September 10, 2008

Mad Lib For Quacks

SU2Q. Part of Standing Up to Cancer is Standing Up To Quacks too. You know the kind. Carrots cured my cancer, you should try it too. These types of stories are harmless when kept to themselves, but when shared with the general cancer community, I consider them a public health hazard.

On September 5, ABC.com began an on-going blog series by a woman who called herself Joyce, who was sharing the blow-by-blow of how she denounced chemotherapy and headed to a quack in Scottsdale, AZ for treatment instead. I’d give you a link to her laughable blog, in all its vagueness and holy-rollering, but I cannot. I, along with a slew of other readers, posted a thoughtful response and ABC has eliminated any trace of its existence from the Internet.

Next time you run across some cancer quackery that makes your blood boil, feel free to copy and send my letter below, switching out the particulars ala Mad Lib style to make it your own.

Dear Joyce,

I am thrilled for you that your treatments are progressing so well. I am, however, startled that a national, authoritative news source such as ABC would venture into alternative cancer treatment with an anecdotal story series that provides no research, no mention of evidence based alternative therapies, and a poor, oversimplified understanding of the relationship between traditional and alternative medicine.

I am a proponent of first person storytelling (and in fact have written a book based on first person narratives of young adult cancer patients), but your story is a Pandora’s box. The goal of first person storytelling should be to educate the reader. Instead, this tissue paper thin journal entry only serves to confuse patients who may be searching for vetted, substantial alternative medicine information.

I shudder to think that this series may convince patients to follow in the footsteps of your writing by making quick, uninformed, gut level decisions about their cancer care, urging patients to forgo treatments that have greatly contributed to boosting cancer survival rates over the past 30 years. When you have cancer, education is not just power; it is what keeps you alive. I know, I have been living with cancer for 8 years and receive outstanding care from both traditional and complimentary care doctors.

Sincerely,

Kairol Rosenthal

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September 08, 2008

Crazy Complicated Sex Life

On the back cover of yesterday’s New York Times Magazine was an add that read in 26 point font: PROSTATE CANCER SURGERY SO EFFECTIVE, EVEN WOMEN CAN FEEL THE DIFFERENCE. In smaller print it spoke of a new surgical procedure performed at Mount Sinai that results in fewer cases of prostatectomies leading to impotence.

From surgical procedures, to attitudes that empower women to pull ourselves up by our high-heeled bootstraps, I’m not sure how I feel about using sex to sell cancer recovery. On one hand, cancer and sex is a rather hush-hush subject, so perhaps it is good that we are even talking about it. But in what ways are we cracking out, dusting off, and dressing up our attitudes and images about cancer and sex?

It’s great to boost cancer empowerment through a sassy, act hot feel better attitude. Believe me, I’ve have days wherein slapping on a coat of lipstick and CFM heels, cranking up Erasure, and dancing around my apartment has given me a much needed jolt. But beyond private (or public) lipstick n’ high heeled carnival moments with our inner cancer divas, and beneath Vogue stories featuring models and actresses with cancer (who had the running start advantage of being drop-dead gorgeous before diagnosis), cancer and sex is not always so sexy – for women or men.

Tell me why I never see the glossy, sexy photos of a 24 year-old-woman, standing at 5’2 and weighing in at 198 from steroid treatment weight gain. Tell me why I never see the flick about the 35 year-old-woman post bone marrow transplant whose vaginal canal shrunk because of graft versus host disease. Tell me why I never read books about the twenty-two year old guy who cannot get an erection after his gazillion rounds of radiation treatment for brain cancer.

I’ll tell you why: because like it or not, the real deal cancer ain’t so sexy.

So all you bloggers, writers, authors, journalists, designers, satirists, filmmakers, ad moguls, and cause-related marketing gurus, if you are going to bring sex out into the cancer arena, do us a favor and drag out the REAL TABOO: start talking about the crazy complicated sex lives of young adult cancer patients. Talk about what it means when you finally land a guy in your bed but realize you cannot even stand to have your body touched because your skin is crawling with the post-traumatic stress of being poked and prodded by strangers.

