It has been nearly exactly 5 years since my last round of radioiodine for thyroid cancer, and I recently returned to Mayo for my now annual appointment. Things have been largely going well. I had a deep vein thrombosis back in September, which had me off work for a bit and caused my primary doctor to take me off all hormone replacement therapy. This led to complex migraines and two really scary episodes landing me in the emergency room thinking I was having a stroke. Taking a lady off of estrogen suddenly, essentially inducing full menopause over the span of a single month, is HARD on a body, let me tell you. Plus weight gain, after I had worked so hard to lose 50 pounds. Just irritating but besides the point because I'm finally at the point where I'm feeling good again and "stabilized". So bring it on, Dr. Stan the Man.
I got to Mayo and had my blood work and ultrasound, and then headed off to my visit with Dr. Stan. He was awesome as always, reviewed my ultrasound, told me my TSH was too low and my medication too high. It's non-detectable, my Thyroid Stimulating Hormone. I don't want anything stimulating the remaining cancer. He wanted to lower my thyroid meds, as having such a high dose can lead to osteoporosis and be hard on my heart. But it's suppressing the cancer! And also... it's my metabolism, levothyroxine is, and I JUST stopped hormone replacement therapy and got re-regulated. I begged him not to change anything. PLEASE. Dr. Stan is a great doctor because he listens to his patients, and he listened to me. I told him I had had a bone scan and my bone density is just fine. I take calcium supplements and vitamin D and exercise regularly and visit the sun to keep my bones strong. My heart is good. "As long as you understand the risks," says he. "We can keep it as is for now." THANK YOU, Dr. Stan. Thank you for listening to me.
Dr. Stan reiterated that the lymph node we were most worried about was on my laryngeal nerve, the one that innervates my one remaining vocal cord. The one we can't do surgery on because of the risk of paralyzing that cord and leaving me unable to talk, breathe or swallow (hello feeding tube and tracheotomy). That's the one that if the cancer grows and invades the nerve will also lead to that same outcome. The precarious one. There are two other areas with cancer deeper in my chest under my breastbone, but those aren't in such a dangerous place. There's one along my esophagus and one by my aorta, but there's a lot of room in there, apparently, so those could grow and not hurt anything for a good long while. It's mostly the one on the nerve that he's concerned with. I've understood this for years. It's what we monitor. And for five years it's behaved itself.
But then Dr. Stan made an offhanded comment that kind of took me aback. My tumor marker blood work had not yet come in, so he was just making a conjecture. "It's been five years since your last treatment, and we got a good five years of suppressing the remaining cancer. That's more than I could've hoped! That's excellent. Your last tumor marker reading was 2.4. So if it goes up to 3, I think we should do another round of treatment and zap it again to see if we can get another five years."
Wait, what? The thought of more treatment had not even entered into my mind. He said it so casually, like it was no big deal, but treatment for me IS a big deal. I gained 20 pounds after each round of radioiodine. There is preparing for six long weeks ahead of time, the low-iodine diet and going off meds, and then isolation while radioactive, and not being able to work first because of feeling horrible and then because of being radioactive. I work with small children, so would have to stay away from them even longer than staying away from adults. It's a big deal, that takes a bunch of planning and PTO and coverage and all the things and I just hadn't even THOUGHT about any of that for such a long time! The idea of it took me aback, that he would even consider it. I thought I was pretty much done with treatment forever, and he made it sound like I was on borrowed time. Just surprised me.
What could I say? Just "OK. If it goes up, we'll do more treatment." UGH. I left his office and drove to Minneapolis to catch a flight later that evening to my cousin's funeral in Seattle. But I kept checking my Mayo app for thyroglobulin tumor marker results. Refresh. Refresh. Refresh. Come on baby. Refresh.
I was in the middle of Ikea next door to the Minneapolis airport when I got a notification. "New Test Result". I couldn't open the app fast enough. Thyroglobulin....... 1.7!!!!!! ONE POINT SEVEN!!!!! It went DOWN! Hallelujah! That's the lowest it's EVER been! Five years after my last treatment, and starving that cancer is causing it's long slow death. Thank you Lord! I was so happy. So So So happy. It's not gone. But it's dying. I'll take it.
And I don't have to go back and think about all this for another whole year. Life is good.
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