Everything Changes - The Guide to Young Adult Cancer

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.

“What’s the right way to thank friends for their help and to show my appreciation?,” asked Garnet, a survivor, in the comment section of my last post (Cancer and Friendship). Her question evoked the words of Richard Acker, a 36-year old stage 4 colon cancer patient in my book.

“When we receive help, it is clearly benefiting us, but it also gives some benefit to those who are helping us. They feel good, it makes them happy, it helps them to express their love for us in a concrete way.”

I agree and believe that when you receive help while you are ill, you don’t have to do anything other than say, “Thank you.”  I haven’t always followed this rule though.  Especially after treatment, when I made big thank you gestures - mostly in the form of dinner parties where I unleash my inner Barefoot Contessa.  My desire to thank came not only from my genuine gratitude, but also a bit from the guilt of feeling like I was an imposition, and a tad bit from shame that I needed help to being with.   Thank you gestures made the help I received into something reciprocal, which made me feel less like a sick cancer patient.

But I’ve come to think of that attitude and the need to do something thankful as bullshit.  Why?  Because I AM a young adult cancer patient and I WAS sick. This is not an equal, reciprocal exchange.  When we are down and out we need help.  When I graciously accept assistance without reciprocating, I am humbled and reminded of how helpless I am sometimes.  This is not a bad thing.  In my eyes, this is part of getting real with what it means to live with cancer.

When I do something for someone else in need I don’t do it because it makes me feel good or because I want something in return.  I do it because I love someone or care about helping to alleviate suffering in the world (that sounds kind highfalutin but it is true.)  When someone helps me, I hope this is also their motive.  Now, when I’m sick and need help, I simply show my gratitude by saying “Thank you,” it feels really right.

What is it like for you to accept help?  Do you ever feel guilty doing it?  Do you feel like you have to give back and do something?  Does it make you feel weak to accept help or does it empower you to recognize your limitations?  Have you ever done something for friends and family to thank them for helping you during an illness?

As young adult cancer survivors we big time need to kvetch about our friends who say stupid things to us (like: “In a way you are lucky you have cancer because now you don’t have to worry about whether you will getting it.”) But do we also spend enough time praising and gushing about our friends who totally understand us?

On Monday, Tara Parker-Pope referred to an article from the Journal of Clinical Oncology March 2006, which studied 3,000 nurses with breast cancer and showed: “Women without close relatives, friends, or living children had elevated risks of breast cancer mortality compared with those with the most social ties…. Neither participation in religious or community activities nor having a confidant was related to outcomes.”

When I was diagnosed, I sat on my bed and told my friend Nicole.  She shed all pretense and sat and cried with me.  It was the best response to my cancer I ever had.

During my treatment, Rachel, a casual acquaintance, adamantly wanted to help me with my mounting housework. A busy woman, she multitasked and on a first date brought the guy with her to my apartment to wash dishes. She threw a dishtowel at him and told him to dry.  They were not together long,  but she and are now close friends.

My friend Heather is amazing. Once when I was having a weird cancer period, she let me show her my used pad so we could talk about the color of the blood. Friends don’t get better than that.

Lifting loads of laundry to keep our staples intact, scrutinizing doctors for us, letting us cry into the phone so we can sleep better at night and fight our fatigue. This is what good friends do. I don’t know if in every instance friends help reduce our mortality rate, but the good ones sure as hell can improve our quality of life.

What great things have your friends done for you during an illness? Who has made you feel less lonely, more loved? (Do I sound like Delilah yet?) Who is by your side when your health is grizzly and you are freaking out? Has your support ever come from unlikely friends, or people who you weren’t that close to before cancer?

I write, talk, and debate a lot about when as young adult cancer survivors we should reveal our illness to a date.  But what happens when we don’t even get to tell someone about our cancer because the grapevine beat us to it?

When I lived in San Francisco, some friends joked that I was The Dancer with Cancer.  It was news on the street among my extended social circle, and often I didn’t mind because many people who heard offered me help that I really needed: rides to doctors appointments, help with laundry.

There is a power to being about to decide to whom and when we reveal our illness, especially when it comes to dating.  Take  Sheila in Everything Changes who was extremely private - not even  disclosing cancer to her close friends.   On the other hand, Dana, also in my book, was relieved that when she and her husband began dating, he already knew that she had cancer.

In today’s New York Times Well Blog, Tara Parker-Pope interviews Trisha Meili, the Central Park jogger, who 20 years ago today was raped and brutally attached at age 28, resulting in brain injury.

“I met my husband on a blind date in 1995. A woman I had gone to college with knew him. I told her, ‘do me a favor, don’t tell him my history. That’s my story and I want to be able to tell it if I want to.’ In talking to him before we met, I had told him I went to Yale business school and the school of management. He mentioned it to a friend who had also attended Yale. She said, ‘You know who that is, don’t you?’ And she told him. In the end, it didn’t matter, but there was a little bit of that feeling, ‘Hey, that’s my story.’ The media keeping my anonymity is something that I do appreciate. I was known as the Central Park jogger, and when I told my story it was my choice. That was a degree of control that I had completely lost with the attack and the rape. When I’d meet someone it’s not like I would say, ‘Hi, I’m the Central Park jogger.’ It’s kind of a conversation stopper.”

Have you ever had someone find out about your cancer or another illness without you telling them?  Were you glad that they already knew, or would you have rather told them yourself?  In your circle of friends, among co-workers, in your family, did your cancer news spread like wildfire? Did you have a control valve that let you determine who knew?  If you could go back, would you do anything differently about disclosing your cancer?

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?

As a young adult cancer patient, I feel I have reached my quota of sickness. I don’t want more cancer, nor do I want my friends’ colds or their kids’ flus. Germs linger and it is easy to recycle colds within a household. If you, your roommate, your parents, your friends, or your kids have been sick, treat your dwelling like a New Jersey superfund clean up site.

1. Wash. Wash in hot water bed linens, towels, and the cozy throw you cuddle up with while watching TV.

2. Pillows. Launder pillows, or better yet, buy pillow protectors and launder them.

3. T-brushes. Crack out a round of new toothbrushes. (Purchase many at a time so you always have new ones on hand.)

4. Clothing. Wash scarves, jackets, or other clothing that comes in contact with your mouth or face.

5. Alcohol. Spray down knobs, remote controls, keyboards, counters, and cell phone with alcohol.

6. Pocket book. Cleanout and wipe down your purse or wallet.

7. Kleenex. Empty the mountain of Kleenex piling up in your trashcan.

8. Air. Open windows and crank a fan to get fresh air flowing. Live in a freezing climate? Air out while you are walking the dog, running to the store, or visiting your downstairs neighbors.

Do you have any other clean up tips to add to the list? Does it change your mental state to wipe away the physical grime? Do you ever avoid friends’ or family members’ homes because they don’t clean after colds?