Wednesday, December 28, 2011

"..this is how i roll, animal print pants out of control....look at that body, look at that body, look at that body, I WORK OUT!! . ... I'M SEXY AND I KNOW IT!....when i walk in the spot, yeah, this is what i see, everybody stops and they staring at me.... i ain't afraid to show it, I'M SEXY AND I KNOW IT!". "sexy and i know it" by LMFAO

i had a wonderful visit with my grandson, gabriel. and my son, daughter-in-law, daughter and son-in-law, but by golly when gabriel left today, i took off my grandma jeans and put on my fitness pants! they fit me like a glove- black and so comfortable. i got them from LL bean if anyone is interested. i am proud to say that when i started working out, i had to get a size  large. now i am in a medium!! yeah. this is a milestone for me. i think that  i will probably stay in a medium( which is o.k. with me) , but you never know, i could manage to get down to a small at some point, in a galaxy far,far away.

so, my daughter and son-in-law got to stay an extra day with us. naturally shelley and i headed up to my zumba class. the absolute best zumba classes that i have ever taken  are the ones that  i get to go to with my daughter. i have been to about 4 classes near where she lives, and she has been to about the same amount of  my classes. we laugh and cut up a lot, i can tell you that. my instructor says she likes to see my daughter come because she has so much energy. she energizes our class, you might say. i am amazed at how well my daughter can do the routines. it will be a new dance to her, and somehow she ends up doing it better than me( and i will have done it several times before). it really does not bother me,though. this grandma can shake the coins on her belly scarf pretty darn good!

my husband has said many times  that me getting sick was good for both of us, in some ways. our nutrition improved, and we started getting regular exercise. we both have lost weight, which is good. of course, we have to hit the advil bottle after we get back home from the wellness center. and we always  drink plenty of orange juice to prevent night time leg cramps. but all and all it has been great. why did we not do this before? hopefully, we can benefit from the changes we have made. at any rate, it is fun and that is the whole secret. if zumba was not fun, i could not make myself go every week. besides, where else can a 50 something grandma dance around to " I'm sexy and i know it" with a (sort of) straight face?

Sunday, December 25, 2011

seasons greetings!

i would like to take this opportunity to wish everyone out there a Merry Christmas, Happy Hanukkah, happy Kwanza,  and so forth. during this busy time of the year, i know that  it is hard to make time to stop and be thankful for your friends and family. but that is what i am doing this year. losing my dad this year was so hard, and memories of past Christmases keep surfacing at the strangest times. sometimes i laugh, sometimes i cry, but i am thankful to have had my parents for as long as i did. while  i wish that i could have had them longer, i am lucky to have had a wonderful relationship with both of them. we were always together at holidays, and i talked to them almost every day, and towards the end, i saw them several times a week.

last week, i had another squamous cell carcinoma removed from my other leg. that makes three so far. now this is nothing as serious as  melanoma, and i do not have to do anything further as far as treatment goes. this one was about half the size of the other two. my dermatologist said, " good eye, bea, you are getting good at this!". well, i really do not want to get good at finding skin cancers on my body, but i am trying to be proactive and take care of myself. this is just another reminder, as if i needed one, to try to enjoy life, appreciate my family and friends, and try to take care of myself. i do not want to put my family through the pain of losing a parent/spouse.

i hope that everyone out there is taking the time to get some rest ( we cancer survivors need that at all times of the year, but especially now). enjoy the little things- watch holiday movies, pop popcorn, play a board game with your family. probably there is a whole generation out there who has no idea what board games are. imagine, no batteries or game system required! last year for Thanksgiving, our power went out for several hours. my grown children were all visiting, and they were scattered all through the house. my son was playing video games, my daughter was watching TV, etc. when the lights went out, everyone gathered in our kitchen. we had found an oil lamp, and my husband made a fire in the fireplace. pretty soon, my son was entertaining everyone with a funny story. we laughed and laughed that evening. it was one of the best Thanksgivings that i have ever had. ( i will have to admit that we did get our dinner in before the power went off).

i hope that no one  loses their power over the holidays , but i do hope that you can find the time to be together as a family. appreciate this time and hold the memory in your heart forever. that is my Christmas wish for all of you!

Thursday, December 15, 2011

All i want for Christmas is a nap!!

is everyone as exhausted as i am? this time of the year is so much fun- so exciting, so many things to do. but it is so hectic. along with work and our "regular chores" we have so many extra things to do. i love shopping( to a point, that is). i have to admit that LLbean ,amazon.com, and a couple of other places are some of my  best friends. just point and click! free shipping, no waiting in line at the mall and best of all, i can shop in my pajamas! i am finding out that the older i get, the more i shop on line. i am proud to say that i have never, ever been shopping on black friday( too scary for me). frankly, i have never seen anyone offer savings that are  worth risking life and limb.

as usual, i am behind in most things" Christmas". i have not sent out Christmas cards, or wrapped any gifts yet. my house is decorated though- inside and out. my husband wants to have an open house for our neighbors sometime next week. the thought really terrifies me! i have to decide soon,though, so i can send out invitations. it would be a casual drop-in kind of thing. of course, i would have to cook. i love to cook, but i am not sure that i could get everything ready in time. sometimes i really wish that i could borrow martha stewart for a day or two. but i get tired just watching her show sometimes. where does she get the energy to do all those crafts? and making your own chocolate chips for chocolate chip cookies? really?

 i will probably have my neighbors over.i have wonderful neighbors, and it is nice to get together during the holidays and chat a bit. so...... nobody will think that martha stewart catered my get together. and someone  just might spot a dust bunny somewhere in the house. hopefully, i will be able to remind myself that the fellowship is the important thing, and not homemade chocolate chips. and i have ten days...no, make it nine, to get all of my Christmas stuff done. i sincerely hope that all of you are enjoying the holidays, not overdoing things, and maybe, just maybe have time for a little nap.

Saturday, December 10, 2011

Welcome to the world, Gabriel Robert!!

i have a brand new grandson- my first grandchild! he was born on saturday, december 3rd at 1:16pm. i was at work( of course) but the next day after work, i had the car all packed and my husband and i headed on down to the hospital. he lives about 4 hours from us. i wish that  it was  not so far, but i am not going to let that slow me down. i got to spend the night, and we got to see them( they checked out on monday) for most of the next day.

he is so beautiful! dark hair, and dark blue eyes. the pediatrician told my son  that gabriel's  eyes would probably stay dark blue( they are the same color that my husband and daughter have). he has my son's nose, and my dad's large hands and fingers. my dad had strong hands and it makes me happy that gabriel will,too.  my son and daughter-in-law used robert- after my dad- for his middle name. i think that is just so sweet. the only thing that he got from me, that i can tell so far anyway, is my unfortunate habit of hiccuping at the drop of a hat! wow, what a thing to pass on to a little one. evidently he hiccups non-stop, several times a day. i know babies do this, but my babies did not do it quite as much as little gabriel does. hopefully, in a little while, the hiccuping will abate a little. i thought about slipping him some cola syrup( works like a charm), but when i mentioned it my daughter-in-law looked a little horrified. i told them to check with the pediatrician, of course, since he is so little.

the first time that i held him was at the hospital. he was a little fussy by the time we got down there, so he cried. i was afraid that he would cry every time that i held him! what if he did  not like me or something? but the next day, i held him a lot and he did not mind it- in fact, now  i can get him to go to sleep pretty easily, unless he is hungry of course! he needs his mom for that( she is breast feeding). i am so proud of my son- i love to look at him looking at gabriel. and he jumped right in there and has changed as many ( or more) dirty diapers as my daughter-in-law. i can tell that he is going to be a wonderful, " hands on" daddy.

the Christmas season has been sad without my dad. and of course, i have wanted to call him with news of gabriel. there are just so many things that i would love to share with my dad. we talked every day, and of course, he always stayed with us during the holidays. but gabriel could not have come at a better time. that little seven pound bundle of joy has really lifted the spirits of everyone in our family.

Wednesday, November 30, 2011

Welcome back, it has been a long time.......

i have been grieving. try as i might, i could not force myself to write in my blog because writing this is a joyful experience for me. i have not been able to experience any joy, really, since my dad got sick- on august 14th, and try as i and all his doctors might, passed away on october 10th.

my dad was a wonderful person, to me and many others. he was in excellent health, and drove where he wanted to go- mostly, and lived his life as he chose to- visiting his friends, attending his church, visiting my sister and me, and of course talking to and visiting his beloved grandchildren.

he was never worried about himself. after mom passed away a couple of years ago, he told us that he just wanted to spend whatever time he had left with his family. before he passed away, i was able to tell him that my full body scan, ultrasound and blood work all were negative. he told me that the news i am cancer-free really "eased his mind".  i did not tell him that i have to go back for ultrasounds and blood work every six months, since my cancer had spread a bit. i did not want to worry him. speaking of worry, i asked my endocrinologist if i am cancer free in five years am i "home free"?  she said not necessarily- she had a patient just last week, who after SEVEN  years had a recurrence of her cancer. oh, well, you know what? i am not going to worry about that. i will get my tests done, but i have a stronger sense of what is important and the even more urgent  need to live my life to the fullest. my dad was 85, but did not look a day over 70. he walked a mile and a half every day, and was ( so we thought) in very good health.

the thanksgiving holiday was difficult. but i urge everyone who is dealing with the loss of a family member to consider spending the holidays in a different way. in the past, i always cooked dinner, and my parents, and later just my dad, along with my children and their spouses, came to my house. my dad would spend  a few days with us. this year, our family had thanksgiving at my daughters house. we spent wednesday night with her and her husband. oh, and wednesday night- even though we probably should have been cooking- we went to zumba. it was the class she goes to at the honky tonk bar. i have to admit that i had fun. i really, really have missed zumba. i have just now gone back, as i am sure my dad would have wanted me to do. yes, it is exercise for sure, but i love it. it is so much fun.( i even purchased a belly scarf- red, of course, for the holidays)

my son and his wife are expecting my first grandchild in december . his name is gabriel robert. robert- after my dad. it was so sweet of my son and daughter-in-law to name him after my dad. my son and i both cried when he told me. i think this is the part of my blog where i should have elton john singing "the circle of life" or something like that. it really is true,though. i am still grieving, but slowly regaining my joy. gabriel will be a big part of that process. returning to my blog, and yes, zumba, will also help.

thanks to all of you out there who have had patience with me. those of you who have checked to see if i have written a new blog, who have not written me off ( no pun intended). i will try my best not to disappoint you. i hope that everyone had a great thanksgiving- spent in a joyful way, giving thanks for our families and friends. giving thanks,too, for our lives and what we make of them.

