Everything Changes - The Guide to Young Adult Cancer

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?

By Jackie B-F

“What’s that scar on your neck?” I wasn’t even 20-minutes into the first day of orientation for my Master’s program and my scar had already been noticed. I have been debating the whole summer about how to disclose my cancer at my new school. I am proud of my diagnosis and I am happy to talk about my experiences with cancer, but I didn’t want cancer to be my first introduction to students and faculty. I’ve thought about some ways I can disclose my cancer at school:

I can choose to only tell some of truth. When asked about my scar at orientation, I was caught off guard and told the student about my cancer diagnosis. However, there are other ways to disclose my medical conditions that don’t involve the “C-word.” I could have said, “I had surgery” and left the conversation at that.

A wardrobe change might also be in order. I’ve accumulated a lot of cancer shirts and bracelets since being diagnosed, and I wear them proudly! However, I’ve chosen to set them aside for at least the first few weeks of school. That way I can disclose my diagnosis in a more organic way and not because my shirt says so.

I may not want to disclose to everyone at school, but letting my professors know can be very helpful. If I end up missing a lot of class, they deserve to know why, and some professors may be willing to help me catch up during their office hours. Professors are often supportive and can be a good advocate. I’ll probably let my professors know within the first few weeks of classes.

Ultimately, I have to do what feels right for me, and remember that I was accepted into school for my smarts – not my cancer.

We are asked to disclose our cancer in a variety of settings. How do you choose who to tell and who not to tell? Have you ever had to make up excuses on the spot to cover up your cancer?

To learn more about disclosure at school, your legal rights, and how the office of student disabilities can help you, read the book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I cannot get rid of my cancer. But lately I’ve wanted to get rid of things that remind me of my cancer.

Prior to my diagnosis, I felt like everyday objects could hold power. A glittery ribbon on a package sent by my best friend had the ability to make me feel more powerful in the world. Coveting the ribbon, I’d set it on top of my dresser and look at it daily. But I’m not that gal anymore.  Cancer has obliterated a lot of my desire and ability to feel things on a deeper level. I’ve got enough sensations and emotions flying around in my head thanks to medically induced hyperthyroidism. In response to this overload,  I want to scale down keeping things simple.  I don’t have the energy to feel so attached to objects and sentiments.  The ribbon is now a ribbon - not a reminder. And it’s no longer on my dresser.

It’s getting colder outside. I’ve switched my summer jammies out for my winter PJ’s. I have six Calvin Klein PJ pants I bought nine years ago at Marshall’s after I was diagnosed. They were not retail therapy purchases, but rather my new uniform. I’ve racked up thousands of hours in bed and on my couch in these clothes. The fabric is thinning. The legs have grown. I’m a total miser and know I could get another season out of them. But do I want to go to bed every night wearing my thyroid cancer uniform?

These pants are just pants. They don’t hold any power or negative energy. But they did come from a time in my life I don’t want to remember so much anymore. It would be better for the environment if I got a tenth and last season out of them. But I think it would be better for me if I didn’t. I’m heading to Marshall’s tomorrow for new PJs. While I’d like this to be a casual shopping trip, there might be some ceremonial undertones and maybe a lump in my throat. That is, a lump in addition to the two tumors nesting in my neck.

Do certain objects remind you of cancer? Do you covet them or want to trash them?

Read more about coping with the before’s and after’s of life with cancer. Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Was it because I was twenty-seven, a woman, or both that my doctors doubted my capacity to participate in serious dialogue about my cancer? They presented me with only the thinnest shreds of pre-digested information about my care. I played a constant charade to glean from them answers that reflected the complexity of my disease. My greatest asset: my InterArts degree in theater and choreography.

Acting classes taught me how to build a facade. I held back tears instead of bawling. I straightened my spine with confidence instead of slumping in defeat with the news of recurrence after recurrence. Employing gripping, direct eye contact, I forced my doctors to focus on me instead of shuffling papers.

A quick improviser, I read and responded to my surgeon and endocrinologist in a flash, returning their comments with complex questions. I packed rapid-fire dialogue into my five-minute appointments, the clock no longer an excuse for their Patient-101 spiels that were rungs below my level of medical comprehension.

