Still ok. Aug 2009

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

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

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

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

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

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

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