I was asked on short notice to make a rare business trip to Indianapolis so I arrived in my never worn wool coat to the first snow of the year. So messy traffic and white lint all over my black pants. A delightful day all around! But the people here are so wonderful that it truly has been a wonderful trip.
I rescheduled my allergist appointment for the 17th. I told them of my fairly dire circumstances and they were able to get me in before the new year. For that I'm grateful.
In the meantime, I'm trying to do a good job of hiding this allergy from my coworkers and employer while away from my own kitchen. It's an interesting day when you can look back at the last few weeks and realize your eating habits are completely bizarre. I know if I'd read about anybody else eating bananas, brown rice, and meat that I'd call them a looney tune or that I'd consider them in the eating disorder realm. But when it's you, well, it's different. It's amazing that you can develop coping mechanisms for just about anything if it keeps you feeling well.
Fortunately, my boss told me before I left that I should eat like when I'm at home. Ok. I eat meat. And meat at a restaurant is expensive. But I found a place about a 1/2 mile walk down the way where I go every evening for dinner. I get free bananas at the hotel, lunch at Lilly's cafeteria is inexpensive and healthy, and then I get a real dinner. I'm feeling a bit peaked after tonight's steak, though. I need some carbs besides a banana, so I might need to go get a bowl of plain white rice at the asian place nearby and try to see if I can eat it with my steak since they know me at the bar by now. And by bar, I mean very nice restaurant, and by bar, I mean I am not eating in the restaurant by myself. And the wine is good.
The lunch will be my biggest challenge. I had sushi today and my stomach has been upset and my face puffy. I'll have to see if I can find plain rice or meat tomorrow. I can't stomach eating bananas all day and then just meat at night. And no diet coke tomorrow. I caved and had murmurs of chest something within the hour. We'll see how tomorrow goes.
Monday, December 7, 2009
Tuesday, December 1, 2009
Finally some answers, even if I had to figure it out myself
December 1, 2009
I've read through my old posts and can't believe how sick I was this summer and fall. I've had so many questions about how I'm doing now so thought I'd update the blog.
I kept putting off writing because every time I turned around I was waiting for another appointment or answer or had another question. I just wanted to put the final answer on the update. Well, see where that got me? Three months later. But possibly with some real answers so here goes.
About 6 or 7 weeks ago I had some odd reactions to food. I've been mildly allergic to eggs (shown by blood test and evidenced by facial swelling and feeling really bad when I eat them) and various forms of corn (evidenced by blisters while eating or under my skin on my fingers or dead skin in my mouth or being in severe abdominal pain when consuming the corn syrup variety). Sorry about the graphics, but had to explain as I get this question constantly. Folks think that because you don't go into shock and your throat doesn't close that you aren't allergic. Not true.
So 6 or 7 weeks ago I ate some pasta salad with mayo (it should be it's own food group) and my tongue swelled up and filled my mouth pretty well. Under my eyes swelled up and were very black. Not my normal mayo eating self for sure. Hmmm, I thought. Mayo has eggs in it, but I've never had this reaction.
The next weekend I ate Smithfield fried chicken and a ton of their fries. I worked outside landscaping all day and I deserved all of its greasy goodness. But I didn't deserve the mass of blisters behind each ear. Well, I thought. Not sure what was in the crunch coating on the chicken or the fries. And I was excessively exhausted all week. Power for the course. Felt normal.
Then I ate drank 1 1/2 cosmopolitan drinks and a small bite of a smore the following Saturday. I was still sick on Monday. Oh good God, I thought. Corn syrup in some of the drink flavoring (not much) and corn and such in the smore. All 1/8 of a bite of it...
I had HAD it. Every time I turned around I would go from ok to exhausted, swollen face, baggy and black eyes, raw tongue, hard to breathe, heart would race, chest would hurt, and I generally felt like crap. Or shit. Depended on the day.
So after some research, I decided to go on the good old pet formula diet...lamb and rice. Go down to the bare bones food that is known to be minimally bothersome to most people, and then add foods from there. So for the first few days I felt like a dog, but mostly because I felt sick from the drinks and smore. Then the clouds started to part.
