in fact, i feel like a mouse who has just had her nest turned up by a plow. despite our best efforts in planning, life seems to get in our way and turn up our little, comfortable nests. my ancestors were scottish, so a poem by robert burns seems appropriate- not just for the sentiment.
my" best laid plans" were to have my usual 6 months thyroid cancer check up starting with blood work next week. then the week following that, i would be discussing the results with my endocrinologist. i also have a bone density test and an ultrasound of my neck( to make sure there are no beasties there) scheduled on the day of my office visit. of course, now ,i have to cancel all of this. i am not sure when/ how i will reschedule all of these tests.
i am not having any problems with my neck area , that i am aware of, and of course my breast cancer issues have trumped my thyroid cancer. still, i am a little nervous missing the six month check up. my endocrinologist keeps me on a six month schedule because i not only had thyroid papillary cancer, but a small section of follicular variant- which is a more aggressive type of cancer. leave it to me to be a little different.
i am going to call on monday and cancel my appointments with the endocrinologist. i called yesterday, but the office was closed. i had hoped to make at least the office visit,tests,etc, and thought that i could if i had to have just the lumpectomy. but i am sure that i will not feel like riding for 8 hours in the car to see my endocrinologist after my mastectomy(s).
yes, i am now considering asking about a double mastectomy. i have just heard the news about the actress, Rita Wilson, and her decision to have a double mastectomy. i am not sure about the details of her cancer versus mine, but she did have the same cancer as i do- which is called invasive lobular. anyone who has met me for a few minutes probably knows that i am a " worrier" kind of person. i have dense tissue and calcifications in both breasts. i would very much like to not have to worry about the other side, or worse yet, have to go through this process twice.
if you have read my breast cancer blog, you know ,that by the grace of God, i got another radiologist who saw what the other radiologist had missed. the second radiologist did another biopsy called a sterotactic biopsy, and found that some of the calcifications were indeed cancerous. so this wonderful woman( she is my hero now) saved me from having two surgeries. i would have had a lumpectomy for the tumor mass, and then would have to have had a mastectomy to get the dastardly cancer cells. ( if you look up the word dastardly, here is the meaning: wicked, evil, heinous, villainous, diabolical, despicable, sordid, etc, ,, such a perfect word in this situation).
i suppose that i am going to have to wait and see if any "sarah palin", aka, rogue, thyroid cancer cells are causing any mayhem elsewhere in my body. when thyroid cancer cells travel, they take up residence in the lungs and bones. i know for a fact, i had to have a chest x-ray before surgery, that my lungs are fine. beautiful, actually, since i am a non-smoker.( my doctor showed me the x-ray). as for my bones, i will just have to hope that they are "rogue" free, as well. there could be some beasties in my neck or lymph nodes, but hopefully not.
i have lots of important decisions to make in the next few days. i will research everything that i can, but basically i think that i will go on my "gut" feelings, as i have so far. that and my faith, family, and friends have been getting me through what is the most difficult time in my life. and of course, i will be starting on a new nest...
Saturday, April 18, 2015
Wednesday, April 8, 2015
an unexpected journey........................" no, i do not want any adventure, not today!" quote from the hobbit by JRR Tolkien
some of the symptoms that i had when i was first diagnosed with thyroid cancer were extreme tiredness( and i am not talking about the " usual" tiredness, but one that is so pronounced that at times i was not sure that i had the energy to drive home from work) and my severe(anaphylatic) reaction to sulfite preservatives in food. after my surgery and treatment for thyroid cancer, and with the help of my allergist, these two symptoms improved. i was not as tired, and while my allergy to sulfites did not go away, it was much improved. i was actually able to eat SOME foods that had once made me sick.
you can imagine my concern when these two symptoms came back! so, i called my endocrinologist about three months ago, and since my t-3 was a point down from my usual reading, we reasoned that it was my lower t3. she prescribed a 5mcg dose of cytomel to add to my levoxyl dose. i decided to take the cytomel in the afternoon - when i began to crash. as for the worsening of my sulfite allergies- well, i did not know what to think. i saw my allergist about two months before i saw my endocrinologist and began my " thyroid cancer journey" and at that time my allergist said that she thought that i may have a malignancy somewhere in my body. but where?
my big thyroid cancer check up is at the end of this month. honestly, i thought that my thyroid cancer must have returned. the two places that thyroid cancer typically migrates to is the lungs and/or bones. i had just had a chest x-ray last month . ( i was planning on getting a knee replacement in may and had to have a pre-surgery physical. ) my chest x-ray was perfect- no lung problems. my bones were fine, as far as my doctors and i know, so no problems there.
a couple of weeks ago, i had my yearly mammogram and pap test. i got a call from my gynecologist's office that i needed more studies on my left breast. this has happened before- in fact three times. i have dense breasts with calcifications. i was not worried. i went to a diagnostic center for a 3-D mammogram and ultrasound. the radiologist showed me the films and said that i have a mass in my left breast. he said that it was very suspicious. ok, now i am worried. from there , i went to see a surgeon who is experienced in breast surgery. he told me that he usually does not tell patients this before the biopsy results come in, but he was pretty sure that i have breast cancer.
i can not even begin to tell you what a shock that was! i do not have any risk factors, there is no breast cancer in my family at all, and i breast fed my children. the only "culprit" may have been the estrogen and progesterone tablets that i have taken for a few years. so, the next step was to have a breast biopsy. i had that on monday at 10am. the biopsy was done by a radiologist who specializes in breast biopsies. he and his staff were wonderful to me. kind, professional, and they tried to make things as comfortable for me as possible.
today i received the official results: yes, i have breast cancer. my surgeon told me that i have a cancer that is called " invasive lobular". it is a rare form ( figures) which only comprises about 10% of all breast cancers. the mass is small, he did not give me exact measurements, and he thinks that a partial mastectomy ( lumpectomy) along with six weeks ( 5 days per week) of radiation therapy will be all that i need. he is going to biopsy two lymph nodes under my left arm. if they are positive, then i will probably have to have more surgery and possibly, chemotherapy,too. also, if he does not get clear edges, and he will not know this until after my surgery, i will have to have basically, a full mastectomy.
when i was diagnosed with thyroid cancer, i felt so alone. no one knows very much about thyroid cancer. some people do not even know where your thyroid gland is located! if it were not for my blog, and all of the kind people who reached out to me through it, i am not sure how well i would have managed. breast cancer seems different. although thyroid cancer is the fastest growing cancer, more women( here i mean greater numbers ) have breast cancer and there are more support groups and resources available. that does not mean that i feel any less worried or scared. i wish, though, that thyroid cancer would get the attention it deserves.
so i decided to start a new blog. no, i am not abandoning this blog, but i will have another blog about my experiences with breast cancer. it will be called: an unexpected journey.... my journey with breast cancer. i decided on the name of the blog in the same manner that i usually get the titles for my blog entries. i woke up with the song from the hobbit movie on my mind. it is that sweet little melody that is played whenever the hobbit gets near home. oddly enough, the same day i was in a book store and saw a journal, which i purchased, that had " the hobbit, an unexpected journey" on the cover. i said enough already, i get the message, and so that is how i came up with the title. hopefully, the hobbit people will not mind me borrowing a bit of this for my blog title.
i hope to be brave, funny, and be able to provide information to other women who may be taking this journey,too. for every new journey there is a beginning. mine begins today.........
you can imagine my concern when these two symptoms came back! so, i called my endocrinologist about three months ago, and since my t-3 was a point down from my usual reading, we reasoned that it was my lower t3. she prescribed a 5mcg dose of cytomel to add to my levoxyl dose. i decided to take the cytomel in the afternoon - when i began to crash. as for the worsening of my sulfite allergies- well, i did not know what to think. i saw my allergist about two months before i saw my endocrinologist and began my " thyroid cancer journey" and at that time my allergist said that she thought that i may have a malignancy somewhere in my body. but where?
my big thyroid cancer check up is at the end of this month. honestly, i thought that my thyroid cancer must have returned. the two places that thyroid cancer typically migrates to is the lungs and/or bones. i had just had a chest x-ray last month . ( i was planning on getting a knee replacement in may and had to have a pre-surgery physical. ) my chest x-ray was perfect- no lung problems. my bones were fine, as far as my doctors and i know, so no problems there.
a couple of weeks ago, i had my yearly mammogram and pap test. i got a call from my gynecologist's office that i needed more studies on my left breast. this has happened before- in fact three times. i have dense breasts with calcifications. i was not worried. i went to a diagnostic center for a 3-D mammogram and ultrasound. the radiologist showed me the films and said that i have a mass in my left breast. he said that it was very suspicious. ok, now i am worried. from there , i went to see a surgeon who is experienced in breast surgery. he told me that he usually does not tell patients this before the biopsy results come in, but he was pretty sure that i have breast cancer.
i can not even begin to tell you what a shock that was! i do not have any risk factors, there is no breast cancer in my family at all, and i breast fed my children. the only "culprit" may have been the estrogen and progesterone tablets that i have taken for a few years. so, the next step was to have a breast biopsy. i had that on monday at 10am. the biopsy was done by a radiologist who specializes in breast biopsies. he and his staff were wonderful to me. kind, professional, and they tried to make things as comfortable for me as possible.
today i received the official results: yes, i have breast cancer. my surgeon told me that i have a cancer that is called " invasive lobular". it is a rare form ( figures) which only comprises about 10% of all breast cancers. the mass is small, he did not give me exact measurements, and he thinks that a partial mastectomy ( lumpectomy) along with six weeks ( 5 days per week) of radiation therapy will be all that i need. he is going to biopsy two lymph nodes under my left arm. if they are positive, then i will probably have to have more surgery and possibly, chemotherapy,too. also, if he does not get clear edges, and he will not know this until after my surgery, i will have to have basically, a full mastectomy.
when i was diagnosed with thyroid cancer, i felt so alone. no one knows very much about thyroid cancer. some people do not even know where your thyroid gland is located! if it were not for my blog, and all of the kind people who reached out to me through it, i am not sure how well i would have managed. breast cancer seems different. although thyroid cancer is the fastest growing cancer, more women( here i mean greater numbers ) have breast cancer and there are more support groups and resources available. that does not mean that i feel any less worried or scared. i wish, though, that thyroid cancer would get the attention it deserves.
so i decided to start a new blog. no, i am not abandoning this blog, but i will have another blog about my experiences with breast cancer. it will be called: an unexpected journey.... my journey with breast cancer. i decided on the name of the blog in the same manner that i usually get the titles for my blog entries. i woke up with the song from the hobbit movie on my mind. it is that sweet little melody that is played whenever the hobbit gets near home. oddly enough, the same day i was in a book store and saw a journal, which i purchased, that had " the hobbit, an unexpected journey" on the cover. i said enough already, i get the message, and so that is how i came up with the title. hopefully, the hobbit people will not mind me borrowing a bit of this for my blog title.
i hope to be brave, funny, and be able to provide information to other women who may be taking this journey,too. for every new journey there is a beginning. mine begins today.........
