Everything Changes - The Guide to Young Adult Cancer

Here’s a great question I got from a reader living with lupus:

Dear Kairol,
A number of people are giving me well meaning but downright useless and unsolicited advice about my illness and how I should handle it - diet suggestions, names of new doctors, and how to manage my illness in the workplace.    It upsets me to the point that I’m sometimes in tears afterwards.   They are trying to help but not with what I need the most: grocery shopping, cooking or sheltering me from their germs.  How do I handle this?
Anon Me Again.

Dear Anon Me Again,
When we’re sick people feel helpless and they grasp at advice to try and make us feel better. Here are some ways to respond:

Heart to heart. If it’s coming from a valued friend, have a heart to heart talk.  Use good therapy talk like “I” statements to describe how you feel, and remind them how much you value their friendship.  Tell them how hard your disease is physically and emotionally, how personal your healthcare choices are, and how their advice makes you feel.  They may not know their comments have made you cry and if they love you, they’ll care.   Talk about the specific kinds of help you really need and how much their help would mean to you.

Elevator lines. If it’s coming from an acquaintance in casual conversation, prepare a practiced response that you say in a positive tone of voice, and then redirect the conversation to another topic. Such as: “Oh, wait – I know what you are going to say, but I actually have a great diet that works well for me.  Thanks for the idea, but I’m really cool in that department.”  Or, “Wait, I know you have some good advice for me, but I am on information overload about my disease, and I need to take an official break from thinking it.  But thanks anyway.” The more you do this the easier it becomes, and it’s very empowering.

The drama reduction program. I write about the DRP in my book Everything Changes and how great it was to rid my life of dramatic people.  Who are the people dishing out this advice?  Are they pushy, dramatic, tiresome, or bothersome in general?  If so, limit your contact or give them the axe.  Sound harsh?  As a young adult cancer patient, I only have so much energy to go around. I’m picky about who I give it to.

What is the most irritating unsolicited advice you have been given?  How do you handle situations like these?  Are you ever guilty of doing the same to others?  (Hard as I try, I know I am from time to time.)

For more details about my utterly liberating Drama Reduction Program, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Patients for A Moment is a blog carnival by/for/about patients.  Every other week Duncan Cross, blogger extraordinare, solicits posts from patient bloggers.  He then features them all together in a singular post on his blog.  Now he is passing the torch.  Twice a month, a new blogger will host Patients for A Moment.  This is my week to host.  Catch the next one on August 12 on Adventures of a Funky Heart.  To learn more or read the Patient for a Moment archives, visit:

Patients for a Moment #4

In his post The Albatross, Duncan Cross writes profoundly about my favorite illness subject: s-e-x.

I used to take pride in being an overachiever, now I balk at it.  Read Baldylocks’s Exceeding Hyperdrive on The Adventures of Baldylocks: hula hoop video included.

Did you know more patients die each year from medical errors than from breast cancer?  Patient safety receives far too little attention, so I was excited that Florence dot Com wrote about it in her post I’m So Very Sorry.

On Brass and Ivory, Lisa Emrich asks an in-your-face, utterly informed, and armed with statistics kinda question about prescription drug coverage to a panel of doctors at the National Press Club, in Not Your Typical Patient. Lisa is my hero.

Novel Patient takes a flipcam to record her second infusion in Rituxan Take Two, where we watch a mundane hospital routine become personal.

Aviva from Sick Momma has been asked 100 times by her 4-year-old daughter “Mommy, when are you going to die?”  Here’s her answer in From The Mouths of Babes.

Leslie, from Getting Closer to Myself, fuses sociological perspectives on health and illness with her most recent flare of lupus, in What Does It Mean To Live In  A ‘Remission Society’?

Laurie Edwards at A Chronic Dose writes about blogging in the illness community and how it has made her a less judgemental person in On Listening and Judging.

Kate at After Cancer, Now What writes about Scars As Fashion Statements.

Cathy Bueti writes about olfactory senses and PTSD in What’s That Smell?? on her blog In My Life.

If you’re ever terrified of getting an endoscopy, Kim from Emergiblog will put your mind at ease with her post I Went, They Scoped, Now Starbucks is History.

I’d love to know which posts you’ve read and what struck you the most.  Leave a comment below.

The Everything Changes blog is a companion to my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Both book and blog are resources for anyone living with chronic illness.  All are welcome!

I’m under the weather today.  Trying to get comfy in bed with a fever on a hot summer day.  Trying to peel myself away from my computer and my workaholic tendencies.  Trying to take catnaps while reading Unaccustomed Earth – Jhumpa Lahiri’s most recent collection of short stories.  Wondering on days like today why I don’t have a TV.  I’d love some Law and Order right about now.

