March 10, 2009

What Would You Tell A Newly Diagnosed Patient?


Flirting in Bars

In today’s Huffington post I talk about 20 and 30-something cancer patients cramming for finals, flirting in bars, climbing the first rung on our career ladder, and changing stinky diapers.

In my interview with Christine Hassler she asks: If you had one thing to share with recently diagnosed 20 and 30 somethings that you wish you had been told, what would it be?

My Response

You do not have to become a glittery superhero in order to fight adversity. Cancer is hard stuff. Strength comes from being real. Allow yourself to sometimes feel vulnerable and to have meltdowns. They do not last forever and you may even feel invigorated afterwards.

Secondly, the definition of hope is fighting for your best care. Cancer is not only emotional and physical, it is administrative too and the burdens of paperwork can really impede our healing. Many hospitals have patient representative services or ombudsmen. If after your second try you are unsuccessful at getting records, obtaining procedural approval, or resolving a financial matter, have one of these professional advocates intervene on your behalf. Think, question, and shout when you need to.

What is one thing you would share with newly diagnosed cancer patients that you wish you had been told?

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March 09, 2009

Should You Write A Cancer Book? #2
Writing Mentors


A Chronic Dose
Laurie Edwards wrote a great post today about mentors on her chronic illness blog A Chronic Dose. An excerpt reads: “Persistence is a huge component of success in any field, but having people who are willing to share their time and expertise is, I’d argue, just as valuable. For as long as you keep evolving personally and professionally, I think you never outgrow the value of a mentor.”

For the second post in my ‘Should You Write A Cancer Book?’ series I want to look at the issue Laurie raised of mentorship and writing.

Confessions of a Novice
Many authors of young adult cancer books were journalists, editors, or freelance writers prior to their diagnosis. But what if you are thinking about writing a cancer book and have no background in the field of writing or publishing? How do you learn to write? Who are your mentors?

I was a choreographer when I was diagnosed with cancer at age 27. As an undergrad, I had taken one semester of creative writing from a sweet but utterly unconstructive professor. To this day, that class is the extent of my formal writing training. Yet, a few weeks ago a large sized publishing house just released my first book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s. Many mentors have gotten me to this stage in my new writing career, some more obvious than others.

My Big Three
1. My public high school English teacher Mrs. Kogut was an old fashioned type who wore a wool skirt suit and heels to work everyday. She docked one percentage point off of our papers for each grammatical or usage error. Everyone hated her. I ate her class up. She taught me the value of rules in writing.

2. My Dad and Strunk and White go hand in hand. My dad gave to me as a Chanukah present one year Strunk and White’s book The Elements of Style (glamorous huh?) My dad is a mechanical engineer. He is interested in efficient and sound construction, and latched on to a Strunk and White dictum: omit needless words. This is my top writing mantra.

3. Michael Denneny is a 35-year veteran senior editor from St. Martin Press, whose real life experience backed up the mentoring advice he gave me. The rejections my agent received from the first few publishing houses on my manuscript for Everything Changes could have been used as endorsement quotes on the book jacket: “Gripping stories.” “Excellent writing.” “Could not put it down.” Always followed by, “I’m sorry our publishing house cannot take your book. Our sales department feels that cancer does not sell.” Michael Denneny is responsible for getting published the first books ever written on HIV and AIDS. Following his lead, I never gave up on my mission to get one of the big publishers to believe in the need for, and the salability of, a guidebook for twenty and thirty somethings facing cancer. Michael and I were right. Many Barnes and Noble and Borders are selling my book faster than they can stock the shelves.

Writing Chops
Formal training is something missing from my resume– MFAs in Creative Writing or Masters in Journalism were not in my schedule or my budget after my cancer diagnosis.  Working in the vacuum of self-education often feels freeing because I don’t know what or who I’m up against: ignorance is bliss.  At other times, I’ve needed to grab a mentor because I’ve felt lost without a map.  In upcoming posts in my ‘Should You Write A Cancer Book Series’, I’ll investigate other ways to brush up our writing chops. Until then:

Have you ever formally studied writing? Who are your writing mentors or inspirations? If you do not have any writing mentors, where would you look for them and who would you ask? Are there any bloggers or authors of books on writing who you consider your mentors?

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March 09, 2009

Young Adult Clinical Trials 101 on the Stupid Cancer Show


The Flat Line
Most of us were either not born, sporting pampers, or wearing size 6X bell bottoms and Holly Hobby dresses when Nixon declared war on cancer. Since then, five-year cancer survival rates for peds and older cancer patients have risen steadily. However, survival rates for young adult cancer patients have seen zero improvement.

