Posts
Tuesday, December 28, 2004
'Wow! What a Ride!
Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming 'Wow! What a Ride!' -- Hunter S. Thompson
Saturday, December 11, 2004
HOME AGAIN
Hallelujah! Leila and I are home again! I am so thankful to all of my family - everyone pitched in and helped us out so much.
I was well taken care of by my Dad, he kept me company when I was feeling sick and depressed.
Leila was well loved and cared for during the nearly three weeks I had to stay a safe distance from her. It was one of the hardest things I have had to do in my adult life, to be near my baby but not hold her, feed her or kiss her. It was a joyful reunion when I finally felt safe to care for her full-time again.
I was well taken care of by my Dad, he kept me company when I was feeling sick and depressed.
Leila was well loved and cared for during the nearly three weeks I had to stay a safe distance from her. It was one of the hardest things I have had to do in my adult life, to be near my baby but not hold her, feed her or kiss her. It was a joyful reunion when I finally felt safe to care for her full-time again.
Leila has grown so much in the 5 weeks we were away from home. She is chubby! She coos and tries to talk all the time and responds to every expression we make with smiles. She took the moving around from Mom's, Sarah's and Grandma's homes like a champ - like it was just another day and a new "mommy". I am so proud of her.
Now that I am home I sure miss my family. There are so many people and things going on - I had forgotten what it was like to be in action all the time. Here in northern California it is such a slow-paced lifestyle.
Dad, Mom, Sarah, Parker, Andy, Stephy - I miss you already.
Love you.
Friday, December 03, 2004
Thursday, December 02, 2004
THYROID TREATMENTS TRIP ALARMS, STUDY FINDS
"Radioactive medical procedures can set off alarms in a post-9/11 world"
By Liz Szabo, USA TODAY
Most seasoned travelers know that their watches and belt buckles can set off airport metal detectors. A new study also shows that patients who have certain medical procedures might themselves set off security sensors designed to find "dirty" bombs or other radioactive weapons.
Patients may emit small amounts of radiation after being treated with radioactive iodine, for example, or after being injected with compounds used in PET scans, bone scans and cardiac stress tests, says Lionel Zuckier, a radiology professor at New Jersey Medical School.
Patients have been treated with "radiopharmaceuticals" for years, and 16 million nuclear medicine procedures are performed each year, according to the Society of Nuclear Medicine. Since 2001, however, doctors say they're hearing about more patients setting off portable radiation detectors used in subways, tunnels and other public places, says Zuckier, who presented his findings Tuesday at the annual meeting of the Radiological Society of North America in Chicago.
Patients injected with a material called FDG before having a PET scan stop emitting a detectable level of radiation within 24 hours. But patients undergoing iodine therapy for thyroid conditions emit radiation for 95 days.
Many doctors say they now provide patients with detailed explanations of their treatments, along with telephone and pager numbers, just in case patients are stopped by security. Chaitanya Divgi, a nuclear medicine specialist at New York's Memorial Sloan-Kettering Cancer Center, says security officers have called about his patients 15 to 20 times since 2001.
One elderly couple in a Winnebago were detained last year at a bridge at the Canadian border while trying to return to Michigan from a camping trip. The man recently had been treated with iodine-131 for his thyroid, says Michele Beauvais, director of nuclear pharmacy at William Beaumont Hospital in Royal Oaks, Mich., where the man was treated. The patient showed border guards a card explaining his treatment.
"The guards said, 'Well, you can go, but we have to keep the Winnebago,' " Beauvais says. "It kept setting off the sensors." Guards eventually realized the suspicious signals were coming from the contents of the Winnebago's toilet. "None of the people at the bridge wanted to empty it," Beauvais says, "so they eventually let him go."
...hmmm... I should have an interesting time getting through Orange County and Sacramento Airports on December 10th when I fly home!
By Liz Szabo, USA TODAY
Most seasoned travelers know that their watches and belt buckles can set off airport metal detectors. A new study also shows that patients who have certain medical procedures might themselves set off security sensors designed to find "dirty" bombs or other radioactive weapons.
Patients may emit small amounts of radiation after being treated with radioactive iodine, for example, or after being injected with compounds used in PET scans, bone scans and cardiac stress tests, says Lionel Zuckier, a radiology professor at New Jersey Medical School.
Patients have been treated with "radiopharmaceuticals" for years, and 16 million nuclear medicine procedures are performed each year, according to the Society of Nuclear Medicine. Since 2001, however, doctors say they're hearing about more patients setting off portable radiation detectors used in subways, tunnels and other public places, says Zuckier, who presented his findings Tuesday at the annual meeting of the Radiological Society of North America in Chicago.
Patients injected with a material called FDG before having a PET scan stop emitting a detectable level of radiation within 24 hours. But patients undergoing iodine therapy for thyroid conditions emit radiation for 95 days.
Many doctors say they now provide patients with detailed explanations of their treatments, along with telephone and pager numbers, just in case patients are stopped by security. Chaitanya Divgi, a nuclear medicine specialist at New York's Memorial Sloan-Kettering Cancer Center, says security officers have called about his patients 15 to 20 times since 2001.
One elderly couple in a Winnebago were detained last year at a bridge at the Canadian border while trying to return to Michigan from a camping trip. The man recently had been treated with iodine-131 for his thyroid, says Michele Beauvais, director of nuclear pharmacy at William Beaumont Hospital in Royal Oaks, Mich., where the man was treated. The patient showed border guards a card explaining his treatment.
"The guards said, 'Well, you can go, but we have to keep the Winnebago,' " Beauvais says. "It kept setting off the sensors." Guards eventually realized the suspicious signals were coming from the contents of the Winnebago's toilet. "None of the people at the bridge wanted to empty it," Beauvais says, "so they eventually let him go."
...hmmm... I should have an interesting time getting through Orange County and Sacramento Airports on December 10th when I fly home!
I TALKED TO THE DOCTOR!
Okay... finally the doctor called late yesterday. By the time he called, I had a list of 10 questions. Most of them had been answered by my own online research and by the nice people (other thyroid cancer patients) on the Yahoo Groups ThyCa Forum. So I ran them by the doctor for verification and he said yes, that they were correct. Several ladies from Yahoo Groups replied to me that they thought my scan was GREAT, that it looked normal to them. Keep in mind that most of these people have been through this several times already, so even though they are not doctors - their experience was just as valuable to me. It also helped to ease my mind.
Here it is.. the doctor said "it's a good scan, Christy - those are good results"
... I do wonder why he didn't just SAY THAT into my answering machine instead of rambling on and sounding so weird.
I asked if the uptake in the nasal area could have been from the cold or congestion that I have and he agreed that it could have been as that would not be the kind of place one would find thyroid cancer.
I asked what it meant that there was 'uptake' shown on the scan and he said that they expect to show uptake in the scan.. if there had been no uptake then it would have meant they didn't give me enough I-131. The uptake is where there is still residual thyroid tissue (healthy or cancerous, no way to tell the difference from this). The I-131 is also typically taken up in specific tissues like the thymus (middle upper chest region), breasts, liver, stomach, bowel, urinary tract including the bladder. However, the I-131 will continue to work for a number of months to kill off all thyroid tissue, whether cancerous or healthy. The key here is no "abnormal" uptake outside of those areas!
I inquired why he had made the comment that my case was not as straightforward as most - since no other doctor has referred to me in this way it had confused me. He apologized and explained he said so because I was diagnosed with thyroid cancer while pregnant, which was very uncommon. Thyroid cancer is uncommon enough by itself... he said "you sure had a lot going on at one time!" (agreed).
I asked him if this meant that the cancer could come back eventually. He said yes. That with cancer there are no guarantees of a cure. They expect that this will have taken care of it, and I will continue to be monitored regularly with blood tests and periodic scans like the one I just had. If it starts to show again then they will just take care of it with surgery or another blast or radioactivity.
I'm not worried. I feel like I have been through the worst of this adventure - the unknown - and whatever may happen in the future will not be as devastating as what I have gone through this year.
Thank you, everyone, for your prayers, encouragement and support. It has continued to lift me when I felt like I couldn't even think straight!
Here it is.. the doctor said "it's a good scan, Christy - those are good results"
... I do wonder why he didn't just SAY THAT into my answering machine instead of rambling on and sounding so weird.
