Thursday, April 19, 2018

a thank you to those who follow my blog...i was surprised and honored by this.

Anuj Agarwal anujsagarwal@feedspot.com

7:47 AM (11 hours ago)
to me
Hi Bea Young-Smith,

My name is Anuj Agarwal. I'm the Founder of Feedspot.

I would like to personally congratulate you as your blog Losing the Butterfly has been selected by our panelist as one of the Top 15 Thyroid Cancer Blogs on the web.


I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 15 Thyroid Cancer Blogs on the internet and I’m honored to have you as part of this!

We'd be grateful if you can help us spread the word by briefly mentioning about the Top 15 Thyroid Cancer Blogs list in any of your upcoming post.

Please let me know.

Best,
Anuj

" ...sometimes i feel a little mad...but i'm just a soul whose intentions are good, oh Lord, please don't let me be misunderstood." " don't let me be misunderstood" lyrics by the animals

i had my yearly check up with my gynecologist this week. things were fine- just routine stuff. he gave me sort of a "mini- physical". the doctor listened  to my chest, blood pressure check,etc. and  all was fine until he said, " well, now, let me check your thyroid." as his hands encircled my neck, i said, " oh, well, i had thyroid cancer, remember?, so i do not have a thyroid." and then he said those awful words. those words that make every thyroid cancer patient's ( well almost every) blood boil. " well, if you have to have cancer, that is the good one to have! easily treatable, high cure rate,etc." at this point, i sort of tuned him out. i wish that i had said more, but what i did say was, " well, i would not say that to someone who has anaplastic thyroid cancer." FYI,  there are at least five different types of thyroid cancer, with anaplastic being the most serious. a person can have one, or a combo like i had.

i had stage three papillary, with an aggressive area  of follicular variant. two of my parathyroids were also cancerous and had to be removed. i had 11 lymph nodes removed. because of the stage and aggressive nature of one of the types of thyroid cancer that i had, i have to still be monitored with blood tests, ultrasounds, and office visits every six months. and it will be 8 years on may 19th. it is a real challenge to keep my thyroid levels at the point where my TSH is suppressed enough to hopefully prevent a recurrence of the disease, while still maintaining a good quality of life.

i am a member of several thyroid cancer websites. i am constantly reading posts that state that someone has told a thyroid cancer patient they have the " good cancer". good and cancer do not belong in the same sentence, in my opinion. i used to say nothing when someone said this to me. i know people are trying to be nice, but i had hoped that this misconception about the " good cancer"was going away. the symptoms of a hypothyroid patient, with a thyroid that functions somewhat, are many. the thyroid is the " master gland" in the body and controls just about everything. being hypo after having the thyroid removed puts patients into a whole new level of hypo. thank goodness for thyroid hormone supplements, but they are no where near as good as the hormones produced by a happy, healthy thyroid gland.

and we should not forget that if you have had thyroid cancer, you are at about  a 30% risk of having another primary cancer. i know all about that,too. that is why this is a 2Fer blog. so, although my gynecologist meant well, i believe, i expected more understanding from a health care professional. i do feel like thyroid cancer patients are very misunderstood. it is not a five year and you are done kind of cancer. thyroid cancer requires lifelong monitoring and testing. thyroid cancer is the fastest growing cancer now in the country. perhaps as more people have to deal with this, there will be more understanding of the challenges facing those with thyroid cancer. i sure hope so...

Monday, March 26, 2018

" Lord almighty, i feel my temperature rising, higher, higher it's burning through my soul...help me i'm flaming, i must be a hundred and nine...i feel like i am slipping away, it's hard to breathe...just a hunk, a hunk of burning love." burning love, by Elvis Presley

so in the first blog of this series, i talked about the RAI diet- and how you have to wait a while before you can have that cheeseburger in paradise. the second blog was somewhat boring- a technical mash up of why the diet is important, what RAI actually does for you, and some tips and procedure advice. this final blog ( for now anyway, i seem to return to this topic on a somewhat frequent basis) is just a retelling of my experiences with the treatment dose of RAI.

in my family, whenever we tell a story we always start with " and so i got there." i will begin there. i talked my endocrinologist into letting me have my RAI treatment dose at a hospital near me. that was so i could be at home for my isolation, and not in the hospital. so i got there( to the hospital near me) and met with the radiologist who would be taking care of me during my adventures with radioactive iodine. the radiologist started off reading from the pathology report- explaining to me why i needed such a large dose of the RAI. the short version is that i had : unencapsulated tumors, diffuse infiltration into my neck bed and lymph node area, stage three,etc. i also found out that i had cancer in two of my four parathyroids.  when he was telling me all of this, i actually had to refrain from turning my head to look behind me. surely he was talking to someone else! my husband was with me and i highly recommend taking your spouse, best friend, neighbor, or whoever with you when you are to be receiving news like this. at times i just spaced out, but my husband filled in the blanks for me later on.

i had my surgery on May 19th, 2010. i had a thyrogen injection on july 19th, along with a chest x-ray and a full CBC ( blood work). on july 20th, i had another injection of thyrogen,. on wednesday, drum roll here, i had my treatment dose of RAI. thursday i got to rest- ha,ha. and then on friday, more blood work. the following week, i had to come back to the hospital for a full body scan. nothing too interesting about the thyrogen injection on the 19th and 20th, but the day i got my RAI was a day that i will never forget.

i was apprised again of the "rules of being radioactive." i was sitting in a treatment room, alone, when the radiology technician came in. at least i think that it was her. whoever it was had on a full haz-mat suit- from head to toe,  although it looked a little bit like she was planning a walk on the moon instead of handing me my RAI dose. what she placed on a little table in front of me was in a very heavy lead box about the size of some canned goods. inside, the walls were about three inches thick all the way around. there was a glass vial inside that contained a capsule, about the size of an extra strength tylenol, that was filled with some white powder. there was also a small bottle of water. she told me, in a muffled voice,  that i was to open up the box, AFTER SHE LEFT THE ROOM,  remove the capsule from the glass vial, and swallow it as quickly as possible. she said that it needed to go down fast- not roll around in my mouth. i somehow  managed to get it down without choking. before the technician left the room, she told me that  from the time i swallowed the capsule, i had exactly one hour in which to drive home and get upstairs in isolation.

in order to deal with the situation, i immediately thought of the show " mission impossible". the theme song was going around in my head. i had accepted the mission and i had to move quickly to complete my task, before myself and everyone around me, crashed and burned. i will now say that about 30 minutes into the trip home, my throat got sore and i felt like someone was pressing on my throat where my thyroid had been. later on, after i had sprinted upstairs to my isolation room, i did feel hot to the touch, and i had some nausea. this is what made me think of the "burning love" song. i would have liked an anti-emetic, but a cold wash cloth and sipping on some ginger ale worked pretty well. even though i had snacks upstairs in a dorm refrigerator, i did not feel like eating. i did drink sour lemonade and lots and lots of water, though.

