Everything Changes - The Guide to Young Adult Cancer

What do you get when you cross Kris Carr’s documentary Crazy Sexy Cancer, Marisa Marchetto’s graphic novel Cancer Vixen, and throw in a dash of David Lynch’s film The Straight Story? Watch and find out.

Curious to know your take on the cigarette factor. Is it a nice touch of young adult cancer realism or do you want to flick that carcinogenic smoke stack out of her twenty-something hand and ask the filmmaker what the hell they were thinking?

I want to be reasonable
During the last eight years – plus a few more before I was even diagnosed with cancer - I’ve traveled all over the map of holistic health (though I’ve made sure to steer clear of shoving coffee grounds up my ass.) The final upshot of all this quack-sifting-soul-searching-alternative-seeking-cancer-questing is that in the end, I want to be reasonable. I know, reasonable is so boring, no pizzazz, no glam, but cancer made me do it. Cancer made me a more rational human being. So what does reasonable actually look like in the health and diet department?

I have chosen to reduce my overall meat intake and limit it to only organic meat. That is fine, but the emotional impact is killing me: My mom has schlepped around Pittsburgh for the last week in search of an organic turkey. This is the woman who helped me wheel my IV pole to the bathroom, who slept on a dumpster dived futon on my floor during treatment, and now I’m making her haul ass all over town and dole out some serious cash for an organic turkey? The pilgrims might have had gratitude, the cancer community might have gratitude, and even though I am an American and I do have cancer, I’m a friggen Jew: It’s Thanksgiving and I’ve got guilt.

Organic turkey five-finger discount
Tara Parker-Pope wrote a piece this week in the New York Times Well-Blog about the cost of an organic thanksgiving. According to researchers at Smartmoney.com, an organic thanksgiving meal costs $100 more than a non-organic one. We are talking an organic 20 pound Turkey costing $99 instead of $23. Global financial fiasco looming in the air or not, it would likely take the guy working behind the meat counter at Whole Paycheck a two-day shift, after taxes, to buy his organic Thanksgiving turkey.

Maybe just maybe if you have a huge purse you could do an organic turkey five-finger discount, and there is always the option of panhandling outside the Whole Paycheck for some turkey-day change. But I’d rather not. It is easy to say eat organic meat, go green, be healthy. But many cancer patients cannot even afford to walk in the door of Whole Paycheck. Co-pays and prescriptions outweigh criminies and persimmons. In the alternative medicine world, and in the scientific research world, it is easy to package up hope in the form of a potential cure, but in the long run if nobody can afford it, well, what’s the point?

Nancy Rosenthal rocks
My mom is having 15 people over for thanksgiving. Half of them will feast on a 10 lb regular turkey and suffer the chemical consequences, while the other half of us will feast on a 10 lb organic turkey that she ended up buying, yes, at Whole Paycheck. So maybe it isn’t cancer after all that made me a reasonable person. It was probably my amazing Jewish mother.

I think being thankful on Thanksgiving or because you have cancer is entirely overrated, and border line pathetic. I think people should be grateful regardless of the day on the calendar or their disease status. Cancer or no cancer, Thanksgiving or not, what would I do without my mom? She’s the best!

Over the last 24-hours a story has spread like wildfire through the young adult cancer community. An article in the San Antonio Express-News describes the abysmal accommodations of 21-year-old Airman Basic Joseph Weston, who was diagnosed with cancer three weeks into boot camp, and his struggles to obtain medical dismissal and medical retirement.

I recently wrote a post entitled The Nice Cancer Bloggers, describing how I wish readers would don the boxing gloves in comment sections of cancer blogs instead of being so nice all the time. WELL HERE IT IS! I ache for this patient’s struggle, but I truly appreciate the dialogue that this article has sparked. In the comment section following the article, opinions are stated without worrying about offending other readers who are cancer patients. Have a read. I promise you will get fired up too.