I asked if the uptake in the nasal area could have been from the cold or congestion that I have and he agreed that it could have been as that would not be the kind of place one would find thyroid cancer.
I asked what it meant that there was 'uptake' shown on the scan and he said that they expect to show uptake in the scan.. if there had been no uptake then it would have meant they didn't give me enough I-131. The uptake is where there is still residual thyroid tissue (healthy or cancerous, no way to tell the difference from this). The I-131 is also typically taken up in specific tissues like the thymus (middle upper chest region), breasts, liver, stomach, bowel, urinary tract including the bladder. However, the I-131 will continue to work for a number of months to kill off all thyroid tissue, whether cancerous or healthy. The key here is no "abnormal" uptake outside of those areas!
I inquired why he had made the comment that my case was not as straightforward as most - since no other doctor has referred to me in this way it had confused me. He apologized and explained he said so because I was diagnosed with thyroid cancer while pregnant, which was very uncommon. Thyroid cancer is uncommon enough by itself... he said "you sure had a lot going on at one time!" (agreed).
I asked him if this meant that the cancer could come back eventually. He said yes. That with cancer there are no guarantees of a cure. They expect that this will have taken care of it, and I will continue to be monitored regularly with blood tests and periodic scans like the one I just had. If it starts to show again then they will just take care of it with surgery or another blast or radioactivity.
I'm not worried. I feel like I have been through the worst of this adventure - the unknown - and whatever may happen in the future will not be as devastating as what I have gone through this year.
Thank you, everyone, for your prayers, encouragement and support. It has continued to lift me when I felt like I couldn't even think straight!
Wednesday, December 01, 2004
sodium iodide symporters & other information
I am doing research right now and also asking questions to other Thyroid Cancer patients about the information on that report. I understand some of it but not all.
It was explained to me that the I-131 ablation (treatment) will continue to work for a number of months to kill off all thyroid tissue, whether cancerous or healthy. Another lady said that uptake in salivary glands is very normal.
I Just read this online regarding sodium Iodide Symporters "...Other tissues in humans contain sodium iodide symporters: the gastric mucosa, salivary glands, mammary glands, choroid plexus, ovaries, placenta, and skin (Smanik and others 1996~. Breast tis- sue, which contains iodine symporters, can therefore pump iodine into breast milk." http://books.nap.edu/books/030906175X/html/45.html
it's from a report or book titled "Exposure of the American People to Iodine-131 from Nevada Nuclear-Bomb Tests: Review of the National Cancer Institute Report and Public Health Implications" from the National Academies Press
It was explained to me that the I-131 ablation (treatment) will continue to work for a number of months to kill off all thyroid tissue, whether cancerous or healthy. Another lady said that uptake in salivary glands is very normal.
I Just read this online regarding sodium Iodide Symporters "...Other tissues in humans contain sodium iodide symporters: the gastric mucosa, salivary glands, mammary glands, choroid plexus, ovaries, placenta, and skin (Smanik and others 1996~. Breast tis- sue, which contains iodine symporters, can therefore pump iodine into breast milk." http://books.nap.edu/books/030906175X/html/45.html
it's from a report or book titled "Exposure of the American People to Iodine-131 from Nevada Nuclear-Bomb Tests: Review of the National Cancer Institute Report and Public Health Implications" from the National Academies Press
What the Report Says
I went to the hospital and got a copy of the ACTUAL post RAI report so I will know exactly what it said:
"Uptake is seen in the lower neck presumably in the area of the thyroid and there is lesser area of uptake above that, likely also in the thyroid bed. A fair amount of uptake is seen in the salivary glands and there is some asymmetry with uptake on the left probably in the nasal sinus. Some bilateral uptake is seen in the breasts likely due to the sodium iodide symporters. No areas of abnormal uptake are seen in the chest, abdomen or pelvis."
I know that the fact there there were no areas of abnormal uptake elsewhere is a good thing...
but is the rest good, bad or indifferent?
"Uptake is seen in the lower neck presumably in the area of the thyroid and there is lesser area of uptake above that, likely also in the thyroid bed. A fair amount of uptake is seen in the salivary glands and there is some asymmetry with uptake on the left probably in the nasal sinus. Some bilateral uptake is seen in the breasts likely due to the sodium iodide symporters. No areas of abnormal uptake are seen in the chest, abdomen or pelvis."
I know that the fact there there were no areas of abnormal uptake elsewhere is a good thing...
but is the rest good, bad or indifferent?
Waiting to Talk to a Doctor on the Phone - need some answers!
Now it's Wednesday...
So yesterday's 'waiting for answers' only panned out confusion for me. I am trying again today. Early this morning I placed calls to both the Chico doc's office and also to the doc here at Hoag (the one that administered the treatment) & left messages requesting a phone consultation. I just want to ask some questions.
What does all that stuff mean? Could someone please explain in plain layman's English so I can comprehend what is going on in my body? LOL. It really doesn't seem like too much to ask.
I am making plans to go to the records department of the hospital this morning and pick up a copy of the actual report so I can have it with me and in front of me when a doctor calls.
So yesterday's 'waiting for answers' only panned out confusion for me. I am trying again today. Early this morning I placed calls to both the Chico doc's office and also to the doc here at Hoag (the one that administered the treatment) & left messages requesting a phone consultation. I just want to ask some questions.
What does all that stuff mean? Could someone please explain in plain layman's English so I can comprehend what is going on in my body? LOL. It really doesn't seem like too much to ask.
I am making plans to go to the records department of the hospital this morning and pick up a copy of the actual report so I can have it with me and in front of me when a doctor calls.
Tuesday, November 30, 2004
Scan Results, kind of confusing
Would you expect anything less than confusing for me?
I waited and waited for the doctor's call. It never came. Suddenly it occurred to me that maybe they called my home phone! So I called home and played back all the messages, unfortunately there were two weeks of phone messages which had not been deleted so I had to listen to all of them FIRST... it took 12 minutes.
Last call was from the doctor who is filling in for my Radiation Oncologist this week. He indicated that my "case is not as straight-forward" as most... The radiologist that read the pictures indicated that there was some uptake in the thyroid bed which was to be expected. Also there was some uptake in the nose(?) but he may have said nodes (it is hard to understand when listening to the messages via my cellphone) - he said that radiologist was not sure whether or not this was 'significant'. He said "things look about as well as can be expected" (what the heck does that mean?)
He didn't mention any other areas of involvement and said "all and all things look great."
He said I can call the office tomorrow, he won't be in but I can talk to one of the other doctors. Basically that means that I can call back, leave a message and wait all day for someone to call me again.
I almost wish I hadn't heard the phone message. All it has done was given me more questions.
At least he didn't say that they want me to come in to discuss it - that would have meant bad news (in my opinion)
I waited and waited for the doctor's call. It never came. Suddenly it occurred to me that maybe they called my home phone! So I called home and played back all the messages, unfortunately there were two weeks of phone messages which had not been deleted so I had to listen to all of them FIRST... it took 12 minutes.
Last call was from the doctor who is filling in for my Radiation Oncologist this week. He indicated that my "case is not as straight-forward" as most... The radiologist that read the pictures indicated that there was some uptake in the thyroid bed which was to be expected. Also there was some uptake in the nose(?) but he may have said nodes (it is hard to understand when listening to the messages via my cellphone) - he said that radiologist was not sure whether or not this was 'significant'. He said "things look about as well as can be expected" (what the heck does that mean?)
He didn't mention any other areas of involvement and said "all and all things look great."
He said I can call the office tomorrow, he won't be in but I can talk to one of the other doctors. Basically that means that I can call back, leave a message and wait all day for someone to call me again.
I almost wish I hadn't heard the phone message. All it has done was given me more questions.
At least he didn't say that they want me to come in to discuss it - that would have meant bad news (in my opinion)
Waiting for Scan Results
I called the Nuclear Medicine Department at Hoag Hospital this morning to inquire about the results from my scan. The report is "in"... but it is being mailed to my doctor in Chico! UGH!! So I asked them to please fax a copy right away (this morning) and that is now being done. Then I called my doc's office in Chico and naturally, he is not there this week. hahahahaha! So I asked that whomever is seeing his patients would please call me as soon as they receive the fax and read the report. I explained that I am on pins and needles here and want to know the results as soon as possible since it's been such a long drawn-out journey to even get to this point.
