Friday, September 15, 2017

" 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

i realized the other day, that i have been dancing with the "big C" for the past seven years now. the first time i got a cancer diagnosis ( it was thyroid cancer)  i was at work. my doctor called me ( she could not reach me at home) to give me the news. needless to say, i was pretty upset and had to go home. then i had three skin cancers thrown into the mix- they were not serious, but disconcerting nevertheless. the third time, and i sincerely hope the last time i hear those horrible words, i had left work, thinking that i would return after i had a 3D mammogram. i had been called back, after an initial mammogram a couple of times  before because i had dense breast tissue. i was not worried at the time, but did worry when the radiologist ordered an ultrasound. i called work and told them that i would be back- but a little bit later than i had thought.

time seemed to stand still . the technician came into the room where i was waiting and told me that the radiologist wanted to speak with me in his office. my heart almost stopped; this was new territory for me. this radiology center gives a long stemmed rose to all female patients having mammograms or ultrasounds. i remember taking the rose that the technician offered me after i was dressed. i remember walking into the radiologist's office. it was dark, and he had a picture of  my left breast up on his computer screen. i laid the rose down on his desk and looked at the monster inside of me. i am not an expert at reading ultrasounds or xrays, but even i knew that what i was looking at was not normal. the radiologist let me come to my own conclusions. he said that we would not know for sure until after i had had the needle biopsy, but the doctor, nurse and i all knew within a reasonable doubt, what the outcome of that would be.

i called work and told them that i would not be coming back in that day. i drove home on auto-pilot, and i am not sure where the rose ended up. that was the beginning of  almost a year of more biopsies, surgeries, chemotherapy and reconstruction. most of the time i was present in body, but my mind was elsewhere. some place safe. my husband was with me for all the other tests, treatments,etc. so i was fortunate that he was my eyes and ears during this time. it is the most surreal feeling to be told the unimaginable. i made treatment decisions, informed ones, but my body was on auto pilot. i just needed to get through the medical part- survive the surgeries and chemotherapy- and then i would deal with the emotional part.

i had always thought that only victims of war get PTSD. i was wrong. it was after the worst physical pain that i began to suffer in other ways. panic attacks, sleep disorders, coming to terms with the fact that i might not survive the cancers, worry for my family, just to name a few things that i was obsessing  about now . my brain had left that safe place and now i was having to deal with all of the other issues that i had pushed aside. i felt guilty for feeling these things. after all, i had wonderful support from my family and friends. i was able to write about what was happening to me in this blog- which has been my lifeline. why then should i be feeling all of these negative emotions?

a few months ago, i happened to read an article about cancer patients and PTSD. a light bulb came on. i realized that i needed some major life changes if i was going to get better. i have  already made some positive changes in my life, but i need to make some more. i retired from work- about two years earlier than i had first planned. i loved my work- i like to help people and i love to do medication counseling. but the store where i work is a high volume, stress filled environment. i know that stress alone did not cause my cancer, but stress probably weakened my body's immune system and that was certainly not helpful.

another thing that i  have done is to get involved with doing some crafts that i had always wanted to do. i am making soap, candles and stained glass pieces. i also read that doing crafts, learning to play a musical instrument- anything that is a newly learned activity, is helpful in dealing with the symptoms of PTSD. my husband and i have spent the majority of our lives working and taking care of our family. working long hours, 13 hour days to be precise, as well as weekends and holidays left  little time for anything else. i am happy to say that now  my husband and i are cultivating friendships. it is wonderful to be able to spend time with friends- both old and new. we actually have time to do things with our friends. and of course, two of my grandchildren live close by, so we are so happy to help out when their parents need us. actually, it is a pleasure to be with our grandchildren, and my husband and i love being able to say " yes we can" instead of " no, sorry, we have to work."

i have read that exercise is also good for PTSD. i have a bad knee and have not been able to go go zumba for a couple of years. i can not find a tai chi class near me, but i have purchased a video and hopefully doing that, and walking, will become a healthy habit for me. i am also working on my diet- not just to lose a little weight, but just to incorporate healthier foods into my diet. sounds like i am making new years resolutions here, but i am just trying to come up with a plan that works for me. counseling is also another great option. i have considered this, but have not made any immediate plans to do this- yet.

cancer took my joy. it has impacted my life for the past seven years. some people do not understand that just because the  medical treatments are over, that it is over and done for cancer patients. i think this is when the hard part comes. how to deal with test anxiety, worry over the smallest symptoms- is the cancer back? and of course, worry that the cancer will come back with a vengeance and the impact that it will have on your life and the lives of your family and friends- the people who love you.

i am working hard to recapture my joy. i am trying to deal with PTSD, as well as side effects  of the chemotherapy medication that i take every day, and will have to take for the next 3 years or so. i am also coping with the side effects from the surgeries and chemotherapy that i had 2 years ago.  i am not quite to my happy place yet, but i sure am trying. the "big C" took my joy, but i am working to get it back.

