" i recall when i was young, my papa said, " don't cry, life is full of ups and downs like a roller coaster ride. there'll be times you'll get so scared rollin' down these hills. but you hold on tight with all your might... you go up, down, all around on a cycle that is never ending." rollercoaster, by blood, sweat, and tears.

there are times when song lyrics sum up just the way one is feeling. this happens to be the case for me. i feel like i have been on a roller coaster ride  for eight long years. oh sure, there have been plenty of wonderful times over the past few years.  but just when i think that i have made it to the crest of the hill, my coaster
 car seems to plummet over the edge again.

i remember riding the ultimate, at the time, roller coaster. that scream machine was called " space mountain" and it was at disney. my husband and i took a short trip to disney about a year after we were married. after much trepidation, i got into the coaster  car with my husband. he assured me that it would not be that bad! there were no seat belts, and the only lights were little twinkling lights that looked like stars. i can almost still hear the grinding of metal on metal as we went on our journey upward on the roller coaster track. at the top, the car stopped for a few seconds that felt like hours, then went hurling over the edge into a dimly lit abyss. i thought i was going to die. or at least get thrown out of the car. i promised God, that if i lived to get out of that coaster, i would never be foolish enough to try it again.

the image of my one time space mountain ride, a promise is a promise after all, is how i feel about having had cancer twice. it also pretty much sums up every six month checkup that i have to endure. the anxiety, the ups and downs, the feeling of being out of control. and speaking of, what has conjured up the roller coaster again, is the fact that i will be having a skin biopsy in a couple of weeks. now, i have had skin cancer twice- squamous and basal, but i do not even count those on my cancer scoreboard. no disrespect to anyone who has had to deal with aggressive squamous, basal, or heaven forbid, melanoma. there is no good cancer!

when i left the dermatologist's office yesterday, the nurse told me to try not to worry. unfortunately, when it comes to me, that would do about  as much good as telling a sailor to not worry about the weather when a hurricane is brewing nearby. i am a worrier by nature, and having had  cancer sure has played into those feelings. i feel like i am on that roller coaster again, and it is getting ready to go off of the edge. of course, everything will probably turn out o.k. i am a Pollyanna person at heart. but my track record may beg to differ with that assumption.

so many people have difficult issues to deal with. i saw that when i was working in the pharmacy. just when i thought i would feel sorry for myself, here comes this really sweet, or cranky, person who had it WAY worse than i did. that has been very helpful to me- working with people and realizing that just because someone looks fine, does not mean that they actually are doing well. one time, i was talking to another pharmacist on the phone ( we were trading prescriptions) and she asked me how i was doing. i said the usual stuff along the lines of "oh, i am doing fine,etc, how are you?" then she said, i know you have had cancer, so how are you REALLY feeling? my coworkers knew of my health issues, but i generally did not discuss it with customers or others, so it sort of caught me off guard. i also would feel  emotionally drained whenever i discussed something that i was trying, if just for a few hours, to forget. but i appreciated the other pharmacists concern, and i told her that, really- i was fine.

we never know what issues, health or other , that people are dealing with. it is very important, especially in today's world, to be kind to everyone. have a little patience with someone who is driving 20 miles below the speed limit. hold the door open for someone who is entering a store as you are exiting. say " hello in there" to quote john prine. these things do not cost any money, and can make someone's day. who knows when one might be on the roller coaster going down instead of up. as for me, i am just getting ready to" hold on tight with all my might."

the thyroid cancer, and developing another primary cancer link.....

so, as many of you know who read my blog, i had thyroid/parathyroid cancer in 2010, and breast cancer in 2015. when i had thyroid cancer, i was vaguely aware of a possible link between having thyroid cancer and having breast cancer OR vice versa. i was interested in this subject, so i began to do some research. 

