Shedding
CW: this one may be disturbing or gross in a moderate body-horror kind of way, judging by a few initial reactions.
Hi friends.
It's been an interesting couple of weeks. After my last letter I thought I was largely in the clear for side effects, and indeed mostly I have felt well for the past two weeks, with the exception of a pinched nerve around my coccyx, which was a real pain in the butt, but probably not actually chemo-related, and then a possible UTI (blood work/cultures + chest x-ray + urine test + antibiotics even though it was probably just bladder irritation) and then a recurring body ache plus enough fever that meant I spent a few hours at the ER (more blood work/cultures + chest x-ray + IV drip) before they told me it was probably not infection and I was allowed to go home and medicate it away.*
All of that was unpleasant but each item resolved in fairly short order, so I kinda feel like it was not too terrible overall.
Right on schedule last weekend, I started shedding hair. At first it was relatively easy to brush off, but it's gotten progressively heavier every day this week, and with that has come a lot of weird feelings.
I haven't found a central reference point for these things, but I'm harboring the impression that there is a suite of normal human instinctive grooming behaviors that sometimes runs to the disordered end of the spectrum where you get trichotillomania and excoriation disorder (warning, graphic imagery and text) -- I suspect these may also overlap with the concept of stress displacement behaviors. These behaviors seem to be linked to anxiety relief and/or positive reward from engaging in (presumably sometimes advantageous) grooming activities like scratching, skin picking, hair pulling, fingernail chewing, etc. I do not consider myself to have an actual disorder of this type, but I suspect we probably all may experience some underlying satisfaction in certain grooming activities and... well.
I guess what I'm noticing is a difference between fearing the outcome of hair loss and the real-time experience of hair loss. It's triggering contradictory impulses. Many of which also clash with the advice if you're trying to keep your hair -- yes, you're supposed to comb out loose hairs (gently) and treat your scalp with a lot of care, but also avoid things that will pull on the hair. But pulling is inevitable. And my scalp itches. So now there's blue hair everywhere, which I desperately want to cleanse. From the source.
I've started collecting it in a bag -- after all, why not? Why shouldn't I keep it?**
Luke has named it "Forbidden cotton candy."
As I've been shedding more and more hair I'm also growing increasingly pessimistic about my chances of retaining much or any through to the end of this, which means it's probably time to bite the bullet and get some head coverings. So now I'm shopping -- reluctantly -- for chemo caps. I currently detest all of them.
Upcoming Monday is the start of round #2, so we'll see if things repeat, worsen, or switch it up. Wish me luck!
Love,
Rosemary Babies
*I am running through quite a lot of tylenol these days, which I suspect my liver does not appreciate. But they are keeping eyes on my liver stats and as long as nobody tells me the blood work is alarming, I think I am willing to trade some amount of liver for a reduction in quantity or quality of headaches.
**
Well... I guess one reason would be so as to avoid fixating on how much hair has come out, but that ship has thoroughly sailed, and anyway how else am I supposed to make myself a hair shirt?