Tuesday, August 31, 2010

"I want to live, I want to give. I've been a miner for a heart of gold." Neil Young

i do want to live! i do feel that i have some more  to give and to do with my life. i have, however, found my heart of gold. my husband and my partner has been so good to me. i just can not thank him enough. i work full time, and when i come home to my "chores" they look overwhelming to me at times.he always pitches in and helps me without my having to ask . i am not sure that  i could have managed small children with this illness. my admiration goes out to all of you who do have the care of small children, and this illness to deal with. not only do we have the surgery,  and the horror of the "C" word to deal with, but we also lose our master gland. the locomotive that pulls our train  down the track so to speak. i am glad for modern medicine, but even the best thyroid supplement can not completely take the place of a normally functioning thyroid gland. it sure helps though. one of my great aunts had her thyroid completely removed and she did not take any thyroid supplement! i am not sure how she made it from day to day.she worked hard outdoors every day, and she lived to be over 100 years old. she always said that when she died, she wanted to fall over in her flower bed. well, she almost did!

my dad had his thyroid removed today.( i think there is a family curse on all of our thyroids or something). he did not have cancer, but his nodules were enormous. he got choked drinking water. he has done very well so far, and his surgery only lasted two hours. ( mine lasted almost 5 hours). they did not have to remove any of his lymph nodes, of course, and he got to keep all of his parathyroids.( his did not choose to go to Paraguay, thank goodness) . i had to work today, but my sister was with him. i called him several times, and my husband and i will be taking care of him all day tomorrow, friday, saturday and monday. i made a pound cake for him this morning, and some custard when i got home from work this evening. i am making him  some potato soup tomorrow before we leave. he is 84 years old, and in very good health, but i still worried about how he would do. i think that he probably did better than i did. ( you can refresh your memory with some of my earlier blogs about my hospital stay- the extra large emesis " bucket", etc. )

i have been very interested in my  fellow thyroid cancer patients personal journeys. i am constantly amazed at the grace and stamina that everyone has had when facing this situation. if i could hope for just one thing for everyone with thyroid cancer, besides a full recovery of course, it would be that everyone has found their heart of gold. someone to love and support them. it makes this journey so much better.

Friday, August 27, 2010

"The Big C "

i was intrigued with  the new show about cancer, called " The Big C". Laura Linney is a really good actress, and the idea was something different, i thought. my daughter was worried it would upset me to watch it( how sweet) so she screened it for me. she decided that maybe i should not watch it. i mean, it is a pretty depressing premise: a woman has stage four melanoma, has only a short time to live, and does not want to tell any of her dysfunctional family members. she goes about  doing some things that she has always wanted to do, for example, putting  a swimming pool in her front yard. i decided to watch the show, and if it was upsetting i could always turn off the TV ( a novel  idea!). actually, it is very funny, in a macabre sort of way. the actors are very good, and there are some very funny scenes- at one point, she shoots a school bus with a paint ball gun so that she can get her son off. she does not want him to go to soccer camp, but wants to spend the summer with him doing fun things.

i of course thought about my life up to now. i have lived a pretty conservative one. i have worked and then come home and taken care of my family. the only partying that i have done is to attend  birthday parties for the kids, or other family events. sounds pretty boring, but actually i am very happy. i wish that i would have had more fun, and not worked so much( i think everyone thinks that). i love every minute i have spent with my children, and always look forward to spending more time with them. since they are now married and live away from home, it makes the time spent with them even more sweet. i have thought about doing some things that i have always wanted to do, but i can not come up with very much. my husband and i are probably going to take a long trip next summer and i am looking forward to that. as far as how i go about living my life, well, i just keep on the same path. the only difference, is now i try to notice more, and definitely appreciate more of the goodness around me.

cancer is not a discriminator. it is an "equal opportunity destroyer." no matter who you are, young or old, rich or poor, you can have cancer. the point is, i guess, how you decide to handle things.i get depressed sometimes, but basically i try to make the best of things. i realize how lucky i am to have supportive family members. i may not have a paint ball gun, or dig up my front yard and put in a swimming pool, but i am enjoying my life. isn't that what matters most?

