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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

instead of writing about " what not to say to a cancer patient", i am suggesting that everyone "just say something."

after my diagnosis and treatment for my cancers, especially my breast cancer, a lot of well meaning people said some things to me that i could have taken the wrong way. i have read a number of articles on " what not to  say to a  cancer patient" on different blogs, in  magazines, and even on  facebook posts. well guess what, while i understand that a cancer patient might be upset with some of the "canned cancer comments" - wow, i just invented a new phrase. i think i will abbreviate it the triple C remark, for short. a few examples are: " you look so good! it is hard to believe that you had cancer!" this makes me worry(perhaps i am just being  paranoid) that i need a make-over. maybe i actually must look pretty sick?  or, the phrase that almost makes me cry every time, " they are only breasts!" almost as bad ( and i hate this one) " now they will be perky!

now i do not mean to complain about the well meaning triple Cs. at least, these people took the time to show concern and compassion for my illnesses. the absolute worst thing that you can say to a cancer patient is actually" nothing at all". i had some friends that, for whatever reason, did not say anything at all  to me about my illness. no " how are you doing/ feeling?" " do you need anything?" i never expected gifts or cards, although i did receive more than i deserved from some family and friends.some people called or texted me a message, which i greatly appreciated. my sister came to my house( after i had had chemotherapy treatments and was struggling with nausea/vomiting)  and sat with me some of the  nights that my husband was working late.  i am grateful to these people for their support and kindness during this horrible time.

what did bother me, were close family and friends who did not say anything at all. i know this must be a difficult situation for people who have a sick friend or family member. cancer or serious illness makes us all feel totally helpless. letting a cancer patient know that you are thinking about  them, or praying for them means more than you could ever imagine. i am not saying it is not hard.what i am saying is  that it is the right thing to do. and in the end, you are letting that cancer patient know that you care and that they are important to you. even if you tell me that thyroid cancer "is the good cancer" which is the absolute worst triple C, in my opinion, at least you will have said something to me, and i appreciate your kindness.

"when life gives you lemons, instead of champagne, don't worry little children, and don't complain, remember you're golden, so find some sugar cane. when life gives you lemons, make lemonade" the "lemonade" song, by alex boye

this song, as i have said before, could be my theme song . i have had to make lots and lots of lemonade! the news from my endocrinologist and my test results were  about as good as i could have hoped for,though. my thyroglobulin (TG) count  is under 1, thank goodness. it was elevated for about 3 years, and that is sometimes on my mind. this measures any thyroid cancer cells  that may have moved somewhere else in the body. i had to have two of my parathyroids removed, along with my thyroid, because they were cancerous also . more than one doctor has told me that having cancer move to the parathyroids from the thyroid  is very unusual. leave it to me to be different, i guess. in one of my earlier blogs, i joked and said that those two parathyroids had packed up and moved to paraguay, leaving my other two to do all of the work. perhaps my TG finally decided to go with them. i only hope the TG stays there, and does not cause any more problems.

my fatigue, at least for the most part, has probably been coming from the fact that my T3 was very low. my T4 was actually a little bit high which makes dosing a little tricky for me. my body sure does like to make things difficult for everyone. here is why i love my endocrinologist. instead of just wishing me well and sending me on my way , she decided to go more on how i was feeling than strictly the lab results. my doctor changed the type of  medicine this time, not just the dose. i have been on levoxyl, a synthetic T4 only drug, for some time now. my doctor added some synthetic T3 ( generic Cytomel ) to my regiment, but it did not help very much. before i tell you the name of the medication that i am taking now, i wanted to give you a quick review of what T3 and T4 do. and i do mean quick! a person could write an entire book about these two guys. anyway, in our healthy bodies, T4 is converted to T3. T3 drives the plane, you might say. it is the "juice" that keeps us going. T3 is about 4 times as potent as T4. if a person takes only T4, it is up the body to break it down to T3. we are all different. our bodies metabolize drugs differently due to our age, general health,etc. we could possibly have a problem on the cellular level breaking down the T4, so what then?

i have always said that synthetic T4 only drugs ( levoxyl, synthroid, generic levothyroxine, to name a few) are fine if they work for that particular patient. this worked for me for a while, but it does not work anymore. my doctor decided i needed to try a drug called "Nature-Throid". this is a naturally derived product, and contains both T4 and T3. what does  " naturally derived "mean? well, it means that the drug comes from porcine thyroid glands. it does have a light coating on the tablets to make it easier to swallow( they are smaller than an aspirin tablet), and more importantly, to reduce odor. a long time ago, i tried some "Armour" thyroid tablets, also a naturally derived product containing both T3 and T4. the Armour worked for a while, but the company reformulated it, and it stopped working for me. also, their tablets did not have the coating, and to put it bluntly, it smells very, very bad ! if anyone out there is reading this, and taking the Armour, if you will keep the medication in the refrigerator, it will reduce the smell somewhat.

