Wednesday, October 12, 2016

RAI and scar management

It's been a while since the last update and I've been getting texts and calls to see how I'm doing, so I thought it was probably time to inform everyone how things have been going.

On Sept 27th, I went to see my ENT for my final post-op appointment. We discussed scar management and I was instructed to apply Mederma three times a day and massage the scar each time I apply the cream for 6-8 weeks. This should allow the scar to fade into my formerly existing neck crease over time in hopes that it disappears completely. Luckily, in PT school, we learn about scar massage and have to teach it to post-op patients in the clinic, so this wasn't anything new to me. I have doubts though that my scar will become "invisible" per se, but I know it takes a long time for it to look better than it does currently. Also during this appointment, I told him that I was a little nervous that I wouldn't be eligible for the radioactive iodine (RAI) treatment that Friday (Sept 30th) because I had still been feeling pretty normal. He told me that the blood work will determine whether or not I was ready, so I can't ever go by how I feel. According to members of the thyroid cancer community as well as other bloggers, before going through RAI, you go though a period of what is known as "hypo-hell". Symptoms during hypo hell can range from extreme fatigue, lethargy, lack of joy, hazy thinking, muscle aches, nausea, insomnia, flu-like symptoms, forgetfulness, brain fog, and emotional challenges (depression, mood swings, etc). Many people need to stop driving and get help with children during this hypo hell period. I really thought that since none of this applied to me, that I really wasn't ready. I went for my blood work on Wednesday and trekked over to the endocrinologist's office early on Friday since my appointment was at 7:30am. I hadn't received a call from the office saying whether or not I was good to go, so I was prepared for them to tell me anything. The doctor came in to the room and told me that my blood work came back in favor of doing the RAI (my thyroid stimulating hormone (TSH) was in the 50's and it only needs to be above 30 for being eligible for the RAI. By the way - normal TSH levels are between 0.4 and 4 to give you an idea for how out of the range you need to be in order to be eligible). When you don't have a thyroid or your thyroid isn't working properly and you are in hypothyroidism, there is little or no T3 or T4 that is being released, so your anterior pituitary releases TSH because it's trying to stimulate the thyroid to release T3 and T4 to achieve homeostasis.  The more TSH you have, the more hypo you are. Iodine is absorbed by the thyroid and thyroid cells, so you want to be in hypo and "deprived" of iodine so there is more chance of your body up-taking the radioactive material and killing any remaining thyroid tissue and cancer cells. (Thank you Dr. Katy Mitchell for teaching me this in Internal Medicine because the endocrine system really makes way more sense now that I have to go through all of this!)

Anyway, moving on...
The doctor made sure I knew all the precautions and took me to a separate room and watched me swallow the 50 mCi radioactive iodine pill. I sat in that room for about 15 minutes and he came back to check if I was radioactive by checking with a Geiger-Mueller tube or Geiger counter.



He said I was good to go and I went home. When I got home, I packed up all of my things, loaded them into my car, wiped down every single thing I touched, went to Kroger to pick up my levothyroxine (thyroid hormone replacement) prescription and headed to my dad's house where I stayed the entire weekend from Friday morning until Monday day. Some of the precautions I had to take were to stay 6ft away from everyone, wash hands before and after every single thing I did, flush the toilet twice, wipe down the toilet after every use, use separate towels and washcloths, let the water run for a few minutes after washing my hands, brushing my teeth, and taking a shower, and not share dishes/silverware with anyone. I also had to wash all of my clothes and towels that I used during the quarantine twice and separate from other loads of laundry. Since I have a clingy 4yr old that can't stay 6ft away from his momma for 3 days (mostly because he wouldn't understand), I stayed away from them all weekend. My dad was going out of town anyway, so I had his house and theater room all to myself.



Sunday, Oct 2nd, I was instructed to begin my levothyroxine medication and I was told I could resume my normal diet. I had been feeling pretty good all weekend except for a day of low appetite, a bit of loneliness (which was remedied by chatting with people on the phone, Skyping often with my husband and son, and watching the rest of GoT), and Sunday feeling pretty tired due to some insomnia and not sleeping well on Saturday night. I got some good rest on Sunday day and Sunday night, so Monday I felt normal again. I was also excited to be able to go home and see my family. Even though I was cleared for going home, there were still some precautions I had to take upon my return. My doctor suggested that I use a separate bathroom for another few days and I was told to sleep in a separate bed from my husband for a week and child for 2 weeks. This has been the hardest because my child wakes up easily when he is left to sleep by himself (hello 5am wake ups) and I never really can sleep the best when I can't sleep in my own bed. Needless to say, everyone was happy to have me home...even my cats.



I've been taking my son to daycare during the day, so there's not much time for him to be close to me except for about 2 hours or so in the evenings, and even then, he's not sitting on my lap the whole time.

Yesterday, I had my nuclear body scan that lets the doctor know if there's any remaining thyroid tissue or cancer cells. I laid down on this machine and it took about 45 minutes to do the entire procedure. I had to lay still (nap time) and the machine very slowly moved me while taking pictures and then the last 10 minutes was where the machine stayed in the same spot and was just a scan of my neck and chest area. Normally, there's an injection of iodine that is done a few hours prior to the scan, but since I had taken the RAI on Sept 30th, there was no need for me to get the injection. I will have to get the injection next year when I have my follow up scan to determine if I've remained cancer-free. After the scan was over, I asked the technician to use the Geiger counter again to see how radioactive I still was. She had to be about 2 inches from me in order to pick up any radioactivity, so she said by Friday, I'll be fine to resume sleeping in my own bed with my child. Yay for sleep! And hopefully I'll get the results of this scan by the end of the week.

Here are some scar pictures to show some of the progress over the last 2 weeks using the Mederma cream and doing the scar massage.


Sept 27th - Day 1 using Mederma cream


Oct 4th - Day 8


Oct 12th - Day 16

While it is lightening up a bit and it's definitely less red, there's still a ways to go and I want it to be less bumpy and raised.

Today is also day 11 taking the levothyroxine. I have to take it in the morning about an hour or so before I eat anything. That's been slightly annoying and I will have to really get used to it because I like eating something when I wake up in the mornings. Once classes start back up next week, I'll probably have to pack my breakfast to go and either eat in the car or once I get to school. Also, since I didn't really feel weird and super hypo before taking the medication, I haven't really noticed a difference hormone-wise. I do feel like I want to get back into working out on a regular basis (which will be easier to do once I have access to my school's gym again next week), so there's that. I feel like I'm super weak because I haven't done any of my strength exercises (or cardio for that matter) since before my surgery. I really need to get back on my MommaStrong workouts again.

My next appointment is at the end of December with my endocrinologist to check my hormone levels and see if there's any medication adjustment that needs to be done. He put me on a pretty aggressive dose to start with (150mcg) to throw me into hyperthyroidism and will back me down from that depending on my blood work mid-December. I will always rest in a slight hyper state because he says it actually helps keeps cancer cells from returning.

There's not much else to report for now, so, all in all, things have been going well and I've been feeling pretty good overall.

Until next time!

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