Will post results as soon as I know.
Will post results as soon as I know.
Whole Body Scan (a.k.a. WBS)
Well, I made it through the whole body scan (MRI), it was easy except that they tell you, "Okay now this object is going to be right above your face for about 10 minutes and you have to hold COMPLETELY STILL..." which is when my pinky toe starts to twitch or itch or my neck is cramped from holding in place so long for the first half of the scan. hahahah!! But I was a good girl. I didn't move and they didn't have to re-do any pictures.
Now I get to wait two days and make phone calls to find out which doctor I talk to so I can get some answers.
Now I get to wait two days and make phone calls to find out which doctor I talk to so I can get some answers.
Sunday, November 28, 2004
"Who You Are" by Lanette Fernandez
This one came in my daily inspirational email from MountainWings.com
"Who You Are"
============
I find myself on the downhill slide of yet another trial in my life where confusion seemed to be the only thing I was sure of.
Who, what, why, when, how, and how long were the questions I didn't have answers for. Last night, I sat quietly and instead of asking, I just listened. God whispered to me.
Who I am is a child of His. What I am is a wife and mother. Why is something we can only figure out as we go along.When is always and can never be more than right here and right now (live for today). How is only with His help, and how long depends mostly on us. He explained to me that I am who and what I am (don't try to be any more or any less) therefore I need to do and be the best that I can at all times.
I get discouraged, but I also have the ability to inspire and be inspired. I become sad sometimes, but I can also experience joy. I can become angry, but I have the heart to console. I need to be forgiven sometimes (a lot) but I can also forgive. I feel helpless at times, but can still lend a hand or ear to help others. I am a teacher, but I still have much to learn. I get confused, but deep down I know the answers are within my grasp. It is the same grasp that boldly lifts my hands to Heaven, and gently brings me to my knees. Sometimes I feel lost, but that is merely an illusion because it is not only enough for my Father to know where I am and exactly what I am going through, He has every hair on my head numbered.
Life is a series of lessons to be learned. That is the only way we can grow. I wish I had all the answers, but sometimes I think (I know) the only way for us to become stronger and grow into what He wants us to be, is to walk through the fire. So, whatever you're going through, hold your head up, guard your heart, and put all your faith and trust in the only ONE who will never fail you....... JESUS.......
Remember all the things you can be even when you are sometimes those things you wish you weren't.
~ Lanette Fernandez, Wyoming
"Who You Are"
============
I find myself on the downhill slide of yet another trial in my life where confusion seemed to be the only thing I was sure of.
Who, what, why, when, how, and how long were the questions I didn't have answers for. Last night, I sat quietly and instead of asking, I just listened. God whispered to me.
Who I am is a child of His. What I am is a wife and mother. Why is something we can only figure out as we go along.When is always and can never be more than right here and right now (live for today). How is only with His help, and how long depends mostly on us. He explained to me that I am who and what I am (don't try to be any more or any less) therefore I need to do and be the best that I can at all times.
I get discouraged, but I also have the ability to inspire and be inspired. I become sad sometimes, but I can also experience joy. I can become angry, but I have the heart to console. I need to be forgiven sometimes (a lot) but I can also forgive. I feel helpless at times, but can still lend a hand or ear to help others. I am a teacher, but I still have much to learn. I get confused, but deep down I know the answers are within my grasp. It is the same grasp that boldly lifts my hands to Heaven, and gently brings me to my knees. Sometimes I feel lost, but that is merely an illusion because it is not only enough for my Father to know where I am and exactly what I am going through, He has every hair on my head numbered.
Life is a series of lessons to be learned. That is the only way we can grow. I wish I had all the answers, but sometimes I think (I know) the only way for us to become stronger and grow into what He wants us to be, is to walk through the fire. So, whatever you're going through, hold your head up, guard your heart, and put all your faith and trust in the only ONE who will never fail you....... JESUS.......
Remember all the things you can be even when you are sometimes those things you wish you weren't.
~ Lanette Fernandez, Wyoming
Saturday, November 27, 2004
I Refuse to Stay Sick
I am already starting to feel better! That tonic stuff tastes horrible but it sure works if you take a lot of it in the first 24 hours. Most of the bronchitis symptoms are gone.
My adventure in thyroid withdrawal and RAI treatment.. the short story
(this entry was actually an email reply to someone I had forgotten to 'update' on the latest with me, but am including it here as it might fill in the blanks for some of you as well)
Oh I am doing okay so far. As ever, there was still a lot of confusion or should I say a lack of agreement as far as how long I should stay away from Leila. My doc in Chico (where I live) said basically to stay away from her for 7-11 days totally and then to spend time with her during the day afterwards at varying degrees of proximity. The doctors here in southern California where I was treated with the RAI had the usual cavalier attitude.... just stay away from babies and pregnant women for 7 days. flush 3 times and launder seperately for the first 4 days.
They gave me 98.4 millicuries which I asked why it wasn't 100 mci? They said that as long as it is within 10% of the "dose" it still counts as the full dose.....I said "okay... that is weird", but what the hell do I know about radioactive iodine.
I didn't get a whole body scan (WBS) before treatment. they said they don't do that here as a rule... that they were giving me the dose or RAI no matter what an WBS would show. so much for hoping for that miracle from God saying I wouldn't need the RAI after all. hahahah pardon my sarcasm, it is keeping me relatively sane. I will get my WBS Mon Nov 29th. I have no idea what it entails, how long it takes, if it is an MRI etc... as usual they are keeping me in the dark until the day of the procedure. I have long since given up the idea of control in my life otherwise I would be looking for someone's butt to chew.
the whole hypothyroid roller coast was HELL...!! it was everything I had read about online from all the other people who had been through it - about the neurotic feelings, dropping things, standing in front of the refrigerator for 10 minutes looking for the hairbrush, losing the train of thought in the middle of a conversation. I said my brain became like an etch-a-sketch - all nice and pretty one minute and a blank screen the next. Interestingly enough the tendonitis in my thumbs which was very painful went away when I was on NO Levoxyl. So it confirms what I thought which that either I can't tolerate high doses of levoxyl or that just having high doses of synthetic thyroid in my system does not agree with my joints and tendons since I end up in chronic achy feelings in all kinds of places.
Then there is the low-iodine diet a.k.a welcome to the "land of bland". My doc at home was sort of ... well, he didn't seem to think it mattered whether or not I did the low iodine diet before treatment!! I didn't believe that. I chatted with too many other thyca patients on yahoo groups to know that it IS important to help assure a better treatment, especially the first time. I like my doctor and all, but he also didn't take me off of the thyroid meds early enough. So when I got here they tested my TSH and it was only 1.8. Not high enough to give me the RAI. I had to WAIT ANOTHER WEEK!! Another week on that diet too. I was ready to go ballistic on someone, I tell ya. I exercised a lot of self control and did alot of praying for strength and acceptance. Unfortunately I live in a small community and my alternatives for treatments and doctors are very limited unless I travel 3 hours to San Francisco every time.
The doc here that gave me the RAI told me I could start taking the Levoxyl the morning following treatment and I sure did. 175mcg Levoxyl which made me extremely dizzy and achy for the first 4 days after I started taking it. I guess it was a shock to my system. Howoever it has been 10 days on it and I already feel better, not as heady and weird, not as forgetful and certainly NOT AS TIRED! hallelujah. When I get home I will consult with the internist, not the radiation oncologist, about my correct dosage because I don't think I should be on such a high dose for a long period of time or it could bring on heart problems and osteoporosis. Just what I don't need.
Oh I am doing okay so far. As ever, there was still a lot of confusion or should I say a lack of agreement as far as how long I should stay away from Leila. My doc in Chico (where I live) said basically to stay away from her for 7-11 days totally and then to spend time with her during the day afterwards at varying degrees of proximity. The doctors here in southern California where I was treated with the RAI had the usual cavalier attitude.... just stay away from babies and pregnant women for 7 days. flush 3 times and launder seperately for the first 4 days.
They gave me 98.4 millicuries which I asked why it wasn't 100 mci? They said that as long as it is within 10% of the "dose" it still counts as the full dose.....I said "okay... that is weird", but what the hell do I know about radioactive iodine.
