Everything Changes - The Guide to Young Adult Cancer

Camel Lights were my brand my sophomore year of college.  I lived in New York City, was dancing, reading poetry, and feeling very cool at the Hungarian Pastry Shop with a cigarette in my hand.  I was one of the people I would now like to scream at for polluting the air.

I was diagnosed with thyroid cancer at age 27.  (Completely unrelated to my year of off-and-on smoking in college.)  I had surgery and two rounds of radioactive iodine treatment, none of which was targeted at my lungs.  Still, I have become extremely sensitive to smoke since my cancer care began.  And, I now live in Philadelphia, which has the highest smoking rate of any major city in the United States.

Second hand cigarette smoke determines where I walk on a sidewalk, what apartments I can rent, and forces me to keep my windows shut in the summer.  I cannot sit in a theater, on a bus, or stand in line next to a smoker.  Their smoke laden clothes send my lungs into a spasm.  If I meet a potential new friend and discover they are a smoker, I don’t make attempts to build a friendship.  Why put my lungs through the burn?

Although I wish for a smoke-free world for my own health and comfort, I also think about it because more people die from lung cancer than from any other kind of cancer.  I wonder, what if the anti-tobacco crusade were as powerful and as visible as the campaign to find a cure for breast cancer?

According to the CDC, “Each day in the United States, approximately 3,800 young people under 18 years of age smoke their first cigarette, and an estimated 1,000 youth in that age group become daily cigarette smokers.”

As a young adult cancer patient, I am motivated to learn more about what it will take to reduce smoking rates in this country.  I’ll keep you posted about what I find out along the way.  Until then, perhaps you could send this post along to the smokers you know just so they understand that when I roll my eyes at them and cough until I almost puke, I am not trying to be obnoxious.  It is just self-preservation.

For my book Everything Changes, I interviewed a young adult cancer survivor whose body could no longer produce eggs nor carry a child.  When she met her husband, he was set on having children with his genetic material.  So, they found an egg donor and hired a separate woman as a surrogate who carried the children.  They now have twins, the surrogate is in their lives as an aunt, and while the survivor loves her children, she still has some residual emotional challenges about how they were conceived.

What interests me as much as the decisions cancer survivors make in response to their complex family planning needs is the conversations they have both within themselves and with partners, and how they arrive at and live with their decisions.

Tim Buckland is a 26-year old, two-time testicular cancer survivor.  When diagnosed, at age 18, Tim banked sperm.  Unfortunately it was unviable.  A year after treatment, he met a wonderful woman who became his wife.  Tim writes the following about the family planning challenges they are currently facing:

“I initially dealt with infertility in an egotistical way. I naively thought that since I was the one that couldn’t have children, this was my ‘cross to bear’ and not my wife’s. It took a lot of opening up and a number of conversations before I realized that this was now our problem, not solely my own.

There are a number of options available to have children and they all come with pros and cons. We considered everything from sperm and embryo donors to open and overseas adoption. Having a conversation with my wife about sperm and embryo donation was incredibly complex. I felt an intense sense of ownership about the idea of our children: These children would not be genetically mine but they may be genetically my wife’s. We discussed being resentful that the child wasn’t genetically mine, the surgical and uncomfortable side of in vitro fertilization, and the sheer cost associated with these techniques.

Alternatively we discussed adoption, thinking this was our best bet to starting a family.  We live in Alberta Canada where all adoptions are mandated open adoptions.  We went to an adoption conference and were utterly crushed when we learned open adoption was much more complex than we anticipated: The birth mother, and potentially the birth family, is now a part of your life, with scheduled meetings and interactions. This tends to be best for the child as they will be able to know more about their history than in a closed adoption. However, this changes the type of undertaking you are placed into, a new child and a new extended family. When we realized open adoption might not be for us, we realized that we just might not have children. We had two days of being depressed followed by a number of long conversations about our options.

We tried to look at all the options and balance how we felt with what was best for our lives. Making this process more difficult was seeing friends, family and co-workers having children. At the end of the day we decided that we couldn’t find a suitable option and therefore are not currently pursuing children. Although it is emotionally difficult to stomach, we believe this is the best option for us; at least for the time being.”

