The Red Devil

I went in for pre-chemo blood work the day before my first round to check my CBC's (Complete Blood Count). They track CBC's quite often during any kind of cancer treatment, specifically paying close attention to Absolute Neutrophils, Platelet counts, and Hemoglobin counts. On 9/25/24 I officially had my first round of chemo; a combo called Adriamycin & Cytoxan, aka "AC", aka "The Red Devil".

My husband accompanied me, along with my new backpack and 8,000 other things I was trying to carry. I always packed a blanket, my laptop, and a book. An infusion day requires a lot of moving parts; the medical notebook that needs to be out and handy, a coat that wouldn't fit in the backpack, the Yeti with coffee or tea, the bigazz water bottle, a salad, etc. My husband still harps on me about how much I'm constantly trying to carry...and he's not wrong. It tracks with my high strung, always "on" personality. His theory is that I would be less stressed if I didn't try to carry as much. Dude is a genius and that's one of the reasons I married him.

My infusion days always started in the waiting room, then height/weight check (shoe removal and all), exam room, secondary wait area, before finally landing in an infusion chair. Can you imagine my hot mess self carrying everything through that process EVERY INFUSION DAY?? It became an ongoing joke at the cancer center. My oncologist always commented on my food that I was usually also carrying separately. I'm sure it was a surprise to see a patient packing a healthy lunch when they offered free food there.

My medical team had already educated me on the steps that would be taken during my first 4 treatments: port access, (2) anti-nausea drugs, a steroid...then the Adriamycin would take approximately 8 minutes to inject, followed by the Cytoxan drip for another hour. Lastly, a Neulasta Onpro patch would be applied to the back of my arm to wear home.

One tip that our good friend Alex gave me was to take Claritin (loratadine) around chemo days. Alex was also going through intense treatment for a rare sarcoma around his vital organs. He was happy to be able to provide this helpful tip that he had discovered via word of mouth. My medical team actually did include it as a recommendation to help combat some of the side effects of the Neulasta, which included bone & joint pain. I took Claritin religiously a few days prior and after my each of my first 4 AC infusions. Instructions found online seem to vary on how to take the Claritin, but the way I dosed it seemed to work for me. I'll never know if it was actually helpful or not.

I met an angel in the form of a nurse on day one: Renee. She was around my age and my kind of energy. God knew what he was doing as I stepped into this space of unknowns. She provided a sense of comfort even though I was completely on edge.

I had already signed paperwork consenting to treatment, but we reviewed a few more last-minute specifics. There are a lot of new considerations while on chemo. Here are just a few:

*You can excrete chemo through bodily fluids...our baby could be exposed through as much as my kiss...talk about guilt as a mother and a wife!

*All foods must be thoroughly washed, cooked, maintained at necessary temperatures, etc. Funny that the importance of washing produce is a MUST for a chemo patient, but extremely underdiscussed for the general public. Perhaps if we were all more aware of the toxins in and on our foods, our cancer rates would be decreasing instead of rising? Anyhow, that's a point for another day. A nutritionist did stop by. I appreciated the option, but passed on the help. I'm sure this would be helpful for patients that have no concept of nutrition. The cancer center's kitchenette with chips, cookies, white bread sandwiches with processed lunch meat, etc., was not going to be my reliable source for nutrition.

*Mouth thrush and sores are extremely common while undergoing chemo. The Red Devil didn't only get its name because it's red. A dear nurse friend who works in oncology advised me to chew on ice while getting the Adriamycin infusion. I HATE ice. I'm the girl at the restaurant asking for "water, no ice, please"...but much like the Claritin trick, I never skipped this step during my AC infusions. I helped myself to the crushed ice at the cancer center's kitchenette before parking my butt in my infusion chair. It worked for the most part. I did have a cold sore breakout and maybe 1 mouth sore during my 5 months of chemo, but that was a little later on when my immune system was really in the pits.

*Other common side effects and how to cope with them. As you can imagine, this part alone is straight bonkers...from the nausea, altered taste & smell, hair loss, high risk of infection/sickness, and neuropathy, just to name a few. I mentioned before that I opted out of cold capping to combat the hair loss. There are also cryotherapy mittens and booties that can be helpful in reducing neuropathy side effects. I did not use them. I did take advantage of having 2 anti-nausea scripts at the ready.

