Also Known As
“My Story, Part 2 – The Aftermath:
Soaring Birds + Intuition + Statistics = Three Years Cancer-Free”
Following a total thyroidectomy, the typical protocol for treatment of thyroid cancer is Radioactive Iodine treatment (RAI). This entails taking a pill(s) made out of some kind of radioactive poison strong enough to require that the pill-taker remains sequestered in a room without touching anyone, preparing food near others’ food, eating next to anyone or even sharing a toilet seat with anyone. People burn their sheets when they are done with this treatment, I’ve heard. But the doctors will reassure you that it’s really no big deal. They will explain that it’s such a LOW dose of radioactive iodine, after all. It won’t hurt YOU. Just the people NEXT to you if you glow too close to them. Oh, and your salivary glands may not work right anymore afterwards. But really, that’s it. Well, except that if you took the radioactive iodine in very LARGE doses it is possible that it could cause other cancers. But yours are SMALL doses. Teeny, tiny doses. So it’s really no biggie. Not that the doctors have necessarily ever taken the pill themselves. Do I sound bitter? I really don’t mean to sound bitter.
Don’t get me wrong – I get it. The benefit of preventing recurrences of thyroid cancer is supposed to outweigh the risks of the RAI treatment. RAI irradiates any remaining thyroid tissue (cancerous or not), giving doctors a better baseline for reading future blood work, while simultaneously wiping out any remnant cancer cells that could have been missed during surgery. And for many thyroid cancer patients, this makes perfect sense. I have three dear friends who have also had thyroid cancer, and for all three of them, RAI was a no-brainer. (Yes, we became friends primarily for thyroid cancer support – it’s like a little club). But not all cancers are created equally. Their cancers were different from mine; theirs were papillary carcinomas, which had already spread to other areas in their necks and lymph nodes. Prevention of recurrence as well as killing remnant cells with RAI was absolutely necessary for them. My cancer, on the other hand, was a follicular carcinoma – less common than the papillary, less likely to recur, although if it does come back, it comes back in scary places like your brain, lungs and/or bones. That said, pathology results after my surgery had shown that my cancer had not spread anywhere. Mine was “totally encapsulated, with no vascular invasion.” This means that I had this slightly-larger-than-a-grape-sized ball of cancer in my neck with a nice thick membrane around it that kept it all in one tidy place. Remove the ball, cancer gone. No remnant cancer tissue – it’s all INSIDE the ball, and the ball is gone (along with the rest of my thyroid, which appeared to be healthy, but apparently, one can never be too careful). Not to mention, after seeking second and third opinions, only two out of three doctors were calling my ball “cancer.” (First opinion=cancer; second opinion=not cancer; tie-breaker=cancer). Although the cancer identifiers were in the majority, it was not a unanimous decision. Apparently even science is open to interpretation; it is not all cut and dry, which made me think that as a smart girl with a lot at stake, I had an active role in this decision. In my mind, the “facts” surrounding my case told me that surgery had likely solved the problem. Done and done. There was no need for poison and quarantine.
My surgeon did not agree. He thought I should do the RAI. It was protocol, after all. But something in my guts was telling me not to do it. It was not just that I had small children; kids who were already a little freaked out that their mother had been in the hospital and then incapacitated for a while to recover from the “boo boo in her neck.” I certainly didn’t want to have to explain to them why I couldn’t live in the same house, hug them or tuck them in for two weeks, but I could have gotten past that if I really thought the RAI was necessary. I even tried to talk myself into the idea that two weeks of quarantine might be nice – maybe I would teach myself to play the guitar. I would certainly read a lot, write a lot, and try to enjoy the “alone time” that moms always wish for, remembering to be careful of what I wish for in the future. But I had a deeply intuitive feeling of overall health telling me that I didn’t need this treatment. Not right now.
Once I was back on my feet after the surgery, I started running again. I would go for a run, and get into that happy Zen place where the sunshine makes my skin tingle, and I would just feel and know that my body was healthy. I would be filled with this overwhelming sense of gratitude, feeling connected to the whole world around me. I would notice soaring birds a lot on these runs (turkey vultures mostly), and when I saw them, I would imagine that they were flying with me; that they were somehow confirming information from a higher source of intelligence. Sometimes I could vividly picture in my mind’s eye the birds’ perspective of what it must look and feel like to fly over the trees. Whenever I felt that tingly feeling of happiness during a run, the birds would appear, and the thought that would occur to me was, “Yes, you are correct – you DO see the big picture, and your body is healthy. There is no need for anything else.” And in those moments, I knew with absolute confidence that I was OK. I know this sounds a little crazy. But learning to live in the present moment has often left me feeling pretty spectacularly connected to nature, and in those moments, I just knew from the core of my being that the cancer was gone. And I think that maybe…just maybe…those beautiful soaring birds knew it, too.
