I can't decide if I feel like a miracle has happened or if I'm stuck in my own personal episode of House. How I wish for Dr. House now. I'd like for him to walk in my exam room and blurt out that I'm going to live and I'm a sissy, to wimpy to ever make a good doctor, for being so freaked out. Alas, but that is not going to happen as I have stumped Washington University's physicians. Wash U? The med school that is so hard to get into that I didn't even send them an application! The gene people! The world renowned experts on medullary thyroid cancer and MEN (the syndrome not the gender - not even Wash U would try to figure out the gender) are not sure.
So now I probably need to back up and explain a few things. There are generally 4 kinds of thyroid cancer. Papillary and follicular are the two treatable kinds. They are made of cells that take up radioactive iodine and do not produce calcitonin. They don't grow very quickly and because they take up iodine they have a good treatment/prognosis. Medullary is the kind they think I have. It is formed from a different line of cells in the thyroid that do not take up iodine but they do produce calcitonin. It is still fairly slow growing, but is more aggressive than papillary or follicular. Its prognosis is varied. If it is caught while it is still in the thyroid or contained in the neck's lymph nodes than the prognosis is pretty good, but you still need to be monitored for the rest of you life. They usually do this by monitoring your calcitonin levels. If you are growing tumor, your calcitonin levels rise and I guess they do surgery or you know it is time to start getting right with Jesus. If medullary carcinoma shows up in distant places (not your neck or thyroid) the prognosis is bad. It won't respond to radioactive iodine, chemo or radiation. It might take years for it to kill you, but that seems to be the eventual prognosis. The 4th type is anaplastic. It is usually fatal and few people make it to the 5 year mark.
Sorry about the science lesson, but you have to kind of get the background to understand the story. Last Sunday I was talking to the music minister at our church. He has been through the cancer thing before and I knew he would understand. He looked at me and told me he felt like God wanted us to pray for everything to be fine. He specifically said he was going to pray for good lab results. I said thank you and went on my way.
Jump to Monday afternoon. I cry all the way to Columbia Surgical Associates to go pick up my calcitonin and CEA levels (CEA is another tumor marker for medullary). They are low NORMAL?!? Yeah, no kidding, wow. I thought this was indicative of a medullary tumor that had not spread (because of the low calcitonin levels - now you see why I wrote the science lesson) and considered it good news.
Jump to Wednesday. Now I'm at specialist's office at Wash U. This guy is a world renowned expert on medullary carcinoma. He walks in, takes a look at my calcitonin levels and says he doesn't think I have medullary carcinoma. He has only had one pt that didn't spike a calcitonin level, but he still didn't think it was as low as mine. Upon talking to him again he had another pt that eventually stopped producing calcitonin with advanced disease. Um, I'm really not going there, just because. He said it was reported to have normal calcitonin levels, but exceedingly rare, because usually calcitonin is the tumor marker. So if I do end up having medullary carcinoma it will make monitoring its progress a problem. Unfortunately the slides from Boone were still lost in transit on Wed so they took another aspiration from Bob (my affectionate name for the tumor - no offense to Bobs of the world). He says he would be shocked if I had medullary carcinoma and I leave cautiously optimistic.
Ok today. So I get a call from Mr. World Renowned that says his pathologists think that it is papillary, but see why my pathologists thought it was medullary so we can't rule out medullary. We are going to do surgery to remove Bob and the remainder of my thyroid and possibly some lymph nodes and hopefully get a diagnosis. Unfortunately at this point that surgery is scheduled for Nov 15!! He said he was going to try to get things done earlier, but it looks like we all have some more time to pray. For papillary.
I had my calcitonin levels redrawn today (my idea) so if you want to pray that they stay down that would be fantastic. Perplexing, but good. I did stop by the pathologists office today (the nice thing about being an OR nurse is dropping off specimens often enough that I know who they are) and ask some questions about fine needle aspirations. Apparently mine did have some characteristics of papillary carcinoma, but had the cells that were typical of medullary carcinoma. One pathologist volunteered that there was a rare adenoma (benign tumor) that looked like medullary, but wouldn't raise calcitonin levels. I wouldn't mind an adenoma either.
Today the Wash U guy said he still thought it would be 1 in 1000 that I had medullary carcinoma. On Monday I thought for sure it was medullary so I guess, yes, some major praying has been happening. If you have made it to the end of this entry - I'm sorry it was long and scientific. Thanks for your prayers. You guys rock and I love you.
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7 comments:
whoa!!! praise God, seriously! this is awesome news. keep us updated with the second round of calciton tests, or whatever it is. yaaaay!
I don't mind science lessons if they are told in simple terms like you just did. I'm not much of a science person, but I want to know more than yes or no too.
"Bob" is the best you could do nickname-wise? With Coke Can and all the other affectionate name you have come up with I'm surprised at the simplicity of this one. LOL!
I loved the science lesson! If only you could explain all of these kinds of things to me!
These results, although conflicting, sound like super news to me!
You are so not a wimp. Quite the opposite. And I'm very glad that House isn't your doc.
Just got back from Little Rock with Ben...so I am just reading this entry. GOD IS GOOD! We are still praying for you, for more fantastic news from you and your "earthly physicians", and even greater answers from the GREAT PHYSICIAN.
You are a special lady!
This has been a long 2 1/2 weeks for all of us, but I know they have been especially long for you. We are all in this for the long haul with you, which will hopefuly lead to good news in the end. Thanks for calling and leaving me a message on my cell while I was at work. It is nice to get some semi good news when it is all you think about during the day. Thinking about other things makes teaching very difficult. Still praying and trying to keep spirits up.
Love ya,
Em
i agree, your science lessons are great!
i'm glad you have a really great support group.
you're sincerely in my prayers. keep kicking Bob's butt!
ps. btw, MEN can be both a syndrome and a gender at the same time. :D har har.
Yippee for cool shows of God's love. I am so excited for you. I will say you will have great bedside manner if you keep up the good work with explanations. If you forget, I will remind you of course. What are friends for, afterall?
Keep the chin up, and keep kickin' yourself in the Bob.
lots of love to you!
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