I didn't get a whole body scan (WBS) before treatment. they said they don't do that here as a rule... that they were giving me the dose or RAI no matter what an WBS would show. so much for hoping for that miracle from God saying I wouldn't need the RAI after all. hahahah pardon my sarcasm, it is keeping me relatively sane. I will get my WBS Mon Nov 29th. I have no idea what it entails, how long it takes, if it is an MRI etc... as usual they are keeping me in the dark until the day of the procedure. I have long since given up the idea of control in my life otherwise I would be looking for someone's butt to chew.
the whole hypothyroid roller coast was HELL...!! it was everything I had read about online from all the other people who had been through it - about the neurotic feelings, dropping things, standing in front of the refrigerator for 10 minutes looking for the hairbrush, losing the train of thought in the middle of a conversation. I said my brain became like an etch-a-sketch - all nice and pretty one minute and a blank screen the next. Interestingly enough the tendonitis in my thumbs which was very painful went away when I was on NO Levoxyl. So it confirms what I thought which that either I can't tolerate high doses of levoxyl or that just having high doses of synthetic thyroid in my system does not agree with my joints and tendons since I end up in chronic achy feelings in all kinds of places.
Then there is the low-iodine diet a.k.a welcome to the "land of bland". My doc at home was sort of ... well, he didn't seem to think it mattered whether or not I did the low iodine diet before treatment!! I didn't believe that. I chatted with too many other thyca patients on yahoo groups to know that it IS important to help assure a better treatment, especially the first time. I like my doctor and all, but he also didn't take me off of the thyroid meds early enough. So when I got here they tested my TSH and it was only 1.8. Not high enough to give me the RAI. I had to WAIT ANOTHER WEEK!! Another week on that diet too. I was ready to go ballistic on someone, I tell ya. I exercised a lot of self control and did alot of praying for strength and acceptance. Unfortunately I live in a small community and my alternatives for treatments and doctors are very limited unless I travel 3 hours to San Francisco every time.
The doc here that gave me the RAI told me I could start taking the Levoxyl the morning following treatment and I sure did. 175mcg Levoxyl which made me extremely dizzy and achy for the first 4 days after I started taking it. I guess it was a shock to my system. Howoever it has been 10 days on it and I already feel better, not as heady and weird, not as forgetful and certainly NOT AS TIRED! hallelujah. When I get home I will consult with the internist, not the radiation oncologist, about my correct dosage because I don't think I should be on such a high dose for a long period of time or it could bring on heart problems and osteoporosis. Just what I don't need.
Thursday, November 25, 2004
HAPPY THANKSGIVING EVERYONE!
This year I am happy to be alive. I am also happy I will see my Leila today. She is going to get a chance to meet many relatives who have only seen her in pictures so far, it’ll be nice.
I have two Thanksgiving events to go to, which will mean too much eating followed by a much-needed turkey induced NAP.
Well I do believe I have bronchitis since I now have the congestion I was wondering about yesterday. No problem since I started taking Echinacea and Goldenseal at the onset of symptoms and then started drinking Echinacea Ginger Tonic today (which tastes horrible, yuck).
I have two Thanksgiving events to go to, which will mean too much eating followed by a much-needed turkey induced NAP.
Well I do believe I have bronchitis since I now have the congestion I was wondering about yesterday. No problem since I started taking Echinacea and Goldenseal at the onset of symptoms and then started drinking Echinacea Ginger Tonic today (which tastes horrible, yuck).
Tuesday, November 23, 2004
New Symptoms
Now a new symptom/side effect I am wondering about. I have had - for the last two days - what feels like throat congestion. I keep dry-coughing as though I could rid myself of phlegm but, alas, nothing comes up or out! I definitely feel a tightness in my throat when I inhale through my mouth. I am definitely hoarse sounding. Exhaling does not produce the tight feeling. There does not appear to be anything in my lungs as far as congestion goes (I can't feel it, let me put it that way). Anyhow I posted this inquiry to the Yahoo Group for Thyroid Cancer survivors... It would help me to know if I need to find a quick care place to go to or if I should just hang in there and let it pass normally. I am thinking it might be swollen glands in my throat or neck, is that a possibility?
I am 500 miles from home for treatment for thyroid cancer, and sort of hanging by a thread. My doc at home defers to the doc here who defers back to my doc at home so I don't get any real answers or help. It is an endless maddening cycle for me, in this time when I really need some stability. I don't have an endo, there are none in my area who will take my insurance so I am being treated by a radiation oncologist. So far I have managed to get the RAI and am supposed to have a WBS on Nov 29th. In the meantime I am trying diligently to take care of myself and not freak out over every little detail since no one in the medical profession wants to answer my questions!
I am 500 miles from home for treatment for thyroid cancer, and sort of hanging by a thread. My doc at home defers to the doc here who defers back to my doc at home so I don't get any real answers or help. It is an endless maddening cycle for me, in this time when I really need some stability. I don't have an endo, there are none in my area who will take my insurance so I am being treated by a radiation oncologist. So far I have managed to get the RAI and am supposed to have a WBS on Nov 29th. In the meantime I am trying diligently to take care of myself and not freak out over every little detail since no one in the medical profession wants to answer my questions!
Monday, November 22, 2004
Baby Girl
Good-day,
I have been able to see my little precious baby twice, but have stayed a cautious six feet away. That's hard to do when she is laying there trying to talk, making all those cute little baby sounds. The last two days she was really "going to town" almost like she is excited to hear her own voice and she erupts into a smile so easily when anyone tells her she is a "pretty girl". Just warms the heart.
My next big event is Thanksgiving with the family! I have two events to go to, I will probably be worn out after the first one. I have noticed that after a few hours of functioning that I become very lethargic.
I try not to push it too much, just take my time and relax with a book or a magazine if I am unable to sleep (which is often).
The side effects of the treatment are weird. there were those immediate effects which came along in the first hours and then over the next few days. Now I am a week past treatment and new stuff is coming along!
I have been able to see my little precious baby twice, but have stayed a cautious six feet away. That's hard to do when she is laying there trying to talk, making all those cute little baby sounds. The last two days she was really "going to town" almost like she is excited to hear her own voice and she erupts into a smile so easily when anyone tells her she is a "pretty girl". Just warms the heart.
My next big event is Thanksgiving with the family! I have two events to go to, I will probably be worn out after the first one. I have noticed that after a few hours of functioning that I become very lethargic.
I try not to push it too much, just take my time and relax with a book or a magazine if I am unable to sleep (which is often).
The side effects of the treatment are weird. there were those immediate effects which came along in the first hours and then over the next few days. Now I am a week past treatment and new stuff is coming along!
Friday, November 19, 2004
The Feeling of Disappointment
Several people made promises to come see me and keep me company but everyone has come up with excuses why they can’t, so I am sitting here feeling very disappointed in them. I am tired of always being available for my friends who somehow come up with excuses of why they can’t be there for me when I need them (which is RARELY).
At least I have my family. They have not let me down!
This being secluded from the rest of the world is horrible. How can people stand this for long periods of time? Even if I don’t feel like talking to people, I can usually go sit in a coffee shop or a movie theater alone – but not right now. UGH!
At least I have my family. They have not let me down!
This being secluded from the rest of the world is horrible. How can people stand this for long periods of time? Even if I don’t feel like talking to people, I can usually go sit in a coffee shop or a movie theater alone – but not right now. UGH!
Wednesday, November 17, 2004
ANSWERS TO YOUR QUESTIONS
I have received several phone calls and email inquiries from my friends and family asking about how everything works and how many chemo treatments I am getting, etc. I am not getting radiation or chemotherapy! This is a one-treatment deal. Thyroid cancer is rare, only about 20,000 people a year are diagnosed (representing about 1 percent of all cancers), which means the treatment is different from conventional cancer treatments like chemo and radiation.
The I-131 (radioactive iodine) is what was found in nuclear fallout from the above-ground testing in Nevada also at places like Hiroshima and Chernobyl. It destroys thyroid cells and can cause cancer (including Leukemia and Lymphoma). For those people whose thyroid gland has been removed, a high dose is used to kill thyroid cancer cells remaining anywhere in the body. This high dose given to me can only be given once every six months, but if it works the first time I may not have to repeat unless the cancer comes back years down the road. It is very toxic which is why it's not given in several doses for weeks at a time( like chemo or radiation) and why I have to remain a safe distance from people for the first week following treatment.