Sunday, March 1, 2015
thyroid cancer has lots of baggage, i think. for me it was skin cancer, and sulfite allergy.......
in my blog i have mentioned my bout with squamous cell cancer on my leg. it was about a year after my thyroid cancer. and while i do not think that my thyroid cancer "caused" this cancer, having thyroid cancer for so long before i was diagnosed certainly weakened my immune system. that is just my theory for having skin cancer so close to my thyroid cancer.
one subject that i have never, ever mentioned in my blog,though, is my sulfite allergy. you could say that it is what got me on the track to discovering my thyroid cancer. for years, i had been sulfite sensitive, and then all of a sudden it became a severe sulfite allergy- involving anaphylaxis. at my wits end, which was not too far of a trip at this point, i consulted an allergist. well, let me back up, i actually had to go to FOUR different allergists before i found one who A) believed me and B) wanted to help me. the allergist i finally found was wonderful to me. the fact that someone finally believed me was such a relief! the only problem, was that while she prescribed some allergy medication for me, she said the only "treatment" is avoidance of foods/drugs/cleaning products,etc, that contain sulfites. before i go on to list some sulfite names, products,etc, i would like to explain how this allergist got me on the road to my thyroid cancer discovery. she told me that my immune system was severely compromised- that was why i was having anaphylactic reactions ( sometimes as often as 3 or 4 times a week) to sulfites. she told me frankly that she thought that i had cancer somewhere in my body! i had had all of my routine tests for cancer- mammogram, pap test, colonoscopy, so i racked my brain as to where it could be. the only area that i was having trouble was my thyroid----- BINGO! i found an excellent( i have to call her excellent, because she saved my life) endocrinologist who started with a very thorough biopsy, and well the rest is thyroid cancer history, you might say.
now, back to sulfites. what in the world are they? well, they are additives that are used to make food last longer and look better.( they keep food/medication from turning dark ) . in other words, they stabilize drugs and other chemical solutions. they do not have to be listed on any product unless they contain more than 10 parts per million. some products, though, contain several hundred parts per million. and some fruit and vegetable products can approach 1,000 parts per million.
some common names for sulfite preservaties, when listed, are:
sulfur dioxide, potassium bisulfite, potassium metabisulfite, sodium bisulfite, sodium metabisulfite, and sodium sulfite. you could correctly say that the "sulfite" part in the name gives it away.
back when i was just sulfite sensitive, i had intestinal troubles- i will not list them, as you can probably assume what they were. when i progressed to an allergy, i developed a rash, tingling red skin, headache, trouble breathing, chest pain, in other words, anaphyaxis. ironically, one of the drugs to treat anaphylaxis, an epi-pen, contains sulfite preservaties to keep it from turning brown! in the past, i was able to obtain one brand of epinephrine( what epi-pen contains) which was sulfite free. that company is no longer in business, unfortunately.
people who have sulfite allergy or sensitivity are pretty much in the minority. ( sort of like the 5-10% chance of having thyroid cancer when you have thyroid nodules). i have had to research this for myself. my allergist has offered moral support, but i am the only one who can do anything to help myself. i have to avoid foods which i think contain sulfites. there is a large list- i do not have the space to list everything here, but i will give you the short list. some fresh fruits and vegetables( to prevent browning), shrimp and lobster( same browning issue), condiments and relishes, white sugar, jams and jellies, grain products and pastas, snack food, processed foods, instant teas, the list goes on. for anyone really needing a complete list, i can recommend going online and searching sulfite allergy. i continue to learn about this, and it has been a major " game changer" in my life. i have not eaten out in a restaurant in over ten years. i buy only organic food, though some foods naturally contain sulfites that i have to avoid, even organic. these are onions and garlic and grapes. i did not know how hard it was to cook without onions and garlic until this happened!
i asked my allergist when i saw her the year after her prediction, and told her about my thyroid cancer, surgery,etc. if this sulfite anaphylaxis would now go away. she said probably not- once the allergy pathways have been established( her words) they do not usually go away. i have read also, that sulfite allergy is more common in people who have asthma. i have mild asthma, by the way.
this is not a "whiner blog "today. i would just like to let people know about sulfite allergy and be educated. if i had only known about my sulfite problem and not kept eating the foods that were making me sicker and sicker, perhaps i would not have progressed to full blown anaphylaxis ? if my immune system had not gotten so compromised from fighting off the thyroid cancer for so long before i got treatment, perhaps this sulfite allergy would not have progressed ? who knows for sure, of course. i have adjusted to my dietary restrictions, most of the time. occasionally, i will eat something that i think is o.k. but makes me sick. i can usually figure out what it was that made me sick, and i do not repeat my mistake. i love to cook, so this is not as hard for me as it would be for someone who hates to cook. my family has been very, very supportive in this. for that i am extremely grateful. i keep epinephrine and hydroxyzine( an allergy medication) on hand for when i have anaphylaxis.
thyroid cancer has lots of baggage. it is not a quick fix, or a one pill solves all sort of cancer. it is not the good cancer.
one subject that i have never, ever mentioned in my blog,though, is my sulfite allergy. you could say that it is what got me on the track to discovering my thyroid cancer. for years, i had been sulfite sensitive, and then all of a sudden it became a severe sulfite allergy- involving anaphylaxis. at my wits end, which was not too far of a trip at this point, i consulted an allergist. well, let me back up, i actually had to go to FOUR different allergists before i found one who A) believed me and B) wanted to help me. the allergist i finally found was wonderful to me. the fact that someone finally believed me was such a relief! the only problem, was that while she prescribed some allergy medication for me, she said the only "treatment" is avoidance of foods/drugs/cleaning products,etc, that contain sulfites. before i go on to list some sulfite names, products,etc, i would like to explain how this allergist got me on the road to my thyroid cancer discovery. she told me that my immune system was severely compromised- that was why i was having anaphylactic reactions ( sometimes as often as 3 or 4 times a week) to sulfites. she told me frankly that she thought that i had cancer somewhere in my body! i had had all of my routine tests for cancer- mammogram, pap test, colonoscopy, so i racked my brain as to where it could be. the only area that i was having trouble was my thyroid----- BINGO! i found an excellent( i have to call her excellent, because she saved my life) endocrinologist who started with a very thorough biopsy, and well the rest is thyroid cancer history, you might say.
now, back to sulfites. what in the world are they? well, they are additives that are used to make food last longer and look better.( they keep food/medication from turning dark ) . in other words, they stabilize drugs and other chemical solutions. they do not have to be listed on any product unless they contain more than 10 parts per million. some products, though, contain several hundred parts per million. and some fruit and vegetable products can approach 1,000 parts per million.
some common names for sulfite preservaties, when listed, are:
sulfur dioxide, potassium bisulfite, potassium metabisulfite, sodium bisulfite, sodium metabisulfite, and sodium sulfite. you could correctly say that the "sulfite" part in the name gives it away.
back when i was just sulfite sensitive, i had intestinal troubles- i will not list them, as you can probably assume what they were. when i progressed to an allergy, i developed a rash, tingling red skin, headache, trouble breathing, chest pain, in other words, anaphyaxis. ironically, one of the drugs to treat anaphylaxis, an epi-pen, contains sulfite preservaties to keep it from turning brown! in the past, i was able to obtain one brand of epinephrine( what epi-pen contains) which was sulfite free. that company is no longer in business, unfortunately.
people who have sulfite allergy or sensitivity are pretty much in the minority. ( sort of like the 5-10% chance of having thyroid cancer when you have thyroid nodules). i have had to research this for myself. my allergist has offered moral support, but i am the only one who can do anything to help myself. i have to avoid foods which i think contain sulfites. there is a large list- i do not have the space to list everything here, but i will give you the short list. some fresh fruits and vegetables( to prevent browning), shrimp and lobster( same browning issue), condiments and relishes, white sugar, jams and jellies, grain products and pastas, snack food, processed foods, instant teas, the list goes on. for anyone really needing a complete list, i can recommend going online and searching sulfite allergy. i continue to learn about this, and it has been a major " game changer" in my life. i have not eaten out in a restaurant in over ten years. i buy only organic food, though some foods naturally contain sulfites that i have to avoid, even organic. these are onions and garlic and grapes. i did not know how hard it was to cook without onions and garlic until this happened!
i asked my allergist when i saw her the year after her prediction, and told her about my thyroid cancer, surgery,etc. if this sulfite anaphylaxis would now go away. she said probably not- once the allergy pathways have been established( her words) they do not usually go away. i have read also, that sulfite allergy is more common in people who have asthma. i have mild asthma, by the way.
this is not a "whiner blog "today. i would just like to let people know about sulfite allergy and be educated. if i had only known about my sulfite problem and not kept eating the foods that were making me sicker and sicker, perhaps i would not have progressed to full blown anaphylaxis ? if my immune system had not gotten so compromised from fighting off the thyroid cancer for so long before i got treatment, perhaps this sulfite allergy would not have progressed ? who knows for sure, of course. i have adjusted to my dietary restrictions, most of the time. occasionally, i will eat something that i think is o.k. but makes me sick. i can usually figure out what it was that made me sick, and i do not repeat my mistake. i love to cook, so this is not as hard for me as it would be for someone who hates to cook. my family has been very, very supportive in this. for that i am extremely grateful. i keep epinephrine and hydroxyzine( an allergy medication) on hand for when i have anaphylaxis.
thyroid cancer has lots of baggage. it is not a quick fix, or a one pill solves all sort of cancer. it is not the good cancer.
