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12.22.2011

A Twinge of Fear and Dash of Cinnamon: Thyroid Cancer Survival




V.




"If I had my life to live over, I would perhaps have more actual troubles but I'd have fewer imaginary ones." ~Don Herold

I'm feeling a little anxious about my cancer.

Just a twinge so far. Not anything full-fledged or paralyzing. But that typical end-of-the-year anxiety is now inextricable from my upcoming RAI scan, otherwise known as the Moment of Truth. It crept up on me one “how are you doing?” and “do you know anything yet?” at a time.

Honestly, things haven’t been that bad. Thyroid cancer has been more like a smack-you-in-the-face disease than a burn-your-house-down-with-no-insurance disease. I haven’t had to completely readjust my life or lose my hair or go through chemo. I take a pill every day. If I don’t, the worst consequence is extreme fatigue, which has the upside of reminding me to take another one.

Emotionally, it has been exhausting. And the first round of surgery and radiation was painful and terrifying. I certainly do not want to diminish the experience of thyroid cancer by joining those who stereotype it as the "easy" or "good" cancer. It is neither of those things.

My thyroidectomy scar has been fading quite nicely, thanks to Mederma and sunscreen, and my only complaint is that it itches occasionally. I actually am pretty bad about remembering to put on Mederma. I maybe apply it once every few days rather than three times a day as suggested. Those who are more disciplined in application may have even better results. Here is what my scar looks like today.




Two weeks before my next scan, I will go on the strict low-iodine diet. This diet actually introduced me to cooking, and contrary to my life-long belief that I cannot cook, it has proven a somewhat amusing and moderately easy task (maybe even a hobby if I’m being generous). Also, I have discovered that food tastes much better when you cook it yourself and I no longer crave fast food like before. I am by no means the epitome of health, but I definitely eat healthier (not quite sold on kale or beets yet).

The question still lingers though: Am I cancer-free?

Or perhaps more accurately, is my cancer under control? I don’t really feel like I can listen to what my body is telling me. I feel fine now, but I felt fine before the diagnosis. Tiredness, moodiness, and stress are more recognizable as symptoms of life than of cancer. When I was waiting to hear the results of my biopsy, I became paranoid about sore throats and neck pains. Is it still paranoia if the thing you are afraid of is real?

I can be having a perfectly nice day, completely free of cancer thoughts and suddenly it will hurt to swallow or my neck will feel strangely hollow (weird, I know) and I’ll think “Is that it? Is that the cancer??” Because what if I’m not fine? What if it is still there or has spread further or I have to undergo another operation? What if, what if, what if.

There is a scene in Pollyanna where the lovable hypochondriac curmudgeon Mrs. Snow makes one complaint too many about her “pills and bills” and Haley Mills snaps at her and says something along the lines of “A person shouldn’t think about dying all the time. You’re so busy dying, you don’t make any time for living!” Then she storms out.

It’s an age-old lesson no one likes to listen to. Worrying won’t change the outcome and won’t push my exam date closer. (In fact, I am going to have to wait an extra month if I want my test to be covered under insurance.) So I will just stay as busy as possible. I started my own company. I am designing multiple websites. One of my children’s books got a publication offer. And of course, it’s Christmas, so if I didn’t have the five-latte jitters and a crazed look in my eyes, I just wouldn’t be a part of the holiday spirit. (Seriously, stay away from shopping centers; it just isn’t worth it. Noah and I are living off canned goods until it blows over.)

Instead, I suggest you curl up with a cup of homemade no-iodine cocoa, a plate of low-iodine peanut-butter chocolate-chip cookies (recipe below), and watch some holiday classics with a loved one. What could be more normal and cancer-free than that?

My Top 10 Holiday Must-See Movies:

10. Home Alone (One of a very few films that I both loved as a kid and find enjoyable now.)
9. Rudolph, the Red-Nosed Reindeer (I will never truly grow up. These claymation films captivated me when I was five and captivate me still. How can you beat Hermey the Dentist Elf and the Misfit Toys?)
8. The Sword in the Stone (One of only two underappreciated Disney films (the other being The Emperor’s New Groove (not a Christmas film)).)
7. The Nightmare Before Christmas (Generally I am a fan of the classics, and the boogeyman in this really creeps me out, but it is a wonderfully weird twist on the whole wants-more-but-discovers-life-is-already great.
6. The Shop Around the Corner (I love all things James Stewart, and while this is not his best, it is a sweet love story that has inspired several contemporary remakes).
5. White Christmas (Is there anything more hilarious than Bing Crosby and Danny Kaye singing “Sisters?”)
4. The Family Man (Noah introduced me to this one. Another backwards Wonderful Life themed movie with a cute love story mixed in.)
3. Sleepless in Seattle (Christmas plays an even smaller role in this one, but it is the remake of An Affair to Remember and the Ryan-Hanks dynamic is almost as good as Grant-Kerr.
2. An Affair to Remember (Only the ending takes place at Christmas, but it is the best part. The Cary Grant-Deborah Kerr dynamic is unparalleled.)
1. It’s a Wonderful Life (Does anyone not watch this every year? I get chills every time that bell rings.)





A recipe for iodine-free cookies, slightly modified from the one in the THYCA cookbook (and seriously the best cookie I have ever tasted):

Mary's Oatmeal Peanut Butter Chocolate Chip Cookies

1/2 cup shortening
1 cup brown sugar
2 egg whites
1 teaspoon vanilla
½ tsp almond extract
½ cup natural peanut butter, plus extra for tops of cookies
1 cup flour (I use wheat)
1/2 teaspoon Kosher salt
1/2 teaspoon baking soda
2 tbs cinnamon
1¼ cup oats
½ cup raisins
½ cup semi-sweet chocolate chips (no milk product)
¼ cup chopped walnuts


1. Cream shortening and brown sugar. Add egg whites, almond extract and vanilla. Mix well.
2. In separate bowl, sift together flour, salt, cinnamon and baking soda. Add to
creamed mixture. Mix well.
3. Melt peanut butter in microwave until liquidy. Add to mixture.
4. Stir in rolled oats, chips, nuts, raisins.
5. Drop from spoonful onto cookie sheet and bake at 350 degrees F for 10-12 minutes or until edges of cookies start to brown.
6. When cookies have cooled, press spoonful of natural peanut butter on top of cookie. Warm in microwave for twenty seconds if cold.

MERRY CHRISTMAS!!!

12.05.2011

THYCA Cycling (Riding with Thyroid Cancer)

I am a THYCA Cycler.

Has a nice ring to it right? I have only been cycling once in the last two weeks and am a bit depressed about it. If you are in the DFW area, you have probably noticed that god is trying to make up for the drought this past summer by turning Texas into England. Gray everywhere. My mom would call this “Jane Eyre weather.” I’m leaning more towards Wuthering Heights.

When I did go cycling, I was motivated to ride faster than ever before by bitter wet winds, a terrible whooshing sound in my ears, and the pitch black skies of 5:30 p.m. You know the scene in "North by Northwest" where Cary Grant is driving drunk, at night, down windy roads next to sheer cliffs dropping off into the ocean, and all he can see is the blur of his headlights and the things he is about to hit? That is what it feels like when riding my bike at the lake after dark. The paths are narrow and windy and there are tall trees on either side blocking out all light sources except for my bike light, creating a kind of intoxicated, Blair-witch tunnel vision.

Needless to say, the weather of late has not been tempting enough for me to get back out there. Instead, I have been getting my exercise kicks from at-home yoga. Hulu now has all these free yoga channels like “Yoga Zone” and “Power Yoga,” which have seriously cheesy but effective workouts. I watch and follow on my laptop in the living room. If you are at all like me and cold weather makes you want to curl up in bed with cocoa and a book and never ever leave, you may want to check out these videos. They are mostly yoga-for-idiots style talkies, but the moves result in a good something-must-be-happening burn. According to the instructors, “Burn is strength.” Here is a good one:



Any THYCA cyclers in DFW?

Even though it is no longer bike-friendly weather, I am going to make another plug for cycling and invite anyone in the DFW area to join my currently one-and-a-half person THYCA Cycling team (one-and-a-half because my mom only rides with me every other week). Again, my idea is to start a cycling event in DFW that will raise money for THCYA research and awareness. I would like to eventually get on the level of sponsorship and participation that the current Tour de Cure enjoys.