I kept a journal of how I felt each day and what I ate, down to the kosher salt I put on my dinner. And I ate a lot of salt. When you are suspicious of everything on your plate, salt becomes a very important spice so food isn't so bland.
And I started to feel better. And better. And well. As in healthy. But the end of that first week I actually wanted to go running. I worked at landscaping for an entire day of hard physical labor and felt fine the next day. This could be something, I thought.
The following Wednesday, 16 days after starting the Alpo routine (with bananas), I about had a sugar fit mid-afternoon. I broke down and put a small blob of honey on my tongue. By evening my tongue was raw and the edge was covered in hard lumps and my tongue filled my mouth. I felt like I was going to have an asthma attack at any moment...it was hard to breath like I wasn't getting enough air...but I wasn't wheezing. I went up the stairs and I about collapsed from sheer exhaustion. And my face puffed up. I had a flashback to how I felt right before I went to the hospital. Odd, I thought. It really couldn't be THIS simple.
The following weekend we went to a movie and I broke down and had my first diet coke in a couple of weeks. Ahhhh, canned crack. Delightful! Then really NOT. I started having sharp chest pains half way through my big cup of carbonated delight and wasn't so delighted anymore. Are you friggin' kidding me, I thought...almost out loud in a yelling sort of voice.
A few days later I had 2 glasses of red wine, a big deal for Ms. Lightweight. Yummy! Then I went upstairs to go to bed. And had to rest with my head on the bathroom counter panting for air like I'd sprinted up the block. Those stairs took all my air and my heart started to race. And laying there in bed I put all the pieces together. Chest pain-check. Shortness of breath-check. Going up the stairs causing odd and extreme exhaustion-check. Asthma attack with no wheezing-check. Facial swelling-check. Racing heart-check. Food-oh no.
So now that I've been on this very careful diet for a while, I've weened off all my medication. I no longer take heart medication or steroids. My hair has stopped falling out. And I feel brilliantly good when I eat well for several days in a row. I have had some of the best workouts in well over a year. And going up the stairs doesn't make me feel odd.
I do have to be exceptionally careful with what I eat. I'm hoping that my appt. with an allergist on the 8th will help me formalize an approach for finding other food to eat. So far it's brown rice, any kind of meat or fish (not shellfish yet as scallops made me sick), and bananas. and avocados and olive oil. I work on other veggies and fruit, but most make my tongue raw and cause some facial swelling among other things. I'm hoping that as things calm down that the reactions to many things will die down. I was careful over the holidays, but opened up a bit and had fun eating some other things and have felt extremely run down and exhausted for a few days. I've eaten clean for 2 days and am starting to pick right back up again and am feeling good.
The good part is that I think I've found the answer and have made it come and go. A scientist's dream. But this is possibly a foodie's worst nightmare. My husband and I have very briefly discussed that we'll talk about my possible limitations after I see the allergist and after we are really certain what's going to happen.
On a side note, if I am still healthy in January and my food experiment is going well, Dr. Ley has decided he will take out 1/2 my thyroid where the nodule is. He still has more questions than answers about it and with the calcification and blood supply, it doesn't make him feel any better. At least it hasn't grown. He's just glad I'm feeling so well and doesn't want to introduce any new huge variable until I've stabilized for a few months. He'll also get me in to see his dietician when things stabilize as well, to make sure I'm not going to end up sick if I have to eat a limited diet.
I'll post more after my appointment on the 8th. Thank you for all your well wishes and prayers. They obviously worked :)
I've read through my old posts and can't believe how sick I was this summer and fall. I've had so many questions about how I'm doing now so thought I'd update the blog.
I kept putting off writing because every time I turned around I was waiting for another appointment or answer or had another question. I just wanted to put the final answer on the update. Well, see where that got me? Three months later. But possibly with some real answers so here goes.
About 6 or 7 weeks ago I had some odd reactions to food. I've been mildly allergic to eggs (shown by blood test and evidenced by facial swelling and feeling really bad when I eat them) and various forms of corn (evidenced by blisters while eating or under my skin on my fingers or dead skin in my mouth or being in severe abdominal pain when consuming the corn syrup variety). Sorry about the graphics, but had to explain as I get this question constantly. Folks think that because you don't go into shock and your throat doesn't close that you aren't allergic. Not true.
