Dealing with a Thyroidectomy Scar

6.28.11

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” –Kahlil Gibran

Working Towards Finding Peace With and Pride in My Thyroidectomy Scar

Scars can be a blessing in disguise. Or at least a distraction, which is something I need desperately right now since I am simply waiting to find out more about my cancer status and staging.

Scars are fascinatingly versatile in their meanings and value. The most interesting parts of a life can be mapped out in scars. On the most basic level they appear unequivocally undesirable. It seems strange to think that anyone would want their body to be marred, to have more imperfections than the ones they were born with. In film and literature, they are often the cause of major conflicts. The scar is how we recognize the bad guy in murder mysteries and westerns. It’s the sign of a tragic past in a former beauty. It’s a permanent reminder of something the protagonist is desperate to forget. Nathaniel Hawthorne’s brilliant short story, “The Birthmark,” shows how obsession with such imperfections can have dire consequences.

But hardly any of us get very far through life without acquiring a few, and once you have them, they become a part of you. For some, they become a kind of bragging right. Think of the famous scene in Jaws when the three men stick out their legs and expose their bellies, telling horror stories about shark bites and fights and sunken battle ships. In part, this scene is so memorable because many of us have experienced a similar bonding ritual: we sit around with a group of friends or a new beau and show off scars, telling taller tales than they probably deserve. I have a scar on my leg that I am actually rather fond of because the story behind it always gets a laugh. People have a natural affinity for storytelling, and in talking about our scars, we have the added bonus of re-affirming our survival.

But there are two kinds of scars that never get mentioned. Some are simply too visibly/visually painful for others. Noah and I spent an entire day of our honeymoon with a one-legged man and neither of us dared to ask about it. Others are a source of shame for the owner. The thyroidectomy scar falls in both categories.

No one brags about cancer scars. Before I was diagnosed, I heard “cancer” and immediately pictured adults with do-rags and bald children, piteous images of chemo’s effects. These are the people who get on the posters and make commercials. But you never see a woman showing off her mastectomy scar. Or someone with lung cancer showing off their lobectomy scar. So why not? Isn’t being a survivor something to be proud of? Why a ribbon or a t-shirt when the body itself is so clearly marked for having fought a battle?

I have many theories regarding the ideologies of women’s breasts and stigmas of lung cancer that I won’t go into here. Whatever the source, these scars come with shame, as does mine. And mine is quite visible.

The first post-op purchase I made was a scarf. Apparently, they are quite in fashion. Lucky me. I have never been fashionable. Possibly because I refuse to put more than five minutes a day into my appearance. Anyway, I am now tres chic because scarves are year-round accessories. I noticed this at the last school where I taught. So I bought some scarves and watched a dozen videos on how to wear them (I didn’t have a clue) and then had to buy different scarves because the heavy winter ones make it look like you are hiding something (which of course, I am).

There have been issues. For instance, it is really only fashionable to wear a scarf if you are using it to doll up an already cute outfit. Wearing a scarf with workout clothes looks strange. Taking a bike ride in a scarf looks strange. Wearing the scarf tightly around the throat so it covers as much as possible looks strange. Despite the scarves, I am still losing the fashionable v. strange battle. But it is better than the alternative.

I went to a check-up last week at the hospital. I figured it would be dumb to wear a scarf, because where else can freaky-looking scarred people belong if not at a hospital? But when I asked for directions from a hospital staff member, she took one look at my neck and said “Oh my goodness! That looks so painful! What happened to you?” I went into my appointment trying to hide behind my hair.

Then my surgeon drained some of the fluid from my neck, which I though greatly improved its appearance. So much so that I dared to meet a beloved family member (whose name I will not mention) at a store without a scarf. Unfortunately, her reaction was worse than the previous one: “Oh no! Cover it up! Oh my goodness, that looks so painful, cover it up!!” After peeling my self-confidence off her shoes, I bought two more scarves.

The inflammation has calmed a bit and thereby, so have the reactions. For the most part, I do not leave the house without a high-neck shirt or scarf. The few times I have, I have been met with pity, disgust, or uncomfortable curiosity. When I am not looking in a mirror or gauging the reactions of people around me, I feel it, pressing in on my throat like a velvet ribbon.

I know these things will fade with the scar, but I am dissatisfied. Why is this not a scar to be proud of? I will have it the rest of my life. In a prominent place on my neck. What I want is the courage not to hide this scar. I want to show it to other people and warn them. I want them to hear about the disease before they or someone they love is diagnosed. I want to say, “this is a mark of survival,” and have people nod in respect and show me their legs or expose their bellies. (Well maybe not bellies.)

Courage has consequences. Am I willing to face them?

Scar on 6.9.11:

Scar on 6.28.11:

My Terrible, Horrible, No Good, Very Bad Day (Thyroid Cancer Metastasis)

 Read with Caution

Today did not start out so bad. In fact, it started with what I thought was a bit of good luck. I heard back from my new endocrinologist (the other having fled the country) and got an appointment for tomorrow. Turns out the reason for this is not so good.

I hung out with my friend Meredith today. We ate lunch at Jason's Deli, played Scrabble (my favorite game) and went to see The Green Lantern (not as bad as I was expecting). I saw a missed call from my mother-in-law and called her back.

And now I am in Alexander's shoes, only Alexander was not an idiot who misunderstood his own diagnosis. Twice. I do not have stage 1 cancer. It was not limited to my thyroid. It is not behaving well and disappearing into the night. Apparently all of my lymph nodes were cancerous. ALL OF THEM.

I still don't know what this means, but it sounds pretty terrible to me. Horrible enough for me to sit in the grass in front of Movie Tavern crying my eyes out not caring who saw. So the numbers have changed. Spread of cancer: up. Chances of further spreading: up. Chances of recurrence: up. Chances of survival: down.

The fear is back and multiplying. My desire to rage at the world, at God, at everyone who didn't just find out that they could be dying, magnified. My head was barely above the water. Today I am drowning.

I want this journal to be a beacon of hope. Something for people to look to when they are feeling scared. But I also want to be completely honest about my experience. 

