Everything Changes - The Guide to Young Adult Cancer

Easy On Your Chemo Brain
‘Young adult.’ When I say those words, people automatically think middle school literature: Forever and Sweet Valley High. (By the way, did you know Francine Pascal only conceived the series but many of the volumes were actually written by a guy? As an undergrad in New York, I babysat his toddlers.)

To avoid confusion with this literary genre, instead of saying ‘young adult cancer’, I now try to say ‘20 and 30-something cancer.’ But, even though my language has changed, my mind is still stuck in middle school bookshelf. Lately, I’ve been stressed out and thought that the perfect cure might be a young adult literary throwback to high school characters shedding their naïveté and entering the real world of pain and love. Plus, if you are having chemo brain days young adult books are easy on the mind.

Corny, Profound, Heavenly
This summer I attended a dinner party with Jonathan Greene, author of Looking For Alaska, and decided this past week to read his book. Make way J.D. Salinger and Siddhartha; Looking for Alaska is rife with deep insights about friendship, life, death, knowledge, and love that seem both corny and profound all at once – much like high school itself. The story is set in a boarding school in rural Alabama and follows the life of Miles, a certifiable geek who falls in love with a charming, wackjob, hottie named Alaska. The plot is griping, the writing gorgeous, and I’m not going to say much more because you need to read this book and be as glued to every page turn as I was.

Do you use the term ‘young adult cancer’ and if so, do people know what you are talking about? What was your favorite middle school book?

Christmas Cranking
While you all are out there eating your pineapple roasted ham, slicing your turkey, and lighting the tree (or lighting your menorah and indulging in Chinese food and a movie) I’ve sat at my desk and gotten five uninterrupted hours of writing done. No phone calls, no emails, no voicemails. That is what I call a Christmas miracle.

Christmas Lounging
On another Christmas note: a reminder to be good to yourselves. I’ve gotten too many emails in the past few days from young adult cancer patients who are in treatment, tired, nauseated, and fatigued and are worried about how they are going to make it through the long day, and long weekend of festivities and family visits.

Give yourself a break. You have a great reason to stay upstairs in your room, leave the party early, or not go at all. And if your friends and family don’t get it, do they really need to? Taking care of yourself is number one no matter what day of the year it is.

Hope you are all having a peaceful (or productive) day!

Real Estate
I don’t have a barn in my backyard, a house in Maine with a pre-hiking room, or a Connecticut home with a peony garden. The only space I technically own is my dog hair laden station wagon. But this doesn’t hinder me from slipping into my Ina Garten and Martha Stewart alter egos.

When a friend, colleague, ex-boyfriend, acquaintance, or stranger drives you to the doctors, waits with you during scans, and walks you to the bathroom, these are gestures of humanity. These favors are not the kind you repay. Accepting help in exchange for nothing is part of the humbling cancer experience (okay the first time I typed that, I accidentally wrote “it is part of the humiliating cancer experience.”)

Still, when I was done with treatment, I wanted to say thank you for these unthankable gestures. In my tiny studio apartment I pushed together a desk, dresser, kitchen table, and drafting table I found in the alley and cooked a sixteen-person sit down dinner. It was an outrageous banquet. People often commented that my cancer “brought such a nice group of people together.” Screw that. I wanted my inner kitchen diva, not my disease, to bring people together.

Darwin
My treatments stopped long ago, and not because I am cured. My body no longer responds to treatment (did it ever?). I am living with tumors in me, hoping they do not grow, and expecting that if they do, it will be at a snail’s pace. Some people look up to stellar survivors, like Lance Armstrong, for inspiration. Not me. I don’t need inspiration to survive. For me survival is instinct, logic, and persistence; a mechanism of evolution. What I need more than inspiration is distraction and delusion. I need on a shoe string budget to make decadent desserts and hors devours. I need on a regular basis to crack out my grandmother’s china and feed people. I need to pretend I am living in an episode of the Barefoot Contessa or standing in a page of Martha Stewart’s Baking Handbook.

