Everything Changes - The Guide to Young Adult Cancer

By Kristen Schindler

Cancer has a way of destroying the parts of you that you define yourself by. I felt cancer destroyed my ability to push my body to do great things.  I am an athlete, but my treatment for Hodgkin’s Lymphoma sucked away most of my energy. I played softball in college, and have invested years upon years into my athletic career. It took only six months of chemotherapy for my body to lose most of the muscle and endurance I had built up over 12 years.

I had expected to struggle physically while I went through treatment. And I even planned to give my body some time to recover once my treatment had ended.  However, I was shocked when three months out of treatment, my energy had not bounced back according to the three month timeline my doctor had given me.

This process of rebuilding muscle, strength, and lung capacity, is anger producing and depressing at times. It is a constant comparison to the pre-cancer me. I am unsure if I will ever be the athlete I was before and I do not have time to train and workout like I did when I was in college. I am terrified that my body will never fully recover from cancer, and my athletic ability is the most glaring indication of that.

I have slowly learned to give myself a break, and relish in my small accomplishments. I still want more, but I am realizing I am in the midst of moving forward. I played softball this summer, and I began to see my old self begin to shine through while I pitched multiple games each weekend. Cancer temporarily took away certain self defining characteristics, but my drive and ambition to be better and push myself is one characteristic that has not been altered.

Were you an athlete or avid exerciser prior to cancer and how has your identity changed since your diagnosis?

To learn more about how young adults handle rapid changes in their identity after being diagnosed with a chronic illness, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I first posted this piece last summer, but knew I had to revive it when I got a great request from ChronicBabe for posts on the theme of chronic illness and humor:

Last week, I was interviewed in a Newsweek article about young adult cancer humor. I’m, not a very funny person. I’m just not. Don’t worry, I’m not being harsh on myself. I think I’m smart, compassionate, and fairly attractive. But, I’m just not very funny.

I love to laugh, but my humor is particular, maybe even stubborn. I can’t rent dvds from the comedy section; I just don’t find them funny. Nor do I find cancer jokes very funny. So, it was really hard when Newsweek asked me to contribute some jokes to the blog that accompanied the article. Here’s what I sent:

*What do you call a young adult cancer patient with health insurance? A Canadian.


*Why did the cancer patient cross the road? He wanted to get hit by a truck.

These jokes are the best I could do.

I’m not above cancer humor, and I’m not particularly politically correct. I just have a hard time laughing at something that has killed a lot of people I love, and caused me and my family enormous pain and distress. I have plenty of laughter in my life. But I don’t want or need it to come from my illness.

Jill Harrison, a young survivor in the article said she feels humor can be a cover up for issues we have a hard time talking about. I agree.  (Though I see exceptions, like Heidi Adams who is both a total jokester and very real about hardcore cancer issues.)

I find it strange that cancer is something people often relate to through humor. Why is that?  I never hear people cracking jokes when someone says their dad died of a brain anurism, or that their apartment was charred in a fire. Yet humor seems almost like a branded expectation put on oncology patients.

I feel like the cancer community often dumbs me down, like I need a little slap stick song and dance routine to make it through. And as a result, I see very little time devoted to the the hardest conversations of it all. Did you know that almost 1 in 4 young adult cancer patients won’t make it? How many resources are there talking about end-of-life care for young adults? Almost zilch. And that’s not funny.

When we start actually addressing the really, really hard side of cancer, maybe then I can start laughing about the rest of it. But probably not. I think cancer might always be serious to me. Instead, I’ll spend my time laughing at Cake Wrecks. Yeah, I do find some things funny. Just not cancer.

What is your take? Do you laugh at your illness? Is it ever nervous laughter or good medicine? If you have a disease other than illness, do you find that humor and light-heartedeness is used in your patient community?

Check out my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.  I didn’t think it was a funny book, but readers have told me it caused the kind of laughter that makes beverages squirt out your nose.

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.