Wednesday, August 25, 2010

" And girls they wanna have fun, Woah, girls just wanna have fun.....That's all they really want, some fun. When the workin' day is done, Oh, girls they wanna have fun." Girls just want to have fun ( Cyndi Lauper)

today was my only day off this week( i work the weekend), so i decided to make it a fun day. i got an email from another thyroid cancer patient, and she said that on her doctor appointment days, she plans a really fun day. she eats out at a nice restaurant, and has "retail therapy". i love that term. i am a firm believer in retain therapy! so today, i started out with a few light chores, then i had my retail therapy. i went to a near by town for some shopping. i went to my favorite women's clothing store( all of the sales associates there  know my name!) and picked out a few things. i also went grocery shopping. some people hate to go grocery shopping, but i love it. i go to a mostly organic foods  store called Earth Fare, and i love to look at all of the produce and the unusual products they sell. did you know that you can buy almost anything "organic". they even have organic soft drinks. amazing.

after my retail therapy, i went back home for some zumba therapy. i had a blast again; i think i may have even enjoyed it more this time. i was able to do a little bit more of the routines. of course, they have one move called the "destroyer". it is not one of my favorites. even when i was in my 20's i do not think that my midsection moved like those instructors on the video. this work out is great for your abs, booty, and hips. just what i need! i have only done the first DVD. there are four- i think that you may need to get the basic moves down first before moving on. i have not used the toning sticks yet.( those are for the toning video). i shake them every once in a while when i pass the coffee table. lol

i may also do some spa therapy before i go to bed tonight. i have bought some new nail polish called " stroke of midnight" hahahahah.  i always paint my toenails, but i do not paint my fingernails. i keep my fingernails short, because of my work.  i wash my hands so much, nail polish tends to come right off in no time. but this one time i may just paint my nails with the stroke of midnight polish.my birthday is this weekend and i need to do something to celebrate(birthdays are really important to me now!). i am bringing cupcakes to work on Sunday. devils food  cupcakes with a coconut cream cheese frosting. i have never put those two together, but hey, what the heck. it sounds like fun to me.

Tuesday, August 24, 2010

" I get knocked down, but I get up again, You're never going to keep me down." Tubthumping by Chumbawumba

this has sort of been my motto. i always get back up. however, i broke a promise to myself and i have been feeling pretty bad about it. you see, i have researched, and read books, and gotten all of the information about my cancer that i possibly could. i have met things head on, cried if i needed to, and dealt with whatever health issues that came my way. the only thing that i did not want to know, and i promised myself i would not ask about, was what stage cancer i have. i have been in health care for over 25 years, and i have seen some people in stage two cancer die quickly, and others in stage four recover, or live for a long time. i have always thought that "staging" was just a guess, albeit, an educated one.

the other day on my lunch break, i was reading in my Thyroid Cancer book about ultrasounds. i thought that maybe the author had some insight as to why i will be getting another ultrasound in September. and right there on the page about ultrasounds was the criteria for staging thyroid cancer. i could have turned the page, closed the book or whatever, but instead i looked. i was not really surprised, i had a good idea, but to see it in writing was somehow heartbreaking. or really, hope-breaking. i have/had stage three thyroid cancer. certainly, it could be a lot worse. of course, i think that every thyroid cancer patient lives from scan to scan. i really do not feel like i can celebrate until i know that this cancer has completely and totally " left the building". and i will do whatever it takes, and with every bit of strength that i have in my body, to get rid of it.

maybe i needed to know my"stage" and perhaps i was not ready to know until now. so i got knocked down, and did something that  i had said that i would not do.i was depressed for a day or two, but i am feeling better now. it is just a label, and it does not mean, really,  anything at all. i am the same person i was before i opened Pandora's box, and i will continue to be as positive as i can be. i promise that i will get back up again. i always do.

Sunday, August 22, 2010

" No, you can't always get what you want, you can't always get what you want, you can't always get what you want, .But if you try sometimes, you just might find, you get what you need." The Rolling Stones