so, i made it to friday. i drove myself to the hospital and prepared to make my way to the lab for another blood test. i could find my way to the radiology department blindfolded, but i had never been to the lab. i was told to keep at least 6 feet between me and others, and to not get anywhere near someone who might possibly be pregnant. as i was making my way down the hall, i happened upon a man from housekeeping who was buffing the floors. i had to yell, which made it worse i think, " i am radioactive, stay back from me, but could you please tell me if i am heading in the right direction to get to the lab?". needless to say, he certainly kept his distance. in fact he was probably thinking, " man, this lady needs directions to the psych ward instead of the lab." he did tell me that i was on the correct path and to turn left two doors down the hall way.

which brings up another interesting story. this one deals with the fact that i was not to  get anywhere near someone of childbearing age. the med tech at the lab, who was holding a huge needle and heading straight for my poor over-stuck arm, was of child bearing age. i was going to try to be subtle, but the situation called for action. i shouted, " are you pregnant?" the med tech immediately smoothed down her scrub top, and said, " well no! my oldest child is four years old." i know that she was thinking " i wonder if this top makes me look fat?" believe me, you do not want a person wielding a large needle to be pissed off at you! i told her quickly that i was radioactive, and was told to ask this before my blood test. she looked relieved, and actually thanked me for asking- eventually.

i had nausea for four days. i could go downstairs after my husband left for work, but i had to wear disposable gloves and sit on a piece of plastic. i put a plastic, disposable mattress cover on the bed upstairs. i bought some cheap sheets and a couple of towels that were discarded after i " had done my time in isolation". i also discarded the clothes that i had been wearing, along with magazines and paperback books that i had been reading. all my plates, cups, utensils had to be discarded. i did choose the ones that were made from sugar cane or whatever. my husband would come home, fix dinner, put it on the stairs and run! actually, he sat in the dining room where i could see him. we could talk that way and that was actually nice. after a few days of this, however, i felt like the crazy woman in those Victorian novels- you know, the one who gets locked up in the attic? i was lonely, and i really, really wanted a hug from my husband! of course, that was not possible. besides, one of us " glowing" was enough.

which brings me to my full body scan, which was done  on July 28th. it was an open scanner, thank goodness, and they scanned me slowly from head to toe. i felt like i was holding my breath the whole time which was not possible, as the scan lasted about 45 minutes. when they were finished, the technicians said, " wow, your neck lit up like a Christmas tree!". ha- ha- ha. that did not put me in the holiday spirit, you might say. but  then i tried imagining that the RAI had light sabers, and that there was a fierce battle going on in my neck. i preferred to think that the jedi RAI fighters had the advantage over the rogue thyroid cancer cells.

and in fact, that was the case. my final results were as follows: chest x-ray was clear; there was  focal uptake in my anterior neck( think Christmas tree), but no evidence of distant metastatic disease in head, chest, abdomen, or pelvis. i had another full body scan in december of that year, with similar results. i did have elevated TGA and TG for the next three and one-half years,  but that is another story for another day.....


" well, i'm hot blooded, check it and see, i got a fever of a hundred and three, i'm hot blooded, hot blooded." hot blooded, by foreigner

this is my second in a series of blogs about radioactive iodine( I-131), the treatment dose. also known to his friends as RAI. one does not really have a fever after receiving RAI, but you perhaps could  think of yourself as being " hot blooded".  in this blog, i will give some  of the facts, information and so forth about RAI. in my third, and last blog on this subject, i will relate my personal experience with that wild and crazy guy.

so, your thyroid cancer ( usually papillary, follicular, or both) has been shown to benefit from a dose of RAI. this depends on the tumor staging. lower risk patients may just have surgery and not the RAI. higher risk patients will most likely get a dose of the RAI. this dose is expressed in millicuries. the usual range of RAI is between 100 and 200 millicuries, as i stated in my last blog. the treatment dose of RAI is usually given between 3 and 6 weeks after surgery.

to get ready for the RAI, you will need to be on the low iodine diet. since you read my last blog, you realize how important this diet is to your treatment success, so you have followed it religiously. another very important part of preparation before RAI is raising your TSH level. why, do you ask? well, it is important that every remaining thyroid cancer cell be awakened and ready to gobble up the RAI. TSH stimulates the thyroid cancer cells to take up the radioactive iodide cells. the low iodine  diet and raising the TSH work together to insure that the RAI is effective in killing the remaining thyroid cancer cells. these thyroid cancer cells may be rogue- in different parts of the body already. or they may be just hanging out in the neck area. either way, to prevent recurrence of the disease, it is important to kill them.  i liked to think of the RAI as little jedi knights, complete with light sabers. i will expand on this in the next blog, when i talk about my own experience.

there are two different ways to raise the TSH. one is brutal- the patient has to be off thyroid medication for 3 to 6 weeks. this is brutal because most people do not want to be without thyroid medication. ask any hypothyroid patient how they feel without their medication and they will definitely explain the mental fog, fatigue, body aches, etc, associated with a high TSH. there is another way to raise the TSH, thankfully. the TSH can be raised quickly with Thyrogen injections. it is a series of injections given a few days before the RAI is given. both methods  are considered equally effective. my doctor recommended the Thyrogen injections for me- i was still working ( up to the actual RAI dose) and it would have been impossible for me to do my job with brain fog. i was very fortunate that my insurance company covered this medication- some do not.

unfortunately for me, i could not get my doctor to prescribe anti-nausea medication prior to me receiving the RAI. some doctors will routinely do this, but my doctor did not. i did have pretty much nausea after receiving the RAI, but i did not actually vomit, thank goodness. the nausea only lasted about a day or so. if you are prone to nausea, as i am, i would recommend at least asking your doctor for some anti-emetics, if they do not routinely prescribe them.

some people stay in the hospital after the RAI is administered. some people go home- as i did. it depends on many factors. who is sharing your home( small children, pregnant women,etc), how your home is constructed- do you have an area, say an upstairs part, that you can be isolated in? the time of isolation varies. your physician will tell you the length of time that you need to be isolated. you will still be on the low iodine diet for a while during RAI and for some period of time after treatment. it takes a while,it could be months,  for those little jedi knights to get to all of the thyroid cancer cells.

between 2 and 10 days after the RAI treatment dose, you will have a whole body scan. getting to the hospital for this can be very tricky. you need to stay at least 3 to 6 feet away from people, especially children and pregnant women, for at least 8 days. you also need to keep a safe distance from your pets. most radiation from the RAI,( although radiation detectors at airports,etc, can detect small amounts of radiation for up to three weeks), is gone in about a week. your physician may have specific instructions about the amount of time you need to be isolated. please be sure to follow these instructions. you do not want to expose anyone unnecessarily.

