So most people, after they have surgery of any type, can’t wait for their scar to go away – for whatever the reason. They want to get past it, they want to forget, they want to have nice looking skin again, or they simply just don’t want the scar…but that is not the case for me.
I don’t want my scar to go away. Yep, I DON’T want it to go away. I’ve seen so many people on my support groups or other Survivors that I’ve met that have given me suggestions on what I can used to make it fade away OR go away almost completely, like vitamin E or over the counter scar creams. I always smile and say thank you for the advice but I have no intentions of trying any of it.
To most, this might be silly, especially since I have a fairly big scar in comparison to most ThyCa Survivors with the typical TT. I get stares all the time, most kids are horrified – they point and want to avoid me (especially right after my surgery). I know prior to my surgery, I was terrified of how it would look or how long it would take before it would heal. I bought a scarf to cover my neck, mostly for my kids so they weren’t terrified when I first got home but the day they came to the hospital, I didn’t hide it quick enough….they saw it and they were scaried to death. Conor wouldn’t even come near me and Mileigh just kept crying and pointing at my neck. Needless to say, I lost it…I hated that my kids didn’t want anything to do with me even though I understood their fear.
Now my kids love showing off my scar and explaining that my butterfly was taken out – but more than anything hearing the kids talk about how strong I am – it brings tears to my eyes. I know my ThyCa journey is only a small part of who I am and a short chapter in my book of life BUT I can’t express how much I’ve changed in the last year. I feel that my scar is the constant reminder that I need on my hardest of days or even on my best days. But I love when people ask me about it now – I’m not ashamed because it brings awareness to a cancer that is often thought of as a “good” cancer.
So scar please don’t go away! 🙂
This pic was the day of surgery and then 4 weeks later.
And this is today – just over 11 months post-op. Just craziness!!!
So once you’ve had Thyroid Cancer, you will have to undergo annual Whole Body Scans (WBS) to verify when there is No Evidence of Disease (NED) and/or to confirm there is no reoccurrence. It is a very intensive process that takes a couple weeks of the Low Iodine Diet (see previous post for more info) before you can even start your scans.
Most Nuclear Medicine departments follow a very strict schedule and here is mine:
- Start Low Iodine Diet (LID) a minimum 2 weeks prior to week of appointments.
- Day 1: Thyrogen shot #1 and blood work (30-45 minute appointment)
- Day 2: Thyrogen shot #2 (15 minute appointment)
- Day 3: Tracer dose of Radioactive Iodine (RAI) and blood work (30-45 minute appointment)
- Start Isolation for 48 hours (separate sleeping arrangements/bathroom, no less than 3 feet distance from any person/animal, and only around others/share room for up to 1 hour with distance).
- Day 4: Isolation
- Day 5: Whole Body Scans (WBS) and blood work (2 1/2 – 3 1/2 hour appointment)
- Discuss results of scans with Nuclear Medicine Doctor and next steps.
*All of these appointments require for me to drive/be driven (thankful for the HOV lanes!!!) approximately 58 miles (one way) which can take 2 – 2 1/2 hours worth of traffic into Washington, DC. Totally worth it to be seen at one of the best Thyroid Cancer Centers in the country BUT does not allow for me to work during this week.*
So this year, I have to schedule 2 WBS’s per the Nuclear Medicine team and my Endo, 6 month appointment – October 2015 and 12 month appointment – March 2016. So I originally had my RAI back in March and had to conduct 2 scans – one after the tracer dose to see how much my cancer has spread to determine how much radiation is needed. Then the second was after my full dose to see if anything else showed up (this sometimes happens if the tracer dose isn’t enough to get elsewhere in the body to light up the scans. Because they found it in my lungs after my full dose, obviously they gave me the correct dose to accommodate for just my lymph nodes, extra thyroid tissue and the tumor that was found in my neck behind my thyroid bed. Therefore, the Nuclear Medicine team wanted to bring me back at 6 months to see if I needed another dose solely for my lungs. The radiation takes a full year to work but they wanted to double up (if needed) because my cancer has been pretty aggressive.
With all that being said, my WBS came back and my lungs are now CLEAR so no extra dose is needed!!! Whooohooo!!! They also so that the tumor behind my thyroid bed has shrunk and it is already only 1/4 of the size it was back in March so the radiation is doing its job and I still have 6 months to go!!! This makes me super confident that I will get a NED (No Evidence of Disease) come March 2016. I originally said I would wait for my ThyCa tattoo until I get those results but I’ve finally realized – I am a survivor because I live with this and fight everyday. So hopefully, I’ll have tattoo pictures in the coming months…. 🙂
I am still waiting to get the blood work results from my testing week – it was time for another tumor marker and to see what my TSH levels are to ensure my thyroid hormone medication is still where it should be. I am also going to request that I change to Synthroid and something to help with my Free T3 (l have done my research and received advice from fellow ThyCa survivors that it helps with energy levels). I’ve been on Levothyroxin since my surgery (December 2014) and my energy levels are for the dogs….I know I’m not going to feel my best but I’m willing to see if this helps it at all!!
Thank everyone that helped us last week with all the scan appointments – between going to/from the appointments, getting the kiddos on/off the bus, helping with the kiddos while I was unable to care for them during my isolation period, and of course, the thoughts and prayers!! I couldn’t be more thankful for my village!!!