Basically I took this pill which was delivered to me in a lead container, you know, with all the "RADIOACTIVE - CAUTION" stickers everywhere. Talk about a controlled substance! Then they made me stand at the door, held a yardstick to me and measured with a Geiger counter to measure the amount of radiation emanating from my body. I was then sent home to where I am staying with explicit instructions about exposing others. I am kind of like the boy in a bubble right now... in two weeks I go back to the hospital for a whole body scan (probably MRI) to see what happened with the treatment, to see if there are any hot spots or cancer showing up anywhere. I am praying for a clean scan.
Leila is with my mom. I cannot see her at all for one whole week, afterwards I can spend time with her during the day but not get real close or hold her for a few weeks. After three weeks I am basically considered ok to hold my baby near me again.
At this time I wear rubber gloves while typing on the computer so that I don't leave radioactive waste on it. I have to use plastic utensils and plates for the first week and wash my laundry separately. 24hrs after treatment I was able to resume my regular eating habits, what a tremendous relief!
Tuesday, November 16, 2004
The Day After Treatment
I felt kind of sick most of today. Nauseated and really exhausted. Definitely worse than yesterday but I was expecting that to be the case! The order of the day is read, sleep, read some more, check email and sleep!
I'm feeling a little better tonight, I am ready to tackle a big fat burrito with hot sauce ....ahhhhh... three weeks on a special plain diet was hell, I'll tell ya.
I'm feeling a little better tonight, I am ready to tackle a big fat burrito with hot sauce ....ahhhhh... three weeks on a special plain diet was hell, I'll tell ya.
Monday, November 15, 2004
Treatment Day! YEAH!
Helllloooooo from sunny southern California!
Okay I survived the wait of the extra week until I could get my thyroid cancer treatment. I'll tell you, that really was the WORST of it so far. Going in - heart and mind set to get it done and move on, only to be told "no, your body is not ready yet ... come back next week and we will try again." Aaaaaaaaaaaaaack! I do believe my theme song for this period was "Anticipation"
For lunch today I swallowed two blue pills containing a total of 100 millicuries of radioactive iodine. They were brought to me in a lead container with radioactive-warning labels on it, inside were plastic vials containing the radioactive iodine pills. The pills were metallic blue and sort of heavy feeling. YUM!! Actually I was so happy they even allowed me to do it today that I almost jumped out of the chair to hug the doctor and physicist. Of course then they would have sent me to the psych ward via those nice young men in their clean white coats. hahahahah. They didn't make me stay in the hospital - it was all done outpatient style. Just like a drive thru, if you think about it. "Welcome to Nuclear Medicine, may I take your order? Just swallow these two pills and think nice thoughts about your cancer cells dying the miserable death they deserve… Thank you, have a nice day!"
When I came home I felt fine. After about an hour I began to feel extremely tired and cold, so I took a nap for a few hours. Now I just feel the need to let everyone know that I am okay and going through the radioactive adventure. Basically I just wait for the stuff to get through my system and do its job. It will ablate or kill any remaining thyroid cancer cells and eventually dissipate from my body. For the first week I will have to remain a safe distance from people and stay away from children, including my own (sadly). Also cannot eat out at restaurants or go to the movies, for the safety of others and to make sure I get nice and bored. I have the laptop with me and am so far successfully typing this with latex gloves on so I don't leave any radioactive residue that might come out of my pores on the keyboard.
I will be able to chat on yahoo messenger, if you have it. Look for me to be online. I appreciate email, you will probably get an auto reply at first but I will do my best to keep up with all of you.
Okay I survived the wait of the extra week until I could get my thyroid cancer treatment. I'll tell you, that really was the WORST of it so far. Going in - heart and mind set to get it done and move on, only to be told "no, your body is not ready yet ... come back next week and we will try again." Aaaaaaaaaaaaaack! I do believe my theme song for this period was "Anticipation"
For lunch today I swallowed two blue pills containing a total of 100 millicuries of radioactive iodine. They were brought to me in a lead container with radioactive-warning labels on it, inside were plastic vials containing the radioactive iodine pills. The pills were metallic blue and sort of heavy feeling. YUM!! Actually I was so happy they even allowed me to do it today that I almost jumped out of the chair to hug the doctor and physicist. Of course then they would have sent me to the psych ward via those nice young men in their clean white coats. hahahahah. They didn't make me stay in the hospital - it was all done outpatient style. Just like a drive thru, if you think about it. "Welcome to Nuclear Medicine, may I take your order? Just swallow these two pills and think nice thoughts about your cancer cells dying the miserable death they deserve… Thank you, have a nice day!"
When I came home I felt fine. After about an hour I began to feel extremely tired and cold, so I took a nap for a few hours. Now I just feel the need to let everyone know that I am okay and going through the radioactive adventure. Basically I just wait for the stuff to get through my system and do its job. It will ablate or kill any remaining thyroid cancer cells and eventually dissipate from my body. For the first week I will have to remain a safe distance from people and stay away from children, including my own (sadly). Also cannot eat out at restaurants or go to the movies, for the safety of others and to make sure I get nice and bored. I have the laptop with me and am so far successfully typing this with latex gloves on so I don't leave any radioactive residue that might come out of my pores on the keyboard.
I will be able to chat on yahoo messenger, if you have it. Look for me to be online. I appreciate email, you will probably get an auto reply at first but I will do my best to keep up with all of you.
Words of Encouragement
I am grateful for the reminder in these words of wisdom that my sister Sarah emailed to me this morning...
"I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life. I've learned that making a "living" is not the same thing as making a "life." I've learned that life sometimes gives you a second chance. I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back. I've learned that whenever I decide something with an open heart, I usually make the right decision. I've learned that even when I have pains, I don't have to be one. I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I've learned that I still have a lot to learn. I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."
-- Maya Angelou
"I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life. I've learned that making a "living" is not the same thing as making a "life." I've learned that life sometimes gives you a second chance. I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back. I've learned that whenever I decide something with an open heart, I usually make the right decision. I've learned that even when I have pains, I don't have to be one. I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I've learned that I still have a lot to learn. I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."
-- Maya Angelou
Wednesday, October 27, 2004
Everyone keeps asking where I am? I wish I knew...
Sorry I have been incommunicado...as Jimmy Buffett says....if your phone doesn't ring, it's me! LOL. I have basically felt like crap, the doctor had me stop taking all of my meds in preparation for the I-131 treatment and now I am on a special low-iodine diet too. I am on the emotional roller coaster from hell and I ache everywhere. oh yeah and my hair is falling out, like 50 or 60 strands every time I wash it and then everytime I brush it. Maybe I should just let it get dirty and greasy and it will just stay in place? hahaha. I guess that's why I haven't been emailing anyone. There is nothing good to say other than this nightmare is almost over. At least the hard part... for now.
Leila is my reason for waking up every day and she makes me smile when I don't feel like it. She is just fabulous and healthy - thank God! She is still cooing a lot and I swear somedays she is on the verge of saying something, but I know its way too soon. She is 24" long now and probably around 12lbs.
Leila is my reason for waking up every day and she makes me smile when I don't feel like it. She is just fabulous and healthy - thank God! She is still cooing a lot and I swear somedays she is on the verge of saying something, but I know its way too soon. She is 24" long now and probably around 12lbs.
Sunday, September 19, 2004
CANCER IS SO LIMITED........
A little something about cancer sent to me from my mother and father-in-law (thanks!):
CANCER IS SO LIMITED........
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot eat away peace,
It cannot destroy confidence,
It cannot kill friendship,
It cannot shut out memories,
It cannot silence courage,
It cannot invade the soul,
It cannot reduce eternal life,
It cannot quench the spirit,
It cannot lessen the power of the resurrection.
CANCER IS SO LIMITED........
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot eat away peace,
It cannot destroy confidence,
It cannot kill friendship,
It cannot shut out memories,
It cannot silence courage,
It cannot invade the soul,
It cannot reduce eternal life,
It cannot quench the spirit,
It cannot lessen the power of the resurrection.
Friday, August 13, 2004
Baby Leila Arrives
Announcing the arrival of our lovely Little Miss:
LEILA
August 9th
7:44AM
7lbs 13oz.