another good tip, which i did not read about until after my RAI, is that it is a very good idea to get a good dental cleaning prior to treatment. the RAI affects the acidity of the saliva, and can also  cause dry mouth. dry mouth can lead to dental issues, i.e. tooth decay. it is also recommended that harsh toothpastes and mouth wash be replaced with sensitive toothpastes, or better yet, baking soda.  brushing your teeth with baking soda, several times a day, and flossing is very important. the RAI can cause a metallic taste for some, so the frequent brushing with baking soda may help with this issue as well.

i have just mentioned a few basic facts, tips and precautions associated with a treatment dose of RAI. every one's situation is different. your physician may recommend other tips and precautions that would be more helpful for your situation. be sure to have a clear understanding of what you need to do to help keep yourself and others safe during the RAI. a treatment dose of  RAI should not be physically painful, but being in isolation is difficult. it is emotionally draining. i wanted a big hug from my husband, but of course that was not possible for a while. i will admit that i was lonely during this time of isolation. i had paperback books and magazines to read ( i disposed of them afterwards) and i could come downstairs and watch TV when my husband was at work. i had to wear disposable gloves and sit on a piece of plastic on the couch. for more of my adventures of RAI story,  please stay tuned for  the next blog...





Thursday, March 22, 2018

" i like mine with lettuce and tomato, heinz 57 and french fried potatoes,big kosher pickle, and a cold beer.." now hold on a minute, Jimmy Buffet. if you are getting ready to be on the low iodine diet before your I-131 treatment, your "cheeseburger in paradise" is going to have to wait a while...

it is rare, or maybe i have never written two blogs in two days, but here  is a subject that i would like to expand upon: the low iodine diet for patients before a treatment dose of I-131 is given. in my next blog, this will be a short series, i will go over isolation procedures  after the treatment dose of  I-131. what to expect, how to prepare for it, what to do,etc. but, again in my opinion, the diet is probably the most important part of the treatment. why, do you ask? i will explain, but first i will mention that the thyca website has some excellent information on this subject. here you will find  recipes and useful information. i personally purchased an excellent book on the subject. it is called, not surprisingly, " the low iodine diet cookbook" by norene gilletz. the author explains some of the reasons why a low iodine diet is so important. ms. gilletz also has tons of recipes, and they are grouped into breakfast, lunch, dinner, desserts, snacks, and children's menus. the introduction to the book is written by Dr. Kenneth Ain. he explains the importance of reducing iodine in your diet before, during and perhaps for a short time  after receiving the I-131 treatment dose. i will try to explain it in my own unique way...

thyroid cells love, love to " eat" iodine. they use it to make thyroid hormone. if you have had surgery for thyroid cancer, and your thyroid is gone to wherever they send bad thyroids to, theoretically you should not have any thyroid cells left  in your body. but let us pretend that the thyroid gland is the mother ship. before the mother ship is destroyed, it sent out escape pods ( little bits of thyroid cancer cells) to other parts of the body. ( they especially like to go to the lungs and bones). so these rogue thyroid cells are now escaped thyroid cancer cells . even the best surgeon can not possibly get these tiny little guys. the trick is to get the thyroid cancer cells to feed on the radioactive iodine, not the regular iodine in the diet. you starve your body of the regular iodine, and the thyroid cancer cells are attracted to the radioactive iodine like moths to a flame. and you know how that turns out...

if a patient does not follow the low iodine diet , as instructed by their physician, it can cause severe consequences. perhaps there can be a recurrence elsewhere in the body. maybe another treatment of the I-131 would be necessary. when i read in some thyroid cancer forums that some people say, laughingly, that they have cheated on their diet, i want to scream. they have in fact cheated on themselves. the diet is a challenge, to be sure, but it is a drop in the bucket time-wise when compared to the rest of your life.

the diet usually begins two weeks before the treatment dose of I-131 and continues for a week or so after the dose when scans are usually  done. the amount of time after the dose of the I-131 is given and scans completed seems to vary. this is usually just a day or two- but check with your physician to be safe. the list to avoid is long, i will admit. i will mention just a few things here. iodized salt and sea salt must be avoided, but non-iodized salt is o.k. dairy products have to be avoided. this puzzled me at first. why? milk from any mammal( that is right- no goats milk allowed, though i am not sure why anyone would want to drink it) has a high concentration of iodine. also, commercial dairies use an antiseptic containing an  iodine product  to clean the area that is to be milked. so no milk or other dairy products are allowed on the low iodine diet. no chocolate is allowed ( big sad face here) because of the milk content. red colored ( especially  red dye #3) in  medicines and foods should be avoided. this was an odd one- that is why i mentioned it. i looked up the chemical  structure of red dye #3 and found that it contains iodine. mystery solved, i guess. and just a reminder, lipsticks and some other cosmetics contain red dye #3. it would be best to avoid these until after the treatment  as well.

 the list goes on and on, and that is why a patient needs a detailed list to refer to while on this diet. ms. gilletz recommends not eating out- because you can never be certain what exactly is in your food. and i do not mean that in a bad way, but even well meaning waitstaff and cooks may not realize the importance of sticking to the diet. another thing to omit while on the diet is multivitamins. most multivitamins contain iodine, and it would be safer  to omit them for a few weeks. there is a long list of items to avoid in packaged foods. i thought it was safer to just omit them while on the diet. generally, fresh fruits, vegetables and meats are o.k. unless products containing iodine are added to them. another tip: when you see " natural flavorings" on a label, it may include salt. and it would be the iodized salt that you should avoid.

the recipes in " the low iodine cookbook" are really good. i still use some of them, especially the blueberry muffin one. it takes some planning, preparation time and lets face it, some will power to successfully complete the low iodine diet. but it is so worth it. and besides, when you are able to get off the diet, that cheeseburger will probably be the best one that you have ever had.





Wednesday, March 21, 2018

" how does it feel? how does it feel....like a complete unknown, like a rolling stone, to be on your own, with no direction home, like a rolling stone." Like a rolling stone, by bob dylan

first off, i would like to say that i realize that i have used part of the lyrics of this song, like a rolling stone, by bob dylan before. it is just so appropriate when i write about salivary stones! i did some more research about salivary stones and frankly, there still  is not a lot of research on this subject. or the studies are small, and the results inconclusive. yes, it is known that larger doses of the I-131 given after thyroid cancer surgery are more likely to result in  salivary stones production. one theory is that scarring caused by the radiation, and resulting inflammation,  causes the salivary glands to narrow. some people think that the I-131 also causes reduced saliva production, which causes the saliva to also thicken. so you have thickened saliva and narrow saliva glands. yuck.

i have had both a kidney stone and i still struggle with salivary gland stones- a little over 7 years after my I-131 treatment. i can tell you from experience that both types of stones, while quite different, feel about the same on the pain scale. i should mention that along with salivary stones, I-131 has been associated with mouth dryness, taste alterations, infection, facial nerve involvement, cavities, yeast infections, and abnormal growth of tissue( both benign and cancerous).

