In response to Pfizer’s voluntary recall of  levoxyl, I have received many comments from young adult cancer patients and others living with thyroid health issues. Many have asked what patients can do to urge the company and FDA to resume production of levoxyl prior to the target date of 2014.  I believe patient pressure on Pfizer and the FDA will have no impact; unfortunately we must instead experiment with other thyroid replacement hormones, like synthroid, and manage the burden of their potential side effects.  Here’s why:

King Pharmaceuticals manufactured levoxyl in their Bristol, TN plant until 2010 when they were purchased by Pfizer for $3.6 billion.  In August 2011, after conducting studies of its “Logistics and Plant Network Strategies”, Pfizer Global Supply announced it would close their Bristol plant by 2014, relocating elsewhere the production of levoxyl, among other drugs.  It is simply more profitable for the company to abandon levoxyl production at the Bristol plant and make the drug at another location.  On May 29, 2013, the Baltimore Business Journal reported on the acquisition of the Bristol plant by UPM, a Baltimore based company.  UPM will continue to manufacture some of Pfizer’s drugs at that plant for two more years, but  Pfizer has clearly stated that levoxyl will be manufactured elsewhere sometime in 2014.

Coinciding with Pfizer’s new cost-saving manufacturing plan for levoxyl is their voluntary recall of the drug.  A first voluntary recall of levoxyl, announced in March, was based on what Pfizer says were patient and pharmaceutical reports of a strange odor.  Pfizer’s website states: “Pfizer conducted a careful health assessment of the situation and concluded that this odor is not likely to cause any adverse health consequences.”

The FDA recommends a company take a series of actions in response to voluntary recalls, such as creating a plan for remedying the situation and reporting back to the FDA every two to four weeks with updates.  However, in recalls where no adverse health consequences exist, these actions are merely suggestions from the FDA and not enforceable regulations.

At the end of April, just weeks after the initial recall,  Pfizer announced a second voluntary recall when three batches of levoxyl,  made using a previous formulation, showed a potency level slightly below Pfizer’s standards.  Upon this second recall, Pfizer notified doctors that levoxyl production would cease until an undesignated date in 2014.  Because the variation was based on Pfizer’s own standards and not the FDA’s, government oversite does not play a role in this recall either.

Lauren Starr, a spokesperson for Pfizer, indicated to the Wall Street Journal on May 10 that the supply disruption of levoxyl until mid-2014 would not affect the company’s projected earnings for 2013.  (Pfizer is the largest pharmaceutical manufacturer in the world.  Their revenue for 2012 was $59 billion.)

Pfizer has no monetary incentive to rapidly resume production of levoxyl, nor does the FDA require them to do so.   Pfizer’s obligation is to company shareholders, not to patients’ demands.  This is legal and a perfect example of why a healthcare system based on the free market economy and weak government regulations does not benefit patients.

Do you agree or disagree that patient pressure on Pfizer and the FDA will not expedite the production of levoxyl?  Why?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about the US health system and its impact on your care.

I am allergic to routine.  The mere mention of the word ‘schedule’ makes me nervous.  I thrive on procrastination, such as writing a chapter or manuscript when the timing is right for me instead of by the calendar.  While my fly-by-night timing sometimes worries others, I know how I work best; under pressure I always meet a deadline.

But what happens when life itself becomes a tremendous pressure under the constant burden of illness or caregiving?  For me it is too much and routine becomes my salve.

Recently, a family member was in ICU.  It was scary.  I wanted to meet with the doctor on each of his rounds.  I wanted to make sure my loved one was getting the right meds, not being subjected to unnecessary tests, and receiving the best care possible.  I also wanted to make sure I got the rest and food I needed to stay healthy, especially given my rickety immune system, stress load, and exposure to hospital germs.

