Category Archives: Waiting

First Real-Time Entry

(Up until now, I’ve been summing up what’s happened without dates.  From here on out it’s live, on-the-scene reporting of the thoughts in my head.  Exciting, I know.  From this point until May 4 –the day I copied all these older entries into the blog–I have edited the time stamps to match the dates on which I wrote each entry, so that they will appear in order.)

It’s Saturday. Such a beautiful, amazing Saturday. We ran to Lowe’s and got some mulch, composted cow manure—the good stuff, right?—and of course, plants. When we pulled up, Eleanor actually said, “Is this more plants, Daddy?” Smart girl.

I actually did something today—I mean outside of the bare minimum house maintenance and cooking I’ve been up to lately. I weeded my porch garden. It was nice to clear out the beds, and wonderful to discover lots of earthworms in there. I’m about to go out there and plant some garlic.

I also caught up this journal thing. It’s funny, because I might find out next week (I almost typed Monday, and then I stopped myself. But surely next week, right?) that I don’t have cancer at all and I have wasted all of this time obsessing and journaling and whatnot. Except that I am really glad that I have learned about thyroid cancer. It is, after all, the fastest growing cancer today.

I am trying to hold back from assuming I have cancer. Wouldn’t that be awesome, if I didn’t? But I admit I do kind of assume it. I also have a lot of random thoughts bopping around in my head. Here are some of them:

What if I am dependent upon artificial thyroid hormones, and the economy collapses, and the drug manufacturers quit making it? I know that’s far out. But it has occurred to me.

I am dreading weaning Eleanor. She really likes to nurse. I have already cut out all breastfeeding except for first thing in the morning, nap time, and bedtime. I contemplated preemptively starting to wean her, but decided that I wouldn’t make a real effort unless I got a cancer diagnosis. However, once a diagnosis is made, I am going to work determinedly on it, to get it done as quickly as can be humanely done. The reason is that besides the fact that I can’t let my baby have radioactive breast milk and would have to be isolated from her for at least 10 days if I had RAI treatment, iodine collects in breast milk, and then the last thing I need is radioactive material concentrated for a long time in my breasts. Having RAI would already increase my odds of breast cancer. I don’t intend to help it along.

Also, I keep running over the list of the times I’ve had x-ray radiation on my neck. What I’ve read indicates that diagnostic x-rays don’t deliver enough to cause thyroid cancer, but does that mean just one diagnostic x-ray? How many? At least one study suggests that there may be a link between dental x-rays and thyroid cancer. So here’s the run down, as I remember it:

  • As a newborn, my head was x-rayed a few times to make sure my skull sutures hadn’t already joined. I wonder if Dad remembers how many times.
  • I’ve had several sets of dental x-rays, from child hood up until…the last time I went to the dentist. I can’t remember for which of these, if any, my thyroid was protected by a lead shield.
  • I had scoliosis when I was in junior high school. I know of at least two x-rays of my spine, including my neck area, were done at that time. The irony is that I remember my doctor shielded my breasts at that time. However, since he was going for a image of my vertebrae, shielding my neck was not what he wanted to do.
  • I was in a car wreck with a minor head injury when I was in my early twenties. I know I had at least one x-ray at that time.
  • Dr. R, my chiropractor did x-rays when I first became his patient. I remember discussing whether it was a good idea, since I have always been against unnecessary radiation at any time. He told me that the radiation was minimal and that the x-rays were important to my treatment. I insisted he shield my ovaries, saying “All the eggs I’ll ever have are in there.” Again, getting a shot of my neck vertebrae was part of what he was trying to do, so shielding my thyroid wouldn’t have made sense.

I think that’s all the x-rays of my head and/or neck area that I’ve had. One thing I’ve been thinking about is that I have no idea if my children have had their necks shielded when they’ve had dental x-rays. You had better believe that I will be super vigilant about that from now on.

I guess that’s what I’m most thankful for in all of this right now. Whether I have cancer or not, I have learned a lot about thyroid cancer. I have become aware. And as the continuum concept folks are fond of saying, “Once your consciousness has been raised, it cannot be lowered.”

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Getting the Family Up to Speed

All this time, I hadn’t really talked to Rusty about what a cancer diagnosis would mean in terms of what would happen next. I had avoided talking about my situation too much, because I knew it would stress him out. But I was starting to feel the need to let him know what we could be looking at over the next few months.