Thursday, September 22, 2011

P-L-E-E-E-E-Z-E excuse my math!!

it seems to me that some people think that cancer has an awfully lot to do with math. i will give you some examples. for one thing, only 5% of all thyroid nodules are cancerous. if you, like me, are in that elite 5%, that percentage has a whole different meaning( or none at all, perhaps). trust me, when my doctor called to tell me that i had cancer, i was not thinking about the other 95% of the population. i guess that you could say that 95% is an A, and i had just flunked the biopsy exam.

another example is from the american cancer society. according to them, here are the 5 year survival rates for three types of thyroid cancer:

papillary, stage I: 100%. stage II: 100%, stage III : 93%

follicular: stage I: 100%, stage II: 100%, stage III: 71%

medullary: stage I: 100%; stage II: 98%, stage III: 81%

compare these to breast cancer survival rates: stage I: 96%, stage II: 84%, stage III: 52%

perhaps this is why thyroid cancer is known(among those who  do not have thyroid cancer) as the "good cancer". this is another one of my pet peeves. who can call any cancer "good" for heavens sake! since i was diagnosed with stage III papillary cancer, i am in the 93% group. to be honest, that makes me a little nervous. let's face it, it is barely an A! joking aside, i am thankful that i had papillary stage III  and not follicular or medullary. worse still, and i will not talk about this one, is anaplastic .but if you are curious, it only, (thankfully ) accounts for 1.6% of all thyroid cancers. it is a " get your affairs in order quickly"  cancer. by that i mean that less than 1% of people diagnosed with anaplastic thyroid cancer are alive after just two years. sure does not sound too good to me.

i know that these percentages come from years of study and research. i have seen some variation,though, depending on the source. does that make a difference to me? not really. i did not even want to know what stage cancer i had until i was nearing my treatment. how could it have helped me? i think that it would only have discouraged me. when i was ready to find out, i was prepared to "fight" and do whatever i could to get better. being tested for cancer, then finding out that you have cancer is tough. so is surgery, treatment, the  after effects from your surgery and treatment , emotional issues,etc. . i think that it is good to take one step at a time. do the best that  you can do at each level and maintain as positive an attitude as you possibly can. knowledge is power- read all that you can, from reliable sources. but never lose hope. we are not machines. math percentages do not define us. in my career as a health professional, i have seen some  stage I cancer patients die quickly, and some  stage IV patients live a good long life.

hope, faith, love, the will to live- these things  factor into those percentages. and i can say that i am 100% sure of that!!

Thursday, September 15, 2011

" I was born, i was born to be with you, in this space and time. ...Only love, only love can leave such a mark. but only love can heal such a scar. Only love, only love can leave such a mark. but only love, only love unites our hearts. " Magnificent, by U2.

i was heading on down the blue ridge parkway this week to visit my dad. the scenery is just breathtaking. it never ceases to amaze me that i could live in such a beautiful place! first, there is julian price park and their fabulous lake. it just shimmers in the afternoon sun, and is surrounded by beautiful mountains. i usually  almost run off the road looking at the lake as i drive past. then, a little on further down the road, i get to drive across the linn cove viaduct. this was an engineering feat due to the fact that the person who owned grandfather mountain would not allow the state to build a road which would impact his mountain. therefore, the state built a road that literally swings out over the side! you just have to see it to believe it. there  you are, close to the summit of the mountain, and your car is on a road that is just hanging onto  the side of the mountain. on a clear day, i have heard it said that you can see as far away as charlotte,n.c. personally, i  have never seen that far, but the mountains do go on and on into the horizon. and talk about the sunsets- magnificent! i was actually listening( and croaking along to) that song as i was driving across the viaduct. so appropriate, i thought.

i am bringing my dad home from the hospital tomorrow. he has been there for a month, and while he has made progress, he still has a hard road ahead of him. he promised that he would try his best to get better and do the things like physical therapy, that he needs to do to improve. we are hoping that he will somehow get back to how he was before he got sick. but i guess that now he has a "new normal", too. the first week he was so critically ill, i just ran on adrenaline i think. but now, i get so exhausted after a day at the hospital, the four hour round trip commute, etc. lucky for me, my husband has been my best friend through all of this and has gone with me most times and done all of the driving. truthfully, i found it hard to focus at times. i am not sure how much of this is due to my thyroid-less condition, stress, or just the fact that i am getting older. i am not one to complain about that,though. i am so happy to have birthdays- it is the alternative that scares me.

i am glad that i have been able to appreciate the small pleasures life offers. i appreciate the fact  that i could enjoy the beautiful scenery on the blue ridge parkway( next trip i plan to take some pictures- maybe include them in the blog if i can figure out how to do it!).no matter how stressed or busy that we are, we need to make time for the things that make us happy. i am so hoping to get back to zumba on saturday! my sister has said that she will visit dad that day so that i can go. i really miss the dancing- it is so good for me and it  makes me happy. i even ordered a new belly scarf- red(!). i hardly ever wear red( clashes with my red hair), but sometimes i wear it to honor my mother. red was her all time favorite color. so.... if my red belly scarf comes, if we have a zumba class this saturday , if my sister can visit my dad that day, i will get to spend an hour doing something that i love and that is good for me. if none of that happens, then i think that i will go for another drive on the parkway. and take pictures.

Friday, September 9, 2011

" and they knew all the places i needed to go, all of the people i needed to know. they knew who i needed, and who needed me. and who would come help me, and who would just let me be. i was in the hands of angels until this very day. inside the hands of angels, what more can i say?" In the Hands of Angels, by Leon Russell

this is a beautiful new song by leon russell and elton john. they did a collaboration cd recently, and a tour together( i unfortunately missed this). the cd is very good, i think. this song is especially meaningful to me lately. the decisions that i have had to make concerning my dad's care have been so hard. but sometimes, when i would listen carefully, the answer was right in front of me.

the world is constantly blasting information at us all. i try not to watch the news at night- it is depressing and it causes me not to sleep very well. when my dad was first in the hospital, i tried to read a book when he was napping. sometimes,though, i could not concentrate very well on my book and i would get out my smart phone and look at facebook or surf the web.  now, i like facebook, don't get me wrong. i have been able to reconnect with a couple of friends from elementary and high school that i was afraid i would never see again. it has been really nice to chat with them and catch up with what they have been doing. i can see how people, especially young people, get " addicted" to being in touch all of the time. that is a whole blog or two by itself,though.

i wish that i had the patience to meditate. i have tried, several times, maybe not hard enough. but to sit still and clear your mind- without making plans for the next few days,hours,minutes even, is difficult for me.i seem to do better with a plan and a schedule of events. another "good" thing cancer has done for me is to chip away at the feeling  that i have to be in control of everything. i mean, you have to be in charge of a lot of things- especially if you are a mom!- but some things you just have no control over. you have to learn how to just let go and let things happen sometimes. i am constantly having to remind myself to enjoy the small moments of my life. take a deep breath, and relax a little. who cares if the house is messy or you are behind in the laundry? well, o.k. i moan and groan a little about it, but i know that it will still be there tomorrow. that is what my mom always told me. " don't worry about the housework, honey, it will still be there tomorrow." boy, was she ever right about that one.

instead of the "new normal" i have a new,new normal now. i have to somehow find a way to go to work( that one is easy, i guess, i have bills to pay), visit my dad in the hospital,pay his bills, line up health care for him,see my family, oh, and i have sooooooooooooooo missed zumba! i have not been able to go back since my birthday, when i went with my daughter. i keep telling myself that i need to go for my good health, and if i am sick, who will take care of dad? i will make it back soon; next week, hopefully. i did order a new belly scarf last week- lime green- so i hope to have a chance to wear it soon.

i got a call from my doctors office today. my blood work was o.k. i am not sure of the numbers, but i will either get a copy in the mail, or i will request one when i go back for my ultrasound in a couple of weeks. i will admit that this has been the least of my worries,though. oh,jeez, that is another one of my problems. i am a worrier. i am worried about being a worrier- figures. guess i will have to work on that one,too. maybe some meditation will help.....

Tuesday, September 6, 2011

it has been a long time.....

first, an apology to my readers. i have had a medical emergency in my family, and i have not been able to blog for some time( or do much of anything else, to be honest). my dad almost died- he is 85 years old, my only remaining parent( my mom died a little over two years ago due to complications from  a stroke and multiple myeloma ) . i have decided to blog about the importance of having  a medical advocate, friend, loved one,etc. if you are involved in any medical situation. especially if you are in the hospital for surgery, or other treatment that renders you helpless. at the very least it helps to have two sets of ears to try to remember everything  that the doctors and other health professionals are saying. i try to go to my appointments  by myself, but if it is something really important, i bring my husband along to listen and take note of what is being said.

in one of my earlier blogs i said that the day i "got the news" i was at work. it really reminded me of the gary larson cartoon, where the man is talking to his dog and telling her " bad dog, ginger, you got into the trash again, etc, ".  that is what the guy is saying. what ginger actually hears is " blah blah, ginger, blah, blah, ginger". so my doctor was telling me about my papillary cell thyroid cancer, and all that i heard was" bea... cancer,  bea..... cancer". too bad no one was listening with me then.  when i saw the radiologist before my treatment with the radioactive I-131 ( after my surgery) i had my husband with me. good thing, because it was then that i found out that my cancer had spread into my lymphatic system, and two of my parathyroids, and in total i had lost eleven lymph nodes. the surgeon did not tell me this. my endocrinologist did not have the report when i went back for a follow up visit before my treatment . so that left this poor guy, who probably thought that  i already knew those  things, to have to be the one to tell me. i actually looked behind me when he was talking. i thought that perhaps he was addressing someone else in the room.

health care is an inexact science. mistakes are made, situations are mishandled. but it helps to have someone to listen for you when you can not. to make sure everything that can possibly be done to help you is being done, and in a timely manner. be pushy! get second opinions if you have a feeling " in your gut" that things are not right. act on those  feelings because you may only get one chance to do something that could ultimately affect every one's future.

