Everything Changes - The Guide to Young Adult Cancer

I like my body and I have no problem wearing short skits or low cut shirts. But as a young adult cancer patient I shudder at the exposure of a hospital gown.

I excel at finding new fashionable ways to tie on a hospital gown, using excess fabric to craft fancy bustles, pleats, and empire waistlines. My creations are often inspired by beat up copies of Vogues sitting next to me in the ladies waiting room.

Despite my loathing for hospital gowns, I recognize that those fly-away openings and simple, barely-there closures exist for easy access. In the end, forget designer garbs, I’d rather docs be able to access my body – especially in case of emergency.

An article in the Wall Street Journal today describes a new grant by the Robert Wood Johnson foundation that will support the creation of new hospital wear. They also report on the Hackensack University Medical Center in New Jersey that commissioned new hospital wear by designer Nicole Miller. The argument exists that new privacy promoting gowns that will boost patient morale.

None of us want our asses hanging out as we stroll the unit with our poles. And, I think patient moral is incredibly important – it helps us comply with doctors orders. But, I think our moral suffers way more from administrative issues, cost issues, and lack of face time with doctors. Given that these new fashion gowns will cost more money to produce and purchase, I say the Robert Woods Johnson foundation and hospitals find other ways to spend their time, dough, and new discovery resources.

What do you think? How important is it to you that we design new hospital gowns? What do you think about current gowns? If you were to redesign an new gown what would it look like? Share any good hospital gown stories you have.

I cannot imagine anything harder than being a parent and watching your kid have cancer. My mom has done it for nine years. Holy smokes. She is amazing and since it is Mother’s Day I thought I’d tell you why:

1. She lets me call her anytime of the night to cry or just talk on the phone.

2. She is a great listener. She gives opinions but is never judgmental.

3. She always lets me know she is a plane ride away, and she has hopped on plenty of planes when I need her. (Thank you Southwest for your cheapo Pittsburgh to Midway tickets!)

4. She runs into her local Barnes and Nobel to make sure they have enough copies of Everything Changes in stock, stops in at cancer centers to talk up my book to social workers, and she set up a table at her local Curves for people to buy copies of my book.

5. She is feisty while still being lady like. If someone spouts stupid cancer comments to her (like the time someone at synagogue said in reference to my cancer “God does not give you anything you cannot handle.”) she knows how to put them in their place while maintaining her dignity.

6. She has really valuable advice. “Honey goes farther than vinegar.” This helps when I am dealing with hospital administrators who I want to strangle.

7. She is funny. I have a horrible mouth and swear all the time,  so every once in a while she calls me her “fucking daughter” just to make fun of me.

8. She is a good, good person. Many Catholics have suggested that she be canonized as the first Jewish saint. She is always giving of herself to help people in need. She does it without ego, out of pure compassion and love.

Happy Mother’s Day Nancy Rosenthal!

What is your mom like? What are the incredible things your mom does for you?

Whole Foods ain’t nicknamed Whole Paycheck for nothing. For young adult cancer patients (or anyone else with an illness) co-pays, medicine, medical debt, student loans, and time off work all take a toll on your cash flow - not to mention this whole recession thang.

I only shop at Whole Foods occasionally and am careful to buy the best bang for my buck items.  Here are my favorites:

1. Wild caught yellow fin tuna burgers, frozen
Because they are frozen they won’t go bad before I can eat them (spoilage is the worst waste of food money ever), plus most fish you buy at the market has been frozen anyway.  They are fast to cook, a nice hit of protein.

2.  Organic sausage
Expensive, but fast to cook, again a nice hit of organic protein.  I buy them for myself – Shannon eats the non-organic from Trader Joe’s – much less expensive.

3.  Organic Sale Produce
I buy mostly just a few sale items, but be careful in the produce aisle - there’s a difference between a sale and a good deal.  Example: regular priced organic romaine is way cheaper than on sale organic radicchio.  I also avoid berries - organic are too expensive - conventional too many pesticides.  Anti-oxidants? Show me a cancer study that was not on rats and made a truly significant difference with only a pint or two of berries.

4.  Spices
I usually use fresh lemon, salt, and pepper instead of spices but if I want to buy a spice, bulk at Whole Foods is the cheapest around.



5.  365 Brand Body Products
Walk the body care section with blinders on, by pass all the green-washed, pretty labels that will eat your wallet alive, and head straight for the 365 products.  They are very well priced and free of most skanky carcinogens like parabens.

Do you ever shop at Whole Foods or is it way beyond your budget?  Have you ever used food stamps at Whole Foods?  What are your favorite bang for your buck WF items?  Help me grow my list!

I’m a geek. Just the word ‘library’ kind of turns me on. So imagine how enticing it was when I was recently asked to choreograph a site specific dance performance set in what was the circulation desk for the old main branch of the Chicago Public Library. And here’s the kicker…. It is for a festival where all of the work focuses on disabilities.

So the question is do I have a disability if I have cancer?

I think most people with visible physical limitations are immediately categorized as having a disability. (And some of us cancer patients do have scars, amputation, baldness as a visual cue of our disease.) But what about chemo brain, or needing someone to take notes for you because you have neuropathy, or missing work or class for radiation treatments, or having to take frequent bathroom breaks? Do these limitations make us disabled?