Wednesday, February 18, 2015
"Thyroid cancer is NOT the good cancer!" i am so glad that this topic is being discussed, and that more people are beginning to realize that thyroid cancer is not something to be dismissed, or made light of. the following is a discussion ( perhaps) between barbie ( fashion icon) and midge( her best friend )
the conversation between barbie and her best friend midge went something like this:
barbie: " hi midge! i have not seen you in a while. like, where have you been?"
midge: " well, i have had cancer, barbie and have been recuperating for a while."
barbie: " oh, no! what kind of cancer did you have?"
midge: " papillary thyroid cancer with follicular variant, stage 3. my surgeon had to remove all of my
thyroid, plus two of my parathyroids, which were also cancerous, plus eleven lymph nodes."
barbie: " thank goodness you had the GOOD cancer, midge! you had me worried there for a while!"
midge: " well, it is not the good cancer, barbie! i had to take a sort of "chemo", called radioactive iodine( RAI 131). it was a rather large dose, 155 milicuries, and i have had a few problems with my salivary glands from the RAI. i will also have to be monitored with blood tests and scans for the rest of my life. the recurrence rate for my cancer is about 30% and can reoccur in 5, 10 or even 20 years from now. i also will have to take a thyroid replacement hormone for the rest of my life. my dosage will change often, and i will have to have regular blood tests to make sure my dosage is in range to keep me feeling well, while suppressing any thyroid cancer cells that may be circulating throughout my body."
barbie: " really, midge? i thought that you guys with thyroid issues just took a magic pill and everything was great!"
midge: " seriously, barbie? do you really think that a supplement hormone, synthetic or naturally derived, can take the place of the natural hormone that a healthy thyroid makes? the thyroid gland is called the master gland of the body. it controls everything in your body- every cell and every tissue. basically, barbie, from your perfectly dyed blond hair to your perfectly painted red toe nails."
barbie:" gosh, midge, when you put it like that, it is starting to make sense! why on earth would people call this the good cancer?"
midge: : " i have no idea, barbie, but maybe now at least you, ken and skipper will understand the truth behind the " good cancer " myth."
when i was first diagnosed with thyroid cancer, i was understandably scared. when someone told me that i had the good cancer, it was a relief of sorts. then i did lots of reading, and of course, experienced things first hand. at first, when well meaning people would tell me that i had the good cancer, i would let it go. NOT ANY MORE. i inform them, politely of course- they are not mean, just not well informed, that there is no good cancer. a year after my thyroid cancer was diagnosed, i had skin cancer. it was a fairly large squamous cell on my leg. i did not require any further treatment, other than in-office surgery to remove it. i honestly was not too worried about this, even though about 4,000 to 5,000 people die from this kind of skin cancer every year. i would never trivialize this, however. i repeat, there is NO GOOD CANCER.
a side note. i asked my doctor to prescribe cytomel for me. i am taking a small dose, 5mcg, and while i am now on one tablet daily, my endocrinologist has prescribed it for two a day, which i will probably work up to. adding cytomel has made me feel better- i have more energy in the late afternoon, and oddly enough, my vision has improved( i was having some blurry vision in the late afternoon). my doctor and i talked about perhaps adding cytomel at my last visit. my t3 had gone down almost a point, and while it was still in the normal range, it was low normal. when i started having symptoms, i contacted her and she prescribed it for me, my next round of tests is in april. i guess that i will be able to see how my t3 is at that time.
i hope you enjoyed this silly blog! and yes, i had barbie dolls when i was little. midge was my favorite however( she had red hair and freckles like me). if we can get barbie to understand that thyroid cancer is not the good cancer, maybe the rest of the world will follow.
barbie: " hi midge! i have not seen you in a while. like, where have you been?"
midge: " well, i have had cancer, barbie and have been recuperating for a while."
barbie: " oh, no! what kind of cancer did you have?"
midge: " papillary thyroid cancer with follicular variant, stage 3. my surgeon had to remove all of my
thyroid, plus two of my parathyroids, which were also cancerous, plus eleven lymph nodes."
barbie: " thank goodness you had the GOOD cancer, midge! you had me worried there for a while!"
midge: " well, it is not the good cancer, barbie! i had to take a sort of "chemo", called radioactive iodine( RAI 131). it was a rather large dose, 155 milicuries, and i have had a few problems with my salivary glands from the RAI. i will also have to be monitored with blood tests and scans for the rest of my life. the recurrence rate for my cancer is about 30% and can reoccur in 5, 10 or even 20 years from now. i also will have to take a thyroid replacement hormone for the rest of my life. my dosage will change often, and i will have to have regular blood tests to make sure my dosage is in range to keep me feeling well, while suppressing any thyroid cancer cells that may be circulating throughout my body."
barbie: " really, midge? i thought that you guys with thyroid issues just took a magic pill and everything was great!"
midge: " seriously, barbie? do you really think that a supplement hormone, synthetic or naturally derived, can take the place of the natural hormone that a healthy thyroid makes? the thyroid gland is called the master gland of the body. it controls everything in your body- every cell and every tissue. basically, barbie, from your perfectly dyed blond hair to your perfectly painted red toe nails."
barbie:" gosh, midge, when you put it like that, it is starting to make sense! why on earth would people call this the good cancer?"
midge: : " i have no idea, barbie, but maybe now at least you, ken and skipper will understand the truth behind the " good cancer " myth."
when i was first diagnosed with thyroid cancer, i was understandably scared. when someone told me that i had the good cancer, it was a relief of sorts. then i did lots of reading, and of course, experienced things first hand. at first, when well meaning people would tell me that i had the good cancer, i would let it go. NOT ANY MORE. i inform them, politely of course- they are not mean, just not well informed, that there is no good cancer. a year after my thyroid cancer was diagnosed, i had skin cancer. it was a fairly large squamous cell on my leg. i did not require any further treatment, other than in-office surgery to remove it. i honestly was not too worried about this, even though about 4,000 to 5,000 people die from this kind of skin cancer every year. i would never trivialize this, however. i repeat, there is NO GOOD CANCER.
a side note. i asked my doctor to prescribe cytomel for me. i am taking a small dose, 5mcg, and while i am now on one tablet daily, my endocrinologist has prescribed it for two a day, which i will probably work up to. adding cytomel has made me feel better- i have more energy in the late afternoon, and oddly enough, my vision has improved( i was having some blurry vision in the late afternoon). my doctor and i talked about perhaps adding cytomel at my last visit. my t3 had gone down almost a point, and while it was still in the normal range, it was low normal. when i started having symptoms, i contacted her and she prescribed it for me, my next round of tests is in april. i guess that i will be able to see how my t3 is at that time.
i hope you enjoyed this silly blog! and yes, i had barbie dolls when i was little. midge was my favorite however( she had red hair and freckles like me). if we can get barbie to understand that thyroid cancer is not the good cancer, maybe the rest of the world will follow.
Saturday, February 7, 2015
" You picked a fine time to leave me, Lucille..." WAIT, THAT IS NOT WHAT I WANTED TO SAY! this is what i want to say: " I'M BAAAAACCCCKKK!!"
during my husband's eight week recovery from his second hip replacement, Christmas at my house 9 days after his surgery, and work, i have come to a startling conclusion: no, i am not the energizer bunny! i have let my blog go, i have not read a book in a while( this almost never happens), i have not been to zumba in a while( this also almost never happens), just to name a few of my favorite things that i have not had the energy or time to do. things are beginning to get back to yet another kind of " new normal", so hopefully i will again be able to do some of the things that i most enjoy .
now, my husband is an excellent patient. i am lucky. he never whines or complains .he has done just what the doctor told him to do- physical therapy, etc, in fact, he has a tendency to do too much. . but the hip surgery this time was a little harder on him. it was his right hip, so he could not drive for a very long time. that meant that i got to do quite a few extra chores. my favorite( can you detect the cynicism here?) was the trip to take our trash off. i thought i could do it, no problem. after all, how hard could it be? i got the recyclables in their correct bins, and then headed to the main trash bin. i heaved the garbage bag over my shoulder and was aiming for the bin. now, i- like most people- know something about gravity. that trash bag did not go forward as planned, but almost landed me on my rear end! i just had to laugh at myself, along with a couple other people who were there. my subsequent trips to take the trash off went a lot better, i am happy to report.
sometimes i forget that i am living with a chronic illness. yes, i take a thyroid supplement each day and people, and that includes me sometimes, think that the "magic pill "is all that i need. i had no choice but to have that darn thyroid and two of my parathyroids removed. i am grateful to be alive. however, this is a game changer, so to speak. i get " power outages" i like to call them, when i do too much at work/home/ or wherever. i simply can not move sometimes when i get home! also, i have been having trouble with my vision- my eyes (TED?) get blurry and that makes reading a book difficult when i get home. i am not complaining, well, maybe a little bit. but my point is that we, as thyroid cancer patients, need to take extra good care of ourselves. i have been adding an extra hour of sleep on to my bedtime, and that has helped some. sometimes, though, and i have heard this from other thyroid patients, the sleep that we get is not " good sleep". oh, to sleep like i did when the kids were little! i was so happy to get to bed, i just passed out. an elephant could have held a zumba class in my bedroom and i would not have woken up.
so, please take care of yourself, be gentle, and be patient. say no to extra stuff that you know will push you over the edge of what you can comfortably do. i am hopefully going to be back on my blog on a regular basis. i have a ton of books in my" to read pile" that i will be starting on. my zumba bag is now at least packed and ready to go. and i have a topic for next time's blog. " thyroid cancer is not the good cancer, and i am not going to take it anymore!!" stay tuned......
now, my husband is an excellent patient. i am lucky. he never whines or complains .he has done just what the doctor told him to do- physical therapy, etc, in fact, he has a tendency to do too much. . but the hip surgery this time was a little harder on him. it was his right hip, so he could not drive for a very long time. that meant that i got to do quite a few extra chores. my favorite( can you detect the cynicism here?) was the trip to take our trash off. i thought i could do it, no problem. after all, how hard could it be? i got the recyclables in their correct bins, and then headed to the main trash bin. i heaved the garbage bag over my shoulder and was aiming for the bin. now, i- like most people- know something about gravity. that trash bag did not go forward as planned, but almost landed me on my rear end! i just had to laugh at myself, along with a couple other people who were there. my subsequent trips to take the trash off went a lot better, i am happy to report.
sometimes i forget that i am living with a chronic illness. yes, i take a thyroid supplement each day and people, and that includes me sometimes, think that the "magic pill "is all that i need. i had no choice but to have that darn thyroid and two of my parathyroids removed. i am grateful to be alive. however, this is a game changer, so to speak. i get " power outages" i like to call them, when i do too much at work/home/ or wherever. i simply can not move sometimes when i get home! also, i have been having trouble with my vision- my eyes (TED?) get blurry and that makes reading a book difficult when i get home. i am not complaining, well, maybe a little bit. but my point is that we, as thyroid cancer patients, need to take extra good care of ourselves. i have been adding an extra hour of sleep on to my bedtime, and that has helped some. sometimes, though, and i have heard this from other thyroid patients, the sleep that we get is not " good sleep". oh, to sleep like i did when the kids were little! i was so happy to get to bed, i just passed out. an elephant could have held a zumba class in my bedroom and i would not have woken up.
so, please take care of yourself, be gentle, and be patient. say no to extra stuff that you know will push you over the edge of what you can comfortably do. i am hopefully going to be back on my blog on a regular basis. i have a ton of books in my" to read pile" that i will be starting on. my zumba bag is now at least packed and ready to go. and i have a topic for next time's blog. " thyroid cancer is not the good cancer, and i am not going to take it anymore!!" stay tuned......
