i saw several posts today on one of the thyroid cancer websites that i belong to, posing the question of how to deal with post thyroid cancer worry. specifically, worry of recurrence of the thyroid cancer or perhaps getting a second primary cancer. i have written about these possibilities in terms of percentages, where in our bodies the thyroid cancer may return, or where we might get a second primary cancer. what i have not really discussed is the way in which we, as cancer survivors, might handle the fear and worry that we face.
i have discovered that the fear and worry of recurrence or having another primary cancer is a day to day challenge. once you have been told once, twice or even three times that you have cancer, your entire world changes. i think that most of us have what i would call a "life foundation." the majority of us know who we are and what our roles are as members of a family group, members of a work group, and what our relationship is with our friends and other social groups. when we have a cancer diagnosis, we are knocked completely off of our life foundation, and onto uncharted ground. nothing is ever "our normal" again. our bodies have betrayed us in the worst way, and somehow we must figure out how to "redirect" ourselves, as my GPS is always telling me when i take a wrong turn on the road.
and getting a handle on the fear and worry truly is a day to day challenge. some days, i can barely make it out of bed. i am beyond tired- my body and my mind hurt. i will admit here that i tend to be a worrier. and not just about myself. you name it, and i have probably worried about it or chances are good that i will worry about it in the future. i know that this is counterproductive to living my best life. i know that worrying will not help in any way, and yet i worry. a thyroid cancer survivor said, on one cancer website, that whenever they get the slightest ache or pain, they are convinced that it is cancer. while this may seem neurotic or over the top for those of you who have not had a cancer diagnosis, i think that it is fairly common for cancer survivors to feel this way. we cancer patients have been knocked off of our life foundation, remember. we have been told the unthinkable, the impossible, the unbelievable and who is to say that this can not happen again?
the challenge, and it really is a day to day process, is to find our balance again, build a new life foundation on which we can stand. how do we do this? i am trying to work this out even as we speak ( or more correctly, as i type). i am so very fortunate to have wonderful support from my family and friends. i find it especially helpful to talk with other cancer survivors. certainly no one wants to be a member of this club, but if you happen to be, these other members will be your very best friends. they will understand what you are going through like no one else possibly could - even your loving and well meaning family members.
i retired a little bit sooner than i had planned to. while i miss the interaction with my co-workers and my patients, i just felt that the job was getting too stressful for me. i felt that i could still do my job well, and that i was not endangering the lives of others, but the work was literally wringing the life out of me. i went home after work and i was exhausted- beyond just being tired. did i really want to live my life this way? i decided that i did not. for others, it might be a good idea to keep on working- it is such a personal decision and there is no right answer. i gave this decision a lot of thought, and i can honestly say that i have no regrets, except for the fact that i do miss the helping people part of my job.
as i said, i am beginning to build a new life foundation for myself. i am getting to spend more time with my family and friends. in my previous profession, i had long hours and had to work some weekends and holidays. being able to say" yes" when i am asked to go somewhere, or even better, when i am asked to take care of my grandchildren has been wonderful. i have started doing some crafts that i enjoy. this gives me a task or purpose, as well as being good for my brain. ( yes, chemo brain does exist). i am showing up for all of my six months tests ( thyroid, breast and skin ), and am trying to take better care of myself. i told my doctor(s ) that i want to be in the middle of a scale of one end being" neurotic" and the other end being " i don't care."
some days i am just happier than other days. some days i think that i have things pretty well figured out, and other days i feel like i haven't got a clue. but i am a work in progress, as the saying goes. i am trying my best to be my best and to stand tall on that new foundation.
