It would be a really bad time for me to commit a crime right around now. I leave a trail of DNA everywhere I go, not unlike the witch in the Bugs Bunny episodes does with bobby pins. Whatever I did, I wouldn’t get away with it. The DNA is my hair. Despite all my big talk and vigilance about not choosing drugs that would make my hair fall out, my hair is falling out. First in strands, now in handfuls. As far as what cancer treatment can bring, this is my nightmare returning to life. With a nod to my cancer warrior compadres fighting the fight and courageously sporting a free scalp, I don’t want to look like you. I’m fairly certain you don’t want to look like you (as far as the lack of hair goes), but for many drugs, hair loss comes with the territory. To me, it’s a terrible, cruel component. To me, the lack of hair tells people you’re sick. I’ve fought that label with pretty good success for more than four years now, but now, if it continues to go at the rate it’s going, my hair will give me away.
Nothing anyone can say or do will make me feel better about this. Or worse for that matter. Still, I ask you not to minimize my horror. It IS that bad. You probably DON’T know how I feel. I KNOW it’s going to grow back. There is always the chance that the shedding will slow and stop on its own, like it did when I was on the PHA trial for 2 1/2 years, taking a drug for which hair loss was not a listed side effect. Or when I was on the low-dose carboplatin chemo and radiation in 2013 and was promised that my hair would stay right where it was supposed to be. Lies. Turns out that every time you get chemo, your tissue is damaged and never quite gets back to full-strength. So hair loss for me from now on is pretty much a given. Again, it’s the cruelest strike for me, prompting a cartoon curse storm @#)(%&#)(@Q&W!!!!!
In 2001, I was on Adriamycin and Cytoxin, for months. At either 11 or 16 days after the first dose, my hair started falling out. I was prepared for that; I knew it was most likely all going to go. So, we shaved it all down to about a quarter inch. It was how I grabbed a bit of control over what I couldn’t control. For me, 16 years ago, it was my way of not being a cancer victim. I was in TV then, so it was months of wearing wigs on the air and around town. I’m not going to do that this time. Depending on how much hair goes, I may have Jessie shear a lot more off, but no fake hair this time. This time around, I’ll try to show strength not by trying to control or direct how my hair will go, but (hopefully) with a bit more acceptance (and resignation) and peace (eventually, but absolutely not yet. I’m still pissed).
Meanwhile, I am through one cycle of the CRLX101 trial. My WBCs and RBCs and platelets and everything else that’s measured are doing ok, which is shocking. I have to say, that blood transfusion I got a few weeks ago when my reds were low was amazing. I woke up the next morning feeling FINE for the first time in about four years. It was a bit creepy: Whose blood was it anyway? But in the end, I didn’t care. I get it now, Dracula.
I also spent Christmas in Maryland with my family for the first time in decades (although Jennifer says there was a random Christmas visit in the last few years: I don’t remember it. All five of my amazing nieces and nephews were home, and it was an indescribably special holiday full of food and cookies and gifts and cookies and yoga and cookies.
And now it’s 2018, a new year. Truthfully, on New Year’s Eve, I ate pasta at home, watched the new “Kingsmen” movie which ended at 8:07, and was in bed by 8:17. This morning, before dawn, I was at yoga. Melissa talked about setting an intention, not necessarily for the year, but for now. It was a good reminder to think about the bigger picture, something beyond my scalp. I stopped making resolutions for the new year years ago, instead choosing to set goals and life direction AND intention on a daily basis (that I can more easily remember). For now. So my intention, for now, is to make relentless forward progress (thanks, Jeremy). I am angry and distressed and disappointed about my hair, but there’s no fight there. What am I going to fight? All I can do is react this time. Like a smart therapist friend told me years ago, it’s time to feel it, acknowledge it, and let it go (not my hair, hopefully). It’s three weeks until I find out if this science experiment is making any difference at all. If yes, we stay the course. If no, I will tack and plot a new course (that no one has ever taken before). Stay tuned. #Defy.