how the hell did I get here?
** Originally posted on 22 October 2022 **
Today is day number 281 since my stem cell transplant in January of this year. It’s a number I could tell you on any given day. It’s a number that comes up at most of my oncology appointments. I’ve been tied to this number for a long time. And I’ve been invested in the numbers of my cancer friends as well.
But it’s not the only number. And it’s not the whole story. Before transplant, there were so many other days. In fact there have been 446 days since I was diagnosed. But how did I get there? How did my world just change in a hot minute? Well, cozy up and settle in. It’s story time.
It was early-mid July 2021. I was still working remotely from home with my partner and my adorable house panther, trying to live my best life. One day I noticed my lymph nodes were starting to swell. I figured it might be a reaction to the COVID vaccine, since it had happened previously, and set up a time with my primary care doctor. We did all the usual stuff, though nothing worked.
My next step was to get my first COVID PCR test, which ended up negative. Right around the same time, my gums had also started to really swell and almost detach some. I had difficulty talking and felt pretty blah. At this point, I was planning on going in for a blood test, but also scheduled a dental exam where showed nothing from a dental perspective.
Later that day I had a virtual workout with my gym, and for the first time ever, I had to stop about 15 minutes in because my HR was so high I couldn’t catch my breath. And the next morning, I woke up with throat/swallowing issues. And so my partner and I packed up, and headed to the ER.
It didn’t take them long to give me a preliminary guess that it was likely leukemia. And here I was, initially panicked that it was something super weird that was going to make all my teeth fall out. But it was so much worse. After spending most of the day there, I was transferred to the main campus hospital’s oncology floor. I would remain there for over a month.
It took me forever to be able to say out loud that I had cancer. And the first few weeks are a total blur. It took a few days for my official diagnosis to come back: acute myeloid leukemia (AML) paired with a few nasty genetic mutations. AML was detected in a pretty high percentage of my bone marrow. Before I could even process it all, I began a very aggressive chemotherapy treatment called G-CLAM. And by the time my birthday rolled around later that month, my hair was gone. And by the time I left the hospital, I was so lethargic, that I came home with a walker.
Another round of aggressive chemotherapy in the hospital, G-CLA, followed. And so did the massive headaches, which turned out to be an indicator that there was leukemia in my central nervous system (CNS). The goal since the beginning of my diagnosis was to get me to transplant, which required a clear CNS. This started my journey with craniospinal radiation in the fall of 2021. I had 13 session that lasted about an hour each. During these sessions, I was bolted to a table with my head and bust in an extremely claustrophobic mask. Just as my hair was starting to come back, it fell right back out. Fortunately I was able to do these sessions as an outpatient. I cannot tell you how much being at home helps the healing process.
In December of 2021, I started the prep work for my stem cell transplant. This required a lot of tests to make sure I was ready. I had dentist visits, EKGs, ultrasounds, pulmonary function tests, even more MRIs and bone marrow biopsies, a mammogram, and so much more. My caretakers and I had to also take classes so we understood how serious of an undertaking it was. And in January 2022, I was admitted to the hospital again to begin another round of aggressive chemotherapy followed by my stem cell transplant. I was fortunate to have a full-match sibling donor.
The conditioning chemo for my transplant was super rough. I ended up on IV nutrition due to not being able to swallow all that well, and many of my meds were given via IV. I was able to go home after a few weeks and begin the recovery process. However, my leukemia was very stubborn and strong, and even after my successful stem cell transplant, I needed 5 rounds of low-dose chemo, oral chemo pills to keep one of my mutations away, and a donor lymphocyte infusion. All these were done as outpatient.
And this is just the major stuff. It doesn’t count the times I was admitted for a neutropenic fever. Or the port that is permanently installed in my chest. Or the transfusions I’ve needed. Or some of the other terrible reactions I’ve had to treatment. Or the other permanent damage to my body.
And that pretty much brings me to today. My hair is starting to grow back, but is in an awkward growth phase that annoys me. I’m off most of my medications except one. I’m still extremely tired and lose focus easily. I’m unable to work at the moment. And I have lost all my vaccinations due to treatment. Imagine an adult with the immunity of a literal newborn. That’s me.
But slowly things improve My energy levels are higher some days than others. I don’t have to go to the clinic as often. I’ve started being able to slowly work out again. And I have enough energy to write this blog post. I may still space out to TV more than I’d like, but I’m here.
Life is so much different now. I’m forever changed. My partner is forever changed. Close family and friends are forever changed. Hopefully I can use my experiences to help other survivors, caregivers, and anyone else that would like to walk a mile in our shoes to gain some understanding of what it’s truly like to live with cancer.