Thursday, May 25, 2017
" i'm fixing a hole where the rain gets in, and stops my mind from wandering where it will go....it really does not matter if i'm wrong i'm right, where i belong i'm right where i belong... i'm taking the time for a number of things that weren't important yesterday...i'm fixing a hole where the rain gets in, and stops my mind from wandering, where it will go." fixing a hole, by the beatles
Thursday, May 18, 2017
May: a month to be thankful and celebrate, if you happen to be me. of course, it was not always the case...
as i have said, this is a "2Fer" blog. tomorrow, on may 19th, i will be a seven year thyroid cancer survivor. and on monday, may 22nd, i will be a two year breast cancer survivor. these are the two days that i had my surgeries ( people celebrate their cancerversaries using different guide lines. some use the diagnosis date, some the chemotherapy end date, etc.). i guess that i feel like the date to celebrate is the day that my surgeons removed the cancers from my body. of course, i had treatment with both cancers, but the majority of it was removed the day of my surgeries , or so my surgeons tell me.
besides celebration, yes there will be cake, every month of may i spend some time thinking about how far i have come down this cancer road. it has been a tricky road traveled at times- did i make the right decisions regarding treatment options, surgeons, hospitals, other physicians,etc. i tried my best to keep a level head amid the cancer chaos, but it was not easy. i did my research on the type of cancers that i had and the best way/ places to treat them successfully. but i will admit that sometimes, it was just a matter of faith. that, and a gut feeling that this or that decision was the correct one for me. i like to say that i live by" informed instinct" . i gather all of the information about something that i possibly can, then i listen to my inner voice before making an important decision- especially when it comes to my health.
i can honestly say that if i could go back in time, i would make the exact same decisions regarding my health. no do-overs, no get out of jail cards . i am thankful and grateful to all of my doctors, nurses and other health professionals who helped me along the way. i am blessed with amazing and loving family and friends. my spiritual self is much stronger. i recognize the power and value of prayer. i think that a feeling of being grateful is a huge part of finding peace and happiness after a cancer ( or two) diagnosis. i am not , nor was i ever, angry at what happened to me. but i will admit that at times i was discouraged and depressed. i still struggle with " cancer anxiety" especially around testing time. and man, do i have a lot of testing to deal with! that said, i realize that the testing is part of what i need to do to take good care of myself. i am doing all that i can to be here for my family.
my husband has almost finished building, all by himself, a stained glass tiny house studio for me. i will be doing stained glass projects, as well as soap and candle making in this studio. it is right outside the back door, and it is lovely. the walls are painted a soothing lavender, and the ceiling is hammered tin panels. it has four windows to let in plenty of light, a built in bench, a peg board for my tools, and even a hand crafted craft table . this was truly a labor of love on my husbands part. i am extremely grateful and thankful for this special place that is just for me. i might not be the most talented stained glass/candle/soap maker, but i will probably be the happiest one!
tomorrow, after i have some cake, of course, i will begin to move my craft supplies into my new studio. i see, hopefully, many years of enjoyment, creativity, and yes, gratitude in this special place . i also look forward to many more "mays" spent in this little building that was made primarily of love.
Tuesday, May 9, 2017
the difference between thyroid cancer reccurence and having a second "primary" cancer after having thyroid cancer
i am writing this blog in response to a topic that came up today in a thyroid cancer survivor website.it is confusing differentiating between thyroid cancer recurrence and having a second primary cancer after thyroid cancer. my sources for my statistics come from these websites/publications: Thyca, NIH( national cancer institute), and an article in PMC- " the risk of second cancers after diagnosis of primary thyroid cancer, by Christopher Kim, et.al. May 23, 2013. i ask that all english majors/ teachers out there, including my daughter, to please excuse the format of my bibliography/ sources. my blog is not a formal research paper, but i would like everyone reading this to be aware that i did fact check, and of course you are welcome to check my sources as well. enough about disclosure.
first, i will talk a little about thyroid cancer recurrence. thyroid cancer is sort of unique, i guess, in the fact that thyroid cancer patients need monitoring for the rest of their lives. while the prognosis is generally good, the rate of recurrence can be up to 30% . also, the recurrence can occur many years after diagnosis. my endocrinologist told me that she had a patient, who was doing well for many years, have a recurrence after seven years. recurrent thyroid disease usually occurs in the neck area lymph nodes. it may however, spread to other parts of the body- especially the lungs and bones. here are some more statistics for you, courtesy of the cancer treatment centers of america: of the 30% of patients that do have a recurrence, 80% of those have thyroid cancer in the neck area. the other 20% occur in distant areas of the body ( lungs and bones for example.) here are some signs of recurrent thyroid cancer which may include:
neck swelling- or a lump that grows rapidly
neck pain that starts in the front area of the neck, but may extend to the ears
trouble breathing or swallowing
voice changes or hoarseness
persistent cough
now these symptoms can describe primary thyroid cancer, not only recurrence. and i for one have had some of these symptoms after treatment. this is just a short list. everyone is different, and you may have other symptoms, some of these, or none at all.
