Chemorona (When Sh*t Got Real): Part I

I'm sitting here listening to my kids chattering to one another in their shared bed through the baby monitor. I can hear my daughter say something and my son parrot it back and the both of them start laughing. Sometimes all I hear is giggling and shrieking, an interspersed cry, and muffled words in between. Slowly the chatter and laughs will wane, and hopefully they'll fall asleep without R coming up once or twice. As I listen to this, I'm thinking about how to write this post. I'm now writing about my chemo journey almost entirely in retrospect and it feels overwhelming.

Let me start by saying the idea of having to go through chemotherapy terrified me. Surgery felt tangible and familiar to me, having gone through two c-sections to deliver each of my two children. I had read online about what I would need for surgery and started buying feverishly on Amazon to prepare. Then came the change in my diagnosis from Stage I to Stage II, and the corresponding addition of chemotherapy to my treatment plan.  Chemotherapy is what you hear horror stories about. Chemotherapy alters you on every level and makes your fight with cancer visible through its trademark baldness. R now thinks that any woman or child with short hair may have cancer.

I started chemotherapy on February 10, 2020.  This past Monday, May 4th, 2020, I went for my 7th out of eight chemo treatments.  I have only ONE chemo treatment left to go!! The majority of my treatments have taken place during this pandemic, which has exacerbated the anxiety around being immunocompromised and yet somehow may lockdown easier.

My first four courses of chemotherapy consisted of Adriamycin, known as the Red Devil for its signature red color, and Cyclophosphamide. I'm going to refer to this lovely combination as A-C; my oncologist refers to them as the "bad boys" of chemotherapy. They are two of the strongest chemotherapy drugs in existence, so I was getting thrown into the fire head first. During my A-C treatment, I had to take medications to manage all of the side effects, and then additional over the counter things to try to manage the side effects of all the medications. Figuring out what worked for me took time, and each cycle brought common side effects, as well as unique ones. 

After my first dose of A-C chemo on Monday, February 10th, I was shocked at how relatively "normal" I initially felt. By Friday, I started to feel really tired and came down with some cold symptoms.  I was also achy, and by Sunday night, I started to run a fever. My doctor had told me that any fever over 100.4 required a call, and was considered urgent. As a parent with young kids, I knew the magic number of 100.4 well, it's the number at which young infants are considered to actually be running a fever. On Sunday night, I constantly monitored my temperature while I continued to feel steadily worse. At 4 a.m. my temperature spiked to 101.6 and I reluctantly called the hospital. They told me to come in right away, despite me asking if it could wait until morning. I started bawling. I called my sister, and she came and drove me into the city to the hospital while B stayed home with the kids. B made us sandwiches and snacks, and packed my water bottle

I was ultimately admitted to the hospital with neutropenia (low white blood cell count, specifically low neutrophil counts). Neutrophils are one of your body’s first lines of defense against germs. My neutrophil count was 0.0 when I was admitted. The normal range runs from 1.5 to 7.5. Having a value of 0.0 basically meant that I had absolutely no immune system at all. The hospital also tested me for a variety of different viruses, and it came back positive for a virus associated with the common cold. I was in the hospital for two additional nights until my counts rose enough that it was safe for me to go home.  I thought nothing could make me feel more aware of my new status as a highly vulnerable member of the population than being hospitalized because the combo of chemo and a common cold entirely knocked out my immune system. I was so wrong. In retrospect, when I was hospitalized in mid February, COVID was already here and spreading.

After my hospitalization, my family got more serious about going into our own form of lockdown. I basically did not go out unless I had to. (Though I did squeeze in one more Target run before shit hit the fan, because come on- who doesn’t love a good Target run to buy more than you actually need).  I pulled my son out of his "mommy and me" class, which B had been taking him to. I had really hoped to take L to his first class before chemo started, but ended up having a doctor's appointment at that time. I was heartbroken that I wasn't able to take him. R continued school, but she soon became familiar with the drill of incessant hand washing. Then COVID really hit the US and states started to go on lockdown, including our own. For me, it felt like nothing had really changed in my day to day. For B, he began to work from home. Then R's school shut down. I had already grieved not being able to go out and experienced a loss of my independence before the pandemic fully hit. But now, I am terrified that I could catch COVID-19 and die. I cannot beat cancer to catch COVID and die. I have had moments of panic. My sister now does all of our grocery shopping. prescription pick-up and any other errands; no one in my house leaves to go to any public space. The only person who leaves the house is me- to go to chemotherapy. We are privileged to have a house in the suburbs with a large yard in a quiet community. We can go out for walks and still socially distance. 

The daily planner I had bought to use for work this year has now been repurposed as a daily log of how I'm feeling on chemo. A-C made me feel like crap for the majority of the days between cycles. There were days I could do nothing more than sleep, getting up for the occasional meal, which made it hard to stay adequately hydrated.  I would get 4-5 good days, for which I was thankful, before returning to get another dose. One cycle, water tasted absolutely disgusting to me, and I had a lot of trouble staying hydrated. Cold apple juice turned out to be the answer. I again ran a low fever that cycle and some subsequent ones, which became normal for me.  However, in many ways, my first chemo cycle was my worst. On my third and fourth A-C cycle, there were days that I felt decent enough to get a workout in.  Luckily, I have not again hit the 100.4 threshold, though I have come very, very close.