21 1/2" long
Baby's birthday went off without a hitch. My whole family was here, so we were totally surrounded with love and prayers. The c-section went well - and it was so fast - about 30 minutes total (thank God). After delivery, Leila's breathing was a bit labored at first because of the type of delivery, c-section babies have a tendency to swallow amniotic fluid and have to work harder to clear their lungs. This just meant a short time in the nursery where she could be monitored. She recovered very quickly after lots of long loud cries (she wanted to be with her mommy!). She was brought to my recovery room where our visitors were able to come in two at a time. We all got to watch the nurse giver her the first bath after which she was handed to me for loving hugs and breastfeeding. The staff of Enloe Hospital did a fabulous job - the nurses are top-notch and really went the extra mile to make us comfortable.
Baby's birthday went off without a hitch. My whole family was here, so we were totally surrounded with love and prayers. The c-section went well - and it was so fast - about 30 minutes total (thank God). After delivery, Leila's breathing was a bit labored at first because of the type of delivery, c-section babies have a tendency to swallow amniotic fluid and have to work harder to clear their lungs. This just meant a short time in the nursery where she could be monitored. She recovered very quickly after lots of long loud cries (she wanted to be with her mommy!). She was brought to my recovery room where our visitors were able to come in two at a time. We all got to watch the nurse giver her the first bath after which she was handed to me for loving hugs and breastfeeding. The staff of Enloe Hospital did a fabulous job - the nurses are top-notch and really went the extra mile to make us comfortable.
Monday, July 26, 2004
Going for a second opinion
My OB/Gyn referred me to two new doctors (an Internal Med Specialist & an Oncologist), one I saw last week wants me to NOT WAIT to have the radioactive iodine treatment,, he wants me to have it as soon as I can after the baby's birth (probably one month after) and I am a little scared about it.
I am waiting for the other doc's office to call - my OB wanted me to get more opinions on treatment because he ALSO personally thinks its better not to wait a couple of months! This just makes things more difficult, going through RAI with a one month old baby and having to be away from her for a week after treatment. So it looks like sooner rather than later. I will get about 4-6 weeks off meds to get my TSH levels high enough to uptake the radioactive iodine, breastfeed my baby as much as possible in that time and recover from c-section. oh boy, how is that for a menu?
Sunday, May 02, 2004
What is RAI or I-131?
Here is some info on the RAI therapy to better clear it up for you: 'RAI' is short for Radioactive Iodine or I-131. "Thyroid cells are unique in that they have the cellular mechanism to absorb iodine. The iodine is used by thyroid cells to make thyroid hormone. No other cell in the body can absorb or concentrate iodine. Physicians can take advantage of this fact and give radioactive iodine to patients with thyroid cancer. There are several types of radioactive iodine, with one type being toxic to cells. Papillary cancer cells absorb iodine and therefore they can be targeted for death by giving the toxic isotope (I-131). Once again, not everybody with papillary thyroid cancer needs this therapy, but those with larger tumors, spread to lymph nodes or other areas, tumors which appear aggressive microscopically, and older patients may benefit from this therapy."
I had a large tumor, over 1.5cm plus several other small tumors which HAVE metastasized to my lymph nodes, this means I might still have cancer. Removing the thyroid gland alone is not enough once it has spread from that area. Unfortunately all the doctors I have seen in the last 7 years never thought it necessary to pursue other testing or treatment and I didn't know any better since I didn't have symptoms to speak of.... if they had, my life today and my cancer experience would have been leagues different. That depresses me and makes me sick at my stomach everytime I think about it.
Anyhow they have to give me the RAI to make sure to kill the cancer cells that might still be in there.
I just read a disturbing article that came out April 27th regarding potential neural development difficulties for children born to women with Hashimoto's or thyroid issues.... it is from the American Thyroid Assoc, a legit organization. So the theory of waiting until after baby is born to remove these potential problems is going to be an old-fashioned theory someday real soon.... another reason I am glad I listened to my instincts. I can only pray that my baby won't be damaged in some way from my messed up body. Makes me sick.
I hope my docs know what they are doing too. I am reading constantly to educate myself on these issues so I will know that what they are doing is correct protocol and also so I will ask the right questions, ask for the right tests, etc. I have already requested one blood test I will get next week that my doc would not have suggested, I explained why and he agreed and ordered it up. I have already purchased two recently published books which are sold by subscription only to doctors and researchers. I am half way through the first one.
I had a large tumor, over 1.5cm plus several other small tumors which HAVE metastasized to my lymph nodes, this means I might still have cancer. Removing the thyroid gland alone is not enough once it has spread from that area. Unfortunately all the doctors I have seen in the last 7 years never thought it necessary to pursue other testing or treatment and I didn't know any better since I didn't have symptoms to speak of.... if they had, my life today and my cancer experience would have been leagues different. That depresses me and makes me sick at my stomach everytime I think about it.
Anyhow they have to give me the RAI to make sure to kill the cancer cells that might still be in there.
I just read a disturbing article that came out April 27th regarding potential neural development difficulties for children born to women with Hashimoto's or thyroid issues.... it is from the American Thyroid Assoc, a legit organization. So the theory of waiting until after baby is born to remove these potential problems is going to be an old-fashioned theory someday real soon.... another reason I am glad I listened to my instincts. I can only pray that my baby won't be damaged in some way from my messed up body. Makes me sick.
I hope my docs know what they are doing too. I am reading constantly to educate myself on these issues so I will know that what they are doing is correct protocol and also so I will ask the right questions, ask for the right tests, etc. I have already requested one blood test I will get next week that my doc would not have suggested, I explained why and he agreed and ordered it up. I have already purchased two recently published books which are sold by subscription only to doctors and researchers. I am half way through the first one.
Friday, April 30, 2004
Pregnancy Complications and Thyroid
By the way, there is a brand new publication out regarding "Pregnancy Complications and Deficits in Infant and Child Intellectual Development Are Focus of New ATA Statement and Discussion at Symposium on Thyroid Health in Pregnant Women" (click on the title of this post to read it).
Anyhow, that is about it for now. I am trying to stay focused on this baby. I pray for her safety through all of this chaos my body has gone through recently and during my entire pregnancy.
Why I don't trust any Doctor Anymore...
As mentioned, I ended up with a respiratory infection of some kind while I was in the hospital after surgery. Nobody in there would treat me for it, they kept dismissing it as side effects of my surgery so I had to wait until after I was released to go to a clinic and get some antibiotics. WHAT A JOKE! In general I am feeling much better after 10 days of amoxicillin for the upper respiratory issue. That really made healing worse for me since I was constantly coughing (painful) and badly congested making it hard to breathe at times. I haven't had problems getting around or doing things around the house at all. I just get tired easily. Probably a combination of pregnancy, surgery recovery and thyroid meds!
My incision area is healing nicely, I have been putting vitamin E on it and it looks pretty good. Doc told me to buy Mederma for scarring, I prefer natural stuff and can't afford non-prescription medicine right now anyway. He gave me a sample, and I do mean it was one measly little sample...wooohooo.
I left a message for my radiation oncologist to ask if, based on path reports post surgery etc, would he want me to do the RAI earlier rather than waiting say 6 months or so? I am not really happy right now and trying to determine how to deal with this. In reply he had his assistant call and find out what kind of meds I am taking, and when I am having blood tests and then had her tell me that he just wants me to wait until after the baby is born before he will determine my treatment protocol. I tried diligently to explain to the assistant that I am 500 miles away from family and help, and does he really want me to make decisions post-partum with a newborn in hand....?? etc... she says, “yes just make an appt to see him after your baby is born”. I am feeling very aggravated by this. I told her I need to make plans well in advance to get someone up here to help me, if he wants me to have treatment 3 weeks after birth, that won't be enough time. She didn't seem very sympathetic. I feel like a sheet in the wind somedays. just blown back and forth.
I am now reading medical journals, publications and textbooks so I better understand all about thyroid cancer and treatments. I figure if I don't educate myself on this, how will I know if my doctors are doing what is best for me? I find it hard to just "trust" all of them now... knowing that this cancer has grown in me for years undiagnosed by several doctors who told me, "go home, you are fine". hahahaha. the path report post surgery also diagnosed me with chronic thyroiditis, Hashimoto's. How about that? none of those doctors noticed that either!