Forget the ball in Time Square.  My favorite part of New Year’s is talking stalk of the past 365 days.   I’m curious about your best and worst of 2009.  A fan of delayed gratification, I’ll save my best for last:

#1 Sucky Times: My worst moments of 2009 were around illness.  But not only mine.  I spent a lot of time in the hospital with a close family member.  It was totally new for me to be a caregiver instead of a patient.  They both suck.

#2 Pissed Off and Outraged: In 2009, my blood boiled over the slanted reporting about the public option, and watching the cancer community totally skirt healthcare reform issues, doing next to nothing to advocate for us.  How are any of us going to answer to our grandchildren about sitting by and watching tens of thousands of cancer patients die each year because of lack of access to care?

#3 Ass Kicking in Congress: My friend Lisa Friedman and I spent a day pounding down the doors of Congress this past spring, meeting with legislative aides, and having a fantastic talk with Kennedy’s folks.  Young adult health care was our focus and we rocked.

#4 Mission Accomplished:  I spent five years researching and writing Everything Changes.  In February it hit the shelves of bookstores throughout the U.S., Canada, Australia, and the UK. I especially loved walking into Barnes and Nobel in Union Square in New York City and seeing it prominently displayed as a special pic read.

#5 Dream Come True: I don’t really have idols -well,  except for Terry Gross. I’ve always dreamed of being a guest on Fresh Air.  I soared with happiness after spending an hour and a half in an NPR studio recording an interview with her about young adult cancer that aired in September.

#6 Everything Changes:  Two weeks ago, I had one of the best check ups out of my entire nine year career as a thyroid cancer patient.  I sometimes have a hard time trusting good news.  (Note to self to write a post about that.)  But this time I have really soaked it up and am incredibly grateful. Though I hope I don’t jinx myself by writing this!

What were your highs and lows of 2009?  Gimme your laundry list.

If you haven’t yet read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s – you don’t have to go to Union Square to get it.  Go to any bookstore or just click here!

I was asked to write a guest blog post for Dear Thyroid about having cancer around the holidays.  But being an atheist-Jew, I truly was at a loss for words. I had to pass. This is just not a subject I know much about.

So I thought I would turn it over to you guys to educate me a bit more about what the holidays hold in store for anyone who is facing illness.  Have at it.  Leave a comment with stories, kvetching, tips, rants, or good memories about what it is like to be sick and dealing with:

Family, food, lethargy, expectations, looking like crap, feeling like crap, feeling great when others think you should feel like crap, travel, germs, sibling rivalry, office parties, being broke, being grateful to be alive, wondering if this is your last Christmas, being on chemo or in the middle of scans or treatments or staying in the hospital during X-mas, low-iodine diets during X-mas, feeling like a loser for not having New Years plans, not caring if you have New Year’s plans, or anything else your heart desires.  School me about illness and the holidays!

Learn more about how young adult cancer patients cope with family encounters in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Last week I started cleaning out my cancer closet.  This week I’m continuing the job.  In my filing cabinet, I discovered a list I made called 32 Ways To Spend My Time.  I wrote it while living in limbo-land after my first treatment.  I was well enough to get out of the house most days.  But I didn’t have enough reliable physical energy to start finding a job, get off disability, and tackle a normal work week.  I felt lazy, cabin fever stir-crazy, unproductive, and anxious to have a life again.  So I created a list of productive (and inexpensive) ways to spend my time.  My list included:

Update my address book * Visit my great uncle * Learn geography * Listen to new kinds of music * Find new and unusual museums to visit * Stretch * Reduce and donate my belongings * Do drop-in volunteer work * Find a dog that needs to be walked * Make thank you collages for people who had helped me out.

To other 28-year-olds, this list must have seemed elementary.  To me it was monumental and gave me purpose.  Many of the tasks on the list I could do even on days when I wasn’t feeling well.

When I interviewed young adult cancer patients for my book Everything Changes, the most frequent comment I heard was that life after treatment was the toughest part of the cancer experience.  After treatment is often the first time many of us have to stop and think about all that has just happened to us.  It was important for me to pay attention to these feelings, but I didn’t want to do it 24/7.  This list helped give me some focus and direction.  No matter how simple or how trivial the tasks, I needed to have a life outside of my sick bed.  How ironic that one of the items on my list was “Get a tape recorder, interview people, and make a project out of it.”

