So, now that the tests had been done and the second opinion obtained, it was time to start the part I dreaded the most – chemotherapy. In particular, my chemo regimen would include four rounds of Adriamycin and Cytoxan on a “dose dense” schedule, once every two weeks. We agreed to do that on Thursday so that I could take off Fridays and hopefully feel well enough to be back at work by Monday. After that, I’d have 12 rounds of Taxol, which Dr. J said should be easier. I would have those every week. We ultimately decided to do the taxol rounds on Friday since I shouldn’t need the extra day off and by then, I was feeling like I was gone from the office more than I wanted to be and my cases were starting to suffer.
I was terrified of chemo. Surgery? No big deal, I’ve had lots of surgeries. But chemo brought to mind (in addition to the baldness) images of people who felt terrible, who were sick and vomiting all the time, who had fevers, were in and out of the hospital – it sounded awful. The “chemo class” they made me go to didn’t help as they talked about all the worst side effects we might expect. Everyone’s different, and there are lots of different chemo cocktails, so the class kind of had to cover everything I guess. They also wanted me to fill out a form on my wishes in end of life scenarios, which I firmly declined to do. (The teacher of the class also told us it was “interesting” that she had started out teaching classes for new parents-to-be in the birthing center, and now she had kind of come “full circle” by leading these chemo classes. Not super reassuring – were they planning to kill us?)
Luckily Tony and I had theater tickets the night before the first infusion, and I took a valium to try to get some sleep. I had already had a port placed near my clavicle about a week earlier to make it easier for them to access my veins. When you go in for chemo, first they send you to the lab to have blood drawn to check your levels and make sure you’re healthy enough to actually get chemo (basically you have to be in good enough shape to get beat up again). Then you (usually) see the doctor or PA who reviews the results with you, then you actually go back to the chemo suite where they assign you a nurse and get you all set up. First you get premeds – anti-nausea stuff, steroids, and Ativan, and with the Taxol they also add Benadryl because it has a high rate of allergic reactions. Then they actually start the chemo part. The Adriamycin was the worst because it’s really heavy and they have to push it in through two syringes. The Cytoxan and Taxol are both dripped through a regular IV bag.
Apparently some people sleep through chemo. For me, the steroids kept me too wired and the Ativan didn’t really effect me that much. Even with the addition of Benadryl, I never fall asleep until we’re home after. The truth is that chemo itself isn’t so bad – I can’t really feel it except for when they have to fuss around with the needle too much trying to hit the port. I chewed ice during the Adriamycin to help prevent mouth sores upon their suggestion. Honestly, they have so many medicines now to help with side effects that it is for the most part very well controlled. In fact Dr. J told me that most of her patients gain 10-15 pounds during chemo – I’ve avoided gaining any more so far, but I’m still 10 pounds above my pre-surgery weight. The steroids make you hungry and the nausea means you eat a lot of carbs. I’m okay with maintaining for right now, but I’m working pretty hard to do that.
As I mentioned, the first part of the regimen (the A/C) was said to be tougher for most people, and so far that’s true for me (although I am only through 2 of the 12 taxol, and they’re cumulative, so we’ll see.). Still, even on the A/C I was able to control the nausea pretty well and was even able to run through most of it. I did develop a fever after the last A/C and missed three days of work and a week of running. Tony and I decided on a quick trip to hill country (Wimberley) to celebrate making it through the first section, which was a great break and gave me the energy to face 12 more sessions when we got back (the sheer number of these is still daunting).
My biggest side effects from chemo so far have been nausea (but very little actual vomiting), fatigue (which is tough because the steroids make it hard to sleep), night sweats (terrible), and a sore spot on my tongue like I burned it on something, which comes and goes. I drink way more than a gallon of water a day, which I think helps a lot, as well as exercising as much as I’ve been able to. No mouth sores, no major stomach issues, no low blood counts delaying anything, no infections. I do have some brain fog/chemo brain – writing doesn’t come as easily and quickly as it always has, which is frustrating, and sometimes I can’t think of a word (usually it’s more a loss of a phrase like “she has an ax to grind” or “don’t cut off your nose to spite your face.” Maybe I should just quit saying stuff like that.)
As part of the initial talk about chemo, Dr. J mentioned that there was a sort-of new thing called cold capping that could prevent hair loss from chemo. But, she said, it wouldn’t work for the chemo she was recommending for me because it included the “tiger blood” Adriamycin, which was too hard on the hair follicles. As most of you know, we did end up doing cold capping to try to keep my hair, but that deserves a post of its own – after which I hope to be able to post here in real time rather than about things that happened months ago! So next up is cold capping – what and why and how?