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

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 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.

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.

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.


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Thursday, April 20, 2017

"... i don't know the reason, i stayed here all season, nothing to show but this brand new tattoo; ( actually two), they are real cuties, not mexican beauties, and i do know the reason, i do have a clue." lyrics from (sort of ) Margaritaville by Jimmy Buffett

i  went back and forth, several times, about whether or not i should write a blog about what i had done yesterday. remember, this is a 3Fer blog- thyroid cancer, breast cancer, and skin cancer. today, i am writing a blog that relates to breast cancer.  this is an intensely personal blog- about an intensely personal subject. i probably should  say " WARNING, MAY NOT BE SUITABLE FOR ALL AUDIENCES ".  with this in mind, however, i decided to blog about this  because i write for two reasons: one, and most importantly, i write to share my experiences with others so hopefully i can be of some help in someone's breast ( or thyroid or skin ) cancer experience.  i was going to say journey, but that word has been a bit over-used, i think. the second reason i write, i will admit, is that it helps me to  deal with my situation(s) by writing about them. i do not advertise, or receive any compensation from my blog posts.

i will give you some background information before i talk about the big reveal. my plastic surgeon is a perfectionist. he did an amazing job with my reconstruction, and as a bonus, he is a really nice person. we have had our "back and forth" conversations about how much saline to add to my expanders, what size breasts i wanted,etc. but we always did it in a friendly way, and in the end,  it was a compromise.( evidently he thinks bigger is better ). the very  last step in breast reconstruction is either nipple reconstruction ( no thank you, i have had enough surgery for a while), do nothing and live with the scars and a blank slate,  OR 3-D nipple and areola tattoos. i thought that i was just fine with my two large scars across my chest- unadorned and, well, just there. every time that i went back to my plastic surgeon for a re-check, he would look at my chest and say," well the reconstruction went well, but how about the 3D tattoos i told you about?" i told him that i was fine. and i thought that i  was- that is until i saw a facebook post of a program that was on the today show a year or so ago. there is a tattoo artist by the name of vinnie myers and he is truly an artist. 3D nipple tattoos and areola tattoos are the only thing that he does now, but in the past he has tattooed some very famous rock stars. vinnie knows his way around instruments for tattooing  might say.

getting back to the program that i watched, vinnie is the only artist that the john hopkins breast cancer  center will send their  patients to for a 3D/areola tattoo. i saw the stories of women- some my age- who had this done, and how it made them feel better about themselves. it changed their lives in a positive way. i did not know that i was crying until my husband handed me some kleenex. i told him, well, i  DO need to do this and i am ready. i talked to my family a bit, and they were all very supportive with my decision. i called and made an appointment for the first available- which would be in six weeks. i was afraid that i would have to wait months. now that i had made my decision, i was ready for this to happen.

the day we left, i was nervously excited. ready, determined, but a little anxious. i had  never been in a tattoo parlor before, and therefore did  not have any tattoos. i am not against tattoos, but they were not popular when i was growing up. well, not unless you were in the armed services, of course.

"Little Vinnie's Tattoos" has two locations for the nipple/areola tattoos. one is in finksburg, maryland and the other is in new orleans, louisiana. did any of my facebook friends wonder why i was in maryland yesterday? actually my husband and i drove up there on tuesday, and my appointment was on wednesday morning. we spent one night in a lovely bed and breakfast in maryland. but that is another story.

so i got to the tattoo parlor. it was very nice inside- sort of a mix of a" living room meets a low key doctor's office " sort of decor.  there was a map on the wall- with push pins showing where women had come from to get a nipple/areola tattoo from vinnie. there were probably a thousand push pins on that map. i put my pin on my state. i was amazed, but sad, that so many women have had to have this done.

vinnie was very professional. he was thorough, and i could tell that  he knew exactly what he was doing. we discussed the placement of the tattoo, but i let him pick out the color. after all, this is what he does all  of the time. maybe it was because his sister is a breast cancer patient, but i think that he was so kind to me because he is just that kind of person. the tattooing took about an hour. people have told me that it did not hurt. well, i will not lie to you- it did hurt a little . more on one side than the other. was it unbearable? no, not at all. would i do it again?, heck, yes. i have sterile pads and an antibiotic ointment to use for 5 days. there are other instructions which i will not bore you with. his assistant came in and talked with me about the aftercare. the assistant was very professional and courteous as well. vinnie probably is uncomfortable with this part, as i am sure it happens quite often,  but when i looked in the mirror, i cried a bit. instead of seeing two large scars across my chest, i saw two beautiful  nipples and two beautiful  areolas. i saw a more normal version of me.

so if this was TMI, sorry. if this helps someone who has been wondering about 3D nipple and areolas tattoos make the right decision for her, then i am happy. please do research on  the tattoo artist is the best piece of advice that  i can give any woman considering this procedure. if at all possible, go see vinnie. maryland is not that far away ( it took us 7 hours to get there) and it was so worth it to me. when  i see my plastic surgeon again in november. i am looking forward to seeing the expression on  his face when i take my drape off! but first and most importantly, i did this for me.

Thursday, April 13, 2017

" the heart is a bloom; shoots up through the stony ground... it's a beautiful day, sky falls, you feel like; it's a beautiful day, don't let it get away... it's a beautiful day, don't let it get away, it's a beautiful day. " lyrics from " beautiful day" by U2

i have been in  a pretty dark place for several days now. there have been  two deaths in my family in the space of about  a week. my dear cousin lost his battle with ALS on tuesday of last week. but the shocking death was that of my nephew- a strapping, healthy, wonderful young man of 31. my nephew's death was cruel, and it was sudden. we all knew that my cousin was slipping away. that did not make his death easier, but everyone was somewhat prepared for his passing. my nephew, on the other hand, was just going about his business- working, loving his family, doing all of the things most of us do every day.

i still do not understand the answer to the question " why?" concerning these two wonderful people. i suppose that i never will. but there is a lesson, a reminder to all of us when things like this happen. i had forgotten what that important lesson is  until now. there were viewings, family gatherings, funerals,etc. to get through first. i think that almost everyone, family and friends,  had their brains on "automatic pilot "in order to get through all the rituals that exist so that we who are left behind can deal with loss. i know it is respectful and correct that people do certain things- receiving family and friends,attending  church services, and such, but really a funeral is for those of us still here on earth -a source of comfort, you might say.

