Everything Changes - The Guide to Young Adult Cancer

In 10th grade chemistry I created 40 phonetic spellings of my first name, chose Kairol, and it stuck. (I was born with the Mrs. Brady spelling. And yes, in 1987 you coul make up whatever name you wanted and slap it on a drivers license.)

So, I got curious when I recently learned Matthew Zachary, founder of I’m Too Young For This, is actually named Matthew Greenzweig. He developed Matthew Zachary as an alter ego after treatment. Here’s what he told me:

“When I was a senior in college, I was a concert pianist diagnosed with brain cancer. They said I’d never play again. I had horrific radiation, was so depressed, and thrown into the lion’s den of trying to figure out what happens to your life after treatment. That was the story of Matthew Greenzweig’s life and it was uncomfortable to be him.

I needed to reinvent myself. I taught myself how to use my left hand again and to play piano. I used my middle name ‘Zachary’ as my stage name. It was an identity created out of desperation; I was refusing to let cancer define me. My chaos, grief, and anger got channeled through the anchor of my pseudonym.”

Like Matthew, I messed with my identity during treatment by changing the way I dressed. I created outrageous pseudo-couture outfits from thrift store finds and wore CFM heels to the supermarket. It helped to feel more like Carrie Bradshaw and less like Kairol Rosenthal.  (Funny that my current wardrobe consists of sweatpants and hoodies –I should be thrown to Stacy and Clinton.)

As my cancer has lingered, I’ve switched careers from a choreographer and to a writer. Living with incurable cancer, I feel more comfortable holed up in the contemplative den of my apartment, living the writer’s life. If I had a choice, I would rather something less painful than young adult cancer as the catalyst for a career change, but here I am. And I’m pretty damn comfortable with my identity.

Illness changes many parts of our identity over which we have no control – becoming a bald woman, someone who can no longer work, who cannot conceive children… But, have you ever responded to illness with a temporary or permanent identity change that you do have control over?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to find out why Nora wore her Chrissy Hynde wig long after her hair grew back, and Mary Ann started dressing in outfits that made her feel like a lobbyist.

You’ve asked for it so here it is: for the next two posts we’ll be dishing on early menopause.  I still get monthly visits from Flo, so I asked Emily Beck to write about this subject and moderate conversation.  Emily is a 30-something diagnosed with ovarian cancer in summer of ’07 and finished treatment a little over a year ago.  Take it away Emily:

TURN, AND FACE THE STRANGE
Somewhere in Cyber-space, a fellow inductee into the world of early menopause said, “Menopause does not mean you suddenly develop an irresistible impulse to start shopping at Chico’s.”  When I first heard this witticism, I had yet to be gripped by one of the most feared dimensions of The Change:  WEIGHT GAIN.  I had lost about 15 lbs. thanks to surgery and chemo, so it wasn’t until quite a few months after treatment ended that I started to feel myself…well, expanding.

Before cancer, my weight had always been stable (save for a bacchanalian year spent living in New Orleans), so the menopause-induced shape-shifting which befell me was a bit hard to accept.  Most of the weight seems to have settled in my boobs, hips and thighs, so with careful sartorial planning, I can still show-off my slim arms and calves without drawing too much attention to what I think of as my middle-aged midsection.    Nevertheless, when I catch myself in the mirror at the gym or – heaven forefend – in a dressing room, I think to myself, “I am now officially middle-aged; I am shaped like a pear.”

I am working steadily on making my peace with my new body.  So gone are the days of trying to stuff my boobs into pre-cancer bras (I’ve gone up a cup size) and cinch an old pair of jeans (also up a size) around my lumpy belly.  When I was unpleasantly thin after surgery and during chemo, I hated the fact that I could feel my pelvic bones so prominently.  Now, those same bones are nicely padded, thanks to menopausal weight gain.

At 36, most of us probably aren’t thinking about menopause.  Middle age and the inevitable over-turning of the hormonal apple cart might be out there on the horizon, but before my unexpected introduction to this traditionally mid-life extravaganza, I still thought of myself as pretty young.  Now, though, I have to wonder if cancer hasn’t made me old before my time.

Do you ever look in the mirror and think, “Who is that?”  Can you tell if changes in your shape are from hormones, treatment, or just being a young adult who is naturally starting to age?  Have you experienced early menopause?