So who is the bad guy here? The soldier? Uncle Sam? I believe it is the reporter, Sig Chirstenson, whose wrenching story is riddled with holes and one-sided information. Nothing is as black and white as he makes it out to be. We don’t know what the soldier’s other options are and what the military protocol and precedent is for these instances. The writer does a disservice to the soldier by framing his story as a heart tugging, impassioned cry for help, instead of showing this as an issue of policy mayhem and a need for real problem solving.
This outrageous story incites a call to action; a stronger story from a larger news outlet that can do some real investigative reporting.

What is your take on this story? How do you view the reporter, the soldier, and the military’s position? Do you agree that the reporter paints a biased picture and that he sensationalizes a story that is so horrific it needs no added drama (the lightening bolts?)

The State We’re In, a great pubic radio program, asked me to write the following piece, about cancer blogging, titled The Nice Cancer Bloggers. You can read the piece below and click here to listen to the podcast. I’m curious to know: when you comment on a cancer blog do you find yourself being more polite or sensitive than if you were commenting on any other kind of blog?

Reaching for a box of cereal in the supermarket, I notice a woman a few feet away mulling over energy bars. She looks to be about my age: late 20′s or early 30′s. And she’s bald - no eyelashes, no eyebrows, dressed in navy sweats. The nervous banter starts in my head.

Do I just walk up to her and start talking - tell her that I have cancer too? Would I be invading her privacy? What if she’s never talked to anyone her age with cancer and would be grateful to connect with me? It’s like I’m trying to decide whether or not to hit on someone in a bar. In the end, I grab my Cheerios and head down the aisle - without talking to her. If she wants to, she can find me online.

Diary-like detail
As a young adult cancer blogger I use my blog, Everything Changes, to connect with other 20 and 30-something cancer patients. We are the stray dogs of the cancer world. While older cancer patients huddle on couches sharing symptoms and swapping life stories in support groups, we’re the odd ones out.

A handful of young adult support groups exist in major cities, but for the other one-million plus of us, we connect by blogging. Most young adult cancer patients blog about their personal experiences in diary-like detail, updating their friends and family, complaining about nurses, and outing incompetent doctors. I’m more interested in writing about how politics, policies and our own cultural norms affect the quality of our lives, and ultimately how they alter our life expectancy. I’ve always been an opinionated person and blogging is the perfect platform for me to get some dialogue going about what’s unfair in the health care system and how to create change in the world of cancer care.

Cyber stalking

I’ve heard that bloggers can be targets of ridicule, backlash commenting, and cyber stalking - but I’ve never experienced this first hand. And I don’t know of any other cancer bloggers who have. Somewhere there must be a fellow blogger who dares to bash a cancer patient, but I have yet to experience them. In fact, even when commenters disagree with me, they go out of their way to sound kind and constructive. They write long, apologetic disclaimers noting they’re merely stating their own opinion and they understand my perspective too. They’re all just so… nice.

But all of these niceties sometimes feel excessive. It’s like having cancer commands people to use a playbook from a non-violent communication course. Sometimes I wish commenters would just don the boxing gloves and go at it with me full force. So the down side of my blogging doesn’t come in the form of stalkers, or nasty commenters. And as frustrating as it sometimes is, I wouldn’t say the downside is excessive niceness, either. Instead, it comes in the form of silence.

Maybe….

When someone who identifies themselves only as a noun and their birth year - immortality74, cancermama68 - drops off the face of the blogsphere, you never know why. Maybe they had a great checkup, were told they are in remission, and no longer need the support that blogging once brought them. Maybe they are at a PTA meeting or back at work - or, maybe despite their missing body parts and lack of hair they picked up a boyfriend or girlfriend and are spending time texting and on dates instead of hanging out on cancer blogs. Or maybe their health took a turn for the worse, and they’re back in the hospital for in-patient chemo or a stem cell transplant. Maybe they’ve moved on to hospice. Maybe they’ve died.