now for the, evidently, confusing part. having a second " primary" cancer after having thyroid cancer. a new primary cancer, not composed of thyroid cancer cells, may occur months or years after the original cancer has been diagnosed and treated. patients have anywhere from a 10% to 150% chance of having a second, primary cancer. i prefer the good old 30% statistic, which i think is a good average overall. the question most asked, perhaps, is why? what could cause this second, primary cancer? some suggestions are: the cancer treatment itself- chemotherapy or radiation therapy may cause another cancer. also, having certain gene mutations and being exposed to some cancer causing substances- perhaps tobacco smoke, may flip the cancer causing switch. i think ( hope) that more research will be done in this area so that we may all be able to sleep at night.
i had a second primary cancer ( breast cancer) five years after having my thyroid cancer. i found this statistic when i was doing research for this blog, and it is sobering. " nearly one in five cancers diagnosed today occurs in an individual with a previous diagnosis of cancer, and these second cancers are a leading cause of death among cancer survivors". this statistic is from the NIH, (nation cancer institute) , division of cancer epidemiology and genetics.
after my total thyroidectomy, and the removal of two of my parathyroids which were also cancerous, and eleven lymph nodes, my physician sent me to a radiologist to determine if i needed the RAI treatment. my lymph nodes were clear, but one of my tumors was fairly large- 2cm, multifocal, and unencapsulated . the official report was: focal lymphatic/vascular invasion present, unencapsulated tumors, diffusely infiltrated. translated, my tumors had burst open and were spilling out into my vascular system. i had read about the possibility of breast cancer due to a large dose of the I-131. but, i did not feel, and the radiologist certainly agreed, that i should skip the I-131 dose. the best advice that i read was in a book by m. sara rosenthal. she is a thyroid cancer survivor herself, and she advised that if the radiologist recommended the RAI treatment it was better to get it, then carefully monitor for breast cancer. have all recommended mammograms- take care of yourself, in other words. i do not ask myself why i had breast cancer. i was one of the 30% who have a second primary cancer. was it the I-131 dose? did exposure to some cancer causing substance cause a gene mutation that turned on and caused another cancer? i will never know the answer to this question. i will have to say that for me personally, i would do the I-131 dose again. i had an aggressive type of thyroid cancer- papillary with follicular variant, and i certainly want to do all that i can not to have a recurrence.
this has been a heavy blog, on a difficult subject. i hope that i have answered a few questions. i choose not to live my life in fear, but i want the facts so that i can make informed decisions. next time in my blog, we will talk about rainbows, puppy dogs, and butterflies. and then, maybe not.
first, i will talk a little about thyroid cancer recurrence. thyroid cancer is sort of unique, i guess, in the fact that thyroid cancer patients need monitoring for the rest of their lives. while the prognosis is generally good, the rate of recurrence can be up to 30% . also, the recurrence can occur many years after diagnosis. my endocrinologist told me that she had a patient, who was doing well for many years, have a recurrence after seven years. recurrent thyroid disease usually occurs in the neck area lymph nodes. it may however, spread to other parts of the body- especially the lungs and bones. here are some more statistics for you, courtesy of the cancer treatment centers of america: of the 30% of patients that do have a recurrence, 80% of those have thyroid cancer in the neck area. the other 20% occur in distant areas of the body ( lungs and bones for example.) here are some signs of recurrent thyroid cancer which may include:
neck swelling- or a lump that grows rapidly
neck pain that starts in the front area of the neck, but may extend to the ears
trouble breathing or swallowing
voice changes or hoarseness
persistent cough
now these symptoms can describe primary thyroid cancer, not only recurrence. and i for one have had some of these symptoms after treatment. this is just a short list. everyone is different, and you may have other symptoms, some of these, or none at all.
