Everything Changes - The Guide to Young Adult Cancer

Last night was Shannon’s office party.  (Fantastic blue cheese, good shrimp.)  One of his co-workers gave me a seriously long hug, clutched my arm, and looked deeply into my eyes. “How are you?,” she asked.  “I’m great I replied.”  “No.  REALLY.  How are you feeeeeling?,” she asked.

Some people who know that I’m a young adult living with incurable cancer expect me to feel like crap or be in misery. And when I’m not I get the ‘you’re a heroic trooper’ comments, the puppy-dog-eyes look, or the ‘it’s okay, I get it, you can be honest with me’ statement of disbelief over my feelings of wellness.  It’s maddening.

If me feeling great isn’t good enough,I wish they ask: ‘Do you feel the physical impact of cancer on a daily basis?’  I love blunt and upfront communication, and think this is what they are trying to get at.  I would reply: ‘I can’t feel the tumors and I’m not on treatment. I’ve gotten used to the side effects from my meds.  The hardest part is often the mental trip of cancer, but I’m really doing great right now.’

That kind of sounds like a kick ass reply, huh?  Maybe it should just be my response when someone asks me the overly tender ‘How are you doing’ question.  Though I wish I could get away with “I’m great, how are you?” just like everybody else.

As much as these pitying interactions really piss me off, I see a flip side.  Today the New York Times has a section on the voices of lupus.  After listening to people talk about this rather mysterious and unknown disease,  I see I’m lucky to have a disease with good name recognition that others take seriously.  Prior to my cancer diagnosis, my doctors suspected lupus. If I were a lupus patient, I might look great, feel like crap, and nobody would even bother to recognize my disease or pain.

Do people ever ask you how you are feeeeeling in a way that is different from how they talk to someone who is not ill?  How do you respond?  Do you appreciate the recognition and attention, or do you wish they would approach you as they approach others?

Read more about illness and social interactions (both victorious and defeating) in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I write, talk, and debate a lot about when as young adult cancer survivors we should reveal our illness to a date.  But what happens when we don’t even get to tell someone about our cancer because the grapevine beat us to it?

When I lived in San Francisco, some friends joked that I was The Dancer with Cancer.  It was news on the street among my extended social circle, and often I didn’t mind because many people who heard offered me help that I really needed: rides to doctors appointments, help with laundry.

There is a power to being about to decide to whom and when we reveal our illness, especially when it comes to dating.  Take  Sheila in Everything Changes who was extremely private - not even  disclosing cancer to her close friends.   On the other hand, Dana, also in my book, was relieved that when she and her husband began dating, he already knew that she had cancer.

In today’s New York Times Well Blog, Tara Parker-Pope interviews Trisha Meili, the Central Park jogger, who 20 years ago today was raped and brutally attached at age 28, resulting in brain injury.

“I met my husband on a blind date in 1995. A woman I had gone to college with knew him. I told her, ‘do me a favor, don’t tell him my history. That’s my story and I want to be able to tell it if I want to.’ In talking to him before we met, I had told him I went to Yale business school and the school of management. He mentioned it to a friend who had also attended Yale. She said, ‘You know who that is, don’t you?’ And she told him. In the end, it didn’t matter, but there was a little bit of that feeling, ‘Hey, that’s my story.’ The media keeping my anonymity is something that I do appreciate. I was known as the Central Park jogger, and when I told my story it was my choice. That was a degree of control that I had completely lost with the attack and the rape. When I’d meet someone it’s not like I would say, ‘Hi, I’m the Central Park jogger.’ It’s kind of a conversation stopper.”

Have you ever had someone find out about your cancer or another illness without you telling them?  Were you glad that they already knew, or would you have rather told them yourself?  In your circle of friends, among co-workers, in your family, did your cancer news spread like wildfire? Did you have a control valve that let you determine who knew?  If you could go back, would you do anything differently about disclosing your cancer?