I’m at that point in my post-thyroid cancer bout when the cancer itself is no longer a threat. I was a high-probability success story from the start, with a well-contained tumor and no sign of cancer in my lymph nodes (knock on wood.) This summer I was so busy moving that I forgot to celebrate two years since my surgery, and just last week would have been two years since my quarantine for radioactive iodine treatment. I can say with confidence I’m cancer free.
What I’m learning now is how to live without a thyroid. I’m grateful for the people who can relate and post to the Facebook group Dear thyroid lovehateyou, and other cancer survivors who bitch with such relish about their missing body parts. Some days I’m so down on how I don’t have a thyroid anymore. I wish I had known more about what my thyroid was doing for me before the diagnosis, instead of learning all about it once it was on its way out. “But Maria, whatever do you mean? It was such a small, meaningless set of hormones whose function can be replaced by a pill.” Yeah, right.
This is the deal – the invisibility of your thyroid when it is functioning well is a beautiful thing – you run around with some sort of regular energy level, your body can amp up or ramp down your metabolism, you skip along like you are in a tampon commercial and constantly feeling awesome. Yes, I’m painting a rosier picture than it really is, but twenty-twenty hind site is very important here, in this post-thyroid land where my dose has reached a new plateau for a couple years (212.5 mcg per day) and where I have to be careful about having too much calcium too close to when I take my pill, where I can’t tell if my weight gain is from lack of exercise or wrong dose, where my body doesn’t adjust like it used to (and I’m older now, yeah, yeah). I am in a better position than most people, perhaps, because I have a job that comes with health insurance and so by virtue of having this very precious status I should be able to live my life with very little impact on it given that I don’t have a thyroid.
Wrong. Simply the having of insurance does not make life without my thyroid easier. During this transition from graduate student in Seattle to faculty member in San Francisco (yay! I have a degree and a job!) I’ve been struggling with how to re-start medical care in a new place. I know I have hundreds of dollars a year in prescription drugs and the need to access a qualified endocrinologist, and these factors weighed into my selection of medical insurance through my new job that requires me to pay on top of my employer’s contribution. That hard decision behind me, I sat down to count the number of days I had left before I needed to somehow get a new prescription of levothyroxine, and confront a new person who doesn’t know me nor know that all they have to do is write a prescription for a small pink pill I’m already taking everyday. This is how my brain put it together – a mixture of an identity crisis, the burden of building a new relationship with a doctor who wasn’t there through my cancer treatment, and some emotional insecurity linked to how I would be judged by my new doctor, as if they could take one look at me and decide I wasn’t handling my forced hypothyroidism correctly. For me, there is real anxiety that comes with trying to work with a new doctor, I think because I know I will be seeing this person more than once a year for the next few years, and that’s more than I ever needed a doctor before cancer. I have a new provider in mind, but I’m still nervous about meeting her.
But even before I go too far down the line of new face to face doctor interactions, there’s still the issue of the dwindling supply of pink pills. That is a strong cause of fear in my life. I’ve woken up on more than a couple of occasions wondering how many pills I have left before I need to get a new prescription. For those of us for whom the memory of being hypothyroidic during radioactive iodine treatment or other causes is still fresh, the idea of going low again is not at all appealing. I wrote a song for guitar about how badly I just wanted to be able to take levothyroxine to feel normal during my iodine treatment. I think I called it “Days until myself again” and I will probably never play it live for anyone (I was seriously down and had no sense of judgment, so I just played it to myself sitting along at home all radioactive.)
Most recently, counting the pills the other week, I figured I had enough to last two more weeks, which was plenty of time to call the pharmacy that had my prescription, find out if they could still fill my prescription and have it mailed two states over to my new home, and keep up my schedule. Alas, though I see myself as partially identified as this person who take that particular pill every day, those who control the pharmacy have a different view of me as a number. After calling the pharmacy, I was informed that though there were still two refills left on my prescription it could not be refilled since it was over a year old. I asked the pharmacist in Washington to explain to me in California what that meant, and all she could say was that they can’t fill a prescription more than a year old. I froze. In my mind I thought, “well yeah maybe for those other people, but you don’t know me and you don’t know that I take this every day, have for two years, so clearly this rule doesn’t apply to me.” Instead I asked her to explain how I could have two refills left and still not be able to get the prescription filled, and she explained again, that even though I have two refills left the prescription on file was over a year old and so she couldn’t fill it.
I don’t every really have a nice metaphor for the feeling that followed, but it was that feeling of being completely unknown, of total strangerhood when all I needed was to be rehumanized, reanimated by my history, remembered as a whole person who was coming to be partially defined by this small pink pill. Instead I was helpless. If only the pharmacist knew that this piece of paper she needed updated was just going to be a very similar piece of paper, that this was normal for me, and that stopping me from getting my pills was abnormal – then maybe she would just say she could pop it in the mail. But no, we were in this legal land where suddenly her hands were tied. I looked again at my small supply of little pink pills, and even though I knew I wouldn’t die without them, I thanked the pharmacist for her time, hung up the phone and started to cry. I cried because she wouldn’t just send the damn pills. I cried because I had papers to grade and instead I was stressing out about medicine. I cried because although I have new medical insurance I don’t have a doctor yet and so I don’t have a new piece of paper from a new doctor yet. I cried because the last time I called the office of my primary care provider I had been told a new patient appointment was about a month away. I cried because I felt so powerless to help myself.
Then I called my husband and cried some more in frustration. We were mutually frustrated over the phone, but couldn’t really do anything. My brain kept insisting, don’t these people know I just need more of the same damn little pill I take every day? I don’t need rules, I just need that little bottle. Finally I calmed down, I got off the phone with my husband, I called my old clinic in Seattle, who paged my old doctor, who called me back in ten minutes. I finally talked to someone who knew me and who had the power to call in a new prescription. Everything was going to be fine, for now.
This is what the medical industry is like for me, a person who is coming to be partially defined by her reliance on it, who is learning how to navigate it, and who doesn’t have the time to figure out all the ins and outs when she’s trying to do her new fantastic job.
As a well-insured person in the medical-industrial complex, I should be able to access adequate and timely health care that is appropriate for my needs and I should not have to sift through hours of webpages, manuals, or phone calls to do it. Shit, even uninsured people should have those same rights. In my world vision, as one of millions of people who take a prescription drug every day I should be able to carry on with my life with some kind of special status associated with me and my prescription that at the very least does not require a new one every year. I feel like I’m in this special group of people who have a reliance on medicine that is still regulated like it’s our first time using it. I don’t feel like I am in a relationship with the medical world that acknowledges my experience with it. Instead, I feel powerless. So much of my energy these past two months have gone in to figuring out how to re-start health care in a new place, and that’s time I don’t have.
So thyroid, I miss you. And I look forward to the next chapter in becoming a post-thyroid cancer person, where I care less about my pink pills, and maybe even stop taking them all together as I explore alternatives to medicine, and know and trust and new doctor.