Thursday, November 27, 2014
just a little note of thanksgiving....
gratitude. thankfulness. mindfulness. strength. these are words that were not necessarily in my vocabulary before i had cancer. as the saying goes, " i am not thankful for cancer, but i am thankful for the changes in my life after cancer", to paraphrase. i feel that i have been given a second chance of sorts, and i do not want to waste it. i do my best to appreciate all of the little things, the good things in my life. now, i have to constantly remind myself of this. it is too easy to get caught up in work related drama or other such nonsense, and forget what is really important. i suppose this varies somewhat from person to person, but for me anyway, what matters most is to love and help people. i especially like to encourage people to be their own health advocate.
there was an article on the thyca website recently , and i have also mentioned this before in previous blogs, but everyone must be their own best patient advocate. it is important to be conscious of what is going on in your health care, especially if you have cancer or another chronic health condition . every patient should keep records of tests, doctor visits, etc. and be able to make decisions on the treatment and tests that are best for them. it takes a bit of work, sure, but what better investment can you make than to take an active part in your health care? you may have wonderful doctors, but if you are not aware of what is going on and are not involved in the treatment, then there is a serious piece of the puzzle that is missing.
no one knows better than you on how you are feeling. if something feels wrong, then it probably is. get a second opinion, or third, or heck, even a fourth. ask questions- of everyone. being in health care, i like to answer people's questions about their health care. there are no stupid questions- o.k. maybe i have heard a FEW over the years, but it helps to gather all the information that you can and then make a decision that is right for you.
i am so thankful that i finally got myself together and sought out a doctor who would do the necessary tests and therefore could give me a correct diagnosis and treatment. this is such an important issue for me! my doctor said that i gave her quite the scare- it was a close call. i hope that i can encourage people to stand up for themselves and get the care and treatment that they need.
in his season of thanksgiving, i am thankful for my family and friends. i am grateful for having more time to be with them. i try to express gratitude for all of the good things that come my way. i try to be mindful of what i am doing and how it affects others. and last, but not least, i am appreciative of the strength that i did not know that i had. i have been through quite a lot, but i am tougher than i ever could have imaged- before i got sick. people like to say that cancer does not define them. well, it may not define me, but it might be said that it changed the definition of "me".
happy thanksgiving to all of my family and friends. may this time be one of joy and peace for you and your family.
there was an article on the thyca website recently , and i have also mentioned this before in previous blogs, but everyone must be their own best patient advocate. it is important to be conscious of what is going on in your health care, especially if you have cancer or another chronic health condition . every patient should keep records of tests, doctor visits, etc. and be able to make decisions on the treatment and tests that are best for them. it takes a bit of work, sure, but what better investment can you make than to take an active part in your health care? you may have wonderful doctors, but if you are not aware of what is going on and are not involved in the treatment, then there is a serious piece of the puzzle that is missing.
no one knows better than you on how you are feeling. if something feels wrong, then it probably is. get a second opinion, or third, or heck, even a fourth. ask questions- of everyone. being in health care, i like to answer people's questions about their health care. there are no stupid questions- o.k. maybe i have heard a FEW over the years, but it helps to gather all the information that you can and then make a decision that is right for you.
i am so thankful that i finally got myself together and sought out a doctor who would do the necessary tests and therefore could give me a correct diagnosis and treatment. this is such an important issue for me! my doctor said that i gave her quite the scare- it was a close call. i hope that i can encourage people to stand up for themselves and get the care and treatment that they need.
in his season of thanksgiving, i am thankful for my family and friends. i am grateful for having more time to be with them. i try to express gratitude for all of the good things that come my way. i try to be mindful of what i am doing and how it affects others. and last, but not least, i am appreciative of the strength that i did not know that i had. i have been through quite a lot, but i am tougher than i ever could have imaged- before i got sick. people like to say that cancer does not define them. well, it may not define me, but it might be said that it changed the definition of "me".
happy thanksgiving to all of my family and friends. may this time be one of joy and peace for you and your family.
Saturday, November 1, 2014
".....i look at the world and i notice it turning, while my guitar gently weeps. with every mistake, we must surely be learning, still my guitar gently weeps. .... i look at you all see the love that is sleeping, while my guitar gently weeps. " while my guitar gently weeps, by my favorite, and the best( in my opinion) beatle- george harrison
i have made my share of mistakes with my thyroid cancer.( the main one being, why did i wait 5 years to change doctors when i knew in my heart that i was sick and nothing was being done about it?) that is why i am so passionate and persistent when i know that someone else is struggling with questions about their own treatment. things like, " do i need surgery?" " do i need the RAI( basically, radioactive chemotherapy) afterwards?" " what kind of thyroid medication do i need going forward?" " how often do i need to be tested afterwards?". these are difficult questions, and certainly depend on the individual. there are so many variables to consider.
i think that most everyone would agree that when they find out that they have thyroid cancer they accept the fact that they need the surgery. but i know two people who rushed into surgery and as a result have had major problems with scarring, and repeat surgeries. one thing that my surgeon was adamant about, thank goodness, was the fact that it was ALL coming out( along with two parathyroids and 11 lymph nodes, but hey, who is counting?). i asked him if he could just take out " the cancerous side" and he said absolutely not! and he was correct- the other side of my thyroid had a cancerous tumor also, so small that it was not seen on ultrasound so not biopsied until after my surgery.that would have meant, as it did for the two people that i mentioned, that i would have had to be opened up twice, and go through everything again. no thanks- once was enough. bottom line, if you have thyroid cancer, please have it all removed and by someone who has done many thyroid cancer surgeries, i.e. they know what the heck they are doing!
RAI seems to be a hot topic. no pun intended. one issue associated with the RAI is that some people opt out of having it. my endocrinologist said that " even the most brilliant surgeon can not get all of the thyroid cancer cells". ( when i told my surgeon this, his big old ego did not like it very much. oh,well). another factor in the decision making process is, has the cancer spread? are the tumors encapsulated? in my case, it was yes to the first ( lymphatic system) and no to the second ( my tumors were unencapsulated and had caused such a spill that i doubt even the most talented hazmat team could have mopped it up ) . that made the decision easier for me. in other words, i would have been rather foolhardy not to have had it. now, RAI is not without side effects. one well meaning person told me " oh you are so lucky to be able to have this! just one little pill, it kills all the thyroid cancer cells, and no side effects!" IF ONLY. yes, it does kill a lot of the thyroid cancer cells .but some of them, the rogue ones ( the sarah palin ones, if you will), decide to take a vacation somewhere else in your body- their favorite locations being the lungs and bones. the side effects that i personally had from my RAI dose( i had a rather large one- 155 millicuries, 100 millicuries being the usual) were nausea after the dose, headache and general tiredness. after about a year, i started having salivary gland issues. i have had trouble with salivary stones- red, painful swelling in the jaw area. sour lemon candy, lemonade, heat and ibuprofen help, and i have not yet gotten rid of them. i just accept that it is something that i may have to deal with long term. if i had know all of this before, would i have still had the RAI? yes, definitely.
if you do not have a thyroid gland, you have to supplement with a thyroid replacement hormone pill. some well meaning people( they live in the same tribe, i think) have said " oh, wow, since you do not have a thyroid, you do not have to take any medicine now, right?" i used to try to give a short science lesson to these well meaning people, but when their eyes glassed over, i just decided that i needed to say, well actually i am on a thyroid supplement for life. as for the debate over name brand, generic, naturally derived,etc., i am pretty sick of hearing about this. for me, levoxyl, a brand name, has
worked best. i have tried all of them( brand, naturally derived, generic,etc ) as well as the cytomel. the cytomel and levoxyl combo worked well for me for a time. this was before i knew that i had cancer. i needed an afternoon dose of the cytomel to just get through the day. but now, i am on a bigger dose of the levoxyl, a suppression dose, so i do not need the cytomel. at my six months visit with my endo ( last month) my endo said that when i did not need to be suppressed any more, if that time ever comes, she would prescribe some cytomel for me since she will be going down on my levoxyl dose. i think that everyone is different and one size does not fit all. i have said this before. if armour works best for you, great! if you love synthroid, great! it sort of reminds me of the great "mommy debate". the "stay at homers"versus the" moms who work". it is an individual decision and we should not judge others on what they decide works best for them.
the "how often do i need to be tested?" question depends on the individual, the severity of the disease, and the physician. i think that this question should ultimately be answered by the patient, though. how comfortable are you with your care after the surgery, RAI, scans,etc. i try to be somewhere in the middle of" neurotic"and" could care less". for me, although the six months testing is nerve racking, it makes the most sense in my case. i feel that my doctor is giving me excellent care, and with a 35% recurrence rate associated with my cancer, i hope that if it does come back, it can be caught early and treated successfully.
i guess that one line of this wonderful song does apply to my blog today: " with every mistake, we must surely be learning". it is good to learn from your mistakes, make better decisions, and move on. no matter what the tribe of well meaning people may think.
i think that most everyone would agree that when they find out that they have thyroid cancer they accept the fact that they need the surgery. but i know two people who rushed into surgery and as a result have had major problems with scarring, and repeat surgeries. one thing that my surgeon was adamant about, thank goodness, was the fact that it was ALL coming out( along with two parathyroids and 11 lymph nodes, but hey, who is counting?). i asked him if he could just take out " the cancerous side" and he said absolutely not! and he was correct- the other side of my thyroid had a cancerous tumor also, so small that it was not seen on ultrasound so not biopsied until after my surgery.that would have meant, as it did for the two people that i mentioned, that i would have had to be opened up twice, and go through everything again. no thanks- once was enough. bottom line, if you have thyroid cancer, please have it all removed and by someone who has done many thyroid cancer surgeries, i.e. they know what the heck they are doing!