Right now I feel no hope. I feel scared and weak and completely WORTHLESS. Perhaps that is why so many authors recommend authorial distance. Did Poe or Hemingway ever just write in the moment? Out of raw, unrefined hate or fear? Sometimes it feels like they did. But maybe this is all gibberish because it comes more from what I am feeling than what I am thinking.

What I am feeling is very bad. It is despair, which, according to Marilla Cuthbert, means I've turned my back on God.

Well maybe He did it first.

There is No Therapy For Cancer Like the Great Outdoors

6.22.11

Today was my first post-op bike ride. I was feeling depressed and anxious this morning. After a week-and-a-half recovery I am ready to be productive again. But I still don’t have my health. I have stopped taking the pain pills, but still experience small bouts of pain and the constant sense of strangulation. Also, I’m not sure if it is the depleting hormones, but I have been feeling tired again. The kind of tired where I lay in bed trying to think of a reason to get up and even my bladder doesn’t seem like enough of an incentive. Where I yawn frequently and they come from deep within my diaphragm, causing my whole body to shudder.

 I stagger from room to room with an unshakable weight on my shoulders, knowing that if anyone asks something of me, I will fail. But no one has asked anything more of me than that I make a few pies today. So I decided to go for a bike ride. My biking partner is on hiatus this week and threatening to leave me for the cold unfeeling grotto that is Virginia*. So I went alone and it was the best medicine I could have asked for.

I love bicycling. I love everything about it. It is riveting. It makes my heart throb with joy and my veins pulse with life. It makes all of my senses open and expand so that they can drink in the beauty that surrounds me. I love the high-pitched whir of the metal tire spokes as they spin in the wind. I love the heft of the bike and the feeling of accomplishment every time I fasten and unfasten it from the rack. The way my thighs are suddenly “powerful” in a pair of sleek black biking shorts.

Getting back on the bike was like remounting a familiar and sturdy two-wheeled contraption. Biking again was like rediscovering myself as a part of the world. My first encounter was a majestic red-tailed hawk, who let out a single haughty peal before leaving his perch. At the first pond I saw a huge white egret, gleaming with an impeccable purity in spite of the sludge it was standing in, and as still and pensive as an artist painting the water. A large rabbit and I mutually startled one another, though I was a bit braver in my response. A frog hopped slowly across the path in front of me and croaked a sigh of relief when I passed. Several nonchalant squirrels ignored me completely, though one daredevil darted so closely I had to squeal my brakes and make a face at him. I thought to share a laugh about this antic with a stranger passing by, but he was too busy running to notice, his red face scrunched and preoccupied with the pain of meeting his goal.

I paused in two places. One was a wooden memorial with a plaque that caught my curiosity. When I was close enough to read the inscription “In Loving Memory of,” I was diverted by the throng of ants marching in and out of its cracks. Anyone who has studied Hemingway knows of the symbolic value of ants. They became especially interesting to me a few months a go when I was attempting to write a poem about them. So I sat down on a bench to watch them and enjoy all their human qualities.

Some of the ants are carrying things on their backs or in their mouths and some are empty-handed. Some crawl under an obstacle, others over it and others around it, although nine times out of ten an ant will observe and do exactly what the ant in front of it did. As they pass each other, they reach out their front feelers in a terse greeting, the equivalent of a Texan “how are you?”

The second time I paused was to alight on “our bench,” the bench that I have claimed in the name of Noah and I and our third-year anniversary picnic and endless love. Again with the mosquitoes. But definitely my favorite spot. In my mind, it is another Belize, though Noah has yet to see this. But because I cannot be there, “Belize” has become for me any place of natural beauty that calls to my inner sprite to be joyous and free. Places that fill my heart until I am overflowing with love for the world.

The bench faces a canopy of trees embracing across the pathway. Their arms curve and stretch towards each other, while their feet are firmly planted on either side of the concrete, as if they sense the danger of encroaching on the man-made. Even with patches of glaringly white blue sky beaming through, the shade is thick and cool. Large black butterflies and larger brown birds flit in and out of the branches like ghosts. The soft warm air that carries them settles on my skin like a mist. The orchard oriole emits a sing-song laugh, while the northern cardinal counts to four in plaintive peals. This spot is close to a waterfall, which provides a kind of lilting background music and constant rhythmic vitality. It is the life force of the forest, an unceasing reminder of existence like amplified breathing. It moistens the trees, the ground, intensifying the sharp musky smell of the soil and bark until I am no longer breathing air, but earth.

If I had but world enough and time, I might sit there forever.

*Having never actually been to Virginia, I cannot 100% say it cavernous or that the residents are particularly callous, but I can say with absolute certainty that it is bound to be colder than TX.

The Aftermath of Surgery: Post-Op Thyroidectomy Experience

6.8-6.10
"All this happened, more or less." --Vonnegut

Waking Up After My Total Thyroidectomy

I awoke in the recovery room. My eyes would not open for several minutes, struggling against the anesthesia. Voices and faces moved in and out like dreams. Then there was pain. Someone had set fire to my neck and chest. The flesh was peeling away to the sides, crackling from the inferno that was consuming me, eating away nerves, muscle, life. But no one was reacting and I could do nothing but scrunch my face. If I made a sound, I couldn’t hear it.

I guess the change on my face was enough, because a nurse came and shot cold liquid up my arm. Still, I began to panic. I couldn’t breathe. I couldn’t sit up. I was trapped in a broken, worthless body. There were bright lights and strangers and this horrible soul-devouring fire and nothing else. I don’t know how long this lasted, but I do remember the moment I saw my mom and Noah walk into the recovery room. I was still in pain, but I was going to live. These were people who loved me and they were smiling and as helpless as I was, they would protect me.

I don’t remember very much of that first day. The first room I was moved to was shared with someone who either liked watching TV or who was too weak to turn it off. All I remember about this room was the way the sound picked a my brain like a knitting needle and that I kept thinking I was in the hospice facility where I said my final goodbyes to my grandfather. At some point I was mercifully moved to a private room, for which I am eternally indebted to my mother-in-law, the doctor. If you are going to have surgery, try to get a doctor in the family first.

