"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?

Today is my six year "cancerversary" with thyroid cancer........some things i have learned.

i almost forgot what today is. i always worry when my six months checkups for thyroid cancer roll around, but i sometimes forget my "cancerversary". i wish i could say that they have been six good years- but with my one year "cancerversary" from breast cancer coming up in just three days, that  is not exactly true. i still think, as now some others do, that the two cancers are somehow  related. looking back, i guess it was inevitable that i would have breast cancer,too, but i might have done one thing different- stopped my hormone replacement therapy earlier. yes, it made me feel good- it stops the night sweats, makes your skin more elastic, improves mood( my husband liked this one), helps protect you from colon cancer( this one runs in my family), and also is helpful  in preventing osteoporosis. my sister, who has never taken estrogen/progesterone therapy, has osteoporosis. i do not have osteoporosis. in fact, my endocrinologist says that my bone density tests have actually improved some over the past few years. of course, my sister does not have breast cancer, thank goodness. this is a case of weighing the risks versus the benefits of prescription medicine. i always tell my patients that they should always  weigh the benefits versus the risks of any medication. talk to your doctor, weigh your options, but i suppose it comes down to luck in the end.

my husband did not forget what today is! he picked a beautiful bouquet of flowers from our flower garden for me. he planted a lot of what we have growing in our garden  now, six years ago. he wanted to give me a "healing garden" to enjoy while i was recovering from thyroid cancer. little did he know that i would need the beauty and serenity of those flowers last year,too.

i have learned a lot of things over the past six years. i have seen things from the patient's point of view. i am used to being in control at work- i like to jokingly call it "flying the plane". it was not easy for me to understand and accept the fact that i was no longer in control of things. other people were taking care of me, which was sometimes hard to accept. i have said in the past that my daddy raised me to take care of myself and others. while that is true, it is also my personality to feel like i have to be in control of everything. at times, that has gotten me into trouble. i am better about accepting help from others, but far from perfect at doing so. i am a work in progress, as the saying goes.

i have learned to appreciate every day and the beauty in the world around me. my husband and i live out in the country. way, way out in the country! we do have some neighbors, but some of our closest neighbors are deer, bear, and other wildlife. i think that the peace and quiet of this environment has really helped me to begin to recover from my cancers. i have made some major life decisions lately, and am excited to begin the new chapter in my life. one important thing that i have learned is not to take life for granted. make the most of your life, appreciate every good thing, be grateful and actively seek out joy. there you have it- some important things that i have learned.

i would like to thank everyone who has read or hopefully still reads my blog(s). i appreciate your kind comments and your support more than you could know.

the results blog.....

not a very original title for a blog, but here goes! i saw my endocrinologist yesterday afternoon and got my six month test results. i was hoping that she would let me go to once yearly testing , but she is not ready to do that yet. as i have said before, i had an aggressive type of thyroid cancer, and the beasties in my neck are prone to return when you least expect it. i asked my doctor one time if, like some other cancers, thyroid cancer had a five year "expiration" date . she said unfortunately no, i will have to be tested for the rest of my life . my doctor had one patient who had a recurrence after seven years. when people say that thyroid cancer is the" good "cancer, they forget the forever testing and the fact that patients have to take a thyroid replacement hormone for the rest of their lives. it is hard to determine a good dose of thyroid replacement hormone - one that will not make the patient feel terrible, yet one that will be effective. i thought that my dose might be too low, but i was mistaken.

my labs were good- no measurable thyroglobulin. that is the one test  that all thyroid cancer patients hold their breaths on. my thyroglobulin levels were measurable and i had antibodies (also bad) for about three years. then one day..... poof, they were gone. did it take the RAI treatment that long to work? did my immune system finally tell those sarah palin, aka rogue thyroid cancer cells, to pack their bags and leave? who knows, but that certainly was a day to celebrate!

as i said earlier, my TSH and T4 levels indicated that my thyroid replacement dose needed to be reduced, not increased. i have been struggling with fatigue lately, so i was sort of hoping that i just needed an adjustment up  in my dose to feel better. my doctor and i  negotiated a deal- one of the many reasons i love her- and i am to take a half tablet once a week. this  does not sound like much, but it may be enough to get my TSH up and my T4 down  enough to satisfy everyone. one of the many troublesome things about having  an extremely  low  TSH, with the resulting high T4  can do is to precipitate osteoporosis. this is especially important  since i am on an estrogen blocking medication that can also increase the risk of osteoporosis. my next testing is in october so hopefully things will settle out enough  to please everyone.

