One thing I didn’t expect to see in this iteration of The Guys in the White Van was the loss of my hair. Yes, I was told my hair could “thin,” and to prepare for it I cut my hair for donation. However, I still had a cute cut! My wavy auburn hair supported the A-line I created for myself with my cut. My beauty school training and years of doing hair let me make the most of what I had–after all, my hair has been “thinning” from the cancer for a while.
However, this morning was different. This morning things got real. As I was washing my hair, I noticed more hair in my hands than usual. Then I noticed I have what seems like a bunch of breakage in my crown. Then, I looked down, and noticed the hair that was on my head went from my hands to the drain, off on an Atlantic Ocean adventure, greater than I will ever see.
“But, you cover your hair! You post picture of amazing wraps! Why do you care about your hair going down the drain if no one sees it?!”
Good questions, if uninformed. Yes, 👳🏾 I do wrap my hair, and I do take great joy in it. The same joy I took in doing hair, both mine and others. Now, even though YOU don’t see my hair, people very important to me DO. My husband sees my hair. My son sees my hair. But most importantly, I see my hair. My hair, still firmly in my head, helped me get through my bout with breast cancer. My thinking was, “how bad can it be? I still have my hair.”
And that was then. My breast cancer was a walk in the park compared to my fight against Mycosis Fungoides. All I really had to do was pop off the bad sweater puppets, pop on some new ones, and be on my way! That was five years ago today. Mycosis Fungoides doesn’t play that way. I can’t pop off my skin. I can’t pop out my blood. I could get a stem cell transplant, but I am years from that. Instead, we are first trying oral chemo, and I’m sorry, it hates hair.
My first two weeks on Targretin, my oral chemo (and a vitamin A derivative), were fairly begnin. I figured out that I had to sit right after taking the medication, and besides from some dizziness and nausea, had no truly horrible side effects. But I was on a baby dose. That all changed when we doubled down, going from 2 to 4 pills a day. It makes my anxiety worse, gives me brain fog, drops my thyroid so I have to take meds for that, then raises my triglycerides so I have to take meds for that! Thank Gd I have my health, huh? It also is making my hair fall out in clumps.
I’m told I will “get used” to this medication, and that my thyroid being low is what is making me feel crazy, not the chemo, which really doesn’t make me feel better. The last two years I had been avoiding doctors, and now I have to see two of them at least every other week.
Yes, it is a blessing that we live in a time where my incurable cancer can be treated. Yes, I’m blessed to have a husband whose employer offers insurance that pays for my meds. Yes, I am lucky, I suppose, that I’m taking oral chemo. However, I’m seeing no blessing from The Guys in the White Van. They are taking my hair!
If I had to do it all again, someone recently asked me, wouldn’t I keep all my joys and all my struggles? The joys, most definitely. However, I do not see the joy in cancer. Lessons can be learned without the help of a potentially fatal illness. I was an excellent student. I’m ready for a test that I can study for. Leave the hair alone.