I'm Moving On: New Blog Location & When to Dump Your Doctor

Quite literally in one sense! This blog will no longer be hosted by Blogger! Instead, I have created a new Word Press blog space on my website: http://www.dancingtreesmedia.com/blog/ where I have more control over the visual elements of my pages and can hopefully share my writing with more people.

This move brings my musings closer to home in many ways. When I first started writing about thyroid cancer, I felt that it was necessary to keep my real identity separate from the (sometimes excessively) emotionally raw persona who blurted out everything she experienced. In fact, I felt a huge amount of shame about my cancer, shame that I may never entirely shake off.

Survival Means Moving On, But How Far?

I am not free from my desire to separate myself from my cancer. No one wants to be defined by an ailment. When I am reminded of my cancer, it is often startling and terrible, like suddenly recalling a childhood trauma. It is a part of me that I lock away for the most part and I think that is mostly healthy. You can't live life in constant fear of death or more specifically a cancer recurrence. I want to be the person I was before, only better. After all, surviving something terrible is supposed to make you stronger, more conscientious, etc. etc.

So I can't ever entirely move on. When this started, I didn't even know what a thyroid was. And there are many other women who still have no idea what a thyroid is. Some of whom have thyroid problems that they blame on themselves or their jobs or life. Their doctors tell them to eat less and exercise more. People look down on them for being overweight and accuse them of cheating their diets. And they will struggle and feel tired and achy and cold and hate themselves and starve themselves and it will be a horrible endless cycle unless somebody tells them, yes, you have a thyroid problem! And yes, it is okay to seek treatment for that problem!

IMHO, there are not enough people out there advocating for thyroid awareness. That little butterfly-shaped organ is a HUGE deal! It controls your metabolism, hormones, and weight in ways that most doctors don't even understand. But there still exists a pervasive stigma against even suggesting you might have a thyroid or "glandular" problem.

I just started reading the book The Thyroid Diet Revolution by Mary J. Shomon (and will certainly reveal more insights as I read further). In her introduction, she indicates that "recent studies have conservatively estimated as many as 27 million people have a thyroid problem, the makority of them undiagnosed. [But] some experts believe that the actual number is substantially higher, more like 59 million people, and rapidly on the rise." Throughout this blog I have also quoted many statistics about thyroid cancer as the most frequently diagnosed cancer, etc. Hopefully you do not doubt that thyroid issues are widespread. (If so, leave me a comment and I'll find more sources for you!)

But claims to thyroid or gland problems are still a running joke in this society, seen as an excuse fat people use to get fatter. Doctors still laugh in the face of patients who are befuddled by their weight gain and fatigue. And while I disagree with Shomon's assertion that there is less of a stigma associated with thyroid cancer than with other cancers (hello "good cancer"), I have seen firsthand the unwillingness for women to even consider a thyroid condition as the source of their aliments.

 In fact, while I may be a bit hyper-vigilant in the aftermath of my own diagnosis, when I have asked certain of my friends to please for godssake check their necks, I have been dismissed! My mother, while fully aware of the thyroid problems in her family, insisted for years that she was the "only one without a thyroid problem," only to get diagnosed with Hashimoto's Disease recently! My aunts were so ashamed of their thyroid cancers, I only found out after my own diagnosis! My mother-in-law, a doctor, says that after my tests came back positive, she has been more vigilant in looking for thyroid nodules and has had at least three more patients diagnosed with thyca!

When to Dump Your Doctor (Even If They Are an Endocrinologist)

I dumped my doctor immediately after being diagnosed. My mother-in-law found my nodules through a routine physical, and the fact that MY doctor had failed to find these things felt like a betrayal! Especially when I had been to her 6 months before, asking to be tested for thyroid problems! Those tests came back negative even though I had a 3cm tumor growing on my thyroid. Even though I have a family history of Hashimoto's and thyca.

This may not have been entirely fair since she may not have been aware of the change in TSH standards and she knew very little about my family history (because I knew very little about it).

Shomon points out that it is very difficult to convince a doctor to even test you for thyroid problems and even if you get that far, you might not get help, because "HMOs and insurers want to control costs, so they don't agree to pay for tests. Doctors don't agree on what tests to run or how interpret them, creating a situation in which you can take the same blood test result and show it to two different doctors in the same practice, and one will say you have a thyroid condition and prescribe medication, while the other one will say you're fine." Even if you're not.

If there is even a CHANCE your doctor is not taking you or your health or your feelings and intuitions and self-knowledge about your healthy seriously, dump them. I am in this situation with my current endocrinologist. Unfortunately, as I am uninsured (self-employed) and even a meet-your-new-doctor visit costs $300 out of pocket, I am stuck with him for a while. So I am basically wishing better luck for you.

You should dump your doctor if:

1. They don't give you regular neck checks. This is standard. You shouldn't have to ask for one, but if you really like your doctor and they are not hip, tell them you want it to be a part of your physicals from now on. This is the first and foremost way to detect thyroid cancer/Hashimoto's, and early detection is absolutely essential! Shomon includes two pages of diagnostic procedures your doctor should be doing, which I am attaching to the bottom of this blog (excerpted from a Google Books preview, so not exactly stolen). I was confused when my mother-in-law started feeling my neck as part of her physical, because she was the first doctor to do this! And I can only wonder how long I went undiagnosed....

2. They won't give you a thyroid test. No ifs, ands or buts. If your doctor cares so little for your sense of well-being and has so little respect for your opinion, that they will not order a test that should probably be a standard for women over twenty anyway, dump them! Immediately! And be sure to tell them why. Maybe they'll change their tune after a few patients walk out.

3. They laugh at you. Self-explanatory really.

4. They don't believe you. If your doctor doesn't trust you, why on earth should you trust them? At my last appointment, I started to tell my endo how I had been feeling lately, not for kicks, not because I'm a lonely woman who likes to talk for no reason, but because I though it might be pertinent to my biannual examination! But instead of listening and taking notes, as I have had many good doctors do (mostly female), he interrupted me and then said "We don't deal in feelings here. We deal in TSH levels. Science." In a rather condescending tone. Well that shut me right up. It shut me up so well that I forgot to ask (or maybe could not get up the guts to ask) the questions I had been gathering for 6 months. What is the point of paying $300 for an appointment if I am too intimidated to inquire after my own health?

Shomon quotes so many examples of woman and thyroid problem patients being dismissed by doctors, it sounds like an epidemic! And some of them say far worse things, basically calling patients liars to their faces. Women are more likely to die from heart attacks than men for the very reason that their doctors don't listen to them. There is a long misogynistic history of dismissing women as histrionic and overly emotional. Don't let your health get sacrificed to sexism!

5. They don't return your phone calls. First of all, you should never, NEVER, have to call repeatedly for test results. I have been waiting over a month for my TSH results. I even put off calling in my prescription as long as I could, convinced that the doctor's nurse (since I NEVER get to talk to the doctor directly outside an appointment) would call me back. I was told I would be called in four days. Still nothing....

My main point is NEVER assume that 1) your doctor knows enough general medicine to keep you healthy or 2) that they have your best interests at heart. I would like to believe that they do, but history and experience have proven otherwise. Be good to yourself and find a doctor who cares and is willing to learn.

