Calls With Dr. Wells and Dr. Olsen
Yesterday I talked to Dr. Wells on the phone and he told me that after talking to Dr. Olsen he wants to make sure I have enough time to recover from the adrenal surgery before joining the study. That means that if we need to we will push back me joining the study by a week BUT I will definately be in this study. He said not to worry because he wants me in it. That helped alleviate so much tension and worry. I was so afraid it was going to be a repeat of NIH and I was going to be told sorry we don't want you if you can't do it NOW.
Dr. Wells is such a nice man and it just floors me that a doctor who is so accomplished, so sought after, and so respected would take such an interest in me. I hear he is like this to everyone though and that speaks volumes about him. I just wish the other doctors I've run across would learn a lesson from him.
Anyway- Dr Wells told me that he was going to call Dr Olsen (he is the surgeon who is going to do my surgery) and have him call me sometime soon. Within half an hour Dr. Olsen called me and started asking me questions so he could decide what route to take. He ended up telling me the best news I have heard yet.
He wants/hopes to do a Bilateral Laproscopic Adrenal Sparing Surgery on me. What this means is that they leave a part of the adrenal gland and remove everything around/inside it including the tumor. The inside of the gland is called the medulla and the outside is called the cortex. By doing this surgery they hope to make it so I NEVER have another pheo. By leaving part of the adrenal gland it means that I won't have to be on replacement hormones and worry about the things that come along with that. VERY good news. VERY VERY good. :) Of course, there is a chance that the pheos could still come back and I could end up having to have all of my adrenal glands taken out later on but to me this is a risk worth taking. Even if it just buys me a few more years of not having to be on replacements then I'm willing to take it. I think the fact that the laparoscopic surgery is so much easier to recover from than the open surgery Tampa wanted to do helps too. I don't think I would want to go through two open surgeries you know?
Dr. Olsen also said he wants to schedule me for an MIBG scan and an Octreotide scan. Looks like alot of fun doesn't it? Ugh. LOL. I will also meet with him and then most likely the next week I will have my surgery.
So hopefully this is the beginning and things will work out. On the dark side, I have finished my Living Will, and appointed Vin to make decisions for me pertaining to healthcare. Now I just need to finish my will and have it all go to a Notary Public to be notarized. I want to make sure everything is set and ready before any of this takes place. I've also already listed what is to be done with my remains as well and Vinny knows what I want done.
Tuesday, December 28, 2004
Sunday, December 26, 2004
What IS Men2a? Medullary Cancer? Pheochromocytomas? Hyperparathyroidism?
I figured that I would post some information about MEN2a and the things that come with it as well as links for anyone who is interested to read.
"Multiple Endocrine Neoplasia II (MEN II) is a hereditary disorder in which patients develop a type of thyroid cancer accompanied by recurring cancer of the adrenal glands. One type of this disease (MEN IIa) is also associated with overgrowth (hyperplasia) of the parathyroid gland. The cause of MEN II is genetic -- a mutation in a gene called RET. Multiple tumors may appear in the same person, but not necessarily at the same time. The adrenal tumor is a pheochromocytoma and the thyroid tumor is a medullary carcinoma of the thyroid. The disorder may occur at any age, and affects men and women equally. The main risk factor is a family history of MEN II." Excerpt from http://health.allrefer.com/health/multiple-endocrine-neoplasia-men-ii-info.html#definition .
Basically all that means is that I inherited a mutation in the RET gene (codon C634R) that causes medullary thyroid cancer, pheochromocytomas, and in my case hyperparathyroidism. Ninty seven percent of people with MEN2a develop medullary thyroid cancer, 50% develop pheos, and 20% develop parathyroid problems. Lucky me got all three. WHO I got this from I don't know. My mother and I are not on speaking terms so she won't tell me the results of her testing and she has denied me my birth father's true name my whole life. So I get to be considered the first in my family history from here on out to have this. We believe it came from my father's side though because I have 6 aunts and uncles and there was never word of this before now. It's hard not knowing for sure though and had my mother been a little less selfish I might not be as far advanced in my cancer as I am now. :(
Symptoms of MEN2 can include severe headache/migraine, heart palpitations, rapid heart rate, profuse sweating, chest pain/angina, abdominal pain, nervousness, irritability, loss of weight, diarrhea, cough, cough with blood, fatigue, back pain, increased urine output, increased thirst, loss of appetite, nausea, muscular weakness, depression, and personality changes.
I've had problems with some of these things over the years but I feel that I am one of the lucky ones. I am not in alot of pain and have only dealt with some things here and there over the years whereas some people have felt poorly and this has completely changed their daily life. For awhile I just thought I was a lazy person and just a weinie to be honest because all these little things would go on. I'm also a very stubborn person though so I have always just gone on and not complained about any of it.
There is no "cure" for this unfortunately although there is hope for on in the future. I am keeping my fingers crossed because my two oldest children have tested positive for MEN2a as well. Only my youngest son tested negative. Had I known about this when I was younger then I could have had a thyroidectomy and been saved from ever having the medullary cancer. We would have known to watch for the pheos and my bones and teeth could have been spared from the hyperparathyroidism. All of this could have been so simple yet someone's selfishness has made it so complex. Of course, I never would have had my children either sooooooo...
Since we've found this fairly early in my children they will have the thyroid surgery and hopefully be cured of the medullary cancer. We will unfortunately always have to watch for the pheos and they have a 1 in 5 chance of developing the hyperparathyroidism. At least they will never have to have my life and go through all I'm about to. For that I am very thankful.
What is Medullary Thyroid Cancer? There are four different kinds of thyroid cancer- papillary, follicular, medullary, and anaplastic. There is also recurring thyroid cancer as well. The first two are the ones most people get and can be treated and possibly cured with radiation therapy and chemotherapy. Anaplastic is a very fast moving and very deadly cancer. It's the one you just don't want to get. Recurring I honestly know nothing about and I apologize for that.
Medullary cancer is thankfully slow moving but it can not be cured by radiation therapy or chemo. In fact, neither one of those really does much of anything for my kind of cancer. This cancer is malignant and goes through C cells and calcitonin. Here is a link to help http://health.allrefer.com/health/medullary-carcinoma-of-thyroid-info.html . As you can see there, around 700 cases are diagnosed per year in the US of MTC. They give people like me who it has spread in and who have tumors over 1cm less than a 15% chance of survival after 5 years. Does that bother me? Some of course but I know of people who have had it worse than me for 20 years so I say "Pppppfffffffftttttt" to their 15%. ;)
What are Pheochromocytomas? Pheos are adrenal tumors that are usually bilateral in MEN patients. Only 10% of the time are they malignant so the cure for them is to have an adrenalectomy. Some people only get one gland out and the tumors never come back. Others battle them constantly until both glands are removed. I have a tumor on each gland and will have to get both glands removed. My children thus far have tested negative for pheos but we will always have to watch and wait.
The most common symptom of pheos is high blood pressure. Other symptoms can be found here along with more information http://health.allrefer.com/health/pheochromocytoma-info.html#definition . All three of us have normal blood pressure which in my case the doctors find interesting. With my pheos as big as they are I guess I should be suffering from hypertension but I have always had normal to low BP... thankfully.
What is Hyperparathyroidism? "Hyperparathyroidism is excessive production of parathyroid hormone by the parathyroid glands." http://health.allrefer.com/health/hyperparathyroidism-info.html As you can read at that link some of the symptoms are a royal pain in the butt. For me the itching, "bone" pain, ulcers, just over all achiness, and fatigue get to me. The fact that this has sucked most of the calcium from my teeth upsets me because my teeth are horrible and in a bad state of decay that no dentist could have ever saved me from. I've also had more kidney and UTI infections than I can count and blockages to my right kidney as well. The hypercalcemia that results from it has caused a slight curve in my spine (scholiosis), memory loss, bone and muscular pains, and flank pain as well. I think I hate the hypercalcemia more than anything.
Hopefully what I've posted and the links help you understand this more. You can also Google for MEN2a, pheos, or any of the other stuff to get more information. Thank you for reading.
I figured that I would post some information about MEN2a and the things that come with it as well as links for anyone who is interested to read.
"Multiple Endocrine Neoplasia II (MEN II) is a hereditary disorder in which patients develop a type of thyroid cancer accompanied by recurring cancer of the adrenal glands. One type of this disease (MEN IIa) is also associated with overgrowth (hyperplasia) of the parathyroid gland. The cause of MEN II is genetic -- a mutation in a gene called RET. Multiple tumors may appear in the same person, but not necessarily at the same time. The adrenal tumor is a pheochromocytoma and the thyroid tumor is a medullary carcinoma of the thyroid. The disorder may occur at any age, and affects men and women equally. The main risk factor is a family history of MEN II." Excerpt from http://health.allrefer.com/health/multiple-endocrine-neoplasia-men-ii-info.html#definition .
Basically all that means is that I inherited a mutation in the RET gene (codon C634R) that causes medullary thyroid cancer, pheochromocytomas, and in my case hyperparathyroidism. Ninty seven percent of people with MEN2a develop medullary thyroid cancer, 50% develop pheos, and 20% develop parathyroid problems. Lucky me got all three. WHO I got this from I don't know. My mother and I are not on speaking terms so she won't tell me the results of her testing and she has denied me my birth father's true name my whole life. So I get to be considered the first in my family history from here on out to have this. We believe it came from my father's side though because I have 6 aunts and uncles and there was never word of this before now. It's hard not knowing for sure though and had my mother been a little less selfish I might not be as far advanced in my cancer as I am now. :(
Symptoms of MEN2 can include severe headache/migraine, heart palpitations, rapid heart rate, profuse sweating, chest pain/angina, abdominal pain, nervousness, irritability, loss of weight, diarrhea, cough, cough with blood, fatigue, back pain, increased urine output, increased thirst, loss of appetite, nausea, muscular weakness, depression, and personality changes.
I've had problems with some of these things over the years but I feel that I am one of the lucky ones. I am not in alot of pain and have only dealt with some things here and there over the years whereas some people have felt poorly and this has completely changed their daily life. For awhile I just thought I was a lazy person and just a weinie to be honest because all these little things would go on. I'm also a very stubborn person though so I have always just gone on and not complained about any of it.
There is no "cure" for this unfortunately although there is hope for on in the future. I am keeping my fingers crossed because my two oldest children have tested positive for MEN2a as well. Only my youngest son tested negative. Had I known about this when I was younger then I could have had a thyroidectomy and been saved from ever having the medullary cancer. We would have known to watch for the pheos and my bones and teeth could have been spared from the hyperparathyroidism. All of this could have been so simple yet someone's selfishness has made it so complex. Of course, I never would have had my children either sooooooo...
Since we've found this fairly early in my children they will have the thyroid surgery and hopefully be cured of the medullary cancer. We will unfortunately always have to watch for the pheos and they have a 1 in 5 chance of developing the hyperparathyroidism. At least they will never have to have my life and go through all I'm about to. For that I am very thankful.
What is Medullary Thyroid Cancer? There are four different kinds of thyroid cancer- papillary, follicular, medullary, and anaplastic. There is also recurring thyroid cancer as well. The first two are the ones most people get and can be treated and possibly cured with radiation therapy and chemotherapy. Anaplastic is a very fast moving and very deadly cancer. It's the one you just don't want to get. Recurring I honestly know nothing about and I apologize for that.
Medullary cancer is thankfully slow moving but it can not be cured by radiation therapy or chemo. In fact, neither one of those really does much of anything for my kind of cancer. This cancer is malignant and goes through C cells and calcitonin. Here is a link to help http://health.allrefer.com/health/medullary-carcinoma-of-thyroid-info.html . As you can see there, around 700 cases are diagnosed per year in the US of MTC. They give people like me who it has spread in and who have tumors over 1cm less than a 15% chance of survival after 5 years. Does that bother me? Some of course but I know of people who have had it worse than me for 20 years so I say "Pppppfffffffftttttt" to their 15%. ;)
What are Pheochromocytomas? Pheos are adrenal tumors that are usually bilateral in MEN patients. Only 10% of the time are they malignant so the cure for them is to have an adrenalectomy. Some people only get one gland out and the tumors never come back. Others battle them constantly until both glands are removed. I have a tumor on each gland and will have to get both glands removed. My children thus far have tested negative for pheos but we will always have to watch and wait.
The most common symptom of pheos is high blood pressure. Other symptoms can be found here along with more information http://health.allrefer.com/health/pheochromocytoma-info.html#definition . All three of us have normal blood pressure which in my case the doctors find interesting. With my pheos as big as they are I guess I should be suffering from hypertension but I have always had normal to low BP... thankfully.
What is Hyperparathyroidism? "Hyperparathyroidism is excessive production of parathyroid hormone by the parathyroid glands." http://health.allrefer.com/health/hyperparathyroidism-info.html As you can read at that link some of the symptoms are a royal pain in the butt. For me the itching, "bone" pain, ulcers, just over all achiness, and fatigue get to me. The fact that this has sucked most of the calcium from my teeth upsets me because my teeth are horrible and in a bad state of decay that no dentist could have ever saved me from. I've also had more kidney and UTI infections than I can count and blockages to my right kidney as well. The hypercalcemia that results from it has caused a slight curve in my spine (scholiosis), memory loss, bone and muscular pains, and flank pain as well. I think I hate the hypercalcemia more than anything.
Hopefully what I've posted and the links help you understand this more. You can also Google for MEN2a, pheos, or any of the other stuff to get more information. Thank you for reading.
Saturday, December 25, 2004
Just A Line
I had emailed Dr. Wells to see what was going on and get an update on when they might schedule my adrenalectomy. I honestly didn't expect to hear back from him until after Christmas but today he emailed me back telling me that he would call me on Monday and some other stuff. The last sentence of his email made me smile because it's nice to know SOMEONE in the medical profession honestly cares.
"Hang in there. I am committed to taking good care of you and your children. Sam Wells"
To me what he said is a big deal. One of the most respected doctors in the endocrine field is committed to taking good care of us. It may sound stupid but it helps me to breathe a little easier now. :)
I'll update after I talk to Dr. Wells on Monday. Hopefully we can get things rolling soon even though in his email it sounded like I might not get to start the study at the end of January like we had hoped. I know I'm still going to be in it, just not sure on specifics now.
Wish us luck and thank you to everyone on Life With Heathens (my site), MD, Mamauniverse, Amitymama, and yes even you ladies on 20ish (wink) who have been keeping us in your thoughts and prayers. We appreciate it more than you know and it means the world to me.
Happy Holidays!
Jo and Crew
I had emailed Dr. Wells to see what was going on and get an update on when they might schedule my adrenalectomy. I honestly didn't expect to hear back from him until after Christmas but today he emailed me back telling me that he would call me on Monday and some other stuff. The last sentence of his email made me smile because it's nice to know SOMEONE in the medical profession honestly cares.
"Hang in there. I am committed to taking good care of you and your children. Sam Wells"
To me what he said is a big deal. One of the most respected doctors in the endocrine field is committed to taking good care of us. It may sound stupid but it helps me to breathe a little easier now. :)
I'll update after I talk to Dr. Wells on Monday. Hopefully we can get things rolling soon even though in his email it sounded like I might not get to start the study at the end of January like we had hoped. I know I'm still going to be in it, just not sure on specifics now.
Wish us luck and thank you to everyone on Life With Heathens (my site), MD, Mamauniverse, Amitymama, and yes even you ladies on 20ish (wink) who have been keeping us in your thoughts and prayers. We appreciate it more than you know and it means the world to me.
Happy Holidays!
Jo and Crew
Thursday, December 23, 2004
Yet MORE Incompetance!
I called the Pediatric Endocrinologist in Florida yesterday to find out whether or not she ever referred the kids to Shands or not. I got the answering machine telling me that starting this past Monday they were on Christmas vacation until next Monday. Needless to say I was BEYOND ticked off! She was suppose to call me last Thursday and yet she could never be bothered. That just pisses me off! After calling Vin and ranting to him about it we decided that yet AGAIN we would have to do everything ourselves. So I emailed Dr. JS at Shands explaining things to her while Vin called her office and left a message for her to call me back.
Well of course she or her office never called but this morning I get this email...
"Dr. M at Shands is probably the world's expert on thyroid tumors and has had excellent results with one of the surgeons here at Shands. We can see you the first Friday after New Years or you can be seen by Dr. M. We will coordinate and determine the earliest time we can schedule an appointment and get the ball rolling for you. Dr. W did contact me, and I let her know what resources are available here. She is an excellent endocrinologist and may have already made the referral. We will proceed to get things done as quickly as possible."
Ummmmmm okay who the hell is Dr. M? What does a thyroid TUMOR expert have to do with my kids who have NO thyroid tumors? Was she talking about ME? Because if so no thank you, I'll stick with Duke thank you very much. Can she be anymore stinking vague??? This email doesn't tell me much of anything and it kind of ticks me off. Now if she planned on calling me and setting things up this would be fine but they can see "you" the first Friday after New Years blah blah blah and then she says they will coordinate and determine the earliest time we can schedule an appointment?? An appointment for who? With who?
I figured it would be better to post here before I email her back because I want to just go off on her completely. Please, be as vague as possible and run us around in circles and let US do all the work again. Please... we insist.
I also realize I was too hard on Vin before. I do feel he is thinking more with his head than his heart but it's how he is and I know this is hard on him as well. I'm afraid I'm quite moody thanks to not only my own illness but all the crap we deal with as well. I don't stop to think like I should that he might be stressed out as well. You would think after almost 5 years I would be better at this co-parenting thing but I'm not. I still go into defense mode when it comes to my kids and I still try to make all the decisions myself. *sigh* Things would be so much easier around here if we didn't have so many attitudes and thick heads. LOL
I called the Pediatric Endocrinologist in Florida yesterday to find out whether or not she ever referred the kids to Shands or not. I got the answering machine telling me that starting this past Monday they were on Christmas vacation until next Monday. Needless to say I was BEYOND ticked off! She was suppose to call me last Thursday and yet she could never be bothered. That just pisses me off! After calling Vin and ranting to him about it we decided that yet AGAIN we would have to do everything ourselves. So I emailed Dr. JS at Shands explaining things to her while Vin called her office and left a message for her to call me back.
Well of course she or her office never called but this morning I get this email...
"Dr. M at Shands is probably the world's expert on thyroid tumors and has had excellent results with one of the surgeons here at Shands. We can see you the first Friday after New Years or you can be seen by Dr. M. We will coordinate and determine the earliest time we can schedule an appointment and get the ball rolling for you. Dr. W did contact me, and I let her know what resources are available here. She is an excellent endocrinologist and may have already made the referral. We will proceed to get things done as quickly as possible."
Ummmmmm okay who the hell is Dr. M? What does a thyroid TUMOR expert have to do with my kids who have NO thyroid tumors? Was she talking about ME? Because if so no thank you, I'll stick with Duke thank you very much. Can she be anymore stinking vague??? This email doesn't tell me much of anything and it kind of ticks me off. Now if she planned on calling me and setting things up this would be fine but they can see "you" the first Friday after New Years blah blah blah and then she says they will coordinate and determine the earliest time we can schedule an appointment?? An appointment for who? With who?
I figured it would be better to post here before I email her back because I want to just go off on her completely. Please, be as vague as possible and run us around in circles and let US do all the work again. Please... we insist.