Now hear this, memoirists, major network media, the cancer powers that be: the next time you haul sex and cancer out into the day light, try including the truth of when we feel like shit because our breasts are missing, our penises aren’t hard, we feel fat and ugly, or work-camp thin and gaunt, we don’t want to go shopping because we don’t have the money and cannot stand to look in the dressing room mirror, and the quick-fix prescriptive of self-empowered girl language or kick-ass guy attitude just doesn’t work. I’m excited to share with you some of this read deal conversation in my book, which will be out in the new year. But until then…

What are some of your stories of relating to cancer and sex?
Also, have you ever felt a disconnect between the way sexual empowerment is presented in books or media and how you actually feel about your body or your sex life?

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September 08, 2008

Show Us The Money

‘Obama vs. McCain: Where Do They Stand On Cancer?’ was posted by the Lance Armstrong Foundation on livestrongblog.org. The posting included links to position papers on cancer from both the Obama and McCain campaigns. Both candidates tug on the heart-strings of what cancer has meant in their lives, outline bills they have voted for, and dress up their healthcare intentions in broad, pleasing language.

Personally I don’t care who showed up at what cancer rally, or even what their cancer policy intentions are. No candidate is ever going to say they won’t fund an increase in the National Cancer Institute. But, just because a candidate says they are going to fund cancer research does not mean they will lead our country towards the fiscal position to do so.

Additionally, according to the American Cancer Society, just as many cancer deaths in the U.S. are due to lack of access to health care as are due to lack of scientific breakthroughs. I believe fixing the insurance crisis is the number one way to increase cancer survival rates. It is impossible to detach the insurance crisis from economics, so we must look beyond cancer rhetoric to see how the candidates’ larger platforms do or do not support their healthcare claims: basically, show us the money.

McCain’s Health Savings Accounts and Healthcare Tax Credits will not benefit working families who do not earn enough to save or to get a tax credit: these programs will only benefit wealthier families. McCain’s plan to provide insurance to those who cannot afford it is to work with Governors on the state level using high-risk pools. This is not realistic: states are broke (because they have been picking up the tab of the federal government who is cutting social programs; this problem will only worsen under McCain as he stated he wants to eliminate more federal programs), and there is no way that 50 individual states can effectively solve the insurance crisis. State risk-pools are not affordable for the average consumer – I had state risk pool insurance, for which my state paid Blue Cross to offer me health insurance, which Blue Cross got to charged me $450/per month for. McCain is in favor of deregulating health insurance companies; this is at direct odds with his claim to limit pre-existing condition exclusions, which will never be passed under a Republican administration.

Fundamentally, McCain and his party have always supported tax credits that benefit those with the largest incomes, spending more on defense than the budget can often sustain, and spending less on social programs. These kinds of politics create an economy that cannot fund the doubling of the National Cancer Institute budget, or many of the other nice healthcare sound bytes that McCain proposes.

What is your take on the two position papers from the Livestrong blog post linked above?

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September 07, 2008

Time Flies Tip # 1: This American Life

Hours upon hours in a chemo chair. Months of car trips to radiation treatment. 100 forevers racked up in waiting rooms. Too tired, too car sick, too anxious to read but deeply in need of a supreme cancer distraction?

Make your time fly with This American Life, a weekly radio broadcast/podcast hosted by Ira Glass that explores bizarre stories about everyday life. It is the kind of radio storytelling that has kept me sitting on the street in my car for 45 minutes glued to every word, and has also sent me running to the bathroom with laughter, almost peeing in my pants. Episode themes vary from “Fear of Sleep” to “Breakups” to “Giant Pool of Money”. Each radio episode is offered as a free mp3 for exactly one week, beginning the Monday after broadcast, and old episodes can be purchased at iTunes. Best of all, for those who become addicted, their archives stretch back to 1995. If you have never heard the show before and are looking for a good place to start, check out their list of favorites. Just remember, you may need a nurse nearby to help you to the bathroom!

For those of you who have heard This American Life, which is your favorite episode? I think mine is the one where Starlee Kine calls Phil Collins for advice after a breakup.

