When medicine fails

I've been a mess lately....emotionally speaking mostly. Since I first was treated for thyroid cancer back in 2005 until now, I've had 2 friends with whom I've been close or connected with basically the same age as me, go through their own experiences with cancer treatment. Now they're both gone...both in their twenties or early-thirties and both after having gone through 'cures'.

The first died of a relapse of his cancer in 2008, 3 or 4 years after he was first diagnosed. I think he was 25 or 26.

The second is gone because of a complication associated with the treatment of his leukemia, a process that began soon after he was in remission and continued and worsened for years. And over those years, this friend and I have both gotten married, moved on with our lives in many ways, and essentially both of us stopped climbing, so we didn't have that common shared activity any longer which originally brought us together. I had no idea what was going on and how bad his condition had become. After talking to his wife yesterday, it sounds like hardly anyone knew how much pain he has been in (lesson-stoicism can be extremely stupid). I'm not sure how appropriate it is too tell the story of this friend here. But, his death, like my other friend in 2008, hits incredibly close to home.

Leukemia is a cancer of white blood cells. When someone has leukemia, there are multiple cellular and genetic events which define the precise type of leukemia, but in almost all cases, treatment involves ensuring that the source of white blood cells, which is the bone marrow in adults, stops producing the cells which constitute the cellular component of our blood and most of the cells of the immune system. Of course the mutation or abnormal cellular event is only in one particular type of cell, and that cell basically makes clones of itself over and over again until the person's bone marrow, blood, etc are filled with a clone of that original cell. Without addressing the bone marrow, there's no way to ensure that the original cell (or at least the most stem-like cell of the cancer) is killed. So, patients get chemotherapy and radiation to kill of the rapidly dividing cells, then their bone marrow is ablated and they're given a transplant of stem cells that should go to the bone marrow, re-populate it, and rejuvenate the production of new platelets, red blood cells, and white blood cells. Sometimes the stem cells that are given come from another person, other times they are one's own stem cells.

A potential consequence of receiving white blood cells from another person is that some of these cells may have the potential to recognize the patient or recipients body as foreign, and begin an immune response against it. This process is the outline (although many details are left out for the purpose of simplicity) of a disease process called Graft vs host disease, or GVHD.

My friend that just passed away died from complications associated with GVHD. He died in the hospital after having been there for a month completely sedated and on a ventilator because he could no longer breath under his own power. The disease process of GVHD was causing an immune response that incited a genetic program associated with wound healing, where fibrotic tissue was being rampantly deposited all over his body. For him, the space surrounding his lungs were incased in this restrictive, fibrous mass and essentially this tissue inhibited him from breathing. He was slowly suffocating to death and as far as I can understand, that was part of the reason why he needed to be on a ventilator. The other reason for the ventilator was that in order to treat his GVHD, he had his bone marrow ablated again and received another stem cell transplant, essentially hoping that they could treat the GVHD like a cancer. The process where the transplant engrafts back into the marrow is incredibly painful, so the sedation and ventilator were also meant to help with that.

After a few weeks on the ventilator, it became pretty clear that he would not be able to breath on his own again. I don't know how the decision took place, but when I spoke with his wife on the phone yesterday, the decision had been made to take him off the ventilator and to let him pass.

If you want to read about his experience, he and his wife kept a blog here. The first time I read through the blog, I was crying and literally shaking, so be warned. The mix of anger that this happens, with guilt for not being able to do anything, and an incredible amount of sorrow for his wife is all culminating into this incapacitating dark place or uncertainty and fear.

Climbing was our original shared interest and allowed us to make our acquaintance. But when he was treated originally for his leukemia back in 2006-2007, I was working in a lab at Wash U, the year prior to going to medical school. My lab was pretty close to his hospital room and I went and visited quite often. I recently received my 2nd neck surgery and at that point had 4 radiation treatments, so even though his leukemia was considerably more severe than my cancer, we were brothers of sorts. He was one of the only people in my life besides my wife who I really talked to about having cancer.

Now I'm in this state of shock and hurt and anger. My mind can be so self-centered and of course, always wants to use fear to project a similar situation for me and Maggie one day. Fear, projection, hatred, anger...these are what currently summarize my feelings that summarize the devastation associated with this story.

To this day after my first friend died back in 2008, I talk to him, usually when I'm on my bike. Maybe this would all be easier if I had a clear ethos about what the hell happens when we die. But even if I did, I'm haunted by the thought that both of these two friends were relieved when it finally came. Of course we can never really know, but from some of the writings on the blog, it was clear that sometimes a desire for the release of death is the plan B for when medicine fails.

Nationals

I wish I had a great story too tell about the last cross race of the season. But instead, it was something of a blur and also a disappointment.

Dwayne Goscinski and I both showed up to Madison around 2pm on friday. He drove from St Louis and I came from South Bend, IN where I had been working the prior week.

The course wasn't particularly complicated, but on friday it was wet, loose, and messy mud. The temperature had a lot to do with how the course would feel. If cold enough, the frozen ruts would be like ice...you'd hop into one and hope that it doesn't collapse underneath you or lead you into the tape. But if warm enough, it would be a standard mud course with lots of power sections. During the pre-laps a little before 3pm on friday, almost no one was riding the steepest section of the first hill. People were loosing their rear tire and running.

