Everything Changes - The Guide to Young Adult Cancer

Some people feel their body doesn’t belong to them anymore during illness; it belongs to the doctors.  With cancer, I didn’t just surrender my body,  I also relinquished the privacy of my home.

During surgery and treatments, my mom traveled to San Francisco and moved into my studio apartment.  My kitchen was in a separate room and she retreated there to read, quilt, and write letters, trying to give us each a shred of privacy.  I never asked her for this seven feet of privacy.  She probably needed an escape from caregiving as much as I needed to feel like a grownup with an ounce of independence.

I’m not a clean freak.  Some days it looks like a tornado tore through my home.  But during cancer treatment, I wanted everything in its place.  I suddenly liked things tidy, wanted the floor swept, and my bed made.  I wanted control over my domain.  At 27, I was suddenly roomies with my mom who I had not lived with for 10 years. It was a tug of war.  I needed and wanted her there providing household help and emotional comfort. But I also wanted to feel like an adult with a life and a home of my own.  I wanted to cry alone sometimes and to eat cereal for dinner without being questioned.

Lots of patients in my book Everything Changes adapted to new living situations during treatment.  Some had a revolving door of friends with keys to their house dropping by to help with errands.  Others had to make a hospital room their home, and some moved in with parents or cousins.  We all found ways to stake out territory in our less than private shelter.  During my second treatment, when friends stopped by with food, I got good at telling them when I wasn’t well enough for them to stay and chat.  Dana’s mom posted a large sign on the door of her hospital room instructing nurses when they could and could not enter.  When Wafa’a moved in with her folks she lit candles and listened to Nina Simone making her bedroom a retreat from the rest of the house.

In a life or death situation it’s easy to say that all we want is to be healthy.  But I think there’s a whole lot more that we can want too.  Privacy was at the top of my list.

Did you lose your private space when you became ill?  How did you cope with it?

For more strategies on coping with cancer and privacy, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I injured my knee while napping on Wednesday.  (Who gets injured napping?)  Still super painful on Thursday, Shannon pushed me into my doctor’s office in a wheelchair.  The cause of the pain is still a mystery.  We joked with my doc that it’s H1N1 in my knee, or a very new and original manifestation of PMS.  He told me to ice, rest, pop Advil and check in with him on Monday when he gets back from vacation.

My doc’s going on vacation.  Well that’s what he said at first.  Then at the end of the appointment he said, “I’ll be back on Monday, it’s a simple procedure so I should be on my feet in no time.”  What?  He slipped up but obviously wanted me to think he was off to Tahiti not the OR.

The same day, I read on the New York Times Well Blog a post called ‘When Doctors Confide in Patients.’  They told about a young woman diagnosed with MS who worried out loud to her doc about not being able to have kids or work.  The doc confessed she was living with MS too, working as a doc and had kids.  It helped the patient so much to learn about the doc’s life.

I adore my primary care doc.  He’s probably my age and so easy to talk to.  He tells me anecdotes about his life in passing but I don’t have too many details.  Our relaxed conversations help our communication, which in turn improves my care.  But  there needs to be space.  If I knew too much about his life it could get in the way of him giving me appropriate care.  For example, would I be cool with him slacking off or slipping up if I knew he was just diagnosed with cancer last week?  As a patient, I should not be put in the position to have to make that decision.  I think my doc strikes the perfect balance with me of personal and private.  With docs, I think there is a fine line of TMI.

How much do you know about your doctors’ lives?  Do you like knowing about your doctor’s life, is it weird or ever too much information?

For tips on improving communication with your doctors read 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?