i moved my dad from the smaller hospital, AGAINST  the recommendation of his physician. it was a hard decision for me, but i knew that my dad needed serious help and that he was not getting it at this particular hospital. what they diagnosed as a stomach virus turned out to be a blood clot which was obstructing the major artery into his small and large intestines. the larger hospital diagnosed him( with the same test that the smaller hospital had done) in about an hour. they had him in emergency surgery for over 4 hours. three surgeons worked on him, and his odds for making it through the surgery were not good. but my dad is tough and he is a fighter. several people told me, including the surgeons, that had i not moved him, he would only have lived for a couple of days.

he is on a rehabilitation floor of the hospital now. his recovery has been amazing, but at 85 years old, it is a bit slower than either dad or i would like for it to be. i try to remind us both to be patient. just as soon as he can, i am moving him home with around the clock nursing until he can care for himself. i am not sure how everything is going to work out in the future, but i am glad that i was there for him when he really needed me.

oh, i have not had the time to track down my blood report. my scan was good, as i said, but i am not sure about my blood work. it seems that the report  did not make it to my endocrinologists office.  i called the hospital, where i had the test done, and they said that  i could come by in person and they would give me a copy of the report. the hospital is an hour away from my home, and in the opposite direction of the hospital where my dad is staying. i am not sure when i will get to do this. i have an ultrasound scheduled for September 27th, with my endocrinologist, so it may just have to wait until then. of course i will share those results when i get them. i am hopefully going to be blogging on  a more regular basis since my dad is mostly " out of the woods".

Thursday, August 11, 2011

one down, one to go.....

my doctor's nurse called me today( of course i was at work) and told me the good news. MY SCAN WAS NEGATIVE!! she is sending me a copy of the report- for my records. i am not sure if it will contain any information that will be useful later on, but i am still  going to put it with my other test results. i am not sure if i will have to have another scan done in a year? or later? the nurse was not sure. but at the end of next month, i have to have an ultrasound of my neck. my doctor says that she likes ultrasounds of the neck and blood work( checking for thyroglobulin/thy ab ) because  the few cases that required additional treatment( at least in her practice) were diagnosed that way. i am going to ask her about scans when i see her in september.

the blood work will take a few more days to come back. i am so thankful that she called me with the scan results, instead of waiting on the blood work. i had  the same blood test done just a few weeks ago, so i am not expecting it to be very different. i should not have to go home from work when she calls me, in other words.

i can honestly say, that dealing with the anxiety of testing was the worst part of this process for me. being on the LID was actually good for me- i found out that i am lactose intolerant, and have changed my diet. my stomach is so happy with me now! my voice is a little bit better,too. perhaps the reaction to the lactose in my diet was causing a little reflux and affecting my voice? just a theory i have, but it is possible. with the exception of a little nausea after the tracer dose( again, not sure if it was the medicine or lack of food), and a few needles sticks( one not so good) here and there, the physical part of the scan was not too  bad.

someone asked me if i feel like i have a dark cloud hanging over my head. wow. i am not sure if i would ask a cancer patient that or not, but a good question i guess. actually, i do not- most of the time. i feel a little bit of a cloud when testing time comes around. mostly, i just try to get on with my "new normal" life and try to be happy. that is all any of us can do, really. i have tried to make this into a positive experience- by blogging, changing my lifestyle/diet and just enjoying all of the good things that come my way. it has been a little over a year since my surgery/chemo and i still feel that way. i think that this has changed me forever, and this  is not a bad thing.

so, one down and one to go. i think that i am going to be o.k. now. i will let everyone know when my blood work results come back. until then, you can find me in my zumba class.  you will recognize me because i will be the one wearing a pink belly scarf , dancing my heart out.

Wednesday, August 10, 2011

"the w-a-i-t-i-n-g is the hardest part" you said it, tom

 i think that i got through my scan week pretty well. i was busy- i had to be at the hospital almost every day that week. the only "mini-meltdown" that  i had that week was on a day that i had off. i am afraid that "the what ifs" caught up with me. my former doctor, from duke, said to prepare myself for another round of treatment. o.k. i went to personnel and picked up some leave of absence papers. but truthfully, i do not think that anyone can be fully prepared for another treatment. in a thyca newsletter, it states that "thyroid cancer can sometimes reappear decades after initial treatment." you can do two things after reading that statement. you can: 1) live your life fearfully, negatively, and make everyone who loves you miserable, or 2) live your life in the most positive manner that you can. enjoying life's little pleasures and letting as much joy into your life as possible.

call me Pollyanna, but i choose option number two. i intend to make the very best of things that i can, and hope for the best. really, if you think about it, having cancer can be a positive thing. it has caused  me to  make major  changes in my life- adding exercise, improving my diet, appreciating my family and friends more, strengthening my faith,  just  to name just a few.

waiting on test results is hard, believe me. but i am trying not to worry about things too much. i have no control over what is going on now in my body. i can put good food in, exercise, think good thoughts, but that is really all that i can do. whatever happens, i will just deal with it in the best manner that i can. in the meantime, i will continue to live my" new normal" life, and enjoy it.

a good friend of mine just returned to work yesterday after a serious bout with colon cancer. she also had to have her gall bladder removed due to damage from the chemotherapy.  i called her to wish her a good first day back at work. she said that she was glad to be back at work, and back to her normal life. i said, you mean your "new normal" life? she laughed and said, well, that is true. my new normal life.

in some ways, cancer patients are "lucky". we are given the opportunity to examine our lives and make positive changes. we can improve the quality of our lives- and this influences the quality of our families lives as well. am i glad that i had cancer? HECK NO!! but, i will use this challenge to evaluate my life and do everything in my power to make the best of this situation.

today is my day off. tonight i will go to my zumba class and i will  wear my pink belly scarf, even though i might be the only one wearing one, just because it makes me happy. for that hour and 20 minutes, i will definitely not be thinking about test results or "what ifs". i am taking things one day at a time, and hoping for the best.

Sunday, August 7, 2011

zumba in a honkey tonk bar---- yeee haw!

i mentioned that my daughter took me to a zumba class friday night. she was familiar with the instructor, but had not been to this particular location before. we got ready to go, and my daughter loaded the address into her navigation system. i wish that i had had one of those when i was her age. i got lost a lot. never could read a map well, unfortunately. i have a nav system on my smart phone, which my husband begrudgingly  lets me use sometimes. we won't discuss that issue.

anyway, we drive toward raleigh, and before too long,  the neighborhood began  to look  rather" interesting" . i said, " sweetie, are you sure we are in the right place?" do not ever question a nav system. my daughter's system speaks with a British accent ( my daughters idea) and when the english lady says " recalculating", well it is never a good thing. we continue on our way, and let's just say that i was  glad that  our car doors were locked. i almost jumped out of my skin, when the prim and proper voice announced that we were at our destination. for whatever reason, this zumba instructor had booked a space in a huge country and western bar. we worked our way through the assembly of cowboys who seemed to be guarding the door( perhaps they were anxious about zumba ladies invading their territory?) i am not sure if it was our "deer in the headlights" look, or the fact that we had on dance shoes instead of cowboy boots, but we were quickly ushered down to a smaller- but still huge to me- bar below. there was a stage in front of the dance floor. at the back of the stage was like hundreds of bottles of every kind of liquor you could imagine. since our instructor was late, i said, well, if she does not come, we can all have a drink! the woman behind me thought i was serious because she said, " that might be a really good idea!"

actually, we had four "helper" instructors that took over for about the first 15 minutes or so. i wore my pink belly scarf( i was the only one wearing one). the woman behind me( my new best friend) said she loved it. one thing about having cancer, you tend to do the things you love and don't worry too much what other people think- as long as you are not hurting anyone, i say go for it! the main "helper instructor" was heavily into hip hop music. i bet those cowboys had  never heard that kind of music coming out of their bar before. and i know that EVERYONE heard our music. they had it cranked up so loud, i think i lost a little bit of my hearing in my left ear. the floor actually shook( even when we were not moving)

finally our "real" instructor arrived- in a knee brace. the other instructors helped her a bit, but she gave us a really good work out. i was not going to admit it, but when my daughter said that she was sore the next day, i fessed up,too. the thing about going to different classes is that each instructor has different moves- even to the same songs. so you end up using different muscles. i still prefer my regular instructor at our wellness center-sorry cowboys- but it was interesting to go to a different class.

since our instructor had arrived late, she went over her allotted  time. the bar  manager walked out on the stage and gave us all the "death stare", whispered( he could have been yelling- we could not hear him at any rate) something to our instructor and dosey doed off the stage. at this point, we did our cool down numbers and called it a night. i asked my daughter to please not come back to the bar alone- if she could take a friend, it would be best. i sure am glad we did not do the "save a horse" song.

as you may know, i got to get off of the LID diet this weekend. the final tally, was that i lost ten pounds! ( i told you guys chelsea clinton used this diet to get thin for her wedding). anyway, i found out for sure that i am lactose intolerant. i will have to go easy on the dairy- especially when i am working. maybe,too, by limiting dairy, i can keep some of the weight that i lost on the LID off.

i will not have any results for two weeks or so, as i mentioned in one of my earlier blogs. the minute i get the news, i will let everyone know. thanks again for your thoughts and prayers, and of course, for reading my blog.