my bone density test actually  showed improvement  since last time. my doctor was flummoxed as to why this was. she kept staring at my results. my doctor's expression sort of reminded me of  how i look when i am searching for something at the grocery store, and they are out. i just keep staring for a few minutes as if that will cause the product to magically appear. my doctor thinks that maybe i have not been taking the arimidex long enough for the drug to negatively affect my bone density. i think that the fact that i take a pretty large prescription dose of vitamin D ,and have  increased my dairy food  consumption( calcium  in foods is  better absorbed by the body as compared to supplements , and less likely to cause kidney stones), has been helpful.  i  have also added more exercise to my routine. i believe that the combination of these things might explain the improvement.

so one cancer out of the way for a while! if i can get through my CAT scan next month, i should be worry free( i hope) until october. then we begin again.

you know that feeling you had in school when you had an important test coming up and you felt that had not studied enough???.........

this week and next are test weeks for me. i only had one thyroid cancer testing session last year, due to the whole breast cancer issue. for the past five years, i have endured twice yearly testing- ultrasounds, blood work, and new this year, bone density tests. i get about as nervous as a caged tiger at the zoo when these tests are coming up. you might think that after five years i would be a pro, and it would not bother me. i was slowly getting there, but the fact that i had breast cancer a few months ago sort of set me back, you might say.

it would be nice if i could find some way to deal with this "scan anxiety" as i have heard it referred to. one good thing about my thyroid cancer  testing is that i get to visit my daughter and her family who happen to live four hours away. my endocrinologist's office is in the same city , so it is a kind of reward for me. i try to focus on the joy of seeing my daughter, grandson, and son in law. that does help a lot, but the bottom line is, when it comes to test day, it is me alone in that room. well, the ultrasound technician is there- looking for goblins in my neck. but of course she is just doing her job.

as i mentioned, the bone density test is new this year. i have had two in the past- five years apart- due to the fact that thyroid medication can cause osteoporosis. so far this year, i have had two bone density tests. the estrogen blocking medication that i take to hopefully prevent a breast cancer recurrence  also causes osteoporosis. i take a prescription dose of vitamin d to hopefully help my bones. i can not take calcium because i  had a  kidney stone last year which was probably, at least partly, caused by the calcium supplement that i was taking. calcium from dairy foods and a few other sources  are best- they are absorbed better by the body. i try to include enough of them in my diet, but not too much. my cholesterol has been good so far, but dairy foods can certainly affect your cholesterol.

another thing that helps prevent osteoporosis, is weight bearing exercise. i am walking now, fairly often, and i have re-joined a wellness center. i am hoping that adding some more exercise will help,too. no, i have not been able to return to zumba yet! i will probably have to have my knee fixed before i can go back to zumba classes. but  i am tired of doctors, no offense, and surgery at the present time, so shaking my booty, as i loved doing, will just have to wait a while longer. i did buy a tai chi DVD. so far, the DVD and i have just had a staring contest( it is sitting near my TV). to paraphrase a john prine song, " the DVD tried to stare me down, and won"- for now that is!

so i have the big reveal show with my endocrinologist next week. i get another chance to visit with my daughter and her family. that is the good news. i hope there will be more good news when i get my test results from my doctor. i feel like i should have done more, somehow. test anxiety, i guess.

of course, i also have a CAT scan with contrast dye scheduled for next month with my oncologist. this is to check to see if my breast cancer has spread to my lungs or bones. i think that i will plan on visiting my son, daughter in law, grandson, and granddaughter after this test. they live near my oncologist. spending a little time with them is another good thing for me to  look forward to.

so my overall plan is to focus on the good things in my life, and let the chips, or in this case, tests, fall where they may.

today i had to dance !

today, i have had happy feet. that just has  not been  the case for so very long. having had my thyroid removed from having thyroid cancer, and then having breast cancer on top of that,  has been almost over the top for me. anyone with a thyroid problem, or those who do not have a thyroid, know how hard it is just to get out of bed sometimes- even on a "good day". i have been fighting my  breast cancer with everything that i have. but it has sort of been like i started out in a hole, so to speak. none of my doctors or nurses told me that it would be a little more difficult to go on this unexpected breast cancer journey, when my car was already low on fuel. of course, i should have allowed for this, but i always seem to forget that i have a new normal now.

that said, today was a very good day. i am beginning to see some light at the end of the tunnel. the infection in my chest is almost gone, and my energy level has begun to pick up some. that was one of the things that i have worried about as far as going back to work. i mean, there are no nap times at work. what if i can not do it? i really will not know for sure until i try, i guess, but i have a little more hope today. i have about ten days left until i have to make a definite decision about work. and it will probably go down to the wire. this has been so difficult!