salivary stones and salivary gland pain/swelling can occur right after treatment with the I-131. it can come on suddenly and then return months, even years later. my physician recommended that i use sour candies and drink plenty of water ( i did both) after my treatment dose of the I-131. do not confuse a treatment dose of I-131 with a diagnostic one! a diagnostic dose, which has not firmly been linked to salivary issues, is in the single digit milicuries range. a treatment dose starts at about 100 milicuries, and can go as high as 200-250 milicuries. there is a definite link, as i said in the first paragraph, in the occurrence of salivary stones and how much I-131 a patient receives. doses over 200milicuries are generally not recommended. i received 155 milicuries. one source i read said that most of the people who had trouble with salivary gland issues received from 100 to 150 milicuries. it has also been suggested that lowering the dose of the I-131 to the smallest possible effective dose is recommended. now, anyway. i understand that it is a double edge sword, so to speak. i, like many others, had an aggressive type of thyroid cancer and even a brilliant surgeon can not be expected to get all of the thyroid cancer cells. the I-131 is necessary, in my opinion- although there are those patients that refuse treatment- to prevent recurrence of thyroid cancer.

i recommend that patients having salivary stone issues see an ENT ( AKA, an otolaryngologist) for a definitive diagnosis. there are some surgical procedures that can be done, but in my opinion, if you opt for this, make sure that the ENT has done a plethora of these before you have this procedure done. there are nerves and other important stuff in this area, so you do not want to do more damage. what can you do now, at home, to cope with salivary stones/ inflammation/ swelling? here are some things that are recommended: warm compresses, gentle massage, sour lemonade( my favorite- make sure to use plenty of lemon juice and pulp), drink lots and lots of water, and for the pain, the ENT that i saw recommended ibuprofen. of course, some people can not take ibuprofen, due to stomach issues, interactions with other medications,etc, so be sure to check with your doctor or pharmacist ( smiley face here) before taking this medication.

hopefully, more information will be available on the treatment, and hopefully even the prevention of salivary gland pain and salivary stones. thyroid cancer is the fastest growing cancer in the US now. (getting  a thyroid cancer diagnosis has TRIPLED over the last three decades according to the american cancer society ). surely, more people are going to have salivary gland issues, so more research hopefully will be conducted into this side effect from the I-131 treatment. 

Wednesday, March 7, 2018

" been beat up, and battered around,...handle me with care; overexposed, commercialized; i've been uptight and made a mess, but i'll clean it up myself, i guess. oh the sweet smell of success, handle me with care. " handle me with care by the traveling wilburys

i just read an amazing article posted by the group, choose hope. the title of the article is " for patients fighting cancer, PTSD, is one more battle." the article went on to say that " new research shows that at least 20% of patients develop PTSD within six months of a cancer diagnosis. this is a rate similar to that of combat veterans."

wow! i personally think, and i do not have any concrete research to back this up, that the percentage is much higher than this. i feel this way, not only because i myself  have been struggling with PTSD, but several other  cancer patients that i know have had similar problems with PTSD. what we desperately need is a holistic treatment for cancer. we have great surgeons, oncologists, radiologists, and other health care professionals in this country.  but we are lacking in mental health services for cancer patients. in canada, there is a more holistic approach to cancer treatment. almost every cancer patient has the option to see a therapist who is trained to deal with PTSD. the article in choose hope said that while this service is  available, not every cancer patient in canada chose to accept it. even when holistic care is offered, there is still a stigma associated with needing care for mental health issues.

the above mentioned article, listed several examples of cancer patients with PTSD who have benefited from various treatments for anxiety and depression. one patient is a thyroid cancer patient, who has been dealing with the effects from having her thyroid removed due to cancer, for most of her adult life. so many things tag along with the big C. not only PTSD, but weight gain or loss, being on medications- sometimes for life- and dealing with the side effects of the very medications that keep us alive and functioning, just to mention a few cancer hanger-ons.

for me, the big deal is A N X I E T Y. i am not a depressed person, but boy, oh, boy, am i an anxious one. testing anxiety, and the fear of recurrence are forever in the rear view mirror of my life. unless it is a testing day, i can pretty much control my anxiety during the daylight hours. but come evening and bedtime- well, it is another story. i worry about my family should something happen to me, although i know that they would be fine. and every lump, bump, nauseous feeling or fever takes on tremendous proportions during the night hours. i bet at this point, you are marking me off your " would like to have a pj party at her house" list. i am certainly not perfect, but i am trying to feel more at ease. i know basically what to do to feel better. i am involved with crafts ( beeswax candle making to be exact), i am walking some ( exercise is so good for mental health as well as fitness), and i am on the waiting list for a Tai Chi class. i have been wanting to take Tai Chi for some time, but had been unable to find a class. this one, the one i am on the waiting list for, is offered at our local senior center. yes, i swallowed my pride, age is just a number-ha, and called the center. seems like there are lots of enlightened seniors that have beat me to the punch. but i am on the waiting list, as i said.

one of the other ways to treat PTSD is talk therapy. this has been the hardest subject to broach for me. i know it is not shameful to need some mental health counseling, but i have not been able to make myself do it. there i said it. ( or i wrote it) . out loud. talk therapy is said to be as effective as medication, when it comes to treating depression and anxiety. perhaps i can make some progress on this in the near future. i said i was not perfect. remember?

so, we cancer patients have been beat up and battered around. we really do need to be handled with some care. we are facing so much more than just surgery, chemo, and radiation. it is our life at stake here, and we need not only to take the best care of ourselves that  we can, but we need for our families and friends to understand what we are going through and be supportive. think of humpty dumpty. when he fell off that wall, he had many pieces that needed to be put back in place. i know that he did not get reassembled, so to speak, but i do believe that with the right holistic care, cancer patients can put back most of the pieces.

Tuesday, February 27, 2018

"every day is a winding road, i get a little bit closer. every day is a faded sign, i get a little bit closer to feeling fine." every day is a winding road, by Sheryl Crow

today was my six months check up for breast cancer. in may, i will officially be  a three year breast cancer survivor, and an eight year thyroid cancer survivor. my surgery dates were only 3 days, and five years, apart. may, as a month, has not been so good to me. it is quite the coincidence, really.

so, as usual, as my husband and i got closer to the oncology center, i tried to divert him into the far right lane, instead of the left one. the right lane leads to the interstate, and eventually( 3 or 4 hours later ) to the beach. the left lane leads to the oncology center. it is a long standing joke between my husband and me. well, an  almost  three year one. the very first time that i went  to the center  for my  first chemotherapy treatment, my husband almost fell for my attempts to run away to the beach. i will have to say that going there for my first treatment was one of the most terrifying experiences in my life- so far, anyway. the fear of the unknown, and the fact that i was aware that the first dose of chemotherapy is the strongest. it is the largest dose that they can give you,basically, that will save your life without killing you. your immune system is strongest before your first dose, of course. but no one is quite sure how anyone is going to react to the chemotherapy. my oncologist did reduce my dose slightly as we went along, and i knew what side effects that i would experience. that made the experience a little less terrifying.

