" 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.

" 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.  

" 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.