so, i have only been taking the Nature-Throid for about one week. i can already tell a difference in the way that i feel- my energy level is not there yet, but it is improving every day. my moods are better- you can ask my husband how happy he is about this one! the Nature-Throid is referred to as a "hypoallergenic" drug by the manufacturer. i have a lot of allergies, thanks to all of the cancers i have had and what they have done to my immune system, so this is also important to me. i have the prescription for the synthetic T3 that i can take in the afternoon if i need it. i am going to wait just a little while for my body to adjust to the new medication before i add the" T3 only" back. a person can have too much T3 in the body, and it is not comfortable. it is a slippery slope coming up with the correct drug at the correct dose  for hypothyroid patients. i know i am preaching to the choir for anyone reading this- you guys know this already. what i would like to remind everyone is that things change, our bodies change, and our medicine - the drug that we take or the dose- may need to change,too.

for now, i am cautiously optimistic. i am feeling some better, and i think that in time, i will feel even more like my old self. or at least, as close as i can get to it. even though i like lemonade, i am a little tired of making it. i need a break!

if given the choice, nine times out of ten, i prefer to laugh instead of cry.( sometimes it is rather challenging, though.....)

today i had to go to my endocrinologist's office in Raleigh for my bi-annual blood work and ultrasound of my neck. my appointment with my doctor is not until the 27th of this month, but she insists that i have all labs done at her office. this is fine with me, since it is kind of important that the lab work is done correctly. in the past,  i have found that results do vary from lab to lab, so i have agreed to this extra trip twice a year. when i made my appointments for the blood work, ultrasound and doctor's visit six months ago, i had no idea that i would end up being some little kid's worst nightmare.

let me explain. i had the mohl's surgery two days ago. i have seven stitches on my face-covered by a large bandage-, a very black eye on one side, bruising on my face, and both of my eyes are blood red. and i am just getting started! the med tech who drew my blood today is not as talented as the one in my oncologist's office. last time i went to my endo's office, the med tech dug around in my arm for a while, then had to stick the" man veins" in my hand. today, i decided to just  cut to the chase. i asked her to please just stick my hand. and boy, did she ever! in her defense, she did get 4 large tubes of blood out of the back of my hand, but now, in addition to all of the " face stuff" i  had a large bandage on one of my hands.

after the blood letting experience, i staggered out to the elevator to make my way down to the parking garage. several people file into the elevator with me, including this very sweet looking little boy. he is about 4 or 5. the doors close, the little guy sees me, and his jaw drops. i am sure had there been any flies in the elevator, he would have been spitting most of them out. at this point, his mother and another lady are looking a little worried. so, i said to the little boy: " don't worry, sweetie. i am just getting ready for Halloween!". he laughs, a few others do as well, and i could just feel the tension leave the elevator. it seemed like everyone had been holding their breath and could now, at this point, get some air. as we were exiting the elevator, one of the ladies stopped me and said : " it is nice that you have a sense of humor. i am sure that it is helpful," she was right.

having a sense of humor is beneficial to me, as well as to  others. it is hard to laugh sometimes, though. but as i said, if i can laugh at myself, or my situation, it is better than crying. my face will heal (eventually). my stitches are to be removed on monday. my black eye will also get better in time. i will not get my results for my thyroid cancer tests until a couple more weeks. until then, i am hoping that some sweet little boy i met today in the elevator does not have to sleep with his bedroom light on tonight!

" I'm taking a walk, i'm going outside, i'm taking a walk, i'm just getting by....i'm watching the birds, i'm just getting by, ....i'm taking a walk, i don't need a ride. " " taking a walk " by John Prine

john prine performed this song at his birthday concert in nashville last week. my husband and i were fortunate to see him again- i am not sure how many times that we have seen his concerts, but they have all been great. he gives the audience 100%, and i am not sure how he does it. he is a two time cancer survivor, like me.

i am having a tough time with fatigue right now. i can make it through the day only if i do not have anything extra to do. like the concert, for example. the drive to nashville took us about 8 hours ( we stopped for a picnic lunch,etc,). when we finally got to our room, i was exhausted. my husband wanted to go out to hear some local bands play, but i simply did not have the energy. i felt unplugged. the fatigue that i am feeling is similar to the fatigue that i felt before my cancers were diagnosed. i am hoping that it is my TSH ( a thyroid function marker) that is high, and by upping the dose of my thyroid medication, it will make me feel better. i have to wait until my blood work appointment, though. my endocrinologist can not make any adjustments without first looking at the numbers, you might say.