I am by no means an expert cycler yet and would like to get to the point where I can do 60+ mile bike-a-thons without passing out. Most miles so far = 32. To motivate myself and begin my awareness campaign one person at a time, I have designed a THYCA Cycler shirt. You are welcome to steal my design and purchase your own if you are interested in being a THYCA cycler or just having a really awesome shirt. I ordered mine off of voler.com. Hopefully this link works: THYCA DESIGN



I understand that cycling is not for everyone, but it has been amazing post-op, post-cancer therapy for me. Just getting outdoors everyday and appreciating the beauty around me has made life better. I had a friend accuse me (unjustly) of “taking the fun out of cycling.” I guess she thinks I’m too competitive or something. She says she would rather enjoy the scenery. Which I do. Every single time I ride. Even those hard-core cyclists who go 40 mph probably look around them every once in a while. It is possible to both cycle (at a mere 12mph I might add) and enjoy your surroundings. To prove this, I took photos a few rides ago, when the fall colors were at their best. Here are some of my favorites; maybe they will inspire some would-be cyclists out there:
This is my favorite spot at the lake. I come here to write poetry and watch the egrets and cranes. At night nutria (also known as ROUS's) swim here.

Same spot captured through yellow flowers.

I had fun taking pictures from unusual angles. This is the dirt path to the shore.

This branch looks exactly like a moose head to me.

Spider webs are really hard to capture.

I love colorful grass. This reminds me of Van Gogh's wheat series.

Fun collection of branches near the shore.

One of many beautiful bike paths.

I love yellow trees. I pass under these while cycling.

This tree has flame-colored leaves.

I lay down in some rather uncomfortable thorns to get this shot. These plants are actually about a foot tall at most, but I tried to make them look like red trees towering above me. How'd I do?

11.19.2011

The Other Side: From Cancer Patient to Anxious Daughter

Entering the New Year with Cancer

Is anyone else looking forward to 2012? Normally I dread the end of another year for selfish but not atypical reasons: I’m that much older, I have not completed most of the last year’s resolutions, and I’ll have to come up with a whole new list of goals that will likely also go unaccomplished. A time to reassess life and sigh.

However, with 2011 being such a delight, I am, perhaps for the first time in my life, looking forward to the new year. I pray that this year was rock bottom. If it gets any worse, I’m going to crawl into bed and never leave.

Dad's Gallbladder Surgery

I am back again in the hospital I frequented during my cancer treatments, but this time my father is the patient. He came to the emergency room after a day of extreme abdominal pain and discovered he needed to have his gallbladder removed. I heard the news at three in the morning and had an absolutely wretched night of imagining the worst. In fact I was an absolute wreck until I saw him in the recovery room at 4:30 pm the next day. I’m not sure if my own family felt this way, but based on this experience, I feel sure that surgery is one of the most harrowing experiences, no matter what side of it you are on.

Even now my stomach is squirming. I’m not sure I’ll be able to relax until he is out of here. Have you ever noticed how small people look in a hospital bed? Maybe it’s because we don’t often stand over people who are lying down. My dad is not a small guy, but he looks tiny in a hospital bed. People look so fragile and innocent in sleep. It always makes me envision them as a small child, curled up in bed.

I haven’t been this nervous since my own surgery. The worst part was waiting in the private room before surgery. I kept feeling like I needed to say something important, like goodbye in some meaningful way, but I didn’t want to. I wanted to crack jokes and distract him, but I couldn’t think of any. I looked deep in the eyes of every nurse and surgeon who approached, trying to read how competent and compassionate they were and silently sending the message that my Dad is everything to me and if they hurt him I would hunt them down. The rest of the time I just prayed and bargained.

The waiting room is a little better, only because it feels more like a doctor’s office and you know everyone there is in the same boat. And there is more to distract you. I understand, but do not really like, the surgery number system. You watch a screen, looking for the number that correlates to your family member and it updates you periodically on their status. However, 1) it feels wrong to have your beloved reduced to a number, especially when they are so vulnerable and 2) it’s not like the updates are 100% accurate; they aren’t going to announce, “Oops we botched the surgery, he’s dead now” on a bulletin board.

I can see why Sartre envisioned Hell as a waiting room.

There are so many things about hospitals that I do not like and/or understand such as why the Starbucks closes at 3pm, why they do not keep enough staff members employed to perform scheduled operations, why it is as cold as a meat locker. Why do they have a television set in the hallway where no one can sit to watch it? And why is it always playing images of the ocean? Why is there gravel on the roof? Why is the produce here better than at the grocery store? Why cover pre-op patients in white sheets? It feels almost obscene, like a bad omen or preemptive measure. And again, what is WITH hospital gowns?

Update on Dad's Progress

I can’t wait to get out of here, but it looks like we are at the mercy of the anesthesiologists. While the first surgery was successful, he still has a gallstone stuck in a duct that will have to be removed endoscopically. There was a 3% chance of this happening. Remember how I said I don’t have the greatest luck with statistics? Apparently that applies to all in this family. There is a 1% chance that this second procedure will not be successful and he will need a third surgery, this time open (ie. more dangerous). Dad says he’s already counting on it.

Fortunately we have cynical humor on our side. Half the staff loves him because he keeps cracking corny jokes about how they’ve got the wrong man, and he needs to leave for a dental appointment but will be right back, and how the surgery doesn’t seem to have worked because he still has plenty of gall. The other half just rolls their eyes.

How many surgeons go into the operating room knowing that they hold not one life in their hands, but the lives of everyone who loves that patient?

11.03.2011

Can You Make Meaning of Madness?: The Why Cancer, Why Me Issue

“If the whole universe has no meaning, we would never have found out that it has no meaning; just as, if there was no light in the universe and therefore no creatures with eyes, we should never know it was dark.” –C.S.Lewis



The Madness of Cancer

Does anyone else feel the sudden intensified pressure to make meaning of their life? Or perhaps more accurately, to make their life meaningful? I have always wanted to make something of myself, but lately I feel a bit panicky about it. I don’t want to label it a “bucket list” mentality, because that would mean that on some level I suspect I might die (even with the odds against it), but that is what it feels like. Like my life “to do” list is not getting done and may never get done.

I’ve written before about needing to make sense of having a disease. Of needing it to fit within my “everything happens for a reason” comfort zone. Something like, what good is having cancer if you can’t make something of it? Does that sound as insane as it feels?

This need is part of the reason I have been returning to community service, which, regrettably, I have foregone since high school. My church hosts an Agape Meal every week and for about six weeks now I have been serving or table hosting. All the local poor and homeless are invited to come enjoy a sit-down family-style meal for an evening. It’s not exactly grueling labor, but it’s both difficult and rewarding for me because it takes me out of my comfort zone.

My mother and I lived in a homeless shelter when I was very young. I don’t remember the experience at all, but this knowledge has molded me as a constant “count your blessings” reminder. I cannot look at a homeless person without imagining myself in their place. A lot of people I know and love, my husband included, are “pull yourself up by your bootstraps” meritocracy types, but I have always known that I am just a few short steps or misfortunes from being back there.

Last week at the meal, I met a young man who had an eerily similar bad year to mine. In one year he was diagnosed with Hodgkin’s lymphoma, lost his health insurance, lost his job and had his bank accounts wiped out. He said that these misfortunes were “his story,” and that no good story is devoid of conflict. As every writer knows, conflicts are often the make or break of a good story. This man's conflicts led him to change his life, become a preacher, and share his story with everyone he meets.

In truth, his story is scarier than mine. But I’m still a tad bit jealous. After all, he got his meaning. His disease really did turn his life around. I am pretty much the exact same person I was before, doing a lot of the same things.

Before I went into the hospital for my surgery, I was half convinced I was going to die. (After you are diagnosed with cancer, pessimism starts to look more and more like pragmatism). So I vowed never to waste another moment of my life doing stupid trivial things like watching TV or reading Yahoo articles. But I still watch an unhealthy amount of TV and I read two completely useless Yahoo articles today, one on spouses who cheat (which ironically belied it’s thesis of “you shouldn’t” with five examples of women who are happier because they did), and one about how having a dog prepares you for having a baby (most if not all also apply to cats). Thank god I don’t have an iPhone.

Am I still wasting my life? Certainly large portions of it could be better spent. But I think if I tried to make every single moment count, I would go insane (or more insane). It’s just too much pressure to operate under. And many of my recent experiences have been meaningful, even if I haven’t quite yet figured out what the meaning is.

My experiences with the homeless have changed. I am used to seeing someone on a corner and feeling that instant combination of heartbreak, shame, and fear. I’ll give them money and feel guilty for not doing more or look straight ahead, ashamed because I cannot or should not be giving away money.

But now, it isn’t just seeing some guy on the corner. It’s Malcolm, whom I broke bread with not an hour before. Or Suzie, whose oldest boy (of five) just turned fourteen. I’m not at all sure that my volunteering for an hour has any lasting impact on their lives. But I’m hoping these little changes make an impact on mine. Then maybe one day I can say, “Yes, it was hard, but it made me a better person.”

10.19.2011

Love Your Body In Spite of Cancer

Today is Love Your Body Day.

I suspect this is not a nationally recognized holiday like the oh-so-important "Columbus Day," but it is certainly something to be celebrated. NOW has put together the Love Your Body Campaign as a way of counteracting the other 364 days of the year when women (not exclusively, but mostly) are told to hate their bodies.

