Chemotherapy Chronicles: Misinterpreting the Signs

The signs had been there for several months, but I didn’t see them. Rather, I did see them in plain sight, but completely misinterpreted them until moving to California.

Months ago, in early summer, there was a rare cicada phenomenon in the Washington, DC area. After the cicadas came and went, many people in Arlington got what were called ‘mite bites’ - mosquito or welt-like bites that were super itchy and lasted for about two weeks. I believe that was in June and July. They came and went. Only over the next few months, I seemed to get those bites again - and oddly, in the exact same places on my arms and legs. I remember telling family and friends that I kept getting those mite bites, or that I must still be getting the summer mosquito bites much more than others. I got a few puzzled nods and that was about it. I also didn’t think much more of it, other than wondering why I kept getting these itchy bites.

Fast forward to mid-November (two weeks ago). I started my fifth round of monthly chemotherapy one weekday evening and went to bed soon after taking the pills. A few hours later I woke up, and after turning on a light, saw red blotchy spots in the SAME places as the previous months. “This is funny,” I remember thinking. “There are no mosquitos and there certainly aren’t mites in the new neighborhood.” I thought to take photos and send them to my neuro-oncologist. She informed me that as it turns out, I’m among the small minority of individuals who over time develop an allergic reaction to this particular chemotherapy drug. Until that call with my doctor, I didn’t even know that was possible. So much for my mite theory! I had to stop taking the drug for the November cycle, and upon my doctor's recommendation scheduled an appointment with my hospital’s allergy clinic.

This past week, I sat in the allergy clinic for seven hours while my medical team administered ‘micro-doses’ of the chemo drug every 45 minutes. The goal of this approach was to help my body to build a tolerance to continue the drug for this cycle. I’d never heard of micro-dosing chemotherapy. After the seven hours, everything seemed fine - no reaction, no rash. My sister kindly picked me up and drove me home. We did have a lovely bonus of stopping at the Golden Gate Bridge outlook point, a spot I absolutely cherish! Upon return home, I nonchalantly pulled up my sweatshirt sleeves, and lo and behold, there were the splotches. The micro-dosing approach still yielded a rash. A rash that even with ointments and pills to treat it, feels at its peak like dozens of ants having a party on my arms.

What ensued over the next few days was some pretty amazing help from the medical staff at UCSF via frequent consultations and calls, as well as additional medication to treat the reaction. With this help, I was able to complete this month’s round of chemo. Next month, I’ll have to go through the desensitization process again on day one of the cycle to prepare for days 2-5. And likely every other cycle moving forward as well. Now I know, and am prepared.

What I’m finding out about chemotherapy and this whole cancer thing is that there are a number of side effects that many people experience (including me), and then there are surprises that you can’t possibly plan for or anticipate. You just have to work through these moments and hope that what you’ve learned from them can help you to move forward. And know that it’s OK to get sad or frustrated in the process. And that long naps are completely OK too, as well as leaning on family and friends for support.

Why did I decide to share this post? We all have health concerns - whether today or years from now. For fellow individuals affected by cancer, if something seems a little off, pay attention. I decided this time to immediately report to my care staff and document the signs. Something that might seem insignificant can actually have very real consequences. Luckily in my case, we caught and are working to correct this particular situation. I’m so grateful it didn’t happen in the middle of any of the upcoming holidays, and that I was able to make it through the week...even feeling good enough to take a yoga class and enjoy a walk this morning.

That's all from me on this topic today. My cancer doesn't go away, but I do focus my attention on many other areas of life as well. And so my next post will likely be a report on vegan pumpkin pie or something of the like!

November 20, 2021

Photo: Sunrise over Marina Bay, November 19, 2021