was thinking about it, and Sunday was probably one of my favorite days in a long, long time.

Thank you all so much!
 Thank you to all of the wonderful people who came out and ran and donated so much time, energy, and money to a very worthy cause (ok, I may be a little biased). Thank you to those of you who showed their support from afar (You rock Aunt Zel, Breakfast buddies Ray and Bob, Uncle Bob, and Aunt Gloria, and the many others who gave but could not join us for the race).

All of your generosity was truly touching, especially with everything that has been going on financially over the last year. If you ever need any rationalizations, I have plenty so try this one on for size...with stocks being incredibly volatile, bonds likely to lose value if interest rates ever go up, housing being, well, housing, and T-bills yielding close to 0%, cancer research may be the best investment you could ever make. Think about it, regardless of how much or little you give today, there is a one in three chance you will get some form of cancer during your lifetime. I know that I would pay pretty much any amount for a cure for my cancer. Hopefully you never have to face a cancer diagnosis, but if you do, hope that it happens later rather than sooner. By that time, your dollars donated today may have contributed to a cure, which you will probably be able to afford (Go public option!). So your donation today would have matured into a treatment that could have infinite value to you. Hmmm, infinite, now that is a good return.

Threepeat!! We continued our streak and won our third 5K team title in a row. Props go out to Ross C.(for finally figuring out how to get onto team Tyler and taking 2nd place overall), to Daniel D. (always a powerful presence on the course), to Shannon R. (for being the first woman and 5th overall, getting Nike to provide some awesome jerseys, and letting all of us couch potatoes bringing up the rear say that we were on the same team as a World’s medalist and Olympian), Nate B. (for taking 9th and bringing out a great group of young runners from the Home of Scholars and Champions), and Andrew G. (for showing us that you can bounce back from something as severe as a collapsed lung in college and still take 10th in what is becoming a fairly competitive 5K, Maybe there is a chance that my body will eventually recover). Honorable mentions go out to Dan S., Mike F., Greg J., Alex G., and Mark C. for all going under 20 minutes and Effort awards go to John C. and Chris C. for representing the OG Choad and just completing the race. I did manage to drag my sorry butt around the course in 1 hour 26 minutes and 1 second (yes, that was for the 5K) and was emotionally broken as the kids fun run started right as I was finishing and a herd of children dominated me in the final 100m. By the time I crossed the finish line, I think they had stopped handing out medals (I forgot to pick up my number anyways) and was a little bummed. Luckily, my wonderful wife saw my disappointed look, gave me her medal, and saved us all from a big kid tantrum amidst the young well-behaved finishers.

The 10K team did great as well. Props to Dad, Becky S., Karen B., Marty L., Eva and Mom, though I think we may need to make some adjustments to be a little more competitive next year. It is really pretty straight forward. I am just going to need each of you to train a bit over the next year, and, if everyone can take, say 11 minutes, off their time, we should be in contention to win the 10K team title as well. You might want to start training now.

All in all, the race was a great opportunity to catch up with a lot of different people and I really enjoyed the time I got to spend with so many of you. I am trying to de-hermitize myself a bit and hope to see as many of you as I can before next year. Txts are probably the best way to reach me and please, be persistent. I often go days without checking my email or voicemail. Sometimes just getting to the couch is all I can manage. Other days I am pretty much unstoppable (or at least I think I am).

After the race, the contingent of x-Cal runners and associates went over to Ross’ parent’s house for lunch. They have a wonderfully pleasant backyard where we continued to tell old stories and new ones over crepes. Thank you for hosting a great little get together.

As if all that activity was not enough, Eva and I had tickets to a live taping of one of my favorite radio shows that evening- NPR’s Left, Right, and Center. There was a cocktail hour and then Robert Sheer, Matt Miller, Ariana Huffington, and Tony Blankley took the stage and did a special 45 minute show in front of a live audience. The “stars” mingled during the cocktail hour and a bit after the show where Eva and I actually got to meet Matt Miller. I usually do not go ga-ga over famous people but, as a testament to my nerdiness, I was a bit start-struck by Mr. Miller. He has laid out a very logical progressive agenda on which I agree with many of his ideas. I managed to utter that I had read his two books and he replied that I was amongst a select few. Then Eva mentioned that the Swiss model (which he often touts as a possible model for American health care reform) is still very expensive and might not be the answer we are looking for and he thought about it a minute and mentioned that he liked Tony’s comment during the show that the Swiss model works in Switzerland because its run and used by the Swiss. We got a quick picture and then left and I was just on cloud nine. What a day. So many wonderful people and moments that I will treasure for a very long time.

Exhausted, we made our way home, got a bit of food, and I slept for the next 17 hours, woke up, dialyzed, then went to bed again. On Wednesday, I started to feel sort of ok. Sunday certainly took a toll but was totally worth it.

Take Care and Carpe Vitam,
Tyler

Here is Team Tyler at the start. Or rather, the walking contingent of Team Tyler. Full of energy and ready to go.

Here we are a little later in the race. A bit less energy but we are still going. I kept telling myself, "Right foot, left foot, Repeat"

The Poly boys and girls that came out to the race. You know, next to the petite Shannon, my arms don't look quite so thin. Too bad she could probably dominate me in an arm wrestling competition.

Nate and Becky and me. Nate and I ran together during my glory days and Becky is his lovely wife. He now coaches the Poly girls XC team (he is the new Joe Carlson).

Eva and I with Matt Miller. If you are looking for a couple good reads, check out The 2% Solution or The Tyranny of Dead Ideas. Progressive ideas laid out in ways that both liberals and conservatives should love.

LA Cancer Challenge Oct. 25th!

2009-10-05T10:47:00.000-07:00

Wow, well, what can I say? All of the amazing people who left comments and wrote such wonderful words truly touched me. Thank you, from the bottom of my heart, for each and every one of you. I really felt cared for, and those feelings are good medicine. Good for the soul, good for the fight. Again, I am sorry that I go a bit of time before updates. Tiana mentioned that people on facebook ask her about me, but I just figured that she was just trying to make me feel good. I know I should be better about updating, and the response after the last blog was immensely motivating. I think my aunt Betty took the prize for the fastest posting of a comment, a mere 30 minutes or so after I posted (on a Saturday night, no less. Betty, you and I have got to get out more). Again, thank you so much for your kind words. I am still doing very well and I think that every one of you have played a part in that. I may not see many of you very much, if at all these days, but there has got to be some sort of mental/spiritual thing going on (which is a pretty hard thing for an engineer to say).

Anyways, a quick health update. As I said before, I am still doing very well. I am a little light and my legs barely have the strength to get me around, but I still manage to get around, sort of. Dialysis still sucks but is tolerable and if you really press me I will admit that I am really thankful for it (though there are days when I don’t really think I need it but I suspect that I am being kept on because that is how the system works (this is on my more paranoid days and in actuality, I probably would not last long off the machine)). Wow, I was sort of all over the place there. My appetite is doing well (when it gets helped) though I could certainly be eating more. And of course there are a few other little issues, aches, and pains.

Now, onto the more important stuff. First of all, the LA Cancer Challenge 5K/10K is coming up in just a few weeks, Sunday morning, October 25th. The 10K starts at 7:30am (yikes!) and the 5K starts at 9am (a bit more reasonable). I will probably be there to cheer on the 10K runners and walkers, but I will be attempting the 5K myself. Lets see, if the race starts at 9am, I will probably be finishing around, hmmm, 10:30, 11, hopefully before noon. Last year, it took me 1 hour and 14 minutes. If I am still out on the course, someone save me some pancakes. Please go to my team page to join our team.

Link to the Team page. Please scroll down and click on "Team Tyler".

We have had the best overall 5K team time two years running, and it would mean a lot to me if me kept that streak going. Who knows what will happen this year, but it is looking like Shannon Rowbury (who ran the 1500m for the US at the 2008 Beijing Olympics) will again be leading our team. Just think, you can tell your neighbors, friends, and grandchildren that you ran alongside an olympian. She is really pleasant, too. She may even talk to you (that, by the way, is the only requirement for my father to like you). We all had a lot of fun last year and it is a really good opportunity to catch up with people I do not see all that often. So I hope to see you there. I apologize for the race’s website. If you can successfully navigate through it, I applaud you. Don’t worry about setting up your own website and doing you own fundraising. Just go through the motions, it has been a rough year, financially, for all of us.

As far as keeping busy, most of my time is spent dialyzing, getting chemo, or recovering from chemo, but I have managed to get out of town a few times over the last few weeks. I just got back from a trip to Portland to visit some family and see my great aunt on her 95th birthday. She looks great and is just as feisty as I remember her. I think I may have more in common with her, these days, than anyone else in the family. We walk at about the same speed, don’t really handle stairs all that well, take a while to get up out of chairs, are fairly particular about our foods, and occasionally speak our minds a bit more than maybe we should. Well, I guess Zel can say whatever she wants, whenever she wants, but I suppose I should maybe hold my tongue from time to time. I spent the majority of my time with Zel, but was also really happy to see my other family members in the area like Tom and Birken, Betty and David, and Jerry, who drove down from Washington. Everyone looked to be doing very well and I was really pleased having that much family together. I know that Grandma would be happy that her boys saw each other and that just put a smile on my face. Zel had quite a birthday filled with eating, eating. and more, you guessed it, eating. There was a bit of visiting during and between meals, but the main focus of the day was food. This was turning out to be a pretty good trip for me, once I medicated. Special props go to Birken and Jerry who came from pretty good distances by different combinations of boat, bus, or truck. Birken is just starting his sophomore year at Evergreen and is looking like quite the professional college student. This suits you much better than disheveled high school student. Well done, sir. Another highlight of the trip was Zel’s friends. They are hilarious and we really enjoyed our breakfasts with them. Can you believe that one of her friends lived in a house near Santa Fe, New Mexico, built in 1980, that was entirely climate controlled using passive solar energy. It was built into a hillside so that three walls were insulated by earth and then the south wall was all windows. On summer days, they would close the blinds. The rest of the year, the sun warmed the house nicely. I asked if she was comfortable, and she said she wore shorts and sandals every day of the year. It can be done people. It is about time we start implementing these considerations a bit more often when building. The flights went smoothly, the old folks home was very hospitable, the family and friends were warm and welcoming, all in all, it was a great few days. Even the weather was pretty nice, though I heard it was gorgeous the week before we got there (I think we heard that the last time we were in Portland, too).

The other two trips were a weekend in the bay area and a weekend in Tahoe. The first was mainly to see Tom as he has now moved to England and it was good catching up with him, his brother, father, and friends and also to see Chris and Katie and Vincinzo (their 2 month old). I got to spend even more time with the Coffees the next weekend which I spent with them in their family’s cabin in Tahoe. Both weekends were amazing and it was really good for me to spend some quality time with good friends. Hanging out with the Coffees was pretty amazing. In about 15 months, Chris went from being single (not really) with no attachments to him and Katie owning a house, getting married, having an adorable baby boy, and getting a dog. Wow, that is some fast domestication. Impressive. I have never spent that much time with a child that young though I think I made progress over the weekend. At first, I was pretty nervous even just holding Cinzo, but by day 3, I had held confidently, fed, burped, and changed him(with a tiny bit of poop) and even had gotten him to smile (no small feat for this kid). It felt pretty good and I was so thankful for Chris and Katie to be so comfortable with their child and me. Maybe I am some relation to my grandmother.

Anyways, the rest of the family is doing well. Eva is diving into her MBA, meeting great people and learning fascinating things. My parents are doing well. Dad is still playing soccer. Mom is running a bit more. Both are doing a great job at taking care of me. Eva’s parents just got back from a cruise through Scotland that sounded amazing. I love castles, and abbeys, and Scots. Well, I hope to write before then but if I don’t, I hope to see you at the LA Cancer Challenge. Remember to bring your “A” game.

Take Care and Live Strong,
Tyler

Still ok. Aug 2009

2009-08-15T21:53:00.000-07:00

Well, once again, it has been a long time since I updated the blog. As usual, I am sorry for the absence and I appreciate those of you who remain persistent in checking it. Maybe an RSS feed would be a good idea. I am still doing well considering everything that has gone on. It has been a hard road since my kidneys went on the fritz, but I am still fairly normal. I guess a run down of the cans and cannots might be good. I can walk, I cannot run. I can go up stairs, I cannot go up two stairs at a time. I can lift small objects, even a few grocery bags, I cannot do pull-ups (funny story). I can pee, I cannot pee enough to prevent my body from filling up with water without dialysis. Most days, I can drive, some days I cannot drive, or maybe rather, should not drive (on a closed course I’d be up for trying anything). I can eat with a little help, I cannot really seem to eat enough to gain back any of the weight I have lost. Luckily, I am remaining pretty stable in the low 140s (my pre-diagnosis weight was 175). I can shower, I cannot comb my hair because I have none (and I mean none, I feel like Mr. Bigglesworth, Dr. Evil’s cat). I can be alert and appear to be pretty normal and functional, I cannot keep that up for an entire day (some days for more than an hour or so). That said, I still feel really lucky for still doing so well. In July, we passed the three year mark since diagnosis. Quite a milestone. In the beginning, we were celebrating the weeks, then the months, and now three years, and I still have my mind in the game (or at least I think I do, which I guess is all that matters). It has been a grueling three years and very tough on Eva, my friends and family, and me, but we knew from the beginning, this was going to be a marathon, not a sprint. I really have no idea where we are in the race at this point. Neither the start line nor the finish line are in view.

I have not really been doing all that much and I apologize in advance, if I resume updating the blog, it may be pretty dull. We’ll see, if it gets really bad, I will just start making up stuff. I guess the big news is that Eva will be starting her MBA program at Pepperdine at the end of the month. I am really excited for her and also looking forward to learning a bit myself as I look over her shoulder from time to time. To reduce the commute for her, we moved earlier this summer and are just about settled in. I have to say, I love the location and the apartment though there are a few minor drawbacks. We moved to a small one bedroom in Pacific Palisades and are only a couple hundred meters from the water. Being close to the water and also the trails in the Santa Monica Mountains is wonderful. Plus, now we actually have a wall that separates the bedroom (before, we just had some vertical blinds as the divider and Eva is sort of sensitive to light when she sleeps - not ideal). The apartment was redone right before we moved in and I really love it, but we are right next to Sunset blvd. and it can be a little loud. Eva and I have entered what I call our curmudgeony phase and sort of rail against the various sources of noise. We shake our fists at the motorcycles, curse at the loud cars, and are currently working with the MTA to try to get the bus drivers to turn off their buses while they wait to begin their routes. I could not believe it, the other night, a bus was on and sitting there for 32 minutes before leaving. Typically, they will leave the bus on and then actually go to the Vons or talk on a cell phone outside of the bus. I have confronted a bus driver and she said that she leaves it on because occasionally, it won’t start again. Hmm, seems like we got some pretty sweet buses here in LA. I wonder why more people don’t ride them. The noise is what really bothers Eva and I, but every minute that they are sitting there with there engine on, they are getting 0 miles to the gallon and wasting gas that you and I pay for. Whew, thanks for letting me rant a bit.

Anyways, it has been pretty hard to travel with dialysis and the logistical issues that entails but Eva and I actually got out of town for the first time in a long time in late July. We did a road trip to Bryce and Zion Canyons and it was awesome. We spent one night in Vegas, then two in Bryce, two in Zion, and another night in Vegas on the way back. These canyons are pretty amazing. If you have never been, I highly recommend it (especially if you like rocks). Bryce has some really unique rock formations, really unlike anything anywhere else in the world. A lot of pinnacles, all grouped together starting at the rim of the canyon and going down into the canyon and also a few incredible natural arches. There were thunderstorms in the afternoons, and even some hail but otherwise the canyon was pretty warm. We attempted a short hike down into the canyon that did not work out all that well. I was having trouble going down (bad sign) and between the hot sun, the steep trail, my lack of fitness, and the looming thunderclouds coming over the ridge, we decided to turn back early. Good thing too, because I barely made it back up to the rim. Those reverse climbs can be pretty deceiving. People would stop and ask if I was OK. I guess my expression was a little worrisome. Eva was a little taken aback, she was taking care of me. I am so thankful for her, I might still be down there without her help. We decided to just drive to some overlooks for the remainder of that day (good idea). Zion was also spectacular and very different. On Bryce, you are on the rim, looking down into the canyon. At Zion, you are at the bottom of the canyon with the huge cliffs all around you. Totally different feel. Plus Zion has a small river running down it which always adds to the appeal. Just to give you an idea of the depth of the canyon, the floor is around 4000 ft. and the tops of some of the canyon walls are over 8000 ft. Really cool. At both parks, we were fortunate enough to stay at lodges inside the parks. You just could not beat the locations (unless you were backpacking). We brought the cycler and I dialyzed once at Bryce and once at Zion. What really helped was that both lodges had porters who would help you with all your stuff if you needed it. Eva and I can do it, but it really just makes life a whole lot easier. What is a large burden for Eva and I, really is not that big a deal for a big guy. If we manage any trips in the future, I am sure we will be staying at places with porters, they are key. We did a couple hikes in Zion which went really well (I survived). It is still hard to think that four years ago, basically any hike that existed was doable for me and now I really can only complete the most basic hikes. I am saddened that Eva and I can no longer just march out into the wilderness and know we will be ok, and that even the easy hikes need a good looking over to insure I will make it. I wonder what I am missing. The curiosity that took me around the next bend or over the next little hill when I was young, is still alive in me, and eats at me, but then I try to remind myself that I am lucky for what I can do. I am lucky for what I can see. Vegas was pretty fun as sort of bookends to the trip. Eva and I are not millionaires nor are we in the poor house. In fact, we did not gamble at all. I do not know what it was, it just did not appeal to me or her this time. On the way to Vegas, I think I was in the hottest weather I have ever been. The outside temperature was 117 degrees F. I cannot imagine living in that kind of heat. Luckily the Prius performed beautifully (thanks dad and John B.) and we just marveled at the desert from our little comfort pod. It had been a long time since I had spent the night anywhere besides my apartment or my parents house, and it turned out really well. It sort of felt like old times (except when I was attempting to hike) and I felt so fortunate to share the experience with my wonderful wife. She is awesome.

Otherwise Eva and I have just been settling into the chemo patient routine. Get chemo, feel crappy for a few days, slowly start to feel normal, maybe get one or two good days, and then go back for more chemo. We have really gotten into gardening and are really getting a lot out of our tiny 2m by 2m balcony. We put up planter boxes and have a little herb garden with cilantro, oregano, thyme, sage, chives, margarine, and parsley. We got some other plants and then as we were running out of space, we got a rack to really maximize our gardening area. Sometimes we look over our miniscule little green space and I think we probably have the same expressions as if we were looking out over acres of cultivated land. Personally, I am just amazed that seeds actually do turn into plants. Another victory was getting an orchid to reshoot and rebloom. That orchid is basically like a child to us. Disturb it and beware our wrath.

Well, I think that is about enough for now. I hope each and every one of you are doing well. Remember, if there are things you really want to do, get out there and do them. You never know what may happen and someday you may not be able to accomplish them. Now is the time. If another blog absence occurs, just remember what I would always tell my mother, “If you hear nothing, everything is probably ok.”

Live Strong and Carpe Vitam,
Tyler

Here are Eva and I at Bryce Canyon. Now there is a happy guy.

Natural arch. Just stunning. Yikes, I am still getting used to seeing my bald head in pictures.

As we were driving, we came across a tree that was still smoldering from a lightning strike. It looked like the base of the tree had exploded. Pretty gnarly.

Do you want to know why I listen to my wife? Because she is really strong and I do not want to know the consequences of not doing what she tells me to do.

Me in the narrows at Zion. The walls on both sides of the canyon basically go straight up for hundreds of feet.

Eva on the top of Angel’s landing. I did not go on this hike with her. There was a lot of elevation gain but, obviously, the view was pretty nice. Two weeks after Eva did this hike, a woman fell to her death at the top while hiking with her husband and two young children. Quite a tragedy, but, needless to say, this hike is not for everyone. I am glad Eva is smart, cautious, sure-footed, and not scared of heights and am so thankful nothing happened to her.

A silhouette of our orchid just as it was beginning to bloom. Our pride and joy.

LA Cancer Challenge 2008 Photo Highlights

2008-11-01T02:57:00.001-07:00

So there are a lots of shots of me, I guess they will continue the self centered nature of this blog. Sorry about that. If you have any good shots, especially of the entire group, please email them to tnoesen@gmail.com .

Just a reminder, whichever way you feel, please get out and make your voice heard on Tuesday, November 4th. It is just three days away. Personally, Obama’s plans for healthcare would help me in very real ways (and probably you, too, by increasing the pool, the outlyers like me more readily get absorbed and I can get the care I need to stay out of the ER. Alternatively, if I get dropped or denied, I might end up at County more often, in which case everyone would probably pay more as I would probably not get the care I needed until I ended up in the ER.). Also, I will be voting for Debbie Cook for the 46th district congressperson. Time to vote the bums out.

Again, thank you all for making the LA Cancer Challenge such an amazing event. These shows of support really invigorate me in my fight against pancreatic cancer. Just remember how important it is to cherish those close to you, see the inexhaustible supply of beauty in the world, and truly live life.

“Live as if you will die tomorrow. Dream as if you will live forever.” –James Dean

Here is a shot of the group. What an amazing turnout. Thank you all so much for getting up early on a Sunday and coming out for a good cause. Your support means more than you know.

A little pre-race pep talk for the LB Poly XC girls from Shannon Rowbury (US Olympian for 1500m). Nate and I should probably be taking notes, too. I did not get up the courage to ask, “Do you have any tips for me to shave some seconds off of my 1 hour 15 minute and 21 second 5K time?” There is something to shake your head at. In my prime I could and did finish a 5K more than 1 hour faster. Yikes. I have a long way to go. Even without cancer, I doubt I could get back there.

Dialysis has become a big part of my life these days and these are the people who make it livable. Vicky runs the Da Vita unit at UCLA and Michelle is the Home Hemodialysis coordinator. Lets face it, dialysis sucks, but both are amazing women and really do make the treatment tolerable.

This is other wonderful person in my dialysis life, Richard. He is the Home Hemo nurse. See that smile on his face? How could you not enjoy spending a few hours a week with that guy? Though we joke a bit and each tell stories, at the critical times he is on it and his calmness and skill put me at ease and actually help me do my part better. Thanks for bringing the family out Rich. It was great to finally meet Ines and your boys (3/4 at least).

Like every little rink-a-dink 5K/10K, there is a race to win and then there are innumerable little races throughout the field, even way in the back. Here is a moment of frustration, as I got passed by a kid being pushed in a wheelchair. Luckily I did not see any little old ladies in walkers. I don’t think I could have borne that embarrassment.

Later, I had a smile on my face when the finish line was in sight. I completed the race without stopping, though I was going pretty slow on the slight uphills, and the flats, and, well, I would not exactly say that I was blazing down the downhills.

I think I was able to complete the race because of this inspirational angel. Can you believe it? Somebody I know thought she looked like a toilet brush.

Who wouldn’t want a picture with 6 high school girls and Nate’s wife, Becky. As far as a picture with Nate, I have mixed sentiments. Well, after further review, I guess he is pretty good-looking, too.

Well, it ends with two of the three people who bear the most burden (my tirades and such) and keep coming back for more. Now that is love. And Mark Carpenter, he’s a pretty nice guy, too.