About every four hours the powers that be gave me pain meds and I thanked God for creating the person who invented them. Morphine gave me a terrible headache, so I switched to Percocet. There was an ice pack (which I didn’t feel) and a thick white bandage around my throat, much like a neck brace. It felt as if this bandage were the only thing keeping my head attached.

I had to sit at a 45-degree angle for the next two nights. I knew, vaguely, that I had visitors and felt a kind of desperate happiness to have people I knew and loved with me. For the first day I was intensely afraid of being alone. The feeling was very animalistic. I was wounded and fragile and sure to fall apart at any second. I could not speak at all, but wrote as many notes as I could.

Going to the bathroom became a huge ordeal. I had to call for a nurse, wait for them to unhook me from the wall, hold on to them as they pushed my IV stand into the bathroom (which some idiot designed with a speed bump) and wait for them to slide the door closed. When I was done, I had to pull a red cord next to the toilet and wait for them to return for me. All while not entirely conscious and still attempting to hold the flaps of my hospital gown together. As soon as I had any strength, I put on pants and began practicing bathroom independence. These were my first small steps towards feeling human again.

I did not eat the day of the surgery. I drank maybe a cup of juice. To swallow, even to breath deeply felt like suffocation. I have read descriptions of the aftermath of an endotracheal intubation as a “sore throat.” Not only is it sore, but it feels like it is constantly on the verge of collapse. Instead of a trachea, they left me with a plastic flexi-straw, and every tug of air is another crease in the plastic closer to not being able to breathe again. Two weeks later, this feeling has not yet completely disappeared. I can lay down, but in doing so the weight in my neck sinks and though I am no longer suffocating, air is thin. My heart reverberates more loudly than before. It pulses its way up my chest and into my throat. My scar hugs my neck tightly, like a warm hand that is always there. Whether it is threatening to choke me or holding me together varies with each day.

The second day I ate jell-o and drank juice and a little broth. By the third day I progressed to cream-of-wheat. The liquid diet lasted about a week, at the end of which I was ravenous.

I spent two nights in the hospital. The first night was terrible. Nurses came in every two hours to check on me, no matter the time. And by check on, I mean call my name loudly and tap me awake, then squeeze my arm in a blood pressure cuff or draw blood. Not things even I can sleep through. Plus I was still forced to sit upright and wear the boiler-room compression sleeves on my legs. If I got much sleep, I didn’t feel its effects.

By the second day, I did recover my voice. My surgeon stopped by to check on me and removed the bandage. I was loath to let it go. I felt exposed, vulnerable, and when I got the nerve to glance at a mirror, ugly. Here is a photo from the day after surgery:

However, I was still groggy and more preoccupied with pain than looks, so my scar was not yet an issue.

The surgeon asked me to “eep” to make sure my vocal chords had not been damaged. After I succeeded, I was instructed to try to talk with more frequency. Within a few hours I could make myself understood, albeit in a froggy and incomplete voice.

I began to feel so normal that I made a mistake. I decided I did not need the pain medication. Nurses would ask so casually and there was a pain button available to me at all times and I started thinking about pill-pushing and addiction and how I was feeling fine and then suddenly the pain was back and spreading through my whole body. The burning and straining in my throat, and now a throbbing in my head and an aching in my back and shoulders and a gnawing in my stomach. When the doctors returned to find me in a fetal position, rocking, they (rightly) acted like I was a moron. Do not be brave! Take your meds!!!! I ended up being on pain medication for a total of eight days.

On the third day, they released me. Again, it may sound dramatic, especially since I had a nice private room with a view, but it truly felt like leaving a prison. Hospitals have no privacy. No freedom. The food is hardly an incentive to stay. Getting the IV taken out of my arm was the click of handcuffs coming off and my first opportunity to put on a shirt. Finally, I was wheeled out of the hospital in a chair (a legal precaution) and handed my walking papers (instructions on how to care for myself over the next few weeks).

Unbeknownst to me, this candid was taken of me during my hospital visit. The look on my face says everything:

I am home again, in my dark little apartment, and it has never felt more like home.

Pre-op Preparations for My Total Thyroidectomy

 What to Expect Before Your Total Thyroidectomy

6.8.11

Two equally awful questions entered my mind when I learned I was to have surgery: what if I wake up and what if I don’t? The first being during surgery and the second being ever.

As the appointed day got closer I began to panic. I don’t think this was apparent to anyone other than my husband, especially since it manifested as a kind of morbid preoccupation with preparing my end-of-life services. As previously mentioned, I wrote a will. This was especially depressing because I do not have anything of fiscal value to leave behind. Just emotional value. I wonder how many other people have written wills bequeathing stuffed animals and favorite books and photo albums. But I figured this would make things easier on my loved ones in a small way and serve as one last gesture of love to the people I am closest to. I asked a few friends what they wanted, but even I felt creepy doing this. I went to the bank and arranged a POD (payment on death). I told my husband some final wishes. I read a last book. Wrote a last poem.

But none of it brought any relief from the fear. I’m just not ready to die at this point in my life. It is far too unfinished.

All of this probably sounds over-the-top dramatic to some. And it certainly proved to be unnecessary. But I want to be completely honest, no matter how much of a fool I seem. If there is anyone out there who is about to undergo surgery and scared shitless and constantly preoccupied with the possibility of dying on that operating table, you are not alone. Fear is not to be desired or encouraged, but in my opinion it is also not anything to feel ashamed of.

Other than fear, the emotion I have felt most intensely during this ordeal is shame. Shame for being so afraid and for making such a big deal out of this little disease that so many doctors and friends and family members have waved their hand at in dismissal. I won’t go into another diatribe on my frustrations for how this disease is perceived just now, but I know, from reading what other thyca patients have written, that this is a problem for many.

I felt shame prior to being diagnosed. I felt shame for spending so much money when I didn’t have any, for wasting everybody’s time just so I could get a little peace of mind. Then when it turned out it wasn’t all in my head, the shame grew. What had I done? What had I eaten or not eaten? I once smoked half a pack of cigarettes on my twenty-first birthday (and proceeded to vomit profusely). I microwaved food in tupperware despite all the warnings my mother had given me. I lived off microwavable foods for most of my life when I could have been careful like my no-artificial-preservatives friends. I certainly didn’t exercise as much as I should.