Chances are, you have health insurance, and if you have health insurance, you have options. Hopefully there is not only ONE endocrinologist in town. So choose your doctors carefully. Have respect for yourself, your body, and don't be afraid to ask questions or to tell a health professional there is something wrong. Trust yourself, get treated and move on!

Spirit Walk: How to Be Alone in the Wilderness

Womanhood Means You are Not Alone

Happy V-Day! By which I do not only mean Valentine's Day, but the V-Day that Eve Ensler began in 1998, a day of calling people to arms in the battle against violence against women. It is "Victory Day," "Vagina Day," a positive celebration of womanhood that is still surprisingly well met in a day and age when "feminists" are still largely derided and dismissed.

If you have not yet seen a production of Ensler's "Vagina Monolgues," I highly recommend you do so when you next get the chance. It sounds strange, I know, but it is a series of brutally truthful and emotionally poignant stories about women and their relationships to their bodies. The first time I saw it, I realized how NOT alone I am in many of the feelings and situations and worries and joys that come with being the owner of a female body. Despite our nation's sexual obsession with the female body, or actually, probably because of it, there is also a disturbing cultural silence when it comes to the functions, dysfunctions, psychological, physical, emotional (and realistic sexual) experiences of being a woman. This silence is only starting to crack with the voices of online communities and unapologetic books like Naomi Wolf's Vagina: A Biography.

 When V-Day comes around, I always vaguely wonder about its intersection with Valentine's Day.

After all, Valentine's Day does not hold a great deal of significance in our society anymore, if ever. It has become (and may always have been) the day when heterosexual men make public displays of gifts to heterosexual women in exchange for sex, or (the joke that won't die) at least not getting yelled at. It is the "Hallmark holiday," a media boondoggle, a day for making nonhetero couples and singles feel bad about what they do not have, etc. Basically it's a joke.

But all jokes have a morsel of truth at their center (which is why joking can be so effectively hurtful, a powerful bullying tool that can be dismissed as "all in fun"). If, at the heart of Valentine's Day, there is the truth of a universal human desire to give and receive love, it is the perfect V-Day.

What better demonstration of love to our mothers, sisters, wives & daughters can we make than to become involved in a movement that actively seeks to ensure their safety? To protect them from becoming the 1 in 3 women who will experience violence in their lifetime. To demolish that statistic.

Those who oppose V-Day, and the Violence Against Women Act, and speaking out about violence in general, accuse those in favor of these things of setting up a false dichotomy in which all men are potential rapists and all women potential victims. This is at best a hasty and misleading generalization. At worst, it is an effective scare-tactic used to keep women in their place of silence and invisibility and perpetuate their fear of getting associated with those nasty, man-hating feminists.

Yes, most rapes are perpetuated by men against women. But VAWA, NOW, V-Day celebrators, and anyone seriously endeavoring to end sexual violence will of course acknowledge that men, boys, girls, and transgengered individuals are also in need of and deserving of protection from violence. But also, realistically, there are some horribly archaic social attitudes out there that specifically enable and even normalize sexual assaults against women. These need to be addressed and happily are being addressed, by beautiful, man-loving communities of women.

But What About When You Are a Woman Alone?

You are probably asking yourself at this point, what all this has to do with spirit walks and wildernesses or even, my god, how long is she going to go on about this?? (Ahem.)

Well. I recently read two phenomenal books by Cheryl Strayed titled Wild: From Lost to Found on the Pacific Crest Trail and Tiny Beautiful Things respectively. Wild, as you probably guessed, is about her journey across the PCT, a 2,663 mile long hiking trail and the ways that this journey helped her to reflect on and cope with her rather volatile and aimless existence after the death of her mother. What makes her journey so enjoyably readable is the way her every thought and action drip with humanity; how fragile and imperfect and wandering she is and how much we identify with her because of this.

But despite how enormously brave she was to take on such a journey and especially to do it alone, I couldn't help but think she was also being enormously stupid. I was distracted from her triumphs by the tiny horrible voice in my head going She is going to get raped. She is going to get raped. Sheisgoingtogetrapedrightnowohmygodrun!

Because women are not supposed to be alone. It is one of the first lessons we learn, even before we break from childhood. When we read Little Red Riding Hood and Goldilocks and Sleeping Beauty and other cautionary tales (if you are curious about the darker origins of these you might read this chapter from Underground Education). When we get a curfew an hour earlier than our brother's. When we aren't allowed to go to the concert or the corner store or the sleepover. When we are first told to wear longer skirts and higher shirts or "boys will get the wrong idea." When we go the laundromat at night and the sight of someone else makes us jump ten feet. When we are in a deserted place and suddenly hear footsteps behind us. When we are pulled over by a male cop, approached by a man with a cardboard sign, hugged or touched by a stranger who calls us "sweetheart," whistled at in a parking lot, honked at on a sidewalk. All these things signal DANGER! They remind us that we, foolish simple gentle sex, have taken our lives in our hands by the simple act of venturing out alone.

And sadly, for many of us, this is not an unfounded fear, but one that is more deeply etched into our skins each time we are raped, touched inappropriately and undesirably, or hear of these things happening to our friends, mothers, sisters, daughters.

So when Cheryl Strayed spoke of going for a 4 month spirit walk in the wilderness, ALONE, with nothing more than a whistle for defense (a whistle??), I thought You idiot! You're Crazy! And all along her journey, she meets people who basically say the same thing to her (a bit more politely). She meets person after person willing to go out of their way to help her BECAUSE she is the poor, crazy woman alone. Only one man really does act like he would have attacked her had his friend not interrupted him. But obviously that one would have been enough. That one assault, that one violation, would have changed the entire book. Would she have even written it? What would she have taken from her journey? Would it have still been a triumph?

I want, so desperately, to take from Strayed's adventure the lesson that women, me included, now live in a day and time when we can go out, even after dark, even into the wilderness, or the gas station, or the laundromat. That if you are brave and confident and self-sufficient people will help you or at least not interfere with your journey. I mean, to think of all the things we miss because we don't go out past dark--because we don't take long nature hikes or camp or travel or jog or climb or take any other adventures by ourselves--is infuriating. To think that I will not go out walking in my own damn neighborhood after dark is ridiculous and depressing and true.

What Strayed created with her story is revolutionary. An entirely new genre of women's lit. A woman taking a spirit walk that is not only metaphorical, but physical. A grueling, strenuous, strengthening, literal walk out in nature. How many stories do you know like this? When Austen's women are faced with dilemmas, they take self-enlightening walks, but never get further than a few miles geographically. The Hunger Games, while science fiction, depicts a girl relying on her physical and mental strengths to survive a journey through the wilderness. This too, has been hailed as revolutionary for its adventurous heroine.

So maybe, even if we are not quite there, women are carving out a new identity. One in which we are not only strong in mind and spirit, but strong in our bodies and our ability to keep them safe from harm.

Negotiating Cancer

So what do we do in the meantime?

Reading Strayed's book made me instantly want to follow in her footsteps. To launch myself into a forest or desert or ocean with nothing but a survival kit and a few good books. However (saw that coming), there are still a few things in  my way; ties to society, family, a job, dependent cats, my fear of heights, etc.

