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.

Soon into my cancer care, I somewhat unintentionally started developing small, mundane rituals around my house.

After my first surgery, I had a daily pattern.  When I could muster up the energy, I would sit in a warm bath and listen to Patsy Cline.  The bathroom was a world away from the rest of my studio apartment where my mom and I were living side by side.  Getting into the tub felt like a vacation, and a major accomplishment.  My world had become so small, so boring, so comparatively unproductive that taking my Patsy Cline bath everyday felt like a tangible accomplishment.

I typically despise routine, schedules, and predictability.  But so many things that I could formerly count on, like having a social life, working, paying bills, were thrown out the window when I became a young adult cancer patient.   I wanted just a shred of something I knew I could count on;  I needed to become a tame control freak.

During my second treatment, I instituted four hours of alone time each day.  I sent my mom packing, unplugged the phone, powered down my computer, and sat on the couch looking out the window.  I simply stared at the bare tree branches for four hours each day.  My mom probably thought I was totally depressed.  But I just needed time to myself.  It was my anchor.  Everyone around me had places to be at certain times – work, class, dates.  I needed a schedule to my day so I wasn’t just floating through the murkiness of unmarked time.

A lot of people I interviewed in Everything Changes had ways that they needed to spend time during and after their cancer.  Greg spent long stretches of time alone just working on his boat.  HollyAnna loved to go up to the mountains, sit, and watch the water flow down stream over rocks and stones.  When Wafa’a lived with her parents, she’d retreat to her room, lit candles, listened to Nina Simone, and read Milan Kundera.

Do you have any little rituals that get you through the hard times?  Have you ever felt compulsive about them?  Do you do them even during times when you are well?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how I coped with staying sane during cancer care.

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 do.  Read this book: Your Brain After Chemo: A Practical Guide to Lifting The Fog and Getting Back Your Focus by Dr. Dan Silverman and Idelle Davidson.

The best trick for cancer brain fog is to learn about it and become empowered. Your Brain After Chemo provides copious information on cancer brain fog, how it works, and how to talk to your doctor about it.  Written at what seems like a 8th grade level – it’s a super easy read for a fried cancer brain.

“Knowledge is power” sounds cliché, but I felt more in control of my brain after reading this book.  Why?  Young adult thyroid cancer patients (I’m one) have been shown to complain of memory problems more than any other group of young adult cancer patient, but rarely are we treated with chemo. It was extremely validating to read that memory problems may also be caused by fatigue, depression, anxiety, and sleeplessness.  (Hence, I am starting a personal campaign to stop calling it ‘chemo brain’ and start calling it ‘cancer brain fog’.)

Chapter 6 talks about different kinds of concrete brain tasks.  It helped me realize there are a plethora of ways in which my brain still functions beautifully.  And, it provided more technical concepts for describing the ways in which my brain is on the fritz.  This improves my intellectual self-esteem. I now tell myself I have a hard time with verbal memory; much kinder than saying my brain is screwed and I’m an idiot.

The book fell short in a few places: I take with a grain of salt studies with only 24 participants, and there were a bunch cited in this book. (Granted “chemo brain” has been under acknowledged and under researched until now.)  The brain food section seemed contradictory and a bit superficial. The book lacks a 411 on our rights and access to assistance in academic and workplace situations due to cancer side effects.  This is a big one for young adults.  Still, I think Your Brain After Chemo is a great read for any cancer patient.

Here’s my favorite practical tip of the book followed by a few of my own:

* Eliminate scrap paper, write everything down in one notebook instead.
* Use highlighters and take notes when reading anything.
* I call my cell phone and leave messages to myself on my voicemail.
* I use a vintage office mailbox set with 12 compartments next to my front door to sort stuff I normally lose: keys, important papers, plane tickets, my dog’s leash.

Have you ever talked to your doctor about your cancer brain fog?  What was their reaction?  What ways have you learned to cope?  What tricks do you use to help your life go more smoothly with a scattered brain?

If you experience cognitive deficits caused by cancer, they be covered in the workplace under the American’s With Disabilities Act.  To find out more, read Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.

Patients for A Moment is a blog carnival by/for/about patients.  Every other week Duncan Cross, blogger extraordinare, solicits posts from patient bloggers.  He then features them all together in a singular post on his blog.  Now he is passing the torch.  Twice a month, a new blogger will host Patients for A Moment.  This is my week to host.  Catch the next one on August 12 on Adventures of a Funky Heart.  To learn more or read the Patient for a Moment archives, visit:

Patients for a Moment #4

In his post The Albatross, Duncan Cross writes profoundly about my favorite illness subject: s-e-x.

I used to take pride in being an overachiever, now I balk at it.  Read Baldylocks’s Exceeding Hyperdrive on The Adventures of Baldylocks: hula hoop video included.

