Everything Changes - The Guide to Young Adult Cancer

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.

Fear is something I have experienced much of in the last nine years since my diagnosis, and my feeling is that it is not something that I “surmount” or “overcome”, but something that I go “through”.  It is not always pleasant, and coming out on the other side is not always a victory march. Sometimes the only benefit to living through my fear is the reminder that I am human and that suffering is part of the experience.

Sounds depressing huh?  Well not really.  For me I think that living through fear is the stuff that compassion is made of.  It is what allows me to understand and empathize with other people’s suffering.  When writing and researching my book Everything Changes, I sat in the living rooms of so many twenty and thirty-something  cancer patients who confessed to me their most private thoughts about living young with illness.  They talked to me because I listen and I get it, because I have been there and done that.  And when I say been there and done that I’m not talking about cancer, I’m talking about walking through fear.  Fear is a monster but it is also a common denominator that connects me to other people’s experiences of life.

I am living with two tumors in my neck that don’t uptake radio active iodine treatment and there is a limit to how many surgeries I can have.  Sometimes fear is too much for me and I have to check out from it by sticking my head in the TV or popping a xanax.  I cannot walk through fear 24/7.  But I do walk through it a lot.  And it’s scary.  I’d so very much prefer living an alternate life with an alternate medical history, but I do recognize that living with fear just means that I am human, and for now, I have to take what I’ve got.

How do you cope with fear?  Has the way you handled fear changed the longer you’ve lived with illness?  Did you have any idea just how much the cowardly lion looks like a cheap drag queen?

To learn more about how other young adult cancer patients cope with fear, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

When I lived in San Francisco, nobody batted an eyelash at dropping into casual conversation mention of a trip to their therapist.  “Oh, I had a really great breakthrough at my therapy session yesterday” was on conversational par with telling someone “I tried a fantastic new recipe for kale smoothies.”

But San Francisco is not the rest of the country.  (In fact when I moved to Chicago, I realized that San Francisco is sort of its own country.)  Out here in the rest of the world, therapy is often seen as a luxury item or something that crazy people do.  There can be a lot of resistance, embarrassment, and silence about seeing a therapist.  So where is the middle ground for chronically ill patients who are struggling with the stress of their disease and need some help?

I am dedicating this post to a young adult cancer patient who I have become extremely close with over the past three years.  She has been through the wringer with cancer and endless chemotherapy.  She is in a funk and it’s totally understandable.  25% of all cancer patients suffer from depression, and the rate is even higher for young adults. But, my friend lives in the deep south where nobody talks about seeing a therapist. In our last conversation, I got the sense that the idea of going to therapy made her feel like a freak.  Her oncologist has suggested it many times; I thought it might sit better if she heard the experiences of other patients who are trying to manage their own emotional ups and downs with cancer and chronic illnesses.

Give her your therapy 101: Have you ever seen a therapist because of depression, stress, or anxiety related to your illness?  What did you talk about?  Was it useful or not?   How is it different than talking to a friend or your partner?  What other ways have you coped with depression?

To learn more about illness and emotional support, read about Tracy in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I spent five hours sitting on a dumpster dived sofa in an apartment in San Francisco, transfixed in conversation. I was interviewing Wafa’a, a lymphoma patient in her early twenties, for my book Everything Changes. We ranted about parents, dating, and loneliness. At the end of our rapid-fire conversation, Wafa’a clearly, slowly, and eloquently stated a list of pointers she would give to newly diagnosed patients. I thought I’d make my own list too:

1. Climb. If it makes you feel good to climb a mountain or run a marathon with cancer, fantastic.

2. Cry. If you cry yourself to sleep and cannot scrape your depressed head off the pillow in the morning, that’s pretty normal too.

3. Reality. Don’t believe the hype that we can choose whether or not cancer is going to get the best of us. Cancer is not an attitude. It is a disease.

4. Smash. Put one foot in front of the other, roll with the punches, yell, cry, and break things as needed. (I recommend smashing a dozen eggs in the shower: cheap, satisfyingly messy, yet easy to clean up.)

5. Ask. Ask for help when you need it from people who are good at giving it.

6. Learn. Make educated choices while realizing there is no guarantee that the right choice will yield desirable results.

7. Love. Love those who support you and take a break from people who just don’t get what you are going through.

8. Science. Get constructively pissed off at the system, but stay curious about science.

9. Change. Don’t work too hard on using your cancer experience to change your outlook on life; it will do that all on its own. (And if it doesn’t, don’t worry, some of us prior to cancer already had great outlooks that didn’t need much changing.)

10. Vulnerability. Create your own definition of strength and let it change as needed. For me, strength comes from recognizing that I am vulnerable.

What are some cancer truths, or pointers, you would give to newly diagnosed patients?  Are there any of mine that you disagree with?