So 6 or 7 weeks ago I ate some pasta salad with mayo (it should be it's own food group) and my tongue swelled up and filled my mouth pretty well. Under my eyes swelled up and were very black. Not my normal mayo eating self for sure. Hmmm, I thought. Mayo has eggs in it, but I've never had this reaction.
The next weekend I ate Smithfield fried chicken and a ton of their fries. I worked outside landscaping all day and I deserved all of its greasy goodness. But I didn't deserve the mass of blisters behind each ear. Well, I thought. Not sure what was in the crunch coating on the chicken or the fries. And I was excessively exhausted all week. Power for the course. Felt normal.
Then I ate drank 1 1/2 cosmopolitan drinks and a small bite of a smore the following Saturday. I was still sick on Monday. Oh good God, I thought. Corn syrup in some of the drink flavoring (not much) and corn and such in the smore. All 1/8 of a bite of it...
I had HAD it. Every time I turned around I would go from ok to exhausted, swollen face, baggy and black eyes, raw tongue, hard to breathe, heart would race, chest would hurt, and I generally felt like crap. Or shit. Depended on the day.
So after some research, I decided to go on the good old pet formula diet...lamb and rice. Go down to the bare bones food that is known to be minimally bothersome to most people, and then add foods from there. So for the first few days I felt like a dog, but mostly because I felt sick from the drinks and smore. Then the clouds started to part.
I kept a journal of how I felt each day and what I ate, down to the kosher salt I put on my dinner. And I ate a lot of salt. When you are suspicious of everything on your plate, salt becomes a very important spice so food isn't so bland.
And I started to feel better. And better. And well. As in healthy. But the end of that first week I actually wanted to go running. I worked at landscaping for an entire day of hard physical labor and felt fine the next day. This could be something, I thought.
The following Wednesday, 16 days after starting the Alpo routine (with bananas), I about had a sugar fit mid-afternoon. I broke down and put a small blob of honey on my tongue. By evening my tongue was raw and the edge was covered in hard lumps and my tongue filled my mouth. I felt like I was going to have an asthma attack at any moment...it was hard to breath like I wasn't getting enough air...but I wasn't wheezing. I went up the stairs and I about collapsed from sheer exhaustion. And my face puffed up. I had a flashback to how I felt right before I went to the hospital. Odd, I thought. It really couldn't be THIS simple.
The following weekend we went to a movie and I broke down and had my first diet coke in a couple of weeks. Ahhhh, canned crack. Delightful! Then really NOT. I started having sharp chest pains half way through my big cup of carbonated delight and wasn't so delighted anymore. Are you friggin' kidding me, I thought...almost out loud in a yelling sort of voice.
A few days later I had 2 glasses of red wine, a big deal for Ms. Lightweight. Yummy! Then I went upstairs to go to bed. And had to rest with my head on the bathroom counter panting for air like I'd sprinted up the block. Those stairs took all my air and my heart started to race. And laying there in bed I put all the pieces together. Chest pain-check. Shortness of breath-check. Going up the stairs causing odd and extreme exhaustion-check. Asthma attack with no wheezing-check. Facial swelling-check. Racing heart-check. Food-oh no.
So now that I've been on this very careful diet for a while, I've weened off all my medication. I no longer take heart medication or steroids. My hair has stopped falling out. And I feel brilliantly good when I eat well for several days in a row. I have had some of the best workouts in well over a year. And going up the stairs doesn't make me feel odd.
I do have to be exceptionally careful with what I eat. I'm hoping that my appt. with an allergist on the 8th will help me formalize an approach for finding other food to eat. So far it's brown rice, any kind of meat or fish (not shellfish yet as scallops made me sick), and bananas. and avocados and olive oil. I work on other veggies and fruit, but most make my tongue raw and cause some facial swelling among other things. I'm hoping that as things calm down that the reactions to many things will die down. I was careful over the holidays, but opened up a bit and had fun eating some other things and have felt extremely run down and exhausted for a few days. I've eaten clean for 2 days and am starting to pick right back up again and am feeling good.