RAI seems to be a hot topic. no pun intended. one issue associated with the RAI is that some people opt out of having it. my endocrinologist said that " even the most brilliant surgeon can not get all of the thyroid cancer cells". ( when i told my surgeon this, his big old ego did not like it very much. oh,well). another factor in the decision making process is, has the cancer spread? are the tumors encapsulated? in my case, it was yes to the first ( lymphatic system) and no to the second ( my tumors were unencapsulated and had caused such a spill that i doubt even the most talented hazmat team could have mopped it up ) . that made the decision easier for me. in other words, i would have been rather foolhardy not to have had it. now, RAI is not without side effects. one well meaning person told me " oh you are so lucky to be able to have this! just one little pill, it kills all the thyroid cancer cells, and no side effects!" IF ONLY. yes, it does kill a lot of the thyroid cancer cells .but some of them, the rogue ones ( the sarah palin ones, if you will), decide to take a vacation somewhere else in your body- their favorite locations being the lungs and bones. the side effects that i personally had from my RAI dose( i had a rather large one- 155 millicuries, 100 millicuries being the usual) were nausea after the dose, headache and general tiredness. after about a year, i started having salivary gland issues. i have had trouble with salivary stones- red, painful swelling in the jaw area. sour lemon candy, lemonade, heat and ibuprofen help, and i have not yet gotten rid of them. i just accept that it is something that i may have to deal with long term. if i had know all of this before, would i have still had the RAI? yes, definitely.
if you do not have a thyroid gland, you have to supplement with a thyroid replacement hormone pill. some well meaning people( they live in the same tribe, i think) have said " oh, wow, since you do not have a thyroid, you do not have to take any medicine now, right?" i used to try to give a short science lesson to these well meaning people, but when their eyes glassed over, i just decided that i needed to say, well actually i am on a thyroid supplement for life. as for the debate over name brand, generic, naturally derived,etc., i am pretty sick of hearing about this. for me, levoxyl, a brand name, has
worked best. i have tried all of them( brand, naturally derived, generic,etc ) as well as the cytomel. the cytomel and levoxyl combo worked well for me for a time. this was before i knew that i had cancer. i needed an afternoon dose of the cytomel to just get through the day. but now, i am on a bigger dose of the levoxyl, a suppression dose, so i do not need the cytomel. at my six months visit with my endo ( last month) my endo said that when i did not need to be suppressed any more, if that time ever comes, she would prescribe some cytomel for me since she will be going down on my levoxyl dose. i think that everyone is different and one size does not fit all. i have said this before. if armour works best for you, great! if you love synthroid, great! it sort of reminds me of the great "mommy debate". the "stay at homers"versus the" moms who work". it is an individual decision and we should not judge others on what they decide works best for them.
the "how often do i need to be tested?" question depends on the individual, the severity of the disease, and the physician. i think that this question should ultimately be answered by the patient, though. how comfortable are you with your care after the surgery, RAI, scans,etc. i try to be somewhere in the middle of" neurotic"and" could care less". for me, although the six months testing is nerve racking, it makes the most sense in my case. i feel that my doctor is giving me excellent care, and with a 35% recurrence rate associated with my cancer, i hope that if it does come back, it can be caught early and treated successfully.
i guess that one line of this wonderful song does apply to my blog today: " with every mistake, we must surely be learning". it is good to learn from your mistakes, make better decisions, and move on. no matter what the tribe of well meaning people may think.
Friday, October 24, 2014
" one, two, three, four....... i just want to celebrate another day of living; i just want to celebrate another day of life. ..... don't let it all get you down, no, no. don't let it turn you around, and around, and around. ..... the sun is shining down on me, and it's here to stay. " i just want to celebrate, by rare earth
some of you might have read about this on facebook, that my six months testing is over and i got a good report. ultrasound looks good, and no cancer markers in my blood. i have been hoping to move to yearly testing, but my endocrinologist said that because one type of the thyroid cancer that i had( i had two kinds- papillary and follicular variant) was very aggressive, i need to stay on the six month testing regiment. my doctor said for a while longer, but i am not sure for how long. my doctor is also keeping my TSH suppressed, at 0.006 uIU/ml. wow, how do they even measure a number that small? the reason for this is that my TSH ( stands for thyroid stimulating hormone) needs to be basically zero, because since i have no thyroid, any thyroid cells that could be stimulated would be thyroid cancer cells. sounds great in theory, and i appreciate the fact that my endocrinologist is taking such good care of me. but being suppressed brings some interesting side effects. my free t-4 is high, 1.95 ng/dL, and this puts me in the hyperthyroid category. so, while i do not have heart palpitations, as yet, i have a few other interesting things going on. i feel jittery a lot of the time, i am literally hyper at times, i get grumpy ( sorry, jeff), my vision is a little blurry sometimes, and i do not sleep as well as i once did. and of course the main concern is osteoporosis. with a t-4 this high, my risk for osteoporosis jumps quite a bit. at my next visit, my doctor is going to do a bone density test( oh, goody). i had one a couple of years ago and found that i have a little osteopenia in one of my hips. this is nothing i am extremely worried about, but it is a precursor to full blown osteoporosis.
so, what do i do now? well, i can not take a calcium supplement anymore because i had a kidney stone this year.( while i was supplementing with calcium tablets ). my calcium was low when my doctor did my tests this month. i am going to have to get dietary calcium somehow. i do take a large dose of prescription vitamin D as well as an estrogen supplement- both of which are beneficial to bone health. i also try to exercise as much as my work schedule allows. got to have that zumba- for more reasons than one it seems. i bring this up just in case there is anyone else out there dealing with these issues. i will certainly keep everyone informed of my progress, but i will really not know how well, or poorly, things are going until my next round of six months tests- which will be in april.
i included the " one, two, three, four ," part of the song lyrics because next month i will be a 4 and a half year cancer survivor. i am grateful for every day that i have, and i try to celebrate and enjoy life as much as i can. really it is the simple things in life that make me happy. my family and my friends being at the top of the list. i have never wanted a big fancy house, but i love where i live. it is out in the boonies where i can breathe fresh air and relax when i get home from work. my job is stressful, and i worry about adverse health effects from that, but i like to help people take care of themselves. i like to try to help my patients make good health care choices, and i want them to be educated about their medicines and what they need to do to be healthy. if i can do that, it makes me happy, so i guess that i will continue working for a while longer. my parents were, and now my children are, in education. i used to think that i was the " which one thing is not like the others?" like they say on sesame street. but now, i look at myself as being in health education, so maybe i am not so far removed from my family's profession as i first thought.
i got to visit with my daughter, son in law, and of course one of my grandsons wednesday and thursday- when i went down to raleigh for my tests. today, jeff and i are visiting with our other grandson for the day, and i get to see my son and daughter in law. the weather is beautiful, it is not raining for a change, and i have a lot to be thankful for. it just does not get much better than this.
so, what do i do now? well, i can not take a calcium supplement anymore because i had a kidney stone this year.( while i was supplementing with calcium tablets ). my calcium was low when my doctor did my tests this month. i am going to have to get dietary calcium somehow. i do take a large dose of prescription vitamin D as well as an estrogen supplement- both of which are beneficial to bone health. i also try to exercise as much as my work schedule allows. got to have that zumba- for more reasons than one it seems. i bring this up just in case there is anyone else out there dealing with these issues. i will certainly keep everyone informed of my progress, but i will really not know how well, or poorly, things are going until my next round of six months tests- which will be in april.
i included the " one, two, three, four ," part of the song lyrics because next month i will be a 4 and a half year cancer survivor. i am grateful for every day that i have, and i try to celebrate and enjoy life as much as i can. really it is the simple things in life that make me happy. my family and my friends being at the top of the list. i have never wanted a big fancy house, but i love where i live. it is out in the boonies where i can breathe fresh air and relax when i get home from work. my job is stressful, and i worry about adverse health effects from that, but i like to help people take care of themselves. i like to try to help my patients make good health care choices, and i want them to be educated about their medicines and what they need to do to be healthy. if i can do that, it makes me happy, so i guess that i will continue working for a while longer. my parents were, and now my children are, in education. i used to think that i was the " which one thing is not like the others?" like they say on sesame street. but now, i look at myself as being in health education, so maybe i am not so far removed from my family's profession as i first thought.
i got to visit with my daughter, son in law, and of course one of my grandsons wednesday and thursday- when i went down to raleigh for my tests. today, jeff and i are visiting with our other grandson for the day, and i get to see my son and daughter in law. the weather is beautiful, it is not raining for a change, and i have a lot to be thankful for. it just does not get much better than this.
Sunday, October 5, 2014
"we're off to see the wizard, the wonderful wizard of oz. ...if ever there was a wizard of oz, the wizard of oz is one because, because, because,because.... oh, who knows?" sort of from the wizard of oz
well, it is almost that time again! my big six month check up is coming up in a couple of weeks. it can make my stomach hurt just thinking about it. despite the best intentions of my endocrinologist- and i really do appreciate her care and concern- i get very anxious this time of year. ( april being my other high anxiety month). with about a 35% recurrence rate on my cancer, this is pretty significant. to put this in perspective, my chances of having thyroid cancer were only 5-10% so the doctors said, and look where that got me. at any rate, i want to be mid way on the scale where one extreme is neurotic and the other end is unconcerned. i might just lean a little towards neurotic at times, but i spent five years listening to my former doctor tell me that i was just stressed out and had nothing to worry about. so i guess it is understandable to worry about that knot here, or lump there, a cough, or back pain ( even when i have been lifting my almost 3 year old grandson) occasionally.
instead of complaining today, i am going to pretend that i am Oprah, and tell you some things" i know for sure " about having had cancer. they are in no particular order, but all are important to me.
1). in my early blogs, i mentioned " going to see the wizard" a lot, and likened my disease/ treatment to a walk down the yellow brick road- being in a strange place, and searching for a way back home. well, those days are pretty much over, in that while i am home, i am in a different home. some call this the " new normal". i like to call it an attitude adjustment. i have recognized that i am headed in a new direction, with new rules, but it is not all bad. i have learned that you have to choose happiness, and take charge of your own good health. ( the wizard does not have anything for you in that bag of his- one last reference, sorry :)
2.) stop and take care of yourself. eat good food, rest when you are tired, sleep more, be with the people you love and do the things that you love. ok. that is a lot, but it all falls under the topic of taking good care of yourself. after i got sick, i was amazed at the way i had pretty much ignored myself. i did not make good food choices, i did not exercise, i did not make time for happiness. i do not think that this was the reason i got sick, but it sure did not help me get well.
3.) realize just what is important to you. be grateful for all the little things that make you happy. receive them with an open and grateful heart. focus on the good around you- this is why i stopped watching television for a while. i just read good books, listened to good music , and enjoyed the company of my family and friends. give negative energy the boot!
4.) embrace your spiritual self. pray, meditate, whatever you want to do, but your spirit needs tender care,too. i think that by nurturing this, we can all experience a little peace.
5.) be your own best patient advocate. i tell this to my patients a lot- read, educate yourself on your health, and make informed decisions. this is your body, so you need to be the one who flies the plane.
i would like to take a minute to mention a person that i have been following on facebook. i am not going to mention her name, in respect of her privacy, but i call her the " thyroid cancer warrior princess." this person is an amazing young woman who has been dealing with a very difficult case of thyroid cancer, not responsive to the RAI treatment. she has had thyroid cancer for several years and is now undergoing some very difficult treatment. she has a brave heart and a brave spirit, and is an inspiration to everyone dealing with cancer of any kind. she has been a great patient advocate for herself and her treatment- an example for us all. my prayers and good wishes go out to her, and i wish her much success in her treatment.
well, i have learned a lot on my journey so far. i hope that i can stay strong and positive, and that i am able to face whatever might come my way with dignity and grace. oh, and zumba- gotta have my zumba.
instead of complaining today, i am going to pretend that i am Oprah, and tell you some things" i know for sure " about having had cancer. they are in no particular order, but all are important to me.