Abandoning the role of dumbed-down patient, I favored playing a mentee eager to learn from my doctors. I changed my costume accordingly. While I preferred the snuggly garb of hoodies and sweats that accommodated my cancer lethargy, I instead wore skirts, v-neck sweaters, and makeup.

As I perfected my charade, the time, attention, and intelligent answers I received from my doctors increased. My surgeon started joking that he was going to make me his fellow and take me on rounds.

I began to wonder if I was subtly whoring myself to my doctors to get the care and consideration I deserved. They were all men. My legs are ridiculously long and I look pretty hot in a skirt. Would I have succeeded if I were overweight or wore my favorite Old Navy fleece sweats? And, if my doctors were women would my tactics still work?

When I spoke about my findings from studies I researched on Pub Med, I sandwiched my statements between heavy doses of wit and charm. Did my doctors’ male patients have to play the ditz game to camouflage their smarts?

Over the past ten-years, my doctors and I have often changed the course of my treatment based on rational problem solving ideas I presented to them that were frequently in opposition to their initial orders. I’m proud of the care I’ve received. It wasn’t always handed to me. I worked hard for it, falling apart tired to the bone when I came home from my appointments. Am I any less proud because of the tactics I used? Not at all. I’ll leave that shame for my doctors.

Have you used tactics to get your doctors to pay more attention to you or answer your questions on an in-depth level?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how other young patients manage appointments and hospital stays.

Most people are psyched to play match maker between cancer patients, thinking if they know someone else with your kind of cancer, of course you’ll hit it off and become friends.  This is when phone numbers are given and the match making begins.

In Everything Changes, I wrote: “In my first six months of living with cancer, I received enough phone numbers of friends of friends with cancer to fill a small Rolodex. Picking up the phone and calling a complete stranger, twice my age, with cancer was just as appealing to me as calling the nice, single Jewish boy whose mother had met my mother at synagogue. It wasn’t going to happen.”

Sure, now I love talking to strangers about cancer, but I waited to do it when the time was right for me, and with patients whose values interested me.  Just because two people have cancer does not mean they have compatible values around medicine, treatment, or emotional styles and religious ways of coping.  Plus, I want to feel connected to the person about something other than cancer: I’ve met plenty of cancer patients who are just as crazy or unappealing as anyone else in the general public.  It’s all very much like internet dating.

I like Imerman Angels, an organization that matches “fighters” with “survivors”. They’re great yentas, taking into account things like if you’re a college student, parent, young adult, and the stage of your disease.  And, it can be nice to find someone to talk to because you want to, not because your very well meaning neighbor thinks you need it.

I love it when my phone number is given out to newly diagnosed patients.  I hope they will call, but I never expect them to.  I totally get that most people aren’t into the dial-a-stranger routine.

Did people try to do cancer match making with you? How did it go?  Do you like having direct contact with other patients or prefer more anonymous  communication, like reading blogs? What’s match making like if you have a rare form of cancer?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about my cancer conversations with complete strangers.

I was asked to write a guest blog post for Dear Thyroid about having cancer around the holidays.  But being an atheist-Jew, I truly was at a loss for words. I had to pass. This is just not a subject I know much about.

So I thought I would turn it over to you guys to educate me a bit more about what the holidays hold in store for anyone who is facing illness.  Have at it.  Leave a comment with stories, kvetching, tips, rants, or good memories about what it is like to be sick and dealing with:

Family, food, lethargy, expectations, looking like crap, feeling like crap, feeling great when others think you should feel like crap, travel, germs, sibling rivalry, office parties, being broke, being grateful to be alive, wondering if this is your last Christmas, being on chemo or in the middle of scans or treatments or staying in the hospital during X-mas, low-iodine diets during X-mas, feeling like a loser for not having New Years plans, not caring if you have New Year’s plans, or anything else your heart desires.  School me about illness and the holidays!

Learn more about how young adult cancer patients cope with family encounters in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

“Are you going to write in your book about the people who died?  It is so depressing,” a person in the publishing world asked while I was writing Everything Changes.  My answer: a polite version of “You better f***ing believe I am.”