putting the breast cancer issue aside for a minute, wish i could, when you have a thyroid problem you have very, very low energy. as i have said before, thyroid supplements are nice, but whether it is a synthetic hormone or a naturally derived one, there is no substitute  for a healthy, functioning thyroid. there are other very important things that thyroid patients should do. one of them, as i was reminded by one of my best friends, is to check your vitamin b-12 level. B-12 is associated with metabolism, immune function, and nerve function.  if this is low, then you need to supplement- injections are probably  the best way to get it. but if you are tired of needles, like me, the next best way is by sub lingual tablets. oral tablets have a very hard time being absorbed, or getting through our digestive systems. i  have learned something new today about sub lingual b-12 tablets. seems they are not all equal. our body( specifically our liver) converts the cyanocobalmin form of b-12 to the active form of b-12 which is methylcobalamin. if our liver is on top of things, then this would probably not be too much of a problem. but as we age (!) things get more complicated. long story short, it would probably be more beneficial to get the methylcobalamin tablets. only problem is that the only place that i have found to get these ( yes, even walmart does not have them) is on line.

i am rather cautious when it comes to vitamin supplements. i like to go with a national brand, like nature made or nature's bounty. i want to make sure about how a product is made. is it consistent from batch to batch? how safe are the company's  manufacturing practices? where is it manufactured? these things are important to me. i also need to have medicine that is free of sulfite preservatives- that is a whole other blog!

another important concern for thyroid patients, and all cancer patients really  is maintaining an adequate vitamin D level. when i was first diagnosed with thyroid cancer, my vitamin D level was almost zero. vitamin D plays an important role in keeping our bones healthy, but it also has a major role in keeping our immune systems healthy. i have read some interesting studies concerning vitamin D and longevity in cancer patients. personally, i take prescription strength vitamin D. most people do fine on the over the counter types, but everyone needs to have their vitamin D levels checked at least yearly. and of course, talk with your doctor about supplementation of vitamin D. she/he can advise you if you need supplementation, and what type would be best for you.

so today,  as i was working in the kitchen, i had music playing. it was a special cd that my son gave me for Christmas. some of you may be familiar with the musical group, "arrogance". they were my favorite band when i was in college at UNC-chapel hill. i am dating myself here, but i just loved their music. i found myself dancing, and out of breath, but having a good time. while i know that i can not go back to zumba (yet) i still love to dance. i was so happy to be able to shake a leg or two for a change. i feel like there is hope, and for the first time in a long time, i feel like i am going to get better.

an open letter to a newly diagnosed cancer patient

a very nice person from the organization," cure forward", asked if i would write an open letter to a newly diagnosed cancer patient. i had planned to write a new blog on my THYROID cancer website  today, anyway. i have been hanging out on my BREAST cancer website lately, so i am overdue for a new blog here. without further ado......


dear newly diagnosed cancer patient,

you are in what  i call the OMG stage of your journey. your doctor has just dropped a bomb on your tidy little world and your head is reeling. your world as you have known it has changed forever. some things will be bad, of course, as you already know. but there are many positive things that will happen going forward. for this first stage, cry, scream, howl at the moon for a day or two. life is not fair, but i have found that trying to figure out " why me?" is  a waste of my precious time.

after you have adjusted to the news somewhat, and vented your frustrations a little, i advise that you get to work! research, research, research! read every credible thing that you possibly can about the type of cancer that you have. there will be many things on the internet that you should avoid, but there is good information available,too. i recommend sticking with the tried and true medical websites- mayo clinic, web MD, about.com,  the american cancer society,etc. i also purchased a few books on each of my two cancers. if you do purchase some books, i would advise using amazon or some other service where you will be able to read reviews. that will save you money, as well as time. here is another piece of advice: invest in a notebook to keep all of your medical records, test results, and anything else that you can get your hands on. your tests and records belong to you! do not be afraid to ask for copies of them. i can not tell you how many times having a copy of a test or doctor's visit  has come in handy for me.

decide on the type of treatment, what physicians you will be going to, and where you will receive your treatment. for my thyroid cancer, i asked my endocrinologist to recommend a good surgeon. she recommended a surgeon that was in the same town as her practice( i drive 4 hours to see her). seeing a physician in this same town was not feasible this time. i knew that my breast cancer would be more time consuming- 3 surgeries, 12 weeks of chemo,etc. so i wanted to be closer to home. i was lucky to find a hospital that was only an hour away, and was listed as an accredited breast cancer facility. i think that you should try to get the best care possible, but travel restrictions have to be considered as well.

i hope that you have good support from family and friends! that has been so very important for me. some people have told me that i have a positive attitude, or that i am brave, but this would not be possible without the help, love and support of others. practice gratitude daily. when you are grateful for even the smallest things in your life, amazing things happen. it is true that when you send out positive energy, it comes back to you. i think that it is good for your health as well.