i will add here, that i did read that some people felt that there was a link between RAI treatment and the possibility of developing breast cancer. my" go to" thyroid cancer book, thyroid cancer, by m. sara rosenthal said that there was no proof that RAI treatment would cause breast cancer.  the author, a thyroid cancer survivor herself, felt that it was better to treat the thyroid cancer that you have, and be diligent about having regular mammograms. that is the path that i took- to treat my thyroid cancer aggressively, and to be completely honest, i would have the RAI again. my thyroid/parathyroid cancer was stage 3 and i had an aggressive area of follicular variant in addition to papillary thyroid cancer. i have since heard people argue back and forth on this possible link, but there is no evidence that i have found yet, anyway, that would definitively answer this question. my best advice, which is good advice for any woman if you have had thyroid cancer or not , is to have regular mammograms and do monthly  self breast checks. 

it was when i was undergoing chemotherapy for breast cancer, that i found this statistic: according to the american cancer society, cancer survivors can have a recurrence of their original cancer, but also are at risk ( the general consensus is 30%) of developing a new, unrelated cancer. this cancer is called a second primary cancer. to quote the american cancer society, " no matter what type of cancer you have had, it is still possible to get another new cancer, even after surviving the first." if you are a thyroid cancer survivor, it is possible to get any type of a second primary cancer, but these cancers have an increased risk for thyroid cancer survivors. they include:

* breast cancer- in women

* prostate cancer

* kidney cancer

* adrenal cancer

there is also an increased risk of stomach cancer, acute lymphocytic leukemia, and salivary gland cancer if you have been treated with RAI. since i have had a history of salivary stones after my RAI dose, i am paying particular attention to my salivary glands. i have had some swelling in my parotid salivary glands that i will be getting checked out. and yes, i would still have had the RAI treatment. it is an individual decision, made by each patient and their physician, but i still feel  that it was the best choice for me. 

i have had some people ask me where i read about  the 30% increased risk  of having thyroid cancer and then a second primary cancer. once source that cites this statistic  is an article in cancer epidemiology, biomarkers and prevention. i have seen higher percentages and lower percentages, but 30% seems to be the most common percentage that i have seen, at least so far.  this article in cancer epidemiology, biomarkers and prevention, goes on to say that a breast cancer survivor was 1.55 times more likely to develop thyroid cancer than a person with no history of breast cancer. the article also states that a woman who had had thyroid cancer was 1.18 times more likely to develop breast cancer than one with no history of thyroid cancer. 

WHY??  the article mentioned above stated that there are several possible explanations. for one thing, a cancer patient is more likely to go for check ups, thus other cancers could  possibly be detected earlier than in a person who has not had cancer. there could also be a common hormonal risk factor for both diseases- and those hormones  are  estrogen and thyroid stimulating hormones. this article states that use of RAI may have a very small impact on the development of other cancers, but the risk remains unclear. i was hoping for a definitive answer on this, but there does not seem to be one. again, when making  the decision to have RAI or not,  it is best to discuss the patient's best treatment based on staging, if the thyroid cancer has spread, how aggressive ( type) the cancer is, among other things. one needs to have a strong relationship with one's physician in order to come to the best decision as far as treatment and possible outcome.

my blog today is not intended to spread fear and mayhem. it is purely to inform others of the importance of regular screening tests, especially mammograms, if one is a thyroid cancer survivor. and thyroid screening tests if one is a breast cancer survivor.  i have always thought that knowledge is power. how we use that knowledge is not only beneficial to our physical  health, but helps our state of mind. knowing that we, as thyroid or breast cancer survivors, have made the best decisions that we can for ourselves should make us all sleep better at night. a cancer patient should be their own best patient advocate. read articles. be informed, keep copies of your tests and doctor visits. be informed. you be the boss of cancer, do not let cancer be the boss of you. 

