Everything Changes - The Guide to Young Adult Cancer

My tiny little ass is getting fatter. And I wrote a comment about it today on a New York Times Well Blog post about cellulite:

“I have been stick thin for years from cancer treatments and only in the past few months have I seen cellulite on my body for the first time ever. It is kind of unattractive, but a vast improvement to looking like a victim from the camps. It might take some time to get used to, but I’m welcoming my cellulite.”

I don’t talk about my body much because in the world of women it is easy to be hated for being skinny - even scary skinny like me. I’ve always been svelte. My body was great for ballet, but freakish by other standards. ‘Toothpick legs’ was the name kids called me at summer camp. Not a confidence booster.

Before cancer I was a healthy 134 pounds. Since my hormone therapy I’m now 112 despite my efforts to gain weight. I feel like my bones are going to impale my partner, like I might be easily carried away in a storm. I catch people looking at me with tempered disgust. So yes, the ripples of fat that just showed up on my ass in the last few months are not attractive but are okay with me.

Some of you may be rolling your eyes by now thinking “whatever you skinny bitch.” I know that being underweight is a hell of a lot easier than being overweight in this culture. But my body is my body and I want to write about it.

It is weird to work so hard to keep this body alive and then to focus on something as seemingly shallow as looks. But how we look can often impact how we feel about ourselves, and that is something worth writing about.

Has your body changed shape or size from surgery, treatments, hormones, steroids, lack of activity? How have you adjusted to this change? Do you feel like other people notice or comment on your size? How often do you think about your appearance?

One of the greatest parts of writing my book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, was having complete strangers talk to me about the intimate details of their sex life. Here’s Mary Ann, from Chapter 9 ‘It Girl’:

“From my head to toes, I have been affected by cancer. Every part of my body has changed. I don’t feel sexy or female. I feel mutilated. I feel different, like an it. Feeling attractive goes into and is combined with feeling sexy, which might put you in the mood. Usually, I don’t feel like I’m in that mood. When you have been married for nine months, people think you are making love every night. I feel like we should be engaged in it all the time, and we are not.”

As young adult cancer survivors, we’re on hormonal roller coasters, missing body parts, wrestling with anxiety, reacting to medications, treatments, and transplants, and managing our ever fluctuating self image. These are not the easiest ingredients for a smooth sex life and it’s time we started talking about it and figuring out how to make sex work better for us.

Tonight, Monday, June 8th, 9 PM, EST is the ‘Sex, Sex, and More Sex’ episode of the Stupid Cancer Show. We’ll have two sexperts - Sage Bolte and Sueann Marks, on air focusing for an entire hour on cancer and sex. We’ll also be giving away to listeners three free copies of The Guide To Getting It On.

If you have any questions you want asked on air about sex and cancer, it is not too late to leave them in the comment section of this blog post (remember, they can be anonymous). And thanks to you who have already sent me your juicy questions!

What have you always wanted to ask about sex and cancer? Have you ever talked to a sex therapist before?  Have you ever brought up sexual issues with your docs?  How did they respond?  Were they educated, informed, embarrassed?

Many survivors my book marked the end of treatment with a trip. Some expensive, most on a shoe-string. Some foreign, others just a refreshing get away to see family or friends. If your thinking of adventure travel, Defy Adventures, a new adventure travel organization for young adult cancer patients. I recently interviewed Micheal Lepage, the founder.

Did you travel prior to having cancer?
No. Beating cancer spurred me to see the world. I have since backpacked Europe, trekked dormant volcanoes in New Zealand, camped in the Grand Canyon, and climbed to the top of the Cristo in Rio, where I asked my wife to marry me.

What were you hardest and most hopeful memories of treatment?
I’d just finished my 12 chemo treatments. Excited to return to school, finish my last semester and graduate, I dragged my parents, siblings, and girlfriend to my appointment. The news was the exact opposite of what I expected; I hadn’t responded well and I needed another four treatments. I felt crushed, embarrassed, and annihilated.  My most hopeful memory was a moment of clarity while sitting quietly in nature. I had one more treatment to go and felt sure that my cancer was gone and it was over. My next scan was blank and I was right.

What advice do you have for survivors after treatment?
Take it ridiculously slow. Here’s my formula; Take the total months of cancer treatments, divide it in half, and add 3 months. Plan for that much time to get back on your feet. If you get there sooner, great! But don’t push for it.

Talk about your new organization Defy Adventures.
We help young adult survivors reclaim their lives after cancer. We whisk them off to a remote part of the world to climb a serious mountain in Peru or survive in the jungle. Our expeditions create community, build self-confidence, inspire, and are a total blast.

So, have you taken any memorable trips after your cancer care? Were did you go? Did you get the O.K. from your doc before you traveled? Any tips for survivors wanting an inexpensive vacation? After treatment my friend Lisa Friedman and I went on a shoe-string trip to Costa Rica where we stayed in little beach villages with almost no tourists.

Mark your calendars. Monday, June 8th, 9 PM, EST for the ‘Sex, Sex, and More Sex’ episode of the Stupid Cancer Show. We will have three experts on air focusing for an entire hour on cancer and sex!

I got a great email today from a blog reader who was writing me about some issues down there – mostly feeling like she is popping her cherry every time she has sex with her spouse. These down and dirty sex issues are real problems and we have few forums in which to talk about them and receive expert advice.

So, over the next few weeks, I’m going to request that you leave in the comment section of my blog questions you would like to have read on air. Remember that there is an anonymous option in my comment section, so nobody will ever know who you are and you have carte blache to ask whatever questions you like.

Be as graphic, real, and hardcore as you need to be. Sage Bolte is one of the experts. I interviewed her in my book Everything Changes and believe me – NOTHING is too graphic to discuss with this woman.