And my lovely wife, Eva. Wow, am I lucky. And look! She is blowing me a kiss. What more could I ask for? Here she is cruising through the 10K. Right after, she walked the 5K with a couple friends. What a champ. Go Cutie!

Carpe Vitam and Live Strong,
Tyler

LA Cancer Challenge 2008

2008-10-27T16:08:00.000-07:00

Wow. What a day. Thank you so much to everyone who came out and walked or ran and also to those who gave so generously. It was a really fun day. I am really sorry for those of you who did not get a goodie bag. There were a couple instances where the race could have prepared much better. I am not sure if they were expecting the economic downturn to effect turnout or what, but the community came out in force for Pancreatic Cancer Research. There were over 3000 runners this year. Now it is not quite the 60,000 runners that the Revlon Breast Cancer run gets, but it is a really good turn out for a pancreatic cancer run. Thank you all so much for also surviving their convoluted web donation system. Honestly, I see a lot of room for improvement. I understand that they want to make everyone a fundraiser and give everyone their own fundraising page, but really, some people just want to give and be done with it and that is perfectly all right. We did so well as a team. I am so proud of everyone’s performance. On the fundraising side, we raised an amazing $4,040.00! That was 300% over our goal. Again, incredible generosity. We had 46 people join Team Tyler. I will never be able to communicate how much your support means to me and how much it has helped me fight this disease. Now, I have no idea how they figure out the team standings, but it looks like they took into account both races, and even though we were heavily stacked in the 5K and were overly relying on my father in the 10K, we managed to win the team title by over 3 minutes. It looks like we did this for the second year without Ross’ (the second place finisher) help as some how he just can not get it together to actually join team Tyler. Next year I may have to sign him up myself. Our team did benefit incredibly from Shannon Rowbury and her friend Dan demartini (cool last name). He won the race and she was 4th place overall and the first woman and totally whooped John Burke. I guess those Olympic athletes are legit. Also, another great perk was that, even if you walked the 5K in an abysmal 1:14:20 (yes 1 hour, 14 minutes, and 20 seconds), you can say that on October 26th, I was on a team with an Olympic athlete. We may not all get to the Olympics (except maybe to watch), but at least we will have that.

I really enjoyed the walk this year as a number of people on the team all walked together and chit chatted during the race. It was really great to catch up with so many of you and it sounds like everyone is doing really well. Nate Bershtel, a former teammate from my LB Poly XC days and the current girls XC coach at LB Poly, brought out a number of runners who all walked with me. I don’t want to be a dirty old man or anything, but it is pretty nice to have a dozen or so high school girls around.

One exciting moment during the morning came when my father spotted Harrison Ford. He of course could not just leave him be, so he ran and grabbed a Team Tyler t-shirt and ran over to Harrison and gave it to him. He did not put it on but we did see it hanging out from his belt a little later that morning. About a half hour later we saw him going into a porto-potty (I know, he wipes his own a**!) and we were going to confront him after he finished and walked out to insure that the t-shirt was not soiled. Unfortunately, we got distracted and never saw him leave the porto-potty. You may have escaped this time Han Solo, but I will watch you next time. In case you were wondering, his kid did the little kid’s run. I was thinking about hopping in, but I don’t think I could handle the emotional devastation of being beaten by 100 seven-year-olds (their quick little guys and girls).

Once again, thank you all so much for your support.

Take Care and Live Strong,
Tyler

Race Tomorrow

2008-10-25T18:26:00.000-07:00

Sorry that this is a little late, but oh-well. The LA Cancer Challenge is coming up this Sunday. I am really looking forward to seeing so many of you there. I hope everyone is in shape and we can make a good showing. It is looking like we may be rounding out our team with an Olympian, so hopefully that will give us an edge. The race details are at www.lacancerchallenge.com. The 10K starts at 7:30am, the 5K starts at 9am, and both races are on the Veteran’s grounds next to UCLA. Parking should be available but may be a little ways away from the starting line, so give yourself plenty of time. We will meet and distribute t-shirts somewhere near the team canopies/tents. Just look for a lot of people with Team Tyler t-shirts. Thank you all so much for your incredible generosity and support. You all do more for my disposition and motivation to fight than you will ever know.

Thank you so much to Debbie Cook and Dr. Geisse for your very kind comments. Both of you are very special people and I feel so fortunate to have met and known both of you. Again, if you live in the 46th district, I am sure Debbie Cook would make a great congresswoman and she certainly gets my wholehearted endorsement (not that it is worth much, but she still gets it).

As far as my health for the week, it has been up and down a bit but generally ok. I was scheduled for chemo on Friday morning, but I woke up with a fair amount of back pain and we decided to hold off for a week. Over the last six weeks, I usually feel crappy on the day of an infusion, then really crappy for the 3-5 days after an infusion, then it slowly gets better and for maybe the 3 days before my next infusion, I feel fairly normal. That has been the “regular” 2-week cycle for the last few sessions. This last cycle, though, I just never really got to that semi-normal feeling. I was still feeling fairly crappy the day before the infusion. Add that to some back pain, and you have got a day where adding chemo probably is not going to do a whole lot of good. I always hate to miss a session, for fear that the cancer might gather a bit of strength, but I think that my body needed a bit of a break. Like Eva says, it is no good if you beat the cancer but the treatment has taken out all of your other systems, too. Another perk, is that I will have no pump for the cancer challenge. It would have been very dramatic, but I think I have a better chance of completing the 5k without it. Just to let people know, we may have to take breaks. Plan on chitchatting a bit with the water station volunteers. Maybe try to come up with a few good jokes to brighten their days.

So I have had to take some painkillers just to feel fairly normal over the last couple weeks. Eva was initially a bit worried as se is a caring wife, but after seeing me in pain for a few hours, she understood how important they are. In fact, a few hours after “perking up” a bit post popping a couple pills, she actually said I seem even more like my old self than when I am not taking anything. I would like to not have to take anything, but I am intimately familiar with how pain can take away your will to fight and destroy your resolve. I consider myself pretty tough, but when I am in significant pain, it is just so hard to stay motivated.

Anyways, I am really looking forward to seeing all of you tomorrow. Get a good night’s sleep and get psyched up for the run.

Take Care and Live Strong,
Tyler

Political Rant

2008-10-19T16:10:00.000-07:00

Well it seems like everyone has a political opinion to share these days and Eva and I certainly have ours. Now this may come off as a little self-centered, but I figure that is one of the privileges of having a blog- sort of what it is all about. Blogs are not exactly beacons of humility. Anyways, I apologize if it comes off as fairly self-serving. I am also sorry for the lack of photos and the length. There is a local endorsement towards the end. Is that enticing? Hopefully.

What an amazing time that we are living through. Of my few years, this just feels like the most historic time that I have ever lived consciously. Either way that the presidential election goes, it will be historic. We have not seen stock market gyrations like this since the thirties. A Republican has just authored and approved one of the most socialist moves in our nation’s history. Again, what an amazing time. Something that really strikes me is that the citizenry is more informed than I have ever seen. I hear Obama’s and McCain’s names in conversations between people on the street, in restaurants, and in almost every other public place I might frequent. It seems like more people have an opinion one-way or another now and it is very rare to meet someone who is either oblivious to what is going on or apathetic. Don’t get me wrong, these people are still out there but it seems like their numbers have dwindled and even if you are tired of the 24 hr news channel’s minute by minute election coverage, your probably are leaning one way or another.

One big factor, which really seems to bring home this election more than the ones before it, is that it actually seems like this election matters. That real people will be directly affected by its outcome. With this consideration, I would like to mention the factors that will directly affect my life and urge you to consider them when you vote. In the interest of full disclosure, I consider myself very liberal but definitely open minded towards conservative ideas. I would hope that I weigh both sides evenly though I know that we all have a strong disposition towards seeking out views that confirm our own philosophies. One of my favorite books on the subject is Matt Miller’s 2% solution which proposes achieving a number of liberal goals using conservative means and visa-versa. Very progressive and it seems like while we are overhauling some of these institutions maybe we should look at doing it in a methodical, thoughtful way, so that we do not end up here again.

Anyways, as this blog has primarily concerned itself with my health, the issue that will affect me most is health care. There are distinct differences between the candidates that will impact my life in a very real way.

1.Pre-existing conditions. Under our current system I am basically a leper as viewed by the health insurance companies. So far, Raytheon has been amazing and has treated me more fairly than I could have imagined, but if something happens between me and Raytheon, I basically have no chance of picking up another private health care policy. There would be ways around this like if Eva had health coverage through her work and she could include her spouse or, since I have end stage renal disease (ESRD), I qualify for Medicare, but it is hard to know how much of the chemotherapy that has given me the last two years would be covered. Obama wants to make it law that people like me cannot be excluded because of pre-existing conditions. They can still make the premiums high, as I would expect and accept, but I would still be able to get coverage.

2. Opening up the Federal Employees Health Benefit Plan to all Americans. This would allow anyone to buy into the health insurance pool of the federal government. If something did happen to the benefits that Raytheon has so wonderfully provided, this would allow me to buy health insurance without having to have it tied to an employer. Now employers cannot discriminate based on disabilities, but I probably would not want to hire myself and I totally understand. I am barely productive, I need to take naps during the day, I have trouble focusing, and I occasionally would need to drop what I was doing or leave a meeting abruptly to go throw-up. All in all, I would be a horrible employee. Again Obama has presented the idea of opening up the federal pool to everyone and I like the idea of moving health coverage away from our employer-based system. This should have a lot of appeal to people who would like to start their own small business (often conservative) as leaving a big company with good health insurance is often a risk impeding that jump. An Obama administration would remove this hurdle.

Now, McCain had some decent ideas, too, but the two mentioned above trump everything else for my personal situation. Actually Matt Miller and McCain have the same idea about subjecting the benefit part of what your employer pays for your health coverage to federal taxes. McCain does give a $5K tax credit that would offset the tax burden and then give most people about a thousand dollars to spend on their own health care. In my situation, under this plan, if I lost my Raytheon based health coverage, I doubt if the $5K would cover a policy for me or if I could even get a chance to buy a policy. In this case, my chemotherapy would be a huge burden to my family and me and everyone would probably end up paying for me anyways as I would probably end up in the ER more often than now. People are not going to want to hear this but, the idea of opening up what the employer pays for your benefits to being taxed, is one way that the government could generate some revenues, hopefully they would be used to combat the spiraling costs of medical care, or keep Medicare solvent, or be the basis for some government pool that would offer health coverage to those who do not have it through their work place.

I am just about done ranting. I appreciate your strength of character if you are still with me. Just a couple more points…

We are ok with $85 billion to save an insurance company, and $700 billion (plus $100+ billion of incentives to get votes) to save our banking industry and the broader economy, yet we cannot find $5 billion to insure every single child in the richest nation on earth. That is a crime.

Fire fighting is not a profit seeking business. Why is health care? I trust my doctors, but the only way they get paid is if they perform a test or a procedure. Guess what? They have to do a whole lot of tests and procedures to make a decent living. If we applied this to fire fighting and paid them when they actually put out fires, we would either be continuously burning so that they could get paid, or be devastated by a huge fire because it was not profitable for them during “dry spells.” I don’t know how to do it, but we need to change our goal or mindset in the medical industry. We need to find a way to make it profitable to keep people healthy (without withholding needed care).

Now, being a democrat, I almost certainly would have voted for Obama anyways, but considering the reasons I mentioned above, my life would actually be more livable with an Obama presidency. You can think of a vote for Obama as just another way of supporting me but don’t worry, I won’t hold it against you if you vote for McCain. Personally, I would prefer if hope prevails over fear. That is what has gotten me this far and will, hopefully, get me through this disease. We all have our own reasons, and had the McCain of 2000 run this year, I would have had a harder decision myself. However you feel, please just vote and make your voice heard. If you don’t vote, you will share in none of the credit if things actually improve and I will blame you for the shortcomings of whichever man get does gets elected.

Thank you for enduring even more political talk, amongst the over abundance this campaign season. I invite any thoughts, comments, or rebukes to be posted. I would really enjoy hearing some thoughtful opposition.

As far as my health, I am still plugging away with dialysis and chemotherapy. We are starting to get into a routine with the dialysis and it really is not all that big of a burden. Chemo has been going fairly well though I still throw-up a few times after every session. The pump is as close to a modern version of a ball and chain as I can think of. I bit more portable but some actions just do not work very well with it- like spinning in circles or hula-hooping. It totally cramps my style.

I have still managed to squeeze in a bit of fun here and there. Eva and my folks saw Steve Forbes speak at the Bona Venture in downtown. That was really interesting. He painted a surprisingly rosy picture especially since the DOW lost over 700 points the day before he spoke. He thinks the feds are actually taking the appropriate action now that they are injecting liquidity into the banks. We will see. Eva and I have enjoyed getting out to see Religulous and W. Both were very enjoyable, though Religulous was much more provocative (and frightening). W was decent in that it did not paint Bush as a total idiot but more of a victim of those around him. Who knows what happens behind close doors but it was pretty entertaining.

Last night I was lucky enough to attend a small gathering for a woman running for congress in my own district, Debbie Cook. It was hosted by Dr. Geisse, an eye doctor that plays soccer with my father. Dr. Geisse is an amazingly compassionate man and has a particular ability to make you feel especially cared about. He was almost certainly my Grandmother’s favorite doctor (besides her son) and when my dad would stop by after soccer, she would inevitably ask…Did you win? Did you score? Was Dr. Geisse there? That said, he fully endorsed Debbie Cook and provided an opportunity for her to speak a bit and then take questions. I was very impressed. She was a nice, intelligent, realistic person who I think would do an excellent job as congresswoman. After most people had left, she took the time to answer a wide range of questions I put to her -everything from evolution to the financial recovery package to climate change to health care to ethanol. The evolution question was more to just determine a baseline of reasonable thought. I hope that my questions were not too smart assy, I just wanted to cover all the bases. A bit of accountability and questioning might have prevented some of the messes we are currently dealing with. I was very satisfied with each of her responses. In fact, I think in the ten minutes I spent with her, I heard more substance in her answers than in all of Sarah Palin’s answers combined. I think Debbie Cook faced more questions from me than I have seen Sarah Palin face everywhere except for the debate and Katie Couric. You should take a look at her if you live in the 46th district (a crazy district that includes Los Alimitos, Huntington Beach, a small slice of Long Beach, a slice of San Pedro, and a piece of Palos Verdes) at www.debbiecookforcongress.com. Her opponent, the incumbent Dana Rohrabacher, a Republican, has quite an interesting wikipedia page. Most of it is fairly understandable when read in context, but the table of contents was one of the most bizarre I have ever read. Anyways, she was pretty impressive and will certainly get my vote. If anyone who knows her and reads this, please thank her for spending a bit of time with me. Small encounters like these really bring government to life and are very interesting to me.

Sorry this has been a really long entry. Obviously I enjoy these topics very much. Thanks again for bearing with me. I hope to see a lot of you at the LA Cancer Challenge next Sunday (the 26th). You all have been so generous with your time and money. Thank you for being such wonderful people.

Take Care and Live Strong,
Tyler

2008-10-11T10:36:00.000-07:00

First off, just to let everyone know, the LA cancer Challenge 5K/10K is coming up on October 26th. Last year we had an incredible turn out and raised an amazing amount of money and this year is looking really good as well. We already have over 30 team members and have raised over $2500! Way to go everyone. I cannot fully express how touching all of your support is. Thank you so much for your generosity. I am really looking forward to seeing all of you. Again, we are still looking for ringers so please feel free to invite any friends or co-workers that you would like to. The link to our team page is

http://www.lacancerchallenge.com/faf/search/searchTeamPart.asp?ievent=264394&lis=1&kntae264394=500CD6879C444EE48F466D6D5D16E57D&team=3149367

If running is not your thing, don’t worry. I will certainly be walking and this year we will try to get all the walkers together so that we can chit chat during the race. I used to mock the chit chatters, and now I am one. Oh-well. At least I am still standing.

If walking is not your thing and you are looking for a swanky night out, the PANCAN gala is also coming up on November 15th. The tickets are a little pricey (it really is a bit much) but the last two years they have served some pretty decent food and I find it fun to get dressed up. It feels like I am pretending to be an adult. If you have cancer, the ticket price is waived so I guess that is one positive aspect of being a survivor. More information is available at www.pancan.org.

PANCAN put together a little video about pancreatic cancer that is up on youtube. I make a small appearance though I think I need be a little more animated.

Anyways, health-wise I am still doing pretty well. I was scanned last week and it looks like the cyst may have gotten slightly smaller and the mets in the liver are a little less obvious than before. All in all, very positive. Any scan with little change is really encouraging. On the current two week regimen, I usually feel like crap for the first 3-5 days and then it slowly improves so that the couple days before the next infusion I usually feel pretty good and pretty normal. I have still been throwing up pretty regularly after infusions. That is no fun. I may need to go back on the super calorie diet, as I am a little light on the scales these days. Depending on how much excess water I am carrying, it will end up either in my face or my ankles though the last few days my ankles have been fairly normal for most of the day. If I keep my feet elevated for good portions of the day, I can usually keep the edema to a tolerable level. If I spend all day standing or sitting with my feet down, by the evening my ankles look like the ankles I would imagine a 350-pound man would have.

As far as activities, I had a really good time with some of my college buddies last weekend. We all met up at Pesto’s place down in Newport. Talk about nice digs. It took about 5 minutes before a political discussion erupted and about 7 minutes before Tom and John started wrestling. The guys are always a wonderful distraction and everyone seems to be doing really well. The guys except Pesto were accompanied by their significant others which was really nice so that I had somebody to talk to while the guys were wrestling. I never really wrestled, even when I was living in the trackhouse. I guess it may be just a bit too homoerotic for me. As usual, Coffee managed to use pressure points to his advantage. Here, Coffee, John, and Tom are playing a bit too close to the water’s edge.

Both Saturday and Sunday we spent some time on the sand, which was just so nice. I would have liked to go into the water, but the waves were pretty powerful and breaking right on shore. The color was amazing.

This did not stop Coffee, Tom, and John from “reverse bodysurfing” where they would wait for the wave to break, then lie down and let the water sort of pull them into the ocean. Essentially, a great way to get sand in every orifice. Much to our surprise, Tom arranged for us to attend the symphony at the Walt Disney Concert Hall on Saturday night. We debated whether the impetus for the symphony was Tom wanting to get as much use as possible out of the suit he had made for himself in Beijing or Tom wanting to impress his new girlfriend Shannon. I think I am leaning towards the latter. The LA phil performed brilliantly, as expected, though I was going a little nuts trying to find where the snare drum was when they played Bolero (hidden between the basses and the cellos). After the concert we got a late dinner at Kendell’s, beneath the Music Center (thanks Dad). It was really tasty though this was the second time I got tricked by the shrimp and avocado salad. I always think they will include lettuce and it really is just shrimp and avocado.

This week was the first full week that I was dialyzing at home again. I am getting more comfortable with starting my own lines and my button holes are coming along nicely. I don’t want to jinx it, but I have been getting a little better and the squirting has eased up a bit. It’s a good thing, too considering that we have white carpet. There was a little excitement yesterday when I was accessing my fistula with my father. I got both needles in ok, but then when I was securing my venous line, I accidentally nudged the needle and it came out. Luckily, there was gauze over the needle all ready and as it started to soak the gauze I just applied pressure and stopped the bleeding. That was a new one. We did not practice that during training. Then as I was applying pressure I was wondering how I was going to create a venous access so that I could proceed with dialysis. For a brief minute we pondered whether or not I could remove the gauze and stick myself really quickly before I bled too much. Yeah, that did not sound like all that great of an idea so we just waited until I had clotted and the bleeding had stopped and then I stuck myself like normal (well, normal for me I guess). After the excitement had subsided, everything went smoothly. The fistula really is an amazing concept. My button holes are barely noticeable yet they get stuck with 15 gauge needles four times a week. I was wondering with my father whether or not there might be a cost benefit to giving drug addicts fistulas and creating button holes to prevent infections and keep them out of the ER. Now that would be a pretty progressive policy. I don’t really see it happening anytime soon.

A big guy in my life over the last few months has been my Home Hemodialysis training nurse, Richard. He trained me to use the Nx Stage system through both my perm-a-cath and my fistula and has become a great friend. His calmness and thoughtfulness made a potentially scary situation (stabbing yourself) very manageable. Thanks Richard!

Here is a pic of the two lines coming out of my fistula. Fun, fun, fun.

Yesterday, after dialysis, my father and I went to the Page museum in Hancock Park. It was a really nice little outing. The museum is small enough that I had no problem walking around the whole thing and it was really enjoyable as it brought back a number of memories from when I was a kid. I still love raising the poles in the tar that gives you a sense of what it would be like if you accidentally stepped in tar. The mammoth skeleton is really impressive and seeing the people actually working on cleaning up fossils was pretty cool. There is something of a fishbowl laboratory where you can actually watch archeology in action. It is just so tempting, though, to taunt the paleontologists who are working. It took a fair amount of restraint to not press my mouth against the glass and inflate my cheeks or lift up my shirt and press my nipple against the glass. I just wonder how they would react. Would they be shocked and possibly drop the specimen they were working on or do they get yahoos like me all the time and by now, it doesn’t even phase them any more. After the museum, my father and I had a wonderful later afternoon meal in the outdoor patio at Marie Calendar’s next door. As we sat there enjoying our happy hour pizzas in the warm sun on a cloudless day, you would hardly even know that the financial world was imploding. Again I just feel incredibly lucky to still be doing very well and am very grateful for the wonderful support from my wife, my parents, and Raytheon. All have done so well by me and I am in each of their debt.

Today, I had an infusion at Dr. Isacoff’s. It was the usual routine of running down my status, checking the blood, and then dripping the chemo. Usually by the time I go in for each infusion I am feeling pretty good so I was wondering, if that is all Dr. Isacoff sees, he probably thinks I just feel great all the time. I should give him an update a couple days after an infusion and I would not be surprised if I got a little puke on the form. Just a little disclaimer-I am writing this post infusion and I did feel like crap about an hour ago so I took a couple oxyir and now am feeling pretty nice between little spells of nausea. I hope this entry is coherent.

Again, I am really looking forward to seeing a lot of you at the Cancer Challenge. Thank you also to those who will be there in spirit. I hope that everyone is doing well.

Take Care and Live Strong,
Tyler

Summer update

2008-09-15T22:14:00.000-07:00

Well, it has been a long time since I have updated. Sorry, about that. I have just been slacking though I suppose I have a few pretty decent excuses. Sorry about the lack of pictures. I have not been taking many recently but will try to find a few in the next few days. As far as my health, I am doing pretty well. As well as we could hope for considering everything that has gone on. I think that around my last entry, around May, I had stopped plasmapheresis but was continuing on dialysis. I am still doing dialysis though we have made a few adjustments and it is not quite as much of a burden as before. Right around May, I also started back on chemotherapy though we have tried to limit the drugs to those that won’t do further damage to my kidneys.

Because it has been a while, here is a little summary for the year. In February, I came down with Hemolytic Uremic Syndrome (HUS), which was caused by Mitomycin C (a chemotherpay). This syndrome causes your platlets (the part of the blood that helps it clot) to clump up and stick to the walls of your capillaries. Then, as your red cells go by, they get sliced up. All this debris ends up in the kidneys and can cause them to shut down. When your kidneys don’t work, you have trouble processing water, controlling your blood pressure, and balancing the electrolytes and minerals in your body. To stop the HUS, you need to exchange your plasma to try to get rid of the antigen that is causing the clumping. Dealing with the kidney problems invokes dialysis. We seem to be out of the woods, HUS-wise (though I am still a bit paranoid that it might come back) but my kidneys do not seem to be recovering. There was a chance that they would heal and start working again but it seems less and less likely that they will wake up.