Over the weekend twenty people crammed into our apartment, cooked, and ate together. Latkes, stilton, clementines, prosciutto, pistachio icebox cookies, tarte tatin, and homemade hot chocolate and whipped cream with kaluah. People ask me what my next book is going to be about. I answer: “caregiving”, or “a laymen’s guide to the fascinating and dirty underworld of healthcare policy.” But another part of me wants to sit down at my computer like Ina, with a big steamy cup of tea and crank out a dinner party diva book. Young adult cancer isn’t all about inspiration. In my world, distraction is necessity.

Sexy
Church sex scandals, a mom-and-pop candy cane business, and a twenty-nine year old murder story. At best these tales make for good check out counter reading, however, these are headline stories that graced the front pages of three major media and broadcast outlets today.

Today is no different from any other day. The Kaiser Family Foundation and the Pew Research Center’s Project for Excellence in Journalism conducted a study that showed only 1% of all stories covered by media outlets are about health care policy.

Wonky
Health care policies determine whether an insurance company can reject me, dictate how soon after my surgery a hospital can kick my ass out on the street, and decide how and when the FDA can approve a drug that may cure my cancer and eradicate the two malignant tumors that were nesting on my jugular at my last check up.

Forget that I’m a young adult cancer patient; just show me any American whose wallet has not been hit by the result of health care policy. We deserve real news about health care policy, and the Kaiser foundation thinks so too.

The Kaiser foundation has started a non-profit health policy news wire. Their journalists will research, investigate, and write news articles about health care policy. While reporters at the Boston Globe are working the Christmas Candy beat, stories about health care policy will pour in over the wire and onto our newspapers, RSS readers, TVs and radios.

Cheery
Remember, you have no right to gripe about your healthcare unless you educate yourself and participate in changing the system. Yes, that is sort of an obnoxiously Marsha Brady kind of statement to make. But it is true.

On The Wire
This week Reuters news service wrote a release about a study presented at the San Antonio Breast Cancer Symposium. The study analyzed 16 different topical moisturizers whose ingredient list did not include estrogen, yet when tested many actually did contain the hormone.

This article ran in Scientific America, on Oncolink, Fox News and other major media outlets. It quotes Dr. Adrienne Olson of Breastlink, who conducted the study and strongly urges estrogen-receptor positive breast cancer patients, those on aromatase inhibitors, and anyone wanting to reduce risk of breast cancer to avoid externally administered estrogen. In my own research I discovered information from Cornell University that states: while estrogen is key for reproductive development, over exposure to estrogen throughout a lifetime can also pose some serious breast cancer risks because estrogen affects breast cell division and supports the growth of estrogen-responsive tumors.

Totally Corny
I don’t have breast cancer, but because of my primary young adult cancer diagnosis, I am at an increased risk for secondary cancers, and my breast cancer risk factor is higher than the norm because I have not been pregnant by 30. I’m now tempted when stepping out of the shower to forgo moisturizer and instead tip a small pool of corn oil into my palm and slather up my calves. Plants and veggies contain estrogens too, but corn is on the list of low-estrogen plants.

Homework Geek
That’s where this post was going to end, but my inner research geek got the best of me. I looked up the conference but could not find any papers, posters, or presentations on estrogen and moisturizers. I googled Adrienne’s name and all that came up was this Reuters story. Adrienne had no research papers to her name in the Pubmed database. I looked up Breastlink, which is in Southern California and reeks of being a boutique breast cancer care center. (Hello, they trademarked the words OptimalCare and the director’s bio talks more about his high school track career than his research track record.)

Are you convinced that you should stop using moisturizer? Can you beat me in the research chase and find more information about it than I did? If factual sounding information is on a website or even written by a news service, is that enough proof for you?

The Dilemma
I have not blogged in the last few days because I was with a family member in the ER and then the hospital. Here’s a tid bit of stellar advocacy I pulled out of my ass during a moment of high exhaustion and rage.

