Everything Changes - The Guide to Young Adult Cancer

I did not have a public blog until after I was done with treatment and had already written the entire manuscript for my book.  I have a lot of grim and foul thoughts about cancer and its impact on my life.  These thoughts are not on this blog.  They are in 12 spiral bound notebooks in a big storage box in my closet.  And I intend for them to stay there.

When I was going through treatment I never thought about journaling as a task.  The word alone conjures images of haggard ladies sitting around a  new age bookstore with purple notepads on their laps scribbling experiences that I’d rather not know about.  So, no, I did not journal.  I just spewed thoughts on the page at all times of day or night.  My notebooks did not contain full sentences, fleshed out ideas, nor a sense of composition. Most of my handwriting was illegible.  I was just trying to survive and my instinct was to put words on the page.

I love being a blogger and an author and using the screen and page to share ideas, resources, personal experiences, and coping tricks and tips with other young adult cancer patients.  But the best advice I have for any cancer patient wanting to write is to have a separate writing space where you don’t have to think logically, where no audience is present, and you can let the shit hit the fan in whatever way it wants to.  In a culture where the need to share via twitter and facebook is often a compulsion, it is quite peaceful writing for nobody but yourself.

I have spent the last six years reading, researching, and writing about cancer.  I am so fulfilled by this work, but sometimes I wonder if it is always the healthiest choice of how to spend my time.

My cancer has never been in remission and it could be with me for a long while yet. Cancer is an uninvited companion in my body, but that doesn’t mean it always has to be on my mind.  Usually my expertise about young adult cancer seems like a great asset that benefits my own care and helps others too.  But lately I’ve been wondering if I have built a little cancer trap for myself.

Right now I have the luxury of feeling well.  I don’t look or feel like a cancer patient, but I think and write like one.  What would I write about and how would I spend my time if I moved cancer from the front burner to the back burner in my mind?  I don’t even know the answer to this question. And that’s a bad sign. Perhaps while I’m feeling well, I should focus a bit more on the world beyond cancer.

So I’m giving myself a little assignment.  For the next few weeks, I’m going to write one post per week that is not about cancer.  Just for the hell of it.  Just to break my little addiction to the small world of illness I’ve built up around myself.  I hope you’ll still read and comment as I experiment with the great beyond.

Do you ever feel like you need a break from focusing on illness or that it consumes too much of your identity? Do you volunteer for cancer organizations, work in the healthcare field, blog or write about illness on top of being a patient too? I’m taking requests: What would you like me to write about in my non-healthcare posts?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about coping with life beyond illness.

A great part of being an author and blogger is all of the emails I get from readers who I never would have met otherwise.  Rich Devlin is one of those people.

Rich sent me a riveting poem a few weeks ago called The Price of Survivorship, which you can read below. He recently lost his wife of 38 years to breast cancer, and lost both of his parents to cancer too.  He has two young daughters for whom he is “scared to death.”  I’m curious to hear your response to his poem.

Have you ever written poetry during your or someone else’s illness?  Do you have any favorite poetry or poets that you read to get you through the rough times?  If you have any favorite poems, written by you or another poet, please leave them in the comment section for me and others to read.  Come on Luke, I know YOU do!

The Price of Survivorship

Slides
d i s s o l v e
one
after
another
headless, legless torsos
prophylactic
r e c o n s t r u c t i o n
before & after surgery
latest techniques unveiled (proudly)
with clinical precision (emotionless)
silicon or saline (choice)
risk of rupture (real)
possible asymmetrical results (very fine print)
abdominal incision (aka. “tummy tuck”)
Tattooed areolas (optional)
Synthetic nipples (possible)
necrosis (occasionally)
mounds
of
molded
flesh
devoid of feeling.

For me, there has always been a strong dividing line between art for therapy sake and art with a capitol A.  The difference is an audience.

I gushed my cancer story into 12 journals during treatment.  Scribbling in a notebook was great for getting cancer angst out of my system.  But hammering out these rants was a quite different process, and created a different product, than crafting the manuscript for my book Everything Changes.  One had an audience, the other did not.

Recovering from surgery, two summers ago, I was doing a choreographic residency.  Blasting Led Zeppelin and stomping around the studio with my stiff, post-surgery neck helped me accept my incurable cancer.  But improvising in the studio was a very different act than choreographing the ballet-opera that became the final performance of my residency.

At times being an artist with cancer is a mind f***.   The cons: I want to write and choreograph about something other than my disease, but cancer so often enters my work even when I don’t want it to.  I also hate when people assume that my cancer was a great artistic opportunity.  I was a damn creative person before my cancer and didn’t need this diagnosis to provide content for my work.  Nor do I want an audience to feel cornered into empathizing with my experience of being ill.

But there are also pros: A life in the arts prepared me for how to live very frugally - helpful when you are young with a pre-existing condition.  I’m a really expressive person – quite useful when you are trying to communicate with doctors, and friends, and family about your needs.  And, I have a job that is fulfilling and provides a major distraction from thinking about cancer.  Well…. except for the fact that I keep writing so much about cancer.

I yearn for an art project, craft, or a hobby that is totally unrelated to health.  Some days I wish I knew how to knit.  But I fear that if I did I’d just end up knitting hats for chemo patients.  After treatment, I took a class in techniques for transferring photographs onto fabric.  I have never done anything at all with this artistic skill.  What a remarkable, relaxing relief.

Do you have any crafts that distract you from your cancer?  Is your profession related to cancer, illness, health care?  If so, how do you find balance?  Do you enjoy seeing or hearing music or artwork made by artists with illness, or is it not relevant to you?

Listen tonight to the Stupid Cancer Show when I interview artists and cancer patients Seth Eisen and Christina Falise.

