Today Joshua and I met with my endocrinologist to talk about radioactive iodine treatment. My providers have been great. They are kind, engaged, and positive. But today I feel heavy. Since the first time I brought up my enlarged thyroid with my primary care physician, the theme of all of my interactions with all of my different doctors has been: "You have nothing to worry about!" Today was more of the same, except now I'm treating thyroid cancer and about to make a foray into the world of nuclear medicine. The cheery "everything is going to be fine!" perspective is starting to feel incongruent with my experience, since I have heard that since day one yet at every turn end up being on the wrong end of the statistic spectrum. I am staying positive overall, but today was just a rougher day.
My endocrinologist shared with me the dosage she has chosen for my treatment based on the pathology report. Right now it is at the highest end of the "moderate" dosage range; she will do a localized scan of the thyroid bed just before the treatment and hopefully that does not change her mind on the dosage because more radiation than what she has already prescribed ventures into "increased chance of developing leukemia" territory. Other than that, she has limited knowledge of nuclear medicine and could not provide many details about what the experience will be like. It's all piecemeal; everyone is specialized for their particular part of this process and cannot speak to what the other doctors do. Not that I would want them to be advising me outside of their specialty-- it's just frustrating to take this process one little breadcrumb at a time. But that may be a larger metaphor for life and my control issues. ;) I'm a planner to the max and find it difficult to plan without being able to visualize the whole process and its contingencies.
She strongly recommended that I use recombinant thyroid stimulating hormone (TSH) in preparation for the RAI instead of withdrawing off of my medication for weeks prior to the treatment. Before RAI, your thyroid cells (or what is left of them, in my case) should be as stimulated as possible. So you can either do this "naturally" by withholding thyroid hormone (in my case, levothyroxine) from your body-- which forces your pituitary gland to send out increasingly desperate messages to the body that it needs more-- and your TSH level rises and rises, trying to get your body to fix the problem... or you can use the drug to force an elevated TSH. The big caveat to using the med withdrawal method is that the higher your TSH level gets, the more the cancer will grow, which is not something you would necessarily want to foster over a four to six week period when you could spend two days injecting yourself with synthetic TSH to get to the same goal level. Another benefit of this is that I don't have to spend weeks feeling terrible becoming severely hypothyroid. I am generally leery of shortcut methods, but this seems to be well-researched and without side effects, so count me in.
After the treatment I will have to be away from my children for three days. Five days after the treatment, I will have a whole-body scan to see where I "light up" (a.k.a. where the cancer has been). They use the radiation that is preexisting in your body from the RAI instead of giving you more for the scan. Josh asked the doctor how it's possible for me to still be radioactive enough for it to show up on a whole-body scan as a diagnostic tool and yet safe for me to return as my children's primary caregiver two days prior to that. She thought that was a good question but didn't know the answer. I guess we will have to trust Nuclear Medicine on that one. The five-day-post-RAI scan won't tell us whether the treatment worked, only where cancer has been. I have to wait several more weeks afterward to take a blood test to see what my thyroglobulin levels are... this tells the doctor whether or not there are still thyroid cells (cancerous ones) trying to make a comeback. If the level is not zero or close to it, that means the treatment didn't get all the bad guys. In which case we would be looking at round two of treatment. We didn't go down that road; she was optimistic that this punch of radiation would do the trick.
So overall, a positive visit. We will schedule my RAI for sometime in August or September at the latest. I do have to be on a quite restrictive low-iodine diet for two weeks before the treatment. I am considering going radioactive on my birthday. That would be a memorable one!
Tuesday, July 25, 2017
Thursday, July 13, 2017
Thyroidectomy
My thyroidectomy four days ago was my first surgical experience, and my first true experience with anesthesia (other than two epidurals and one blissful sedation with propofol). It was different than I imagined. Way more intense, for my mind and my body.
I have to say, my hospital experience was fantastic. The day of surgery, everything from the moment I got there was timely, ordered, and professional, which inspires confidence when you are about to allow yourself to be cut open. All of the medical staff I met that morning-- my pre-op nurse, the pre-op nurse manager, the anesthesiologist, the CRNA, my OR nurse, and of course my surgeon, were warm and reassuring and present with me in our interactions. I spent the two hours before surgery trying to pee and being very nervous. For some reason I was fixated on the fact that I wouldn't be cathed during the operation and I didn't want to have an accident on the table. Despite Joshua repeatedly reassuring me that this would not happen, explaining that anesthesia "turns off" your body during the surgery, I suppose it was just what my nerves chose to center themselves on and so I probably made 18 trips to the bathroom.