So Wednesday afternoon, while the boys were playing down the street with a friend, I sat in the grass while he worked in the flower beds, and I filled him in a little—surgery, radioactive iodine, quarantine. He took it all in, a little incredulous about the radioactive mommy part. But I think he was also relieved that chemo would not be on the agenda.

I told him what I had already been saying—I wasn’t that scared of cancer. But I was not looking forward to the upheaval it would cause for the family.

“Oh, we’ll be fine,” was his response to that. He was in his rock-solid-supporter role just then. I knew it wouldn’t be fair to expect him to always be so confident and to never need reassurance himself, but it was nice to hear at that moment.

After Bible study that night, T, a friend who I hadn’t caught up with lately asked, “So how’s everything in your family?” I just looked at him a minute. I could not say, “Oh, it’s fine,” knowing it was possible I would be announcing a cancer diagnosis the following week.

“I had a biopsy on my thyroid yesterday,” I finally answered. He nodded. I knew that there was a lot of health-related drama going on in his family, too. He told me he would be praying for me. M, his wife walked up. I told her about it, too. “Oh, I knew you had had a test of some kind,” she said, nodding. So I knew that at least some people outside the circle I had told knew I had something going on. She, too, offered to pray for me.

Thursday I went back to ladies’ Bible study. Afterward, I talked with Y a little more about my situation, telling her what Dr. B had said about probably having a thyroidectomy sometime. I asked her about her experience. She said that it had mostly been no big deal, except that her voice was slightly damaged afterwards and had required a few months to recover. I knew that vocal cord damage was a possibility, as was injury to the parathyroid glands that controlled the body’s calcium levels. But that seemed too far out of my control to dwell on.

Yvette had offered me the loan of a couple of thyroid books. They were sitting on the console between me and Silas as we drove home.

“Why do you have these thyroid books?” he asked.

“Mrs. Y loaned them to me,” I said, trying to sound casual. Rusty and I had not discussed the situation with our kids. We seemed to have an unspoken agreement that it was better not to worry them needlessly, especially since they had learned all too well the past few years about the transience of life. Within a three year span, he had lost two grandparents and three great-grandparents.

“Does your doctor think you might have cancer?” he asked.

Doesn’t miss anything, I thought. Should have been more careful. “Did you hear me talking to Mrs. Y?” I asked.

“Yeah, I have ears like a fox,” he said. The boys had been playing video games, and I had honestly forgotten that they were within earshot while I was talking with Y. I replayed the conversation in my head, assessing what he had most likely heard. The good news was that I had reiterated my “I am not scared of it being cancer” mantra, as well as quoting that there was about a 90% survival rate for 30 years, joking that I didn’t even think the general population had odds that good.

“Well, It’s nothing to be very worried about,” I said.

“Yeah, I heard you talking about that. It doesn’t sound too bad.”

I filled him in a little on what would happen if I did get a cancer diagnosis, answering his questions about what a thyroid did and how I could live if it was taken out. He seemed to think that having a radioactive mom would be really cool. Something to brag to his friends about for sure. I was relieved. I could tell he wasn’t scared.

Obsessed as I was, I perused Y’s books that afternoon. Both were more generally about thyroid disorders, but they each had a chapter on thyroid nodules and cancer. One of them was particularly interesting to me, because it had been written in the late 90’s. It mentioned that about 15,000 people were diagnosed with thyroid cancer each year. I had recently read somewhere else that the number was now more like 35,000, and that thyroid cancer was the fastest growing variety, in terms of new cases each year.

I went on the Thyca (Thyroid Cancer Survivors) website to check the actual figure. I was floored. In 2013, the projection was that there would be over 60,000 new cases reported, a 6% increase from 2012. I told myself that even if I don’t have cancer, I am going to start promoting thyroid cancer awareness, putting a ribbon on my car, wearing a “check your neck” t-shirt, posting on social media. Thyroid cancer might be the rarest kind, but at this rate, it won’t be for long. This is something people needed to hear about! I am going to wait until I have an answer one way or another, however.

Ultrasound and Waiting

The ultrasound was on Friday morning, April 29th. It was the day we were scheduled to leave for our “spring break” trip—even homeschoolers need a spring break!—to Panama City, Florida. I arrived at the diagnostic imaging center for an 8:00 appointment. The lobby was full. I read on my kindle while I waited. Eventually, my name was called, and I was ushered into an area plastered with pictures of….babies!