What was life like for you after a prolonged period of illness or treatment?  Did you find satisfying ways to spend your time?  Were you financially or physically limited by what you were able to do?  How did you handle it?

I got a tape recorder, interviewed people and made a project out of it called Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Check it out.

It’s time to clean out my cancer closet.  Between living with cancer for nine years and researching and writing a book on young adult cancer for five years, I’ve accumulated an abundance of oncology articles, books, and magazines.

The task is more emotional than I anticipated.  Lodged in my collection of scientific data are notes I scribbled in the margins, like: “None of these stats apply to me. Is it time to abandon Western medicine?” I’m still am not cured.  Thankfully I have learned how to manage my cancer better now than when I wrote that note.  None the less, it’s sad reading my paper trail of desperation.

It’s hard getting rid of my books on palliative and end of life care.  They were invaluable in helping me write resource sections for Everything Changes.  A loud voice says, “Hang on to these Kairol, you might need them someday for your own care.”  Cleaning my cancer closet is highlighting that over the past two years, I’ve come to expect that I am going to get a secondary form of cancer.  I hope I am wrong.  I don’t get worked up about it.  But it’s a thought I can’t shake.

Some survivors make scrapbooks about their treatment.  When I last  moved apartments, I culled my collection of get well cards from a  mountainous box to one manila envelop. I might even want to ditch that now too.  Over time, I cling less to my cancer memorabilia.  Yet, I still commemorate my cancer care almost daily through my writing.

I like my perspectives on cancer care.  I want to continue blogging, writing columns, speaking, and working on special projects with organizations. But lately I’m making a shift from having two feet in the cancer world to one foot in and one foot out.  For example, at the end of this month, I’m stepping down as co-host on The Stupid Cancer Show.

My identity as a cancer patient is shifting.  It isn’t easy.  But it is good.  Growing pains are better than cancer pain.

How much do you want to remember you cancer care and how much do you want to move on?  Do you save research information or get well cards?  Do you ever anticipate getting a secondary form of cancer?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn how Geoff’s identity changed as a 13 year survivor diagnosed at 22.

I’d always thought of registered dietitians as women who sit behind a desk outside a cafeteria and tell you to drink Ensure and eat canned vegetables.  I recently I’ve learned how wrong I was.

Tons of chronically ill patients feel pressured, overwhelmed, and unhinged by all the healing diets that are thrown in our faces.   (Want some proof? Check out the comments on my post Are You Overwhelmed By Cancer and Diet Choices.)  I’m constantly wondering what’s smart and scientifically proven, and what is just trendy, a scam, or even a well meaning goose chase for the cure.  What about cleansing, eating raw, eating organic, and fasting?  How can cancer patients eat well if they don’t have three hours a day to cook or a bank account to pay for Whole Foods shopping?  And what about those of us who are really sick from treatment and can hardly eat let alone follow a strict diet?

At the beginning of my quest for info, I learned the difference between a nutritionist and a registered dietitian:  Anyone can call themselves a nutritionist - the label holds zero clout.  But RDs have graduate level training, understand science and chemistry, and sit for licensing exams.

So I started over the phone nutrition counseling with a Greta Macaire, an RD from my hospital.  Free, individualized counseling from someone who wasn’t trying to sell me a lifestyle, a product, or a workshop – I loved it!  Her practical recommendations gave me a sense of ease that no Lola Granola cancer diet has.

I wanted to share her advice with the rest of you.  So I had her on  the Stupid Cancer Show along with her colleague Natalie Ledesma and  Breastless in the City author Cathy Bueti.  I also reviewed on air Rebecca Katz’s new book The Cancer Fighting Kitchen, which is a must-have cookbook for learning how to cook and eat during treatment and after.  You can download for free the podcast from 11/16/09 Cancer and Nutrition Part 1- Finding Balance.  (The nutrition conversation starts at minute 24:00 if you want to fast forward.)