One of the culprits is our lack of access to health insurance (see my young invincibles schpeil!) But, another huge factor is our lack of access to clinical trials. Clinical trials study new and promising cancer treatments, providing access to cutting edge medication well before they are released on the market. Ready for another shocking statistic? Sixty-percent of pediatric patients participate in clinical trials. Yes, 60%. Only 1-2% of twenty and thirty-something patients participate in clinical trials.

Only now is the first ever large-scale clinical trial being designed to study a particular cancer type in young adult patients. This means that all of the cancer drugs that are infused or beamed up into our 20 and 30-something cancer ridden bodies have only been studied on folks the age of our parents and grandparents. Why is this a big deal? Their bodies are drying up, they have no periods, different hormone levels, and are experiencing middle and end of life health changes.

Life Saving Juice
While researching my book Everything Changes, I ate up Dr. Archie Bleyer’s study on barriers to clinical trial participation for young adult cancer patients. It may sound dry and boring, but this is actually the juicy information that can help extend our lives.

Listen tonight to the Stupid Cancer Show, at 9 PM EST when co-host Matthew Zachary and I will be talking about Young Adult Clinical Trials 101 with clinical trial experts Deborah Vollmer Dahlke and Ellen Coleman.

Have you ever participated in a clinical trial? What was that like? Have you wanted to participate in a clinical trial but it didn’t pan out for you? If so, what were the obstacles? What questions about clinical trials would you like me to ask our guests on the show tonight?

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March 04, 2009

Naked Cancer


In The Buff
I’ve been blogging and thinking about cancer and moms this week since my Monday night Stupid Cancer Show interview with Pat Taylor, filmmaker and the mother of a young adult cancer patient.

Today I dug up an outtake from my book, an excerpt from a conversation I had with young adult cancer survivor Chrissy Coughlin about moms. It opened up a different avenue of thought about nudity and cancer care. Here’s Chrissy:

“It was definitely strange when my mom was taking care of me and seeing me unclothed. But then I just got to the point where I felt very comforted by the care. It was like a job for her too. She had to do a lot of work and we had a little system down and you just kind of get over it. At first you’re like, “I don’t want you to see my boobies!” and then you just get over it. You just realize the most important thing is you have a mother there who cares about you that much to be able to help you in that way.”

I could totally relate to Chrissy. I felt the exact same way as I got used to my mom bathing me after surgery and when I was exhausted during treatment. But what about friends seeing me naked?

During treatments my sweat became radioactive. I was in isolation for five days and had to scrub myself down in the shower like the scene from Silkwood. It was exhausting. The day my isolation ended, I was too tired to shower. My friend Loren filled a pot and helped sponge bathe me while I sat on a towel on my living room floor. There was also a time when I was so feeble, my friend Anthony helped me to walk to the bathroom and get on and off the toilet. He stood a few feet away with his back turned while I peed.

In my work as a modern dancer and choreographer, I was used to quick costume changes in make shift dressing rooms crowded with men and women. I also lived in crunchy Boulder” for a while, where it ain’t no thang to strip down naked and hop in a hot tub at a party. I think this made it a bit easier for me to be naked in front of some of my friends during cancer.

Have you ever had to be naked in front of friends and family so they could care for you? What was it like? Did it flip you out? Comfort you? Are you any more or less modest since cancer?

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March 02, 2009

Vicodin Earrings

Surfing online, I came across this great work by 20-something Becky Stern. It is an embroidery from an MRI of her kneecap. On her website I found earrings she made out of Vicodin, a plush stuffed animal-like version of her femur, and a copper band aid. I was captivated and interviewed her a bit more about her art.

Q: What medium do you like to work in the most?
A: I don’t have a favorite medium. I tend to prefer craft processes, but
also dabble in electronics.

Q: What subject matter fascinates you?
A: I’m really interested in our relationships with technology. A lot of
my work draws this. I also think it’s really neat how low tech things
like knitting can relate to digital images (stitches and pixels,

Q: So what was up with your leg? Why did you have surgery?
A: I have bad genetic knee anatomy. My shallow femur grooves mean that my
kneecaps dislocate a lot. This time it took out a piece of cartilage
with it. It felt like there were shards of glass inside my knee before
the surgery.

