Hair Today... Gone Tomorrow?

As with nearly every cancer patient, the idea of losing my hair was really, really hard for me. Partially because hair is such an outward expression of beauty in our culture, but mostly because hair loss screams “I have cancer!” I do not feel sick (and nor do I consider myself to be a sick person!) and I do not want to be treated that way.

How my hair loss after TCH went:

Cycle #1 (Weeks 1-2): Lost all of the hair on my bikini line, and all of my nose hair (which, by the way, I miss WAY more than the hair on my head!). I cut my long hair down to chin length, so that I could make the change gradually.

Hair, exactly 7 days after infusion #1

Cycle #2 (Weeks 1-2): My hair started to fall out quickly, but the thinning was not particularly noticeable in terms of how I looked. I could not stand the constant thinning, though, so I consulted an amateur hairdresser (my husband... did not want to pay for a haircut that would last three days). Unfortunately, given that all of his experience in hair cutting has been been with my 3.5-year-old son, the  intermediate hairdo made me look a little like Brienne of Tarth (this is not recommended). About 10 days after cycle #2, the thinning got to the point that I just shaved my head down to ¾ of an inch.

The intermediate look (not recommended)

Cycle #3 (Week 1): The nadir. On TCH, I have not lost my hair entirely, just had a ton of thinning. This is the thinnest it got.

5 days after cycle #3

Cycle #3 (Weeks 2-3): My hair started growing back... noticeably! Lots of short, platinum blond sprouts, which is something of a return to my pre-adolescent hair. My daughter and I are now in a race to see who can get hair to her chin first!

Cycle #4: We will see how it goes. My eyelashes and eyebrows are still in place, and the hair on my head growing pretty quickly. No signs of life for my nose hairs, though…

If you are interested in another photo journey of hair loss and return, a good set of pictures can be found here.

How I handle my mostly bald head:

Given my fear of hair loss, I tried the normal “hiding” strategies—bought a wig (but have never picked it up, let alone worn it outside), bought a hat with hair, and now have quite a scarf collection. I think I wore the hat with hair for one weekend, and I wear the scarves occasionally when I see patients, but I never ever wear the wig.

To some extent, I feel like I am lying when I wear the hat (or probably the wig)—part of the reason cancer and hair loss has such a stigma is because people are embarrassed about it. And, as I have observed in many social arenas, if you think it is embarrassing and a stigma, then it is. If you do not think it is embarrassing, then it is not. Think about the popular girls in high school. The vast majority of them were mean, and not particularly accomplished. Why were they popular? One reason. They thought that they were. Same thing holds true for hair loss in cancer. If you think there is a problem, and try to hide it, then people will think you are sick and trying to hide it. If you walk around proudly like you feel good and you are not sick, then everyone else will think the same thing.

So, I have settled on not hiding my relative lack of hair, for the most part. I do wear a scarf when seeing patients, and I have mixed feelings about this. I am not sure it is entirely appropriate to have patients see me with no hair, but wearing the scarf definitely invites comments and concerns from patients that I never get when I am bare-headed. For example, I was seeing a delusional patient (who was literally slapping away bugs that were not there) and s/he told me that I clearly had worse problems than s/he did. Another (very kind patient) told me at the end of a visit that s/he really hoped the cancer is okay, and yet another brought me a bar of chocolate.

What works for me?

Most of the time, I wear a "bang buster" headband from lululemon, which frames my face, and gathers the small amount of hair that I have, to make it look like I have more than I do. I also wear dangly earrings, which also help with the illusion of hair.

I go around with a headband and earrings about 95% of the time. Wearing my headband, I have gotten precisely one strange look (far less than with the other strategies) and have never had anyone ask me if I have cancer, or if I am doing okay.

My advice? If you act like your bald head is totally normal, everyone else will, too. 

Infusion #4: Past the Halfway Point!

Infusion #4 going in as I type.

This is very exciting, as our goal all along was to get in 4-6 cycles of traditional chemo. The major clinical trial was conducted with TCH x 6, followed by Herceptin for a year, however, more recently presented data suggests that 4 cycles is non-inferior to 6 cycles, and so, in my mind, I consider 4 a must and 6 ideal. But the great news is that I reached the minimum goal!

Back on the allergy unit again, which, while painfully slow, is honestly not that bad. For the second time in a row, I was able to avoid the high-dose steroids that are the worst part of the regimen for me. I would say the second worst part is the neulasta, followed by poor wound healing and a funny taste. The other symptoms are manageable. At this point, I have most of them under control with over-the-counter and complimentary- and-alternative medicine strategies.

As for how things have gone, each infusion has gotten easier. The first was definitely the hardest, mostly due to dread (as my very wise Godmother reminded me, the dread of something is often worse than the reality! And this has definitely been the case for chemo and me).  It was also hard because I did not know how to manage the symptoms that come with chemotherapy, and so my pre-and post-infusion protocol has gotten better with each round. Second was better than first, third better than second, and I am hoping fourth better than third.

And the really exciting thing?....

My hair is growing back!!

(And, in one of the greatest comebacks in sports, the Americans won 8 in a row to keep the cup home!)