I have started a new blog for a new chapter of my life:
http://owhatwasithinking.spaces.live.com
Wednesday, June 25, 2008
Monday, October 29, 2007
Drumroll please...
The pathology report is finally back!!!!!! I had papillary carcinoma (yipee - it is one of the most curable cancers) and the lymph nodes were negative!!! That is good news. I will of course request a path report when I'm at Barnes next week to read exactly what they found, but it is some kind of papillary carcinoma and that concentrates iodine. So if I take radioactive iodine that should kill any remaining cells. I have an appt with a radiation oncologist on Nov 9 and will get the iodine that day. I have to stay at least arm's length away from people for 48 hours afterwards. Then I will have a body scan on to see if there is any remaining thyroid tissue or if there are any mets. Mets should be unlikely with negative nodes. The most important good news is that I get to take thyroid hormone on Nov 10!!! WWWWoooo HOOOOO And now I definitely have to finish my secondary applications!
Monday, October 22, 2007
Surgery is Over!!!!
Surgery wasn't too bad. I arrived at 5am Thursday morning with 5 circles on my neck. 2 of the circles were lymph nodes that looked really suspicious and the other 3 were nodes that looked regular suspicious?? I was a little confused by the distinction, actually the entire ultrasound was not too clear, but a tech, fellow and finally an attending all scanned my neck from under my jaw to above each clavicle and they thoroughly checked all the nodes/glands for over an hour.
Anyway the surgery took around 3 hours and they removed my entire thyroid, several nodes and transplanted my right parathyroids (for this I'm taking 3000mg of calcium of day). I will not get the pathology report on Bob until Wed or Thurs :( The surgeon said the surgery went well and he was optimistic. I'm thankful that I never felt nauseous and the pain is limited to a bizarre pressure on my neck, like someone is trying to choke me. The pain medicine helps with that. I will have a 3 - 4 inch scar on the base of my neck and a tiny scar below that where the drain was. I guess the big question is what exactly Bob is. I'm going to hit the sack now though because I'm tired and it actually hurts to yawn.
Anyway the surgery took around 3 hours and they removed my entire thyroid, several nodes and transplanted my right parathyroids (for this I'm taking 3000mg of calcium of day). I will not get the pathology report on Bob until Wed or Thurs :( The surgeon said the surgery went well and he was optimistic. I'm thankful that I never felt nauseous and the pain is limited to a bizarre pressure on my neck, like someone is trying to choke me. The pain medicine helps with that. I will have a 3 - 4 inch scar on the base of my neck and a tiny scar below that where the drain was. I guess the big question is what exactly Bob is. I'm going to hit the sack now though because I'm tired and it actually hurts to yawn.
Monday, October 15, 2007
D-Day Approaches
Okay so the good news (I think) is that my new calcitonin levels and CEA levels came back normal. The really good news...my sister's calcitonin levels came back normal!!! It is freaky to have cancer all by itself, but when you are worried that your sister might have it too...that made me neurotic more than a few times.
I'm not sure how D-Day is going to treat my heart. On my walk to Columbia Surgical to pick up the new labs I was tearing up and my heart was racing. I was thinking that it might be necessary to stop by the cardiologist's office on the way but I made it and breathed sigh a relief when I saw the same numbers again. Not even close to the sigh of relief that I will breathe when this is over.
I'm leaving for StL on Wednesday morning. I have an 11 am appt for blood tests and a pregnancy test. Now if that comes back positive God has really been up to something. What I am not looking forward to is the 2:30 ultrasound to see if/how many lymph nodes are involved. Seriously I don't want to know. I've noticed Bob the Blob on old pictures and that concerns me. How long has he been around? Where has he gone? What is going on with his cells? I think they should do it while I'm asleep right before surgery - that way I get all the news at once. I almost had a heart attack on the way to pick up the lab results. I'm not sure how I'm going to make it through the ultrasound. Surely they have defibrillators around.
Thursday we have to leave the house by 4 am to be at Barnes by 6 am. Surgery is scheduled for 8am. I'm supposed to be able to leave on Friday. Hopefully there will be answers by then. I'm thinking of having a little movie party for myself Wednesday night because I'm sure I wouldn't be able to sleep, no matter what drug I take.
Several people have asked me what colors to wear. My hospital attire includes MU pants, a gold MU sweatshirt and black and gold socks. I'm bringing my camera. Hopefully when I have more time on my hands, before all my thyroid hormone is gone, I'll figure out how to post pics on this blog.
Love ya'll!
I'm not sure how D-Day is going to treat my heart. On my walk to Columbia Surgical to pick up the new labs I was tearing up and my heart was racing. I was thinking that it might be necessary to stop by the cardiologist's office on the way but I made it and breathed sigh a relief when I saw the same numbers again. Not even close to the sigh of relief that I will breathe when this is over.
I'm leaving for StL on Wednesday morning. I have an 11 am appt for blood tests and a pregnancy test. Now if that comes back positive God has really been up to something. What I am not looking forward to is the 2:30 ultrasound to see if/how many lymph nodes are involved. Seriously I don't want to know. I've noticed Bob the Blob on old pictures and that concerns me. How long has he been around? Where has he gone? What is going on with his cells? I think they should do it while I'm asleep right before surgery - that way I get all the news at once. I almost had a heart attack on the way to pick up the lab results. I'm not sure how I'm going to make it through the ultrasound. Surely they have defibrillators around.