Friday, August 5, 2011

my last day at the emerald city ( i sure hope, anyway)

got there bright and early this morning- i have not slept in one day this week! i buzzed on down to radiology and they started my scans. they are so nice and friendly there, and have made this whole experience very pleasant for me( well, expect for Conan, i guess) .

i am not sure what the machine is called- well, i do know the name on the side" DETECTOR ONE" ( do you think  that there is a detector two and three?) they gave me pillows for my head and under my knees( the scan takes about 45 minutes .) one of the technicians also got a warm blanket for me. i know it is hot outside, but hospitals are so cold! the blanket felt wonderful. i had prepared somewhat, and had worn a light sweater, but the blanket was heavenly. the "scanning part" of the machine was a box like contraption that was about 3 feet across,3 feet long, and about half that in width.it moved very, very slowly over every part of my body. the only part that was a little disconcerting, was when it was over my face. it has a black X on the center. i had a somewhat claustrophobic feeling then, so i just closed my eyes. when it got down to about my chin, i was o.k. it scanned my entire body, and then they scanned just my neck. i am sure hoping that this extra scanning is procedure, and not something that they saw on the scan!

next up was something new to me. they did not do this last year when i had my first whole body scan. i sat in a chair and they used this "telescope" looking machine pointed at my neck. they were measuring any radioactive iodide that might be present. they also measured my knee. weird, but they needed something to compare it to. this only took a couple of minutes. i then said my farewells, i have become friends with these guys, and left for the lab.

just so things would not be perfect, the lab did not have my blood work orders( i checked on monday- i saw with my own eyes that the hospital did  receive them from my doctor). they told me that i had to go back to admitting and get them. it seems( and believe me this was after a while) the person who registered me, had forgotten to put in the orders, so i had to be re-registered( hey, i got a new bracelet out of it). finally the lab got my orders. the med tech who drew my blood was so nice, but for whatever reason, i have the planet Saturn( i swear, i wish i could include a picture of my arm here) temporarily tattooed on me.i hate to say that i am used to getting blood drawn, but as fellow thyroid patients, you know what i mean. i just do not really like it when they leave bruises on my arm. it makes me a little self-conscious when i go out somewhere.

so, i will wait now. my doctor will be calling me in about two weeks, when she gets the scan information from the radiologist, and the blood work back from the lab. she will probably end up calling me at work- because that is usually where i am. as i said before, hopefully i will not have to make a trip home.

on a happy note, i am visiting with my daughter and son-in-law this weekend. tonight, my daughter and i went to a zumba class in Raleigh. i was not sure that i could do it- this week has been intense, and i have not felt like attending any of my zumba classes at home. but i did it! not only that, the instructor asked us if we were instructors,too! wow, my daughter has her zumba certification and has taught a few classes, but me?? really?? i know she was just being nice, but it made me happy. maybe it was the pink belly scarf  that i wore tonight.perhaps  all of those silver  coins blinded her or worked some kind of magic. whatever, i had a great time, and am looking forward to the rest of the weekend. and i had cheese and chocolate for lunch! it just does not get any  better than that.

Wednesday, August 3, 2011

do i look like i am glowing??

"the black dog barks at midnight", " when it rains, i prefer purple umbrellas", " the package has been delivered" in other words, i have swallowed the tracer capsule of the I-131. pardon my theatrics, but it just seems so surreal, like i am a character in a mystery/adventure novel or something.

so i got to the hospital early this morning. people who work there are getting to know me. i am making friends. anyway, i go straight to radiology, and wait a little while until they call me back. the radiology technician who has been working with me is very, very pregnant. i was really worried about her handing me the I-131 dose. i know it is a small dose, especially compared to the huge treatment dose that i received last year, but still. so she struggles in the door with "the dose" and a water bottle. i worriedly said, " uh, could i do that for you??" she said," oh, i am going to let you open the canister,etc. AFTER i leave the room." i was glad that  she had made that decision. i waited until she closed the door, then i picked up the canister. i am always amazed at how much it weighs! i mean, it is the size of a Campbell's tomato soup can, and it weighs about 5 pounds or more.the expressions : "lead foot" "get the lead out" take on all new meanings to me now.

so, i opened up the canister, and the walls were  solid except for a very small opening in the center. in the center, there was  a small glass vial. see why i am thinking" mission impossible" or something? i read the label( i can not help it- it is the pharmacist in me) to be sure that  i was  getting the correct drug/dose. sure enough, my name was  on the vial, with the dose of 3 milicuries- plus or minus 10 per cent. to compare, my treatment dose was 156 milicuries. yes, i know that this is a very small dose, and i am pretty sure i am not glowing, but i still am going to take some minor precautions. i realize that i am just " background radiation" at that dose, but i do not want to take any chances. i know that i am just being overly cautious,but no harm in that i think.

i drove straight home, and decided to take a nap. i had to have an empty stomach to take the dose, and was told not to have anything for an hour after my dose. i thought that i would just sleep a little to pass the time. i had the oddest dream,though. i dreamt that i was at a vending machine that contained shrink wrapped  packages of cheese-all kinds, and that i chose three packs( i am sure that mozzarella was one of them). beside the vending machine was a parking meter. a policeman told me that i needed to insert money into the parking meter and wait. i asked him if he was the cheese police, and he said of course. i guess everyone can figure that dream out.

i was talking to my daughter last night, and she did the sweetest thing. i told her that friday, after my scan and on the way down to her house, i was going to stop by whole foods and get some chocolate! she told me to go upstairs in my little office, and look behind the papers on my desk-the ones  near my bills. she knew i would not look there. what i found, was  two ( organic of course) " Justin's dark chocolate peanut butter cups"! my favorite. she had hidden them several weeks ago, when she was visiting. i am going to stash them in my pocketbook for friday. right now, i have them "hidden" in my top drawer. yes, i can wait until it is time to enjoy them. right now, i feel like  i am the queen of deferred gratification.

i will try to blog on friday about my scan, blood work, etc. but it might be later on in the weekend. thanks to all who have read this, especially those who  have made comments. i really appreciate your support!

Tuesday, August 2, 2011

day two in emerald city

i was so afraid that the nurse i had yesterday would somehow be there today. maybe someone called in sick? lucky for me, he was having a good day off, and so was i. the nurse i had today, said," oh, you had ( i will not use his real name here, i will make up one) conan the barbarian yesterday? what hip did he use- oh, i see what side he used. i will give you your other thyrogen injection in the other side. " what a difference!! it was night and day. i could actually walk out the door after the nurse gave me the injection. i had my ice pack in the car. i used it, because my hip is a little sore, but to be honest it does not hurt as much as the other side. the medicine does sting a bit, and you can feel it going in and cursing through your muscle, but that is not any one's fault. the way the nurse chooses to give you the injection,however, does make a difference.lets just say i got lucky and got Glynda today.

tomorrow, i have to be there at 8am again for my tracer dose of the I-131. i am to  take the medicine and leave for home. i am planning on laying low tomorrow, and hoping that the medicine does not make me sick. i was really sick last year after the treatment dose of the I-131. i know that  the tracer dose is a lot smaller, but it brings back memories, i'll just say. i have to take it on an empty stomach, and can not have anything to eat for an hour after the dose. ( they want to make sure the I-131 guys get a head start. ready or not thyroid cancer cells, here we come!). actually, i hope the scouts do not find any. if they do, then they will have to call in the Calvary. my doctor says to "prepare myself" to have another treatment dose of the I-131. now how do you do that? i talked with personnel at work, and got a copy of some leave of absence papers, just in case i have to have another treatment dose. that is about as far as i have gone in preparing myself. if i have to, of course i will take another dose, but my body is telling me no,thanks, we had rather you go to the beach! talk about preparing yourself.

i feel fortunate to have been able to schedule this" scan week", for a week that i can have off. it is my short week, and i only had to have two days covered at work. ( i worked six out of seven days last week). anyway, besides a sore, well you know, i have been more emotionally drained than physically sick. i have slept a lot- when i got home both days, i passed out for over a two hour nap. i am coping the best that i can. this testing is sort of high anxiety for anyone dealing with cancer. my dad calls me a trooper. i am not sure that i am, but i am doing my best.

friday morning at 8am the scan begins. then after that, "important blood work". after i finish at the emerald city, i am headed for raleigh, and a special visit with my daughter and son-in-law. and i also have a date with some mozzarella and definitely a little  chocolate. it will be the week-end, so i will allow myself to have some dairy.my stomach will just have to deal with it.

Monday, August 1, 2011

here i go again, back down the yellow brick road, AGAIN

this is day one of my trip down the yellow brick road. i am back at the same hospital where i received my treatment dose of I-131- my chemo, you could call it, as well as my whole body scan. not too much has changed from last year. i got checked in this morning at 7:30am. the hospital is an hour away from my house, so i had to get up at 5:30 and leave at 6:30 to make it. the rest of my appointments  begin at 8am, so i sure will not be sleeping in this week.

after i left admitting- i gave them a big chunk of my checkbook, and they gave me this neat plastic bracelet with my name on it, i went to the radiology waiting room. i knew that i would not be seeing the wizard, but i saw his two very nice assistants from last year. they went over a few things with me, about what would be happening when. i thought that i would be getting my scan done on wednesday,but that is not the case. actually, the tracer dose of I-131 is given to me on wednesday, and my scan is on friday, as is my blood work. the schedule, along with a few other details, were discussed, and the wizard's assistant told me that a nurse would be coming in to give me my first dose of thyrogen. the assistant laid out the thyrogen, as well as a pretty large syringe/needle that i was trying my best not to look at.

after a few minutes, the door opens and in comes a six foot three, burly male nurse! now, i know it should not matter one bit, but i guess i thought that i would be seeing one of the female nurses from last year. i think that i am a master at masking my feelings- my family tells me otherwise, and it must be true. the guy says, " yes, i am the nurse." i guess my mouth fell open or something- i just have to stop doing that. the first thing i thought of then, was well, thank goodness i wore my good pink underwear!

this is good information here: wear a skirt with an elastic waistband. that way, you can slip it down a little ( as well as your underwear) and will not have to flash any innocent people unnecessarily. i came up with this idea myself and it works pretty well. so i was "in position" and waiting for my injection. i was trying to " relax"- if you do not tense up your muscles, it hurts less. before i could actually do that, the nurse gave me the injection. i think that perhaps this man plays darts a lot. what an arm he has. the medicine itself stings for about 30 minutes, but i was sore all the way home. i felt every pot hole in the road,too. tomorrow, i get a thyrogen injection in the other side. i plan to take an ice pack to sit on for the ride home. i should have thought of that today.

before the nurse left, i asked," so, will you be here tomorrow?" he said that he  has the day off. yippee!! he said that i would be seeing kathy or sue tomorrow. i am pretty sure they are female. he also said that some of his worst  patients are other health professionals. do you think he could have possibly been talking about me?

