Tuesday, July 25, 2017

Palatable and Piecemeal

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!    


10 comments:

Steve Hill said...

I'm sure this writing must be cathartic for you, and it's enormously helpful for those of us who care and are concerned about you. Thanks so much. Still praying!

Steven said...

I am imagining you sitting down having this conversation with Jesus, the Source of all Wisdom and Life and Power and Blessing. I picture Him listening intently, like your very best friend. I imagine Him imparting to you all that you need, and much much more. Prayers and love to you today...

Anonymous said...

You are one strong woman!! So thankful you have Josh by your side. You two and your kiddos are being held close in prayer by many! Lean into whatever help you get and ask for any help you may need. We are here!! Love you friend!! Tania H.

Amanda said...

That is a lot of information. Thank you for sharing it all with us. Hugs to you, my friend.

Anonymous said...

We are all hear for you and praying for you. I cant even began to imagine what your going through. You are a strong woman and a fighter. Keep listening to that song that I sent you!! Hugs and kisses!!! Meghan Lee

Anonymous said...

Thank you for sharing. I appreciate your vulnerability. I am mindful that you are processing out loud. However, I want to remind You of some truths.

You aren't that strong, but Jesus is ��.
You may have a reason to worry, but you have no need to worry.

Of course you want to control because you are normal. Trust, faith, and surrender do not come from your own strength but from God.

Anonymous said...

Very interesting about the timelines. When you first mentioned you had to be away from your children, I thought it would be longer than 3 days, so that's good news! Keep focusing on the good! ♡ Hugs! --Jennifer

megan said...

Mr. Hill, it makes me so happy to know that you are thinking of me and praying for me! I hope you are well!

megan said...

I also imagined Jesus sitting down across from me at lunchtime today while I was thinking about all this stuff. Like father like daughter!

megan said...

I also thought it would be longer than three days. I still have my doubts. I'm going to call the Nuclear Medicine department at the hospital to doublecheck.