Monday, February 27, 2017

"the long and winding road, that leads to your door. ...the wild and windy night that the rain washed away, has left a pool of tears, crying for the day." the long and winding road, by the beatles

i had my oncology blood work and visit with the oncologist today. for those of you who think my title might be just a bit dramatic, i will try to explain how i feel every time that i have an oncology appointment . when my husband and i get near the oncology center, a huge, sprawling building- a city in itself, i get nauseous. and not just any nausea. i am re-visited by the ghost of past chemotherapy nausea. clearly not as bad, but present just the same. my hands get damp, my blood pressure rises, and my heart pounds. sometimes i am not sure how i made it through chemotherapy. my spiritual beliefs, the incredible support from  my family and friends certainly helped, but when you think about it , chemo  is a one trick pony show.( with the patient being the unfortunate pony).  i sincerely hope that no one in my family, or any of my friends, ever, ever have to go through this! sure, the surgery was traumatic, but the chemotherapy was just unimaginable. after having said all of this, yes, i would have made the same decision to have chemotherapy. i trust my oncologist, and that was his recommendation. i am hoping to be around for a while longer for my children and grandchildren, and this was a necessary evil.

it is funny how we, or maybe it is just a "me" thing, associate smells with feelings.for example,  the hand soap at the oncologist's office- very anti-bacterial of necessity- also makes me feel  sick. the smell of it sticks to my skin like melted bubble gum to hot pavement. it takes me several times washing my hands at home to remove the smell. even after a hot shower tonight, i can still smell it on my hands. luckily, all the employees of the oncology center  do not wear perfumes to work. that would probably be over the top for most of the patients.

i have graduated to every six months ( i was having to go every 4 months) for re-checks now. a minor victory by some standards, but major to me. my blood work is almost normal ( i will probably always be a little abby normal, to quote young Frankenstein). it is good enough to satisfy the oncologist, anyway. no swollen lymph glands, or lumps or bumps to report. so i got a good report today. one thing that REALLY made my day was the fact that instead of recommending the anastrazole ( brand name- arimidex. adjunct chemotherapy drug that blocks estrogen production) be given every day for 10 years, the doctors can go back to just having their patients take it once a day  for five years. this is very big news for me. the anastrazole is causing major bone/muscle  pain for me and the thoughts of having to take this for 10 years was a little overwhelming. i can handle 5 years, i think. when my oncologist told me that i was on the 5 year schedule now, instead of the 10, i almost fell off of the exam table! yippity skippity!

i have not heard back from the skin biopsy on my face, but barring any bad news on that front, my skin check, oncology blood work/doctor visit, and thyroid cancer blood work, ultrasound and doctor visits are now all  on the every six months schedule. and somehow, they are now in sync. two in august, and one in september. better to get them all over with at about the same time.

my cancer journeys ( i hate that this word is plural) have definitely been a long and winding road. there have been a lot of tears shed, but not all of them have been tears of sadness. i realize that i am lucky in some very important ways, and hope to continue to be so,

Friday, February 24, 2017

Skin cancer- a cautionary tale

almost all of us know about the importance of self breast checks and mammograms. we are getting more familiar with "check your neck" or thyroid cancer awareness. but i think there is another type of cancer that needs to be addressed, and that is skin cancer.

i am a natural redhead with fair skin and freckles. i will admit to "touching up" my red hair to ward off some stubborn gray hair that i am not quite ready to show off. with my skin/hair combo comes some challenges. it was not until i was in college that i began to appreciate my red hair, i.e., instead of getting teased all the time, i actually got some dates because i had red hair ( amazing). it was also, unfortunately, in college that i began to understand that no matter how long i sunbathed, or how much baby oil i used, i would only get more freckles or worse, a very bad sunburn. i owe my enlightenment to a college roommate. her dad was a plastic surgeon in raleigh, and she said that her family never went to the beach for vacation- they went to the mountains. her skin was snow white when it was not fashionable. my roommate also said that some of her dad's " best" customers were people who had had too much sun exposure.