I also realize I was too hard on Vin before. I do feel he is thinking more with his head than his heart but it's how he is and I know this is hard on him as well. I'm afraid I'm quite moody thanks to not only my own illness but all the crap we deal with as well. I don't stop to think like I should that he might be stressed out as well. You would think after almost 5 years I would be better at this co-parenting thing but I'm not. I still go into defense mode when it comes to my kids and I still try to make all the decisions myself. *sigh* Things would be so much easier around here if we didn't have so many attitudes and thick heads. LOL
Tuesday, December 21, 2004
Kids' Calcitonin Results For Cancer
Dr. L called me today with BigB and Sis's calcitonin level results. Calcitonin is what they test to see if the medullary cancer is present/has started. Normal levels are 5 or under.
She said that Big B is at 28 and Sis is at 24 meaning that although the numbers are low.... the medullary cancer has started in them. She tried to make it sound like it's not a big deal but considering I've researched this well and know EXACTLY what everything means, I know that it's much better than if it was higher but still it isn't what you hope for. I mean, cancer is cancer no matter how much or little a person has. The fact that neither one has any lumps or swollen lymph nodes that we could feel in their neck though is a good sign. All we can hope for now is that it hasn't spread past their thyroids. If it has stayed there and not gone near any lymph nodes then the thyroidectomy will still rid them of it.
I just keep thinking over and over that this just SUCKS!! I think I made the mistake of getting my hopes up after the pheo results came back negative. Why I let myself hope I don't know. I guess I just wanted and needed to hope for SOMETHING.
So Vin now feels that I should get the kids' thyroidectomies at the same time I get my adrenalectomy. I just can't get through to him that I HAVE to be there for them when they get this done. This is the biggest thing to ever happen to them and I NEED to be there. It's my job. I'm their mom. Period! He talks about what's convenient but I talk about the heart. Something we also have problems with. *sigh*
The Pediatric Endocrinologist from Florida STILL hasn't bothered to call me to say whether or not Shands in Gainesville will take on the kids' cases. So I get to call her tomorrow and ask her what the hell is going on.
I just have a problem understanding why we're paying people to ignore us, blow us off, and screw up our stuff. What is so hard about them calling me when they say they will or even at least in that same WEEK??! I am thus far very not impressed with doctors.
Dr. L called me today with BigB and Sis's calcitonin level results. Calcitonin is what they test to see if the medullary cancer is present/has started. Normal levels are 5 or under.
She said that Big B is at 28 and Sis is at 24 meaning that although the numbers are low.... the medullary cancer has started in them. She tried to make it sound like it's not a big deal but considering I've researched this well and know EXACTLY what everything means, I know that it's much better than if it was higher but still it isn't what you hope for. I mean, cancer is cancer no matter how much or little a person has. The fact that neither one has any lumps or swollen lymph nodes that we could feel in their neck though is a good sign. All we can hope for now is that it hasn't spread past their thyroids. If it has stayed there and not gone near any lymph nodes then the thyroidectomy will still rid them of it.
I just keep thinking over and over that this just SUCKS!! I think I made the mistake of getting my hopes up after the pheo results came back negative. Why I let myself hope I don't know. I guess I just wanted and needed to hope for SOMETHING.
So Vin now feels that I should get the kids' thyroidectomies at the same time I get my adrenalectomy. I just can't get through to him that I HAVE to be there for them when they get this done. This is the biggest thing to ever happen to them and I NEED to be there. It's my job. I'm their mom. Period! He talks about what's convenient but I talk about the heart. Something we also have problems with. *sigh*
The Pediatric Endocrinologist from Florida STILL hasn't bothered to call me to say whether or not Shands in Gainesville will take on the kids' cases. So I get to call her tomorrow and ask her what the hell is going on.
I just have a problem understanding why we're paying people to ignore us, blow us off, and screw up our stuff. What is so hard about them calling me when they say they will or even at least in that same WEEK??! I am thus far very not impressed with doctors.
Thursday, December 16, 2004
Another Talk With Dr. Wells
Tuesday night I emailed Dr. Wells about what my endo here had said. To be honest, I trust his word more than her's because he is a specialist and has 30 years experience with MEN, MTC, and so on. My endo is a general endocrinologist and although she is trying her best, I'm her first MEN case soooooooooooooo.
Yesterday (December 15th) I talked to Dr Wells on the phone and he said that yes I can have the laparoscopic surgery done on my adrenal glands and whether I'm in the study or not and whether I want to remove the tumors or not he would STILL recommend it to me because it is much easier. I asked him how he could be certain that the pheos are only on my glands and not what the spots in my liver and so on are as well. He told me (and this was new to me) that they have yet to see a patient with MEN2a who had malignant pheochromocytomas or pheos outside the adrenal glands. He has no problems answering my questions or calling me back anytime I call. I like that. Heck, he's been the Director of the American Association of Surgeons before and I can get ahold of HIM.
I told him I want in the study. I also told him that even if it does nothing more than shrinks a tumor or two I will consider it a success because it holds hope for my children. He told me "Oh no no we are working on a cure here. You will definately see more happen than a few shrinking tumors". He says this drug has shown remarkable results in Phase I of the study and seems to be doing well in the Phase II now which is what I would be in. He sounds really confidant... seriously.
We discussed me having the adrenalectomy at Duke University and he said he has already spoken to a Dr. John Olsen who "who is highly experienced in laparoscopic adrenalectomy. He is top class and you will like him". I asked him if I needed the Octreotide Scans again and told him Vin was wondering how they could know for sure that my pheos are pheos (which I told you how above). He said the Octreotide scan doesn't always tell you what they want to know and he doesn't know why they are doing it. It's pretty much a waste of money right now. He said that everything I've told him thus far is pretty textbook and he has seen plenty of MEN2a patients with exactly the same things I have going on and is pretty confident. They will of course look over my medical records and my CT scans that I had done. Oh and when I told him Tampa wanted to do another CT scan he said "why?". I told him they said to see how much growth there was. He told me these things wouldn't really grow much at all in that short of time so there's no sense in it. He talked to me about the alpha-blocker I would be on for the 10 days before the surgery. Most likely I will be on Dibenzyline for that.
Another thing he did was ask me what we had set up for the kids thus far. I told him as of today NOTHING and explained a little. He told me that if I wanted I could have the kids' thyroidectomies done at the same time I get my adrenalectomy done. I honestly don't know how I feel about that because I want to be there to take care of them when they have it so I might have to put it off until February (their surgeries). He said that we should be able to do my surgery the first or second week of January and that will give me about 10 days to two weeks of recovery before I start the study.
He told me they are very interested in me both because of this study but as a person as well and that they will take good care of me. That was nice to hear. I'm waiting to hear back from him and trying to get an actual surgery date set up. Wish me luck!!!
Tuesday night I emailed Dr. Wells about what my endo here had said. To be honest, I trust his word more than her's because he is a specialist and has 30 years experience with MEN, MTC, and so on. My endo is a general endocrinologist and although she is trying her best, I'm her first MEN case soooooooooooooo.
Yesterday (December 15th) I talked to Dr Wells on the phone and he said that yes I can have the laparoscopic surgery done on my adrenal glands and whether I'm in the study or not and whether I want to remove the tumors or not he would STILL recommend it to me because it is much easier. I asked him how he could be certain that the pheos are only on my glands and not what the spots in my liver and so on are as well. He told me (and this was new to me) that they have yet to see a patient with MEN2a who had malignant pheochromocytomas or pheos outside the adrenal glands. He has no problems answering my questions or calling me back anytime I call. I like that. Heck, he's been the Director of the American Association of Surgeons before and I can get ahold of HIM.
I told him I want in the study. I also told him that even if it does nothing more than shrinks a tumor or two I will consider it a success because it holds hope for my children. He told me "Oh no no we are working on a cure here. You will definately see more happen than a few shrinking tumors". He says this drug has shown remarkable results in Phase I of the study and seems to be doing well in the Phase II now which is what I would be in. He sounds really confidant... seriously.
We discussed me having the adrenalectomy at Duke University and he said he has already spoken to a Dr. John Olsen who "who is highly experienced in laparoscopic adrenalectomy. He is top class and you will like him". I asked him if I needed the Octreotide Scans again and told him Vin was wondering how they could know for sure that my pheos are pheos (which I told you how above). He said the Octreotide scan doesn't always tell you what they want to know and he doesn't know why they are doing it. It's pretty much a waste of money right now. He said that everything I've told him thus far is pretty textbook and he has seen plenty of MEN2a patients with exactly the same things I have going on and is pretty confident. They will of course look over my medical records and my CT scans that I had done. Oh and when I told him Tampa wanted to do another CT scan he said "why?". I told him they said to see how much growth there was. He told me these things wouldn't really grow much at all in that short of time so there's no sense in it. He talked to me about the alpha-blocker I would be on for the 10 days before the surgery. Most likely I will be on Dibenzyline for that.
Another thing he did was ask me what we had set up for the kids thus far. I told him as of today NOTHING and explained a little. He told me that if I wanted I could have the kids' thyroidectomies done at the same time I get my adrenalectomy done. I honestly don't know how I feel about that because I want to be there to take care of them when they have it so I might have to put it off until February (their surgeries). He said that we should be able to do my surgery the first or second week of January and that will give me about 10 days to two weeks of recovery before I start the study.
He told me they are very interested in me both because of this study but as a person as well and that they will take good care of me. That was nice to hear. I'm waiting to hear back from him and trying to get an actual surgery date set up. Wish me luck!!!
Wednesday, December 15, 2004
Kids' Pediatric Endo Appointment A WASTE!!
Well today was the kids' appointment in Florida(almost two hour drive), with the Pediatric Endocrinologist.
We got up at 5am this morning, got ready, and we were out the door by 6:10am. Lil Man was wide awake which surprised me. About an hour into the trip we were all worried that I took a wrong road and wondering if I should turn around and go back when I finally saw a sign that said we were on the right road. We got there an hour before the kids' appointment so we went back to the gas station so they could use the bathroom and then went back to the doctor's office. All three kids did wonderfully on the trip. Not a peep from anyone and the trip actually went pretty quickly.
Got into the office, signed in, let them make copies of the kids test results thus far, and a few minutes later we went back.
Big B is 5'6 1/2" tall, 114 1/2lbs, and his blood pressure was 100/74 if I remember right.
Sis is 55 1/2" tall ( four and a half feet tall I guess?), weighs 71lbs (YAY she's finally over 70lbs!!!), and her BP was 88/68.
Doctor came in and pretty much right away let us know that she had talked to my endo and they had decided that it would be more beneficial for the kids to be seen in Gainesville, FL at Shands which has a Pediatric center. This appointment was pretty much worthless because this ped endo will be turning over the kids' cases to Gainesville. So we made a trip for NOTHING and the kicker is that MY doctor supposedly knew that before we even left. So she sent me there for nothing. I will find out for sure when I email her later and get the whole story.
So after about 30 minutes there of the doctor asking the kids if they understood what was going on (to which they both said yes and Sis informed her that her mommy is very smart and knows everything about this. ) we left. She did say that neither one has any lumps in their throat or lymph nodes meaning the chances of either having developed cancer yet is pretty slim. She also said that only one in five people with MEN2a develops hyperparathyroidism so the chances of either of the kids getting it is slim as well.
Left the doctor's office, realized it was too early to get lunch, drove home, dropped Big B off at school around 11:30a, got some lunch, and then dropped Sis off at school even though she was considered absent for the whole day because it was after noon when we got there. I told them had I known that I wouldn't have wasted my time bringing her to which I got a shocked look from the secretary. Whatever lady... not in the mood.
So came home and read my email from Dr. Wells. Called him, he called me back, and... on to the next update eh?
Well today was the kids' appointment in Florida(almost two hour drive), with the Pediatric Endocrinologist.
We got up at 5am this morning, got ready, and we were out the door by 6:10am. Lil Man was wide awake which surprised me. About an hour into the trip we were all worried that I took a wrong road and wondering if I should turn around and go back when I finally saw a sign that said we were on the right road. We got there an hour before the kids' appointment so we went back to the gas station so they could use the bathroom and then went back to the doctor's office. All three kids did wonderfully on the trip. Not a peep from anyone and the trip actually went pretty quickly.
Got into the office, signed in, let them make copies of the kids test results thus far, and a few minutes later we went back.
Big B is 5'6 1/2" tall, 114 1/2lbs, and his blood pressure was 100/74 if I remember right.
Sis is 55 1/2" tall ( four and a half feet tall I guess?), weighs 71lbs (YAY she's finally over 70lbs!!!), and her BP was 88/68.
Doctor came in and pretty much right away let us know that she had talked to my endo and they had decided that it would be more beneficial for the kids to be seen in Gainesville, FL at Shands which has a Pediatric center. This appointment was pretty much worthless because this ped endo will be turning over the kids' cases to Gainesville. So we made a trip for NOTHING and the kicker is that MY doctor supposedly knew that before we even left. So she sent me there for nothing. I will find out for sure when I email her later and get the whole story.
So after about 30 minutes there of the doctor asking the kids if they understood what was going on (to which they both said yes and Sis informed her that her mommy is very smart and knows everything about this. ) we left. She did say that neither one has any lumps in their throat or lymph nodes meaning the chances of either having developed cancer yet is pretty slim. She also said that only one in five people with MEN2a develops hyperparathyroidism so the chances of either of the kids getting it is slim as well.
Left the doctor's office, realized it was too early to get lunch, drove home, dropped Big B off at school around 11:30a, got some lunch, and then dropped Sis off at school even though she was considered absent for the whole day because it was after noon when we got there. I told them had I known that I wouldn't have wasted my time bringing her to which I got a shocked look from the secretary. Whatever lady... not in the mood.
So came home and read my email from Dr. Wells. Called him, he called me back, and... on to the next update eh?
Tuesday, December 14, 2004
Appointment With Regular Endocrinologist
Waited over an hour in the waiting room, went in, 5 minutes later Dr. L came in, told me that I can't have laparoscopic surgery, let me know considering the study wasn't really smart, told me to not worry about being cut open and that lots of her patients have no adrenal glands no biggie, told me to get daycare to take care of Lil Man after surgery, gave Lil Man dirty looks because he was misbehaving, seemed irritated that I told her to call Dr. Wells, gave me copies of the kids' tests, told me that my problems with focusing and remembering things (I can't go anywhere by myself anymore because I can't remember what I'm doing from one minute to the next) are most likely from stress and/or depression, and I left.
The kids 24 hour urine test came back and as far as that goes they aren't showing any signs of pheos yet. The rest of the test results are currently MIA. No clue where they are or why they weren't with these test results. So the good news is no pheos in the kids yet.
I hate doctors. I really really hate doctors. That is the suckiest part of all this. I hate doctors and the Fates KNOW I hate doctors so they stick me having to deal with them every month for the rest of my life.
The longer version of what I said before is that I guess they were running way behind (I waited an hour to see the doctor) and I don’t know if that is what made the doctor moody/distant or what but she was NOT acting how I expected. I had told her in an email that the way things are at home I just would rather not get treatment right now because I’m safer that way. It's just hard dealing with all the attitudes at home some days. She made the appointment with me because she said that worried her and she wanted to talk to me. Well from the moment she entered the room she was trying to rush me out the door.
I started to tell her about the study with Dr. Wells and she cut me off before I even got to start. Basically she let me know that she thought it was stupid of me to even consider the laparoscopic surgery. She even went so far to tell me that I couldn’t have it done because my tumors were too big. When I said we would be leaving the tumors in my liver and intestine she got this look on her face like she couldn’t believe I would even consider such a thing. *sigh*
I told her I’m having trouble focusing lately and that I can’t go shopping by myself anymore because I will forget what I’m doing and also end up in a part of the store and not remember how I got there. If the kids or Vin is with me it’s not a big deal but I went to Walmart the other night for what should have been a half hour trip TOPS and was gone for 2 hours. Ugh. So anyway- she informed me that it was most likely due to stress or depression and she would hate to blame EVERYTHING on the pheos.
Ummmmmmmmm no actually you can blame that on the hyperparathyroidism although she now says my calcium levels were fine. Okay then WHY are we saying I have hyperparathyroidism??? Funny, I’m staring at test results that show my calcium out of normal range and my parathyroid hormone out of range as well. It MUST be that I am just a depressed mess. *eyeroll* Why do doctors always think if a person goes through a rough spot then they MUST be depressed? Maybe some of us actually can handle bad things happening in our lives. I wish they would consider that.
This really sucks and I am stressed out and at times things seem depressing but I don’t have time for that crap! I have three kids to worry about so I will be damned if I’m going to get depression thank you very much!! Oh and for the record- I've been under WAY more stress before so stress is not causing my problems right now. It takes alot more than this crap to break me and if I was depressed I wouldn't be the one doing so much to try to get this stuff taken care of!!!!
Anyway- so I didn’t get to tell her about the study, she flaked me off, told me I need to get the scans in Tampa, and told me basically to forget the laparoscopic adrenalectomy. Like I said, I hope she was just having a bad day because I was really starting to like her.
Waited over an hour in the waiting room, went in, 5 minutes later Dr. L came in, told me that I can't have laparoscopic surgery, let me know considering the study wasn't really smart, told me to not worry about being cut open and that lots of her patients have no adrenal glands no biggie, told me to get daycare to take care of Lil Man after surgery, gave Lil Man dirty looks because he was misbehaving, seemed irritated that I told her to call Dr. Wells, gave me copies of the kids' tests, told me that my problems with focusing and remembering things (I can't go anywhere by myself anymore because I can't remember what I'm doing from one minute to the next) are most likely from stress and/or depression, and I left.
The kids 24 hour urine test came back and as far as that goes they aren't showing any signs of pheos yet. The rest of the test results are currently MIA. No clue where they are or why they weren't with these test results. So the good news is no pheos in the kids yet.
I hate doctors. I really really hate doctors. That is the suckiest part of all this. I hate doctors and the Fates KNOW I hate doctors so they stick me having to deal with them every month for the rest of my life.
The longer version of what I said before is that I guess they were running way behind (I waited an hour to see the doctor) and I don’t know if that is what made the doctor moody/distant or what but she was NOT acting how I expected. I had told her in an email that the way things are at home I just would rather not get treatment right now because I’m safer that way. It's just hard dealing with all the attitudes at home some days. She made the appointment with me because she said that worried her and she wanted to talk to me. Well from the moment she entered the room she was trying to rush me out the door.
I started to tell her about the study with Dr. Wells and she cut me off before I even got to start. Basically she let me know that she thought it was stupid of me to even consider the laparoscopic surgery. She even went so far to tell me that I couldn’t have it done because my tumors were too big. When I said we would be leaving the tumors in my liver and intestine she got this look on her face like she couldn’t believe I would even consider such a thing. *sigh*
I told her I’m having trouble focusing lately and that I can’t go shopping by myself anymore because I will forget what I’m doing and also end up in a part of the store and not remember how I got there. If the kids or Vin is with me it’s not a big deal but I went to Walmart the other night for what should have been a half hour trip TOPS and was gone for 2 hours. Ugh. So anyway- she informed me that it was most likely due to stress or depression and she would hate to blame EVERYTHING on the pheos.
Ummmmmmmmm no actually you can blame that on the hyperparathyroidism although she now says my calcium levels were fine. Okay then WHY are we saying I have hyperparathyroidism??? Funny, I’m staring at test results that show my calcium out of normal range and my parathyroid hormone out of range as well. It MUST be that I am just a depressed mess. *eyeroll* Why do doctors always think if a person goes through a rough spot then they MUST be depressed? Maybe some of us actually can handle bad things happening in our lives. I wish they would consider that.
This really sucks and I am stressed out and at times things seem depressing but I don’t have time for that crap! I have three kids to worry about so I will be damned if I’m going to get depression thank you very much!! Oh and for the record- I've been under WAY more stress before so stress is not causing my problems right now. It takes alot more than this crap to break me and if I was depressed I wouldn't be the one doing so much to try to get this stuff taken care of!!!!
