Everything Changes - The Guide to Young Adult Cancer

As a teenager I made out in abandoned factories, where mysterious steel drums leaked on the floors and industrial grime came in all colors and textures. I guess high schoolers in farm country drink Boonsebury and go cow tipping, but in Pittsburgh, we smoked pot on slag heaps.

Did growing up amid Pittsburgh’s steel town relics contributed to my cancer? And more importantly, how do I reducing my current exposure to carcinogens. This is the subject of my guest post featured yesterday on Blue Planet Green Living.

Survivors and healthy folks alike are focusing heavily on how to be more green, but going green is not just a consumer lifestyle trend; it is a public health issue that will never be solved one eco-purchase or CFL at a time.

Let’s face it, shopping for organic sheets at Bed Bath and Beyond is way more seductive than educating ourselves about coal fire power plants or vehicle emissions standards. But buying more crap – even if it is eco-organic crap still makes a negative impact on the environment. As young adult cancer patients, often with low incomes and medical debt, we are better off resisting most eco-marketing and buying less in general.

Indoor air quality is a major health issue and choices about the chemicals we eat and wear are important. But as a cancer patient, I’ve gotta look beyond my consumer habits and stop ignoring the big enviro-elephants. My eco lip gloss does not matter if toxic power plant emissions are drifting in the wind.

Do you think something in your environment when you were a kid caused your illness? Are eco-products affordable for your budget along side healthcare costs? How do you decide what to buy? Are you enticed by beautiful, hip, enviro marketing? Do you know what a coal fire power plant is? Is environmental policy interesting to you, a bore, does it matter?

“What’s the right way to thank friends for their help and to show my appreciation?,” asked Garnet, a survivor, in the comment section of my last post (Cancer and Friendship). Her question evoked the words of Richard Acker, a 36-year old stage 4 colon cancer patient in my book.

“When we receive help, it is clearly benefiting us, but it also gives some benefit to those who are helping us. They feel good, it makes them happy, it helps them to express their love for us in a concrete way.”

I agree and believe that when you receive help while you are ill, you don’t have to do anything other than say, “Thank you.”  I haven’t always followed this rule though.  Especially after treatment, when I made big thank you gestures - mostly in the form of dinner parties where I unleash my inner Barefoot Contessa.  My desire to thank came not only from my genuine gratitude, but also a bit from the guilt of feeling like I was an imposition, and a tad bit from shame that I needed help to being with.   Thank you gestures made the help I received into something reciprocal, which made me feel less like a sick cancer patient.

But I’ve come to think of that attitude and the need to do something thankful as bullshit.  Why?  Because I AM a young adult cancer patient and I WAS sick. This is not an equal, reciprocal exchange.  When we are down and out we need help.  When I graciously accept assistance without reciprocating, I am humbled and reminded of how helpless I am sometimes.  This is not a bad thing.  In my eyes, this is part of getting real with what it means to live with cancer.

When I do something for someone else in need I don’t do it because it makes me feel good or because I want something in return.  I do it because I love someone or care about helping to alleviate suffering in the world (that sounds kind highfalutin but it is true.)  When someone helps me, I hope this is also their motive.  Now, when I’m sick and need help, I simply show my gratitude by saying “Thank you,” it feels really right.

What is it like for you to accept help?  Do you ever feel guilty doing it?  Do you feel like you have to give back and do something?  Does it make you feel weak to accept help or does it empower you to recognize your limitations?  Have you ever done something for friends and family to thank them for helping you during an illness?

As young adult cancer survivors we big time need to kvetch about our friends who say stupid things to us (like: “In a way you are lucky you have cancer because now you don’t have to worry about whether you will getting it.”) But do we also spend enough time praising and gushing about our friends who totally understand us?

On Monday, Tara Parker-Pope referred to an article from the Journal of Clinical Oncology March 2006, which studied 3,000 nurses with breast cancer and showed: “Women without close relatives, friends, or living children had elevated risks of breast cancer mortality compared with those with the most social ties…. Neither participation in religious or community activities nor having a confidant was related to outcomes.”

When I was diagnosed, I sat on my bed and told my friend Nicole.  She shed all pretense and sat and cried with me.  It was the best response to my cancer I ever had.

During my treatment, Rachel, a casual acquaintance, adamantly wanted to help me with my mounting housework. A busy woman, she multitasked and on a first date brought the guy with her to my apartment to wash dishes. She threw a dishtowel at him and told him to dry.  They were not together long,  but she and are now close friends.

My friend Heather is amazing. Once when I was having a weird cancer period, she let me show her my used pad so we could talk about the color of the blood. Friends don’t get better than that.

Lifting loads of laundry to keep our staples intact, scrutinizing doctors for us, letting us cry into the phone so we can sleep better at night and fight our fatigue. This is what good friends do. I don’t know if in every instance friends help reduce our mortality rate, but the good ones sure as hell can improve our quality of life.

What great things have your friends done for you during an illness? Who has made you feel less lonely, more loved? (Do I sound like Delilah yet?) Who is by your side when your health is grizzly and you are freaking out? Has your support ever come from unlikely friends, or people who you weren’t that close to before cancer?

I write, talk, and debate a lot about when as young adult cancer survivors we should reveal our illness to a date.  But what happens when we don’t even get to tell someone about our cancer because the grapevine beat us to it?

When I lived in San Francisco, some friends joked that I was The Dancer with Cancer.  It was news on the street among my extended social circle, and often I didn’t mind because many people who heard offered me help that I really needed: rides to doctors appointments, help with laundry.

There is a power to being about to decide to whom and when we reveal our illness, especially when it comes to dating.  Take  Sheila in Everything Changes who was extremely private - not even  disclosing cancer to her close friends.   On the other hand, Dana, also in my book, was relieved that when she and her husband began dating, he already knew that she had cancer.

In today’s New York Times Well Blog, Tara Parker-Pope interviews Trisha Meili, the Central Park jogger, who 20 years ago today was raped and brutally attached at age 28, resulting in brain injury.

“I met my husband on a blind date in 1995. A woman I had gone to college with knew him. I told her, ‘do me a favor, don’t tell him my history. That’s my story and I want to be able to tell it if I want to.’ In talking to him before we met, I had told him I went to Yale business school and the school of management. He mentioned it to a friend who had also attended Yale. She said, ‘You know who that is, don’t you?’ And she told him. In the end, it didn’t matter, but there was a little bit of that feeling, ‘Hey, that’s my story.’ The media keeping my anonymity is something that I do appreciate. I was known as the Central Park jogger, and when I told my story it was my choice. That was a degree of control that I had completely lost with the attack and the rape. When I’d meet someone it’s not like I would say, ‘Hi, I’m the Central Park jogger.’ It’s kind of a conversation stopper.”

Have you ever had someone find out about your cancer or another illness without you telling them?  Were you glad that they already knew, or would you have rather told them yourself?  In your circle of friends, among co-workers, in your family, did your cancer news spread like wildfire? Did you have a control valve that let you determine who knew?  If you could go back, would you do anything differently about disclosing your cancer?

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?

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?

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?

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?

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!

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

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?

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

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

Bulls come in many shapes and sizes.

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