and speaking of your health, if you have not been eating well or exercising, now is the time! be sure to have good nutrition, especially if you will be requiring chemotherapy. if you are not sure about what foods are good for you, your doctor might be able to recommend a dietitian that could help you. it is time to say goodbye to the clown ( for the most part), and hello to the fresh fruits and vegetables department of the grocery store.

if you have been exercising regularly, you might have to scale it down a bit. i had to pack up my belly scarf and zumba shoes for a while. of course, check with your physician, but a short walk several times a week will probably make you feel better . don't get me wrong, though. i loved zumba, and i fully intend to get back to shaking my booty just as soon as i am able. it may take me a while, but it is one of my personal goals.

and speaking of personal goals, make some. look ahead to the future. cancer has a way of helping you decide what is really important in your life. none of us really have the time to waste on things that just do not matter. a cancer diagnosis can help you " cut to the chase" in your life. i will say again to surround yourself with positive, helpful people. and remember to thank everyone who has helped you. i wish you luck and good health going forward. i will leave you with my favorite quote from the hobbit, and one that i have used several times in my breast cancer blog. " so comes snow after fire. and even dragons have their endings."

good luck and best wishes,
bea

results from the big six months checkup- that i only had once this year

i am supposed to have my thyroid cancer check up every six months, and i usually do- that is until this year. because i was diagnosed with breast cancer this year, and was " involved" with that, i missed my check up in april of this year. the fact that i did miss that check up, added to the fact that i had a second primary cancer, caused me to be very apprehensive about this check up. i had the blood work ( six tubes out of the back of my hand- but that is another story) done last week.  yesterday , i had my ultrasound done first. i was a little anxious during the test  because the ultrasound technician kept going over one area again and again. it brought back memories of my first ultrasound, when my thyroid nodules were discovered. keeping the mood light, you might say, i asked the technician if she was seeing any " goblins" in there. appropriate for this time of year, i thought. she said everything looked fine. i guess she was just being thorough.

next up was a bone density test. the reason for this is that keeping the TSH essentially zero so as to hopefully prevent thyroid cancer recurrence , and the fact that i am now taking an estrogen blocking drug to help prevent any breast cancer recurrence puts me at a higher risk of having  osteoporosis. i have some bone loss in the " neck" area of one of my hips. it is not enough to warrant treatment, but unfortunately it is in an area that is prone to hip breakage. that said, i am not overly concerned about it. i am taking a high dose of prescription vitamin d, and my levels were good there. for some unknown reason, my calcium level was 9.3. it has never, ever been that high! i usually am in the 8 to 8.30 range. i am not taking a calcium supplement, but am trying( obviously doing a good job) to get calcium from foods. the reason that i am trying to get it through foods, is that when i was taking an oral supplement i got a kidney stone! natural (from foods) sources are best-  and it does not have to be entirely dairy products. kale, for example, has more calcium than a container of milk. kale also has two times the vitamin c found in a medium sized  orange, and has a healthy dose of omega 3 fatty acids, which is essential for brain health( heaven knows i need that!). one caution about kale: it is one of the worst foods for containing pesticides. if you decide to eat lots of kale, it would be best to go organic in this purchase.

the last part of my check up was a visit, or the big reveal, with my endocrinologist. i can not say enough good  things about my doctor! she is compassionate, willing to discuss my treatment, compromise when necessary and she listens to me! she does not rush me out the door. she decided to reduce  the dose of my levoxyl for three  reasons: one, i have lost weight due to the  chemotherapy, and thyroid hormone dosing is partly weight based. two, a TSH approaching zero can cause osteoporosis, as i had mentioned earlier. and three, a very low, or near zero,  TSH can sometimes cause heart arrhythmia's.  since it has been five years since my thyroid cancer with no recurrence, we both agreed to try a smaller dose and see how that goes. i am a bit nervous, i will admit, but i understand the reasons for reducing the dose. i am just hoping that this will not allow my thyroid cancer to return. with thyroid cancer, unlike some other cancers, a patient can have a recurrence at any time. there is no set time line for being cancer free with thyroid cancer, you have to be tested for the rest of your life and your dosage has to be finely tuned . if your thyroid hormone  dosage is too low, there is a chance for recurrence, but if it is too high, you have a risk of some serious side effects. it is a slippery slope, you might say, but no thyroid hormone supplement- be it naturally or chemically sourced can compare with having an actual functioning thyroid gland. feeling well without a thyroid is not easy, as i am sure that anyone who is missing one will agree.

