Conquering Cancer in the time of Covid

#6 What is the Worth of Hair?

December 13

It’s been one month since that devastating diagnosis turned my world topsy-turvy. So much has changed and so much has happened.

This has been a good week. Tuesday and Saturday I went for good long bike rides over my usual route — 15 miles through the mountains — Piuma, Shueren, Stunt, Mulholland, Cold Canyon. Went the whole distance. Used a bit more power assist and a lower gear than before but still got great fresh air and wonderful cardio. Slept so much better last night after exercise. Had a craving for chopped liver — so whipped some up for the first time in decades. Yummy. I guess my body needs the iron or whatever nutrients liver offers.

Here’s another “You Can’t Make This Stuff Up” tidbit. I went to the dermatologist this week for my routine six-month skin check. Fortunately, there’s no alarm on the skin cancer front — nothing to remove or freeze off. But, heaven forbid I should have just a routine, nothing to worry about, visit. Unbeknownst to me, I have a rash all over my back. It’s called Grover’s Disease (no relation to Sesame Street). A very rare condition of unknown origin, usually found in middle-aged men. So of course, now I have it too, because we all know I’m really a man, right? It’s not dangerous. No known permanent cure. It comes and goes. It can be very itchy. So there’s a bright side. I’m not itchy. And now, I have yet another pharmaceutical in my arsenal, a lotion to apply for two weeks, and we will see if it resolves. The fun just keeps on coming.

Ask yourself please: What is the worth of hair? I’ve been pondering this question for several weeks now, as I’ve had to decide. What is the worth of my hair? Value can be measured in multiple ways. Financial, Emotional, Psychological, Aesthetic, Health. How can I determine the value of my hair?

Aesthetically, hair makes a fundamental contribution to appearance. When I was a young girl in HS, my hair was one of my favorite features. Blond and straight, parted down the middle, no bangs. In uniformity/conformity with the prevalent desirability. While other 17 year olds went to bed with rollers and hair bands constraining and taming their curls, I had a wash and wear hairdo. As an adult, I’ve often wished my hair was thicker, as my baby fine locks limit the life of every fashion “do”. Every curl insists on returning to its natural state long before I’ve gotten full value from my investment in the stylist’s chair. And I’m never able to adorn my locks with any beautiful barrettes or clips. I just don’t have the volume required to fill them out. They’re “one size fits all”, which translates in my case to “one size fits none”…guaranteed to slide right out.

In recent years, of course, my purple highlights have also been my signature feature. I’ve really enjoyed my purple nod to relevance and youth and it has earned me more than a few compliments. A kindergartner asked me a few years ago if “you were born that way or do you paint your hair?” I think maybe she was afraid I had actually been born that way! More than a few of my students suggested I should celebrate retirement by taking it to the extremis — going full on purple. That’s a little too radical, even for me.

So aesthetically, my hair has considerable value. It frames my face and is a salient feature.

From a health perspective, my hair keeps me warm. The down on my corps rises and falls to regulate my temperature. So a winter without hair would be a colder one. Eyebrows and eyelashes shield my peepers from dust, dirt, foreign objects. My hair has a health value.

Emotionally/Psychologically — what’s my hair worth? My dignity? How will I feel if I’m stripped of my tresses? A bald pate is cancer’s calling card. How many times have I averted my eyes from the sad women with wrapped heads? No matter how beautiful the scarf or how elegant the wig or wrap style, it’s a clear signal of illness, frailty, suffering, and evokes immediate pity along with “There but for the grace of g-d go I” pathos. I don’t want to attract negative attention to my condition. To be “that woman” who is too difficult to look at, who invites distance, physically and psychologically. My hair gives me social status and a sense of self-worth.

So yes, I’m attached to my hair, and I’m grateful that at this moment, it’s still attached to me. But I have the good fortune and opportunity to decide what exactly is the value of my hair? And to what lengths will I go to preserve it?