i was reading Mary Shomon's newsletter/blog the other day about the difficulty in finding an endocrinologist/doctor  that you like. she made some good points. she used her doctor as an example- things she does not like( her not taking insurance, and having to wait a long time in the office) and things that she did( using natural thyroid hormone,taking her time with her and being thorough). so i decided to write out a list of pros and cons about my doctor and see what won out. well, the pros are greater than the cons. that said, i am going to keep my appointment for the ultrasound/visit  the last of September, and see how i feel after that. i am going into the office armed with a list of my " wants" and expectations. the major one is that i need to be informed about test results in a timely manner. i will get a good chance to see how this goes because i will need to get the results of the ultrasound( i still do not know what in the world they are looking for,though). i am also going to bring my husband into the doctors office with me.   i do not usually like to "tag team" the doctor, but in this case it will be  helpful because your husband/partner might hear something that you did not. it happened when i saw the radiologist. i was so glad to have my husband there with me. not just for support, but i really did zone out at times. especially when he was talking about the pathology report/lymph node issue. if things do not go well, i will look for another doctor, exhausting as that may be. this is too important to leave to chance, or to be handled in a way that i am not comfortable with.

speaking of exhausting, i did zumba today!! what fun. i think that i burned as many calories laughing at myself as i did doing the video. the first, or basic video i might add. there are three more- and i am actually looking forward to doing them. i can understand now why my daughter likes zumba so much. i am not sure that i would be able to go to a class,though. i mean, my body does not move in certain ways that someone half my age does. but dancing is fun, and the music is very fun- samba, Caribbean,very upbeat. i am afraid that it will hurt to breathe tomorrow, but it was worth it! i am not sure if abs of steel are in my future, but maybe a bowl of ice cream is!

Friday, August 20, 2010

" Everybody get on the floor, let's dance! Don't fight your feelings, give yourself a chance. Shake,shake,shake,shake,shake,shake, shake your booty! shake your booty!!" KC and the Sunshine Band ( Shake your booty)

at the first of this month, after paying my bills, i had a little extra money. i decided to treat myself with a small gift and narrowed it down to two very different things. my daughter is crazy about zumba classes. she goes at least two times a week, and has a blast. i happened to be channel surfing in TV wasteland the other day , and came across the Zumba infomercial. first of all, i am pretty " sensitive" to infomercials. if i start watching one, it is pretty much all over for me. the good thing is that i do not order these " info products"  directly on line or by phone because (luckily) i am afraid of giving out my credit/debit card numbers. no, i will patiently wait until the wonderful new product comes out in the " as seen on TV" section of ( usually) Walmart.

the zumba DVD looked like so much fun! everyone was laughing and having a great time. and talk about those abs! wow, could mine look like those some day? probably not, i have had two children and the last one was by c-section. i think that this would be a fun work out,though and would help me get some more of my strength back. i have lost about 25 pounds during my whole adventure- since i found  out about my cancer back in April. i lost most of the weight on the LID. i believe that  you can lose about 50 pounds in a couple of weeks if you follow that diet!   ( i think that  Chelsea Clinton  must have used this diet to get ready for her wedding! lol) i do not want to gain any of the weight back, and frankly having lost my thyroid, i am worried about weight gain anyway.

that brings us to the second choice. a beautiful, Cuisinart ice cream maker! you can have ice cream in 20 minutes with this baby! just keep the bowl in the freezer and you are ready to go. i have a weakness for ice cream ( it was NOT on the Low iodine diet). i could even ( it might happen) make something low in fat, or fat free( probably not going to happen). sooooooooooooooo, i checked amazon.com. now,  i am not afraid of giving amazon.com my debit card number. usually i order books or music, but occasionally i will order something else. turns out, they had both of these products! what now?? in the end,no pun intended, the healthy choice won out.hey, the zumba DVD even came with " toning sticks"! i will have to admit,though, that i have not "zumba-ed" yet. the kit is sitting on my coffee table looking at me. and all i want to do is have a big bowl of ice cream.

Tuesday, August 17, 2010

"Watina. Sitina.Dimuretina tuma lugunema mua. Mahati ayudante lanugunina" Watina, by Andy Palacio

no, my fingers did not slip off of the keys! this is in a language called Garifuna, and is spoken in a coastal region of Belize. it is a  unique language, and nearly extinct. the CD is beautiful- i love the music. of course, i can not understand the lyrics. good thing the CD comes with translations. this song, in part, says: " Oh, God, please change my life this year. I ask you to change my life but please do not take it away. Please leave me here where I can be a bothersome spirit". Amen to that!