In the meantime (a rather indefinite meantime), I am navigating the wilderness that is cancer. And not only in cheesy metaphorical ways. My physical adventure is cycling. The lakes and parks I bike near are probably the closest I will get to "wilderness" until my next camping trip. Despite my best efforts to recruit fellow Thyca cyclers, I usually bike alone. And I try to go at times when there are not many other people around. When I bike alone, or mostly alone, I am not looking backward or forward, worrying about the people around me. I am able to be in the moment, smelling and seeing things, feeling each movement more sharply. And this time is like a spirit walk: I get lost in my thoughts, I write in my head, I gain confidence in myself as I get closer to the goals I set.

This blog has been another Spirit Walk through cancer. When I have a thought or fear or anxiety or revelation or dream or joy related to my cancer, I come here, not to bestow wisdom (great as it is), but to wrap my head around a new and terrifying chapter in my life. I certainly don't have the answers. Writing is a comfort to me, an attempt to reach and connect and understand. 

I have often written about my experience of cancer as a loss of control. We mere humans spend most of our lives trying to get things under control: figuring out the undecipherable, sketching out plans and to-do lists, manipulating bodies and personalities and events to realize specific ends, negotiating with God and uncertainty, if not outright trying to dethrone them. But the stars are forever doling out chaos to remind us of the even-more-human need to let go. For myself, I was busy grading final exams, cleaning out my desk, un-decorating my classroom, distracting myself from the unknown beyond my first and only career of teaching when I received the call that washed away all my carefully-built sandcastles.

Figuring out how to respond to this sudden upheaval to my sense of self has been an ongoing struggle. At times I have believed I should simply accept my cancer, become at peace with it in some New Age quit-shaving and meditate kind of way, and other times I have called my fellow THYCA peeps to arms against the injustice that is thyroid cancer! But neither battles nor peace pipes are the best means of dealing with the kinds of head-whirling life-questioning heart-wrenching craziness that shakes your world and sense of self from time to time.

What we need are spirit walks. And no matter how that physically manifests itself, it is always a journey of self-discovery where we thoroughly explore our sufferings and the changes brought about by these sufferings. Are we truly a new person? Can we trust the dark natural world indifferent to our plight? Can we trust ourselves? Anything? Do we have the strength to survive? Is strength what it takes? Is survival enough?

Every question needs to be acknowledged, contemplated, prodded, even if there is no answer to be found. The answer may be that there are no answers. Which I realize all sounds far more New Age than I intended. We may still live in a world where little girls get gobbled up when they go into the woods. But our story does not have to be Red Riding Hood or Goldilocks or Tess Of the d'Urbervilles. Our story could be like Strayed's.

A little girl wanders into the wilderness. She walks out a woman unafraid. 

In Case You Were Wondering

How things are going 218 days into being cancer-free, here are some not-so-official updates.

Sickness is a way of reminding you to never take your health for granted. Perhaps I was getting a little overconfident. A little slack in my exercise regimen. A little boastful about not getting sick for the past two years. (Besides the cancer of course.) I started down the magical-thinking trail that the removal of my cancer meant the removal of a weak immune system. And the universe laughed. Ah, universe. My husband and I have been through 2 flus and 2 colds this January, which basically spanned the entire month, rendering 2013 my least productive year so far (I'm hoping to catch up at some point). Or more accurately 2 flu-like thingys and 2 cold-like thingys, since neither of us have been officially diagnosed. He doesn't believe in doctors and I can't afford them. Anyway, not a great start.

Especially since this is going to be my year.

Here is my thinking. 2011 won hands down in The Worst Year Ever category, with job loss, cancer, and 3 deaths. 2012 was basically Recovery Year, or the time needed to piece my life back together again. So this is it. The big one. The Year of Accomplishment. And 13 just happens to be my lucky number.

Just so you know, I can see you rolling your eyes. (Not really. But Big Brother probably can.) I get that everyone makes lofty new year's pronouncements and that only 1.27D to the nth ever live up to them. I once read, heard or watched something about a woman who had nothing in her life, so she cut out magazine pictures and made a kind of wish-fulfillment collage and in looking at these images every day and willing them to happen, had her dreams come true one by one. And if you are thinking “what a bunch of malarkey” and now your eyes have rolled into the very back of your head, then my original pronouncement doesn't seem quite so ridiculous, now, does it?

 Let's see, this had a point to it.... Ah, health. Despite being rampaged by various viruses and bacteria of late, I have nothing to complain about. After cancer, the only illness you're really going to throw gloves at is more cancer. And it is 120 or so days until I have to go through the whole radiation rigamarole again. For the most part I feel as human as the next person. My scar has healed incredibly well, to the point where even I forget to notice it. I will say that I used Mederma for at least the first year, though less consistently than I should have, and I usually stay out of the sun or put sunscreen on my neck. As promised by my surgeon, my scar resembles little more than a neck crease.

 My scar as of today:

From slasher film to barely visible:

 But like I said before, I don't want my scar to disappear entirely. While a small selfish part of me would like to forget this cancer debacle entirely, I mostly know that having had cancer makes me far more conscientious about how I take care of myself and about how I use my time. Honestly, if I had to choose between undergoing the knife again and jumping out of a plane, it would be a close call. It freaks me out just thinking about the fact that people were once INSIDE my neck. Also, I somehow got a hold of the original transcripts of my surgery and started to read them, something I recommend to NO ONE. So now, when I think about my surgery, I think about it in graphic Grey's Anatomy thank-God-I-was-under detailed imagery.

The only other cancered aspect of my life is Synthroid. It's not that big of a deal until it is. In other words, I'll take my pill night after night without thinking about it and then I'll go somewhere for a night and realize I don't have it with me, or I'll lose the pill bottle, or my prescription doesn't get refilled automatically and all of a sudden I'm a little bit panicky and the people around me are a little bit panicky because this is the pill that keeps me living. How weird is that? To depend on something man-made, something synthetic, for life? Like leaving a kidney in the wrong pants pocket. You're not going to die right away, but do they add up? As in forgetting one night is okay, but forty-two nights means your done-for? (Sigh.) What I don't know about thyroid cancer fills books.... I guess this dependence is not all that different from diabetics and insulin or asthmatics and inhalers. How many of us are just an idea away from oblivion?

 Everything else is about prevention. About doing what I can to avoid getting cancer again. I realize that this may well be out of my control. But in doing what I can, I am taking back as much control as anyone can expect to have. I still have a long way to go.

 Diet-wise I am still “mostly vegan.” Meaning I eat more fruits and veggies than I used to, but also way too many vegan burritos to the point where I temporarily hate beans, and meat whenever family members cook it and there are no other options. And fish about once a week because I love fish and am still 90% convinced it is healthy when cooked the right way and eaten in moderation. So I am still consuming meat about once a week. Unfortunately the change in diet has not translated into a significant weight loss for either myself or my mother. Probably in part because we were not huge meat eaters to begin with. I suspect bread is the worse culprit in our calorie consumption, but have no idea how to eliminate it from a vegan diet without starving to death. Mom has got it into her head that I need to give up soy now, but for the lactose-intolerant that is ridiculous. Honestly we probably just need to be more rigid about counting calories and exercise.

My exercise goal for the year is to finish the 64 mile ride for Tour de Cure. I finished the 32 mile ride the last two years, which felt pretty good considering I had just taken up cycling and just recovered from my thyroidectomy by the first ride.