Each night I left the hospital around 10 pm.  I made sure to grab a meal with lots of vegetables and protein.  By 11 pm I popped a small dose of xanax, reserved for anxiety provoking times such as these.  And though I am not a fan of David Sedaris, I found a copy of one of his books on a shelf in my uncle’s apartment and read it every night as I fell asleep tucked into the living room sofa.  His writing felt like an NPR hipster version of Chicken Soup for the Soul.  His mildly entertaining stories and obnoxiously irritating points of view lulled me into the sleep I desparately needed to face the next day.  I made sure to read a page every single night.

Living with an acute medical condition, be it your young adult cancer or the flare of another illness, involves navigating the fear of the unknown.  The desire to have stability, a knowable schedule, and predictable routine makes perfect sense.  To exert some modicum of control of our out of control lives is sometimes the best medicine of all.  (Note: This post was written in the comfort of my bed five days before my house move and I have not yet begun packing boxes.)

For more tips on coping with young adult cancer check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My husband and I have moved twice in the last two years.  Both times our housing searches included ruling out apartments and houses in close proximity to a highway.  My man is an environmental attorney who enforces and defends the Clean Air Act.  He knows a lot about environmental carcinogens and together we have figured out how to make  logical choices about potential environmental harms.

Numerous studies show a connection between highway pollution and cardiac disease, pulmonary disease, childhood leukemia, and lung cancer.  Benzine, butadine, and particle-bound polycyclic aromatic carbons are some of the carcinogens emitted by vehicles.  Diesel soot is particularly carcinogenic and people who live near freeways are exposed 25 times more to soot particulate pollution.

The recommendation commonly issued by environmental policy organizations is to not live within 200 meters of a highway.  (200 meters equals 656 feet, or 218 yards, which is the equivalent of two football fields.) 

This can get confusing because our country is dominated by highways – even small, two-lane rural routes are sometimes called highways.  Studies I have read, such as one from the Sierra Club, suggest the greatest health risks are posed by highways in urban areas with dense population and industry.  One study sited the danger threshold as a highway that has 20,000 cars per day.  To put that number into perspective, the largest bottleneck areas in the country (interstate exchanges in cities like Chicago, Seattle, Washington DC, Atlanta, LA) have between 160,000 – 300,000 cars per day.  To find out how many cars traveled the major roads in the area where you live, google  “Annual Average Daily Traffic” + your city, region, or state.

When searching for a new apartment or house, if I read about a promising listing, I first google map the address to see how close it is to a freeway or major highway.  If it is within 200 meters I don’t look at any pictures or make appointments to see the place.  Why disappoint myself?  We have ruled out entire neighborhoods bordered by freeways, missed out on great rents, and passed up charming apartments for the sake of trying to reduce our carcinogens.

I don’t think that living near a highway necessarily means I will end up getting cancer again.  And if you are a young adult cancer survivor living near a highway and cannot afford to or don’t want to move, I don’t think it means you are doomed either.  But, if I have the choice to make, I will choose a home with a lower carcinogenic burden, greater than two football fields from a highway.

To read more about cancer and the environment, check out Everything Changes: The Insider’s Guide to Cancer in our 20s and 30s.

I recently tried to refill my prescription for Levoxyl and learned I cannot due to a recall by the manufacturer Pfizer.  I called Pfizer this morning and spoke to a robotic, though pleasant, customer service representative in India.  She provided little useful information.  Between my own research on the FDA and American Thyroid Association websites I learned the following:

* Pfizer has suspended production of Levoxyl, which is manufactured at a plant in Tennessee.  Chemical contamination is the reason for suspended production.  Emission of a strong odor was reported by pharmacists when opening 100 and 1000 tablet bottles of the product. 

* Patients do not need to discard or return Levoxyl that they already have.

* The recall was initiated on March 28, 2013 and Levoxyl may not be available again until 2014. 

* This recall impacts all strengths of Levoxyl.

* Pfizer cannot advise you on substitutes.  You should contact your doctor to create a game plan for alternative medication you can take during the shortage.

