November 13, 2008

Obama, Lance, and My Cancer

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?

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November 12, 2008

Telling Kids 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

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

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November 10, 2008

More Cautious Since Cancer?

My friends tease me as I creep down Lakeshore Drive like a granny obeying the posted speed limit. Too casually our culture talks about being hit by a metaphoric bus. My 20-something cancer diagnosis turned that metaphor into a reality. My mantra now is if I can possibly prevent more bodily harm to myself and others, why not? Sometimes it does feel dangerous though inching along at the speed limit while the rest of the world is flying past me.

And flying they are. Today’s New York Times Well Blog discussed a survey on motor safety that asked motorists: “‘At what point do you feel speeding becomes a threat to the personal safety of you and your family?’ The motorists were given three choices: 5 m.p.h., 10 m.p.h. or 20 m.p.h. over the speed limit.” Survey says: 79% thought it was safe to drive 10 m.p.h. above the speed limit, and one-third said it was safe to drive 20 m.p.h. above the speed limit.

Okay, I confess. I’m no saint. I do have my transgressions. Recently my husband and I left our house in Chicago two hours late on a road trip to Pittsburgh. We needed to make it there in time for 9pm Yom Kippur services. Our mantra for that car trip became “Outta my way people, we’ve gottsta atone!” We clocked an average well above the speed limit. It was particularly wonderful to sail through Indiana and Ohio at record speed. But just writing about it gives me pause: Cars are heavy hunks of metal. Life is precious.

We in the young adult cancer community talk lots about how illness has made us appreciate life more. To what extent is that true for you? Do you value your personal safety more or less since you were diagnosed? Has cancer made you obey the speed limit, buckle your seat belt, or changed your other driving habits?

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November 08, 2008

Time Flies Tip #4: The Ken Burns Affect

Okay, so you are too sick to stay in school. Yeah, so you are too weak to go to work. That doesn’t mean that you have to halt your education or give up on having goals. When I was glued to the sick bed, I still wanted to make to-do lists, keep my mind active, and feel productive. Enter Ken Burns.

Ken Burns is not just an affect on iPhoto. He is one of the most notable documentary filmmakers of our times. With painstaking detail, he crams a semester’s worth of learning into each of his epic films. Perhaps only a geek like me gets off on the idea of learning the U.S. History that I slept through in high school, but I swear these six, eight, ten-hour films are addictive.

When your mind is too fried to read, or you want a good movie for the chemo chair that is a bit deeper than Hollywood mind candy, check out his movies: The War, Frank Lloyd Wright, Baseball, JAZZ, and more. They are all available on NetFlix, and many public libraries carry them in their DVD collections. Watching a whole season of Project Runway is good fun, but sometimes it is nice to up the brainpower.

Do you have any other great, educational documentaries (by Ken or other filmmakers) to add to the list?

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November 06, 2008

You’ve Got Cancer and A Teenager?

“Lately I feel like an astronaut out on a space walk — constantly praying the tube attaching me to the ship doesn’t snap and send me flying into outer darkness.”

This quote from the first paragraph of Everything Beautiful in the World is evidence enough that it is time to ditch the didactic pamphlets from the American Cancer Society written for cancer patients who are raising teens. Pick up Everything Beautiful instead.

Lisa Levchuk’s new novel for young adults is set in the 1980’s, but is no ABC After School Special. In addition to having a mother with cancer, 17-year-old Edna, the main character, is also having a fling with her fourth-period ceramics teacher. No, I’m not trying to scare you into home schooling your high schooler while you are going through chemo. I’m just advocating for giving your kids a real deal glimpse at the life of another teen (albeit a fictional one) whose parent is teetering on the fringe with cancer.

Do you have any nightmares or success stories about raising your kids while you have cancer? What is the best advice you’d give to a recently diagnosed parent with teenage kids?

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November 05, 2008

Pragmatic Hope

Eight years ago I was diagnosed with cancer at age twenty-seven. Eight years ago George W. Bush also became President of the United States. I’m not delusional enough to believe there is a connection between these two events, however, in the history of my own personal life, they are deeply entwined.

November 4, 2000, I was lying in bed three days post-surgery. My thyroid and 30 tumors were removed from my neck. My mom was asleep on a dingy futon on the floor of my studio apartment. Exhausted from the chores of motherly caregiving, she slept soundly while I listened to the radio. The announcers were ticking off states as they rolled in. Florida went to Gore. But in a short while the announcer remarked that there maybe a problem and they began suggesting recounts.