There is a technology for chemo patients called Cold Caps, which will preserve the hair on your head through treatments. I have a friend who successfully used them and my oncologist suggested that they would be available to me if I chose. My immediate reaction was, yes, of course! If I can retain my hair, my dignity, wouldn’t that improve this awful experience at least a little bit? So I made the calls to arrange it. And then I learned the whole truth.

The cold caps must be cooled on dry ice. Application begins one hour before treatment. The cap must be replaced with a freshly cooled cap every 25 minutes until 5 hours after treatment ends. Special training is required to perform this ritual. Whoever is doing it must be present during the entire infusion and then must travel home with me for the remaining 5 hours — not to mention that the drive to/from the infusion center is longer than 25 minutes so we would have to do a swap in the car. The caps people will train a family member or friend to perform the service, or a professional can be employed.

So…I considered. In my case, right now, in the middle of Covid, there is no way I can impose on family or friends to take on this responsibility for 16 chemo sessions. Do I want a stranger then, hovering over me, swapping my caps, for 10 hours on chemo days? Coming home with me? In the middle of the worst surge of the Covid pandemic! How will I know this person is not infectious? How uncomfortable will it be to have a

F cold hat chilling me out as my poisons heat up my veins? I often run cold to begin with. Will chemo be easier or harder if I’m shivering through it?

How much is my hair worth financially? Most insurance now covers the expense of cold caps. EXCEPT Medicare and Kaiser! So lucky for me, it would be completely out of pocket. About $12,000. Yes, that’s not a typo — 3 zeroes. That can buy quite a few wigs. Still, if I decide it’s worth it, we can afford it. (Especially, and morbidly, if the treatments are unsuccessful, I might as well spend the money now. It can’t follow me into the urn with my ashes.)

So, I considered. What is the worth of my hair? Is it worth the risk of exposure to Covid from a stranger changing my caps? Is it worth the discomfort of a frozen head for 10 hours? Is it worth the money?

I considered. Who will see me bald? Where am I going these days anyway? I haven’t had an in-person social experience outside of my hubby and my medical teams in over a month and now, in the middle of the worst pandemic surge, the only safe place for me is right here at home. So hubby will see bald me. The birds and coyotes and deer will see bald me. My mirror will reflect bald me to me and I truly dread that. But no one else really will see bald me. I won’t be “That poor pitiful woman” in many public places, or with friends at a restaurant, or at a party. I’m not going anywhere fun and neither is anyone else right now. By the time the world reopens, I should be through the worst of this.

So, I decided. My hair definitely has value and worth. I still have it today J. But it’s not worth taking the extra risk of Covid infection and it’s not worth the discomfort of sub-arctic head cooling just so that my main squeeze and I don’t have to be confronted with my hairless self. He has been telling me for years that he thinks I have a well-shaped head. We are actually going to find out for certain if that’s true. My hair’s days are numbered. One day very soon, we will get out the clippers and it will be gone.

And then….My dear friend crocheted me a wonderful hat that fits perfectly. It’s soft and warm and cute. I will definitely get lots of use from that. My kids got me a gorgeous Hermès scarf. But I need lessons — when I tie it up I look like Aunt Jemima. I purchased 3 hats with hair. They’re kind of funky and fun and if I need to look more “normal” they will do the trick. And there are many other head coverings available online to provide me with comfort, warmth, and presentability during my hairless days.

My hair has always grown really fast. I really hope that doesn’t change, and that it does indeed grow back. So, soon, my hair will be just a ponytail in a keepsake envelope like baby’s first haircut. It will be gone. But, hopefully, not for good.

On Wednesday, I’m scheduled for my second torture installment in the infusion chair. I’m truly dreading it — so afraid to have a repeat of the first night. My strongest hope is that whatever adjustments are made to my pre-launch cocktail will be sufficient for a more tolerable, less frightening experience. They say “What doesn’t kill you makes you stronger”. After chemo, I’m really going to be Wonder Woman.

Jill