sadly, the damage to my skin that i am seeing now occurred when i was a child. i remember many bad sunburns growing up. i fell asleep on the beach for a couple of hours one time and was in agony for the whole trip home as well as  several days afterwards. to be fair, no one really connected skin cancer with too much sun exposure when i was growing up.

which leads me to the "cautionary tale" part of my blog. i went to the dermatologist yesterday for a skin check. last time that i went, my dermatologist told me that i could wait a year for my next checkup if i wanted to. i told the receptionist when i made my appointment that i would feel better coming back in six months. as it turns out,  that was a good idea. i had 3 pre-cancerous places on the back of one of my legs( aka, actinic  keratosis) which were frozen off. i also had another squamous cell carcinoma on the same leg as last time, which was cut off. squamous cell is a relatively serious skin cancer in that it can spread to other parts of your body if not treated fairly soon. basal cell is the least likely to spread, followed by squamous, and then the really bad one, melanoma.

i also had a place on my face, close to my mouth. ( talk about putting your money where your mouth is). my dermatologist told me something that he has never told me before. " bea, i honestly do not know what this is! it could be another basal cell, and if it is, you will need more mohs surgery. or it could be just a benign cyst." so he did a biopsy of that place, and i will get the results in two weeks or less he said. as a side note, he recommended this time that i return in six months, not a year, for my re-check. i agreed.

i am not entirely sure why skin cancer has decided to pick on me,too. i now have three types of cancer that i have to get checked out every four to six months. i have my  breast cancer check up with my oncologist on this monday. that one is a biggie. i will be a two year survivor in may of this year, so test anxiety is still pretty high for me for that one. i am doing better about my thyroid cancer checkups. my doctor seems more encouraged, and so am i. unfortunately, there is no " five year mark and you are clear" when it comes to thyroid cancer. recurrence can come at any time. my doctor has had patients have a recurrence at seven or even 20 years out. but i am grateful for each day that i can say that i am cancer free.

so please, if you are not wearing sunscreen, do so. you can not change how much unprotected sun damage that you may have received when you were a child, but do the next best thing. visit your dermatologist yearly, or more frequently if necessary, for an all over skin check. it is not a difficult test, and your body will thank you.

Monday, February 6, 2017

"...put de lime in the coconut, she drank 'em both up...she call the doctor, woke "im up.. said, " doctor, ain't there nothin' i can take, doctor, to relieve this belly put de lime in de coconut, drink 'em both together, then you feel better...yes, you call me in the morning and i'll tell you what to do" coconut song, by harry nilsson

honestly, if you have not heard this song, it pretty much describes  what thyroid patents go through just trying to get our lab values correct for us, so that we feel more " normal". i say more normal, because even the best hormone replacement drug or dose does not come close to a healthy functioning thyroid gland!

so i have been on the new drug- Nature-throid, for about three months now. i just had an office visit, and blood work with my endocrinologist to determine if this is working better for me. i had previously been on Levoxyl- which is a synthetic, t4 only drug. the Nature-throid is a naturally derived combination of t3 and t4. just to give you an overview of some of my labs, previously- in october, my tsh was 0.025( essentially zero), my t4 was 1.79 ( this is a little on the high side), and my t3 was 2.4 ( a little on the low side). my anti- thyroglobulin antibodies were less than 1.0 IU/ml which is considered negative. without going into a detailed explanation of anti- thyroglobulin antibodies, i will just say that in the thyroid cancer world this is considered being thyroid cancer free. for 3 years, my anti-thyroglobulin antibodies were elevated. my endocrinologist had almost decided that i needed another dose of the I-131. my body must have heard her, and said "no, no, no" because my levels went down to normal after that. thankfully. i hope never to glow in the dark again, ha ha ha.

