Everything Changes - The Guide to Young Adult Cancer

When I was first diagnosed with cancer, everybody and their mother was telling me what to do, how to handle it.  Some advice was so off it made me want to stick my fingers in my ears and chant “blah, blah, blah” like a three year old.

This is one of many reasons why I wrote my book Everything Changes.  I wanted advice that didn’t make me regress to toddlerhood.  I wanted really smart advice that I hadn’t seen anywhere else.  I wasn’t finding it in other books or cards or tee shirts.  So I found it in long intimate conversations with other cancer patients.

The end of my five-hour conversation with Wafa’a really stuck out to me.  She described herself as always being hyper with fear, constantly on the run, going clubbing, to yoga, hanging out with friends.  (Yep, that gorgeous woman with the disco ball is Wafa’a.) And, she was a ball of energy in our conversation too – quite wise but loaded with freneticism.  And then at the end of our conversation, she busted out with this really calm, clear statement that blew me away.  Here it is:

“Right now, I just tell myself what I would tell anyone who just got diagnosed: It’s just one day at a time. Remember to breathe. Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time. If you need denial right now to get through, do it. If you need to cry and feel it every day, do that, too. You’re not alone, no matter how alone you feel, and you will feel alone, ’cause you feel like you’re the only one going through it. And we are, because we’re all different in our own way. But there are people out there that can kind of understand, and when you’re ready, they’ll be there for you.”

I’m curious, if you were to give advice to someone who was recently diagnosed, what would you say?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more words of wisdom from Wafa’a.

Flirting in Bars

In today’s Huffington post I talk about 20 and 30-something cancer patients cramming for finals, flirting in bars, climbing the first rung on our career ladder, and changing stinky diapers.

In my interview with Christine Hassler she asks: If you had one thing to share with recently diagnosed 20 and 30 somethings that you wish you had been told, what would it be?

My Response

You do not have to become a glittery superhero in order to fight adversity. Cancer is hard stuff. Strength comes from being real. Allow yourself to sometimes feel vulnerable and to have meltdowns. They do not last forever and you may even feel invigorated afterwards.

Secondly, the definition of hope is fighting for your best care. Cancer is not only emotional and physical, it is administrative too and the burdens of paperwork can really impede our healing. Many hospitals have patient representative services or ombudsmen. If after your second try you are unsuccessful at getting records, obtaining procedural approval, or resolving a financial matter, have one of these professional advocates intervene on your behalf. Think, question, and shout when you need to.

What is one thing you would share with newly diagnosed cancer patients that you wish you had been told?

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?