Wednesday, September 6, 2017

" how does it feel? how does it feel? to be on your own, with no direction home, like a complete unknown, like a rolling stone. " like a rolling stone, by bob dylan

oddly, or not so oddly, enough this blog is going to discuss salivary gland dysfunction- including salivary stones that can occur after treatment with radioactive iodine in patients who have had thyroid cancer. i am afraid that i know quite a bit about this subject from first hand experience. i had my I-131 ( radioactive iodine) in 2010. it was a large dose- 155 milicuries. in about a year after my I-131 dose, despite faithfully  following instructions that i was given ( drink lots of water, suck on sour candy, drink sour lemonade, to name a few) i developed salivary stones. how does it feel? well, bob, not very good. my first time experiencing salivary stones was when i was at work ( of course). my technicians and cashiers noticed that my jaw was swelling, looked  red and was  hot to the touch. they asked me what was wrong. i had no idea. i was praying that it was a dental issue ( also a side effect of the I-131) so i made an appointment with my dentist. he said no dental problems, but he felt that it was salivary stones in my parotid salivary glands and referred me to an ENT for a diagnosis. the ENT agreed with my dentist, and so it began.

here is the short version of what happens with I-131 ingestion. the I-131 is meant to kill any rogue thyroid cancer cells still present in the neck area. what it also does is hone in on the salivary glands where it is concentrated and secreted into the saliva. this appears to be dose related. NOW, not when i received my I-131 dose, the recommended max dose is generally 100 milicuries. the trigger dose for salivary gland issues, at least in a couple of articles that i have read, appears to be about 150 milicuries and above. other fun side effects from the I-131 include: dry mouth, taste alterations, increase in dental cavities, facial nerve involvement, yeast infections of the mouth, inflamed and sore mouth- to the extent of interfering with eating, and neoplasia( abnormal growth- a tumor, but not always cancerous). interestingly enough, there is now a drug, not available when i took the I-131, called ethyol ( amifostine) which is sometimes used to protect the salivary glands and kidneys. i am not familiar with this drug. i think it is given IV, but if someone reading this blog is about to get some I-131, it would behoove you to ask your doctor about this, and ask if you would be a candidate to receive this new drug.

so salivary stones and salivary pain and swelling may be due to thickened saliva and/or scarring of the salivary glands due to inflammation caused by the I-131. you might be asking yourself about now if i am having regrets about getting the I-131. and the answer is no. my thyroid cancer was aggressive ( papillary with follicular variant ) , stage 3. for a person who has a lower stage, less aggressive thyroid cancer, it would seem prudent to talk to the doctor about a lower dose of the I-131, if needed. some patients choose not to take the I-131, and that is an individual decision. my doctor and i felt that the benefits outweighed the risks of the I-131. i urge people to research and read all the material available  on the I-131, consult with your doctor, and then make the best decision for you.

so, what does one do who has salivary issues or salivary stones? an office visit with  a good ENT is a pretty smart starting point. i will use myself as an example when i am talking about treatment. we are all different, though, so what works for me, might not for someone else. also, i will mention here that there is laser treatment to unblock salivary glands. this is available, for the time being, only in larger cities. i am sure there are risks involved with this, as with any procedure, and i do not know the pain involved, the risks  or cost of this procedure. frankly, it could be more painful for your wallet, if you know what i mean.

what my ENT recommended to me was as follows: gentle massage, heat on the area, sour lemonade or sour candy, lots and lots and lots of water, and if needed, ibuprofen for pain and inflammation. over the years, i have noticed that certain foods tend to cause a "salivary gland flare" for me. these would be chocolate ( !) and highly sugared foods. there are others, but these are things that i have to be careful with. i can have SOME of them, but if i consume too much, i will usually have pain and inflammation in my salivary glands. prevention seems to work best for me. i also have problems if i do not drink enough water. i have purchased a few 24 oz water bottles, and i try to keep up with my water intake. this also helps with dry mouth. there are commercially available products that you can buy for dry mouth, but drinking lots of water seems to work best for me.

i hope that i have answered a few questions about salivary gland pain, swelling and stone formation. it can occur days to years after a single dose of the I-131, or not at all. it seems to occur in those patients who have  received a larger dose of the I-131. in the majority of cases, the salivary glands will heal on their own, requiring no further treatment. in others, me for example, it may be an ongoing problem. knowing how to deal with the symptoms, and even better,  preventing  a "flare" ( my word for this) seem to work best for me.what prompted my blog on this subject was the fact that i went months and months without a flare, and then had one a few weeks ago. also, a good friend of mine is dealing with this issue. if someone has further questions, i will be glad to address them if i can. but i do recommend that you see an ENT to get a definitive diagnosis as a starting point. see there, we are not on our own, and we have some direction home.  