I could not sleep. It was not the election, it was my nerves, my fear of impending radiation, and my realization that I had just been diagnosed with cancer. The rapidly unfolding election debacle was a nightmarish distraction from my own private hell. When my mom woke up in the morning, I had still not gone to sleep. Sitting in our beds, I told her the whole story that rest of America was just waking up to.

I’m not an optimist. I’m a pragmatist. For me, hope is not a solution for fighting cancer. For me, faith is not the key to survival. Vigilant watch over my doctors, continual education, and relentless research in an effort to find unopened doors – that is how I surmount my cancer. After multiple surgeries, many goes at treatment, my cancer persists. Eight years later, I am thirty-five years old and still not cancer free.

I am not insane enough to believe that my cancer is tied to the election. But tonight, in a crowded bar in Chicago, as I watched Obama’s victory speech, I secretly hoped to myself that this much needed change in our government would some how usher in a change in my health. Maybe the four letter word plastered on buttons, t-shirts, and bumper stickers around town has sunk into my subconscious; for the first time in eight years, tonight I dared to hope. The feeling didn’t last long. Just about the length of Obama’s speech. When it was over, I turned to my husband and said, “He better make good on his word to eliminate pre-existing condition exclusions.” Like I said, I’m a pragmatist.

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November 03, 2008

Twice the Stupidity – Half the Price

“Same bottle. Same medication. Same pharmacy. So why does one bottle cost 50% less?” This was the ad copy printed above a photo of two orange prescription pill bottles on a glossy mailer I found in my mailbox. It was sent to me by my insurer, United Healthcare. Inside the mailer is a description of United Healthcare’s inane Half Tablet Program:

1. Your doctor writes a new prescription for twice the strength and half the quantity, noting your intent to split the tablets on your prescription.

2. Fill the prescription, automatically paying only half your usual co-payment.

3. Split each tablet and take half—you get your usual supply for half the cost.

Excuse me, but was the legal department on vacation the month United Healthcare created this program? Is their goal to increase the risk of improper dosing?

The Half Tablet Program is clearly not about helping patients, but rather about cost savings for United Healthcare. (Remember, this program gives them a smaller tab to pick up too.) Can I fault them for wanting to save on the exorbitant costs of prescription drugs? No. But certainly they can find saner and safer ways to coerce savings than asking patients to chop our meds in half.

Let’s eliminate half of the Barbie Doll drug reps trolling through doctors’ offices carting cases of samples. Let’s slash pharma CEOs’ pay in half. There are all kinds of solutions to reduce the cost of medication. Putting my health at risk by whacking my prescription pills in half is not one of them. Did I mention that if you act now United Healthcare will send you a free plastic pill splitter? Enticing. But I still think I’ll pass.

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October 31, 2008

Feed The Animals

I work hard. I’m in love. I pour my heart into taking care of my friends and relatives. I show gratitude. I don’t own a TV. I pet my dog. I walk in crunching leaves. I try to eat well. I’m in touch with my emotions. I read. I vote. I educate myself. Shit happens too. And I deal. Whether I want to or not. Whether it is easy or not. Whether there are solutions or not. I don’t concern myself too much with self-help checklists for living the good life. This may sound incredibly arrogant, but I think I’ve got it down. Or at least I thought I had the good life down. Until last night.

Last night when I hit play on a Girl Talk YouTube music video, I experienced a transformative moment (and believe me, I use quite sparingly new age babble like “transformative”). Flying from my limbs was full force dancing, the likes of which I have not choreographed since I was ten years old making up dances to Michael Jackson in Amy Burkoff’s basement. I did not care that my dining room blinds were up and my neighbors had full view. My world completely disappeared; I was one with Girl Talk.

I live the good life, but last night I was larger than life. A larger than life state of mind is not new to me, nor is it induced by the fact that I am a young adult living with cancer. In fact, the bullshit of cancer compounded by my current workload and family responsibilities has made me anything but a gushing spectacle of love and gratitude. I’m not into the ‘cancer made me a better person’ perspective. It’s just not true for me. I think I was a pretty good person to begin with.

