The last time I wrote – just a couple weeks ago – I was waiting for my nuclear iodine scan and uptake results. A lot has happened since then. I kept calling my doctor to find out the results and finally, almost a week later, they realized that they had received them the Friday prior, but hadn’t recognized my middle name. This was red flag number nine or so with this doctor. I then had to wait another day for the doctor to review the results. When they called me back into the office to get the results I asked her if there was any way to give the results over the phone, since last time they charged me a copay to go in for the results, simply to tell me I needed more tests. She told me I had no choice but to go in for the results because the doctor had to discuss everything with me. Thankfully, so much time had passed that even though my mother-in-law had returned home, my dad was now visiting us and could watch Xavi while I went to go get my results in person.
After paying another copay to meet with my doctor and hear the results from the scan (and hopefully also the blood work and sonogram that had not yet really been explained to me), I was seen by the PA who spoke to me for no more than two minutes. I wish I was exaggerating.
The PA, who reeked – and I mean REEKED – of cigarette smoke looked at the paper and shrugged her shoulders and said “I think you’re fine. You should go see an Endocrinologist.” I wanted to breathe a sigh of relief, but honestly, her confidence and knowledge levels were that of Dr. Spaceman on 30 Rock. I asked her if that meant they hadn’t found any cold nodules and she looked at me as if I’d asked her to list all of the ingredients in nail polish and said, “Uhhh, I, uh, I don’t think so. You said they found a nodule ten years ago and it ended up being fine, right? So I’m sure this will be fine.”
Awesome. Did you guys know we really only have to go to the doctor once, maybe twice per lifetime and then just use that data to see if your healthy from there on out? Seems wicked smart, right? The kind of reasoning you really want your (now former) health care provider using.
Somehow, the more tests they ran on me, the worse I felt. It seemed like they were gathering more data, but I actually felt increasingly left in the dark. Which led to more fear.
It also led to binge eating. I’m embarrassed to admit this, but when under duress or anxiety, I eat. A lot. And not lettuce.
I got into my car and immediately Googled ‘Best Endocrinologist NYC.’ I also reached out on Facebook and to family. Within an hour I had a friend offering to give all of my results to someone at NIH to see what they thought, a friend who is a doctor trying to get me in quickly with an excellent Endocrinologist he knew from medical school and an actual appointment with a doctor who is part of the 7th best Endocrinology department in the country. Obviously, it was not the same endocrinologist my ‘doctor’ suggested I try. Their referral was probably to a ‘Fendocrinologist’ if I had looked more closely.
Literally, I went from feeling utterly uncared for and dismissed to feeling entirely safe and in the care of the best of the best.
Also, I have to share that from that one single Facebook post about searching for an Endocrinologist I had so many people message me and offer support, connections, kind words and more often than you might realize, similar stories and situations. I was amazed at how many people I know are working through issues with their thyroid – medicine, tests, biopsies, symptoms, regulation, surgery, iodine treatment. It actually seems pretty rampant and I would have had no idea if I hadn’t said something. I know many people mock Facebook and mock those of us who share a lot on there. But honestly, I am unashamed to say that it often works as such a connector, not just to find out who is married, pregnant, divorcing, going to the Bahamas monthly, but also to give and gain support when things happen. When life happens. Personally, I am thankful to have a way to see when someone I know and care about needs extra support. And in this situation I am thankful that so many reached out to me. It really felt so wonderful to understand that there are always more people than you realize ready to help you.
Last Thursday I was able to meet with an endocrinologist who spent over an hour talking with me, analyzing my test results and then explaining my situation to me. Basically, I have a lot of nodules and from my first sonogram it looked like seven of them were big enough to need a biopsy. My blood work also showed possible signs of slight Hyperthyroidism, but I haven’t experienced any symptoms yet. Kind of impressive that even with possible Hyperthyroidism I put on twelve pounds in two weeks, right? That’s what anxiety does to my eating habits. And that’s why, as I’m shaking my head in disgust at my original doctor, all of my chins seem to be shaking in disgust in agreement.