Tuesday, July 26, 2011

"that zumba makes me crazy, that zumba makes me crazy, that zumba makes me crazy,etc. " the that zumba makes me crazy song ? artist(s)t

we do a dance number to a song called, i will assume," that zumba makes me crazy". actually, that zumba keeps me from going crazy. if i had only known that  regular exercise, rather cardio-ish, could make me feel so good, i would have started this years ago. oh, i have always walked. there are lots of places to walk/hike around where i live. when my children were young, though, the walk went something like this: walk two feet, pick up a stick. walk two more feet, discard stick( or give it to mom) and pick up a precious rock. we made a turtle look speedy. and i have never been into " power walking". not that i am poking fun- whatever makes you happy exercise wise, is good.

love those endorphins, love those zumba belly scarves, the music, the dancing! who cares if the person right behind me is 25 years younger than me, wears a sports bra and pants that barely cover her, well, parts. as i have said before, enthusiasm goes a long way. besides, the woman in front of me has about 20 years on me and she can do a pretty good booty circle, by the way. whatever exercise that you choose, it can only help- especially those of us with thyroid disorders. it improves mood( my husband is cheering now) helps us with our weight issues( i won't go there) and for me, has helped me get my strength back. i mentioned this in one of my first blogs, but right after my surgery/I-131 i did not have enough strength to pick up my dogs water bowl! that was a turning point for me- hey, they were thirsty- and i decided that i needed to fix things. i have my daughter to thank for encouraging me to go to a live zumba class. the dvds are good at first- just so you do not look so much like a deer in the headlights at your first live class. but, really, being in a class with other people is so much more fun. even if we do occasionally do the texas two step, or whatever that was.

this is week two on my LID. i prepared better, food wise, this time. so, i have lost some weight, but not as much as i had imagined. o.k. hoped. i have lost about 5 pounds so far- not too bad. i have only been really, really hungry a couple of times. unsalted, brown rice cakes to the rescue- yeah. i have been sort of on a roller coaster, emotionally,though. i have been angry at times( when is the testing going to end?) and at times sad( what if something is wrong?) i try just to go on with my new normal life, but i can not help but be a little anxious about the test. my doctor said that she would wait until all the test results are back before she calls me with any results. the blood work takes the longest time to get back- about ten days or so. then she is supposed to call me. as you may know, she called me at work to tell me i had cancer. i had to go home of course.i am sure that i will be at work this time,too.hopefully, i will not have to go home this time.

just so you know, last week we had a substitute instructor  for our zumba class. my daughter and i did not get to save a horse, but maybe when she visits at the end of august, we can.

Wednesday, July 20, 2011

"and i saddled up my horse, and i ride into the city. i make a lot of noise,cause the girls they are so pretty. riding up and down broadway on my old stud leroy, and the girls say : save a horse, ride a cowboy. what? what? save a horse, ride a cowboy" Save a horse, ride a cowboy, by big and rich

it is DAY THREE  on my LID, and no, i have not lost my mind(yet). last year at this time, i was recovering from my treatment dose of the I-131. i was isolated in my house- pacing around upstairs like a tragic figure in some novel. anyway, i was not sure if i would have the energy, while i am on the LID, to go to zumba class. i decided to give it a try. i told my friend that if i passed out, she should  just kick me to the side and zumba on!

the class started out very well. we did my favorite warm up number, and then- SALSA!! yeah! i own that song. what i lack in skill, i make up for in enthusiasm. anyway, before too long, i thought that i heard a different kind of song coming from the instructors i-pod. oh,no, it was a country western song. my friend told me,"uh, bea, you might want to close your mouth now, i think i saw a fly in here."

our zumba area is right in the middle of a big room, with only a waist high glass block wall surrounding our area. outside of that is the track, as well as an area filled with treadmills, rowing machines, etc. a lot of people use the track as well as the exercise equipment. it was pretty busy tonight, but when we got to the chorus of that song,the rowing machines and treadmills stopped. the ( rather elderly) men walking around the track stopped,too. i think that the moves we did to the " save a horse, ride a cowboy" part of the song are illegal in a few states. we also, to make matters worse, sang those lyrics. rather loudly, i should say. i would also have to say that our zumba class has not caused such a stir since we did the whole "thriller" routine last october. our instructor sure keeps things interesting.

i was glad that i could do zumba, and so far, my normal activities while on  a pretty limited diet. i keep a pack of unsalted, brown rice cakes at work- just in case i get light headed or something. i sure do not have to worry about any of my coworkers eating them. in fact, one of the guys i work with snickers every time i crunch into one. he says, " oh, are those gooooooood??" haha. i asked him if he wanted any, but so far it is a no go.

i have also made a discovery- well i will know for sure by the end of the diet. i think that i may just be ( horror of horrors) lactose intolerant! my stomach has not hurt since i have eliminated dairy from my diet. oh, well, maybe after i get off this diet, i will save dairy for the week-ends i am off or something. i was hoping that it was another food- maybe wheat- that was bothering me, but it seems to be the dairy. just what i needed- more dietary restrictions.

in the mean time, i am planning to go back to zumba on saturday. my daughter will be  visiting, and we are going to the class together. i just can not wait to see the look on my daughters face if the instructor plays "save a horse, ride a cowboy." i am just not sure if the two of us can keep a straight face while doing the routine. we will be following the first and only rule of zumba though, and that is to have fun!

Monday, July 18, 2011

my first day on the LID.....

yesterday, i got out my trusty book, "the low iodine diet cookbook", by Norene Gilletz and decided to re-read it before i began the diet. i have mentioned the "why it is important" facts in some of my blogs, but i have not mentioned anything about the history of the diet. in the book, there is a forward by Dr. Kenneth Ain, who is director of the thyroid oncology program at the university of Kentucky. one chilling fact that i re-read in the book is that thyroid cancer can not currently be treated with traditional chemotherapy. so, i think patients should be diligent in understanding the importance of the LID, both in treatment with the I-131  and before full body scans.

for over 50 years doctors have been using radioactive iodine to treat thyroid cancer. while they recognized the importance of a low dietary iodine diet, there was much disagreement as to what a LID should be. so, in 1988, the NIH ( national institutes of health) located in bethesda, maryland, came up with a simple diet that was proven to be effective. dr. ain learned about this diet, and has made only a few changes in the past few years. the LID was unknown to most physicians,though, as late as the late 1990s. in 1997, dr. ain was invited to speak at a thyca conference, and since then, with thyca's help, the word has gotten out to doctors as well as thyroid cancer patients. ( footnote here: in case you are not aware, thyca is a website for thyroid cancer patients. they also have regional meetings, as well as sponsoring local thyca meetings which are organized by (usually) other thyroid cancer survivors.) if you have not checked out this website, please do. they offer wonderful information and support.

norene gilletz is a renowned cookbook author, and has used  the NIH guidelines in composing a cookbook that is informative, as well as indispensable. i personally could not be on the LID with any degree of confidence without this cookbook! whatever source you use,though, i would make sure that it follows the NIH guidelines. even a small mistake can wreck the diet.

so, yesterday, i spent a large part of my day cooking. i needed to be prepared for the next two weeks on the LID. i made coleslaw, blueberry muffins, baked chicken, and homemade bread. i have stocked up on fresh fruits and vegetables. i complain about this diet, but really, i think that it is probably what we should be following  all of the time. i really, really, miss chocolate and dairy! but i probably need to eat less of them- i know it would be healthier for me. one thing that i had to get,though, i am not so fond of. and that is unsalted( you can add your own non-iodized salt later, but no sea salt or iodized salt, of course) brown rice cakes. they are a snack for me- especially when i am at work and need a little energy to get through my shift. they have hardly any flavor, but are filling- the way styrofoam would be i think. anyway, they are a necessary evil for me, and one that i WILL NOT be going back to after the diet!

knowing a little bit about the diet- how it came about, why it is so important that we follow it just as closely as possible, helps a little i think. for anyone who will be on the LID now, or in the future, i recommend buying the cookbook. of course, you can go to the thyca website and see it there. but personally, i like to have a cookbook in hand. i enjoy cooking, and this makes it a little easier for me. i will let everyone know how i am doing, and good luck to those of you who may be on the LID with me.

Tuesday, July 12, 2011

T-minus nineteen days and counting!!

well it is done. i have cut my endo from duke loose, due the whole sulfite negotiation, or should i say non-negotiation, and my old endo faxed my orders for the thyrogen, scan, and blood work to the hospital near me. i am on the schedule for august 1st, just as i had hoped. i start on the dreaded LID on monday, july 18th. i am sort of dreading it, but hey, it could be worse. i could be going to the endo at duke who made you be on the diet for 4 weeks, not two. instead of the 20 pounds i had hoped  i would lose on the LID, perhaps i can lose ten. i would be soooooooooooo happy with that! i have managed to hold my weight steady since last year, but i really would like to lose about 20 pounds. i do not have to tell you guys how hard it is to lose weight without your  thyroid. who knew that the little guy could be such a tyrant? he calls the shots for your whole body it seems. even the best thyroid supplement is not quite the same as a well behaved thyroid gland. sometimes i still  miss mine. even though, as i said, before my surgery i had the worst case of thyroiditis that i have ever had! and  every time that i passed a mirror, i would look at my neck and say" wow, it does not look like there is  a monster in there, but there is!"

i need to get a new profile picture- one that shows off my neck. i wish that i had a before and after picture. i would have liked to post them, so that people would know that they are not going to look like the bride of frankenstein forever.  i wanted my husband to take a picture right after my surgery, but he did not want to. it is, of course, a world of difference. people tell me that if they did not know that i had surgery, they could not tell from looking at  my neck. the surgeon made the incision along the "natural crease of my neck" so it is pretty hard to tell. i, of course, see it plainly. especially if i am swallowing, or if turn my neck a certain way. i am not complaining,though! honestly, i was not worried about the scar. i do have a very public job, but i just wanted the cancer gone, and my husband did say " for better or worse " so there you go.

i guess it is natural, but i am a little worried about my upcoming scan. i have confidence in the hospital, that they will do a good job,but i am a little worried  about the "reveal" show scheduled for about 10 days or so from my test. my doctor has to wait for the blood test- which is done on friday of my testing- to get back before she will call me with all of the results. it  makes my palms sweat just thinking about it! i will probably be at work when she calls ( as i was last time, when she called to tell me i had cancer). lets hope this time the news will not make me have to go home.

as for this week, i am eating pretty much every thing that i want! i have made cupcakes, cookies, and a lemonade pie so far! don't worry, i am sharing this with my co-workers and family. i just need to tank up a bit before my LID! the no dairy products was the hardest part of the LID for me. as i said before, i probably eat too much dairy, if i miss it that much. yesterday i went grocery shopping and bought some more unsalted, brown rice cakes. styrofoam, anyone??? i am sure that they taste the same! one tip though: the brown rice ones taste a bit better than the white rice ones. normally i do not have such a sensitive palate, but trust me on this one!

