Saturday, May 9, 2015

My Thyroid Story: It Ain't Over 'til It's Over (Part Four of Four)

March 25th marked the one-year anniversary of my being diagnosed with Graves' Disease. In the months that followed, I learned I had thyroid cancer as well. But through all of the repetitive testing and unexpected procedures I found there were few sources which documented events specifically. I would have anticipated, in this enormous blogosphere of ours, at least two or three personal experiences with Graves' -- not so. Of course, I couldn't resist taking a crack at changing all that. This is the conclusion of that effort:

In today's world, even our biological waste must be sifted and analyzed before someone actually deems it trash. Despite the frequency of its use, "biopsy" is a word that strikes fear in the hearts of most people. I am no different. When the pathology of my thyroid came back from the "tissue guru," I was shown a very brief, surprisingly straightforward summary of the findings. Four very small (less than 5mm) foci. Cancer. I see those movies where the word "cancer" is the last thing people hear: everything that transpires in the doctor's office after that instant is a blur; every word that is spoken sounds like it is spoken underwater. It wasn't like that. My thyroid was gone. The cancer was found in my thyroid. Therefore, the cancer is gone. Terrible at doing proofs in tenth grade Geometry, I was a superstar that day. This can't equal this if this doesn't equal that.

That's not how it works. Cancer cells are known for disregarding boundaries; it was possible -- however unlikely -- that the cancer had not stayed confined to quarters prior to my thyroid being removed. It was also possible that any remaining thyroid tissue was still plagued by cancer cells determined to stay where they were not wanted. My surgeon recommended an oncologist.

At my initial consultation I was greeted warmly by some of the most wonderful people I never wanted to see again. They gave me information on thyroid cancer. (Why?) They started talking to me about recipes for the diet prior to treatment. (What treatment?) They took me into that comfortable little faux living room where they present in tempered voices your options, or lack thereof. There must have been six boxes of tissues in that place. (Oh, Lord, get that man in here to tell me we're good so I can get out of this place!) He was sweet; he was serious, but I just wanted to look at him and say, "Look, Doc. You know and I know four ridiculously small foci mean nothing. Let's just cut to the chase, wish one another safe home and go our respective ways." And he did agree -- with one exception: a follow-up. For what?! We talked about my incision, my vocal paralysis, my medication. All stuff being monitored by other specialists. What on earth did I need to follow-up with him for?! My insurance must be better than I thought. I made the appointment, fully intending to cancel if -- I don't know, I guess if I didn't collapse or develop a third eye or something in the meantime.

When I got home and ran my intentions past my husband, I was told in no uncertain terms that if I cancelled the appointment there would be hell to pay. By now, I had had it with doctors, appointments, waiting rooms, blood tests, and all manner of forms -- medical, insurance, or otherwise. But to defy Scott after he so courageously and graciously hopped on board this merry-go-round with me, would have been our undoing. When the appointment rolled around I went.

Blood work I'd had done a week or so prior, showed the presence of thyroglobulin antibodies -- antibodies that indicate the likelihood of thyroid cancer cells. At my appointment we talked about a whole body scan -- a test that would reveal exactly how much thyroid tissue still remained in my body, and whether those cells had migrated to other places. This painless, CT-like scan requires TSH (Thyroid-Stimulating Hormone) levels to be elevated, and requires thyroid tissue to be starved of iodine for about two weeks. Twenty-four hours before the scan you are given a dose of radioactive iodine.  The iodine is absorbed by hungry tissue, and the radiation glows on the scan, revealing where and how much tissue needs to be treated. I left the office with instructions for a low-iodine diet and immediately headed for Ruby Tuesday to grab a fully-loaded "goodbye burger."

I had been instructed to cease taking my Levothyroxine until further notice, and to remove most of the iodine from my diet. Sounds pretty easy, right? It's only iodine. Who ever thinks about iodine? I'll wait here while you check your cabinets and refrigerator for iodine. IT'S IN EVERYTHING! Well, almost. Store-bought bread and cereals. Dressings and spreads. Dairy. I was told to read labels carefully: if the label said "Salt," it was out. (On one of the websites I consulted, some diehard even contacted manufacturers to see if their products were indeed made with iodized salt. The iodine Nazis had a comeback for that: "Manufacturers change suppliers and products all the time while failing to update their packaging in a timely fashion. Salt -- any salt -- as an ingredient is out. Oh, and don't even think about eating out; you can never be too sure what you're getting. We will find you." Ok, maybe not the "find you" part, but they definitely stressed the importance of obeying restrictions. Besides, I wanted this to work; the faster we got 'r done, the faster I could get on with my life.) Every site, every piece of literature I received, every person I interrogated said becoming hypothyroid as a result of being off my Levo, would leave me tired, would cause weight gain and a drop in blood pressure. Some websites suggested cooking and freezing as many low-iodine meals as possible "because you're not going to want to be making ___ when you're hypo."

Ok, so here's the dirt: I haven't felt that wonderful in years. In fact, when I mentioned that to a nurse, she said that in twenty-five years she'd heard only one person make the same claim. Turns out, this woman had Celiac Disease; by adhering to the lo-ID, she'd cut out many of the foods that had been causing her discomfort. Now, I've never been tested for even a gluten sensitivity, but I know that my digestive system was a wreck (something I'd always attributed to bulimic behaviors and years of bad eating habits.) The hyperthyroidism I'd experienced at the onset of Graves' Disease symptoms had caused anxiousness and heart palpitations, but left me with no strength to do anything. Much of my hair had fallen out early on, leaving me with much thinner hair; my nails had gotten weak and began curling upwards. But on this diet, it all began to change -- rapidly! Sure, there were times when my co-workers indulged in soft pretzels and bags of crispy, crunchy chips right. in. front. of. me! Sure I couldn't wait to sink my teeth into a perfectly baked, rising crust pizza. But, for the most part, I stick to the diet still today. Every time I think of inhaling bread dough or crackers, I remind myself of the stomach pain I no longer feel on what had become a daily basis. Every time I hop on the scale, I am reminded of how much healthier I feel, and how much I'd like to lose about fifteen more pounds -- and I know I can.

As far as the results of the whole body scan? The oncologist recommended a larger dose of radiation -- an "ablative dose" to, basically, fry any remaining tissue, thereby eliminating cancer cells and their target. On February 13, 2015, I was given "the poison pill." An appointment that required sixty minutes of drive time and sixty seconds of pill-taking. For the next three days, I was not allowed to be around any "real people." I could not eat at the table with my family or hug my granddaughter. My dishes, sheets and towels had to be washed separately. I slept on an air mattress in my office and spent my days writing, reading, or doing crossword puzzles.

In five days I will be heading back to the oncologist for what I hope will be, my last visit. I called the other day, and he is not requiring any blood work or other tests prior to my arrival. Sounds like "goodbye" to me.

Sometimes, no matter how well-planned, a trip just doesn't go as expected. You run off the road and practically demolish the family truckster, Aunt Edna gives up the ghost, the dog pees on the picnic basket, and when all is said and done, the park's closed for repairs anyway. The only thing that does go as expected, is the visit with the cousins: that's always a nightmare regardless.

This year long adventure started out as nothing more than a three-month round of pharmaceutical therapy or -- worst case -- an overnight stay at the hospital. From start to finish, nothing was textbook -- one of the reasons I felt so compelled to write. I recently saw a sign that said. "Cancer gave me more than it could ever take away." Thank God, I've not endured half of what others have, but I know exactly what the author meant: The lessons I've learned are timeless. The people I've met are true heroes. The prayers I've received are invaluable. I've walked away from this journey with far more than I've left behind.

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