having had thyroid cancer, skin cancer, and breast cancer, i have spent quite a bit of time thinking about my life- what is important to me now  and what is not. i know that some people work until they are much older than i am, but that was not the correct decision for me. while i enjoyed my work, and even felt that i made a difference in some people's lives on occasion, i decided that i needed some time for myself. so as i have said before , i retired in january of this year, and my husband retired at the end of february. we are not going to just sit around though. we are involved with our grandchildren, our children- when they need it, and hopefully we will be active in some yet to be determined way for our community. not to be political, but there is much to be done- the environment and civil rights are two important issues for my husband and me.

back to the reminder for all of us. when i get really down, i play music. all types- classical, classic rock, reggae, jazz, folk, world music, etc. in fact my musical tastes are so varied that i think i blew up the computer that amazon uses to make music recommendations for their customers. i have one criteria though- it must be good music. being really depressed today, i put some upbeat classic rock on my CD player. the song from U2 started playing " beautiful day" and those lyrics really resonated with me. yes, today is a beautiful day and we must never, ever forget this fact. it is a beautiful day, and we must not let it get away. our time here on earth is precious. live life to the fullest surrounded by those people you love, doing the things that you love.

Monday, April 3, 2017

" well, it's all right, if you live life as you please...well it's all right, doing the best that you can, long as you lend a hand...i'm just happy to be here, happy to be alive....well, it's all right, even if you are old and gray...you still have something to say." end of the line, by the traveling wilburys

i just read an article about helping cancer patients " get back to normal" in their lives.  as cancer patients, we have a new normal- life has changed for us and will never be quite the same. still, there is a part of us that longs for this sense of normalcy that we had  before the big C.

i have just recently retired. admittedly a little sooner than i had initially  planned. i enjoyed my work- i like helping people- but having had cancer twice, i decided that i needed to 1. reduce some of the stress in my life and  2. enjoy my life- do some things that i had been wanting to do but had not had the time to do. my husband gladly followed suit, so now we are two happy retirees doing some things that we enjoy. it is an adjustment, though. most days one or both of us says" wow, we are really retired, aren't we? this is great!"

i always pictured retirees as  being in their 80s and sitting around the house, on the couch preferably, eating dinner on a TV tray while watching the news. o.k., sometimes we do eat dinner while watching the news ( PBS news hour, to be precise). but my husband and i do not do a whole lot of sitting around, otherwise. getting back to the article on helping cancer patients achieve a more " normal" life,the article stated that  the top thing that we cancer patients do to try to achieve some normalcy from our past lives, is to return to some craft that we loved doing before our illness. strangely enough, i had taken a stained glass course about ten years ago and loved it. then, life became more hectic -(work and family obligations) and there just  was no time for doing stained glass.

i honestly felt a longing to return to stained glass making. i was afraid to try again, i will admit. self doubt kept me from pursing it. but thankfully my daughter would not take any of my objections seriously, and she found a stained glass class for me to take. it was a wonderful experience. no, i am very far from being good at stained glass making, but i am decent enough to have fun with it, and perhaps make a few pieces for my family and friends eventually. this led to my husband deciding to make a " tiny house" stained glass studio outside for me. ( we do not want our grandchildren exposed to the lead based solder or ingesting or stepping on glass shards- believe me, the shards go everywhere!). my husband and i are both enjoying the planning and building of this studio. when it is finished, i will post pictures. joanna gaines will be so jealous, she will have to have chip make one for her!

i also have taken a beeswax candle making class, and have learned to make soap. my husband has two bee hives ( which will eventually provide beeswax for my candles) and is having fun going to local bee keeper meetings. the best thing that my husband and i are  able to do now is  to spend time with our grandchildren. we can also attend school programs. when we were both working, it was nearly impossible to get time off, and then only if you planned about 3 months in advance.

i still enjoy helping people, just in a different format. i think my crafting is helping me feel more "normal". i appreciate all of the time, quality time, that i now  get to spend with my husband, the  rest of my family and my friends.  my daughter looked at my calendar that is posted in our kitchen, and said " mom, you are busier than i am!". when people ask me if i am finding things to do in my retirement, i am ready with answers. a lot of them.

Wednesday, March 22, 2017

Lymphedema : what is it? what to watch for, and how to treat it.

 when i had my thyroid surgery, specifically, a total thyroidectomy to remove a 2 centimeter tumor on the right lobe, a 0.2 centimeter tumor  on the left lobe, two parathyroid glands which were also cancer, and eleven lymph nodes, i was not that familiar with lymphedema. five years after this surgery, almost to the day, i had bilateral mastectomies along with 3 more lymph nodes removed. i had no idea that my lymph node system was compromised. why does that matter? well, i will explain...

the lymph node system in our bodies filter the fluid running through them, trapping bacteria, viruses, etc. so that our  hungry little lymphocytes( a type of white blood cell) can gobble them up. my physical therapist explained it this way: pretend your body is a ten lane highway full of busy cars. all of a sudden, these ten lanes become two lanes and things get backed up. ( probably road rage occurs, also). because of this lane closure, or blockage, you have swelling in your arms and/or legs. along with surgery to remove lymph nodes, radiation, injury or even the medication tamoxifen can cause lymphedema. i am focusing on cancer treatment/surgery for this discussion. lymphedema can also occur on it's own, but i am not going to discuss this.

swelling is of course a symptom of lymphedema. i will be using myself , as usual, for an example. i noticed that my left arm was slightly bigger than my right arm. i did not recognize this fact until a few months after chemotherapy. lymphedema can occur months or even years after chemotherapy or surgery. it is important to recognize the symptoms, and get adequate treatment just as soon as possible. there is no cure for lymphedema, but the condition can be managed and the patient can be more comfortable. along with swelling, you may notice a feeling of fullness in the arms or legs, and less flexibility in wrists, hands and ankles.

back to me. when i noticed the swelling in my left arm, i contacted my physician and asked for a physical therapist referral. the physical therapist, and this is important, in my opinion, i chose is a CLT which stands for "Certified Lymphedema Therapist". a CLT has advanced training in manual lymph node drainage on top of the required  physical therapist degree. the first thing that my CLT did was to take several measurements of both arms- from my wrists to my shoulders. she verified the diagnosis of lymphedema, and my treatment began. for several weeks, twice weekly, i learned certain exercises to do, along with receiving the manual lymph drainage massage. does this sound painful? well, it was not! in fact, it felt wonderful, and i am convinced that i felt better afterward. it was interesting that the massage did not just include my affected arm. she also did massage on my abdomen- we have lymph nodes literally everywhere in our bodies. what she was doing was re-directing the fluid from my arm into my abdomen. just think of it as a detour- the ten lanes of angry traffic now have another route to travel.