Seeking connection

Perhaps in the end, this is why people are so kind to us, why we’re such a nice bunch of cancer bloggers. Because we never know which of us is actually going to make it. When you’re in your twenties and thirties and staring death in the face, you may have time for online distraction - but you don’t have much energy for online drama. For us cancer bloggers, our online connections are more than about blowing off impassioned verbal steam in our own daily entries. Cancer bloggers are people who seek connection in order to thrive. And we’re desperate enough for it that we might start a blog - or we might walk up and talk to each other as complete strangers in the cereal aisle at the supermarket.

She’s a very nice woman. So I’ll blur her identity. Create a pseudonym for her TV show. And get to the meat of the barbecue matter.

I got an email yesterday from a producer (we’ll call her Cassy) of a pilot (we’ll call it Outrageous Outdoors) that will air on a major TV network. So sweet of her to help me publicize my book by making the following offer: Cassy asked me to host an episode where I find a breast cancer patient with a really crappy backyard and surprise her on camera with an outdoor makeover, working with “the big green egg people” to paint the big green egg pink.

Big green egg people? I had no idea what she was talking about. I googled it. The big green egg is a very dinosaur like patio-grilling, meat-smoking machine. I was not quite sure which object was the product placement in this episode: the cancer patient or the smoker?

I had more questions: Is it ethical to out someone on TV as a cancer patient without asking their permission first? My answer: No. Does Cassie care if the patient is not in remission, if they have in-home hospice, are gaunt, pallid, frail, and might not make it to spring to actually use the backyard bistro? Cassie’s answer: Wow, how bittersweet, we’d love to help someone like that. And what about health concerns? I’m no Lola-Granola, but even research from the straight-laced, government funded National Cancer Institute shows links between barbecuing and cancer. Heterocyclic amines (HCAs) are the carcinogenic chemicals formed when barbecuing animal proteins.

I declined the offer. As I snickered at the absurdity and outrage of using cancer patients as the tokens recipients of backyard glitz and glamour, I realized the hypocrisy of my sneer. When I was diagnosed at 27, I dashed off letters to Mac and Sony, portraying myself with the right combo of cancer hip and patient pathetic in hopes of scoring a free laptop or video camera. How can these mega corporations with deep pockets deny a young cancer patient? With a nice little rejection form letter, that’s how. Apparently I wasn’t the only one asking.

So as my last post of Everybody Wants You Week, I ask you:

If a patient ever uses the “cancer card” to get something – gym memberships, video cameras, the ability to use our flashers at the curb instead of parking in the lot – why can’t others use our cancer card to get something too? Is it a fair trade? Is one gifting and the other exploitation? If everybody wants you with a profit motif in mind, is there still a win-win component to it that makes the whole deal kosher? Does this change if the product is carcinogenic, like Estee Lauder products that include ingredients linked to cancer? Or a big green egg? Let me know what you think.

As I clacked away at my computer today, photographer Andrew Young set up big, umbrella-like lighting devices and shot pictures of me at work. He is creating a book of photos of and essays by cancer survivors. It was about as close as I will ever get to pretending that I am on America’s Next Top Model. If this sounds like fun to you, meet Bill Aron.

Bill is 67. He is a prostate cancer survivor and another professional photographer seeking survivors to shoot for his new book Beyond Cancer. Bill had a disease that not many young adults have, and is writing a book that is not specifically about young adults. So why am I sharing with you his request?

Because he actually cares about young adult cancer and not many people do. Not many books, organizations, or cancer services take a step back, look at the big picture and say, “Gee, there’s a black hole were 20 and 30-something cancer patients should be represented.” I love that Bill gets it. I love that he wants us in his book. If you are interested in participating, contact Bill (bill@billaron.com). He lives in Southern California, but will be traveling as part of the project.

This week is Everybody Wants You Week on my blog. If you are a patient, what does it feel like to have people soliciting you for studies, interviews, photographs? Does it feel like a great opportunity to shine, to use your experiences for good? Or, are you tired of feeling like a creature on display?

What the hell do sociologists do anyway? This one studies the lives of cancer patients: Kelly Adams, a senior at Kenyon College is writing her thesis on the ways in which cancer patients incorporate their experiences with cancer into their new identities as survivors.