My biggest goal for 2013, the one that encompasses and hopefully enables all of the other goals is to get on a schedule. I LOVE being my own boss. But it is hard to be disciplined with your time when you are setting your own deadlines. If I want to accomplish half of what I've set out to do, I need to supercallafragalisticexpialidocious-maximize my time efficiency (probably could have saved a minute not guessing how to spell that word). Did anyone else get whiplash from the new year? It will probably be June before I admit defeat and remember to write 2013 on all my forms.

Whether we are ready or not, here is the new year! Embrace it! We made it, and that alone is no small accomplishment.

 You too have survived another year. What blessings did it hold for you? What great adventure is next?

The Fault in Our Stars: Writing About Cancer

Writing about Cancer means you have to know how to laugh at yourself. There is a LOT of drama involved with cancer, but all GREAT dramas come with comic relief. Since it is unlikely other people will laugh at your cancer (it just seems crass), you will have to provide your own comedy.

I have had some issues writing about cancer. A lot of blockage and a lot of procrastination. There have been month-long droughts in this blog. And this blog is the easiest way for me to write about cancer, largely because I make fun of myself every chance I get.

I recently started reading The Fault in Our Stars by John Green. The reason I haven't finished reading it is because I was reading the "look inside" clip on Amazon, and now I have to wait for the actual book to ship before I can read the rest. So far it is excellent. A cultural phenomenon. Why? Because it is hilarious! Green has the gall to poke fun of cancer, even its darkest facets, and people gobble it up because no one in their right mind can get through those depressing cancer-victim-journeys-toward-death-with-a-smile-so-family-is-at-peace narratives more than once. (Anyone read My Sister's Keeper twice? Anyone??)

** Since last working on this blog I have FINISHED reading The Fault in Our Stars. I will commence reviewing the book without spoilers because I hate spoilers.

Wow. I have to (kind of) take back what I said before. Good writing about cancer must include laughter. GREAT writing about cancer must inspire both laughter and tears. This book made me laugh my ass off and cry my eyes out. Hazel Grace and Augustus Waters are two of the most genuine and emotionally compelling contemporary characters written into life and they are scribed indelibly in my heart. Hazel Grace is a teen with thyroid cancer, (and as far as I know may be the ONLY fictional character with thyroid cancer) which has metastasized to her lungs, requiring her to carry an oxygen tank and leaving her perpetually breathless. Augustus Waters traded a leg to bone cancer. They fall in love. This is NOT a typical teen romance.  A) There are no vampires or werewolves. B) And yet, these are no ordinary teenagers.

The protagonist and her love are lovable because of their attitudes towards their illnesses. These are not people who take life for granted, dwell on the bad, or waste time feeling sorry for themselves. While the few angsty, volatile moments they have are entirely understandable, for the most part these are the people we want to be (or would want to be) in moments of crises. They neither rail against fate nor submit to it. They allow themselves to be ill, but do not let it change who they are. They are (almost) impossibly strong in weakness, joyful despite pain, defiant in the face of death, and somehow Green accomplishes this without the slightest hint of bravado, or sap, or other excessive emotional narrative traps easily fallen into. Every bit of dialogue and action stays true to the characters, with whom you fall more in love with every page-turn. Isaac, who initially read as a simple foil character to the heroes and somewhat obvious symbol of social and psychological blindness, despite his more realistic and less appealing sensibilities, becomes a third unforgettable, about whom you will truly care.

DO NOT READ THIS BOOK IMMEDIATELY AFTER YOUR DIAGNOSIS

So here is the caveat. This is NOT an easy book. In some ways, it was one of the most difficult books I have read, in terms of emotional and psychological impact. I won't go into detail, but the sadness quotient is comparable to that of Tess of the D'Urbervilles, Anna Karenina, Tinkers, The Book Thief, A Tale of Two Cities, or The Women of Brewster Place, to name a few books that have caused me to sob for a long time and to reexamine life and its meaning in a philosophical, often existential way.

As the title indicates (a quote from Julius Caeser) there is a star-crossed lovers element to the plot. This is not only Green being clever, but also him hinting to his audience: "prepare yourself for a not-so-happy ending." So I don't think I'm spoiling anything when I say that at some point in the book you will be very, very sad. And possibly horribly angry at Green for having such an impact on you with his beautiful language and for not using that power to make you feel cloud-floating happy. All I can say is DO NOT GIVE UP ON THE BOOK.

I  had a very Gwyneth-Paltrow-as-Emma struggle ("I love John!" "I hate John!") with the author at the crisis. I put down my book and cried and could not return to it for another day. But I was very grateful when I did return for the conclusion. Green fully redeems himself for the heartache caused by the words of wisdom encapsulated in the last pages. Re-reading them for the sake of this blog causes me to tear up.

Green's writing is unequivocal evidence of having experienced personal loss. But he learned something from this loss important enough to pass on to the world. He tells us that that horrible, heart-wrenching, gut-stabbing pain we feel when losing, having lost or remembering the loss of someone we love is completely worth it. That we would not regret a second of time with that person or the smallest measurement of affection because it means that we loved with passion, we truly lived.

Cancer takes away your sense of security.

But it also gave something back to me. It gave me an appreciation for every day unlike what I had before. It gave me an intense desire to spend as much time as possible with my friends and family, to never waste a moment. There are people in my life whom I do not believe I could live without. I believe their loss would tear my soul to pieces. I believe it will be the most devastating pain in my life. And I could not be more grateful.

Call for Cancer Resistance

Cancer Awareness is not Enough

September, Thyroid Cancer Awareness Month, has come and gone. Several times during that month I started to blog about awareness and how important it is and blah blah blah. But a few sentences in it would start to sound blah blah blah to me. If I'm not convinced, there is no way you are going to buy it. And I DO absolutely believe that awareness is important. I think I've reiterated its importance in just about every post. Which is why I felt like I needed to say more than what I've already been saying and possibly more than what I myself know.

If you don't have cancer, you probably know someone who does or you wouldn't be reading this blog. Unless you are a hypochondriac or stumbled upon this while looking for horoscopes. So chances are you are aware of cancer.

If you have cancer, you are obviously aware of it. But you want more. You want action. Because just knowing about it isn't going to save you. In fact, you were a perfectly healthy, relatively normal person BEFORE knowing about your cancer, and knowing about it has screwed everything up.

Terrible confession of the day: I used to joke about cancer. I still joke about MY cancer a bit, with complaints about radiation (no spidey-senses yet) and what-not, but not in the same way. It is a little too close to home now. Before I had cancer, I used to tell my friends that of course I was expecting to get cancer, everybody got cancer, so why not have another Twinkie? When I was very young, cancer was a kind of status trading-card of sorts, i.e. how many grandparents have you got? 3, 1 died of breast cancer OR my dad works in pharmaceuticals and my uncle Herbert has skin cancer. Not really all that different from the other family facts and sometimes considered more interesting.

 But I doubt you are shaking your head and clicking your tongue at me right now. Because chances are you have joked about it too.

We Take Cancer for Granted

Don't quote me on this, but I think I am the only person who really takes my cancer seriously. With the possible exceptions of my parents. (And since reading this blog, my dad has strongly objected and fairly pointed out the many ways he has supported me through this ordeal. He will even wear a bracelet. So I am making him an honorary member of my caring club.) I felt a bit discouraged during awareness month when I discovered that my friends and family did not want to wear THYCA wristbands or display THYCA car stickers, even if I bought them for them. I will give a shout out to my friends Christina and Donna, who helped me distribute Neck Check cards. It's not that my family and friends don't care about me. It's just that my cancer is not that big of a deal to them. Thyroid cancer is supposed to be the "good" cancer (HUGE misconception). I didn't lose my hair. I'm doing lots of stuff, possibly more than before. I am officially in remission. So when I do something as radical as change my diet to get healthy, they think I'm crazy. Some of them even seem to take it a bit personally. My own husband thinks it is completely unnecessary and selfish.