The good part is that I think I've found the answer and have made it come and go. A scientist's dream. But this is possibly a foodie's worst nightmare. My husband and I have very briefly discussed that we'll talk about my possible limitations after I see the allergist and after we are really certain what's going to happen.
On a side note, if I am still healthy in January and my food experiment is going well, Dr. Ley has decided he will take out 1/2 my thyroid where the nodule is. He still has more questions than answers about it and with the calcification and blood supply, it doesn't make him feel any better. At least it hasn't grown. He's just glad I'm feeling so well and doesn't want to introduce any new huge variable until I've stabilized for a few months. He'll also get me in to see his dietician when things stabilize as well, to make sure I'm not going to end up sick if I have to eat a limited diet.
I'll post more after my appointment on the 8th. Thank you for all your well wishes and prayers. They obviously worked :)
Monday, September 21, 2009
Appointment cancelled
Dr. Ley's office called this morning. They've decided to wait until I see the doctor at Duke University before going back in. This was nice as it saves me a $30 copay, but disappointing because I thought we might step forward with solving this mess. Oh, well.
I feel much better than I did then, and am now working...YAY!!! But have been feeling a bit off again and last night woke up in a full sweat in the middle of the night. I wish it was because I was hot and bothered, but that wasn't the case. Just a sheet soaker experience that made me feel gross. I also ached all weekend. All my joints, especially my knees, and some muscle aches, too. Enough I say, but all in good time.
Well, here's to crossing my fingers to good results on Oct. 5th at Duke.
I feel much better than I did then, and am now working...YAY!!! But have been feeling a bit off again and last night woke up in a full sweat in the middle of the night. I wish it was because I was hot and bothered, but that wasn't the case. Just a sheet soaker experience that made me feel gross. I also ached all weekend. All my joints, especially my knees, and some muscle aches, too. Enough I say, but all in good time.
Well, here's to crossing my fingers to good results on Oct. 5th at Duke.
Thursday, September 3, 2009
Outstanding News
I just received a call from my endo doc's nurse and she said all my blood tests came back normal. Never has there been such a sweet word as normal. She said that my calcitonin level is now back within the normal range, the first time it's been tested that way. Music to my ears and I think it made her weekend when I told her it made mine.
Big question of the day...With such a small nodule to begin with (0.2"), if it was cancerous, could the biopsy (four samples from that one nodule) have removed enough of the tissue to make a difference with the calcitonin level?
In any regard, it's nice to see the level go down, have my potassium back in normal range, and have my aldolase go back down. I may even go jog tomorrow :)
Big question of the day...With such a small nodule to begin with (0.2"), if it was cancerous, could the biopsy (four samples from that one nodule) have removed enough of the tissue to make a difference with the calcitonin level?
In any regard, it's nice to see the level go down, have my potassium back in normal range, and have my aldolase go back down. I may even go jog tomorrow :)
Tuesday, September 1, 2009
Surprise call from the Doc
It turned out to be my endocrinology doc wanted to know if the Duke doc had called me yet. Huh?
Turned out he had an entire packet of my health history all together and had placed a call to the last stop doc they all turn to at Duke. Their office was to call me to make an appointment to go see him. Uh, I don't remember discussing this with him, actually I am sure we didn't, but am so glad he went ahead and did. I've been waiting for my file to go to that one person who will have an aHA moment when they see what's going on. Or at least go aHA, I know what other tests to run.
I also asked him if we were going to discuss my thyroid removal when I go back in 3 weeks. He said that he wants to see what the Duke doc says, but will probably recommend we take out the half of the thyroid with the suspicous nodule and go from there. If the pathology report comes back negative, I'll still have half my thyroid. If it comes back papillary cancer, we did the right thing and I'll have half my thyroid, and if it comes back medullary, we'll probably go back and remove the entire thing plus some nodules, etc. At this point I don't want to deal with another biopsy since the nodule is so small and didn't release enough material the first time. I would rather err on the side of caution, with half my thyroid intact. Besides, it will also help us figure out if my slightly elevated calcitonin levels was just because my baseline is higher than the normal population or if there was reason for concern. I read somewhere that medullary thyroid cancer can (can, not that it will) metastesize as early as a calcitonin level of 10, and mine is still less than that.