now for the, evidently, confusing part. having a second " primary" cancer after having thyroid cancer. a new primary cancer, not composed of thyroid cancer cells, may occur months or years after the original cancer has been diagnosed and treated. patients have anywhere from a 10% to 150% chance of having a second, primary cancer. i prefer the good old 30% statistic, which i think is a good average overall. the question most asked, perhaps, is why? what could cause this second, primary cancer? some suggestions are: the cancer treatment itself- chemotherapy or radiation therapy may cause another cancer. also, having certain gene mutations and being exposed to some cancer causing substances- perhaps tobacco smoke, may flip the cancer causing switch. i think ( hope) that more research will be done in this area so that we may all be able to sleep at night.
i had a second primary cancer ( breast cancer) five years after having my thyroid cancer. i found this statistic when i was doing research for this blog, and it is sobering. " nearly one in five cancers diagnosed today occurs in an individual with a previous diagnosis of cancer, and these second cancers are a leading cause of death among cancer survivors". this statistic is from the NIH, (nation cancer institute) , division of cancer epidemiology and genetics.
after my total thyroidectomy, and the removal of two of my parathyroids which were also cancerous, and eleven lymph nodes, my physician sent me to a radiologist to determine if i needed the RAI treatment. my lymph nodes were clear, but one of my tumors was fairly large- 2cm, multifocal, and unencapsulated . the official report was: focal lymphatic/vascular invasion present, unencapsulated tumors, diffusely infiltrated. translated, my tumors had burst open and were spilling out into my vascular system. i had read about the possibility of breast cancer due to a large dose of the I-131. but, i did not feel, and the radiologist certainly agreed, that i should skip the I-131 dose. the best advice that i read was in a book by m. sara rosenthal. she is a thyroid cancer survivor herself, and she advised that if the radiologist recommended the RAI treatment it was better to get it, then carefully monitor for breast cancer. have all recommended mammograms- take care of yourself, in other words. i do not ask myself why i had breast cancer. i was one of the 30% who have a second primary cancer. was it the I-131 dose? did exposure to some cancer causing substance cause a gene mutation that turned on and caused another cancer? i will never know the answer to this question. i will have to say that for me personally, i would do the I-131 dose again. i had an aggressive type of thyroid cancer- papillary with follicular variant, and i certainly want to do all that i can not to have a recurrence.
this has been a heavy blog, on a difficult subject. i hope that i have answered a few questions. i choose not to live my life in fear, but i want the facts so that i can make informed decisions. next time in my blog, we will talk about rainbows, puppy dogs, and butterflies. and then, maybe not.
Monday, May 8, 2017
" got your boxing gloves on, ready to take me on. ..we go on all alone... i was always in this to win it. " from the song "boxing gloves" by shelby earl
i was trying to come up with a theme for a new blog today , and i happened to really listen to the lyrics of this new song by shelby earl ( my new favorite folk/indie singer/songwriter). today i also saw the commercial from novant health about cancer. you know, the one where the woman is in the boxing ring fighting the invisible foe, cancer. the person that came up with this commercial just had to be a cancer survivor. it is exactly like that, by the way. especially with my breast cancer- the surgery, reconstruction, and mainly the chemotherapy almost kicked my butt. i was actually ready to throw in the towel right before my last chemotherapy treatment. yes, that was me lying down on the mat, but you know what? i managed to get back up and survive.
survivorship is not a piece of cake, however. i am so thankful to have the continued support of family and friends. i am not sure why God spared me, but i am grateful that He did. i have read several blogs about what happens to people after cancer. the feelings, the after care, and most importantly, the anxiety that comes with looking over your shoulder. i try really, really hard not to do this. perhaps it will be easier, and my dark thoughts of recurrence less frequent, when i have been cancer free for longer. i have my 7 year cancerversary from thyroid cancer coming up may 19th. my 2 year breast cancer cancerversary is coming up on may 22nd. i mark my cancerversary dates as the dates of my surgeries. have i mentioned that may is my least favorite month??? and for the record, i have had 3 skin cancers ( 2 squamous, 1 basal cell) in six years. i will admit that i do not mark those dates.