The doctors blame my genes. They said there were no other risk factors but family, something I could have no control over. But the thought is still there. That if I had just tried to live a healthier lifestyle, I might have avoided all this.

And why didn’t I know about my family? Did they too feel ashamed? So ashamed of the stigmas associated with cancer, with being Diseased, that they didn’t even warn their own family members about it? I don’t blame them. It probably never occurred to them that this would be something other women in the family should look out for. But maybe in their efforts to forget that they had once been cancer-patients, they lost an important opportunity to raise awareness.

The shame is ongoing. I feel shame about what is happening to my body. About my hormones and cold spells and weight gain and scar. About becoming drug-dependent to live. About costing so much money, feeling weak, and still being afraid, even after I survived the surgery.

The surgery is again something that I feel the need to document in potentially irritating detail so that, if another thyca patient reads this, they will know a little more about what to expect. So here is my pre-op experience of the total thyroidectomy:

I was told not to eat or drink anything after midnight the night before. This is easy enough, but the instructions about trying not to chew or swallow made me nervous. I’m a tooth-grinder in my sleep, especially when stressed, and was told that these movements could cause the gastric juices in my stomach to start-up, which is apparently bad. I also had to clean my throat with Hibiclens the night before and the morning of surgery. This worried me too, because I had always thought that hospitals do the sterilizing and hygiene practices. I was worried when, just before bed, I read the directions on the box and realized that I needed sterile swabs to apply the solution. We ended up getting by with clean washcloths, but it certainly felt like a risk.

I arrived at the hospital a little after 5am with my mother and husband. My father met us there. I cannot express how much of a difference it makes to go through this with loved ones. Do not go through this alone if you can avoid it. We went through the main doors and into the Patient Registration area. I told the nurse behind the counter my name and she had me sign a sticker and placed one of those ever so fashionable wristbands on my arm. I expected more quizzes and was not disappointed. Only, they added a question: what are you here for? Things felt very surreal around the fourth or fifth time I said “My name is Mary, I was born in 1984, and I am here for a total thyroidectomy plus lymph node dissection,” like an automaton.

Before the quizzes was a brief wait period. The hospital is alarmingly busy at the crack of dawn and so my family and I chose to sit outside the waiting room in a ring of comfy green sofa chairs. We were given a brochure that explained how my family would be able to monitor my progress through the procedure on a TV. I would be given a code and the display would say when the procedure began, how many minutes were left, and when I had moved to the recovery room. Though the chairs were placed in a social circle, the distance between them and enormity of their size actually made it quite difficult to have a conversation. I gave my mother a synopsis of the last book I had read, Life of Pi, which I highly recommend. Next to The Book Thief, it is the best book I have read this year.

After maybe fifteen minutes, we were moved in a group (four patients and their accompanying families) to private waiting rooms. There, we had just enough time to start a card game, when a nurse came in and gave me a hospital gown and pair of socks. This ended the game because nobody wants to play cards with their ass exposed, even with family. The gowns were in an appropriately hideous pattern of green and white stripes with blue targets. I can’t imagine any other use for this fabric. That it was ever created in the first place is a mystery. If it were made into prison uniforms, there would surely be some kind of “cruel and unusual punishment” protest. But by the time patients are deprived of their clothing, they have very little privacy or dignity to protect. Seriously, look at this fine gentleman to the right. Even he can't make a hospital gown look dignified. I would be very interested in a sociological study on hospital gowns that compared the pre-op contentment of patients in these eyesores and that of patients who were given, say, soft-blue terry-cloth gowns. Surely the operations themselves cost enough to cover the difference in expense. The socks were nice though. Thick, gray and grippy.

I spent the next fifteen minutes talking to my family, trying to distract and be distracted, and constantly pulling at the gown and checking to see that I was not in any way exposing myself. Then a nurse came in and began reviewing my medical history and medications aloud. She asked a few questions and attached an IV to me. Despite the larger needle, it was not at all painful and only felt strange when a cool liquid began flowing up my arm. Then two other nurses came in and wrapped my legs in large white compression sleeves. This actually freaked me out much more than the IV, because I was now attached to the gurney with no chance of walking. A heavy machine was no appended to the end of the bed, which alternately pumped up one leg and released it, then the other, all while making Darth Vader hissing noises.

The nurse came back and gave me morphine, comparing it to a “shot of tequila.” Not to discredit her, but her analogy was a bit off. It felt like cold liquid shooting up my arm, a bit of numbness, and then nothing. Maybe I’ve been drinking the wrong brand of tequila, but I don’t think I’ve ever had a margarita that knocked me over the head like a baseball bat. There wasn’t any pain, but there also was no fuzzy warm buzz or giddiness or really, anything. I don’t even remember saying goodbye to my family. They say I did it, that I gave them hugs and kisses and waved and even spoke, but I don’t recall a second of it.

The next moment I remember was in the operating room. I was being moved from the gurney to a long flat metal operating table. This was incredibly frightening because I felt that I had no control over my body, my sight was limited by the large insect-eye lamps glaring above me, and I couldn’t entirely understand the voices and faces around me. I had just enough time to panic about being awake before drifting out of consciousness again.

There Is No Good Cancer

5.25-6.7

At Some Point In Your Thyroid Cancer Journey, Some Idiot Will Tell You It's the "Good Cancer"

There is a kind of character that appears in literature simply to test the other characters. This may not be their sole purpose, but it is often their most significant one. They are in some way deformed or helpless, in need of sympathy, help, a kind word. The other characters in the story are in turn defined by how they react to that character, how well or poorly they treat them. I’m convinced this needs a term: reflective character/ mirror character would work. This is what keeps coming to mind when I tell people I have cancer. How will they react? How does their reaction reflect on them? How does it reflect on me? How does it reflect on how they feel about me?

Of course, I’ve never really been on their side of things. I have never had a close friend or family member tell me they had an incurable disease. People simply got sick and died. There was no need for an announcement. But to look at me, I look like a healthy, somewhat typical 27-year-old. Nothing disease-like about me, and the incurable stuff is mostly mental. So unless I tell people, there’s no way they could possibly know I have cancer. With my closest friends and family, I told them on the phone. After all, I was at work when I found out. Others found out via word-of-mouth or text message. So the only face-to-face reactions I got to gauge were the ones of people who had only known me a short time and not on an intimate basis.