oddly enough, and i am not the only person to experience this, i get nauseous when we pull into the parking lot. i had a lot of trouble with nausea and vomiting with my chemotherapy, and that all comes back to me, i suppose. another thing that bothers me, and this is sort of strange, is the smell of the hand sanitizer soap that the center uses. it is a violent reaction for me. i smell it when we come in the door, and of course i have to wash my hands a couple of times ( small bladder) before i get to leave the center. i am nauseous for  the rest of the day, and even though i shower when we get back home, i can smell that darned soap for a day or two.

also today, i saw a woman that reminded me of myself during my treatment. she was very pleasant (put on a happy face for family and friends) and she told the receptionist that she preferred wearing head scarves instead of wigs. that was me, as well. i learned to tie head scarves from watching a you- tube video, and got rather good at it. i did have some pre-tied scarves, but i much preferred tying my own. i wanted to go up to her and give her a hug, and ask her how she was really doing. but since  i did not want to scare the poor woman,  i just smiled at her.

so the bottom line is that i had a good check up. i did not get all of my blood work results today, but i am not expecting any problems. they will mail me a copy of everything in a few days. i keep a record of all of my tests, procedures, etc, in a three ring note book. that is about the best piece of advice that i can give anyone facing serious health issues. be informed, and know what has happened, and is happening to you. i have amazing doctors, but i am not their only patient. occasionally, test results have been lost, but i have had my own copy and that has actually come in very handy on more than one occasion.

my husband told me today that i will now  be " back to normal"( i should say my new normal ) for about the next five and one half months. then, the test anxiety, nausea, and moodiness will return. that said, i am getting a little stronger, a little tougher when test time rolls around. i guess i do get a little bit closer to feeling fine.


Thursday, February 15, 2018

the long and winding road, or AKA, the results blog...

i had my big 6 months thyroid cancer check up on february 7th, with my endocrinologist in raleigh. i had the blood work done at a lab in boone,  the week before that. it was not quite the check up i was expecting, because either my physician had forgotten to check the box to test for thyroglobulin, or the lab forgot to do it, or did not see it on the sheet,- who knows. to refresh, thyroglobulin ( his friends know him as TG), is a protein  only secreted by the cells in the thyroid gland. no other type of cell can make this. so if you have had thyroid cancer, and your thyroid gland has been totally removed and sent to wherever they send those things to, theoretically you should not have measurable TG ( we are friends now) in your body. UNLESS, some thyroid cancer cells managed to  escape the jedi fighter, AKA, radioactive iodine, or RAI-131 as his friends call him. these thyroid cancer cells can set up shop elsewhere in the body- being especially fond of the lungs and bones, bless their hearts.

for the first three or so  years after my surgery and RAI-131 treatment for thyroid cancer, i had measurable TG. i also had anti-thyroglobulin antibodies ( AKA, TgAb). not to get too technical, but those people with the TgAb, are most likely to have an auto immune type of thyroid disease. having TgAb is not a bad thing ( they are not harmful to your body ), but unfortunately it makes the test for TG very unreliable. it was a gamble. do i really have elevated  TG or is the TgAb just making it appear so? no way to tell, folks. since i had two types of thyroid cancer, papillary, and an aggressive form called follicular variant, my endocrinologist decided to err on the side of caution. she kept my thyroid medication on the high side( low TSH, and  higher range T4)  so that hopefully there would not be any  stimulation of  any TG that may or may not be present. my lungs and bones appreciate my endocrinologist's efforts.

now to the important stuff. i received my test results today from the TG test that i had to have done in my endocrinologists office. yes, two rounds of blood work this time. i do not have TgAb, and my TG is low. not quite undetectable or zero, but low. that means that i am still on the every six month plan. i will be an eight year survivor in may. i really do not like using the term " survivor". one could make the case that no one really beats thyroid cancer. life long monitoring, testing, medication adjustments to get the TSH, T4 , T3, etc. correct enough so that a person feels well, but also at correct values to keep recurrences down is the norm. but despite that, i feel that this is good news and i am pleased with my overall results.

on february 26, i will have my big six months breast cancer check up. i am so looking forward to march this year...

Sunday, January 21, 2018

the importance of our pets- especially when one is dealing with cancer or any other chronic health condition

what i have to say in this blog is not ground breaking news. there have been many studies about the efficacy of service animals for those of us  who are dealing with PTSD, epilepsy, cancer, or other chronic health conditions. in certain instances, of course, professionally trained service animals are necessary. but i think that our family pets can play a huge role in helping those of us who struggle with anxiety, depression, or other problems that are  associated with the trauma brought on by certain health conditions.

i will use myself ( again) as an example. when i was having chemotherapy i had terrible nausea and vomiting that was not controlled by any medication that i was given. and believe me, i have tried all of the anti-emetics on the market. i have mentioned that listening to classical music, especially rhapsody in blue by george gershwin, helped take my mind off of the nausea to some extent. what also helped me was the love and affection that i received from my cat and dogs. my cat was especially helpful. for whatever reason, and you can read many theories on this, my cat always  knew when i was sick. she would lie on the bed with me, and snuggle up to my leg or hip. she was not one of those " in your face type of  cats", but her presence and gentle purring were very comforting to me. petting a cat or dog is supposed to decrease your blood pressure, i have read.i am not sure of the validity of that statement, but i do know that when i petted my cat, she would give me little cat kisses with her rough little tongue. having her with me, especially when my husband was at work and i was alone, was very comforting. not sure if my blood pressure went down any, but having her there was very soothing to me.

my dog- a german shepherd- has also been so important to my mental health. again, during my chemotherapy, he stayed extra close to me. when i was able to get up and about, we would take short walks together and he seemed to know that he had to be by my side and be on  his best behavior. i named my dog "shadow" and that is exactly what he has been, and still is. our dogs sleep inside our house  at night. i can walk into the kitchen, thinking that shadow is sound asleep, and if i look over at him he has one eye open- following my every move. there is nothing quite as good as a big ole dog hug. he used to be able to sit in my lap, and sometimes he forgets why he can not ( he weighs 120 pounds). but hugging and petting him helps me as much as it helps him, i think.

another thing about a pet is that they never ask questions, such as" why aren't you feeling well? why are you sad? why are you anxious? why are you in bed? why are you bald?" they also do not care if you are in your PJ's and a robe, you are beautiful to them.  pets are truly living in the " no judgment zone" and they give you their full and complete affection. our pets seem to instinctively know when we  are sad and need a hug, a kiss, or an affectionate rub on our leg. also, i was happy to have my dogs and cat to take care of. just the simple act of feeding them made me feel good. so many people were taking care of me- it was good to have someone else to care for.

having a pet or pets is a lot of responsibility. i guess that it is not for everyone, or perhaps is not practical for some people to have a pet. but i can honestly say that i am so thankful for my pets. they have shown and continue to show me so much love and affection. they help me with my anxiety ( testing anxiety , fear of a possible  recurrence,etc) and for that i am very grateful. there are many " non drug" treatments for certain health disorders. one of the best ones comes with four legs and a big heart. 