Monday, September 4, 2017

" you certainly usually find something if you look, but it is not always quite the something you were after. " a quote from the hobbit, by j.r.r. tolkein

generally i love the month of august. i get to celebrate my birthday near the end of august, and i am still enough of a child to delight in the celebration of my birth. this year however, while i enjoyed my birthday very much- thanks to my family, especially my grandchildren, all three of my six month cancer check ups became due in the month of august.

at the first of august, i had my thyroid cancer checkup- ultrasound and blood work. everything was fine here- just some adjustment to my thyroid medication dose, which is always a slippery slope, as every thyroid patient, cancer or not, well knows.

towards the end of the month, i had my breast cancer check up- blood work and office visit. you may be wondering at this point if i have any blood left. my endocrinologist ordered 5 tubes taken, while my oncologist only needed two tubes. that left a little left over for me. my tests all came back fine, i suppose. my oncologist was on vacation, and i saw a nurse practitioner. not that i have anything against nurse practitioners, but this one was grumpy and needed a nap i think. i will be seeing my oncologist in february- along with everyone else now, i guess.

my third" six monther" ( i made up a  new word, spell check hates this) was with the dermatologist. i do not consider myself a skin cancer survivor, but i have had one basal cell removed from my face, and two squamous cell carcinomas removed from my leg, so i guess that technically i am a skin cancer survivor,too. not to insult skin cancer survivors- far from it.  basal cell generally does not cause too many problems, but squamous cell can be very aggressive, and people can die from this if it is not diagnosed early enough. i have mentioned the importance of wearing sunscreen in one of my earlier blogs. of course, the skin cancers most of us adults are seeing now were caused by the sun exposure that we received when we were children. you know, back in the day, when we put baby oil on our skin and baked our poor bodies in the sun for a few hours or so. of course, in my case, i did not tan- just freckle and burn. also, one of my college  roommates' dad was a plastic surgeon. my roommate told me that some of his best customers were those people who had had too much sun exposure. in fact, her family never went to the beach on vacation- they always went to the mountains. my roommate had very white skin when it was not fashionable. since i generally  learn by example, i stopped torturing my skin and tried not to get sunburned- at least not as much.

still, i was very surprised when my dermatologist had to take a biopsy of (what he thinks is ) another skin cancer on my face. of all of my six monthers i was not expecting to be concerned with my dermatology check up. i am not supposed to get the results for about two weeks. if it is not skin cancer, then i am done and no worries. if it is, then i am in for another mohs procedure on my face. hopefully that will be all that i will have to have done. i have had the mohs procedure for the basal cell on my face, so i know what to expect with that. not fun, but as my dermatologist told me: " well, what do you expect? you are a redhead in the south!"

i have one of those small circular band aids on my face, and apply some antibiotic ointment daily. i did not think that my grandchildren would notice it, but even my nearly two year old granddaughter said. " mimi, what happened to you?!!" i told her that i just had a boo-boo on my face. she was o.k. with that, but i had to go into further details with my grandsons. i could have said, well if you pick a fight with a dermatologist, you will not be the one to win, but i did not want to scare them. after all, they are" nearly redheads" in the south,too.

so now, somehow, i have all of my six monthers on the same schedule! i am not sure if that is a good thing, or a bad thing. i guess it is good that i can get them all over with and have a six month break. hopefully soon, they will all graduate to one yearers. sorry, spell check.


Tuesday, August 22, 2017

" i see trees of green, red roses too, i see them bloom for me and you, and i think to myself, what a wonderful world. i see skies of blue and clouds of white, the bright blessed day, the dark sacred night and i think to myself, what a wonderful world....i see friends shaking hands, saying " how do you do?", they're really saying, " i love you". what a wonderful world, by louis armstrong

a very dear friend of mine passed away today. she was not a "blood relative", but we always said that we were family- sort of sisters in friendship, you might say. i am going to miss her terribly- she had a very good heart. when i was undergoing chemotherapy in 2015, she called me almost every day to see how i was doing. some of my friends did not call to check on me. i suppose that they did not know what to say, and in the past i may have been guilty of this as well. but my faithful friend never let me down. my sweet friend had been in declining health for a few years now, and had had a few very close calls, but she always managed to battle back- until today.

i have been trying to make sense of this loss today. what have i learned? what would my friend like to say to me if she were here? i think perhaps she would say, " bea, make the most of each and every precious day that you have on this earth." i have had a couple of close calls myself in the past seven years. each time, i reminded myself to be present in life- to tell people how much i love them, to enjoy the small and wonderful things around me. today, my husband and i took care of our five year old grandson, as we will be doing again  tomorrow. his parents are teachers, and had to go back to work. i am so thankful that we can help our family out, and we certainly enjoy each and every minute we get to spend with any of our grandchildren.

my five year old grandson said the most amazing thing to me  today. it was raining, and i said, " oh, i am so sorry that it is raining!". he said, " mimi ( that is my REAL name, by the way), i love the rain!" i said, why do you love the rain? i thought that he would say he loved jumping in mud puddles, perhaps getting to be inside to watch a movie or something like that. what he said was this: " mimi, i love the rain because it is a way that God talks to us. He talks to us with  the sunshine, too." i hardly knew what to say to that. i am not one  to force my religion on anyone else. i am not one of those " my way or the highway " kind of people. i believe that God hears a prayer said in nature, just as clearly as he hears one that is said in a house of wood and stone. the wisdom of children is powerful, true and not to be ignored. i told my grandson that i agreed wholeheartedly with him.

with this loss, i am also reminded of that statement that keeps popping up on social media. it goes something like " eat the cake, buy the dress, take the trip, etc." why is it so hard for us adults (meanwhile children have things pretty much figured out, in my opinion) to enjoy life and be kind to others? if there is something our hearts desire, we should do it now. we may never get that chance again- nothing is guaranteed in this life.

if you happen to be a cancer survivor - be it thyroid, breast or any other- i hope that you can appreciate all of the beauty in this world. there is kindness in spite of some madness that has been happening. enjoy your life and be grateful for every wonderful thing that comes your way. i am sure that my good friend would remind me of this fact as well.