I guess what is really important is not whether this changes how other people see me, since I have no way of really figuring that out, but how this changes how I see me. I don’t feel like someone with cancer. I don’t look like one. I don’t want to be one. There are no benefits to cancer, despite my joking about marathons and free ice cream. To put it in the immortal words of my best friend: “It just sucks.”

Maybe I will get a few good stories out of it. I do seem to have a basis for a new blog. But when you are told something as frightening as “you have cancer,” you want it to MEAN something. To be significant. Life-altering. The kind of motivation you needed to turn your life around and start saving the world, one small child or puppy at a time. The final push to get out that novel you’ve been holding back on or take that trip to Uganda where you finally build that schoolhouse. I mean, now that the worst has happened, I should no longer be afraid, right? I should be able to face life with a toothpick in my mouth and a gleam in my eye and a mean right hook.

But the garbage still needs to be taken out. And I have bills to pay and a husband who might be a little miffed if I join the Peace Corps just now and I’m just as terrified as ever if not more. Definitely more. Because in additional to the normal rat race, I’ve now got things like surgery and radiation pills and a life dependency on medication to look forward to. Sure, maybe spiders don’t hold quite the same threat they used to (although the prospect of one touching me still makes me shudder). And maybe jumping out of a plane doesn’t sound quite so idiotic. But essentially my life and self are the same, with all the original flaws and bumps and chaos, and cancer is just the added bonus. Like winning the least desirable lottery. Who wants pancreatitis? A shiny new gallstone? Step right up and get your leukemia!

I find that my frustration with the lack of oomph and fanfare surrounding my new title of “cancer patient” is doubled by the fact that I have the “good cancer.” Now let me clarify: THERE IS NOTHING GOOD ABOUT CANCER. And there is certainly no good cancer. But when it comes to thyroid cancer, or “thyca,” well-meaning doctors and family and friends and strangers and people sitting next to you in the waiting room who are both bored and nosy will tell you, if you are going to have cancer this is the kind you want to have. (Yay.) Because it has a very high survival rate. It is treatable. Thyca patients do not undergo chemo. They do not lose their hair. Recurrence of the cancer is rare. In white women under the age of 30 (me) it’s practically like getting a pap smear. So they say.

Which is great. I mean, I really don’t want one of those recognizable cancers with the ribbons printed on milk bottles and SUVs. I don’t want any cancer. I just think that people sometimes try a little too hard with this silver-lining shit. To the point where you end up feeling like a moron for being afraid at all. For even using the C word. I mean, after all, it’s only THYROID cancer. Hardly a cancer at all. The hangnail of cancers. Oh, did poor bitty Mary get a paper cut? Does she need a bandaid?

Sorry for the excess sarcasm. It isn’t really that I’m trying to live this up or reap the rewards (if there are any) or throw a pity party. I just want someone out there to nod their head, put an arm around my shoulder and say, yeah, that sucks. To acknowledge that, while I am likely to survive this with a little more than a scar on my neck as a souvenir, I am still going through something terrible. Something frightening. And most importantly, something significant.


So here's to you, thyca patients: YOUR CANCER SUCKS.

The C Word: My Cancer Diagnosis

Finding Out You Have Cancer is Devastating

5.24.11
They called me at eleven. From 8-10:30 I gave an exam to my seventh-graders. Not a single one of them was still working on the essay portion after 10, though I tried to encourage them to do so. Instead they doodled, stared at each other, picked their noses with pencils, teased me with questions they knew the answers to, raised their hands only to say “nevermind” when I got there and wrote overly optimistic A+s all over their tests.

After collecting all the tests and saying goodbyes I decided to grab lunch before starting my grading stack. I went to Whole Foods for sushi. I got a Greek salad for Carol. I talked to Noah on the phone and ignored a call from the doctor. I decided to wait until I was back in my office to return it. After all, I couldn’t get bad news at work. No one would call to tell you you have cancer while you’re at work. I listened to the message from Dr. K: “I’d like to discuss the result of your biopsy with you when you get the chance. Please call back when you get this. I’ll talk to you soon. Bye!” All very upbeat. A friend calling to say hello. To say, geez Mary, chill, will ya? I told you there was nothing to worry about. You can breathe now.

I call back. They’re out to lunch. I call my mom and get her machine. “Hey Mom. Well, the doctor called. I don’t know anything yet though cause I missed it and they’re at lunch, but I thought I’d call and ask you to pray with me before I call again cause I’m a little nervous. Anyway, keep me in your prayers. Love you.”

I check my email. I call back again. This time I get Dr. K: “Yes, well Mary, I wanted to talk to you because we got the results back from the biopsy and they tested your nodules and they are both cancerous.”

A bomb explodes. Shrapnel punctures my heart. My lungs. My eyes. My bowels reel from chemical poisoning. They wriggle like worms in the rain. Every part of me is trying to leave. Abort! Abort! This body is contaminated! This vessel is leaking! It’s inside the house! RUN!

Nothing can prepare you for that first thought. All the whatifs and maybes and couldbes and ifthens are just simulations. You enter the battlefield alone. And it doesn’t matter how hard you trained, there was already a sniper waiting. No matter how long you studied, you can’t change your grade. You can’t try harder or do it again or get back on a horse, because those words cannot be erased: I. Have. Cancer.

I’m not sure what the normal stages of grief are for the discovery of an incurable disease. I’m sure they are bulleted and numbered on various websites. My first feeling was of despair. Of having been completely and utterly defeated by the game of life. When your opponent says “I win,” you don’t keep playing. It’s over. There’s no second place. You just stop and admit defeat graciously.

I certainly was not gracious about this defeat. I burst into tears. (Judge me if you must.) I listened to Dr. K’s concerned voice ask me if I was alone, if I had someone there, but it seemed to come from far away. I controlled myself enough to make an appointment for 3 o’clock and hang up the phone.