my mohls surgery for the basal cell carcinoma on my face is this coming monday. my thyroid cancer blood work appointment is in Raleigh, two days later. i am also scheduled for an ultrasound that same day. my appointment with my endocrinologist, to go over the results of my tests, is scheduled for October 27th. i am hoping that when she sees my lab values, she will go ahead and increase my thyroid medication dose and i will not have to wait until the 27th. that is presuming of course, that the fatigue is a result of my TSH being too high. having a high TSH not only causes fatigue, but it can allow any rogue thyroid cancer cells that might be hiding somewhere  to "wake up" and cause mayhem somewhere else in my body. my TSH has been suppressed( near zero) for the past 6 years so that those rogue cancer cells would stay asleep. but just recently, my endocrinologist lowered the dose of my thyroid medication. that has made me very nervous for several reasons.with thyroid cancer, a patient is never truly in remission. you have to be tested for the rest of your life- there is no "five year you are o.k." mark. i know of patients who have had a recurrence seven, even 15 or 20 years after a first diagnosis. not the good cancer, is it?

of course, fatigue is a common side effect with the medicine that  i am taking to block estrogen production ( anastrozole). and fatigue is a common side effect even YEARS after patients have had chemotherapy treatments. it is sort of a guess as to  which one of these factors may be causing the fatigue. maybe it is even a combination of a few of them. at any rate, i need to start feeling better. to quote john prine again, most of the time i am feeling like " a bowl of oatmeal tried to stare me down, and won." i am very  fortunate in  that my employer and co-workers are fine with me only working a couple of days a month. after working a 9 hour shift, though, it takes me at least two days to recover. it is amazing to me how an individual can rise to the occasion. i think about those elderly  actors who creep along backstage, barely making it, then when they get on stage and the spotlight hits them, BOOM! it sort of feels like that to me. like today, i can not imagine having enough energy to get through a day at work. but when my next work day comes up, i will push myself and somehow muddle through.

i am not sure if i am even up to taking a walk today. i am surely just getting by, as john says in his song. i know that exercise helps, but at this point i really have to push myself to get out there. i do enjoy looking at the birds,though.

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

you could also say that this is an addendum blog. i posted in haste last time. the new drug that i was so excited about, aromasin( exemestane) 25mg , turns out not to be so great after all. i was so hoping to have less muscle/bone pain with it- my oncologist assured me that 50% of women who were having the muscle/bone pain with the arimidex( anastrazole) did not have that side effect with the aromasin. i should have fully researched the drug before getting all worked up about it. turns out that the side effects profile ( i researched a  professional drug information site) on the aromasin is worse than the side effects profile of  the anastrazole.

even though my oncologist told me about the 50%  prize, he must have read about it in some professional journal?, it still lists bone/muscle pain as a side effect. that was acceptable. but what was NOT acceptable were two side effects listed as "very common".the  article that i read  listed side effects into three groups: very common, common, and rare. the two "very common" side effects with the aromasin, which were NOT listed in the anastrozole profile, were leucopenia ( which means diminished white blood cells, which means your immune system is compromised) and depression with  insomnia. these are deal breakers for me! when i was having my chemotherapy, my white blood cells tanked every time, causing me to have to have extra neupogen injections. my immune system is not back to my "normal" as yet, so i am concerned about any drug that would adversely affect it.

so back to the "devil i know" as they say. taking an aromatase inhibitor ( a drug that decreases the estrogen in the body) is  crucial to preventing a breast cancer recurrence. in my case, i will just stay on the anastrozole, and hope that either i find better ways of coping with the pain, or i am one of the lucky ones who ( for some reason) stops having this side effect.

" go back, he thought. no good at all! go sideways? impossible! go forward? only thing to do. on we go! so up he got, and trotted along with his little sword held in front of him, and his heart all of a pitter and patter." quote from the Hobbit, by j.r.r. tolkien

this is my second favorite quote from the hobbit. i needed to muster up all of my courage yesterday to go to my six months appointment to check on my breast cancer. it was an appointment with the oncologist- and they did blood work, and went over the results from  my CAT scan that i had  a few months ago. i thought that i was not nervous until the night before my appointment. it hit me like a ton of bricks. what if the cancer is back? is that why i have a basal cell carcinoma that i have to get taken off next month? i just finished a 10 day treatment of antibiotics for a sinus/throat infection. is my immune system shot? ( really, i feel that i have the immune system of an ant. a very, very small ant). i seem to catch everything coming and going as they say.

i am not afraid of needles. i am not fond of them, either. unlucky for me, i am a " hard stick" as the med techs lovingly refer to people like me. my veins head south- i mean, who can blame them? i did do what my favorite med tech told me to do last time- drink lots and lots of water 24 hours or so before you have to have blood drawn. that " plumps up the veins" so she said. honestly, it seems to work. and yes, i do have a favorite med tech in my oncologists office. she uses a butterfly needle, sounds sweet, but still hurts. not nearly as much as a regular needle though . and this med tech seems to know where my veins are hiding out. she gets one every time! i asked her if she could come down to raleigh with me next month when i have my big thyroid cancer check up. the med techs at my endocrinologists office seem to always dig around in my arm for a while, never strike gold there, and then i end up having to have one of the " man veins" in the back of one of my hands stuck. hand sticks really hurt, by the way. i have such good veins there because of all of the child proof lids i have opened over the years. i have decided that this time, i will just tell the med tech to stick my hand and get it over with.