another important part of lymphedema treatment is to get measured for a compression garment. and of course you have to wear it ( i am trying to be better about this, i will admit). if you are planning on taking an airplane trip, you will definitely want to wear your compression garment. i got a few garments  so that i could wash one while having one to wear. i am  not sure about every one's insurance, but my insurance plan  paid for these. i was very surprised, but i recommend asking your physician to write an order for the compression garment ( and it has to be fairly specific- right or left arm,diagnosis,etc). i went to a store that had board certified fitters who were able to bill to the  insurance companies. this is important because these garments are sort of pricey- but well worth it in my opinion.

a few other things to note: if you have lymphedema, you should not have blood pressure taken or blood drawn from  that particular arm. gentle exercise ( i recommend seeing a CLT for help with this) and  elevation of the involved limb may also help with the lymphedema. you also need to be careful of cuts or insect bites on the affected arm or leg. it is important to also wear sunscreen( which is a great idea for everyone) to prevent sunburn on the area. some people also wear lymphedema alert bracelets.

so, lymphedema is a condition that can not be cured, but can be managed. the sooner the detection and treatment, as in most things, the better the outcome. let's keep those cars moving down the highway!

Friday, March 17, 2017

After thyroid cancer- long term monitoring, testing and aftercare. i could not think of a song for this, but perhaps " the long and winding road" by the beatles would have been a good choice...

i have seen so many different "after thyroid cancer surgery" plans, that i am sure the only thing that most people can agree on is that nearly every one's plan is different. however, there are some basic tests and monitoring schedules that should be used, i think. before i discuss these, let me say that the tests and monitoring schedules,as well as the dosing of thyroid hormone replacement medication,   depend somewhat on the stage and risk level that have been used to diagnose the patient. i was diagnosed as stage III, moderate risk. if you go to the thyca website, you can see just what the staging and risk factors mean. your doctor should have told you the stage and risk factor of your thyroid cancer at some point in your treatment. while i detest the words "thyroid cancer is the good cancer ", it usually has a good prognosis  when there is early detection and treatment.

after your treatment for thyroid cancer, which usually includes  surgery, RAI ingestion, external radiation( in some cases), and sometimes traditional chemotherapy( worse case scenario- and i do not personally know of anyone who has had to have this, thankfully), you will be placed on thyroid hormone medication. this is the most important part of the aftercare, in my opinion. not only does the dose of thyroid hormone affect the quality of life in people who have had thyroid cancer, but as i have said before, thyroid cancer patients must be monitored for their lifetimes. a recurrence can happen anytime - even years after diagnosis.

so, let's talk about thyroid medication dosing. there are several reasons that this is important. it is extremely important to keep the TSH at a level to suppress the possible stimulation of thyroglobulin. just as a reminder, only thyroid cells produce thyroglobulin. if you do not have a thyroid gland in your body, and you test positive for the presence of thyroglobulin( this should be part of your blood work test), that means that you have, most likely, thyroid cancer cells somewhere else in your body. unfortunately, there is also another factor that adds to the excitement, and that is that some people ( me included) produce thyroglobulin antibodies. this makes the test for thyroglobulin rather difficult to interpret. in my case, i tested positive for the thyroglobulin( TG) the first year, as well as the antibodies. for the next two and a half years, i tested positive for just the antibodies. my physician could not explain the " why" to me, and it was very stressful. after a little over three years, my TG levels went down to what is considered normal, and my antibodies went away. my physician told me that sometimes it just takes a while for the RAI to work. maybe my immune system got it under control on it's own? during this time, my physician kept my TSH essentially zero. the purpose is that by keeping the TSH zero, you are not stimulating those thyroid cancer cells to create mayhem somewhere else in your body.

i have had my TSH at near zero for almost 7 years now. this could be considered aggressive treatment, i guess you could say, but both my doctor and i agreed- given my stage and risk - that it was the best thing for me . this is where the individual plan comes in. i feel less anxious with an extremely low TSH, but it might not be ideal for someone with , say stage I or II with a low risk factor. having a low TSH is not without risks. a patient could develop heart arrhythmia's, or osteoporosis. i have had several bone density tests to check for osteoporosis, and to this date, i do not have that. i also do not have any arrhythmia's. but these are two conditions that i am monitored for fairly frequently.

TSH is only one blood test to be concerned about. thyroid cancer patients should have T3 and T4 , TG and if appropriate, TG antibodies tests done as well. a physical neck check to check for lymph node enlargement is important. neck ultrasound checks for any disease in the neck, i call it checking for "goblins". there is a wildly variance in the timing of these ultrasounds. my physician has ordered it for me twice yearly for the past almost 7 years. some patients get it once yearly, and some not at all (!). again, this will depend on what the patient and her/his physician  decide on. i am comfortable with twice yearly ultrasounds. they are painless, do not involve harmful radiation, and frankly give me peace of mind. since it has been almost 7 years, my physician and i are considering reducing my ultrasounds to once yearly. i am not quite ready for that, though.

it is important that a patient has a good relationship with her/his doctor. compromise is essential. i am very fortunate to have a wonderful physician who listens to how i am feeling, and does not just go by my blood work numbers. at my last visit, for example, i talked with my doctor about wanting to try some naturally derived thyroid hormone. i had been on some synthetic T4 and synthetic T3 for some time, and i was not feeling well. i was having a lot of  tiredness- especially in the late afternoon, and other hypo symptoms. she agreed and switched me to Nature-throid, which is a naturally derived, hypoallergenic thyroid hormone. it contains both T4 and T3. i feel substantially better on this. i called her office last week, and asked her if we could go up on the dose. while, i was feeling better overall, i was still not feeling quite the way i wanted to. now this was after being on the dose for 3 months. it takes approximately 2 weeks for a new drug/dose to make a difference. at least this has been the case for me. some people notice a difference after just a few days. that is where the "individual plan" comes in again.

so to wrap things up, monitoring is as follows ( this is according to the thyca website- your plan may differ, of course)

1. physical neck check: every three to six months for the first two years, and at least once a year thereafter.