"... i can't stand her doing what she did before, living like a gypsy queen in a fairy tale...well, i did not think the girl could be so cruel and i'm never going back to my old school." my old school, by steely dan

after you have had cancer treatment, surgery , chemotherapy or whatever, people tend to expect you to go back to the person that you were before your tango with the big "C". can you return to your former self? the short answer is " NO". but that is not always a bad thing. i do not like using the term " my new normal." but that pretty much sums things up.

cancer carries a lot of baggage with it, as i have said before. there is PTSD, for one thing. i have flash backs of my surgery and immediately afterwards. especially my first day in the shower after the mastectomies. nothing can prepare you for that. people have told me, trying to be encouraging, well,"they are only breasts, and besides, you will have perky ones now!". just to fill anyone in who thinks this, what i got was not a " boob job". my plastic surgeon said these exact words to me :" honey, you ain't getting no boob job." and believe it or not, i appreciated him saying  that. breast reconstruction was a long, and rather painful process.  my so called " perky breasts"  are rock hard , numb , and  my chest  hurts fairly often.  thanks to my 3D nipple and areola tattoos, i do  feel better when i catch a glimpse of myself in the mirror. i highly recommend the tattoos. i never thought i would try to persuade anyone to get a tattoo, but Vinnie Myers, who does only breast  3D tattoos, is a hero of mine.

another accessory that comes with thyroid and breast cancer, and any cancer really, is the fear of recurrence. test anxiety is fairly common, and hard to explain unless you are a cancer patient. to this day, and it has been nearly three years since my last chemotherapy treatment, i get sick to my stomach when i smell the hand sanitizer in my oncologist's office. i turn green. and no matter if i shower off when i get home or not , the smell remains with me for the rest of the day. i used to get sick when i pulled into the parking lot, but i am a little bit better about that now.

there are other health conditions that i have now thanks to the cancers that i had. lymphedema can occur in anyone who has had lymph nodes removed. it is not a condition limited to the arms or legs. you can actually have this in your head or neck, if you have had  lymph nodes removed as you would if you have had thyroid cancer. it is important to see a special CLT ( a  physical therapist who has had extra training on  how to do lymphatic massage).  i wear active massage arm  compression garments, as that is where i have lymphedema. i also do the manual massage at home, as well as some other self care techniques.

for my thyroid cancer, i had a large dose of radioactive iodine, aka, RAI. while this gets rid of any rogue ( i have referred to them as Sarah Palin cells in the past) thyroid cancer cells that are trying to go to other places in your body,  there are a few  side effects to this treatment. would i have  the RAI  again? YES.  but i did have salivary stones about 7 months after my treatment. this has been an on and off thing. i am now having trouble with my parotid salivary glands. is it a stone or a cyst? i am not sure, but i am going to be checking on this- first with my doctor, and then with an ENT surgeon, if my physician  thinks it is necessary.

now for the positive side of cancer- there is one, believe it or not. here is some of what i learned :  i know what is important in life. i know who my true, real friends are. i appreciate my family more, especially time spent  with them. i do not let the little  annoyances in life  bother me as much. i would like to say, i do not let little stuff bother me at all, but i am trying to be honest here. i have found out that i am stronger than i thought. i am taking better care of myself- eating better, getting more sleep. and i try to find some quiet time each day- porch sitting, just to look around and be grateful. i tried learning to meditate, but my porch sitting time is as close as i could get. being out in nature is soothing to me. i think  when we connect with  nature, we feel that we are  a part of the world. i somehow feel less sick, less of a patient, and more just like someone who belongs. 

oh, and the song lyrics title? it has really nothing to do with this blog. it is just my favorite steely dan song.

" i almost cut my hair; it happened just the other day; it was getting kinda long, i could have said it was in my way. but it didn't, and i wonder why. i feel like letting my freak flag fly..." almost cut my hair, by crosby, stills, nash and young

hair is an issue that is near and dear to all of us- female and male alike. when we start to see our hair circling the shower drain, or populating our brushes, the subject of hair takes on an urgent quest for answers and treatment. there are many causes of hair loss- from medications we take, stress( we like to blame this for numerous problems), heredity, and certain health conditions. i am going to discuss hair loss associated with thyroid disorders, specifically, hypothyroidism. i will add that hair loss can also result from being HYPERthyroid, too. and as a side note, if you are taking the drug, anastrazole- a chemotherapy drug taken daily by breast cancer patients to block estrogen production, you may have thinning hair. there are other drugs that can  potentially cause hair loss or thinning. i am not mentioning them here, as i am trying to stay on topic. the list is long, and if you are really interested, you may check Webmd  for the full list.

