Chemo is cumulative. The most apparent indication of the accumulation is hair loss, which starts between infusions 2 and 3. For people who cannot or do not use cold capping (it's an extra cost, and insurance is very, very difficult about it - inexplicably in comparison to the total costs of cancer treatment). Fatigue accumulates because the chemo attacks your body systemically - which is good because that's how it finds roaming cancer cells and destroys them - but that impacts you with potential anemia. Immunotherapy can affect your thyroid, making you even more tired. So it accumulates. But until my first infusion, I had no idea what to expect. Hollywood, books, and personal history combined to make me very concerned about what would happen if I exposed my body to this helpful poison.
I was scared. Anxious. Nervous. I didn't feel like a warrior or fighter. I felt resigned. I have to do this, and I have to endure what comes with it. And I can make the best of it. The waiting makes me more anxious. There's nothing I can do to make the wheels of my healthcare party van spin faster.
Even after I was called back to the treatment area, there was much waiting (as I've mentioned). The pre-treatments are infused relatively slowly, and some are immediately detectable. Cinvanti has a rubber taste - not that I taste rubber frequently, but I'm sure I've held something rubber in my mouth throughout my life because that taste was familiar for the 5-10 seconds it lasted. I got Pepcid to head off indigestion. I received a steroid to buck up my immune system. Benadryl became my best friend because I was sleepy within five minutes of that drug being infused.
Getting me into the Dignicap became comical. I'm not vain (ask anyone who's observed my fashion choices). Any vanity I might have had was quickly set aside as I watched that almost everyone in the infusion center was optimizing for comfort, not style.
There are three Dignicap seats in UCSF's three Dignicap-enabled infusion centers. After ensuring that the cap connects and cools with the machine, the Medical Assistant has to wet your scalp entirely. My mother and I were in a corner of the infusion center, and the MA walked over with a stool and a spray bottle, saying it's time to wet your hair. One of the things about me is that I have a massive amount of hair. It's dense and dries quickly. My hair stylist has been cutting and styling my hair for 15 or more years and, every time, comments on how much hair I have to work with. Before starting treatment, I asked a friend who is a talented professional photographer if he would photograph my hair. I really wanted Dignicap to work.
I looked at the spray bottle and the Medical Assistant and replied - with my hair, you're going to need a bucket.
I became a two-person hair-dampening patient for the rest of my infusions. A chemo glam squad! I was a fashion plate with my Dignicap (that's not me - that's a photo from the Dignicap website).
Once dampened, the cold cap is tightly affixed to my head and, using velcro (on top, not touching me or my hair), is tightened up. Now I have a pretty cool, branching IV coming out of my port AND two large tubes coming out of the back of my head. I belong in a science fiction movie! Moving around is complicated, and I'll only do it to use the bathroom. I can only be disconnected from the Dignicap machine for seven minutes; otherwise, my head might start to defrost. I wouldn't say I liked how it looked, and I didn't post selfies on social media. I also was worried about getting a terrible headache from brain freeze - but somehow kept forgetting to take Ibuprofen before I got to the hospital. I'm unsure if it was chemo-brain spacey or some passive-aggressive resistance to this experience. In any case, the infusion nurses could get the nurse practitioner to prescribe a dose of Ibuprofen.
The Benadryl and warm blankets assured me I would settle into a comfortable, dreamless nap. Sadie had recommended I get an extra liter of hydration during chemo as it would flush my system and make me more comfortable, and it was a generally good idea. Dr. Chien ordered the extra hydration. That guaranteed I would do the Dignicap disconnect sprint once or twice during my infusion.
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