i have blood work coming up on may 17th. this one is for my thyroid cancer monitoring. i noticed that my endocrinologist has checked off a lot of different tests on the order for this. i will have to tank up on water the day before and the day of the blood draw. i am a "difficult stick" and i do about anything that i can to make this easier- for me and the medical technician. i do not see my endocrinologist again until august. i will have more blood work done at the end of july for this appointment. in august, i will have my bi-yearly throat ultrasound. i also have my bi-yearly skin cancer check up coming up at the end of august. i think that i am supposed to see my oncologist in september, which means more blood work. i do not have that appointment yet- my oncologist's office will send it in the mail a little bit before i am to be seen. all of these appointments not only make me nervous, but they are hard to keep up with! i think i need a personal assistant to help me with this.
monitoring, monitoring, monitoring. it is part of taking good care of myself, but exhausting. along with all of the testing, and test anxiety, comes a fear of recurrence. i have had a sinus infection this month, but i let it go for two weeks before i called my family physician . i had a slight fever and a mild sore throat, along with the other usual symptoms. i thought it might be a sign that the cancer was back! i hate to sound neurotic, but having had cancer three times, well, it could happen again. i think that the majority of cancer patients have this fear of recurrence. rationally, you tell yourself that this could not happen again, but it should not have happened the first time, or the second, or the third. i told one of my doctors that i want to be in the middle of a scale of " neurotic" on one end, and " i don't care" on the other. sometimes i fear that i lean towards one side more than the other, but i do the best that i can.
so, i am " in this, to win it." i still have my boxing gloves on, and that is the best that i can do. that, and roll up my sleeve.
survivorship is not a piece of cake, however. i am so thankful to have the continued support of family and friends. i am not sure why God spared me, but i am grateful that He did. i have read several blogs about what happens to people after cancer. the feelings, the after care, and most importantly, the anxiety that comes with looking over your shoulder. i try really, really hard not to do this. perhaps it will be easier, and my dark thoughts of recurrence less frequent, when i have been cancer free for longer. i have my 7 year cancerversary from thyroid cancer coming up may 19th. my 2 year breast cancer cancerversary is coming up on may 22nd. i mark my cancerversary dates as the dates of my surgeries. have i mentioned that may is my least favorite month??? and for the record, i have had 3 skin cancers ( 2 squamous, 1 basal cell) in six years. i will admit that i do not mark those dates.
i have blood work coming up on may 17th. this one is for my thyroid cancer monitoring. i noticed that my endocrinologist has checked off a lot of different tests on the order for this. i will have to tank up on water the day before and the day of the blood draw. i am a "difficult stick" and i do about anything that i can to make this easier- for me and the medical technician. i do not see my endocrinologist again until august. i will have more blood work done at the end of july for this appointment. in august, i will have my bi-yearly throat ultrasound. i also have my bi-yearly skin cancer check up coming up at the end of august. i think that i am supposed to see my oncologist in september, which means more blood work. i do not have that appointment yet- my oncologist's office will send it in the mail a little bit before i am to be seen. all of these appointments not only make me nervous, but they are hard to keep up with! i think i need a personal assistant to help me with this.
monitoring, monitoring, monitoring. it is part of taking good care of myself, but exhausting. along with all of the testing, and test anxiety, comes a fear of recurrence. i have had a sinus infection this month, but i let it go for two weeks before i called my family physician . i had a slight fever and a mild sore throat, along with the other usual symptoms. i thought it might be a sign that the cancer was back! i hate to sound neurotic, but having had cancer three times, well, it could happen again. i think that the majority of cancer patients have this fear of recurrence. rationally, you tell yourself that this could not happen again, but it should not have happened the first time, or the second, or the third. i told one of my doctors that i want to be in the middle of a scale of " neurotic" on one end, and " i don't care" on the other. sometimes i fear that i lean towards one side more than the other, but i do the best that i can.
so, i am " in this, to win it." i still have my boxing gloves on, and that is the best that i can do. that, and roll up my sleeve.
