Changing Plans

or: I just can’t go into a contest believing I am going to lose.

  • Originally published October 3rd 2016: I am moving this over from another location. I’m killing the blog where this used to sit.
  • UPDATE: I am now several months past the median time to relapse according to all the pre-TKI data I had and all tests are still showing me as completely clear.

When you first get diagnosed with ALL the way I did you literally get thrown into the hospital. I may as well have been abducted by aliens. My marrow was at least 94% leukemic cells (I was basically dead) and yet had shown almost no symptoms until 10 days before. The human performed test had a handwritten note that said “I cannot find functioning marrow in this individual ~= 100%”.

I went into the hospital with painful burps, and 36 hours later had cried for a full day and had a 12 inch Hickman Catheter hanging out of my chest but I didn’t know why. Later I found out that they had chosen that instead of a port because survival odds in a person my age are so much higher if I received an allogeneic stem cell transplant (60% vs 15%).

That is a lot of red right? Easy choice right? Not so much.

I think most people in this situation have their decisions made for them. You are in panic mode, confused, getting honest advice on survival tactics from your doctors, and decisions are often being made by family.

Well for better or worse, I like to take control of decisions in my life, and that often means collecting data, so that is what I did. I read everything I could find on the topic from approved sources.

Approved Sources:

  • NIH
  • Medical journals that my doctors had semi approved

As I read I consistently noticed a pattern. There was a second window of things no-one was talking about and it was rather large. There were some guaranteed quality of life issues with transplant and it crossed a broad spectrum. Very few people come out the same as before and a small percentage (1/10) according to several of my medical staff at SCCA would probably wish they had opted to risk death instead of choosing the transplant.

The spectrum is really wide here, and it is very unpredictable so I chose to only include those 1/10 in my calculations. If I am honest though I suspect the percentage is much higher when you factor in the guaranteed lost year to recovery, the 10–15% chance of other cancers down the road, the myriad other lower grade quality of life issues.

Short version, there are things worse than dying, and even factoring in only the worst of the worst, the window between the choices starts to shrink.

After that I decided to start heavily investigating what chances were of a successful transplant post relapse.

Now, there are some assumptions here.

  1. we could get me into a remission again post relapse (traditionally not as easy as the first)
  2. I would remain healthy enough to stay eligible for transplant after more chemo, relapse, time, and aging
  3. I would remain fit enough for a transplant at a later date

Due to the speed they got me into remission this time, my level of fitness now and my tolerance for taking a few risks, I am taking a chance and assuming these won’t stop me if it comes to it.

So, the official stats for long term survival post transplant in 2nd remission as handed to me by SCCA, Swedish, and several other reputable sources put the numbers at around 40%. Remember though that that is 40% of the 85% who did relapse, and so the pools is a little smaller.

Now combine those first two bars and you start to see a different picture.

Purple is my fave color so I gave that color to the best possible outcome:

  1. 15% of the people who opted for transplant were already safe after chemo and if they had entered into transplant would have been guaranteeing a certain loss in quality of life possibly dying for no reason.
  2. the total overall survival percentage is smaller than with a 1st remission transplant, but not as much smaller as you expect, especially when severe quality of life issues are factored in, around 44% vs 50%.

So at this point, which I had sort of come to about a month ago, I was seriously considering flipping a coin to make my final decision, but I was pretty sure I knew I needed to back out. I have spent my entire adult life competing to do the impossible against enormous men and NEVER have I gone into a contest believing I was going to lose. I have lost plenty, but I never believed I would going in and it was making me insane to believe I was going to do that now, even if the large man I was up against was just my own body gone wrong this time.

So right now, I am choosing to take a chance, bet on the highest quality of life possible, and will be ready (and terrified) if it comes back in a month, or 2 months, or six months, or a few years. I have plans to get a reminder tattoo that I’ll see every day to remind me not to waste the day.

I’d never have believed strength training for so many years would help prepare me for chemo the way it did, but it did, so I plan to get back to training like I am going to war with nature itself, because in my head I believe I am.

And even if the worst happens, and it comes back, and we can’t get a 2nd remission, and I die from it, at least I got to consciously make the choice that killed me. Which is something most people won’t ever get to say.