Monday, January 8, 2018

" say, here i am, on a road again, there i am, up on the stage,..there i go, turn the page...and you don't feel much like riding, you just wish the trip was through." lyrics from "turn the page" by bob seger

yes, i have used these lyrics before. but it is almost testing time again for me, and these lyrics just suit my situation so well. i have blood work due in a couple of weeks, and a visit with my endocrinologist for evaluation of my thyroid cancer. i also have an appointment with the oncologist, for the breast cancer,  and more blood work sometime this month or next. the problem i have with my oncologist's office is that they never tell me exactly when my appointments will be. the office just mails out my appointments, already scheduled, and i have to juggle them around events that i may already  have planned. maybe even fun stuff that i have to reschedule. sometimes if i call my oncologist, the office will tell me when my appointments are, providing i do not call too soon. i think that i will call tomorrow and try to extract that information from the receptionist. i did bring her a box of candy one time...

the subject of this blog, and i know that it might have been  unclear at first, is testing anxiety or "scan anxiety" like it is sometimes called. i have not yet learned, and i wonder if i ever will, how to deal with this. on the one hand, i appreciate the care that my doctors provide to me. i know that my chances of survival are better the earlier a recurrence is diagnosed. i also realize that by having had two primary cancers, my chances of a recurrence are somewhat higher. i can manage to enjoy my life pretty successfully until it is time for testing. i will admit that i do panic somewhat when i have a stomach virus, upper respiratory virus, or other acute illness. one of my first thoughts, and i am admitting it here in this blog, as i usually try to keep these thoughts  to myself ( i hate for my family and friends to think i am neurotic, ok, well, too neurotic) is to wonder if my cancer is back somewhere else in my body.

a few days before my testing, i get testy. i get  short tempered and very anxious. what will i do if it the cancer returns? what do i tell my family and friends? how will they handle the news? and so forth. and physically my body reacts in a negative way,too. my blood pressure increases, my sleep is off, and as i said, i get anxious. i have tried to do self care or holistic care to try to manage my test anxiety. this is not an easy task for me. i will give you a little background. when i was pregnant with my first child, my husband and i attended lamaze classes. we did the " woo-hoo" breathing, but along with this, we did relaxation exercises. our instructor told me that  i was the " least relaxed" person that she had in the class. i have not made much progress since then, and it has been about 30 years. i have been working on breathing exercises and meditation. since i know how to breathe, this has not been too hard. however,  so far, meditation has not been successful for me.

i have really enjoyed my candle making and a few other crafts that i have become involved with. i feel very fortunate to have the opportunity and time to invest in my hobbies. this is a joy for me, but when testing time comes around, even these activities do not trump ( sorry to use that word)  my anxiety. i read in a blog that another cancer patient struggles with testing anxiety, and i am sure that many other  cancer patients do as well . in  the most recent blog that i read about testing anxiety, the patient had conflicting feelings in the " in between times" as well. not only did this person have the testing anxiety for a few weeks leading up to the tests, but they worried about issues that face us when we are not being tested. the patient felt like an " all clear" scan and blood work were just temporary reprieves from the worry that comes in 3, 6 or 12 months, whenever the next testing is due.

it was good for me to read this blog from another cancer patient. i used to think that something was wrong with me when after good results, i did not feel like celebrating over much, or shouting my results from the rafters. the testing and scan anxiety ebbs and flows. that is what constitutes my daily living now. i try to make the best of things, here comes pollyanna, but i still have to deal with the testing anxiety and the "what ifs" in my life now. i hate to use this over-used term, but this is my " new normal" life now. i am trying to be happy and make the best of things. but here i go, on a road again.

Wednesday, January 3, 2018

i am a pollyanna kind of person, but even i have those times when i feel like throwing rocks at the moon...

i have never been into making new year's resolutions. i have thought about my " goals for the new year" on occasion, but nothing so formal as a resolutions list. this year i have unfortunately had some flashbacks to my surgeries from two years ago. why now? i am not sure. i suppose at first, i was just happy to be alive with a fairly good prognosis. there was so much to think about, that i sometimes did not think about certain things at all. not that i did not have my moments, you might say. one of the first things that i did when i got home from the hospital, was to round up all of my pretty lace bras and throw them in the trash. i was angry and sad that these did not fit any more, and frankly i did not want to ever see them  again. i also went through my closet and tried on a few tops, sweaters and blouses. i gave a huge part of them away- to my family members or to  the salvation army. when i tried certain clothes on it was so strange to discover that the clothes that fit so well just a little while ago, now did not fit well at all.  it was  like i was wearing someone else's clothes. in some ways, i guess that i was.

for the last couple of days, feelings of loss, sadness, and the details of the  surgeries that i had, have come to my mind unsolicited. i am not what i would call a "crier", but tears have also found me, and at the oddest and most inconvenient times. i have tried to tell myself that these feelings are O.K., but i do feel guilty about having them. one thing that i have always told myself, is that there are lots and lots of people who have health issues that are worse than mine. being in health care, i saw people  with severe health conditions who handled them with dignity and grace. i have really tried to do that myself. as i said in my title, i have always been a pollyanna type of person. when i was a little girl and would get sick, i told my dad " don't worry, i will feel better tomorrow." my dad always liked this, and he would remind me, when i got older,  what i had said as a small child.

we are all different, and we all handle health issues differently. it is not a contest to win or lose. what really bothers me, might not bother someone else and vice  versa. i think that it is time for me to throw some rocks at the moon. i know, of course, i am not going to hit the moon, but it might just make me feel a little bit better. away with you, pollyanna, at least for a little while. for now, i am gathering up a few stones.

Saturday, December 23, 2017

" oh, i get by with a little help from my friends, gonna try with a little help from my friends.." to paraphrase the beatles song, " with a little help from my friends"

i read an article the other day in a popular thyroid blog about identifying those people who have helped you, as a thyroid patient, deal with health issues and challenges over the years. most of you who are following my blog know that i am a thyroid cancer survivor AND a breast cancer survivor. as i have said before,this blog is a kind of  "2fer" you might say. i have given this a lot of thought, and would like to acknowledge my own support staff. the author coined a particular phrase for these people, which i am not going to use. instead, i will just refer to my support staff as " my people". this is an old, southern mountain phrase, usually referencing folks that one is related to. but in my case, i consider  these wonderful people to be  my family, even if we are not related.

so here is my eclectic list of people who have helped me survive and thrive after having had  cancer twice. most are living, some are not ( i did say eclectic), but i owe a debit of gratitude to each and every one of " my people". without your love , support, knowledge, and care i would not be here today- that i am sure of.