Sunday, August 6, 2017

" looking back on when i was a little nappy headed girl, then my only worry was for Christmas, what would be my toy. even though we sometimes did not get very much, we were happy with the joy the day would bring....i wish those days could come back once more, why did those days ever have to go, i wish those days could come back once more, why did those days ever have to go, cause i love them so." i wish ( somewhat altered) lyrics by stevie wonder

i posted my blood work, ultrasound and appointment results on facebook, but i realized that not everyone who reads my blog is my facebook " friend". so for those of you who already know how it went, sorry to repeat this subject. i got a good check up basically. the most important thing, was that my thyroglobulin was less than 0.1 and  my anti- thyroglobulin antibodies were less than one. these two numbers were elevated for three years after my surgery and radioactive ( I-131) iodine treatment. those were a tough, worrisome three years. luckily, my endocrinologist did not panic, and we just kept my TSH very low, or suppressed, near zero, and waited it out. my doctor was considering another round of the I-131 just before my thyroid cancer indicators( above mentioned blood work) returned to the cancer free zone.

as far as my other blood work went, my TSH was good - 0.006- a little low, hahahaha. but that is the way that my endocrinologist wants it- i will explain why later in this blog. my doctor scared me a little during my office visit  when she first started talking to me. she said, " how are you feeling? are you having any heart palpitations, chest pain, shakiness, etc?" i said no, i was still feeling a little tired in the afternoons, but that was all. a few months  ago, my endocrinologist changed my medication. i went from the synthetic levoxyl and an occasional cytomel tablet in the afternoon, to a naturally derived medication. i know several people who do wonderfully on a naturally derived thyroid medication. in fact, a person in my family, who is hypothyroid, but who has not  had thyroid cancer, is taking this and has the best blood work numbers they have ever had. and best of all, this person feels better than they did when they were on the synthetic medication.  i really, really, really wanted this naturally derived medication to work for me, but it did not. i was extremely tired, depressed, cried a lot,etc - i knew that something was up. and i had to admit, it had to be the fact that  my thyroid medication was not working for me.

 so my doctor switched me back to the levoxyl/ cytomel combo.she called in a higher dose than i had been on previously. i thought that maybe she was trying to jump start my system so to speak.  i had been taking the higher dose of  levoxyl for about a month before my appointment. the reason why she was so concerned about how i was feeling was that my T4 had gone out of sight! the so called normal range, according to this lab- and labs have slightly different ranges- is 0.82-1.77. my value was 2.63 which puts me WAY into the hyperthyroid range. previously,  the highest my T4 has ever gotten to had been 2.1. my endocrinologist freaked out then, so you can image her concern this time.

my t3 was wonderful- 4.1 ( the range is 2.0-4.4). this is the " energy" part of a thyroid medication. i have previously not been able to hit 3.0 mark. but of course, this value  will go down again as i can not continue to have such a high T4. just a side note for those of you who may not be aware of this- synthetic thyroid medications ( levoxyl, synthroid, levothyroxine,etc) are just made up of T4. they  depend on the body to convert the T4 to T3 which mainly supplies the energy to the body. naturally derived hormone drugs ( nature-throid, armor thyroid, etc) contain naturally derived T4 AND T3. this is helpful if there is a problem on a cellular level- if your body, for whatever reason, has trouble converting T4 into the T3 that you need for your body to function properly. it seems to me that the naturally derived thyroid hormone would be the best choice, IF IT WORKS FOR YOU. but unfortunately, it did not work for me. as i have always said, this is not a one size fits all kind of thing. what is a wonderful choice for someone else, may be a terrible choice for you.

my endocrinologist lowered my dose of levoxyl( T4) , and added an afternoon cytomel( T3) if i need it. i really was not happy with this, but i understand that i can not have a T4 that is that high. having a T4 that is too high can cause heart arrhythmia's, chest pain, nervousness, osteoporosis, just to mention a few goodies. it is frustrating to me how complicated thyroid hormone dosing can be. most people, not thyroid patients for the most part, do not realize how difficult it is to get a thyroid dose, or dosage form, that is going to make the patient feel good and be able to function at a somewhat normal level. it is a trial and mostly error experience, at least for me. my endocrinologist has scheduled blood work for me again in three months to see how i am doing. which brings me to the topic of my next appointment...

i was really hoping that i could "graduate" to once a year tests, blood work and ultrasounds. my endocrinologist told me that because i had an area of " very aggressive thyroid cancer" i would need to stay on the every six months visits for a while longer. also, she wants to keep my TSH suppressed for the foreseeable future.  ( i said earlier that i would explain this). keeping the TSH at essentially zero is supposed to keep any thyroid cancer cells that are roaming around in the body from becoming active storm troopers. i was very O.K. with my doctor wanting to keep my TSH at zero. being a two time cancer survivor, i am nervous about there being a possible third time.

sometimes i think about my life before thyroid cancer or breast cancer. i try not to rehash the past, but i do sometimes long for it. i wish that i had never had cancer, to be honest. i have learned a lot from having cancer, though. i have discovered that i am stronger than i thought. i have found out how to be my own best patient advocate. i have really learned what things, and what people, are important in my life. i have learned that if i want to do something, i need to do it now, as the future is not guaranteed.  i have learned not to take anything for granted. and, probably the best thing that i have learned is to be grateful for everything good thing that comes my way.