I once had a very wise sociology professor, who very wisely told us, “If you ever want to hate yourself, buy a magazine.” This applies to any magazine, a special type of media (like commercials) designed to convince us that our life is incomplete in some way, e.g., My life is pretty good but would be so much better if I had a Swiffer vac/skinny jeans/beautiful red hair like the woman pictured here....

How can you love your body when you have cancer?

One day does not feel like nearly enough time to undo the damage inflicted for a quarter of a lifetime, but it is certainly better than nothing. I feel like this day/celebration/issue is especially important for women with cancer. Anytime you get bad news, you are going to seek out somebody to blame.

The first time I heard I had cancer, and was thereby “diseased,” I felt a tremendous sense of betrayal. By my body. I mean, after all, hadn’t I been taking care of this thing for the past twenty-seven years?? Sure, I didn’t take it on walks as often as I should and I sometimes made it ill with ice cream and candy splurges, but for the most part I was a “healthy” person. It didn’t seem right that I had been going around for who-knows-how-long with tumors growing inside of me.

Of course, it is hard (sometimes downright impossible) to separate one’s body from oneself, so this betrayal is really self-betrayal and then guilt, and ultimately—if you aren’t careful—self-loathing.

And even when the cancer (and thyroid) is removed, you have the thyroidectomy scar, the metabolism and weight issues, and the fact that you are literally incomplete. I don’t think about it often, because it is rather freaky, but I am missing an organ. An organ people need to survive.

Change your mindset by focusing on health.

But you can't look at it that way. It's not so much a matter of looking for silver linings or pretending you are above anger, envy and vanity. It's more about deciding that the cancer is not really a part of you, but something the strong healthy you will defeat and learn from. In one of my earlier blogs I talked about how embarrassed I felt about my thyroidectomy scar and the great lengths I was going to hiding it. While the collection of scarves I amassed during this early period of shame will surely serve me well in the upcoming cold front, I have not been wearing them for several months now. This is for several reasons: my scar is not nearly as gross looking as it was immediately post-op; I’m working freelance, so I don’t have anyone to impress (sorry hubby); and most importantly, I want people to know about this disease. If I can be a walking billboard for thyca awareness, so be it.

I think the most common body issue for women (possibly for men too) is weight. We are a culture obsessed with obtaining the ideal shape, one that is often impossible to achieve naturally (Read this fascinating article on one models anti-Barbie campaign). Since the thyroid regulates metabolism, achieving the ideal weight is that much harder for us thyca persons. I think I obsessed over this more than the scar. I KNOW I obsess over this far more than I ought to. The truth we are told over and over again (but love to ignore because there just has to be a shortcut) is that all we can do is eat healthy and exercise. And our bodies really do feel a million times better when we stick to this.

Find ways to love your body.

Since being diagnosed, I have fallen in love with bicycling. My friends would say a little too much. But a day when I ride is always better than a day when I do not. If biking is not your thing, find some other activity you love. For years I have tried to force myself to be a runner. My first stop at the gym was always the treadmill. But I hate running. So it never caught on. You have to find an exercise you love or you’ll never stick to it. I chose one that takes me outdoors and is free (I love yoga too, but *ouch* on the wallet).

NOW has a bunch of other suggestions for celebrating today (and if you are reading this at 9pm, just make Love Your Body day tomorrow or next week, or better yet, every day!): WAYS TO LOVE YOUR BODY!

I’m not so sure about the mock beauty pageant or indulgence party (although I just indulged in a Salted Caramel Mocha—YUM!), but there are lots of great ideas on this site. You might just want to spend a little time telling a friend or loved one how awesome they look (even without the makeup). Every time I see or talk to my mom, she greets me with “Hi Beautiful!” How amazing is that? Even though she is my mom, it makes me feel like a million bucks.

Today I am treating myself to a delicious coffee drink, two bike rides, and as soon as I see my mom, I am going to tell her how fabulous she looks (she really does). How will you treat yourself today?

This post is part of the 2011 Love Your Body Day Blog Carnival" linking to: http://www.now.org/news/blogs/index.php/sayit/2011/10/19/lybd-blog-carnival-posts/

10.12.2011

50/50 Film Review: Cancer in the Movies

Going to a cancer movie when you have cancer is a strange experience.

I went to the movies the first time in a long time the other night with a friend. Not having a TV, I never know what is out, so I had to watch some trailers on imdb.com. I was a little wary of seeing a “cancer” movie, since most of them are about the process of dying and how much it sucks for all the people they are leaving behind. Like the only person who can make peace with death is the one who is dying. I am definitely not there. I am more a “rage, rage, against the dying of the light” kind of person.

Also, you may have noted in my previous blog that the last time I was at the movie theater, I ended up sobbing in the parking lot after discovering that my cancer had spread. If this movie did end up being a tearjerker, I might get a reputation as crazy-weeping lady. Or worse, end up on YouTube.

But I was intrigued by the cast combo of the kid from “Third Rock” (Joseph Gordon-Levitt) and the guy from “Knocked Up” (Seth Rogen). Also, unlike most cancer movies (this seems like an actual genre of film now—a frightening media trend indicative of just how universal this disease is), it is from the perspective of the person who has cancer.

This ended up being a truly worthwhile film, with an excellent balance of goofy and heartbreak. It is one of the paradoxes of disease: you have to have a sense of humor to get through it and yet you want people to recognize that it is both shitty and significant, without pitying you.

The audience is given as close a perspective of the protagonist, Adam, as possible without narrative voice-over. Adam himself is a kind of everyman; simultaneously likeable and disappointing (you want to push him to do better). The way that he experiences cancer is pretty accurate in terms of emotions and events. The only aspect of his treatment that I did not fully identify with was his reaction to drugs: morphine gave me a headache and thyroid cancer does not merit prescription marijuana.

Of course there are subplots intertwined with his cancer diagnosis: two romantic entanglements and a complicated family dynamic. The romances led to many comic moments and the family relationships were both heartbreaking and heartwarming. The film highlighted the silver lining of a new perspective gained. Perhaps this is not so with everyone, but family has become a much bigger priority in my life since my diagnosis. My feelings have not changed, but my willingness to act on them has.

Adam’s relationship with his best friend is also quite endearing. It illustrates the difficult balance friends must maintain between easing fears (jokes) and showing care. Sometimes you want to smack Rogen’s character, but even before his most poignant scenes you understand that his inappropriateness is attempted compensation for not having a clue how to deal with this situation.

Once the film ended my friend turned to me, tears in eyes, and hugged me, saying “I have been such a crappy friend.” I was rather surprised (and more than a little embarrassed since the people squeezing past us were staring) that she felt this way. There weren’t any characters in the movie that I would characterize as “exemplary” in their encounters with cancer, although Anna Kendrick’s character comes close. Maybe my friend saw a little of herself in the Seth Rogen character because she has not really dealt with the whole cancer thing directly (ie. talking about it). But she has been a friend throughout. Exactly as she was before. And as the movie points out, when your life is thrown into a funk, you crave normalcy. The only bad friends are the ones who abandon you (there are examples of this too).

I also did not escape this film with dry eyes. There are plenty of sad moments, and I think my original suspicions were right in that I felt a lot of the scenes more intensely than I would have had I not gone through it myself. The pre-surgery scenes are especially difficult. However, this is not one of those movies that psychologically beat the crap out of you (what I like to refer to as “Lonesome Dove Literature”). It has an uplifting, move-on-with-life ending without getting overly sappy or preachy. It illustrates that ultimately, there are no capital-A Answers, no certainties in this life. Each of us is left wondering and hoping, “What next?”

9.16.2011

The Limbo of Living with a Cancer Diagnosis



You Can't Pretend You Don't Have Cancer.

I have not blogged in quite a while. Not only has the chaos of life gotten in my way, but sadly, there is nothing new to tell. What the made-for-TV Hallmark movies and Grey’s Anatomy do not tell you about cancer is that it involves a lot of waiting.

After the RAI scan, it is a 6 month wait until you find out your cancer status. So I will not know whether I am “cancer free” or not until January. But as I already mentioned, there really is no way to become cancer free. It is always there in the back of your mind. I’m often completely absorbed in some other activity and then some “Stand Up to Cancer” commercial comes on or I spot a ribbon on someone’s car or someone asks me “How are you feeling?” instead of “How are you doing? and BAM! I’m brought back into a world where I am sick and people feel bad for me.

I’m sure other THYCA people or even people experiencing other cancers have these normality-sucking moments. I’m sure a lot of them also react to these moments by distracting themselves or changing the subject right away. I am definitely guilty of trying to hide from this disease or pretend it hasn’t happened or live my life “normally,” and many people will say this is healthy. But it isn’t right. It’s the exact same reality void that kept people in my family from telling me that getting this disease was a possibility.