Thursday we have to leave the house by 4 am to be at Barnes by 6 am. Surgery is scheduled for 8am. I'm supposed to be able to leave on Friday. Hopefully there will be answers by then. I'm thinking of having a little movie party for myself Wednesday night because I'm sure I wouldn't be able to sleep, no matter what drug I take.
Several people have asked me what colors to wear. My hospital attire includes MU pants, a gold MU sweatshirt and black and gold socks. I'm bringing my camera. Hopefully when I have more time on my hands, before all my thyroid hormone is gone, I'll figure out how to post pics on this blog.
Love ya'll!
Monday, October 8, 2007
The Funeral is Scheduled!!!!
Okay so I posted something about planning a funeral for Bob the Blob on Facebook and got a concerned message from a friend. Thankfully this is one funeral that I am not sad about at all. Remember the music minister from my last post? Well I was thanking him for praying that all the labs came back normal and telling him that there is still some uncertainty about the diagnosis that will only be answered by surgery. He said the next specific thing that he was going to pray for was an earlier surgery date (the first one was Nov 15). At this point I shouldn't be surprised that I got a phone call this morning from my surgeon's secretary saying a case canceled on Oct 18 and would I like to have surgery first thing next Thurs? Of course! To be honest I'm terrified, but the only way I will ever get to find out how worried I should be about Bob is by removing him...hopefully permanently.
Hmm...this experience has really made me think about the power of prayer.
Hmm...this experience has really made me think about the power of prayer.
Wednesday, October 3, 2007
A Miracle and An Episode of House?
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.
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.
Thursday, September 20, 2007
It has been a roller coster...
Okay, here goes...so the day before I got my MCAT results (34 - woohoo!!) someone in the OR noticed that there was a bump on my thyroid. Yesterday I found out that the bump is medullary thyroid cancer. I didn't know that our family had a history of any thyroid problems so this came as a real shock to everyone involved. Medullary thyroid cancers are most often hereditary and are very rare (hence the name of the blog). Yeah, I always like to beat the odds...and I'm going to continue to do so. On with the story - my aunt told me today that a couple of my grandmother's young cousins died of a "neck tumor" so it seems possible that we have the "special" gene. Thankfully that happened 40 years ago and medicine has come a long way.
Because this tumor is rare and associated with a syndrome called multiple endocrine neoplasm whatever I am going to see a specialist at Barnes. My first appointment with the specialist is Oct 3rd. I will have to have my thyroid removed and the lymph nodes in my neck evaluated. I don't really like the idea of being on that end of the knife, but I'm really tired of the tumor. I don't know much about MEN (the syndrome or the gender) because I don't think any syndrome with multiple and neoplasm in the name sounds like fun. Actually I'm intentionally not looking it up because I'm not going to scare the crap out of myself over something that I don't even know that I have. The only reading I'm doing is about spine surgery. For now I'm going to let the doctor be the doctor so I can do things like eat and sleep. This was the advice of some very courageous cancer survivors that I work with and damnet I am going to make it just like them...I've got plans you know. I do know that some people live with it for years. They have kids. They have lives. I'm focused on that.
I've been told this is treatable. Not as friendly as a teddy-bear-like papillary carcinoma, but fightable and fight I will do. It is weird. At the beginning of the day yesterday I was scared I had cancer and by the end I just wanted the normal one. I guess I just need someone to tell me I have a GBM or pancreatic cancer or an anaplastic tumor to put this in perspective. Thankfully I don't have those.
I wanted use this blog as an easy way to disperse information about what is going on. Feel free to ask me questions. Understand that at this point I'm intentionally not learning loads of new information so I may have no idea and not really want to find out.
I love you guys! Thanks so much for all the support.
Because this tumor is rare and associated with a syndrome called multiple endocrine neoplasm whatever I am going to see a specialist at Barnes. My first appointment with the specialist is Oct 3rd. I will have to have my thyroid removed and the lymph nodes in my neck evaluated. I don't really like the idea of being on that end of the knife, but I'm really tired of the tumor. I don't know much about MEN (the syndrome or the gender) because I don't think any syndrome with multiple and neoplasm in the name sounds like fun. Actually I'm intentionally not looking it up because I'm not going to scare the crap out of myself over something that I don't even know that I have. The only reading I'm doing is about spine surgery. For now I'm going to let the doctor be the doctor so I can do things like eat and sleep. This was the advice of some very courageous cancer survivors that I work with and damnet I am going to make it just like them...I've got plans you know. I do know that some people live with it for years. They have kids. They have lives. I'm focused on that.
I've been told this is treatable. Not as friendly as a teddy-bear-like papillary carcinoma, but fightable and fight I will do. It is weird. At the beginning of the day yesterday I was scared I had cancer and by the end I just wanted the normal one. I guess I just need someone to tell me I have a GBM or pancreatic cancer or an anaplastic tumor to put this in perspective. Thankfully I don't have those.
I wanted use this blog as an easy way to disperse information about what is going on. Feel free to ask me questions. Understand that at this point I'm intentionally not learning loads of new information so I may have no idea and not really want to find out.
I love you guys! Thanks so much for all the support.
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