Everything Changes - The Guide to Young Adult Cancer

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, 2023 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.