so, i have made my appointments for my next big check up- which will be in april of next year. some of my blood work values are still not straightened out from having had  the chemotherapy. but they are improving, and i expect that the next time i have blood work done, everything hopefully will be back to normal. i am trying to rest, eat well and exercise. i have my last surgery for breast reconstruction next month. and my husband and i are going to go to the beach, which is something that i have wanted to do ever since i got the breast cancer diagnosis. i know that this is a thyroid cancer blog, but there is a link with my thyroid cancer and this second primary cancer. not all is known about the link at this time, but i am hoping that with continued research in both thyroid and breast cancer that perhaps in the near future we will have more information about the prevention of both of these cancers.

oh how i hate hearing these words: " oh, you have thyroid cancer? aren't you lucky to have the good cancer!"

unfortunately i heard those words YET AGAIN this week. and it was from a friend of mine who is a doctor. for me, hearing this from someone in the health care field is more frustrating than hearing it from someone who is not a health care professional. perhaps i just expect more compassion and understanding from someone in health care, but that is not always the case.

i did not hear these dreaded words  from my endocrinologist. she is very caring and understanding about thyroid cancer and the challenges that thyroid cancer patients face every day. i had to miss my big six month check up this past april, due to my breast cancer diagnosis. i will see my endocrinologist next month, though, and get one check up in this year. i am more nervous( than usual)  about this check up, i guess. having had another primary cancer i can not help but worry about how my thyroid cancer is doing. my surgeons reassured me that the cancer cells that they found in my breasts were not thyroid cancer cells, meaning that my thyroid cancer had not spread there. i do know that if you have had  thyroid cancer you have a fairly significant risk for other cancers. yet another worry for us .i would guess that these primary cancers occur , in part, by a weakened immune system. this is not fact, just my opinion.

here are some facts, though about thyroid cancer( and why it is not the good cancer). according to the american cancer society, there will be approximately 63,000 new cases of thyroid cancer in 2015. of these, 2,000 people will die of thyroid cancer in 2015. thyroid cancer  is the fastest growing cancer now. not the highest number of cases( yet), but one of the few cancers to have an increase in  incidence rates. thyroid cancer affects all age groups- from children to senior citizens. interestingly to me, the number of cases of women with thyroid cancer was about three times more than men. i have not read any theories as to why this is.

in a huffington post article, by anna almendrala, dr. allan ho, md, who is a medical oncologist at memorial sloan kettering cancer center is quoted as saying " recurrence can occur in about 10-30% of thyroid cancer patients, and take place 10-20 years after treatment.  the excellent survival rate associated with most thyroid cancer eclipses the hardships patients go through in treatment and lifelong maintenance of the disease." i am sure if you, like me, have sweated the six month ultrasound tests, and the blood work to test for the presence of thyroglobulins, that quote hits home. also worrisome is the fact that NO HORMONE SUPPLEMENT, either " natural" or synthetic can do what that little butterfly shaped gland  can do for our bodies. it is a constant struggle for most people, from what i have read, to discover what medication and dose works best for them.

if after reading this blog, and the few facts about thyroid cancer that  i have reported, you can still call thyroid cancer the " good cancer", then i suggest that either you do further reading ( the online source called thyca is a good choice) or by all means, talk to a thyroid cancer survivor. we can fill you in on the daily struggles of this disease and the struggles to help people understand what thyroid cancer patients live with, basically, for the rest of our lives. no cancer should ever be called the " good cancer". as a thyroid cancer survivor AND a breast cancer survivor i can assure you that i wish  i had had neither one.

http://beasunexpectedjourney.blogspot.com/2015/09/this-blog-is-2-fer-or-as-they-sometimes.html

" Ch-ch changes, turn and face the strange... time may change me, but i can' trace time; i watch the ripples change their size, but never leave the stream of warm impermanence, and so the days float through my eyes, but still the days seem the same. " from Changes, by david bowie

the fact that i am going through a lot of changes now, does not even seem to cover what is happening to me! so, now, faced with charting a different course for my breast cancer journey, i am forced to postpone  my big six month thyroid cancer check up. i was supposed to get blood work done this week, then go down to raleigh next week for an ultrasound, bone scan and  office visit with my endocrinologist. i called today to re-schedule these appointments. they are now scheduled for august- hopefully i will be able to make them. this makes me so nervous, postponing this. it is big check up! no, i am not having any problems with my neck that i know of. but i honestly thought that my thyroid cancer had reoccurred, and was now somewhere else. the reason that i was convinced of this, was the fact that i was having the two big symptoms that i had before my thyroid cancer diagnosis. those were  extreme fatigue and increased anaphylaxis reactions to foods that contain sulfites. i take medicine for my sulfite allergy, and really the only good " treatment" is avoidance. but there were some foods that had previously caused reactions that i had been able to eat for a while. when i started have reactions to these foods again, i was worried.