i found out about this CD because my son went  to  Belize a couple of years ago to help teach music to some very enthusiastic band members. i was in awe of him for going to tackle this mission, and he was in awe of the students and their parents.they love music there! every small village has a band- no sports teams, but community bands, comprised mostly of  teenagers. the mothers make the costumes, and everyone is so proud of these kids. they have a competition each year to see which town has the best band. the way i see it, everybody wins. my son had to learn to play every instrument as a music major, but he is a saxophone player extraordinaire!! they were so impressed that he could play the " Pink Panther".he almost got tired of playing it for the kids.

the thing that impressed me, was the hope that these band students had. they wanted so much to someday come to America, and play at a band competition. if i ever win the lottery, that is what i am going to do with the money- fly those kids up here to perform ! i also have to say my son said these students and their families were some of the nicest people that he has ever met. they took turns "feeding him supper", and really welcomed him into their community.

one of the most important words to me this year is the word "hope". i hope for better health and more time with my family and friends.those band students hoped for a wonderful band, but mostly i think, a chance for a better life. what do you hope for?

Sunday, August 15, 2010

" Thank you for letting me be myself, again..." Sly and the family stone

my husband and i went to see the movie " Eat,Pray,Love" this weekend. i enjoyed it, he enjoyed parts of it. i think it is probably a" chick flick" as they say. i think that the main character, Liz, went  on search of herself, as well as trying to enjoy being herself and not someone whom  she thought she should be.sounds easy enough, doesn't it? just enjoy being yourself and accept yourself for who you are. i really love elderly people and young children. they are not pretentious, and they say what they mean, and mean what they say. this is a lesson i am learning- to accept myself, and to be happy with whatever each day brings me.i am a " type A" personality, a control freak, really. boy, when you have cancer,  control goes out the window!not that you should sit back and accept things that you know are not right of course, but there is only so much ( health wise) that is now under your control.

i went to church today, for the first time in several months. i did not want to go right after my surgery, it was the "scaring the children thing". and then of course, i did not want to literally " light the whole place up!" and i certainly had no intentions of asking anyone of childbearing age if they were pregnant! ( the last time i asked that it did not go so well!).so i waited until i was sure that i had cooled off sufficiently. it was good to see everyone again, and to thank everyone for saying so many prayers for me. i really do believe in the healing power of prayers. i was amazed at how kind people are about doing this.

one of my husbands coworkers told this story about her little girl. she is about 3 years old, and just as cute as she can be. her mother had to take her to their church for the "receiving" part of a funeral. now for those of you unfamiliar with a "receiving" it is a time before a funeral, where friends get to offer their condolences to the family of the deceased. i am not sure, but i think that this is a southern custom. anyway, as they were leaving the church, the little girl said at the top of her voice" Boy was that fun! i really had a good time!".her mother was pretty embarrassed,but the little girl had just said what she thought was appropriate to say at the conclusion of a good party. i thought it was great! i sure hope at my receiving ( much later on down the road of course!) that someone says they had a great time.see what i mean about children saying just what they think?

Friday, August 13, 2010

" Well, crocodile rocking is something shocking, when your feet just can't keep still. I never had me a better time, and i guess i never will. Oh! lady mama, those Friday nights, when Suzie wore her dresses tight,. And crocodile rocking was out of sight..." ( Elton John)

last year my son got married. ( i am glad that it was not this year- i would have hated to rain on his parade!). among the many decisions we had to make, though not as many as the bride's family of course, was what song the groom and the groom's mother would dance to. i thought of many sentimental songs- my son and i like " old blue eye's " songs. but i did not want to be crying my eyes out on the dance floor. so i thought, how about a song that would really tell everyone about we relate to each other? we always have the best time out- we are laughing constantly. so i thought i would choose a song- an upbeat song, and yes, a funny song that we both liked and could dance to. i will have to admit that the " could dance to " part was a little iffy. i can sing a little, and i like to dance, but dancing with the stars has me way, way,way on down the list of perspective contestants.

i told my son what song i thought we should dance to, if it was o.k. with his bride of course- i did not want to upset anyone. she, being good natured, humored us and let us have our moment on her big day. i have to admit i almost backed out on this- but my son had told his college buddies what song we were dancing to, and they said they thought he had the coolest mom ever, so jeez now i had to do it. so the time came for us to dance- it was near the end of the reception, and some of the guests had left, and most of the rest were feeling pretty good, if you know what i mean. we got up there and stood in the traditional " waltz pose" and waited for the d.j. to start the song. when Elton started to sing, i think you could hear every one's jaw  hit the floor. my son and i had made up a few "crocodile moves", but basically we just crazy danced. and laughed, and laughed and laughed. it was one of my daughters favorite moments of her brothers wedding, and the only one that made her cry.

i have thought about this a lot since i have been sick. how we must make the best of every day, and do the things that make us happy, even though they may seem a little silly. i would not take anything for that dance with my son- but i will have to admit that i am glad that it did not end up on the Internet . of course, there is a video somewhere.......