back to my breast cancer check up. at my oncologists office, it is such a big practice, that you always see a physician's assistant first, then the oncologist comes in the room for the big finish. so, the PA and i went over the basics- and i told her i was doing pretty well except for the medicine that i have to take for TEN YEARS . it blocks estrogen, but one very bad side effect is muscle and bone pain. i am especially sore in the morning, and i look like i am 100 years old when i try to get out of bed. this is a medication that i have to take. period. but, there is another medication in this same category ( they are called aromatase inhibitors for those of you who are interested). my doctor said that about 50% of the women who had bone/joint pain on the anastrozole ( arimidex) did not have this side effect on the other drug, which is called aromasin( exemestane). i am going to research this as much as i can from reputable breast cancer websites, and my research material . but honestly, i have pretty much decided to give it a try. unless i discover some horrible side effect from the new drug. and it is going to have to be something pretty horrible for me not to try it!

my oncologist ordered a CAT scan a few months back. i had quite the scare at first when the radiologist read the x-ray and mentioned that i had a tumor on my liver. the radiologist wanted me to have an MRI to check it out further. i called up my family doctor and talked with him about it. i have mentioned him before- he is the voice of reason. he reminded me that i have had this place, and it is called a hemangioma- just a fancy word for a cluster of blood vessels, for years. it is benign, and can be on the outside of the body, as well as inside your body.  my family doctor suggested that i get copies of my other CAT scans and take these to the radiologist so that he could have something to compare the latest picture to. that worked! i did not have to have an MRI.

my oncologist did not know all of this back story, though. he said, well, your CAT scan shows a spot on your liver. i could just see the wheels turning in his head. i imagined that he was thinking something like this: " cancer patient + tumor on liver = cancer??!"  he looked pretty relieved when i filled him in. in fact, he looked at me, smiled, and said : Good Job!! i have to give my family doctor some credit, though. sometimes it is good to take a step back, and breathe before making a huge decision. one should not wait too long, but rushing to have a test done  that would only give me more radiation exposure when i probably already glow in the dark ( in large part to the I-131 dose i received with my thyroid cancer treatment) would not have been in my best interests. this is another example of  being a good patient advocate for yourself.

my oncologists office will mail my blood work results, the ones they were not able to do in the office, to me in a few days. unless something weird pops up in these, i am good to go for another six months. now, i will just dust myself and my trusty sword off and get ready for my thyroid cancer check up next month. going forward is the only way to go.

"don't worry, 'bout a thing. cause every little thing, gonna be all right." by Bob Marley

i saw the special "mohs surgery trained dermatologist" yesterday. thankfully, he is willing to do the surgery in the office. sometimes, if the cancer is larger, in a tricky place, etc, they will send you to the plastic surgery center at Baptist hospital in winston -salem. i was afraid they might want to do that. the lesion is on my face is  between my nose and eye, a little closer to my eye. but the dermatologist seemed confident that he could do it without any problems. he told me that i would be in the office for a few hours, due to the process, and that i would have stitches and most likely a black eye. my surgery is scheduled for monday, october 10th. just in time for halloween! actually, i am hoping that i will have had my stitches removed before halloween- i forgot to ask. the scar takes a little while to heal up, so i guess i can dress up as the bride of  Frankenstein again this year.

i was a little more "concerned" yesterday at the dermatologist than i thought  i would be. it was just a consultation, so i went by myself. this is a basal cell carcinoma, not a melanoma, or even a squamous cell for goodness sake. basal cell can spread to tissue and bone, but only if you let it go for a long time. my carcinoma is a relatively new kid on the block. but it is STILL CANCER! i am tired of my adventures with cancer over the past six years, and i told the dermatologist that this is it for me. thyroid cancer in 2010, squamous cell on my leg in 2012, breast cancer in 2015, now basal cell on my face  this year. enough already. the doctor gave me a little pamphlet on basal cell carcinoma. here is a list of the factors that increase a person's risk of basal cell carcinoma:

1) pale, light colored or freckled skin.  CHECK

2) blond or red hair.  CHECK

3) blue, green, or gray eyes. CHECK

4) a family history of skin cancer. CHECK

5) a weakened immune system . another  CHECK

6) using tanning beds or other indoor tanning services. NOPE, not this one.

but with 5 out of 6 risk factors for developing basal cell skin cancer, i guess it was kind of inevitable.

now what? well, as i said, i told my body " no more cancer!". and of course, i will see my dermatologist now every six months just to be sure that nothing sneaks up on me, so to speak. the thing to remember, as i said before, it early detection and treatment. if you are afraid to go to the doctor, please remember that skin cancer has to be treated in some way, and better when it is smaller and contained, versus later on when it has gotten larger and more aggressive.

per my usual way of coping, i will freak out for a couple of days, then i will be fine. i have a plan, and i know that "everything is going to be all right." i have a lot of support from my family and friends and i am very thankful for that. and as a bonus, i have the perfect outfit for halloween this year.