this is what my labs were this time: t4- 0.74 ( now, this is low!)  tsh- 0.332 ( still considered low, but up quite a bit from october. this makes me nervous- i will explain why later). t3 was 2.7. this is up a little, but still lower than i had hoped for. i feel that i need to be a little over  3, to be feeling less hypo. ( the range is 2 to 4.4). i had hoped that with the nature-throid, having the t3 in the drug,it would raise my t3 more than it actually did. i am going to explain my feelings on each of these three lab values. what i think they should be to enable me to feel better. i will also explain my endocrinologists thoughts, which are not always in sync with mine.

first, t4. at times, my t4 has been 2.0. i will admit that this is too high. (the range is 0.82 to 1.77). when a person's t4 gets too high, one could have heart palpitations, and be more susceptible to osteoporosis, as well as having other HYPER thyroid symptoms. i felt fine when mine was 1.79. i actually  felt fine at 2.0, which it has been on occasion,  but my endocrinologist was nervous. she was afraid that i would develop some heart arrhythmias. ideally, i would like for this to be 1 or over. this is where the "not quite in sync" with my endocrinologist's thoughts come in.

next, t3. this is the "energy" part of the thyroid hormone. t4 is metabolized to t3 and gives you energy, helps with weight loss, as well as other wonderful things. too much of this could also cause osteoporosis, though. bummer. i have had a love/hate relationship with t3 since i started my journey. my endocrinologist said that i can take additional t3, in the form of cytomel. i am taking the lowest strength, 5mcg, once daily. i think that it is already making a little  difference in my energy levels, among other things.i had been hoping that the combo drug would be enough to raise my t3 level, thereby causing me to feel better, but it did not. too much t3 can also cause heart arrhythmias, and can make you feel jittery. it is a slippery slope, folks.

last, but not least, tsh. my endocrinologist has been keeping my tsh at essentially zero, these past 6 years. i will give you the quick reason for this. tsh ( thyroid stimulating hormone) does just that- stimulates thyroid production by the thyroid gland. only thyroid cells can make thyroglobulin(TG). by measuring anti-TG antibodies,one can determine if there are any thyroid cells present. now if you do not have a thyroid gland, like me, and your anti - TG antibodies are positive ( over 1), then the thyroid cells are not contained in your thyroid gland, but are thyroid CANCER cells. these rogue cells can take up residence anywhere in your body, but especially like to stay in your lungs or bones. ( perhaps they get more frequent flyer miles if they stay here?).

 PROS to having a low, or near zero, tsh: does not stimulate any remaining thyroid cancer cells to go on vacation. CONS to having a higher tsh: could possibly stimulate any thyroid cancer cells to go forth and multiply. a very low tsh ( near zero ) is also associated with heart palpitations and osteoporosis. my endocrinologist said that she was comfortable with my tsh even being 1. me, not so much. i worry more about stimulating any thyroid cancer cells than i worry about heart problems. and by the way, my bone density test has actually improved over the last one! i attribute this to taking a prescription dose of vitamin d, but this could be a whole other blog.

there are several other tests that a patient would want to get from their doctor, especially if that person has a functioning thyroid gland. i am not going to discuss those other tests, but you can look them up on a reputable web site, such as the one hosted by mary shomon, called about ms. shomon also has several really good books on thyroid function, tests,etc.

so what now for me? well, i am not giving up on the nature-throid. it is a naturally sourced drug, and considered hypoallergenic, which means that it is free of a lot of binders, colors, and other artificial things that i do not want. for whatever reason, i have trouble getting a high enough t3 value, and this has contributed to me not feeling well. so, i am also going to be taking the cytomel at least once a day. my endocrinologist said that i could take it twice a day if i needed to do that. i am proceeding slowly with this. sort of titrating up to a dose that hopefully works for me. i have to have blood work done again in may. the results will be sent to my doctor- no office visit this time. in august, i will have more blood work done, and an office visit as well as my usual six month ultrasound( to make sure that i do not have any hob goblins hiding out in my throat).

at the end of this month, i will be getting different  blood work done  and have an office visit with my oncologist. i still have to see him every 4 to 6 months for my breast cancer check ups. i think that i will just add some lime to my coconut and call all my doctors later. much later.