Thursday, July 27, 2017

" here i am, on the road again. there i am, up on the stage. here i go, playing star again, there i go, turn the page." turn the page, by bob seger and the silver bullet band

it is that time again for me. i had my blood work done this week, and next week i will see my endocrinologist for a neck ultrasound, office visit and discussion of my blood work results. i used to have to drive down to raleigh to have my blood work done, then drive back the next week for my visit. since my physician likes lab corp( that is where her office sends the tests anyway) , she said if i could find an office up here, i  would not have to drive down to raleigh for the blood work. lucky for me, there is a lab corp office in boone. even luckier for me, there is an angel who works there. i am what the med techs call a "difficult stick". five times is my limit, as far as being stuck and not hitting gold. after that, i turn a whiter shade of pale, and start to break out in a cold sweat.

the "angel" med tech who works at the lab corp in boone, uses a butterfly needle. if you get blood drawn as often as i do, you will need to be familiar with a butterfly needle. these are much less painful for the patient and work better for those of us who have veins that like to make trouble. previously, when i had blood work done by less talented med techs, and after all those unsuccessful sticks, they would notice the back of my hands. and the med techs would literally salivate. i have " man veins" in the back of my hands. it is from opening about a million child proof bottles during my 40 years of pharmacy practice. but, as some of you might unfortunately know, hand sticks hurt- a lot.

getting back to the above mentioned angel med tech. she got out her butterfly needle, asked if i preferred one arm over the other ( i do- i can not have blood drawn or blood pressure taken in  the arm that i have lymphedema in) and then applied the tourniquet. then she did something that i have had only one other person do- she closed her eyes. she closed her eyes and gently searched my arm for that illusive vein. it only took a few seconds, and then she found it. i barely felt the needle and my vein held out for the FIVE tubes of blood that my doctor had requested for the blood tests.

you might be thinking at this point that having a relatively pain free and successful blood draw is a minor thing. well, i have to have blood work done several times a year. i am having testing anxiety already- it happens a week or so before my tests and office visits. not having to worry about passing out when they are drawing my blood is one less thing to be anxious about. i thanked this med tech- this is the third time that she has drawn blood from me and every time has been successful. the med tech probably does not know how much i appreciate her talent, and i do believe it is a talent.

one thing that i learned when i was having all of my tests and surgeries for both of my  cancers is that people who work in health care- from the people who clean your hospital room up to your  physicians can make your experience either a positive or negative one. small kindnesses are huge and make all the difference. being a patient instead of a health care provider gave me a new perspective on how to treat my patients. it is not enough to just do your job- and by that i mean the mechanics of your job. it does not cost anything to go the extra mile for someone. be kind, reassure someone who is anxious, take a little extra time to counsel or talk to someone who might need it. i always tried to do this when i was working, but i tried a little bit harder after my experiences on the other side of the counter.

so here i go again. i wish that i could control my test anxiety a little bit better. hopefully things will go well next week, my test results will be good, and i can relax until the end of september. that is when i go to my oncologist for my six months breast cancer blood work and tests. and so it goes.

Sunday, July 23, 2017

"...and the seasons, they go round and round, and the painted ponies go up and down, we're captive in the carousel of time. we can't return, we can only look behind from where we came, and go round and round in the circle game." the circle game, by joni mitchell

i was watching the cbs special this morning on cancer- which was very good, by the way. of course, cancer is such a big complicated issue, that it would be impossible to cover every type of cancer, potential problems associated with a particular cancer , treatments ,etc. but i will have to admit, the producers of this program did a pretty  good job. two predominate themes in this program, at least in my opinion, were the future of more effective treatments  and the  prevention of cancer.( i will lump those into one theme ). the other theme, as i saw it, was reminiscing , or looking back at choices made by cancer patients and the ramifications of their  choices.

in treating cancer, there is no one size fits all, unfortunately. there may be recommended guidelines for treatment in certain types of cancer, but there are treatment options and choices that every cancer patient has to make. it is really a gamble. what if the treatment causes problems on down the line? heart issues and possibly other cancers just to name a few . is the risk worth the gain in other words. when i was practicing pharmacy, i felt that the most important part of my job was to counsel patients on the side effects/ interactions of their medications. i felt that once the patient was aware of possible side effects, they could  weigh the risks versus the benefits of a particular medication. in most cases, i felt that the benefits would outweigh the risks, or side effects, but i always made it clear that this was the patient's decision. i told them to be their own best patient advocate. get the good advice from their physician and pharmacist, and then make a decision that was right for them.

i had to take my own advice and be my own best patient advocate for both of my cancers. choosing a physician, hospital, treatment plan,etc. were tough decisions that i had to make myself. that is not to say that i did not listen to my doctors, family and friends before making those decisions. but i am the one who ultimately has to live with those decisions. that brings us to the carousel part of this blog. having cancer has made me feel helpless at times. i do feel like i am on a carousel going up one day- feeling good about the choices that i have made, but then going down the next- doubting my decisions.

