Everything Changes - The Guide to Young Adult Cancer

I was on myplanet today and read a member’s status “I am trying to get a hold of myself.” I think we can all relate to this if we are dealing with a cancer diagnosis, chemo, radiation, waiting and watching, or another illness, or any kind of life fiasco, such as unemployment.

I spent two days on the Yakama Reservation with young adult cancer survivor Holly Anna DeCoteau Pinkham. (Some of you know her from Planet Cancer and LAF too.) I included the juiciest parts of our conversation in my book. Here is piece of HollyAnna wisdom that really stands out to me when I think about getting a hold of my life:

“Sometimes when I’m starting to crash, I go to the mountains and watch the water. Water doesn’t fight its way down the hill. It takes the path of least resistance. Still, there are rocks in the water, and that is how I look at cancer. It’s a rock. I’ll go around it, over it, under it if I can. I’m not going to fight it. Instead, I’ll let it figure out how it is going to guide my path. You have to figure out how to work with the momentum cancer establishes in your life. Otherwise, you’ll drive yourself nuts. So I have to go up to the mountains, and I remind myself that I’m like the water.”

“Fight” has become the mantra of the cancer world. I love that HollyAnna steps out of the boxing ring and ditches the “fight” while remaining an empowered, intelligent, and all together kick-ass patient.

Where do you go when you need to get a hold of yourself? (I love being a big imposing library, getting lost in it all.) What centers you or calms you? Do you have metaphors like Holly Anna’s water that get you through? Have you ever thought about not fighting? Does that scare you or give you more energy?

This Saturday in Boston, I am going to try to be verbal with a room full of folks at 8:30 AM. It could be dangerous, says my inner night owl.  I’ll be talking about the lessons I learned while traipsing across the United States interviewing young adult cancer survivors for my book Everything Changes.

I’m  keynoting a great young adult cancer conference called I’m Too Young For This. (A hauntingly familiar name, no?) There are still a few slots left for registration at youngcancerconference.org. The conference is free and is going to be a blast. Break out sessions will include juicy YA topics like singles and cancer, nutrition, mindfulness, caring for the caregiver.

If you cannot make it to the conference, but are around that evening, Matthew Zachary is arranging an i2y Boston Cancer Happy Hour. I don’t have the 411 at the moment to post the details, but if you are interested, shoot me an email: kairol[at]mac dot com and I’ll get you the info. ASAP.

Saturday | April 4, 2023
8:30 am - 3:00 pm
(breakfast & lunch provided)
The Conference Center of the Carl J. and Ruth Shapiro Cardiovascular Center at Brigham and Woman’s Hospital
75 Francis Street, Boston MA 02115

Register:
youngcancerconference.org

Sexy Librarian
If you’ve been reading my blog or my book you know I’m a total geek for hardcore legal resources and factual information. (One of my alter egos: sexy cancer law librarian.)

Last month, a family member was in the hospital and I was seriously displeased with the administration. I called a meeting and sat down with the CEO of the hospital and his posse and read them a riot act, peppered with a few key nuggets of healthcare legal knowledge. Not only did I get what I wanted but, when I left they all said, “We had no idea you were a lawyer.” My reply “I’m not. I’m a cancer patient.”

My motto is ‘Think, question, and shout when you need to.’ You can do this quite effectively with a little bit of legal knowledge under your belt. So, stop thinking of healthcare law as a nightmare, and start using it to your advantage.

The Stupid Cancer Show
Listen tonight to the Stupid Cancer Show, at 9 PM EST when co-host Matthew Zachary and I will be talking about recent updates to the law that affect young cancer survivors. Our great guests are Joanna Morales, Director of the Cancer Legal Resource Center and Paula Pearlman, Executive Director of the Disability Rights Legal Center.

Do the words “healthcare law” excite you or make you want to run? Have you ever stated your rights or referred to a law in a medical setting? What were the results? What legal questions would you ask Paula and Joanna?

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?

Vote Now: Should I Delete Spaz as A Friend on Facebook?

