April 17, 2009

Cancer and Eating Disorders

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I read a med journal article yesterday about vegetarian teens being at risk for anorexia and it got me thinking about cancer survivors and eating disorders.

In my late teens and early 20s I was anorexic and slightly bulimic – no puking just herbal laxative tea.  A vegan, lola-granola, ballet dancer, I was afraid to eat rice cakes because they had .05 grams of fat.  I obsessively read labels and scrutinized every ingredient that entered my mouth.  I exercised like mad and couldn’t look at my body in the mirror. Reflecting on this, I’m damn proud that I figured out how to pull my ass out of such a scary starvation addiction.

By the time I was diagnosed with cancer at 27, I was eating normally, had hips and curves, loved French pastries and brisket.  So it was a jolting mind fuck when part way through my treatment I realized how much this disease could mess with my appetite.

With cancer, I wasn’t eating because I was dizzy and nauseous. My treatment protocol necessitated that I inspect for iodine every morsel I put in my mouth. I was bombarded by media images, books, and trendy articles telling me that if I ate vegan, avoided sugar, and subsisted on vegetables I could beat my cancer. My medication made me shed 18 pounds.  I looked and felt anorexic all over again, even though I wasn’t.

I had some serious in the mirror talks with myself to keep me on track and not let all the side effects, stress, and fashionable cure diets slide me back into my horrible habits of the past.  I’m still stick thin from my meds, but my mind is balanced and I’m aggressively trying put on pounds while eating healthily.  (Yes, you can add your name to the wait list of people who want my problem.)

Fifteen-percent of young women in the U.S. display some kind of eating disorder patterns, so I cannot be the only gal (or guy) who has dealt with young adult cancer and the memory of an eating disorder.  Yet, I never hear it spoken about.  Do you?  Did food, appetite, weight gain, or weight loss ever mess with your mind during treatment?  If so, how did you deal with it?  Do you ever take cancer diets to an extreme where it seems obsessive or unhealthy?  Where is the balance?

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April 14, 2009

Cancer Sex and Dating

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Sunday, on The Group Room radio show, I read excerpts of dating and sex tips from my book, which served as the springboard for conversation between a panel of young adult cancer experts. Listen to the podcast here – it features the orgasmic Stephanie LaRue, fabulous author Cathy Bueti, and creative musician Charlie Lustman (come on, it is kind of funny that a guy named Lustman is talking about sex.)

It was a great conversation. But, now I want to write about issues that weren’t talked about on air – some less spontaneous and vivacious parts of sex and cancer that may or may not be your reality.

When I interviewed patients for my book, I met survivors with
post-traumatic stress disorder who couldn’t stand to have their bodies touched by a lover, partner, or spouse. Others had hormonal shifts that threw them into deep sexual malaise. For some just the stress of dealing with cancer zapped their sexual energy and they hadn’t had sex with their spouse for over a year. This stuff is real and is really hard.

I deal with many of these issues in my book, and while I’d love to hear a dialogue about it on air, it is hard to find survivors willing to publicly expose such private experiences. So I want instead to make use of the ability for you all to comment anonymously, or using your real name, on my blog, to speak out loud about some of your real life experiences of cancer and sex.

Has your cancer prevented you from having sex for long periods of time? Are you embarrassed by your body or hindered by medical devices? Has PTSD spilled over into your sex life? Have you had the opposite problem of being such a horn dog that you wanted to hump everything in sight and what was that like? (I’ll tell you from personal experience that it isn’t all it is cracked up to be!) How did you handle these sexual issues? Is there a comfortable place or person you can talk to about this stuff or do you just keep it inside? If you have a partner, does it drive a wedge in your relationship or have you grown closer? What advice or hope do you have to give to others in this situation?