One big improvement in my quality of life was that I have started doing dialysis at home. If you have a decent amount of dexterity in your hands and average vision, they can actually set you up at home. The machine is not all that big, it occupies a spot next to my comfy chair by the bookcase, but the supplies take up a lot of room. The first delivery was basically a palette of stuff. Like at Cost Co, that kind of palette. After a few weeks of “the box corner,” Eva and I went to Ikea to find some storage solutions. It is amazing how much crap you can put away in the right shelving system. Go Ikea! The huge advantage of dialysis at home is just the flexability. Before starting at home, I had my slot at the dialysis center, so every Monday, Wednesday, and Friday at 3:30pm, I had to be in my chair. Now, I just have to get 4 sessions done every 7 days and I can do them whenever I want. If Eva and I want to do something in the afternoon, I can dialyze in the morning. If we want to go somewhere for the weekend, I can sort of piece together a few days by doing a few sessions in a row. It is really liberating to determine your own schedule, well, as liberating as it gets as a dialysis patient. Another huge advantage is the feeling of self-empowerment. I enjoy participating in my own health care. It makes me feel like I am contributing to my own well-being. Some of the nurses in the center have stories about what they call “dialysis crazy.” A lot of people get fed up with going to the center and having to be cared for and end up lashing out at the nurses. Next time you are in a center, look around for the big nurse that is usually there to keep things under control. Hopefully, dialyzing myself will prevent “dialysis crazy”. Eva is too cute to be yelled at.
Another big change is the access that is being used for dialysis. Since February, I have had a perm-a-cath (two tubes coming out of my body that go into my right jugular vein to allow blood to leave and return to my body). In July, I underwent a minor surgery to create a fistula in my left arm. A fistula is where an artery gets connected directly to a vein, bypassing the capillary system. This allows for some fast blood flow and is used for dialysis. Since most of my veins were thrashed from my first year of chemo, they had to use my basilic vein (the one on the outside of your forearm). They cut down the back of my arm, move the vein to the inside of my forearm and hooked it up to an artery. When you feel the spot where they joined the vein and artery, you can feel where the blood flow goes turbulent and can tell that the blood is just rushing by. “How will this be easier than a couple tubes?” you might ask. Well, at first it is not. Each time you access it, you have to stick yourself with a needle, a big needle (15 gauge). The size is similar to the lead from those big pencils in elementary school. Needless to say, this can get a little messy. I have ruined one shirt and almost passed out a couple times. I can handle seeing my own blood but a couple times it has been a lot more blood than I would have liked and I got a little lightheaded. Eventually, by using the same hole to access the fistula multiple times in a row, you can create a buttonhole, something like a pierced ear. After the buttonhole is created, you use blunt needles and it, apparently, does not hurt to access your fistula. Aside from being less likely to get infected, the big draw of a fistula is that it is ok to go into the water. I have not been submersed in water since February. No ocean, no surfing, no waterskiing, no pool, no baths (aside from sponge baths), no showers (without a bunch of preparation and plastic covers). People do not appreciate the simple pleasure of water. Because my fistula is looking good and we have had no problems accessing it over the last two weeks, I was supposed to get my catheter out today. Unfortunately, the surgeon was held up with complications during another surgery so it got pushed back to this Wednesday. It really would not have mattered because I am on a 5Fu pump (chemotherapy you get to take home) that is going into my port-a-cath, which would have prevented water play anyways. Hopefully things will come together and I will lose the perm-a-cath on Wednesday and get rid of the pump on Thursday and maybe go into the ocean this weekend. I am not sure how long my body will need to recover from getting the catheter out. They told me that they remove it in the office and basically just pull it out. I am a little worried that I will be on the floor with the surgeon’s foot on my shoulder as he yanks the tubes out of my body. I am sure the technique is a little more refined.

Otherwise, my body is doing ok these days. I have good days and bad days. On good days, you almost cannot tell that I have cancer and failing kidneys. On bad days I feel pretty miserable, throw up, don’t eat much, have huge ankles (retain water), and probably don’t do much more than guard the couch. I have thrown up more in the last few weeks than ever before in my life. Luckily, Eva has given me a few tips like relaxing my throat when it comes up. I used to and am still a pretty violent thrower upper, but relaxing tends to make the episodes a bit more tolerable. A couple nights ago I slept through the whole night without getting up to pee, which was a first in about 10 months. That was sweet. My average is probably about 3 pit stops per night – not very restful. Eva and my parents graciously listen to my complaining and take wonderful care of me. I could not imagine going through this without Eva. She is so solid. Like everyone, we have our quarrels (most are purposefully started by one or the other), but I love her more than anyone can imagine (probably more so when she is baiting me).

I have been pretty busy keeping up with doctor’s appointments, so I have not been able to have all that much fun out and about. Eva and I did get down to Temecula for a weekend and also up to Ventura. I hit a couple dodger games, have seen some friends, and fished a few times. A number of times, Eva and I would go to the beach and I would watch her surf. She is coming along really well and I cannot wait to get back into the water with her. That has been my main goal over the last few months. Get back into the water. When we go to the beach, I am like the little Granny on the sand – all covered up with an umbrella and blankets. I try not to scare the kids but sometimes they are just a little too timid around the beach hermit. When I am not on the pump, I have been feeling well enough to ride my bike as Eva runs. Recently, we have been getting into Jeopardy and the competition is pretty fierce around here. If you decide to join us, make sure to bring your A-game and don’t feel bad if you go home negative. One last little activity that Eva and I have been doing have been the LA World’s Affairs Council lectures. We saw the head of JPL speak about the Mars rover and then Vincente Fox speak about US-Mexican relations. It was really amazing. Eva thought Presidente Fox was a little unkempt. I guess that you do not need a perfect haircut to run a country. All in all, life is pretty good. Hopefully, getting better. I hope that all of you have been doing well. Thanks for all the comments and the gentle prodding. I will try to write more frequently. Your support continues to mean so much to me.

This is just an initial heads-up, the Hirshberg cancer run is coming up on October 26th. We are starting to get a team together and it would really be wonderful to see a few of you out there. We won the team competition last year, so expectations are high. We welcome all ringers. Start training now. Don’t worry, if you are like me and just hoping to survive the 5K, we will also have a group of walkers that should be formidable in their own right. My dad has created a team page so please join our team if you are going to do the run. I hope that the following link gets you there…

http://www.lacancerchallenge.com/faf/search/searchTeamPart.asp?ievent=264394&lis=1&kntae264394=4F6930097A084668B0CB30E9191211F5&team=3149367

If that does not work, go to www.lacancerchallenge.com, look to the right of the screen for “team rank” and click “more>>”. Then scroll down to Team Tyler and click again.

Again any support is appreciated and we had a pretty good time last year. Tell your friends, all are welcome.

Take Care and Live Strong,
Tyler

4-23-2008 My Birthday

2008-05-31T17:06:00.000-07:00

The last few weeks have been a little mellower as I finally got off of plasmapheresis (and hopefully I will be able to stay off), which freed up about 20 hours a week. I am still doing dialysis 3 times a week and occasionally going to Dr. Isacoff’s office for one thing or another, so I still spend a fair amount of time at UCLA. Even though I have more free time these days, I still have not had all that much energy or ability to do stuff, but at least I have been able to spend more time doing nothing at my apartment. One little adventure was my birthday, which is below. A special thanks goes out to my Mom and Pop and Eva for an amazing day. Below the birthday post is a little recap of the past few weeks.

Wednesday, April 23rd, 2008

Amidst the monotony of doing plasmapheresis five days a week and dialysis three days a week, I did manage to break out a bit on my birthday. Of course, scheduling was tricky, but somehow, we managed to pull it off. I began the day by going to plasmapheresis at 8am where I was pleasantly surprised by the plasma team who had gotten me a cake. It was quite tasty - nothing like a good dose of chocolate at 8:30 in the morning. It was really amazing how close I got to all of the plasma nurses over the course of my treatments. I guess we were all spending quite a bit of time together. It turns out that it was another plasma patient’s birthday on the same day so the team had gotten him a cake as well. It did not take long before the nurses were taking cake samples back and forth between patients and caregivers and staff.

After the little celebration at UCLA, Eva and I hopped into the car and headed down to San Pedro. One of my favorite destinations is Catalina and it had been a little hard to work out the logistics of a trip when I was spending 6 days a week at UCLA. One way to make it work, would be to cut down on the travel time. To that end, my generous parents sprung for the chopper ride over to the island. Now this is the way to go. Everyone knows how much I love taking my father’s little boat over, but I have to say, this was pretty sweet. It is just so easy. You just show up, check in, hop on, and 15 minutes later you are there. The ride is a little smoother, too (and little is a bit of an understatement). When we booked our time, we were told that Eva and I would head over at 1pm and then my parents would take the chopper at 2pm but a change of pilots took the total weight down enough to allow us all to go on the same flight across. Eva and I chuckled as we imagined some huge pilot that only allowed for a couple passengers. It must be tough to know that your belly is cutting into your revenue a bit. Maybe he was just big boned.

Well, before we knew it, we were on the island. My parents also generously sprung for a room in the Inn at Mt. Ada, Wrigley’s former residence. They picked us up at the heli-port and took us up the hill. My dad and I had had breakfast up there a little over a year ago but this was the first time Eva or my mother had been up there. When you get there, they give you a little tour of the place and basically give you the run of the house. The rooms themselves are amazing, but also all the common areas are just really inviting and relaxing. A favorite of most guests is the pantry, which is stocked with beer, wine, soda, snacks, ice cream, and other food that is just always available whenever you want. When we were being shown around, a few people were reading and one woman was asleep in a chair, which was a testament to the relaxing vibe of the place. The views from the balcony, and the rest of the house, are spectacular. It is like you are perched above Avalon. It you have the means, I highly recommend spending a night or two there. My folks tried, but unfortunately there were no other rooms available at the Inn for that night (they only have 6 rooms) so they ended up staying at the Zane Grey, which was on the other side of Avalon. Another perk is that each room comes with its own golf cart to get around town. Eva and I drove them over to their hotel, which was a little adventure in itself. I got a little nervous when the cart was leaning as we were going around some of the curves on the way down from the Inn.

My activities have been a bit limited, but one thing I can do is eat and that seemed to become the theme for the day. Breakfast and lunch are included with the room and even though we got there in the afternoon, they cooked us up a nice little burger that Eva and I split. Did I mention that we had already had lunch at Ports O’Call before the chopper ride – a bit of a seafood extravaganza. We had our late lunch out on the balcony and as we were eating and enjoying the view, I thought I recognized a voice behind me. I was not 100% sure but then I heard a few familiar names and it turned out to be Nancy Bell, the wife of my father’s former partner, Jim Bell. The Bells have a place in Avalon and she had come over with a friend and they decided to have lunch up at the Inn. Eva and I said hello and each got a big hug and then caught up a bit. We all found it pretty funny because this is the second time we have run into each other at random lunch establishments. About a year ago, we got seated at a table right next to Nancy and Jim at the restaurant at the Getty. Small world, I guess.

After lunch, Eva and I had aspirations of a horseback ride but, as we had missed the last ride, we were perfectly content just enjoying the room and napping and reading a bit. It certainly is a nice way to live. Eva and I are very happy with our current lot but it feels like we occasionally get a taste of “the good life.” I think a better characterization would be that we live the good life, but occasionally get a taste of another good life, one where money is of no concern. I put on the robe and the slippers and tried to strut around the room like Heff. At 6pm my parents joined us for hor d’oeuvres. It was a shame that Eva and I do not really drink because the bar was serve yourself and open during the whole stay. At the slightest inclination, you could just take a couple bottles of wine to your room or just enjoy them in the living room or wherever. We sat and watched the sun go down over the hills to the west of Avalon and mused over the little snacks. One of the offerings were bacon wrapped crackers. I had never seen that before. I had one and probably exceeded my entire daily sodium allowance with the first bite. After we snacked, talked, and sat a bit, I brought up the possibility of
dinner. I think my folks and Eva were pretty content with the late lunch and hor d’oeuvres but they were certainly willing to indulge me on my birthday. We all got into our sweet ride and made our way down into Avalon. The city was not exactly hopping on an off-season Wednesday night and our first choice was actually closed at 8:30pm. Luckily, there was one restaurant open just about a block away. I guess Avalon is not all that different from Two Harbors where the bar stays open as long as someone is still buying drinks. If that stops at 7pm, the bar closes for the night. Anyways, the eating bonanza continued and we had a really nice meal at Vino Portofino. After dinner Eva and I dropped the folks off at their hotel and then cruised back up to the Inn.

The next morning, Eva and I slept in a bit and then had a really pleasant little breakfast on the balcony again. I cannot express just how nice it was to get a little change of scenery. For the previous 2 months, I had spent 95% of my time at either my apartment or the medical buildings at UCLA. Getting out and around is such an important part of Eva and my lives and it was definitely starting to wear on me. Probably the most depressing thing about dialysis is the idea that, unless my kidneys recover (come on boys), I really cannot go more than a few days without treatment. No long camping trips, no long boat trips, no random sporadic road trips. Not that I have done any of those things recently, but it is hard thinking that the possibility of doing the trips has been removed. At this point, I can still travel, but it is going to take a lot more planning and starts to become quite a logistical challenge. With that in mind, it was just so good for my spirit to sit there, enjoying breakfast with my beautiful wife, and taking in the gorgeous views of Avalon. In a way, these experiences sort of keep my head in the game and remind me what I am fighting for. Sometimes that gets lost a bit when your see the same four walls day in and day out. Enough rambling, sadly after breakfast, Eva and I had to pack up and get ready to head out. My parents came up to the Inn and we all got a ride down to the heli-port for our return trip. The ride back was just as fun as the ride over and Eva even saw a few dolphins. Before we knew it, we were back on the mainland, and back to reality. Eva and I thanked my folks and then went right back up to UCLA so that I could do plasmapheresis at 12:30pm and dialysis at 3:30pm.

Again, we did not do all that much besides eat and hang out but it was just so wonderful to get a little change of scene and a taste of extravagance. Luckily, I really like food. I still shake my head and am amazed that we were able to squeeze the trip into the time between two plasma treatments. All in all, it was just a really wonderful and memorable birthday. I am so grateful all the people who made it so special.
-TN

First few weeks of May 2008

2008-05-30T17:24:00.000-07:00

Wednesday, May 7th,2008

I stopped by Dr. Isacoff’s office today, as I often do before plasmapheresis, just to check in on how my body is progressing. My labs from the end of the week before and the beginning of this week were looking pretty good. My platelets were up over 120K and actually approaching the normal range. Nobody wants to jinx it, but it looks like the HUS process may have subsided. There is still quite a bit of annihilated red cell remnants in my blood as my LDH was still very high (500-600, normal is under 200). It is hard to say, but the thinking is that there are residual clumps of platelets from when the HUS process was still active and that those clumps are probably still slicing up the red cells. Hopefully, my platelets increasing means that the clumping has stopped and over time the residual clumps should dissolve. Again, I do want to speak too soon, but the whole HUS ordeal was quite trying. My body has been dealing with it since February 14th and it took 2 6-day hospital stays, about 70 plasmapheresis sessions, and 32 dialysis sessions (which continue at three times a week). The medical costs charged for this little episode were over $150K (the contracted rate for the insurance was about half that and luckily my costs were just a very small fraction of that – Again, I cannot stress enough how important health insurance is. If you are young and think you are invincible, don’t be stupid, get insured!). I am sure no one will doubt me when I say that I do not want to go through all that again. Looking back, though, I generally felt ok most of the time. I have been very lucky to have only had a minimal amount of pain during this last episode and my whole journey, thus far. I also feel pretty lucky to have maintained a decent appetite. Not only is it good for me to keep my weight up, but it is also reassuring to Eva to see me pack away the calories.

Anyways, being that my labs were decent and I looked and felt ok, Dr. Isacoff decided that we would see how I would do without plasma. This was a very exciting development as I immediately realized how much more time I would have for myself. Now, I had grown very attached to the whole plasma team and would be sad to not see them every weekday, but like a lot of these healthcare situations, people are very understanding and generally encourage you to get healthy enough not to see them anymore. That Wednesday would be my last planned plasma exchange and then the plan was just to monitor my labs and see how my body could handle being off the plasma exchange.

Thursday May 8th, 2008

This was my first day with no medical obligations in a very long time (aside from the occasional Sunday). My dad had the day off and came up and we decided to go horseback riding. Now keep in mind that my whole body is still fairly weak as I have not gained back much of the muscle mass that I lost during my hospital stays but we figured that I could probably handle sitting on a horse. We were right, more or less. When you sign up for a ride, you get the option of going for the 1 hour ride or the 2 hour ride. I was a little hesitant about spending 2 hours on a horse as I remembered the pain from the last 2 hour ride, but how could I say no when I saw that excitement in my dad’s eyes? The 2 hour ride takes you from the stables on the Hollywood side, up into Griffith park and to the top of Mt. Hollywood and back. There were still a fair amount of wildflowers around which made the park really pretty. The ride was not much more than a walk on horseback but I still just love being on top of a horse. I just chuckle to myself when I am up there. The view from the top of Mt. Hollywood was ok though fairly hazy. We did have one moment of excitement when a couple runners came out from behind a bend and startled the horses. Both my father’s horse, and my horse jumped just a bit and then ran a few quick steps towards the other side of the trail. Somehow, my father and I managed to stay on the horses so we counted that as a victory for the day and then proceeded very cautiously down the hill. By the end of the ride my ass and my knees were in such excruciating pain. My butt is lacking the padding that it once had and my legs were just not used to being bent in that position for so long. During the last stretch I was wondering if I would have the physical strength to get myself off of the horse. In my head, I was trying to figure out alternative ways of getting me off of the horse without having to resort to a little crane picking me up by my britches. When we finally got back to the stables, I focused and gathered my strength and was able to get off of the horse under my own power. I was really glad I did not lose face in front of the cowboys. It felt really good to do something fun on my first day free from plasmapheresis – one little baby step towards normalcy.

Sunday May 11th,2008

On Mother’s Day, Eva and I cruised down to San Pedro in the afternoon for a little BBQ for my mom. It was really good to see the folks, even with all the time we are spending together these days. My dad outdid himself, as he often does and served up quite a meal. Eva is so wonderful and put together a few little gifts for my mom and I picked up a very decadent Belgian Brownie from a little bakery in Beverly Hills. My mother, in a testament to her spending her time how she likes to, started a little project for Eva creating a pattern of a dress from the actual garment. Eva really likes the dress and was hoping to recreate it with some new fabric. It was really touching to see my mother really enjoying the process and Eva was excited that the dress will see another incarnation.

The few weeks between then (5/11) and now (5/24)

Again, I do not have all that much free time but I have managed to get out and about a bit. I have been on a few bike rides recently and can actually keep up with Eva if she runs at a fairly slow pace. The day after Mother’s day, I took the cruiser out and went maybe three miles on fairly flat ground. That may not seem like much, but on the cruiser, the tiniest little incline requires an incredible amount of strength. I sort of felt like a weak little dork as I was struggling to pedal hard enough to get up this really small incline on the street below my parent’s house. Yeah, there was no chance of getting up my parent’s hill. I even had trouble pushing the bike up the hill. Luckily, my strong wife came to my rescue and pushed my bike up the hill – how embarrassing. Here I am taking a little break at the halfway point. I love to nap these days.

Eva and I have gotten out to Holmby a few times and played a bit of golf. Her game is really coming along and she is definitely ready to start hitting the regular par 3 courses and I even think she would do ok on the full length courses (though that maybe a little premature as the tee off on the first hole would basically be the first time she has swung a driver). At Holmby, she will very often get a handful of pars and one or two birdies are not all that uncommon. The last round we played, I still edged her by three strokes, but I fear that my time is coming. I just hope her victory dance is not too over the top.

On Saturday, the 17th of May, I convinced Eva to go to a track meet with me. The meet was the Adidas Track Classic at the Home Depot Center and had a decent field of professional athletes. It was really hot but just barely tolerable at the top of the bleachers where there was a slight breeze. Some of the highlights of the day were a number of “fastest in the world this year” times including the top four finishers in the women’s 3k, seeing Lagat run a 3:35 1500m, and seeing Jenn Stuczynski set an American record in the women’s pole vault. It will be interesting to see how many of the athletes that we saw compete, will make it to Bejing. In the middle of the meet, they had a kids 80m dash. That was pretty cute.

It had been a long time, but last Thursday, I actually got out on the water and did a bit of fishing with my dad. It was a little breezy and there was a decent swell so we opted to stay inside the harbor. We fall into the lazy fisherman category, so we really did not get onto the water until about 10:30am. I guess all the fish had already eaten by the time we got out there though we did manage to avoid getting skunked by bringing in one small Calico Bass. We let him go and a bit later decided we had had enough and went for lunch at the Chowder Barge. It was surprisingly empty when we got there though it was a little amusing to see one guy at the bar with a big pitcher in front of him, watching Jerry Springer. My dad and I joked that this may very well be this guy’s perfect afternoon. I am always impressed by people who figure out what they want and make it happen. Well done boat man. After lunch we cruised back to Cabrillo, pulled the boat, and once it was washed we found our spots on the couch and in my dad’s chair and crashed out. There is just something about the water that takes it out of you. All in all, it was a good day.

Otherwise, I have just been doing the dialysis thing and hanging out at the apartment. Eva and I watch a lot of movies. I get the impression that she thinks it is not all that productive, but I try to think of it as taking a survey course in film. At least that lets me sleep at night (and if I cannot sleep, I just go watch another movie). Dialysis is becoming like a little routine, and because I do not get benydrhl, I actually drive myself there and back occasionally. That gives me a little sense of independence, which is nice. My labs have been pretty decent, and as long as I take my phosphorus binders, my diet has returned to being fairly normal. I still have to limit my fluid intake but not quite as much as at the beginning. Eva has put the kibosh on a few foods that my system just really cannot handle – burritos, quesadillas, McDonalds, and anything really greasy. I guess it gets through my system, but the evening afterwards is not very pleasant for either of us. Oh-well.

-TN

5-09-2008 Recap of the last few months - Scroll Down

2008-05-14T09:10:00.000-07:00

So I did a bit of a summary of the last few months and it ended up being a little lengthy. The post is beneath the Wildflower recap so just scroll down. Maybe get comfy first and I hope you enjoy. A bit of a warning, there are a few pictures of my perm-a-cath (don't worry, it is not a catheter that I pee through) so if that makes you squirm, just be ready. Otherwise, I hope everyone has been doing well and I hope to catch up with all of you very soon. I have sort-of been out of commission, but I think things are hopefully coming together again.
Take Care and Live Strong,
Tyler

5-03-2008 Weekend of Wildflower

2008-05-08T00:10:00.000-07:00

It has been a while since I have posted. Sorry about that. I have been and am still dealing with some new health obstacles. I will get into that later, but for now, I wanted to give a little summary of the weekend.