Finally, it was time to go. Joshua kissed me goodbye, the CRNA slipped some versed into my IV and I was wheeled off to the operating room. The last thing I remember is laying underneath two very large lights and listening to the medical team inquire about one another's weekends. Apparently I scooted myself onto the operating table before they really knocked me out but I have no recollection of that.
The surgery took about two hours. My thyroid was very enlarged and in addition to the papillary carcinoma had an inflammatory Hashimoto's response to the cancer, which made it more difficult to remove. I vaguely remember stirring awake in the PACU, long enough to ask Joshua if it was cancer and repeatedly tell the nurse that it hurt. I received a nice dose of dilaudid in my IV and after that it felt like someone had placed sandbags on my eyelids. I spent the next several hours trying to wake up. When I finally did, I was on a general surgical floor and I had to go to the bathroom (surprise surprise). I tried to walk to the bathroom but was way too unsteady on my feet and nauseous from the anesthesia and pain meds-- I sat down on the toilet and promptly puked into a basin. Throwing up after you have just had surgery on your throat during which you were intubated... not recommended.
My nice nurse gave me some zofran for the nausea and morphine for the pain, and back into unconsciousness I faded. When I woke up again I really had to pee, but still could not go. Another trip to the bathroom ascertained that I was still unsteady on my feet and my body was pretty sensitive to the general anesthesia. The nurse offered to in and out cath me, which I agreed to because my bladder was uncomfortably full. It is a strange sensation to know you have to pee but to be unable to do so. People don't really realize this who don't work in medicine, but it is notoriously difficult to catheterize women. Thankfully, I'm married to an incredibly skilled ICU nurse so when my floor nurse couldn't get the cath (even as he gave her instructions), she asked him if he wanted to do it and so that was that. Thank you, Joshua. Sweet relief, I was finally able to pee.
I tried some Jello mid-afternoon but promptly threw it up. I was too queasy and sore from the intubation to swallow any meds, so I was kept on morphine for the rest of the day, which gave me a headache but dragged my body into the sedated state it needed to be in so that I could sleep off the rest of the effects of the general anesthesia. In between doses, my parents brought the kids up to visit during a period I was awake. I sat my bed up and tried to look as normal as possible (aside from the large bandage on my neck, and the drain sticking out of my hospital gown, and my IV), but I could tell they were scared to see me that way. Aidan warmed up once I began talking with him. Maddie looked intimidated the whole time, but took cues from her big brother. Olivia stared at me and cried when PopPop put her down next to me in the bed so I could hold her. I felt bad.
I was taken down to X-ray in the evening to get a chest film done to rule out cancer metastasizing to my lungs. I didn't know why I was getting a chest x-ray, so I asked the tech if it was to check for pulmonary embolism. She seemed surprised that I knew what that was (especially since I referred to it only as "PE") so she answered candidly and told me that it was to check and make sure there wasn't anything metastatic in my chest cavity. Then I freaked out inside and wished that I hadn't asked. Curiosity killed the cat.
By nighttime, I was ravenous. My mom had switched posts with Joshua at my bedside by that point, so she rustled up some chicken noodle soup for me, which felt divine on my throat. I ate two bowls before bed, and a roll that I begged her to go down to the cafeteria and find for me. I hadn't eaten in 24 hours and was getting a little hangry.
We both got two solid three-hour chunks of sleep that night between vital sign checks and need for more meds. I had to wear these leg compression wraps to prevent blood clots, and it was kind of like getting a calf massage-- I decided I would like a set to take home. Unfortunately, they had to stay. In the morning I switched off IV meds and started on an oral combo of Tylenol and hydrocodone, which is what I was sent home with to manage the pain. I feel like I was on a narcotic free-for-all during my hospital stay. But I am thankful that my pain was well-managed. It was much more painful than I anticipated, and my response to the general anesthesia and intubation was a lot more sensitive than I ever thought I would be. It took me almost a full 24 hours to recover from all that.
I saw my surgeon and his PA. The chest X-ray came back clear, and the nodules biopsied during the surgery were small. My surgeon seemed confident that I did not need to worry about cancer beyond my thyroid gland, but we will have to wait for the full pathology to be sure there are clear margins and to see if radioactive iodine treatment is indicated. He signed off for me to be discharged. My nurse removed my IV and the drain (which was the sickest feeling ever-- and I mean that in the literal sense. It felt like a snake was slithering around my trachea and being pulled-- painfully-- out of my skin. Ick.). I cleaned up and walked out of the hospital, steady again on my own two feet with my husband holding my hand in the bright July sunshine. It was very strange to me that 30 hours after a major surgery you can be back at home, but there I was.