How could I write a book about cancer and exclude the people who died and their families?  Yep, it has its sad moments, but that’s why cancer sucks.  That’s why we raise money for research.  That’s why I write a blog and wrote a book, and promote young adult cancer organizations: all so we can support each other around the pissy hard times.

Charissa is an recent widow who I’ve become friends with.  She is an incredible woman who I adore.  (See her recent post Mourning As A Young Adult?)  And I love my regular communication with a few different patients who are end-stage.  The death aspect of other people’s cancer experiences does not freak me out.  I don’t know why.

There are,  however, many young patients barreling through illness who do choose to steer clear of relationships with end-stage patients and grieving partners.  I do not judge these patients for giving a cold shoulder to death and hence a brush off to other patients and families facing it. The need to cocoon yourself from death when you are a young adult trying so hard to live does make sense to me.  Plus, I have papillary thyroid cancer - a disease from which very, very few people die, so I’m never faced with the question of communicating with someone who is dying from my disease.  Maybe it would make a difference to me… maybe not..

But let’s look at the other part of the equation: The patients and families who are facing death.  They’re still part of our community.  Cancer doesn’t end when you stop taking chemo.  Cancer doesn’t end when you enroll in hospice.  Cancer doesn’t end when your partner, who had lymphoma, has been dead for nine months.

Yet, I talk regularly to end-stage patients and grieving families who say they feel unwelcome in the young adult cancer world, from seemingly simple conversations where patients insist that everyone is a survivor and nobody is a victim, to feeling unable to express their fears of dying or phases of mourning in chat rooms, at conferences, and in support groups.  That stinks.  And it needs to change.

Have you ever avoided dying patients because they feel unhopeful to your own survival?  If you’re end-stage, have you found support in the young adult cancer world and what do you want that you aren’t getting?  If you are grieving, do you want to stay connected to the cancer community and how have you been received?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Spoiler alert: most of the people are still living but not all of ‘em.

I do.  Read this book: Your Brain After Chemo: A Practical Guide to Lifting The Fog and Getting Back Your Focus by Dr. Dan Silverman and Idelle Davidson.

The best trick for cancer brain fog is to learn about it and become empowered. Your Brain After Chemo provides copious information on cancer brain fog, how it works, and how to talk to your doctor about it.  Written at what seems like a 8th grade level – it’s a super easy read for a fried cancer brain.

“Knowledge is power” sounds cliché, but I felt more in control of my brain after reading this book.  Why?  Young adult thyroid cancer patients (I’m one) have been shown to complain of memory problems more than any other group of young adult cancer patient, but rarely are we treated with chemo. It was extremely validating to read that memory problems may also be caused by fatigue, depression, anxiety, and sleeplessness.  (Hence, I am starting a personal campaign to stop calling it ‘chemo brain’ and start calling it ‘cancer brain fog’.)

Chapter 6 talks about different kinds of concrete brain tasks.  It helped me realize there are a plethora of ways in which my brain still functions beautifully.  And, it provided more technical concepts for describing the ways in which my brain is on the fritz.  This improves my intellectual self-esteem. I now tell myself I have a hard time with verbal memory; much kinder than saying my brain is screwed and I’m an idiot.

The book fell short in a few places: I take with a grain of salt studies with only 24 participants, and there were a bunch cited in this book. (Granted “chemo brain” has been under acknowledged and under researched until now.)  The brain food section seemed contradictory and a bit superficial. The book lacks a 411 on our rights and access to assistance in academic and workplace situations due to cancer side effects.  This is a big one for young adults.  Still, I think Your Brain After Chemo is a great read for any cancer patient.

Here’s my favorite practical tip of the book followed by a few of my own:

* Eliminate scrap paper, write everything down in one notebook instead.
* Use highlighters and take notes when reading anything.
* I call my cell phone and leave messages to myself on my voicemail.
* I use a vintage office mailbox set with 12 compartments next to my front door to sort stuff I normally lose: keys, important papers, plane tickets, my dog’s leash.

Have you ever talked to your doctor about your cancer brain fog?  What was their reaction?  What ways have you learned to cope?  What tricks do you use to help your life go more smoothly with a scattered brain?