" here i am, back on the road again. here i am,up on the stage....there i go, turn the page..." lyrics from "turn the page" by bob seger

yesterday was my birthday. i received a lot of birthday wishes on facebook from my family and friends. i feel very, very blessed to be here for another birthday and i am grateful for that. i spent this past weekend with all of my children and grandchildren. we had a great time panning for gem stones, watching the grandchildren frolic around  in the splash pools and doing their favorite thing- throwing rocks in the river. yesterday, i also received a few happy birthday phone calls which was nice. i did however receive a phone call that was not so nice. it was from my dermatologist. it seems that the place on my face  that i had removed about 10 days ago,  was indeed cancer. they scheduled an appointment for me  with the dermatologist in the practice( different doctor than mine )  who sometimes will take care of skin cancers. i am to see him on  september 7th. the nurse said that the second physician  needed to see it to evaluate if he could remove it, or would need to send me to a special dermatologist who is also a plastic surgeon. i  have heard that if i have to be referred to another plastic surgeon dermatologist, it would be one who works at baptist hospital, in winston-salem. i am just praying that the local dermatologist can do it.

the good news is that the cancer type is basal cell, which is the most common skin cancer. i was a little worried that it was squamous cell carcinoma- since i had one of those removed from my leg about four years ago. squamous cell is a more aggressive cancer, and can sometimes require extensive surgery and radiation. basal cell can rarely involve muscles, nerves or bones, but it is not likely to spread. if a person has had one skin cancer, they are likely to have another one. please remember this bit of information! in other words, check out any suspicious places on your skin. i really recommend that everyone  have a skin check, even if you have never had skin cancer, once a year or so.

so what causes skin cancer? exposure to UV light is a biggie. either by the sunlight or tanning beds. most of us did not wear sunscreen when we were younger. that damage can not be un-done. for the past several years, i have worn sunscreen, a hat when outdoors, and i try not to go outside during the hot part of the day ( about 12 to 4pm). another possible cause is a weakened immune system. BINGO! i think that is my problem. there is not very much a person can do about that except be diligent in checking your skin, and going to the dermatologist as early as possible if you notice anything strange.

my basal cell is between my nose and eye. a tender little area, with not much skin to work with. the type of surgery generally used to remove this is called the "Mohs" procedure. the doctor sort of scraps a little, stops and sends you out to the waiting area, checks for clear margins, and scrapes again as needed before stitching you up. this can take a while, as you might imagine, but it is a very effective procedure from what i have read.

i know that basal cell carcinoma is not as serious as squamous cell or especially melanoma. having this type of skin cancer is not nearly as bad as having thyroid cancer or breast cancer. it may be sort of a side effect ( weakened immune system) though, from having had  one or both. everyone is different, but what i noticed about my basal cell was a crusty little patch- sometimes red, sometimes oozing, that would sometimes be worse than other times. it would appear to go away, but then come back. i am not trying to gross anyone out, but i just would like for people to be aware of any skin changes, and to  please take these seriously!

so here i go, back on the road again, so to speak. as i said, basal cell carcinoma  pales compared to thyroid or breast cancer, but it is cancer, and it is troubling and aggravating. i will do what i need to do to take care of this, and i will move on. if i end up with a little scar on my face, i will just use the cliche, " you should have seen the other guy!".

" yeah, the W A I T I N G is the hardest part". yes i have used this line a time or two in my blogs . thank you, tom petty.

actually, make this the third time. i had a dermatology appointment last week- to have my yearly check up. i knew that i would have to have some places ( actinic keratosis) frozen off. if left untreated, they can turn into squamous cell carcinomas. i had a squamous cell carcinoma removed from my left leg- a year after my thyroid cancer was diagnosed. i was a little nervous going to the dermatologist this time- after all , it has been a year since my breast cancer diagnosis.

call it fate, call it chance, call it darn bad luck, but guess what? i have a squamous cell carcinoma on my face. the dermatologist is pretty sure that it is squamous cell again, but we are waiting on the results from the biopsy. yes, W A I T I N G. my dermatologist removed the" place", but he said that if the biopsy does indeed confirm the squamous cell, i have to go back to see the special plastic surgeon dermatologist in the practice. the plastic surgeon  does a procedure where he cuts a little, sends you in the waiting room, looks for clear margins, maybe cuts a little more, etc. then sews you up.  my doctor said that it would take anywhere from 8 to 10 days to get the initial biopsy results back. i know this is not thyroid cancer. i know this is not breast cancer, but waiting for biopsy results is getting to be something that i am tired of doing !