1) my husband, jeffrey smith. he is without a doubt my number one fan. he has taken care of me during my worst moments, told me i was beautiful when i was as bald as a bowling ball, and still  picks me up when i fall. he has had to deal with the "dark side" of cancer- when i was not smiling with a pretty head scarf and make-up on. it was also helpful that he is a pharmacist,too, and was working at the time of my illnesses. he filled my prescriptions and brought them home to me . what service! i know that some people can not handle the pressure and challenges that come along with a close family member having cancer . he was, and still is, there for me every single day. i can not thank you enough, sweetie.

2) my children. they are grown with families of their own, but they will always be my children. my daughter, shelley , lives fairly far away, but she still calls every day to check on how i am doing. after my thyroid cancer diagnosis, she compiled a mixed CD for me. " songs to get better by", you might say. it contained songs like " i will survive", " i won't back down", " touch of grey", just to mention a few. also, she is a teacher, and her students all made handmade get well cards for me. that touched my heart as well as my tear ducts. i still have all of the cards, and always will.
my son, dylan , and his family, live close by. on several occasions, he drove  over to check on me- especially when i was having trouble after chemotherapy and jeff was working late. he has a young family of his own, but he would always make some time for me. his daughter was born a month after i finished chemotherapy, which was such a gift to me. his son, who was in daycare at the time i was having chemotherapy, and his fellow friends in daycare made cards as well. the children, thanks to juju and paw paw, called me one day to sing " you are my sunshine" as well as other sweet songs. my tear ducts got quite  a workout that day as well.

3) my endocrinologist, Dr.  Shawnee Weir, of raleigh endocrine associates in raleigh, north carolina. she has been my doctor for years. previously,  i had such a difficult time getting someone to realize that i had a thyroid disorder and actually try to help me! my blood work looked normal, but i certainly did not feel normal. she believed me when i told her how badly i felt. she is a physician who goes by how the patient is feeling and not just by the blood work. it was a hallelujah moment when i found her~ she actually did my biopsy and diagnosed my thyroid cancer. i still see her every six months of course, for follow up blood work and testing. i credit her with saving my life- seriously.

4) Dr. Kenneth Parish , my general surgeon, and Dr.Steven  Siciliano, my plastic surgeon. both of these doctors practice in Hickory, N.C.  and  are another "2fer" you might say. they like to work together. some people wonder why i did not go to a bigger hospital in a larger city for my bilateral mastectomies and reconstruction. honestly, i do not think that i could have had better doctors for this, and it was fortunate that they are close to where i live. that made it easier for me as well as my family. Dr. Parish has officially released me, but i still see Dr. Siciliano.( my husband says it is because of my white chocolate chip and macadamia cookies that i bring to him when i have a check up).  i was on a six month schedule, but i have graduated to yearly check ups now.

5) Dr. Richard Orlowski, an oncologist and hematologist, who works with Carolina Oncology, in Hickory, N.C. again, i do not think that i could have had a better oncologist- even in a larger medical center. he listened to my concerns, discussed chemotherapy treatments before i had them, and did his best to prescribe anti-emetic drugs for me - even though nothing controlled the nausea and vomiting that i had. i still see him every six months for blood work and check ups. he has prescribed the drug called anastrozole - a type of chemotherapy that helps prevent breast cancer recurrence. i have every confidence in his treatment choices for me.

6) Dr. Chandra Baker, radiologist, practicing in Hickory, N.C. i think of  this doctor as  my angel doctor.  she also saved my life, this time from the breast cancer. i had had two different radiologists look at my x-rays and remark that there was an  area that looked " suspicious". that was as  far as they went- they were not worried about it, i guessed, so i should not worry, right? WRONG. Dr. Baker took one look at the x-ray, on the day that  i was supposed to be having a lumpectomy, and said, " that area looks suspicious! with your permission, i would like to cancel your lumpectomy today "( the OR was calling, multiple times, to try to get me up there- the medical support staff as well as  the surgeon were past ready for me). she wanted to do  a stereotactic core  biopsy. her exact words were : " i treat my patients like family and i have to be able to sleep at night". i had just met this doctor. she usually practiced at the other hospital in town. she was filling in for someone that day at the hospital where i was to have my surgery. long story short- i trusted her, she did the stereotactic biopsy, and found another area of cancer that would not have been removed with the lumpectomy. this doctor is my hero, and i think of her often. we need more doctors like her.

7) george gershwin, composer extraordinaire.  bear with me- it gets a little weird here. during my chemotherapy, there were nights when my husband had to work late and i was by myself. as i mentioned, i had the absolute worst nausea and vomiting and none of the drugs ( and my doctor tried every one available) helped. what did help to some degree, was to listen to gershwin's "rhapsody  in blue" as well as some of his other works. i would lie on the bed, try to remain calm, and let myself ride along with the music when the waves of nausea hit. i know that he certainly did not write this beautiful music for me, but i love his music  for the comfort and calm that it brought to me.

8) beth stout- sister and friend. my sister helped me out as much as she could. when i was going through chemotherapy and my husband had to work, she would come and sit with me. she carried on the traditions of our dad, which was the power of a good cold wash cloth. as i pretty much just laid there on the bed, trying not to be sick, she kept up her end of the conversation, and then some! i really appreciate all of her care, love and concern for me during this time. i owe her a debt that can not be repaid.

9) numerous friends- too many to name, but i will mention a few. amy- my breast cancer buddy, karon- another breast cancer buddy, and becky- a thyroid cancer buddy. no one, not even family members, understand how it is to have cancer  or" get it", like another cancer patient. these ladies were and still are supportive and loving friends of mine.

10) last, but not least, is mary shomon, author and patient advocate. we have not always shared the exact same opinions on thyroid treatment issues, but mary was so kind to mention my blog on her website. from that moment on, i was connected with other thyroid cancer patients. i live out in the " boonies" and support groups in my area  are pretty non-existent. having people read, what started out, as a thyroid cancer blog, share stories and offer support was very important to me. i have tried my best to help others- to pay it forward, you might say.

well, those are " my people" who have helped me survive and thrive during my adventures with  thyroid and breast cancer. in my opinion,  it is a good idea for others to make a list like this, i think. for me, i knew the names of the  people in my life who had helped and continue to help  me, in countless ways. but actually writing their names down reminded me that i have had and continue to have  great support. i am not alone on my journey, and for that, i am grateful.

