TL;DR: Donate to my baby hero fund at the link here. If/when we reach $10,000, I can establish a fund dedicated specifically toward young adult survivorship and GVHD. Also, if you have donated to St. Baldrick’s in the last year or shaved your head (or raised funds in another way) then you can direct that $$ toward this fund by contacting me!
First, let’s talk numbers. Statistics are not really that useful to me because I usually have approximately one option and I will live or die so who cares what the percent chance is. At this point, I have lived through enough sub-20% situations to know that it’s possible and if I don’t, well, I guess then it wouldn’t be my problem anymore. But I’m still going to take you through my thought process these past few years. And I’ll tell you the numbers I heard each time.
I was really afraid of dying for about one month. The night I was diagnosed, they told me 80% survive AML. I have never read that number anywhere since (it is always lower) so I have no idea where it came from. Once my first round of chemo failed, I somehow quickly accepted that I would likely die very soon, but I still very much wanted to live. The numbers ranged from 20-50%…never higher, usually on the lower end.
When I got grade four gut gvhd, I begged the doctors to sedate me. Every day. I didn’t want to die, just go to sleep and wake up when it was over. Wish we could actually do that. The 5 year survival for grade 4 gut gvhd is 5% (granted, peds patients usually do better). During this time, I also had a tacrolimus-induced grand mal seizure followed by sirolimus-associated TAM (really unclear survival, just bad overall).
When I went back to school, thoughts of my mortality faded. I am part of a community of people who die very frequently, and I mourned the loss of patients I knew either personally or via online support groups at least weekly. But death became a very normal part of my life, and I am not afraid of it.
When the scleroderma hit in fall 2017, I was very concerned that I would die. No doctor could tell me I was wrong. As I continued to spiral downward, to realize that my life was not going to be what I had expected, I wasn’t sure that this quality of life was worth it to me. But I still had hope that there was a possibility of (not a guarantee) a better quality of life out there for me. As the suffering became more and more unbearable, that hope was harder and harder to find. At each clinic visit, I had new progressions of gvhd. I felt my organs begin to fail as gvhd reached essentially every corner of my body. Simultaneously, I woke each day to yet another ability lost: first, the ability to walk to class, to do my laundry, to take out my trash. Then the ability to get dressed, to make my bed, to cook for myself. By the time I left school, I could do hardly anything but sit in my bed. It broke my own heart and I wasn’t even watching it. At one clinic visit, just one, I had some slightly positive results. I turned to my dad and said “I hope this doesn’t mean I’m dying more slowly.” We laughed. That’s all you can do. By this time, there were no more numbers. How can there be with such extensive involvement…but I will say that the case reports I read were not pretty.
When I went into renal failure in December 2017, my lungs filled with fluid. It was the exact same feeling I had experienced in December 2015, when my central line was misplaced and dumped liters of meds, tpn, and fluid into my chest cavity. That first time I experienced respiratory failure, my survival instincts kicked in hard. I wanted to live. Fix it, please. I was making a horrible sound trying to breathe, and the poor resident was straight up panicking. She told me STOP MAKING THAT NOISE. Hahahahhaha. Anyway, I told her to get out and go get the attending. I wanted to live and clearly she wasn’t going to help me with that. There are no survival rates for an error like this, because fortunately it does not happen often enough to warrant studies. But I will say that this is the first time I really thought I might die RIGHT NOW.
Two years later, in December 2017, I found myself in essentially the same position. The difference was that this time it was caused by my body failing – I was dying. But I could still turn that around, I knew. You can start dying then stop for awhile then go back to it later. I’ve seen it happen several times. While the ICU team worked on me, my mom told me “you are going to get through this.” I don’t know if she was trying to convince me or herself, because we certainly didn’t know that and she isn’t stupid. I said to her “I don’t want to.” It was true. Mortality for acute kidney injury in medically complex patients exceeds 60% (again, peds patients do better than this).
When I got out of the hospital, I wasn’t sure what would happen. But my kidneys had rebounded and it seemed like we had finally found the right combo of meds to treat the gvhd. I began to get better. I didn’t want to get better. Dying in a body like this is easy. Living is harder.
It’s April 2018 now. I am broken in so many ways, but I have a little more hope. I’m not sure what I want out of the rest of my life and what that will look like. Shockingly, there is still a decent chance that I will achieve a reasonable quality of life. Sometimes, even that isn’t enough. Even if I could have a life someday, how much can I bear to suffer to get there? I still think about that. I think I’m still figuring that question out. But right now, I’m improving. By no means do I have a quality of life that resembles even a fraction of what I need for a long-term life, but I’m improving. A long-term life, what the hell did I just write? It made sense to me so oh well.
I have hopes and dreams. Sometimes I can see them. Sometimes I can’t. But when I think about stopping treatment, I keep telling myself “not yet.” Right now I still have a little hope. There have been times throughout the past six months where I haven’t. There has been anger and fear and an immense sadness and grief that I never even knew existed. But my family has kept me going even when I couldn’t do anything for myself, not even summon the willpower to eat or take my meds. They made and are continuing to make it happen. There is a lot of love in this world, and I’ve experienced it from so many people. I don’t ever forget that, and I know how much I need it. I am getting through this. It is ugly, inhumane, barbaric, every awful word you can think of. We are in the infancy of figuring out bone marrow transplants and that sucks. The first transplant happened in 1956. The first transplant from an unrelated donor wasn’t until 1973 – it hasn’t been that long. The targeted drug that saved my life after induction failure wasn’t invented until 2006 – out of all the years of humanity, any time before 2006 I would have just died. I try to remember that.
These numbers all suck…and beyond the numbers, survival with a low quality of life is not a victory. I recently partnered with St. Baldrick’s in hopes of establishing a Hero Fund, which is a fund in my honor that I am able to direct toward causes that are important to me. My fund will focus on young adult survivorship and chronic GVHD. These have been bigger issues for me than my initial cancer, and I have struggled to find support. In many ways, GVHD not being “cancer” leaves it forgotten. But it is just as horrible, and many of us die of GVHD months or years after being “cured” of cancer. In order for the fund to be established, I need to raise $10,000 over the next year.
You can donate here: https://www.stbaldricks.org/fundraisers/mypage/3301/2018. Or just share the page – that helps just as much.
You can also redirect funds from any fundraiser for St. Baldrick’s in the past year (including if you shaved your head and raised money) toward my fund if you are willing to have it earmarked for young adult survivorship and chronic GVHD. Just contact me to let me know!
^Some fun facts about this pic: I was returning to school over a year post-transplant and ONLY (lol) had gut GVHD. Two months later, the chronic set in hard. First in my eyes, then my skin, then essentially the rest of my body. Poor baby had no idea what was coming. Also, I bought those shoes the day before I was diagnosed but they stayed pristine because I barely went outside for the next year and a half 😒