I guess my next question will be, if this nodule is benign or not, could it be the reason everything is just wacky? The doc stated at the start that it could be all or nothing. He said that it was possible that with the vascular nature of the nodule that it could be throwing off lots of weird signals to my body, or that it may not be causing any of them and we luckily found it by chance.
I started my 2.5 mg of prednisone this morning. I don't know if it's affecting anything because I'm so hyped up over the possibility of getting to work from home. I'm sure it will take a few days.
On another note, it is actually cool today so I'm going to go for a real walk later, not just a saunter round the block. And will do my weinie weights first. Wish me luck!
Turned out he had an entire packet of my health history all together and had placed a call to the last stop doc they all turn to at Duke. Their office was to call me to make an appointment to go see him. Uh, I don't remember discussing this with him, actually I am sure we didn't, but am so glad he went ahead and did. I've been waiting for my file to go to that one person who will have an aHA moment when they see what's going on. Or at least go aHA, I know what other tests to run.
I also asked him if we were going to discuss my thyroid removal when I go back in 3 weeks. He said that he wants to see what the Duke doc says, but will probably recommend we take out the half of the thyroid with the suspicous nodule and go from there. If the pathology report comes back negative, I'll still have half my thyroid. If it comes back papillary cancer, we did the right thing and I'll have half my thyroid, and if it comes back medullary, we'll probably go back and remove the entire thing plus some nodules, etc. At this point I don't want to deal with another biopsy since the nodule is so small and didn't release enough material the first time. I would rather err on the side of caution, with half my thyroid intact. Besides, it will also help us figure out if my slightly elevated calcitonin levels was just because my baseline is higher than the normal population or if there was reason for concern. I read somewhere that medullary thyroid cancer can (can, not that it will) metastesize as early as a calcitonin level of 10, and mine is still less than that.
I guess my next question will be, if this nodule is benign or not, could it be the reason everything is just wacky? The doc stated at the start that it could be all or nothing. He said that it was possible that with the vascular nature of the nodule that it could be throwing off lots of weird signals to my body, or that it may not be causing any of them and we luckily found it by chance.
I started my 2.5 mg of prednisone this morning. I don't know if it's affecting anything because I'm so hyped up over the possibility of getting to work from home. I'm sure it will take a few days.
On another note, it is actually cool today so I'm going to go for a real walk later, not just a saunter round the block. And will do my weinie weights first. Wish me luck!
Monday, August 31, 2009
More of the Same
I was hoping, but not counting on, some new news today. But nothing really new. Dr. Ley wanted to see how I felt, that's pretty much it. I thought he was going to be talking to the doctors at Duke, but he was just watching my progress since I'm not stable. I was thinking that that would be an excellent reason to talk to Duke, but I guess NOT. Grumble.
Because the cortisol test seemed to help so much, he had me on 7.5 mg of prednisone a day. He backed me off to 5 several weeks ago. I really started feeling more tired and backsliding with other symptoms starting the middle of last week. So he is thinking the prednisone isn't helping and wants me to wean down to 2.5 mg starting tomorrow, and 0 in a week. Any bets that I'll feel like the compost pile by this time next week? My bet is that the lowered prednisone caught up with me and that's why I'm feeling worse. But since he is tinkering, he wants me to keep him updated when I feel a change. My bet is that I'll call Thursday night or Friday morning, but only God knows right now.
I will say that I'm impressed that he has called to and talked each of my other docs, including my cardiologist. I had 3 very different heart function results and he wanted clarification. I REALLY appreciate that he is taking the time to go over every detail and note and is talking to the other specialists to truly find what is going on. It gives me faith that he is the right person, not just the right doctor, but the right person to entrust him with my health right now.
On another note, he does want to revisit taking out either my thyroid nodule or the entire thyroid at my next visit in three weeks. While the bibopsy didn't show the worst cancer, it did show suspect material and he said the vascular nature of it and the calcification in it was troublesome and we shouldn't wait much longer to make a decision on what to do. I was like 'take it NOW'. He stressed he sees it as a separate issue and wants to wait three weeks and I said 'I don't CARE'. I think I entertain him...and we will discuss further in three weeks.