I read an article today that said that U.S. THYCA diagnoses are up this year by 3,350 or almost 7.5% for a total of 48, 020 diagnoses and 1740 deaths. Here’s where I climb a tall horse and deliver a small sermon—again. 1740 is not a small number. Thyroid cancer is a big deal. If it is not caught early on death is a possibility, even a likelihood. I am not a fan of hierarchies, and this is no exception. September is supposed to be THYCA Awareness Month, but there are no events in the DFW area, a major metroplex.

Can You Make Meaning of Cancer?

A month ago I participated in the American Diabetes Association Tour de Cure and it was amazing! The Dallas Tour de Cure event raised more than a quarter of a million dollars and the events nationwide raised $18 million. I’m not going to play the “which is the more serious disease” game. Living with any disease sucks. All illnesses should have the funding for progressive research and awareness. So where is our bike ride? Marathon? Gathering of more than two people??

All I have found so far is the “Ten Tips” list on the Thyca site and a bunch of links for “free” flyers. So at this point my options seem to be limited to grabbing my mom and a few friends and harassing people at malls and college campuses with the flyers we printed at our own expense. Is this really the best we can do??

I’m sure it took a lot of years to get the Tour de Cure to where it is now, so really we just need some kind of starting point. I guess I need to do some more research on this, since my fundraising experience is limited to Girl Scout cookies and yearbooks. If anyone is interested in starting a fundraising event in the DFW area or if anyone has started events similar to this and has advice, please contact me!

If you have gotten through the horrors of the surgery and hypothyroidism and the scan, you may be tempted to return to the life you knew before. There is no point in dwelling on something you have no control over. No one’s life should be defined by an illness. But I know I am not alone in feeling that something more should come from this experience. That at the very least, my affliction should benefit someone else. That there should be some purpose to all of this. Something a bit more substantial than flyers and Facebook updates.

The Miracle of Synthroid.

Now that I am on Synthroid, I feel fine. The only place I feel different physically is my neck/throat area. My voice is a bit different. I don’t have the vocal range I used to and sometimes my tone or pronunciation comes out in a way I did not intend, like a poor sight-reading. I have sore throats that don’t appear to be connected to any other illness like a cold or flu. And every once in a while that strange choking sensation comes back and I have to convince myself I am still breathing. It simply feels like my trachea is contracting, but it is not painful, rarely happens, and goes away quickly. Another person with Thyca described it accurately as “an uncomfortable pull.”

Remembering to take the pill is easier than I thought it would be, and I am quite forgetful. Usually if I do not take it, I remember in a few hours once I start wondering why I feel so tired.

A tip for taking Synthroid: The bottle says to take in the morning and not eat for half an hour. If you are like me and do not like to skip breakfast and have to run out the door in the mornings, you might want to switch to taking it at night. The consumption of food, especially milk, orange juice or anything with calcium will block your body’s absorption of Synthroid. If you take calcium pills or a multivitamin, take it at a different time.

Other than taking these pills, the only cancer-related activity I am involved in is waiting. But I hope, with some help, to find better ways to raise awareness. Please help by telling everyone you know to “check your neck!”

8.06.2011

The RAI Scan: Radioactive Iodine for Thyroid Cancer


The RAI Scan was Not What I Expected.

This is the one process I have been through that I didn’t research prior to experiencing it. For some reason, perhaps related to the sludgification of my TSH-deprived brains, I decided this scan would be like all the other x-rays I’d had of late. I would wrap heavy aprons around my abdomen and be asked to twirl a few times. Nope. The RAI scanning machine or “gamma cam,” looks and operates like an MRI machine. A whole-body immersed in a small white tunnel kind of machine. This can be a bit intimidating, especially if you are claustrophobic (I don’t think I am, but I have always been wary of tanning beds and I did panic a little that time I got stuck in a tiny dressing room with a too-small dress pinning my arms to my face).


What the RAI Scan procedure is like.

I arrived at the hospital in a “work out” outfit as requested. You are not supposed to wear anything metal (normal bra straps/hooks do not count; I asked). I waited while they “warmed up” the camera and drank the bottle of water that one very confused or mischievous tech told me to drink before my exam. Since the test requires absolute stillness for about an hour, drinking a full bottle of water beforehand is not the smartest idea.

I was then escorted into a large room with an automatic sliding wall (awesome) by a different tech who asked me if I needed to use the restroom. When I held out the empty water bottle and explained that I had finished it as instructed, he responded “they shouldn’t have done that” quite sternly, and began to watch me as if I were a trembling puppy sitting on his million dollar piece of equipment.

The room was completely empty except for this large, white, coffin of a machine. I placed my purse on a chair and laid down on the bottom half of the machine. A pillow was placed beneath my neck and shoulders so that my neck would project as far upward as possible (not terribly comfy). The lower half of the machine (much like an exam table) slid back inside the tunnel and raised me until the top half of the machine was approximately an inch from my face. I was then asked to lie perfectly still for 45-60 minutes while the machine moved me in small, extremely slow increments and took pictures of me.

That is what physically happened to me. What psychologically/emotionally/spiritually happened to me is a stranger story. Even though I can ride in elevators and smart cars without breaking out in a cold sweat, I am not a huge fan of staring at a wall one inch from my face. So three seconds into the procedure, I closed my eyes. Since I was going to be there a while and needed to keep myself from fidgeting, I began to count. This is usually very therapeutic for me in scary situations, but I was feeling increasingly alone and sorry for myself. So I began to pray; again, something therapeutic that helps me get through anxiety-provoking situations when otherwise helpless.

I have been to yoga classes and camps where they ask you to meditate. They would warn us that we might cry at the end of a session, that it was perfectly normal to do so, and I would think “Because we are in a room full of mirrors?” I think it is this focus on external self that has kept me from successful meditation. I was always far too focused on how I looked in yoga pants or what the people near me were thinking or doing to ever really connect with myself on a spiritual level or to silence the incessant “to-do list” dialogue in my brain. 

At some point in the gamma cam I allowed my mind to wander and, inevitably, it walked straight up to the image of me lying in a coffin and tapped it on the shoulder. I started thinking about death and funerals and out-of-body experiences. Not comforting. Rather than dwell on my own demise, I went to my memories of my grandfather’s recent wake, the first time I’ve seen the body of somebody I loved. I remembered how outraged I felt when I saw him. How I kept glancing at the body out of the corner of my eye, refusing to look at it directly, feeling lied to, betrayed. How I kept thinking, “That is NOT my grandfather,” and hating everyone in the room for pretending it was.

And this is where I ask you to suspend disbelief: I started having a conversation with my dead grandfather inside the gamma cam. I’m not claiming any kind of medium abilities and I can’t really say it was my grandfather. It was more like, in a moment of complete stillness and silence, my mind was able to piece together all the things my grandfather used to say to me when he was alive, and constructed a new conversation out of it. It was as if I knew exactly what he would have said to me had he actually been there. How he would have comforted me, what his hands would look like wrapped around mine, the tone of his voice when he'd say "Oh sweetie, you're going to be just fine." It was one of the most real and spiritual moments I have experienced.

An hour is a long time to be awake, silent and motionless. I won’t lie and say it was pleasant. Physically, the discomfort is minimal. Emotionally and psychologically, I was in tears by the end of the session. I had a very hard time hiding these tears when the nurse turned off the machine and escorted me into the hall. Either she was used to emotional patients or thought I was a nut; she never said a word. But as sad as I was and am about my grandfather, I also feel cleansed by our conversation. Like some of the “why me” bitterness of this whole cancer experience was washed away. Life sometimes sends lovely reminders that we can never be completely alone.

I still don’t think of myself as someone with cancer. I know this because when the RAI doctor was leading me to the room and reading my chart, he said, “So, Ms. Noon you are here because you have thyroid cancer,” and my instant thought was “I am?” A shock runs through me sometimes, when I hear this term linked with my name, my identity. It is like a stranger calling me a bad name. I feel offended and I want an apology. It must be a mistake. This kind of instant vulnerability makes me angry with the universe sometimes. But then I think of all the other people affected by cancer. How vulnerable they are. And the vulnerability becomes something human again. It gives us something to both struggle against and accept.

I must accept that I have cancer.

I must not allow it to have me.

7.27.2011

More on the Good and Bad of Treatments for Thyroid Cancer

 The First Two Days After Receiving Radioactive Iodine Treatment.

Are kind of a blur. The only real distinction between them was that each day brought a new privilege. On day 1, I was allowed to begin my Synthroid dose. Nothing happens right away of course, but after such a lengthy anticipation, simply taking the pill was a kind of communion. I wouldn’t have been surprised if moonbeams had shot out of my fingers and toes. (They didn't.)

