Everything Changes - The Guide to Young Adult Cancer

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.

I don’t watch television news.  The reasons are many.  Here are the ones that relate to my cancer:

As a young adult thyroid cancer patient, my immune system is vulnerable.  The sniffles to someone else usually lands me in bed for two weeks. I am hyper vigilant about my health.  At times even a hypochondriac.   (See my post Scared of Every Little Ache and Pain.)  I will likely always have some amount of hypochondria, but I have learned that to control and reduce my anxiety around illness.

There is needful worrying about my health.  It is perfectly natural for me to be scared about an upcoming scan. There is also needless worrying about my health. Obsessing over colds and viruses does nothing to improve my quality of life.  While I cannot flip off the worry-switch, I can reduce my exposure to hype.

When I heard of the potential flu pandemic, I wanted to more info.  While at my grandma’s house I caught a two-second TV news blurb: an interview with a pharmacy manager at Wal-Mart.  Not helpful.  On NPR, I got a conversation with a woman who lives in my neighborhood who isn’t letting her kids go to the Children’s Museum.  Not helpful.

So I got rational.  I went online to seek useful stories instead of sensationalism and quotes from credible experts instead of the average Joe.  Fear sells and it is easy to produce.  It takes a lot more work to seek out my own news sources instead of it being spoon-fed health hype.  But I value my sanity so I make the extra effort.  I am still the Purell Queen and stay as far away as I can from extra-germy people and environments.  The idea of getting the flu is horrifying.  So I’ll turn off the TV think about something else instead.  I am sure in a week or two the news will have moved on to new and scary ways I might die.

To read more about cancer and anxiety, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

In preparation for appointments with my doctors, I search Pubmed.gov, a free online database of nearly every medical journal and article in print.  I read articles related to my cancer, print them out, and share them with my docs to review new options for my care or confirm we are on the right track.  As a young adult cancer patient, I have been doing this for nearly a decade.

I enter a search term into pubmed.gov. (Here are some general examples of search terms: ‘tamoxifen resistance’ or ‘radioactive iodine uptake’ or ‘testicular protheses’.) Next I click on the title of an article that sounds like a good match.  Then I read an abstract, a one paragraph summary of the article, to see if the full article will be of use to me.

Sometimes a link is provided to “free full text”.  But the biggest stumbling block is when the “full text” link leads me to a page where I must purchase an expensive copy of the article from the publisher of the medical journal.  $30 for an article, that may or may not be useful, is not in the financial budget of most young adult cancer patients I know.

Luckily, I recently found Loansome Doc.  It is a system developed by the National Library of Medicine.  It connects you to a health science library in your region through which you can order online the full text for free.

The process of signing up and getting an article is a bit confusing.  Set aside a half-hour to become familiar with Loansome Doc:  Read the FAQ about Loansome Doc.  Click through the maze of links.  If you need extra assistance in finding a regional library to connect with, call 1-800-338-7657, Monday - Friday 8:30 AM - 5:30 PM. Then ask the librarian in your region to help you with the process. It is a bit of a hassle, but aren’t the potential pay offs worth it?  I think so.  Being an educated patient can increase the quality of your life and sometimes even save your life.

For more tips on how to research your cancer and treatment options, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Sorry, comments are closed for now.  But feel free to send me an email via the ‘contact’ tab above.  I always respond to emails from young adult cancer patients.

I was diagnosed with cancer at age 27 and have gone on to become a major advocate in the young adult cancer community.  It is truly incredible to see how many people rally around the cause of cancer when they or a loved one is touched by this killer disease. Gun violence is a disease too.  And one that can be controlled a lot more easily than cancer.  With gun violence we don’t need to spend over three decades unlocking the secrets of science.  We simply need strict gun policies, enforcement, and regulation.  Gun shootings and gun deaths are preventable.  I didn’t beat cancer only to get gunned down in a shopping mall, temple, or movie theater.

