Everything Changes - The Guide to Young Adult 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?

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?

“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?

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.

“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.