My mom was diagnosed with thyroid cancer in 2016. And yes, you are remembering correctly. My dad passed away from lung cancer this past June as well. More on that in another post.
Back to mom: A routine checkup with her new nurse practitioner detected a lump or a nodule on her thyroid. An ultrasound and needle biopsy (yes that it several giant needles into her neck to get a sample of the tissue while she’s awake) came back “inconclusive.” Not positive or negative, inconclusive. In other words, it might be cancer.
Mom had a choice: remove the entire thyroid, remove half of the thyroid where the nodule is, or monitor it. She opted to have the thyroid removed.
Surgery was minor. She recovered well. A few days later, the pathologist determined it WAS cancer and that it had just begun to grow into the blood supply to her thyroid making it Stage 3 Thyroid cancer. She was 50 years old then. And to think she had the choice if she wanted to remove it or not. We are so glad she did.
So mom has no thyroid. She does not want ANY thyroid tissue to grow back. Therefore she was prescribed A HIGH dose of Levothyroxine.
Levothyroxine is a pill that tricks her brain. It tells her brain to stop making any thyroid tissue. It says “Nah, we are good! We got this! Don’t stimulate the thyroid!” Which would in turn grow thyroid cancer cells. So during her recovery mom felt “normal” because her Levothyroxine was replacing the hormones her thyroid used to send.
Her surgery was in February and her cancer treatment/radioactive iodine was in April after her recovery. Mom had to STOP taking her Levothyroxine. For about 3 weeks mom lived without any thyroid hormones. It was hell.
Mom describes the symptoms she had when she was completely without any thryoid hormones as being “dry.” Every part of her body ached, every joint squeaked, her mouth and eyes and nose was so dry, she felt constantly dehydrated and constipated. Depression set in. Mom cried a lot. She felt so foggy and dizzy and whoozy and AWFUL. It was SO hard for us to see her like that. And then there’s the diet…
I’m trying to explain this the best way I can: Any cancer cells in her body needed to be completely starved of ANY iodine. That way, when mom takes the radioactive iodine, any thyroid cells or cancer cells are SO desperate for iodine they EAT the radioactive iodine when she takes the radioactive iodine pills.
That means she had to be on her very strict diet on top of having NO thyroid hormones (read more about that here: http://www.joscountryjunction.com/the-diet/ ) AND she had to be completely off of her thryoid replacement medicine.
Mom eventually took the radioactive iodine and was able to restart her hormones. Mom’s blood test, thyroglobulin tumor marker (let’s call it her TTM because that’s too long of a word to type, indicated the thyroid cancer had been TOTALLY irradicated as of October 14th, 2016. That means her TTM was 0.00 about 10 months after diagnosis.
Can you believe that is CARVER she is holding?!
Here’s a picture I snapped the day we got the good news:
In the meantime mom had had blood draws every 6 months to monitor her thyroid cancer. Her TTM began creeping up about a year after she took the radioactive iodine.
At first it was just minor – detectable at 0.04 or something. But it began doubling every 6 months. They kept telling us not to worry too much about it, we aren’t worried about a reoccurrence until it is above 5 or 6. At level 10 there is a reoccurrence somewhere. Every 6 months mom would go on her iodine free diet, get the full body scan, PET scan, get a chest CT scan, get the shots, get her blood drawn and usually get some kind of biopsy.
Over and over again mom’s scans came back clean and the biopsies came back negative. We played the “wait and see game” watching her TTM numbers double until they were 6.2 last April.
NONE of the scans showed anything. They have been watching the cancer grow and her numbers rise but they can’t find where it is in her body. About a month ago, moms number had gone from 6.2 in April to 17 in September. Mom had her blood redrawn on Monday and it was 26.
Her TTM number went up 9 points in less than a month. The cancer is back and we have to find it before we can treat it. We have to find it and surgically remove it before we can give her the radioactive iodine to give the best chance at fighting the cancer.
Which brings us to today: Friday. October 18th. Mom will be getting ready for Lacrosse as you read this. She has her scan in the morning, then she is going to EAT real food, and results in the afternoon.
We hope they find the cancer.
We hope it can be surgically removed as much as it can be.
We hope for strength to get us through whatever the results say.
I say we, because mom’s fight is our fight. In this family no one fights alone. We are #KramerStrong
If you have a Kramer strong t-shirt – wear it today! I’d love to see it and I know mom would appreciate the cyber support! <3
P.S. Just reading back through this it doesn’t seem to do justice to all that mom has been through in the past 3 years. This is a very condensed version. This doesn’t include all of the tears, the wondering, the questioning, the fear, every needle, medication, poke and prod.
“I’ll paint the kitchen neon, I’ll brighten up the sky
I know I’ll never get it, there’s not a day that I won’t try”
– Soon You’ll Get Better by Taylor Swift ft. The Dixie Chicks
She wrote this beautiful heart wrenching song about her own mother’s battle with breast cancer and it really hits a nerve. Get your tissues guys.