This last weekend was the Wildflower Triathlon. It is a little more than your run of the mill triathlon as it serves as the collegiate national championships, offers a half-iron man, a mountain bike sprint, and Olympic distance events, and draws over 7000 competitors. There was plenty for the 30,000 spectators too, as they had a festival with all sorts of vendors, food, and even a few bands. Just to give you an idea, here is a shot of the transition area. Don’t forget where you parked your bike.

About a month and a half ago, a couple buddies from college, John Burke and Tom Allen, had been talking a bit of trash, as they often do, and John mentioned that he was going to do the half-iron man at Wildflower. This sounded cool but was not all that surprising as John has done a few triathlons at that distance and is in pretty decent shape these days. He works out and takes good care of himself. Well, for some reason, Tom said something to the effect of, “Half-iron man…huhh… whatever. I could totally do that.”
John replied, “Well, lets see it big boy.”
“Well, allrighty then. Maybe I will.”
And from this little interaction, the idea of doing Wildflower was born. Immediately, the question of whether or not Tom could make it was raised. Now even though it is only half of a full ironman, it is no meager feat to complete one of these races. It consists of swimming 1.2 miles, riding the bike 56 miles, and then running a half-marathon (13.1 miles). The winners have been known to finish the long course in under four hours. Tom would say this is unfair, but I would consider Tom getting through the race without an ambulance a victory.
To add another aspect to the race, Tom and John decided to rally friends and family around the race and try to raise some money for PANCAN to help fight pancreatic cancer. I was really touched that they would do something like that for me and they were really successful. They managed to raise over $5,000 dollars in just a few weeks. I was amazed with how well they did considering I would occasionally have to wrestle the rent out of these guys when we used to live together (and trackhouse rent was not all that much money). The fundraising page is still up and if anyone else would like to contribute, just go to

http://www.firstgiving.com/teamtylern

Any support is greatly appreciated. I personally am in debt to all of the wonderful friends and family that have supported me over the last 22 months. Just know that each of your thoughts, prayers, and actions are truly appreciated and have been the high points of a very turbulent time in my life.
Now on to race day. It had been a while since Eva and I have gotten out of town so this was a pretty exciting little outing. We drove most of the way up on Friday night, crashed for about 6 hours in a Super 8, and then were on the road out to Lake San Antonio. We had heard that Wildflower was pretty big, but nothing compares to actually being there and seeing it first hand. We managed to make our way to the start and we actually ran into one of Tom’s buddies, Scott, and his girlfriend. Scott’s brother, Eric, was there as well and was also going to do the half-ironman. Amazingly, a bit later, we saw John and Tom in the holding area before the swim. They looked pretty ready to go though John said he had never seen Tom so nervous. Luckily Tom had a smile on his face and looked pretty fit and ready to go.

Now spectating at one of these events is pretty cool, but it is not exactly non-stop action. You cheer real hard as they start the swim, then you hang out for about a half hour, then you cheer as they get out of the water and a few minutes later when they go out on the bike, then you hang out for about four hours, and then you have to choose if you are going to cheer them coming in from the bike or going out on the run (because they go in one side of the transition area and come out the other, and they can probably get from one side to the other much faster than you), and then you wait another couple hours until they finish. It is very exciting for those moments when they are going by, but you have to know that you will have to amuse yourself in the interim times. Luckily, there was plenty to do though Eva and I really just enjoyed sitting on the grass and hanging out. For the run the guys wore the Team Tyler shirts from the October Cancer Challenge. That was really touching, I just hope that after wetting his shirt, John’s nipples did not take too much of a thrashing.

After nearly seven hours of racing, John and Tom made their way across the finish line. Eva and I were exhausted from just hanging around that long which gave us an even greater appreciation for what they had accomplished. After the race, Eva and I took a little dip in the lake and then a number of us went back up to their campsite and had some dinner together. Seeing the excitement on Tom’s mother face warmed my heart. You could tell how proud she was of her boy. Some props need to go out to John for being a good partner and biking and running with Tom as well as to Chris for riding with Tom as well. Looks like none of those penalties got posted. It’s not drafting if you don’t get caught. Also, props goes out all the people who made their way to remote Lake San Antonio just to cheer on a couple of crazy guys. All in all, it was a beautiful place, the whole event just had a nice vibe to it, it was great to see old friends, and awesome to see Tom and John finish so well. When someone asked Tom about next years race, he replied, “Never again.” We will give him some time and see what happens.

Here are just a few of the support crew, braving the sidelines.

2-14-2008 through 5-09-2008 Recap of the last few months

2008-05-04T09:18:00.000-07:00

Well, it feels like the last three months have just been a blur. I cannot believe that it is already May. It seems like just yesterday I was just plugging along, working a bit, making my way slowly back to a relatively normal lifestyle. We sort of had a little hiccup. Actually, we are still dealing with the effects and though things seem to be coming along pretty well, it was a big reminder of just how fragile my health is. The last few months have had some of the scariest moments of my journey thus far.
It all started back in February, the week of Valentine’s Day. Looking back, Eva and I had recognized that I had been having a bit of trouble breathing and that my energy was kind of down but it had happened so slowly that we really had not noticed. I had gone into the office that Wednesday and worked a full day as I had soccer that night. In the evening, I made my way over to the employee store to get a snack and decided to take my blood pressure on the automatic machine right there. I had a bit of trouble adjusting the cuff and when I did the test, it got really tight, to the point that it was painful. I canceled the test, readjusted the cuff, and tried again. This time, I sat through the pain and the reading came back 230 over 140. My whole life, and even during chemo, I was always right around 120 over 70 and so I just shook my head and figured that the machine was broken and did not think much of it. I went and played soccer that night. I was not very useful on the field as my lungs prevented me from doing much running. I just stood in front of the goal and tried to deflect as many shots as I could. We did all right but ended up losing 2-1. Not all that bad for being a man down and for me being basically a stationary player.
Thursday was Valentine’s Day and I, being the beacon of preparedness, had yet to actually purchase the gifts I had in mind for Eva. I worked my last few hours for the week in the morning and then ventured off to the Beverly Center. I picked up a few things and then made my way back to the apartment. On the way back, I noticed that my ankles were fairly swollen. They were almost hanging over the edges of my shoes. That was odd. Later Eva came home. We had been planning on doing the run/ride thing to the fountain, but I mentioned that I might only be able to go half way. She asked why and I showed her my ankles. She was a little shocked. I had a scan scheduled for Friday morning so just figured that we would stop by Dr. Isacoff’s office afterwards. We called my father and then, though I was reluctant, she, smartly, got me to call Dr. Isacoff that evening to see if there was anything we should do. He said to raise my feet and to come by after my scan the next day.
Friday morning my father picked me up and we went to UCLA for a CT scan. I had had a rough night as I had a bit of trouble breathing (we would later figure out that it was because I had fluid in my lungs) and it felt like my heart was just working really hard. It was just pounding and skipping beats and sort of freaking me out. It was not painful or anything, but it felt like my heart was trying to break out of my chest. In the morning, I generally felt OK but I did not want to have many more nights like that. This was probably my 6th CT scan so the procedure was pretty routine by this point. The scan went smoothly and then I went over to Dr. Isacoff’s office. We met and chatted a bit in his office and then he did a quick exam and took my blood pressure. My diastolic was over 200, he gave me a look, and I knew I would be going into the hospital. My dad related the “broken” blood pressure machine story at work to Dr. Isacoff, and he gave me another look. One that each of us has seen at one point or another, that made me feel about 2 inches tall. We all had a good laugh and it sort of became the joke of the day.
My father and I walked over to the emergency room at UCLA. I felt a little funny walking into the emergency room but I guess I got over that. We actually got all the paperwork filled out and I got into a bed pretty quickly. I was impressed. They put all the little monitors on me and then the flurry of testing began - an EKG, ultrasounds of my legs, ultrasounds of my kidneys (twice), and a CT of my head. It was a full day. Early in the day, they had given me this spray to try to bring down my blood pressure. They say that if it gives you a headache, the spray is still potent. Well I got one major headache but my blood pressure stayed up in the 180 range. That headache made most of the afternoon and the evening fairly unpleasant though I was amazed at the care I received. I must have seen about a dozen different doctors, interns, and residents. My father was with me for most of the day and then, after work, Eva came over and stayed pretty late. I cannot tell you how much strength having my wife around gives me. I know it was hard for her to see me in that state, but it was comforting to see how well I was being taken care of. At one point, I started feeling a little funny, and then I threw-up. The last time I had thrown-up was my first day on the Isacoff weight gain diet when my body just was not ready for an ice cream sandwich. I am a pretty violent thrower-uper, but I managed to get it all out and calm back down. Sometime around midnight, a bed opened up on the cardiac floor and I was wheeled up. I thought I had enough strength to pee on my own, but it was a pretty long pee, and I got tired, and then when I sat down on my bed, I threw-up again. I think it kind of freaks out the nurses when the first thing a new patient does is pee, get exhausted, and throw-up. Oh-well.
On Saturday, I had an echo performed and my heart looked pretty good, but it was working really hard as my blood pressure was still really high. In fact, the next few days would be spent, pretty much continually, increasing my medicine until my blood pressure was finally brought down into a reasonable range. Dr. Isacoff had a few words of encouragement for the cardiac team to meet that end. He does not always display the best people skills but it is nice to have someone like that in your corner. Things just seem to get done quicker. They had suspected it on Friday and by Saturday, the consensus seemed to be that I had Hemolytic Uremic Syndrome (HUS). I had never heard of this before but it did not sound good. Of course, I wiki’d it and found that it is a condition where your platelets clump up on the walls of your capillaries and slice up your red blood cells as they go by. As a result, you platelet and red blood cell counts plummet and all the sliced up red cell remnants end up clogging your kidneys. When your kidneys start suffering all sorts of things happen. Your blood pressure goes up (in my case, way up), your body cannot process fluid, by-products start accumulating in your blood which can cause you to feel pretty bad, and on and on. It turns out that the culprit was almost certainly Mitomycin C, one of the chemotherapies that I had been getting over the last year. What is interesting about chemo-induced HUS is that the onset can be delayed quite a bit, even over a year after receiving the chemo. At a certain point, the toxins from the chemo trigger this process and then, fairly suddenly you have HUS. The treatment is plasmapheresis, which is where they take your blood out of your body, centrifuge out the plasma, and then give you new plasma. To do this they need a fairly high volume catheter. My purple power port was not going to work, so Saturday evening, a nice young cardiologist did a little minor surgery and inserted two tubes into my neck. She was a little hesitant about the operation as my platelets had fallen to around 40,000 but she pulled it off and everything looked good. The next day, they hit 17,000. I wondered if I would make the top ten list for people with the greatest range on their platelets – 17K here and almost 1 million after the splenectomy. Within an hour of the little operation, the tubes were in use and I was getting my plasma exchanged.

Check out the plasmapheresis machine. On the left are about 12 bags of plasma that would be replacing my plasma. I was and am so thankful for the wonderful people who donate blood.

My hospital stay continued through the following Friday and was pretty pleasant. I had incredibly caring nurses that took great care of me and were just amazingly nice. My roommate was a bit of a character - a salty old fisherman that would give the nurses a bit of a hard time. I could not help myself from laughing but every time someone would come in and ask him how he ended up in the hospital, he would just put it out there for them in a big, not gonna take any crap, old man voice, “Well, I ran over myself.” This would usually get a pretty surprised reaction from the inquirer and then he would elaborate. I guess he had parked his car in his driveway, which is on a bit of an incline, and forgotten to set the parking brake. He got out and made his way to the back of the car (I think it was an SUV) and then the car started to roll. He jumped around to the side and shut the driver’s door to prevent it from being pried off on a pole and then tried to reach in through the driver’s door to steer the car as it was rolling back down the hill. Well, he sort of got off balance and ended up turning the wheel so that the front of the car started coming towards him and ended up running over his foot. Then, he was dragged by the car down the incline, and across the street. The car was brought to a stop by a fire hydrant on the opposite side of the street with him sort of halfway under. It is terrible, but I cannot help to smile as I picture the whole episode in my head. I don’t think the hydrant sent up a geyser of water but picturing that is even a little more amusing. He was generally in good spirits and even he would laugh as he would tell it, so that makes me feel better about chuckling. Just to give you more of a sense of the kind of guy he was, doctors would come into the room to check up on him an he would greet them with, “What the hell do you want?” They would say what they were there for and he would generally be fine and amiable after that. It totally reminded me of the skipper from when I was fishing in Alaska – a salty old man and quite a yeller, but if you yelled right back, it would sort of even the playing field and then you could have a conversation.
Otherwise the hospital stay was not particularly exceptional. There was some good bonding time with Eva and my folks. The highlights were when Eva would come into the bed with me. We did not really let anyone know what was going on, so don’t feel bad if you did not get a phone call. It just seemed like this was something that we needed to deal with. There were, and continue to be, pretty scary moments. I got my plasma exchanged everyday and got to know the plasmapheresis nurses pretty well. One big highlight was a little gift that Eva brought me on the second day of my stay, an iphone. How did she know? That definitely kept me amused. What a wonderful wife. Going for walks down the hall were the adventures of the day and by day four, I had patio privileges, which was really exciting.

A breath of fresh air. What a wonderful thing. Nice outfit, ehh?

Later, my dad brought me a scarf and I was able to blend in a little more. On my way out this time the nurses made sure I was not trying to break out and head home.

Dad likes to keep it interesting.

Everything was semi-stable by the end of the week so they let me go home for the weekend with the plan that I would do outpatient plasma exchange during the week and they would just monitor me pretty closely. They sent me home with a crapload of blood pressure medicine and told me to monitor it during the day. I did not think much of it at the time, but looking back, I was a bit heavier than usual which was a little odd, especially after a hospital stay.
It was very exciting to be back home for the weekend. Eva and I just hung out. I got a shower, which was no easy process because I had to saran wrap my neck to keep the catheter dry. I tried not to scare any children when we went out by wearing a scarf to hide the protruding tubes from my neck. My ankles would still swell quite a bit but we just parked me on the couch and kept my feet up. I did not do all that much for the next few weeks except hang out and go to plasmapheresis on the weekdays. Eva and my parents would take turns taking me. Going to plasma exchange with me was not all that exciting so I really appreciate what they did. Once I would get set up in the bed and hooked up, they would give me a dose of benadryl to prevent a reaction to the plasma, and I would be knocked out. Those little naps were actually really nice. One of the best parts was that they would give you warmed blankets to make you comfy. Oh-man was that sweet. One little outing that Eva and I made was to the zoo. I could not really get around all that well but for $25, pretty much anyone can rent a rascal. I thought, “When else am I going to get an opportunity to legitimately rent a rascal?” and though I felt a little funny, it was very enjoyable and fairly hilarious. Eva did make me get up and walk through the spider exhibit, which was probably good for me, but there would have been no way that I would have made it walking around the whole zoo on my own. I could still get around, but I was just slow and would tire very easily.

On the 6th of March, I swapped out the tubes in my neck for some tubes in my chest as the neck tubes are only good for up to 21 days. The chest tubes are much easier to hide though they are still a little obtrusive. Again, showering is a whole process as I have to prep by wrapping them in plastic, try to shower with minimal use of my right arm, and then change my dressing afterwards. Eva describes my behavior like a little child. It takes a lot of prodding to get me in there, but once I am in, I do not want to get out. I have come to appreciate and relish in the wonderful feeling of showering and I actually now long for the day that I can actually submerse myself in water again. People rarely realize the simple pleasures in life like showering or being able to take a dip in a pool.

During this time Eva and I had planned on going to Prague to see Eva’s folks. Well, I was in no shape to travel, so Eva cruised over. I was pretty stable and my folks were more than willing to look after me. It was probably not a good idea to leave me alone so I ended up living with my mother for a few days in my apartment. It was definitely a change from living with my wife but it worked out really well and we adjusted to the situation. Eva really enjoyed spending time with her parents though there was a little excitement that sort of soured her trip. I let her tell you about it. While she was gone, a few college buddies came into town to keep me company for the weekend. It was great to see John and Caroline, Tom, Pesto, and Adam and Tran. We played some mean games of scrabble and, of course, there was a bit of wrestling. As always, I remained on the sidelines.

Once again, my father was very excited to break out the government issued tomato juice for Bloody Marys.

Tom always seems to have a smile on his face. You can almost feel his excitement. Enough celery for you Tom?

During my time out of the hospital, I generally felt pretty good but I was still dealing with quite a bit of fluid. My ankles would be huge by the end of the day and when I would sleep with my feet up, my face would be all swollen in the morning. Sometimes I would look like a boxer after a bout, as my eyes would almost be swollen shut. Here, you can sort of tell that I was sleeping on my left side as that side of my face is slightly more swollen. On the weekend, of the 22nd of March, it got pretty bad. I was up around 190lbs. (my usual weight was about 170lbs.) and I had a hell of a couple nights. I had been having a little trouble breathing during the night anyways but Saturday and Sunday were pretty bad. As the water would redistribute in my body from my legs into my core, it would end up filling up my lungs to the point where I could barely get a breath. I, like others who experience this, realized that if I sit up a bit, the water drains enough to enable me to breath. Usually this is done with just one or two extra pillows. By Sunday night, the only way for me to get even an hour of sleep at a time was to have about four couch pillows under my chest and to “sleep” sort of facing them. It is hard to describe but I think it looked more like I was trying to push around a bunch of pillows than if I was lying down and trying to sleep. On Monday we were meeting with Dr. Isacoff anyways, and Eva suspected that I might end up back in the hospital. She was right, and that was the start of my second hospital stay.
This time I pretty much knew the drill, and in addition to getting my plasma exchanged, I would also be getting dialysis to try to get the water off and allow me to breath. Dialysis was pretty similar to plasmapheresis, they hook your tubes up to a machine, your blood goes out, gets filtered, and comes back in. They would take off 4 liters of water in each session, which made a world of difference. Think about that, nine pounds of water in just a few hours. After the first session I could already breath easier. Eva and I were not happy that I was back in the hospital, but we both knew that I really needed this and that getting the water off would really help me. I had dialysis five days in a row, each day taking off another 4 liters. By the end I was a meager 164lbs. They had taken over thirty pounds of water off of me over the week. What a weight loss plan – no exercise, no diet restrictions, and 30 pounds in a week. Actually, this was the beginning of the renal diet, which is pretty restrictive. What was surprising was that over the previous month and a half, I had actually lost a fair amount of muscle mass just from not doing much. This loss was disguised by the water that I was carrying so once the water came off, all of my muscles were really small. When the water got out of my legs they were so skinny that I did not think they would be able to support me. I think “chicken legs” would be an accurate description. Once again, by the end of the week, I was pretty stable and was ok’d to go home. I almost had to break out as my nurse on the last day needed some convincing, but Dr. Isacoff took care of that. It was good to spend the weekend at home and the next week would be the start of spending some long hours at UCLA.
Now my weeks would consist of getting my plasma exchanged Monday through Friday and getting Dialysis Tuesday, Thursday and Saturday. On some Fridays I would also get an infusion of Retuxin to try to stop the autoimmune aspect of the HUS. Considering that plasma would take about 3 hours, dialysis about 4 hours, and retuxin about 4 hours, I was spending a fair amount of time at UCLA. Even though it probably would have been easier to just be in the hospital and do the inpatient thing, I was so thankful to be an outpatient. Just the little bit of activity hanging around the apartment kept me in such better shape than sitting in a bed all day. And though so much time was spent at UCLA, I was able to maintain some semblance of a normal life.

This was pretty much the routine for the last 5 weeks. There have been some ups and downs but it has been a fairly smooth ride. My body has had a hell of a time shaking the HUS and I am still not really in the clear. Eventually, we got me down to my “dry weight” which was around 150lbs. I am a skinny little version of my former self. It blows my mind to think that I was carrying about 45 pounds of water in my tissues. No wonder I could not get around all that well. The kidney doctor described my inability to breathe as essentially drowning – yikes. I am much more chipper these days and though I am still pretty limited on my activity level, I can at least get around and walk and stand for a pretty good amount of time. One hard aspect of the last month has been limiting my fluid intake. Again, I hope all of you appreciate how wonderful it is to be able to drink freely. Since
my kidneys are pretty much out of commission, most of what I take in has to be taken off though dialysis. I now use a little kid’s cup for my beverages and take small sips when I drink. I dream one day of having a slurpee again. Hopefully I will get there. C’mon kidneys, wake up.

Well, that pretty much brings us up to date. I cannot believe it is May already. The last three months just flew by. It is amazing how time passes when you are just focusing on trying to get your body back on track. We seem to be doing ok at the moment, but if anything, this was a reminder of how quickly things can change. Once again, I am trying to take baby steps back towards normalcy. I just have to keep my eye on the prize.

Carpe Vitam and Live Strong,
Tyler

January 2008 - Gas, Meds, and Sony

2008-01-31T19:32:00.000-08:00

I hope all are well and everyone’s year has gotten off to a great start. Again, I am sorry for the lack of updates, you have all heard all the reasons before, so I won’t go through them again. I will go through my health a bit and then do a little tribute to Sony (with pictures), but first I just wanted to comment on our evening out last night. Now Eva and I are not wild types, we have settled into the old married couple routine very well and we like it very much. The whole bar scene seems a little pretentious to us because, well, generally, you would be going to a bar to meet someone, and we are already happy with each other, so we just sort of cut the crap and end up staying in. The big exception would be in Prague, where going to the bar is very much part of the culture and is really the place where a family will go to converse, laugh, and have a good time. Hopefully, Eva and I will be partaking in some of that action in the near future though I am going to have to find another drink. They do say that Pislner Urquell can heal you, though I think I might get my entire month’s allotment of alcohol before dinner would be served, maybe even ordered (these days I go for about one beer a week – and you know that I have been waiting this week for tomorrow’s event). Anyways, though we do not often go out to bars, we do enjoy movies quite a bit and last night cruised over to Century City to catch Sweeney Todd. Spoiler Alert : in case you did not catch the singing in the previews or note that it was an adaptation from Broadway, it’s a musical. This was news to Eva and I and though I may catch some flack from some of the guys, I rather enjoyed it. I may have even sung along a bit here and there. Well, I have been doing pretty well, health-wise, over the last few weeks though I do often have digestive troubles. I really do not remember the last week where I did not have either an episode of diarrhea or constipation, usually both. Eva and I have been trying different foods and sort of figuring out what works but it is still pretty much a mystery. On any given day, we never know if it was the chemo, the medication, or the food that was causing whatever problem I am having. It is frustrating, but we manage, and she has been incredibly tolerant and kind to me. So yesterday afternoon, I was, how would you say, ummm, gassy. I was the gas man. I remember it being a little worse one week about 15 months ago, but it was still pretty bad. We had thought about the movie in the afternoon, and I was still pretty gassy at dinner, but we decided to just go for it anyways. We figured that we would sit away from other people and it would be ok. We were a little worried that it was a Saturday night and that the theater might be packed, but Sweeny Todd had been out for a while, so what were the odds that that theater would be filled. On the ride over to the theater, every time Eva would ask if I still was up for it, usually after I had unleashed another toxic little package, I was only more determined to go and see the movie. Eva did express some concern for our poor fellow theater goers who might have spent $11 on a ticket, $10 more on food, and ended up next to me, sitting through the movie uncomfortable, unhappy, and unable to even swallow their overpriced snacks. We got there a bit early, picked up some twizzlers, and then went into the theater. I never really noticed the difference in theater size in the multiplex, but today as I was hoping for a sparsely filled large theater, I found myself walking into probably the smallest theater at the AMC in Century City (it had about a third of the seats of another theater at the same complex that I had just been to). Luckily, there were not too many people so we figured that we still would be ok. Eva and I walked up to the back corner thinking that maybe people would see the couple in the back row and give them a little room to make out or whatever. Yeah, not so. Slowly but surely, the theater filled up and, even with other perfectly good seats available, it seemed as though people were drawn to us. With every couple that would come up the stairs, Eva and I would squeeze each other’s hand and hope that they would stay low and pick a seat away from us. Each time, we were let down. By the time the movie started, we had a yuppie couple one seat over to Eva’s left, three young Asian girls in the row in front of us, and what was probably a woman and her sister (though possibly lover) one seat over to my right. Well great, I was trying to keep it in as much as I could, but I really do not think that is very healthy for me. I tried to just sit as motionless as possible and hope that the little fart parade would come to an end soon. Amazingly, it did taper off fairly early into the movie and by sort of burying my butt into the seat, I don’t think that those last little packages caused too much harm. Eva and I just smiled and mused over the situation and we were both really glad that we did not call the evening on account of gas. I wonder if there will ever be a way to communicate this in a social setting and create some sort of reasonable solution. Maybe someday, will we have a farter’s and smelly guy section at theaters but then, how will we stop the inevitable stigma that will be associated with the people who nobly quarantine themselves for the benefit of others? How will we know if the poor wives who are just supporting their little gas factories are supporters or contributors, too? Puzzling questions.