on the cbs program, there was a segment on " going flat" for breast cancer patients. that is a decision that i labored over. my surgeon and plastic surgeon were horrified that i was even considering not having reconstruction. my feelings on this were, well, i am losing both my breasts and even though my plastic surgeon is amazing, there is no substitute for a real breast. and i will not lie to you- reconstruction is painful. the process began when i was on the table having my mastectomies, continued during the time that i was having chemotherapy, and did not wrap up until six months later- with a final surgery to receive my permanent implants. there has been off and on pain in my reconstructed breasts, but it has not been unbearable. i think the one unexpected thing that sealed the deal for me, that finally made me realize that i had made the correct decision for me, was the 3D areola and nipple tattoos. when i look in the mirror now, i do not see two huge scars stretching over my chest, i see a semblance of normal. it is the new me 2.0. not necessarily the best me, but a more acceptable me to my eyes.

i will tell you one funny thing that was said  about reconstructed breasts. the plastic surgeon that cbs interviewed for the cancer program said, " well, i tell my patients that if they sleep on their stomachs, it will be uncomfortable. it will be like lying on a frisbee." hahaha... she is correct on this. i am a back sleeper totally, now.

so, as a cancer patient i go round and round on the carousel. i am up some days, and some days i am down. i look back at the decisions that i have made about my treatment and hope for the best outcome. i am not a warrior. i am not out to beat cancer ( remember, in my last blog i said that cancer beat the stuffing out of me). but i am a decision maker, a planner, and i try to stay positive and enjoy my life. really, that is all that any of us- cancer patient or not- can do.

Wednesday, July 19, 2017

" at first i was afraid, i was petrified...i will survive. as long as i know how to love, i know i'll stay alive... i've got all my life to live, and i've got all my love to give. and i'll survive, i will survive." i will survive by gloria gaynor

i started this blog back in april, 2010, when i was first diagnosed with thyroid cancer. it has served several purposes, i think. writing about my experiences has been therapeutic for me. it has helped me work through my feelings about having cancer in a positive way. also, it has always been my sincere wish that my blog posts will let people know that they are not alone in this cancer journey. for me, not knowing what might happen- and that includes medical as well as emotional issues, is the worst thing. if i can help someone who is afraid of the cancer road ahead of them cope a little bit better by knowing how things were for me, well, then i am  happy. i feel like i have accomplished something, albeit small.

one of my most treasured possessions is a book of my blogs, starting from may 8th, 2010 ( my first blog post )  through december 6th, 2010. my daughter had the book made  as a Christmas present for me. she put a picture of a beautiful butterfly on the front cover, a picture of our home on the back, and an inscription inside the front cover that still brings tears to my eyes when  i read it. it says, just a minute while i get a kleenex, " for mom, who has dealt with her thyroid cancer with humor, grace, and self-reflection. i love you!" i certainly hope that i have done a good job with that. adding a second cancer, breast cancer, in 2015, changed the tone of my blog a bit. while i still try to add humor whenever i can, i think my blog is now more reflective.

the way that i usually write my blogs is that a song pops into my head that i can not get rid of. from those lyrics, i start to think about what i would like to write about. occasionally, the subject matter comes first and then i match it up with song lyrics, but usually the music comes first. music has always been an important part of my life. it affects  my mood in a positive way and makes dealing with difficult issues, such as treatments, surgeries, outcomes,etc, easier for me . being outside in nature runs a pretty close second to music , though. i think that it is important that everyone decide for themselves what are  the best coping strategies - be it music, being out in nature, writing about cancer experiences,etc.and try to incorporate those things into your life as much as you possibly can. music, nature, and writing make me have a happier life. it might be bingo and margaritas for someone else, but whatever it is, my best advice is to go with it.

i recently read about an extremely talented mathematician, from iran, who recently passed away from breast cancer. her name was maryam mirzakhani, and  she was the first woman to win the math world's nobel prize ( it is called the fields medal ) for the first time. one of her co-workers said this:" a genius? yes. but also a daughter, a mother, and a wife." this made me think about the quality verses the quantity of life. certainly, i want to live as long as possible, but the quality of a well lived  life is immeasurably important. only a small percentage of us will be able to do things that are globally important and meaningful. the rest of us should do what we can on a " regional level" you might say to improve the lives of others. i feel that our actions do not have to be on a grand scale. what if all of us did just a few positive things? that certainly  could change the world for the better. or at least in our little part of the world.

it is important to survive. we should all do the best that we can, and all that we can,  to take care of ourselves. but i think that it is more important to actually live a good life .  none of us knows how much time we have here on earth. we can not control the quantity of time that we have, whether  we have a serious disease such as cancer or not . what we all can control, though,  is the quality of our life. help someone, love someone.