I can hear kids playing in a fountain in the park next to my apartment building.  As a kid, I grew up next to a private elementary school.  When I was home sick, I remember hearing the school kids playing during recess.  I always thought “Ha, I have the day off of school and youuuu doooon’t!”  Maybe I will try to adopt that attitude today.  I’ll think of all my friends slaving away at work while I get to chill in bed reading fiction instead.

If I spent the afternoon working, I’d complete an interview and put some hours into promoting my upcoming book reading.  So instead, I’m going to crank out a little blog post about it and call it a day.

Am I the only one?  Do you guys ever have a hard time prying yourself away from work when you don’t feel well?  Are you addicted to feeling productive?  I’m damn lucky that I am self-employed and can manage my own schedule.  Have you had to work during your illness because you didn’t have sick days or disability leave?

Find out more about Mary Ann and other young adults who decided to collect disability during and after treatment - Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I’ve been busy traveling the East Coast with book readings and parties, but have not had a public reading in my own town yet.  It’s about time I rectify that.

i[2]y Chicago presents a stupid cancer book signing of

EVERYTHING CHANGES:

The Insider’s Guide to Cancer in Your 20s and 30s

Wednesday, August 12 - 7:30 pm

Women and Children First Bookstore

5233 N. Clark Street, Andersonville

For more info call - 773-769-9299

Complimentary sangria from Winediva

and gourmet hors d’oeuvres

I’ll be reading and signing.  Jonny Imerman, Winediva, the crew from Gilda’s Club and Planet Cancer, and other 20 and 30-somethings will be there.  Hope you can make it too!

Go green, vegan, raw, buy organic, juice up, chow on berries, ditch sugar. There are anti-cancer diet books, blogs, and products galore that tempt me where it most hurts – the idea that what I eat will make my cancer go away.

It’s anxiety provoking, wanting nothing more than to be cancer free and having to walk through the daily media circus of onco-food washing. There’s so much “information” with so little evidence behind it. It’s overwhelming to know what’s actually good for my body. There are times when I’ve wanted to cry raising a fork to my mouth and wondering if the food on it was killing me.

Some of the logic seems straightforward: put carcinogenic chicken in my body and increase my cancer burden. But for me, it isn’t that simple. Leading up to my diagnosis I was vegetarian for 14 years, vegan for 7 of them, did brown rice fasts, and thrived on organic greens and bulk whole grains. On this clean and green lifestyle, 19 tumors grew in my neck. It’s hard to know where to turn after that.

Enter Shannon, my voice of reason. It killed him to see me so freaked out over trying to be healthy. So we came up with a plan for what I should eat: 1. No dairy – it just makes me feel like crap – except I still eat organic butter, blue cheese, and bread pudding. (Why suck the joy out of life?) 2. Only organic and pasture fed meat and eggs. This means I eat a lot less meat because it’s expensive, hard to find, and almost never available in restaurants. It tastes a hell of a lot better though.  3. No packaged crap. This is nothing new for me. 4. Quality baked goods when I feel like it, which is only every so often. I’m talking peach cobblers with buttery crusts NOT brown rice syrup cookies.

Food is a pleasure for me again. I have no guesswork, no beating myself up at mealtime. And because I made these healthy rules myself, it is easy for me to comply with them, and to change them over time if they need tweaking.

Wheatgrass fasts might be fine for others, but for me, I’m anti anti-cancer diets. Instead I like the idea of crafting food guidelines tailored specifically to my life and my values. When creating a “diet” that worked for me here’s what I considered. Hope these are helpful for you too:

* How much time do I have for special meal preparation?
* How much money do I have in my budget to spend on food?
* What is the availability of quality produce and meats in my area?
* What makes my body feel good?
* Am I getting enough calories, protein, and nutrients?
* Do I trust the sources that are telling me what I should or should not eat?

Do you ever stress out about food contributing to your cancer burden? How do you tame that anxiety? Have you ever tried a cancer diet? Was it sustainable? What is your ideal healthy diet?

For more tips on balanced, healthy approaches to cancer and body mind healing, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I know I’m smart.  And, that I.Q. tests don’t prove a damn thing.  Still I took a cheesy online I.Q. test three years ago just to prove to myself that I’ve got brains.  There’s lots of talk about how cancer affects our body image, but what about how it impacts our mental and intellectual self-esteem?

Since cancer, my brain has become a sieve.  I feel inadequate at dinner parties when I can’t spit out cool facts from NPR.  I feel silly defending my positions in conversational arguments; I get one point out and the rest disappear. Forget about retaining facts I read in the newspaper, recalling plot lines of books, or being able to follow driving directions or recipes without rereading them 100 times.

I’ve mostly learned to cope with my fear of sounding stupid in front of friends, colleagues, or strangers.  It’s a matter of overcoming my vanity and not caring what other people think. (Do they even notice my mental short- comings or is the flashing neon arrow pointing at my brain just my own baggage?)