To my health… more of the same, what a wonderful thing. I continue to plug away on chemo and have generally been going in about once a week for the last few weeks. I got Avastin one week, taxotere the next, both the week after, and just taxotere last week. Nothing really dramatic has happened, which is good. No hospital stays, no freaking out the family, for the time being, at least. At my last appointment, Dr. Isacoff said I could stop taking Lovenox (a blood thinner). Eva and I were not really sure what prompted this, but if he thinks it is ok, I will gladly give up injecting a needle into my body twice a day. Don’t worry, I will still get my injection fix with Iscador, it is just that now I will be giving myself one injection every two days as opposed to five every two days. Pretty amazing to think that I had been on Lovenox now for about 15 and a half months. Add that up and it comes to roughly 930 injections. Imagine if I threw a tantrum for every injection just like some kids do before getting inoculated. They were never that bad but it was always a little taste of psychological torture getting ready to give it to myself and wondering if I was going to feel nothing today, or writhe in pain for the 10 seconds of pushing the medication. For now, I will have to pay particular attention to my body and if I feel and hard veins anywhere, get checked pretty quickly. I also have a small number of syringes that I can give myself before long flights and such. Now I do not want to get too excited about this because it does not really mean anything and I also do not want to jinx it, but my marker is as low as it has been during this entire journey. I hit 94 in December and 81 in January. This marker does not correlate really well with cancer progress and it cannot be used to definitively diagnose someone, but it is not meaningless either. Eva and I are very cautious with positive news and as such we maintain a great respect for the horrible thing in my body and hope that everything just keeps going as well as it has been going. Just for some reference, a normal human’s CA19-9 is under 40. When I was diagnosed I was at 156 and at times I got up over 600. Some people’s can go into the thousands, which is not good, but it can just as easily come down. These cancers can act in many different ways, some are like bottle rockets that burn out in a bright burst of activity and others are like smoldering fires that don’t shake you up to much, but burn soft and low and long. It takes a lot of luck to survive either type. Oddly, as well as my treatment is going, I have felt pretty crappy for the last couple of weeks. Pretty lethargic - just slow and sore. My activity level has dropped a bit, possibly coinciding with the whether, and there are just some days where I feel like sh#t. Eva usually does an incredible job of dealing with the grumpy hubby and even when I really do not want anyone touching me or moving me or doing anything to me, a few feisty kisses will almost always put a smile on my face. At my last infusion, my red blood cells were low and I ended up needing a shot (same stuff as procrit, different name). I was figuring that maybe just with my reds down, that the rest of my body was not getting the oxygen that it needed.

Another little annoyance was that I had the margins taken on three moles over the last couple weeks and those wounds were a little irritating. Last December I had 6 suspicious moles taken out. Three came back as severely a-typical (the scale goes benign, mild atypia, moderate atypia, severe atypia, pre-melanoma, melanoma) and so they wanted to take larger margins. The first pass already required a couple stitches but now they were talking about a 5mm diameter chunk of meat. Of course the three could not be done at the same time because it would be too much of an impact on the body (though I think it may be more because insurance will not pay for the second or third if it is done at the same time). The three moles were on my upper back and one was right on the biggest vertebrae in my neck. Having that spot be painful and tender was no fun. It felt like I was being hug up and a coat rack by the skin on the back of my neck. Every piece of clothing I would put on would rest heavily on that spot. Every time I would lie down or even just lean back in a chair, I would put pressure on that spot. Eva got better, but would go to hug me and put her arms around my neck and I would cringe and go into a defensive stance. Fortunately, after about a week, the pain eased away, just in time for the last chunk to be taken. The doctor did a great job and all but it was still just ate at me a bit. I did resort to painkillers a few days, yeah, that was nice. Because one of the early ones opened up after the stitches were removed, we are waiting an extra few weeks before removing these. Just don’t freak out if you see my back with about 15 stitches in it in 3 different places.

What a cute couple. I keep trying to stick my chin out for Eva so I do not look chubby, but I do not think it is working.

We did not go anywhere over the last two weekends though there was a little furry surprise that added quite a little excitement to our lives. We got to take care of Sony both last weekend and the weekend before. As pets are verboten in our apartment we ended up spending both weekends down in San Pedro at the folks house. The first weekend, my parents were away in Hawaii, so Eva and I got to play house and the game was ever more realistic with that cute little guy hanging around. I, of course, do not have any real experience raising a kid, or caring for a kid, but I think that I got a good dose looking after Sony. This dog is pampered like a grandchild and because of the heightened importance of taking good care of my oncologist’s dog, we gave this dog quite a bit of attention. Don’t get me wrong, I would try to take great care of anyone’s pet who I was watching, but when the dog belongs to your oncologist, it sort of raises the bar a bit. I cannot imagine the horror that would ensue if anything happened to that dog. That said, 95% of the time Sony is amazing. He is adorable and basically can do no wrong. About 5% of the time he sort of freaks out a bit and either wants something on a counter or wants to play or just wants to annoy the crap out of you. Luckily those times usually pass quickly and then the mellow Sony comes back. I used to think that people who were so attached to their dogs were a little crazy or maybe lacking something in their lives, but I am now one of those people, through and through. I could never understand why people would talk so much about their dogs. Didn’t they have lives? Well, look at me now. Eva and I would constantly muse over the way Sony looked up earlier that day or when he ran onto the bed or whatever. Yeah that was another thing, Sony slept with us. My former self would be shaking his head. I guess I would try to plead with my former self and make him realize how nice it is to have a little fluff ball on your feet at night and how cute it is when he licks your head to wake you up in the morning. I don’t think my former self would understand. Adorably, on Sunday of the second weekend, when my parents got to share in the Sony fun, my dad asked if Sony could sleep with them that night. Eva and I smiled and I just could not believe that this was the same man that would never let Ted, our old dog, anywhere in the house except the laundry room. Sony slept with them that night and I think everyone had a good time.

Sony takes quite an interest in the outside world. One of his favorite spots was up on the couch looking out. My parents thought this was hilarious.

Here is a lethargic Tyler. Eva was kind enough to bring me Sony’s hedgehog to help me sleep better.

Turns out that Sony wanted his hedgehog and while he was getting it, he might as well plant a couple on me.

We took Sony out for a lot of walks and he can do the once around the block thing like a champ.

Going any further distance, like on an actual walk, and he, well, is not exactly up to the challenge. We would joke that Sony can go about halfway anywhere. If we were going for a 1-mile walk, he would go like gangbusters for the half mile, and then just lie down when we wanted to turn around. If we were going for a 2 mile walk, he would go strong for the first mile and again lie down at the turn around. After this had happened a few times, I wised up and brought a backpack. It was a lot easier to carry his sorry ass back home in a pack than in my arms.

I hope everyone enjoys the Superbowl tomorrow. I will be particularly stoked if I hear that anyone we know from Europe stayed up to watch it (I did last year when Eva and I were in Switzerland). Then again, when thinking about watching a 3 hour football game at 12 or 1 in the morning, maybe the highlights the next day would be just as good.

Take Care and Live Strong,
Tyler

WARNING : there are a couple gross pictures below from when I had the mole margins taken out. If you do not want to see a chunk of bloody flesh, do not look any further down. If you do, enjoy.

Here I am all marked up and ready to go.

Here is the piece they took out. It is not all that big, but still a whole lot bigger than anything you would like to be removed from your body.

Year End Thoughts

2008-01-14T23:06:00.000-08:00

Well, I am back, for the time being at least. I did not really go anywhere, I have just been left to my own thoughts more than I have been out and about and this usually leads to lapses in writing as, often in these situations, I really do not have all that much to share. My time since Portland has been wonderfully enjoyable and my health has been relatively stable and overall I had an incredible Christmas and New Year’s. Taking my cue from a number of television and print outlets, the passing of the year has served as a time to reflect over the year that is gone and to look to the upcoming year with hope and anticipation. What a year. I will have to admit that I cried more tears of joy and sorrow in 2006, but that in comparison with the other 25 years, 2007 was filled with a spectacular number of highs and lows. Frankly, I am stoked to be here. I feel incredibly lucky for the life I lead. My line, when asked how are you doing, of “Well, if they did not tell me I was sick, I would never know it.” Is getting a little old, which is really just another blessing. I am more than willing to deal with the awkwardness of situations that arise where people are surprised I am still around. Do not get me wrong, everyone I know has been incredibly supportive and it is their support that has really carried me through tough times, but if you look at the numbers (which you shouldn’t), I have tripled or quadrupled my readjusted life expectancy at the time of diagnosis. I just hope social security doesn’t find out how much fun I have been having. Oh-yeah, once again, thanks to all of you wonderful taxpayers. You guys rock! I have rejoined your ranks and if anyone ever hears me calling for a tax cut, I want you to slap me upside the head to shut me up. Seriously, I won’t be mad. It is just an interesting (and wonderful) point in my cancer journey, when you get a bit of unexpected stability. Here is hoping that it will continue.

Reflecting back on the year, I had an incredible time with friends and family and my new wife. I think we are more in love than ever. She still surprises me so often with some other incredibly cute little thing here or there. My parents have been stoic throughout the last year and supported us in all of our decisions. My new parents have been wonderful and have really gone out of their way to make me feel like a part of the family. Eva and I would not be doing nearly as well as we are without the never-ending love and support of both sets of parents. Thank you all. I also want to extend my gratitude to our solid friends and co-workers who have found the time to spend with us and make our lives easier. I returned to work part-time in August, and everyone at Raytheon made the transistion back really easy. It has been amazing how flexible they have been. I can only hope they will let Eva and I jaunt off to Switzerland again this year in similar style.

Health-wise, the year has been wonderfully dull. My scan in November was similar to August, which was similar to April, which was similar to January. Not too shabby. Here is to hoping for the similar scans to continue. That scan in January was a little unnerving as the cyst had actually grown about 10% since the last scan of 2006. That was a big blow to Eva and I and it took an even bigger toll because we were really not expecting it (in the previous scan the cyst had shrunk 50%, but that was also post splenectomy when a chamber or two might have been breached). After going through the January scan, Eva and I were much more cautious when getting the scan results and were a little more prepared for what might come. We tried to focus on the idea that I probably felt pretty good the day before the scan, I probably felt good on the day of the scan, and I probably felt good on the day after the scan. That was what was important. I have had good days and bad days after chemo but continue to be very lucky and tolerate it reasonably well. We successfully smuggled 1200ml of Erbitux (roughly $12,000 US) into the states which was a bit exciting and I have now gotten chemotherapy in another country (which makes me wonder if there is some pointless and nonsensical record out there for some guy who has received chemo in the most number of different countries, somebody call the Guinness people, we may have something that would interest them. Perhaps we could expand the segment into weird activities engaged in while getting chemo like Monopoly or most hot dogs eaten while getting chemo, or greatest number of soccer juggles while on the drip). I have switched regimens a number of times over the last year, but I am unsure of exactly how many times because chemo drugs are added and removed sort of at will and usually the new regimen will have a few of the old chemos. I trust in Dr. Isacoff and seem to be doing pretty well so far.

Sadly, over the year, a great number more people were diagnosed with cancer including family and close family friends. I am sorry to be extending this, but welcome to the club. I know it seems unfair, but only those who have faced this disease can really know all the thoughts and emotions that go through someone’s head after diagnosis. Our wonderful care-providers can know 99% of those thoughts and emotions, but there is really no substitute for living it. If you are reading this, consider yourself lucky. You are a survivor. It may have been only a short time, but you are an inspiration to others. Maybe you should consider starting a blog. It is a wonderful way to release some inner demons if you are so inclined. Just know that all of you are in my thoughts and prayers and that I am also thinking and praying for your care-givers. They certainly deserve more credit than they ever get. At least we have something to fight against, they have to just sit there and listen to us whine, and bring us water when we are thirsty, and a blanket when we are cold, and cook more pasta when we threw up the first batch and are still hungry and need calories to prevent weight loss.

Well that is about as much reflection as I am good for right now. Again, thank you to all of you who have made it an unforgettable year. I wish each and every one of you a fantastic 2008. Remember, years are measured more in tears than anything else, whether they were tears of joy or tears of sorrow, they were moments lived.

Carpe Vitam,
TN

Below are just a few highlights from December.

Back in the doctor’s office the day after Portland. No rest for the weary. Check out the port. Pretty sweet. This was the first time I had ever received Avastin and it was a little rough. The next few days I had tough mornings. It was as if the 5 or 6 minutes of hot water in the shower were too much and I would have to sit down before I would fall over. Usually after an hour or two or three, I would feel pretty normal and was actually able to work most of those days. Eva said I looked green a couple times. I don’t really make it easy for her during those times. I neither want pity or seclusion. I just want her to act as if nothing is happening. That is understandably tough when I look like I am about to fall out of my chair at the breakfast table. I love you, honey.

On the 15th I went down to Long Beach for the Conrad’s Christmas Breakfast. I got there a bit late (I love sleeping in with Eva), but still caught the tail end. What a surprise, my parents were there. Marty and I had competed for a number of years, but I think I am going to have to hand the title over to him. I now have set my sights on a skinny little Swiss girl who thinks she is just as quick as can be. It was really good to see Marty and his family and a number of others from the LB days.

On Monday, the 16th, I only got Mitomycin C and was in pretty good shape so my parents and I decided to go for a little walk/hike in the dog park part of Griffith park. I huffed going up the hills but managed to get my sorry butt up there. Again, it is just so hard to know that the hill that is currently kicking your butt, you could have owned at one time. It is like the decline that an older person experiences slowly over 25 years have been compressed down into about a year. I know I just have to take it easy and relax and that I am very lucky to still be able to get out and about, but there is still a little bitterness that comes out from time to time. Anyways, it was a really pretty day.

I spent the week working and shopping. I felt very American. Raytheon is wonderful because once I did my hours for the week, I would not have to go back until January 2nd. On Friday the 21st, Eva and I went for a walk that started at the same place my parents and I had hiked earlier in the week. The traffic was a bit tough getting there (even though it is pretty close) so we ended up hiking under a full moon with all the city lights below. It was just pleasant. Check out that sky.

There is downtown in the background. LA can be really pretty when it wants to be.

On Saturday the 22nd, my folks, Eva, and I went to Royce hall to watch the Nutcracker. It was wonderful though we had forgotten how much of the audience was likely under the age of 12. Never-the-less, there were some adorable little stinkers and the performance was really well done (though we do believe that there were more dolls in the performance in Prague). As we were heading back to the car, we heard this boy exclaim, “Man, those tights are so itchy.” Sure enough, it was the boy who played Fritz and it appears that his character was not all that much of a stretch for him.

Monday, December 24th
We went in for chemo and sympathized with all of the poor staff who had to work on Christmas Eve. Eva actually started my IV through my port this time and did a great job. Later in the day we cruised down to San Pedro and I was feeling well enough for a walk down to the tide pools. Somehow I managed to get this cute little critter and include the Hirshberg slogan (or at least the half I like).

Here we all are on the rocks. Just another beautiful day.

We had a wonderful dinner and to incorporate some of Eva’s traditions we actually opened up a few gifts on Christmas Eve. It was really fun. We attended a midnight service at Lakewood Community Church, which was really nice, though it was tough not have Grandma there. I still think of her often and still long for the times we spent together. I know she is still with me, but my world had just been a little sadder without her. Here we are all dolled up for church.

We took another walk on Christmas day. This time out to Jap’s cove. It was a great day.

Great sunset on Christmas.

My post-Christmas time was spent mostly playing with the various gifts I had received - a small helcopter (Go Eva!) and hovercraft (Go Mom and Dad!) though I also did quite a bit of reading and puzzling. On the 28th, I did get out of the house and went down to Long Beach for a round of Golf with Tiana, her Dad, and Steve. Steve look fierce early and had some really pretty shots but the back nine took its toll as his endurance faded. David plays with the consistency of someone who actually knows what they are doing and Tiana, well, she is just such a nice person. We had a nice late lunch after golf and then Tiana and I caught up with Ryan Barger (my best friend from middle school) at a little coffee shop. It was really nice seeing him and it sounds like he is doing well for himself.

On the 31st, Eva and I went to Tiana’s as we have done for the last few years. It was fun though I have to applaud Eva for enduring the same high school stories year after year. She thought she knew everyone, though this year presented a whole new bunch of faces. I think Eva and I have lived a bit beyond our years, which sometimes makes it a bit hard to be around people our own age. We had a great time and really enjoyed seeing everyone, but we just sort of have a little different mindset. We look at each other and are just thankful to be together to share another New Year’s, as opposed to others who are struggling with deciding whether or not to pursue another degree or live in another city or whatever. I am not saying that those are not valid concerns; it is just a little different when you are facing something like cancer. We still had a really nice time at Tiana’s and really appreciate her having us. And props to her parents for their incredible help and work. I am making a push for them to join us at the table next year. For the work they do they should enjoy the dinner as well. They’re hip, they’re with it. If they are not at the table next year, maybe I will join them in the kitchen.

Well thats about it for now. I wish all of you a great year. Some final words… Live as if you will die tomorrow, dream as if you will live forever - James Dean.

Take Care and Live Strong,
TN

12-08-2007 Portland

2007-12-13T16:10:00.000-08:00

The big winner for the 10,000th hit was …drum roll please…

Jessica Noesen!

Congratulations Jessica! She emailed me with the screen shot and is entitled to all the glory this contest can bestow on her. Well, it looks like it is going to be a t-shirt and then hopefully, some activity involving a boat. Sorry not to reveal the results immediately, but it really would not have been consistent with the philosophy of this particular blog (basically, I continue to be lazy).

Anyways, I hope everyone had a wonderful Christmas and got everything they wanted. If there was something that you did not get, you are always welcome to use the rationalization that “Well, if Tyler wanted it, he would probably buy it for himself. So, I might as well buy it for myself. You have to live for the day.” Yeah, I have sort of been doing the instant gratification thing for the last year and 5 months. Miraculously, Eva and I are not bankrupt yet. It did make it a little hard for Eva to do her Christmas shopping but she did manage to put the breaks on my spending (on myself) a bit in the month and a half leading up to Christmas. Actually she did incredibly, as did the rest of the family. I feel incredibly fortunate. The toys are fun, but at the end of the day, nothing really beats a good hug and just knowing that you are loved (try telling that to an 8-year-old, give him about 15 years and he will get it).

Back in early December, once Eva and I got back from Switzerland, we worked a few days, and then were off again up to Portland to visit some of my family. We left Saturday morning and were at the home (sorry Zel, you lovely residence will be referred to as a home during this entire entry) by early afternoon. The 2 hour flight was nothing when compared to the 11 hour flight to Zurich. We checked out the activities list for the day (the home is amazing and coordinates activities for the residents pretty much every day) and saw that Wii bowling was happening in the afternoon. Pretty Sweet. We got Zel out there and she actually got a few strikes. Look at that Champ!

My father got into it a bit though, luckily, he was a little more restrainded than when he was Wii boxing in our apartment. Just because I relish in every victory, I have to mention that I managed to hit a couple strikes in the 10th frame for a come from behind victory.

After our bowling workout, we took a little tour around the home. Nearly everyone decorates their doors for the season and some were really spectacular.

Eva and I loved the goose with ear warmers. Adorable!

We took a bit of a break before dinner and Eva and I checked out the library. I perused a really nice Atlas and Eva amused herself by working on a puzzle that was out. I had no idea that she liked puzzles but she was adorable and got really into it. We only spent about 45 minutes there but a puzzle that was only about ¼ done upon arrival was nearly ¾ done before we had to go to dinner. It was tough to pull her away.

Then Eva, my folks, Zel, and I went to AppleBee’s in the little shopping center right around the corner from her place. We had a dinner of appetizers which is always fun. We just cannot resist the happy hour specials. After dinner we chatted a bit more at Zel’s place and then turned in.

On Sunday, we got up and had breakfast with Zel and her friends Ray and Bob. They are a couple of characters and it was wonderful to meet them and have breakfast with them. It was really good to see that Zel has some really nice friends at her place. Good friendships are had to come by and really make life a whole lot better. Eva commented and I agreed that all three of the residents were just so quick that it was hard to keep up. Some of the comments out of Bob even made my father blush a bit. It was just really funny when you were not expecting it. After breakfast, we talked a bit more on some of the nice couches that were in the main room and my dad and I got to hear about a car that Bob had been restoring. A nice 30’s Mercedes convertible. "You know, like Hitler’s car." he said. Just a funny guy and Ray was just so kind and warm as well. She was pretty liberal and I had to laugh when she said we have a nutcase in the White House. Not the usual sentiment out of the older crowd (no offense intended Ray and Zel and Bob, you all are very young in spirit). I would try to test the political waters with Zel but realized that I would probably not get very far as she generally votes by looks. Lets face it, even with the ears, Bush was better looking than both Gore or Kerry so you can’t really hold that against her. After digesting a bit, my folks, Eva, and I went out for a little run/walk. Eva ran and the rest of us walked. There was a little bike path that ran along the stream and apparently went all the way into Portland. It was really nice though crisp and cold and even a few snowflakes fell. It felt good to get out and move around a bit.

Then we went back, got cleaned up, and met up with the rest of the family at Zel’s. Tom and Birken had come over and Betty and David had come up. It was really great to see all of them. All of them were looking very well and everyone seems to be doing pretty well. After catching up for a bit we all made our way down to a lovely Sunday champagne brunch put on by the residence. It always just feels very good to get the family together a bit and this was no exception. I wish I had more time to travel around so that I could see my family a bit more regularly. I guess we all wish we had more time for everything that we would like to do. If I have realized anything from this experience it is that time is probably the most valuable commodity any of us has. So make the most of it. And just for the record, sometimes time is best spent just doing nothing with someone you love. I cannot express how much I enjoy just hanging out on the couch with Eva. That said, I also enjoy dragging her around a bit a trying to squeeze it all in. I guess that a balance of both is nice. Anyways, lunch was wonderful, good food and good company. The boys behaved themselves, not that there was ever any doubt, but sometimes my father’s sarcasm can get a little out of hand. Sadly, we were only on a short trip and Tom had to pick up a friend from the airport and that was the only time we got to spend with Tom and Birken. Hopefully, Tom will have a wonderful time in Hawaii (he is probably there right now) and hopefully Birken gets some snow. We sort of took it easy that afternoon and then in the evening, Eva, my folks, and I went to the little shopping center right by the home. We tried to do a little shopping for each other though it was a little hard to shop for each other in front of each other. There were a couple close calls where a “Stop right there!” and a cover the item with your jacket maneuver prevented a surprise from being spoiled. We grabbed a small bite at the bar around the corner and then went back to Zel’s.

