15 Seconds of Chilled Fame

This will be the first of several quick “catch up” posts. Just before infusion number 2, my oncologist tells me that I would be the cold cap “poster child.” I don’t take her literally, but a few days later I get a call from UCSF Public Relations asking if I would mind talking to a New York PR agency that is working with them on the cold cap thing. Sure, I say.

It turns out I am luckier than I knew to have my hair. I am one of 20 patients in a “feasibility study” to make the case for a larger study of 100 patients. The FDA is worried about “scalp metastases” in patients who use the cap. The most common metastasis in breast cancer is breast-to-bone, my oncologist tells me. Breast cancer cells almost never set up shop in the scalp, she explains. They’re trying to build a case for larger studies, and for opening this option up to women who have more advanced cancers, stage 2, maybe even stage 3.

Women who know about it are clamoring for this option, one that has been used in Europe for 15 years. Cancer is scary enough, losing your hair makes everyone else scared of you. If you’re a young, or a youngish, or even an oldish woman who’s bald, that screams cancer. Unless you’re Sinead O’Connor, which we’re not, it makes you a person to be avoided. Not only that, baldness messes with your sense of self. It’s cold. Wigs are scratchy and expensive. Hats are a hassle.

Many other American women who want to keep their hair during chemo opt to pay out of pocket for what’s called the “Penguin Cap” it’s a modular hood with pockets for dry ice. It makes a woman look like a very cold, be-turbaned Sikh warrior. The women and their helpers (usually a husband) have to bring the dry ice to the infusion center in a big Igloo cooler. When you put on the Penguin Cap, there’s no gradual cool down time as with the Dignicap I wear. With the Penguin, it’s just Wham, you’re frozen. You put the cap on and immediately your scalp goes to 33 degrees Fahrenheit. Ouch.

Then, a few days later, local PR calls to say they’ve got the local ABC affiliate, KGO, interested in doing a story. Could I come in the Wednesday after Thanksgiving to do an interview and a mock treatment?

The TV producer cameraman meets me and Dr. Rugo and the PR people in the infusion center. Dr. Rugo explains how the cap works by constricting blood vessels to the scalp and keeping the chemo chemicals out. Apparently, hair loss is most linked to the peak levels of chemo in your blood, so if the drugs can just be kept at bay for the infusion plus one hour, it seems to be enough.

Dr. Rugo has been impressive every time I’ve seen her, but she also turns out to be very polished and savvy about the media. She answers questions clearly and warmly. She goes through one take, two, three, approaching each as if it is a new day.

She explains a lot of the science. Apparently, the key days for hair loss are seven to ten days after the infusion. The hair follicles begins to constrict, and new hairs start to push through the follicles, this pushes the old hair out and your hair comes out in clumps. I don’t quite understand why the new hair that does the pushing doesn’t just keep growing, but I’ll ask Dr. Rugo the next time I see her.

We spend 90 minutes with the cameraman/producer. We’re inserted into a 2-minute segment, so I think we get two quotes each. I know that’s par for the course, I’ve done it to people a thousand times over the decades that I have been a reporter. I’ve been interviewed for TV and radio many times, but it always makes me sad when so many interesting things get left out. In this case, that includes:

• The hair follicle pushing thing.
• The back of your head is generally warmer, and hair tends to grow faster there.
• Your bangs grow more slowly (this is amazing to someone who’s always tormented by bangs three weeks after a hair cut, but there you have it.)
• The Dignicap is filled with a liquid kind of like anti freeze. When it’s warm, it swirls around the cap. When it’s cold, it expands and fills all the cap’s channels.
• There’s a complicated computer program that runs the whole thing and has fail-safe after fail-safe built into it.

None of that makes it into the KGO story, but that’s OK. If it get’s the word out that you don’t necessarily have to go bald when you have cancer, then I’m all for it.

Advertisements

About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
This entry was posted in Day By Day and tagged , , , , , . Bookmark the permalink.

2 Responses to 15 Seconds of Chilled Fame

  1. laurie says:

    hey congratulations on your 15 seconds of chilled fame! loved it. doesn’t it feel crazy that your tv moment has to happen when you’ve got an icepack on your head? i was interviewed on tv news recently, before the world series, b/c i was decked out in giants gear. cruel irony that i finally got my 15 seconds of fame, and i had to be wearing a wig!!

    just want to say that losing my hair was MUCH more terrifying to me than losing my breast. i’ve had long, thick, strawberry blonde hair my whole life. it was kind of my trademark physical attribute.

    but, now that i’m bald, i’m kind of into it! i feel like a freakin warrior. like: don’t mess with me. it’s been an experience i never would have chosen or done on my own, but it’s been a powerful piece of this whole cancer ride, in a way that i NEVER would have anticipated. so, i just put that out there for what it’s worth. if someone can’t get the cold cap, maybe they’ll have the shockingly, unexpectedly, positive experience that i have.
    xo, laurie

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s