As a young adult thyroid cancer patient, each morning I pop a Levoxyl 137 mcg.  This  tiny blue thyroid-shaped pill is a big part of my healthcare routine.  I had a total thyroidectomy as a result of my papillary carcinoma, and because I have no thyroid gland to produce the hormone thyroxine, my blue Levoxyl pill is a substitute.  Thyroxine regulates cellular metabolism, which in turn controls functions such as my body temperature, heart rate, fat metabolism, brain metabolism, vitamin absorption, and much more.  My stellar doc at Memorial Sloan Kettering makes sure I take a slightly high dose of levoxyl, enough to make me hyperthyroid.  This causes a see-saw effect and lowers my thyroid stimulating hormone – TSH.  The thinking is suppressing my TSH will suppress the growth of any stray cancer cells.  What a beautiful idea.

I was shocked to learn about the Pfizer recall.  There are substitutes for the Pfizer patented Levoxyl, such as the generic Levothyroxine, or the drug Synthroid, manufactured by Abbott.  I have had side effects from each of these drugs in the past, but they are my only choice for now. (Look for an upcoming post on why I choose not to take ArmourThyroid, which is dessicated animal hormone.)

Due to the Pfizer shortage of Levoxyl, I started taking generic Levothyroxine two weeks ago and have begun to experience heart palpitations.  They feel like an intense fluttering in my chest, as though a rebellious caged butterfly is stuck inside my ribs violently struggling to get free.  They have occurred when I am driving but pass after a few minutes.  From prior experience on this drug, I know to just breathe deeply and stay calm. But I do think it is time to call my doctor back and discuss my options.

I am not a doctor. I am just one patient.  My experiences may not be typical or representative of what others experience. Do your homework, communicate with your doctor, and take charge of your own health care decisions.

Stay tuned as I will continue to post updates on the levoxyl shortage.  If you wish to receive emails of my updates, scroll down on the right side of this page and click on the navy blue bar that says “Get blog posts in your inbox.”

For more information about young adult cancer and chronic illness, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

For more conversation on thyroid medication, read my post How To Adjust To Thyroid Medication?

Studying the link between cancer and the enivornment is complicated.  Richard Acker, a young adult colon cancer patient and environmental attorney explains in my book, Everything Changes, the kunundrum of studying the hundreds of chemicals found in the blood stream of the typical American:

“Each chemical is thought to individually pose a minimum risk, but what if you have 150 things that are each individually minimal risks, but perhaps 3 or 4 of them together might cause a greater risk than we have ever learned about? It is difficult to isolate variables of chemical exposure because we are exposed to so many chemicals every day…

“Part of the reason they don’t do the research on cancer and chemicals is because the chemical companies don’t really want them to. And the federal government is not particularly enthused either about researching things that could cause economic impact if they were withdrawn or restricted. But also it is partly just the difficulty. You do the math. If you have one to two hundred chemicals, in order to research the potential effects of the combination of each of those, if you take a pair of every three or four of those chemicals, there would be hundreds of thousands of potential experiments. It would be totally cost prohibitive. And to do it on a large-enough scale where you could get statistically significant results, how could you do that? It would be extremely difficult, so I don’t totally blame industry or the government for not doing it. ”

Richard’s explanation is pragmatic and realistic.  So as a cancer survivor, patient, or someone generally concerned about their cancer risk factors, what do you do with this complex equation?  How do you begin to take practical steps to protect yourself from environmental carcinogens?  Is it even worth it?  Where do you draw the line between common sense reduction of exposure to toxins and living in a bubble, like Julianne Moore’s character in the 1995 movie Safe?  (A creepy, fantastic, and disturbing film.) How do you begin to parse out real information and practical, affordable solutions from greenwashing and/or costly, time consuming eco-trends and eco-tips?

The answer to these questions are different for everybody.  In a forthcoming series of blog posts I want to share with you some of the habits I have adopted over the past few years to reduce my exposure to carcinogens.  What is practical and affordable for me might not be for you.  My habits might seem too stringent or too weak.  Rather than setting forth a prescription for reducing your contact with carcinogens, I just want to give you a glimpse inside my life so you can try on for size what you wish.  Stay tuned for more posts in this realistic series on Reducing Your Exposure to Carcinogens.