Did you know more patients die each year from medical errors than from breast cancer?  Patient safety receives far too little attention, so I was excited that Florence dot Com wrote about it in her post I’m So Very Sorry.

On Brass and Ivory, Lisa Emrich asks an in-your-face, utterly informed, and armed with statistics kinda question about prescription drug coverage to a panel of doctors at the National Press Club, in Not Your Typical Patient. Lisa is my hero.

Novel Patient takes a flipcam to record her second infusion in Rituxan Take Two, where we watch a mundane hospital routine become personal.

Aviva from Sick Momma has been asked 100 times by her 4-year-old daughter “Mommy, when are you going to die?”  Here’s her answer in From The Mouths of Babes.

Leslie, from Getting Closer to Myself, fuses sociological perspectives on health and illness with her most recent flare of lupus, in What Does It Mean To Live In  A ‘Remission Society’?

Laurie Edwards at A Chronic Dose writes about blogging in the illness community and how it has made her a less judgemental person in On Listening and Judging.

Kate at After Cancer, Now What writes about Scars As Fashion Statements.

Cathy Bueti writes about olfactory senses and PTSD in What’s That Smell?? on her blog In My Life.

If you’re ever terrified of getting an endoscopy, Kim from Emergiblog will put your mind at ease with her post I Went, They Scoped, Now Starbucks is History.

I’d love to know which posts you’ve read and what struck you the most.  Leave a comment below.

The Everything Changes blog is a companion to my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Both book and blog are resources for anyone living with chronic illness.  All are welcome!

I talk and write an awful lot about the loneliness of being single during cancer.  Yep, I’m married now, but I went through four years of cancer singledom before I met Shannon.

Being married means more than having someone to hold you after a horrible day at chemo.  Check out all of the perks afforded to married couples: Spouses get visitation rights, smoother application of  power of attorney, and can get our meds from the pharmacy no questions asked.  Spouses get to share insurance benefits and might even get special tax breaks.  Spouses have the built in support of sharing possessions, expenses, and are often built in caregivers.

I’m damn lucky to get these pluses and feel it is totally jive that single people and unmarried same sex partners don’t.  Here are some resources that, while they are a tiny drop in the bucket, are good ones to check out:

Hospital Visitation Authorization Document from the Human Rights Campaign - Instructs your doctor, care providers and hospital staff about who is allowed and given priority to visit you if you are hospitalized.  This is a great document, but as we have seen in recent news about a lesbian woman who had power of attorney and was still unable to visit her dying partner, these documents don’t always work in every real life situation.

Breast Cancer Recovery Infinite Boundaries Retreat – Special retreat for women who are or have gone through the experience of breast cancer without the support of a spouse, partner or significant other.  They have already held their session for this year, but I’d get on the mailing list so you can find out ASAP about next year’s - it fills up fast!

Are you/ were you single or unmarried during any part of cancer?  What were your biggest challenges?  How did you work around them?  I only mentioned the negatives.  Are there any benefits to being single or unmarried with cancer?

I read a med journal article yesterday about vegetarian teens being at risk for anorexia and it got me thinking about cancer survivors and eating disorders.

In my late teens and early 20s I was anorexic and slightly bulimic – no puking just herbal laxative tea.  A vegan, lola-granola, ballet dancer, I was afraid to eat rice cakes because they had .05 grams of fat.  I obsessively read labels and scrutinized every ingredient that entered my mouth.  I exercised like mad and couldn’t look at my body in the mirror. Reflecting on this, I’m damn proud that I figured out how to pull my ass out of such a scary starvation addiction.

By the time I was diagnosed with cancer at 27, I was eating normally, had hips and curves, loved French pastries and brisket.  So it was a jolting mind fuck when part way through my treatment I realized how much this disease could mess with my appetite.

With cancer, I wasn’t eating because I was dizzy and nauseous. My treatment protocol necessitated that I inspect for iodine every morsel I put in my mouth. I was bombarded by media images, books, and trendy articles telling me that if I ate vegan, avoided sugar, and subsisted on vegetables I could beat my cancer. My medication made me shed 18 pounds.  I looked and felt anorexic all over again, even though I wasn’t.

I had some serious in the mirror talks with myself to keep me on track and not let all the side effects, stress, and fashionable cure diets slide me back into my horrible habits of the past.  I’m still stick thin from my meds, but my mind is balanced and I’m aggressively trying put on pounds while eating healthily.  (Yes, you can add your name to the wait list of people who want my problem.)

Fifteen-percent of young women in the U.S. display some kind of eating disorder patterns, so I cannot be the only gal (or guy) who has dealt with young adult cancer and the memory of an eating disorder.  Yet, I never hear it spoken about.  Do you?  Did food, appetite, weight gain, or weight loss ever mess with your mind during treatment?  If so, how did you deal with it?  Do you ever take cancer diets to an extreme where it seems obsessive or unhealthy?  Where is the balance?

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?

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?