2. blood tests- thyca did not give a rule of thumb for this. i have blood work done anywhere from two to four times a year. this includes the above mentioned tests ( TSH, TG, TGA,T3,T4,etc). i have blood work done and an office visit, along with ultrasound twice yearly. i have additional blood work done when i change medications or dose. you might also get additional blood work done if your overall health changes. my advice is to find a good phlebotomist -you  are certainly going to need one!

3. ultrasound tests- thyca also did not give a recommended schedule for this. like i said, i have one twice yearly, when i have my office visit and blood work tests done. i may go to just yearly on this, but so far twice yearly is working out for me. as i mentioned, it does not expose the patient to radiation, is not painful, and is just another way to monitor a possible recurrence.

4. RAI whole body scans. i had one immediately after my surgery, and one about a year later. i have not had to repeat this test. thyca does not make any recommendations about the frequency of this test. but i imagine that if there is a recurrence, this would be mandatory. again, this is something that the patient and their physician will discuss.

5. chest x-ray- i had one of these after my surgery, and before my RAI treatment. the radiologist who ordered the test said that thyroid cancer, when it spreads, goes to the lungs and bones. my lungs were clear, and i have not had to repeat this test. again, this would be up to the patient and their care plan.

6. CT scans- while i had one of these with contrast dye about four months after my breast cancer, it is not regularly used in thyroid cancer, but can be. if you have this, you will not get the contrast dye because it is high in iodine, and should you have cancer, it could delay the RAI treatment.

7. MRI and PET scans are sometimes done. i probably was a candidate for one. but upon talking to my physician, we both agreed that it was not the best option for me, even though my TG and TGA were elevated. it turns out, that was a good decision. sometimes you just have to make your best guess and go with it. i should say your informed best guess. 


testing is stressful! but in my opinion it is important. my surgeon told me that my thyroid cancer had been there for" quite some time". it would have been nice to have caught it earlier, but of course i am thankful that i was not in stage IV or that i had a more aggressive type of thyroid cancer. coming up with a treatment and monitoring plan for each individual patient is important. this should be a plan that is acceptable to the patient and their physician. compromise and informed decisions can make all the difference in prognosis and quality of life.

i hope that my blog provided some useful information. but i know that it was certainly a dry blog, so because of that, and in honor of st. Patrick's day, and not to forget the fact that i love corny jokes, here are a few for you...

" What do you get when you cross poison ivy with a four leaf clover?  A rash of good luck."

" Why can't you borrow money from a leprechaun? Because they are always a little short."

" I went out drinking on St. Patricks day, so i took a bus home. this may not be a big deal to you, but i had never driven a bus before."

" Why don't you iron a 4 leaf clover? because you do not want to press you luck."

i will end this blog on that thought...

Sunday, March 12, 2017

"get up stand up. stand up for your rights; get up, stand up. life is your right, don't give up the fight." from get up stand up, by bob marley

lately, i have been reading comments thyroid cancer patients have been posting about inadequate care, during or after thyroid cancer treatment. my first thoughts were that there should be a "national protocol of treatment" for thyroid cancer patients. after careful consideration, i realize now that this is not exactly possible. one reason is that  there are different types of thyroid cancer ( papillary, follicular, papillary or follicular variants, medullary, and anaplastic) so there is not really a one size fits all treatment. also, every age group- from small children to adults can have thyroid cancer. so this would influence treatment and after care.

what really disturbs me, is that too many people do not realize that with thyroid cancer you will require life long monitoring. the percentage of recurrence with thyroid cancer is about 30%. it is very important that if there is a recurrence, that the cancer is found quickly and treated. i have read that although more people are being diagnosed with thyroid cancer, it is projected that more patients will die of thyroid cancer in 2017 compared to 2016.

this is where the statement that i am always preaching comes in: " you need to be your own best patient advocate."it is good to search the internet, but please go to reputable sites. "Thyca: thyroid cancer survivors association" offers excellent advice about diagnosis, treatment, testing, long term monitoring,etc. i think that this is the gold standard for every thyroid cancer patient. if you have not been to this website, do so now! there are excellent books on thyroid cancer- two of my favorites are by Mary Shomon, and one by M. Sara Rosenthal. ( you can purchase them from amazon if they are not stocked in your local book store). an informed patient is one that will live a better, and longer in my opinion, life.

so, you have obtained your information from Thyca, and possibly some books, so where to now? the next step is to find a good physician. and by "good" i am talking about a physician that has experience treating thyroid cancer patients, is good at her/his job, and most importantly, in my opinion, is willing to listen to patient concerns and adjust the treatment accordingly.

i will use myself as an example. i have an excellent endocrinologist, i think. some people choose not to go to an endocrinologist, and that is entirely up to the patient. but just remember that an endocrinologist treats ONLY patients with thyroid disorders or diabetes. i have just had a medication change from levoxyl ( a synthetic t4 only drug) plus cytomel ( a synthetic t3 only drug) to Nature-throid, which is a naturally derived t4 and t3 combo drug. i have been feeling better on the Nature-throid, but was still having some "hypo" symptoms. added to this, my blood work had changed from the time before. my tsh was up, my t4  and t3 were down. my endocrinologist felt that my blood work numbers looked acceptable, but i was not comfortable with them. i asked her to increase the dose of my Nature-throid and told her that i would stop taking the cytomel( it was causing nausea). she agreed to this, and has ordered more blood work to be done in may.

i am highly respectful of my doctor, but i appreciate the fact that she takes into account how i feel, and does not just rely on the lab values. if i tell her that i am not feeling well, she will make adjustments until we come up with something that satisfies us both. a good doctor/patient relationship is crucial to success in treating any disease. since thyroid cancer requires life long monitoring, i think that it is especially important that thyroid cancer patients find a good physician that is willing to listen and compromise. it took me a few years to find a physician that was a good fit for me. don't give up!

in my next blog i will discuss after care, long term monitoring, and follow up testing. another tip for you- it really helps to have a notebook in  which you can file all of your test results, blood work results, office visit summaries, and perhaps articles that you find helpful about thyroid cancer. i bought a 3 ring notebook and have found this to be invaluable so many times over the years. having my test results at my fingertips not only helps me, but actually my doctor has found it useful a time or two, also. even if you did not start the notebook at the beginning of your thyroid journey, you can still start one now. it is part of being your own best patient advocate.