Anyway- so I didn’t get to tell her about the study, she flaked me off, told me I need to get the scans in Tampa, and told me basically to forget the laparoscopic adrenalectomy. Like I said, I hope she was just having a bad day because I was really starting to like her.
Monday, December 13, 2004
December 13, 2004- Kids Bloodwork Redone
Kids ended up having to go back AGAIN to have blood drawn for a third time. This time the reason was because the doctor got so caught up in how sad she was for me when she told me the oldest two have MEN2a that she forgot to order the calcitonin test. It upsets me but at the same time, I can forgive her because she really DOES care alot about us.
So last Wednesday I was going to take them back again to have it done when they realized that they DO have the Elma cream (numbing cream) to use on Sis so she doesn't feel the needle stick when they draw blood. So we picked that up from the Pharmacy there and then went and got our Christmas tree. On Thursday, Big B's school bus broke down and he didn't get home until after 5pm so we didn't get to go then either.
I took the kids up on Friday and this girl I haven't seen before informs me that if they draw the blood it will go back because the people at Quest Laboratories aren't in on the weekend. I told her she has GOT to be kidding me! She says that she can go ahead and draw the blood anyway if I want but it would go bad and we'd just have to come back. I couldn't believe her stupid ass! I looked at her and said "Why in the hell would I have you stick my kids yet AGAIN for no reason whatsoever? It's bad enough we're here a THIRD time and two of those times are because of screw ups!" Then I told her to make sure they are ready for us on Monday and to make sure they don't screw it up again and know whether or not to freeze the blood or not.
So we showed up today after Big B got out of school and go back and it's the usual two girls that I like who are working the lab and drawing blood. Theresa (Lab Tech) asks me "Who told you they couldn't take blood on Friday?". I tell her that some girl with brownish black hair in a white coat that I've never seen before. She then asks me "Was she tall?". I told her "Hun, everyone is short to me". She laughed and said that was true and then I told her that the girl was younger and looked in her early 20s. I asked her why? She then tells me that had the girl bothered to look in the lab book she would have seen that the samples need to be FROZEN for the test they were doing and the blood could have been drawn on Friday just fine saving us today's trip. I was HIGHLY ticked off to say the least!! It looks like I will be filing yet another report tomorrow when I go to my appointment with my endo. *sigh* This crap gets real old real quick.
I haven't heard back from Dr. Wells yet but it could be because he hasn't been able to reach Dr. L yet. I'm going to make sure she knows he is trying to reach her and give her his phone numbers to speed things along a little bit. She wants to talk to me about some stuff and I plan on getting whatever results of the kids' are in and also copies to take to their Pediatric Endo appointment on Wednesday. I also have to talk to her about the fact that my problems with focusing and memory lapses are getting worse. I would also be willing to bet she hasn't heard a single thing from Tampa yet either.
Wednesday the kids have an appointment with Dr. NWin Florida. She's a pediatric endocrinologist who I guess will take over the kids' cases. I'm going to see about pushing for some surgery dates for the kids here real soon so we can get them done. I just don't want them to have to go through this too. Hopefully their pheo and medullary cancer tests come back clean and the surgeon here can do their surgeries. I like him and trust him and hope eventually maybe he can do one of my surgeries as well. Anyway, this ped endo will be the one who handles the kids' meds after their surgeries. The nice thing is she comes here once a month so that will mean we won't have to constantly travel there.
I think Vin finally took me seriously about the adrenalectomy today when I emailed him a link about it and then a link about adrenal crisis. He now knows exactly what we have to look forward to and exactly how sick I can get if things aren't taken care of right. It's about time is all I can say. I know this has all got to be really hard on him too but I need him to be there for me because if him and these kids aren't it could seriously cost me my life. That's so stinking scary! :( Anyway- I'll update again tomorrow after my appointment. Keeping my fingers crossed.
Kids ended up having to go back AGAIN to have blood drawn for a third time. This time the reason was because the doctor got so caught up in how sad she was for me when she told me the oldest two have MEN2a that she forgot to order the calcitonin test. It upsets me but at the same time, I can forgive her because she really DOES care alot about us.
So last Wednesday I was going to take them back again to have it done when they realized that they DO have the Elma cream (numbing cream) to use on Sis so she doesn't feel the needle stick when they draw blood. So we picked that up from the Pharmacy there and then went and got our Christmas tree. On Thursday, Big B's school bus broke down and he didn't get home until after 5pm so we didn't get to go then either.
I took the kids up on Friday and this girl I haven't seen before informs me that if they draw the blood it will go back because the people at Quest Laboratories aren't in on the weekend. I told her she has GOT to be kidding me! She says that she can go ahead and draw the blood anyway if I want but it would go bad and we'd just have to come back. I couldn't believe her stupid ass! I looked at her and said "Why in the hell would I have you stick my kids yet AGAIN for no reason whatsoever? It's bad enough we're here a THIRD time and two of those times are because of screw ups!" Then I told her to make sure they are ready for us on Monday and to make sure they don't screw it up again and know whether or not to freeze the blood or not.
So we showed up today after Big B got out of school and go back and it's the usual two girls that I like who are working the lab and drawing blood. Theresa (Lab Tech) asks me "Who told you they couldn't take blood on Friday?". I tell her that some girl with brownish black hair in a white coat that I've never seen before. She then asks me "Was she tall?". I told her "Hun, everyone is short to me". She laughed and said that was true and then I told her that the girl was younger and looked in her early 20s. I asked her why? She then tells me that had the girl bothered to look in the lab book she would have seen that the samples need to be FROZEN for the test they were doing and the blood could have been drawn on Friday just fine saving us today's trip. I was HIGHLY ticked off to say the least!! It looks like I will be filing yet another report tomorrow when I go to my appointment with my endo. *sigh* This crap gets real old real quick.
I haven't heard back from Dr. Wells yet but it could be because he hasn't been able to reach Dr. L yet. I'm going to make sure she knows he is trying to reach her and give her his phone numbers to speed things along a little bit. She wants to talk to me about some stuff and I plan on getting whatever results of the kids' are in and also copies to take to their Pediatric Endo appointment on Wednesday. I also have to talk to her about the fact that my problems with focusing and memory lapses are getting worse. I would also be willing to bet she hasn't heard a single thing from Tampa yet either.
Wednesday the kids have an appointment with Dr. NWin Florida. She's a pediatric endocrinologist who I guess will take over the kids' cases. I'm going to see about pushing for some surgery dates for the kids here real soon so we can get them done. I just don't want them to have to go through this too. Hopefully their pheo and medullary cancer tests come back clean and the surgeon here can do their surgeries. I like him and trust him and hope eventually maybe he can do one of my surgeries as well. Anyway, this ped endo will be the one who handles the kids' meds after their surgeries. The nice thing is she comes here once a month so that will mean we won't have to constantly travel there.
I think Vin finally took me seriously about the adrenalectomy today when I emailed him a link about it and then a link about adrenal crisis. He now knows exactly what we have to look forward to and exactly how sick I can get if things aren't taken care of right. It's about time is all I can say. I know this has all got to be really hard on him too but I need him to be there for me because if him and these kids aren't it could seriously cost me my life. That's so stinking scary! :( Anyway- I'll update again tomorrow after my appointment. Keeping my fingers crossed.
Thursday, December 09, 2004
Big News!!!
Where to begin?
I joined this medullary cancer board a month or two ago just so I could at least read on there what other people were going through. There are actually some MEN2a patients on there as well. One of them is named Mary and even though I only posted once on the board she has still been emailing me to get updates. VERY sweet lady.
She told me about a study that is being done at Duke University by Dr. Samuel Wells. Dr Wells has 30-40 years of experience working with the RET gene (the mutation we have), MEN, and medullary cancer. He is one of the doctors who designed the test the kids and I took to find out out results about this. VERY knowledgeable man with a list the length of your arm of credentials.
Anyway- I emailed him a few days ago and just gave him a short history and asked if he would please keep me in mind for any future studyings he might do. He almost immediately emailed me back saying I match the criteria for the current study he is doing and he would like to talk to me. I gave him my phone number and the very next day (yesterday) he called me.
The criteria is that you have to have a calcitonin level over 1000 (my last one was over 24,000) and you have to have medullary tumors of 1cm or larger (all mine are 1cm or larger). It is also of course preferred if you have MEN, FMTC, or a genetic reason for having medullary cancer.
The study is on a drug that has been shown to shrink and totally destroy some medullary cancer tumors. They first tried this drug on lung and breast cancer patients with wonderful results and found that the drug basically attacks the RET gene meaning it should do wonders for people like me. The HOPE with this study is to shrink or get rid of tumors and stop the medullary cancer from spreading or coming back. In other words, this is the prelude to what someday could be the cure for my children and their children.
From what I understand the study is 8 weeks long and takes place at Duke University in Durham, NC. The first two weeks you check into the hospital as an inpatient and they do a CT scan on you, bloodwork, EKGs and so on. They start giving you a pill once a day and check your calcitonin levels to see if they are going down (your calcitonin levels only go down if you have tumors removed or cancer cells are reduced). They also do EKGs to check how your heart is doing.
The doctor said that we would work something out so I could see my children (aka all three when/if Vin brings the oldest two and Lil Man daily) and do what I need to do for my family. That was such a relief!
It starts January 28th and as I said I have to stay there for two weeks and then can commute (8 hour drive one way) back and forth the rest of the time. After the first two weeks you have to be there weekly for half a day and stay close for 24 hours so they can draw blood and do an EKG and monitor you. If the drug is working then after the study you would continue on it with routine follow ups. You would also continue to get the drug for free. For being in this study you get the hospital stay for free whenever you are there, the drug is FREE (believe me, you do NOT want to know how much something like this costs!), and they give you a living expense so you and/or family can afford to be close by and travel for all/part of the study.
They have one patient now that is in her third week and is 77 years old. She has shown definate marked progress so that is HUGELY encouraging! The second patient starts next week and then more of us come in January.
That alone was great news but there is more. So on the phone Dr Wells asks me what I have set up in Tampa. I explain to him that they want to do an open adrenalectomy on me so they can remove the adrenal glands, the tumors in my liver, and the one in my intestine. He says I definitely need to have the adrenalectomy before I can be in the study because one of the possible side effects of this drug is hypertension (high blood pressure) and that’s not good in someone with pheos. He tells me that he is NOT trying to change my mind but if I want to be in this study they would of course need me WITH my tumors.
What that would mean is I could get a laproscopic adrenalectomy instead of the open. The laproscopic is MUCH easier. Less surgery time, three small incisions on each side of my back, less recovery time, less time in the hospital, less bleeding….. much better and what is usually done. It would mean that I would only spend a few days in the hospital for the surgery, get out, and be able to move around better after about a week. The thing with the adrenaline would still be the same but I wouldn’t be cut from side to side and have to worry about trying to heal for two to six months. They would leave the tumors alone so that this med has a chance to do it’s work on them. I would still need surgery later on for my throat even if this med works because I have two calcified nodules and I still have the hyperparathyroid problem. It would mean less work on my neck though and that helps too.
Dr Wells said they can do the adrenalectomy there at Duke if I would like (I would still have to pay for it of course) and that I don’t need to do all the scans and tests that Tampa wants me to do. Basically I would just start taking the one medication to shut down my adrenal glands 10 days before the surgery and then show up to have it done.
Let’s see what else? So the plan we are working on at this point and driving up to NC and having my adrenalectomy done VERY soon. Then we drive back, I recover for a week or two (or more depending on when I can get this done), and then drive back up to NC for the study. Rent a hotel room for 2 weeks while a friend or two stay in it with Lil Man and I get all my testing. Go back and forth taking care of Lil Man and then after two weeks come home. Make the trip up there once a week for the routine testing and then come back home. Hopefully by this summer have the thyroid surgery done and then be finished HOPEFULLY with surgeries for a very long time.
Best case scenario of this study is it rids me of tumors, kills any cancer cells, and stops the gene mutation meaning I never get medullary cancer again. It’s a long shot but at this point I will take ANY improvement or even hope for the future. I really don’t care what it does for me. I want it to have a chance to work for my kids.
Where to begin?
I joined this medullary cancer board a month or two ago just so I could at least read on there what other people were going through. There are actually some MEN2a patients on there as well. One of them is named Mary and even though I only posted once on the board she has still been emailing me to get updates. VERY sweet lady.
She told me about a study that is being done at Duke University by Dr. Samuel Wells. Dr Wells has 30-40 years of experience working with the RET gene (the mutation we have), MEN, and medullary cancer. He is one of the doctors who designed the test the kids and I took to find out out results about this. VERY knowledgeable man with a list the length of your arm of credentials.
Anyway- I emailed him a few days ago and just gave him a short history and asked if he would please keep me in mind for any future studyings he might do. He almost immediately emailed me back saying I match the criteria for the current study he is doing and he would like to talk to me. I gave him my phone number and the very next day (yesterday) he called me.
The criteria is that you have to have a calcitonin level over 1000 (my last one was over 24,000) and you have to have medullary tumors of 1cm or larger (all mine are 1cm or larger). It is also of course preferred if you have MEN, FMTC, or a genetic reason for having medullary cancer.
The study is on a drug that has been shown to shrink and totally destroy some medullary cancer tumors. They first tried this drug on lung and breast cancer patients with wonderful results and found that the drug basically attacks the RET gene meaning it should do wonders for people like me. The HOPE with this study is to shrink or get rid of tumors and stop the medullary cancer from spreading or coming back. In other words, this is the prelude to what someday could be the cure for my children and their children.
From what I understand the study is 8 weeks long and takes place at Duke University in Durham, NC. The first two weeks you check into the hospital as an inpatient and they do a CT scan on you, bloodwork, EKGs and so on. They start giving you a pill once a day and check your calcitonin levels to see if they are going down (your calcitonin levels only go down if you have tumors removed or cancer cells are reduced). They also do EKGs to check how your heart is doing.
The doctor said that we would work something out so I could see my children (aka all three when/if Vin brings the oldest two and Lil Man daily) and do what I need to do for my family. That was such a relief!
It starts January 28th and as I said I have to stay there for two weeks and then can commute (8 hour drive one way) back and forth the rest of the time. After the first two weeks you have to be there weekly for half a day and stay close for 24 hours so they can draw blood and do an EKG and monitor you. If the drug is working then after the study you would continue on it with routine follow ups. You would also continue to get the drug for free. For being in this study you get the hospital stay for free whenever you are there, the drug is FREE (believe me, you do NOT want to know how much something like this costs!), and they give you a living expense so you and/or family can afford to be close by and travel for all/part of the study.
They have one patient now that is in her third week and is 77 years old. She has shown definate marked progress so that is HUGELY encouraging! The second patient starts next week and then more of us come in January.
That alone was great news but there is more. So on the phone Dr Wells asks me what I have set up in Tampa. I explain to him that they want to do an open adrenalectomy on me so they can remove the adrenal glands, the tumors in my liver, and the one in my intestine. He says I definitely need to have the adrenalectomy before I can be in the study because one of the possible side effects of this drug is hypertension (high blood pressure) and that’s not good in someone with pheos. He tells me that he is NOT trying to change my mind but if I want to be in this study they would of course need me WITH my tumors.
What that would mean is I could get a laproscopic adrenalectomy instead of the open. The laproscopic is MUCH easier. Less surgery time, three small incisions on each side of my back, less recovery time, less time in the hospital, less bleeding….. much better and what is usually done. It would mean that I would only spend a few days in the hospital for the surgery, get out, and be able to move around better after about a week. The thing with the adrenaline would still be the same but I wouldn’t be cut from side to side and have to worry about trying to heal for two to six months. They would leave the tumors alone so that this med has a chance to do it’s work on them. I would still need surgery later on for my throat even if this med works because I have two calcified nodules and I still have the hyperparathyroid problem. It would mean less work on my neck though and that helps too.
Dr Wells said they can do the adrenalectomy there at Duke if I would like (I would still have to pay for it of course) and that I don’t need to do all the scans and tests that Tampa wants me to do. Basically I would just start taking the one medication to shut down my adrenal glands 10 days before the surgery and then show up to have it done.
Let’s see what else? So the plan we are working on at this point and driving up to NC and having my adrenalectomy done VERY soon. Then we drive back, I recover for a week or two (or more depending on when I can get this done), and then drive back up to NC for the study. Rent a hotel room for 2 weeks while a friend or two stay in it with Lil Man and I get all my testing. Go back and forth taking care of Lil Man and then after two weeks come home. Make the trip up there once a week for the routine testing and then come back home. Hopefully by this summer have the thyroid surgery done and then be finished HOPEFULLY with surgeries for a very long time.
Best case scenario of this study is it rids me of tumors, kills any cancer cells, and stops the gene mutation meaning I never get medullary cancer again. It’s a long shot but at this point I will take ANY improvement or even hope for the future. I really don’t care what it does for me. I want it to have a chance to work for my kids.
Monday, December 06, 2004
Misc Stuff
Figured I needed to update a few things. Let's see- the kids had to get more blood drawn because the day we went the regular lab girl wasn't there so another girl handled the specimens. She was suppose to put the blood in a purple top tube so that it could be sent to one lab and then to another for various tests. Instead she put it in a tube that is frozen meaning only one lab could use it. In other words, she royally screwed up. I was NOT happy to say the least.
The only funny thing is that now that I have gotten people fired TWICE since this all started they are all VERY respectful and about fall all over themselves. I find it funny because if they had just done their jobs in the first place we would all be much happier.
So anyway- the kids' results from the 24 hour urine should be back hopefully this week and the blood tests should be back soon after. I'm afraid to hope but crossing my fingers just the same that they come back negative for the cancer AND the pheos.
I obviously made it just fine to the airport to pick up my MIL. It was much easier than I thought it would be to get there. She was honestly alot of help and alot of support while I was down there. I couldn't tell her enough how thankful I was. Of course, I also have this nervous habit of talking nonstop and proceeded to blab to the poor woman constantly. How embarrassing is that?!! If you ever read this Nancy... I am soooooo sorry. *blush*
So now we wait. Hopefully I'll be able to make the appointments at the end of the month for all the testing but who knows right now. This is one of those times when having family would really be helpful. A bunch of my friends are trying to help and it means the world to me but even they can only do so much. I would never expect them to disrupt their lives for me.
Figured I needed to update a few things. Let's see- the kids had to get more blood drawn because the day we went the regular lab girl wasn't there so another girl handled the specimens. She was suppose to put the blood in a purple top tube so that it could be sent to one lab and then to another for various tests. Instead she put it in a tube that is frozen meaning only one lab could use it. In other words, she royally screwed up. I was NOT happy to say the least.
The only funny thing is that now that I have gotten people fired TWICE since this all started they are all VERY respectful and about fall all over themselves. I find it funny because if they had just done their jobs in the first place we would all be much happier.
So anyway- the kids' results from the 24 hour urine should be back hopefully this week and the blood tests should be back soon after. I'm afraid to hope but crossing my fingers just the same that they come back negative for the cancer AND the pheos.
I obviously made it just fine to the airport to pick up my MIL. It was much easier than I thought it would be to get there. She was honestly alot of help and alot of support while I was down there. I couldn't tell her enough how thankful I was. Of course, I also have this nervous habit of talking nonstop and proceeded to blab to the poor woman constantly. How embarrassing is that?!! If you ever read this Nancy... I am soooooo sorry. *blush*
So now we wait. Hopefully I'll be able to make the appointments at the end of the month for all the testing but who knows right now. This is one of those times when having family would really be helpful. A bunch of my friends are trying to help and it means the world to me but even they can only do so much. I would never expect them to disrupt their lives for me.
