Written by Jenny Williams (aka ‘Jenguin’) – Head for the Cure Ambassador
Change of Plans
In the brain tumor community, we “Go Gray in May” for Brain Tumor Awareness Month. I personally like the hashtag #GrayMatters, because I love the play on words.
This year, I was prepared to kick off this important month with a trip to Capitol Hill, where I was joining a bunch of fellow “thrivers” to advocate for more funding to the awesome researchers working on a cure for this disease. Unfortunately, COVID-19 foiled these plans, and the event was turned into a virtual one. Forced to stay home and send an email instead, I knew it just wouldn’t have the same impact as a meeting in-person with my members of Congress. As disappointing as this was, it turned out for the better as I headed into treatment.
The clock was ticking, and Day 1 of my first chemotherapy cycle was quickly approaching. Beforehand, I headed back to the hospital to get my blood drawn and meet with the nurse. My boyfriend was not allowed in the building with me this time, so he dropped me off and I proceeded through the automatic doors of the cancer center. Getting used to the drill, I lifted my hat as I approached the temporary table in front, so the women behind it could scan my forehead and ask me a few questions before handing me a card with the word “APPROVED” and my temperature handwritten on it.
After a quick blood draw in the lab, I went upstairs where the waiting room had tape over some of the chairs to prevent people from sitting too close to one another. Thankfully, it wasn’t long until the nurse led me to a room where she would educate me on my treatment. I received a folder full of information on the chemo drugs and a calendar outlining my next couple months of pills, lab tests, and remote doctor visits.
I’ve done these drugs before. It’s a well-established chemotherapy for brain cancer, a cocktail of three drugs called PCV: Procarbazine, CCNU and Vincristine. The first two are capsule form, and the third is given over IV. Last time, Vincristine gave me peripheral neuropathy, so I stopped it and continued on the other two (PC). This time, I’m foregoing the third entirely, and sticking to the first two (which is enough).
I went home to await the delivery of these two tumor-killing toxins. Bringing the packages inside reminded me of Snow White accepting her poison apple. Cycle 1 started with my first dose of CCNU, otherwise known as Lomustine. It’s an agent so strong that I have to wait 8 weeks between doses, with constant monitoring of my blood levels.
One week later, and it was Day 8 of my first cycle. I started the day off with some labs at my local hospital. A quick call from my oncologist told me everything was normal, and I finished the night with my first dose of Procarbazine, which I reluctantly take every night for 14 days.
It’s the beginning of a long journey, during a very unique time in history. I’m actually glad they are requiring face coverings in public now; it allows me to fit in with my own protective gear.