Here are some facts from the Violence Policy Center that recently startled me:

“Firearms are the second most frequent cause of death overall for Americans ages 15 to 24.”

“Direct medical costs for gunshot wounds total more than six million dollars a day. Nonfatal gunshot wounds are the leading source of uninsured hospital stays in the United States, with an estimated half of such costs borne directly by the public.”

I fight so hard each day to help improve the quality of life for young adults and to reduce the out of control costs and tame the haywire finances of our healthcare system.  Young adult cancer touched my life, so it is an obvious way to focus my efforts.  If I could have prevented getting thyroid cancer I certainly would have.   If I can prevent myself and my loved ones from becoming victims of gun violence, why wouldn’t I?

I am learning about the smartest, most effective ways for me to engage in the movement to end gun violence. I have signed up for action alerts from the following reputable organizations and I contacted the White House and my members of Congress to express my opinions.  I hope you will do the same.

Demand A Plan - Easy steps for contacting Obama and your Senator

Violence Policy Center Action Network

Brady Campaign to Prevent Gun Violence

Coalition to Stop Gun Violence

Please share this post and resources with other friends and loved ones in the cancer community!

I have always been a geek for research, and often on dark topics.  In tenth grade I wrote a 15-page paper on infanticide in China.  In eleventh grade, my English term paper was on Sylvia Plath’s suicide and her parents’ holocaust experiences.  I have no idea why I tend to such morbidity; I am really a very happy person.

When I was diagnosed with cancer at 27, it was second nature for me to dive into research and learn as much as possible about my disease and supportive resources.  My surgeon joked that I could join his fellows on rounds.  Oncology social workers often commented that I knew more than they about the benefits available to me.

I’ve earned a reputation as someone good at helping people make sense of recent diagnoses.  I am asked regularly, by strangers, friends and family, to gather information that will lead to efficient and sensible care in hopes of alleviating their suffering. I am so used to people wanting my help that for the first time, I have approaches to a family member’s heinous medical condition and nobody is interested in my findings.

Inside I am a four year old throwing a temper tantrum shouting, ‘Listen to me! Listen to me!’  How do doctors deal on a daily basis with patients ignoring their prudent recommendations, opting instead for poor health choices?  It isn’t that my ego can’t handle it; It’s my heart that’s having a hard time not being able to lessen the pain of someone I love.

I cringe at spiritual jargon, yet a few times today I have thought of the serenity prayer.  You know, the shtick about accepting the things you cannot change. I’m also thinking of the cliché horse whom you can lead to water but you cannot make him drink it:  You can lead a patient to a great list of top docs but you cannot make them call.

As a young adult cancer patient, people have offered me unsolicited advice, mostly about alternative and natural medicine.  Their well-intentioned suggestions make me want to smack them upside the head.  And, even though my suggestions to others are based on science, clinical trials, and the highest standard of care, when my ideas are unsolicited, I supposed they too want to smack me.  It is hard to accept that people we love are just going to lead the lives they want, not the ones we want for them.

For tips on how to conduct smart research about your disease, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I remember sitting in my mom’s car in my mid-twenties, tears sliding down my face.  “Mom, I have something to tell you: I don’t want to have kids.”  I felt horrible denying her grandchildren, and felt like there was something wrong with me too.  Everybody I knew was feeling the biological clock ticking or was at least excited about the prospect of it in the near future.  My mother was, and still is, incredibly supportive and understanding.  For me, it has been a harder ride.

There are lots of reasons I’ve never, ever wanted to have children.  I’ve always felt my career was more important.  I’ve felt (and still feel) that I can do more good in this lifetime trying to help a part of society rather than focusing intensely on raising one or two people.  Plus, as a nanny for many years, I got a great glimpse into what parenting is all about. Sometimes I wonder if I used up my parenting credits on someone else’s kids.  But I suspect that I’m probably just an educated shopper and that if others took a test drive before committing, our population would be smaller.