Sunday, December 05, 2004
December 02, 2004- Tampa Trip Day Two
Got up and did the same routine as the day before after being up all night with a 2 year old who was running a 102 degree fever. One of his mystery fevers again of course. The fever finally broke around 2am and he slept okay after that. I was awake trying to figure out how to do everything, feeling more and more like I should just cancel all this, and having "bone" pain.
Vin called a few times (after 8am) over a fiasco with Big B at school which stressed me even more. Seems my oldest child was trying to raise the bus window and dislocated his thumb (come to find out it was only "jammed" a little and the nurse wouldn't listen to him).
After breakfast Nancy and Lil Man dropped me off again at Moffitt. Check in was easy this time and I got my pager and sat down to wait. TWO AND A HALF HOURS LATER the pager finally went off and I went back to be weighed, BP taken (103/71), and wait for the doctor. Let me just say that while I was waiting that two and a half hours I had a lady teach me how to do a crochet stitch or two. That’s how bad it was.
About 15 minutes after I sat in the room a med student/resident came in to get my history again. I’m glad that I’m such an oddity that I make a great learning tool and all but after making me wait over two hours do NOT screw with me! I was in no mood to play guinea pig anymore. Put up with him (he really WAS a nice kid just wrong day was all) and then waited to see the surgeon. Dr BC finally came in and started talking to me.
This is where everything changed and my head started to swim. Basically he said he wanted me to understand just how serious and complicated this surgery was so I wouldn’t have any surprises afterwards. He said we are going to remove both my adrenal glands, burn out all the tumors in the liver, and remove the tumor in the small intestine all in one surgery because the more they go in the higher the risk to me is.
For 10 days prior to the surgery I will take a medication that basically shuts down my adrenal glands. If I roll out of bed like a normal person- I will faint. If I get up too fast out of a chair- I will faint. If I bend over and come up too fast- I will faint. Then a day or two before the surgery they will start injecting me with steroids to level off my blood pressure so it will be safe to go in for the surgery.
The surgery itself will take 6-8 hours. After the surgery they will screw with my adrenaline some more for a few days. I will spend about 5 days in the ICU unit because of this. They will cut me from one side of my abdomen, under my ribcage, and to the other side and then open me up and do the surgery that way. LONG way from the three little cuts I thought I was getting in my back. :(
It will take me two to six MONTHS to recover from this he says. I will not be allowed to pick Lil Man up, vacuum, or do anything that has to do with lifting. It takes so long to heal because they have to remove things and cut through so much muscle.
After the surgery, I will be on two medications for my adrenaline for the rest of my life. I will have to wear a medic alert bracelet as well because if I am ever in a stressful situation aka childbirth, car accident, etc then the paramedics at the scene have to give me an injection of adrenaline so my body will deal with it or I can die. Since I will be on medication I won’t be able to have adrenaline rushes like normal people do whenever I’m in a stressful situation so that is why they would have to give me an injection. If I’m under stress here at home I will have to raise my meds in order to deal with it. He says expect to feel like complete hell for at least 6 months.
So that is where we are at right now. No surgery date at this point. The surgeon said it would be sometime after the holidays and with the way they have things set up I’m thinking the middle to end of January IF we go ahead with treatment right now.
Got up and did the same routine as the day before after being up all night with a 2 year old who was running a 102 degree fever. One of his mystery fevers again of course. The fever finally broke around 2am and he slept okay after that. I was awake trying to figure out how to do everything, feeling more and more like I should just cancel all this, and having "bone" pain.
Vin called a few times (after 8am) over a fiasco with Big B at school which stressed me even more. Seems my oldest child was trying to raise the bus window and dislocated his thumb (come to find out it was only "jammed" a little and the nurse wouldn't listen to him).
After breakfast Nancy and Lil Man dropped me off again at Moffitt. Check in was easy this time and I got my pager and sat down to wait. TWO AND A HALF HOURS LATER the pager finally went off and I went back to be weighed, BP taken (103/71), and wait for the doctor. Let me just say that while I was waiting that two and a half hours I had a lady teach me how to do a crochet stitch or two. That’s how bad it was.
About 15 minutes after I sat in the room a med student/resident came in to get my history again. I’m glad that I’m such an oddity that I make a great learning tool and all but after making me wait over two hours do NOT screw with me! I was in no mood to play guinea pig anymore. Put up with him (he really WAS a nice kid just wrong day was all) and then waited to see the surgeon. Dr BC finally came in and started talking to me.
This is where everything changed and my head started to swim. Basically he said he wanted me to understand just how serious and complicated this surgery was so I wouldn’t have any surprises afterwards. He said we are going to remove both my adrenal glands, burn out all the tumors in the liver, and remove the tumor in the small intestine all in one surgery because the more they go in the higher the risk to me is.
For 10 days prior to the surgery I will take a medication that basically shuts down my adrenal glands. If I roll out of bed like a normal person- I will faint. If I get up too fast out of a chair- I will faint. If I bend over and come up too fast- I will faint. Then a day or two before the surgery they will start injecting me with steroids to level off my blood pressure so it will be safe to go in for the surgery.
The surgery itself will take 6-8 hours. After the surgery they will screw with my adrenaline some more for a few days. I will spend about 5 days in the ICU unit because of this. They will cut me from one side of my abdomen, under my ribcage, and to the other side and then open me up and do the surgery that way. LONG way from the three little cuts I thought I was getting in my back. :(
It will take me two to six MONTHS to recover from this he says. I will not be allowed to pick Lil Man up, vacuum, or do anything that has to do with lifting. It takes so long to heal because they have to remove things and cut through so much muscle.
After the surgery, I will be on two medications for my adrenaline for the rest of my life. I will have to wear a medic alert bracelet as well because if I am ever in a stressful situation aka childbirth, car accident, etc then the paramedics at the scene have to give me an injection of adrenaline so my body will deal with it or I can die. Since I will be on medication I won’t be able to have adrenaline rushes like normal people do whenever I’m in a stressful situation so that is why they would have to give me an injection. If I’m under stress here at home I will have to raise my meds in order to deal with it. He says expect to feel like complete hell for at least 6 months.
So that is where we are at right now. No surgery date at this point. The surgeon said it would be sometime after the holidays and with the way they have things set up I’m thinking the middle to end of January IF we go ahead with treatment right now.
Friday, December 03, 2004
December 01, 2004- Tampa Trip Day One
Nancy, Lil Man, and I all got up early, took turns showering, got ready, had breakfast, and then left for the hospital. Aidan honestly seemed happy to have a "grandma" around.
We arrived at Moffitt around 9:40am (my appointment was at 10:15a) and Nancy dropped me off at the entrance so her and Lil Man could go do things while they waited for me. I went up the elevator to the second floor, checked in, fifteen minutes later was registered, and sat down to wait.
While I was waiting I called Nancy (Vin’s mom) to check on Lil Man. He was crying and mad at her because they were at the zoo and she made him sit in a stroller. LOL. He really loved looking at the monkeys though which was good.
I ended up sitting in the waiting room for an hour and a half! I was getting really ticked off and was about to start complaining when my pager went off and I was finally taken back to a room.
Got into an exam room, was weighed, had my BP taken (98/62), answered some questions, and then waited for the doctor. A few minutes later a med student/resident came in and asked me questions. She checked for swollen lymph nodes, examined me, asked more questions, and couldn’t seem to grasp the fact that I had TWO calcitonin tests done and my levels were at 24,000 NOT 16,000. She said that her and Dr LK would be back.
A few minutes later Dr LK came in and let the student/resident give him the rundown on the info she had gathered. Again she said my calcitonin levels were 16,000 and AGAIN I corrected her, she argued with me, and I let her have it! I told her “You DO know that after those first four pages there you have my WHOLE medical file from the beginning of this including ALL my test results and everything I’ve had done INCLUDING the second calcitonin test which was higher than the first". She looked a little upset at me but I was too busy looking at the doctor to see if he understood how ticked off I was getting.
They had my medical records in their hands for a full WEEK before I got there and do you know that not a single solitary person even bothered to look at them? They knew NOTHING about me when I sat down with them. NOTHING! If they had bothered to look at my records they could have scheduled all my testing while I was already there. Instead…… NOTHING!!
Dr LK asked me a question here and there and then showed me two of the CT scan films that showed my adrenal glands. He showed me where the tumors on my glands were and said he feels that those are the pheos. After that he examined me and then told me that they would remove both adrenal glands to get rid of the pheos, then they would cut or burn the tumors in the liver, and then do something about that one in the intestine. Of course, I will also still have to have the thyroid surgery as well.
He then told me that he treats to cure not for a quick fix so he expects me to be cured when we’re all done. From what I understand, you can’t be cured of this because of the MEN2a but it’s nice that he thinks so. He ordered another CT scan, Octreotide scan, and ALL the same bloodwork I’ve had done over again. Of course, our insurance won’t pay for another CT scan nor will they pay for all the bloodwork to be done again. :(
They wanted me to come back December 6, 7, and 8th for everything and a follow up appointment but I just couldn’t do it. There was no way I could have come back this week because Vin doesn’t get paid until Friday for one and there was no one to watch the kids while I was gone ANOTHER three days. I eventually had to settle for them to set up the testing on December 21 and 22 and then a follow up appointment on January 4th.
Nancy, Lil Man, and I all got up early, took turns showering, got ready, had breakfast, and then left for the hospital. Aidan honestly seemed happy to have a "grandma" around.
We arrived at Moffitt around 9:40am (my appointment was at 10:15a) and Nancy dropped me off at the entrance so her and Lil Man could go do things while they waited for me. I went up the elevator to the second floor, checked in, fifteen minutes later was registered, and sat down to wait.
While I was waiting I called Nancy (Vin’s mom) to check on Lil Man. He was crying and mad at her because they were at the zoo and she made him sit in a stroller. LOL. He really loved looking at the monkeys though which was good.
I ended up sitting in the waiting room for an hour and a half! I was getting really ticked off and was about to start complaining when my pager went off and I was finally taken back to a room.
Got into an exam room, was weighed, had my BP taken (98/62), answered some questions, and then waited for the doctor. A few minutes later a med student/resident came in and asked me questions. She checked for swollen lymph nodes, examined me, asked more questions, and couldn’t seem to grasp the fact that I had TWO calcitonin tests done and my levels were at 24,000 NOT 16,000. She said that her and Dr LK would be back.
A few minutes later Dr LK came in and let the student/resident give him the rundown on the info she had gathered. Again she said my calcitonin levels were 16,000 and AGAIN I corrected her, she argued with me, and I let her have it! I told her “You DO know that after those first four pages there you have my WHOLE medical file from the beginning of this including ALL my test results and everything I’ve had done INCLUDING the second calcitonin test which was higher than the first". She looked a little upset at me but I was too busy looking at the doctor to see if he understood how ticked off I was getting.
They had my medical records in their hands for a full WEEK before I got there and do you know that not a single solitary person even bothered to look at them? They knew NOTHING about me when I sat down with them. NOTHING! If they had bothered to look at my records they could have scheduled all my testing while I was already there. Instead…… NOTHING!!
Dr LK asked me a question here and there and then showed me two of the CT scan films that showed my adrenal glands. He showed me where the tumors on my glands were and said he feels that those are the pheos. After that he examined me and then told me that they would remove both adrenal glands to get rid of the pheos, then they would cut or burn the tumors in the liver, and then do something about that one in the intestine. Of course, I will also still have to have the thyroid surgery as well.
He then told me that he treats to cure not for a quick fix so he expects me to be cured when we’re all done. From what I understand, you can’t be cured of this because of the MEN2a but it’s nice that he thinks so. He ordered another CT scan, Octreotide scan, and ALL the same bloodwork I’ve had done over again. Of course, our insurance won’t pay for another CT scan nor will they pay for all the bloodwork to be done again. :(
They wanted me to come back December 6, 7, and 8th for everything and a follow up appointment but I just couldn’t do it. There was no way I could have come back this week because Vin doesn’t get paid until Friday for one and there was no one to watch the kids while I was gone ANOTHER three days. I eventually had to settle for them to set up the testing on December 21 and 22 and then a follow up appointment on January 4th.
Monday, November 29, 2004
Preparing For Tampa
This morning I took the kids' 24 hour urine samples back to the lab so hopefully we will have the results from that in about a week. The blood tests for the medullary cancer should be back by Friday or Monday at the latest I would think. I still haven't heard anything from the Pediatric Endocrinologist that Dr L was suppose to set us up with. I'll have to take her number with me and call tomorrow to find out what is going on. I just don't have the energy left today.
I went by the hospital and got the copy of my CT scans, Pathology slides, and Pathology report so those are ready to go. I tried looking at the CT films but I couldn't tell what was what. Big B kept saying everything was my butt. LOL. They had circled a few things on some of the films which I'm guessing are tumors. I figured out my liver one pretty easily. It was the one with three circled spots on it.
I came home and tried to call the doctor in Tampa to find out if they received my faxed records and if there was a copy of the CT scan report in with it. Of course, no one bothered to call me back and I'm NOT happy about that at all. I don't know if I'm just second guessing things or what but I'm really starting to worry if I made the right choice by choosing to go to Tampa for treatment. By the rude email I got back from the assistant at NIH, I may never be wanted there which I don't get but oh well. I just hope that I didn't burn a bridge there even though I tried very hard to be nice and give them notice. :(
I got snacks and such for the trip tomorrow and just have to finish packing. Lil Man and I will be leaving around 7am so I can get there in time to pick Vin's mom up at the airport around noon or so. No clue what we'll do for the rest of the day but then Wednesday and Thursday are my appointments and hopefully I will come home with a surgery date. I'm hoping they run some tests on me while I'm there. If they don't I may start looking somewhere else AGAIN for treatment. I really don't want to but I need someone reliable for this.
I'm so thankful for Vin's mom right now. Funny... I never thought I would say something like that with the way things were for so many years but the turn around between her and Vin and with her and our family is so wonderful. I may actually soon become one of those women who says "I love my mother in law!". LOL
The lab just called and said that the kids will have to have their blood drawn AGAIN. I wonder what happened this time. Dammit! Last time it was my sample that thawed out and had to be done again and now both of the kids have to go back in. This upsets Sis so bad and is so hard on us. Vin is beyond pissed to say the least.
And when I went to get up to answer the phone my foot was asleep and completely buckled under me. It made an awful cracking sound and I do believe I broke it. OW.
This morning I took the kids' 24 hour urine samples back to the lab so hopefully we will have the results from that in about a week. The blood tests for the medullary cancer should be back by Friday or Monday at the latest I would think. I still haven't heard anything from the Pediatric Endocrinologist that Dr L was suppose to set us up with. I'll have to take her number with me and call tomorrow to find out what is going on. I just don't have the energy left today.
I went by the hospital and got the copy of my CT scans, Pathology slides, and Pathology report so those are ready to go. I tried looking at the CT films but I couldn't tell what was what. Big B kept saying everything was my butt. LOL. They had circled a few things on some of the films which I'm guessing are tumors. I figured out my liver one pretty easily. It was the one with three circled spots on it.
I came home and tried to call the doctor in Tampa to find out if they received my faxed records and if there was a copy of the CT scan report in with it. Of course, no one bothered to call me back and I'm NOT happy about that at all. I don't know if I'm just second guessing things or what but I'm really starting to worry if I made the right choice by choosing to go to Tampa for treatment. By the rude email I got back from the assistant at NIH, I may never be wanted there which I don't get but oh well. I just hope that I didn't burn a bridge there even though I tried very hard to be nice and give them notice. :(
I got snacks and such for the trip tomorrow and just have to finish packing. Lil Man and I will be leaving around 7am so I can get there in time to pick Vin's mom up at the airport around noon or so. No clue what we'll do for the rest of the day but then Wednesday and Thursday are my appointments and hopefully I will come home with a surgery date. I'm hoping they run some tests on me while I'm there. If they don't I may start looking somewhere else AGAIN for treatment. I really don't want to but I need someone reliable for this.
I'm so thankful for Vin's mom right now. Funny... I never thought I would say something like that with the way things were for so many years but the turn around between her and Vin and with her and our family is so wonderful. I may actually soon become one of those women who says "I love my mother in law!". LOL
The lab just called and said that the kids will have to have their blood drawn AGAIN. I wonder what happened this time. Dammit! Last time it was my sample that thawed out and had to be done again and now both of the kids have to go back in. This upsets Sis so bad and is so hard on us. Vin is beyond pissed to say the least.
And when I went to get up to answer the phone my foot was asleep and completely buckled under me. It made an awful cracking sound and I do believe I broke it. OW.
Wednesday, November 24, 2004
Kids' Bloodwork Done and Some Rambling...
I took the kids up to the lab earlier today to get blood drawn. Now the one to two week wait starts until we find out if either of them has cancer or pheos. I'm so scared to hope at this point for any good news. Big B just sat in the chair and let them take the blood like it was no big deal. I was so proud of him. Sis was scared before we even went in. It was rough on her and she freaked out once she got in the chair. She wouldn't turn her head so she wasn't watching them and she just started crying and whimpering before they even started. I just wanted to pull her out of that chair and beg them to stick me instead. I know I can't and it wouldn't matter if I did but this isn't how things were suppose to be. :( She was okay afterwards and we got the kids some shakes on the way home. I figured it was the least Vin and I could do for them now.
Rambling- I just don't know how much more we're suppose to take before I completely lose it. I'm thankful for whatever it is that has helped me make it through the last two months without having a breakdown but I wonder sometimes if the "storm" is coming still. A friend of mine said that this probably IS normal for me as far as my reactions go. She said that with all the abuse I went through throughout my life that my ability to detach from the pain has just carried over to this. I guess that makes sense. I guess I'm even thankful in part. Hell, the doctor cried more yesterday over the kids' results than I did. :(
I hurt and I feel like enough is enough. I told Vin last night that it would be different if I had lived a charmed life and then suddenly been handed this. But man, why has my whole life had to suck so bad and then get handed this too? This is just unreal! I'm not doing the poor me thing either. Anyone who knows me knows how bad my life has been from the time I was little to a few years ago. I can't f'ing believe I made it through all that hellish nightmare just to end up having a damn genetic mutation that causes cancer, adrenal tumors, and all kinds of crap!! And to actually HAVE all three things it causes AND two of my children to have it! It's just unreal! I mean what the hell man?!
The kids are taking it really well. I don't know if they will continue to once things start for them but I'm very proud of them. Vin said that he thought the hardest thing he had ever had to do was tell his grandmother last month that her son had died (for those who don't know, my husband's father died in a drowning accident on October 28th) but he says yesterday topped that. Having to tell the kids the news was the hardest thing he's ever done according to him. For me, I know the hardest parts are still to come. This is only the beginning. :(
Anywho- I decided not to take the Loratab today because I figured the pain from the kidney blockage most likely wasn't all that bad anymore. Man, did I find out just how much they really WERE helping! I've been in some pain the whole time because I can only take half a Loratab (I get very sick if I take a whole one) but they definately took the edge off. I still haven't taken one today. I guess some sick part of me feels like I deserve to be in pain today. I guess somewhere in my mind I figure my kids had to feel pain today so I should too. I don't know to be honest.