For more info on cancer and the environment, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

As an oncology patient, it is easy to think that cancer is the center of the scientific and medical universe.  But as Laurie Edwards describes in her new book, In the Kingdom of the Sick, “Now more than 133 million Americans live with chronic illness, accounting for nearly three-quarters of all health care dollars.”  I believe the cancer community can learn a lot from patients, advocates, and activists living with other types of disease.  So, I was thrilled when Laurie wanted to interview me on this topic for her new book, which describes through research and stories the social history of chronic illness in America.

Looking back to AIDS activists in the 1980s and 1990s, I am astounded by the efficacy of their political action.  And what’s more, their illness was considered a gay disease.  If you think it is hard being a cancer patient advocating for  oncology research in the twenty-first century, try being a gay man with AIDS in the 1980s when you were blamed for your disease and seen as a physical threat to the population at large.  Amid this social climate, the AIDS community was still incredibly successful in their fight for research funding and access to treatment and care.

In America, heath care and disease management are policy issues.  The AIDS community knew this and they were extremely strategic and savvy in their fight to obtain funding for research and care.   But policy is a dirty word in the cancer community.  I have a hard time finding any cancer advocates or directors of organization willing to talk to me about the government  policies responsible for access to cancer research, care, prevention, and treatment.  (This is often because they are mistaken about the constraints of non-profit status and believe that they are not allowed to get involved with any political or policy issues, which is largely incorrect.)

The cancer community’s advocacy tactics are waged mostly through consumer driven battles rather than by policy or political fights, and our engagement focuses on individual responsibility instead of community action.  We ignore how to leverage our political strength to solve big problems in the cancer community.  I can hardly think of another advocacy group in the United States that has as many constituents as that of cancer survivors and their friends and families.  Clearly, we can get our loved ones on board to sponsor us in walks and races.  But could we get them on board to put pressure on their congressional representatives to guarantee access to chemotherapy for every American who needs it?  We don’t know because we have barely even tried.

If you want a different take on how an organized community can tackle their health care problems, start to learn about what AIDS activists were doing in the 1980s and 1990s.  Spend an hour or so reading ACT UP’s historical timeline documenting the AIDS movement beginning in 1987.  It is a pretty astounding read.

Also be sure to check out In the Kingdom of The Sick, by Laurie Edwards, which is being release today and available wherever books are sold.

Thyroid cancer diagnoses rates are increasing, especially among young women.  Many thyroid cancer patients undergo radioactive iodine treatment, a.k.a. RAI-131.  I have done so twice and learned along the way about how to cope with the seemingly bizarre low-iodine diet.

When I was going through preparation for radioactive iodine treatment, the list of permitted foods on the low-iodine diet seemed grim.  Low-iodine diet cookbooks only made me feel worse; I am simple, lazy cook, adverse to complicated recipes and substitutions.  Plus, I didn’t want my shopping lists, recipes, or meals to remind me that I was on a freaky diet and a young adult suffering from thyroid cancer.

What worked best was to prepare foods and recipes I already liked and normally consumed that also happened to fit into the diet.  I was surprised how many there were.  I’ll share a few in upcoming posts, but my favorite were roasted vegetables. These easy tips will give you a lot of different dishes from this one simple cooking method:

ROASTED VEGETABLES

* Before roasting your veggies, check with your doctor to see what vegetables you are allowed and if you can have olive oil and NON-iodized salt.  Diets can vary from doctor to doctor so be sure to ask!

* I particularly liked roasted carrots, asparagus, sweet potato, and butternut squash for the bright color and flavor they added to this often bland diet.

* It’s boring eating mixed roast veggies meal after meal, so I cooked and ate each kind of veggie separately: Roast carrots at lunch, roast asparagus at dinner.

