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’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.