I took the kids up to the lab earlier today to get blood drawn. Now the one to two week wait starts until we find out if either of them has cancer or pheos. I'm so scared to hope at this point for any good news. Big B just sat in the chair and let them take the blood like it was no big deal. I was so proud of him. Sis was scared before we even went in. It was rough on her and she freaked out once she got in the chair. She wouldn't turn her head so she wasn't watching them and she just started crying and whimpering before they even started. I just wanted to pull her out of that chair and beg them to stick me instead. I know I can't and it wouldn't matter if I did but this isn't how things were suppose to be. :( She was okay afterwards and we got the kids some shakes on the way home. I figured it was the least Vin and I could do for them now.
Rambling- I just don't know how much more we're suppose to take before I completely lose it. I'm thankful for whatever it is that has helped me make it through the last two months without having a breakdown but I wonder sometimes if the "storm" is coming still. A friend of mine said that this probably IS normal for me as far as my reactions go. She said that with all the abuse I went through throughout my life that my ability to detach from the pain has just carried over to this. I guess that makes sense. I guess I'm even thankful in part. Hell, the doctor cried more yesterday over the kids' results than I did. :(
I hurt and I feel like enough is enough. I told Vin last night that it would be different if I had lived a charmed life and then suddenly been handed this. But man, why has my whole life had to suck so bad and then get handed this too? This is just unreal! I'm not doing the poor me thing either. Anyone who knows me knows how bad my life has been from the time I was little to a few years ago. I can't f'ing believe I made it through all that hellish nightmare just to end up having a damn genetic mutation that causes cancer, adrenal tumors, and all kinds of crap!! And to actually HAVE all three things it causes AND two of my children to have it! It's just unreal! I mean what the hell man?!
The kids are taking it really well. I don't know if they will continue to once things start for them but I'm very proud of them. Vin said that he thought the hardest thing he had ever had to do was tell his grandmother last month that her son had died (for those who don't know, my husband's father died in a drowning accident on October 28th) but he says yesterday topped that. Having to tell the kids the news was the hardest thing he's ever done according to him. For me, I know the hardest parts are still to come. This is only the beginning. :(
Anywho- I decided not to take the Loratab today because I figured the pain from the kidney blockage most likely wasn't all that bad anymore. Man, did I find out just how much they really WERE helping! I've been in some pain the whole time because I can only take half a Loratab (I get very sick if I take a whole one) but they definately took the edge off. I still haven't taken one today. I guess some sick part of me feels like I deserve to be in pain today. I guess somewhere in my mind I figure my kids had to feel pain today so I should too. I don't know to be honest.
Tuesday, November 23, 2004
November 23, 2004- Appointment & Kids' Results
Well at my appointment today Dr L went over my ER visit and let me know that the blockage in my right kidney doesn't seem to be a stone and the infection is very mild which means I shouldn't have the kind of pain I'm having. So we're thinking it's cancer or pheo related. Ugh, more problems. I'm still taking my meds for now until they are done.
She gave me a copy of my medical records and also went ahead and faxed a copy to Dr LK in Tampa. His secretary had left a message earlier saying that basically they wouldn't do any tests this visit because they didn't have my medical records ahead of time and I would have to come back AGAIN the next week. Now, they shouldn't have any problem deciding what tests to run on me since they have my records and hopefully save me a trip back down.
Dr L also doesn't agree with my decision to get my pheo surgery in Tampa simply because it is going to be VERY expensive...WAY expensive and she hates us having those high bills but she is behind me no matter what choice I make.
Then she asked me to please have a seat. Then she started to cry. I told her "This can't be good" and through the tears she told me that the good news was that Lil Man's test for MEN2A came back negative. So he doesn't have it, he never will, and he will never have to go through any of this. The bad news was that BOTH Big B and Sis do have MEN2A. Both of my children now have this awful mutation that will effect the rest of their lives. Tomorrow they have to have blood drawn at the lab and then on Sunday they will have to do the 24 hour urine test. What we have to find out now is if either of them has medullary cancer or pheochromocytomas. If they do then this all starts again. IF they don't then they will just get the thyroidectomies and will NEVER have to worry about medullary cancer. The pheos will be something they will have to be checked for for the rest of their lives but the cancer at least will be no threat.
I'll be honest, I won't even allow myself to even consider that my kids don't have cancer or pheos. I won't set any of us up with any kind of hope like that. I told them it's highly unlikely that they will have cancer or pheos but in my heart I'm already trying to ready myself for it. I won't hope for anything at this point and fall on my knees with heartfelt thanks if I am finally lucky enough to have my children not be dealt this blow as well.
Both of the kids took it okay. Sis is scared because she hates giving blood and the whole thought of surgery is scary obviously but I told her I will be there for her through all of it. Big B basically made jokes about the whole thing so I honestly don't know how he feels about it. Neither one of them held it against Lil Man though that he doesn't have it and Sis even said "I'm glad Lil Man doesn't have it".
So tomorrow they have blood drawn.
Sunday they do the 24 hour urine test which I drop off on Monday.
Tuesday (November 30th) thru Friday (December 3rd), Lil Man and I will be gone to Tampa for my appointments.
The kids should have an appointment in Tallahassee, Florida with a Pediatric Endocrinologist the week after that to start discussing their surgeries. I'm hoping to have the surgeries done during their Christmas vacation so they dont have to miss any school.
Possibly the middle of December I will have my first pheo surgery.
The next week I will have a follow up with my doctor for me.
Then the last week of December hopefully surgeries for the kids.
For everyone else the holiday season has begun. For us it is already over because life is going to be going full force whether we like it or not.
Well at my appointment today Dr L went over my ER visit and let me know that the blockage in my right kidney doesn't seem to be a stone and the infection is very mild which means I shouldn't have the kind of pain I'm having. So we're thinking it's cancer or pheo related. Ugh, more problems. I'm still taking my meds for now until they are done.
She gave me a copy of my medical records and also went ahead and faxed a copy to Dr LK in Tampa. His secretary had left a message earlier saying that basically they wouldn't do any tests this visit because they didn't have my medical records ahead of time and I would have to come back AGAIN the next week. Now, they shouldn't have any problem deciding what tests to run on me since they have my records and hopefully save me a trip back down.
Dr L also doesn't agree with my decision to get my pheo surgery in Tampa simply because it is going to be VERY expensive...WAY expensive and she hates us having those high bills but she is behind me no matter what choice I make.
Then she asked me to please have a seat. Then she started to cry. I told her "This can't be good" and through the tears she told me that the good news was that Lil Man's test for MEN2A came back negative. So he doesn't have it, he never will, and he will never have to go through any of this. The bad news was that BOTH Big B and Sis do have MEN2A. Both of my children now have this awful mutation that will effect the rest of their lives. Tomorrow they have to have blood drawn at the lab and then on Sunday they will have to do the 24 hour urine test. What we have to find out now is if either of them has medullary cancer or pheochromocytomas. If they do then this all starts again. IF they don't then they will just get the thyroidectomies and will NEVER have to worry about medullary cancer. The pheos will be something they will have to be checked for for the rest of their lives but the cancer at least will be no threat.
I'll be honest, I won't even allow myself to even consider that my kids don't have cancer or pheos. I won't set any of us up with any kind of hope like that. I told them it's highly unlikely that they will have cancer or pheos but in my heart I'm already trying to ready myself for it. I won't hope for anything at this point and fall on my knees with heartfelt thanks if I am finally lucky enough to have my children not be dealt this blow as well.
Both of the kids took it okay. Sis is scared because she hates giving blood and the whole thought of surgery is scary obviously but I told her I will be there for her through all of it. Big B basically made jokes about the whole thing so I honestly don't know how he feels about it. Neither one of them held it against Lil Man though that he doesn't have it and Sis even said "I'm glad Lil Man doesn't have it".
So tomorrow they have blood drawn.
Sunday they do the 24 hour urine test which I drop off on Monday.
Tuesday (November 30th) thru Friday (December 3rd), Lil Man and I will be gone to Tampa for my appointments.
The kids should have an appointment in Tallahassee, Florida with a Pediatric Endocrinologist the week after that to start discussing their surgeries. I'm hoping to have the surgeries done during their Christmas vacation so they dont have to miss any school.
Possibly the middle of December I will have my first pheo surgery.
The next week I will have a follow up with my doctor for me.
Then the last week of December hopefully surgeries for the kids.
For everyone else the holiday season has begun. For us it is already over because life is going to be going full force whether we like it or not.
Monday, November 22, 2004
Updates To November 22nd
About three weeks ago I started having some pain in my kidney area but me being me I pretty much brushed it off and ignored it. Last Sunday night (November 14th) I started having really bad right flank pain and feeling like I was being kicked in my right kidney by someone wearing boots. It wasn't too bad at first but the next day I called my doctor to see if I should worry because of all this cancer stuff. Well I left two messages on Monday, one on Tuesday, one on Wednesday, didn't bother on Thursday, and left two more on Friday. Never got a single call back from my doctor or her nurse all week. I was starting to wonder why I was being ignored and just wanted to know if I should worry about this pain that was getting worse with each day and maybe get the kids' test results.
So Friday afternoon I emailed my doctor and basically just asked what the heck was up and I just wanted to know if I should worry or not. Saturday she emailed me back and told me that it could be a number of things and to come in first thing on Monday to get some testing done. She also told me she never got any of my messages and she was horrified. She then gave me her phone number, cell number, and pager number and told me that if she doesn't call me back by 4pm on any day I call to call her on one of her lines. I really appreciated that.
Yesterday (Sunday) I couldn't take the pain anymore and I can take ALOT of pain but I just couldn't do it anymore. I had been fighting this horrid pain for a week and I was just drained so I called the doctor and asked her what I should do. She told me to go straight to the ER and called ahead so I didn't have to wait to get back there. Well that part was nice but the following FIVE hours was a bunch of BS to say the least.
The first hour (4:30p-5:30p) the doctor said what they would do and they had me pee in a cup. No one came in for the rest of the hour to see if I was okay.
The second hour (5:30p-6:30p) they took some blood and took the pee in the cup after I told them to. No one came back again for the rest of the hour.
The third hour (6:30p-7:30p) a new nurse came in and said she was my nurse, left, and I had a 5 minute ultrasound done.
No one came back for TWO hours. Not to check on me or anything. I had to lay there in pain for 5 hours without a single offer of anything at all. Finally I asked to use a phone to call my husband because I had left him with the kids and didn't expect to be stuck in the ER for 5 hours without knowing what was going on. Yes, I said it in a crappy tone too. I was beyond ticked off and Vin had to talk me into not walking out and going home. LOL. After I got off the phone with him I hear over the loudspeaker is "Dr Q, Dr L is on the phone and wants to speak with you".
Five minutes later I FINALLY saw the doctor who told me that I have an obstruction in my right kidney and the beginning of a UTI. Didn't tell me what is obstructing my kidney but I'm figuring most likely a kidney stone as those are one of the lovely things that comes along with this MEN2A. No clue what I'm suppose to do if it doesn't go away or pass though. Guess I'll find out tomorrow at my appointment. The ER doc also said that had I not gotten treatment for this it would have turned into an inflammation in my kidney and that can lead to death. Niceeeeeeeeeeeee.
Prescribing me an antibiotic was a royal pain as well because I'm supposedly allergic to the whole penicillin family and a whole other family of normal antibiotics. Finally I was prescribed Cipro for the infection and stuff and Loratab for the pain because I'm not allowed a whole lot I guess. Loratab makes me throw up and feel very sick so I'm only taking half a pill meaning that the pain is dulled but I can obviously still feel it. *sigh*
So it has begun. This is the start of many complications, appointments, trips to the ER, and surgeries. Not how I thought my life would be. Tomorrow I have an appointment with my endo to go over some other test results I had, get a copy of my records, and hopefully get the kids' test results. They're going to try to have the lab fax them the results so we know tomorrow. I also have to go tomorrow to get copies of my CT scan films to take to Tampa with me. Next Monday I have to get the slides from Pathology on my biopsy to take as well and then Tuesday afternoon Lil Man and I head out to Tampa to meet up with Vin's mom and chill out before my appointments start on Wednesday (December 1). So I won't be around from the 30th through probably the 3rd or 4th.
I will update again tomorrow after my appointment. Keep your fingers crossed that I know my childrens' fates tomorrow.
About three weeks ago I started having some pain in my kidney area but me being me I pretty much brushed it off and ignored it. Last Sunday night (November 14th) I started having really bad right flank pain and feeling like I was being kicked in my right kidney by someone wearing boots. It wasn't too bad at first but the next day I called my doctor to see if I should worry because of all this cancer stuff. Well I left two messages on Monday, one on Tuesday, one on Wednesday, didn't bother on Thursday, and left two more on Friday. Never got a single call back from my doctor or her nurse all week. I was starting to wonder why I was being ignored and just wanted to know if I should worry about this pain that was getting worse with each day and maybe get the kids' test results.
So Friday afternoon I emailed my doctor and basically just asked what the heck was up and I just wanted to know if I should worry or not. Saturday she emailed me back and told me that it could be a number of things and to come in first thing on Monday to get some testing done. She also told me she never got any of my messages and she was horrified. She then gave me her phone number, cell number, and pager number and told me that if she doesn't call me back by 4pm on any day I call to call her on one of her lines. I really appreciated that.
Yesterday (Sunday) I couldn't take the pain anymore and I can take ALOT of pain but I just couldn't do it anymore. I had been fighting this horrid pain for a week and I was just drained so I called the doctor and asked her what I should do. She told me to go straight to the ER and called ahead so I didn't have to wait to get back there. Well that part was nice but the following FIVE hours was a bunch of BS to say the least.
The first hour (4:30p-5:30p) the doctor said what they would do and they had me pee in a cup. No one came in for the rest of the hour to see if I was okay.
The second hour (5:30p-6:30p) they took some blood and took the pee in the cup after I told them to. No one came back again for the rest of the hour.
The third hour (6:30p-7:30p) a new nurse came in and said she was my nurse, left, and I had a 5 minute ultrasound done.
No one came back for TWO hours. Not to check on me or anything. I had to lay there in pain for 5 hours without a single offer of anything at all. Finally I asked to use a phone to call my husband because I had left him with the kids and didn't expect to be stuck in the ER for 5 hours without knowing what was going on. Yes, I said it in a crappy tone too. I was beyond ticked off and Vin had to talk me into not walking out and going home. LOL. After I got off the phone with him I hear over the loudspeaker is "Dr Q, Dr L is on the phone and wants to speak with you".
Five minutes later I FINALLY saw the doctor who told me that I have an obstruction in my right kidney and the beginning of a UTI. Didn't tell me what is obstructing my kidney but I'm figuring most likely a kidney stone as those are one of the lovely things that comes along with this MEN2A. No clue what I'm suppose to do if it doesn't go away or pass though. Guess I'll find out tomorrow at my appointment. The ER doc also said that had I not gotten treatment for this it would have turned into an inflammation in my kidney and that can lead to death. Niceeeeeeeeeeeee.
Prescribing me an antibiotic was a royal pain as well because I'm supposedly allergic to the whole penicillin family and a whole other family of normal antibiotics. Finally I was prescribed Cipro for the infection and stuff and Loratab for the pain because I'm not allowed a whole lot I guess. Loratab makes me throw up and feel very sick so I'm only taking half a pill meaning that the pain is dulled but I can obviously still feel it. *sigh*
So it has begun. This is the start of many complications, appointments, trips to the ER, and surgeries. Not how I thought my life would be. Tomorrow I have an appointment with my endo to go over some other test results I had, get a copy of my records, and hopefully get the kids' test results. They're going to try to have the lab fax them the results so we know tomorrow. I also have to go tomorrow to get copies of my CT scan films to take to Tampa with me. Next Monday I have to get the slides from Pathology on my biopsy to take as well and then Tuesday afternoon Lil Man and I head out to Tampa to meet up with Vin's mom and chill out before my appointments start on Wednesday (December 1). So I won't be around from the 30th through probably the 3rd or 4th.
I will update again tomorrow after my appointment. Keep your fingers crossed that I know my childrens' fates tomorrow.
Tuesday, November 09, 2004
November 9th Update
On November 4th I took all three kids in to get their blood drawn for the MEN2A test. I still hurt from that and I can still hear Lil Man cry "Thomas Help Me" in my head as they drew his blood. I think that will stay with me always as will the look in Sissy's eyes as the needle went in.
We should have the results back in about 3 weeks so just in time for Lil Man's birthday. If any or all of them comes back testing positive with MEN2A then they will have to have a total thyroidectomy and be on thyroid replacement hormones for the rest of their lives. They will also have to seriously consider whether or not they want to have children since this is genetic.
As for me, on November 3rd NIH called and wants me there on November 28th for a week of testing. I have not cancelled my appointment with them at this point but I do plan on doing so. I guess they just gave me too much time to think and look into alternatives. The great things are that the treatment is free and they receive a ton of government funding and are one of the tops in research.
The bad things are they are supposedly slow with getting test results and records to you (that is based on two people I've talked to who went there), you will have to spend anywhere from 4 days to two weeks away from home several times during the treatment and protocol, if you are an outpatient you have to pay around $80 or more for each night of a hotel room or if your family is with you and you are inpatient then for them to stay in a hotel, and if you can't get a Mercy Flight then you have flight costs as well. I'm sure in the end still cheaper than paying a regular doctor's bills but still... it adds up. Also in there is the fact that it IS free care with strict protocol rules that must be followed so you honestly have to do what they say when they say or I'm sure you are out (not that they say that meanly because I hear they are very nice). I totally understand this...I really do.
Vin and I have talked about it and this just isn't what we want for my care. Too many things on too many levels just aren't how we want to go. I'm not saying I won't want to join a future protocol by them or anything because I very well might but I don't want my care focused through or by them. So we are turning down NIH at this point. I hope to use them in the future when they have clinical trials and such but I don't want them for my actual long term care.
The day after I got the call from NIH, I pulled myself up, wiped the tears, and decided that I needed to look into EVERYTHING I could for this. I felt I didn't have a choice but to go to NIH because it's free and we can't afford tons of hospital bills. Vin was in Massachusetts while all of this was going on and I really didn't want to bother him with it. The day I got the call he said that I had to go to NIH. I cried and told him I know it just didn't feel right and I hated it but I did know I had to go because it's free and means less bills. He told me not to go because it was free...go because I felt it was the best care there was. I told him I couldn't go for that reason because I felt there was other care closer to home that was just as good. The next day he was telling me that if there was something I felt was better for me then to do it and NOT base my treatment on money. He said me being well was what is important not bills.
So I called the appointment line at H. Lee Moffitt in Tampa, Florida to try to get an appointment with Dr. LK who is an endo specialist who deals with MEN, MTC, and pheos. They said the soonest I could get in would be January 19th. I told them thank you but that was too late and hung up. I was heartbroke to say the least. I sat down, cried a little more, and then decided to try emailing him since I had his email address. I emailed him asking if he knew of a pheo surgeon since I couldn't get in with him.
After I sent the email I called and got the number for a pheo surgeon my friend, Christine, had mentioned named Dr.R. His office handed me off to another surgeon's office and they called me back about an hour later. The lady was really nice, took all my info, and made an appointment for me with Dr MA (chairman of surgery at Tampa General) for November 9th. I hung up feeling better knowing that at least I would be able to get a pheo surgeon close by home and have the surgery in Tampa.
Another hour later Dr LK emailed me back and said that yes he deals with MEN, MTC, and pheos and would be happy to see me. I emailed HIM back and told him thank you but I had tried to get an appointment and they said they couldn't get me in before January. I said I'm due at NIH on November 28th so that is too late for me but thank you again and I look forward to hopefully going through him in the future.
Fifteen minutes later I got another email telling me he would fit me in on the Wednesday after Thanksgiving AND make sure I had an appointment with the pheo surgeon the very next day so I could have my surgery in December. I again cried but for a totally different reason this time.