1). in my early blogs, i mentioned " going to see the wizard" a lot, and likened my disease/ treatment to a walk down the yellow brick road- being in a strange place, and searching for a way back home. well, those days are pretty much over, in that while i am home, i am in a different home. some call this the " new normal". i like to call it an attitude adjustment. i have recognized that i am headed in a new direction, with new rules, but it is not all bad. i have learned that you have to choose happiness, and take charge of your own good health. ( the wizard does not have anything for you in that bag of his- one last reference, sorry :)
2.) stop and take care of yourself. eat good food, rest when you are tired, sleep more, be with the people you love and do the things that you love. ok. that is a lot, but it all falls under the topic of taking good care of yourself. after i got sick, i was amazed at the way i had pretty much ignored myself. i did not make good food choices, i did not exercise, i did not make time for happiness. i do not think that this was the reason i got sick, but it sure did not help me get well.
3.) realize just what is important to you. be grateful for all the little things that make you happy. receive them with an open and grateful heart. focus on the good around you- this is why i stopped watching television for a while. i just read good books, listened to good music , and enjoyed the company of my family and friends. give negative energy the boot!
4.) embrace your spiritual self. pray, meditate, whatever you want to do, but your spirit needs tender care,too. i think that by nurturing this, we can all experience a little peace.
5.) be your own best patient advocate. i tell this to my patients a lot- read, educate yourself on your health, and make informed decisions. this is your body, so you need to be the one who flies the plane.
i would like to take a minute to mention a person that i have been following on facebook. i am not going to mention her name, in respect of her privacy, but i call her the " thyroid cancer warrior princess." this person is an amazing young woman who has been dealing with a very difficult case of thyroid cancer, not responsive to the RAI treatment. she has had thyroid cancer for several years and is now undergoing some very difficult treatment. she has a brave heart and a brave spirit, and is an inspiration to everyone dealing with cancer of any kind. she has been a great patient advocate for herself and her treatment- an example for us all. my prayers and good wishes go out to her, and i wish her much success in her treatment.
well, i have learned a lot on my journey so far. i hope that i can stay strong and positive, and that i am able to face whatever might come my way with dignity and grace. oh, and zumba- gotta have my zumba.
Monday, September 8, 2014
one size fits all?? no, i do not think so!!
i have been upset about the "endocrinologist" bashing that has been going on by one well known thyroid patient advocate, and i find that i must put my two cents in on this subject. i will say upfront, that i admire this patient advocate, and appreciate her efforts on behalf of all of the thyroid patients out there. we have not had a voice, and it continues to be a struggle getting people to understand what thyroid/thyroid cancer patients are dealing with. it has also been a struggle getting competent patient care. i am disappointed in her opinion( which counts for a lot- and influences many people) that ALL endocrinologists are incompetent, uncaring physicians who look only at lab values and are not concerned with doing what is best for their patients.
i am going to relate my personal story about what i had to do to receive good patient care. i also would like to say that in my pharmacy practice, i talk to many people who have thyroid and thyroid cancer issues. some see endocrinologists, some see their primary care physicians,etc. but i would never suggest that they see ONLY an endocrinologist, if they feel that they are well and getting good patient care. this is a personal issue- and ONE SIZE DEFINITELY DOES NOT FIT ALL!! - in this situation. if a patient is unhappy with the care, or lack of, they are receiving for their thyroid issues, i will definitely suggest that they seek out a second, third, or even fourth opinion. i encourage everyone to be their OWN patient advocate. it is hard work, it is not easy- you have to stand up for yourself, or make someone angry, but it is your life or the quality of your life that is at stake here. o.k., that said, on to my story....
about 5 years ago, i was seeing an endocrinologist in western north carolina. he was personally a nice man, but he did not take my concerns seriously. he told me that i was just " stressed" and that was the reason i was feeling so extremely tired, weak, forgetful,etc, all of the time. i tried another physician in this practice, and was basically told the same thing. so once every year, i would go back and be told, after blood work and an exam, that even though my blood work was " strange", it was because my life was so stressful ( stressful job, and i was taking care of my mother, who was dying of cancer). this went on, unfortunately, for about 5 years. i wish that i could tell you what event made me decide to get another opinion. it may have been the death of my mother, and the realization that life is short, and we should do our best to take care of ourselves . i love my family, and i want to be there for them. so whatever it was that finally moved me out of my stupor, or denial, i searched a website, ironically from the same patient advocate that i am upset with, and found a physician. i found another ENDOCRINOLOGIST. but this person was in a city four and a half hours away. this physician had many reviews that said things like, " this doctor listens to how i am feeling." or " this doctor does NOT go by tsh or other blood values alone, but takes into account how i am doing when she prescribes my medication".
long story short, you can read my entire blog for the whole story, my new doctor ordered tests and did a biopsy. it was discovered that i had stage three, papillary cancer with follicular variant, which had spread to my lymphatic system and to two of my parathyroids. my surgery lasted almost 5 hours and was one of the most difficult ones my surgeon, who is head of the cancer department at the large hospital that i went to, had ever done.( his words- in his surgery notes) . there is no doubt in my mind that if i had continued to go to my old doctor, that i would not be here today! my endocrinologist is a caring physician, who prescribes my medication based on HOW I AM FEELING, but of course, also with my lab work in mind. i am a four year survivor as of this year. i still have to go back every six months for an ultrasound and blood work because my doctor said that my cancer was aggressive, and the risk of recurrence does not go away after five years or whatever, but could come back at any time. the testing is stressful, but i am happy that i go to a physician who truly cares about me and the care that i receive. does that mean that i will unquestionably accept everything that she says? not a chance! we " negotiate" my medication dosage on a regular basis. i respect her opinion, and she respects how i am feeling. we usually come up with a solution that is good for us both. even when you find the right doctor, you still have to be your own best patient advocate!
so my final point, and then i will get off of my soap box, is that endocrinologists can be an excellent choice for thyroid patients. these doctors primarily deal with thyroid and diabetes patients. that is what they specialize in. for me, it is a good choice, even though i had to go through a few to find the physician who was right for me. i think that if a patient is satisfied with a doctor, who is NOT an endocrinologist, then, great! just be sure that as a patient, you are receiving good care and that your physician takes into account how you are feeling and not just the lab values. so, do i believe that one size fits all? ABSOLUTELY NOT!!
i am going to relate my personal story about what i had to do to receive good patient care. i also would like to say that in my pharmacy practice, i talk to many people who have thyroid and thyroid cancer issues. some see endocrinologists, some see their primary care physicians,etc. but i would never suggest that they see ONLY an endocrinologist, if they feel that they are well and getting good patient care. this is a personal issue- and ONE SIZE DEFINITELY DOES NOT FIT ALL!! - in this situation. if a patient is unhappy with the care, or lack of, they are receiving for their thyroid issues, i will definitely suggest that they seek out a second, third, or even fourth opinion. i encourage everyone to be their OWN patient advocate. it is hard work, it is not easy- you have to stand up for yourself, or make someone angry, but it is your life or the quality of your life that is at stake here. o.k., that said, on to my story....
about 5 years ago, i was seeing an endocrinologist in western north carolina. he was personally a nice man, but he did not take my concerns seriously. he told me that i was just " stressed" and that was the reason i was feeling so extremely tired, weak, forgetful,etc, all of the time. i tried another physician in this practice, and was basically told the same thing. so once every year, i would go back and be told, after blood work and an exam, that even though my blood work was " strange", it was because my life was so stressful ( stressful job, and i was taking care of my mother, who was dying of cancer). this went on, unfortunately, for about 5 years. i wish that i could tell you what event made me decide to get another opinion. it may have been the death of my mother, and the realization that life is short, and we should do our best to take care of ourselves . i love my family, and i want to be there for them. so whatever it was that finally moved me out of my stupor, or denial, i searched a website, ironically from the same patient advocate that i am upset with, and found a physician. i found another ENDOCRINOLOGIST. but this person was in a city four and a half hours away. this physician had many reviews that said things like, " this doctor listens to how i am feeling." or " this doctor does NOT go by tsh or other blood values alone, but takes into account how i am doing when she prescribes my medication".
long story short, you can read my entire blog for the whole story, my new doctor ordered tests and did a biopsy. it was discovered that i had stage three, papillary cancer with follicular variant, which had spread to my lymphatic system and to two of my parathyroids. my surgery lasted almost 5 hours and was one of the most difficult ones my surgeon, who is head of the cancer department at the large hospital that i went to, had ever done.( his words- in his surgery notes) . there is no doubt in my mind that if i had continued to go to my old doctor, that i would not be here today! my endocrinologist is a caring physician, who prescribes my medication based on HOW I AM FEELING, but of course, also with my lab work in mind. i am a four year survivor as of this year. i still have to go back every six months for an ultrasound and blood work because my doctor said that my cancer was aggressive, and the risk of recurrence does not go away after five years or whatever, but could come back at any time. the testing is stressful, but i am happy that i go to a physician who truly cares about me and the care that i receive. does that mean that i will unquestionably accept everything that she says? not a chance! we " negotiate" my medication dosage on a regular basis. i respect her opinion, and she respects how i am feeling. we usually come up with a solution that is good for us both. even when you find the right doctor, you still have to be your own best patient advocate!
so my final point, and then i will get off of my soap box, is that endocrinologists can be an excellent choice for thyroid patients. these doctors primarily deal with thyroid and diabetes patients. that is what they specialize in. for me, it is a good choice, even though i had to go through a few to find the physician who was right for me. i think that if a patient is satisfied with a doctor, who is NOT an endocrinologist, then, great! just be sure that as a patient, you are receiving good care and that your physician takes into account how you are feeling and not just the lab values. so, do i believe that one size fits all? ABSOLUTELY NOT!!