What I am into is the perspective that every once in a while, a perfect moment occurs that helps me shed the skin of distress and fear and allows me forget my life for a while. You don’t have to have cancer, diabetes, cystic fibrosis, or any other kind of disability to tune into this kind of larger than life experience. All you have to do is listen to Girl Talk’s new album Feed The Animals.

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October 30, 2008

The Hydration Situation

‘Carry a water bottle with you everywhere,’ is the answer I most commonly hear when I ask young adult cancer patients for practical tips on how to get through chemo. I don’t want to instigate enviro-paranoia, but I do want to talk about solutions to recent news that the chemical in hard, plastic water bottles can interfere with the effectiveness of your chemo.

Tara Parker-Pope, healthcare blogger for the New York Times, recently wrote the post Plastic Chemical May Interfere with Chemotherapy. Here’s the gist: Bisphenol-a, (a.k.a. BPA) is the chemical used to make polycarbonate, the ultra-durable plastic used in hard, clear water bottles. (Not the soft plastic drinking bottles like an Evian bottle – which has also come under scrutiny, but the hard plastic bottles like a Nalgene bottle.) A group of University of Cincinnati scientists recently tested on human breast cancer cells moderate amounts of BPA typical to the levels found in the average human’s bloodstream. They discovered that a protein was induced that protected the human breast cancer cells from being destroyed by chemotherapy, much the way that estrogen does. In effect, BPA can reduce the effectiveness of chemotherapy.

While this news might reek of quacko-conspiracy, this study was not funded by a bunch of crunchy hippies in Berkeley. It was funded by Susan G. Komen, the National Institute of Health, and the Department of Defense (lots of breast cancer funding comes from DOD, but that is a whole different post.) The FDA is even reviewing the safety of BPA and is getting their hands slapped by their own science panel in the process.

Instead of freaking out about the chemo and hydration situation, I asked blogger Catherine Perry ( for some practical solutions. She recommends drinking from unlined, BPA free stainless steel water bottles. “Make sure your stainless steel bottle doesn’t have a plastic liner inside, which may leach BPA. Also, canned foods have been shown to be the predominant source of our exposure to BPA (from plastic lining inside). So along with switching bottle types, try to eat more fresh foods and use ceramic, glass, or unlined metal containers for storing and heating food.”

If my best friend Jana, an enviro-queen from Seattle, and Stuff White People Like, are predictors of encroaching trends, I think we’ll start seeing stainless steel water bottles popping up everywhere. Most importantly, make sure you’ve got one next to your chemo chair.

Do you chug water? What kind of container do you use? Do reports like this make you want to change your containers, or do you not respond to this kind of info until the FDA releases a product warning?

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October 28, 2008


Mammogram: $15 co-pay
Pap smear: $15 co-pay
Trip to a shrink: $20 co-pay
State regulations: priceless

MasterCard. Visa. Have you ever noticed that most major credit card companies are headquartered in Delaware or South Dakota? Not shocking. These states have the least stringent regulations for credit card companies.

Freedom to choose. This is one of John McCain’s selling points about his healthcare plan. He boasts that we as Americans will have the freedom to go across state lines to choose insurance companies. What he doesn’t tell you, is that this same freedom will also allow insurance companies to close up shop in your state and move to the state with the least insurance industry regulations. If this happens we as consumers will be screwed.

Let me give you an example. I live in Chicago. Illinois is one of 28 states that require insurance companies to cover cervical cancer screenings. If McCain is elected president, my insurance company could create national headquarters in Utah, the only state in the country that does not require insurance companies to cover any women’s health screenings. Even though I live in Chicago, my paps would no longer be covered.

I don’t give a shit what the candidates say in their position papers on cancer that they submitted to the Lance Armstrong Foundation and posted on their own websites. Cancer screening, clinical trials, and access to quality, affordable healthcare saves lives. If insurance companies have the freedom to set up shop in the least regulated state in the country, we as a cancer community will lose.

If you care deeply about reducing cancer deaths and suffering, it is your obligation to do more than buy pink bling, and participate in bike and walk-a-thons. It is your duty to understand the connection between cancer and the candidates, and vote for Obama. The election is one week away. If you or someone you love cares about cancer (or diabetes, or mental health issues, or children’s healthcare) and is considering voting for John McCain, please sit down with them, and kindly and persuasively explain to them how John McCain’s free market system is going to cost lives.

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