I told Vin the news, talked to him some more, went through feeling guilty about running up bills when we were being offered free care, and then listened to the four people who were telling me that this was what I should do.
So I called this past Monday and cancelled my appointment with Dr. MA and on Tuesday and set up an appointment with Dr. LK for December 1st and they set me up an appointment with Dr WBC (the pheo surgeon) for December 2nd. I will take my CT scan films, my pathology films, and my medical records with me to the appointment with Dr K and then he will most likely dictate my visit with him right then and there so I can take it to my appointment with Dr C the next day. By the time I leave Dr C's office I should have a surgery date for December sometime to get the pheo/pheos out. Once those are gone then I can get the total thyroidectomy, lymph node dissection, and parathyroidectomy done.
I feel really good about this minus the money thing. That still bothers me and I still feel horrible about it but I just didn't like the feelings I got with having my care handled by someone so far away. This way care is close by if something happens and we're in control of it as well.
So the rundown is......
Kids' test results should be back in two weeks.
I have an appointment with Dr. LK (endo specialist) at H. Lee Moffitt on December 1st.
I have an appointment with Dr. BC (pheo surgeon) at H. Lee Moffitt on December 2nd.
After the pheo is out and everything in my neck is out then I guess they will decide whether or not to operate on what's left. If the spots in my liver are deep IN my liver then they most likely won't be removed and we'll just have to do what we can to slow their growth. The one in the intestine I don't know if they will remove or not. I guess we'll cross that bridge when we get to it. I'm never going to be cancer free so my main goal right now is just to take out what we can and keep the rest to a minimum so I can enjoy my kids.
On November 4th I took all three kids in to get their blood drawn for the MEN2A test. I still hurt from that and I can still hear Lil Man cry "Thomas Help Me" in my head as they drew his blood. I think that will stay with me always as will the look in Sissy's eyes as the needle went in.
We should have the results back in about 3 weeks so just in time for Lil Man's birthday. If any or all of them comes back testing positive with MEN2A then they will have to have a total thyroidectomy and be on thyroid replacement hormones for the rest of their lives. They will also have to seriously consider whether or not they want to have children since this is genetic.
As for me, on November 3rd NIH called and wants me there on November 28th for a week of testing. I have not cancelled my appointment with them at this point but I do plan on doing so. I guess they just gave me too much time to think and look into alternatives. The great things are that the treatment is free and they receive a ton of government funding and are one of the tops in research.
The bad things are they are supposedly slow with getting test results and records to you (that is based on two people I've talked to who went there), you will have to spend anywhere from 4 days to two weeks away from home several times during the treatment and protocol, if you are an outpatient you have to pay around $80 or more for each night of a hotel room or if your family is with you and you are inpatient then for them to stay in a hotel, and if you can't get a Mercy Flight then you have flight costs as well. I'm sure in the end still cheaper than paying a regular doctor's bills but still... it adds up. Also in there is the fact that it IS free care with strict protocol rules that must be followed so you honestly have to do what they say when they say or I'm sure you are out (not that they say that meanly because I hear they are very nice). I totally understand this...I really do.
Vin and I have talked about it and this just isn't what we want for my care. Too many things on too many levels just aren't how we want to go. I'm not saying I won't want to join a future protocol by them or anything because I very well might but I don't want my care focused through or by them. So we are turning down NIH at this point. I hope to use them in the future when they have clinical trials and such but I don't want them for my actual long term care.
The day after I got the call from NIH, I pulled myself up, wiped the tears, and decided that I needed to look into EVERYTHING I could for this. I felt I didn't have a choice but to go to NIH because it's free and we can't afford tons of hospital bills. Vin was in Massachusetts while all of this was going on and I really didn't want to bother him with it. The day I got the call he said that I had to go to NIH. I cried and told him I know it just didn't feel right and I hated it but I did know I had to go because it's free and means less bills. He told me not to go because it was free...go because I felt it was the best care there was. I told him I couldn't go for that reason because I felt there was other care closer to home that was just as good. The next day he was telling me that if there was something I felt was better for me then to do it and NOT base my treatment on money. He said me being well was what is important not bills.
So I called the appointment line at H. Lee Moffitt in Tampa, Florida to try to get an appointment with Dr. LK who is an endo specialist who deals with MEN, MTC, and pheos. They said the soonest I could get in would be January 19th. I told them thank you but that was too late and hung up. I was heartbroke to say the least. I sat down, cried a little more, and then decided to try emailing him since I had his email address. I emailed him asking if he knew of a pheo surgeon since I couldn't get in with him.
After I sent the email I called and got the number for a pheo surgeon my friend, Christine, had mentioned named Dr.R. His office handed me off to another surgeon's office and they called me back about an hour later. The lady was really nice, took all my info, and made an appointment for me with Dr MA (chairman of surgery at Tampa General) for November 9th. I hung up feeling better knowing that at least I would be able to get a pheo surgeon close by home and have the surgery in Tampa.
Another hour later Dr LK emailed me back and said that yes he deals with MEN, MTC, and pheos and would be happy to see me. I emailed HIM back and told him thank you but I had tried to get an appointment and they said they couldn't get me in before January. I said I'm due at NIH on November 28th so that is too late for me but thank you again and I look forward to hopefully going through him in the future.
Fifteen minutes later I got another email telling me he would fit me in on the Wednesday after Thanksgiving AND make sure I had an appointment with the pheo surgeon the very next day so I could have my surgery in December. I again cried but for a totally different reason this time.
I told Vin the news, talked to him some more, went through feeling guilty about running up bills when we were being offered free care, and then listened to the four people who were telling me that this was what I should do.
So I called this past Monday and cancelled my appointment with Dr. MA and on Tuesday and set up an appointment with Dr. LK for December 1st and they set me up an appointment with Dr WBC (the pheo surgeon) for December 2nd. I will take my CT scan films, my pathology films, and my medical records with me to the appointment with Dr K and then he will most likely dictate my visit with him right then and there so I can take it to my appointment with Dr C the next day. By the time I leave Dr C's office I should have a surgery date for December sometime to get the pheo/pheos out. Once those are gone then I can get the total thyroidectomy, lymph node dissection, and parathyroidectomy done.
I feel really good about this minus the money thing. That still bothers me and I still feel horrible about it but I just didn't like the feelings I got with having my care handled by someone so far away. This way care is close by if something happens and we're in control of it as well.
So the rundown is......
Kids' test results should be back in two weeks.
I have an appointment with Dr. LK (endo specialist) at H. Lee Moffitt on December 1st.
I have an appointment with Dr. BC (pheo surgeon) at H. Lee Moffitt on December 2nd.
After the pheo is out and everything in my neck is out then I guess they will decide whether or not to operate on what's left. If the spots in my liver are deep IN my liver then they most likely won't be removed and we'll just have to do what we can to slow their growth. The one in the intestine I don't know if they will remove or not. I guess we'll cross that bridge when we get to it. I'm never going to be cancer free so my main goal right now is just to take out what we can and keep the rest to a minimum so I can enjoy my kids.
Wednesday, October 20, 2004
October 15th- 19th Updates
October 15- I got a call from MD Anderson telling me I have an appointment on November 3rd at 9am. To be honest, I was quite shocked because the last I heard my endo (Dr L) was just talking to them and trying to refer me. I never got to say whether or not I even wanted to go to MD Anderson.
So anyway- the lady on the phone informs me that I have an appointment, tells me when to be there, where to go, and then goes "How will you be traveling?". I told her I had no clue because this was the first I had heard of this. Then she asked me the same question again. I was NOT happy with these people at this point and was getting quite perturbed. So I asked her if there was a patient rep I could talk to about setting up a place for my family to stay and so on. She tells me "We do have hotels in Houston.". Well DUHHHH you think??
She then proceeds to inform me that if my insurance won't cover it then I need to bring $2500 with me for the appointment. So I informed her back that if my insurance didn't cover it I would NOT be there... period! She again informed me that getting an appointment this quickly was a privilege. I told her I don't care what kind of a privilege it is suppose to be, I don't have $2500 laying around for no reason other than as a deposit on a bunch of tests I've already had done before. She then tells me that the money is just for the doctor consultation not any tests. OH MY GOODNESS!!! So I took down all the info and left it at that.
Called my doctor to find out if she had received my email with the links to endocrinologists who had dealt with this before and what her opinion was on me going to the Mayo Clinic. She said the Mayo Clinic in Jacksonville really doesn't deal with things like this because I am VERY rare. She gave me the results of some more of my tests and it seems more has been added to my diagnosis.
I have MEN2A (the RET gene test hasn't come back yet but there is no doubt it will come back positive at this point) complicated by medullary thyroid cancer, pheochromocytomas, and hyperparathyroidism.
I had to ask her just how bad the spots they found were and where exactly they are. The Dr told me that I have one most likely two tumors in my liver that are 1.0-1.5cm, one on my left adrenal gland that is 1.5cm, one by my right adrenal gland that is the same size, and a 3.0cm tumor in my small bowel. She then told me that she had felt some in my lymph nodes in my neck so she already knew they were there plus they are in my parathyroid as well. In other words, I have cancer in my thyroid, my parathyroid, my lymph nodes in my neck, tumors in my liver, on each adrenal gland, and one in my small bowel. I asked her if I had any in my heart or lungs, asked to make sure I didn't have them in my stomach, and then took a deep breath.
I told her that this was good news. I don't think she got it at first. We talked about alternatives to MD Anderson and specialists a little closer. She kept telling me that she feels I should go to MD and so on. I feel that we need to look at ALL our choices and I need to think about my family as well.
October 18th- Monday- I did a bunch of research online over the weekend and on Monday on my own. A place called NIH (National Institute of Health) in Bethesda, Maryland was mentioned several times as well as a Dr Pacak who does a lot of studies on pheos and is considered one of the TOP pheo experts in the country. Found everything I could about my condition, talked to my friend Christine on Sunday night who’s mother has a lot of the same things I have, a lady from the Pheo Support board named Carol called me later in the evening, and earlier MD Anderson called me to let me know that unless I had the $2500 in hand they could not take me. Honestly? I already knew that and it just made me mad to think that they are that stuck on themselves. If any of my children ever wants to be a doctor I hope they have a heart too. After that I called and made an appointment with my endo doctor so we could go over my results.
October 19th- Went to my appointment with the endo (Dr L) and gave her all the contacts I had found for Dr. Pacak, his assistant, another doctor at NIH, all their email addresses, a specialist at H. Lee Moffitt named Dr. Larry Kvols (who my friend Christine’s mother uses), a link to a study that is being done on pheos, any questions I have, and so on. She was very impressed!
She said she couldn’t believe she didn’t think of NIH first because she is from Maryland and knows Dr. Pacak personally. We talked for awhile and I told her what I wanted for my care. I also asked her if this is considered terminal cancer and to please be honest. She told me no that it isn’t at this point but that another form of thyroid cancer is and so I told her I’m happy I don’t have that then. I asked her to explain some of my tests to me, what the things they tested for do, what made her think I have a pheo (test results from two tests, my symptoms I’ve had, and the spots on the CT scan on my adrenal glands), and asked her about getting the kids tested.
At this time she has sent an email and left a message with Dr Pacak’s assistant Karen Adams. We are going to try to get me in at NIH as well as get the kids’ testing done there for the MEN2a gene because they are at the forefront on technology, they love cases like mine because I am considered highly rare-out of 25,000 people each year less than 1,000 get medullary thyroid carcinoma- but it gets even more rare because MEN2a is rare. If you have MEN2a, which is a gene mutation, then you have high chances of having the medullary cancer, the pheochromocytomas, adrenal tumors, and hyperparathyroidism plus a few other things. Around 25 percent of MEN2a patients develop all three (MTC, pheos, AND parathyroid tumors). Of course, I have ALL of them. Hey again, why do it halfbutted when you can just do it right eh?
Anyway- the right people at NIH have been contacted thanks to those wonderful people on the pheo board, we have a plan in place, we have a backup doctor in mind, I have information on free flights through Angel Flights and Mercy Medical Flights, AND we are staying open to the octreotide therapy clinical trials for use as well (it’s a drug they are researching that stops the growth of tumors. Doesn’t get rid of them but it does stop them).
Everything on me to this point is operable. Depending on where the tumors in the liver are, the liver can be shaved and it grows back. My adrenal glands are going to be removed the endo says and I will have to take a steroid supplement for the rest of my life. The one in my small bowel I’m sure can be removed as well and hey, they can even keep some since a person has over 15 feet of it.
We’re not sure where exactly the pheos are at this point but if/when we find them they will be the first things to go. THEY are the dangerous thing because they are what can cause me to have a heart attack while in surgery. So we go after them first. My total thyroid will be removed and I will have to be on thyroid hormone replacement pills for the rest of my life. My parathyroid glands will be removed and I honestly don’t know if they will even try to save any. I will have to be on calcium supplements for the rest of my life though if they do take them all. The lymph nodes in my neck will be removed and hopefully those are the only ones this has spread to. There are none at present in my heart, lungs, or brain. So they have a chance of removing everything.
The bad news is that because of this genetic mutation the MTC and pheos can always pop up again somewhere else later. If they do they will decide whether or not to operate or just treat them. If they move to your heart or lungs though they can’t remove them and may just try different therapies to slow or stall their growth. There is also the chance that I will get lucky and none of this will ever come back again. I’m expecting them to come back though and if they never do then I will have the joy of that gift. If any or all of the kids have this gene mutation and have MEN2a then they will need thyroidectomies as well and have to be on hormones for the rest of their lives. I’m just hoping that if any of them have the gene it hasn’t started as a cancer yet.
October 15- I got a call from MD Anderson telling me I have an appointment on November 3rd at 9am. To be honest, I was quite shocked because the last I heard my endo (Dr L) was just talking to them and trying to refer me. I never got to say whether or not I even wanted to go to MD Anderson.
So anyway- the lady on the phone informs me that I have an appointment, tells me when to be there, where to go, and then goes "How will you be traveling?". I told her I had no clue because this was the first I had heard of this. Then she asked me the same question again. I was NOT happy with these people at this point and was getting quite perturbed. So I asked her if there was a patient rep I could talk to about setting up a place for my family to stay and so on. She tells me "We do have hotels in Houston.". Well DUHHHH you think??
She then proceeds to inform me that if my insurance won't cover it then I need to bring $2500 with me for the appointment. So I informed her back that if my insurance didn't cover it I would NOT be there... period! She again informed me that getting an appointment this quickly was a privilege. I told her I don't care what kind of a privilege it is suppose to be, I don't have $2500 laying around for no reason other than as a deposit on a bunch of tests I've already had done before. She then tells me that the money is just for the doctor consultation not any tests. OH MY GOODNESS!!! So I took down all the info and left it at that.
Called my doctor to find out if she had received my email with the links to endocrinologists who had dealt with this before and what her opinion was on me going to the Mayo Clinic. She said the Mayo Clinic in Jacksonville really doesn't deal with things like this because I am VERY rare. She gave me the results of some more of my tests and it seems more has been added to my diagnosis.
I have MEN2A (the RET gene test hasn't come back yet but there is no doubt it will come back positive at this point) complicated by medullary thyroid cancer, pheochromocytomas, and hyperparathyroidism.
I had to ask her just how bad the spots they found were and where exactly they are. The Dr told me that I have one most likely two tumors in my liver that are 1.0-1.5cm, one on my left adrenal gland that is 1.5cm, one by my right adrenal gland that is the same size, and a 3.0cm tumor in my small bowel. She then told me that she had felt some in my lymph nodes in my neck so she already knew they were there plus they are in my parathyroid as well. In other words, I have cancer in my thyroid, my parathyroid, my lymph nodes in my neck, tumors in my liver, on each adrenal gland, and one in my small bowel. I asked her if I had any in my heart or lungs, asked to make sure I didn't have them in my stomach, and then took a deep breath.
I told her that this was good news. I don't think she got it at first. We talked about alternatives to MD Anderson and specialists a little closer. She kept telling me that she feels I should go to MD and so on. I feel that we need to look at ALL our choices and I need to think about my family as well.
October 18th- Monday- I did a bunch of research online over the weekend and on Monday on my own. A place called NIH (National Institute of Health) in Bethesda, Maryland was mentioned several times as well as a Dr Pacak who does a lot of studies on pheos and is considered one of the TOP pheo experts in the country. Found everything I could about my condition, talked to my friend Christine on Sunday night who’s mother has a lot of the same things I have, a lady from the Pheo Support board named Carol called me later in the evening, and earlier MD Anderson called me to let me know that unless I had the $2500 in hand they could not take me. Honestly? I already knew that and it just made me mad to think that they are that stuck on themselves. If any of my children ever wants to be a doctor I hope they have a heart too. After that I called and made an appointment with my endo doctor so we could go over my results.
October 19th- Went to my appointment with the endo (Dr L) and gave her all the contacts I had found for Dr. Pacak, his assistant, another doctor at NIH, all their email addresses, a specialist at H. Lee Moffitt named Dr. Larry Kvols (who my friend Christine’s mother uses), a link to a study that is being done on pheos, any questions I have, and so on. She was very impressed!
She said she couldn’t believe she didn’t think of NIH first because she is from Maryland and knows Dr. Pacak personally. We talked for awhile and I told her what I wanted for my care. I also asked her if this is considered terminal cancer and to please be honest. She told me no that it isn’t at this point but that another form of thyroid cancer is and so I told her I’m happy I don’t have that then. I asked her to explain some of my tests to me, what the things they tested for do, what made her think I have a pheo (test results from two tests, my symptoms I’ve had, and the spots on the CT scan on my adrenal glands), and asked her about getting the kids tested.
At this time she has sent an email and left a message with Dr Pacak’s assistant Karen Adams. We are going to try to get me in at NIH as well as get the kids’ testing done there for the MEN2a gene because they are at the forefront on technology, they love cases like mine because I am considered highly rare-out of 25,000 people each year less than 1,000 get medullary thyroid carcinoma- but it gets even more rare because MEN2a is rare. If you have MEN2a, which is a gene mutation, then you have high chances of having the medullary cancer, the pheochromocytomas, adrenal tumors, and hyperparathyroidism plus a few other things. Around 25 percent of MEN2a patients develop all three (MTC, pheos, AND parathyroid tumors). Of course, I have ALL of them. Hey again, why do it halfbutted when you can just do it right eh?
Anyway- the right people at NIH have been contacted thanks to those wonderful people on the pheo board, we have a plan in place, we have a backup doctor in mind, I have information on free flights through Angel Flights and Mercy Medical Flights, AND we are staying open to the octreotide therapy clinical trials for use as well (it’s a drug they are researching that stops the growth of tumors. Doesn’t get rid of them but it does stop them).
Everything on me to this point is operable. Depending on where the tumors in the liver are, the liver can be shaved and it grows back. My adrenal glands are going to be removed the endo says and I will have to take a steroid supplement for the rest of my life. The one in my small bowel I’m sure can be removed as well and hey, they can even keep some since a person has over 15 feet of it.
We’re not sure where exactly the pheos are at this point but if/when we find them they will be the first things to go. THEY are the dangerous thing because they are what can cause me to have a heart attack while in surgery. So we go after them first. My total thyroid will be removed and I will have to be on thyroid hormone replacement pills for the rest of my life. My parathyroid glands will be removed and I honestly don’t know if they will even try to save any. I will have to be on calcium supplements for the rest of my life though if they do take them all. The lymph nodes in my neck will be removed and hopefully those are the only ones this has spread to. There are none at present in my heart, lungs, or brain. So they have a chance of removing everything.
