Everything Changes - The Guide to Young Adult Cancer

Ric Gribenas is a brilliant sound and installation artist. While writing my book, I met with him in his art studio to record a conversation about his experiences of living with Hodgkin’s in his twenties. What I remember most was how he vented in his bedroom with his door shut while blasting Billy Bragg, and his take on the war analogy:

Punching The Clock

“Illness is often viewed as a battle, a war, a sad, and tragic thing. I’ve replaced the war analogy with a work analogy. Illness is work for me. Cancer is my second job. I have scheduled times I have to go to the hospital. I go. I do the work. I come home. It’s hard work but cancer has become a part of my everyday life and I certainly don’t think of my life as a battle or war being had.

The cancer analogy to war sets up patients as having these terrible things inside of us. But in my particular case, Hodgkin’s is genetic, so it is very much a part of how my body decides to operate. My body is creating these cells as part of its natural path, so the war analogy doesn’t really work. Psychologically, I don’t think the war analogy is very helpful either. Potentially it could help someone who has a short eight-month bout of cancer and goes into remission and never comes out. But for anyone who has to deal with cancer as a chronic behavior, with repeated entrances into illness, the war analogy fails because the illness is a lot more complicated than just fighting one battle and winning.”

Wit

I agree with Ric, the war analogy doesn’t work for me. When I was first diagnosed, it freaked me out that my cancer didn’t feel like something to fight against. In a series of dreams, my cancer was pearls and gems dangling from canopy beds and hung on long clothing lines. I always awoke feeling that my cancer was painful and unwanted, yet majestically important. These dreams have long vanished, as has the royalty of this malignant routine. But, I still feel that cancer is a part of my body to work with rather than fight against. Cancer is smart. I want to work with its intelligence so I can outwit it.

Do you have images for how you view your cancer? Is it a war, battle, fight? Has your perception of how you describe your cancer changed from when you were first diagnosed?

I read a fantastic article in the New York Times, by Lesley Alderman, about how to save money on prescription drugs. I’ve slash out the doughnut hole lingo and other senior factors and created a summary version that relates more to 20 and 30-somethings.

As part of the research for my book, I’ve done a ton of research on resources for discount drugs, and other forms of financial assistance for young adult cancer patients. On the right column of my blog page, click ‘Download Chapter One’, underneath the cover of my book. The resources section at the end of this free PDF is loaded with my finds.

Snail Mail Drugs
If you have health insurance, call the 800 # on your card or search on line to see if your company offers a drug mail order system. Many do. This service tends to be used for prescriptions you take on an on-going basis. For example I pop a levoxyl every single day, and will for the rest of my life. I could get these sent in the mail from my insurer at a huge discount. This service, however, would not be used from a temporary drug, such as an antibiotic for an infection. The paperwork to sign up for this service is relatively simple, so what the hell am I waiting for? Bulk levoxyl here I come.

Brainstorm With Your Doc
To your next appointment, bring a list of your Rx’s or the actual bottles. If you have health insurance also bring a copy of the list of drugs your insurer covers – this is called a formulary. You can get it by calling your insurance company or visiting their website. Then ask your doc the following questions:

• Is there any duplication of medications – are they all necessary?

• Have they all been effective and do you need to remain on all of them?

• Are you still on the correct dosage?

• Is there a generic version that could be used instead? (Be sure to ask about generics anytime you are given a prescription.)

Comparison Shop
If you are paying out of pocket, check out Destination RX to shop around for the best prices on prescription drugs. Times reporter Lesley Alderman also suggests trying the local or mom and pop drugstores in your area too. Sometimes they have surprisingly lower prices.

No Insurance or Low on Cash
If you don’t have insurance visit the Partnership for Prescription Assistance, that has a database and online application for free prescription programs for low-income, uninsured, and underinsured patients. Yes, the organization irritates the hell out of me because it is a non-profit group run by pharma to help those of us who cannot afford their drugs, and they are likely just getting a tax deduction from it all plus good PR, but I guess we take what we can get, right?

Are there other ways that you have tried to cut your Rx costs?  What was the most you have ever paid for a prescription?  (I once got a shot that cost $2,000.)  Do you ever get Rx by mail?  If so, has it saved you money?

Ina, Martha, and Nausea
This week on the Stupid Cancer Show, I interviewed Karen Jung author of Healthier Eating and Living with Cancer.  I’m a big fan of Ina and Martha and the aesthetic of their presentation.  Karen agrees that visual appeal can make it or break it with cancer in the nausea department.  She suggests experimenting with the colors of plates against the color of various foods, recommending white plates for brightly colored vegetables.  She also recommended taming the olfactory-gag effect of food by cooking with the kitchen door closed (if you have one) and allowing food to cool before serving.

Vegan Cancer Girl Scouts
Vegan is the new black.  Everybody is doing it. Suddenly the oh-so-seventies rage of juicing and raw foods is hot among young adult cancer survivors and pedestrians alike.  But Karen’s recipes aren’t about beet juice margaritas for dinner.  I was curious why she chose standards instead:  During active treatment, patients often cannot digest abrasive raw veggies or potent green shakes.  Karen tested her recipes on scores of survivors in radiation treatment and chemotherapy, and there is a reason why they serve Jell-O in hospitals – sometimes it is all you can get down.

On The Page
She had lots of great ideas when I talked to her but when I read her book they were not mentioned. The cover is beautifully designed, but some of the suggested foods like hot dogs on hoagie buns didn’t shout cancer, nor would I need a cookbook to make scrambled eggs.  I’m not a nutritionist but the antioxidants she notes that come from two slices of cheese in a grilled ham and cheese sandwich seem like a snippet of nutritional information lifted out of context.  The order of the book is also confusing; cookies listed after appetizers and before meats, while vegetables are the final section.   My conclusion, if I’m hankering for Hungarian goulash, I’ll reach for the Joy of Cooking instead.

What were your favorite cancer foods?  How did you hack the sight of food when you wanted to hurl?

I spent five hours sitting on a dumpster dived sofa in an apartment in San Francisco, transfixed in conversation. I was interviewing Wafa’a, a lymphoma patient in her early twenties, for my book Everything Changes. We ranted about parents, dating, and loneliness. At the end of our rapid-fire conversation, Wafa’a clearly, slowly, and eloquently stated a list of pointers she would give to newly diagnosed patients. I thought I’d make my own list too:

1. Climb. If it makes you feel good to climb a mountain or run a marathon with cancer, fantastic.

2. Cry. If you cry yourself to sleep and cannot scrape your depressed head off the pillow in the morning, that’s pretty normal too.

3. Reality. Don’t believe the hype that we can choose whether or not cancer is going to get the best of us. Cancer is not an attitude. It is a disease.

4. Smash. Put one foot in front of the other, roll with the punches, yell, cry, and break things as needed. (I recommend smashing a dozen eggs in the shower: cheap, satisfyingly messy, yet easy to clean up.)

5. Ask. Ask for help when you need it from people who are good at giving it.

6. Learn. Make educated choices while realizing there is no guarantee that the right choice will yield desirable results.

7. Love. Love those who support you and take a break from people who just don’t get what you are going through.

8. Science. Get constructively pissed off at the system, but stay curious about science.

9. Change. Don’t work too hard on using your cancer experience to change your outlook on life; it will do that all on its own. (And if it doesn’t, don’t worry, some of us prior to cancer already had great outlooks that didn’t need much changing.)

10. Vulnerability. Create your own definition of strength and let it change as needed. For me, strength comes from recognizing that I am vulnerable.

What are some cancer truths, or pointers, you would give to newly diagnosed patients?  Are there any of mine that you disagree with?