I hoped it would freeze and be fast. It turned out that was a hope based on poor assumptions and inexperience, as indeed my race was slightly frozen and the mud much more firm than in the pre-lap riding I had done. This turned out to prove very challenging. My race wasn't really very exciting. It is almost a standard story for me; I was riding well and fast, then I crashed towards the end of the lap, dropped my chain, lost 10 spots, hopped back on and lost my cool, so crashed again in the sand a few hundred feet later. And that was the end of my confidence.

I wish life were less complicated sometime. I had a bunch of time to reflect on the almost 8-hr drive home on sunday. I think I'm scared for 2012. Maggie has some big decisions to make in terms of what kind of doctor she's going to be. Balance in my life between work, passion, and health seems tenuous at the moment and I just generally feel scared for my health again. I'm not really sure why as I have no tangible signs of a change or decline. But it feels somewhat inevitable I guess and for some reason more looming at the moment.

There is a very interesting article over on Outside magazine about Livestrong and Lance. Anyway, I have a ton of thoughts about this article. At the moment, I'm feeling extremely worn-out and tired from the holidays and travels associated with bike racing. The spring semester starts next week so I'm trying to rest up, do some reading, and just generally have some meditation/prayer/quiet time.

First week of 2012

I've been in South Bend Indiana this week as a visiting scientist working in my PhD menor's lab. There's a bunch of snow on the ground and I've been resting a bunch after the racing this past weekend, so I've only been out on my bike once.

However I have had some time to think abou this next year.

This was/is extremely helpful in the whole new years resolution assessment: http://www.prana.com/blog/2012/01/01/handbook-for-life-2012/

Of all the things on that list, as a 32-year-old father living with cancer, you'd think I'd be thinking most about the 'health category'. But it is actually the following list which strikes me as the most important at this particular time in my life:

PERSONALITY:
11. Comparing our lives to others is fruitless. We have no idea what their journey is about.
12. Replace negative thoughts with positive ones especially about things out of our control. Invest energy in the positive present moment.
13. Try not to over do. Understand limits.
14. Why take ourselves so seriously. No one else does.
15. Gossip drains precious energy.
16. Dream more while we are awake.
17. Envy is a waste of time. We already have all we need.
18. Forget issues of the past. Let go of our partners mistakes of the past. Focus on our present/future happiness.
19. Life is too short to waste time hating anyone.
20. Make peace with our past so it won’t spoil the present.
21. No one is in charge of our happiness except us.
22. Realize that life is a school and we are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class but the lessons we learn will last a lifetime.
23. Smile and laugh more.
24. We don’t have to win arguments. It’s ok to agree to disagree.

New years week

Really amazing couple of days to transition between 2011 and 2012. Hectic for sure, but also a really nice travel experience, fantastic racing, and lovely company with my wife and me getting a weekend away from the kiddo to celebrate our anniversary.

Racing-wise, there's a lot too say but I'll try and keep it to the business:

Wednesday night in KC- Got in a group with Steve Tilford and Brady Kappius after the first lap. Felt very good but regretted the last minute choice of putting a file tread in the rear, as I found myself slipping out in some of the corners. Great race with Brady, we were back and forth the whole race and it came down to the last stretch where he jumped the barriers and I ran. I then missed a pedal and he got a gap which he held to the line. I'll take 3rd to Brady and Tilford and ended up with a great USAC point value for that race.

Day 1 @New Years Resolution- drew a starting spot almost dead last. Fought hard and ended up riding around 12th-13th for most of the race but faded towards the end. With 2-to-go I came through the start/finish and got pulled unexpectedly with the guy who ended up 15th, so I finished 16th. I was surprised and disappointed to get pulled when I did, but I rode a clean race despite struggling with the high-end fitness. So, I let it go and planned for day-2.


Day 2- I was stoked. I had a great NYE/annivesary with my wife in downtown chicago and managed to get to bed at a reasonable hour. I woke up feeling good, drew another almost dead-last starting spot, but was ready-to-go. Pretty much all went according to plan. I tried working together with a bunch of the guys riding around me, but it is really hard when the wind is so destructive and the mud, so sucking. Anyway, with 3-to-go, I figured it was our last lap. I worked my way up and came across the line around 13th, only to not get pulled like I expected. So we headed back out for another lap, knowing full well that Trebon and Powers would be lapping us. The guys finishing 13th-17th managed to last until about .25 of the lap, at which point we were summiting mini-Mt Krumpit part 2 and the pain-train was beginning the ascent. I decided to not get in their way prior to the sand pits so pulled over. The guys I was with didn't take the same approach, so I was gapped badly and ended up getting pulled at 16th position, but was scored as 17th. Considering my wife was pitting for me (so I wanted to do her proud) and I felt so good and thought I planned well, I was pretty bummed with the result. But, there isn't much I can do.


At this point I'm having a hard time finding the motivation to summon much enthusiasm for this last week. Sometimes bike racing is just plain frustrating and there isn't anything you can do about it. Sometimes you try and do the right thing, whether it is be nice or get out of the way, and you end up getting ignored, run-over, or just plain taken advantage of. But that isn't just bike racing. That's pretty much life.

I guess the drain on my motivation has to do with what looked like a good plan on paper, not feeling as good in reality. My wife and I planned our anniversary in Chicago around the UCI chicago race. I was then going to spend the next week doing some experiments in my old bosses lab at Notre Dame, and as such, would be away for an additional week. South Bend is currently getting pummeled with snow, so I'm stuck in Chicago alone because my wife flew home today. All I can think about is getting home. Racing next weekend seems like a joke compared to getting home.