Diagnosis

2020-08-03

Hello from the hospital, where I’ve been for the last three weeks.

I’m in what’s known as a “hemonc” unit. “Hemonc” is short for “Hematology/Oncology.” Translating those words to their colloquial equivalents you get:

  • Hematology = blood
  • Oncology = cancer

Hm well this is not exactly sounding great, is it? Let me tell you, dear reader: it is not! I am here because I have been diagnosed with leukemia, and leukemia is decidedly not great.

Not everything about my current situation is bad though. There are in fact buttloads of amazing and wonderful things that have come along with this One Very Bad Thing.

One Very Bad Thing

It is leukemia, and I have it.

Many Good Things that Mitigate the Bad Thing

It is a very curable form of leukemia. The specific type I have is called acute promyeolocytic leukemia (APL), which is one of the most curable forms of the disease. And boy “curable” sure is a good word to hear shortly after you hear the words “leukemia” and “you” and “have.” I’ve heard versions of this absurd-sounding-but-also-quite-encouraging line from several doctors now: If you have to have leukemia, this is the one to get. Yep, only the finest of leukemias for me!

I am a low-risk patient. We caught this early (from a routine blood test before I had symptoms!) and I’m relatively young and relatively healthy, which pushes my already-positive prognosis towards even better odds.

I am under excellent care. The hospital I am in is one of the best in the country. I may be stuck in a hospital room, but for how nice this place is, it’s really more like a high rise hotel room (4 stars, great view, bed was a bit funky). Everybody, from the doctors to the nurses to the techs to the staff, has been unequivocally good at their jobs and wonderful to me. I’m experiencing the very best that modern medicine has to offer. It’s a massive privilege, and for me it’s been a source of endless fascination and awe. (More on this last bit below.)

My community is supporting the crap out of me. As I shared the news with the concentric circles of my people (family, friends, coworkers, and now you, dear reader!), I was consistently struck by this sense of activation in all of the relationships of my life. It was like all of the implicit bonds that I have with others were suddenly made explicit as people declared their support, their solidarity, and their love for me in ways both verbal and nonverbal. Before this I don’t think I would have reported having a strong sense of being rooted in a community, but I sure feel that way now, and I’m basking in it.

There is so much to learn! Once I got over the initial shock of the diagnosis, it quickly became clear that receiving weeks of inpatient cancer treatment at a teaching hospital is SYSTEMS NERD HEAVEN. The sum total of patient care requires massive coordination between an incredibly diverse set of actors: nurses, doctors, pharmacists, nutrition techs, maintenance techs, and more. I’ve gotten to witness (and ask annoying questions about) the protocols and practices of everyone around me. Endless fascination and awe! And this is before you even get to the actual medical science, which presents its own libraries worth of knowledge to curious cancer cats like me.

All of these things–the positive prognosis, the quality of the care, the support of my community, and the opportunity lean into curiosity–have been helping me to get through the scary bits of this nightmare and transform it into more of an adventure. It’s not a one way transformation–on any given day I could be flitting around anywhere on the nightmare/adventure spectrum–but I’ve been lucky to be spending the majority of my time on the adventure side.

What next?

I’m a bit wary of making any strong predictions about the future, since I just had one rather large assumption about not-having-leukemia thrown out the window. That being said, APL is well understood and the treatment plan is pretty darn clear. Barring any issues, it’ll be about 3-4 more weeks of inpatient treatment after which I’ll start an ~8 month course of outpatient treatment.

I’ll remain on medical leave while I’m in the hospital after which I’ll set a course back for work as I figure out what life looks like with the outpatient treatment. Everyone at my job has been wonderful: they’ve come together to cover for me so that I could totally factor work out from my brain while I’ve dealt with this. I’m very lucky.

Speaking of lucky, my wife Gabrielle has been in superhero-mode from the jump as both my anchor and my link to the outside world. I love her very much. I have no idea how I could have faced this without her, and I’m grateful that I don’t even have to waste any worry on that hypothetical.

In the meanwhile, I’ll keep doing my best to keep myself occupied. I’ll continue playing “systems nerd in the cancer ward” and learning about everything that we humans have figured out about how to keep our bodies alive when they do weird stuff like make too many cells. Maybe I’ll write more about what I learn!

Thanks to everyone for all the love and support. 💜