Tagged: penguin cold caps

No hair, don’t care—actually, scratch that.

What I thought being bald would look like:

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What I actually look like as a bald person:

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Whole brain radiation does not evenly cook one’s scalp. My hair fell out in a manner that I now know is classified as a “Six” on the Norwood Hair Loss Scale. I also wasn’t prepared for how surprisingly physically painful the process would be. My best friend came over and went at me with Fireboy’s clippers and that helped a little bit, but all in all it was a three-day ordeal which culminated with me sitting in the bathtub with a trash can pulling my hair out in clumps. When I climbed out I had a fight with myself whether or not to look in the mirror. In the end I went for it—I mean, I’m going to have to look at some point, right? I was met with what I can only describe as a monk with mange.

I was fully prepared to weep at the loss of my feminine locks. Like Sinead O’Connor in the “Nothing Compares 2 U” video, I would bravely wipe my tears and embrace my new bald self like the badass cancer warrior chick I am. Right.

Turns out my bald self is a little more monk-y than spunk-y.

Of course, this led to some research on the practice of tonsure, the weird bald-on-the-top look which I’d seen in various forms of art in history classes, which I learned was mostly the practice of ancient Catholic Monks. Those guys undertook it as a physical representation of their renunciation of worldly goods, but it also exists in Buddhist, Hindu and maybe even Celtic traditions. So, in typical fashion, I didn’t get what I expected, but I learned something new.

Another side effect of the radiation is an actual physical burn which makes my forehead look like a Boy Scout’s first attempt at a campfire hot dog. That, combined with my funky monk ‘do makes for quite a look, let me assure you. So I slapped on a wig (which I got at Dion’s Le Wig Shoppe in Scottsdale) and added a hat and—lo and behold. I basically look like my normal old self.

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I’m going to keep my number 6 Norwood. If nothing else, I figure it’ll give me an edge on my bangs. Fireboy invented a contraption to replace the Penguin Cold Caps, so I’ll start using that next week and let the hair farming commence. I’ll be posting some info on that in case anyone else wants to do a lil DIY follicle freezing. I picked up a recommendation on some hair and scalp rejuvenating product to try from our PA, (who is also a stylist) and I’ll review here soon, too.

I applaud all you glam baldsters out there, it just wasn’t in the cards for me.

 

 

Summa ope

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In Latin, summa ope means “whatever it takes.” I decided yesterday that’s my new motto. Bottom line. When I roll those words around in my mind, I feel a steely resolve assemble inside me like scaffolding. On the outside I may look a bit worse for wear, but deep down, I feel like a seven-foot tall Viking swinging a bloody axe.

Two weeks ago I was driving along in my car and the phone rang. I stopped at a red light and watched  a gang of overweight, red-faced tourists pedal past my bumper on rental bikes. I pushed a button on the steering wheel and a voice floated out of my speakers. It said, “There is cancer in your brain.”

I hung a left and headed for home. Strangely enough, this news didn’t come as a complete shock. I’d been picking up weird signals—I actually kind of expected to hear something along these lines, though I can’t explain how. I guess if you are really able to tune into your body, it finds a way to let you know. However it happened, I’m grateful.

I met with a radiation oncologist a few days later. He said 10 treatments should do it. I was only a tiny bit terrified because they told me I couldn’t have both radiation and chemo at the same time. I need my chemo. I mean, the last time I went off it for a week, the wheels fell off and I landed in the hospital.

So, I decided I’d have a long talk with my cells. They’re inside me, they should do what I tell them to. I figured it was worth a try. I said, “Cells. Listen up. You bad ones especially. Now I’m going to need you to chill out for a bit. JUST CHILL. Give me two weeks, you jerks. I mean it!” I was very firm. And I meant what I said.

Yesterday was my last treatment. My best friend came along. She handed me a brain-shaped piece of coral. I squeezed it during my last zap and then we went out for Slurpees. (For the brain freeze, get it?) My doctor is optimistic. He said the success rate for stuff like this is around 60% and anyway the radiation must be working on some level or I would be experiencing new neurological symptoms. The best part of the story is that despite all my best efforts with the  Penguin Cold Cap system, I’m going to lose my hair after all. Ha! Good one, universe!

Moving forward I’ll get scans every three months and I’ll be on an Alzheimer’s drug called Namenda for six – it’s been shown to protect against memory loss in patients who have undergone whole brain radiation. The only side effect of all these brain zaps is that human voices and music have taken on a mechanical, robotic tone. It’s like Daft Punk up in here all the time. I don’t really mind it. It adds a bit of interest to the boring stories people tell. All in all, it wasn’t so bad. It seems my cells actually behaved themselves and it was kind of nice to experience something with a beginning, a middle and an end for a change. If I’m lucky, this stage IV stuff will go on and on and on and on . . .

Like I said, Summa ope. Whatever it takes.

Hairgiver

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I made it four years without the hair-killing kind of chemo. I’m super lucky and grateful for that. I didn’t know that cold therapy to prevent hair loss was even an option, and actually I’m still not quite sure — but damn, it sure has taught me a bunch.

If you’re here for the short answer: Do Penguin Cold Caps work? Yes, for me they have worked so far. They are also expensive and they cost a lot, too. Haha. See what I did there?

You see, as it turns out, wheeling two coolers full of 80 lbs of dry ice into the clinic isn’t something I can do on my own. Neither can I lift and fit a freshly sub-zero-frozen cap to my head every 30 minutes for NINE STRAIGHT HOURS. (Yes, that’s really how long it takes.) It’s not that I need help, in order to do this cap thing successfully, I need someone to do this for me. Every. Single. Week.

I have a lot of awesome friends. They are all willing and able and happy to take me to lunch, to drive me around, to sit and hold my hand — but these caps are too much. It’s physically exhausting and really, nine hours? People have lives, and families and hobbies and stuff. So these caps have brought me to a scary place: the place of the hired caregiver.

“Caregiver” equals  “I need help.” For me, coming to this realization has been absolutely terrifying. I’m not a person who is used to asking for or needing help. And today I need help for the b.s. vanity which is keeping my hair—but tomorrow I might need help to do very basic things. Ugh. See? Scary. Also scary? The first weirdo who answered my Craigslist ad for a hair helper. (shivers)

NEED MOAR HAIR MEMES PRONTO

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Ok. I feel better now. I did finally find a person to help me. But for my sanity’s sake, I’m not calling her a caregiver.