For more about my life in the studio with cancer, read my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

The notion of writing a letter to a body part of mine has always given me the heebie-jeebies. It reminds me of the scene in Fried Green Tomatoes when the gals crack out mirrors and befriend their coochies. Not up my alley.

But this request was different. It came from a fantastic website called Dear Thyroid, and there’s nothing cheesy or touchy feely about it: Two smart gals with thyroid disease toss out themes for reader rants that start with “Dear Thyroid.” Yesterday they posted my letter called Thycotic.

In my letter I asked my thyroid why after nine years people around me are still so curious about what caused my thyroid cancer. My suspicion is they want to know so that they can figure out how to not get what I’ve got. I wrote:

“If we truly understood the mechanisms that caused cancer, wouldn’t we be much closer to finding a cure? I’m not talking an RAI cure, I’m talking the kind of cure that makes you not get cancer in the first place. We are nowhere near there. Unexplained cases of thyroid cancer are skyrocketing (it is the fastest growing incident rate out of every kind of cancer in the United States.)

So my friends and family are going to have to shiver wondering if it will happen to them too. Because the truth is that it just might. Not cool news. But when you are facing nine years of thyroid cancer, the truth is less painful than sugarcoating. And I’m kinda learning to love life that way.”

I think from an epidemiological perspective it’s way important to study causes of cancer - environmental, genetic, and otherwise. But regarding what caused my individual case – it never really mattered to me. I’ve got what I’ve got. The question is what am I going to do with it?

Do you wonder what caused your cancer? Is it a curiosity, an obsession, have you done research? Do other people want to know what caused it? If your cancer is genetically based, what is it like to think about that?

For a great story about how Mary Ann handled her mom obsessing about the cause of Mary Ann’s lymphoma, read ‘It Girl’, Chapter 9 of my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Also tune in this week to The Group Room Radio.  I’ll be a guest along with Dr. R. Michael Tuttle of Memorial Sloan-Kettering Cancer Center, talking about thyroid cancer in young adults.  Call us on air with your questions.

My surgery was on Halloween.  I wore a tiara and red heels to the hospital.  That’s easy to remember.  Ask me the date or year of my diagnosis and I have no idea.  Cancer has fried my inner calendar.

Daily on Planet Cancer and Facebook I see young adult cancer patients celebrating their cancerversary. My cancerversary doesn’t mean much to me.  Maybe it’s because I’ve never been cancer free so there is no end with which to book mark the beginning? Nah, I think  I’m just more focused on the day to day than the milestones.

Yesterday, I wondered how long ago I started this blog.  I looked it up.  June 3rd.  Exactly one year.  So, I want to dedicate this post (can you say Delilah?) to my fantastic friend Lisa Friedman.  She hounded me for about two years to start a blog.  I was totally resistant.  What would I have to blog about everyday?  I found her nagging irritating and she probably found my excuses pathetic.

Well, Lisa, a year later I’m addicted to blogging and I thank you.   I have more to blog about than my time allows: I’m finishing posts and series on medical debt, cancer and parenting, patient bills of rights, and  the taboo topic of cancer and domestic violence.

Thanks to all of you readers for your brazen comments and sharing your vulnerable experiences.  Without you this would be a one sided conversation and instead it is so much more.  Happy blogoversary to us all.

Do you celebrate your cancerversary?  What would you like to see me blog about during year number two?

Breastless in The City
I’ve started a series about cancer and writing. (See #1 about self publishing, and #2 about writing mentors.) This post is about different size publishing houses.

Five years ago, with no formal training, breast cancer survivor Cathy Bueti wrote a book about being a young widow dating through cancer treatment. She landed an agent (we’ll cover that in another post) and they shopped her book around.

Cathy writes: “My agent eventually got an offer from a small, one-year-old press that published medical guides and wanted to expand into the trade market. My book was a good fit. I hoped for a big house, but as a newbie… I accepted the offer.

“Breastless in the City was published in 2006. In 2008 my small press publisher left the biz and sold the company. A few months later my title, along with other books of theirs, was acquired by a large publishing house. With the large house, a new editor and I worked for six weeks revising the manuscript to bring my story to a wider audience. The new edition of Breastless in the City will be released this May in hardback.”  (You can pre-order it now on Amazon.)

Here are some of the main differences Cathy found between the small press (SP) and the large publishing house (LP):

Editing Process
“The SP edited my manuscript and asked for my input. With the LP, the editor and I worked together editing chapter by chapter adding more scenes, background info, dialogue, and content about my life after cancer. It was emotionally difficult to dig into this deeper, raw content, but it added much to the story.”

Distribution
“I thought my book would be on the ‘new arrivals’ table at bookstores. Not so. Stores want to stock their shelves with sure sellers.  Your publisher has to ‘sell’ the idea of your book to the store for them to even decide to carry it.” (A note from Kairol here – Publishers have to pay big bucks for table space in stores. I’m psyched that my publisher just did so for my book, but not every publisher has the cash or desire to, and extremely unlikely that a self-published author can afford it.) Back to Cathy:

“With the SP, Breastless in the City was in a few Barnes and Nobles in NYC, my local store, plus a few others. I had to create a demand; not easy as an unknown author. The first edition sold about 800 copies.  My LP has a special sales department that helps with distribution, so that is quite different already.”

Marketing Promotion
“The SP gave me more individual attention but had no in-house marketing department, nor the funding to push sales. At the LP, I am in close contact with their in-house marketing department.”

“In both places, a lot the promotion falls to the author.  You have to hit the pavement, connect with others, and spread the word by reaching out to organizations, survivors, blogging, and connecting on the internet.”

Do you journal/blog about your cancer experience? Have you ever worked with an editor or thought of having someone edit your work, even a friend or family member? Does having an editor’s eye seem frightening or exciting?

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?