Anyhow, we cracked some jokes, had a few good nervous laughs, and then got down to business. Perhaps it was also fun for her to have an atypical, younger, bubbly patient. Regardless, we were all set to kill some cancer cells together.

She put my orders into the pharmacy...not quite the custom order I prefer, but it certainly was the quickest. The pre-meds began; let's talk about these for a sec. Have you ever been on a Benadryl trip? Well, the cancer center is the Benny Trip hotspot! It hits in such a way that everything suddenly diverts to slow motion. Just as naptime arrives, the steroids follow with a wake up slap.

Next up was Renee gearing up in her hazmat gown--did you know that angels wore such things!? Well, they do when they don't want exposure to the Red Devil (or any other type of chemotherapy drugs). The bright yellow caution labels and PPE really amp a patient up for that first infusion. Renee sat and administered the Red Devil by hand. This drug was alarmingly red in color. Because it was my first infusion, she took her time and asked me how I was doing approximately 10 times in about 20 minutes. I chomped away on my cup of crushed ice. We were off to a good start. Cytoxan was then hung and the last hour went smoothly.

Not all insurance plans cover the Neulasta Onpro, which was applied to the back of my arm prior to discharge. The Neulasta self-administered approximately 27 hours after the infusion as protection against febrile neutropenia (fever and low white blood cells). The alternative was a return trip to the cancer center the next day for an injection of Neulasta, which was not ideal while battling next-day side effects. I thank God every day for our good health insurance. This should not be reason for extra suffering or inconvenience, but that's the reality that a lot of patients face. Picture for reference:

This whole infusion process was about 4 hours. I took it all in while I was there; the layout of the center, the boring and sterile finishes, the baskets of handmade hats, bracelets, etc. that were available to patients, all the different responsibilities of the personnel, the nurses navigating all their patients, and the loud beeping from IV pumps signifying completion. My mind wandered and worried about the other patients around me; most much older. Some had people with them, while others were alone. People were there for all kinds of reasons; immunotherapy, chemo, iron infusions, etc. In general, it was not an ideal place to be, but the employees certainly went out of their way to keep the vibes upbeat and positive.

Day 1 was altogether just A LOT. So many firsts and unknowns. I was grateful to have Ryan with me; I needed his support and it was good that I had another set of ears for all the info that was being thrown at me. Kanon stayed with my in-laws for a few nights, which was perfect because the poison eventually caught up to me...just not until after we left the cancer center and went out to eat! It was definitely a "treat yo-self" kind of moment. That flatbread pizza was delicious...and would be one of the last meals I would eat for a few days...

8pm-that's when it all hit me like a MAC truck. I don't think I have ever felt worse in my entire life. The intense nausea I had after my double mastectomy was nothing compared to what my body experienced after chemo was introduced to it. I'll never forget that night. Nothing helped...7 straight hours of misery where I wanted to crawl out of my own body. I finally fell asleep around 3am, and the following day wasn't much better. I kept popping Compazine and trying to stay hydrated. My mom took me to the Cancer Wellness Center the day after my first infusion to pick out a wig. This was a scheduled appointment that had been booked far in advance. I wasn't missing it even though I was holding on by a thread. I looked RED in appearance and really had to push myself to stay upright while trying on about 15 wigs. I left with two wigs that day. Ryan named them "Wallstreet" and "Sci-Fi". These would be 2 of the eventual 4, and I fully embraced the opportunity to have fun fake hair.

Friday followed with straight exhaustion, no appetite, and a yeast infection. I was able to get something for that before the weekend, thank God. On Saturday I could start see the light again. Sunday was my best day. My bowels took the hit on the following Tuesday. A real treat, chemo. A real treat you are!

I proceeded to go work in the following days until I couldn't keep my eyes open anymore. Then I'd retreat home to rest. I went to the gym when my body told me it was capable, and most importantly, I was able to be Kanon's mama without him even knowing I was sick. Having to explain any of this to a child would be so, so difficult, but I know there are support systems in place to guide those who are in that position.

I went back in for bloodwork 1 week after my first infusion to make sure my counts were okay. I then had 7 more days before doing it all again.