Saturday, March 4, 2017

" you were such a strong swimmer, and you taught me how to never fear those tall waves, and you stayed in those deep waters, always inviting, to a bed on the bottom. and that current took you away, and it made you pay and pay..." Strong swimmer, by Shelby Earl

my husband and i were listening to NPR this morning, while he had his coffee and i had my cup of tea, when we heard this song- " strong swimmer" by shelby earl. i was not familiar with the artist, nor had either of us heard the song, but it struck a chord with me.( no pun intended ). we listened to the song, and an interview with the artist. ms. earl said that she thought of her step-mother when she performed this song. her step- mother had a health crisis a few years ago , and ms. earl had come  home to help take care of her. she said that her step mother worked so hard to get better, but it was a daily challenge.  while it is a song that might bring tears, it is meant to be inspiring and uplifting as well.

listening to the song, it made me remember my own "health crisis" that i had  when i was in the middle of my chemotherapy for breast cancer. it was at a time when the nausea/vomiting was at it's worst, and i was at my weakest. not only had one of the chemotherapy drugs caused some neuropathy in a few of my toes( they are still numb to this day , by the way), but the needle slipped out of my vein a little, and the medicine infiltrated into the skin on my left forearm. i had a bright purple streak- from just below my elbow to nearly my wrist and it was painful. it has since faded to light pink ( appropriately enough), but i think it will remain with me as a reminder of this time- as if i need a visual reminder.it was during this very difficult time for me, that i told my husband  i simply could not continue with the  chemotherapy. the new chemotherapy medicine that the physician was now having to add on had even more nausea and vomiting as a side effect. my white blood cell count was dangerously low, as was my will to fight the cancer.

what made it possible for me to continue the chemotherapy, and complete my treatment was some really deep soul searching. yes i had my faith. yes i had wonderful support from family and friends. but when you are a patient going through this awful treatment, you and you alone are the one who is sitting in that infusion room with that poison cursing through your veins. my parents passed away a few years before i got sick, and in some ways that was a blessing. but they both instilled in me the desire to fight- to be a strong swimmer. i needed to find a way to get through this difficult time so that i could hopefully be there for my family when they needed me. i will admit that i DID fear those tall waves, but i kept swimming until i found my way to the shore. safe at last.

i think that we all have to be strong swimmers. whether we are battling cancer, struggling with thyroid disease, or any other health crisis, we need to do our best to get better. i am proud of the fact that i really wanted to quit my chemotherapy, but i did not. i finished it. and every six month test that i have is challenging to me, but i fight through that as well. some people have said that i am brave. i do not feel brave at all, but i do feel like a strong swimmer. and when it comes down to it , that is really all that you can do- keep your head above water and swim hard for the shore.

Monday, February 27, 2017

"the long and winding road, that leads to your door. ...the wild and windy night that the rain washed away, has left a pool of tears, crying for the day." the long and winding road, by the beatles

i had my oncology blood work and visit with the oncologist today. for those of you who think my title might be just a bit dramatic, i will try to explain how i feel every time that i have an oncology appointment . when my husband and i get near the oncology center, a huge, sprawling building- a city in itself, i get nauseous. and not just any nausea. i am re-visited by the ghost of past chemotherapy nausea. clearly not as bad, but present just the same. my hands get damp, my blood pressure rises, and my heart pounds. sometimes i am not sure how i made it through chemotherapy. my spiritual beliefs, the incredible support from  my family and friends certainly helped, but when you think about it , chemo  is a one trick pony show.( with the patient being the unfortunate pony).  i sincerely hope that no one in my family, or any of my friends, ever, ever have to go through this! sure, the surgery was traumatic, but the chemotherapy was just unimaginable. after having said all of this, yes, i would have made the same decision to have chemotherapy. i trust my oncologist, and that was his recommendation. i am hoping to be around for a while longer for my children and grandchildren, and this was a necessary evil.

it is funny how we, or maybe it is just a "me" thing, associate smells with feelings.for example,  the hand soap at the oncologist's office- very anti-bacterial of necessity- also makes me feel  sick. the smell of it sticks to my skin like melted bubble gum to hot pavement. it takes me several times washing my hands at home to remove the smell. even after a hot shower tonight, i can still smell it on my hands. luckily, all the employees of the oncology center  do not wear perfumes to work. that would probably be over the top for most of the patients.

i have graduated to every six months ( i was having to go every 4 months) for re-checks now. a minor victory by some standards, but major to me. my blood work is almost normal ( i will probably always be a little abby normal, to quote young Frankenstein). it is good enough to satisfy the oncologist, anyway. no swollen lymph glands, or lumps or bumps to report. so i got a good report today. one thing that REALLY made my day was the fact that instead of recommending the anastrazole ( brand name- arimidex. adjunct chemotherapy drug that blocks estrogen production) be given every day for 10 years, the doctors can go back to just having their patients take it once a day  for five years. this is very big news for me. the anastrazole is causing major bone/muscle  pain for me and the thoughts of having to take this for 10 years was a little overwhelming. i can handle 5 years, i think. when my oncologist told me that i was on the 5 year schedule now, instead of the 10, i almost fell off of the exam table! yippity skippity!

i have not heard back from the skin biopsy on my face, but barring any bad news on that front, my skin check, oncology blood work/doctor visit, and thyroid cancer blood work, ultrasound and doctor visits are now all  on the every six months schedule. and somehow, they are now in sync. two in august, and one in september. better to get them all over with at about the same time.

my cancer journeys ( i hate that this word is plural) have definitely been a long and winding road. there have been a lot of tears shed, but not all of them have been tears of sadness. i realize that i am lucky in some very important ways, and hope to continue to be so,

Friday, February 24, 2017

Skin cancer- a cautionary tale

almost all of us know about the importance of self breast checks and mammograms. we are getting more familiar with "check your neck" or thyroid cancer awareness. but i think there is another type of cancer that needs to be addressed, and that is skin cancer.

i am a natural redhead with fair skin and freckles. i will admit to "touching up" my red hair to ward off some stubborn gray hair that i am not quite ready to show off. with my skin/hair combo comes some challenges. it was not until i was in college that i began to appreciate my red hair, i.e., instead of getting teased all the time, i actually got some dates because i had red hair ( amazing). it was also, unfortunately, in college that i began to understand that no matter how long i sunbathed, or how much baby oil i used, i would only get more freckles or worse, a very bad sunburn. i owe my enlightenment to a college roommate. her dad was a plastic surgeon in raleigh, and she said that her family never went to the beach for vacation- they went to the mountains. her skin was snow white when it was not fashionable. my roommate also said that some of her dad's " best" customers were people who had had too much sun exposure.

