I am tired and I think it is time for us to have a come-to-Jesus blog experience.
I don’t think I have completely explained the specifics of my subtype of AML as they affect prognosis so I am going to go there.
For the first few weeks after I was diagnosed, my brain just shut off. My brain is normally way hyperactive, but there was this insane sense of calm. I think there was a day near the end of my first admission when I realized I had basically just stared at a wall for the past month. To get you to where my brain is at right now, I have to explain what happened next more thoroughly. We got the results from my first round of chemo. Some background info – I came in with 70% cancer cells in my bone marrow. This is on the high side for being diagnosed, but nothing super crazy. The first round of chemo is called ‘induction’ because it is supposed to induce remission. For the people who don’t get to remission, over 5% cancer cells is generally considered a poor prognostic indicator. 25% is considered failing. Well, I didn’t technically fail, but I got about a D-: 20% cancer cells.
When we got home from that meeting someone said something about how surreal this is and all I could think was that this definitely was not surreal for me anymore. It kind of reminded me of Tig Notaro’s comedy set the night after she was diagnosed – someone implied she must know all about some trendy cancer greeting cards and Tig was like ‘wtf, I was just diagnosed yesterday I’m not part of the subculture.’ Up until that point I felt similarly. After failing induction I began to officially consider myself part of the cancer subculture. Don’t get your hopes up for cancer references in my instagram bio or whatever but from what I have experienced families affected by cancer (especially pediatric cancer) really do have a subculture and it is pretty cool and supportive.
So for my second round of chemo we tried something different and for the entire month we had no idea if it was going to work. My first round of chemo was considered essentially ‘failed’ and it was time to think about options. This included clinical trials we would try in the event that my second round of chemo also failed. It also included thinking about end of life care because this was a much more real possibility.
It turns out there is a lot of paperwork associated with dying. Some of you will get away with dying unexpectedly and having someone else stuck dealing with it, but I guess it is common courtesy to ask your 19 year old kid with cancer where she wants her funeral and whether she is down with life support. And then you might as well write it all down on legal documents. But still, it sucked.
It was harder but in some ways it was easier. I thought in moments, hours, even minutes. I focused on making every day a good day because long term thinking felt like an ‘if’ and that is super depressing. My dad and I invented the zen space, which is basically just being in a positive head space but refusing to think in specifics unless necessary (it helps prevent ‘what if’ scenarios).
So when I told you all that I was in remission last week, it wasn’t really part of the plan. It was obviously the best surprise I have ever received, but it wasn’t really what I expected. I went back to Stanford during this weird little hiatus from illness and it felt weird. Obviously it was going to feel weird – these past 3 months have been insane – but I guess I felt like I had not been super thorough about what exactly has been going on and it is pretty tricky to get that stuff into a conversation. So I’m just going to say it here and hope I’m conveying what I mean.
Most people think of remission as that end goal where you’re done with cancer and you go back to real life, but the truth is that it just means there isn’t active, detectable cancer. So people with low/mid risk AML generally reach remission on the first round of chemo then do three more rounds of consolidation chemo to prevent relapse. In high risk AML, it is more of a race to transplant because you fear becoming refractory (which means it is unresponsive to chemo and you are basically screwed – this is what we were worried about when I failed induction). So as soon as you can get into clinical remission you go straight to transplant.
In acute leukemias, relapse generally happens in the first 12-18 months (because they are acute – if there are remaining cancer cells they grow quickly), so after this point you can tentatively consider yourself ‘cured.’ High risk AML relapses pretty often and you are considered even higher risk if you relapse. My doctor estimates that I have a 50/50 chance of relapsing post-transplant (assuming the transplant works).
This was a super dense blog thing – sorry about that – but I felt like context to this whole thing would be helpful. People are so excited for me about being in remission and I am so grateful. I am in a much better place than I was a few weeks ago. I think I am just getting a little tired. Life feels even more out of control when I consider the long-term. When we aren’t worrying about whether I will make it through a cycle of chemo then it ends up being about transplant complications and GVHD and the 6-9 months post transplant when I will have essentially no immune system and then the waiting and hoping I don’t relapse. Makes the road seem a lot longer and more daunting. My dad and I agree that staying in our zen space and taking it day by day is the only way to go but it gets trickier the longer you do it.
Anyway, I was admitted to the hospital yesterday for chemo and the transplant will happen on Thursday (Sept. 24). Today is the three month anniversary of my diagnosis. Shoutout to my brother who has to do GCSF injections daily for the next week to promote his stem cell growth so that he will have extra for me to steal. Wish us luck!