My new doctor had me do more blood work and another ultrasound. I am hopeful that the second ultrasound finds less than seven nodules that need to be biopsied because Halloween has already passed and I can’t really think of anything else for which a Swiss cheese neck comes in handy. I guess I get to tell people I’m ‘holy’ for a few days? Really looking for a silver lining here, guys. In any event, the biopsies will take place next Wednesday and then I can hopefully move forward with concrete information and a plan. My waistline is excited for that.
You may have heard that there were some other big things happening in this area recently. (What? My biopsies weren’t on the news?!?) Hurricane Sandy was no joke. Thankfully, our family is completely fine – save for how unprepared I was to have TWO boys home all week with no parks or playgrounds open. Unfortunately, many, many people are not fine. This storm took many lives. It also took away homes, possessions, electricity, heat, water (well, it took clean water and gave us salty sewage water in return), and transportation. I am sure most of you have seen plenty of news updates about Sandy that have told you way more details than I would know. I am sure of this because I have had every friend and family member, as far as France, reaching out to see if we are okay after seeing the news. What I can tell you is that all of us appreciate that so much. To know that the world is watching and thinking of us means a lot. I have seen many New Yorkers (on Facebook!) say how much strength it gave them to know that people thought to check on them and see if they were safe. New Yorkers who haven’t been home in days due to lack of heat and water. Like I said, our family is safe and comfortable, but so many are not and I have seen plenty of those people put updates on Facebook in order to reach out to concerned friends and family. You can tell that sharing their part of the story and receiving so many supportive responses is helpful. And healing.
As if it hasn’t already been an intense couple of weeks, there was also a tragedy so big, so unreal, and so painful, that as a friend said, “It kind of shifted something inside of me permanently.” A few days before the hurricane hit our city, there was another reason people were looking at the front pages of newspapers, mouths agape and tears welled up in their eyes. A mother took her 3-year-old daughter to swim class and returned home to find her other two children stabbed to death by their nanny. It’s the kind of thing that takes your breath away. That almost literally punches you in the gut. And then I saw a friend from Carlitos’ preschool write a message on Facebook of peace and love and support to her friend grieving the loss of her two children. And suddenly I knew why the older girl’s name had seemed so familiar. I hadn’t yet seen any photos at that point, but as soon as I did I realized who the family was. The eldest daughter had been at the same tiny preschool as Carlitos when we first moved here. She was one year older and in a different classroom, but they had also just moved to NYC and the mom was also pregnant. Everyone’s kids ran around together after school. All of the moms hung out in the small hallway at pick up. We all volunteered at the the fairs and events throughout the year. It really hit home that what happened to them could have happened to anyone. They were a young family, still moving around as the father’s career grew. The mom was very involved with her kids, only hiring a nanny to help out once they had a third child. They had sent their kids to a language immersion school in support of the kind of cultural diversity that exists in a city like New York. They were a family just like us – somewhere in the middle, trying to do the best things for our kids and the world around us, working hard, doing the best we can. And their kids were taken away from them suddenly and in a way so gory that nobody deserves it, let alone small, innocent children. The whole situation is unthinkable. I don’t really know if there is anything that truly soothes a parent who has lost their child or children. From experiences growing up in a town where too many teenagers died I know that there is medication involved because the pain is truly too much to bear. That alone tells me that perhaps any words of comfort give more solace to the friends and family offering them than to the grieving parents themselves. I would never venture to suggest that connecting via email, phone call, text or Facebook could alleviate the pain of that parent, but I do think it can help everyone else affected.
People need a place to connect. I truly believe that there is so much power in the knowledge that you aren’t alone in your experiences or your feelings. This has been a rough few weeks for me personally, but on a much bigger scale, for many people around me. I am thankful for ways to give and receive whatever comfort we can offer each other.
I hope this next month offers all of us happier times and plenty of positive moments as we lead up to our national day of thanks. And even if the events occurring around us and to us continue to be as difficult as they have been recently, at least I can say that I am thankful for you and for all of the people who open themselves up to human connection in one way or another.