The first two days post-op I needed the prescription meds to take the edge off the pain. The soreness from the intubation had passed, but had been replaced by the aching pain that you feel when you have a bad cut. Which makes sense, I suppose. On the third day post-op, the incision really hurt on the right side, with the pain radiating up to my jaw and down underneath my collar bone. Day four (today) has been the best day yet. I switched to Ibuprofen instead and it has done the job. I am sill very tired, but feeling better every day. I wonder when the incision site will not hurt anymore. It is still swollen, but looks good from what we can see peeking out from the steri-strips. My voice is back to normal. I'm so thankful for an excellent surgeon who protected those nerves. Before the surgery, my anesthesiologist told me that my doctor uses a specialized intubation tube that has sensors all over it, so if he gets too close to a nerve it alarms. I thought that was pretty awesome. My doctor had a fantastic personal record of practically 0% sustained nerve injury, but I still had to face my fears of my voice being damaged during the thyroidectomy. The risk was there. I'm so thankful that nothing happened to injure it.
In truth, I didn't know what to expect because I had no previous experience to compare this to. It has been painful and intense, but I feel I am making a strong recovery. And, I am proud to say, I have been able to swallow my daily dose of levothyroxine with just the smallest spoonful of applesauce. This is a big deal for a 31-year-old woman who has never been able to swallow pills. Thank God this pill is about the size of a baby aspirin. I'm not supposed to eat for an hour after taking it, so I really shouldn't be swallowing it with food, but my endocrinologist said that it would be alright and I am counting it as a huge win for myself.
Right now my own thyroid hormone is still circulating around my body. I won't be solely relying on the meds until about the two week mark, I think, so we will see then how I feel. Right now I am very tired, but I think that is the shock and trauma of putting my body through surgery more than anything else. I am hoping that after unknowingly living with Hashimoto's, I will feel better than I did before the surgery. The journey will continue, for sure, as I figure out the right dosage for optimal health and also the right medication. I will be honest and say that I have been hoping to get lucky and do well on levo from the start. Time will tell.
I have to say, my hospital experience was fantastic. The day of surgery, everything from the moment I got there was timely, ordered, and professional, which inspires confidence when you are about to allow yourself to be cut open. All of the medical staff I met that morning-- my pre-op nurse, the pre-op nurse manager, the anesthesiologist, the CRNA, my OR nurse, and of course my surgeon, were warm and reassuring and present with me in our interactions. I spent the two hours before surgery trying to pee and being very nervous. For some reason I was fixated on the fact that I wouldn't be cathed during the operation and I didn't want to have an accident on the table. Despite Joshua repeatedly reassuring me that this would not happen, explaining that anesthesia "turns off" your body during the surgery, I suppose it was just what my nerves chose to center themselves on and so I probably made 18 trips to the bathroom.
Finally, it was time to go. Joshua kissed me goodbye, the CRNA slipped some versed into my IV and I was wheeled off to the operating room. The last thing I remember is laying underneath two very large lights and listening to the medical team inquire about one another's weekends. Apparently I scooted myself onto the operating table before they really knocked me out but I have no recollection of that.
The surgery took about two hours. My thyroid was very enlarged and in addition to the papillary carcinoma had an inflammatory Hashimoto's response to the cancer, which made it more difficult to remove. I vaguely remember stirring awake in the PACU, long enough to ask Joshua if it was cancer and repeatedly tell the nurse that it hurt. I received a nice dose of dilaudid in my IV and after that it felt like someone had placed sandbags on my eyelids. I spent the next several hours trying to wake up. When I finally did, I was on a general surgical floor and I had to go to the bathroom (surprise surprise). I tried to walk to the bathroom but was way too unsteady on my feet and nauseous from the anesthesia and pain meds-- I sat down on the toilet and promptly puked into a basin. Throwing up after you have just had surgery on your throat during which you were intubated... not recommended.
My nice nurse gave me some zofran for the nausea and morphine for the pain, and back into unconsciousness I faded. When I woke up again I really had to pee, but still could not go. Another trip to the bathroom ascertained that I was still unsteady on my feet and my body was pretty sensitive to the general anesthesia. The nurse offered to in and out cath me, which I agreed to because my bladder was uncomfortably full. It is a strange sensation to know you have to pee but to be unable to do so. People don't really realize this who don't work in medicine, but it is notoriously difficult to catheterize women. Thankfully, I'm married to an incredibly skilled ICU nurse so when my floor nurse couldn't get the cath (even as he gave her instructions), she asked him if he wanted to do it and so that was that. Thank you, Joshua. Sweet relief, I was finally able to pee.
