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?