this is another example of a point that i frequently make in my blogs. if you feel that something is wrong with your body, then it probably is. trust your " gut" feelings. this holds true for your health care providers,too. second opinions are crucial sometimes, and if you need to change doctors, do so. easier said than done, i know this. but everyone should be their own best patient advocate. it is also helpful to keep copies of your records. one example of this, is one time i was having an office visit with my endocrinologist. she needed to look at my pathology report and she could not locate it in my chart. i happened to have my " thyroid  cancer"  notebook with me,  which contains copies of all of my tests and lab work. i said, oh, i have a copy here. so, she made a copy for my chart. you might look at the practice of  keeping copies of tests and lab work as  not only beneficial for yourself, but for your health care providers as well.

i am continuing on with this blog, as i said, although i am sure that most of the action will be going on at my breast cancer blog: an unexpected journey...my journey with breast cancer. a friend of mine commented on the fact that she knew someone who had thyroid cancer and breast cancer. she asked me if there is a link between the two. i have wondered about this,too. i know someone personally who has had both, and on a popular website for thyroid cancer patients, there are several patients who have   had both types of cancer. is there a link? i think so, but there is no scientific evidence to prove it... YET.  i hope that someone is studying this, and that someday we might have this information. if i had been aware of the possible link, i might have done a few things differently. but that is easy to say now- hind sight is always 20/20. i have always had my yearly mammograms, and that is good. i am hoping that if any thyroid cancer patient who may be reading my blog is behind on her mammograms, please catch up!

so, as i face all of the changes going on around me, i hope that i can make the best decisions that i possibly can. my decisions will be made through research, talking with other breast cancer survivors, and of course paying attention to my " gut feelings".

" the best-laid schemes o'mice an' men" - from the poem," To a mouse, on turning her up in her nest with the plough" by robert burns

in fact, i feel like a mouse who has just had her nest turned up by a plow. despite our best efforts in planning, life seems to get in our way and turn up our little, comfortable nests. my ancestors were scottish, so a poem by robert burns seems appropriate- not just for the sentiment.

my" best laid plans"  were to have my usual 6 months thyroid cancer check up starting with blood work next week. then the week following that, i would be discussing the results with my endocrinologist. i also have a bone density test and an ultrasound of my neck( to make sure there are no beasties there) scheduled on the day of my office visit.  of course, now ,i have to cancel all  of this. i am not sure when/ how i will reschedule all of these tests.

i am not having any problems with my neck area , that i am aware of, and of course my breast cancer issues have trumped my thyroid cancer. still, i am a little nervous missing the six month check up. my endocrinologist keeps me on a six month schedule because i not only had thyroid  papillary cancer, but a small section of follicular variant- which is a more aggressive type of cancer. leave it to me to be a little different.

i am going to call on monday and cancel my appointments with the endocrinologist. i called yesterday, but the office was closed. i had hoped to make at least the office visit,tests,etc, and thought that i could if i had to have just the lumpectomy. but i am sure that i will not feel like riding for 8 hours in the car to see my endocrinologist after my mastectomy(s).

yes, i am now considering asking about a double mastectomy. i have just heard the news about the actress, Rita Wilson, and her decision to have a double mastectomy. i am not sure about the details of her cancer versus mine, but she did have the same cancer as i do- which is called invasive lobular. anyone who has met me for a few minutes probably knows that i am a " worrier" kind of person. i have dense tissue and calcifications in both breasts. i would very much like to not have to worry about the other side, or worse yet, have to go through this process twice.

if you have read my breast cancer blog, you know ,that by the grace of God, i got another radiologist who saw what the other radiologist had missed. the second radiologist did another biopsy called a sterotactic biopsy, and found that some of the calcifications were indeed cancerous. so this wonderful woman( she is my hero now) saved me from having two surgeries. i would have had a  lumpectomy for the tumor mass, and then would  have to have had  a mastectomy to get the dastardly cancer cells. ( if you look up the word dastardly, here is the meaning: wicked, evil, heinous, villainous, diabolical, despicable, sordid, etc, ,, such a perfect word in this situation).

i suppose that i am going to have to wait and see if any "sarah palin", aka, rogue, thyroid cancer cells are causing any mayhem elsewhere in my body. when thyroid cancer cells travel, they take up residence in the lungs and bones. i know for a fact, i had to have a chest x-ray before surgery, that my lungs are fine. beautiful, actually, since i am a non-smoker.( my doctor showed me the x-ray).  as for my bones, i will just have to hope that they are "rogue" free, as well. there could be some beasties in my neck or lymph nodes, but hopefully not.

i have lots of important decisions to make in the next few days. i will research everything that i can, but basically i think that i will go on my "gut" feelings, as i have so far. that and my faith, family, and friends have been getting me through what is the most difficult time in my life. and of course, i will be starting on a new nest...

