Everything Changes - The Guide to Young Adult Cancer

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.

“Are you going to write in your book about the people who died?  It is so depressing,” a person in the publishing world asked while I was writing Everything Changes.  My answer: a polite version of “You better f***ing believe I am.”

How could I write a book about cancer and exclude the people who died and their families?  Yep, it has its sad moments, but that’s why cancer sucks.  That’s why we raise money for research.  That’s why I write a blog and wrote a book, and promote young adult cancer organizations: all so we can support each other around the pissy hard times.

Charissa is an recent widow who I’ve become friends with.  She is an incredible woman who I adore.  (See her recent post Mourning As A Young Adult?)  And I love my regular communication with a few different patients who are end-stage.  The death aspect of other people’s cancer experiences does not freak me out.  I don’t know why.

There are,  however, many young patients barreling through illness who do choose to steer clear of relationships with end-stage patients and grieving partners.  I do not judge these patients for giving a cold shoulder to death and hence a brush off to other patients and families facing it. The need to cocoon yourself from death when you are a young adult trying so hard to live does make sense to me.  Plus, I have papillary thyroid cancer - a disease from which very, very few people die, so I’m never faced with the question of communicating with someone who is dying from my disease.  Maybe it would make a difference to me… maybe not..

But let’s look at the other part of the equation: The patients and families who are facing death.  They’re still part of our community.  Cancer doesn’t end when you stop taking chemo.  Cancer doesn’t end when you enroll in hospice.  Cancer doesn’t end when your partner, who had lymphoma, has been dead for nine months.

Yet, I talk regularly to end-stage patients and grieving families who say they feel unwelcome in the young adult cancer world, from seemingly simple conversations where patients insist that everyone is a survivor and nobody is a victim, to feeling unable to express their fears of dying or phases of mourning in chat rooms, at conferences, and in support groups.  That stinks.  And it needs to change.

Have you ever avoided dying patients because they feel unhopeful to your own survival?  If you’re end-stage, have you found support in the young adult cancer world and what do you want that you aren’t getting?  If you are grieving, do you want to stay connected to the cancer community and how have you been received?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Spoiler alert: most of the people are still living but not all of ‘em.