Mostly I spent these days sleeping or trying to sleep. I was in quite a bit of pain, but I think it was related more to a stomach virus than the RAI. The list of side effects for radiation suggested mild stomach issues and rarely nausea. My stomach churned, my intestines did the mambo, I vomited twice, and my urine (in the interest of total disclosure) "burned" in the sense that it gave off a lot of heat (it did not hurt, but made me feel even more like an alien). So if you are thinking a few days of isolation are going to be like a mini-vacation or will be a fantastic opportunity to catch up on that ever-growing to-do list, think again. It is, however, a great chance to get in all those naps you’ll be missing when life returns to normal.


Losing Your Taste Buds After RAI. 

Day 1 is also lemon candy day*. Although the studies done on the effects of lemon candies seem inconclusive at best, many doctors (including mine) recommend you suck on lemon candies to save your salivary glands from excess radiation damage. I recommend them for another reason. Save yourself from your taste buds!

The worst side effect of by far is a horrible mutant after taste left by the RAI. I had read many personal testimonies regarding the side effects of RAI, several of which mentioned the loss of taste buds for 1-2 months. A loss of taste buds would have been a godsend. I hate to once again be the bearer of bad news, but radiation has a taste and it tastes like death. Neon green death. (I know the color of the taste because I was one of those “rare” people who puked.) More specifically, my mouth was suddenly and strongly filled with the metal-and-salt taste of blood. Hardly Hallmark movie material, but not exactly pleasant. And unless you are really into the whole vampire culture, not likely to make food or drink of any sort appetizing.

This also affects day 2 and its privilege: getting to the end of  the low-iodine diet. I have spent quite a few hours during that diet dreaming of the foods I was going to indulge in as soon as I could eat regularly. My first meal was going to be something low-calorie and nutritional, like fried chicken and ice cream. Unfortunately, after radiation, food of any kind seemed adversarial, and I subsisted mostly off of lemon candies and water.

*I started eating those little lemon candies as soon as I woke up on day 1 and ate hardly anything else the next two days. I recommend eating Lemonhead candies, because they are small and round and less harsh on gums than the Brach’s brand. Also, the outer coating of sweetness helps prep what buds are left for the bitter lemon taste. Between these two flavors (lemon and blood), I ended up experiencing a very strong aversion to anything salty during these first few days; I’m sure this has something to do with the iodine.

Resuming Human Contact, Post-RAI.

However, the night of day 2 also meant that I could finally be within 3 feet of another person. If you are not familiar with RAI contact restrictions, they are basically 2 days of complete isolation from humanity, 6 days of freaking out if anyone comes within your imaginary 3 foot personal bubble, 12 days of running away from children and pregnant women, and the vague promise that one day, with thyrogen, you will be allowed to rejoin humanity (but only until your next RAI scan).

If you are an RAI alien, you may be wondering:
• Who came up with these restrictions?
• How completely arbitrary are these restrictions?
• If the radiation is only secreted in bodily fluids, why is it dangerous to sit in cars with people or get closer than three feet to them?
• Is it safe to dance, oh is it safe to dance?

Let me know if you figure out the answer to any of these. Back to Day 2….

My husband agreed to meet me at the duck pond on the conditions that I shower and change clothes (he’s really quite a lovely person). I agreed to meet him on the condition that he bring me a loaf of warm French bread, the one food luxury I felt my stomach could stomach.

After two days of no human contact, I finally had a date, although it was truly the strangest date I have ever been on. I was as excited about seeing my husband as I had been on our wedding day. At the park, I found a bench away from most people and parked myself on the edge of it, trying not to touch it with my mutant skin.

As I waited I became rather conscious of how strange and awkward I must look: a woman alone at a duck park, not feeding or reading or drawing, but sitting perfectly upright, craning her neck around, and occasionally shooing the ducks away as if afraid of them. I was also becoming really anxious about the limited amount of time I would have to interact with my husband, given that it was getting dark and I was not allowed to use public facilities. When he finally arrived (an excruciating fifteen minutes later), I almost forgot the rules and ran into his arms. Instead, we had to wave hello and sit on opposite ends of the bench. He fed the ducks with some of the loaf from his end, while I snacked on some of it from my end.

I’m not sure what people might have thought in looking at us. Overly conspicuous spy meeting? Exchange of divorce papers? Most awkward first date ever? I am, however, pretty sure that we might have unwittingly scared the wits out of a young boy (maybe 9 or 10) who wandered a bit too close to our bench. He rather innocently planted himself on the shore directly in front of us to feed the ducks. Unfortunately, ducks are somewhat indiscriminate about which humans feed them and whether those humans are radioactive. A drove of them came too close to me, leading to the following very strange conversation, overhead by aforementioned little boy:

ME: Noah, the ducks are coming closer.
NOAH: Yeah, I see them.
ME: Noah, they are getting too close. Get them away from me!
NOAH: (Trying to lure the ducks by tossing bread near his side of the bench.) I’m trying.
ME: Noah, I might hurt them. Get them away before I hurt them!
NOAH: (Now shooing the confused ducks away.) I’m trying!
ME: (Screeching.) Oh no! Baby ducks! Save the baby ducks!! Get them away from me!!

Shortly after this, the little boy left. Now, maybe he was a very intelligent little boy who thought to himself, ah that lady is undergoing RAI therapy and has a 3 foot boundary to maintain when in contact with other creatures such as adorable baby ducks. Otherwise he may have left under the mistaken impression that I am some kind of psychotic who experiences uncontrollable homicidal urges when around ducks.

Your guess is as good as mine.

7.21.2011

Radioactive Iodine Therapy: Day Zero

What it is like to undergo Radioactive Iodine Therapy.

RAI and the isolation period are difficult times, but to what extent probably depends on your home and family situation. I live with my husband and two cats in a small apartment with one bed. This meant that both my husband and my cats had to leave for 6 days (separate bed minimum regulation). Yes, technically, he could have slept on the couch. Yes, the doctors tried to convince me that having cats is not the same thing as having small children and that the risk to them was significantly less. But neither of these things would have been very good for my peace of mind or household. Our couch sags in all the most inconvenient places, making even naps a semi-hazardous ordeal. Also, I do not trust the perspective of doctors on pet health. I’m not going to carry my cats around in a handbag or push them through the park in a stroller or dress them in tiny outfits, but they are members of my family and I’m not going to risk their thyroid health on any statement containing the word “probably.”

So point fingers where you will, I was completely alone during my ablation. When I was reading about others’ experiences with isolation, I was tempted by the idea of staying in a motel for a couple of days. However, some very wise people pointed out that this could endanger the housekeepers, especially the pregnant ones. As careful as you want to be and promise to be, it is hard to be vigilant about everything you are touching and every body fluid you secrete. A sneeze becomes something to fear; getting on an elevator becomes an ethical decision. Have you ever tried wearing rubber gloves for 24 hours? They become uncomfortable and inconvenient after a few minutes. So it is best to accept that you are not going to be as pristine or vigilant as you could hope for even in perfect health, and to follow the regulations as closely as possible.

RAI Day 0*: Infection


Sound like the title of an apocalyptic film? While the overall experience was not quite as sci-fi as I anticipated (no hazmat suits), I think this is as close as I’ll ever get to understanding what it would be like to be an untouchable. My perspective on self changed radically, unwillingly, and in a matter of minutes. I could not help but see myself as toxic, infected, dangerous. I had to keep reminding myself that it was only temporary.

The morning of ablation (process of receiving RAI), I was nervous, but ready for the whole thing to be over with. In the extreme stages of hypothyroidism, devoid of energy and desire, my body started to feel like a prison. I was simply waiting for the next step and the promised miracle drugs that would follow. There was also some confusion with the hospital staff that made me a little more impatient during the last stretch of waiting (I was initially promised a treatment on a holiday when no one was working).

In my hurry, I dressed for the outside weather (100’s) and not hospital temp (about -20 in hypo degrees). Hospitals are not terribly speedy or efficient. Dress warmly! I wore shorts, a t-shirt, and sandals and was shaking so visibly that they offered me a blanket. I would recommend long pants and close-toed shoes as minimum precautions. Most of the appointment felt very usual. Like usual, I got lost. Like usual, I went through patient registration. Like usual, I got lost again. They really ought to consider some kind of hospital escort service. Like usual, some kind staff member eventually led me to the right place. Like usual, I sat in a waiting room, reading, for about an hour.

Then a nice, young, very nervous-seeming doctor led me to an area. The area consisted of a door, a chair and a table and became a kind of room when he pulled a screen like a half-moon around us. For the next half-an-hour I sat reading in my new “private” waiting room, while he occasionally popped in and out of the door to ask me questions or hand me paperwork. He was quite thoughtful, constantly asking if I needed anything (including, thankfully, the blanket), but everything he said sounded like an apology. His words tripped over each other and his eyes slipped from ceiling to floor and back again. I wondered if he was socially awkward or just felt really sorry for me.