Wednesday, August 11, 2010

" You're out of the woods, you're out of the dark, you"re out of the night. Step into the sun, step into the light. Keep straight ahead for the most glorious pace, on the face of the Earth or sky. Hold onto your breath, hold onto your heart, hold onto your hope. March up to the gate and bid it open--open--open." ( from the wizard of oz)

this is referred to as the " words of encouragement song". i do not want to count on too much, too soon, - i am cautiously optimistic, as they say. but i do think i can be happy and certainly hold onto my hope! i keep a copy of these lyrics in my lab coat pocket, and when i start to worry a little, i look at them. i guess at this point, thyroid cancer patients live from scan to scan, so to speak. i am going to try to think positively and look forward.

as for a new doctor, i have  not decided as to what i must do yet. i would like to go to a doctor who has time for me, knows what they are doing, and would return my calls( on something important, of course). is this too much to ask for? i am scheduled for an ultrasound on September 30th. i have no idea why- HELLO, the butterfly has left the building! i guess they are checking up on my remaining two parathyroids? i have no idea exactly where they are, by the way. the surgeon ( i asked him several times) would only say that " he threw them back in there". he was a very good( i sure hope) surgeon, but he drove me nuts.

today, someone asked me if i was " done with my cancer". well, that is an interesting question. as i have said before, cancer does not define me, but it is part of who i am. i have had many blessings i think from having thyroid cancer. i have really learned what is most important in life, and small things do not bother me so much anymore. i think i am more compassionate with people at work- if someone is "behaving badly" i try to figure out what the problem might be instead of taking things so personally. it is tempting at times, to fire back at someone when they act unreasonably, but that only makes things worse for everyone. i am far from perfect on this( i have red hair, o.k.!!), but i am making progress.

i do not think that anyone is ever " done with cancer". your life changes in so many ways,some good, some bad. i am so fortunate to have the support of my family and friends. i am thinking about going to a cancer support group. i live in such a small town, i am not sure one is available. there is a support group an hour away from here, but i am not sure that would be practical.for now, i just enjoy writing in my blog and getting comments from other thyroid patients. it is good to know that you are not alone.

Monday, August 9, 2010

"R-E-S-P-E-C-T, find out what it means to me,R-E-S-P-E-C-T,.....I'm about to give you all my money, and all i'm asking in return, honey.....R-E-S-P-E-C-T!!" ( Aretha Franklin)

Aretha gets it, and today i got some respect,too. i went over to the hospital and got my records- the blood work, the x-ray, the whole body scan, and best of all, the pathology report! i had to sign a wavier, and let them make a copy of my drivers licence- it is a good picture,actually. the only thing, i had straightened my hair in it, and of course i am not doing that now. the receptionist  looked once or twice, but i guess i do not look like a criminal or anything, so i got my results!

first of all, i knew about the cancerous tumors in both sides of my thyroid that  they removed, of course. but i now also know that those two little pesky parathyroids that when to Paraguay, well they were cancerous,too. my tumors were unencapsulated,diffusely infiltrative with vascular invasion present.( o.k. if you are keeping score, cancer-1, bea -0) it just means that it had spread to my lymphatic system.

o.k. now for the good news. even though my doctor did not order it, the lab checked for my thyroglobulin antibodies anyway. i have a few of them, but my thyroglobulin was in a good range. so this is not significant really, but it is not bad news either.

results of my chest x-ray: no acute cardiopulmonary disease. no mass or metastasis.( i have now scored major points on this one!)

results of full body scan: focal uptake in the anterior neck( i.e. the I-131 went to my neck like bees to honey, no pun intended, and fought the remaining cancer cells). no evidence of distant metastatic disease to head ,neck,chest,abdomen,or pelvis. no evidence of distant metastatic disease. local activity in the anterior neck only. translation: it seems that maybe, just maybe, it was confined to my thyroid and neck lymph nodes areas- and that hopefully the I-131 did it's Jedi magic and wiped the remaining storm troopers out. YEAH!!!!!!!

now that i know the results, i can breathe easier, live better. i have to make a decision as to what doctor i will be going to in the future. i just do not think that i can go back to my endo. this was not handled the way that it should have, could have, been. i know that every cancer patient sort of holds their breath until the results from the next scan. this will be coming up for me the end of December, or the first of January( depends a lot on when my insurance will pay for it) but for now, it is party time! i am so thankful for the way that this turned out. thanks to my family, friends, and cyber  friends who read my blog and have been thinking/praying for me.