Then I wept. I indulged in the almost instinctual "why me?" thoughts. I called Carol and wept in her arms. I called my mom and asked her to come pick me up and wept. I called Noah and asked him to meet me and wept. And then I stopped weeping, because, thankfully, even the saddest souls do not have the capacity to cry forever.

Then I made a series of bad jokes. I inherited a knack for puns-that-make-people-groan from my dad. These are great in uncomfortable situations, like when you have to tell someone you have cancer: “God sure does have a terrible idea of a punch line.” “Yeah, you'd think I'd at least get a free one of those ribbon bumper stickers out of this deal, but they want me to pay for one.” “Boy this sure is the crap-can of cancers. Where is my marathon? Where are my free t-shirts and support groups?” “I figure God owes me now, so I'm investing in lottery tickets.” “Well, I’d say things can’t get any worse, but I don’t want to give anyone any ideas.”

And these were just on the way to the doctors. Now initially, Dr. K’s accent and my deafness led me to believe that I had medullary thyroid carcinoma, a cancer with a much lower survival rate than papillary thyroid carcinoma, which is what I actually have. This and a few other matters, like what “survival rate” actually means, were cleared up for me in that first appointment. We left Dr. K’s office feeling so optimistic that we went out to IHOP. Also we were hungry. I quipped all through dinner, threatening to cut people out of my will and telling Noah he’d have to let me pick the movies from then on.

I have never seen so clearly a divide in my personality. The easy sarcasm and goofiness felt like (was?) a façade. Because, after cancer, the part of me that continued to put on a good face, does so out of habit. But I am lost every time they leave. Alone, I am insecure, faithless, angry, “the wretch, concentred all in self” and being such a self, my greatest enemy.

This body is not mine. This smile is not mine. I am waiting to leave the rabbit hole.

The Day Before Cancer: My Fine Needle Biopsy

5.23.11
Running out of miracles. It is exams week, and a day when I do not have to give my exam, but even with no responsibilities to fulfill I took the day off. My appointment would be at eleven. A fine needle biopsy. Jenny and I had looked up pictures and descriptions, none of which were comforting. A giant needle was going to be shoved into my neck. Oh well. I’d live, as long as they told me I was cancer-free. Since I am already on edge, I decide to spend the morning paying bills and sorting through my overloaded inbox.

My apartment is about a five-minute drive from the hospital, and that’s only because of traffic lights. You could walk there in ten minutes easy. I leave about twenty minutes before my appointment, then panic, realizing I have no idea which of the monstrous, towering beige buildings contains the radiology department. I circle the parking lots as quickly as I can without running over pedestrians, craning my neck upwards at the building numbers. It begins to rain. With ten minutes left, I park the car and run for the nearest building. Luckily these things come with posted indexes. I should be in the main hospital building, page 208. I run over curbs and down driveways, past the free valet parking (damn), and into the lobby of the hospital.

Behind the information desk are elderly ladies in green, one or two of which might escape notice. But to be confronted by six or seven deceptively identical white women with white hair wearing truly identical short green lab coats is rather unnerving. They are volunteers who speak in chorus and check with each of their cronies before delivering a definitive answer to anything. But nice and smiling and eager to help. This desk of greencoats send me downstairs to a second, smaller desk of greencoats, one of whom asks me if I have an appointment.

ME: Yes, I do. For a biopsy with radiology.
GC1: Hmm, yes. Radiology. And what is your name?
ME: Mary Noon.
GC1: Your last name, dearie?
ME: Noon.
GC1: (a bit impatiently now) Your name.
ME: Noon. N-o-o-n. Like 12 o’ clock.
GC1: Yes, but I want your name, sweetheart.
ME: (a bit impatiently as well) Yes. That is my name.
GC1: Noon? Noon is your name?
ME: Yes. My last name.
GC1: Not the time of your appointment? Oh dear. How funny. (Embarrassed laughter.) I thought you were telling me your appointment time.
ME: (a bit nicer now) No. Ha-ha. That’s my name. A bit strange, I guess.
GC1: (to another GC) Betty, this young lady’s name is Noon. Like 12 o’ clock. Isn’t that funny? I thought she was telling me the time of her appointment.
GC2: No kidding? Noon. How funny.

So the second group of greencoats are finally on board and have me fill out paperwork and then send me to registration where, thankfully, there are no greencoats.

Registration is much more efficient and helpful, except for the fact that I appear in the system twice and no one can figure out why. It doesn't occur to me until much later that the second Mary Noon could be my mother. The woman behind the counter claps me with my first hospital bracelet. One of those plastic wristlets you have to cut off with scissors. They used to give them out at water theme parks, but this one is customized with my name and birthday on it. The doctors use it as a cheat sheet while delivering memory and sanity tests: What is your name? What is your favorite color? What is the capital of Assyria?

Then they direct me to the radiology department. Unfortunately, they issue directions like disclaimers at the end of a commercial: go to the first stairwayonyourlefthenturnrightandyou’llseeanelevatortkaeittothebasementlevelandturnlefttwomoretimes. I end up wandering the hospital for the next seven minutes like Dorothy in Oz until my presence makes a staff member uncomfortable enough to help me.

The waiting room of Radiology. The tests begin again. They really go like this: A doctor picks up your wrist and asks you your name and birthday. You can still see them printed on your pretty new wrist-band, but you pretend not to and look away as you recite them perfectly, proudly. You pass the test. The doctor drops your wrist, scribbles something on a pad and wanders away. Five minutes later another doctor meanders by and does the same damn thing. You're baffled, but at least you know you will never forget these two important pieces of information ever again. You start listening to the tests being administered to the other patients in the waiting room and memorize their information, hoping that the doctors will try something more complex next time and you’ll blow them away with your super-knowledge of everyone in the room. But they don’t.

It is storming outside. I know this because the TV keeps fritzing out, a couple minutes on, most off. Heads turn back and forth like magnets to its belches of sound. I am sitting across the room from a large cantankerous-looking 80-something woman in a wheelchair and her 50-something daughter, the skinniest adult I’ve ever seen close up. I think, well this woman is an anorexic if there ever was one, but then I hear her voice. It’s like gravel in a blender, the unmistakable rasp of a life-long smoker. Her mother’s voice is identical. So perhaps she was just a really skinny smoker. Or a relation to Bon Scott. It is probable they are both much younger than they appear. This is the game I play in my mind while half-listening to their conversation. I am thankful to this woman for keeping me distracted until it is time for another identity test and my relocation to a procedure room.