sadly, the damage to my skin that i am seeing now occurred when i was a child. i remember many bad sunburns growing up. i fell asleep on the beach for a couple of hours one time and was in agony for the whole trip home as well as  several days afterwards. to be fair, no one really connected skin cancer with too much sun exposure when i was growing up.

which leads me to the "cautionary tale" part of my blog. i went to the dermatologist yesterday for a skin check. last time that i went, my dermatologist told me that i could wait a year for my next checkup if i wanted to. i told the receptionist when i made my appointment that i would feel better coming back in six months. as it turns out,  that was a good idea. i had 3 pre-cancerous places on the back of one of my legs( aka, actinic  keratosis) which were frozen off. i also had another squamous cell carcinoma on the same leg as last time, which was cut off. squamous cell is a relatively serious skin cancer in that it can spread to other parts of your body if not treated fairly soon. basal cell is the least likely to spread, followed by squamous, and then the really bad one, melanoma.

i also had a place on my face, close to my mouth. ( talk about putting your money where your mouth is). my dermatologist told me something that he has never told me before. " bea, i honestly do not know what this is! it could be another basal cell, and if it is, you will need more mohs surgery. or it could be just a benign cyst." so he did a biopsy of that place, and i will get the results in two weeks or less he said. as a side note, he recommended this time that i return in six months, not a year, for my re-check. i agreed.

i am not entirely sure why skin cancer has decided to pick on me,too. i now have three types of cancer that i have to get checked out every four to six months. i have my  breast cancer check up with my oncologist on this monday. that one is a biggie. i will be a two year survivor in may of this year, so test anxiety is still pretty high for me for that one. i am doing better about my thyroid cancer checkups. my doctor seems more encouraged, and so am i. unfortunately, there is no " five year mark and you are clear" when it comes to thyroid cancer. recurrence can come at any time. my doctor has had patients have a recurrence at seven or even 20 years out. but i am grateful for each day that i can say that i am cancer free.

so please, if you are not wearing sunscreen, do so. you can not change how much unprotected sun damage that you may have received when you were a child, but do the next best thing. visit your dermatologist yearly, or more frequently if necessary, for an all over skin check. it is not a difficult test, and your body will thank you.

Monday, February 6, 2017

"...put de lime in the coconut, she drank 'em both up...she call the doctor, woke "im up.. said, " doctor, ain't there nothin' i can take, doctor, to relieve this belly ache...you put de lime in de coconut, drink 'em both together, then you feel better...yes, you call me in the morning and i'll tell you what to do" coconut song, by harry nilsson

honestly, if you have not heard this song, it pretty much describes  what thyroid patents go through just trying to get our lab values correct for us, so that we feel more " normal". i say more normal, because even the best hormone replacement drug or dose does not come close to a healthy functioning thyroid gland!

so i have been on the new drug- Nature-throid, for about three months now. i just had an office visit, and blood work with my endocrinologist to determine if this is working better for me. i had previously been on Levoxyl- which is a synthetic, t4 only drug. the Nature-throid is a naturally derived combination of t3 and t4. just to give you an overview of some of my labs, previously- in october, my tsh was 0.025( essentially zero), my t4 was 1.79 ( this is a little on the high side), and my t3 was 2.4 ( a little on the low side). my anti- thyroglobulin antibodies were less than 1.0 IU/ml which is considered negative. without going into a detailed explanation of anti- thyroglobulin antibodies, i will just say that in the thyroid cancer world this is considered being thyroid cancer free. for 3 years, my anti-thyroglobulin antibodies were elevated. my endocrinologist had almost decided that i needed another dose of the I-131. my body must have heard her, and said "no, no, no" because my levels went down to normal after that. thankfully. i hope never to glow in the dark again, ha ha ha.

this is what my labs were this time: t4- 0.74 ( now, this is low!)  tsh- 0.332 ( still considered low, but up quite a bit from october. this makes me nervous- i will explain why later). t3 was 2.7. this is up a little, but still lower than i had hoped for. i feel that i need to be a little over  3, to be feeling less hypo. ( the range is 2 to 4.4). i had hoped that with the nature-throid, having the t3 in the drug,it would raise my t3 more than it actually did. i am going to explain my feelings on each of these three lab values. what i think they should be to enable me to feel better. i will also explain my endocrinologists thoughts, which are not always in sync with mine.

first, t4. at times, my t4 has been 2.0. i will admit that this is too high. (the range is 0.82 to 1.77). when a person's t4 gets too high, one could have heart palpitations, and be more susceptible to osteoporosis, as well as having other HYPER thyroid symptoms. i felt fine when mine was 1.79. i actually  felt fine at 2.0, which it has been on occasion,  but my endocrinologist was nervous. she was afraid that i would develop some heart arrhythmias. ideally, i would like for this to be 1 or over. this is where the "not quite in sync" with my endocrinologist's thoughts come in.

next, t3. this is the "energy" part of the thyroid hormone. t4 is metabolized to t3 and gives you energy, helps with weight loss, as well as other wonderful things. too much of this could also cause osteoporosis, though. bummer. i have had a love/hate relationship with t3 since i started my journey. my endocrinologist said that i can take additional t3, in the form of cytomel. i am taking the lowest strength, 5mcg, once daily. i think that it is already making a little  difference in my energy levels, among other things.i had been hoping that the combo drug would be enough to raise my t3 level, thereby causing me to feel better, but it did not. too much t3 can also cause heart arrhythmias, and can make you feel jittery. it is a slippery slope, folks.

last, but not least, tsh. my endocrinologist has been keeping my tsh at essentially zero, these past 6 years. i will give you the quick reason for this. tsh ( thyroid stimulating hormone) does just that- stimulates thyroid production by the thyroid gland. only thyroid cells can make thyroglobulin(TG). by measuring anti-TG antibodies,one can determine if there are any thyroid cells present. now if you do not have a thyroid gland, like me, and your anti - TG antibodies are positive ( over 1), then the thyroid cells are not contained in your thyroid gland, but are thyroid CANCER cells. these rogue cells can take up residence anywhere in your body, but especially like to stay in your lungs or bones. ( perhaps they get more frequent flyer miles if they stay here?).

