I’ve mentioned to a few people that my weight is plummeting (or maybe it’s just that my neck looks extra thin on Zoom), and wow—people sure have responded! Nathan calls it my Calorie Calvary, and meals and sweets have been coming from friends and family far and near. One amazing colleague drove all the way from Detroit to deliver lettuce wraps, an egg bake, cookies and chocolate cake. I’ve felt so amazingly loved and supported with every bite—even on days when it’s hard to take them.
Overall, I’m really starting to feel the cumulative impact of the past almost two years of treatment (turns out we restarted MealTrain just in time). It’s inspired me to do a lot of thinking, which is why my WIP longer update is overdue and still in draft form.
The good news is my CEA has dropped to 0.7, almost my lowest ever. Adding Vectibix to the protocol appears to be working. And, so far the dreaded Vectibix rash has not made an appearance—maybe because I’ve tried icing my face during chemo, inspired by cold cap therapy used to maintain hair, primarily leveraged by breast cancer patients. Not only am I personally thrilled, I am excited that this simple trick could make it way easier for others to tolerate a powerful drug that often must be discontinued due to severe rash complications. Nathan is talking about trying to make an affordable mask which uses a coolant to stay cold throughout the hour-long infusion. Don’t worry—he plans to make his invention open source!
I had my 28th round of chemo today—my ninth since the recurrence and my fourth with the reinstated Vectibix. I have a CT scan next week, after which we are hoping to get a better sense of what is next.
Thanks to those of you who have continued to check in with me, sending food, gifts, silly hats, love and stars. You keep my spirits high and are there for me when I’m low—I couldn’t do it without you!