I decided to change doctors. I had planned on doing that anyway – I had just had such a terrible experience at our local hospital. So my husband and I set off for the big city to see a big-wig thyroid expert with a lot of cred. I will call him “Dr. P.” The “P” is for “Puppy,” because sometimes when I tell him what I am thinking and feeling he cocks his head ever-so-slightly to the side as he listens. Just like a puppy when it’s considering an unfamiliar situation, or it is perhaps slightly confused. When Dr. P. does this, it can be very endearing, or it can make me feel a little crazy. But make no mistake; Dr. P. is a very smart, highly reputable endocrinologist at a renowned hospital, and he seems like a very nice man with all good intentions and a lot of knowledge and resources at his disposal. All good things in a doctor monitoring a person for cancer recurrence.
Dr. P. also initially recommended the RAI. The factors pushing the case over the edge for him were 1) the idea that “majority rules” in terms of diagnosis, and 2) the size of the nodule that had been removed. For nodules 1 cm or less, RAI is not always recommended. Mine was 4 cm. Not even borderline, but like I said, I just knew. So I made my case to Dr. P. I explained to him that my husband and I had done the research, and after reading the studies and statistics, we had figured out that if I did the RAI, there was a 99% chance of non-recurrence. But if I DIDN’T do the RAI, there was still a 94% chance of non-recurrence. PLUS, the treatment protocol for recurrence was EXACTLY THE SAME AS THE PREVENTION. This made it seem a ridiculous no-brainer to me. Why on earth would I pump my body full of poison unless it was undeniably necessary? I told him I could live with the 5% difference, knowing that if it came back, it’s that slow-growing-cancer that everyone tells you is the one you want if you were ever forced to pick a cancer, right? (For the record, I hate it when people say that – I’m glad I’m OK, but thryoid cancer has its pretty sucky moments).
Dr. P. cocked his head, considering this strange girl, her strange logic, and her willingness to argue with accepted protocols while simultaneously on the verge of very non-scientifc, emotional girly-tears (Don’t worry – I didn’t tell him about the birds). He conferred with his colleagues, and he ultimately agreed that I didn’t have to do the RAI. At least not right now. He agreed to follow me without the RAI, as long as I agreed to have my blood work done religiously every three months, and with the understanding that we weren’t necessarily closing the door on RAI forever. Deal.
February 17, 2013 marks three years since my surgery. I am three years cancer-free, baby - Yahoo! And I feel great. Possibly better than I have ever felt before. It certainly hasn’t all been sunshine and soaring birds, but today – right now – I feel really good. Over the past three years, there have been a lot of experiments with vitamins, exercise, diet, creams, therapy, etc. to balance my hormones to get to this lovely, happy place (you would be AMAZED at how a body can react when its hormonal powerhouse is surgically removed and its function substituted with pharmaceuticals – not to mention, the “c” word can do a number on your psyche). There have also been moments when my blood work has shown bizarre little jumps; moments when I have taken pause, felt real fear and cried a lot of tears. But overall, things are really, really good. And up to now, I have always had hopeful, intuitive explanations for the blood work jumps, and when we have re-tested, so far I have always been right. But perhaps these things are fodder for another essay at another time.
The lesson I take from all of this is that I am learning to listen to my body. I trust it. I love it. I know that it is connected to my mind and spirit, and when everything is in balance, I get good information from all three sources, and life is really, really sweet. I do carefully consider the research and knowledge of my doctors, and I respect their experience and advice, but I also know that medicine is a “practice” – there is no “perfect,” which means that my opinions and instincts about my own body count, too. And frankly, no one knows my body better than I do. In this particular situation, Dr. P’s willingness to endorse a treatment plan without RAI confirmed my thought that in my case, the RAI plan was intended to err on the side of caution. Another patient’s conclusion in the same situation may have been entirely different than mine – but I don’t think that there are wrong answers, as long as you know you can make peace with the consequences of whatever you decide. I am quite pleased with the outcome of my decision so far. Quite pleased indeed.
Three years cancer-free, baby…and no RAI in sight for me…at least for today.
Want to read more about my cancer story?
Photo © Kathryn Mann, Original can be found here: http://oklahomabirdsandbutterflies.com/cat/3/18