I still say that part of my crap sandwich feeling is from my thyroid. Don't ask me how I know, I've just felt it for years that something was off and that it involves my thyroid. Now that there is the majority liklihood that it will be cancerous at some point, I'm just not in the mood to sit and whittle away and twiddle my thumbs. I'm action oriented and sitting and discussing isn't something I need to do anymore...I'm ready. I weighed all the facts as I acquired them and did so much research that as I received more facts, I knew where to sort them into my brain. The fact that my doc is very highly regarded and says that the nodule is cause for concern, when my research shows the vascularization and calcification and calcitonin levels back that up, well, I'm ready. Pop the mask on my face and lets roll with it. I guess I have such a health history of getting the unlikely news, of being the 1 in 100, and that sort of thing makes me more inclined to just deal with something now instead of sitting and waiting.
There was an additional blood letting at the end of the visit, but I didn't really cringe. Guess it's been long enough my veins and arms didn't automatically hide. He is retesting the calcitonin, aldolase, cpk, and running the standard metabolic panel. He checking to see if the calcitonin is still above normal or is going up or staying the same. He is running the aldolase because it was normal at the hospital and elevated several weeks later. He is running the cpk to make sure if the aldolase is elevated that it isn't my heart, and the panel because my potassium has been going up and down and around and around. Fingers crossed that all will be normal.
Fingers crossed and prayers that the prednisone reduction doesn't cause me to because really weak or that if it does that it provides the doc with some answers. And fingers crossed that the Duke doc can help provide clarity.
Because the cortisol test seemed to help so much, he had me on 7.5 mg of prednisone a day. He backed me off to 5 several weeks ago. I really started feeling more tired and backsliding with other symptoms starting the middle of last week. So he is thinking the prednisone isn't helping and wants me to wean down to 2.5 mg starting tomorrow, and 0 in a week. Any bets that I'll feel like the compost pile by this time next week? My bet is that the lowered prednisone caught up with me and that's why I'm feeling worse. But since he is tinkering, he wants me to keep him updated when I feel a change. My bet is that I'll call Thursday night or Friday morning, but only God knows right now.
I will say that I'm impressed that he has called to and talked each of my other docs, including my cardiologist. I had 3 very different heart function results and he wanted clarification. I REALLY appreciate that he is taking the time to go over every detail and note and is talking to the other specialists to truly find what is going on. It gives me faith that he is the right person, not just the right doctor, but the right person to entrust him with my health right now.
On another note, he does want to revisit taking out either my thyroid nodule or the entire thyroid at my next visit in three weeks. While the bibopsy didn't show the worst cancer, it did show suspect material and he said the vascular nature of it and the calcification in it was troublesome and we shouldn't wait much longer to make a decision on what to do. I was like 'take it NOW'. He stressed he sees it as a separate issue and wants to wait three weeks and I said 'I don't CARE'. I think I entertain him...and we will discuss further in three weeks.
I still say that part of my crap sandwich feeling is from my thyroid. Don't ask me how I know, I've just felt it for years that something was off and that it involves my thyroid. Now that there is the majority liklihood that it will be cancerous at some point, I'm just not in the mood to sit and whittle away and twiddle my thumbs. I'm action oriented and sitting and discussing isn't something I need to do anymore...I'm ready. I weighed all the facts as I acquired them and did so much research that as I received more facts, I knew where to sort them into my brain. The fact that my doc is very highly regarded and says that the nodule is cause for concern, when my research shows the vascularization and calcification and calcitonin levels back that up, well, I'm ready. Pop the mask on my face and lets roll with it. I guess I have such a health history of getting the unlikely news, of being the 1 in 100, and that sort of thing makes me more inclined to just deal with something now instead of sitting and waiting.
