Wonder…

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
― Albert Einstein

1 year. Narrowsburg, New York, 1968, with Grandma Bertha Bennett

I lost my hair last Friday. I had been told that somewhere along the radiation highway, the hair-loss checkpoint would be encountered. Dear friend Charlie and I were flying south on Interstate 91 from radiation #15 (out of 33) in his celestial blue Z3 roadster convertible. Top down, with the cooling autumn Vermont air filling our lungs, we smiled knowingly. Words need not be spoken when you are in a convertible. If you told me we were soaring above the clouds I would have believed you.

My scalp, feeling a little tight since the surgeries, was itchy. I unconsciously pulled on what little stretches of hair I already had left from my prematurely balding pate. To my awkward surprise, I had grabbed a sizable clump of hair. I reached back again. Another clump. “Charlie! Check it out! My hair! Wow!” I exclaimed. He turned, amused by my own bemusement and we laughed. While I had little hair to lose to begin with, the sight itself was surreal. I felt like a sad, tired taxidermied possum, sitting on the windowsill of some barbershop, with its faded, dried out, shedding hair and patchy spots. Despite the oddly comic nature of it all, for both of us, and later for Barb and the children, there was pause. Barb later shared that on the morning of that day, she found the keyboard of the computer covered with hair, hair she quickly identified as coming from my scalp. (insert joke here, go ahead) A reality check. A small wave of sad.

For the past week I have been wondering if the radiation was placebo radiation. I joked with the staff. “Are you sure that thing is turned on?” because I feel that I have yet to feel the full cumulative physical effects of the radiation. Yes I get tired, slightly nauseated, irritable and have some fairly intense headaches, but how much has been from the radiation has been hard to tell. These uncomfortable symptoms may also be the result of watching the Republican “debate.”

My appetite has not waned. When I asked if I would lose weight, Barb smiled and said “Yeah, if you stop eating.” My internal motor tends towards overdrive anyway so maybe I’ll slide through this with little trauma. But indeed, the daily dose of 180 cGy (centigray) ending in a total of 5940 cGy is very real.

Ah Trilogy, you fine, sleek linear accelerator,  I know ye too well!  You, with your oh so “powerful advanced motion management capabilities,” and your sexy “Gated RapidArc open motion management interface.” I am indeed grateful as “treatment times are shorter” and am even more thankful that “the precision of Trilogy allows you to spare healthy tissues to an extent that was unimaginable only a few years ago” because, well, this being my brain and all, I’d like to preserve what little healthy tissue I had to begin with.

Unfortunate 3-Piece wool suit, Age 11?

The reality of losing hair due to the effects of radiation therapy offers a very visual reminder of what is often a very hidden disease. Weight loss, skin change and other signs can exist but the loss of hair can be jarring for many. So while it was expected, it was a bit of a startle to see that I now have patches of hair missing where the beams were targeted, penetrating my skull and, we hope, killing off the residual cancerous tissue. There are very thin ‘margins’ applied when using radiation to get at brain cancer. There is little room for error but some healthy tissue must be sacrificed to ensure maximum coverage and the best outcome. I am told that much of the healthy tissue damaged will, over time, repair itself. But what of the once-healthy tissue which does not repair? We shall see. As recent research has disproven the prior notion that the brain is a “fixed” object, we actually have an incredibly plastic organ, capable of adapting and compensating in ways never before believed.  (A must read: The Brain that Changes Itself by Norman Doidge)

As this rare form of cancer is incurable and known to recur, the ependymal cells which claim themselves are truly sinister, like billions of ticks who have burrowed their heads too deeply to be completely removed. So they are radiating as much as they can.  As this is a one-time form of treatment, the next line of attack, barring another surgery, will most likely be in the form of clinical trials for which I will be eligible and am already enrolled in a national registry.

My initial surprise with losing my hair was followed immediately by guilt and profound sadness as my thoughts turned to a co-worker currently undergoing radiation treatment for breast cancer. She, with a beautiful, cared-for mane of hair, was losing all of hers. Devastating.

Without question, for men, hair loss has nowhere near the emotional weight that it does for women. And the most prevalent cancer in women, breast cancer, which will result in 230,480 new cases and 40,000 deaths this year alone, attacks yet another visible body part having so much power both symbolic and real.

I don’t wish to say that men have it easier with cancer. That would be absurd, demeaning and offensive. Cancer in all of its forms and stages, is a rotten cockroach of a disease. But surely the emotional impact for women when it comes to these two harsh realities, hair and breast loss/change adds yet another potent mess to deal with when the freight train of this disease has crashed through your home. My heart sinks as I cannot even fathom, try as I may, to comprehend this additional trauma.

15 yrs. Delaware River, PA. Note air-guitar use of paddle, F-chord

Back of barn with friends after rehearsal. Bread and Puppet, Glover, VT, Summer 1991

So the hair for me. No big deal. It was already wisping away anyway. There is no mourning to be had here, except to say that at one time I had a nice mane of hair and I’m sure it meant something. And now it’s just patchy and thinning. The towheaded baby. The Prince Valiant look. The 80’s feather. The 90’s, whatever.

This is dedicated to those for whom hair is not a “whatever.” When I visit The Norris Cotton Cancer Center each and every day, there is a whole section dedicated to finding hats for people, to helping people cope with hair loss and even a wig bank, where patients can acquire, for free, a wig, as well as receive consultation on how to wear wig or tie a scarf.  Often, hats will be donated or for sale. Many are handmade. There is also a “Look Good…Feel Better” class to help women cope with such side effects as hair loss and skin changes.

This is for the grandmothers, the mothers, the sisters, the daughters, the granddaughters. To women with hair of all lengths, colors and qualities, who have to mourn yet another loss within a loss. For some the hair will return. For others not. The flaxen, the cornrow, the silken, the dreadlocks, the curly, the wavy, the frizzy, the beauty of the scalp all by itself. My deepest respects and love. We will all make our way.

“Wonder” – Natalie Merchant

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

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About moosevt

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5 Responses to Wonder…

  1. Michael Ruse says:

    As usual Mark – your wit, honesty and positive attitude in the wake of so much worry,has once again reached down from the cloud your convertible ride was on and smacked me across the face to embrace and be thankful for each day. So I am sitting here logging into my computer before reading this, and feeling irritated and griping to myself that I can’t crack this kink in my neck; whining about what a long week of driving I had….shaking my head at news articles etc.. Then – I read your journal and come to the same conclusion I always have after reading your blogs, which is: what a trivial and selfish prick I am. Thank you Mark – and as is customary – I always wish you well and am proud of your fortitude to press ever forward like you do.

  2. Lauren Hefferon says:

    You have brought meaning to the start of my day and my life Mark. Thank you. Peace be with all us

  3. Jane O says:

    more face to kiss

  4. Annie says:

    Beautiful. I’ve had a few friends and relatives go through the hair loss of post-cancer treatment and can only say I think you’ve articulated everything they were probably feeling and wrestling with. We love you, we love your pate, you don’t need one f&%#ing follicle to be the beautiful Mark we all cherish. Good to chat yesterday and see you soon. Annie

  5. Barbara says:

    great video… you are a wonder! xo

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