i wear sunscreen, i wear hats, but this damage occurred when i was younger, and not as cautious about sun exposure. it is also in that tender place between your eye and nose. i am wondering, since i know two other people who have had a squamous cell removed from the exact same location, if there is something we are doing wrong. i have thought  perhaps , when we apply sunscreen, we do not apply enough ( or any) to this area because we are afraid of getting some in our eye(s)? it does burn if you get it in your eye, by the way.

as luck would also have it, i had to work this past saturday. i had prepared my fellow peeps about my appearance. i have several red areas on my face, as well as the ubiquitous "spot" band aid that dermatologists seem to be so fond of. no way to prepare the customers, though. i wore my biggest frame reading glasses, but even that did not seem to help. as i said in a facebook post last week, i just told my customers that i got into a fight with my dermatologist and he won.

besides wearing sun screen and hats, we should all be diligent about our skin. i think almost everyone should have a skin check once a year. and of course, if you see something that looks different, appears suddenly, has an irregular shape or color , go see the dermatologist right away. if you have had any kind of cancer, your immune system is weakened. this is especially true if you have had to undergo chemotherapy, radiation, or the RAI-131 treatment.

i will of course report back as to what i found out. until then, we will all be waiting.........

" oh, Lord, don't keep me up all night, side by side with the moon. with its desolate eyes miles from the sunrise, the darkness inviting a tune, the insomniac's lullaby" from paul simon's Insomniac's Lullaby

i had my second to last, probably, physical therapy session this week. unfortunately my insurance company only allows so many visits per year. i wonder when health care in this country will focus more on what keeps us healthy, instead of mainly just treating our illnesses? physical therapy has been one of the best things that i have done for myself- as far as taking care of myself. my physicians did not suggest it, but i asked for treatment, and i did get an order written for the physical therapy.

this week, my physical therapist  measured my " lympedema arm" as i call it, and compared the measurements to what they were before i had the lymphatic massage. all of the measurements were better than before, and by that i mean my arm is now somewhat smaller. most of the measurements were just a little better, but one was a whole centimeter smaller. and maybe it is just me, but i feel better. the swelling was also in my side, chest and back. the physical therapist did not measure this, but she said that she could tell ( and i can,too) that the swelling has gone down quite a bit from these areas. lymphedema is a chronic condition, and can not be cured. but it can be managed, and a person can feel better when receiving the right care. of course, i have to do my part,too. i have to wear my compression sleeve and do my massage at home. infection ( cellulitis) can be a serious complication, so i have to be careful not to injure myself- that is a little tough because i am on the clumsy side. also, any infections that i get- such as sinus infections,etc. need to be addressed as soon as possible. i used to think that this was due just to the chemotherapy, and what it did to my immune system. this is partly the case, but that old lymphatic highway is congested now, so that is the other part.


this is just an example of being your own best patient advocate. knowing your body, and what is best for you. recently,  i had a conversation with a friend of mine who is also recovering from breast cancer. she said that she is regretting a major decision that she  made  regarding her treatment. it was a tough call- her doctors could not agree on a particular part of her treatment. in the end, she just had to make the call and go with it. after the procedures were over, two other doctors came out and said that she should not have made the decision that she did. it has not been a good outcome for her, so now what? well, sometimes you just have to make a decision, run with it, and not look back. i told her that all we can do is research the problem, get several opinions, and choose what we think would be the best treatment for us.

i will use this as an example. when i got my RAI- 131 treatment for thyroid cancer, i got a monster dose. that was what the radiologist ordered, and because my thyroid cancer had spread to my lymphatic system, and a couple of the tumors had broken open, i went with his recommendation. now, six years later, the effective dose has been proven to be much lower than the dose that i received. there are some people, though there is no firm research on this, who claim that the RAI-131 may have some link with breast cancer.  i do not know exactly what caused my breast cancer, five years after having thyroid cancer. i do know that they are somehow related, but this theory has not yet been proven. do i regret the decision that i made six years ago about having the large dose of the I-131? good question. i used the information that was available to me at the time, made my decision, and ran with it. hind sight is always 20/20.  the radiologist made the call on what he thought was best for me, and at the time, i agreed with that decision.

my friend that i was talking to told me that she has to let her" bad treatment decision " go and move forward. that is all that any of us can do, ultimately. just make our best decision, go with it, and move forward. this is easier said than done, though. as far as my decision about the I-131 goes, i might just give you a different answer about that monster dose- depending on when you ask me about it.