Eventually another older, habituated doctor came along to tell me matter-of-factly everything I had already read online about RAI treatments and precautions. Once I signed my life away (again), the nervous doctor led me to a room with a large yellow and red caution, radiation sign on it. The room itself looked like a storage closet. It was long and narrow, with some tables and junk piled at the back. At the front of the room, near the door, was a table with two bottles of water, three Oprah magazines, a telephone and a television on it. The doctor invited me to sit at this table while he retrieved the pills.

I very much expected a HAZMAT suit, but the only noticeable difference in his appearance when he returned was a pair of large rubber gloves. He was also carrying a heavy lead box, gray in color, which he set on the table in front of me. He then explained that one of the seemingly discarded “tables” in the room was actually a radiation screen. At this point, there was a kind of stooge-like miscommunication about who was to stand behind the screen. I confused him right out of his ability to speak by getting up and standing where he pointed. He explained to me that I was in his spot. We switched places and I opened the box. Inside were two plastic tubes, and inside these were three clear capsules filled with gray powder. I took the three pills with the water, closed the box and was told to wait another half-hour so they could monitor my reactions. During this time, nothing more exciting happened than the phone ringing. It rang four separate times, one ring each time, and I’m still a bit confused as to whether I was supposed to answer it or not (they had not warned me to anticipate calls).

Then I was released. No fanfare. No troops. No persons in HAZMAT suits escorting me to my car. And honestly, I didn’t feel any different. Chilled to the bone, but not different. I could feel the ice water sloshing around inside of me and the goosebumps pricking my skin, but physically, I did not feel radioactive.

Psychologically, I felt like a freak. I guess the lack of precautions should have clued me in that I was safe, at least for the ride home. But they ask you to drive yourself so you don’t endanger anyone else. How could I be sure that bumping into a small child in the lobby might not damage it? That years down the road, that kid wouldn’t have thyroid cancer because of me? And so suddenly, they were everywhere. Moms with strollers, kids with extended fingers, to-be moms with extended bellies. All too close. All unaware that I was a ticking toxic time-bomb whose sweat and saliva were like so many guns pointed at their children.


I must have been quite a sight, dodging and weaving, trying to stay three feet from everyone I passed. I even refused to take the first two elevators that came, because there were kids on both of them. I felt like a murderess simply handing my parking ticket and money to the garage toll collector. My husband has since informed me that it is unlikely the radiation could have absorbed into my bloodstream yet. That it was unlikely I could have harmed anyone. But still. In my mind, I was infected.

Not a lot changed over the course of that first day. I was told not to eat until 5pm, and having not been allowed to eat the rest of the day, my stomach was my biggest concern for the first few hours at home. After eating I was in and out of sleep, like usual. At most I might be able to say there was some tingling sensation, like when a limb falls asleep. But that could be the calcium deficiency.

In reality, most of the drama of the day had occurred in my head. Not sure what to recommend for that....

*According to my husband, a math guy, starting at Day 0 makes sense. Somehow it makes counting easier. So on Day 3 patients can be in the same room as others and that is better than them assuming that their 3 day no-people rule ends on the third day. Idk. To me it feels more like one of those 3 Stooges scenes where they say they are going to do something on the count of three but can't get it right. "Wait, on three or after three?"

Light and Shadow: The Good and Bad of Cancer Treatments


7.17.11

I am beginning to resurface from hypothyroidism. 

Today I am in love with the world. I would like to say that this is for some lofty spiritual reason, but I have promised to be completely honest here. The real reason is rather material: I woke up PAIN FREE!

Oh, the glory of FEELING healthy! Even for a moment! I think I could tap dance down the street if someone asked it of me (and I haven’t taken lessons since I was five). This simple absence of pain is as dear and real to me as the ecstasy of falling in love. The chirping birds outside my window are no less sonorous than a choir of angels, the sunlight that I have blocked out so tightly is now the fountain of youth, and even this apartment fills my heart with champagne bubbles. I am alive. I am pain-free. I can do anything.

Let me explain. This is actually Day 4 of my confinement and the RAI treatment. It is the first day I have felt like doing anything more than curling into a ball and willing myself to sleep and/or expire. I pray that this is not the case for everyone who goes through this. The truth is hypothyroidism sucks. It turns you into a cranky vampire. Going without any thyroid for six weeks is horrible and painful and life-draining. But in the long run it is only six weeks. During the last few days of my ablation. I have  had the added misfortune of experiencing the negative side effects of radiation that doctors claim to be "rare." I really hate that word. I am always in that 1-10%. Blech.

Before I discuss the hardships of RAI (darkness), I would like to share some light. There is a reason these are the most basic and universal of symbols, at the heart of many religions and attempts at understanding human nature. Light and shadow cannot exist one without the other. But they are not as simplistic as good and evil. They are both indispensable. And while most of us prefer light and would rather never have to face the shadows, it is precisely those moments of darkness that make us truly appreciate and delight in the day. I would have no reason to find such joy in my current state, had I not been in pain for the past four days. The removal of pain is a far more beautiful and recognizable blessing than if it had never been there.

Have you ever noticed how a simple glass of ice water can be liquid ambrosia after a long hot day of exercise? Or how a warm bath can feel almost spiritual after a day in the snow? I am not arguing that one’s life will have more meaning and verve if one seeks pain and conflict. Just that when you inevitably find yourself in a seemingly unending tunnel, imagining how wonderful it will be to drink in the light can help you get to the end of it.

When you have Cancer, there is nothing so wonderful as support from loved ones.

On that note, I would like to share some of the beautiful gifts that others have shared with me.
Here is the sign my friend Meredith made for me, my initials spelled out in thyca ribbon:



The beautiful roses my husband brought home on our one-year anniversary (other people have sent me equally beautiful flowers, most of which are still alive, but a bit camera-shy):




Gifts from a friend and roommate I lost touch with five years ago:




A prayer shawl knitted for me and notes of love and cheer from my church:




The huge stack of books and movies my parents gave me to get through isolation:




My first bottle of Synthroid!!!!




My neck scar, healing nicely (about 5 wks post-op):




“There's no disaster that can't become a blessing, and no blessing that can't become a disaster.” –Richard Bach

But it’s best to focus on the blessings.

7.15.2011

What It Means to Be HYPO: Signs and Symptoms of Hypothyroidism

What is hypothyroidism?

This was a question I had from day one of my diagnosis, when terms like hypo, hyper, TSH and RAI were introduced like catch phrases. When your entire physiology is about to change, a Wikipedia definition or list of symptoms proves deficient. Read too many forum fears and complaints and you might start to feel a bit like blind Gloucester.

I will try to describe, thoroughly, how I have experienced hypothyroidism. I was hypothyroidic for a long time before my cancer diagnosis and had no idea I had a thyroid problem. I had Hashimoto's Disease, the most common cause of hypothyroidism in the U.S. for so long that my thryoid had been ravaged by it prior to my thyroidectomy. I had years of fatigue, weight gain, mood swings, sensitivity to cold, muscle aches, depression, etc. I chalked it up to life for a long time. When I finally did seek help from a doctor, six months prior to my cancer diagnosis, I went because my mother begged me to. She said thyroid problems were common in our family and I should get tested. Well, I did, and my test was negative! Six months before they found a 3cm tumor in my neck. Even if your test comes back clean, you may STILL have a thyroid problem.

Remember the beloved Shel Silverstein poem “Sick”? I recited it in third grade. A gash, rash and purple bumps? All the basics of hypothyroidism. It’s like getting beat up by God. Okay, I might be exaggerating slightly, but I’m extremely hypo right now and feeling a tiny bit sorry for myself.

A freakish number of people do not even know what their thyroid is until they are diagnosed with a condition. I had heard about "thyroid problems" because they run in my family, but had no idea what a thyroid was, where it was located or what it did. To the right is a picture of the thyroid. It looks like a shiny pink butterfly wrapped around your trachea.

The thyroid is an endocrine gland (a gland that produces hormones and releases them in the bloodstream) that controls just about everything. It controls your body's ability to use energy, make proteins, and react with other hormones. When your thyroid is messed up, it is a big deal.

In simple terms, hypothyroidism is an extremely common thyroid condition in which your thyroid does not make enough thyroid hormone for your body to function normally. It affects 2-6% of women and .2-2.5% of men (the % increases with age). While the definition of hypothyroidism is simple, its symptoms are not. The reason I compare this illness with the "Sick" poem is because the list of symptoms is as unending as the little girl's attempt to get out of school. The symptoms of hypothyroidism are many, vague, and common. Because of this, it is often dismissed, by doctors and society.

Hypothyroidism is real. Recognize the symptoms.