I’m not trying to go 6th grade on us; I think this is a great topic up for grabs, with a friend who never minds public exposure or controversy (or at least he didn’t 20 years ago; maybe we’ve changed since high school!)

Tuesday night I posted on facebook “Kairol Rosenthal is debating with Shannon about how much money doctors should make.”

Spaz commented on my wall – he’s a high school friend, with whom I used to watch John Hughes movies, attend peace rallies, and kiss in the park.

Spaz wrote “… You used to be into music, movies, activism and all sorts of other things. Is medical stuff and malignant masses really all you are into now? … It’s like people are born again and only talk about Jesus. If this is annoying or rude, delete me as a friend and I’ll understand. Otherwise. Weren’t you married recently?”

Mr. Malignant
Comments went up on my wall defending me, calling him malignant. But Spaz raised a good question that others wouldn’t dare to. Here’s my reply:

Medicine is the central issue of our time; talking about it is activism. Health care impacts the financial status, productivity level, and quality of life of most Americans.

In the last 6 months, I haven’t touched the Arts section of the Times; I used to drink it in. Instead I read about doctors’ pay, pre-existing condition regulations, and a proposal to split FDA in two. These issues profoundly impact on my life, and yours too Spaz.

I get the born again analogy, and could reply, “I have no choice but to talk and think about healthcare. I’ve got cancer.” But that’s bullshit. I have a choice about where my mind goes, and lately I’ve been questioning the direction. Have I had a day in the last three months where I didn’t ruminate on health care? No.

My Bagels and Pajamas
Patients across the country call and email me daily about insurance, getting second opinions, financial resources, and cancer. I love that I, and my book, can help people.

Some days it’s taxing though to be all about cancer, like today when I am just sad and pissed off at the insidious, malignant tumors in my neck. I tell myself to stop the health care chatter: take more walks, watch more ballet on You Tube, write facebook updates about my breakfast or that I’m still in my PJ’s at 1:57 PM.

But who gives a shit about my bagel or PJ’s? Perhaps nobody cares about how much doctors get paid either, but I think we should. We can’t complain about health care if we aren’t educating ourselves and to be part of the solution.

So yes, Spaz, I’m married to Shannon Fisk, an environmental attorney for NRDC. We don’t want kids, love our dog, are total geeks and night owls, and live in Chicago, but wouldn’t mind moving to New York. Last night we climbed into bed, debating if convicted murderers should be allowed to study and practice medicine after serving their sentence. Conversations like this are my passion, just like music, photography, or gardening is for others. I’m damn lucky that I’ve become a healthcare author, and that something I love (and loathe) so much has become my profession.

How would you respond to Spaz? Would you delete him or not? Do you think about your health more than you would like to? Do you discuss health care issues with friends who aren’t young adult cancer survivors?

Do the words “yoga healing” conjure images of spa-like relaxation, chiming bells, and waterfalls? This nirvanic bliss may be the end result, but any proactive patient knows that even when it comes to alternative medicine and yoga, a lot of hard work goes into creating a good, safe, personal practice.

How do people living with cancer and other chronic illnesses evaluate alternative medicine practices such as yoga? What exercises and yoga postures are safe for cancer patients? What’s the difference between Ashtanga, Iyengar, Birkam, and restorative yoga, and what form of yoga is best for cancer patients? How can you find a studio that is friendly to cancer survivors? How often should you practice yoga and will it be affordable? What kinds of exercises can young adult cancer survivors do at home?

Listen tonight to the Stupid Cancer Show, at 9 PM EST when co-host Matthew Zachary and I will be talking about yoga and cancer with experts Kelly McGonicgal, Editor in Chief of The International Journal of Yoga Therapy, and Halle Tecco founder of Yoga Bear.

Have you engaged in yoga as a cancer survivor, or someone living with another kind of illness or disability? What was your experience? Was it a physical practice, spiritual practice or equal amounts of both? Did you create a regular routine of going to class or practicing at home, or was yoga more of an off and on activity for you?