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September 05, 2008

Get Your Geek On

Ten years ago at an outdoor shopping mall in Scottsdale, AZ, amid pseudo-grass and plasticized trees, my boyfriend (at the time)’s father nudged him in the arm and asked snidely, “Gawd, she’s a carey-ah-grapha?” I wanted to pull him up by his shirt collar and say, “Yes, asshole, I’m a choreographer because I’m good at it and I like it. Don’t make assumptions about my intelligence. If I wanted to be a molecular biologist, I’d be freaking doing THAT instead.” My self-esteem was ignited like never before. Since that day there are few things I have told myself I cannot accomplish.

As young adult cancer patients, we are forced to believe our cancer is the property of uber-scientists or the domain of self-helpers gurus. If you want to join the self-help gurus, no problem; meditate, pray, blow a wad on their workshops. But what if you want to reclaim a slice of your cancer from the uber-scientists? No problem; it’s free, and requires only a bit of time and the desire to learn.

The leading cancer discoveries are now being made in targeted molecular therapies. For example, an article in the August 31 online issue of Nature revealed advances in the understanding of telomerase. Telomerase is a protein complex whose duty it is to maintain the size and integrity of chromosome ends. Telomerase are active in all human cancer cells, but inactive in most cells that are not cancerous. Emmanuel Skordalakes, PhD, of the Wistar Institute, in Philadelphia, stated in a Medscape news article: “That means a drug that deactivates telomerase would likely work against all cancers, with few side effects.” This is huge news. Think about the chemo you may currently be taking. It cannot tell the difference between a good cell and a bad cell; it just annihilates everything in its pathway causing our hair to fall out, our mouths to burst out in sores, and other lovely symptoms.

If you are seeking hope and positive thinking, you may be more likely to find it in science than anywhere else. Don’t let “cancer research” be a phrase that you only read about on a yogurt lid. Seize your smarts and educate yourself about your own cancer. Sure it might take a little getting used to the med-lingo, but you CAN do it, and you don’t need a degree or a classroom.

Here’s a good place to start: The National Cancer Institute’s ‘Understanding Cancer Series: Molecular Diagnoses’. This slide series is so easy to read and accompanied by such colorful diagrams, if there were a sound track you would think you are watching Schoolhouse Rock.

So, what do you think? Have you ever wanted to learn more about your cancer but didn’t? If so, what has stopped you?

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September 05, 2008

Best Reason To Head To Texas

The best reason to head to Texas is not to clear brush with W. It is to attend Planet Cancer’s Re-Orientation Retreat. Planet Cancer is a great young adult cancer organization, which has been known to talk about vomit and dating in the same breath. I have spent years scouring the country locating young adult cancer resources and this organization is the cat’s meow.

At the retreat you’ll enjoy rock climbing, movies, good food, and the company of great people who know what it is like to be bald and have track marks up their arms for reasons other than heroin. Their FREE retreat is for 18-25 year olds who have or had cancer. It will be held in Temple TX, October 31st – November 2. Not only is the entire retreat free, but they also offer free travel scholarship funds to get you there. Click here to apply.

Feeling shy and want a preview of what the Planet has to offer you? Visit myplanet.planetcancer.org – the young adult cancer version of my space where no subject is off limits. warning: it is addictive.

Have any of you ever been to PC retreat? What was it like?

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September 03, 2008

Cells Gone Wild

Today while cancer blog surfing, I came across a blog that cut and pasted an article by Lucy Wong Moi called Cancer Prevention – Keeping Most Cancer at Bay. In the beginning of the article she describes 10 homes near the corner where she lived; 8 of them had family members with cancer. The remainder of her article presents 10 tips on cancer prevention learned in her 20 years as a holistic healer. These include not eating processed foods, “drinking clean unpolluted air to flush our body of waste products”, and breathing in positives, like ideas of good health, and exhaling negatives like stress and destructive emotions.

I find most amusing that Lucy began her article speaking extensively of the high number of cancer cases in her neighborhood, yet never mentioned investigation into environmental cancer clusters as an issue in fighting cancer. (Read more about Cancer Clusters from the Center For Disease Control and Prevention.) The clean air and water that she recommends we drink and breathe are a luxury not available in all geographic regions. Genetics and environment – which includes food and personal health, are known contributors to cancer. Yet we still have a huge question mark as part of the cancer equation. If we understood all the causes of cancer we would be that much closer to a cure.