One of the biggest problems with thyca awareness is the lack of drama surrounding it. We do not go bald or turn colors or forget who we are. And our society loves drama. Have you ever seen a movie or TV show in which a character had a thyroid problem or was diagnosed with thyroid cancer? Probably not. It just can't hold a candle to  breast cancer, lung cancer, heart attacks, Alzheimer's. Don't get me wrong. I am extremely grateful that I do not have these conditions and do not have to face the horrific treatments and symptoms they come with. But thyroid conditions are no less deserving of awareness and treatment.

The symptoms of hypothyroidism sound a lot like the symptoms of life. No one thinks to themselves, “I put on five pounds; I wonder if I have cancer,” or “Man I need a nap; must be my tumor coming back,” or “I probably shouldn’t have yelled at my husband like that; maybe I should get my thyroid checked.”So people ignore them. Doctors ignore them. Patients try new diets or longer nap times or anti-depression medications. And when they don't get better, we blame THEM.

America (or American meritocracy or U.S. patriarchs) decided long ago that everything good depends on PRODUCTIVITY and EFFICIENCY and everything bad stems from being FAT and LAZY. So while we all have a good laugh at Homer Simpson, we certainly don’t want to be him. Then we would be laughed at. So we ignore the extra pounds, the tiredness, the sore throats, the muscle aches, the mood swings and chalk it all up to not being all we could be. But at what point were we supposed to stop and say, “Wait, something is wrong here. It’s not just me, something is wrong with my health”?

I don't know. No one does. Which is part of the problem. Our best step towards diagnosis and treatment is patient awareness. If people know these problems exist, know their family history, and know when their body is acting strangely, they are more likely to seek help. 

Even on a lot of thyca support group sites, there seems to be a very fine line drawn between advising people on how to deal with the symptoms and warning them against “blaming it all” on the thyroid. While I do not think the disease or surgery should be a “Get Out of Judgment Free” card, these symptoms are very real, very hard to deal with, and definitely deserving of consideration.

So if you are popping out at parties or feeling unpoopular or know someone who is, this is for you...




The Symptoms of Hypothyroidism

(Please keep in mind I have no medical expertise. These are the symptoms as I understand and experience them.)

MIND LEAPING

On several websites this is described as “memory loss,” forgetfulness,” “depression,” “irritability,” “difficulty concentrating,” etc. I feel like my term, “mind leaping” encompasses all these things. It is not so much that you lose your capacity to think. Instead, it’s a sad trickle-down economizing of the brain. Things that were once easy are hard, things that were once hard, now seem impossible, so the brain disperses its wealth a bit less directly.

This is strongly tied to the complete lack of motivation symptom. Whereas before you might have taken the time to find the right word or look for those glasses or censor yourself before you speak, these filters and skills now seem a superfluous waste of brain energy. Your mind just leaps over them. So you make up words, buy another pair of glasses or walk around blind, and tell your boss, family and friends exactly what you are feeling in that moment. Not good.

This also makes daily tasks like driving not such a good idea. I’ve read a lot of debates on whether to drive or not while hypo. I really don’t believe it is comparable to drunk driving, unless your drive also coincides with naptime. When I had severe Hashimoto’s 3-5pm was “naptime,” which meant if I attempted to drive home between these hours I looked a lot like one of those bobbing, water-drinking, plastic birds. So I had to wait it out to be safe. My commute was about 1-1.5 hours long. As hypo as I am now, that would be extremely dangerous. However, short drives have not been dangerous, just confusing. For instance, I have been going to a friend’s house 7 minutes away for the last 17 years. The other day it took me about 20 minutes because I forgot where I was going, passed it, and couldn’t remember how to get back right away.


Other examples of mind leaping:
• Got lost going home while following another car.
• Experienced a surge of homicidal rage towards a stranger with a “No fat chicks” license plate.
• Wore a shirt inside-out.
• Have said “you know what I mean,” about 1000 times. They never do.
• Frequently find myself in rooms, wondering why I am there.
• Missing: one pair of eyeglasses, two pair of sunglasses, several outfits, multiple dishes, one toothbrush, shampoo and conditioner, a scrabble piece, a scarf, books, Tupperware, the remote, a TV for the remote, and (surprise) socks.



GARFIELD SYNDROME


Refers to the laughable and lovable cartoon cat, not the former Pres. Described as “weakness,” “fatigue,” “tiredness,” etc. In my opinion, also inextricably linked with a complete and utter lack of motivation. From a physical standpoint, a lot like having the flu. This is probably the worst and most debilitating part of it all, especially if you are used to being a productive member of society. We have all had those days where waking up is the hardest thing to do (holidays, weekends, illnesses, unwelcome tasks). You are lying there because some godforsaken creature (an alarm clock, a bird, a cat, your husband) has woken you, but you can’t think of a single thing that makes getting out of bed worthwhile. Even with a full bladder or rumbling stomach, you lay there, mentally tabulating the pros and cons of staying in bed forever. Now imagine that that is every day.

I am quite lucky in that I do not have a job to go to right now. If I did, I would most assuredly lose it. If there is not one already, someone should create a thyca website devoted to tips and tricks for getting through a normal workday. On the worst days I have barely managed to get myself to the kitchen (downstairs) for food and to the bathroom (3 feet away). My absolute favorite activities—painting, writing, reading, biking—have all lost their appeal. I have gone a week without checking email (Inbox: 124), a month without checking mail (bills!), and several days without stepping outside (blindness). It took me more than five days to complete this blog. I do not recommend this.

I have found that the best treatment for GS is outdoor exercise, preferably with a friend who is willing to kick you a couple times if you decide to nap in a stranger’s front yard. Actually getting out the door is the hardest part, but I found that once I was actually doing something, a fair amount of the usual desire to do it returned.

ACHY-BREAKY EVERYTHING

As with all other symptoms here, it is difficult to tell what to attribute to hypo and what was already a problem. For instance, I was in a car accident in June 2008 and have experienced neck pain and major knots in the neck and shoulder area ever since. I have had headaches my entire life, but they tend to get more frequent during specific times in my life (stress-related) and most recently are tied to my neck issues. This is why I was seeing a chiropractor and a neurophysiologist.

However, when I told my neurophysiologist about my thyca diagnosis, he told me he would hold off on recommending any further treatments until I’ve been on Synthroid for a while. Apparently this miracle drug might just help with my neck as well (yay!).

Being hypo definitely exacerbated the usual amount of pain I experience in these areas. It also caused a general but bearable soreness in my legs, arms, stomach area. I think if you were not previously experiencing any kind of injury, this will be an inconvenience akin to normative menstrual cramping: nothing to scoff at, but nothing debilitating. Again, the best medicine for me was outdoor exercise, but take it easy.

Weight Gain

Check. Uncheck. Check. During treatment I would not let this become a major concern. I am not above vanity, but when your body is dealing with so much confusion and your hormones and metabolism being dealt such rapid alteration, it is hardly worth stressing over. I have not really kept track of pounds over the course of this, but the fit of my clothes has altered both ways over the last month. I went from liquid only diet (loss) to a few days of gorging on soon-to-be taboo favorites (gain) to the low-iodine diet (both). My appetite has come and gone, but is generally smaller (likely due to food restrictions). The diet is great because I have had to give up processed, restaurant and fast foods, but the benefits here are probably outweighed by the increase in sloth. So rather than drive myself nuts with a balance sheet, I am trying to stick to the healthier recipes in the cookbook and force myself out of bed.


Sensitivity to Cold

Check. I was already a very cold-natured person. My mother and I are those strange people who carry sweaters around our waists in July (in TX) in case we have to go into a grocery store, movie theater, restaurant or other place that have no fear of A/C bills. Post-op, it was even worse, manifesting in A/C battles with my husband (I kept turning it off completely and he is very hot-natured), going around in the car with no A/C (if you are from TX, I just heard your gasp), and wrapping up in those sweaters (indoors and at night mostly). If you live in a colder climate or are experiencing this during the winter, I recommend migration or dressing like this guy>>>>>>

Slow heartbeat

Also called bradycardia This is a little scary. Most of the time I do not notice it, but when going to sleep, I no longer feel entirely comfortable sleeping on my back. Lying down still feels a bit like choking, my heartbeat sounding loudly in my throat and my breaths gaspy. So I lie on my side.

Dry Skin and Brittle Nails

Not a big deal. The most I noticed were little patches of dry skin around my fingers and toes. No peeling or irritation. A small bottle of lotion helps.


Constipation

I’m talking bowels, people. A TMI topic, so I will leave it at this: my mother-in-law warned that it would behoove me to stock up on things like Benefiber and things ending in “lax.” She was right. Use sparingly.

Heavy periods 

Did not notice a difference.

Hair Loss

Not yet. But I have plenty to spare.

Depression

Seriously? Mary frickin Poppins would be a little depressed in these circumstances. Just hide the knives and stay away from tall windows.