And then there is society. As I've complained before, Thyroid Cancer tends to get the shaft in the contest of worthwhile cancers, and it's no use pretending such a competition doesn't exist. Breast Cancer is obviously the gold-medal standard. The whole NFL supports their cause. Thyroid Cancer doesn't even have a walk-a-thon in DFW, the largest metroplex of the South. With over 6 million people, and thyroid cancer affecting 1 in 97 people, we have the potential to have 67,000 persons with thyroid cancer (keep in mind I am not a math person). And most of them do not even know what the thyroid IS!

And it isn't JUST thyroid cancer. It is ALL cancers. I was not the only little kid who just ACCEPTED that people, especially old people, get cancer and die from it. I was not the only teenager who laughed because I just ACCEPTED that I would one day get cancer myself. And I am certainly not the only adult who has had a rude awakening when I in fact found out that it DID happen to ME.

We joke it away, because it is a bad thing and what else can we do? And at the same time we secretly believe it won't happen to us.

So here is my 1-2 punch to cancer:

1. BELIEVE THAT IT WILL HAPPEN TO YOU. 

If it doesn't, great. But you should care like it's your cancer. And keep this in mind: 1 in 2 men will get cancer; 1 in 3 women will get cancer; and 1 in 4 people will die from cancer.

2. BUT DON'T ACCEPT IT. RESIST.

As much in your heart and head as anywhere else. Resistance has to start somewhere, and all the money in the world won't fix things if we don't believe it can and should be fixed.

Can You Resist Cancer?

Okay, awareness is an important first step. Keep sending out the fliers and telling people you know and signing up for those walk-a-thons. But whatever you do, don't accept cancer as the inevitable. As a norm or a natural force like the wind. Fight the wind! Buy a windshield or a windbreaker or a window! Okay, the metaphor has been stretched too far.

Basically, the power of cancer lies in our thinking that it cannot be stopped. It is like He-Who-Shall-Not-Be-Named. In spite of all these fundraisers and t-shirts and ribbon stickers and sponsorships, we still just nod our heads to cancer, only outraged if it takes our closest loved ones from us, and only then if they are under fifty.

 I think I've mentioned before that I read comedian Albert Brooks' novel 2030, which suggests that cancer is a natural way of keeping the population in check and ensuring that people don't live too long. But it does not feel natural to me. It feels like the product of the chemicals and toxins that have also become normative in our society.

What happened to the Erin Brokovichs? Are we only outraged by cancer when it happens because of the pollutants soaking dumped by major chemical corporations? When it happens to a large number of people in a small area? When it happens to children?

With the anniversary of Steve Jobs death 3 days ago, there has been a bit more talk about cancer. To me, it is sad that it takes a celebrity death for some outrage to be expressed. But at least it is there.

Author and oncologist Siddhartha Mukherjee wrote an article titled "I'm Sorry, Steve Jobs: We Could Have Saved You," in which she argues that the deficit in cancer research funding is preventing us from finding treatments and cures. This article includes an impressive chart showing that the U.S. spent twice as much money on the Middle East conflict EVERY MONTH ($12 Billion) in 2008 as the leading cancer institute got that same YEAR ($5 Billion). She also mentions a rather impressive-sounding breakthrough in cancer research and the possibility that it will not be fully explored. 

You might say that the NFL sponsorships and ribbon-stamped milk cartons are strong indicators that our society does not accept cancer. I am not so sure. In fact, I believe it is now a kind of badge to wear. A do-gooder stamp that says "I am a nice caring person" or "I am a member of a sorority" or even "I am manly enough to get away with wearing pink."

Thanks to these breast cancer campaigns, cancer has a cool factor. It has catch phrases. TV time. Sex appeal.

It seems to me that with all the noise we are making, our hearts just aren't in it.

When you donate money or buy the specially-labeled yogurt cup, do you actually expect results? Do you think that you will see a news bulletin in the near or far future announcing that a cure has been found? Or do you secretly think that cancer is just one of those things that has always been around and will always be around.

Have we given up the fight before it even begins?

WHEN IS CANCER OKAY?

The answer should be: NEVER.

Death is inevitable. But painful deaths from invading tumors are not. And if you don't find old people all that sympathetic (shame on you), think about the fact that it isn't just grandparents anymore. More than 10,000 U.S. children are diagnosed with cancer annually. Childhood cancers are on the rise. Thyroid cancer, which largely affects young adults, is the fastest increasing cancer. It is now common for people in their 20s and 30s to be diagnosed with cancer.

But should this become normative? NO.

 Obviously, I do not have all the answers. At the end of the day, I have to climb down from my high horse and admit that I have not solved any world problems. Perhaps the best I can say is that I am aware of them.

But in my heart, a resistance has started. Will you join me?

It's Not That I'm Afraid of Cancer

It's just that I feel a little less invincible. At least, this is the way I've been trying to explain my recent "health kick."

My mother got back from CA yesterday, which means that today was DAY ZERO of our mostly vegan diet. I say "mostly" because chances are, if we are confronted by a piece of free, non-vegan birthday cake, or someone takes us out to a nice fish dinner, we are going to cave like dixie cups. But at least we are aware of our weaknesses. That's what counts, right?

I have spent my life sneaking food, afraid of the judgments I'd be faced with if caught with a Snickers bar or mouthful of peanut M&Ms. Turns out, people on the other end of the spectrum are judged just as harshly. The general reaction to my going on a six-week vegan diet has been that I have lost my marbles.

Honestly, I was one of the loudest protesters of this diet a few weeks ago. To me, veganism seemed just as unhealthy as one of those Hollywood liquid diets. But for all the reasons mentioned in my last blog, I have decided to give this a try.

It is one of the ways I am trying to fight cancer, which oftentimes feels like some omnipotent fate-weaving force, not to be looked at directly, nevertheless challenged. Cancer makes you feel vulnerable. It is a betrayal by the body you cannot escape.

The only way to beat cancer is to be healthy. This is not as paradoxical as it sounds. I have an unhealthy (missing, in fact) thyroid. But I have healthy legs because I ride my bike three times a week. I have healthy arms because I lift weights. I have been healthier on the inside because I have been eating whole foods and calorie counting. And I believe I will be healthier still after trying veganism.

Ultimately, both my Mom and I feel that the most important change to our diets that we can make will be reducing our intake of processed foods. And since meat and dairy are often hyper-processed by the time we consume them, they are to be avoided more than other foods. This is an experiment.

Today's experiment went like this:

Breakfast: 1cup of Cheerios with 1/2 cup of almond milk
Lunch: Orange Quinoa and Black Bean Salad
Snack: 2 Vegan Oatmeal Raisin Cookies (okay, 3)
Dinner: Another cup of Orange QBB Salad

So I think I did pretty well. Except for the whole giving in to my sweet tooth and making a batch of cookies thing.

My mom had a harder time because she didn't have time to cook and just had plain beans and rice to eat for lunch and dinner.

It tastes much better than it looks, I promise!