On Monday, we got up and checked out the exercise room. What a surprise, my father was already in there and sweating hard. After a brief workout, we got cleaned up and went down for breakfast. I really love the set-up where everyone eats with each other for as many meals as they would like. It is really social and just totally reminds me of college. After breakfast, we all cruised down to Betty and David’s to check out their new house. On our last trip in May, we got to see the blueprints and now we got to see the finished product. It was very nice. A beautiful home and Eva even said that the corners appeared to be aligned (something of a rarity in American construction – a little joke between us. I usually respond by saying something like, “well at least is did not take 5 years to finish). It was a little ways down there but the drive was nice and we got to see a bit of the Oregon countryside on the way there. We had a great lunch and spent some more time with family. Zel looks like she is enjoyng her spot.

Betty, me, and Eva. Betty, my dad's cousin, was recently diagnosed with breast cancer and is just begining her chemotherapy regimen. She has maintained a wonderful attitude throughout probably the hardest part of the journey (diagnosis) and it was actually really fun making cancer jokes with her, survivor to survivor. We all just try to make the best of a shitty situation. I really feel for her, and everyone who has been touched by this disease, and wish her the best of luck in her journey. Please keep her in your thoughts as the wonderful thoughts and prayers you all have given me have done wonders in keeping me around.

Check out the great tree at the home. I am telling you, this place was really nice. Sign me up.

Here we are with Zel before we left. She just has a wonderful spirit. I hope to make my way back up there soon.

Our trip was a quick one and we had to head back up to Portland to catch our flight that evening. We dropped Zel off at the home, hugged our good byes, and were on our way. Another mellow flight back down to LA and then we went back to San Pedro to crash.

Take Care and Live Strong,
Tyler

11-24-2007 Trip to Switzerland

2007-12-01T17:59:00.000-08:00

Ok just a couple of current items and then a recap of the trip to Switzerland. My health is fairly steady. We are not out of the woods by any stretch of the imagination but it seems that we have come across a nice little meadow on our way. Hey, I would not mind hanging out in this state for a very long time. I have been going to chemo about once a week (before and after my trip to Switzerland) and it is still pretty OK. I had a few rough days but those are to be expected. Anyways, my father has put our little 17' whaler (boat) into the water in Los Alamitos Bay for the next couple weeks and would love to take anyone who is interested out to see the lights in Naples from the cannals. Just give him a call. If he gives you any grief (he won't) tell him Tyler told you to call.

The other little item is that with all of your incredible support, the blog is approaching the 10,000 hit mark. This kind of notoriety has caused some to try to advertise through comments (Please do not click the link from any posts from that Adam character! It will only make it worse. If a comment is from Adam Shaffer it is probably OK) but it is also very exciting. Thank you all for your support. To show my appreciation of you guys sticking with the blog, I will have a prize for the person who is the 10,000 hit. This contest will be based on the honor system so if you see that you are 10 hits away, please do not just close and open the blog 10 times. Play fair. If you find that you are the 10,000th visitor, please take a screen shot (google it for your operating system if you do not know how) and email it to me at tnoesen@gmail.com. The prize has yet to be determined and may depend on the winner (ie waterskiing is probably not a prize that my Great Aunt Zel would get very excited about). Good Luck and thanks for being a big part of the support network that has helped me along so much.

The day after Thanksgiving, Eva and I hopped on a plane and cruised over to Switzerland to see her folks. Switzerland is always wonderful. I feel incredibly fortunate to just be able to pick up and head over to such a beautiful country and to have such a nice place to stay. The primary reason for the trip was to spend time with Eva’s folks and we got to spend some good time together. Most of the trip was spent in their little village of Rudolfstetten though we did get into Zurich a few times. I just love the forest and fields up the hill from their house. I am such a city boy so I get excited whenever I am in the countryside. It was really neat contrasting how the fields looked on this trip with how they looked in July - pretty big difference. The weather was fairly cooperative, much to Eva and my chagrin. We were hoping for rain and snow (you know, just to mix it up a bit from sunny SoCal) but it was pretty nice most of the time. There were a few foggy days, a couple days of rain, and it did snow on a run once, but mostly it was just chilly and clear.

We got to have dinner with Eva’s friend Andy and also go out with Justina (Eva’s best friend from childhood). Both evenings were really enjoyable and they both seem to be doing very well. Andy had a great apartment that was right on Lake Zurich. It definitely got those wheels turning in my head as there were a number of boats along the street going to their place. We shared a little 8-year-old fun after dinner as he brought out a couple RC helicopters and we flew them around the apartment. So much fun! The cats seemed a little freaked out but I am sure they will get over it. Amazingly, we did not destroy anything in the apartment. Andy and I are very lucky that our respective wives put up with us and even got into the fun as well (some women may be offended by that remark, but lets face it, how many little girls do you know that really like helicopters or have ever come up with the idea of strapping a firecracker to an army man to see if he can fly). Eva’s faces while flying the helicopter were priceless.

The next evening, we went out to a bar with Justina in Widen. It was a pretty hot spot (well, it was the only spot in Widen – a pretty small town). The crowd was interesting as the age range was wide open. There were kids that looked like they were still in high school and then there were people my parent’s age “getting jiggy with it”. It was very loud and smoky but Eva and I really felt that we were living it up like a couple of twenty-somethings should be. Usually we are in bed fairly early but when you travel through 8 time zones, you can reschedule your body so that you can stay up later. One drawback of this approach is that you may end up sleeping in fairly late but I am pretty sure that Eva’s folks already think I am a snoozer anyways so oh-well. Anyways, Eva and I really enjoyed sort of being a part of the scene at least for one night. Justina is always a pleasure to be around and just fun and bubbly. After the bar we went back to her place and conversed in a little more low-key environment. She showed me a music video of her friend, which was really cool though it was a little odd seeing a very pretty blonde girl doing some hardcore German rap. The chorus was pretty catchy, though it really should not be repeated in front of minors. Eva and I did not get home until about 3:30am. We felt like such Euros! (even though 3:30 would be about halfway through a Euro’s evening).

On Saturday night, we kept the nightlife and high living alive by attending a ball very close to Lake Zurich. It was a Czech Doctor’s ball and a pretty fun event. Maybe I do not know where to look, but you do not see these balls as much, if at all, in the states. It was an impressive local and everyone was dressed to the nines. They had a live band and lots of dancing. Eva and I got out there a bit but my leading could use some work. She looked incredible and I was really just stoked that she was at my side. The other two couples at our table were very nice and kind enough to speak English for me. Switzerland really amazes me with the ability for a great majority of their citizens to be able to switch between German and English and possibly Czech or French at a moments notice, often within the same conversation and occasionally within the same sentence. The man to my left, Chris, was actually deputy mayor of Rudolfstetten (Eva’s little town). It was really interesting talking to him about how Swiss politics works and how the town is governed on a day-to-day basis. Swiss governance is much more of a bottom up approach. It is really fascinating though it is hard to imagine the consequences of a similar system being applied here. What would happen if every little American town could vote directly to determine the amount of taxes they pay or vote to approve or disapprove the proposed color a neighbor would want to paint their house? At any rate, the ball was very enjoyable. I feel like I have gotten that much more value out of my tux every time I get to wear it. I am such my father’s son.

The rest of the time was spent just doing day-to-day things. We had gotten ready to import some more Erbitux, but it looks like my regimen is changing again and now I will be on Avastin. Unfortunately, the price for Avastin in Switzerland is roughly the same as it is here in America so we decided to forgo the smuggling effort. We did stock up on Iscador though (a mistletoe extract that has been used in Europe for quite a while to boost the immune system and hold back cancer spread). It was a pretty quick trip but very enjoyable. We will see but I would expect that Eva and I will make our way back there in either February or March. Below are a number of pictures from the trip with little captions. I hope everyone has a Merry Christmas, has had a Happy Hanukah, or has a wonderful celebration in whatever way you chose.

Take Care and Live Strong,
Tyler

I hope you enjoy the pictures…

Here are George and Miluse having a good time at a little village get together. Within 24 hours of our arrival, I had eaten 4 sausages. I sort of toned it down and got back on salad in the days that followed. George and the Men’s Choir sung at the little gathering, which was a really lovely way to start off our trip.

Their neighbor was having a rough time mowing the lawn so he employed a few Alpacas. He was hoping for a two-fold benefit with them keeping the grass short and then fertilizing the entire yard. Well, it turns out that they don’t really cover the intended area as uniformly as you might hope. They seem to eat from a couple spots and poop in one corner. Not all good ideas work out as planned. Oh-well.

Here are George and I out on the bikes. It was a little chilly but just wonderful to ride around the fields.

No trip to Switzerland would be complete without seeing some cows.

Eva and Miluse making cookies. What an adorable mother daughter bonding time, with sweet benefits to the others in the house as well.

Some days were clear, some days were foggy. I did not get a picture of it, but there was a bit of frost on a lot of the plants that looked really cool.

Here is Eva and I on the morning of our trip to Zurich. Banhofstrasse is basically like a combination of Rodeo Dr. and Time Square except that everyone is speaking German and looks to be working very hard.

As usual, I see a church and have to go in it. And guess what, this one had a tower, too. This was Grossmunster, a church that my parents and I had been to last July. Ahh, my wife tolerates my tower addiction with such patience. She is so wonderful.

She told me to look fierce and this is what she got. That is lake Zurich in the background.

Well, after we had gotten our fill of churches, we moved onto chocolate shops. You can almost feel the excitement.

I am enjoying a very fine hot chocolate in a cute little chocolateria. The place was adorable and it sort of felt like this is what a cave could look like if they let Martha Stewart go to town on the decorations. It was a warm retreat from the cold and who would refuse chocolate? Luckily, I am only 5’9”. Anyone over 6’ would have a tough time moving around in there.

Just for kicks, we rode the Polybahn, a cute little tram that takes people up the hill to the university. The sky was amazing and we barely got this shot before the colors faded away.

Back down at the train station, there was a little Christmas market. Lots of little kitschy items if you were so inclined. Here is a tree decorated with Swarovski Glass ornaments. Pretty sparkly.

Here is Eva looking gorgeous in front of the main train station. I feel lucky everyday.

Another run in the fields by Rudolfstetten. Eva really liked this tree and thought it looked a bit like a leaf.

Taking a break at the water stop. It was a little drizzly and I dressed for it.

Egelsee in the rain. Again, the California kid is just amazed at this concept that people call the seasons. Later on the run, when we were going through the forest, I thought of my Great Aunt Zel. I think that what we where in would be what she would describe as a clean forest (like those in Chicago). None of those overgrown bushes like you would find in those messy forests of Oregon. Personally, I find both forests appealing so if you are taken aback at the idea of a messy forest in Oregon, I want you to remember that you would be at odds with an adorable 93 year-old woman.

Here are a few photos from the ball. Again, I feel lucky every day.

Sometimes the music would get a little fast and it was a good idea to lead me off the dance floor.

Eva and her father. Just for the record, George and Miluse were pretty awesome on the dance floor. They were putting their kids to shame with the moves and the style they were working with. Well, looks like a little practice is in order for Eva and I. I always enjoy a good challenge.

Eva’s folks and us at the table. The guy on the right is Chris, who I mentioned before. To say that that guy was also impressive on the dance floor would be quite an understatement.

This afternoon we all went for a walk up in the hills. The clouds were pretty spectacular and then all of a sudden it started raining. Who knew?

A hillside in Switzerland. There is just something really appealing to me about a lone tree in a field. So peaceful.

Thanksgiving

2007-11-24T14:09:00.000-08:00

Well, I finally got around to adding some images to the Thanksgiving post. Hopefully, the Switzerland recap will be up soon. I hope everyone is well and filled with holiday cheer. I am off to chemo Monday morning - I am still just plugging away. A more thorough update should come soon. Good luck to everyone on finishing up their holiday shopping. Keep that economy going!
Take Care and Live Strong,
Tyler

Check out Jessica's new ride. Pretty sweet. I would have rather seen her in a Prius, but you know, I can understand that high schoolers might not think that is the coolest way of getting from A to B.

My dad holding the newest addition to the family. He broke the rule of never taking a happy baby but somehow, managed to keep the kid happy for quite a while. I guess he has had a bit of experience around the little ones.

Who doesn't like a ride on a shark?

A table scene.

Me and the next cutest, I mean youngest, member of the family. I could use some photo posing tips from her. The arm thing is kind-of artsy.

I hope everyone had a wonderful Thanksgiving. If you are reading this, you certainly have at least something to be thankful for. I had thought that I did a pretty good job of appreciating what I had before I started this journey, but there is nothing like a cancer diagnosis to make you appreciate every breath, every day, every hug, every moment spent with loved ones. It is a good perspective to have. Views are prettier, games funner, and food tastes better (unless you just had chemo). I really enjoyed my Thanksgiving as I got to spend it with almost all of my family that lives the LA area. It was really great that people from both my mother’s and father’s side got to come together at my folk’s house for a traditional turkey dinner. It had been a while since I had seen a number of them, but it is always great to get together and we always seem to pick up right where we left off. The Uno champion of the night was Aunt Charlotte. She made it look too easy. The newest addition to the family, little cousin Ian, was adorable and animated. Somehow that spoon just ended up on the floor time and time again. When you are that cute, you can do pretty much whatever you want. I wanted to extend my heartfelt gratitude to all of my family members who made it over and for making it a really enjoyable day. I hope everyone is lucky and has as wonderful of a family as I do.

I am sure you have all heard it before, but just to keep pushing it, November is Pancreatic Cancer Awareness month. These are the last few days to try to raise awareness in November (not that any effort should be halted just because the month ends). Try to wear as much purple as possible and spread the word. The more awareness that is created, the more money can be raised, research done, and hopefully treatments can be found that are effective against this disease. Recently, the House and Senate tried to override Bush’s veto of the Labor-HHS(Human Health Services)- Education bill, which provides the bulk of the funding for the National Cancer Institute. The current bill has a modest and very needed increase in funding for research in all cancers. Just to give you an idea of what the bill is about and the scope of it, the bill provides for a number of good domestic causes – Education, job training, and health programs that would benefit a number of different diseases in addition to increasing funding for cancer research. The entire bill is estimated to be about 600 billion dollars. The current version of the bill is priced at 606 billion, which was too expensive for Bush. He would like to see the bill come in at 596 billion. So basically congress and the president were quibbling over 10 billion dollars that would greatly help a huge number of Americans. In the same week that the bill was initially voted on, Bush asked for funding for the war next year. His request was for nearly 200 billion dollars with no strings attached. It is just hard for me sometimes to understand how a president that has taken the national debt from 5 trillion dollars to 9 trillion dollars during his 7 years can start to get thrifty on matters that would really help a large number of people in very real ways. I agree that national security is of the utmost importance, but the way that we have pursued that end just seems a bit off track. September 11th was an atrocity and a tragedy, no question, but so is losing 30,000 Americans to pancreatic cancer every year. It is really a question of where to devote resources. It is scary and horrible to think about dying in a terrorist attack, but really, the odds are pretty miniscule. On the other hand, there is a 1 in 3 chance that you will be diagnosed with cancer in your lifetime. Now lets look at the current allocation of resources, the 2006 Nation Cancer Institute budget was 4.8 billion dollars (that is for all forms of cancer and all approaches to stopping it – prevention, diagnosis, and treatment). The next year of fighting wars in Iraq and Afghanistan is projected at 190 billion dollars. We are spending nearly 40 times more money to “fight terrorism” than cure a disease that killed an estimated 565,000 Americans in 2006 alone. Anyways, the veto stood by a close 2 votes in the house. www.pancan.org lists the ways representatives voted and if you have a minute, it would really help if you emailed your congressman or woman and let them know how important this legislation is to you. If they voted in favor of the override, thank them, if not maybe ask them why. That money will help us all in very real ways. OK, enough political ranting. Thanks for bearing with me.

I continue to plug away on chemo and do pretty well. I still feel really fortunate that my body seems to handle the chemo in an OK manner. I have moved to a once a week regimen but I seem to only get Taxotere or Mitomycin C when I go in. I barely feel like it is worth it when I only get one chemo. I think I also get the same amount of Decadron (steroids) as when I get 3 or 4 chemos. This usually sort of hypes me up during the day and I end up feeling fairly normal just a few hours after the infusion. The problem usually comes that evening when I go to bed. After my last infusion, I went to bed around 11 and was wide-awake until about 4:45am. I am usually a great sleeper, but that stuff just fires me up. My mind just races. After lying there for a few hours, I surfed the internet for an hour, then went back to bed and eventually fell asleep. If I could direct my energy a little more, I could probably be incredibly productive. Oh-well.

Another little issue came up when I went to the eye doctor a couple weeks ago. Eva had noticed some redness and I have generally been having a little trouble with seeing things that are backlit over the last year. We were wondering if it was chemo related and just thought it would be a good idea to get checked. The doctor was very nice, and what do you know, her mother-in-law had had a whipple just a few months ago – small world. She was a bit taken aback that I was so young and thought that I was in great shape for being on chemo for a year and 3 months. Anyways, the redness was just because I am fairly active and spend a fair amount of time outside, no big deal. Wear the contacts a little less, use some drops if needed. I decided to have my eyes dilated, just because it had been a while since the last time. Turns out I have a small cataract in each eye - right in the center of my field of vision. She asked if I had been on prednisone, hmmm. She agreed that taking the prednisone for the lung fibrosis was the proper course of action and, though it probably caused these cataracts, it was definitely the more urgent problem that needed to be addressed. Right now I can still see very well, but if it ever gets really bad, cataract removal surgery is pretty routine these days and they could actually correct my vision at the same time. And because I would be having it because I needed it to see, it would be covered by insurance. I guess there is always a silver lining. Just in case any one gets any ideas, I have to say, I would not recommend taking prednisone to try to get cataracts, so that you could get cataract removal surgery and basically free laser eye surgery. There are probably much easier and less elaborate ways to defraud you health insurance.

Some of the highlights over the last couple of weeks…
I have had a few fun evening activities over the last few weeks. I went to see “The History Boys” with Eva and my folks at the Ahmanson Theater on Friday the 9th. They were great seats in the second row and the play was very enjoyable. I would not recommend it, though, if you get squeamish at the idea of high school teachers groping male students. It is set in England which I think makes it OK, kidding, just yanking your chains you ol’ Brits. The next evening, the 10th, Aaron Durham and Kevin Word came up to the apartment and we all watched the Cal-USC football game. What a shame. Cal just could not even it up but it was still very exciting and really good to see some old friends. The following Friday, the 16th, Steve and Richard Larson came up for dinner and to catch up a bit. It is always good to see those guys, hang out, and drink some brews (or at least enjoy others drinking some brews). I had half a beer so I figure that I contributed to the effort.

On Sunday morning the 11th, Eva and I got up and jumped into the Ovarian Cancer 5K that started at Cedars. It was good fun and there really is no excuse for not doing a 5K when you can walk to the start. I have to say, I like their logo a bit more than PANCAN’s and their color is a bit more appealing for everyday wear. Kind of a turquoise blue-green. Still bold, but nice. It was a pretty small race but there were still probably over 1000 runners. We got Eva into the right mindset and she did very well. Posting a 24 minute 5K. We run a bit together, but lets just say our “training” runs are very relaxed. I actually tried to see what I could do without killing myself and I managed to post a 33 minute 5K. Shaved 12 minutes off of my time from two weeks prior. I tried to be more focused when I was walking and actually walk fast when I had to. I was also running scared as a marine brigade was on my heals most of the race. Their chants did seem to help my rhythm a bit plus the idea of being run down by 80 big dudes helped me dig deep. As always I also had little nemeses around me. The pudgy couple that I could just not get in front of (though I did beat them in the end) and another little kid (who left me well in the dust, well he was probably like 10, so I think it is OK). Eva and I were very pleased with our performances. Next year, at the LA cancer challenge, we will try to get the team together a bit more. We will still need the XC guys to do their thing, but it might be nice for the heart of the team (the lagers) to all walk together. Eva and I went to town on all the freebees after the race and then returned to the apartment for some post race gorging and napping.

The rest of the time has mostly been spent just doing day-to-day things. I am continuing to work about 75%. Combine that with chemo once a week and sometimes it is good to just take it easy on the weekends. Sorry about the lack of photos on this post. I just have not been carrying around my camera as much as I should be. I will try to get a few from Thanksgiving up on the next post.

Take Care and Live Strong,
Tyler

Weekend of 11-03-2007

2007-11-07T15:24:00.000-08:00

Just so everyone knows, November is Pancreatic Cancer Awareness month. If you are so inclined, please wear as much purple as possible and let people know about pancreatic cancer. I know that it is not the most uplifting topic but creating awareness of the disease really helps the cause. If you are really motivated, you can go to www.pancan.org and email your representative or senator. Awareness leads to money that can go into research which, hopefully, will prevent you or your
family from having to through what we are going through. Try to think of creative ways of promoting the cause. Some may have unforeseen benefits. On November 1st, I wore my purple tie to work and got quite a response. People thought was going for an interview at another company. I laid their concerns to rest, told them that Raytheon has treated me incredibly well, that I was very happy, and that my tie was just to raise awareness about pancreatic cancer. People joked that I might as well let my management think I was interviewing and then see if they would give me a bit to keep me around.

Overall, things are going well with me. I still feel well. Chemo continues and is still pretty mellow, life is generally good, Eva is amazing, and work remains fairly enjoyable. Basically, I am still just plugging away. My regimen seems to have changed a bit again as I was expecting Taxotere, Epirubicin, and Erbitux, last Monday, but got only Taxotere. For the last little while I have been going in once every three weeks, but I was in last Monday (10/29), I was back in Tuesday (11/06), and I am scheduled for next Monday (11/12). I had a CT scan last Monday but will not know the results for a few days, maybe a week. The scans continue to be mellow but the stress level for the few days before and after a scan go up quite a bit as they are essentially progress reports on your body.

With all the trips we have taken and the time that has gone to work, somehow it had been about 4 months since Eva and I had been over to Catalina. To remedy the situation, Eva and I cruised over to the island last weekend. In November, the Camping cabins open up making for some very reasonable accommodations at Two Harbors. The excitement of the summer has wound down quite a bit and the town returns to the sleepy character that Eva and I love so much.

We left Saturday morning and had a pretty mellow crossing- just a touch of wind chop on the water. We kept trying to get into the fog, thinking that it would be even flatter there, but the sun kept breaking through as we would approach and we never got into it. Two Harbors looked a bit eerie as an intimidating fog bank on the back of the island was funneling through the isthmus. We cruised towards the west end of the island and found a good spot for a bit of fishing. Eva is quite a little fisherwoman and she had the lucky hands as she brought fish out of the water first both on Saturday and Sunday. It took me a while but I managed to keep up with her and we ended up with 4 fish each on our first little outing (in case you did not already know, everything is a competition between us).