I tried some Jello mid-afternoon but promptly threw it up. I was too queasy and sore from the intubation to swallow any meds, so I was kept on morphine for the rest of the day, which gave me a headache but dragged my body into the sedated state it needed to be in so that I could sleep off the rest of the effects of the general anesthesia. In between doses, my parents brought the kids up to visit during a period I was awake. I sat my bed up and tried to look as normal as possible (aside from the large bandage on my neck, and the drain sticking out of my hospital gown, and my IV), but I could tell they were scared to see me that way. Aidan warmed up once I began talking with him. Maddie looked intimidated the whole time, but took cues from her big brother. Olivia stared at me and cried when PopPop put her down next to me in the bed so I could hold her. I felt bad.
I was taken down to X-ray in the evening to get a chest film done to rule out cancer metastasizing to my lungs. I didn't know why I was getting a chest x-ray, so I asked the tech if it was to check for pulmonary embolism. She seemed surprised that I knew what that was (especially since I referred to it only as "PE") so she answered candidly and told me that it was to check and make sure there wasn't anything metastatic in my chest cavity. Then I freaked out inside and wished that I hadn't asked. Curiosity killed the cat.
By nighttime, I was ravenous. My mom had switched posts with Joshua at my bedside by that point, so she rustled up some chicken noodle soup for me, which felt divine on my throat. I ate two bowls before bed, and a roll that I begged her to go down to the cafeteria and find for me. I hadn't eaten in 24 hours and was getting a little hangry.
We both got two solid three-hour chunks of sleep that night between vital sign checks and need for more meds. I had to wear these leg compression wraps to prevent blood clots, and it was kind of like getting a calf massage-- I decided I would like a set to take home. Unfortunately, they had to stay. In the morning I switched off IV meds and started on an oral combo of Tylenol and hydrocodone, which is what I was sent home with to manage the pain. I feel like I was on a narcotic free-for-all during my hospital stay. But I am thankful that my pain was well-managed. It was much more painful than I anticipated, and my response to the general anesthesia and intubation was a lot more sensitive than I ever thought I would be. It took me almost a full 24 hours to recover from all that.
I saw my surgeon and his PA. The chest X-ray came back clear, and the nodules biopsied during the surgery were small. My surgeon seemed confident that I did not need to worry about cancer beyond my thyroid gland, but we will have to wait for the full pathology to be sure there are clear margins and to see if radioactive iodine treatment is indicated. He signed off for me to be discharged. My nurse removed my IV and the drain (which was the sickest feeling ever-- and I mean that in the literal sense. It felt like a snake was slithering around my trachea and being pulled-- painfully-- out of my skin. Ick.). I cleaned up and walked out of the hospital, steady again on my own two feet with my husband holding my hand in the bright July sunshine. It was very strange to me that 30 hours after a major surgery you can be back at home, but there I was.
The first two days post-op I needed the prescription meds to take the edge off the pain. The soreness from the intubation had passed, but had been replaced by the aching pain that you feel when you have a bad cut. Which makes sense, I suppose. On the third day post-op, the incision really hurt on the right side, with the pain radiating up to my jaw and down underneath my collar bone. Day four (today) has been the best day yet. I switched to Ibuprofen instead and it has done the job. I am sill very tired, but feeling better every day. I wonder when the incision site will not hurt anymore. It is still swollen, but looks good from what we can see peeking out from the steri-strips. My voice is back to normal. I'm so thankful for an excellent surgeon who protected those nerves. Before the surgery, my anesthesiologist told me that my doctor uses a specialized intubation tube that has sensors all over it, so if he gets too close to a nerve it alarms. I thought that was pretty awesome. My doctor had a fantastic personal record of practically 0% sustained nerve injury, but I still had to face my fears of my voice being damaged during the thyroidectomy. The risk was there. I'm so thankful that nothing happened to injure it.
In truth, I didn't know what to expect because I had no previous experience to compare this to. It has been painful and intense, but I feel I am making a strong recovery. And, I am proud to say, I have been able to swallow my daily dose of levothyroxine with just the smallest spoonful of applesauce. This is a big deal for a 31-year-old woman who has never been able to swallow pills. Thank God this pill is about the size of a baby aspirin. I'm not supposed to eat for an hour after taking it, so I really shouldn't be swallowing it with food, but my endocrinologist said that it would be alright and I am counting it as a huge win for myself.
Right now my own thyroid hormone is still circulating around my body. I won't be solely relying on the meds until about the two week mark, I think, so we will see then how I feel. Right now I am very tired, but I think that is the shock and trauma of putting my body through surgery more than anything else. I am hoping that after unknowingly living with Hashimoto's, I will feel better than I did before the surgery. The journey will continue, for sure, as I figure out the right dosage for optimal health and also the right medication. I will be honest and say that I have been hoping to get lucky and do well on levo from the start. Time will tell.
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