Thursday, July 6, 2017

" you, who are on the road, must have a code, that you can live by. and so become yourself, because the past, is just a goodbye...teach your children well..." teach your children, by crosby, stills, nash and young

i happened to skim over an article on facebook the other day, on a fairly popular cancer survivors website. the crux of the article was basically what lesson(s) cancer can teach us. the author of the article said something that resonated with me. this person said that one of her oncology nurses, and this was a no-nonsense, very professional, business like person ( i am describing the nurse here) asked the cancer patient what lesson(s) cancer had to offer them. the cancer patient said that she was surprised to hear this type of statement coming from a non "woo-woo" health care professional,  i believe her words were. i suppose she meant that this nurse was not of the new age persuasion. not that i think this topic is new age or any other age for that matter.

the article stated that this cancer patient had " beat cancer". i take issue with those words. first of all, i did not beat cancer, cancer beat the absolute stuffing out of me. it is sort of like when the flying monkeys got finished with the scarecrow from the movie " the land of oz.". do you remember when the poor scarecrow said something like, " well, that is just me all over!" and was picking up the straw and trying to put himself together again. that was what cancer did to me. i am still trying to put that darn straw back  where it belongs.

that said, i did indeed learn a few lessons from having had cancer. i always thought that i had things pretty well figured out in my life. go to work and take care of my family. once a year, my husband and i took a vacation somewhere, and vowed to take more time for ourselves going forward . this went on for absolute years. wash, rinse, repeat, as the saying goes. i knew that stress was getting the best of me, and that i needed to do some things that i had always wanted to do. but how? how could  i possibly  get off of the hamster wheel that was in charge of my life? well, when you get sick, your whole world changes. at first, and i think this applies to almost every cancer patient, you are just focused on the diagnosis, treatment, just the medical issues and your survival. as i have said before, your brain goes on auto- pilot and you are making medical decisions at a frantic and frightening pace.

when that part of your adventure is over, and you are in the recovery phase, also known as the what in the world do i do now phase , you begin to think seriously about your life. you managed to get off of the darn hamster wheel, but what now? i had some serious questions for myself at this point.one question was  how did i get cancer- two cancers that no one else  in my entire family had ever had. was it something that i was exposed to? something i ate? stress? i had no risk factors for either one of those cancers. although, in the spirit of full disclosure, several members  of my family had and still have thyroid disorders. no cancer, though, until me. i am almost positive that i will never be able to answer this question. the second question was where do i go from here?

 let me say now  that i enjoyed my work. was it stressful? yes, very. but sometimes i think that we are too quick to blame stress for a lot of our unfortunate health conditions. however, i did not want that level of stress in my life anymore. i found it hard to concentrate on my work after all of the surgeries and chemotherapy that i had to have. i could do it, it just took too much of my energy to do it well. so i had to decide what i wanted to do with the rest of my life. learning that i was mortal ( jeez, i could actually die from this!) was also a lesson for me. of course, i know that i will die at some point, but let's just say a cancer diagnosis is a not so friendly reminder of this fact.

i really like the words to "teach your children" that go:" you, who are on the road, must have a code, that you can live by. and so become yourself. " bingo. as oprah would say, that was my " aha " moment in my cancer adventure. i am becoming myself. it is a gradual process. i am doing the things that i love- writing, doing crafts, spending time with my husband,, spending time with my children and grandchildren. things that i did not have very much time for before i had cancer. i realize that i am very lucky to be able to retire now and do these things. i know that some people are not as fortunate as i am. they get their diagnosis when they are younger- when they can not disregard the demands of work, and when they have family obligations that make it impossible to do everything that they would like to be doing. even so, i think that there is a shift in thinking. cancer patients, for the most part, decide pretty quickly what things are important, and what things are not.

so, to wrap this up, cancer is teaching me ( remember, i am a work in progress) to become myself. to be true to myself. to be grateful, and appreciate even the small goodies in life. and thankfully, hopefully,  the  past will be " just a good-bye".

Tuesday, June 20, 2017

"anxiety, why do you always get the best of me? why am i never where i am supposed to be? it's the weight of the world, but it's nothing at all. .. i want to be strong and steady, always ready, now i feel so small, i feel so weak." anxiety, by jason isbell and the 400 unit

i will tell you guys a secret. well, actually, a few years ago, when i was " only" dealing with thyroid cancer, i wrote a blog about it. that nasty little secret has been following me around for several years now. it has a name- anxiety. my anxiety started when my thyroid went all crazy. and yes, i was HYPOthyroid. anxiety is more often associated with HYPERthyroid conditions, but i know of several other people who have had extreme anxiety that can be, at least in part, associated with being hypothyroid.

the unsettling thing about anxiety is that you never can be sure when it will strike. it is sort of like a poisonous snake hidden in the garden. there you are, having a good time, smelling the roses, when, BAMM, it comes out of nowhere. i had sort of gotten my anxiety somewhat  under control,thanks mostly to finding  an endocrinologist who decided to treat my symptoms, even though my blood work was, let's just say, unusual. as my family doctor put it " wow, your thyroid blood work does not make sense!". do you think??

then, seven years ago, along came thyroid cancer. stage three, fairly aggressive. anxiety slithered out of the garden and into my life in a big way. surgery, treatment, tests, it seemed like  i was handling everything well. if you suffer from anxiety,too, you know that it is sort of a closet disease. anxiety patients  deal, make excuses when we can not deal, and try to go on with our lives. honestly, though, it takes a toll. i think it raises our stress levels, which raise our anxiety levels- an endless cycle, it seems.