Wednesday, July 6, 2011

"Well, i won't back down, no, i won't back down. You can stand me up at the gates of Hell, but i won't back down. No, i'll stand my ground, won't be pushed around. and i'll keep this world from dragging me down, gonna stand my ground, and i won't back down. well i know what's right, i got just one life. in a world that keeps on pushing me around, but i'll stand my ground. AND I WON'T BACK DOWN! " Won't back down, by Tom Petty

one thing i have learned from having cancer, is that you have to stand up for yourself. i just will not be forced to do something that i am not comfortable with, or do not feel good about. i have been going around and around with  my new( soon to be ex) doctor from duke concerning the tracer dose that i have to take before i have my full body scan. the doctor uses I-123 liquid, and not the traditional I-131 capsules. i have had the I-131 treatment dose, as well as a tracer dose in the past  and did fine with this. when she mentioned that i would be taking the liquid I-123 i did some research. i found out  that it contains sulfite preservatives. i have anaphylactic shock reactions to sulfite preservatives. so i asked her to please change to the I-123 or I-131 capsule instead. sounds simple, right? even though i explained to her that i have been dealing with this allergy for the past seven years, and offered to give her the name of my allergist if she needed further confirmation, she would not change the order!!

this would sort of be like if someone had a peanut allergy- and we all know how bad those are- and someone offered to give them " just a little bit of peanuts". no one knows at what percentage sulfites will cause someone who is sensitive to have a reaction. manufacturers are not required to list these preservatives( there are six chemical names) unless they exceed ten parts per million. concentrations of less than this have triggered reactions in sensitive people.

o.k., i guess i could just take my epinephrine injection and my atarax tablets with me and take the liquid I-123  anyway, but i am not. anaphylactic reactions are just horrible! and when you have one, you never know if it will be your last, if you know what i mean.

i have thought this over ( and over again) and have decided to go to the semi-local hospital for the scan. it is where i got my "chemo" treatment dose of the I-131 and my scan the first time. i like the radiologist( remember the wizard from one of my previous blogs? he caught the mistake in my I-131 dose. he is on my good guy list forever now). i also like the small nature of the hospital, and the fact that i can drive myself to and from  the several visits that i have to make for injections, tracer dose of the I-131 CAPSULE, scan, and blood work. it takes all week. my good old endo from raleigh has been kind enough to agree to fax in the orders to this hospital for me. i had not stopped seeing her, thank goodness, and have an ultrasound already scheduled for september.the only part that i regret really, is the accuracy of the blood work. duke sends theirs off to the mayo clinic, and the results are, as i found out, much more accurate. i guess i will just deal with this the best way that i can. there is also a little" hoping for the best"  in there, as well.

this has been a hard decision for me, really. but i know it is the best one. i was o.k. with the 4 weeks on the LID diet, although i am not sad that it will now just be two weeks. and FYI, Noreen Gilletz, author of the Low Iodine Diet cookbook, says that there is absolutely no reason to be on the diet for more than 2 weeks. i was willing to compromise on this point, but not on the sulfite issue. i am looking out for myself, and will not agree to do something that i know is going to harm me. as tom succinctly puts it, "well, i know what's right, i got just one life". please do not let anyone try to push you around on a health care issue! as with any good doctor patient relationship, there has to be some compromise and two way discussion. i want a confident doctor, of course, but not one who is unwilling to listen to my concerns and adjust their treatment.

i am waiting on conformation of the scan date. hopefully, it will begin on august 1st. this is a short work week for me, and would not involve as much coverage while i am off to see the wizard, yet again. i have been a little depressed about all of this lately, i will admit. i am feeling better now- now that i feel like i have some control over   what is going to happen to me. that and the fact that i wore my new pink belly scarf to zumba tonight- it matched my pink tee-shirt, and i tried my best to shake the coins off. amazing what a little salsa can do for your spirits!

Sunday, June 26, 2011

the simple joy of going mossing

every since i was about 5 years old, i have loved collecting moss. ( i was a strange child, o.k.? ) my family and i lived in a small house near a creek bank and it was shady- a great place to find moss. i would collect pieces, and make a sort of doll house with them- using acorn caps as dishes, as well as pieces of mica, rocks, sticks or whatever else i could find. i had a real doll house inside to play with, but it never compared to the one that i made myself.

my fascination with moss continues to this day. i have a moss garden set up in a large planter near my house, and i love to see the various kinds of dried moss in the craft section at Michael's. i especially like reindeer moss- the color and texture of this one is very nice. do you think they have it at the north pole? just kidding.

the best way to get moss, however, is to go mossing. i am fortunate that i live in a place that moss seems to love- shady, gets lots of rain, near the forest,etc. we have FINALLY finished, well, o.k. mostly finished, our house remodeling project. we have now turned our attention to our flower gardens, which have suffered a bit due to the amount ( or lack of) time we have spent on them this spring/summer. we bought some bedding plants to fill the planters in the front of our house and planted those this weekend. but they always look better, and retain moisture better, dressed out with pretty, green moss.so, yesterday, my husband grabbed a big bucket, and we took off for our moss hunting grounds. i love to look at wildflowers,too while we are collecting moss. this time of year is sort of an  in between time  for wildflowers. you can see more wildflowers  here during the spring and fall, but still i saw some really pretty tea berry plants, plenty of ferns, along with some queens anne's lace. i also saw some poison ivy, but i did not collect that one.

we managed to collect a whole bucket full- just enough for our planter boxes, as well as a couple of special pieces that i arranged in my moss garden. luckily there is a ton of moss around here, but we never take it all. it will grow back,of course, but we always like to leave some. makes the forest look better, i think.

tomorrow morning we are starting on a small remodeling project- we are screening in our back porch. along with a great selection of moss here, we also have lots and lots of mosquitoes, too. i am excited about having a place to sit in the early morning or evening without the worry of being carried off by the bugs. this project will take a week or so. the carpenters will be extending our small back porch a bit, so they will have to extend the roof line some. this will mean they will have to remove our satellite TV and INTERNET dishes, so i will not have access to the Internet for a while. they say it will take a week or so. i have learned that remodeling projects always seem to take longer, so it will probably be two weeks or so. i am writing to let you guys know that i will not be able to blog for a little while. but just as soon as they get the dishes back on the roof, i will pick up where i left off. i am hopeful that when i do get back to my blog, i will be able to tell everyone that my scan has been scheduled, my doctor has decided to let me take the capsule instead of the liquid I-123( my doctor and i are still going around and around about that),  and all will be right with my little world.

so i will be busy cleaning up construction mess( more than i would like to), mossing( perhaps), and shaking the coins on my belly scarf in zumba class( definitely). i hope that everyone is enjoying the little pleasures of summer and that you are well and feeling good. . blog you soon!!

Saturday, June 25, 2011

"We can never know about the days to come, but we think about them anyway. Anticipation is making me late, it's keeping me -W-A-I-T-I-N-G . And tomorrow we might not be together. I'm no prophet, i don't know natures way. .....these are the good old days." Anticipation by Carly Simon

well, i certainly am still waiting to get my scan! it seems my doctor and i can not come to terms with the fact that i am allergic-anaphylactic allergic - to sulfite preservatives, which are present in both the LIQUID i-123 and I-131. i researched this, and found proof from the product listing. i am not sure why the liquid is so much better than the capsule, either. oh, and of course thyrogen has been on back order, which has caused a lot of worry and waiting for several other people. i believe that now, or at least in july, the thyrogen should be back on the market, according to the reports that i have read. so i am w-a-i-t-i-n-g  for my doctor to switch my tracer dose to something that might not kill me( seriously) and for the thyrogen to become available again. i am hoping that i can get my test done the week of august 1st. i am going to stay all week in raleigh, so that would give me some time to visit with my daughter before she has to start back to school. everyone keep their fingers crossed for me, o.k.? i certainly am going to need it.

last night, i got on amazon.com. i should know better than to do this when i am depressed, but i did anyway. i looked at one of my favorite things to buy- belly scarves! i have the reputation of having a belly scarf to match all of my tee shirts( well not ALL of them). so i ordered a light pink one with silver coins and a sheer black one with silver coins. man, do i love to make those coins jingle!! today i went to zumba, and during one song, i managed to flip some of those coins onto my back( one of my personal goals, lol ) lucky for me, the scarves are inexpensive, because i sure do like that bling- and the sound that it makes. also, we were dancing to one of my favorite songs- " What is it?". funny story, but when i was trying to tell my daugter what the name of the song is   ( she is a part time zumba instructor in raleigh) we sort of ended up like that abbott and, costello joke- who's on first? i told her about the song, and she said, what is the name? and i said " what is it?" we went on like that for a while, and she finally said I DO NOT KNOW, IF YOU COULD JUST SING A FEW BARS OF THE SONG, MAYBE I COULD FIGURE IT OUT! i am not sure, but i don't think that she has heard it yet.

i had a great experience this week. i just reconnected with my best friend in high school- all because of facebook. i had  not seen her for, well lets not say how long- just a long,long time. it was so good to email her and catch up a bit on what she has been doing since high school. we lost touch- you probably know how that is, but i have been thinking about her often. i told her a little bit about my situation, and she even read some of my blog. she has had her challenges in life,too. i told her that while we can not choose the hand we are dealt in life, we can control how to play it. everyone has challenges and it is how we deal with them that makes us the kind of person that we are. sounds like an oprah moment, but it is one thing that i have figured out, one "thing i know for sure", so to speak.

would it not be great if we figured this out in our twenties? i suppose there are some people who do come to this realization- that life is precious, and we need to enjoy every moment, do what we love, with the people that we love and be thankful for all good things coming our way. i still feel that way- even a year after my diagnosis. i think this is a game changer for me. it has stuck, long after the surgery,chemo,etc. of course i do not feel out of the woods yet! i will feel better after my scan ( if i ever get to have that scan!). of course, i will just have to be patient, and wait a little bit more, as carly recommends. of course, i do need a few more zumba belly scarves in the meantime....