For practical resources on coping with young adult cancer and body image check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My tiny little ass is getting fatter. And I wrote a comment about it today on a New York Times Well Blog post about cellulite:

“I have been stick thin for years from cancer treatments and only in the past few months have I seen cellulite on my body for the first time ever. It is kind of unattractive, but a vast improvement to looking like a victim from the camps. It might take some time to get used to, but I’m welcoming my cellulite.”

I don’t talk about my body much because in the world of women it is easy to be hated for being skinny - even scary skinny like me. I’ve always been svelte. My body was great for ballet, but freakish by other standards. ‘Toothpick legs’ was the name kids called me at summer camp. Not a confidence booster.

Before cancer I was a healthy 134 pounds. Since my hormone therapy I’m now 112 despite my efforts to gain weight. I feel like my bones are going to impale my partner, like I might be easily carried away in a storm. I catch people looking at me with tempered disgust. So yes, the ripples of fat that just showed up on my ass in the last few months are not attractive but are okay with me.

Some of you may be rolling your eyes by now thinking “whatever you skinny bitch.” I know that being underweight is a hell of a lot easier than being overweight in this culture. But my body is my body and I want to write about it.

It is weird to work so hard to keep this body alive and then to focus on something as seemingly shallow as looks. But how we look can often impact how we feel about ourselves, and that is something worth writing about.

Has your body changed shape or size from surgery, treatments, hormones, steroids, lack of activity? How have you adjusted to this change? Do you feel like other people notice or comment on your size? How often do you think about your appearance?

I like my body and I have no problem wearing short skits or low cut shirts. But as a young adult cancer patient I shudder at the exposure of a hospital gown.

I excel at finding new fashionable ways to tie on a hospital gown, using excess fabric to craft fancy bustles, pleats, and empire waistlines. My creations are often inspired by beat up copies of Vogues sitting next to me in the ladies waiting room.

Despite my loathing for hospital gowns, I recognize that those fly-away openings and simple, barely-there closures exist for easy access. In the end, forget designer garbs, I’d rather docs be able to access my body – especially in case of emergency.

An article in the Wall Street Journal today describes a new grant by the Robert Wood Johnson foundation that will support the creation of new hospital wear. They also report on the Hackensack University Medical Center in New Jersey that commissioned new hospital wear by designer Nicole Miller. The argument exists that new privacy promoting gowns that will boost patient morale.

None of us want our asses hanging out as we stroll the unit with our poles. And, I think patient moral is incredibly important – it helps us comply with doctors orders. But, I think our moral suffers way more from administrative issues, cost issues, and lack of face time with doctors. Given that these new fashion gowns will cost more money to produce and purchase, I say the Robert Woods Johnson foundation and hospitals find other ways to spend their time, dough, and new discovery resources.

What do you think? How important is it to you that we design new hospital gowns? What do you think about current gowns? If you were to redesign an new gown what would it look like? Share any good hospital gown stories you have.

In my book, I write a lot about being single and jealous of what I called those “married cancer bitches.” I also talk about now being one of them. Cathy Bueti is the author of Breastless in the City, a breast cancer memoir that focuses almost exclusively on dating and love. It hits the shelves tomorrow, so I thought I’d ask her about what it is like to write a whole book about cancer, romance, and intimacy:

What was the most satisfying part of writing Breastless in the City? What was the hardest part? The most satisfying part was knowing the potential my story had to help others. The hardest part was digging up all the emotional stuff that had been hidden away for so long. In some ways it was like reopening old wounds.

If you could turn back the hands on the clock and had control over your fate, would you choose to get a cancer diagnosis? Probably not. However, I am grateful for having gone through it because of what it taught me about myself. It also lead me to my husband and to all of the great people I connected with through the experience.

Did you have body image issues after treatment and how did you deal with them? Hell Yeah! It was very tough to deal with it. A diagnosis of breast cancer especially affects your sexuality so directly. I had to connect more with myself on an inner level in an attempt to separate from the physical stuff so I could see that who I truly am was still present. I still struggle with that.

What adjectives do you use to describe yourself as a patient? Challenging, inquisitive, and unfortunately anxious!

What is your cancer motto? A quote from Emerson I used in my book, “What lies behind us, and what lies before us are tiny matters compared to what lies within us.”

So readers, if you were to write a cancer memoir, how much of your book would focus on aspects of love, dating, relationship, sex, and body image? Have you experienced what Cathy talks about with connecting on an inner level to separate yourself from the physical experience? (I actually did some what more of that before cancer and less since cancer.) What is your cancer motto or three adjectives you use to describe yourself as a cancer patient?