Q: Some people would be grossed out by pics of their surgery. Seems like you are not. Have you always had a strong stomach?
A: My first knee surgery was when I was 8. I had another when I was 14.
So I guess you could say it grew on me. I’ve never liked it when
doctors could see parts of my body that I couldn’t, so I just ask them
for a copy of my MRIs, x-rays, surgery pictures, etc. I even have my
wisdom teeth and knee screws (that had to be removes) in an envelope.
The pictures from this last one do gross me out a little bit, but I
like to play on the grossness factor a bit in my work. The plush femur
is cute and at the same time gross.

Q: Do you plan to make other medically related pieces?

A: I’ve been working on a series of embroideries from my MRI images, and
I’ve made some band-aid earrings as well as some earrings made from my
leftover Vicodin tablets (I can’t take the stuff, it turns out it
makes me sick).

What about you guys reading this post? Do you ever have daydreams, real schemes, or actual artwork, plays, films, sculptures that you’ve made about your illness? Have you seen other illness related artwork that has stayed in your mind? Any work by young adult cancer patients?

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March 02, 2009

Parental Low Down and Stupid Cancer Show


Wake Up Call

I call my mom in the middle of the night when I cannot sleep. She is always there to answer no matter how groggy she is or how early she needs to drag herself out of bed the next morning. We’ve always loved each other but were not always close like this, especially when I was younger and got caught stealing make-up from G.C. Murphey’s drug store on the day of my Sunday school confirmation. Or when I dropped out of Columbia University to study with modern dance choreographers around the country.

So what has changed? Is it that I’m less bratty now that I’ve gotten my teenage and early twenties angst out of my system? Is it that she is more laid back now that I’ve matured? Or did my young adult cancer diagnosis bring us closer together? During surgery and treatment, she spent weeks in my shabby (not so chic) studio apartment, crashed out on a futon on the floor. And while we are closer now than ever before, there are still parts of my cancer experience that we have a hard time talking about. Only recently did she confess to me some of her challenges in taking care of me during that time.

Chime In

I’ll be blogging more about cancer and our parents in the next couple of weeks. But for starters listen and call in tonight to the Stupid Cancer Show, (347) 215-6845, at 9 PM EST when Matthew Zachary and I will be talking with Pat Taylor, digging up the inside scoop on being the mom of a young adult with cancer. Pat made a documentary film about young adult cancer, called Chasing Rainbows. Check it out here.

Has cancer changed your relationship to your mom, dad, or other close family member? What issues/questions would you like to see discussed about this in upcoming blogs? Maybe I’ll bring my mom on as a guest expert!

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February 26, 2009

Cancer Makes Me Feel Like A Twit


Superficial Twit

There have been times throughout cancer where I have the intellectual capacity of a three-year-old and my attention span is nil.  I’ve tired of reading mind numbing glossy mags, yet could not surmount a thick biography or engaging book of history if my life depended on it.  Is there hope for a young adult cancer patient beyond feeling like a superficial twit, glued to television and waiting room copies of People Magazine?  Yes.

Dixie Cups, AIDS, and Georgia O’keeffe

Letters of The Century 1900-1999 is the perfect book for tired, weak cancer patients who are devoid of short-term memory, but still yearn to get their intellect up.  Broken down by decades, the first few pages of each chapter runs a bulleted list of the major cultural, political, and economic events: “The Dixie Cup and electric toaster appear.”  “Vermont widow Ida May Fuller receives the first Social Security Check – for $22.54.”  “The space shuttle Challenger explodes 73 seconds after lift off, killing seven astronauts aboard.”  The meat of the chapters are comprised of letters that speak to the times of that decade:  Profound letters, love letter, irate letters, letters to the editor, apologies, friendships, governmental exchanges. Voices are as wide ranging as Booker T. Washington, Georgia O’Keeffe, Richard Nixon, and the mother of an AIDS patient.

Letters of The Century is a chunky book to tote to chemo, yet in paperback, well worth it. Keep it by your bedside to read slices of history while you are waiting for a wave of nausea to subside or for your Ativan to kick in.  It’s the kind of book you can read from beginning to end, or pick pages randomly.  Best of all, each letter is only about one-quarter of a page to two pages long. This is history made convenient.

Click here for other Time Flies Tips

Do your cancer, chemo, or treatment side effects ever make you feel dumb as a stump?  Has cancer or other illness interrupted your reading habits?  What do you tend to read when you are sick?

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February 25, 2009

The Flu and Sweating Bullets


It is flu season.  Everyone has the flu.  I don’t, but having just typed that, the tiniest threat of superstition is upon me and I’m afraid I’ve jinxed myself.