I've come to believe that all diet success comes down to spices. I love experimenting with flavors; the more flavor, the better. My QBB Salad was awesome, but only because I added a ton of flavor. This is actually the first time I've ever eaten Quinoa (pronounced keen-wa; I went around saying kwi-no-ah for days before people figured out what I was talking about). By itself, it is not that flavorful, close in consistency and taste to overcooked rice. But I added orange juice, chili powder, tumeric, salt, pepper, green onions, and Tony Chachere's and BAM--awesomeness.

Even my nay-sayer husband said it was delicious.

My downfall today came when I went to Whole Foods fifteen minutes before closing. This sent me into panic mode, which is never a good mode to shop in. I got the fresh fruits and vegetables on my list, some lentils, some millet (pronounced mil-it, unless you are French and then you can probably get away with mil-ay), more quinoa. But then I started just kind of snatching things off the shelf that said "vegan" on them.

I ended up with a bunch of processed vegan foods, which, if I had really thought about it, are not all that essential to this diet, but seemed like must-haves in my supermarket-sweepstakes moment.

Here is the rest of what I bought (the ones with stars by them were actually on my vegan essentials shopping list):
- Vegan Mayo * (I have had unpleasant experiences creating my own mayo when on the no-iodine diet; turns out I have an aversion to the smell of vinegar.)
-Vegan Butter * (I don't actually eat a lot of butter, but I figured I might need to cook with it and I certainly am not about to churn my own, even if it is made from soy.)
-Almond Dream No-Dairy Ice-cream (whoops)
-Gluten-free Organic Graham Crackers (I had a coupon and it didn't occur to me until later that regular graham crackers are vegan anyway.)
-Canned black beans (boo, canned food)
-Frozen mixed veggies * (fresh is wonderful, but goes bad too quickly)
-unsalted cashews *
-2 Amy's frozen burritos

So I guess I'm covered as far as vegan junk food goes. Sigh. It doesn't really make sense to cheat on my regular diet so I won't cheat on my vegan diet, but again, I plead sheer panic and flashy-label brainwashing. At least most of the junk I bought is junk that lasts forever. I'll start with all the fresh stuff.

Cheers to all you vegans for letting me hop your bandwagon!

I'll let you know how I'm feeling six weeks from now....

Is There a Cancer Conspiracy?

Does Corporate America Secretly Want You to be Sick?

Sounds pretty Orwellian right? I'll admit I've been reading manifold dystopian novels lately, but that isn't the only reason a cancer conspiracy, or really an overall keep-people-sick conspiracy, is beginning to sound plausible to me.

When you are diagnosed with a disease, one of the first things you go looking for is a cause. "Why me?" you wonder. In my case, the doctors explained it away as genetics (I have a strong family history of thyroid cancer). But before they knew about my family history, they basically shrugged their shoulders. Like it doesn't matter what the cause is as long as there is a treatment. Why prevent what can be fixed via expensive medical procedures, most of which are not covered by insurance?

But it is human nature to seek answers, and if you can't blame your genes, you usually blame yourself. Why didn't I eat more superfoods? Why did I microwave so many plastic dinners? Why didn't I exercise more? After all, the media tells us that these are the quick fixes to obesity, diabetes, heart disease, cholesterol, etc., so why not cancer? You may already be thinking these things, but if someone else dares to suggest that your bad eating caused your cancer, you want to slap them.

This is a dangerous road to go down. No one deserves cancer. And everything we consume, down to our drinking water, has a certain level of carcinogens in it. So who is to say whether that strawberry poptart was the last straw, the thing that told your body it couldn't win the fight?

HOWEVER, what if we really are slowly poisoning ourselves? What if poptarts (or candy bars or hamburgers or cheese fries, etc.) are not just "junk food," but food filled with addictive chemicals and cancer-causing animal proteins and dairy?

The Forks Over Knives Theory

This is the basic thesis of the Forks Over Knives lifestyle changing documentary/ diet program. The idea that the foods we eat are not just making us overweight, but killing us with terrible debilitating diseases that are reversible, is what makes it different from the usual Jenny Craig, Weight Watchers, Atkins dieting phenomenons.

A lot of people see FOK as an extreme lifestyle. After all, it is essentially veganism. You are allowed very little animal protein or dairy (5% max). When my mom told me she would be giving up meat and dairy, my reaction was basically "Yeah right, crazy-pants."

I have had a strangely high number of vegetarian friends and roommates in my life and have never been tempted to give up meat myself. I don't consume a lot of fatty red meats, but I do eat a LOT of fish and chicken, which are HEALTHY, right? Hmmm..... Now I'm not so sure. Yes I believe people are naturally omnivorous. But it seems to me that even once-healthy and natural foods are no longer safe due to toxins, hormones, steroids and preservatives.

Here are the basic arguments of FOK:

1. The foods we eat, especially animal-based and processed foods (ABAP), are directly causing most, if not all, degenerative diseases.
2. These same diseases can be controlled, or even reversed, by rejecting ABAP foods and turning to a whole-foods, plant-based diet (WFPB).
3. The ideas that we need meat for protein and dairy for calcium are capitalist lies promoted by corrupt corporations who want us to buy their products. 
4. Food and health care corporations actually benefit from keeping us sick and have no incentive to promote healthy eating among citizens (globally). 
5. While genetics predisposes individuals to diseases (like me), whether the disease actually manifests or not depends largely on that person's diet. Hmmm.....

Their evidence includes:

1. The research of Dr. Campbell (nutritional scientist), who studied children in the Phillipines and found that those eating animal proteins got liver cancer while those who ate WFPB did not. 
2. The research of Dr. Esselstyn (breast cancer surgeon) who also conducted studies where WFPB patients did not get the same cancers as ABAP patients.
3. The combined efforts of these doctors, who now use and promote the use of WFPB diet as medicine for degenerative diseases. 
4.  Dr. Campbell's The China Study, a twenty-year survey of diseases and lifestyle factors in rural China and Taiwan that details the connection between nutrition and heart disease, diabetes, and cancer.
5. A half-dozen "reality patients" who are filmed while on the WFPB diet, and who lose weight, reverse diseases and eliminate medications.
6. Other studies mentioned in the film and an impressive list of celebrity/ expert advocates of the diet.

Now if you are like me, you are probably thinking something along the lines of NO WAY am I going to give up ice cream and sloppy joes for the rest of my life. Not even if I wanted to.

The typical carnivorous counterarguments to FOK and other veggie plans are:

1. Humans are naturally omnivorous (we have those nice shiny canines).
2. Humans need meat and dairy (why? because the government says so).
3. Everything we consume is carcinogenic (we're doomed anyway). 
4. Vegans are scary-thin skeletons who shove scary-gross pamphlets in my face (ack!).
5. Meat lover's pizza (yum).

Etc. And then there are whole lists of counter-counterarguments from veggies about world hunger, pesticides, antibiotics, natural resources, etc. 

When in Doubt, Cut Back on the Processed Foods

I am not entirely sold on FOK yet. But the notion of "consumercide" makes sense to me. If executives of Nestle and McDonalds and Kraft have infiltrated the boards that determine American health standards (the USDA, the FDA, the health pyramid, etc.), then of course we are going to be manipulated into making unhealthy food choices. We already are manipulated by commercials, deceptive packaging, and misleading labels like "Fat Free" and "Sugar-Free." Have you ever noticed those magazines where the front cover says "Lose 25 pounds!" AND has a picture of a new chocolate cake recipe on the front cover?!