As a childbirth educator, I am fairly familiar with the OBGYN practices in our area. I knew for sure that the largest practice had their own ultrasound staff and equipment; I had assumed that the smaller practice did as well. So I was surprised to learn that the smaller practice actually sent their patients over there for their ultrasounds.

So I sat on the table in the ultrasound room and gazed at adorable art pictures of newborns while the tech dimmed the lights in the room and applied her transducer to my neck. She complimented me on wearing ideal attire for a neck scan—a blouse that left the area around my neck bare to just below my collar bone.
I am normally a chatter—I like to make conversation with the people I have interactions with, from the girl at the Publix check out to the guy that comes to work on our appliances. But with an ultrasound transducer on my neck, talking wasn’t the thing. Instead I waited in silence while the tech did her job. After a few minutes, she was done, and she started wiping the goo off my neck.

“Can you tell me anything?” I asked.

“Well, you have some thyroid nodules,” she said.

Nodules? I thought. More than one? She went on to run through what I had already learned from the limited research I had allowed myself on the internet: Thyroid nodules are common, they are usually benign, if they do turn out to be cancer, I would have to have surgery and maybe other treatments. She told me that my doctor should have the results within 24 hours. Since it was Friday, I assumed that meant Dr. G would have them sometime Monday.

After I got home, we finished loading the car and took off for our vacation. During our drive to the beach, I got a call from Dr. G’s nurse about my blood work. I was unsurprised to learn that my thyroid levels were normal, though I wished for more detailed information. She asked about my ultrasound. I told her it had been that morning.

“When we get that report, we’ll give you a call,” she said. I did the mental calculation and figured I’d have a call by Monday evening if I was lucky, but surely by Tuesday. What I didn’t know was that the imaging center was not known for their quick turnaround on reports, in spite of what the tech had told me.

I was determined not to let my thyroid nodules dominate my mind or conversation while we were on vacation. I knew that Rusty was worried, and that talking about it would make it worse for him. I am also all too aware of my own obsessive tendencies—when my mind becomes occupied with a topic, I have a very hard time thinking about anything else. It’s all I can do to keep from spending large portions of my day searching for information on the subject du jour. I tried to redirect my thoughts to my new interest, essential oils. I had brought a couple of books, as well as my small supply of oils. I had fun experimenting.

Still, I couldn’t stop myself from doing a little bit of covert investigation, both via internet on my phone and through a book that I found in the kindle store. I gathered a basic outline of the likely next steps and also got a good idea of what my current odds were of a cancer diagnosis. I knew that regardless of what the ultrasound showed, I was probably at least in for a fine needle biopsy. I learned that it made a difference whether the doctor doing the biopsy was experienced in the procedure and if he or she used ultrasound to guide the placement of the needle.

I started doing a little research on endocrinologists in the Auburn-Opelika area, as well as in Birmingham. “I want you to promise me you will find a good doctor,” my friend J said when she called me on the phone during the week.

I also learned about the different types of thyroid cancer and a little about their respective treatments and outcomes. The outlook wasn’t too bad. Even if I had thyroid cancer, odds were I could be cured. Anaplastic thyroid cancer looked pretty scary, but it is also very, very rare. I decided it was so unlikely that it was safe to ignore it as a possibility. After all, only 5% of thyroid nodules were malignant, and then, of those, only 1-3% were diagnosed as anaplastic cancer.

So I thought I could see the path ahead, at least for a few steps. I would most likely have a fine needle biopsy (FNA). If the results were benign, my nodule would probably be monitored every 6 months to a year. If the results were unclear because of an inadequate sample, I would have another biopsy done in a few weeks. If the results were inconclusive because it was too hard for the pathologist to tell if the cells were normal follicular cells or not, I would probably have at least half of my thyroid removed to be on the safe side. If the surgical results showed cancer, I would have my whole thyroid out, most likely followed up by radioactive idodine treatment (RAI) to make sure there weren’t any traces of thyroid cancer left in my body. If it was anaplastic thyroid cancer….well, I wasn’t going to think about that.

Monday passed without a call. Then Tuesday. On Wednesday, I left a message for Dr. G’s nurse, asking if my results were back. My anxiety to know what the ultrasound looked like was building. I knew enough now to be aware that some nodule characteristics, like irregular margins, microcalcifications, and centralized vascularity, were more indicative of cancer.