At 3pm we had been waiting for hour seven in the ER for transfer to a room. The room was ready for us; we just needed the primary care’s administrative blessing in order to get it. His staff had already paged him six times with no success. This was inexcusable. Knowing their phones would be shut down in an hour, I called the doc’s office again, and spoke in my uber-polite:

The Crafty Solution
“Lori, I know this is not your fault, but here’s the deal. This is unacceptable and negligent care. You have exactly 15 for the doctor to call the ER and if he doesn’t, fucking heads are going to roll. My husband is a lawyer and I am friends with the CEO of Northwestern Memorial Hospital. Call me back in five minutes after you have explained this to your supervisor. You then you have ten minutes to get the doctor to call, complete the paperwork, and make an admittance happen. Again, I know this is not your fault and I appreciate you helping us avoid the extremely ugly scene that will ensue if my request is not met.” Within five minutes the doctor called the ER, completed the paperwork, and we had a room. I was kicking myself for not making that call four hours earlier.

The Lie
My husband is a lawyer. But he is a non-profit environmental lawyer. And before I even met him, I used to tell staff at medical records departments that I was a lawyer. I’m not, but it always helped me get what I wanted. And the CEO: I shook his hand once at a meet and greet when I was a hospice volunteer. I asked him why his hospital didn’t take more charity cases. He smiled and walked away without answering. I’m sure the man doesn’t remember me and if he does, he doesn’t like me.

The Lesson
Tell white lies sparingly, or else they become less believable. Use them in situations where the unethical behavior of the hospital or doctor far out weights the unethical stance of you being a liar. Maintain composure and a sense of dignity while telling them. When someone’s health is at stake, a small white lie and a little good acting can make a huge difference.

Have you ever lied in the hospital or a doctor’s office to get what you want?

I’m high. Killing brains cells. Just from sitting in my apartment after the maintenance guy came to fill, with toxic caulking, the leaky drafts in my 80 year old windows. I want to know just how many points these fumes transfer from my healthy-cancer-girl column into my tumor-burden-hell column.

I wish the effort to shrink my tumors was like being on Weight Watchers; I’m jonsing for a formulaic and sensible approach to killing my cancer. I want to pick and choose my points. I add up in my head the potential cancer causing actions I do through out a day and mull them over as though they may shave a few good points off the score card of my next check up.

But with a Weight Watchers-esque cancer plan, if I want to live in a cheap apartment in Pilsen that is a mile from a coal fire power plant that spews carcinogenic emissions, it wouldn’t much matter because I could just stop eating meat for a few years and it would all even out. And if I haven’t exercised or used toxic free house cleaners for weeks in a row, I could just skip sushi before my six month check-up and the scales would tip in my favor anyway.

Yes, it would suck to have people like Kirstie Alley and Valerie Bertinelli as my role models. But still, I would sign up in a minute if I could trade in the ambiguous, unproven, nail biting swirl of stabbing in the dark otherwise known as “being healthy.”

And P.S., after googling Kirstie and Valerie, I can see I have my diet plans confused swapping Jenny C. for Weight Watchers, which gives me occasion to pause and be thankful that Hollywood and weight loss gimmicks are not my area of expertise.

Do you ever do the math in your head of what could or could not be adding to your tumor load? Do you have any advice for how you find sanity amid the calculations?

Marble On My Number
I had cancer and no health insurance. I wasn’t a 27-year old slacker who didn’t want insurance. And although it was a stretch, I was even able to pay for it. Instead, Denise, my HR director, forgot to submit my COBRA papers when I left my job. What are the chances you get diagnosed with cancer the month your COBRA papers fall through the cracks? However small they were, the marble landed on my number.

1974
I fought tooth and nail, dubiously worked the system, and lied out my ass to reinstate my COBRA. I was lucky; the company I worked for was still in business. But what happens if you lose your job because your company shuts down? You are shit out of luck because the very definition of COBRA means you are paying to join the group plan run by your former employer.

The unemployment rate just hit its highest since 1974. For many, this means the loss of employer-based health insurance, either because folks cannot afford to get COBRA or because it is not available. Without insurance, many people will be diagnosed with cancer at later stages that bear lower survival rates.