so, i was doing fairly well with the anxiety, and then came the breast cancer diagnosis out of left field. maybe it had been hanging out with the poisonous snake, but i certainly did not expect that one either. i think that i have done pretty well considering everything that has happened to me . i owe a lot to the support of my family and friends. but anxiety is a solitary stalker. as i said, you never know when or where  it will strike. it does not have anything to do with your happiness level, or what you have or have not. anxiety makes no sense whatsoever.

my anxiety is mostly vampiric in nature. i will admit to taking a mild anti- anxiety medication at bedtime, although this can be addictive, and i do not recommend this for everyone. it has helped me deal with the anxiety somewhat. another method- better, really, and not addictive, is deep breathing. yes, we all know how to breathe, but honestly, taking several deep breaths, in and out, and being aware of your breathing does help. meditation or praying also can help free up a cluttered mind, as i sometimes call anxiety. exercise is  a good method to treat anxiety. but i need a knee replacement, which i was supposed to have before my bilateral mastectomies, so exercise for me is somewhat limited at the moment. i am working up the nerve to have my knee replaced but have not as yet , as i am tired of surgeries, hospitals, PAIN, etc... i do get outside to walk a little.  well, at a snail's pace for sure and that is helpful. connecting with nature helps as well.

i retired in january, so some of you- probably those lucky enough not to have had any issues with anxiety- are wondering what i have to be anxious about. being retired is great. the work stress is gone, and that is helpful. but anxiety does not necessarily leave the minute we turn in our work badge and door keys. being a two time cancer survivor, i realize that i certainly can have a recurrence at some point. i try to live my life as fully and joyfully as i possibly can. i go for my check ups, blood work, and scans when my doctors schedule them. scan or test anxiety is difficult, but i need to be responsible about my health and do all that i possibly can to take care of myself- for my family, as well as for myself.

i would like to say that anxiety does not get the best of me. in reality, sometimes it just does. but i keep on going, doing the best that i can- and that includes wearing boots in the garden.

Saturday, June 10, 2017

" we are family, i got all my sisters with me...and we fly like birds of a feather...we're giving love in a family dose...have faith in you, and all the things that you do." we are family, by the pointer sisters

i have had the opportunity to, hopefully, help another woman who is dealing with lymphedema. i was so happy to be able to do this. why? well, when i was first  diagnosed with thyroid cancer, i started this blog- and that was seven years ago. for the first few times, i just wrote about my feelings and experiences, mainly so that  i could have an emotional outlet. i received just  a few comments, and i made  a few really good facebook friends . and while that was wonderful, i was hoping to accomplish more. as luck would have it, the author of a tremendously popular thyroid website came upon my blog. she was so nice to feature my blog in one of her posts, and all of a sudden i was getting lots of  comments from new thyroid cancer friends. we were sharing experiences and information, and it was wonderful.  i really owe this person a lot. i do not think that she will mind if i tell you her name- it is  Mary Shomon. she is the author of several new york times bestseller books, has a website devoted to thyroid issues, and has been on several talk shows. if you have a thyroid problem- cancer or something else, you really need to be familiar with this person's material. mary works tirelessly as a patient advocate, and i ( no surprise) really admire her work and her desire to help others.

fast forward to 2015. i am living " La Vida Loca ", thinking everything is just fine in my world, and then to my surprise, i get a breast cancer diagnosis. after a few days of having a pity party for myself, i do what i always do- try to come up with a plan of action. i really was not sure of what to do- sure, there is a lot of information out there on breast cancer. of course, i had a very uncommon kind, invasive lobular, so this complicated things a bit. and then something pretty amazing in my world happened. a high school friend of mine, someone that i had not seen since high school- no, i am not going to tell you how long ago that has been , contacted me. she herself is  a breast cancer survivor, and had just been down the road that i was going to have to travel. she shared her story with me, and allayed some of my fears regarding surgery, treatment,etc. she did not sugar coat the facts, though, and for that i am grateful. i am one of those people who do better when they know how it is going to be. " not knowing" is one of my worst fears.

because of all of the kindness shown to me, i am trying to "pay it forward" as the saying goes. my thyroid and breast cancer "sisters" are just that. they are family to me. we have helped each other, shared information, prayed for each other, and cheered each other on. now, i love my biological family, but to be honest, no one understands what a cancer patient is going through better than another cancer patient. it is helpful for other cancer patients  to reach out, in whatever way that  may be comfortable for them - facebook, blogging, personal messages,etc. this sharing the load, and that is really what it is, helps us all.

before my thyroid blog was "discovered", i felt somewhat adrift in an unknown universe. i did not know what lay ahead of me, or where exactly i was going. i had no idea about the treatments for thyroid cancer, what my choices were in regards to medication, or how my life was going to be changing forever. i think that it is pretty much like that for all types of cancer patients. i am thankful for those who helped me, and the friendship of others who face the same challenges as me. i would like to mention a very special friend, becky- you know who you are, who has been especially supportive and helpful. she was, and still is, always there when i need someone to talk to. i am so thankful for your friendship, although i am sorry that we had to meet under these circumstances!

so my point is this. i have a cancer family, made up of all kinds of women. we support and take care of each other. some i have met face to face, and some i have not. but all of my "sisters" are very important to me, and i love you all. i am trying to help others, like others have helped me. it makes me very happy to pass along any good information to someone who needs some help. after all, what is  family for?

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.