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?