Everything Changes - The Guide to Young Adult Cancer

I often hear that people live more fully, more passionately after having a life threatening illness, doing things they have never done before. Not me. Since going through cancer treatment, I have a whole new relationship to physical risk. I just cannot stand it.

I used to love hiking – scrambling up rocky hillsides, walking on narrow cliff ledges, going into the total isolation of deep, deep woods. Not now. Instead of freeing adventures I see in hiking mostly risks – falling to my death, injuring myself far away from help, stumbling across snakes.

Radiation treatment was hell for me.  I reached new lows I never knew were possible.  My body now feels hardwired with the message “You are breakable.” I drive like a grandma because I know I’m breakable. I wash knives more carefully in the sink because I know I’m breakable. My fears don’t limit most of my daily activities, nor do I feel like I’ve become obsessive about protecting my body from injury. But I am surely less of a risk taker than before cancer.

I often read about people who have the cancer epiphany – realizing they had always been playing it safe or quiet in life, seeing that they’ve only got one chance to live, they come out of their shell, give life their all.  Again, not me.

I never had a cancer epiphany.  I have always lived passionately and given life my all.  I’ve always striven for my dreams, thought outside the box, not really cared what people thought of me, and rarely took no for an answer. I’m the same me, living that same life. But now, I just do it with a lot more physical precaution.

Since illness, are there new activities you’ve been provoked to do - large or small?  (Sky diving anyone?) Or, have you limited the situations in which you put yourself at physical risk?  Do you have some version of washing the knives more carefully?  Have you reached physical lows from surgery, treatment, or side effects that you never thought possible?  Did this change you?

Read about Geoff’s dare devil cancer acts in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I get winded from climbing a flight of stairs.  This is pathetic.  Aside from having two tumors in my neck (which have no impact on my lung capacity) I’m not sick.  I’m just lazy. I’m a skinny, out of shape weakling.  I’ve always hated exercising.

I’ve been a dancer and choreographer most of my life.  But to me it never was exercise; it was a profession.  Since my first surgery I’ve suffered from dizziness that keeps me from dancing.  I feel like I’ve been evicted from the heaven of the dance world and am now walking among mortals who have to face the drudgery of jogging, yoga, and stair masters.  I find exercising utterly and mind numbingly boring.  I detest it.

I’ve tried many strategies to get myself to exercise.  Positive reinforcement: Reading clinical studies about exercise benefits for cancer patients.   Negative reinforcement:Imagining myself  with osteoporosis.  Guilty reinforcement: Thinking of young adult cancer patients who are too sick to even walk.  Creative reinforcement: Rearranging corners of my house as workout space.  Retail reinforcement: Buying a new pair of Adidas.  Practical reinforcement: Creating 20-minute exercise schedules n my mind.  Writerly reinforcement: Writing tips in my book Everything Changes on how to get back into exercise after surgery and treatment.  None of these tricks have worked.

As a cancer patient, I’ve learned that sometimes how I think and feel about something doesn’t really matter.  Sometimes in life you have to force yourself to do things whether you want to or not, like having surgery or radiation. So if exercise is boring to me maybe that just doesn’t matter.  Just do it.  I’m lazy and unmotivated?  Just do it.  Maybe this is why Nike’s slogan Just Do It really stuck.  Perhaps it appeals not only to motivated athletes but also to lazy consumers like me.  I originally thought that writing this blog post outing my slothy lifestyle would shame me into exercising.  I don’t think so.  No trick is going to work for me.  I just have to do it.

Do you have a love, love/hate, or hate relationship to exercise?  How does illness impact your exercise choices?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for tips and recommendations on how to safely exercise after surgery and treatment.

During my first cancer treatment I was scared and in pain. I wanted hope and an escape, reassurance and strength. It came in the mail.

I received a hand written letter full of empathy and understanding from a guy named Brian. He had suffered from Crohn’s disease and knew what it was like to feel young and beaten down. He told me to remember often the time in my life when I felt the most proud of myself, to remember the details of that moment and how it made me feel. It would get me through the worst of times, he said. And he was right.

I remembered a dance performance I created two years before my diagnosis. I worked so hard and fiercely designing the movement, costumes, the sound score, and an intricate backdrop. I worked with an opera singer, live musicians, and dancers. I wove together their stories with historical documents. At the end of each performance the audience and performers were teary eyed.  It made people think and open up. It was the shining moment of my lifetime.