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April 13, 2009

Cancer Sugar Daddy

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Last night I read in the New York Times Magazine about a sugar daddy website, and decided it’s time to write about my cancer sugar daddy incident. But first, let me share with you a quote from my book by Wafa’a, a single lymphoma patient:

“Cancer makes you feel really alone, and you just want to be held and feel loved. Or maybe it is a coincidence, and I’d just really want those things right now even without cancer, and it’s just part of being twenty-four. I want to matter to someone else. I want to feel like someone is thinking about me. Since being sick, I’m just looking for a bit of stability, and I think maybe having someone to love me is it. You can’t control life so maybe you can just date and control that, but you can’t control that either.”

I’m happily married now, but Wafa’a’s words cut to the core of my four years of being single and slogging through cancer alone. Not only was I lonely, but I was seriously scrimping to pay my medical bills. I’ve never been spendy but my pasta and rice routine was a drag; I hadn’t been in a restaurant in months and was craving a little cancer luxury to quell my cancer solitude.

I met a really sweet guy who was way too old for me (50!). “Just one date,” he pleaded. He knew about my cancer and how hard it was financially, so I made a deal. “One date only: You wine and dine me. I’ll be your arm candy, and give you one kiss.” Agreed.

It felt like prom or New Year’s Eve, taking a long bath and trying on outfits before our date. He took me to a small, expensive French restaurant. We ate quail eggs, salty lardon, savory Foie Gras bread pudding (sorry PETA readers), and quince tart. He was boring and a bad kisser. But I didn’t care. It was only temporary; I knew I’d resume the world of (semi)-normal dating after that evening. Some might find it depressing or disrespectable, but to me, it felt like a glimmer of hope, a chance to get out of my garden apartment, eat decadent food, and join the living.

Have you ever been single with cancer or while managing another kind of illness? What was hardest about it for you? Did you daydream about your life being different? Lastly, cast your honest vote: On my date, was I a tramp or a princess? Would you ever consider doing the same, or have you?

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April 09, 2009

Catch Me in Pittsburgh and More…

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A few years ago I met a Hodgkin’s patient in his art studio in a semi-vacant floor of a university lecture hall. He made sculptures: incredible little models of buildings and sleek sound and light pieces. Rick Gribenas’ mind was intricate too – he excelled at looking at cancer from unusual perspectives that went against the grain in thoughtful and subtle ways. His quotes about survival, statistics, and the labor of cancer are studded throughout my book. Also check out his eloquent words about cancer and the war analogy.

On the Pittsburgh leg of my book tour, I will be attending and speaking at an event in honor of Rick Gribenas . To my recent shock, I learned that Rick died less than a month ago. This benefit originally intended to support his medical bills will now be a celebration of his life and donations will go directly to his wife Charissa to help with medical and funeral costs.

It is easy for us in the cancer community to celebrate life, but how do we celebrate someone after they have died? I think we shy away from this a bit, as it is hard to be reminded of our own mortality when we are in the think of cancer ourselves. I believe we need to challenge ourselves to think beyond our own circumstances and to support the families of young cancer patients who are coping with loss. I hope you’ll join me in doing this and have a hell of a lot of fun while we are at it!

Saturday, April 11

6 pm going late
Modern Formations Gallery
4919 Penn Ave., Garfield
Music ranging from acoustic indie-pop to melodic punk
Donation $5 to $15 to benefit his family


Have you been close to a young adult cancer patient who has died? What was it like for you? How did their other friends, family, and colleagues respond to their death? If you live near Pittsburgh, can I count on seeing you on Saturday night?

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April 08, 2009

Kairol At the Capitol

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I am blogging from my parent’s house.  Tonight is Passover in Pittsburgh, a welcome pit stop on my whirlwind book tour, which included not only cancer conferences, book bashes, and benefits for young adult cancer, but also the Capitol.

I slide my book across the desks of Senators and Representatives, saying to their legislative aides: “The survival rates for adolescent and young adult cancer patients have not budged since Nixon declared war on cancer in 1971. We have abysmal access to health insurance and clinical trials. And we’re not gonna take it any more…” (Cue the Twisted Sister.)