"Take a load off Anny, take a load for free. Take a load off Anny, and, and, and.... you put the load right on me." lyrics from "the weight" by the band

something amazing has happened! i actually put my tai chi dvd in my laptop and did the workout. if you have read some of my previous blogs, you will know that my tai chi dvd and i were having a staring contest( the dvd had been winning up to now). this is a beginners tai chi dvd. on the cover of the dvd,  it says that it is for "older adults and the physically challenged!". not sure why they used an exclamation point after that description, but i unfortunately fall into both categories. on the dvd, there is an instructor, and a student helper. the student helper's name is claire. claire is a very pleasant older adult. she knows all of the moves, moves gracefully, and does not break a sweat. claire has about 20 years on me. unlike claire, i do not know the moves, am not graceful, and actually sweated pretty profusely. the instructor kept saying that "claire is a dancer". all i know is that claire kicked my butt.

that said, i think that i will continue with the tai chi. i would rather attend a live class( claire does not talk very much on  my dvd). i found that with zumba, after doing the  dvd a few times ,just the dvd  is boring. a live class is  much more fun. in a live class, the routines change from class to class, and there is just something more inspiring about being in a live class. my physical therapist told me today, that even  not considering my bad knee, it would take me  approximately a year to get back to where i was physically able to attend a whole zumba class. sad face here. of course, i know that i would have to get my knee replaced before i could go back. anyone need a pair of zumba shoes and several belly scarves?

here are the pros that i have discovered with tai chi:

1. it can be a gentle, strengthening exercise.

2. it focuses on deep and complete breathing.

3. it improves balance, thus limiting the possibility of falls.

4. it can be calming and relaxing.

5. there is basically no special equipment required ( although comfortable yoga type pants and a tee shirt are useful).

6. it helps with flexibility

7. it is supposed to increase energy levels.

there are only a few cons:( as i see it)


1. it is not zumba

2. currently, there are no live classes being taught in my area.

 joking aside, i think that this is pretty much the perfect exercise for me now- at this point in my recovery from cancer. i really enjoy walking, which i do as often as possible, but the tai chi is a good addition to my walking. and since tai chi is supposed to help with balance and preventing falls, this might actually help when i am walking. i will let you use your imagination on this point.

i am currently still going to physical therapy for lymphatic massage. "the weight" is literal in my case. i still have a lot of swelling in my chest, side, back and arm, but my physical therapist is making quite a bit  of progress. she said that not all people respond to the massage, but that obviously i am. my husband went with me to one of my sessions, and my physical therapist taught him how to do the massage at home. it is so kind of him to do this for me, and it is helping as well. i have found that working ( 9 hours on my feet) makes the lymphedema worse. not too much that i can do about that at this point, except for limiting work as much as is possible for me and my work schedule.

as i understand it, lymphedema is a chronic condition that can be managed, but not completely cured. i still wear my compression sleeve, especially when i am working. early diagnosis and treatment are the keys here. i strongly advise anyone who thinks that they may have lymphedema, to consult with a physical therapist who is trained to treat lymphedema patients. getting physical therapy for this has been one of the most positive things that i have done for myself . again, please be  your own best patient advocate, and do what you can to make things better for yourself.

so, i am planning on continuing my tai chi dvd, and  giving claire a run for her money. i would not place any bets on me as yet. after all, claire is a dancer.....

"you took my joy, i want it back! you took my joy, i want it back." by lucinda williams

that is pretty much the way that i am feeling right now. and have felt, really, since i lost my butterfly. and of course, since i lost my breasts. i took this picture for " the Truth about thyroid cancer". as i recall, those of us who have had  thyroid cancer have about a 30% chance of having another primary cancer. the percentage may be more or less than 30%- i have seen it all over the place, but 30% seems about right to me. i had a skin cancer removed from my leg ( squamous cell) about a year after having thyroid cancer. i did not make a big deal about my skin cancer - all i had to have done was just the surgical removal of the cancerous growth. no chemotherapy this time, but i did have to change my dermatology appointments from once yearly to twice a year. hind sight is always 20/20 as they say, but that should have gotten my attention. would i have done anything differently? perhaps. i was on a very low dose estrogen/progesterone regiment for menopausal symptoms. while i do not believe, after a lot of research on my part, that the hormonal therapy alone caused  my breast cancer, i think that the tendency to have another primary cancer, and the fact that hormonal therapy has been proven to speed things along if you have a predisposition to breast cancer, would most likely have caused me to stop the hormones.

at the end of next month, it will be a year since my last round of chemotherapy. honestly,  it has been a hard couple of years for me. going through the chemotherapy, mastectomy surgery, reconstruction surgery and having to take  the anti-estrogen drug that i will be on for the next  ten years have taken quite a bit out of me. i often wonder how much harder this has been since i also had the  thyroid cancer. some of the symptoms that i have had from the chemotherapy are symptoms that a patient with thyroid cancer has. you could say that it has been a double whammy for me!

after my treatment for breast cancer stopped, except for taking  the anti-estrogen drug of course, i was at a loss of what to do. holistic care was not offered in my small town. deciding that i needed some physical therapy for the lymphedema in my left arm, and getting one of my doctors to write an order for this, was one of the best decisions concerning my health care  that i have made. i have received valuable advice from my physical therapist. not only has she helped me with the lymphedema, but she has been working on my neck issues that most likely occurred after  my thyroid cancer surgery. we tend to forget that our body parts work together. losing the eleven lymph nodes in my neck certainly added on to the problems of losing the three in my left arm area. ( i will not bore you with the" highway analogy" again- although it is a very good one!)