Wednesday, September 3, 2014
it's just a pain in the neck, you know?
today, i went to my first physical therapy session for the pain in my neck and headaches that i have been having. i tried ibuprofen, a new pillow( always contour- better for your neck), and ice packs. then i was in so much pain that i tried the last resort- i went to my doctor, lol. i was pretty sure that what had caused this neck pain/headaches is the fact that i am on the phone a LOT for my job, and we do not have headsets. we did not even have the neck rests that attach to the phone until a couple of weeks ago- i bought those myself. it helped a little, but i realized that i needed more help. so my doctor sent me on to physical therapy, which i like WAY better than pain medicine. but that is another blog, so i will move on.
i first had to fill out a pretty extensive medical history. first question: what activity makes your neck pain worse? my actual answer: going to work. next question: what activity makes your neck pain better? also my actual answer: getting off work. i also drew a smiley face here. despite this, my physical therapist took my situation seriously, thank goodness, and had some very interesting insights. first of all, he said that all the people who work at his office ( at the desk) have headsets regardless of whether they have neck pain or not. so he said that he hoped that my employer would come through with a headset for me( it is still in the review process). in my medical history, i mentioned my thyroid cancer surgery and the radioactive " chemo" that i received( a very big dose, by the way). the physical therapist said that he really thought that my neck issues had occurred from the surgery( who knows what is missing, besides my thyroid, 2 parathyroids, and 11 lymph nodes) AND the radioactive I-131. the I-131 damages the tissues and muscles, which i did not know until today, but i guess i should have guessed that it could do that.
the therapist said that i have neck issues from the surgery and treatment that have gone unaddressed ( his exact words) since my surgery in 2010! the phone situation at work just precipitated an already existing condition. so, what i want everyone to know who might read this blog, is to take care of your neck! if you have on going neck pain and headaches, one or both, you should see your doctor! ask your doctor to write an order for you to receive physical therapy. my therapist used traction on my neck today. i will not lie to you, it was not comfortable( it looked like an instrument of torture). but when i finished with the 15 minutes or so of traction on a low setting, i had a little better range of motion in my neck. he showed me some exercises to do at home, also. i think that i will see improvement ( i sure hope, that is) in about 4 to 5 weeks of physical therapy. after that, it is up to me to keep up with the exercises, and of course pray for a headset!
sometimes i am surprised at what all thyroid cancer patients have to deal with! no, it is not the good cancer at all! there are unexpected health issues that are not always addressed, or even recognized, by our doctors or ourselves. we have to be our own patient advocate, as i have said before. you have to stand up for yourself, and for the good patient care that we all deserve. i sincerely hope that this helps someone, and i will certainly keep everyone informed about my " neck progress". oh, i did get great news today. i can go back to zumba class- i just have to avoid any " neck moves". the physical therapist said i should just maybe " wave my arms around" during those parts. ha,ha,ha- do you think that he has ever been to a zumba class???? :D
Saturday, August 30, 2014
"they say it's your birthday; we're going to have a good time, yes we are going to party, party, party......take a cha-cha-cha- chance, i would like you to dance; i'm glad it's your birthday, happy birthday to you." by the beatles, of course
yesterday was my birthday. i received a lot of happy birthday messages from my friends and facebook friends. i am very grateful for these well wishes, and i am very happy to have another birthday to celebrate, considering what i have been through over the past 4 years. i did not always like my birthday ( getting older) as much as i do now. but of course, a lot of things have changed. my attitude and my whole outlook on life, for one. i am so thankful for all the little things in life- good food, good friends, family, a cool breeze that happens by on a hot afternoon. things that i took for granted before, but not now.
in october, i go for another six month blood work and ultrasound check. these checkups are very stressful for me, as i am sure they are for everyone, but i am happy that my endocrinologist is taking such good care of me. i had stage three papillary, with follicular variant thyroid cancer , as well as cancer in two of my parathyroids. this is why i am still going back for six month check ups even though it has been four years since my diagnosis. some people think that five years is the " magic number" and i asked my doctor about this. she said unfortunately, she had a patient who had a recurrence after 7 years. so i guess i will just forget about any particular time frame, and just be happy i am seeing a doctor who cares about me.
i have not been able to go to my zumba class in a month or so, and that is affecting my mood.( and not in a good way- ask my husband !) . i hurt my neck at work ( easy to do perhaps, as there is not as much support in my neck as there used to be) using the telephones so much. i am going to physical therapy starting next week, and have asked the company i work for, at my doctor's suggestion, for a headset. i hope they come through with it. i find that zumba class, even just once or twice a week, improves my mood considerably. it is my " prozac", as i have said before. before i got sick, i did not take such good care of myself. i did not eat well, nor did i exercise. since being sick, i have tried several "strategies" you might call them, in hopes of improving my overall health. i have found that eating well, exercising, being grateful for all the good things that come my way, prayer, and time spent with family and friends have made me feel better. i do not know if these things have necessarily help me fight cancer, but i do believe that they are at least part of me being in remission these past four years.
i am hoping to add " getting more sleep" and "meditation" to my list of good things to do for myself . i think that these two things are very important, but i am still a work in progress, as the saying goes. it is hard to do everything at once, and really, overwhelming, but worth the effort in the end. i could also add " managing or cutting down on stress" to the list, but anyone with a full time job- especially one where you deal with the public, knows just how hard that is!
yesterday my husband and i celebrated my birthday quietly, but happily. today, my whole family- including my two precious grandsons, will be here for a rowdy and happy birthday celebration. i am thankful that they will all be here to remind me of all the good things in my life, and the most important,too. and i certainly intend to enjoy and relish every single minute with all of them!
in october, i go for another six month blood work and ultrasound check. these checkups are very stressful for me, as i am sure they are for everyone, but i am happy that my endocrinologist is taking such good care of me. i had stage three papillary, with follicular variant thyroid cancer , as well as cancer in two of my parathyroids. this is why i am still going back for six month check ups even though it has been four years since my diagnosis. some people think that five years is the " magic number" and i asked my doctor about this. she said unfortunately, she had a patient who had a recurrence after 7 years. so i guess i will just forget about any particular time frame, and just be happy i am seeing a doctor who cares about me.
i have not been able to go to my zumba class in a month or so, and that is affecting my mood.( and not in a good way- ask my husband !) . i hurt my neck at work ( easy to do perhaps, as there is not as much support in my neck as there used to be) using the telephones so much. i am going to physical therapy starting next week, and have asked the company i work for, at my doctor's suggestion, for a headset. i hope they come through with it. i find that zumba class, even just once or twice a week, improves my mood considerably. it is my " prozac", as i have said before. before i got sick, i did not take such good care of myself. i did not eat well, nor did i exercise. since being sick, i have tried several "strategies" you might call them, in hopes of improving my overall health. i have found that eating well, exercising, being grateful for all the good things that come my way, prayer, and time spent with family and friends have made me feel better. i do not know if these things have necessarily help me fight cancer, but i do believe that they are at least part of me being in remission these past four years.
i am hoping to add " getting more sleep" and "meditation" to my list of good things to do for myself . i think that these two things are very important, but i am still a work in progress, as the saying goes. it is hard to do everything at once, and really, overwhelming, but worth the effort in the end. i could also add " managing or cutting down on stress" to the list, but anyone with a full time job- especially one where you deal with the public, knows just how hard that is!
yesterday my husband and i celebrated my birthday quietly, but happily. today, my whole family- including my two precious grandsons, will be here for a rowdy and happy birthday celebration. i am thankful that they will all be here to remind me of all the good things in my life, and the most important,too. and i certainly intend to enjoy and relish every single minute with all of them!
Saturday, July 19, 2014
" all i wanna do is have a little fun before i die- says the man next to me out of nowhere. it's apropos of nothing. but all i wanna do, is have some fun. i got a feeling, i'm not the only one. " All i wanna do, by Sheryl Crow
this seemed like a pretty good title for this blog, especially because Sheryl Crow is a cancer survivor herself. she did not have cancer, though, when she wrote this song. perhaps it means more to her now than it did then? at any rate, i have been feeling like this increasingly, more and more. my husband and i were fortunate enough to take a "big" vacation this year. we ticked something off of his bucket list- to visit alaska. now, i am a very cold natured person, as anyone at work will tell you. it came as a surprise to most people that i would go there( they had me pegged as an Hawaiian person, i think). it was important to him that we visit alaska while we were still young enough to do stuff. i knew that there would be beautiful scenery, of course, but i really had no idea that i would enjoy it as much as i did.
i prepared for the cold as well as i could( you know those wacky, thyroid-less people). my husband and i bought heavy, down- filled coats for christmas presents last year. i also bought insulated underwear, insulated tee shirts, hats, gloves,etc. my husband called me "three shirts" while we were up there because every day i wore( in this order): my insulated silk underwear shirt, then a long sleeved tee shirt, and finally an insulated tee shirt( have i ever mentioned how much i love LL bean?) so, i managed to have a great time and still be reasonably warm. we flew into anchorage, and then rented a car and did our own thing. we had a few " booked events"- the all day glacier tour, which seems to be mandatory for all visitors to alaska. along with the all day salmon fishing float trip. it was raining most of the time, or at least cloudy, while we were there. we did manage to join the 30% club when we visited Denali. ( only 30% of all who visit get to see the top of mt McKinley). we hiked almost every day- the most miles in a day that we did was about ten- thanks to zumba class, i was able to keep up!
we saw a lot of wildlife,too ( of course i see a lot where i work, but they are the two legged kind). thankfully, we did not see any grizzlies close up and personal- we saw them from a distance. we did however get pretty close to some moose(s)? one being right outside the kitchen window of one of the cabins we rented. the last place that we stayed was the most remote. it's claim to fame was that it was near the matanuska glacier which was off of the glennallen highway( on the way to fairbanks). now that was just about as remote as i want to get. it was interesting, though, and we actually got to walk on the glacier. i did not walk out too far because when i was passed up by some people wearing helmets, cleated shoes, and carrying walking sticks that looked like harpoons, i decided that i was almost in over my head so i turned back.
a very good friend of mine has been to alaska several times. i sent him some of my pictures while we were there( when he was at work ) . he said " bea, you are killing me!" the last time i talked to him, he was already planning his next trip there. i understand the attraction of going somewhere wild and free like alaska. i definitely would consider going there again- but before too long. i want to be able to hike and do other physical activities that my husband and i enjoy.
this brings me to the real " meat" of this blog. and that is that we all need to have more fun in our lives. my husband and i work really hard, as do most people. we love our family and put them first of course, but work pretty much calls the shots the rest of our time. i am getting near retirement age and having had a serious illness, i have reevaluated what is most important in my life. i love my job in that i get to help others take care of themselves and perhaps feel better. but, as is the case in every job, things change. there is more paperwork, duties that i do not want to pursue, and frankly i do not want to spend so many hours working! all i want to do, is have a little more fun. and i do not have to go to alaska (necessarily). i want to take short trips, plant a garden, take hikes, get to zumba class more than once a week, etc. not to be morose, but who of us knows how much sand is in our hourglass? i think people are sort of programmed to put work first, and have fun later. that is just not working for me anymore.
i get to pick out our next big trip. it will either be out west- to see the giant redwoods, or to scotland ( the place where my first relatives called home). i am not sure where i want to go as yet. but, in the mean time, i just want to have more fun- wherever i am and whatever i might be doing. i want to be able to say, " damn, i sure did have fun!"
i prepared for the cold as well as i could( you know those wacky, thyroid-less people). my husband and i bought heavy, down- filled coats for christmas presents last year. i also bought insulated underwear, insulated tee shirts, hats, gloves,etc. my husband called me "three shirts" while we were up there because every day i wore( in this order): my insulated silk underwear shirt, then a long sleeved tee shirt, and finally an insulated tee shirt( have i ever mentioned how much i love LL bean?) so, i managed to have a great time and still be reasonably warm. we flew into anchorage, and then rented a car and did our own thing. we had a few " booked events"- the all day glacier tour, which seems to be mandatory for all visitors to alaska. along with the all day salmon fishing float trip. it was raining most of the time, or at least cloudy, while we were there. we did manage to join the 30% club when we visited Denali. ( only 30% of all who visit get to see the top of mt McKinley). we hiked almost every day- the most miles in a day that we did was about ten- thanks to zumba class, i was able to keep up!
