For nearly two weeks now I’ve been waking up with mouthfuls of hair being inhaled throughout the night from the pile of brown curly strands that’s been decorating my pillow.
The day after my most recent SGN-35 treatment I felt it happening; I could literally feel my hair follicles letting go and dying off. My scalp very suddenly burned, tingled and became itchy, and when I reached up to soothe it, my fingers returned wrapped in dark strands of hair.
Watching this process slowly happen has been defeating and quite frankly, a little devastating. I never expected to lose my hair with this drug as it is supposed to be so targeted toward the CD30 markers that reside in the Hodgkin lymphoma cells that it wouldn’t have the capacity to bother with fast-growing hair cells.
After five days of covering my pillow with it, finding it stuck to my clothes, my face, my neck, and filling my fingers with fistfuls any time I ran my hands not even through it, but just over it, I decided to give my Sloan team a call. I thought that maybe it was a worrisome sign of Graft vs. Host Disease manifesting in a strange way. But no, I’m told that in fact 13-14 percent of patients experience hair loss during treatment with SGN-35/Brentuximab Vendotin/Adcetris – whatever you want to call it. Once again, I am in the small minority.
I am holding onto these crazy curls as much as I can. If there was a way to keep them vacuumed on by willing them in from the inside, I’m working to do it. I’ve lost and re-grown my head of hair completely at least three times now. This most recent set of dark brown curls stretching to almost three inches is the result of one year’s cultivation. To see it fall out now is hard to bear.
What is keeping me hopeful that enough will hang on to maintain the look of a reasonably “normal” head of hair is that it seems to be “thinning” vs. “falling out.” When I’ve expectedly lost my hair after very intense chemotherapy it has fallen out in massive chunks over the course of just a couple of days. In those cases, I’d run my hands through it and a whole section would fall out leaving me with a bald spot until I’d decide to have Craig buzz it all off with clippers, not able to handle watching the fast progression to bald-headedness.
This time around, somehow even after so much seems to come out, there is still hair that remains. If I run my hands through any particular section, 20 strands might leave with my fingers while 30 stay in tact. My hair certainly looks thinner and there are areas that my scalp shines brightly through, but my hair is long enough and thankfully still just thick enough to cover those spots. Wearing the head wraps that I’ve been since sprouting these curls is a huge help because it covers up the particularly thin front and allows me to pouf out the back in all of its afro loveliness.
I am afraid that if I have to endure more treatments with this drug that my hair follicles won’t be able to sustain. I’ve cried a few times at the thought of losing these beautiful curls I’ve worked so hard for and having to once again face myself in the mirror – the reflection of an obvious cancer patient. There is no hiding from baldness. It may sound shallow and trite after all that I’ve been through and in comparison to the losses that others endure, but my hair represents a lot more than outside beauty. In a way, it represents the picture of health or sickness.
What I keep telling myself is that this drug is killing off my hair follicles because it has nothing else to go after. There is no cancer inside of me. The targeted chemo needs something to do, and hair is its chosen victim. I hope to learn this is the reality when I get my PET Scan results next week. That will make the clogged shower drain and scalp tingling worth it ten-fold.
In the meantime, please avoid petting my head or giving me a noogie or we might both be in for a hairy surprise.