Cancer legal advocates fought hard to get cancer and even our long term side effects included in the 2008 addendum to the Americans with Disabilities Act. Wahoo! I say forget the stigma of the label ‘disability’ or if you wanna be politically correct then go for ‘different abilities.’  Young adult cancer survivors spend a lot of time with broken hearts, financial mayhem, and employment barriers because of the ways our bodies live differently with chronic disease.  I’m damn glad when our hardships are recognized, given some rights, and a little bit of performance space.

Do you think cancer is a disability? How do you feel being called ‘disabled’ -does this label help or hinder? If you don’t have cancer, have you ever considered it a disability in others?  The model in the pic has a heart disease that caused the deformation of her arm.  So if she had no arm and cancer, does that change the story?  If she had an arm and cancer does that no longer make her disabled?

I have a horrible history of arguing with PETA (People for the Ethical Treatment of Animals) advocates, like the big Foie Gras debate in Central Park where the PETA volunteer almost clobbered me with her clipboard.

I now have another beef to pick with PETA. (Would you ever know that when I was diagnosed with cancer I had already been vegetarian for 14 years, vegan for seven? I do love cows and geese, it’s just these wactivists are absurd!)

According to the blog Disruptive Women in Healthcare, PETA is sending letters to the CEOs of major hospitals urging them to reduce their carbon footprint by eliminating meat as an option to patients, visitors and employees. I like the response of Glenna Crooks, the blogger who posted the story. She argued that transitions to meat free diets take time for our bodies and schedules to adjust to, and there is a learning curve for educating oneself about proper vegetarian nutrition.

I agree with Glenna. During and after a hospital stay is not the right time to throw another wrench into a patient’s already complex and life altering care plan. Hell, if some of us in cancer treatment or after surgery can manage to swallow a bite of boiled chicken or sip beef bullion, it is cause for a celebration not a PETA demonstration.

Hospitals should try to reduce their carbon footprint, but they should look to The University of Pittsburgh Medical Center as an example of how to do so through adopting energy efficiency standards.

Are you, were you, or would you ever be vegetarian or vegan? Do you think it is a good idea for hospitals to impose that dietary choice upon patients? What food worked best for you during cancer or other illnesses and could you have gotten by without a bowl of chicken soup?

In my book, I write a lot about being single and jealous of what I called those “married cancer bitches.” I also talk about now being one of them. Cathy Bueti is the author of Breastless in the City, a breast cancer memoir that focuses almost exclusively on dating and love. It hits the shelves tomorrow, so I thought I’d ask her about what it is like to write a whole book about cancer, romance, and intimacy:

What was the most satisfying part of writing Breastless in the City? What was the hardest part? The most satisfying part was knowing the potential my story had to help others. The hardest part was digging up all the emotional stuff that had been hidden away for so long. In some ways it was like reopening old wounds.

If you could turn back the hands on the clock and had control over your fate, would you choose to get a cancer diagnosis? Probably not. However, I am grateful for having gone through it because of what it taught me about myself. It also lead me to my husband and to all of the great people I connected with through the experience.

Did you have body image issues after treatment and how did you deal with them? Hell Yeah! It was very tough to deal with it. A diagnosis of breast cancer especially affects your sexuality so directly. I had to connect more with myself on an inner level in an attempt to separate from the physical stuff so I could see that who I truly am was still present. I still struggle with that.

What adjectives do you use to describe yourself as a patient? Challenging, inquisitive, and unfortunately anxious!

What is your cancer motto? A quote from Emerson I used in my book, “What lies behind us, and what lies before us are tiny matters compared to what lies within us.”

So readers, if you were to write a cancer memoir, how much of your book would focus on aspects of love, dating, relationship, sex, and body image? Have you experienced what Cathy talks about with connecting on an inner level to separate yourself from the physical experience? (I actually did some what more of that before cancer and less since cancer.) What is your cancer motto or three adjectives you use to describe yourself as a cancer patient?

I went to high school with a guy named Ram Gordon who is now a cardiologist. He has a great post today on the New York Times site in which he reminisces about watching ER with his roommates as a med student 15 years ago.

His post made me remember when as a kid and my whole family sat glued to St. Elsewhere on Wednesday nights, watching Mrs. Huffnagle’s death by hospital bed. Oh, Ed Bagley Jr. before his eco-trip. Oh, hot Denzel in his youth.

But I’m now jealous (only slightly) of my friends who have had a great Thursday night escape with what seemed like one of the few quality TV shows on air. Since my cancer diagnosis, I’ve tried watching ER many times, but couldn’t stomach the palpable reality of the hospital. It was as if I could smell the rubbing alcohol wafting off the screen. Great TV to one is post-traumatic stress to another.

Last month I rented Synecdoche.  I liked Charlie Kauffman’s other twisted and addictive movies, Eternal Sunshine of the Spotless Mind, Adaptation, and Being John Malkovich. But when Kauffman’s wacky brilliance mingled with the plot a theater director suffering from strange symptoms that shut down his autonomic body functions, it flashed me back to my life as a 27 year-old choreographer, when docs spent a year and a half trying to figure out what was wrong with my body before I received my cancer diagnosis.  Those were the days when I’d fall asleep in the morning on my cold bathroom floor after brushing my teeth because I couldn’t make it back to my bed. I turned Synecdoche off after 45 minutes.

Are you able to watch movies and TV shows about hospitals and disease?  If so, what are your favorites and why?  Are med shows and flicks comforting in their familiarity or do they hit too close to home?   Has illness or being a cancer survivor made you squeamish or desensitized?