Journal entry by Maya Tobi —
Today I had my first infusion of Dose-Dense AC chemo, aka “The Red Devil,” or “Doxorubicin + Cyclophosphamide.” The infusion itself was fine—they loaded me up with pre-meds to keep my nausea in check for a few days, so I am very much not looking forward to those wearing off. This chemo regimen will involve 4 infusions done 3 weeks apart, so that I can feel like utter horseshit for 2 weeks, have one week of recovery, and then go right back to chemo. Apparently about 80% of patients experience nausea and vomiting on Dose-Dense AC, which is definitely higher than I was expecting. Maybe I’ll get lucky and be part of the 20%, right? Sigh.
Another fun fact about Dose-Dense AC is that it has a lifetime cap of 6 infusions, because any more would be too toxic and have the potential for serious complications. Even more fun is that it dramatically reduces white blood cell counts during active treatment, meaning getting sick is very dangerous. So I will be masking for the foreseeable future, will need to be extremely careful in public and with socialization, and any fevers of over 100.4 will require an immediate hospital visit for IV treatment.
They also stuck this totally wild contraption on my arm that’s rigged to give me an injection about 26–28 hours after placement. It’s called Neulasta, and it’s used to stimulate white blood cell production, with the unfortunate side effect of severe bone pain. So I’m not looking forward to that.
The tiny bit of hair that I’ve started to regain in my 3 week vacation from chemo is also going to fall right back out. Yay. Maybe if I’m lucky, I’ll have eyelashes again someday.
All in all, I am feeling very down about everything. It was really nice to get to see Adam get married via video call, but I wish I’d been able to be there. And I wish we’d been able to visit Sheridan’s family, especially with his birthday coming up on Monday. I feel really bad that he’s likely going to be spending his birthday taking care of me as the chemo side effects start kicking in. I wish I’d been able to go to the Sheep Shearing Festival in Waltham last weekend, but the edema and weakness I’ve been experiencing prevented that from happening. I’m really bummed about all the things I keep missing out on because of this stupid cancer. I’m still upset that I missed the fiber coven Airbnb retreat with Brit before she moved away due to Covid, and that was like 2 months ago now.
And now I have to keep missing out on more things while I live in as much of a bubble as I possibly can for 3 months, whilst enduring repeated bouts of extreme nausea and bone pain and exhaustion and all the other crappy side effects. I’m so tired of it all. I just want to curl up and cry, but I have this weird asinine fear that crying is going to trigger nausea, so I keep holding it in. Cancer is exhausting in so many different ways.
So yeah. That’s my update. I am feeling utterly beaten down and exhausted and sick of missing out on all the things I’ve been trying to look forward to. Cancer just takes and takes and takes and takes. I’m so tired.
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