LA Cancer Challenge 2010

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









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

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

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

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

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

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