I’ll soon debrief you on my extremely successful congressional meetings, nagging you with concrete tasks that you and your family and friends need to take to make legislative change for young adult cancer survivors.

But first, I want you to see that any one of us can try to make a big change. I have no legislative expertise. I’d never before met with congressional staff. Yet I sauntered up to Congress and gave them a polite, constructive piece of my mind. I’m tired of complaining about what is wrong with health care, and I want to fix it. If I can do it….. so can you!

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Karate chopping cancer outside of Senator Kay Bailey Hutchinson’s office

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You can pick your friends, and you can pick your nose, but did you know that at the Capitol you can pick Abe Lincoln’s nose?

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Did you know that Senator Kennedy is a huge proponent of funding for research on rare and ultra rare cancers?  Pretty cool.

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You don’t need a fancy political science background to take the bull by the horns.

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Bulls come in many shapes and sizes.

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April 04, 2009

Listen Up

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I’m Too Young For This Boston

I keynoted at a great conference today in Boston and focused my talk on finding strength through having a realistic attitude and allowing yourself to feel vulnerable from time to time in the midst of our cancer messes. We laughed, we cried, but we did not sing cumbaya. I met some amazing young adults, including a long awaited face-to-face meeting with Chemopalooza (aka Kelly). And we sold a slew of copies of Everything Changes!

Check Out These Two Radio Shows For
Young Adult Cancer Awareness Week:

The Group Room
I’ll be co-hosting with Selma Schimmel
Sunday, April 5, 4-6 EST
2 hours of young adult interviews including Heidi Adams from Planet Cancer and Matthew Zachary from the I’m Too Young For This Foundation.

The Stupid Cancer Show
In case you didn’t get enough of me, Matthew, and Heidi on Sunday PM, tune in to the Stupid Cancer Show for more banter and provocative talk about young adult cancer.
Monday, April 6, 9-10 pm EST

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April 03, 2009

Cancer Music Therapy?

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Self-touted Musical Pharmacologist, Vera Brandes believes that music has healing, maybe even curative powers, and she’s designing clinical trials to prove her point.  In her practice a patient would receive a diagnosis, be given music specifically composed for that ailment (she says that listening to music you are familiar with doesn’t work), and prescribed a listening regimen. While it sounds far fetched to me, there is no denying it would be vastly more pleasant than chemo.

Even if music does not have the power to cure, it can transport and put into sound what often cannot be said in words.

You may know Matthew Zachary as the founder of the I’m Too Young For This Foundation, but how many of you knew he was on the track to becoming a concert pianist before he was diagnosed with brain cancer at 21?

Numbness in his left hand was the first symptom. Throughout his treatment, Matthew composed music in his mind.  (I can relate to this quite well because I choreograph dances in my head non-stop.)  After surgery and debilitating radiation treatment, he began using his hand again.  Although his hand never returned to its pre-cancer mobility, he went on to record three albums, two of which related to his cancer experience.

After a ten year break, Matthew is playing a solo concert in New York on April 11.  Matthew says, “Playing music is cathartic, an emotional release, a steam valve.  It improves the quality of my life and helps me re-anchor to my first true passion.  But I don’t mean to be therapeutic – if that is what the audience gets out of it for themselves that is fine.  To me playing music shows that everyone has the potential to get what they want out of life given the crap they are dealt.”

Has your cancer diagnosis, or another illness ever interrupted a creative part of your life?  Have you returned to it?  Do you find art to be healing?  Do you ever consider it to be your medicine?

Seating is limited for Matthew’s concert.  Reserve your tickets here.

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April 02, 2009

Crying After Good News

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Weight of the Wait
I got good news from my doctor last week. My tumors are stable. Amen. They didn’t shrink, which sucks, but I wasn’t exactly expecting them to either. So it wasn’t spectacular news, it wasn’t horrible news. It was good news.

