May 09, 2009

Happy Mother’s Day Nancy Rosenthal


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?

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May 08, 2009

Best Bang for Your Buck at Whole Foods


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!

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May 07, 2009

Is Cancer A Disability?


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’ -d
oes 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?

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May 06, 2009

Cancer vs. PETA


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?

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May 04, 2009

Married Cancer Bitches


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?

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May 01, 2009

TV, Movies, and My Cancer


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?

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April 29, 2009

Cancer and The Environment


As a teenager I made out in abandoned factories, where mysterious steel drums leaked on the floors and industrial grime came in all colors and textures. I guess high schoolers in farm country drink Boonsebury and go cow tipping, but in Pittsburgh, we smoked pot on slag heaps.

Did growing up amid Pittsburgh’s steel town relics contributed to my cancer? And more importantly, how do I reducing my current exposure to carcinogens. This is the subject of my guest post featured yesterday on Blue Planet Green Living.

Survivors and healthy folks alike are focusing heavily on how to be more green, but going green is not just a consumer lifestyle trend; it is a public health issue that will never be solved one eco-purchase or CFL at a time.

Let’s face it, shopping for organic sheets at Bed Bath and Beyond is way more seductive than educating ourselves about coal fire power plants or vehicle emissions standards. But buying more crap – even if it is eco-organic crap still makes a negative impact on the environment. As young adult cancer patients, often with low incomes and medical debt, we are better off resisting most eco-marketing and buying less in general.

Indoor air quality is a major health issue and choices about the chemicals we eat and wear are important. But as a cancer patient, I’ve gotta look beyond my consumer habits and stop ignoring the big enviro-elephants. My eco lip gloss does not matter if toxic power plant emissions are drifting in the wind.

Do you think something in your environment when you were a kid caused your illness? Are eco-products affordable for your budget along side healthcare costs? How do you decide what to buy? Are you enticed by beautiful, hip, enviro marketing? Do you know what a coal fire power plant is? Is environmental policy interesting to you, a bore, does it matter?

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April 26, 2009

Cancer and Saying ‘Thank You’


“What’s the right way to thank friends for their help and to show my appreciation?,” asked Garnet, a survivor, in the comment section of my last post (Cancer and Friendship). Her question evoked the words of Richard Acker, a 36-year old stage 4 colon cancer patient in my book.

“When we receive help, it is clearly benefiting us, but it also gives some benefit to those who are helping us. They feel good, it makes them happy, it helps them to express their love for us in a concrete way.”

I agree and believe that when you receive help while you are ill, you don’t have to do anything other than say, “Thank you.”  I haven’t always followed this rule though.  Especially after treatment, when I made big thank you gestures – mostly in the form of dinner parties where I unleash my inner Barefoot Contessa.  My desire to thank came not only from my genuine gratitude, but also a bit from the guilt of feeling like I was an imposition, and a tad bit from shame that I needed help to being with.   Thank you gestures made the help I received into something reciprocal, which made me feel less like a sick cancer patient.

But I’ve come to think of that attitude and the need to do something thankful as bullshit.  Why?  Because I AM a young adult cancer patient and I WAS sick. This is not an equal, reciprocal exchange.  When we are down and out we need help.  When I graciously accept assistance without reciprocating, I am humbled and reminded of how helpless I am sometimes.  This is not a bad thing.  In my eyes, this is part of getting real with what it means to live with cancer.

When I do something for someone else in need I don’t do it because it makes me feel good or because I want something in return.  I do it because I love someone or care about helping to alleviate suffering in the world (that sounds kind highfalutin but it is true.)  When someone helps me, I hope this is also their motive.  Now, when I’m sick and need help, I simply show my gratitude by saying “Thank you,” it feels really right.

What is it like for you to accept help?  Do you ever feel guilty doing it?  Do you feel like you have to give back and do something?  Does it make you feel weak to accept help or does it empower you to recognize your limitations?  Have you ever done something for friends and family to thank them for helping you during an illness?

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April 22, 2009

Cancer and Friendship


As young adult cancer survivors we big time need to kvetch about our friends who say stupid things to us (like: “In a way you are lucky you have cancer because now you don’t have to worry about whether you will getting it.”) But do we also spend enough time praising and gushing about our friends who totally understand us?

On Monday, Tara Parker-Pope referred to an article from the Journal of Clinical Oncology March 2006, which studied 3,000 nurses with breast cancer and showed: “Women without close relatives, friends, or living children had elevated risks of breast cancer mortality compared with those with the most social ties…. Neither participation in religious or community activities nor having a confidant was related to outcomes.”

When I was diagnosed, I sat on my bed and told my friend Nicole.  She shed all pretense and sat and cried with me.  It was the best response to my cancer I ever had.

During my treatment, Rachel, a casual acquaintance, adamantly wanted to help me with my mounting housework. A busy woman, she multitasked and on a first date brought the guy with her to my apartment to wash dishes. She threw a dishtowel at him and told him to dry.  They were not together long,  but she and are now close friends.

My friend Heather is amazing. Once when I was having a weird cancer period, she let me show her my used pad so we could talk about the color of the blood. Friends don’t get better than that.

Lifting loads of laundry to keep our staples intact, scrutinizing doctors for us, letting us cry into the phone so we can sleep better at night and fight our fatigue. This is what good friends do. I don’t know if in every instance friends help reduce our mortality rate, but the good ones sure as hell can improve our quality of life.

What great things have your friends done for you during an illness? Who has made you feel less lonely, more loved? (Do I sound like Delilah yet?) Who is by your side when your health is grizzly and you are freaking out? Has your support ever come from unlikely friends, or people who you weren’t that close to before cancer?

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April 20, 2009

Cancer Disclosure, Privacy, and the Grapevine


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?

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