A Bad Hair Day

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:

.Source

"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!

Wigging Out

Here I am, 11 months from my last chemotherapy session and I still wear a scarf when I’m out in public. It’s not that my hair is too short for my liking. It could be 1/8th inch long, but as long as it covered my scalp I would gladly go out into the world with my head uncovered. It’s that I still have more scalp showing than not. Not even a Donald Trump comb-over would allow me to pass for someone with a head full of hair.

  

Although I don’t mind wearing scarves, now that I’ve finished chemo and my yearlong herceptin infusions, I would like to feel as though I look normal and don’t still look like a cancer patient. It doesn’t help that my eyebrows and eyelashes have pretty much lost all the pigment they once had! 

One way I could look normal would be to purchase a wig. However, I made a decision early on in my treatment that a wig was not for me, and I opted for scarves instead. Once I got over being self-conscious about being easily recognizable as a cancer patient, I found the ease, comfort and colorfulness of the scarves suited me fine. They weren’t itchy or terribly hot, as I’ve heard wigs are. But now there’s a new wrinkle. I’m in the process of looking for a part-time job and although it’s not legal for employers to discriminate against me because of my cancer, you can’t really help how people feel deep down about hiring someone who has clearly been ill. In the interview or two I’ve had, I try to be up front about my cancer and to explain that I’m done with treatment and am fine, except for the return of my hair. I do this because the interviewer can’t legally ask about my health, and I want to allay anxiety about whether I’m well enough to work, or will miss a lot of work because of illness. Nonetheless, who’s to say that my preemptive strike has the desired effect?

I’ve had several friends and professionals tell me that although it shouldn’t matter, I have a better chance of landing a job if there is no sign that I have been ill in the first place. I’m torn. I would like - need, actually - to be working again and want to do everything I can to get a job, but I’m not eager to go against my well-considered decision to pass on a wig. I’d like to think that a potential employer would see past my recent health history and would recognize the value I could add to their operation. Perhaps that’s too idealistic on my part, but I think I’d prefer to work for someone who would hire me despite the scarf.  Time will tell, whether I give in or hold firm, but what would be most helpful would be for my reticent hair to pick up speed and fill in the gaps a good bit faster!