December 02, 2008

Sex and Cancer

Cancer may no longer be the C word, but ‘sex and cancer’ is still a barely audible, whispered topic. Docs keep their traps shut about sex and cancer as though they are mortified substitute teachers covering a sex ed. class and telling students to use the period to do their own homework.

I’ve spent five years traversing the country talking to twenty and thirty-something cancer patients. And while none of us had prostate cancer, many of us- men and women – suffered from lowered libido as treatment and surgery side effects. I also interviewed sex therapist Sage Bolte. I call her the Dr. Sue of the cancer world, and her graphic remedies and practical solutions are in my book.

Dana Jennings wrote After Cancer, The Echo of Desire in today’s New York Times Well-Blog. I want you to forget the fact that he is a 51-year-old prostate cancer patient. Substitute the word wife for boyfriend or girlfriend if you need to. Mad-lib up his writing to fit your own situation; his words could have come from the mouth of any testicular, lymphoma, or other kind of young adult patient with cancer. Here’s an excerpt:

“But, if there’s one thing you learn from prostate cancer, sexuality is not sex, a fine point that our over-sexed mass culture has managed to blur, if not obliterate. I still want to hold my wife’s hand and snuggle. And I’d be only too happy to carry her books home from school.

“So, whether you’re in the wistful grip of Lupron, or the throes of desire, I’ve realized that how well you cope with the after-effects of prostate cancer treatment boils down to how you want to define yourself as a man.

If you’re the kind of strutting rooster who grades himself solely on muscle mass, sexual gymnastics and the size of your Hummer, prostate cancer will send you spiraling into deep despair. If you treat this disease like a war, you’ll find yourself in a quagmire of depression that will get worse before it gets better.

“As much as I savor, and ache for, the robust life — having once been as fit, randy and Guinness-loving as any rugby player — prostate cancer and its treatment have imposed on me a certain necessary asceticism. “I’m more content to cocoon at home — curled up on the couch in the den like a woolly-bear caterpillar — with family, good friends, books and music. I drink less. And now, sex is temporarily fading. It often feels as if I’m somehow being purified in a crucible of cancer.

“That said, the mind still pants and leers, says, ‘Yeah, sex would be really, really nice.’ But with less testosterone, without that hopped-up, hormone-injected V8 engine, the body gets distracted. Then the mind wanders. And instead of sex, I suddenly crave a Reese’s peanut butter cup, or pine to listen to the jazz trumpeter Lee Morgan slow-blues his way through “I Remember Clifford.” Or I want to watch Daffy Duck and Porky Pig lisp, stutter and sputter through “Duck Dodgers in the 24-1/2th Century.”

“So, yeah, my libido has pretty much run away from home. But my doctors tell me that it’ll ramble back some old day — the prodigal libido — once treatment ends. And I trust them.

“Meanwhile, wherever my sex drive has gotten to, I hope it’s having a damned good time.”

Have you ever spoken with your docs about cancer and sex? Did you, the young adult cancer patient, have to bring it up or did they? Were they able to answer your questions? Did the answers seem targeted to your age?

For more sex and cancer posts see Survey says…S-E-X!

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December 01, 2008

Green Goes With Everything

Cancer is dramatic enough. When it comes to my body and the environment, I want the least amount of enviro-paranoia and vegan-girl-scout-pep-rallying as possible. That is exactly what I like about Sloan Barnett’s new book Green Goes With Everything.

The Pros
In this basic primer on becoming a green consumer, Sloan is no Julia Butterfly and doesn’t expect you to be one either. She present steps that help you phase into a greener life, and tosses in plenty of guilt-free phrases like “when possible.”

I don’t need much convincing to green my life; I am a young adult cancer patient and my husband is an attorney for the Natural Resources Defense Council. Still, simple tasks, like swapping out the carcinogenic plastics in my kitchen and buying glass food storage containers, have remained on my to-do list for two months. Sloan presents simple information from credible scientific sources. She motivated me to finally run to the store this past Friday and load up on Pyrex containers.

The Cons
Green Goes With Everything reads like a Scholastics fourth grade book and is packed with a plethora of infomercial-like pitches for Shaklee, an enviro-friendly household cleanser company owned by Sloan Barnett’s husband.

Sloan doesn’t do the math to back up her numerous claims that her enviro-solutions are affordable for everyday people. It is hard for me to just take her word on it: Two years ago I read about Sloan in an Earth Day article in the Style Section the New York Times. She was hosting a “Tupperware-style” Shaklee house party in her Upper East Side mansion with a guest list including Rockefeller, Hermes, and Trump. My math and their math have a different bottom line.

Green Goes With Everything paints participation in environmental policy making as a hippy, street-corner rally, discrediting the change that we can make as concerned citizens. Fact is, if we all became more active in effectively petitioning government entities to regulate carcinogenic materials, you and I would not need to work so hard to detox our living spaces. That’s not radical. It’s smart.

The Verdict
Read this book. Despite some pitfalls, this sensible, practical guide will help you make healthier choices about the food, air, water, and energy that are in your home. I have signed off on pages of yellow disclaimer slips in the hospital acknowledging that the very treatments that are used to try to cure me may cause secondary cancers. The tips in Sloan’s book may help me lower those odds.

Have you made any simple changes lately to detoxify your home? What were they?

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November 29, 2008

The Aviatrix

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?

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November 27, 2008

Thanksgiving Whole Paycheck

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, 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!

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November 26, 2008

The Mean Cancer Bloggers

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?)

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November 24, 2008

The Nice Cancer Bloggers

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.


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.

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November 21, 2008

The Cancer Patient or The Smoker

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.

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November 20, 2008

Wanna Be In Pictures?

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 ( 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?

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November 19, 2008

Cancer and Self Identity

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:

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?

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November 18, 2008

Physical Activity and Quality of Life

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:

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.

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