So why later that night, laying in my bed at Miracle House, did I bust out crying, sobbing like a baby. Yes, I was watching the cheesy movie I Am Sam where hottie Sean Penn plays a developmentally disabled Starbucks worker. And, I’m sure I had a tinge of PMS too. But it was a lot more than that. It was the weight of the wait flooding out of me.

Mack Truck
I’ve come up with some pretty great ways to tame my worry while waiting for check ups. But regardless of how adept I’ve become at distraction, curbing anxiety, and processing reality, there will always be a nugget of tightly wound fear that I store away in some inaccessible reach of my heart while I count down the days on my calendar. It doesn’t matter if the news from my doc is simply fantastic – waiting wears me down.

The night after an appointment I feel run over by a Mac truck. It is such a contrast to the world around me. Family and friends might feel the relief that my wait is over; they have news, be it great, just okay, or even bad. But for me, this afterwords time is when my real sadness crawls out of the fox hole and I have one of those good sulky cries that sometimes doesn’t even make a sound.

How do you respond to going to the doctor? What happens to you after the wait is over? When your news is good, are you able to start the celebration right away or do you have some lag time? This post was written with Abby in mind, whose been waiting the hard wait for her doctor’s appointment today. Thinking of you my dear!

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March 31, 2009

Get a Hold of Yourself

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I was on myplanet today and read a member’s status “I am trying to get a hold of myself.” I think we can all relate to this if we are dealing with a cancer diagnosis, chemo, radiation, waiting and watching, or another illness, or any kind of life fiasco, such as unemployment.

I spent two days on the Yakama Reservation with young adult cancer survivor Holly Anna DeCoteau Pinkham. (Some of you know her from Planet Cancer and LAF too.) I included the juiciest parts of our conversation in my book. Here is piece of HollyAnna wisdom that really stands out to me when I think about getting a hold of my life:

“Sometimes when I’m starting to crash, I go to the mountains and watch the water. Water doesn’t fight its way down the hill. It takes the path of least resistance. Still, there are rocks in the water, and that is how I look at cancer. It’s a rock. I’ll go around it, over it, under it if I can. I’m not going to fight it. Instead, I’ll let it figure out how it is going to guide my path. You have to figure out how to work with the momentum cancer establishes in your life. Otherwise, you’ll drive yourself nuts. So I have to go up to the mountains, and I remind myself that I’m like the water.”

“Fight” has become the mantra of the cancer world. I love that HollyAnna steps out of the boxing ring and ditches the “fight” while remaining an empowered, intelligent, and all together kick-ass patient.

Where do you go when you need to get a hold of yourself? (I love being a big imposing library, getting lost in it all.) What centers you or calms you? Do you have metaphors like Holly Anna’s water that get you through? Have you ever thought about not fighting? Does that scare you or give you more energy?

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March 30, 2009

Boston: Me and You on Saturday

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This Saturday in Boston, I am going to try to be verbal with a room full of folks at 8:30 AM. It could be dangerous, says my inner night owl.  I’ll be talking about the lessons I learned while traipsing across the United States interviewing young adult cancer survivors for my book Everything Changes.

I’m  keynoting a great young adult cancer conference called I’m Too Young For This. (A hauntingly familiar name, no?) There are still a few slots left for registration at youngcancerconference.org. The conference is free and is going to be a blast. Break out sessions will include juicy YA topics like singles and cancer, nutrition, mindfulness, caring for the caregiver.

If you cannot make it to the conference, but are around that evening, Matthew Zachary is arranging an i2y Boston Cancer Happy Hour. I don’t have the 411 at the moment to post the details, but if you are interested, shoot me an email: kairol[at]mac dot com and I’ll get you the info. ASAP.

Saturday | April 4, 2009
8:30 am – 3:00 pm
(breakfast & lunch provided)
The Conference Center of the Carl J. and Ruth Shapiro Cardiovascular Center at Brigham and Woman’s Hospital
75 Francis Street, Boston MA 02115

Register:
youngcancerconference.org

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