We all look forward to reading and hearing your questions!

I talk and write an awful lot about the loneliness of being single during cancer.  Yep, I’m married now, but I went through four years of cancer singledom before I met Shannon.

Being married means more than having someone to hold you after a horrible day at chemo.  Check out all of the perks afforded to married couples: Spouses get visitation rights, smoother application of  power of attorney, and can get our meds from the pharmacy no questions asked.  Spouses get to share insurance benefits and might even get special tax breaks.  Spouses have the built in support of sharing possessions, expenses, and are often built in caregivers.

I’m damn lucky to get these pluses and feel it is totally jive that single people and unmarried same sex partners don’t.  Here are some resources that, while they are a tiny drop in the bucket, are good ones to check out:

Hospital Visitation Authorization Document from the Human Rights Campaign - Instructs your doctor, care providers and hospital staff about who is allowed and given priority to visit you if you are hospitalized.  This is a great document, but as we have seen in recent news about a lesbian woman who had power of attorney and was still unable to visit her dying partner, these documents don’t always work in every real life situation.

Breast Cancer Recovery Infinite Boundaries Retreat – Special retreat for women who are or have gone through the experience of breast cancer without the support of a spouse, partner or significant other.  They have already held their session for this year, but I’d get on the mailing list so you can find out ASAP about next year’s - it fills up fast!

Are you/ were you single or unmarried during any part of cancer?  What were your biggest challenges?  How did you work around them?  I only mentioned the negatives.  Are there any benefits to being single or unmarried with cancer?

Shannon and I are ditching our car for two months and seeing what life is like.  (Evil Chicago potholes caused $1,800 of damage to our car, and we don’t want to shell out the cash to fix it.)

In a way I’m glad - it is forcing me to actually do something that I often complain about: get serious about cancer and the environment.  Did you know that four major chemicals released by car engines are proven to cause cancer in animals and humans?

I’m not going to change the world or reduce young adult cancer incidence rates. In fact, I think it is dangerous to think that individual actions, like using CFL light bulbs or buying eco-crap, are going to solve the decline of our environment.  Nope, for that we need tougher regulations on car emissions, investment in public transit, and more walkable communities.

But until then, I am glad to be trying out a life that is just a tad bit less hipocritical…. how can I bitch about cancer and the environment while I’m driving my car everywhere?

Having no car has been an adjustment and sometimes frustrating.  But there are some big time benefits too: I get more exercise, meet more neighbors walking, and read more and see cute kids on the bus.  Plus we joined a non-profit car share so we have wheels for big errands.  This would not have worked if I still had treatment fatigue, and I might not like it come winter.  We’ll see…

How often do you drive? Do you ever equate daily activities of your life with carcinogenic output?  If you have had major illness, treatment, surgery, did it affect your driving habits? Have you ever used the American Cancer Society’s Road to Recovery program?

I have a horrible history of arguing with PETA (People for the Ethical Treatment of Animals) advocates, like the big Foie Gras debate in Central Park where the PETA volunteer almost clobbered me with her clipboard.

I now have another beef to pick with PETA. (Would you ever know that when I was diagnosed with cancer I had already been vegetarian for 14 years, vegan for seven? I do love cows and geese, it’s just these wactivists are absurd!)

According to the blog Disruptive Women in Healthcare, PETA is sending letters to the CEOs of major hospitals urging them to reduce their carbon footprint by eliminating meat as an option to patients, visitors and employees. I like the response of Glenna Crooks, the blogger who posted the story. She argued that transitions to meat free diets take time for our bodies and schedules to adjust to, and there is a learning curve for educating oneself about proper vegetarian nutrition.

I agree with Glenna. During and after a hospital stay is not the right time to throw another wrench into a patient’s already complex and life altering care plan. Hell, if some of us in cancer treatment or after surgery can manage to swallow a bite of boiled chicken or sip beef bullion, it is cause for a celebration not a PETA demonstration.

Hospitals should try to reduce their carbon footprint, but they should look to The University of Pittsburgh Medical Center as an example of how to do so through adopting energy efficiency standards.

Are you, were you, or would you ever be vegetarian or vegan? Do you think it is a good idea for hospitals to impose that dietary choice upon patients? What food worked best for you during cancer or other illnesses and could you have gotten by without a bowl of chicken soup?

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?

Silkwood
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?

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?

Shopping List
Are you seeing double from treatment, immobile from surgery, or too fatigued to drive to the store for groceries but tired of asking your friends for favors? Learn how to make your food last longer so that you can make fewer trips to the grocery store. M. O’Connor, a commenter on a New York Times foodie blog offers the following tips, which I have adapted slightly.

1. Buy meat in quantity and pop into the freezer upon unpacking

2. Lettuce: Buy heads not bags, store with bottom end in a bit of water

3. Keep bags of frozen vegetables on hand (healthier than canned)

4. Rice, most dried beans, and pastas keep for ages on the shelf

5. Dried fruits have long shelf-lives, as do most nuts

6. Potatoes, onions, and apples last a while, store in a cool, dry place

7. Wrap hard cheeses in waxed paper followed by aluminum foil

8. Eggs last far longer than the date on the box,purchase many cartons
are a time. Read more about it.

9. Use canned or powdered milk for baking; eat oatmeal for breakfast

10. Keep butter and bread in the freezer, defrosting as needed

Pitfalls
This list contains some pitfalls for young adult cancer patients: you have to be able to afford to buy in quantity, have a large enough freezer, and if you are trying to eat organic or preservative free, your food will perish much faster than conventional food.

Have you needed others to do your groceries while you were sick? What made it go smoothly or not? What is the nastiest thing someone bought you when they did your shopping? (Mine was cozy shack pudding, which I ended up liking!) Have you ever gone without food because you couldn’t make it to the store?