we saw a lot of wildlife,too ( of course i see a lot where i work, but they are the two legged kind). thankfully, we did not see any grizzlies close up and personal- we saw them from a distance. we did however get pretty close to some moose(s)? one being right outside the kitchen window of one of the cabins we rented. the last place that we stayed was the most remote. it's claim to fame was that it was near the matanuska glacier which was off of the glennallen highway( on the way to fairbanks). now that was just about as remote as i want to get. it was interesting, though, and we actually got to walk on the glacier. i did not walk out too far because when i was passed up by some people wearing helmets, cleated shoes, and carrying walking sticks that looked like harpoons, i decided that i was almost in over my head so i turned back.
a very good friend of mine has been to alaska several times. i sent him some of my pictures while we were there( when he was at work ) . he said " bea, you are killing me!" the last time i talked to him, he was already planning his next trip there. i understand the attraction of going somewhere wild and free like alaska. i definitely would consider going there again- but before too long. i want to be able to hike and do other physical activities that my husband and i enjoy.
this brings me to the real " meat" of this blog. and that is that we all need to have more fun in our lives. my husband and i work really hard, as do most people. we love our family and put them first of course, but work pretty much calls the shots the rest of our time. i am getting near retirement age and having had a serious illness, i have reevaluated what is most important in my life. i love my job in that i get to help others take care of themselves and perhaps feel better. but, as is the case in every job, things change. there is more paperwork, duties that i do not want to pursue, and frankly i do not want to spend so many hours working! all i want to do, is have a little more fun. and i do not have to go to alaska (necessarily). i want to take short trips, plant a garden, take hikes, get to zumba class more than once a week, etc. not to be morose, but who of us knows how much sand is in our hourglass? i think people are sort of programmed to put work first, and have fun later. that is just not working for me anymore.
i get to pick out our next big trip. it will either be out west- to see the giant redwoods, or to scotland ( the place where my first relatives called home). i am not sure where i want to go as yet. but, in the mean time, i just want to have more fun- wherever i am and whatever i might be doing. i want to be able to say, " damn, i sure did have fun!"
Wednesday, June 11, 2014
my tribute to Esther Grace Earl- the real thyroid cancer hero ( in my opinion)
the movie, " the fault in our stars" is very popular now. the book, by john green, is a wonderful book i have heard. the ending is different than the book( i have also heard that). i debated on if i should read this book and/or see the movie. i am a 4 year thyroid cancer survivor, which those of you who read my blog know, but i am still going back to my endo every six months for re-checks. in other words, this seemed a little bit too close to home for me. esther grace earl's cancer was the same as mine: papillary with follicular variant, which is fairly common i believe. i was stage three; unfortunately for this lovely young woman, hers was stage four and she had metastatic disease- it had gone to her lungs.
after much debate, i decided to read esther's book, "this star won't go out" first. i know it is heart breaking, but it is true. this young woman had more courage than just about anyone i have ever heard of. she was an inspiration to us all, and intentionally or not, she has gotten the word out about thyroid cancer. how anyone could say now that thyroid cancer " is the good cancer" after reading the books or seeing the movie is beyond me. one thing i did hear about the movie is that the character did not mention thyroid cancer directly, nor did she have a scar on her neck. nonetheless, there have been several articles- on facebook and magazines- that focus on the real person behind this movie/book.
esther ended her brave journey with thyroid cancer the same year as i began mine- in 2010. i can not imagine being a parent and losing a child ( i still think 16 is a child). her parents have bravely continued to honor her memory with a foundation called, like the book, this star won't go out. esther was forthcoming with her disease and challenges with videos on youtube. it seems that her parents continue the practice of openness ,and by doing so, have helped many others.
one thing that i have learned, and continue to learn,is that no matter how sick you are, there is always someone who has more serious issues to deal with than you do. when my hair was thinning and falling out in clumps, i just had to take a look at the brave, yet bald, women who came in my pharmacy. that put things in perspective for me.
esther might not have thought that she was a hero, but she is to me. and i am certain that she is to many others. she is the face of " thyroid cancer is not the good cancer". she has fought the good fight with grace, bravery and a sense of humor. having traveled down the thyroid cancer road, i have learned to be thankful for every good that comes my way on this journey. i am thankful for esther.
after much debate, i decided to read esther's book, "this star won't go out" first. i know it is heart breaking, but it is true. this young woman had more courage than just about anyone i have ever heard of. she was an inspiration to us all, and intentionally or not, she has gotten the word out about thyroid cancer. how anyone could say now that thyroid cancer " is the good cancer" after reading the books or seeing the movie is beyond me. one thing i did hear about the movie is that the character did not mention thyroid cancer directly, nor did she have a scar on her neck. nonetheless, there have been several articles- on facebook and magazines- that focus on the real person behind this movie/book.
esther ended her brave journey with thyroid cancer the same year as i began mine- in 2010. i can not imagine being a parent and losing a child ( i still think 16 is a child). her parents have bravely continued to honor her memory with a foundation called, like the book, this star won't go out. esther was forthcoming with her disease and challenges with videos on youtube. it seems that her parents continue the practice of openness ,and by doing so, have helped many others.
one thing that i have learned, and continue to learn,is that no matter how sick you are, there is always someone who has more serious issues to deal with than you do. when my hair was thinning and falling out in clumps, i just had to take a look at the brave, yet bald, women who came in my pharmacy. that put things in perspective for me.
esther might not have thought that she was a hero, but she is to me. and i am certain that she is to many others. she is the face of " thyroid cancer is not the good cancer". she has fought the good fight with grace, bravery and a sense of humor. having traveled down the thyroid cancer road, i have learned to be thankful for every good that comes my way on this journey. i am thankful for esther.
Saturday, May 17, 2014
".... say what you wanna say and let the words fall out, honestly i wanna see you be brave. i just wanna see you be brave. " brave, by sara bareilles
on monday, may 19th, i will officially be a four year thyroid/parathyroid cancer survivor! i have to work that day, so i wanted to write a blog today. i have learned, and continue to learn, a lot about being a survivor. i have always been grateful for my treatment, doctors, friends, and especially my family who have helped me along my cancer journey. i have also been grateful for every day that i get to be here on this earth- it is truly a gift and i really do try to do something good every day, even if it is a small thing( and it usually is). i think about the small things that people- sometimes strangers - did for me when i was so sick, and i realize that small things do matter, and sometimes make all the difference in the world.
i have decided that it is hard to be a survivor, hard to be brave. when you are first confronted with your disease and are deciding about treatment options,etc. that is all that you can think about. you can only think about getting from point a to point b. you are not quite sure if " long range plans" are in your future at this point. you are just trying to deal with a diagnosis that you hoped would never come your way. but as things progress, and you realize that you just might be able to survive this thing, new challenges pop up. cancer forces everyone, i think, to decide if they are happy with their life. what do you want to do? what is important to you? you may have limited time( although we all are faced with that ) so do you really want to stay the course, or do you want to head off in some new direction that would be better for you as a person? i always felt that i knew what was important in my life and what made me happy. but having a serious illness really makes you take a hard look at your life and what you need to be doing.
i have always tried to take care of my family. i have been happy with the work that i do, and i enjoy helping others take care of themselves, but guess what? i was neglecting my own good health and well being. i realized, from that moment that i was too weak after my cancer surgery to pick up my dog's water bowl, that i needed to get regular physical exercise( zumba was born then! ) . i also realized that i needed to improve my diet and get more sleep/rest. now i am not saying that i do a stellar job with these revelations, but i sure am trying my best. and to be truthful, i feel better not only physically, but also mentally ,than i did before i found out that i had cancer.
do not get me wrong,though- i still have bad days. " low energy" days that so many of my thyroid cancer friends talk about having. i also know that i will have to endure every six months cancer testing for a good while , but i am doing a bit better dealing with that. i tend not to be "looking back, over my shoulder" as much as i used to. i was afraid that cancer was somehow trying to catch up with me again. there is a pretty high recurrence rate with the type of thyroid cancer that i had- 35% i believe. so it is understandable that a person would be concerned with this. but, this can not keep me from enjoying my life and i do not want to obsess with this fact. if it comes back, i will get treatment again and hope for the best.
i am very fortunate to have my faith, the love of my family and friends, and good work to do. this is what i try to focus on, as well as trying to take care of myself for a change. it is hard to be brave- to look forward and not to think about the chances of getting sick again. a positive attitude makes all the difference in your world i think. it has been proven that radical remission patients all have a very positive attitude, and that is part of their success. i am trying to hold on to this positivity in my life- in all things. i am just trying to be brave..........
i have decided that it is hard to be a survivor, hard to be brave. when you are first confronted with your disease and are deciding about treatment options,etc. that is all that you can think about. you can only think about getting from point a to point b. you are not quite sure if " long range plans" are in your future at this point. you are just trying to deal with a diagnosis that you hoped would never come your way. but as things progress, and you realize that you just might be able to survive this thing, new challenges pop up. cancer forces everyone, i think, to decide if they are happy with their life. what do you want to do? what is important to you? you may have limited time( although we all are faced with that ) so do you really want to stay the course, or do you want to head off in some new direction that would be better for you as a person? i always felt that i knew what was important in my life and what made me happy. but having a serious illness really makes you take a hard look at your life and what you need to be doing.
i have always tried to take care of my family. i have been happy with the work that i do, and i enjoy helping others take care of themselves, but guess what? i was neglecting my own good health and well being. i realized, from that moment that i was too weak after my cancer surgery to pick up my dog's water bowl, that i needed to get regular physical exercise( zumba was born then! ) . i also realized that i needed to improve my diet and get more sleep/rest. now i am not saying that i do a stellar job with these revelations, but i sure am trying my best. and to be truthful, i feel better not only physically, but also mentally ,than i did before i found out that i had cancer.
do not get me wrong,though- i still have bad days. " low energy" days that so many of my thyroid cancer friends talk about having. i also know that i will have to endure every six months cancer testing for a good while , but i am doing a bit better dealing with that. i tend not to be "looking back, over my shoulder" as much as i used to. i was afraid that cancer was somehow trying to catch up with me again. there is a pretty high recurrence rate with the type of thyroid cancer that i had- 35% i believe. so it is understandable that a person would be concerned with this. but, this can not keep me from enjoying my life and i do not want to obsess with this fact. if it comes back, i will get treatment again and hope for the best.
i am very fortunate to have my faith, the love of my family and friends, and good work to do. this is what i try to focus on, as well as trying to take care of myself for a change. it is hard to be brave- to look forward and not to think about the chances of getting sick again. a positive attitude makes all the difference in your world i think. it has been proven that radical remission patients all have a very positive attitude, and that is part of their success. i am trying to hold on to this positivity in my life- in all things. i am just trying to be brave..........
Subscribe to:
Posts (Atom)