My incision area is healing nicely, I have been putting vitamin E on it and it looks pretty good. Doc told me to buy Mederma for scarring, I prefer natural stuff and can't afford non-prescription medicine right now anyway. He gave me a sample, and I do mean it was one measly little sample...wooohooo.
I left a message for my radiation oncologist to ask if, based on path reports post surgery etc, would he want me to do the RAI earlier rather than waiting say 6 months or so? I am not really happy right now and trying to determine how to deal with this. In reply he had his assistant call and find out what kind of meds I am taking, and when I am having blood tests and then had her tell me that he just wants me to wait until after the baby is born before he will determine my treatment protocol. I tried diligently to explain to the assistant that I am 500 miles away from family and help, and does he really want me to make decisions post-partum with a newborn in hand....?? etc... she says, “yes just make an appt to see him after your baby is born”. I am feeling very aggravated by this. I told her I need to make plans well in advance to get someone up here to help me, if he wants me to have treatment 3 weeks after birth, that won't be enough time. She didn't seem very sympathetic. I feel like a sheet in the wind somedays. just blown back and forth.
I am now reading medical journals, publications and textbooks so I better understand all about thyroid cancer and treatments. I figure if I don't educate myself on this, how will I know if my doctors are doing what is best for me? I find it hard to just "trust" all of them now... knowing that this cancer has grown in me for years undiagnosed by several doctors who told me, "go home, you are fine". hahahaha. the path report post surgery also diagnosed me with chronic thyroiditis, Hashimoto's. How about that? none of those doctors noticed that either!
Wednesday, April 28, 2004
Surgical Pathology Report
I saw the surgeon for follow-up the other day. Prior to my visit I had received, per my request to the hospital, my entire surgical record and all lab reports from the surgery weekend. Among that was the pathology report from the tissue they removed from my neck. I had papillary thyroid cancer tumors on both sides of the thyroid, not just the right where the large nodule was. In addition, the doctor sampled (removed) six enlarged lymph nodes which looked suspicious. The discouraging thing to read was that all six of the six nodes had metastasized cancer in them! What does this mean? Realistically it means the chance of the cancer coming back is higher than if it had been localized just to the thyroid gland. It also means there may be more of the cancer cells in my body. I knew this might be a possibility going into the whole deal, based on the size of the palpable tumor and the length of time it took to grow.
An interesting note was that the path report states I had "Patchy Mild Chronic Thyroiditis". My doc says this is also known as "Hashimoto's Thyroiditis" which is caused by a reaction of the immune system against the thyroid gland & may rarely be associated with other endocrine disorders caused by the immune system. It's likely I had this for many years, undiagnosed, and ultimately I ended up with cancer.Doctor says we are on the same plan so far: wait until the baby is born and then I will have the iodine uptake test to find if there are "markers" elsewhere in my remaining lymph nodes or body. They usually do a whole body scan. I will definitely need to have the I-131 radioactive iodine treatment to kill any cancerous cells that might be in my body. I will continue to take the Synthroid thyroid meds as suppression therapy for the rest of my life. Regular screening and blood tests will also be in my future forever!
NO MATTER WHAT ANYONE SAYS, I CONSIDER MYSELF A CANCER SURVIVOR!
An interesting note was that the path report states I had "Patchy Mild Chronic Thyroiditis". My doc says this is also known as "Hashimoto's Thyroiditis" which is caused by a reaction of the immune system against the thyroid gland & may rarely be associated with other endocrine disorders caused by the immune system. It's likely I had this for many years, undiagnosed, and ultimately I ended up with cancer.Doctor says we are on the same plan so far: wait until the baby is born and then I will have the iodine uptake test to find if there are "markers" elsewhere in my remaining lymph nodes or body. They usually do a whole body scan. I will definitely need to have the I-131 radioactive iodine treatment to kill any cancerous cells that might be in my body. I will continue to take the Synthroid thyroid meds as suppression therapy for the rest of my life. Regular screening and blood tests will also be in my future forever!
NO MATTER WHAT ANYONE SAYS, I CONSIDER MYSELF A CANCER SURVIVOR!
Tuesday, April 27, 2004
Recovering from Thyroidectomy
Well - you can see the photo as evidence of the surgery (click on the title of this post). It is healing quite well and only hurts a little now. The worst part is the congestion and cough I am still fighting after 12 days! I get tired easily, my heart races sometimes and that's about the worst of it. When I go out places the first thing people notice is my prego-belly and the next thing they do is look up to see the neck incision, it's funny to watch the looks on their faces as they try to figure out what happened to me?
Monday, April 19, 2004
Home from the Hospital
I AM BACK HOME NOW!! Thanks to all of you for your prayers and thoughts, they really work. I (we) went through surgery fine on Friday, took about 2 hours and they monitored me afterward in labor & delivery for an hour or so to make sure baby is ok. She has continued to have a strong heartbeat through the whole ordeal. They let me stay for observation until Sunday, I came home Sunday afternoon - relieved to rest in my own bed and to finally have a nice warm bath. I have about a 3" incision at the base of my neck w/stitches & covered in tape. Now we wait for pathology reports to determine follow-up treatments. I have to keep this short for now, tired....
Monday, April 05, 2004
Surgery on April 16th
My surgery is scheduled for FRIDAY APRIL 16th at 11:15AM (I will be 22 weeks pregnant). Thank you so much for the prayers and words of wisdom! I was feeling down, with my chin in the dirt there, for the first few days and I quickly snapped out of it. I had to say to myself - "ok girl, it's time to take charge and change what you can about this situation" (the way that I deal with it). So I did and it has made a world of difference. That and my faith in God, I am in good hands and whatever will be is what is intended for my life. I am ok with that. I feel very confident about this being the best decision for me and the baby. This way I can recover from surgery, get on thyroid meds, have the baby in a few months, recover from c-section and then have the RAI treatment.... one thing at a time. It is such a joy to be pregnant and carrying this baby, I totally love it. It is one thing I can focus on in even my worst moments and feel an abundance of love and joy. I am blessed!I will probably be in there for at least two days to recover. Since the surgery is on my neck/throat area I will be asked not to talk much (oh-my) & it is possible that I might have temporary paralysis of vocal cords which would certainly eliminate the possibility of talking! Please don't expect to hear from me personally but Rick will do his best to keep everyone updated.
Sunday, April 04, 2004
Pregnancy & Cancer Research... continued
Some have asked me why I am having surgery now. Yes, I could wait. However I have an instinctive feeling that it is best to take care of this right away. Just like I instinctively insisted on the biopsy which gave me the diagnosis, that was another case where I was told I could "wait". Now I am glad that I didn't! I found a helpful webpage called www.pregnantwithcancer.org which has been very helpful to me and comforted me in my decision. They have connected me with a thyroid cancer survivor who was diagnosed during her pregnancy.
Friday, April 02, 2004
Pregnancy & Cancer Research
My research has led me to Dr. Elyce Cardonick of Cooper University Hospital in Camden, NJ. Since 1996 she has been involved in the study & care of pregnant women diagnosed with cancer. I think she will be very helpful to me in understanding what I am going through and what I can expect. I spoke with her and she reassured me that surgery – especially the type I will have which does not involve the abdominal area – is very safe during the second trimester. She has only encountered one other woman pregnant with thyroid cancer in her study, breast cancer by far is the most common diagnosis in her experience.
Tuesday, March 30, 2004
Off to see the Radiation Oncologist
Visited with the Radiation Oncologist who agrees with the last two docs that I can have surgery now (if I choose to) and wait until after baby is born for follow up I-131 treatments (up to 6 months or more & it is as effective as being done right away). The surgeon will remove the entire thyroid and any other potential cancerous area and then a month or so after delivery I will receive "RAI" Radioactive Iodine (I-131), single dose, which ablates or destroys any remaining thyroid tissue in my body. I will have to take thyroid meds for the rest of my life and be checked regularly. The prognosis is very good. Although thyroid cancer is very rare, the type that I have is considered highly "curable" or treatable. I am 20 weeks pregnant.