There is no doubt in my mind that processed foods are bad for you. There is no doubt in my mind that animal protein and dairy are bad for you in excessive amounts, and that the processes used to raise and feed and kill these animals are suspect, if not inhumane and unsafe. There is also very little doubt in my mind that if I attempt to completely eliminate two food groups from my diet, for LIFE, I will fail.

However, I have signed on to do a 6 week trial FOK diet with my mom when she gets back from California. Already, I am a bit deterred by the strange, difficult-to-find ingredients in the FOK recipe book. It took me two hours to shop at Walmart, and I never did find brown rice syrup or tahini (which I now know is an Indian herb, NOT sold at Walmart).

This is not going to be easy. But, if I can truly eat my way to better health, garner more energy, lose weight and not have to worry about cancer recurrences, skipping that once-a-month burger might actually be worth it....

Ride for Life: 2012 Tour de Cure

CHANCES ARE YOU KNOW SOMEONE WITH DIABETES

Well I survived again! Today (Saturday) was the American Diabetes Associations big bikeathon, or as they like to call it, the Tour de Cure. I started doing this last year after my step-father-in-law Leighton told me about it. He has diabetes. Chances are, you know someone with diabetes. Or have at least sat next to one in the waiting room of your endocrinologist’s office. In fact, many people with diabetes also have thyroid problems as a result of their disease. Leighton is on a higher dose of Synthroid than I, and I have no thyroid!

The Tour de Cure is AWESOME even though it is extremely difficult and SOME family and friends (AHEM) told me I was crazy to do it. The SOLE reason this event is a matter of survival as opposed to just fun exercise for a good cause is because some crazy person decided to hold the Dallas ride at the end of July. July 28^th actually has no significance to the ADA. In fact, the Tour is a nationwide event and many states cooler than ours hold their event from February-June and August-October, any of which would have been far better than JULY. I clicked on about thirty different locations on the event map and found only ONE other location that rode on July 28^th, and that was in Hillsboro, Oregon. Guess what the high in Hillsboro was today. 76 degrees. 76!!! Our high was 106.

If the ADA had a suggestion box, I would be sending a lot of letters. Anyway, I wanted to do 64 miles this year, but A) did not ride further than 35 miles when training and B) did not want to DIE of heat stroke. If it were in winter maybe. New York and New Jersey have rides in October. How does that make sense??

YOU CAN STILL BE A HEALTHY PERSON (WITH A DISEASE)

Okay enough griping. Tour de Cure really is a fun and fantastic event. It is held at Texas Motor Speedway, and while I am not a car racing fan, it is pretty cool to bike a round such a big fancy track. They let us do a lap around the track and then the rest of the ride is along 1-2 lane country highways next to fields of sorghum and sunflowers. There are two rest-stops at the 10 and 16 mile marks, where wonderful volunteers give you food and water and cold towels and sunscreen and mist you with sprayers and let you sit in the blessed blessed shade while you catch your breath. To the right is a picture of the starting line. I am in there somewhere.

And once you survive the event, you get to sit in more blessed shade and drink more water and eat and listen to a band and visit a million booths giving away free merch and massages. I’m still mad at myself for not getting a massage while I was there.

Oh and I got to ride next to a guy on a penny-farthing bike for a while (Pictured left. The bike, not the guy). So if that doesn't raise my cool status I don't know what does.

This year I rode 32 miles in 3 hours and 8 minutes. That includes stopping 3 times to rehydrate, eat, sit, get sprayed in the face with water and use the port-a-potty. I completed the last 10 miles in 33 minutes. Both of these are personal bests for me.

Yes, I am tooting my own horn. But this is a HUGE improvement over last year, when I felt a bit weak and goofy. I took up bicycling as a hobby after my cancer diagnosis because it makes me feel absolutely and solidly alive. Even though you can feel perfectly healthy at the time of your diagnosis, cancer threatens to take away all those feelings of health, security, strength, independence. Until you are convinced that you ARE the cancer. That it has taken over your identity and no one (including yourself) will ever see you as a unique, productive or desirable individual again.

Cycling is my way of countering those feelings. Being outdoors, using all my senses at once, I become healthy again: feeling the strain of my quads as I push forward, hearing my breath pushing rhythmically against the air, smelling the sun-soaked earth and my sun-soaked skin, tasting the life force that is icy cold water and seeing myself reach each goal I set, go a little further than I thought I could. Those experiences have been everything. Someone so alive cannot be sick. Someone so alive cannot be defeated.

Last year, I was mostly in the back and would just try to follow someone who didn’t look too muscular. I did not finish until about 1:30, meaning it took me about 5 and a half hours to complete. The moment I remember most distinctly is finding myself along on a country rode and having a car full of teenage girls drive up next to me, cheering me on, saying “You can do it!”as if I didn’t quite look like I was going to make it. No one would say “You can do it!” to Lance Armstrong. He KNOWS he can do it.

This year, I would pick a muscular person, the kind with the square calves and bulging biceps, and tell myself to follow them, only to end up PASSING them! And I kept right on passing people. I definitely got passed, and the ride is not meant to be competitive, but I wanted to have a decent time and I think I accomplished that goal. I found myself going speeds I have never been able to maintain in the past.

Here is what I suspect were the keys to my cycling success:

1) The whole crowd aspect of a group-ride is super motivating.

2) I kept humming “Situation” by Yaz in my head, a strangely excellent beat for exercise. Mostly I was just singing “move out” over and over, especially when going uphill.

3) AND I just really wanted to get out of the heat. So I guess if the event WERE in October, I might not have been as motivated to ride quickly.

DONATE TO SUPPORT THOSE WITH DIABETES

Here is my “Sick people should stick together” plug: It feels good to help a cause even when it’s not your own. I have raised $355 so far. If you would like to donate, there is still time! They are collecting donations through August. Just click the icon below if you want to show your support for those with Diabetes and promote the research and awareness of this disease!

DREAM BIG THYCA CYCLERS

The next step is to start a THYCA fundraising event! How amazing would it be to have something comparable to the Tour de Cure?! I have not given up on my dream of a THYCA cycling team and eventually a bikeathon.

It reminds of Pollyanna dreaming of the bazaar:

“Picture it. Darkness. And out of the night,

50 bicycles appear moving down the square.

And hanging from their handle bars, two hundred,

TWO HUNDRED, gorgeous Japanese lanterns!"

Be Your Own Health Advocate

I credit this title to my friend Donna, who works in health care. I wanted to write a post cautioning against blind faith in doctors and diagnoses and this sounds much better than "Don't Trust Your Doctor." Chances are your doctor may be a kind wonderful person with all your best interests at heart. My mother-in-law, one of the nicest, cheeriest people I know, is a doctor. But you should still be your own advocate when it comes to your health.

What Do I mean by Health Advocate?

Take a proactive approach to all stages of health and illness: prevention, diagnoses, treatment, and again prevention. Take a daily vitamin or two. Eat more fruits and veggies. Exercise. Research your symptoms. Go ahead, WebMD that sucker. Just be sure to write down all your symptoms first, so you have in mind the difference between what you are actually experiencing and 101 more seductive sounding diseases you might have, according to your inner hypochondriac. If you aren't incapacitated by your illness, maybe try a few home remedies first. And if you do make an appointment with your doctor, bullet list symptoms and questions you want to discuss. Mention your relevant family history two or three times. If your Aunt Myrtle recently tested positive for such-and-such, go ahead, ASK if you should also have the test. It never hurts to ask.