If you experience cognitive deficits caused by cancer, they be covered in the workplace under the American’s With Disabilities Act.  To find out more, read Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.

Oh yes, I’ve had appointments where I had to restrain myself from smacking the doc.  Where I’ve had to act sweet and pretty just to get a moment of air time to ask questions about radiation treatment.  Where tears have sprung the moment they stepped out the door because I couldn’t dare be myself in the doc’s presence.  This is why I was floored when I asked him and he said ‘yes’.

I’m talking about my doctor R. Michael Tuttle, MD at Memorial Sloan-Kettering - he’s one of the top thyroid cancer docs in the country.  We’re appearing together this Sunday on a two-hour radio special all about thyroid cancer and young adults. Perfect match right?  I’m a thyroid cancer queen (nine years and counting baby!) and he’s a thyroid guru.   So why was I  floored when he said yes to doing the show?

I’ve had a slew of docs in my cancer career. Most have been top of their game. Their skills were unparalleled, they were leaders in research, and trend setters in their field.  But most wouldn’t answer my questions in their office, let alone answer radio callers on a Sunday afternoon. They were all about science but seemed to care less about my patient experience.

I was actually cool with this. I’m a super empowered person and compensated from elsewhere for what my docs wouldn’t give me.  I hire docs for their skills not their personalities.

But with Dr. Tuttle, I now see that a good doc-patient relationship goes beyond my 15 minutes of face time. I have greater peace of mind and less anxiety about my cancer in general because I get from Tuttle the information I need. I also know that when patients have better communication with our doctors we are able to better follow their instructions for taking medications and adhering to treatment plans.

If I have to go doc shopping in the future, I will still choose skills over personality and communication style. But for now, I’m damn glad that I get to have it all.

What are the qualities you look for in a doc?  Did one ever make you cry?  Would yours do a radio show with you?  Do you have any questions about thyroid cancer and young adults you would like us to answer on Sunday’s show - medical, emotional, or social life stuff?  If you miss the show you can listen to the podcast.

To learn more about how young adult cancer patients have handled their docs’ personalities, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

The notion of writing a letter to a body part of mine has always given me the heebie-jeebies. It reminds me of the scene in Fried Green Tomatoes when the gals crack out mirrors and befriend their coochies. Not up my alley.

But this request was different. It came from a fantastic website called Dear Thyroid, and there’s nothing cheesy or touchy feely about it: Two smart gals with thyroid disease toss out themes for reader rants that start with “Dear Thyroid.” Yesterday they posted my letter called Thycotic.

In my letter I asked my thyroid why after nine years people around me are still so curious about what caused my thyroid cancer. My suspicion is they want to know so that they can figure out how to not get what I’ve got. I wrote:

“If we truly understood the mechanisms that caused cancer, wouldn’t we be much closer to finding a cure? I’m not talking an RAI cure, I’m talking the kind of cure that makes you not get cancer in the first place. We are nowhere near there. Unexplained cases of thyroid cancer are skyrocketing (it is the fastest growing incident rate out of every kind of cancer in the United States.)

So my friends and family are going to have to shiver wondering if it will happen to them too. Because the truth is that it just might. Not cool news. But when you are facing nine years of thyroid cancer, the truth is less painful than sugarcoating. And I’m kinda learning to love life that way.”

I think from an epidemiological perspective it’s way important to study causes of cancer - environmental, genetic, and otherwise. But regarding what caused my individual case – it never really mattered to me. I’ve got what I’ve got. The question is what am I going to do with it?

Do you wonder what caused your cancer? Is it a curiosity, an obsession, have you done research? Do other people want to know what caused it? If your cancer is genetically based, what is it like to think about that?

For a great story about how Mary Ann handled her mom obsessing about the cause of Mary Ann’s lymphoma, read ‘It Girl’, Chapter 9 of my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Also tune in this week to The Group Room Radio.  I’ll be a guest along with Dr. R. Michael Tuttle of Memorial Sloan-Kettering Cancer Center, talking about thyroid cancer in young adults.  Call us on air with your questions.