Jelly In the Middle
Sunday’s New York Times tells the story of workers at the Archway Cookie plant in Ashland Ohio - you remember the chewy oatmeal cookies with apricot jelly in the middle? The plant closed down and many workers have no access to healthcare.

In the article, M. Harvey Brenner, a professor of public health at the University of North Texas and Johns Hopkins University, reports on a 30 year study that shows the link between the economy, human health, and life expectancy. The bottom line: When the national income drops and unemployment peaks you often see increases in mortality from cancer and other diseases.

Interconnectedness of All Things On the Planet
Lots of people get cancer and suddenly see that everything happens for a reason, they feel an interconnectedness to everything on the planet. I’ve got cancer, and I believe things happen for a reason, but that reason is usually related more to health care policy, economics, and politics than it is to God. Discovering the cure for cancer is not enough. We have to figure out how the woman who used to bake apricot cookies can afford to get diagnosed and pay for her drugs. As young adult cancer patients, we cannot just turn off the news and pretend the economy doesn’t affect our lives.

Has the shift in the economy affected you? Do you know anyone who has recently become unemployed? Do you listen to reports about the economy on the news or do you switch the channel?

Cancer-Free Trees Please
I like to get the skinny on how to raise healthy kids because let’s face it, many cancer patients have the brittle immune system of an infant or a toddler. What’s good for the bodies of the knee biters and rug rats is often good for young adult cancer patients too.

Far be it for me, a Jew, to tell you what to do with your Christmas tree. But let me at least throw some information your way.

Today I read on the Healthy Child Healthy World blog, a post about pesticides and Christmas trees. The Environmental Protection Agency has approved for use on Christmas Trees pesticides that are linked to cancer, hormonal disruption, and Non-Hodgkin’s lymphoma, as well as a host of other less than enticing bodily diseases and malfunctions.

My goal here is not to sound the sirens of enviro-paranoia. Has a Christmas tree ever killed someone? I bet not. (Well maybe electrocution, but I doubt cancer.) My hunch is that most often it is not one singular toxic event that causes environmentally triggered cancer, but rather a collection of exposures from multiple sources over a period of time.

So what to do about the toxic tree dilemma:

1. Nothing. Sit back and enjoy the glow.
2. Keep your tree around for two weeks instead of until valentine’s Day.
3. Wash you hands after touching your tree and before touching food.
4. Check out Beyond Pesticides to learn more about purchasing an organic Christmas tree or wreath.

How do you usually decorate your home for the holidays? Do you have any other suggestions for those who want to forgo a toxic tree?

Confession
Don’t hate me, but I have never had one ounce of interest in passing through my crotch an object the size of a cantaloupe. Nor do I want to give up the life of writing till 5 AM and sleeping until 11 AM (okay, truth be told, I really sleep till 1 PM if I can). I have never wanted to have kids, but if I did, I would adopt. It kills me to think of all the kids living in my own damn city without parents. So, if my cancer destroyed my ability to have children I would only think of it as a contraceptive blessing. Other young adult cancer patients’ worse nightmare – being infertile – would be to me, a gift.

Frankenstein Fertility
I don’t actually know if I can get pregnant, because I never have been and have never tried. Thyroid cancer does not have a particularly high risk of infertility, but many other cancers do. When writing my book I met many men and women for whom fertility was a big concern, and for some the largest emotional challenge of the entire cancer experience. Assuming that I am fertile, I wish I could just make some kind of Frankensteinian contraption and flip a switch that would transmit my fertility into their body and their infertility into mine. Since that is not a practical solution, here is something else that is:

The Calculator
Fertile Hope, a non-profit founded by Lindsay Nohr Beck, has long had a fertility risk calculator on their website. But, just this month they launched a fertility options calculator too. Click a few check boxes about your health status and treatments, and it will guide you through your options, and even connect you to doctors and adoption agencies in your area. As a young adult cancer patient, you often have to advocate hard for information and care regarding fertility. Most doctors do not bring it up with patients, nor have much information to provide. If having babies matters to you, do your homework at fertilehope.org

Have you brought up fertility issues with your doctor or did they raise them with you? Were they very educated on the subject or did you have to seek the information yourself?