Tingling Hands and Feet

Also called paresthesia. Annoying but not painful. Take lots of calcium supplements, especially since you can’t consume any dairy. TUMS also help with stomach discomfort.

Slow Healing

I’ve noticed that I bruise more easily, that they last longer and that they are more painful than usual. For instance, I have never had a problem giving blood in the past. When you have cancer, doctors ask for blood like cops asking for a driver’s license. Normally I wouldn’t even remember which arm they took it from, but lately I am left with achy green and purple marks at the site, each lasting a little over a week. Also, I had my first stye and it lasted a month. Would not go away for all the wash cloths in the world.


Some Tips for Making Hypothyroidism Bearable:

• Heating pads and a tube of Icy Hot are indispensable for aches.

• Triple-check ovens and locks.

• Take off your valuables and put them in a safe place. Tell someone you trust where that place is. As someone who is forever losing things, I decided not to risk the additional memory loss. So my wedding ring and other jewelry are on vacation (helps with hand-swelling anyway).

• Put aside some good books and a stack of movies. Even if you are the most ambitious type-A personality in the world, you will be forced into downtime. Might as well make it enjoyable. I preferred to revisit favorites because I keep falling asleep in the middle of things.

• Carry water and energy snacks with you everywhere. My favorites are a baggie of unsalted peanuts and raisins, apples, bananas and clementines. Just don’t forget them in your purse for too long…

• Long hot baths are great. Just don’t fall asleep.

• Do fun, stress-free, non-food activities with the most forgiving of your friends and family. Try not to play games that are too competitive or high-risk. Make sure whomever you are spending time with is aware that you may not be feeling your best, may say offensive things, may get emotional and may need to leave. If these things do not deter them from wanting to spend time with you, count your blessings!



''Nobody can tell what I suffer! But it is always so. Those who do not complain are never pitied.'' –Mrs. Bennet, infamous hypochondriac of Austen’s Pride & Prejudice

7.06.2011

The Low Iodine or Iodine Free Diet

7.6.11

Be Prepared for the Low Iodine Diet

Hmm. Things have been a bit more confusing than usual lately. My mind is definitely fogging over at this point. I was hoping the brain-washing part of hypothyroidism was exaggerated. More on that later.

I did not officially start the low-iodine diet until this past Wednesday, because the Red Lobster leftovers in the fridge were far too tempting on Tuesday. I do recommend having one last big seafood/salt bash before the diet, because it makes it all feel a bit more celebratory, but it’s not such a good idea to bring anything home. Also, that meal will be thought of often and with great lust. You may even have strange dreams about shrimp and salmon.

My BIGGEST mistake by far was not preparing way in advance for this. Not that I wasn’t warned. All those handouts and cookbooks have it printed right on it: “Before you start becoming hypothyroid, prepare the basics and freeze.”

But it’s not in bold. Or 2000 point font. Like it should be. Consequently, I went from glorious seafood feast to nothing but raw fruits and veggies. Under normal circumstances, I like these foods. But a whole day of eating only blueberries, pears and carrots made me a bit cranky.

Worst crash diet ever. Not great on the digestive system either. But I had nothing else to eat. Most everything else is off limits unless you cook it yourself and I am not a cook. And depending on whether you are a heavily processed-food dependent, microwave-meal toting person (like me) or a super health nut (they do exist), this could be easy (the latter) or could cause you to shoot daggers of hate at your otherwise beloved husband as you munch on another damn carrot stick and he delves into the most coveted leftovers in the world (the former).

For the sake of my marriage and sanity, I had to learn to cook quickly. Fortunately, I have awesome friends, Lillian and Jenny, who actually like to cook. They definitely saved me from cheating by helping me prepare no-iodine foods other than raw fruits and veggies.

The THYCA Cookbook is Your New Best Friend

Initially I was quite suspect of the thyca cookbook. I figured that “low-iodine” was comparable to “gluten-free” or “vegan” or any of those other code words that I (ignorantly) assumed meant having no taste. But everything I have made from this cookbook has been amazing. Truly delicious. The oatmeal cookies (made for me by my mother-in-law) are the best I’ve ever had.

Again, I can’t totally or sometimes even partially take credit for these successes, because as a novice cook with a half-functioning brain, I am a bit helpless in the kitchen. With Lillian I made three delicious dishes:
Pasta salad (p.19)
Rachel’s Greek-style chicken (p. 44) and
Chocolate zucchini bread (p. 90)

In my fervor to make consumable food, I made almost three times as much pasta salad as the recipe calls for. While the first six bowls or so were delicious, I now cannot bring myself to even look at the leftover pasta salad in my fridge. I certainly cannot bring myself to eat it. Moderation and variety are definitely key to this diet.

However, I will say that I replaced the peas and corn it called for with sweet peppers and avocado and it was, initially, a very tasty dish. We also improvised with the chicken a bit. Being short on lemons, we added one orange and some orange juice to the dish (yum).

The zucchini bread is a definite hit. I have had 3 requests for the recipe from people not on the diet. And, if you are a chocoholic like me, a treat like this is almost a necessity. I recommend sharing the desserts in this book as much as possible. It helps you gain back some of the normalcy and popularity you lose in not being able to share in normal meal practices.

With Jennifer, I made the Spanish potato salad (p.20) and orange and apple muffins (p. 99). Again, we varied the recipes a bit, out of necessity. For instance, the potato salad recipe is far too similar to the pasta salad recipe to make its consumption desirable. So we replaced the oil-and-vinegar dressing with the homemade mayo (p. 23).

Warning: prior to refrigeration, the look and smell of the blender mayo is almost unbearable, especially if you have an aversion to vinegar. It is a horrible puke-orange due to the paprika and not even close to the fluffy consistency you would hope for in a condiment. DO NOT SMELL IT. Just trust me. Despite this, when chilled and mixed with the potatoes it is actually a quite pleasant and mild tasting addition to the diet.

I never quite realized how much of my social life revolves around food until this diet. Eating out at a restaurant is no longer an option. After a fun day at the zoo with my friend Brooke and her daughter Kynlee, we went to Chili's. I considered ordering the one allowed restaurant food, a baked potato no skin, but on a 100 degree day and without access to non-iodized salt, the appeal was not great. So I munched on the snacks I had hidden in my purse (carrots, apple, zucchini bread) and sipped on a Sprite. I felt like a criminal. The waitress never said a word and, perhaps if I had gone through a lengthy “this is my cancer diet” speech, any complaints would have been nullified, but still. Criminal. A sneaky food trafficker.

I also had to miss out on a birthday dinner at P.F. Chang’s. My one year wedding anniversary is around the corner and I will not be going out to eat. I will not be able to eat the piece of wedding cake that stares me in the face every time I open the freezer. Not that I’m terribly superstitious or anything, but it would have been kind of cute to participate in a nonsensical good luck tradition with my husband. We don’t do nearly enough nonsensical things.

Fortunately, I have this beautiful loving family. Have I mentioned this before? One group of my in-laws (paternal) found ways to include me in their cookout, and I got to enjoy a pre-4th of July no-iodine burger. The best treat of all was having an entire no-iodine feast prepared for me by my maternal (?) in-laws. No-iodine pork chops, corn, bread, salad and those cookies I mentioned before, the ones that taste like angels made them. Angels who have the sole task of making cookies for god. I’m not joking.

As of now, I am scheduled to go in for RAI treatment on the 13th. I have, at different points been scheduled for July 4th, 5th, 27th, and the 1st of August. This doesn’t make for a great story, but it’s part of my experience. The sources of this scheduling confusion appear to be two-fold: 1) my TSH levels skyrocketed beyond what was expected; after only 2 weeks post-surgery they were well above 50 (they only need to be above 40 for RAI). 2) my doctors keep disappearing; I suspect they are all on vacation. In fact, I have to wait for one to return from vacation in order to get my latest appointment officialized. I am making up that last word because I can’t think of a real one.

Time for another nap. But before I go....

Some tips on how to make the low-iodine diet bearable:

• Cook and freeze weeks in advance, before the surgery if possible
• Celebrate with your favorite meal before you start the diet
• Purchase non-iodized kosher salt
• Aim for variety, not quantity. The diet is usually for two weeks, but even after a
week on 5 different dishes (not including fruits and veggies) food feels repetitive.
• Sweet was once my favorite flavor, but it is almost the exclusive flavor of this diet. Make as many unsweet things as possible. This means if you are preparing meat, don’t make the fruity meats. Make a plain bread in addition to the dessert ones.
• Carry snack bags of food everywhere you go. Energy is a constant problem.
• Since you have to cook, cook for others beside yourself. Bring low-iodine dishes to parties. You might hook some low-iodine bandwagoners.
• Try not to spend too much time around restaurants or people eating foods not on the diet. You might resent them in spite of yourself. Try not to resent the non-dieters. It’s not their fault.