The bad news is that because of this genetic mutation the MTC and pheos can always pop up again somewhere else later. If they do they will decide whether or not to operate or just treat them. If they move to your heart or lungs though they can’t remove them and may just try different therapies to slow or stall their growth. There is also the chance that I will get lucky and none of this will ever come back again. I’m expecting them to come back though and if they never do then I will have the joy of that gift. If any or all of the kids have this gene mutation and have MEN2a then they will need thyroidectomies as well and have to be on hormones for the rest of their lives. I’m just hoping that if any of them have the gene it hasn’t started as a cancer yet.
Wednesday, October 13, 2004
October 13th- (CT Scan Results)
The CT Scan results came back very badly today. The cancer has spread past my thyroid and I also have cancer in my abdomen, liver, "gut", and adrenal glands. I am now considered Stage 5 in my cancer. The worst stage. Long term survival rate is less than 16% according to the internet.
The good points? Well this isn't in my heart or lungs yet. It's a slow moving cancer (meaning I have had this for a long time) so I don't have to worry about making it to my 30th birthday.
The bad points? Radiation therapy and chemotherapy really don't do much to cure this. The only hope is removing my adrenal glands, removing part of my liver, and trying to remove as many tumors as we can. Oh and removing my thyroid of course.
This form of cancer is not curable and as far advanced as it is it will most likely pop up in other places in the future. I am stuck with this for the rest of my life because it is a cellular genetic cancer. It's a gene mutation and as such it is forever changing and starting new cancerous cells.
So no, Jo can't be cured of her cancer. I will most likely have one surgery possibly every year for the rest of my life to remove new growths or an organ that it has overrun. I will be on thyroid medication, most likely calcium supplements, and also adrenal medication as well for the rest of my life plus stars know what else they will toss in.
My thyroidectomy has been cancelled. I have to be referred to a specialist for the surgery now and then begin cancer treatment and/or surgery for removal of other things after that.They are wanting to refer me to MD Anderson center in Houston, TX as it is one of the best in the country and deals with cancer like mine. I'm trying to find something closer to home to make it easier on all of us. Not sure how that will go.I can't believe all this is going on. :(
The CT Scan results came back very badly today. The cancer has spread past my thyroid and I also have cancer in my abdomen, liver, "gut", and adrenal glands. I am now considered Stage 5 in my cancer. The worst stage. Long term survival rate is less than 16% according to the internet.
The good points? Well this isn't in my heart or lungs yet. It's a slow moving cancer (meaning I have had this for a long time) so I don't have to worry about making it to my 30th birthday.
The bad points? Radiation therapy and chemotherapy really don't do much to cure this. The only hope is removing my adrenal glands, removing part of my liver, and trying to remove as many tumors as we can. Oh and removing my thyroid of course.
This form of cancer is not curable and as far advanced as it is it will most likely pop up in other places in the future. I am stuck with this for the rest of my life because it is a cellular genetic cancer. It's a gene mutation and as such it is forever changing and starting new cancerous cells.
So no, Jo can't be cured of her cancer. I will most likely have one surgery possibly every year for the rest of my life to remove new growths or an organ that it has overrun. I will be on thyroid medication, most likely calcium supplements, and also adrenal medication as well for the rest of my life plus stars know what else they will toss in.
My thyroidectomy has been cancelled. I have to be referred to a specialist for the surgery now and then begin cancer treatment and/or surgery for removal of other things after that.They are wanting to refer me to MD Anderson center in Houston, TX as it is one of the best in the country and deals with cancer like mine. I'm trying to find something closer to home to make it easier on all of us. Not sure how that will go.I can't believe all this is going on. :(
Tuesday, October 12, 2004
Cancer, Pheos, MEN2a...Oh My! (October 1st-14th Updates)
October 1st- the biopsy came back... abnormal. And not just abnormal but "abnormal for being abnormal". I had to have blood drawn today to test for a rare form of cancer (medullary thyroid cancer) and no matter what I have to have a complete thyroidectomy. They have to take all of it because even if I don't have this cancer the cells were so oddly abnormal that it is being treated like cancer no matter what. I have an appointment on Monday with the surgeon and will most likely have the surgery in the next week or two.
After that I will be on lifelong thyroid hormone replacement, tested every few months for thyroid levels, and also tested once or twice a year for cancerous cells. I'll have to stay overnight at least after the surgery but should be able to go home the next day if all my levels check out. Lil Man doesn't have to wean but he can't nurse for probably about three days. I don't know how we're going to do that one. We won't know also how bad it is until they go in and they may have to remove more once they are in there. Main worry is having to remove the parathyroid glands and then I would be on lifelong calcium as well. Other than that again we won't know until they actually get in there.
Oh and I have nodules forming on the right side of my thyroid as well and that is another reason they are wondering about cancer because the little buggers are just forming and growing...little rotters! I thought I was going in and going to hear that the biopsy came back normal and discuss removing these nodules. Instead I get told that I may have a rare form of cancer and even if I don't it doesn't matter because I'm going to be treated as if I do because something isn't right no matter what. Then I get told that they are removing my entire thyroid. I had to ask her twice what she meant thinking I heard her wrong. NOT a good day and not what I thought was going to happen.
October 04- Went to the appointment with the surgeon today. He spent all of 5 minutes checking me and had me swallow a few times. He said between feeling my throat and reading the pathology report that he recommends a total thyroidectomy too. We also found out something NEW as well. :( He said the pathologist’s report said that the nodules on the left had come back with abnormal cells in the biopsy but that the one in the middle (on the isthmus) “appeared to be cancerous”. This is a big difference from being told that the cells looked abnormal for being abnormal. He also said that the one in the middle of my throat may be a tumor (it was Hurthle or something I think but I can’t remember the name of it.) but they won’t know until they go in.
He thinks that this mass is pushing on the nerves in my throat and that is causing the hoarseness and headaches that I’ve been having as well as the coughing. The surgeon explained to me what would happen and everything which I already knew everything he talked about from my research online. LOL. That part was cool because I just looked at him and said “Yeah”, “okay”, “I know” and he just looked at me kind of funny until I told him I had already read about all of it so I was prepared. He also explained about how in some instances they might nick the nerves damaging the vocal cords which leaves you hoarse for awhile but most times it goes away after awhile. Also told me about what happens if they have to remove the parathyroid, which I already knew but if they remove them then I have to take calcium supplements for the rest of my life as well as the hormones.
So now I have to call him tomorrow to see when we can schedule the surgery but it’s looking like it may be next Thursday or Friday and if not then the week after that. He wants to wait for the results from the calcitonin test (the blood test I took for the Medullary thyroid carcinoma last week) and we should have those back hopefully by Friday so that’s why we are waiting an extra week instead of doing it this Friday. He said I should be able to go home the next night after the surgery. My neck should hurt and be hard to move for about 10 days but I should be fine to move around as usual after about four days if nothing goes wrong. I start the hormones the day after the surgery and will take them for the rest of my life. Ugh, I stink at taking meds so this is going to be a real chore for me.
I asked if he could do anything about me developing keloids (excessive scar tissue) and he said no. There is nothing he can do to prevent me from developing them so there goes my hopes of a small little scar that no one will see. It WILL get puffy and thick just like every other scar on my body and I hate that. :(
So again, no real good news. I’ll still have my voice though so I guess that’s a good thing. And I’ll still be alive no matter what for awhile if nothing else. ;) It could be a lot worse and I need to remember that even if this is the worst I’VE ever dealt with personally. I’m ready for the worst but hoping for the best.
October 5th- Just talked to the surgeon's office and my surgery is scheduled for 7:30am on October 21st. That's a little over two weeks away which is more time than I thought I had and that's nice. I will have to go in for a Pre-Op appointment the 18th or 19th (whenever they can schedule me in) to get everything ready and probably talk to the anesthesiologist. Now all that's left is the blood test results and those will hopefully be back by this Friday.
October 7th- The Dr called me and my test results came back positive meaning I have Medullary Thyroid Cancer... the rare form of thyroid cancer. My calcitonin levels came back at 16,500. When I asked what the normal was my doctor said 5 so I guess I am WAY over. Tomorrow I have to go have blood drawn for genetic testing to see if it is sporadic MTC or MEN I or MEN II. Each one is different. Then I have to have a CT scan on my throat, chest, and abdomen to see if it has spread further.
Again, not good news and not what I was hoping for. This has hit us pretty hard and I cried for about half an hour. Now I'm just numb but at least now I know why I've felt so poorly the last several months. We have so much to do over the next two weeks and so much to cover. Things will be very busy around here with ALOT of changes.
October 8th- (Calcitonin Test Follow Up w/Endo) Had an appointment with the endocrinologist today. She just wanted to go over the blood test results and explain them to me some more. She said we needed to have more blood drawn as I now need to have the genetic testing done to determine if it's linked to the medullary thyroid carcinoma I have. We are pretty sure we know which kind and what stage I am in but I'm not ready to share at this time. There's a good chance the kids will have to have testing as well and then we go on from there.
They took about 6 vials of blood so they will do the genetic testing, a CEA test, a pregnancy test (that one made me laugh. no way possible I am prego you know?), test for pheochromocytoma, redoing the calcitonin test because we have to, check my cancer markers, and about 4 or 5 other tests as well. All to determine different things about my cancer. My CT scan is scheduled for Monday afternoon and I get the iv accompaniment (?) with it which means they will put a dye in me to make the picture clearer. We will be checking my throat, chest, and abdomen for dark spots or signs of the cancer having spread. MAYBE sometime next week I will get some of the blood test results back but some could take longer because they are such rare tests.
This form of cancer is very rare. There are around 1000 or less diagnosis of medullary thyroid carcinoma each year so I'm told/have read. The disorder I most likely have is even more rare. With the other forms of thyroid cancer you basically get your thyroid out and you are okay if it hasn't spread. Afterwards you get radiation iodine therapy and if it's really bad you get chemotherapy.
This one though is different. If you get your thyroid out and it hasn't spread then your chances are good. Radiation iodine therapy isn't done for this one unless it has spread or progressed and even then it's just so you can say you tried. It really doesn't do much except maybe help to extend your life. Same with chemotherapy. Both are just a way to prolong your life for a little longer.And I will stop there because I really don't want to go into it anymore.
Calcitonin levels- 16,442.4
Normal calcitonin levels- 4.6 or less
Hope to see levels at after surgery- 0.0
Middle mass on isthmus is a tumor.
Vascular and approximately 4cm or so long.
Large mass on left is calcified and approximately 4cm or so.
Second mass on left is partially calcified and not sure of size.
Third mass on left unknown.
Small nodules currently forming on right side of thyroid.
Entire mass seems to be pressing on/forming around larynxeal nerve causing hoarseness, dizziness, headache, difficulty swallowing, and difficulty breathing.
Weight (according to their scales which included me with heavy clothing sometimes, mind you )-on September 21st- 160lbs
on September 23rd- 161lbs
on October 1st- 163lbs
on October 8th- 157lbs
October 12th- (CT Scan Was A Nightmare!) Yesterday we left the house at 3:30p and headed to the endo’s office where I had to drop off a sample. Got there and found out I had to give yet MORE blood. So they took another vial of blood and off we went to the hospital. Got to Outpatient Registration, told Vin and the kids I would call when I was done, and got registered. I was back sitting in Radiology by 4pm and my appointment was at 4:30 so I was good to go.
Sat there nervous as heck and 4:30 came and went, then 5:00 came and went, people were going back and coming out that had come in after me, and then finally 5:25 came and a guy who had come after me got called back. I was a nervous wreck at this point and had had enough!! I walked up to the desk and asked the lady just how much longer it was going to be, why were other people going ahead of me, and why had I been waiting an hour and a half?? She gave me a blank stare and called back to CT where I’m thinking they obviously forgot about me or lost my paperwork because all of a sudden I was told to go back there.
I get back there at 5:30p and sit there for 5 minutes when this nurse comes in and goes “So you’ve had both of your barium shakes right?” Ummmm huh?? I told her I was getting an IV accompaniment and nobody said anything about any shakes. She said “Dr L’s office didn’t have you pick up anything to drink before this?”. I told her know "no" and got “It figures, big surprise there”. UGH!!!
So she brings in this quartsize vanilla shake looking thing and tells me that I need to drink this one and then half an hour later I will have to drink another. This was the most horrible stuff, besides that stuff they give you for your glucose test when you’re pregnant, that I have EVER tasted. It was like liquid chalk with metallic dust mixed in. It was awful!! I gagged several times and had to chug it so I wouldn’t throw up. Right after finishing the first one I started feeling somewhat nauseated. At around 6:05p she gave me the second and I belted through that one as well trying not to throw up. Finally at 6:15p they called me into the CT scan room and informed me that I STILL had to get an IV accompaniment. I wanted to just cry right then and there I swear.
I laid down and the girl got the IV in telling me that she hoped it didn’t back up because my veins were really small. Then this machine that the IV was hooked up to started shooting this liquid into me (like injections over and over again) and I cried out because it burned and stung so bad I thought I was going to bawl. Good thing- it eased up after about 45 seconds. Bad thing- I had to go through this a total of four times. They passed me through this metal donut a bunch of times and then they were done.
Afterwards the girl took my IV out and said that she was glad because it looked like it didn’t back up at all. I looked at my hand and it was swollen and turning red and getting bigger. I said “Ummmmm, it IS swollen and it DID back up! Look at my other hand. I have NO meat on my hands, they are literally skin, bones, and veins. That one doesn’t look like this one at all!”. She said that it only looked like it was backed up a little and to put heat on it when I got home and then cold and it should go away. After that I got up and they said I could go.
I wasn’t feeling too good so I stopped by the bathroom on my way out to throw up and then called Vin on the cell phone. He wasn’t too happy because he had been trying to find me and nobody could give him any answers. I told him I didn’t feel well and to come get me. He picked me up, we grabbed dinner, and went home. On the way home my hand was even more swollen and looking badly bruised with this ugly purple and red color. Got home, had dinner, and I started feeling worse.
Within an hour I was throwing up, had upset stomach (the NICE way of putting it. Ewwwwww), dizzy, faint, nauseous, and just felt horrid. My hand was still swollen and hurt but the ugly color was going away. In between trips to the bathroom I put heat on my hand. Finally around 10pm I told Vinny that something was wrong and looked up CT scan+side effects on google. Found out I was possibly having an allergic reaction to either the barium or the iodine. LOVELY JUST FREAKING LOVELY!!!!
I called the doctor over an hour ago but she hasn’t called me back. I called her on Friday with questions and never got a call back. Called her yesterday with questions about the scan BEFORE I was going for it and she never called me back either. You would think she might call me back when I leave a message saying I think I’ve had an allergic reaction to the stuff from the scan. Today my hand isn’t as swollen but it still hurts. The ugly color is gone thankfully but the vein is bruised. You can see it about two inches up my hand. I’m still pretty nauseated but I don’t feel half as bad as I did last night. We’re going to have to figure something else out because I am NOT going through this reaction everytime they want to do a scan on me. No way no how! I should get the scan results back sometime today and I will post if I’m able to. One nightmare down…stars only know how many more to go. Ugh ugh ugh.
(later the same day) Doctor's office called me back at 2:25p and told me that Dr L wanted me to come be seen for my symptoms. I told them I'm only still having nausea and a little bit of a breathing problem that I had called to tell them what happened LAST NIGHT so that they could document it and not put me through that again! They called me in some stupid prescription for the nausea and breathing at Walgreen's but I'm not picking the stupid thing up. Give me a break! Ugh. I also asked if they had my CT scan results and the girl said "We'll see if we can track them down". This is so irritating! The girl that ran the scan last night said they should have them by early afternoon so I KNOW they are in that office!! I got my Pre-Op appointment finally and just need to go pick the paperwork for it up.
October 1st- the biopsy came back... abnormal. And not just abnormal but "abnormal for being abnormal". I had to have blood drawn today to test for a rare form of cancer (medullary thyroid cancer) and no matter what I have to have a complete thyroidectomy. They have to take all of it because even if I don't have this cancer the cells were so oddly abnormal that it is being treated like cancer no matter what. I have an appointment on Monday with the surgeon and will most likely have the surgery in the next week or two.
After that I will be on lifelong thyroid hormone replacement, tested every few months for thyroid levels, and also tested once or twice a year for cancerous cells. I'll have to stay overnight at least after the surgery but should be able to go home the next day if all my levels check out. Lil Man doesn't have to wean but he can't nurse for probably about three days. I don't know how we're going to do that one. We won't know also how bad it is until they go in and they may have to remove more once they are in there. Main worry is having to remove the parathyroid glands and then I would be on lifelong calcium as well. Other than that again we won't know until they actually get in there.
Oh and I have nodules forming on the right side of my thyroid as well and that is another reason they are wondering about cancer because the little buggers are just forming and growing...little rotters! I thought I was going in and going to hear that the biopsy came back normal and discuss removing these nodules. Instead I get told that I may have a rare form of cancer and even if I don't it doesn't matter because I'm going to be treated as if I do because something isn't right no matter what. Then I get told that they are removing my entire thyroid. I had to ask her twice what she meant thinking I heard her wrong. NOT a good day and not what I thought was going to happen.
October 04- Went to the appointment with the surgeon today. He spent all of 5 minutes checking me and had me swallow a few times. He said between feeling my throat and reading the pathology report that he recommends a total thyroidectomy too. We also found out something NEW as well. :( He said the pathologist’s report said that the nodules on the left had come back with abnormal cells in the biopsy but that the one in the middle (on the isthmus) “appeared to be cancerous”. This is a big difference from being told that the cells looked abnormal for being abnormal. He also said that the one in the middle of my throat may be a tumor (it was Hurthle or something I think but I can’t remember the name of it.) but they won’t know until they go in.
He thinks that this mass is pushing on the nerves in my throat and that is causing the hoarseness and headaches that I’ve been having as well as the coughing. The surgeon explained to me what would happen and everything which I already knew everything he talked about from my research online. LOL. That part was cool because I just looked at him and said “Yeah”, “okay”, “I know” and he just looked at me kind of funny until I told him I had already read about all of it so I was prepared. He also explained about how in some instances they might nick the nerves damaging the vocal cords which leaves you hoarse for awhile but most times it goes away after awhile. Also told me about what happens if they have to remove the parathyroid, which I already knew but if they remove them then I have to take calcium supplements for the rest of my life as well as the hormones.
So now I have to call him tomorrow to see when we can schedule the surgery but it’s looking like it may be next Thursday or Friday and if not then the week after that. He wants to wait for the results from the calcitonin test (the blood test I took for the Medullary thyroid carcinoma last week) and we should have those back hopefully by Friday so that’s why we are waiting an extra week instead of doing it this Friday. He said I should be able to go home the next night after the surgery. My neck should hurt and be hard to move for about 10 days but I should be fine to move around as usual after about four days if nothing goes wrong. I start the hormones the day after the surgery and will take them for the rest of my life. Ugh, I stink at taking meds so this is going to be a real chore for me.
I asked if he could do anything about me developing keloids (excessive scar tissue) and he said no. There is nothing he can do to prevent me from developing them so there goes my hopes of a small little scar that no one will see. It WILL get puffy and thick just like every other scar on my body and I hate that. :(
So again, no real good news. I’ll still have my voice though so I guess that’s a good thing. And I’ll still be alive no matter what for awhile if nothing else. ;) It could be a lot worse and I need to remember that even if this is the worst I’VE ever dealt with personally. I’m ready for the worst but hoping for the best.