When I was my lowest during treatment, I took Brian’s suggestion and showered myself in the memories of this hard work and sense of accomplishment. It stirred in me the feeling that I could do anything. In moments when I wanted to die, these memories reminded me about the best parts of living, and that I wanted to make more work that would deeply affect people.

Here was the clincher though: I didn’t know Brian. We went to the same college. He heard about my cancer through the grapevine and went out of his way to obtain my address and send me that letter. Someone who I don’t even know played one of the biggest roles in getting me through the emotional treachery of my treatment. Years later, I’m now trying to find him. I’d like to say ‘thank you’.

Have you ever received wisdom, advice, gifts, cheering on or help from strangers?  Have you ever given it to a stranger in need?  Do you have a “most proud moment”?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about the stranger who sat with MaryAnn and got her through her hardest day of treatment.

In 10th grade chemistry I created 40 phonetic spellings of my first name, chose Kairol, and it stuck. (I was born with the Mrs. Brady spelling. And yes, in 1987 you coul make up whatever name you wanted and slap it on a drivers license.)

So, I got curious when I recently learned Matthew Zachary, founder of I’m Too Young For This, is actually named Matthew Greenzweig. He developed Matthew Zachary as an alter ego after treatment. Here’s what he told me:

“When I was a senior in college, I was a concert pianist diagnosed with brain cancer. They said I’d never play again. I had horrific radiation, was so depressed, and thrown into the lion’s den of trying to figure out what happens to your life after treatment. That was the story of Matthew Greenzweig’s life and it was uncomfortable to be him.

I needed to reinvent myself. I taught myself how to use my left hand again and to play piano. I used my middle name ‘Zachary’ as my stage name. It was an identity created out of desperation; I was refusing to let cancer define me. My chaos, grief, and anger got channeled through the anchor of my pseudonym.”

Like Matthew, I messed with my identity during treatment by changing the way I dressed. I created outrageous pseudo-couture outfits from thrift store finds and wore CFM heels to the supermarket. It helped to feel more like Carrie Bradshaw and less like Kairol Rosenthal.  (Funny that my current wardrobe consists of sweatpants and hoodies –I should be thrown to Stacy and Clinton.)

As my cancer has lingered, I’ve switched careers from a choreographer and to a writer. Living with incurable cancer, I feel more comfortable holed up in the contemplative den of my apartment, living the writer’s life. If I had a choice, I would rather something less painful than young adult cancer as the catalyst for a career change, but here I am. And I’m pretty damn comfortable with my identity.

Illness changes many parts of our identity over which we have no control – becoming a bald woman, someone who can no longer work, who cannot conceive children… But, have you ever responded to illness with a temporary or permanent identity change that you do have control over?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to find out why Nora wore her Chrissy Hynde wig long after her hair grew back, and Mary Ann started dressing in outfits that made her feel like a lobbyist.

I just got back from a ten-day heavenly trip to Georgia with Shannon: lush palms, Spanish moss, butterflies, lazy boating on a lotus lined river, and my mystery fever (just for a day).

I get mystery fevers every few weeks and have for a long time.  I down Tylenol, drink tons of water, lay low that day and don’t push it the next day.  If I get a little cancer PTSD, I take xanax and snuggle with Shannon.

On vacation, the day after my mystery fever, we visited the gorgeous Savannah-Ogeechee Canal with a 1-mile roundtrip walk. The heat index was 100 (which I actually love - call me crazy), the terrain flat and stunning.  I heard a voice in my head saying with confidence: “Don’t do the walk.  I know my limits…. Blog about this when I get home.”

Knowing my limits is instinctual now, but it wasn’t at the beginning of my cancer ride.  I used to push myself hard, like a poster-child cancer patient who was getting the most out of life. I was like Wafa’a, a lymphoma patient in Chapter 3 of Everything Changes, who was addicted to clubbing.  I didn’t want to feel left out, be home alone, or let cancer get the best of me.

But over time I’ve changed my definition of what the best of me is.  The best of me is not Kairol conquering a hiking trail in the beauty of nature, nor is it me feeling sexy in a great summer outfit, nor dancing my heart out in ballet class.  The best of me is when I can look long and hard in the mirror and just be satisfied with who I am no matter what I am doing or how I am feeling. There are no limits to this “best of me.”  I know, I’ve done this look’n-in-the-mirror as a pasty white ghost in a hospital gown about to swallow 150 millicuries of radiation.  If I can be the best of me in that situation, then I suspect it is fool-proof.