Lucy’s food and lifestyle recommendations are prudent contributions to personal health, however, they are far from clinically proven cancer prevention. When I was diagnosed as a young adult cancer patient, I was a 27-year-old vegan, who followed the puritanical diet Lucy described, plus I was a dancer who exercised six day per week. Meanwhile, the United States is brimming with overweight 70-year-olds who pig out on Doritos, smoke like chimneys, and never get cancer. Clearly there is complexity to the issue of cancer prevention.

I defend this complexity on behalf of cancer patients so that we are not made to feel as though there is something we could have done to prevent our cancer – blaming the victim isn’t such a nice thing to do to us (unless it is smoker’s cancer, and still it is cruel to spit in the face of their suffering.) I encourage others who do not have cancer to lead a healthy lifestyle for many reasons, but I also caution against the misinformation that eating sprouts and breathing in good thoughts will prevent cancer from growing. If you want to prevent cancer, support exploration of both environmental links to cancer and scientific research into the molecular biology of these little cells gone wild.

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August 28, 2008

One Thin Dime

Imagine this: You have a hacking cough that won’t go away. You try extra sleep, Nyquil, breathing steam, and Halls. This goes on for six months, yet you don’t see a doctor – not because you don’t want to, but you just graduated from the University of Maryland, are working an internship at a local newspaper, plus a part-time job at Office Depot. You don’t have health insurance.

But wait. You DO have health insurance. We ALL have health insurance. It is called an emergency room. Just think, you could saunter up to your local ER and spend eight hours waiting to see a doctor who you’ve never seen before and will never see again. Will he or she accurately diagnose you with Hodgkin lymphoma? Who knows, but who cares? After all not only is the ER free, but it is a perfect place to catch up on soaps, learn from other ER patients how not to peel garlic with a knife, and get triage tips for gun shot wounds.

Does this sound like effective insurance to you? It does if you are John Goodman, who is healthcare policy side kick to John McCain and president of the conservative think tank the National Center for Policy Analysis. An article in today’s Dallas Morning News by Jason Roberson states:

“Mr. Goodman, who helped craft Sen. John McCain’s health care policy, said anyone with access to an emergency room effectively has insurance…

‘So I have a solution. And it will cost not one thin dime,’ Mr. Goodman said. ‘The next president of the United States should sign an executive order requiring the Census Bureau to cease and desist from describing any American – even illegal aliens – as uninsured. Instead, the bureau should categorize people according to the likely source of payment should they need care.’

‘So, there you have it. Voila! Problem solved.’”

Voila, there you have it, Mr. Goodman is an idiot and John McCain is a fool. Emergency rooms are not an effective form of insurance. While writing my book Everything Changes, I spoke with a young adult cancer patient named Seth, who at various points during his lymphoma used the ER to receive his care because he was uninsured. Mr. Goodman, could you sleep at night knowing your loved ones are using the ER as “effective” insurance? I think not. Readers, did you think that who you vote for President doesn’t matter? Well think again.

Have you or someone you know ever been uninsured? And how do you feel about McCain’s advisor’s proposal to coin use of the ER as “effective insurance”?

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August 27, 2008

Alma Mater

Michigan. University of Illinois. Harvard. My friends proudly wear their college names plastered to their chest. I’ve never felt that much pride for my three undergrad colleges. (Yes, count’em three – can you say transfer student? I have a hard time making up my mind.) George Washington University was a major mistake, while Columbia University was a fantastic incubator for critical thought, and Naropa University, the Buddhist College with under 1,000 students nestled in the foothills of the Rockies, was the kind of place where you learn not just about your major but about how to live your life as a decent human being. Still, I’ve got no place on my chest for these institutions of higher learning. Instead I want emblazoned on my T-shirts ‘Memorial Sloan Kettering’.