Sound heady? Well it is not. I sat down with her interview questionnaire this weekend and her questions cut straight to the core of my cancer experience. An hour of tackling her provocative questions was like a free therapy session, minus a kooky lady sitting across from me staring at one of four strategically placed clocks.

Kelly became interested in this subject matter while working at the Dana Farber Cancer Institute in Boston in the Lance Armstrong Foundation Adult Survivorship Clinic and the David B. Perini Jr., Quality of Life Clinic for Childhood Cancer Survivors. I’m excited to see where her work leads her next. If you are interested in getting in on the action, contact her to see if you would be a good match for her study: adamska@kenyon.edu

As part of Everybody Want You Week on my blog, I’m curious to know if you enjoy participating in these kinds of research studies as much as I do or would you rather keep your cancer experience a more private matter?

Caitlin Love’s best friend was diagnosed with non-Hodgkin’s Lymphoma when they were fourteen. For the last ten years, Caitlin watched her friend struggle with the emotional effects of this traumatic experience. She now has the hunch that with better follow up treatment, her friend’s negative effects could have been minimized, greatly improving her quality of life.

Talk about BFF: Now working on an M.A. in Exercise and Health Psychology at McGill, Caitlin, 24, is studying how exercise and physical activity can be used to improve the physical and emotional health of young adults with cancer.

We are always kvetching that researchers never give a damn about young adults with cancer: well now somebody does. Help Caitlin by answering an online survey. She is seeking those of you who have completed treatment for cancer within the last five years and are between 18-39 years of age. The survey can be accessed at: http://hbe.mcgill.ca/research.htm

I’ve declared this Everybody Wants You Week on my Everything Changes blog. Throughout the week I will post opportunities that show just how many researchers are barking up your tree for your cancer stories and experiences. If you know of other calls for survivors to participate in surveys and research, send them my way and I’ll post them here.

This week CNN featured a letter from Lance Armstrong to President-Elect Obama. The gist: we need to strengthen the fight against cancer through creating national coordination, increasing National Cancer Institute funding, investing in prevention and screening, and ramping up support services.

As one of the 70,000 young adults diagnosed with cancer in the United States each year, I strongly support Lance’s call to action. But the most important issue is not mentioned: health insurance. Coordination, research, screenings and support are lost if Americans do not have access to the fruits of these labors. Cancer patients cannot livestrong without quality, affordable health insurance.

When I was diagnosed with cancer at age 27, I had no health insurance. I am not alone. 13.7 million young adults are uninsured. This means that when we have cancer, we get diagnosed at later, more advanced stages. This is a key reason why over the past 30-years ped and older adults have seen a steady increase in survival rates while 20 and 30-something survivors have seen no improvement at all, and our survival rates are starting to decline. I agree with the President of the American Cancer Society who affirms that in order to save lives, the fight for health insurance and our search for the cure must go hand in hand.

Our role as empowered 20 and 30-something citizens did not end when we left the polls, or when Obama was announced as the next President. We must continue to be savvy and place targeted pressure on this new administration to make a change in cancer. We must never forget that the most incredible breakthroughs in cancer mean zilch if we cannot gain access to them.

Have a read of Lance’s letter. What is your response to it? What would you write in a letter to Obama about your cancer?

I have a hard enough time trying to explain my cancer to my friends and family; I cannot imagine having to explain my illness to rug rats and knee bitters too.

Even though I don’t have kids, I’m big on sharing good resources for parents with cancer. Some picture books about Mommy’s cancer seem a bit touchy-feely-creepy in a flashback to Mister Roger’s way (no offense Fred), but not so with the super vibrant book This Year, Last Year.

Author Kelley Corrigan and illustrator Nan Davenport created Last Year, This Year. Using images drawn by Kelly’s daughters, plus their handwriting, Nan blends her own original paintings and digital illustration with archival materials from Kelly’s cancer treatment. 100% of the proceeds go to Breastcancer.org.

Have you used books to explain your cancer to your kids? Were they helpful? Which ones did you like the best?