 PROS to having a low, or near zero, tsh: does not stimulate any remaining thyroid cancer cells to go on vacation. CONS to having a higher tsh: could possibly stimulate any thyroid cancer cells to go forth and multiply. a very low tsh ( near zero ) is also associated with heart palpitations and osteoporosis. my endocrinologist said that she was comfortable with my tsh even being 1. me, not so much. i worry more about stimulating any thyroid cancer cells than i worry about heart problems. and by the way, my bone density test has actually improved over the last one! i attribute this to taking a prescription dose of vitamin d, but this could be a whole other blog.

there are several other tests that a patient would want to get from their doctor, especially if that person has a functioning thyroid gland. i am not going to discuss those other tests, but you can look them up on a reputable web site, such as the one hosted by mary shomon, called about thyroid.com. ms. shomon also has several really good books on thyroid function, tests,etc.

so what now for me? well, i am not giving up on the nature-throid. it is a naturally sourced drug, and considered hypoallergenic, which means that it is free of a lot of binders, colors, and other artificial things that i do not want. for whatever reason, i have trouble getting a high enough t3 value, and this has contributed to me not feeling well. so, i am also going to be taking the cytomel at least once a day. my endocrinologist said that i could take it twice a day if i needed to do that. i am proceeding slowly with this. sort of titrating up to a dose that hopefully works for me. i have to have blood work done again in may. the results will be sent to my doctor- no office visit this time. in august, i will have more blood work done, and an office visit as well as my usual six month ultrasound( to make sure that i do not have any hob goblins hiding out in my throat).

at the end of this month, i will be getting different  blood work done  and have an office visit with my oncologist. i still have to see him every 4 to 6 months for my breast cancer check ups. i think that i will just add some lime to my coconut and call all my doctors later. much later.

Tuesday, January 24, 2017

"You can get anything you want, at alice's restaurant"....well except for sulfite free food, of course

first, i  will give you a list of the names for  the sulfites that are added to foods to keep them fresh and looking gorgeous- ready for their close up, you might say. this is not a complete list, and some foods have naturally occurring sulfites, but i will get to that later. here is a list of some commonly used sulfite preservatives: sulfur dioxide, sodium sulfite, sodium bisulfite, sodium metabisufite, potassium metabisulfite, calcium sulfite, and calcium bisulfite. sulfites have been used since , well forever, to prevent browning, control growth of microorganisms, to act as bleaching agents, as well as being antioxidants. in an article by the university of florida IFAS extension( Grotheer, Marshall and Simonne) sulfites have been used since 1664( yep, that is not a typo), and have been approved for use in the united states since the 1800s.

they are used on fruits and vegetables to prevent yucky browning, on seafood- especially shrimp- where they are used to prevent something called" black spot". they are used in dough as a conditioner. sulfites are also used in certain food starches as a bleaching agent. in wine, sulfites are used to inhibit bacterial growth. there is a double whammy with wine though. grapes, especially while undergoing the fermentation process, produce "naturally occuring sulfites". this is unfortunate- i used to like to have a glass of red wine( supposed to be good for you) every once in a while. also unfortunate, is the use of sulfites in some pharmaceutical medicines to maintain stability and potency. i know of a few medications ( i found out the hard way on these) which i will list. i would also mention here that it is nearly impossible to find out which medications contain sulfite preservatives. i have called companies using my " i am a pharmacist" card, and sometimes found it impossible to get correct information. the medications that I KNOW contain sulfites are: brand name synthroid, advair inhalers, long acting steroid injections ( like you would get at the physician's office for a bad knee), and my all time favorite, the Epi pen. yes, an injection for an allergic,or anaphylactic reaction contains sulfite preservatives. this makes things really interesting for me as well as other people who have not just sulfite sensitivity, but go on to have full blown anaphylaxis after ingesting sulfites. i will also add here that cosmetics, body washes, hair spray, shampoo, moisturizers,etc   contain sulfites for stability and preservative purposes.


in an article on the website " about allergies" by Judy Tidwell, she reports that one person in a hundred are sulfite sensitive. the author also says that anyone can become sulfite sensitive at any time in his/her life and that no one is sure what triggers the sensitivity. in my case, when i was sulfite sensitive, i had much milder symptoms that the anaphylactic reactions that i have now. if a person is sulfite sensitive, that person might have stomach upset, digestive problems, a mild headache,etc. there is no treatment for sulfite allergy, unfortunately. one must just avoid all foods that may contain sulfite preservatives. i have hydroxyzine on hand for the reactions, as well as some sulfite free epinephrine injection for more severe reactions. i might add here that the sulfite free epinephrine is not being made anymore, to my knowledge.  i do not like the idea of injecting myself with sulfites to treat a sulfite allergy, but hopefully i will be able to find some more sulfite free epinephrine injection soon.

it would be a shorter list if i listed the foods that DO NOT contain sulfites. basically, organic foods are safe for the most part. but as i said, grapes naturally produce sulfites, as do onions and garlic. as you can imagine, if i want to be reasonably  sure that i am not going to have a sulfite reaction, i need to cook my own meals. i have not eaten out in a restaurant in over fifteen years.even if i am careful,  it is still not a given that i will not have a reaction. i had three last month. one reaction was after i ate a piece of seafood. the person at the seafood market assured me that the fish had not had any preservatives added, but i did not go by one of my rules: if it is too white, or is something that can spoil easily and looks too good, then it is too good to be sulfite free.

you may be wondering why i am talking about sulfite allergies on a thyroid/breast cancer blog. it took me several tries to finally find an allergy doctor who sucessfully diagnosed my problem. i started going to her in about 2009. at that time, she told me that i was one of the few patients that she saw that had the more severe anaphylactic reaction to sulfites. she also told me that she believed that i had cancer somewhere in my body that was causing my immune system to be overloaded, leading to a more serious reaction to sulfites. in 2010 my thyroid cancer was diagnosed. i do not believe that this was a coincidence. i am not saying that this holds true for everyone with a sulfite allergy- especially those who have the sensitivity, and not full blown anaphylaxis. i just believe that the sulfite allergy damaged my immune system, and had some part to play in me having cancer. i did ask her if by successfully treating my cancer ( surgery and chemotherapy) would reverse my sulfite allergy and she said probably not. once allergy pathways are established, they are with us for the long haul.