an unexpected journey........................" no, i do not want any adventure, not today!" quote from the hobbit by JRR Tolkien

some of the symptoms that i had when i was first diagnosed with thyroid cancer were extreme tiredness( and i am not talking about the " usual" tiredness, but one that is so pronounced that at times i was not sure that i had the energy to drive home from work) and my severe(anaphylatic) reaction to sulfite preservatives in food. after my surgery and treatment for thyroid cancer, and with the help of my allergist, these two symptoms improved. i was not as tired, and while my allergy to sulfites did not go away, it was much improved. i was actually able to eat SOME  foods that had once made me sick.

you can imagine my concern when these two symptoms came back! so, i called my endocrinologist about three months ago, and since my t-3 was a point down from my usual reading, we reasoned that it was my lower t3. she prescribed a 5mcg dose of cytomel to add to my levoxyl dose. i decided to take the cytomel in the afternoon - when i began to crash. as for the worsening of my sulfite allergies- well, i did not know what to think. i saw my allergist about two months before i saw my endocrinologist and began my " thyroid cancer journey" and at that time my allergist  said that she thought that i may have a malignancy somewhere in my body. but where?

my big thyroid cancer check up is at the end of this month. honestly, i thought that my thyroid cancer must have returned. the two places that thyroid cancer typically migrates to is the lungs and/or  bones. i had just had a chest x-ray last month . ( i was planning on getting a knee replacement in may and had to have a pre-surgery physical. ) my chest x-ray was perfect- no lung problems. my bones were fine, as far as my doctors and i know, so no problems there.

a couple of weeks ago, i had my  yearly mammogram and pap test. i got a call from my gynecologist's office that i needed more studies on my left breast. this has happened before- in fact three times. i have dense breasts with calcifications. i was not worried. i went to a diagnostic center for a 3-D mammogram and ultrasound. the radiologist showed me the films and said that i have a mass in my left breast. he said that it was very suspicious. ok, now i am worried.  from there , i went to see a surgeon who is experienced in breast surgery. he told me that he usually does not tell patients this before the biopsy results come in, but he was pretty sure that i have breast cancer.

i can not even begin to tell you what a shock that was! i do not have any risk factors, there is no breast cancer in my family at all, and i breast fed my children. the only "culprit" may have been the estrogen and progesterone tablets that i have taken for a few years. so, the next step was to have a  breast biopsy. i had that on monday at 10am. the biopsy was done by a radiologist who specializes in breast biopsies. he and his staff were wonderful to me. kind, professional, and they tried to make things as comfortable for me  as possible.

today i received the official results: yes, i have breast cancer. my surgeon told me that i have a cancer that is called " invasive lobular". it is a rare form ( figures) which only comprises about 10% of all breast cancers. the mass is small, he did not give me exact measurements, and he thinks that a partial mastectomy ( lumpectomy) along with six weeks ( 5 days per week) of radiation therapy will be all that i need. he is going to biopsy two lymph nodes under my left arm. if they are positive, then i will probably have  to have more surgery and possibly, chemotherapy,too. also, if he does not get clear edges, and he will not know this until after my surgery, i will have to have basically, a full mastectomy.

when i was diagnosed with thyroid cancer, i felt so alone. no one knows very  much about thyroid cancer. some people do  not even know where your thyroid gland is located! if it were not for my blog, and all of the kind people who reached out to me through it, i am not sure how well i would have managed. breast cancer seems different. although thyroid cancer is the fastest growing cancer, more women( here i mean greater numbers )  have breast cancer and there are more support groups and resources available. that does not mean that i feel any less worried or scared. i wish, though, that thyroid cancer would get the attention it deserves.

so i decided to start a new blog. no, i am not abandoning this blog, but i will have another blog about my experiences with breast cancer. it will be called: an unexpected journey.... my journey with breast cancer. i decided on the name of the blog in  the same manner that i usually get the titles for my blog entries. i woke up with the song from the hobbit movie  on my mind. it is that sweet little melody that is played whenever the hobbit gets near home. oddly enough, the same day i was in a book store and saw a journal, which i purchased, that had " the hobbit, an unexpected journey" on the cover. i said enough already, i get the message, and so that is how i came up with the title. hopefully, the hobbit people will not mind me borrowing a bit of this for my blog title.

i hope to be brave, funny, and be able to  provide information to other women who may be taking this journey,too. for every new journey there is a beginning. mine begins today.........

thyroid cancer has lots of baggage, i think. for me it was skin cancer, and sulfite allergy.......

in my blog i have mentioned my bout with squamous cell cancer on my leg. it was about a year after my thyroid cancer. and while i do not think that my thyroid cancer "caused" this cancer, having thyroid cancer for so long before i was diagnosed certainly weakened my immune system. that is just my theory for having skin cancer so close to my thyroid cancer.