Wednesday, March 24, 2004
Meeting with the Surgeon re: Total Thyroidectomy
Met with the surgeon, Dr. Schneider, to find out what to do now. He says surgery can either be done now or wait depending on what the oncologist says regarding treatments after surgery. Very impressed with this doctor - he confidently and carefully answered three pages of questions I brought into the appointment! The procedure is called a Total Thyroidectomy. He has perfomed many of these and tells me the decision is mine to make (whether to have surgery now, while pregnant or to wait). It’s a horrifying position to be put in to have to make a decision when you are already in a state of shock at the turn of events. I asked him to schedule it since he has a full schedule and I have about a two week window at this point during which it is technically “safe” to have surgery while bring pregnant. I am going home to do some serious research into surgery during pregnancy and see what comes of that. I can always cancel or reschedule the surgery.
Monday, March 22, 2004
That scary phone call I wasn't expecting...
My OB/Gyn called me at home this morning and asked that I would in to see him today. They found abnormal cells in my thyroid.
I have papillary carcinoma. Thyroid cancer.
okay, yeah... this is scary now. He says the 2nd trimester is the safest time during pregnancy for surgery & refers me to a surgeon.
I am 19 weeks pregnant.
I have papillary carcinoma. Thyroid cancer.
okay, yeah... this is scary now. He says the 2nd trimester is the safest time during pregnancy for surgery & refers me to a surgeon.
I am 19 weeks pregnant.
Wednesday, March 17, 2004
Biopsy of the Thyroid
Went to the Enloe hospital radiology department for a biopsy of the nodule on my thyroid to see what the heck is in there? (the term biopsy means to obtain a sample of the tissue and examine it under the microscope to see if the cells have taken on the characteristics of cancer cells). Thyroid cancer is no different in this situation from all other tissues of the body...the only way to see if something is cancerous is to biopsy it. However, thyroid tissues are easily accessible to needles, so rather than operating to remove a chunk of tissue with a knife, we can stick a very small needle into it and remove cells for microscopic examination. This method of biopsy is called a fine needle aspiration biopsy, or "FNA". I’ll Have to wait a few days for the lab report.
Monday, March 08, 2004
Getting the Second Opinion
Went to the second opinion appointment. This doctor was so young looking, right out of med school, if I had to guess. An Internal Medicine Specialist, she was very thorough and attentive to my various questions. She basically indicated that this nodule might be “nothing to worry over” and suggested that I wait until after my baby is born to follow up with a biopsy. I explained to her that it was hard enough being pregnant and feeling neurotic all the time, and that it has been years of having this large thyroid that made me want to know NOW what is going on in there! So she agreed to refer me for the biopsy because I was insistent about it.
Saturday, February 21, 2004
Follow up visit & Ultrasound result - 14 weeks pregnant
I went for my second OB appt on Weds and the doc was very happy since I have had my "first" weight gain during the pregnancy = 5lbs. wooohooo! FINALLY, a man who is happy when women gain weight. hahaha. I was able to hear the baby's heartbeat again and it's very strong and fast... so far, so good.
So during this appt, he reviewed the radiologist's report regarding my thyroid ultrasound. Apparently I have a 2.8cm x 1.2 cm nodule on the right side. Normally they would consider it a no big deal - "ignore it" kind of thing - but the ultrasound showed is increased vascularity to the region and the radiologist recommended it be checked further. Of course my doc delivers babies, he doesn't know much about thyroid (admittedly) so I have been referred to ANOTHER doctor!
This doc is supposed to provide a "second opinion" as to whether or not to request a biopsy. I am going to assert myself in this appointment and press the issue.
So during this appt, he reviewed the radiologist's report regarding my thyroid ultrasound. Apparently I have a 2.8cm x 1.2 cm nodule on the right side. Normally they would consider it a no big deal - "ignore it" kind of thing - but the ultrasound showed is increased vascularity to the region and the radiologist recommended it be checked further. Of course my doc delivers babies, he doesn't know much about thyroid (admittedly) so I have been referred to ANOTHER doctor!
This doc is supposed to provide a "second opinion" as to whether or not to request a biopsy. I am going to assert myself in this appointment and press the issue.
First of all, every doctor I have seen for at least the last 10 years has noticed my enlarged thyroid and proceeded to run the necessary blood tests, which all came out in the normal numbers. However, none of them have mentioned a nodule before... so either it was not palpable or they didn't feel it was worth mentioning. I was an HMO victim once before, so I sure wouldn't put it past them to ignore it as a way to save money. That sounds so terrible... but... in light of my past experiences I can't help but feel that way at times!
Anyhow I am going to see if I can convince to go ahead and do a biopsy. It would give me tremendous peace of mind to know what it really is or isn't. This appointment isn't until March 8th which is 4 days after I have amniocentisis to check out the baby. anticipation....
I am feeling more pregnant everyday. I think this baby grew twice it's size in one week! All of a sudden pants don't fit and sheesh, nothing looks good on me anymore. Who knew that one day I would be admitting that maternity pants are SO COOL!! heheheh. I gave in and put on a pair, and oh what a relief to not have to unbutton anymore.
Okay I am going to wrap this letter up - I need to be horizontal for awhile. Time to go to bed.
Anyhow I am going to see if I can convince to go ahead and do a biopsy. It would give me tremendous peace of mind to know what it really is or isn't. This appointment isn't until March 8th which is 4 days after I have amniocentisis to check out the baby. anticipation....
I am feeling more pregnant everyday. I think this baby grew twice it's size in one week! All of a sudden pants don't fit and sheesh, nothing looks good on me anymore. Who knew that one day I would be admitting that maternity pants are SO COOL!! heheheh. I gave in and put on a pair, and oh what a relief to not have to unbutton anymore.
Okay I am going to wrap this letter up - I need to be horizontal for awhile. Time to go to bed.
Thursday, February 12, 2004
Thyroid Ultrasound
Went to North State Imaging at 10 this morning for ultrasound of my neck. They only did the one side where my "nodule" is ... what if there is something smaller on the other side that can't be seen? ughhhhh the things that go through your mind. The tech wouldn't tell me anything, of course (other than there IS a nodule, duh) and defers to the radiologist that will read the report and send it to my doctor. Go home, wait.
Monday, February 02, 2004
Preface
I likely had a thyroid disorder for at least 7-10 years prior to my diagnosis. I was always aware of an enlarged thyroid or "goiter" in my neck and it was clearly visible to anyone. Every doctor I saw in this period of time - generally once a year for my annual OB/Gyn appt - was asked (by me) to please look at this area and I also requested the appropriate blood testing. To the doctor, this meant testing my TSH, T4 and T3 which always came out within the normal ranges.
Since these levels came out "normal" and I was not symptomatic of Hyperthyroid or Hypothyroid disorders, none of my doctors pursued any further testing nor did they refer me to an endocrinologist for further examination. In retrospect, I wish I had known to ask for a referral a specialist, because I had a sleeping dragon in my body, so to speak! But they told me I was "ok", to go home and not worry, so I did that.
Prior to moving to Chico my last regular annual exam was in July 2003. I asked the doc to check my thyroid, he noticed the goiter, ran the same tests and everything again was normal. End of story.
After finding out that I was pregnant in December 2003, my first OB appt was in January 2004, this was a new doctor for me - I asked him to check my thyroid. Upon palpation he noticed a nodule on the right hand side (in addition to the obvious goiter) and asked me if my last doctor had mentioned it to me? Uhhhh…no…..and what is a nodule? Doc referred me to the radiologist to have an ultrasound of the area on my neck where he felt the nodule. It took several weeks to get into the place and have this done.
Since these levels came out "normal" and I was not symptomatic of Hyperthyroid or Hypothyroid disorders, none of my doctors pursued any further testing nor did they refer me to an endocrinologist for further examination. In retrospect, I wish I had known to ask for a referral a specialist, because I had a sleeping dragon in my body, so to speak! But they told me I was "ok", to go home and not worry, so I did that.
Prior to moving to Chico my last regular annual exam was in July 2003. I asked the doc to check my thyroid, he noticed the goiter, ran the same tests and everything again was normal. End of story.
After finding out that I was pregnant in December 2003, my first OB appt was in January 2004, this was a new doctor for me - I asked him to check my thyroid. Upon palpation he noticed a nodule on the right hand side (in addition to the obvious goiter) and asked me if my last doctor had mentioned it to me? Uhhhh…no…..and what is a nodule? Doc referred me to the radiologist to have an ultrasound of the area on my neck where he felt the nodule. It took several weeks to get into the place and have this done.
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