Pregnancy has always seemed to me like illness, with doctors, check ups, and bodily changes beyond my control.  The idea of something growing inside of me reminded me of a tumor long before I was ever diagnosed as a young adult cancer patient.  I’ve always been a big fan of adoption, hoping that if I ever wanted to change my mind about parenting, adoption might be a fall back.  (Though, while researching cancer and family planning for my book Everything Changes, I’ve learned that adoption isn’t always an open door to acute or chronically ill patients.)

I try hard, and most often succeed, in feeling empathy for cancer patients who as a result of their disease cannot conceive or carry a child.  Though most often, I say to myself secretly, I wish we could trade reproductive systems so I would not have to worry about birth control.  I suppose this harsh but realistic thought is better left unsaid.  Though I do wonder if I am the only one out there thinking it.

The process of finding life beyond cancer has been a slow.  Young adult cancer enveloped my identity for years.  I’ve had an unusually complex case of thyroid cancer, one that has lingered and left me in limbo land.  I’ve had no medical threshold to cross that clearly indicated I was in remission, or that I was physically beyond cancer.  But even if I did, I’m certain I’d still have been confused about how to live beyond my cancer identity.

What I needed most was not a category in which to place myself; It wasn’t about ‘patient’ vs ‘survivor’.  What I needed was time.  Lots of time.  A few years time.

I started by taking baby steps away from the cancer community.  I forced myself to volunteer for causes having nothing to do with health care.  I made sure I was reading and writing about issues outside of the medical world.   I put an emphasis on talking to my friends about subjects other than my health, and tried to become more engaged in their world since for so many years the topic of phone conversations was my own cancer diatribe.

These actions were helpful in peeling away my cancer identity from my everyday life.  But they certainly were not enough.  It was not strategic actions or a new mind set about a post-cancer self-image that got me to my life beyond cancer.  It was something much more subtle.

I was not able to easily shed worry, fear, and hypervigilance about my health.  Instead they gradually became background noise that for the most part has drifted away.   I’ve needed to think of people with cancer as “others”.  I wanted to be a solo person and not part of the cancer club.  I had no agenda around any of this, but rather let it happen and was careful not to judge my own actions and distancing.  I did not intentionally choose when to say I “had” cancer.  Technically I’ve still got tumors in me.  But over time I think my mind had enough of being a cancer patient.  And I let the past tense slip out more and more.

Some days I wanted to morph like hell beyond my cancer identity.  Other days I needed to cling to it fiercely.  What worked best for me was just letting it happen knowing that everything changes.  I feel great these days just being Kairol Rosenthal, with no cancer label attached.  I think the process of moving beyond cancer is different for everyone.  For me I just had to remember, “All in good time my pretty, all in good time.”

The Internet is brimming with unauthoritative, mis-information about cancer, its treatments, and cures.  Some shoddy information is easy to spot, such as a clinically unproven diet trends.  Other information, like an intelligent comment from an experienced chat room moderator, can be harder to vet. Given the crap-to-value ratio of online information, I understand why doctors often head for the door when they hear from a patient the words “I read online…”

Getting doctors to pay attention to you can be challenging, especially when you are a young adult cancer patient.  Even the kind and caring ones are busy.  That is why when I visit a doctor, I ask questions based on information I know they are going to take seriously.  This information is usually from a medical journal or a respected organization such as The National Cancer Institute.  When I present this information, I print a copy for my doctor, I highlight the source, and I say, “I found this information from The National Cancer Institute” or “I read this JAMA article”.  Never do I use the phrase “I read online.”

When you begin screening your own online medical research through the eyes of a doctor, you too are less likely to zap your energy reading empty-promise cancer cures.  There is nothing wrong with indulging in fluffy stuff as a good cancer distraction.  Just stick to fluffy stuff outside of the cancer world (my favorite is Apartmenttherapy.com).  Save your online cancer time for worthwhile information that can actually impact your care plan and increase your knowledge of your disease.

Read a simple step-by-step guide to doing online medical research in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.