Tuesday, March 10, 2015

Hair or Not, Here's The Problem

As someone going through chemo right now, who also has a full head of hair (let's not talk about the color of my roots, at least I have roots) I was very gratified to see the story below in the NY Times this morning.

The thing that everyone who's diagnosed with cancer asks, maybe not first... first is usually "What are my chances? or Did you get it all?" The next question is always, and trust me I've now been to this goat-roping twice, "What happens to my hair? Will I lose it?"
Now the first time I went through this 25 years ago, I didn't tell anyone I had cancer or was having treatment until it was all over with. I got the guy who made Madonna's wigs for Dick Tracy to make a human hair wig to match my own, I was lucky enough to be able to do that, plus I laid low for a certain amount of time. Writers can do that too. Who wants to look at us anyway? As for the various needle marks, band aids, bruises and tracks on my arms from the chemo infusions, to me, being considered a junkie was better than people knowing I had cancer. We were worried about our employment prospects ( Alan and I are screenwriters and we work as a team). Back then people who had cancer didn't talk about it very much because back then people didn't equate cancer with survival. Cancer meant you were cooked, pitying glances, how much time has she got? A movie of the week scenario. Plus, I certainly wasn't going to talk about it at the time as even with chemo, I was given a poor prognosis. Yeah, I'm the dude with two minutes to live, hire me!
We knew so much less back in those days and yes, I had a very aggressive form of cancer, which today is known as triple negative, which also sounds like a Vin Deisel movie. So why am I here typing this? Because of the few varieties of chemo available at the time I happened to be given the one that worked for me. In fact a recent study that someone sent me, told me that the long term survivors of my type of cancer had all been given CMF. The one chemical name I remember about CMF was the last part, which is flouruorusomething but lovingly referred to by us patients as FU! Highly appropriate.
Ok, so 25 years later I'm dealing with this again, only this time not Triple Negative, but HER2 positive. Once again the same questions, this time in my case, with better answers then the last time mainly due to the invention of Taxol and Herceptin and early diagnosis. Which brings me to those ice hats currently being featured in the Times.
I happen to use those hats, and they work. They are no walk in the park, they are time consuming, painful, and expensive as they are not covered by insurance. But what they are is not about vanity, not about looking great, and twirling ones hair around like a shampoo ad. They are about privacy and dignity at a time when many people find that in short supply.
One of the first things anyone dealing with a serious illness, (no matter what it is) loses is privacy and dignity. Patients are so used to being told to get undressed, stand here, let me see this that or the other, and hey, meet this new group of residents who want to take a peek at your private parts. Think of it as being permanently on TMZ . Nothing is private.
Being able to use the cold caps to keep one's hair during treatment gives one the ability to not have to share their medical condition with everyone, total strangers and friends alike. It gives one the power of choice, something very few cancer patients get to exercise during treatment. It gives one the ability to continue along with ones work without being questioned, to go into a market and shop without being stared at or pitied. To not have to deal with the quick flick away of the eyes, and the lowered glance.
Now, sure people say, what about a wig? Wigs work, yes they do, but if someone all of a sudden shows up at work with a wig and it's not Halloween there are going to be questions. Questions one might not want to have to answer or be asked. That is why these caps are so important to those of us who use them, and why we are so grateful for them. Not vanity, because I sure as hell have had my share of bad hair days my entire life, and I am no beauty.
It's the right not to be questioned about my health unless I choose to mention it. It's the right not to have my job threatened. Cancer treatment has advanced greatly in the last 25 years and depending one one's protocol, many people work right through treatment and feel just fine.
These caps need to be available to anyone who might need them. They need to be covered by insurance as a medical necessity. This is not a put down of those who choose a wig, or who choose to go bold and bald, that is a proud statement, but not a statement everyone is capable of or ready to make.
Wearing a cold cap is not a denial of illness. I know (as do the others who wear these hats) that I'm sick. I'm being treated for a serious illness. I can't sit in a chemo chair for 5 and 1/2 hours once a week without knowing that. I'm certainly not bullshitting myself. I just want other people dealing with cancer to be able to have the one thing that fate, luck, or whatever has taken from us and that's choice. The FDA needs to get with the program that has been used successfully for years in Europe. This should not just be available for those that can afford to do it, or are lucky enough to get into a trial study. It should be a choice offered to everyone, when they have stepped into a world where choices have become limited.
By the way..obviously the lady below is not me..

I should look so good. I do not wear makeup with a cold cap and my skin is covered with Dr. Scholls footpads to prevent frost bite, but other than that I'm all about the jazz hands.


  1. Big hugs Kathy. You have been inspirational all this while. Stay strong.

  2. you are awsome, stay like this, awsome every day! Buona fortuna! You are an example!

  3. The colors of courage and dignity. You are amazing, Kathy.



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