Recognizing the parts of me that are limitless makes it so much easier to accept my limits.  No big hike?  No biggie. I sat on a rocking chair at the ranger station and looked at the sky.   It was pretty lovely.  Ultimately I don’t know if it’s cancer that taught me to know my limits, or if it’s just part of being a young adult who is maturing and happens to have a few tumors in my neck.

Do you have a hard time knowing what your limits are?  Do you push them, respect them, hate them?  Has this changed for you over the course of your illness?

Read more about Wafa’a the cancer clubbing queen in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

The Flat Line
Most of us were either not born, sporting pampers, or wearing size 6X bell bottoms and Holly Hobby dresses when Nixon declared war on cancer. Since then, five-year cancer survival rates for peds and older cancer patients have risen steadily. However, survival rates for young adult cancer patients have seen zero improvement.

One of the culprits is our lack of access to health insurance (see my young invincibles schpeil!) But, another huge factor is our lack of access to clinical trials. Clinical trials study new and promising cancer treatments, providing access to cutting edge medication well before they are released on the market. Ready for another shocking statistic? Sixty-percent of pediatric patients participate in clinical trials. Yes, 60%. Only 1-2% of twenty and thirty-something patients participate in clinical trials.

Only now is the first ever large-scale clinical trial being designed to study a particular cancer type in young adult patients. This means that all of the cancer drugs that are infused or beamed up into our 20 and 30-something cancer ridden bodies have only been studied on folks the age of our parents and grandparents. Why is this a big deal? Their bodies are drying up, they have no periods, different hormone levels, and are experiencing middle and end of life health changes.

Life Saving Juice
While researching my book Everything Changes, I ate up Dr. Archie Bleyer’s study on barriers to clinical trial participation for young adult cancer patients. It may sound dry and boring, but this is actually the juicy information that can help extend our lives.

Listen tonight to the Stupid Cancer Show, at 9 PM EST when co-host Matthew Zachary and I will be talking about Young Adult Clinical Trials 101 with clinical trial experts Deborah Vollmer Dahlke and Ellen Coleman.

Have you ever participated in a clinical trial? What was that like? Have you wanted to participate in a clinical trial but it didn’t pan out for you? If so, what were the obstacles? What questions about clinical trials would you like me to ask our guests on the show tonight?

In The Buff
I’ve been blogging and thinking about cancer and moms this week since my Monday night Stupid Cancer Show interview with Pat Taylor, filmmaker and the mother of a young adult cancer patient.

Today I dug up an outtake from my book, an excerpt from a conversation I had with young adult cancer survivor Chrissy Coughlin about moms. It opened up a different avenue of thought about nudity and cancer care. Here’s Chrissy:

“It was definitely strange when my mom was taking care of me and seeing me unclothed. But then I just got to the point where I felt very comforted by the care. It was like a job for her too. She had to do a lot of work and we had a little system down and you just kind of get over it. At first you’re like, “I don’t want you to see my boobies!” and then you just get over it. You just realize the most important thing is you have a mother there who cares about you that much to be able to help you in that way.”

I could totally relate to Chrissy. I felt the exact same way as I got used to my mom bathing me after surgery and when I was exhausted during treatment. But what about friends seeing me naked?

Silkwood
During treatments my sweat became radioactive. I was in isolation for five days and had to scrub myself down in the shower like the scene from Silkwood. It was exhausting. The day my isolation ended, I was too tired to shower. My friend Loren filled a pot and helped sponge bathe me while I sat on a towel on my living room floor. There was also a time when I was so feeble, my friend Anthony helped me to walk to the bathroom and get on and off the toilet. He stood a few feet away with his back turned while I peed.

In my work as a modern dancer and choreographer, I was used to quick costume changes in make shift dressing rooms crowded with men and women. I also lived in crunchy Boulder” for a while, where it ain’t no thang to strip down naked and hop in a hot tub at a party. I think this made it a bit easier for me to be naked in front of some of my friends during cancer.

Have you ever had to be naked in front of friends and family so they could care for you? What was it like? Did it flip you out? Comfort you? Are you any more or less modest since cancer?

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?