Monday, May 1, 2017
" i don't want you anymore, cause you took my joy, i don't want you anymore cause you took my joy, you took my joy, i want it back, you took my joy, i want it back." joy, by lucinda williams
this has been my theme song, or my fight song, for all of my cancer experiences. my husband and i actually went to see lucinda williams in concert last week when she was performing in asheville, north carolina. she put on an amazing show, and this song, JOY, was her final song of the evening. i was afraid that she would not perform it. obviously, it is my favorite song that she has written. i have listened to it a ton of times, and have even occasionally sung along with her- if she only knew! better that she did not know, though. my voice has taken a little bit of a hit with my thyroid cancer/surgery. the surgeon told me that the cancer had wrapped around my vocal cords, as well as my thyroid and two of my parathyroids. i am thankful that i had such a skilled surgeon. i can not " hit the high notes" anymore, but at least i can talk and also sing a little. sometimes, more often when i was working, people will ask me if i have a cold. i just tell them it is allergies. but i do- for whatever reason- have good and bad voice days. i am just thankful that i have a voice, period.
and i am regaining some of my joy! thanks to this final step, the 3D nipple/ areola tattoos, in my breast reconstruction, i am feeling more " normal". i am not saying that things have gone back to how they were before i had cancer. but basically, i have managed to figure out how i can be happy now. i have wonderful family members and friends, who have given me a lot of support over the years. at first, and i think that this applies to just about everyone who faces a cancer ( or two) diagnosis, you just deal with the medical decisions. what procedures you need to have, who will do them, where you will get treatments and/or surgery, etc. i have said this before, but your brain sort of goes on "automatic pilot" while you are dealing with these pressing medical issues. after the shock of hearing those terrible words " YOU HAVE CANCER", you just try to focus on what you need to do medically to get better.
i think that in some ways, the after your diagnosis and treatment part, can be a little tougher. there are no real guidelines as to what to do, think, say, or feel. i have read a few books and articles, written by other cancer survivors. unfortunately, there is no" one size fits all "when it comes to getting your life back on track. i have always tried to show gratitude for all of the good people and things in my life. staying positive has worked best for me. not to say that i did not have my down days, or a melt down every once in a while. but i can honestly say that i have been pretty optimistic overall. this has helped my family, i think, but it has also helped me. if you choose happiness, you can get at least some measure of it.
that said, i am thankful for all of the support and positive comments that i have received on my "tattoo blog". it was a bit of a leap of faith on my part, to write it, but i am glad that i did. sharing experiences with others is a really good feeling, i think. and it is helping me get back some of my JOY.
.
and i am regaining some of my joy! thanks to this final step, the 3D nipple/ areola tattoos, in my breast reconstruction, i am feeling more " normal". i am not saying that things have gone back to how they were before i had cancer. but basically, i have managed to figure out how i can be happy now. i have wonderful family members and friends, who have given me a lot of support over the years. at first, and i think that this applies to just about everyone who faces a cancer ( or two) diagnosis, you just deal with the medical decisions. what procedures you need to have, who will do them, where you will get treatments and/or surgery, etc. i have said this before, but your brain sort of goes on "automatic pilot" while you are dealing with these pressing medical issues. after the shock of hearing those terrible words " YOU HAVE CANCER", you just try to focus on what you need to do medically to get better.
i think that in some ways, the after your diagnosis and treatment part, can be a little tougher. there are no real guidelines as to what to do, think, say, or feel. i have read a few books and articles, written by other cancer survivors. unfortunately, there is no" one size fits all "when it comes to getting your life back on track. i have always tried to show gratitude for all of the good people and things in my life. staying positive has worked best for me. not to say that i did not have my down days, or a melt down every once in a while. but i can honestly say that i have been pretty optimistic overall. this has helped my family, i think, but it has also helped me. if you choose happiness, you can get at least some measure of it.
that said, i am thankful for all of the support and positive comments that i have received on my "tattoo blog". it was a bit of a leap of faith on my part, to write it, but i am glad that i did. sharing experiences with others is a really good feeling, i think. and it is helping me get back some of my JOY.
.
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