Thursday, November 30, 2017

thyroid cancer is not the " good cancer" and here are some reasons why...

if you have been diagnosed with thyroid cancer, you have probably heard people say, " oh, you have the good cancer!". this response, though well meaning i think, is still one of my pet peeves. first of all, there is no " good cancer". cancer by definition is not a good thing. any type of cancer is serious business, and should not be taken lightly.

i received my thyroid cancer diagnosis in 2010. i had papillary with follicular variant, stage three. after having my thyroid and two parathyroids( also cancerous) removed, i received the I-131 treatment because  even the best surgeon can not get all of the thyroid cancer cells. think of them as little storm troopers who escape from the mother ship and make their way to other parts of the body. one way we know that they are present is by doing blood tests for thyroglobulin and thyroglobulin antibodies. only thyroid cells make thyroglobulin, so if you destroy the mother ship, and you have measurable thyroglobulin in your blood stream, that means that you have the rogue cells, or thyroid cancer cells elsewhere in your body.

for three years after my surgery and treatment for thyroid cancer, i had measurable thyroglobulin and thyroglobulin antibodies. there are a couple of ways to deal with this. some people, depending on how high the level of thyroglobulin is, have to receive another dose of the I-131. unfortunately, this does not always work in all cases . the I-131 is supposed to destroy the rogue cancer cells. one way to explain it, is that thyroglobulin cells love iodine. if you " feed" them the radioactive kind it is supposed to destroy them. another way to deal with the presence of measurable thyroglobulin is to keep the TSH very low- close to zero. what TSH (thyroid stimulating hormone) does is to stimulate thyroid cells into action. this is fine if you do not have cancer. but if you are stimulating CANCER thyroid cells into action, well, it is obviously  not a good thing.

as i said, after three years my thyroglobulin went down to an "acceptable" level and my antibodies were no longer present. my last blood work revealed that my thyroglobulin was less than 1. the range that this lab uses is " less than 1 is acceptable, 1 or greater is positive for thyroglobulin.". so, my level is low, but not zero. what the heck have those rogue thyroid cancer cells been  doing in my body for the past seven years? my doctor keeps my TSH near zero so that they do not spring into action, so to speak, but that still gives me pause. i continue to  get blood work and ultrasounds every six months. once you have had thyroid cancer, you basically have testing for life. there is no " five years and you are done" to this type of cancer. for those of you who have been thinking that thyroid cancer is the good cancer, are you beginning to see how this is not the case?

if thyroid cancer is able to spread to other body locations, it is most often to the lungs and bones. it can go anywhere, but those are two primary locations. when i had breast cancer in 2015, one of the first questions i asked my doctor after the surgery was " were there thyroid cancer cells present in my breast tissue?". i am happy to say that  there were not. 30% of thyroid cancer patients will have another primary cancer in the body, and i fell into that category. the best thing that you can do in this situation, is to make sure that you have your mammograms, colonoscopies, and other tests on a regular basis. early detection is key- as with any cancer.

thyroid cancer affects all age groups, male and female, though there is a higher incidence in females. there are several types of thyroid cancer, and a person can have more than one type, as i did. this is hardly a good cancer to have. life long testing, the possibility  of recurrence, or an increased chance of   developing a second primary cancer are all part of having thyroid cancer. as with most any other disease, a person never really understands until it happens to them. i like to be connected with other thyroid cancer patients. no one understands our situation and daily challenges like another thyroid cancer patient.  no, this is not the good cancer at all...

Tuesday, November 28, 2017

" I've looked at life from both sides now, from win and lose and still somehow, it's life's illusions i recall, i really don't know life, at all. " both sides now, by joni mitchell

it all started with a doctor's visit. one that i wish i had never made, but at the same time,  eternally grateful that i did. this is the way that it has been for me since i received my two cancer diagnoses. i possess two faces of cancer. there is the one that i present to the world- upbeat, optimistic, totally in control of my situation. and then there is the other one, and it is not very pretty. i struggle with PTSD, anxiety, and a general feeling that i am not in control of anything in my life. feeling out of control has probably been the hardest thing for me. i like things organized, well planned out, and safe. cancer makes your life anything but those things. in my work, i was used to being in control- making difficult decisions on a daily basis. i was responsible for not only what i did, but what my support staff did as well. i had the lives of my patients in my hands, and while it could be  daunting on occasion,  over time  i developed a sense of confidence in what i was doing.

cancer has a way of stripping away  all sense of control that you thought  you had. where i was once the one making the decisions about someone's health, i was now sitting back and becoming the patient. i was listening to the recommendations of several doctors concerning my health. and they were not just any decisions, they were life or death ones. of course i did my research on what surgeries, treatments,etc. that would be best for me, but when it came down to it, i had to depend on health professionals to make the calls. i am very fortunate to have had very good medical care. i realize that unfortunately not everyone has this opportunity, and i am grateful that i did. i also have a wonderful support system in place. my family and friends have given me so much encouragement and care, and i am extremely grateful for that, as well.

i am learning that it is o.k. to have conflicting feelings when it comes to having cancer. maintaining a positive attitude certainly helps me as well as those around me. but it is important that i address the dark side, if you will, of a cancer diagnosis. loss of control, overwhelming feelings of loss- not just physical loss, but loss of the way my life was before i had cancer, always loom in the background. while i am fairly sick of the term " my new normal", nethertheless, it is a true statement. i do have a new life now, in many ways. i retired a few years earlier than i had expected to. i found that while i could do my job as i had before, it just took too much energy. i had trouble recovering from a day of work- i was exhausted after a 8 to 10 hour day and it took me two to three days to recover. i do miss my work, and the people that i worked with and for. i was angry about this for a while. again, it was a loss of control issue. my careful life  planning had just gone down the drain.

i am a " i will do it myself" kind of person. it was difficult for me to accept help from others. not that i did not appreciate kind offers, i just was used to being more self sufficient, and it was, and still is, difficult for me to admit that i need help sometimes. one terrible example of the dangers of always  doing things yourself, was when i made my first trip alone to the grocery. ( here is another awful grocery experience). my husband was working that day, and i was determined to go out myself and get our groceries. that would have been fine, but instead of waiting on my husband to carry our groceries inside, or maybe being patient and making 100 trips carrying the grocery  bags inside, i carried them, even the heavy items, in just a few trips. i felt my stitches give way on one side before i got inside the door. i knew that i was in trouble, but i  could do nothing about it at this point. long story short, i ended up with an extra surgery and a round of antibiotics  to repair the damage. this ended up delaying my last surgery for reconstruction, and my surgeon said that i was very lucky things were not worse.

i have had to make a major life adjustment ( i will refrain from using "new normal"). i have discovered the joys, albeit different than my previous work , in making candles and other crafts. i am enjoying time with my husband. we have both, in the past, worked long hours, holidays, weekends,etc. so this is a treat to get to spend more time together. i am so happy to get to see my grandchildren more often. i like to be able to help out with childcare or just visit, more often. this is definitely a silver lining in my dark cloud. while my anxiety is still there,  i am managing those dark feelings a little better now. as i said earlier, i am trying to maintain a positive attitude. but i am also dealing with a dark side,too. i suppose the trick is to not to let the dark outweigh the light, so to speak.