Your Doctor is Not God

If you are like me, you have probably been giving your doctor both far too much credit and far too much responsibility.It is only over this past year that I have reexamined my perception of doctors. Typically I only go to the doctor when I believe something is wrong with me. I go the appointment believing that if I list my symptoms and the doctor pokes and prods me, they will unequivocally know what is wrong with me and how to fix it. WRONG. Doctors are human and thereby make mistakes. They are working off two things: their own medical expertise and the context you give them. Even the best of doctors may never have encountered, experienced or researched your condition and the fewer details you give them, the more it is like guesswork.

Why My Doctor Missed My Cancer

One of the greatest conundrums I have met with since my cancer diagnosis is the question of why I was not diagnosed sooner. Obviously, my doctor and I were both at a disadvantage, given that neither of us knew about my family history of thyroid cancer. I have two aunts with thyca, which I found out only after my throat sonogram. However, I did go to my PCP 6 months before my diagnosis, specifically for the purpose of getting tested for thyroid conditions. My mom insisted that a faulty thyroid could be the source of the many health difficulties I was facing. So I had my blood tested for TSH levels (Thyroid Stimulating Hormone) and everything came back normal. 

This is the part that confused the heck out of me. How could my test come back NORMAL? I had severe Hashimoto's Disease, a 3cm malignant tumor, and 9 malignant lymph nodes. I must have been (and certainly was displaying the symptoms of being) severly hypothyroidic at the time I was tested.

Well, the other day, I found the answer. Or at least as close as I am ever going to get. I was browsing the internet for articles on Hashimoto's and found this article on TSH testing. (The article is actually a series of 8 slides, and well worth reading in full. This links to slide #6.) Well, guess what! According to Mary Shomon, founder of Thyroid-Info.com, "Currently, most laboratories in the United States still use the old 0.5 to 5.0 range as their normal reference range for the TSH test."

So what, you ask? "New" guidelines, recommended by the American Association if Clinical Endocrinologists, state that anyone with a TSH level between .3 and 3.0 should be flagged for further testing and treatment. These standards were changed in 2002!!!! But today many doctors either do not know about these guidelines or purposely ignore them. I can't fathom why they would simply ignore them; too many sick people = inconvenient? The article goes on to say that the "AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now."

As long as these standards are ignored, people experiencing hypo and hyperthyroidism are not being diagnosed because they fall into the old normal range. Like me. My TSH level was a little over 4.0 (I'll have to check my records to find out the exact #.)When my doctor came back and said everything was fine, I just accepted it. I took her word for it. I can't help but wonder how long I would have gone undiagnosed if that dog had not bitten me. And how much further the disease would have metastasized.

 The moral of this story is to question everything. If your doctor says you are fine, check and double check. Don't be shamed into suffering a treatable illness! If you have a family history of thyroid disease or multiple symptoms, follow up your test with these questions:

If your doctor is simply unaware of the changes in TSH standards, you can help all their patients, by getting them the right information! This article tells you what to give your uninformed doctor.

If your doctor simply disagrees with today's TSH standards, find another one!

You can even circumvent a doctor altogether and order your own thyroid blood tests from MyMedLab:

• Order Basic Thyroid Profile: Thyroid/TSH, Free T4 (FT4), Free T3 (FT3), Thyroid Peroxidase Antibody (TPO), Reverse T3 (RT3)
• Order Thyroid Followup Profile: Thyroid/TSH, Free T4, Free T3
• Order Adrenal Stress: 24-hour Saliva Cortisol (4 collections) and DHEA-Sulfate

Doctors Forget What it Means to Be a Patient

Medical Degrees do not require communications courses. They Should. I absolutely believe that our health care system and patient satisfaction would improve if doctors had to take at least one course on communicating with patients. Hospitals and medical programs do, ironically enough, offer classes for patients on How to Talk to Doctors (but not often the other way around.) Too often patients leave an appointment confused or fearful when it could have been prevented. The thing is, you HAVE to be your own advocate, because your doctor EXPECTS you to be. Your doctor expects you to tell them everything. In fact, they probably anticipate hypochondriacs, while getting reticent introverts. If you go to the doctor with a suspicion, fear, question or purpose, but never voice it, how will they know?

Something else you may want to keep in mind is that doctors are motivated by money. We all are. Drug reps visit the same hospitals and doctor's offices weekly. They hold lunches in their break room. They leave behind little "freebie" presents of food, notepads, pens, mugs, samples, etc. If someone gives me something, I feel indebted to them. I'm not going to trade my ethics for a sandwich, and your doctor probably won't either, but when prescribing something for you, how likely are they to ignore the brand names that have treated them so well and now decorate their office or even write out your prescription? And of the dozens of times doctors offered me "free samples" of some new drug, I never once thought that maybe it wasn't such a good idea. That is might have more to do with convenience and ease than my actual health. Free is very seductive. 

Where it starts to cross the ethical line is when doctors start prescribing pills and treatments you DO NOT NEED. Like I said before, I have found countless forums on Hashimoto's Disease, where patients have been prescribed unnecessary thyroidectomies. A few of them questioned their doctor's suggestion, looking for second or third opinions, or seeking alternative treatments, but most do not even believe they have an option. They do not distinguish between doctor's words and doctor's orders.

Are You a Fully Informed Patient?

This is the question you should ask yourself every time you visit a doctor. There are a million and one things that I learned about my body, my thyroid, and thyroid care over the last year that I simply did not know before. The best way to be your own advocate is to be self-educated. I'll give you an example.

In an earlier blog, I talked about unnecessary x-rays, known to be a cause of thyroid cancer when delivered in excess. Today's dental standards recommend that patients receive only one diagnostic dental x-ray per year. Unfortunately, many dentists are indiscriminately prescribing these x-rays every 6 months!

The American Dental Association cautions that patient history, health, age, family history, risk and symptoms should all be considered when using x-rays as a diagnostic: "However, the dentist must weigh the benefits of taking dental radiographs against the risk of exposing a patient to X-rays, the effects of which accumulate from multiple sources over time."

Yet, BOTH my husband and his father were refused dental treatment because they refused to get a dental x-ray at their 6 month checkup. Obviously, something sketchy is going on here. And I suspect it is more fiscally motivated than anything. If you REQUIRE that all your patients undergo expensive albeit needless procedures, you make more money. Period. The end. 

Oh! And here is some fine print on the ADA website, you may not be aware of: you should be wearing a thyroid collar during these dental x-rays!!!! Their MouthHealthy website states: ". . .  a leaded thyroid collar can protect the thyroid from radiation, and should also be used whenever possible. The use of a leaded thyroid collar is recommended for women of childbearing age, pregnant women and children."

Did you know that? I didn't! I have been of childbearing age for sixteen years now and I have never once requested a thyroid collar!!!! Don't be afraid to do your own research. Yes, the internet is a tricky place to navigate. There is a lot of unsubstantiated crap out there, and you have to go through a lot of sources and know what to look for in order to find reliable information. Your doctor might even look at your list of questions and printed WebMD pages and laugh. But think of how much better it is to be an active advocate than a silent sufferer!