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.