one subject that i have never, ever mentioned in my blog,though, is my sulfite allergy. you could say that it is what got me on the track to discovering my thyroid cancer. for years, i had been sulfite sensitive, and then all of a sudden it became a severe sulfite allergy- involving anaphylaxis. at my wits end, which was not too far of a trip at this point, i consulted an allergist. well, let me back up, i actually had to go to FOUR different allergists before i found one who A) believed me and B) wanted to help me.  the allergist i finally found was wonderful to me. the fact that someone finally believed me was such a relief! the only problem, was that while she prescribed some allergy medication for me, she said the only "treatment" is avoidance of foods/drugs/cleaning products,etc, that contain sulfites. before i go on to list some sulfite names, products,etc, i would like to explain how this allergist got me on the road to my thyroid cancer discovery. she told me that my immune system was severely compromised- that was why i was having anaphylactic reactions ( sometimes as often as 3 or 4 times a week) to sulfites. she told me frankly that she thought that i had cancer somewhere in my body! i had had all of my routine tests for cancer- mammogram, pap test, colonoscopy, so i racked my brain as to where it could be. the only area that i was having trouble was my thyroid----- BINGO! i found an excellent( i have to call her excellent, because she saved my life) endocrinologist who started with a very thorough biopsy, and well the rest is thyroid cancer history, you might say.

now, back to sulfites. what in the world are they? well, they are additives that are used to make food last longer and look better.( they keep food/medication from turning dark ) . in other words,   they stabilize drugs and other chemical solutions. they do not have to be listed on any product unless they contain more than 10 parts per million. some products, though, contain several hundred parts per million. and some fruit and vegetable products can approach 1,000 parts per million.
some common names for sulfite preservaties, when listed, are:
sulfur dioxide, potassium bisulfite, potassium metabisulfite, sodium bisulfite, sodium metabisulfite, and sodium sulfite. you could correctly say that the "sulfite" part in the name gives it away.

back when i was just sulfite sensitive, i had intestinal troubles- i will not list them, as you can probably assume what they were. when i progressed to an allergy, i developed a rash, tingling red skin, headache, trouble breathing, chest pain, in other words, anaphyaxis. ironically, one of the drugs to treat anaphylaxis, an epi-pen, contains sulfite preservaties to keep it from turning brown! in the past, i was able to obtain one brand of epinephrine( what epi-pen contains) which was sulfite free. that company is no longer in business, unfortunately.

people who have sulfite allergy or sensitivity are pretty much in the minority. ( sort of like the 5-10% chance of having thyroid cancer when you have thyroid nodules). i have had to research this for myself. my allergist has offered moral support, but i am the only one who can do anything to help myself. i have to avoid foods which i think contain sulfites. there is a large list- i do not have the space to list everything here, but i will give you the short list. some  fresh fruits and vegetables( to prevent browning), shrimp and lobster( same browning issue), condiments and relishes, white sugar, jams and jellies, grain products and pastas, snack food, processed foods, instant teas, the list goes on. for anyone really needing a complete list, i can recommend going online and searching sulfite allergy. i continue to learn about this, and it has been a major " game changer" in my life. i have not eaten out in a restaurant in over ten years. i buy only organic food, though some foods  naturally contain sulfites that i have to avoid, even organic. these are onions and garlic and grapes. i did not know how hard it was to cook without onions and garlic until this happened!

i asked my allergist when i saw her the year after her prediction, and told her about my thyroid cancer, surgery,etc. if this sulfite anaphylaxis would now go away. she said probably not- once the allergy pathways have been established( her words) they do not usually go away. i have read also, that sulfite allergy is more common in people who have asthma. i have mild asthma, by the way.

this is not a "whiner blog "today. i would just like to let people know about sulfite allergy and be educated. if i had only known about my sulfite problem and not kept eating the foods that were making me sicker and sicker, perhaps i would not have progressed to full blown anaphylaxis ? if my immune system had not gotten so compromised from fighting off the thyroid cancer for so long before i got treatment, perhaps this sulfite allergy would not have progressed ? who knows for sure, of course.   i have adjusted to my dietary restrictions, most of the time. occasionally, i will eat something that i think is o.k. but makes me sick. i can usually figure out what it was that made me sick, and i do not repeat my mistake.   i love to cook, so this is not as hard for me as it would be for someone who hates to cook. my family has been very, very supportive in this. for that i am extremely grateful. i keep epinephrine and hydroxyzine( an allergy medication) on hand for when i have anaphylaxis.

thyroid cancer has lots of baggage. it is not a quick fix, or a one pill solves all sort of cancer. it is not the good cancer.