Wednesday, June 15, 2011

"...thank you for the music, the songs i'm singing. thank you for all the joy they're bringing. who can live without it, i ask in all honesty? what would life be? without a song or a dance, what are we? so i say thank you for the music, for giving it to me. " Thank you for the music, by Abba

of course in this song,abba,  is thankful that they can sing so well. i am not able to sing very well now- i have good and bad voice days, along with salivary gland issues- still. yet i am so very thankful for the music that i hear. and i still sing in the car - on my way to and from work, when i am by myself. i sing with a joyful heart, if not always hitting the correct notes. i left a message on our answering machine for my husband yesterday. we happened to be working  different schedules and i wanted to tell him something. of course, my husband never checks our voicemail, so it was still on the machine when i got home. i listened to it and was shocked to hear my voice. o.k. i was having a bad voice day, but still- was the voice on the answering machine really me???

on another website that i occasionally read, someone had written an article about their "new normal". i wrote a similar article on that same topic  a couple of blogs ago. i promise that i did not read hers first! but i imagine that many, if not all, cancer patients have the same feeling that " we" do. we have new normals for ourselves. things will never be exactly the same, but that does not mean that they can not be good again. it is hard sometimes to adjust to what we have to do now- after having cancer. i used to be able to sing pretty well, but i am having to adjust to a new voice and the fact that i would embarrass myself if i sang out loud. i still love music dearly, and i enjoy listening to good music. that fact  will never change. but i am having a little difficulty adjusting to this new normal.

the thing that gets me through this challenge, is that i know i  had to have the surgery, that was  a certainty. my surgeon did a great job with what he had to work with- the cancer was invasive into the parathyroids, lymph nodes,and some of the surrounding tissues. i imagine that the vocal cords were pretty twisted too, and not in a fun way. so, he did his job, and i am here today. i am grateful to be here! i am trying not to whine too much about my singing/speaking changes. i am adjusting to my new normal. i do however,  wish that people would not ask me if i was sick sometimes- i sound like rachel ray with a very bad cold at times. but i just try to tell myself that squeaky, husky voices are " in" right now. lucky me!

and by golly, thyroid cancer did not affect my dancing! i am going to zumba tonight after a two week absence. ( we have been working non-stop on getting our house back together after the remodel). i will salsa my heart out tonight, and hopefully not be too sore tomorrow. i may not be able to sing very well, but i surely am the dancing queen!!

Saturday, June 11, 2011

"duh,duh,...duh,duh...DUH DUH DUH DUH DUH DUH..(insert scream here) oh no,it's a BLOG ATTACK!! you can hum this to the scary music from the jaws movies if you'ed like

this blog will NOT let me sleep tonight! it is an open letter to all of my blog followers for your help. as some of you might know, my friend Wendy and i have this website called: thethyroidnecklace.com. we offer a FREE necklace to a thyroid cancer patient, as well as providing (hopefully) good information and our support. it is a non-profit program- we accept donations for necklaces, as well as new or homemade jewelry. all that we ask of recipients is that you provide your "cancer story" and it can be as long or as short as you would like, along with a picture of you. we then will send you  your necklace- our offering of hope and support- and print your story/picture on our website.

some of you might be a little hesitant to write a story chronicling your adventures with  thyroid cancer, but i know from experience how liberating this can be. i started my blog a year ago, as a way of helping others deal with some of the issues i was facing. i hope that i provide good information on thyroid cancer/treatment. but i would be amiss if i did not admit that my blog has been a lifeline to me. it has helped me deal with my situation, and to know that i am not alone. i have "met" some amazing and inspiring people through my blog. that is why i am reaching out to all of you to help us with this project! we are having some trouble getting the plane off the ground so to speak. we have lots of necklaces that we would love to send to fellow thyroid cancer patients.

if you would like to help us with this project, please email me at : dreamfields4ever@aol.com. and we can get started. i would like to thank everyone, especially our first two recipients on our website, in advance for your help and support.

there, i did it. now maybe i can get some sleep.

Friday, June 10, 2011

gee, maybe i am back to "normal" now

we have just finished a three month, well closer to four month, house remodel project. i have been so exhausted that i began to worry that my cancer was back! then i realized a few things: 1) i am getting older- not a bad thing considering the alternative and 2) my thyroid has flown away, and no matter how well my thyroid medication works, it is just not quite the same. i need to be more patient with myself, and realize that i can not work as hard as i did when i was in my twenties( and i had a thyroid then, as well).

i think that every thyroid patient- especially a thyroid cancer patient- that i have talked to has complained about exhaustion. people just do not realize what a powerful organ that our thyroids are. and with most things in life, you really do not miss it until it is gone. when i get sad and start to miss my thyroid, i think about the cancer, and the really,really bad case of thyroiditis that i had before i had it removed. have you ever had thyroiditis? it is so painful and i was to the point that i was just hoping my temperature would be low enough that they would not postpone the surgery. thankfully things went on as planned, and of course that took care of the thyroiditis.

with the remodeling project, i would work for several hours- cleaning- we had dust EVERYWHERE. one day i was in the kitchen trying to fix an omelet before i went to work, and i almost had it out of the pan when the carpenter cranked up his saw. this great "cloud" of sawdust covered everything in the room. and i do mean everything. i can now say that i know what sawdust tastes like,though. ( not too bad, and i just thought of it as a little extra fiber). along with cleaning, i helped move boxes and the occasional piece of light furniture. the thing i did not like, was that  after a few hours my bed pulled me in like a magnet. i could not have resisted it if i had  tried. was that normal? no, not compared to  a few years ago. but i guess that this is my new normal. o.k., i need extra rest now. i feel lazy sometimes, but i still take a nap if i can. some days are better than others, energy wise, and i will admit to going to bed earlier, or sleeping later.

i exercise, yes, zumba!, and i do the best that i can. my house may not be "martha stewart" ready,EVER, but that is o.k. i work full time, even though at times i feel beyond exhausted. but i am here, and i have an awfully lot to be thankful for. i will admit that adjusting to the new normal has been tough. but i am getting there.

Monday, May 30, 2011

"I need to laugh, and when the sun is out, I've got something to laugh about. I feel good, in a special way, I'm in love and its a special day. Good day sunshines, good day sunshine, good day sunshine...." " Good day sunshine, by the beatles

whew, the sun is out, the storms are over( for the moment), i am back on the computer, and my three month house remodeling project is almost over!! what a beautiful day. this is also vacation week for me. i was supposed to spend it in the hospital, getting my full body scan. as some of you might be aware of, thyrogen injection is on backorder from the manufacturer. it is supposed to be available sometime in june. "the best laid plans of mice and men" as they say. i will probably get my scan sometime in july. my new doctor requires that her patients be on the LID for four weeks. FOUR WEEKS!! well, i should be able to easily shed the 20 pounds that i want to lose. ( no joke)  i had a hard time being on it for two weeks last time. the author of my LID cookbook, Noreen Gilletz, says that there is no reason to be on the LID for more than two weeks. does this mean that my new doctor is a sadist? i am not sure, and i should have asked her why four and not the usual two. i am going to ( since i now have some time) inquire about this and get back to you with her answer..

also, she uses the I-123 not the I-131 for the tracer dose. that is not going to work for me( she does not know this yet- i will mention it when i call her nurse this week). i did some checking, and i found out that the LIQUID I-123 that she uses has sulfite preservatives. i am highly allergic to this-anaphylactic  allergic, so i can not use this. i will have to get the I-123 capsule( if there is one) or the I-131 capsule. i have had the I-131 capsule before- both the tracer dose for a scan, and the much, much larger treatment dose. i did fine with that one. i had listed  on my records that i was allergic to all sulfite preservatives, but  no one caught this. good thing i am diligent in checking ingredients in foods and medicines that i take. just another example of taking responsibility for  my health care issues. really,i do not expect anyone to take care of this for me- it is an unusual allergy.  however,  one time i had a cat scan done, and the radiologist noticed that i had a sulfite allergy and changed the contrast medium that i had to drink to one that was sulfite free. i was impressed, but this is an exception, i am afraid.

on a lighter note, i get to go to zumba( if my knee holds out!) for two, possibly three times this week!! yeah. i also have to admit that i bought a pair of zumba pants. i was trying not to, but i decided to give it a try. well, they look cute, but run a little small( really, i am not just saying that!). and the disturbing thing to me is that they come too far  below my belly button. i guess by this statement, you can tell that  i am an old lady! i promise that i do not wear "mom jeans"- my daughter fixed that problem for me a few years ago, but i just do not like anything too low. we have two guys in our class, and well, i  was afraid that they would stand behind me in class and that i would  accidentally moon them or something.i got up my nerve and wore them to class last time. i unsnapped the flippy,floppy streamers( too much competition with my belly scarf- i am  NOT giving up wearing that!). i was feeling pretty cool until we started to do some "bending over" moves. i was a little too anxious, even though the guys were in front of me! next time, i am going to wear my boring, sort of old lady, exercise pants i purchased a while ago from LL bean. they work, but they are not cool like the zumba pants. . maybe, after i have been on the LID for a while, i will get up my nerve and try my fancy zumba pants again.

Thursday, May 19, 2011

"Ground control to Major Tom, take your protein pill and put your helmet on. ground control to major tom, commencing countdown, engines on. ....i'm stepping through the door and i'm floating in a most peculiar way, and the stars look very different today. ground control to major tom. your circuits dead, there's something wrong, can you hear me major tom? can you hear me major tom? can you......" Space Oddity by david bowie

i certainly have felt like i was floating alone in the universe without my internet! and to think that i imagined that i did not really need a computer! i finally got my internet service fixed and running as of yesterday. i can get back in touch with my email friends, work on my blog again( i have really missed it!), and oh yes, delete some of those 400 or so emails that i now  have in my inbox.

i hope that several of you have checked out the new website i mentioned last time: thethyroidnecklace.com.
wendy and i sincerely hope that this will be a help to others and maybe offer a little hope and comfort. i am excited about this project, and pray that it will be successful. a friend/co-worker of mine is purchasing a necklace in memory of her mother, who died of thyroid cancer. i asked her to write a little something about her mother, and we will include this in our website for the next necklace recipient.i think that this is a great idea- to purchase a necklace for  another thyroid cancer patient in honor or memory of a loved one.

today was my ONE YEAR CANCER FREE ANNIVERSARY!! yes, this time last year, i was in surgery. i was in a very good mood today at work. most places are better than the OR, right? i have an awfully lot to be thankful for- my family and friends have been so very  good to me. i have been so fortunate to have been able to write this blog-i hope that it has helped others as much as it has helped me. i have made so many great "internet friends". it is so good to be able to talk about thyroid cancer with other thyroid cancer patients. you guys just get it- like no one else does.

my husband sent me flowers to help me celebrate. he has been so supportive, i just can not thank him enough. i hope that every thyroid cancer patient, or any kind of cancer patient, has someone who will be there for them. someone who will offer unconditional love and support. i have realized this year just how much i needed those two things, and how appreciative i am of them.

well, it is good to be back on-line. i also had to miss zumba a couple of times because i hurt one of my knees( doing zumba). i have made friends with my knee brace, which i now  do not forget to wear to zumba, even though it sort of shows( i think) under my exercise pants. the combo of not being able to blog, email or go to zumba was almost too much!! i think that i might have been a little grumpy during those two weeks or so. if my husband noticed, he did not say. see what i mean? he is the greatest. thanks,sweetie!