What’s harder are the limitations and frustrations my memory presents to me personally. I’ve thought about going to grad school or working on a PhD but my current brain function truly isn’t capable of the work.  Instead, I’ve satiated my intellectual curiosities in more manageable ways, like writing my book Everything Changes.  Organizing and retaining research information for my book was challenging, but it was an independent project that I navigated on my own terms.

I don’t put much stock in beauty, charm, or humor.  Compassion and intelligence have always been what I prize.  So it’s been a struggle making peace with my scattered cancer brain.  There’s some real sadness there for me.  But while my mind feels deficient, I’ve learned how to move beyond feeling like crap about it and started making the most of what I’ve got.  I’m still a stellar creative thinker and believe I’ve still got it going on in the critical thought department.

Next week I’ll write more about my tricks and tips for dealing with brain fog and forgetfulness.  But for now, I’d like to know your experiences.  Have you faced intellectual self-esteem issues as a result of illness?  How do you handle the emotions that go along with it?  We joke a lot about chemo brain in the young adult cancer community, but have you found a place to talk about how challenging cognitive deficits really are?

Enjoy the fruits of my mental labor!  Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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.

Oh yes, I’ve had appointments where I had to restrain myself from smacking the doc.  Where I’ve had to act sweet and pretty just to get a moment of air time to ask questions about radiation treatment.  Where tears have sprung the moment they stepped out the door because I couldn’t dare be myself in the doc’s presence.  This is why I was floored when I asked him and he said ‘yes’.

I’m talking about my doctor R. Michael Tuttle, MD at Memorial Sloan-Kettering - he’s one of the top thyroid cancer docs in the country.  We’re appearing together this Sunday on a two-hour radio special all about thyroid cancer and young adults. Perfect match right?  I’m a thyroid cancer queen (nine years and counting baby!) and he’s a thyroid guru.   So why was I  floored when he said yes to doing the show?

I’ve had a slew of docs in my cancer career. Most have been top of their game. Their skills were unparalleled, they were leaders in research, and trend setters in their field.  But most wouldn’t answer my questions in their office, let alone answer radio callers on a Sunday afternoon. They were all about science but seemed to care less about my patient experience.

I was actually cool with this. I’m a super empowered person and compensated from elsewhere for what my docs wouldn’t give me.  I hire docs for their skills not their personalities.

But with Dr. Tuttle, I now see that a good doc-patient relationship goes beyond my 15 minutes of face time. I have greater peace of mind and less anxiety about my cancer in general because I get from Tuttle the information I need. I also know that when patients have better communication with our doctors we are able to better follow their instructions for taking medications and adhering to treatment plans.

If I have to go doc shopping in the future, I will still choose skills over personality and communication style. But for now, I’m damn glad that I get to have it all.

What are the qualities you look for in a doc?  Did one ever make you cry?  Would yours do a radio show with you?  Do you have any questions about thyroid cancer and young adults you would like us to answer on Sunday’s show - medical, emotional, or social life stuff?  If you miss the show you can listen to the podcast.

To learn more about how young adult cancer patients have handled their docs’ personalities, read 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.

I think there’s an expectation that having cancer is going to make my work, relationships, or goals in life more meaningful or important.  But why?

Shannon is going to be a guest on tonight’s Stupid Cancer Show about cancer and the environment.   (He’s an environmental lawyer for the Natural Resources Defense Council).   Preping for our interview, I asked – in my best Terry Gross voice – “Did meeting your wife, a cancer patient, reinforce your commitment to your work on the environment and healthcare outcomes?” His answer: “No.  Not really.  I cared about this work to begin with.”  Reason #210 why I love this man.

I guess the assumption is that we’re all just a bit too lazy, unkind, uncommitted, shallow, or careless in our lives and need cancer as a wake up call.  But, I think I had a pretty meaningful life before my diagnosis, just as Shannon had a pretty great commitment to public health issues before meeting me.  I’m mostly happy for people who’ve gotten more meaning in their lives from cancer.  But I’m also a bit sad for what their lives must have looked like prior to cancer if they needed this disease as a makeover.

The burden is on cancer patients to live profoundly meaningful lives because we’ve seen the light.  Be shouldn’t we all strive to lead meaningful lives, be good to our neighbors, smell the roses and help old women across the street whether we’ve had cancer or not?  Just turn on the news, walk down the street, empathize with anyone who has lost something or someone.   Wake up calls are everywhere.

It was a relief for me to hear Shannon say that my cancer was not a wake up call for him.  Call me crazy, but I’d like to think that the greatest assets I have to give him are not two malignant tumors in my neck.

Was cancer a wake up call for you?  If so, in what ways?  If not, why not?  Do you ever feel like there is an expectation that you should have become a more whole or better person because of your cancer?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Greg and other  young adult cancer patient who said they’d choose to get cancer again because of the positive change it made in their lives.