How I dealt with permanent hair loss and other side effects
Constance Porter, Ph.D.
When I first lost my hair due to breast cancer treatment, I often heard people say, “Don’t worry. It’s only hair.” The implication was that it would grow back — eventually. But after a while, I began to notice that it was always the people with a full head of hair who said it. And I am one of the very small percentage of women whose hair didn’t grow back after chemotherapy. So, I am still bald to this day.
It doesn’t feel like “just hair” when you’re the only one who doesn’t have any — especially when you’re a woman, and you realize that yours is probably never going to grow back. But I’m OK with being bald now, three years after my breast cancer diagnosis. Because I am cancer-free, too, and that matters far more to me than having hair.
Most unexpected treatment side effect: permanent hair loss
At first, I couldn’t believe I had to give up both my right breast and my hair to be free of cancer. Because here I was, thinking at least I was going to get my hair back, and it turns out the regrowth I’d experienced after treatment was only due to the steroids I’d been taking. It was totally temporary.
I sat in my dermatologist’s office and cried when she told me.
It turns out I’d developed alopecia areata, a condition that makes hair fall out in patches. It can be caused by chemotherapy, but it’s usually reversible. I’ve tried a few things since then to get my hair to grow back, but nothing’s really worked. So, I’ve accepted the fact that I’m probably always going to be bald.
My worst side effect: nausea and vomiting
Permanent hair loss was obviously the most unexpected side effect of my breast cancer treatment. But the worst side effect I experienced was probably nausea and vomiting. Mine was so severe that I had to be hospitalized twice, just to be rehydrated.
The first round of chemotherapy containing doxorubicin, or “the red devil,” hit me really hard. The second round was even worse. I couldn’t keep food or water down, so I had to go to the MD Anderson Emergency Center.
You’d think that in light of that, I would run from the place today, instead of returning to MD Anderson regularly as a volunteer. But if I avoided every building where I’d ever felt bad, I’d have to sell my house. Because I was godawful sick in my home, and MD Anderson fixed me up.
Most pleasant surprise: acupuncture resolved my neuropathy
Another temporary side effect I experienced was neuropathy. For me, that meant pain in the tips of my fingers and toes.
I teach for a living, so I’ve got to be able to use my fingers to type, and I’ve got to be able to stand on my feet for three to five hours in a row to lecture. I simply cannot function professionally otherwise, so I was willing to do whatever it took to fix it.
I ended up going with acupuncture, through MD Anderson’sIntegrative Medicine Center. Looking back, it’s kind of funny, because if you’d told me 10 years ago that one day I’d think letting people stick needles all over my body was good idea, I’d have said you were crazy.
But you change your mind about a lot of things when you have cancer. And sometimes, you’ll do anything to stop the pain and suffering.
I did acupuncture twice a week for six weeks. And the neuropathy not only got better — it went away completely. The trick was that we caught it early, when it was still mild. My acupuncturist said if I’d waited until it was more severe, I might have still had some residual pain. But I believe in making the right decision quickly. So, I jumped on it. And it worked for me.
The side effect I avoided and what I still deal with today
One side effect I managed to avoid completely was mouth sores. I’d heard about the horrors of those, so I rinsed my mouth out with a mixture of baking soda and water multiple times a day during chemotherapy. I still have boxes of baking soda left over. I use it to clean my house now.
The only side effects I still deal with today are joint pain from anastrozole, a type of hormone therapy, and sometimes leg cramps. But I made it through the roughest parts of my treatment, so I’m not worried about those.
My doctor told me recently that my follicles are still alive, so theoretically, they could still grow hair again someday. If they ever do, it’s going to have to happen spontaneously, because I’m done trying to force it. In the meantime, no wigs for me. I rock it bald.