We may have ended up with the same number of fish, but Eva certainly beat me pound for pound. I do not know how this little guy got his mouth around my bait. I do like sushi and think I could have finished him off in about one bite. In case anyone worries, the little guy got thrown back.

We eventually made our way onto land, got set-up in the little cabins, and sat and read a bit. With everything that is going on, we both appreciate having a bit of time to just relax for a little while. The locals at the store mentioned that the haunted house was having an encore on Saturday night and that seemed like the thing to do (if you have ever been to two harbors, you know that was basically the only thing to do). I am not that big a fan of being scared, especially these days, but we gathered up our courage and made our way up past the Banning House to the game hut where they put it on. Appropriately, the haunted house was staged in the hut where they used to skin animals after hunts on the island. I have to say, I am continually impressed with small town folk. It just seems like they have a bit more energy or time and end up producing impressive results. It was a very elaborate haunted house - a maze that you walk through, pretty good size, good props, and some cool little effects. I was definitely freaked out. One spot would blow a puff of air into your face which really startled me. I think the guy had some fun as he puffed me another four times before I could get through that little corridor. 3-D effects and even some crawling made it pretty fun. A few of the “scarers” were pretty good but one or two could use a little work. It just doesn’t have the same effect if the gobblin is laughing as she comes at you. I did not mind keeping it a little light. After the haunted house, we cruised down to the other scene, the Harbor Reef Bar, and watched some football.

On Sunday, we leisurely got up and headed out for a bit more fishing. Again Eva whooped me early, but I managed to even it
up by the end. After fishing, we went for a short run/walk and then down to the restaurant for a nice dinner. Our favorite waiter/ fixture at the restaurant-bar, Deon, served us and took good care of us. It is always great to see him. Eva, amazingly enough, still likes him after everything she went through after Deon and I got drunk one trip. Not that there is ever a good reason to get drunk, but drinking to remember your coach seems as good as any. Anyways, dinner was great and then we walked the 15 steps over to the bar and watched a little more football (isn’t Eva great!).

Another big one for Eva.

On Monday, we had a little breakfast, made our way back fairly early, and were lucky enough to see some dolphins. They always put a smile on my face and just make me feel good to be alive. There were some young ones that were pretty chipper and we would actually get splashed by them jumping off the bow of our boat. One moment I saw three in the air at the same time, all just off our bow.

The crossing was pretty smooth, Eva handles the boat very well and before we knew it we were back in San Pedro. We got the boat cleaned up and then headed up to UCLA for my CT scan. I was not in the best mood as you have to fast for at least a few hours before the scan but I do not think I was at my most unpleasant either. I got the apple smoothies this time, tasty. You know that it is bad when you are so hungry and thirsty that you are looking forward to the Barium Sulfate shakes. I was excited that they would be able to use my port this time though there were a few port related hang-ups. The Purple Power Port (what I have, go Purple!) is fairly new and people are still just working out how they are going to handle patients with ports. Do you start the port early or in the room or only by a nurse or whatever. I told the guy to give me the needle and I would start it myself if they wanted. Side note, the port is actually pretty cool. It is really easy to hook up. Basically, Joan, the chemo nurse, just comes at me with the needle and sticks it in. It is like she is putting a sticker on me, essentially the same motion. I feel a little prick, just like my lovenox injections twice a day, and then the needle is in and you have access to my cardiovascular system. We joke that this would be a great option for junkies- almost too easy. Anyways, the nurse started the port, left the room, and the radiography tech hooked me up to the contrast. The usual procedure is that they scan you, then they remotely push about 150cc of IV contrast into your bloodstream, and scan you again. We got through the first scan, then, when they remotely pushed the contrast, the tube flew off and all the contrast sprayed onto the floor. The nurse had clamped the IV going into my port and the radiologist did not unclamp it when he hooked up the contrast. Just another instance of lack of communication. It was not a big deal. They reloaded, hooked me back up, pushed away, and scanned again. The contrast is pretty trippy because it makes you feel a warm rush and gives you a sensation of soiling yourself right after it goes in. After they moved me out of the doughnut, I checked my pants, and everything was ok. We took the rest of the afternoon pretty easy but then had to deal with some plumbing issues at the apartment.

Tuesday morning, we waited for the plumber to snake the sink and then made our way to chemo. My folks came up for the infusion and we all seemed to have quite a time. I only got Taxotere and it was over before I knew it. Only a couple hours in the office barely seems worth it. I hung out in the lounge with a couple of cool patients. One guy, Mel, was quite an inspiration. He was a 3+ year survivor and has been on chemo the whole time (no surgery). He did not hear all that well, but I would type questions on my computer in large type, he would read, respond, and before we knew it we were just chatting it up. Cool guy, great spirit. After the infusion, the group cruised over to Century City and we watched American Gangster. Nothing like an action movie for the post infusion, drugged up mind. We rounded out a great day a great meal and had sushi delivered – how decadent.

I managed to recover pretty well (it was only one chemo) and went in to work on Wednesday and Thursday. Not all that exciting but still good to feel somewhat productive.

Take Care and Live Strong,
Tyler

Pancreatic Weekend

2007-11-01T22:42:00.000-07:00

What a weekend. It was something of a pancreatic cancer festival this weekend as there was the PANCAN symposium on Friday, the PANCAN Gala on Saturday, and the Hirshburg LA Cancer Challenge 5K/10K on Sunday. A bit of an emotional rollercoaster, but there was a lot of hope throughout the three days. Sunday morning, in one of the most touching displays of support I have ever seen, a number of friends and family came out and ran for Team Tyler in the LA Cancer Challenge 5K/10K. The people who came out today joined others who have been incredibly generous in their support of pancreatic cancer research. Thank you, from the bottom of my heart, for your incredible gifts of love, friendship, and support. You all are truly amazing people and I just cannot express how grateful I am to each and every one of you.

Great job Team Tyler! We all did incredibly well. I am not sure how much my 45 minute 5K contributed to the group but we ended up winning the team competition in the 5K and coming in 4th in the 10K. Awesome! The team raised over $5,000 for pancreatic cancer research. The running was impressive, but raising that much money was truly remarkable and transcends any mere athletic feat. Thank you all so much! Now back to the running, a special thanks goes out to the ringers who rounded out the team nicely. Well done to Amy (Alex’s girlfriend) who won the women’s 5K, to John Burke who got third in the men’s 5K, to Dan (Alex’s friend) who won the 10K and also to Alex for sort of orchestrating the ringer involvement. Props goes out to Spence for taking Tom down, to the heated competition between Mark Carpenter and Michael (his son-in-law), and to all of you who, like me, now are just winners for getting out there and going the distance. I am sure I will miss a lot of people but it was great to see Rosemarie and Margaret, my aunt and uncle Karen and Terry, the wonderful Lui family, the always fun Sanders’, the incredibly kind Fiduks, my old high school running mate Nate and his lovely wife Becky, John’s great girlfriend Caroline, the always inspiring Carlsons, Markus- the Swiss connection, big Dennis and his wife (great shirts!), and my old running buddy Adam. We even got one of the scientists who PANCAN is supporting to come out with his wife. Thanks Paul and keep up the research. I am sorry for anyone I missed. I will blame my forgetfulness on chemo. A big thanks goes out to my parents. None of this would have happened without you two. Great job on beating your age Dad and for coming in third in your age group Mom! Finally, thank you to my lovely wife. Today she walked with me, stood by me, and cared for me, as she has done over the last year and four months. I doubt how well I would have done without her in either race. With that wonderful little smile of hers beaming back at me, and her soft touch nudging me along, I just keep putting one foot in front of the other on the long road laid out before us. One step at a time, one day at a time, and hopefully, eventually, you get a chance to look back and see how far you have come.

Here are just a few photos from the race. Here is the lead pack getting ready to run. I just wonder if John could have won the men's 5K if he had gotten a bit more sleep.

Like any 5K, there is not only the race to win, but little races throughout the field. Here, Eva and I are trying to take down a walking 8 year old. I do not want to become Al Bundy and resort to stories from my glory days, but I used to be a decent athlete. I could have whooped this kid six ways frm Sunday in my prime. Just for the record, I did manage to outkick him.

I think my mother looks very young and aparently, the race officials did too as she was entered as a 29-year-old. Though she was flattered, she knew that she would be taking home some hardware if she was in her proper age division. Look how happy she is with her medal.Go Mom!

It was a little wierd seeing my name on people's shirts but I got used to it. It was also wierd when people would figure out that I was Tyler. Just sort of brings home the idea that cancer can happen to anyone. The guy on the left was Paul, a scientist that is funded by the research dollars we all raised. It was good to get him out of the lab and into the 5K. He sort of added a needed research element to Team Tyler (not that the trackhouse guys are not all that intellectual, but well, you know...)

As I said before, the pancreatic fun really began on Friday with the symposium. A number of doctors, survivors, caregivers, and volunteers got together to discuss what was new in the world of pancreatic cancer. The talks were very good and quite informative but there was a bit of repetition from last year. Like everything else, progress never comes as fast as you would like. That being said, progress is still being made. PANCAN, the pancreatic cancer action network, uses a fair amount of the money they raise to directly support scientists doing pancreatic cancer research so hopefully one of those guys will come up with something good sometime soon. Needless to say, the day was filled with emotional highs and lows. There are incredibly inspiring stories out there as well as incredibly sad and tragic. Lets just say it is a little nerve racking when it is by no means guaranteed that a survivor you met last year will be there this year. When you see people’s relief that you are still around you start to think that you might be in some pretty serious sh#t. That said, it was great to see a number of people that I had met the year before or had seen in Isacoff’s office. The survivors at this sort of event are really amazing and tend to be the positive optimistic people that you would want to surround yourself with. I am not 100%, but I was pretty sure that I was the youngest guy there and was reminded of that a number of times during the day. Just in case you did not know, I am aware that I am very young and have pancreatic cancer. Some people would come up to me and sort of “tactfully” bring it up as if I were not aware of one or the other facts. It reminded me of this one time waiting in Dr. Isacoff’s office when a nice woman leaned over to my wife and whispered “Ohh, he is so young.” It was not so much that she commented on it, but that she whispered, which caused my wife and I to muse over it later. It seemed as if it was a secret that they were keeping from me. “Ok, now Tyler, lets got to the office again this week for no particular reason. Just sit in the chair and take what is coming to you.” “Ok, dear” I might reply. My wife replied to the nice woman “Its not a secret, he knows he has cancer.” I guess I should not be so rash, especially when talking about cancer, but if you can’t joke about it, this whole survival journey thing gets old pretty quick. We have learned, though, to be very patient with people, especially each other, and to make considerable allowances, as we all get a little crazy sometimes. Anyways, enough ranting. The symposium was tough but very positive.

Saturday night was the Gala and it was quite a party (not exactly a trackhouse party, but then again, it was a different crowd). We (the family) got all dolled up and looked quite sharp, if I do not say so myself. My gorgeous wife was beautiful as always, my mother looked fabulous, and my father and I just did what guys do, showed up. The event was at the Beverly Hilton and consisted of a cocktail hour, dinner, a few talks, and then a fundraising effort. The night was hosted by Ryan Seacrest, though there were very few teenyboppers to woo over him. I tried to get my folks to bid on the African safari, but it just was not in the cards. The talks were inspiring and a lot of money was raised. Go rich people! After the fundraiser, they opened up the dance floor and, while a number of attendees headed for the exits, a number of survivors headed for the music. There is something a little liberating when facing your own mortality. I do not think that this disease imparts amazing dancing skills, but maybe being diagnosed just allows you to release your inhibitions and maybe just thinking they have amazing dancing skills is what took some of the survivors moves to the next level. My moves are still a bit restrained as I have not fully come to grips with my own mortality but Eva and I still had a wonderful time. The song “I Will Survive.” may have been written over heartbreak, but was sung and danced to with more passion by the people on that floor, than I can ever imagine some poor, recently dumped sap ever having. It was a bit amusing, as one of the fundraising efforts sort of went awry. They were selling champagne glasses with “diamonds” in them for a pretty penny. The idea was that one of the glasses had a 12K dollar diamond in it, and the other 200 glasses had cubic zirconias. There was a jeweler on hand but it seemed that the CZs were so good, that he could not make a positive identification on the diamond. I guess everyone was a winner, opps. We stayed until the last song, got some dirty looks from the wait staff we kept there, grabbed a center piece, and called it a night.

Again, thanks so much for everything that everyone did to make it an incredibly inspiring weekend. It was wonderful to see so many of you. Remember, November is pancreatic cancer awareness month so spread the word. Ok, I know that it not the most cheerful subject but maybe just bring it up if there are lulls in the conversation. Also, thanks for sticking with me after I continue to neglect the blog. You all are champs.

Take Care and Live Strong!
Tyler

Cancer Run this Sunday 10-28-2007!

2007-10-23T21:54:00.000-07:00

Wow, I just have to say how touched was that more than my mother check the blog so regularly. Uncle Tom, the Nancy and Stephanie, and all of you out there who have stuck with the blog, even through long dry spells are truly incredible people. I would have given up on myself. Thanks so much for the comments, too. They are really motivating. Anyways, I should have given the folks up north a little more than 4 days notice about the run but I am really looking forward to seeing a number of you out there this Sunday. If there is any hesitation about "running" in a 5K, do not worry. My snail's pace will make anyone look good. Seriously, my Grandmother used to get around faster in her walker.

Anyways, I just wanted to give props to those who still check the blog. Also, good job on remembering your password dad. Watch out cyberspace, here comes my father. Here is the post from yesterday...

The blog has been left neglected again for so long. I am telling you this whole work thing is way overrated. It totally cuts into my travel time, my lounging around the house time, and my blogging time. This will just be a quick one to put out a little word about a run this Sunday. No worries if you read this after the run has passed. I commend anyone who actually checks this between now and then as I would have given up on this site long ago. I think it may only be my mother who checks it these days.

Anyways, this Sunday, at the VA next to UCLA, there will be a 5K/10K for pancreatic cancer research. The 5K is at 8am and the 10K is at 8:30am. I will give props to anyone who does both. It would be great to see anyone out there so if you are so inclined, go to www.lacancerchallenge.com and register. My father has started Team Tyler and if you join our team, there may be a little something extra in it for you. A few guys from college will be coming out. One showdown to watch will be to see if John can actually kick down Tom in the last 800m. Another to watch will be Ross Conklin. See if he can end up with some hardware two years in a row. Finally, there is a hearty handshake waiting for anyone who can take down the cancer patient (me). Also, we will keep an eye out for the big guy that was my nemesis last year (check out the post from 10-29-2006).

Also, I want to extend an incredible amount of gratitude for all of you who have already joined the team and donated to the cause. I cannot express enough appreciation for your generosity.

Here is a pic with Ross from last year. I hope to see you out there. TN

7-05-2007 through 7-27-2007 Switzerland, the Return of the Blog

2007-07-29T13:08:00.000-07:00

I know that it has been a long time since I have updated my blog. I will tell all of you the same thing that I tell my mother when she has not heard from me in a while, “If you do not hear anything, everything is probably OK.” That sentiment has been true, as things have been going really well for the last two months. Eva and I had an incredible time in Switzerland, and really enjoyed spending some good quality time with her folks. My health has been pretty stable recently and I cannot tell you how wonderful stability is. I had a scan after I got back to LA and the cyst and mets appeared similar to the scan last April and similar to the scan last January. I continue to tolerate the chemo pretty well and am very thankful for that. We are by no means out of the woods, but I still just plan on plugging away. Since I have been back, I have returned to work on a part-time basis. I have put in 20hrs/week for the last few weeks and have been able to work about half of that time from home. Again, Raytheon has been wonderful in their willingness to work with me. It has felt good to be back at work a bit. I never really had any trouble filling the days, but now I sort of feel more like a productive member of society than a moocher. Eva has been well and I just treasure every minute I get with her. She is a saint and I feel like the luckiest guy in the world every single day.

I have heard from my parents a lot of people asking, “Why hasn’t Tyler updated his blog? Is everything OK?” I cannot express how touching everyone’s concern has been throughout this entire journey. Like a lot of things in life, I just need a bit of gentle prodding to get going again and I thank each one of you for that. I will try to get back into something of a routine and update regularly, but I reserve the right to laziness and to claim that I was too busy, which I hopefully will be. Just a heads up, this is going to be a long one with a lot of pictures at the end, get comfy.

Just to single out a few people specifically… Thank you Mark Carpenter for the incredible Angel’s tickets. And know that it was your gentle prod that put me over the top and got these words onto the page. Thank you. My mom and old family friends, Mike and Laura Sanders, and I had an amazing time. It was a nail biter right down to the last play (last Sunday’s game). It would have been nice if they brought in the tying run on third, or the go ahead run on second, but we could not have asked for a more exciting game. It was really nice talking a bit of sailing with Mike and hearing the latest news on everyone from Laura. Needless to say, it’s always great to spend some time with my mom.

Thank you to Chris Coffee and the guys that got together for our little jaunt to Tahoe. The cabin was amazing as always and the company matched it. Though, there were numerous times when I would think to myself, “Man, it is sure nice to be married. That never happens at home.”

Thank you to George and Miluse for showing us such an incredible time in Switzerland. I know that kids are always welcome in the folk’s house, but you both took such incredible care of us and really made it a wonderful trip. At the outset, I was a bit apprehensive about going for such a long trip, considering my condition, but you two really made really easy for us and all of my special needs were taken care of.

Now that we are thinking a bit about Europe, after one more passage, I will try to recap some of the highlights of the trip with photos and captions. The next few posts will have some of the things Eva and I have done since we got back.

The following passage was written on July 5th, 2007, but for one reason or another, I never got it up on the blog. Most of you know what day that was and its significance for “us”. It was one year earlier, on July 5th, 2006, that I was diagnosed with cancer. It was a rough day. We have since marked the months as small victories and getting to that day has been an incredible feat. I know that the fifth of July will remain in my memory as I hope to watch it come and go 79 more times.

Thursday 7-5-2007
Thursday the fifth of July marks one year since diagnosis. Wow, what a year. There have been more ups and downs, laughter and tears, dreams dashed and remade in the last year than any other year of my life. Some might think of my plight as a tragedy, but they miss the incredible good that has been a direct result of this horrible disease. Think about it, for the last year, food has tasted better than it ever has before. Every beautiful view has been just a bit more inspiring. Every embrace from my wife has been that much more special. Everyday that I have gotten up and had the sun shine down on my face has been a gift for which I am truly grateful. I believe Lance said something to the effect of “We [those diagnosed with cancer] are the lucky ones.” Alluding to the idea that until the notion of living to 100 is taken away, it is very easy to just take for granted what you have. I would like to extend thanks to all of you who have made the last year so special for me. Each and every one of you has touched me in one-way or another and I certainly would not be here today if not for your love and support. I could never name everyone that I am in debt to but I would like to thank a few groups specifically. Obviously, all of the doctors and medical staff that have cared for me and have kept me around. From the first confusing days of diagnosis to my hospital stay to the office that has become a place of tranquility, peace, and inspiration as well as excitement with that lovable dog. I would like to acknowledge my coworkers and the support that they have given me that made the transition to cancer patient as easy as it could be. Not having to worry about work has probably been more beneficial than we will ever know. Assuming everything is still going well, I am planning to return in August and am looking forward to seeing all of those wonderful people very shortly. Friends and friends of the family who have been there for my family and me…it has been amazing how much love and support we have all received and how many people have found time to do some amazing things with me over the last year. Keep coming up with ideas, I like to hear them, and love to do them. My new parents and brother in law (and his girlfriend)…you all have welcomed me into your family, and it has been quite an adventure. As Eva says, “You know my poking is what is keeping you around.” My parents…we have always been close and you both have always supported me in whatever endeavor I have undertaken. This one was sort of thrust upon me but your love has contributed so much to me doing as well as I am doing. Your unwavering support has made so many tough decisions, easy. We have always had fun times together, but so many of the best times have been over the last year. Thank you both for everything. The last two on my list are my Grandma and my wife. I was and am so close to my grandmother. She was such an incredible woman. It has been almost 7 months since she passed away, but I still catch myself wanting to pick up the phone and let her know about everything that has been going on. It is hard, if not impossible to find someone as interested in your life as she was in all of her grandchildren’s lives. I have never felt as much ease and contentment as I did when I was at her place. I miss her so much. I love you Grandma. Finally, my wife…without whom I seriously doubt if I would be here today. I shudder at the notion of going through this without her. She is the light of my life. She brings me happiness each and every day. I do not know how she does it, but she is even cute when she is mad at me, or I at her. She has certainly gotten more than she signed up for and has endured it stoically. I think we both have lived more and dealt with more than your usual twenty-somethings and she still wears that wonderful smile on her face, keeps that kind tone in her voice, and looks younger and more beautiful than the day I met her. I owe her my life, a life together, and I am going to do everything I possibly can to give it to her.

Now onto the trip…

Friday 7/6/2007
Eva took the entrance exam for Swiss medical school today. I did not feel like hanging around the university, so I went to the zoo. Ahhh, such an 8-year-old, I still love the zoo. There was a new huge green house with animals just out and about. Chameleons and Galapagos Tortoises, sweet. This guy was putting on a little show, unfortunately for him, I seemed to be more wooed than the target of his affection (on the left).

Zurich in the afternoon, after a rain has cleared. What a beautiful city and a beautiful day.

Eva and I enjoying what is known as the “Jumbo Jumbo.” This was a wonderful little dinner with Miluse in a very cute part of Zurich. Fabulous meal, even if it did send me into an almost unrecoverable food coma.

On a bridge in Zurich. Everyone over there was really nice to me but I still just cannot help but think in my head that they are all saying to each other “Hey everyone, look at the funny American with his backpack. Lets get him to talk so that we can hear some funny long vowels. Be careful not to piss him off or else he will call in a pre-emptive strike.” I know I am paranoid and self-obsessed. Luckily, I am already married.

Saturday 7/7/2007
George, Miluse, Eva, and I went into Germany to a bit of shopping and have lunch. What a cute couple.

Sunday 7/8/2007
Eva and I went over for a BBQ at her friend Justyna’s house. We got to spend the afternoon with her boyfriend, folks, brother, brother’s wife, and their daughter. They are all wonderful people and the little girl is adorable.

They even let me hold the little girl. Eva and I totally want one.

Wednesday 7/11/2007
Switzerland is just a beautiful place. Here we were running along a river that winds its way through the countryside.

I love wheat fields. I had never really walked through wheat fields before and there is just something about them that appeals to me. I cannot really put it I into words, I just want to run my fingers through them.

Thursday 7/12/2007
My parents arrive in Switzerland. They could not bear to be away.

Eva and I in Eva’s folk’s back yard. Nice little view. Seriously, you can hear cowbells from their patio.

Somehow my parents ended up coming over on our 1-year anniversary. I guess they just wanted to be a part of the celebration. Eva had a great place in mind and we all cruised out there. It used to be the witch hut and witches would harass you during dinner. It had changed into the munching house and now cleaning ladies would harass you and occasionally break into song. It sounds a little crazy, but it was a wonderful and memorable evening.

I am just amazed that she stayed with me for a year. I count my blessings every day.

Friday 7/13/2007
My parents, George, Eva, and I went out for a run in the forest and fields across the street from her folk’s home. Check out my mom running by those cows.

Again, I love the wheat fields.