Good News
I went to Memorial Sloan Kettering on Thursday and had excellent news: My tumors are stable, they have not grown (ye-haw)! I have to wait for the blood tests to come back next week to confirm. It made me think about this:

You’re leaving the doc’s office after a blood draw, a pap smear, or depositing some other bodily byproduct, and the doctor says, “We’ll call you in a week or two if something is wrong.”

You go home biting your fingernails and don’t know when to stop. Are the results in but they didn’t call because everything is fine? Or is there a slip of paper that says “You are dying” that fell behind the nurses’ desk and got chucked in the recycling bin by the nighttime custodial staff?

Caller Number #1
Even if your head does not dance with these neurotic visions, even if you have the utmost confidence in the administrative functioning of your doc’s office, never accept the pat answer: “Don’t call us we’ll call you.” Part of being a proactive patient is staying on top of your test results. In the medical system, small administrative errors can have major health consequences. It is simply good practice to call relentlessly until you have a definitive answer.

Do you get nervous waiting for routine test results? Do you trust them to call you back? Are you aggressive? How does the office staff treat you when you are persistent in calling for test results? Are you ever too intimdated by your doctor or their staff to ask for what you need?

In my post from yesterday, I asked the question What would you do for health insurance?  Lie, cheat, steal?  This weekend, the Chicago Tribune ran a story about Mariana de la Torre, a 28-year-old cervical cancer patient.  With no money, and as an illegal immigrant with no access to government benefits, she used a stolen identity to procure medical treatment.  The identity was that of a woman serving a sentence in a Texas prison.  Mariana used the woman’s name and social security number to obtain Medicaid benefits and other aid.

The legal and ethical implications of this story are many, and although this sounds like a trite, PollyAnnic riff, I cannot help but think Who cares where this woman is from, and to what government she has or has not paid taxes?  She is a human being with cervical cancer that has chewed its way through her body.  She is a young adult cancer patient and dying.  Shouldn’t health care be a basic human right?

I also thought What if I were the woman in prison whose identity was stolen?  Identity theft is usually a thorn, but in this instance, I suspect I’d be glad I was helping someone out.

In the cancer community, there is so much talk about fighting to stay alive, and fighting for survival, but what if the fight involves illegal actions?  Cancer patients pride ourselves on never giving up.  What would you do if you were in Mariana’s shoes?

Two nights ago, I had a nightmare:  My husband’s company decided to switch from a PPO to an HMO and I could no longer see my doctor at Memorial Sloan Kettering.  I hopped on an elevator that went up to a swank, uppity City Club.  I schmoozed with a group of young, Abercrombie-looking, frat-boyish, health insurance VP’s.  Then I offered one of them a blow job in exchange for getting my PPO insurance back.  I knew that the blow job would kill my husband, but I also knew that me dying of cancer would kill him too.  The frat boy looked at me and laughed.

My dream raises the question of What would you do for health insurance?  Cheat, lie, steal?  Over the next few weeks I want to investigate the questions and perspectives on what we have to do to cover the cost of our care.  I have plenty of my own tenacious examples – none involving oral sex.  I’ve also gathered health insurance stories from other patients in my book, and from the news.  But first, I’d love to hear from you.

To what extent have you gone to receive COBRA, insurance, or pay down medical debt?  Have you thought about marrying for health insurance?  Suffered through a job you hated?  Spent down or stashed away your savings to qualify for Medicaid?  Spent enough time on the phone with agencies to call it a second full-time job?  Let me know!

Hi All,

I wanted to let you know that on Wednesday 3/18 at Noon EST, I’ll be on Doctor Radio along with The Crazy Boyz of i2y, chatting it up about my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, and about thyroid cancer - the disease that started it all for me. It is a call in show; if you want, pick up the horn and join in on the conversation!

You can tune in on Sirius 114 and XM 119. If you are not a member of Sirius Radio you can LISTEN FREE ONLINE by signing up for a free three day trial. The show will be replayed on Wednesday 10 PM, and Sunday 2pm EST.

If you cannot listen to the show, be sure to read my blog tomorrow when I’ll be writing about my outrageous health insurance sex dream!

Over and out,

Kairol