Check back here in the upcoming weeks for more posts in this series on young adult cancer and family planning, including perspectives from a young adult survivor who chose open adoption. 

I have had two separate rounds of radioactive iodine treatment for thyroid cancer.  I won’t kid you.  The low iodine diet is no picnic.  It contains an odd list of limiting foods.  And, it is a royal pain in the ass to think about fixing special foods when you are dealing with the anxiety of cancer and the fatigue of RAI preparation.  But, there is hope.

I want to share with you ways I found to make this diet simpler, less taxing, and even delicious.  I’m starting a low-iodine diet cooking series on my blog.  Today is the first installment and covers basics tips on how to organize your food, fridge, and energy.

Low-Iodine Diet Basics

1. Ask for help from people who get it.

Food prep is a tangible task for friends and family who want to help you through your treatment.  Only give this task to reliable people who you trust to follow this diet to the letter of the law and who understand you cannot crack open a can of soup if they forget to show up with their promised food.  Give them links to information that explains the diet and review with them the guidelines so there is no confusion.

2. Clear a shelf in the fridge and tape to it a pretty “Off-limits” note.

It takes time and effort to have enough of the right foods to make it through the diet.  You don’t want your roommate, partner, or kids accidentally chowing down on your low iodine diet food.

3. Have lots of food storage containers on hand.

Whether you or someone else is doing the cooking, you should cook enough for multiple meals so you always have a few days worth of food in the fridge.  Your containers don’t have to be fancy, just clean.  If you are on a budget, thrift stores are a great place to find tupperware.

4. Don’t under estimate snacks.

It is easy to focus on what you will eat for breakfast, lunch, and dinner, but on the low iodine diet I found it best to eat regularly throughout the day.  For many people this diet feels very depriving.  Fight that feeling by not letting yourself get too hungry.  Eat snacks throughout the day.

5. Make your food look beautiful.

The psychology of a pretty plate can do a lot to boost your appetite when you are feeling the vice grip of restrictions and rules.  Gather unusual plates, glasses, napkins from around your house to eat off of during your diet.  Put water in a wine glass.  Make your green salad pop on a turquoise plate.

Stay tuned for more low-iodine diet strategies and recipes.

For more practical tips on navigating life with thyroid cancer, read Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.

Yesterday I received a comment on my post ‘Should You Write A Cancer Book?’ from an osteosarcoma survivor named Tamara wrote: “I would love to write a book and share my experience with those that are just starting the journey but I don’t know how to start.”

Though cancer is a monumental experience that we’d like to convey to others, our written story is only as compelling as our words make it.  More important than how to start writing about cancer is to start knowing yourself as a writer.

Take time to experiment and discover your writing style, tone, and creative process.  Do you want to convey emotions, practical solutions, a journal, or something else altogether?  Do you enjoy writing in a descriptive, detailed, realistic, dreamy, or matter-of-fact tone?  Are you a linear thinker who needs a logical plan for a project, or are you prone to passionate tangents of thought that eventually weave together?    Do you need a disciplined writing schedule or are you more productive if you only write when you are moved to?  The only way to find the answers to these questions is to just practice writing about anything.

Remember the song: “Let’s start at the very beginning, it’s a very good place to start”? This is the anti-thesis of how I write.  I start out in left field and prefer to not know where I am headed. I let ideas flow but also heavily edit my work, eventually trashing parts I love but know don’t serve the piece as a whole.   I am not even particularly concerned with the accuracy of my own memory.  During surgery, treatment, and recovery, I profusely wrote in 12 spiral bound journals.  I never referenced them nor included any of the material in my book.

My cancer book began by sitting in a big empty studio, blasting Belle and Sebastian, and making drawings on paper towels that were meant to become modern dance choreography.   I had never written non-fiction prior to the publication of my book Everything Changes; for a decade before my young adult cancer diagnosis I was a choreographer.  My program notes for the performance grew so lengthy that I ditched the performance and turned the program into the seeds of my full-length non-fiction book.

Figuring out how to write about my cancer sounds like a daunting task.  Be easy on yourself. Maybe start writing about something entirely different for a while.  It just might lead to your cancer story.