October 5th- Just talked to the surgeon's office and my surgery is scheduled for 7:30am on October 21st. That's a little over two weeks away which is more time than I thought I had and that's nice. I will have to go in for a Pre-Op appointment the 18th or 19th (whenever they can schedule me in) to get everything ready and probably talk to the anesthesiologist. Now all that's left is the blood test results and those will hopefully be back by this Friday.
October 7th- The Dr called me and my test results came back positive meaning I have Medullary Thyroid Cancer... the rare form of thyroid cancer. My calcitonin levels came back at 16,500. When I asked what the normal was my doctor said 5 so I guess I am WAY over. Tomorrow I have to go have blood drawn for genetic testing to see if it is sporadic MTC or MEN I or MEN II. Each one is different. Then I have to have a CT scan on my throat, chest, and abdomen to see if it has spread further.
Again, not good news and not what I was hoping for. This has hit us pretty hard and I cried for about half an hour. Now I'm just numb but at least now I know why I've felt so poorly the last several months. We have so much to do over the next two weeks and so much to cover. Things will be very busy around here with ALOT of changes.
October 8th- (Calcitonin Test Follow Up w/Endo) Had an appointment with the endocrinologist today. She just wanted to go over the blood test results and explain them to me some more. She said we needed to have more blood drawn as I now need to have the genetic testing done to determine if it's linked to the medullary thyroid carcinoma I have. We are pretty sure we know which kind and what stage I am in but I'm not ready to share at this time. There's a good chance the kids will have to have testing as well and then we go on from there.
They took about 6 vials of blood so they will do the genetic testing, a CEA test, a pregnancy test (that one made me laugh. no way possible I am prego you know?), test for pheochromocytoma, redoing the calcitonin test because we have to, check my cancer markers, and about 4 or 5 other tests as well. All to determine different things about my cancer. My CT scan is scheduled for Monday afternoon and I get the iv accompaniment (?) with it which means they will put a dye in me to make the picture clearer. We will be checking my throat, chest, and abdomen for dark spots or signs of the cancer having spread. MAYBE sometime next week I will get some of the blood test results back but some could take longer because they are such rare tests.
This form of cancer is very rare. There are around 1000 or less diagnosis of medullary thyroid carcinoma each year so I'm told/have read. The disorder I most likely have is even more rare. With the other forms of thyroid cancer you basically get your thyroid out and you are okay if it hasn't spread. Afterwards you get radiation iodine therapy and if it's really bad you get chemotherapy.
This one though is different. If you get your thyroid out and it hasn't spread then your chances are good. Radiation iodine therapy isn't done for this one unless it has spread or progressed and even then it's just so you can say you tried. It really doesn't do much except maybe help to extend your life. Same with chemotherapy. Both are just a way to prolong your life for a little longer.And I will stop there because I really don't want to go into it anymore.
Calcitonin levels- 16,442.4
Normal calcitonin levels- 4.6 or less
Hope to see levels at after surgery- 0.0
Middle mass on isthmus is a tumor.
Vascular and approximately 4cm or so long.
Large mass on left is calcified and approximately 4cm or so.
Second mass on left is partially calcified and not sure of size.
Third mass on left unknown.
Small nodules currently forming on right side of thyroid.
Entire mass seems to be pressing on/forming around larynxeal nerve causing hoarseness, dizziness, headache, difficulty swallowing, and difficulty breathing.
Weight (according to their scales which included me with heavy clothing sometimes, mind you )-on September 21st- 160lbs
on September 23rd- 161lbs
on October 1st- 163lbs
on October 8th- 157lbs
October 12th- (CT Scan Was A Nightmare!) Yesterday we left the house at 3:30p and headed to the endo’s office where I had to drop off a sample. Got there and found out I had to give yet MORE blood. So they took another vial of blood and off we went to the hospital. Got to Outpatient Registration, told Vin and the kids I would call when I was done, and got registered. I was back sitting in Radiology by 4pm and my appointment was at 4:30 so I was good to go.
Sat there nervous as heck and 4:30 came and went, then 5:00 came and went, people were going back and coming out that had come in after me, and then finally 5:25 came and a guy who had come after me got called back. I was a nervous wreck at this point and had had enough!! I walked up to the desk and asked the lady just how much longer it was going to be, why were other people going ahead of me, and why had I been waiting an hour and a half?? She gave me a blank stare and called back to CT where I’m thinking they obviously forgot about me or lost my paperwork because all of a sudden I was told to go back there.
I get back there at 5:30p and sit there for 5 minutes when this nurse comes in and goes “So you’ve had both of your barium shakes right?” Ummmm huh?? I told her I was getting an IV accompaniment and nobody said anything about any shakes. She said “Dr L’s office didn’t have you pick up anything to drink before this?”. I told her know "no" and got “It figures, big surprise there”. UGH!!!
So she brings in this quartsize vanilla shake looking thing and tells me that I need to drink this one and then half an hour later I will have to drink another. This was the most horrible stuff, besides that stuff they give you for your glucose test when you’re pregnant, that I have EVER tasted. It was like liquid chalk with metallic dust mixed in. It was awful!! I gagged several times and had to chug it so I wouldn’t throw up. Right after finishing the first one I started feeling somewhat nauseated. At around 6:05p she gave me the second and I belted through that one as well trying not to throw up. Finally at 6:15p they called me into the CT scan room and informed me that I STILL had to get an IV accompaniment. I wanted to just cry right then and there I swear.
I laid down and the girl got the IV in telling me that she hoped it didn’t back up because my veins were really small. Then this machine that the IV was hooked up to started shooting this liquid into me (like injections over and over again) and I cried out because it burned and stung so bad I thought I was going to bawl. Good thing- it eased up after about 45 seconds. Bad thing- I had to go through this a total of four times. They passed me through this metal donut a bunch of times and then they were done.
Afterwards the girl took my IV out and said that she was glad because it looked like it didn’t back up at all. I looked at my hand and it was swollen and turning red and getting bigger. I said “Ummmmm, it IS swollen and it DID back up! Look at my other hand. I have NO meat on my hands, they are literally skin, bones, and veins. That one doesn’t look like this one at all!”. She said that it only looked like it was backed up a little and to put heat on it when I got home and then cold and it should go away. After that I got up and they said I could go.
I wasn’t feeling too good so I stopped by the bathroom on my way out to throw up and then called Vin on the cell phone. He wasn’t too happy because he had been trying to find me and nobody could give him any answers. I told him I didn’t feel well and to come get me. He picked me up, we grabbed dinner, and went home. On the way home my hand was even more swollen and looking badly bruised with this ugly purple and red color. Got home, had dinner, and I started feeling worse.
Within an hour I was throwing up, had upset stomach (the NICE way of putting it. Ewwwwww), dizzy, faint, nauseous, and just felt horrid. My hand was still swollen and hurt but the ugly color was going away. In between trips to the bathroom I put heat on my hand. Finally around 10pm I told Vinny that something was wrong and looked up CT scan+side effects on google. Found out I was possibly having an allergic reaction to either the barium or the iodine. LOVELY JUST FREAKING LOVELY!!!!
I called the doctor over an hour ago but she hasn’t called me back. I called her on Friday with questions and never got a call back. Called her yesterday with questions about the scan BEFORE I was going for it and she never called me back either. You would think she might call me back when I leave a message saying I think I’ve had an allergic reaction to the stuff from the scan. Today my hand isn’t as swollen but it still hurts. The ugly color is gone thankfully but the vein is bruised. You can see it about two inches up my hand. I’m still pretty nauseated but I don’t feel half as bad as I did last night. We’re going to have to figure something else out because I am NOT going through this reaction everytime they want to do a scan on me. No way no how! I should get the scan results back sometime today and I will post if I’m able to. One nightmare down…stars only know how many more to go. Ugh ugh ugh.
(later the same day) Doctor's office called me back at 2:25p and told me that Dr L wanted me to come be seen for my symptoms. I told them I'm only still having nausea and a little bit of a breathing problem that I had called to tell them what happened LAST NIGHT so that they could document it and not put me through that again! They called me in some stupid prescription for the nausea and breathing at Walgreen's but I'm not picking the stupid thing up. Give me a break! Ugh. I also asked if they had my CT scan results and the girl said "We'll see if we can track them down". This is so irritating! The girl that ran the scan last night said they should have them by early afternoon so I KNOW they are in that office!! I got my Pre-Op appointment finally and just need to go pick the paperwork for it up.
Friday, September 24, 2004
The Beginning...
I have decided to keep track of my doctor appointments, diagnosis, and so on here so that I have a "written" log of everything that happens. I don't even know where to start or HOW to start at this point. I hope to make this blog more uniform later on but would like to make sure I don't miss posting/saving anything in the meantime.
On September 2nd, 2004 I went to the Walk-In Clinic because my ulcer pain was very bad and I couldn't handle it anymore. I took Lil Man with me just to get him checked out for the stuffiness and runny nose...figured why not you know? So he got a prescription for congestion, no biggie and he was done. The physician's assistant prescribed me Tagamet for the ulcer, checked my neck, got a little weird on me, ordered an ultrasound of my throat for the next day, and told me to make an appointment for two weeks.
So he goes out, gets my prescription, comes back in, and tells me that we're going to get bloodwork for testing my thyroid levels. I reminded him to NOT forget to do a pregnancy test (breastfeeding can throw things off and freak you out when you know you shouldn't be). I go, get blood drawn, and leave.
Friday, September 3rd- I show up for my u/s and find out it is in another building. I tell them I found out that the Tagamet excretes into breastmilk, is not recommended on several medical sites as well as NOT recommended by the pharmacist who filled my prescription for breastfeeding mothers, and ask to find out if there is something else I can take. I also asked if they had my pregnancy test results as well. Doctor is out to lunch come back after my u/s.
I go over to have the ultrasound done and the girl is kind of being a weirdo. She starts looking at this thing in my throat and goes "WOW" and then a minute or two later "Oh my goodness!". I do a sideways glance trying to see but can't. Then a few minutes later I get "I can't believe nobody ever said anything about this before now!". I tell her that I had my thyroid levels checked 2 years ago, the doctor blew it off, so I figured it was nothing and did too. She then goes "How bad are the symptoms so far?". I looked at her and said "I don't know what it is YET!". To which she gives me a funny look and plays stupid on any questions I have.
That was bad enough but then I go back over to the doctor's office and find out that the doctor STILL is not back from lunch to please call later. I tell them I need to know about the Tagamet. I call later and THE DOCTOR HAS GONE HOME FOR THE DAY AND SO HAS HIS NURSE!!! No call no nothing!! I ask again for my test results and am told that no one in the office can give me that. So the girl says she will put the file on the doctor's desk so he calls me first thing Tuesday morning.
September 8th update- (I edited out a few things so I'm sorry if some of this doesn't make sense anymore) This morning the supervisor Wendy called me and asked me to tell her the story so I did. She said that she got my message last night around 9pm and she was upset for me. She said that she was so sorry that this happened and that this is not how their clinic is run or the impression they want to make upon people. She told me that she would find out the preg test results and have the Clinical Supervisor call me back... she promised I wouldn't be ignored again.
The CS, Stacy, called me a little bit later and told me that the pregnancy test was negative to which I almost sobbed "THANK YOU SO MUCH" and she giggled a little. Then she said that she also had my u/s results if I would like them. She told me that I have FOUR nodules on the right side of my right thyroid and that I now must see an endocrinologist for a biopsy. She said that the chance of cancer is really rare (which I honestly haven't been worried about that anyway). This town has one endocrinologist so I have an appointment with her on September 23rd. She will stick a small needle into my neck to do the biopsy and we go from there.
So many different things could happen so I will just wait until my appointment and go from there. Hopefully there's some small simple thing that is all I will need and the bigger more serious things won't even come up.
September 22nd update - They didn't do anything but feel my throat, say I would need to see someone else for the other symptoms I'm having, and schedule the biopsy for Friday. Very disappointing and frustrating to say the least.
September 24th update- I had my biopsy done. There are now 12 little needle holes in my throat. Quite lovely really. Goes nicely with the purple and blue bruise that is forming around them. Ugh.
Finally found a few things out- Two of the nodules are at least 4cm wide which is pretty big. One is one the middle of my thyroid gland and the other three are on the left of it not the right as the doctor's office told me. The one in the middle is very vascular meaning it has alot of blood flow to it. The doctor had never seen so much blood flowing to one of these things.
Basically it has taken on a life of it's own and instead of my body fighting it because it doesn't belong it has accepted it and treats it as if it belongs. The middle one is the largest one btw. One of the ones on the left is pretty solidly calcified meaning it's hard as a rock. There is no draining it or shrinking it. A second one is fast becoming the same way.
So this means a few things. One- the doctor is worried about cancer again so next Friday we will get the biopsy results. I'm not too worried about it though it's just a little scary. Two- I DEFINATELY have to have surgery done to remove the nodules. The problem is going to be that middle one and there is a good chance I could have some vocal damage. If it was on the left or right it wouldn't be such a big deal but because it is right in the middle it ups the chances for things being complicated. The fact that this nodule has blood vessels going to and feeding it ups them even more. I now have to start cutting back on Lil Man's nursing and try to wean him.
This more than anything breaks my heart. I will be talking to the doctor next Friday at my appointment and if it comes right down to it I will be putting off the surgery for an extra month or two. It's going to be bad enough that I will be gone for a night or two in the hospital after the surgery but I can't see traumatizing Lil Man suddenly. If I put it off for a month or so it will give us time to wean slowly and therefore not so hard on him.
She can't do anything right now for my breathing or swallowing/eating problems. There's just nothing that can ease the pain or pressure. If they had just been filled with fluid it would have been much easier but hey, then it wouldn't be ME and MY luck would it?
Oh and what caused this considering my thyroid levels are perfectly normal? No clue. She said genetically it's like cancer...a genetic mistake that happens and it grows, forms, and does all the things cancer does but without the life threatening disease thrown in (this is IF the nodules are benign). She says you either get these and they form cancer or you get these and they are benign but they both start and live the same way. Lovely thought isn't it? LOL.
I have decided to keep track of my doctor appointments, diagnosis, and so on here so that I have a "written" log of everything that happens. I don't even know where to start or HOW to start at this point. I hope to make this blog more uniform later on but would like to make sure I don't miss posting/saving anything in the meantime.
On September 2nd, 2004 I went to the Walk-In Clinic because my ulcer pain was very bad and I couldn't handle it anymore. I took Lil Man with me just to get him checked out for the stuffiness and runny nose...figured why not you know? So he got a prescription for congestion, no biggie and he was done. The physician's assistant prescribed me Tagamet for the ulcer, checked my neck, got a little weird on me, ordered an ultrasound of my throat for the next day, and told me to make an appointment for two weeks.
So he goes out, gets my prescription, comes back in, and tells me that we're going to get bloodwork for testing my thyroid levels. I reminded him to NOT forget to do a pregnancy test (breastfeeding can throw things off and freak you out when you know you shouldn't be). I go, get blood drawn, and leave.
Friday, September 3rd- I show up for my u/s and find out it is in another building. I tell them I found out that the Tagamet excretes into breastmilk, is not recommended on several medical sites as well as NOT recommended by the pharmacist who filled my prescription for breastfeeding mothers, and ask to find out if there is something else I can take. I also asked if they had my pregnancy test results as well. Doctor is out to lunch come back after my u/s.
I go over to have the ultrasound done and the girl is kind of being a weirdo. She starts looking at this thing in my throat and goes "WOW" and then a minute or two later "Oh my goodness!". I do a sideways glance trying to see but can't. Then a few minutes later I get "I can't believe nobody ever said anything about this before now!". I tell her that I had my thyroid levels checked 2 years ago, the doctor blew it off, so I figured it was nothing and did too. She then goes "How bad are the symptoms so far?". I looked at her and said "I don't know what it is YET!". To which she gives me a funny look and plays stupid on any questions I have.
That was bad enough but then I go back over to the doctor's office and find out that the doctor STILL is not back from lunch to please call later. I tell them I need to know about the Tagamet. I call later and THE DOCTOR HAS GONE HOME FOR THE DAY AND SO HAS HIS NURSE!!! No call no nothing!! I ask again for my test results and am told that no one in the office can give me that. So the girl says she will put the file on the doctor's desk so he calls me first thing Tuesday morning.
September 8th update- (I edited out a few things so I'm sorry if some of this doesn't make sense anymore) This morning the supervisor Wendy called me and asked me to tell her the story so I did. She said that she got my message last night around 9pm and she was upset for me. She said that she was so sorry that this happened and that this is not how their clinic is run or the impression they want to make upon people. She told me that she would find out the preg test results and have the Clinical Supervisor call me back... she promised I wouldn't be ignored again.
The CS, Stacy, called me a little bit later and told me that the pregnancy test was negative to which I almost sobbed "THANK YOU SO MUCH" and she giggled a little. Then she said that she also had my u/s results if I would like them. She told me that I have FOUR nodules on the right side of my right thyroid and that I now must see an endocrinologist for a biopsy. She said that the chance of cancer is really rare (which I honestly haven't been worried about that anyway). This town has one endocrinologist so I have an appointment with her on September 23rd. She will stick a small needle into my neck to do the biopsy and we go from there.
So many different things could happen so I will just wait until my appointment and go from there. Hopefully there's some small simple thing that is all I will need and the bigger more serious things won't even come up.
September 22nd update - They didn't do anything but feel my throat, say I would need to see someone else for the other symptoms I'm having, and schedule the biopsy for Friday. Very disappointing and frustrating to say the least.
September 24th update- I had my biopsy done. There are now 12 little needle holes in my throat. Quite lovely really. Goes nicely with the purple and blue bruise that is forming around them. Ugh.
Finally found a few things out- Two of the nodules are at least 4cm wide which is pretty big. One is one the middle of my thyroid gland and the other three are on the left of it not the right as the doctor's office told me. The one in the middle is very vascular meaning it has alot of blood flow to it. The doctor had never seen so much blood flowing to one of these things.
Basically it has taken on a life of it's own and instead of my body fighting it because it doesn't belong it has accepted it and treats it as if it belongs. The middle one is the largest one btw. One of the ones on the left is pretty solidly calcified meaning it's hard as a rock. There is no draining it or shrinking it. A second one is fast becoming the same way.
So this means a few things. One- the doctor is worried about cancer again so next Friday we will get the biopsy results. I'm not too worried about it though it's just a little scary. Two- I DEFINATELY have to have surgery done to remove the nodules. The problem is going to be that middle one and there is a good chance I could have some vocal damage. If it was on the left or right it wouldn't be such a big deal but because it is right in the middle it ups the chances for things being complicated. The fact that this nodule has blood vessels going to and feeding it ups them even more. I now have to start cutting back on Lil Man's nursing and try to wean him.
This more than anything breaks my heart. I will be talking to the doctor next Friday at my appointment and if it comes right down to it I will be putting off the surgery for an extra month or two. It's going to be bad enough that I will be gone for a night or two in the hospital after the surgery but I can't see traumatizing Lil Man suddenly. If I put it off for a month or so it will give us time to wean slowly and therefore not so hard on him.
She can't do anything right now for my breathing or swallowing/eating problems. There's just nothing that can ease the pain or pressure. If they had just been filled with fluid it would have been much easier but hey, then it wouldn't be ME and MY luck would it?
Oh and what caused this considering my thyroid levels are perfectly normal? No clue. She said genetically it's like cancer...a genetic mistake that happens and it grows, forms, and does all the things cancer does but without the life threatening disease thrown in (this is IF the nodules are benign). She says you either get these and they form cancer or you get these and they are benign but they both start and live the same way. Lovely thought isn't it? LOL.
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