* Roasted carrots really satisfy a sweet tooth craving.  They’re no substitute for chocolate peanut butter pie, but they’ll help get you through.

* Parsnips, zucchini, mushrooms, beets also roast well.  And, asparagus tastes great with a squeeze of lemon!

HOW TO ROAST

1. Wash your vegetables and dry very well.  (Extra water on your veggies will prevent the oil from coating well and you won’t get as good of a roast.)

2. Cut your pieces in uniform sizes so they roast evenly.

3. In the biggest bowl you can find, toss vegetables with olive oil and NON-IODIZED salt. (Check with your doctor first to make sure you are allowed non-iodized salt.)   Tossing in the biggest bowl possible really helps give an even and thorough coating of olive oil.

4. Place roasted veggies on a rimmed baking sheet or in a shallow baking dish.  And bake in the oven at 400.

5. Cooking time depends on the vegetable and how thickly they are sliced.  Cook until very tender.  Taste a veggie.  If it melts in your mouth and makes you smile, it is done.

Read more tips on day to day life with thyroid cancer in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I love getting emails from readers and have recently received lots of emails about becoming an author, publishing, and writing about cancer.  This is a favorite subject of mine.  Yet, instead of crafting a new post on young adult cancer and writing, I decided to scavenge the archives of my blog and share a round up of my previous posts on the subject so you can reference them all in one place.  Happy reading (and writing).

Does making art help you deal with illness?

Has poetry helped?

Addicted to your illness?

The importance of writing for yourself.

How to start writing about your cancer?

Should you write a cancer book?  #1: Self-publishing

Should you write a cancer book? #2: Writing mentors

Should you write a cancer book? #3: A tale of two publishers

Kairol Rosenthal is the author of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I wrote an article for the New York Times about cancer and brain fog.  It was really helpful to out myself as someone who is, at times, incredibly insecure about her mental and intellectual capacities post-cancer treatment.  It blew me away to read the comments section and see that I was not alone in adjusting to post-cancer brain fog.

Many cancer patients have confessed to me a desire to go back to school, but a fear that their scrambled brains cannot handle it.  I get it.  So I recently decided to risk fumbling through a college course in the privacy of my own home via a MOOC (massive open line course).  I took a free online class called Introduction to the US Food System: Perspectives from Public Health.  The class was offered by Johns Hopkins University through coursera.  Propped up in bed at 11 pm, I geeked out on food growth and distribution graphs, and became curious about topics I had never thought of before: How does the growth of biofuel crops impact feeding the hungry?

It felt so good to be using my brain, taking notes, forming hypotheses, and learning new information.  Here are a list of places where you can do the same and see how it feels on your cancer brain.  Note that the course selections can feel limited, and just like any other class they are only as good as the teacher teaching them:

Coursera

Udacity

Edx

For more on chemo brain and cancer brain fog, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I did not have a public blog until after I was done with treatment and had already written the entire manuscript for my book.  I have a lot of grim and foul thoughts about cancer and its impact on my life.  These thoughts are not on this blog.  They are in 12 spiral bound notebooks in a big storage box in my closet.  And I intend for them to stay there.

When I was going through treatment I never thought about journaling as a task.  The word alone conjures images of haggard ladies sitting around a  new age bookstore with purple notepads on their laps scribbling experiences that I’d rather not know about.  So, no, I did not journal.  I just spewed thoughts on the page at all times of day or night.  My notebooks did not contain full sentences, fleshed out ideas, nor a sense of composition. Most of my handwriting was illegible.  I was just trying to survive and my instinct was to put words on the page.

I love being a blogger and an author and using the screen and page to share ideas, resources, personal experiences, and coping tricks and tips with other young adult cancer patients.  But the best advice I have for any cancer patient wanting to write is to have a separate writing space where you don’t have to think logically, where no audience is present, and you can let the shit hit the fan in whatever way it wants to.  In a culture where the need to share via twitter and facebook is often a compulsion, it is quite peaceful writing for nobody but yourself.

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.

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.

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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.”