Well, in the many months since I last wrote, everyday has been a bad hair day! Literally. After a year and a half of waiting, willing my hair to grow back more fully and using Rogaine (for men no less - doctors orders), I finally started to dig deeper into the literature. I found two pieces on the web that pointed to the reality of my situation. One was an academic article: Permanent chemotherapy-induced alopecia: case report and review of the literature by Drs. B Tallon, E Blanchard, and LJ Goldberg, published in the Journal of the American Academy of Dermatology in August 2010. They focused on one 70-something patient who had come to their attention when her hair failed to grow back completely after chemo. It seemed that in their experience this was a fairly exceptional case. I felt as though I was the second person ever to have this result.
Then, after looking for more information about alopecia in general, I stumbled upon a press release on a web site called A Head of Our Time. Apparently I am not the second person ever to permanently lose her hair from chemotherapy. According to the press release, I am among the 3% of Taxotere patients who end up with permanent chemo-induced alopecia. Lucky me! Not one person - doctor or nurse, nor one piece of literature I was given or sought about breast cancer treatment even remotely suggested that permanent hair loss was a possibility.
To quote from A Head of Our Time's October 2010 press release:
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"Even though Sanofi-Aventis, manufacturer of Taxotere, admits that 3% of patients given the drug could experience alopecia, or permanent hair loss, oncologists don't seem to know anthing about it. And no one is telling patients that their breast cancer treatment could leave them physically disfigured and emotionally scarred."
I contacted one of the authors of the case report to see if there were any new developments since the article. Unfortunately not. I contacted Dr. Goldberg, another of the case study co-authors, at the Boston University Hair Clinic to see what they might be able to do for me. They coordinated with my dermatologist and she performed a scalp biopsy this summer, which she sent on to Dr. Goldberg. I finally received the definitive word that I am indeed suffering from permanent hair loss due to chemo.
Despite the fact that I knew something was not right, it was a devastating blow to get the news that I will never have a full head of hair again. You go into chemo with the promise from everyone and everything you read that your hair will return. It may be curly or a different color or texture, but everyone assures you it will come back. For most people that is true. But those of us for whom it is not true have to adjust to a whole new reality.
Even before I had the biopsy done, I had finally decided it was time for a wig. After wearing scarves for a year and a half I wanted to look "normal". They are, as many people describe, hot and itchy. The minute I return home, I take it off and go "bald". Everytime I pass a mirror I am startled to see myself and am very discouraged by what I see. When I want to step outside to empty the trash or take the dog into the backyard, I put on a baseball cap. I do not want to be seen as I am. Even though my wig is a good one and people comment on how natural it looks, I am much more self-conscious. In addition, there are so many adjustments one has to make to life without hair. I am about to go off on a long journey, half way around the world. Do I want to travel for the better part of two days in the wig? Do I want to wear a scarf on the four plane rides and signal to everyone that I am a cancer patient - even though I have long since stopped chemo and my regular follow-ups show no sign of the disease. What do I do if I go swimming, or when I get on a boat in the salty sea air in search of ocean birds? Things I once took for granted have become problems that need to be solved. But most of all, this is one scar I didn't anticipate, and, unlike the others I have from cancer treatment, it is such a public one!