there are several take- aways from this blog. first, i wanted to inform others about sulfites and sulfite allergies. someone might be struggling out there with digestive issues, headaches, shortness of breath,etc  after eating  sulfite containing foods( or using sufite containing cosmetics or medications ) and not have a clue as to  what may be causing these problems. avoidance of known sulfite containing foods, etc  is the only safe way to determine if this might be your problem. one allergist who i did not see for long, said that he could give me a "large dose" of a sulfite preservative and "observe what happens ." since no one knows exactly what a lethal dose of a sulfite compound might be, i said no thank you and found another doctor! besides, i know exactly what happens to me after i ingest sulfites, as do my family members.

i do not feel sorry for myself. but it is challenging to travel anywhere for any length of time, as i have to be able to obtain and cook my own food. my husband and family are amazing and very supportive. they eat what i eat. and if we  go out to a restaurant  for a special occasion, i either bring along a little something to eat, or i just sip some tea that i bring with me. i will admit that this was awkward at first. we usually have family dinners at home  anyway, but it does limit my interaction with others to some degree. people have a hard understanding just how limited my diet is. they do not understand that while i would LOVE to have some of their wonderfully prepared food, i would HATE to have an anaphylactic reaction. one of the symptoms of an anaphylactic reaction is the "overwhelming feeling that you are going to die". this must be part of the "fight or flight" mechanism. i was relieved to read about this in an article on allergic reactions. i was also  relieved that it was just not me- that others feel this as well.

so that is sulfites 101 in a nut shell, as the saying goes.  many things happen to our bodies when we have cancer,chemotherapy, treatments, scans,etc. . it is not a "one and done" type deal. we are dealing with anxiety, major changes in our bodies, life style changes, and so much more. at this point, i am dealing with " cancer  survivor"  type issues. i am trying my best to make positive changes in my health care. in the care of me. cancer has been sort of a wake up call. yes, i am important,too and i need to tend to myself, as well as tending to  others.








Monday, January 2, 2017

I do not believe in New Year resolutions,...well, not exactly

every year i read about  or hear people talking about their new year resolutions. i decided a long time ago, that making resolutions really was not for me. perhaps it was the fear of failure on my part? anyway, i do examine the past year's life events, and i try to come up with what i used  to call my goals for the new  year. the term goals sounded too much like resolutions to me, so this year i have decided to make some " lifestyle changes" that will hopefully  benefit me in the coming year. call it what you will, i have decided to try to make permanent lifestyle changes for the coming year(s).

some of these ideas  are simple- things that can be  found in the pages of  any popular magazine. i was reading a post by an expert on alzheimer's disease the other day, and i liked a lot of his top ten things to do to that would be beneficial for good brain health. i am going to incorporate some of the ideas the expert mentioned, along with some of my own. of course, i can not start any list of lifestyle changes without a biggie for me, and one that goes without saying- NO CANCER FOR ME THIS YEAR! hopefully, any other year, as well.

so, here is a list of some of my  "lifestyle changes" for this year, and hopefully, in  the years to come. maybe it will give you some ideas of your own, or some inspiration to try some of these ideas out in ways that suit you.

1. get more exercise. see, i told you that they were simple ideas! every popular magazine out there has an article on this i am sure. my problem is that i was scheduled for a knee replacement last year- a week before my bilateral mastectomies. needless to say, the knee replacement surgery went on the back burner. my knee is getting worse, and exercise is challenging to say the least. i had to stop my beloved zumba classes( after doing them for the past 5 years). of course, i am able to walk. but let's just say that a fairly fast turtle, perhaps even a very fit snail, could beat me in a foot( or whatever) race. i abhor the idea of more surgery at this time. my physical therapist said if i could put it off for about 5 more years, it would be easier for me to recover from the surgery. i think i can not wait that long, unfortunately. and if i do not get some good exercise soon, i just may be able to be a stunt double for Jabba the Hutt.

2. get more sleep. when we are sleeping well  is the only time that our brains are not making amyloid plaques. these fiendish creatures not only affect brain function, but they may also trigger inflammation, and cause the destruction of disabled cells. sounds to me like an episode from the walking dead. good information to have, though.

3. incorporate the "Mediterranean diet". this diet is pretty self explanatory. less red meat ( i do not eat that anyway), more chicken, vegetables, olive oil, and here is a real challenge for me- less refined sugar. i have a sweet tooth that i am going to try to reign in this year. i can not eliminate all sugar from my diet ( i am NOT Gyneth Paltrow), but i do think that i can at least cut down a bit. i plan to do this gradually...........

4. learn something new! learning new skills improves our brain health. while it is a complicated process, suffice it to say that learning something new and practicing it makes our brains more elastic. learning kind of improves our data transmission, you might say. while learning to play a musical instrument is probably the best activity, there are other things that a person can do. several years ago, i took a stained glass course. i made a fairly simple stained glass panel of a flower. i love working with stained glass, and i have located a class that i am planning on taking. i am not putting any pressure on myself to exceed in this; i am going to do  it for my good old brain, and for the enjoyment of working with stained glass. which brings me to bullet point number 5..

5. try to reduce stress. i use the word " try", because some stress is good for us. remember the tiger in the jungle? flight or fight? we just do not need to go overboard on the stress thing. too much stress makes our bodies susceptible   to inflammation, which can cause infection, stress has also been linked to cancer. i have some anxiety related stress wondering if "the big C" will be paying me another visit. scans and checkups are difficult, so i need to get more of a handle on this. which leads me to number 6 on my countdown.....

6. practice meditation or mindful thinking. some people achieve peace when they pray, and that is good of course. i think that a somewhat structured or guided meditation plan would also  be very helpful. i have not worked out all of the details on this as yet. i do know that being out in nature, which is easy to do where i live- provided the weather is good, is very beneficial to my mental health. i feel at peace and less stressed when i am outside and aware of my surroundings. some people just trudge on ( and i have been guilty of this, plenty of times) and forget to look up at the sky. notice beautiful bird song. touch the water in a stream. before i get too carried away, i will just say that we are all creatures of the universe and need to appreciate the world around us.

7. take my vitamins. i have read that vitamin B-12 is very beneficial to good brain health. do i sound too much like the scarecrow from the wizard of oz or what? i have a brain, i just want to keep it working as well as possible.

there you have it. or most of it, anyway. my ideal lifestyle changes. this year,  if i can do even a small part of these things, i will be better off than i was last year. and that is the idea, isn't it?