I think to many outsiders, the flu might seem like nada compared to having cancer.  In the grand scheme of things it is.  But my physical body doesn’t really live in the grand scheme of things.  Joint pain, chills, fever, and nausea happen in real time, not ‘grand scheme of things’ time.  In fact, sometimes I think having the flu is worse for me since my diagnosis because it resurrects so many bad memories.

Since cancer, I better understand the concept of post-traumatic stress disorder.  For some patients the smell of rubbing alcohol or the sound of shoes on linoleum bring back horrible memories.  Prior to my treatment, I had a three month long fever as a side effect from a preparatory drug. Having the flu careens my body back into those three months.  I feel like I am approaching the terrifying prospect of treatment.  In my mind I know I’m in present time, I’ve got the flu, I’ll recover, but my body is totally disconnected and heads straight for a five alarm panic attack.

Now, at the slightest sign of the flu – aching skin, a twinge of joint pain, sudden change in my body temperature – I don’t reach for vitamin C, Thera-flu, Echinacea, zinc, or Tylenol.  Instead I crack open my big orange bottle of xanax.

If you are a cancer patient, what is it like for you to have a common cold or flu now?  Any easier or harder than before cancer?  Does being sick make you anxious?  Do you ever feel symptoms of post-traumatic stress disorder?  If so, what triggers it?

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February 24, 2009

This Time’s A Charm


You might remember Donald Wilhelm from the blog post ‘Should You Write A Cancer Book?’ He’s back today musing on the nasty little subject that none of us want to think about but some of us have to: recurrence. Donald’s new book This Time’s a Charm: Lessons of a Four-Time Cancer Survivor tells his real-life story from a patient’s perspective about surviving cancer four times.

Q: What is the stupidest comment someone said to you when you told them you had a recurrence?

A: Most people are sympathetic, but I have heard several times, “Well, at least you know what to expect.” Not helpful and unlikely to make it onto a Hallmark greeting card.

Q: When you meet recently diagnosed lymphoma patients do you reveal how many times you’ve had recurrences? If so, do you worry about scaring them?

A: I often go back and forth on this topic, especially if they’re Hodgkin’s patients. Overall, I usually tell them because it seems to put most people at ease. Most folks want to know that someone has had it worse than they have it.

Q: Did you ever have friends who disappeared when you were first diagnosed but were there for you during subsequent recurrences?

A: Yes, that does happen often. Some folks are just not comfortable with their own mortality, so being around someone who’s facing a challenge makes them uber uncomfortable. I don’t judge them though, because their reaction is simply a symptom of our society’s overall issues with death.

Q: How has your relationship to science changed with each diagnosis?

A: It has ebbed and flowed. At times I watch the latest studies into things like stem cell research and monoclonal antibodies. And with other recurrences, I just trust in my own body and my oncologist to kick its butt today with drugs we have now. All in all, it may likely end up being a combination that finally does the trick for me.

Donald’s book takes a detailed look at dealing with lymphoma recurrence. To buy a copy visit his website or Amazon.

Have you ever had a recurrence? If so, how would you respond to the questions I just asked Donald? Are your responses similar or different from his? What is the stupidest thing someone has said to you?

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February 23, 2009

LGBT Young Adult Cancer

Odd One Out
When I was diagnosed with cancer, I lived in San Francisco.  I attended a young adult cancer support group with my great friend and co-cancer patient conspirator Seth Eisen.  Even in San Francisco, queer capital of the world, Seth was the only gay man in our support group.

A few years later, I interviewed Seth for my book Everything Changes.  I hunted endlessly for LGBT support services and advice specific to 20 and 30-somethings to include in a resource section that followed Seth’s chapter.  I turned up zilch.  To write this section, I grilled advocates at major LGBT healthcare organizations on issues that they had never thought about before: the difference between being young and old with cancer.  I’m a married straight woman and was stumping the LGBT community. Something is wrong with this picture.

The only way we will expand support of underserved segments of the young adult cancer community is by striking up good dialogue.  Listen and call in tonight to the Stupid Cancer Show, 9 PM EST when Matthew Zachary and I will be talking with Darryl Mitteldorf about young adult LGBT cancer issues.  

Whether you are gay or straight, what kinds of questions would you ask Darryl on the show tonight?  If you are an LGBTYACP, what are some of the biggest barriers you face as a young adult patient?  Do you feel comfortable being out in the medical environment?

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