For anyone facing a fine needle biopsy, here is what to expect:

I am placed on a typical exam table while I answer a more complex series of test questions, including a few about my now very relevant family history. The main nurse is very pleasant. I have discovered that all medical procedures are much more pleasant if you treat (and are treated in turn) every nurse, doctor, assistant, etc. like a new acquaintance you are trying to learn more about. I have shared a lot of teaching stories over these weeks, and been told many interesting stories in turn.

So I am having a pleasant conversation about the amazing prankster capacities of seventh-graders with the main nurse when a second nurse comes in to repeat the ultrasound portion of the exam. It is much like what you see on TV with pregnant women, only the cold goo is spread on your neck. This time they have the screen facing me so I can actually see the nodules as they scroll over them. In black-and-white they appeared nothing more than black fuzzy holes where apparently there should be white unadulterated tissue. Then my exam table is pumped very high in the air so that my extraordinarily tall doctor can perform the biopsy. Seriously, he must be almost seven feet tall. He is also pleasant and makes corny jokes about my name. There is a brief debate as to whether a nodule on the left side on my thyroid was one or two. (They decided two, but turned out to be wrong.)

Another woman appears and begins preparing slides that she will use to examine and prep the extracted tissues. I am given a local anesthetic and am told it will feel like a bee sting. It does, with one important distinction. The pain of a bee sting tends to last a long while. The pain of the anesthetic, while sharp, is brief, one second maximum, and thereby not at all something to be frightened of.

Then the doctor takes a very large needle with a very tiny point and presses it into my neck a few times. He biopsies two nodules and pumps the needle up and down about ten times for each one. All I feel is a slight pressure. No pain whatsoever. Also I am getting to watch the whole thing on TV, which proves an immensely entertaining distraction

As the biopsy doctor finishes, another doctor joins us (the 6x10 room is getting pretty crowded at this point). He introduces himself as my pathologist and checks the slides to make sure enough tissue has been extracted. This whole time, the only alert I have to something being wrong is the first doctor’s description of my thyroid as “strange” and rather “lumpy and bumpy.” Otherwise everyone remains upbeat and genial, like we are all a part of some product-testing focus group, trying to figure out how to make my thyroid more marketable. And so it is over. A bit inconclusive, but everyone hopeful that the bumps can be smoothed out. I will hear back in a day or two.

Why Your Family Health History is Important

Knowing Your Family History Could Save Your Life

5.18.11
The second small miracle: My cousin Karin has finished up her first year or college at UD and is preparing to return to California with her mother, Charlotte. Since she does not plan on coming back to UD for the rest of her education and since our family lacks traveling funds, I know that this is my last chance to see either of them for a potentially long time. I stay late at work so that I can meet them and my mother for dinner.

The four of us go through a comical and very typical Boyd family fiasco of wrong flight times, changed pick-up plans, misplaced IDs, and rental car mishaps before finally making it to an IHOP just before midnight. Though both my mom and I had promised earlier to eat healthy, light, just a salad or soup, we are famished by the time we arrive and order the usual pancake-and-eggs fanfare. During the course of our dining conversation, I feel the impulse to bring up the thyroid craziness. Our conversation paraphrased and via an imperfect memory:

ME: So did Mom tell you about my abnormal thyroid?
CHAR: (slightly alarmed) No. What’s going on?
ME: Oh, well, I don’t think it’s a big deal or anything, but my thyroid looks like swollen hamburger meat and has all these nodules on it. They said it could be cancerous, but that it’s very rare and since the biopsy costs over 1000 bucks, I don’t think I’ll do it.
CHAR: Oh my gosh. You should. You should get it checked out! Don’t you know what happened to Kathy?
ME: Well yeah, Mom told me that most of you have thyroid problems.
MOM: Everyone but me and Johnny. Not sure why.
CHAR: Yes, but she had thyroid cancer. She had to have the whole thing taken out.
ME: (Alarmed) Cancer? (To Mom, louder) Cancer??
MOM: (Also alarmed) Cancer?
CHAR: (To Mom) Yes, Mary. Don’t you remember? She was about MJ’s age and she had to have the whole thing taken out and now she’s on that thyroid pill.
MOM: Yes, yes. I knew she had problems, but I guess I forgot that she had cancer. I mean we weren’t living in the same house or anything. I must have forgotten.
ME: Forgotten? CANCER? You FORGOT that we have a family history of the very cancer that I might have? Don’t you think this might have been medically relevant information, Mom??
MOM: (sadly) Well, I guess I just forgot. I mean Johnny and I never had any problems. Oh dear. Oh dear. Sweetie, I think you’d better get that biopsy.
ME: Well YEAH.

About a week later, the morning of the biopsy, I found out that another aunt of mine, on my mother’s side, also had thyroid cancer. So that makes two aunts with thyroid cancer. And a very good genetic reason to get a biopsy.

Third small miracle: When I called the finance department a second time to schedule my appointment, the cost of the biopsy magically shrunk to $282. The original estimate was $1100. I tried to get a reasonable explanation of this, then just decided to be grateful and pay.

The Predicament: To Biopsy or Not to Biopsy?

5.10.11

After hearing that my sonogram revealed multiple nodules on my thyroid, something “abnormal” but not “alarming,” I make an appointment with a recommended endocrinologist, Dr. K. Dr. K. is a beautiful, willowy, middle-aged Indian woman who informs me in a thick, familiar accent that yes, I have multiple nodules on both sides of my thyroid, and yes, my thyroid is abnormal in that most people have a delicate butterfly-shaped organ wrapped around their trachea and I have what more closely resembles a piece of hamburger meat mashed into it. So maybe I should get a biopsy done, but not to worry, not to worry. It is very unlikely these nodules are cancerous.

I call the hospital and make an appointment for a biopsy. The hospital finance center calls me to let me know my portion of the cost will be $1100. This is no small amount of money for my income bracket. Also, I am "not to worry" about the "very unlikely" possibility of cancer. So I cancel my appointment.

