Everything Changes - The Guide to Young Adult Cancer

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?

The last time I confessed my morbid little day dreams it was a real hit both here and at Planet Cancer, so here I go again:

Confessions

Wondering what to do once you’ve croaked with your iPod, journals, and the IRA account you opened two years ago? If so, you are not alone. I’ve met tons of young adult cancer patients who write and rewrite their wills in their minds - even if death is not imminent. You hear the word cancer and it’s just natural to wax morbid. Sometimes it even feels comforting.

Well, I’ve got a new one. My Uncle Bill died this weekend. He was a fantastic human being, a doctor who taught to med students classes in doctor patient communication, and a prominent clinician whose research on Downs Syndrome changed the lives of thousands of children. (He was buried with a Grover puppet – how great is that!) I was reading his obituary and noticed three Downs Syndrome organizations that people could donate in his honor.

It got me thinking, if I got hit by a bus tomorrow, or if this cancer deal took a turn for the worse, would people know where to donate in my honor? What if they chose some ridiculous cancer organization that was all about pharma and pink ribbons and gave no money to young adults with cancer? That would suck.

Earmark

So I’m going to send this post to my family to make it known that should I step off a curb tomorrow when the #147 is flying along Sheridan Road, this is where I’d like people to donate in my honor: Planet Cancer, and earmark the funds especially for their Advocacy Roadshow program that will educate physicians about detecting and diagnosing young adult cancer patients at earlier, more treatable stages. How many of us struggled to get diagnosed because we were told by doctors we were too young, we must have pulled a muscle in yoga, or were hypochondriacs? Never again. Maybe I shouldn’t wait for death – perhaps I should forgo Chanukah presents and have my mom and dad send the money to Planet Cancer instead.

Do you let your mind wander to thoughts about your death, your funeral, or wills? What do you do with the morbid little nasty thoughts that pop into your mind? What organizations would you choose to have people donate to in your honor?

As a young adult cancer patient, I feel I have reached my quota of sickness. I don’t want more cancer, nor do I want my friends’ colds or their kids’ flus. Germs linger and it is easy to recycle colds within a household. If you, your roommate, your parents, your friends, or your kids have been sick, treat your dwelling like a New Jersey superfund clean up site.

1. Wash. Wash in hot water bed linens, towels, and the cozy throw you cuddle up with while watching TV.

2. Pillows. Launder pillows, or better yet, buy pillow protectors and launder them.

3. T-brushes. Crack out a round of new toothbrushes. (Purchase many at a time so you always have new ones on hand.)

4. Clothing. Wash scarves, jackets, or other clothing that comes in contact with your mouth or face.

5. Alcohol. Spray down knobs, remote controls, keyboards, counters, and cell phone with alcohol.

6. Pocket book. Cleanout and wipe down your purse or wallet.

7. Kleenex. Empty the mountain of Kleenex piling up in your trashcan.

8. Air. Open windows and crank a fan to get fresh air flowing. Live in a freezing climate? Air out while you are walking the dog, running to the store, or visiting your downstairs neighbors.

Do you have any other clean up tips to add to the list? Does it change your mental state to wipe away the physical grime? Do you ever avoid friends’ or family members’ homes because they don’t clean after colds?