Up in the hills a bit, there is a tiny little lake, named Egelsee. Try to guess the translation (hint Stand By Me).

My dad and I sucking it in for the camera. It is a wonderful thing to be able to take a little dip halfway through a run.

Later in the day, my folks and I drove down to Saas Fee (basically on the other side of Switzerland, only a 3 and a half hour drive). To get through one set of mountains, you drive your car onto a train and then the train goes through the pass. Why we do not have a train that could do this along I-5, I do not know.

Saturday 7/14/2007
Here is the view from their patio in Saas Fee. Their place is right on the edge of town and looks right up into the mountains and the glacier.

We took two gondolas and another mountain train (this one was just for people) and ended up at Allalin at over 3500 meters above sea level (about 11,500 feet). Spectacular views and just amazing to think about walking on a glacier.

The world’s highest revolving restaurant. How could we pass that up. The Swiss network of restaurants and mountain huts is pretty amazing. You could hike through the Alps, stay up at elevation, have a roof over your head, a steak on your plate, and a beer every night, if you wanted to. Not into hiking up hill? Just take the gondola up. What a way to rough it.

At Allalin, they also had the largest glacial gallery in the world. They had hollowed out a bit of the glacier and had all sorts of ice sculptures and even a couple slides for the kinds. Quite a unique experience.

We hiked down from the middle station and were just overwhelmed by all of these beautiful wildflowers. Here is a cute one of the folks.

I could not help myself, and ended up frolicking through this field moments after I took this photo.

Sunday 7/15/2007
Today we did it the hard way and actually hiked both up and down. We went up to a restaurant called Hannig. On the way, we passed a place called Hanneg and there were a handful of times when we would come to a signpost that indicated two different directions to Hannig. Sort of the all roads lead to Rome phenomenon.

Here is the signpost at Hannig. Hmmm, so many choices. Which one has lots of beautiful flowers and spectacular views? Oh, all of them, OK. Note that there are four signs pointing towards Saas Fee.

Mom and I trying to look stoic.

Again, we love the cows. We just never get this close to them in LA. As Cletus would say, “Hey ma, look at the city folk all hibily nibiliy about dem dare cows.”

Monday 7/16/2007
We did it the easy way again and took the gondola up to the land of marmots. Cute little buggars. We were stoked to just see them let alone be surrounded by a few.

I think my dad is communicating with this one on some basic level. He must be their leader.

On our way back up to Zurich, we stopped for a few hours in Bern. Here are the folks in old town waiting for the clocktower.

As the bear is the mascot of the city, they have “bear pits” across the bridge from the old town. What is a bear pit? Well, the name pretty much says it all as it is a sunken enclosure, a pit, with a couple of bears in it. It is sort of like one enclosure from the zoo, right there in the city, without the rest of the zoo. Anyways, the bears seem to be well taken care of. It was really hot when we were there and apparently that got them in the mood. If you chuckled at this, ask my dad about the bats in Portland. Make sure you have a few minutes and don’t expect the response to be G rated.

Tuesday 7/17/2007
Eva and I arranged for a chemo session while we were over there. The Swiss doctors were really kind and wonderful and it was a totally different experience from UCLA. The hospital was out in the country a bit, and certainly did not care for the numbers that UCLA can handle, but it was still amazing how quiet the place was. You could actually get some rest there. You could look down the hallway and not see anyone for ten minutes at a time. The room was large and sparsely furnished and probably would have been split up into two rooms in America. It was very nice, though I did miss that adorable little fuzz ball. I got Mitomycin C and some cheap Erbitux, sweet.

Wednesday 7/18/2007
I was feeling OK, so my parents and I went into Zurich for the day. We checked out the Chagall windows in Fraumunster.

And then went up into the bell tower at Grossmunster.

If any of you are wondering, the stories you have heard about Europe are true. Women will often swim or layout topless. Now I am a happily married man, but if someone were to find themselves in the tower at Grossmunster with a good telephoto lens, they may get a little treat. Or I guess you could be less creepy and just go swimming. Just don’t stare.

One way of celebrating Swiss Independence Day is to gather around after dinner and explode a table bomb. Now Americans are usually a freaked out at the idea of bombs and especially one that you would put onto your table, but this was really cool. You light the fuse, enjoy the moment of anticipation and Boom! Party hats, toys, prizes, and streamers go everywhere. We wanted to bring one back but, somehow, I just do not think that it would have made it through security.

Saturday 7/21/2007
George the son and Susi came over for the weekend and it was really nice to see them. Susi, Miluse, and Eva spent some quality time in the kitchen and the boys just got to sit back and reap the rewards. Maybe this old world mentality is not so bad.

Sunday 7/22/2007
George the son, Susi, Eva, and I went to the Reuss River for the afternoon. In addition to hanging out, taking dips in the river, and jumping off of bridges, George had brought a new toy, the slack line. This was a little intimidating but really fun. It takes a little while to get a feel for it but after about a half hour I could walk the line for about 10 seconds.

George was pretty good and could actually walk from one end to the other and back.

He could even maintain his focus when I was trying to distract him.

Susi was also pretty skilled at the slack line.

Wednesday 7/25/07
The 25th was Eva’s birthday. I tried to spoil her as much as possible by giving her a few gifts throughout the day. George had arranged for us to take out a sailboat on lake Zurich, which was really nice.

Eva and her mom. How cute.

It was a gorgeous day but the wind would sort of come and go. In the lulls we would swim or find other ways to amuse ourselves.

Another cute one of Miluse.

Here we actually were going a bit and I thought Eva was having fun being taken for a ride. She waited a minute and then asked if I could lower the ladder for her. Luckily, she had a smile on her face the whole time.

Hey, if you crop out the belly, I don’t look so bad.

Friday 7/27/2007
We left to head back home and somehow we came back with more than we took. How does that always happen? We flew American on the trip back and though they still left much to be desired, it was much nicer than the fiasco on the way over (until we got onto that Swiss Air flight). Again it was a great trip and Eva and I had a wonderful time. Hopefully we will be going back soon.

6-28-2007 Switzerland (1)

2007-06-28T02:48:00.000-07:00

Thursday 6-28-2007
The plane ride was pretty mellow. Eva thinks that she attracts kids as the flight attendant reseated the row in front of us to allow a family to sit together. We were a bit worried as the kid was a little restless and whiny for the first hour, but luckily he settled down and was pretty quiet for the remainder of the trip. The flight was pleasantly uneventful. No nosebleeds, no passing out (not that that has happened, but you never know). I was amazed that I was not even asked at the security checkpoint about the two syringes in my bag (lovenox). One part of flying makes it a little uncomfortable now are my undergarments. I now wear my jobst stockings whenever I fly for a long time and as I usually wear pants with them (so that I do not stand out), the combination can get a little warm sometimes. Also, between the stockings and the boxers, sometimes my boys do not know which way is up. We arrived on time (got to love Swiss Air), and it was really nice to see George and Miluse at the airport. It had been quite a journey, but eventually, we made it to Switzerland. We all made our way back to Rudolfstetten, and then had a big dinner at the house. We got situated in Eva’s old room and eventually fell into bed.

Friday 6-29-2007
We got up and had a nice breakfast together and George and I went to Zurich and George played tennis. After tennis, we went to pick up a new TV that George had ordered, brought it home, and set it up. It was some good father son-in-law bonding time; boys with toys.

Saturday 6-30-2007
In the morning, Eva and I got out for a little run/ride. Their house is basically on the edge of the little village and a little forest is right across the street. Surrounding the little forest, are some fields with cows as well as a bit of farmland. No joke, you can hear the cowbells when we eat on their patio or if a window is open. Here is Eva all bundled up on the patio.

Just another word on bells, every little village has a clock tower and about every fifteen minutes one clock tower or another is going off. If you ever wonder why the Swiss are so timely, it is pretty obvious once you get here. They have been hearing bells every fifteen minutes of their life since they were born. After a while it just becomes ingrained into their being. Our workout took us through the little forest, through some fields, up into another little forest, and to a small lake sort of nestled in the hill. It was really pretty and just a wonderful place to have grown up. I may have been when I was younger, but I cannot remember specifically if I had ever run or biked through wheat fields. They put a smile on my face for no other reason than that they are just calming and pleasant. When we got up to the little lake, Eggelsee, There was a mama duck with four little ducklings, adorable. I had to walk my bike up a few of the hills, but all in all I got a really good workout. The remainder of the day revolved around food and catching up. Recently, my father and I have been very proud of ourselves for finding that basically anything wrapped in bacon is very tasty. As it turns out, the Swiss have already come to the same conclusion and prewrap quite a lot of different things right there at the meat counter. Here are some bacon wrapped filets and they also had bacon wrapped chicken and bacon wrapped sausages (mmm...so good).

Sunday 7-1-2007
Sunday was similar to Saturday though this time George came with Eva and I on our run/ride. With George along it was more of Eva going for a run and us going for a ride. We would take a different way and then meet up with Eva at different points along the way. We got a little worried, as she was still not home about 45 minutes after we got back. I thought that either something might be wrong or she was just chatting it up a bit. Turns out that she said hello to an elderly couple, they got started jiber jaboring, and 45 minutes later, Eva managed to break away. It was tough, but the rest of us managed to enjoy our lunch without her. We figured that it would not be a good idea to go out searching for her on empty stomachs. Sunday evening, we went to a chamber orchestra performance in a converted church. It was really nice music and well played though I thought that leaving and returning four times during the applause was a bit much. Who do they think they are, Americans? They do not mess around with the perks here in Switzerland though, included with the ticket was wine at the intermission and a long stem rose upon our exit. Not too shabby. Here are Eva and her mom before the concert. How cute.

Monday 7-2-2007
Eva, Miluse, and I went to Spreitenbach (I am sure that I have just misspelled it but oh-well), which is the mall in the next town over. Even though their house is only about 30-40 minutes from Zurich (the largest city in Switzerland), they really do live in a little village of only a few thousand people. The villages are really defined as well and there is always a bit of farmland or forest that separates the villages. In LA, when we drive from San Pedro to our apartment near Beverley Hills, we drive through probably a dozen different communities but you would never know it because they all run up against each other. Just one of the many little differences that you might notice in Switzerland. The mall was fairly similar to any mall in America and our first stop was H&M. Last fall, we were pretty excited that an H&M was coming to the Beverly Center, though when it arrived, it was a lot different than the one in Switzerland. I do not know if they were playing to the Hollywood crowd but we prefer the Swiss version – nicer clothes at cheaper prices. The usual protocol is to take care of me quickly, then put me into a safe place, like the food court, and then Eva and her mom will go off shopping for a while. This trip stuck to the plan as I found a few nice things, got set up in the food court and Eva and her mom were off. They found a few things, though they did not come back with bags and bags as would be expected from a really good day of shopping.

Monday evening, George (the son) and Susi came over to the house for dinner. It was wonderful to see them and great to hear about what they are up to. Susi just finished her studies at the university (Congrats Susi!) and George is working to finish up his PhD. It was another nice dinner and good times.

Tuesday 7-3-2007
We got up and all had breakfast together and then George, Susi, and Miluse were on their way to Zurich. Eva and I hung out and enjoyed the house for the better part of the day. I brought a few books on instruments flying and have had some fun reading about it and then also using flight simulator on my computer. I was proud of myself when I flew from Santa Monica to Long Beach only using instruments on the computer. Eva gave me a high five, she is so supportive. We spend a lot of time out on the patio so here I am.

Wednesday 7-4-2007
Again, we took it pretty easy in the morning and eventually made our way out for some activity. We went to the nearby pool to do a bit of swimming. I had thought the pool was nice when I had visited on earlier trips but apparently it was not nice enough as they had redone the whole aquatic complex between our trips. Eva is wonderfully tolerant of my splish splashing and attempts at swimming. She is so graceful, smooth, and fast. I can keep up for about half of a length and then I get tired and start flailing about.

After swimming, Eva and I went to the local hospital to meet the doctor and take care of all the details for the infusion, which should be the following week. Dr. Stelzer was very kind and the whole meeting was very pleasant. The hospital we went to was fairly close the house (a bit out in the countryside) and was a pretty nice hospital. The oncology floor was amazingly quiet. It seemed as if it was deserted. Granted, UCLA and Memorial serve many times more people than this hospital (the population of LA is about half of the total population of Switzerland), but it was still a bit eerie. You could look down the hall and not see anyone for ten minutes. It looked as if you could actually get some rest there as opposed to UCLA where your vitals need to be taken every two hours and sleeping longer than that interval is unheard of. Dr. Stelzer was a really nice person and was genuinely interested in making sure I was well taken care of. I think she was a little surprised at how many different chemos I have been on over the last year. The list just got longer and longer but Dr. Isacoff has done a great job so far. I had my travel cancer binder with me and she actually took it to look over, we think, out of curiosity and interest more than necessity to care for me. I have been very fortunate to have come into contact with very caring doctors. She spoke English very well though a few of the subjects were pretty hard to translate, in which case Eva would usually step in and make sure everything was clear for everyone. You have to trust your wife very much when she is the link between you and proper medical care. Luckily, I do trust my wife immensely and am confident that she will make sure everything goes according to plan.

Before I went to bed, I called my folks and we actually had a little video chat. It was really nice to see my mom and dad as well as my aunt Karen and Uncle Terry who were over for the fourth. My dad found a little American flag to hold behind them while we were talking to give me a little sense of the holiday. The video chat worked pretty well and it was rather amazing to be looking into my living room at home from 5000 miles away. It does have its drawbacks and takes a little getting used to but it was pretty fun. My father could not resist picking his nose or putting bunny ears on my mom. It was really nice to be able to share in their celebration of the fourth a bit. After we finished, they were barbequing on the patio and then were off to the Galaxy game and were going to watch the post game fireworks from the stadium. I heard later that the fireworks were really nice and my mother said it was really refreshing to hear, even in this jaded world of ours, the “ohhhs” and “ahhhs” of genuine enjoyment of their group as well as the people around them.

6-21-2007 Week before trip to Switzerland

2007-06-21T05:03:00.000-07:00

Thursday 6-21-2007
Once Eva and I got back from Park City, we had to make sure we took care of a number of things before heading out to Switzerland a week later. Thursday was spent tending to the house and running a few errands. I met my mother at CostCo to do a bit of large-scale shopping and then met Jairo, Carlos, and Joey for lunch at Baja Fresh right there in El Segundo. It was really good to see a few of the guys from work and catch up a bit with them. They all seem to be doing well and everything sounds pretty much the same in the lab. It was a bit amusing to hear that the most recent reorganization seems to have undone the reorganization that was implemented a few months before I left. Hopefully, everything will continue to go smoothly and I will be back there fairly soon. It would be nice to get back into something of a normal routine.

Friday 6-22-2007
This would be my last opportunity to fly before our trip so I arranged for a plane and called up my college buddy John, who lives in San Diego, to see if he was up for lunch. Turns out that grad students have fairly flexible schedules and he was up for a late lunch. It was pretty exciting as this would be the first time that I would go somewhere new without an instructor. I studied the charts and found that Montgomery field looked like a good option though it would be a bit tricky to get into their airspace as it is situated between the San Diego International airport and the Miramar military base (both are pretty busy airports). I pre-flighted and eventually got on my way and had a really nice little trip down. I flew over a little regatta in the Long Beach Harbor and had fond memories of sailing and racing with Nick (though we usually got our asses handed to us).

I was constantly checking my chart to make sure that I knew where I was and that it was OK to be there. Air traffic control routed me through to Montgomery field and no fighter jet buzzed me, which was nice. When I got near the airport, I asked for the big runway on the right but they gave me the little runway on the left and that ended up being the skinniest runway I have ever landed on. It did not look much wider than an average city street but everything went OK. This was my first time using transient parking as well, which was also a little interesting. I did not really know what to do but it seems that it is remarkably similar to a parking lot for a car. You just find a good spot, tie down the plane, and off you go. There were not even any parking fees as long as you were just there for the afternoon (parking overnight was a whopping $5). What a world. John was there when I landed, saw me circle around the “lot” a few times and after I got situated we went off to lunch. He had a nice little place in mind that he told me was a bit of alternative Berkeley right there in the middle of trendy San Diego. We drove into a little strip mall that looked like a thousand other corners all across America, and walked into a Thai Vegan restaurant.

Why I flew down to San Diego to go to a Vegan restaurant, I do not know. Actually, the food was really good, even the “chicken” in my chow mien was pretty tasty. It was great to catch up with John and he seems to be doing well. Him and his little lady were going to take a big step in the relationship as they were about to embark on a road trip to John’s home in Corvallis for a family reunion. If she stays with you after this, John, you know you have a keeper. John drove me back to the airport and I made my way back to Long Beach. The flight back was pretty uneventful, though fun and I was pretty stoked when I got back onto the ground safely. I went back up to LA and then Eva and I went out to a Happy Hour at 3rd Stop with a number of her coworkers. It is pretty amazing how much people will tell you if you just show a bit of interest. Her coworkers are all really nice people and as soon as Eva and I showed some interest they were off and running. We did enjoy it, though, as we are leading the boring married couple life and like to hear about drama as much as anyone else.

Saturday and Sunday, Weekend of 6-23-2007
I spent most of the day cleaning up the apartment, though eventually we made our way down and I joined my parents at a Galaxy game (thanks to the Pete and Sydney for the tickets). Pretty exciting game and we thought the home team might come from behind, but they just could not pull it out.

On Sunday, I got up and went to play a pick-up game of soccer with my dad. It had been a long time since I had played a bit of soccer but it was really fun. The old guys ran me ragged. I still have something resembling a touch, and I can go for about a 10 second burst of activity, but my endurance is basically non-existent. I would make a run and then need a few minutes to recover, during which I was basically useless. I did find that I could be somewhat effective by receiving and immediately distributing from the back and I actually got a second assist using that approach. A number of times I would take a knee to recover, and then, when I stood up, I would get pretty light headed. Luckily, I managed to not pass out though I felt pretty close a few times. After the game we sat and chatted with the guys and it was really nice seeing Mike Sanders and Al and Lee and Big Dennis and the rest. My dad really has a nice group of buddies. Mike was telling me about a few of his little flying adventures while he was over in England recently and Al is halfway through a remarkable summer as one of the two weddings went off without a hitch (or with a hitch, depending on how you look at it) and the other looks to be coming together pretty well.

Monday 6-25-2007
In the morning, I headed over to UCLA to pick up a month’s worth of Lovenox and Xeloda.
In the afternoon, I had to hone my skills by playing as much Street Fighter 2 as possible while still trying to get everything ready for the tournament that took place in the evening. I had prepared lasagna and cookies the night before and put together the last few details right before everyone came over. In total we had about 15 people over and almost everyone took part in the tournament. Most of them were from Eva’s work and were trying to establish the SF2 pecking order at work. We were hoping that Ariel would be the spoiler but unfortunately she lost in the semi finals. Aaron came by and it was really nice to see him as it had been a while and I had just caught up with the rest of his family. He put in a good effort though did not get all that far. After all the dust settled, the title went to Dameon and he took home a chocolate duck for his superior SF2 abilities. Eva had actually played for the first time earlier that evening and somehow managed to beat a few people. What a competitor.

Tuesday 6-26-2007
Most of the day was spent running the last few errands before our trip and taking care of things around the apartment. In the evening, my folks came up as well as Steve and Collette for a fridge clearing dinner. It was really nice to see my folks one more time before we took off and it is always fun to see Steve and Collette. They are such a cute couple. They had taken a big step recently as Steve went with Collette back to Texas to visit her family. Apparently, everything went well as they are still together (not so for Ann Marie’s boyfriend, I guess he could not keep her interested after spending a weekend in Vegas with her and the rest of the family, Steve and Joey liked him and they hung out, maybe that was the problem). After dinner, we finished our packing and mentally got ready for the early morning and long day that we would wake up to.

Wednesday 6-27-2007
We woke up early, closed down the apartment, and then got picked up by my mother to go to LAX (Thanks Mom!). We were going to Zurich by way of Dallas and our flight to Dallas took off at 8:35am. We figured getting to the airport by 6:30am would give us plenty of time to make the flight but it did not look so good once we pulled up to the curb. Fiasco became the word of the day and it all started at the American Airlines terminal. There were lines all over the place and even the employees did not know which line we should exactly be in. After being sent to three different lines, we finally ended up in the right one that was moving at a snail’s pace. We were in line at 6:45 and did not get up to the desk until 9:15am. We asked a few times if we were going to get pulled out of line to make sure that we would make our flight but they seemed unconcerned. When we finally got up to the counter, it was looking like earliest availability for Zurich was going to be at least 3 or 4 days away and this just was not going to fly with Eva or me. What had happened, was that there was a lot of rain in Dallas, which was causing a lot of problems. That morning, there were 3 flights from LA to Dallas that were all around 8:30am; two of them were canceled, ours was not. All of the passengers for all three flights were waiting in the same line to check bags. So, even though our flight was not canceled, we had to wait for the people at the counters to find alternative flights for the other passengers, which then caused us to miss our plane. Fiasco. We asked why they had not pulled us out of line to make sure that the people whose flight was still going were able to catch their plane, and their response was that there was a bit of rioting that was started by a similar situation earlier in the year, so they no longer pull people out of line. Eva and I did notice that, as the morning went on and people were getting madder and madder, there were more and more police officers standing around the terminal. We pleaded with the woman at the counter, explained that we had arrived at 6:30am, said we were willing to go be routed anywhere, I reluctantly mentioned that I have cancer, and, eventually, we got booked onto the next day’s Swiss Air flight from LA to Zurich. This was acceptable to Eva and I and we were on our way. We then went over to the Tom Bradley Terminal and were going to see if there was any space on the same Swiss flight for the same day. Swiss only has one flight a day and their counter was occupied by another carrier so we got onto the reservation line and while we were on the line, a few seats opened up. Unfortunately, because American bought the tickets, we then had to call American and get them to try to change the tickets from tomorrow to today. This was another big fiasco but eventually it got done. It had been a rough morning but it worked out pretty well in the end. Sure we suffered in line and would get to Zurich about 8 hours later than expected, but we got onto a much nicer carrier and were on the direct flight to Zurich. We called my mom again and she came and picked us up from LAX (Thanks Mom!). I think we looked as though we had been traveling all day, though it was still before noon and we still had not gone anywhere. We had about 5 hours to kill, so we went down to San Pedro, got In’N’Out on the way and took naps at the house. Eva and I each fell into a deep sleep, which recharged us a bit from the draining morning. We through our clothes into the washer for the benefit of our future traveling companions and went back up to LAX (Once again, Thanks Mom!). There was one more hiccup with the tickets but we figured it out, got our boarding passes, and had our bags checked all in about an hour (as it should be). We then grabbed some dinner with my mom, thanked her repeatedly, and went off to security to make sure that we got through in adequate time. After all was said and done, we made the plane and had a pretty comfortable flight over to Europe. Again, what a scene. American Airlines was just shooting themselves in the foot. With us, they could have pulled us out of line, made sure that we made our flight, and been done with us. Instead, they caused us to miss our flight, had to rebook us onto a more expensive carrier, and spent at least 4 times as much time and effort making sure they fulfilled their part of the travel agreement as would have been required if they had just gotten us through efficiently. Sure they say that they cannot control the weather, but if you have been having bad weather for the last 3 months, and all predictions are that it will continue, maybe you should start working on alternate plans a little earlier than the morning of. Anyways, sorry to rant a bit, I am done venting for now.
-TN