It’s been so helpful to have a trusted source dispel the myths about cancer and nutrition, and to give me simple, economical ways to support my body.  No quick-fix magic pills nor Ensure or canned veggies.  Just sound advice.

Have you ever used a registered dietitian? Is there sanity in your diet?  If so, how did you find it and from what sources?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more tips on how to save money and time as a cancer patient.

Ever since I was a little kid, I’ve had a huge don’t mess with me attitude.  I’m a scrawny Jewish girl, but am quite in touch with my inner Rambo.  It’s no surprise to anyone who knows me that I am a really aggressive cancer patient. But lately I’ve been wondering if aggressive is always the smartest choice.

Sometimes I’m aggressive out of fear.  Living with cancer is damn scary.  It’s easy to want to pull out the big guns so I can feel forceful in fighting my disease.   My doc told me I could lower the dosage of my medication slightly.  Instead of embracing the prospect of diminished side effects, I want to stay at the highest dose possible.  It’s a bit of a “Thank you sir. May I have another?” attitude.  A hurts so good attitude.

But is my choice pro-active and aggressive or just misguided and stupid?  Harder and stronger isn’t always a guarantee of healthier.  Many women still choose to get mastectomies for peace of mind in circumstances where they are not medically necessary.  A family member chose to take a very strong chemo that was not medically necessary because it made her feel proactive.  But what does peace of mind mean if the science doesn’t really back it up?  Should we invest in comparative efficacy research when so often patients make emotionally based choices?

Taking high doses of my medication makes me feel like an aggressive patient.  But an aggressive patient is someone who questions, reads, looks at their illness from all angles, and makes smart decisions.  And sometimes the smartest decision is the smaller, quieter action.  Or even no action at all.

Under the guidance of my doc at Memorial Sloan Kettering, I’m doing a wait and watch approach.  I’m living with two active tumors in me instead of having more surgery.  Many people can’t run fast enough to the OR to have tumors removed.  For my case, aggressive surgery isn’t the smartest choice right now.  I’m doing a pretty good job of tempering my inner Rambo and sitting tight with my guns at bay.  You’d think if I can convince myself to wait and watch, I could also convince myself to ratchet down my medication.  It isn’t happening yet.  I still need a security blanket.  And for now, my higher dosage of medication is it.  Aggressive? Yes.  Smart? Not necessarily.

How do you define being an aggressive patient?  Have you ever become dependent on the hope that stronger, harsher medications or procedures will make you better even if the science isn’t there?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how Greg balanced smart and aggressive decision making.

I’m still living with cancer in me.  But it’s been years since my last treatment.  Now that treatment is farther in the past, my mom and I are able to talk about it more, especially about her caregiving role.  She flew across country, lived in my tiny apartment, and took care of me for weeks at a time.

A few months ago my mom said, “I wish your friends had called me up and asked to meet me to lunch.  Or taken me out to the movies.  You wanted your alone time each day.  I was in a new city and overwhelmed, I really didn’t know where to go.”

The desperation of her statement was a shocker.  My mom’s no shy country mouse.  Drop her in a new city with a street map and she’s taking public transit to parts of town I’ve never heard of.  But this was different.  Few things are more painful to a mom than seeing her kid critically ill.  She needed to flee our little infirmary and zone out in front of the big screen.  I was too absorbed with my own illness to even realize.

My mom is still a huge support to me.  But my husband Shannon has now taken over as my main caregiver.  It’s super stressful for us when we are waiting for test results or dealing with my treatment and care.  I shoot out emails to his friends when it gets close to high anxiety dates (scans, big doc appointments).  I ask them to take him out for beer.  (Belgian at the Hopleaf if possible.)  Is it my job as the patient to help take care of my caregiver?  In small ways, when I am physically able, I think it is.

If you’re a caregiver, what do you do to take care of yourself and get time away?  Is it hard to make time?  If you are a patient, do you think your caregiver spends enough time taking care of themselves?  Are you able to help them get some time away?

Read hard to find practical tips and resources for caregivers in Everything Changes: The Insider’s Guid to Cancer in Your 20s and 30s.