an acquaintance  of mine recently passed away from cancer .when this happens, it  always makes me pause and take note of my life. am i doing all that i can to get healthy? do i have a good quality of life? am i doing what i want to be doing with what is left of my life? in other words, am i getting my joy back? so far the reviews are mixed. i am trying hard to get healthy, but more needs to be done. i am not sure how to get all of my joy back, but i am working on that,too. i am so fortunate to have wonderful family and friends who offer support, care and unconditional love.

the take away from this blog, i hope, is that others reading this will seriously consider what they need to do to be healthier and happier. do not wait for others to do it for you. do not expect your doctors to have all of the answers. get advice from all kinds of health care providers- doctors, physical therapists, even pharmacists, and make your best decisions on what is best for your good health care. i wish you luck, i wish you good health,  but most of all, i wish you JOY.  by the way, it is so nice to have hair again! ;)

" i can't talk now, i'm in a parade; can't talk right now, i'm in a parade....... diagnosis: thyroid and breast cancer; prognosis: guarded; occupation: pharmacist. " lyrics ( changed a little) from a new song by paul simon, called " in a parade"

when i am at work, especially, i feel exactly like i am in a parade. my thyroid medication is still off, so add that to chemo brain , the lymphedema, and the other things that breast cancer brings with it and i feel like it takes every bit of energy that i have to march on down the road. i can do it, and i would never put anyone in danger, but it takes a lot out of me. i also have to remember the sad fact that i am not in my twenties anymore. i feel like i should be able to do everything that i was doing before my cancer diagnoses and not feel tired. even a family gathering, or a long day out shopping, wears me out. FATIGUE is one of my worst enemies. i had major fatigue before both cancers were diagnosed, so it is troubling to have it going on now.

some people think that after your thyroid is  removed, you take a tablet and voila! you are good to go. as the majority of people reading this blog know, that is simply not the case. in april,  my thyroid levels were too high, so my doctor had to go down on my dose. but now, i think they are a little too low- i tend to crash, or feel like it, in the late afternoon. if you want an intelligent conversation with me, it would be best to call me before about three or four in the afternoon. after that, i will be in a parade. too much talking, lights, noise of any kind, to name a few things,  simply wear  me out. i feel like my eyes glass over. you are probably wondering if you should perhaps get your prescriptions filled in the morning when i am working? like i said, i push through the fatigue, but it does cost me. i pay the fare usually the next day- i am pretty much toast and just rest, usually. and if it makes you feel any better, i do not work two days in a row. i always have at least one day between work days.

 believe it or not, i am not complaining. i do not work a whole lot- only about 4 or so days a month. but i would like to feel better on a daily basis. and i am getting there, but it is slow going. if i could recommend one, well two actually, things to patients post thyroid cancer and/or breast cancer surgery, it would be physical therapy and therapeutic massage. i did not get any after my thyroid cancer, and i am dealing with those problems now. i had eleven lymph nodes removed from my neck, as well as my entire thyroid and two parathyroids. i did not know about the "lane merging theory" until my physical therapist explained it to me when i started physical therapy last month. i had three more lymph nodes removed with my breast cancer. i have lymphedema in one arm, but also swelling in my side, back and neck area. the problems with my neck occurred  after my thyroid cancer surgery. it would have helped me tremendously if i had gone to PT then. the therapeutic massage has been great as well. i think those two therapies go hand in hand, pun intended.

i have incorporated  a lot of holistic, you might call them, techniques to try to regain some of my strength and feel better. mild exercise, physical therapy and massage, vitamins, trying to get more hours of sleep each night, having a better diet, etc.  i can not return to zumba, which i had previously done for 5 years. this is partly due to my lack of energy, but also i was supposed to have one of my knees replaced a week before my breast cancer surgery. boobs trumped knee, and i will have to wait a while for my knee to be fixed. besides walking, i think that tai chi would be a good, gentle exercise for me. unfortunately, there are no classes at the wellness center near me. i have purchased a DVD on basic tai chi ( for old people and the physically challenged- i  fall into both categories, i am afraid). so far, all i have done is take the wrapper off the DVD. it is propped in front of my DVD player, and so far, all that we do is  just stare at each other. i am hoping to pop it in the DVD player one day soon.

everything i have said in this blog harks back to being your own best  patient advocate. if you are not feeling well, find out what other things might benefit you. do not rely just on that one thyroid hormone pill. no matter how good the medication, it can never replace a healthy thyroid. adding other, holistic methods is an important  key to feeling as good as you can, i think. even with all of this, though, i still have times, every day, when i can not cope as well as i did before thyroid and breast cancer. i suppose it is like that for almost everyone who is dealing with these problems. parade, anyone?