A Series of Unfortunate Events Leading up to My Thyroid Cancer Diagnosis

I Owe my Diagnosis to a Dog Named Babs

4.29.11
I was bitten by a dog. Obviously dog bites do not cause cancer. But this seemingly unmiraculous event is now what I and my more or less religious family members consider to be the “little miracle” that led to it’s discovery. At the time, it seemed anything but sacrosanct. In fact, it felt a lot like one of those moments when you’ve already lost your keys and gotten a speeding ticket and torn a hole in your favorite jeans and so you look up at the heavens and shake your head disapprovingly at God, silently chastising him with bit film phrases like “Come on, really?” and “What next?” Only, in my case it was a few months of majorly shitty events like experiencing my first two significant family deaths (that of a most beloved grandfather and a grandmother-in-law) and having no job during a horrible recession. In light of these things, the dog bite didn’t seem so bad, just the food-poisoning inducing icing on the cake.

It went like this: After work, I go to Bedford Boys Ranch, which I have recently rediscovered as a beautiful refuge from life, complete with ducks, small children, sunsets, and the unmatchable rippling cadence of wind lapping the water. It has been the inspiration of many poems. I complete a short jog around the pond and head towards my favorite bench, notebook in hand, with high hopes of resting my legs and finding the inspiration for yet another bird-and-water themed poem. I am passing a couple walking two dogs, my eyes on the prize, no thought in my head but to beat any fool pedestrians ignorant of my prior claims on that seat, when I suddenly find myself on the ground, in pain, and crying without really understanding why.

After a few seconds I put together what had happened from the context clues of 1) me lying on the ground with a bleeding leg, 2) the previously nondescript couple standing near me and talking about me and 3) a maniacal beast cavalierly sitting a few feet away with a chunk of my leg in its jaws. Okay, so no bloody stump or jaws or anything that grotesque, but there was definitely a cruelly grinning dog and lots of blood coming from my leg. And suddenly I am in my own version of the infamous Monty Python "Dead Parrot" skit:

MAN: Oh shit! Oh SHIT!
WOMAN: Did she nip her?
MAN: Yeah, yeah. She nipped her all right.
ME: Nip? Nip? Doesn’t feel like a bloody nip!
WOMAN: Well are you sure? Maybe she just knocked her over.
MAN: No, she definitely bit her. Oh shit! We’re going to have to take her to the hospital.
WOMAN: Dammit. Not again.
ME: No, no. Again?! No, I don’t think that’s necessary.
WOMAN: Well ask her if she’s okay. See if she’s bleeding.
MAN: Are you okay? Are you bleeding?
ME: Um, yes. Yes, I’m definitely bleeding. But I don’t think I need to go to the hospital.
MAN: (To wife) She’s bleeding. (To me) Well, she’s a blue heeler, you know. They like to nip people.
WOMAN: We’ll take you to the hospital.
ME: No, no, I don’t think I need to go to the hospital. But, I need to stop the bleeding. Do you have anything I can use?
(Man looks at woman.)
WOMAN: I don’t have anything.
(Man pats his pockets.)
MAN: I don’t have anything either.
ME: Okay then. (I take off my shirt and tie it around my leg. I am now on the ground, bleeding through my favorite shirt and wearing nothing but a sports bra in a public park.)
MAN: Let’s take her to a clinic. I think there is a clinic nearby.
ME. No, no. I’ll be fine. (Nightmarish images of sitting in a waiting room in my sports bra flash through my mind).
WOMAN: We’ll take her to Primacare. There’s a Primacare down the street.
MAN: We’ll take you to Primacare.
ME: No, no. I’ll be fine. I live close by. It’s a very short drive. I’ll be fine. It doesn’t hurt that bad anymore. I think it was the shock of it. (Wiping away tears.)
WOMAN: Our vet is Deborah.
ME: (A blank look.)
WOMAN: She’s right down the street. Off Pipeline. She’s Babs' vet. ("Babs" being the vicious beast who bit me.) (To man) Give her our information and Deborah’s.
MAN: Here, let me give you our information. (Pats pockets.) Honey, I don’t have anything to write with. Or on.
WOMAN: Well I don’t have anything.
(Both look at me.)
I dig my notebook and pen out of my purse and reach to hand it to the man.
MAN: You’d better write this down for me. I’m too shaky.

And so on, until we had exchanged info and Babs' vet records and determined that it was unlikely that I had rabies or anything more serious than a leg that bled for three days and a nasty scar that is still purplish. Against the advice of my doctor-phobic husband, I also called my mother-in-law (a doctor) and acquired a next-morning appointment for a tetanus shot.

So Really I Owe My Diagnosis to My Mother-in-Law (Thanks Anyway, Babs)

It was during this appointment that she felt my neck and pressed on something hard and sore inside of it. What felt to me like little more than a zit turned out to be, one throat sonogram and a biopsy later, a cancerous tumor on my thyroid.

Why I Blog About Thyroid Cancer (Papillary Carcinoma)

On May 24th, 2011, at the age of 27, I was diagnosed with papillary thyroid carcinoma. The title of this blog, “Just Cancer” is part of my satirical commentary  on the perception of this disease. All throughout this process I have been told by well-meaning medical professionals, family members and friends that this is the "good" cancer to have. To which my pithiest response is: there IS no good cancer.

Despite what you may have heard, thyroid cancer is a serious and sometimes fatal disease. It is not easy to go through and should not be dismissed. It is the fastest increasing cancer, with more than 56,000 people diagnosed in 2012. It is especially prevalent in young women and especially fatal for men. This blog is my attempt to reach out to that wider THYCA community with stories, advice and support.

I am also starting this blog in part because, with or without cancer, I am a writer, and this feels like something worth writing about. In fact, those who know me best responded to my diagnosis with, “Well, at least this should give you something to write about.” (I did in fact have things to write about prior to becoming disease-ridden, but I appreciate the proffered silver lining.)

By recording my experience of thyroid cancer, I hope to be offering a more personal version of what to expect than that offered by traditional medical sites. I might at the very least be creating something other cancer patients can laugh at, identify with, or use to quell their fears.