Get by with a little Help
I survived the isolation! On June 11th I swallowed a pill containing 150 millicuries of radioactive iodine. It was, for the most part, and uneventful start. I went in and saw my fave nuclear tech, Jerry, who went over the precautions with me. Jerry went into another room and then came out and gave me the pill to swallow. He also let me see the insanely heavy tungsten metal container that held my pill! It was at least 40 lbs! Then he escorted me to another room for a 1 hr observation period to make sure I did not have any adverse side effects. Afterwards - I cautiously walked out of the hospital - avoiding people- and drove home.
Dave and I had already prepped and stocked our basement and when I went down there to settle in for the week-long isolation he had a candle burning and music playing. It was so sweet!
The first 48 hours were probably the most "eventful" as I had to suck on sour candy every hour to try to keep my salivary glands moving. I'm not a fan of sour candy so Dave and I had gone to Sweetish for sour gummies the week before. By the time the week was up- I was so sick of candy. The first 2 days of isolation I was also still on the low iodine diet and I developed a metallic taste in my mouth as well as nausea.
Eventually that went away and by Friday I could eat regular food for the first time in 20 days! Dave "took my order" and delivered pancakes, eggs and bacon outside ny door, then a Carusos sub for lunch. Over the next few days I enjoyed homemade lasagna that he made and some delicious takeout as well as a distanced backyard picnic! I definitely made up for lost time with my favorite foods!
By Saturday, extreme exhaustion settled in and I was unprepared for that. It was an exhaustion I cannot describe. I'm a person who tends to get restless and bored. This kind of tired was like nothing in the world could make me want to move from that recliner. I just wanted to shut down. That lasted several days and I still feel like I'm struggling to regain energy even today.
Wednesday morning, I was able to leave the house for the 7:40 am radioiodine scan. I sat in the back seat and Dave drove me in. Afterwards, I was given clearance to resume normal activities and exit isolation, so Dave and I went to Park City diner for breakfast.
While there I realized I had a voicemail and it was my Dr's office. This had me very nervous. After 15 minutes I finally got through only to find out it was an old voicemail and my phone had glitched and sent the voicemail to the top of my screen. I was so relieved it wasn't anything concerning! While we were eating breakfast, my results came back on my phone, and by the end of the day the Dr sent a message confirming that there were no changes on this scan compared to my last scan. This is good news!
Radioactive Iodine is a long game treatment and can work in my body to kill cancer cells up to 6 months. I was so relieved that the full dose of radioactive iodine did not "light up" any additional areas in my body. I will now wait and see my endocrinologist on July 1st for next steps on monitoring and treatment and find out how long we wait to see how the RAI treatment has worked.
It's hard to believe I have only been out of isolation 1 week. It's been a whirlwind and my body is still tired and struggling to keep up. I can notice this just by how slow I walk.
During the past week out of isolation, I was able to celebrate Dave's birthday, attend a nice sangha retreat with Dave for a few hours over the weekend and see friends, and I even mowed the lawn and got to take care of the chickens. I keep pressing on!
On top of the exhaustion, I do have some continued side effects from the RAI. My left salivary gland has slowed in producing saliva and my taste buds are greatly diminished. The last couple of days I have also had the metallic taste return. As per what I've read, this is all normal for the treatment and may take weeks or months to improve.
Throughout isolation I watched a lot of TV but also focused a lot on listening to some self care books that focused on relieving tension in the body. I listened to Healing Back Pain by Dr Sarno and the Emotion Code by Dr Nelson. While I didn't get any great neck pain/arm pain relief from this, I did notice it helped me "destress" some of my muscles which was helpful for rest which I greatly needed then and still need now!
I was able to get an MRI on Monday with Orthopedic Associates of Lancaster for the ongoing neck and arm pain I've been having. I also got into my chiropractor, Dr Andrew Ashton at A Therapeutic Effect, which has helped to manage and improve my pain significantly.
From the MRI:
Good News: After messaging the Endocrinologist office they do not think the cancer is involved with this injury/pain!
Bad News: The MRI showed a Moderate-sized disc osteophyte complex on the RIGHT side at C5-C6 extending out laterally causing severe RIGHT foraminal narrowing.
2. Minor central bulges at C4-C5 and C6-C7.
So what does this mean? Today I met with Dr Nguyen (fantastic BTW) at OAL and had a great consult. She is the only doctor in the county that does Epidural Cortisone injections which she initially recommended. She went through my images and showed me pictures of my healthy spine and then my C5/C6 which is in bad shape. Upon further review, it appears an artery is very close to the nerve. Combined with my Chiari Malformation Type 1 , this may disqualify me for this procedure. She is going to consult with her mentors and also refer me to a neurosurgeon in the meantime for a consult. That's not the direction I want to go for several reasons. However - I may not have a choice if I want to avoid permanent nerve damage in my arm/hands and reduce my pain.
For now she's set me up with better pain meds to assist with the current cocktail I'm on which has been helping me sleep almost through the night. I'll still be able to drive on these meds too. I'm grateful. So for now. No answers or direction. Just meds, prayer, faith and hope.
Side note: I also learned she does these types of injections for shingles pain which could greatly benefit me in the future with my recurring shingles!
I'm starting to do some normal back-to-life things this week and am enjoying easing into these. It's definitely taking a lot of energy and focus but it's a great distraction from the constant ruminating on pain, dr appts, and next steps in my health journey.
I want to give a quick shout out to my amazing pharmacy as well - Hillcrest in Columbia. Melissa and her team are phenomenal and kind. Every time Dave and I go in they are helpful and ask about how we are doing and check in. It's a great relationship and they are so personable. I really love them and they've made this journey a lot easier! And yay for hitting our deductible so now no more med co-pays for the year!
This year continues to evolve in new and unexpected ways both personally and in the world. It's hard to not focus on the struggles with my health and the hardships happening all around us and I'd be lying if I said I didnt spend most of my day frustrated in pain. But when I look for the helpers I see them:
- Our neighbor who weed wacked the yard along the road for us- unprompted - to help Dave out
- My work which helped me get all of the short term disability paperwork approved, sent so many gifts of support including a dog poop pickup service for over 2 months!!
- Numerous friends and family who sent doordash gift cards and delivered meals so we didn't have to cook
- Friends who sent flowers and cards and notes to brighten up my day
- Friends who sent many wonderful books and puzzle books to keep me entertained
- Our family who continues to lift us up in prayer and love and visits even when going through their own battles
- Dave who has been an amazing caretaker and champion of looking for the good in the dark times while at the same time investing in his own health
- The great group of thyroid cancer survivors I've connected with who I can go to anytime with any questions
- My friends - who check in, send memes, love, prayers and so much more.
I'll try to keep looking for the helpers.
To be a helper.
And to also keep helping myself through this time. We are our greatest advocates.