Wednesday also brought Rusty’s mom, and brother to join us at the beach cabin, along with their two small dogs and our nephew. My boys were thrilled their cousin was coming to play; Rusty and I were happy that his brother and mom were getting out of the house to do something recreational. His brother had come far enough with physical therapy to be walking some now.

It was a very pleasant week. The temps at the beach were a little on the cool side, but my boys at least did not find the cold water a deterrent from cruising on their boogie boards and exploring the sand bar that appeared towards the end of the week. Rusty and I read, listened to the waves, and watched the dolphins and pelicans pass by while Eleanor played in the sand. In the evenings, we went to our favorite local restaurants, hitting Boon Docks twice. Then we would shop, play mini golf, or head for the rides at the Miracle Strip.

One night, while poking around in Target, I almost bought a new nursing bra. I was still nursing Eleanor, at two-and-a-half, and my bras were a little worse for wear. I picked up a bra that looked comfortable, but quickly put it back on the rack. What if I have cancer? I thought. I’ll have to wean her for radioactive iodine treatment, and this will be a waste of money. I know some people would say I was long past the time to wean, but we had both enjoyed our extended nursing time. I had nursed each of my children longer than the one before, finally coming to the full realization that the way our culture does breastfeeding is WAY outside the norm for all cultures and all times.

On Thursday I still hadn’t heard anything, so late in the afternoon I called the front desk at Dr. G’s office to see if they could tell me anything.

The very friendly staff person took a peek in my file on the computer. “Well, it looks like we got the results in yesterday, but the doctor hasn’t reviewed the results yet.” It relieved my feelings a little to know that the report hadn’t just been sitting in Dr. G’s inbox all week. What she didn’t tell me was that Dr. G had just left for a long weekend with his family. He wouldn’t be reviewing that report until sometime next week. I thought, surely I’ll get a call before the end of tomorrow. I had no idea I still had almost a week before I would learn what the ultrasound said.

By this time, I was starting to get phone calls and texts from friends and family. Have you heard anything yet? When will you hear something? Why is it taking so long? I was glad to know that my friends cared for me, but it also ramped up my anxiety over not hearing from Dr. G. They think I should have heard by now, too, I thought.

Friday came and went. When we went out for dinner Friday night, I realized my chance to learn something was over until Monday. On Saturday, our extended family headed home. Rusty’s brother, still dealing with his neurological problems, was finding it hard to get comfortable on any of the family cast-offs that supplied the beach cabin’s furniture, and was ready to get back to his recliner.

We packed up and left for home on Sunday. Monday we worked on getting back into our regular routines—but there was still no call from my doctor’s office. My family and friends, however, kept calling. I hated not having any answers for them. I knew that a biopsy was almost certainly my next step, and I was eager to get it over with. I was on and off the internet, reading bits about nodules, ultrasounds, and biopsies. I even found out that there has been a fair amount of research done on the anxiety caused by waiting for medical test results!

I was spending increasing amounts of mental energy trying not to stress about what my ultrasound looked like and when I would hear about it. I carried my phone with me as I moved from room to room in the house, so that I wouldn’t miss a call.

On Wednesday I got to talk with my dear friend, A. A few years ago she’d had surgery to remove half her thyroid for a nodule that was causing the gland to be overactive. I asked her what she had thought of her endocrinologist. I was determined to find someone good to go see, and wanted to be ready with a name when I got a call from Dr. G.

Later that day—one week after the office had received the ultrasound report—I finally got a call from one of Dr. G’s staff. She was very kind. She informed me that Dr. G thought I needed a biopsy (Duh!) and wanted me to see Dr. B, a local ear, nose and throat specialist. I was kind of surprised—I had expected to be referred to an endocrinologist. She reassured me that Dr. G had a really high opinion of Dr. B and sent people to him all the time. I asked if she could give me any details about what the ultrasound report actually said. “I don’t have those details. You’ll be able to talk to Dr. B about it when you see him.” So my assignment was to wait on a call from Dr. B’s office to schedule an appointment.

When I got off the phone with her, I looked Dr. B up online. He was in practice with two other doctors. I saw that “thyroid nodule” and “thyroid cancer” were both listed in the conditions they treated. One thing I really liked was that I would be able to email questions to Dr. B once I was officially his patient.  In his picture on the website he looked kind of like an ex high-school quarterback, and maybe not suitably nerdy.  I decided not to hold that against him.