if you have had thyroid cancer and had  surgery to remove your  thyroid, as i did, then you are the very definition of being hypothyroid. folks, it just does not get any more "hypo" than this. thyroid cancer patients have to depend utterly and completely on the dosage of thyroid medication that we take to feel good as well as to keep  our bodies functioning properly.  as the thyroid gland controls almost everything in our bodies, including our hair, it is very important to find the correct dose and type of hormone ( synthetic or naturally derived ) for each of us. this is not a one size fits all type of thing. and it can be a slippery slope- with lots of dosage adjustments, that, frankly, can be frustrating. i can not tell you how many times that my thyroid dosage has been changed- increased or decreased. i have tried naturally derived, synthetic, and i have also tried that wonder drug that some physicians will not prescribe, cytomel ( pure t3).

as i stated above, the thyroid gland controls almost everything in our bodies. and that includes our hair follicles. an imbalance in the T3 and T4 production in our bodies affects the development of the hair at the root. the hair will fall out and may not be replaced until the hormone ( T3 and T4) is back in sync. so, hair thinning or loss could be a result of poor levels of thyroid hormones. this could be a sign that a dosage adjustment is in order. in my opinion, it does not hurt to supplement with some vitamins or minerals to help our hair follicles.

low ferritin ( iron) levels in the body can also cause hair thinning or loss. iron is important for hair growth. if the ferritin level is low, the body- ever resourceful- will take the ferritin from the follicles and give it to more important organs, such as the heart.  you need to get tested and monitored for ferritin levels, though. taking too much is harmful for the body. i think that it is something to discuss with your physician and be monitored closely for.

another helpful supplement, though not everyone benefits from this, is biotin. another name for biotin is vitamin B-7. natural sources of this vitamin are found in small amounts in eggs, milk, and bananas. the B vitamins are water soluble vitamins that are beneficial for  skin, nails, and hair. some people have reported acne when using biotin. i think that if you try this, try the smallest dose first. i have seen OTC strengths from 1,000mcg all the way up to 10,000 mcg. probably the most important thing to remember about biotin, that even though it may be  working for you as far as hair growth goes, it can significantly affect many lab tests, including thyroid lab tests! it can give false highs as well as false lows. if you are taking this supplement, it would be wise to stop a good while before your blood work. also, i think it would be wise to let your physician know that you are taking this supplement. this is rather new information, so many physicians may not be aware of this as yet. there is an article that was published in the  january, 2016 issue of  Endocrine News about biotin use and interference with lab results. this might be helpful information to have when having this discussion with your physician.

some common sense ideas about being good to your hair include using a gentle shampoo, taking it easy on blow dryer and hot iron use, limiting or eliminating the use of hair bands for a tight ponytail style, and my favorite, using a silk pillow case. the silk, or polyester " silk" allows the hair to move over the pillow case without pulling the hair out. as a bonus,  it is so nice to sleep on. 

when i had chemotherapy for breast cancer ( it will be three years ago this august), i lost all of my hair- everywhere on my body. to be honest, i am rather obsessed with my hair.losing  it was pretty traumatic for me. i learned to tie  a head scarf really well, and wore a soft cotton sleep cap. i was pretty excited when my hair grew back! it took a while, and it was different- weird color and extremely curly, but i was happy to see it. i told my husband that i was going to let it grow to the floor, lol. of course, that did not happen. being hypothyroid has caused some thinning, and the chemo left me with a permanent little bald spot that you have to look for, but i am very conscious of. i have delved into trying to find out what supplements i can take , as well as other things i can do to make my hair more healthy and full. as with almost everything else, it is not a one size fits all kind of solution. but trying to keep my T4 and T3 levels within the good range seems to be one of the most important solutions. really, we are a hair obsessed nation, as a whole. this will be an on-going project for me, as it probably will be for everyone else facing hair loss. and after  having no hair, i will never, ever say that my hair was " kinda in my way."