UCSF. University of Chicago. Northwestern Memorial Hospital. Memorial Sloan Kettering. (Yes, count’em four – I’ve been treated for my cancer at four different hospitals.) It is not that I had a hard time making up my mind where to go. It is that I am a young adult cancer patient. I was uninsured, moved states, switched insurance, got married. Plus, I scrutinize the hell out of every institution and doctor I see to ensure the best treatment at each phase of my disease. So why does Memorial Sloan Kettering (MSK) win the prize? Read on.

Yesterday I read a New York Times article by Gardiner Harris entitled Stanford to Limit Drug Maker Financing. It stated:

“Nearly all doctors in the country must take annual refresher courses that drug makers have long paid for. While the industry says its money is intended solely to keep doctors up to date, critics charge that companies agree to support only classes that promote their products.

On Tuesday, Stanford plans to announce that it will no longer let drug and device companies specify which courses they wish to finance. Instead, companies will be asked to contribute only to a school wide pool of money that can be used for any class, even ones that never mention a company’s products.”

Way to go Stanford but bigger way to go to Memorial Sloan Kettering. Forget Standford’s school wide pool. MSK is the only institution mentioned that has banned ALL industry funding for its doctor classes. I am proud that when my doctors obtain education that influences the medical decisions they make about my cancer treatment, they are doing so based on classroom discourse that is untainted by the pharma podium. It might be stretching it to say that MSK has earned a place in my heart, but they are the institution of higher learning that has certainly won a place on my T-shirt.

And you? Would you ever wear a hospital’s name on your chest? Why or why not?

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August 26, 2008

Breast Wars

In high school, college, even now, I shudder with guilt when I spy a Breast Self Exam (BSE) placard hanging in my friends’ bathrooms. I never do it; I never feel myself up. Yes me, champion cancer patient and advocate. It never occurs to me except for when I’m in a friend’s bathroom and it seems all too complicated to shed my sweater and bra and go to town when I’ve really just run in for a quick pee.

Much to my surprise, when I confessed this three years ago to my general practitioner, instead of raking me over the coals, he said, “Oh no worries, don’t waste your time. A large study, the Cochrane Review, conducted on women in China, shows that BSEs do not impact survival rates.” He explained if a malignant lump is large enough to detect with your hand you are as screwed as if you had waited longer for it to be found by some other method. Plus, the high rate of false positive biopsies of lumps found in BSEs not only cost a bundle, and tax the healthcare system, but the procedure can cause physiological complications to the breast.

I was off the hook and glad for it. I have since learned that based on the Cochrane Review, The American Cancer Society, Canadian Cancer Society, the World Health Organization, the US Preventive Services Task Force, and the UK National Health Services are no longer recommending monthly BSEs.

Well, I thought I was off the hook until today when I spied an article reigniting the controversy. Opponents of the Cochrane study include Breast Cancer Action (the fantastic organization that created the Think Before You Pink Campaign) and The Boston Women’s Health Book Collective (authors Our Bodies Ourselves – who didn’t have a copy of that in college? How can the Our Bodies Ourselves ladies be wrong?)

A blog posting by Rachel Walden on ourbodiesourselvesblog.org states: “Despite concluding that ‘screening by breast self-examination or physical examination cannot be recommended,’ the Cochrane review authors note that ‘Women should, however, be aware of any breast changes..’ and should ‘be encouraged to seek medical advice if they detect any change in their breasts that may be breast cancer.’ It is not clear how women are to be aware of any breast changes without doing self-exams. Another potential limitation of the review is the limited information on how the conclusion might apply to other populations, such as women in the U.S.” Good point Rachel, but could this also be a boilerplate legal disclaimer designed to protect the authors of the study?

American researcher Mark Kane Goldstein, PhD, who worked with support of the National Cancer Institute to identify and validate the standards for proficient breast examination, said in an interview with Medscape Oncology: “It is hard to determine whether a single procedure can affect longevity, so it is difficult to come to clear conclusions about the effect of breast self-exams on survival,” he said. “There are too many variables in these types of studies to isolate just 1 for an outcome such as mortality.”

Other advocates of BSE defend that when given proper training women have been taught to find 3mm lesions in their own breasts, and shouldn’t women assert some modicum of control for their own health?

To feel or not to feel? That is the question. I’m still deciding and would like to know, which side of the breast war are you on and why?

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