There was an additional blood letting at the end of the visit, but I didn't really cringe. Guess it's been long enough my veins and arms didn't automatically hide. He is retesting the calcitonin, aldolase, cpk, and running the standard metabolic panel. He checking to see if the calcitonin is still above normal or is going up or staying the same. He is running the aldolase because it was normal at the hospital and elevated several weeks later. He is running the cpk to make sure if the aldolase is elevated that it isn't my heart, and the panel because my potassium has been going up and down and around and around. Fingers crossed that all will be normal.
Fingers crossed and prayers that the prednisone reduction doesn't cause me to because really weak or that if it does that it provides the doc with some answers. And fingers crossed that the Duke doc can help provide clarity.
Friday, August 28, 2009
More answers Monday?
It's been a while since I've posted and many of you have asked for updates. I've been kind of trying to ignore this whole health issue away, hoping that a lack of attention will get rid of it, but it hasn't...of course.
My biopsy came back inconclusive due to not enough material. I was like WHAT?! Y'all poked me with 6 needles, came back with a 7th, and you STILL didn't get enough material??? The good news is that they had enough material to stain and test for the worst thyroid cancer, which can kill you within months, but I never thought I had that kind, so don't really understand why the pathologist tested for it first. It was my calcitonin that was high, which indicates possible medullary thyroid cancer, so I feel they should have tested for that FIRST...
The great and fantastic news is that we found out that my uncle did NOT have medullary thyroid cancer. I had so many questions when I thought he had it, as in why didn't they tell him to tell his daughter and brothers to get tested and why was he ok after so many years with such a large tumor to begin with. It just didn't add up. Thankfully, my doctor asked for a verification from my uncle's oncologist and when my uncle talked with their office, he found out that the first person who looked at the record didn't look at the actual pathology report. They looked at something else. So come to find out that he had papillary thyroid cancer, which is the type of cancer doctor's choose to have if they have to choose a type of cancer to have personally. So I've been told by several doctor's. So that makes me feel relieved for my uncle's sake. A little bit for me, but mostly for him.
The biopsy and Uncle's findings still don't answer why my calcitonin level is elevated. My doctor has been talking with Duke University about my test results, etc. I'm sure he has shared with them my bizarre reaction to the cortisol test (I personally want to take the test again because I had a magnificent amount of energy with no crash!) as well all the other fun stuff. He was also going to look at my latest aldolase level. In the hospital it tested normal, then at the neurologist's request, the office lab took it again (Remember Boris and the drug testing? I sure do.) This time it came back elevated. So my doc was going to call and compare the tests to see if it was really saying something or not as any change might tell him something. Aldolase can tell if there is muscle damage going on or a number of other things I don't really want to think about.
So as you can see, it's been over two weeks since my bibopsy and I'm still no more knowledgeable about anything. Well, I guess I now know the term 'aldolase' and what it means, but that's not what I was going for!
So over the past several weeks I've tried to ignore this pain in the a$$ crap fest. I've been working as much as I can around the house to unpack, organize, paint. Basically everything I couldn't do earlier this summer when we moved it. I do it in part because complete disorder drives me insane, and in part because I love to organize things and make things look great (which is good due to number one). However, a small part of me is concerned that this is going to come back with a vengeance and take revenge for all the activity I've been doing and I'll be unable to do anything again. It's started catching up to me, starting last weekend. I could feel myself slowing down a little bit. Then over the course of the week I had some pretty rough days with being awfully tired, down to the core, where all I want to do is give in and lay around in the sun like the cats. Although the sun was too hot. My skin would burn and feel so hot inside, but feel fine on the outside. And when I worked for a while, I would feel odd, and I could tell that if I went to look in the mirror, that my face would either be completely pale or that the skin around my nose would be oddly bloodless white. I'm a face flusher and I get red when I get warm, move around, exercise, or basically breathe. So to go that pale while feeling odd at the same time is disconcerning, especially with a heart problem. So ignore has been the name of the game. All is well, fa la la la la, tip toe through the tulips, and all that jazz. I am happy to report that part of it has worked as I have completed my 10 months of backed up filing, have redone the file cabinet, and our bonus room has been transformed from a toddler death trap to a pretty decent room. If I felt like it I could turn on an exercise video and not put my foot through a picture frame and wouldn't slip on a stack of recipes torn out of countless magazines. I mean, I DON'T feel like it, but I COULD. I'm sure the garbage men are happy as I've thrown out bags upon bags of useless papers and the container will be much lighter from here on out. I guess my next question should be, how in the world did so much stuff get into out house in the first place???