i am afraid that i have the " could it be cancer again?" syndrome

in between my thyroid cancer in 2010, and my breast cancer in 2015, i had an unfortunate experience with a kidney stone. what caused it is up for debate, but bottom line is that i had to have surgery to remove it. it was painful, and i do not want to have one again. last month, i began to exhibit symptoms similar to my first encounter with " the rolling stone." everything bad thing that you hear about kidney stones, is true by the way! pain,stents, etc, it is in a class by itself. so, i went to my family doctor first- to get an x-ray and discuss the problem. my family doctor did an x-ray, and thought he saw " two suspicious areas" on the x-ray. uh-oh. what did that mean? i was having some of the symptoms as i had  the first time, but not all of them. i asked for a referral to my urologist, and made the appointment. my most unsettling symptom was pain in my back and around my side. not like when my kidney dropped it like a rock into my bladder the first time, and subsequently i dropped to the floor. but this time i had  a dull and constant aching pain.

upon looking at yet another x-ray, my urologist was not so sure that i had one or two kidney stones. my insurance company would not pay for a CT stone study like both my primary care physician  and urologist wanted, bless the insurance company's black heart, but they did approve an ultrasound. i have had to wait for that ultrasound for several weeks now. during that time, i let my imagination run away with me. you probably guessed it- i was worried that i might have kidney cancer. after you have had cancer once or twice, it does not seem all that implausible that you could have cancer again. i try so hard not to be neurotic about my health. i never used to worry about getting sick. really,seriously  sick, i mean. sore throats, sinus infections,etc. happened sometime. but cancer? no way! as i have said before, the thyroid cancer was not totally unexpected because i had had thyroid nodules for a while.  when they started growing, i knew something bad was happening. but the breast cancer really was a surprise  and not a happy one, of course.

so today, finally, i had the appointment for the ultrasound. i did not sleep well last night. i imagined that the next step might be a biopsy, and then what? good thing that they hardly ever check my blood pressure when i go to the urologist, because it would have probably been near stroke level. embarrassingly enough, i have the " white coat syndrome". i used to wear a white coat every day, for goodness sake! i talked to doctors and nurses all day. i was not afraid of them, i was afraid of what they might discover, i suppose. and one other thing. my urologist does not do a " clean catch" for women. oh no, they use a catheter for us. that is enough reason to send my blood pressure into the call 911 range. . but today, for the first time, the nurse handed me a cup! i looked at the nurse and said " REALLY??". I GET A CUP TODAY??  i grabbed the cup and ran before she could change her mind.

so, my urologist did not see anything suspicious on the ultrasound. he said that he would have felt better if  my insurance had allowed me to have a CT scan, but he said my kidneys looked just fine. false alarm, thankfully. no cancer. i am to come back if things get worse, or other symptoms pop up. i am probably the only person who wants to go to the grocery store, it was a health food store- by the way, to celebrate. but my sweet husband took me to the  " food matters"store  to get a few goodies. life is good again. the consensus is that i twisted some muscles in my back and side, somehow, and this combined with some side effects of the anastrazole ( a chemotherapy drug that i take every day to prevent a breast cancer recurrence ) were to blame. i hope that there comes a day, before too long, when i do not think " it might be cancer" right off the bat. i am not sure how many others have this " could it be cancer?" syndrome. i know that some of my close friends have this disorder. and i think it is a part of post traumatic stress. i am a worrier, but having had cancer twice takes things  to a whole other level.

so i went yippity, skippity, out of the health food store today, celebrating my good fortune at not having cancer again. you might be interested in knowing what i bought. i got some organic asparagus, an avocado,some lettuce,  and of course, some chocolate. but it is o.k. after all, the chocolate is organic.