Everything Changes - The Guide to Young Adult Cancer

I cannot get rid of my cancer. But lately I’ve wanted to get rid of things that remind me of my cancer.

Prior to my diagnosis, I felt like everyday objects could hold power. A glittery ribbon on a package sent by my best friend had the ability to make me feel more powerful in the world. Coveting the ribbon, I’d set it on top of my dresser and look at it daily. But I’m not that gal anymore.  Cancer has obliterated a lot of my desire and ability to feel things on a deeper level. I’ve got enough sensations and emotions flying around in my head thanks to medically induced hyperthyroidism. In response to this overload,  I want to scale down keeping things simple.  I don’t have the energy to feel so attached to objects and sentiments.  The ribbon is now a ribbon - not a reminder. And it’s no longer on my dresser.

It’s getting colder outside. I’ve switched my summer jammies out for my winter PJ’s. I have six Calvin Klein PJ pants I bought nine years ago at Marshall’s after I was diagnosed. They were not retail therapy purchases, but rather my new uniform. I’ve racked up thousands of hours in bed and on my couch in these clothes. The fabric is thinning. The legs have grown. I’m a total miser and know I could get another season out of them. But do I want to go to bed every night wearing my thyroid cancer uniform?

These pants are just pants. They don’t hold any power or negative energy. But they did come from a time in my life I don’t want to remember so much anymore. It would be better for the environment if I got a tenth and last season out of them. But I think it would be better for me if I didn’t. I’m heading to Marshall’s tomorrow for new PJs. While I’d like this to be a casual shopping trip, there might be some ceremonial undertones and maybe a lump in my throat. That is, a lump in addition to the two tumors nesting in my neck.

Do certain objects remind you of cancer? Do you covet them or want to trash them?

Read more about coping with the before’s and after’s of life with cancer. Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I’ve been really into reading young adult fiction lately – less taxing on my brain after a long day of writing.  I love recalling the mindset of my middle and early high school years when everything around me was either cool or completely embarrassing.  It was a pretty narrow focus, one that cracked and splintered when anything more complex (like a family member’s cancer) arrived on the scene.

When tough times were going on around me, I saw straight though adults chumming up to me with pop-psychology, didactic books, and sentimental moments. All they elicited were eye rolls and a contemptuous desire to run out of the room screaming.  I could handle “learning moments” in the form of an After School Special, but that was about it.

That’s why I adore and highly recommend a slender new book Brushing Mom’s Hair, by Andrea Cheng.  A book of 52 short poem/vignettes about a 14-year-old whose mom has cancer,  there’s no room for the sappy crap adults want kids to learn and feel.  It reads like it was written by a 14-year-old.  She makes computer graphs charting her mom’s fluid intake, is stubborn, bratty, and sweet, obsessed with ballet, first kisses, and her weight.  Supposedly for teens, I think it’s a better match for middle school girls.  (I wasn’t reading Sweet Valley High in high school; I cared most about the insights of teenagers when I was in middle school.)

Nieces, nephews, students you are teaching, your own children, younger siblings.  Lots of young adult cancer patients talk to me about how kids in their lives respond to their cancer. How have kids in your life responded to your cancer?  Eye rolling?  Openness? Any tips for what works, what doesn’t when dealing with cancer and kids?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Tracy’s dos and don’ts for living with breast cancer and parenting a 13-year-old son.

P.S. When I was a sophmore at Columbia University, I baby sat for Francine Pascal’s kids… Guess what - Fancine was actually a 30-something guy!

Vote Now: Should I Delete Spaz as A Friend on Facebook?

I’m not trying to go 6th grade on us; I think this is a great topic up for grabs, with a friend who never minds public exposure or controversy (or at least he didn’t 20 years ago; maybe we’ve changed since high school!)

Tuesday night I posted on facebook “Kairol Rosenthal is debating with Shannon about how much money doctors should make.”

Spaz commented on my wall – he’s a high school friend, with whom I used to watch John Hughes movies, attend peace rallies, and kiss in the park.

Spaz wrote “… You used to be into music, movies, activism and all sorts of other things. Is medical stuff and malignant masses really all you are into now? … It’s like people are born again and only talk about Jesus. If this is annoying or rude, delete me as a friend and I’ll understand. Otherwise. Weren’t you married recently?”

Mr. Malignant
Comments went up on my wall defending me, calling him malignant. But Spaz raised a good question that others wouldn’t dare to. Here’s my reply:

Medicine is the central issue of our time; talking about it is activism. Health care impacts the financial status, productivity level, and quality of life of most Americans.

In the last 6 months, I haven’t touched the Arts section of the Times; I used to drink it in. Instead I read about doctors’ pay, pre-existing condition regulations, and a proposal to split FDA in two. These issues profoundly impact on my life, and yours too Spaz.

I get the born again analogy, and could reply, “I have no choice but to talk and think about healthcare. I’ve got cancer.” But that’s bullshit. I have a choice about where my mind goes, and lately I’ve been questioning the direction. Have I had a day in the last three months where I didn’t ruminate on health care? No.

My Bagels and Pajamas
Patients across the country call and email me daily about insurance, getting second opinions, financial resources, and cancer. I love that I, and my book, can help people.

Some days it’s taxing though to be all about cancer, like today when I am just sad and pissed off at the insidious, malignant tumors in my neck. I tell myself to stop the health care chatter: take more walks, watch more ballet on You Tube, write facebook updates about my breakfast or that I’m still in my PJ’s at 1:57 PM.

But who gives a shit about my bagel or PJ’s? Perhaps nobody cares about how much doctors get paid either, but I think we should. We can’t complain about health care if we aren’t educating ourselves and to be part of the solution.

So yes, Spaz, I’m married to Shannon Fisk, an environmental attorney for NRDC. We don’t want kids, love our dog, are total geeks and night owls, and live in Chicago, but wouldn’t mind moving to New York. Last night we climbed into bed, debating if convicted murderers should be allowed to study and practice medicine after serving their sentence. Conversations like this are my passion, just like music, photography, or gardening is for others. I’m damn lucky that I’ve become a healthcare author, and that something I love (and loathe) so much has become my profession.

How would you respond to Spaz? Would you delete him or not? Do you think about your health more than you would like to? Do you discuss health care issues with friends who aren’t young adult cancer survivors?

Some will fall in love with life
And drink it from a fountain
That is pouring like an avalanche
Coming down the mountain

I wanted to use this quote as the first page of my new book, but then I thought better of it. If you had never heard of this band, cracked open a book and saw the words “Butthole Surfers”, you might be slightly deterred.

The song has nothing to do with cancer and is a pretty harsh reality check about young people dying. So why do I love it so much? First, the music is an incredible receptacle for the of non-verbal, physical angst that piles up in my body, like right now as I’m only six days away from my check up. Blasting this song and dancing in my living room is an essential in my repertoire of fidgety distractions.

Secondly, I love the combined images of swallowing up life and having it cave out from underneath you. Avalanches are the most accurate depiction I have ever seen of what it feels like to be diagnosed with cancer as a young adult. You are sailing along, and it is not that you trip, or fall, it is that the entire face of the mountain you are on crumbles away beneath your feet and you go flying with it. Forget chanting or peaceful meditation; watching the intensity of avalanche videos just feels down right healing to me. Step away from the You Tube!

Do you have a cancer anthem song? What symbols, images, or metaphors do you relate to that describe your cancer experience or what it means to be a “survivor”?