Saturday, April 30, 2011

A new website: thethyroidnecklace.com, and some good news!

i finally got all of my test results back  from duke, via the portal internet site. i have  decided that i like this.( better than the confused, half results that i got from my former endo  via the phone nurse last time. )  i have a password, and i just look at the results- at the same time that my doctor sees them.  if she has any comments, she puts a symbol beside the particular report, or result, and i click on that to see what she has to say. i will have to admit that i would have liked to have gotten just a "you're o.k." comment,too.anyway, there was a HUGE difference between the blood work that i had done at my old endos office and the one at duke. my new doctor told me that they had a more sensitive and reliable test at the duke lab, so i will surely go with that! to compare: my first results were thyroglobulin antibodies 5.6 ( anything over 2.0 is considered positive ) ; thyroglobulin 2.3.( also considered positive).   the lab report at duke showed: thyroglobulin antibodies to be less than 0.6 ( considered negative) and thyroglobulin less than 0.1( also considered negative, or if you were me, PARTY TIME!!) let my story be your cautionary tale. if you have doubts or concerns about any test, get a second opinion. it is your life so you should do your best to get the best information/testing that you can possibly get.

now on to the really big news! a good friend of mine, wendy garland, and i have launched a new website called: thethyroidnecklace.com. our purpose is to educate people about thyroid cancer,resources,etc, and also to present a new necklace to a woman who has had  thyroid cancer. we want to show our  support to other thyroid cancer patients, as well as helping the recipient feel better about that huge scar on her neck. the scar fades over time of course, but it does take some adjustment. this is just a reminder that we care about other thyroid cancer patients, and we certainly have been there as well. wendy and i talked about this, and we decided that the recipient does not have to be newly diagnosed, or has  just had her surgery. everyone's  scar heals differently, and a person might be still dealing with issues a few years afterwards. so, please send us your story about your "adventures in thyroid cancer" to our new website if you are interested. we are going to feature one recipient per month to start, but we are hoping that this will take off, and we will be able to feature more women in the future. our website is non-profit, by the way. we are accepting donations for necklaces if anyone is interested in that- hopefully that will be the case!

we have our first recipient, becky drewrey, and her story is on our website. her story is very interesting, and it is good to read about the experiences of others. i got acquainted with becky through my blog, so i am thankful to so many people who have helped me along the way. mary shomon, host of aboutthyroid.com, really got my blog going for me when she did a feature story about it on her website. i would also like to thank my husband for being such a good sport when i got up late at night, a "blog attack" we call it, to write something i  just had to get onto the computer. i appreciate all of my readers, those of you who have made  comments or not. i sincerely hope that i have provided some good information, as well as support or encouragement to other people who are dealing with thyroid cancer.

a big thank you goes out to the graphic designer who did our logo( for free- she has a big heart,too). her name is jessica rose padgett. she took the ideas that  i had in my head for our logo, and made them happen, beautifully, on paper( o.k., computer). so please visit our website and give us your feedback, and let us know if you are interested in becoming a recipient. and thank you so much, again, for reading my blog.

Wednesday, April 20, 2011

What in the world was a UNC- chapel hill graduate doing on the campus of Duke University???

the only time that i have ever  been on the duke campus was quite a few years ago when i was a student at UNC chapel hill and attended a basketball game. at the time, all i cared about was throttling them. the rivalry between our schools still goes on strong, so never in my wildest imagination would i have thought that i would go back  to THAT school for any help. 

thanks to wonderful directions from a friend of mine, my husband  and i arrived at our destination with very little stress, and only a minor hike in my blood pressure at check in. the person helping me get checked in- taking my vital signs,etc was wonderful. she even came looking for me when she thought that i had been waiting too long for my lab appointment, after my doctors appointment. i will tell you more about the lab later on. 

so i saw the doctor. she had a student with her, which i think always makes for a somewhat awkward situation. i know that people have to learn how to take care of patients, and that this is part of the process, but i do feel that it makes it a little harder to talk to the doctor. she ordered a repeat on my lab work, and really would not comment too much on what i had had  done at my other endos office. i was expecting that, and i understand where she is coming from. i am sure that she feels more confident using lab work done at her hospital. she told me not to "rule out" more surgery or chemo if she finds something. wow, i was a little surprised about that, i guess. the way i figure it, if i get a good scan and good blood work this time, i am going back to my old endo and try to put this behind me. if however, something comes up-i,e, the cancer has come back in my neck area or somewhere else, i will be in a good hospital for treatment. 

the full body scan is tentatively scheduled for the first week in june. it takes that long for the insurance to approve the thyrogen injections, and it will work out well( i guess) schedule wise for me. that is our vacation week, and so i do not have to worry about my husband or myself getting off work for the procedure. you see, this scan takes all week! on monday i get a thyrogen injection. on tuesday morning i get another thyrogen injection. on tuesday afternoon, i get an injection of ( a tracer dose) I-123. no, not I-131, this doctor uses I-123. i am not sure why she likes it better, but i think that it is because it is given IV and not in a capsule form. also, it is supposed to give better scan results, though i am not sure why this is so. so on wednesday, i have the scan done. on thursday i get to go shopping with my daughter! yeah. then on friday, i go back to duke for the all important blood work. she said i had to have this done there. period. so i am staying with my daughter and son-in-law from sunday night until friday morning. 

i first thought about having the thyrogen injections done at the hospital in hickory( like i did the first time), but as many of you may know, there is a shortage of thyrogen at this  time, and i thought that duke would have a better chance of getting the drug. also, i will admit it is actually less trouble for me to have it all done at one place, and of course there is the added benefit of getting to visit with my daughter. i may even go to some zumba classes with her, that is, if can muster up the energy.i probably will though, everyone knows how much i love zumba! 

i said that  i would tell you about the lab appointment. duke university is a very big place, right? modern, cutting edge medical treatment and so on. the lab for that clinic was the size of a broom closet! really, i am not kidding. the med tech came out to get me and led me to this tiny room that would have been small for one person, but there were about 4 of us in there, and oh, i forgot, a dog. a dog! he was in training, i suppose , for guiding blind patients to the lab. he came right over to me( i know not to pet guide dogs in training), but i guess he knew a dog lover when he saw one. i told my husband i sure hoped that he was not a cancer sniffing dog!  i was sitting in a very small chair that had only one "arm" - on the right side. since my good vein lives in my left arm, i crossed it over my body and laid it on the chair arm. the med tech said " whats da matter with yo' right arm??" " there is no blood in there" " Really?," he says. " Yes, really, and my good vein is about right here", i said, as i pointed to a spot on my left arm. Surprisingly, he hit the mother lode. maybe surprising to him, but since i have been stuck about a zillion times, i like to save the med techs some trouble, and me some pain. 

the thyroglobulin results will take about ten days they said. and i can view them on the computer at the same time the doctor does. i am not sure if she will call, write, or send  out a carrier pigeon  with her diagnosis. maybe she will send me an email. i am o.k. with everything now, i have adjusted and have come up with my own plan of action. that always makes me feel better- more empowered. i will of course, let everyone know what i found out. i have been to duke and survived. someone even had a carolina flag up in the lab.i asked the med tech if it was his, he said "heck, no". maybe it belonged to the dog.....

Tuesday, April 12, 2011

And now for the rest of the story......

after a very terrible day yesterday, worrying that my thyroid cancer was back somewhere- lurking around in my body, spreading mayhem everywhere, my doctor's nurse left a message on my voice mail today. she said that i have thyroglobulin antibodies present in my body, and the test was probably not accurate!! imagine that. no one has ever told me that, and if they had i would not have freaked out so yesterday.

i am going to include some information from " The Thyroid Cancer Book, 2nd edition" by Sara Rosenthal. this is so maybe some of you out there can avoid this situation that i have had to deal with. ask your doctor about the thyroglobulin antibody test- and make sure they do one when they test for thyroglobulin and that they TELL you if you have the antibodies present or not.

from the thyroid cancer book: " around one quarter or more of thyroid cancer patients ( particularly women) have immune systems that produce antibodies against their own thyroglobulin. the reasons for this are not understood and they do not directly influence your health; however, they can make thyroglobulin testing difficult or even impossible. this is because these antibodies interfere with the blood test for thyroglobulin performed in the lab and prevent the thyroglobulin level in your blood from being accurately measured. If the thyroglobulin antibody level is undetectable, then the measured thyroglobulin level may be considered reliable. if the thyroglobulin antibody level is above the normal values for the lab, then you can not rely upon the thyroglobulin level to see if you have persistent thyroid cancer. "

i mentioned this once in one of my earlier blogs, but i wanted to bring it up again. i did not know that i had thyroglobulin antibodies present and i would hate for anyone else to suffer because they did not have this information. my new doctor- the papillary thyroid cancer specialist( i see her next week) actually called me back today,too. her nurse did not leave a message, but i am going to try to reach her tomorrow. i am curious about what she has to say about my test. and i am sure that she will be repeating it when i go to my appointment. i am not ready to celebrate, but i sure do feel better about things now! i was planning on going to Zumba tomorrow anyway, but tomorrow i can shake those coins on my belly scarf with a lot more joy!!