I'll put the doc's answers, or lack thereof, on here on Monday. Until then, I'm going to try to ignore it again all weekend...just in case it works this time.
My biopsy came back inconclusive due to not enough material. I was like WHAT?! Y'all poked me with 6 needles, came back with a 7th, and you STILL didn't get enough material??? The good news is that they had enough material to stain and test for the worst thyroid cancer, which can kill you within months, but I never thought I had that kind, so don't really understand why the pathologist tested for it first. It was my calcitonin that was high, which indicates possible medullary thyroid cancer, so I feel they should have tested for that FIRST...
The great and fantastic news is that we found out that my uncle did NOT have medullary thyroid cancer. I had so many questions when I thought he had it, as in why didn't they tell him to tell his daughter and brothers to get tested and why was he ok after so many years with such a large tumor to begin with. It just didn't add up. Thankfully, my doctor asked for a verification from my uncle's oncologist and when my uncle talked with their office, he found out that the first person who looked at the record didn't look at the actual pathology report. They looked at something else. So come to find out that he had papillary thyroid cancer, which is the type of cancer doctor's choose to have if they have to choose a type of cancer to have personally. So I've been told by several doctor's. So that makes me feel relieved for my uncle's sake. A little bit for me, but mostly for him.
The biopsy and Uncle's findings still don't answer why my calcitonin level is elevated. My doctor has been talking with Duke University about my test results, etc. I'm sure he has shared with them my bizarre reaction to the cortisol test (I personally want to take the test again because I had a magnificent amount of energy with no crash!) as well all the other fun stuff. He was also going to look at my latest aldolase level. In the hospital it tested normal, then at the neurologist's request, the office lab took it again (Remember Boris and the drug testing? I sure do.) This time it came back elevated. So my doc was going to call and compare the tests to see if it was really saying something or not as any change might tell him something. Aldolase can tell if there is muscle damage going on or a number of other things I don't really want to think about.
So as you can see, it's been over two weeks since my bibopsy and I'm still no more knowledgeable about anything. Well, I guess I now know the term 'aldolase' and what it means, but that's not what I was going for!
So over the past several weeks I've tried to ignore this pain in the a$$ crap fest. I've been working as much as I can around the house to unpack, organize, paint. Basically everything I couldn't do earlier this summer when we moved it. I do it in part because complete disorder drives me insane, and in part because I love to organize things and make things look great (which is good due to number one). However, a small part of me is concerned that this is going to come back with a vengeance and take revenge for all the activity I've been doing and I'll be unable to do anything again. It's started catching up to me, starting last weekend. I could feel myself slowing down a little bit. Then over the course of the week I had some pretty rough days with being awfully tired, down to the core, where all I want to do is give in and lay around in the sun like the cats. Although the sun was too hot. My skin would burn and feel so hot inside, but feel fine on the outside. And when I worked for a while, I would feel odd, and I could tell that if I went to look in the mirror, that my face would either be completely pale or that the skin around my nose would be oddly bloodless white. I'm a face flusher and I get red when I get warm, move around, exercise, or basically breathe. So to go that pale while feeling odd at the same time is disconcerning, especially with a heart problem. So ignore has been the name of the game. All is well, fa la la la la, tip toe through the tulips, and all that jazz. I am happy to report that part of it has worked as I have completed my 10 months of backed up filing, have redone the file cabinet, and our bonus room has been transformed from a toddler death trap to a pretty decent room. If I felt like it I could turn on an exercise video and not put my foot through a picture frame and wouldn't slip on a stack of recipes torn out of countless magazines. I mean, I DON'T feel like it, but I COULD. I'm sure the garbage men are happy as I've thrown out bags upon bags of useless papers and the container will be much lighter from here on out. I guess my next question should be, how in the world did so much stuff get into out house in the first place???
I'll put the doc's answers, or lack thereof, on here on Monday. Until then, I'm going to try to ignore it again all weekend...just in case it works this time.
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