Friday, August 6, 2010

I have finally decided to get off of the ROLLER COASTER!

well, i had to call my doctor again today. i have to leave a voicemail with her nurse- as usual. the nurse called me back and said,"oh, you misunderstood what i said. the doctor is not going to call you back.she said things are fine- you can go back to work." i asked her about my blood work- the hospital faxed it to them for the third time. she said they had not received it and i could bring it to my next appointment at the end of September! enough is enough!! i think it is not being unreasonable to ask for 5-10 minutes to speak to my doctor and get my test results. and not just any test results, but probably some of the most important test results of my life! i wonder if my doctor even read the pathology report. as the radiologist told me, she ordered the wrong dose- too small. i am glad that he caught it. what if i had gotten too small of a dose, and then later on.....

my doctor is a very nice person, but i do not think she has enough experience dealing with thyroid cancer patients. so, i am going to drive to the hospital where i had the chest x-ray, full body scan, and the blood work done and get a copy of the results. i have to sign a consent form, and while i can look over the blood work( it will be in written form) my scan and x-rays will be on a CD. the technician said that the CD would not work in my home computer( i bet some people have tried that!) but really, i have no idea what i would be looking for anyway. i have made an appointment with my family doctor for August, 18th. i am going to talk to him about getting a referral to another doctor. i just have to find one that has dealt with thyroid cancer patients. " a thyroid cancer endocrinologist?" if there is such a thing.

you know, i have done exactly what the doctors told me to do. i have followed their instructions to the letter- the LID, thyrogen injections, tests,etc. i just expected a little of their time to explain the results to me. i do not think that is unreasonable. now that i have a plan of action, i feel somewhat better. of course, i will never feel completely at ease until SOMEBODY can go over my results with me, as well as explaining what i will need to do next. i believe, from reading in my thyroid cancer book, that i will need another full body scan in six months( that would put it about February,2011). then, if that is o.k. i think that the next scan comes in about a year? there seems to be quite a variation in this, from what i have read and heard. i wish i could tell everyone who has read my blog something definite. maybe this is just a reminder that every patient needs to be diligent in keeping in contact with their doctors, and not taking no for an answer. we all need to be informed and empowered-to the best of our abilities.

don't worry, i will keep everyone informed as to what happens with me. good luck to everyone who is going through this process( i hope you have a better experience than me!) and blessings to everyone who has had to go through this already. i am thankful to Mary Shomon for being a patient advocate, and for hosting her web site that informs and helps all thyroid patients.

Thursday, August 5, 2010

Just a note, part two

well, the doctor did not call me back today, as promised. i can not truly celebrate this moment until i hear it all from the doctor, herself. i have had too many different opinions- remember i had four opinions on the lymph node pathology, until finally the radiologist told me the truth. i am not accusing anyone of deliberately lying to me, but i wish that they had had  all of the facts before they gave me an answer. that is why i am not getting too excited about the scrap of information the nurse told me yesterday. i want to hear it from my endo, and i am going to ask her questions, to make sure that she has received all of my test results. i also know that i will not really be able to consider myself a cancer survivor until i have had a few more "clean scans". here is a pet peeve of mine( besides being told thyroid cancer is the "good kind") i do not like the terminology "clean scan". does that mean that we somehow are considered dirty when we have cancer?? for my part, i think i will refer to the "clean scans" as happy scans. so hopefully i will get good news from my endo tomorrow( if not, i will start calling again until i reach her) and she will tell me that i got a "happy scan".

Wednesday, August 4, 2010

Just a note.......

well, my doctor did not call me this morning, as planned. i called her nurse back ( got a voicemail) and asked them to PLEASE call me back with some information! late this afternoon, i'll admit i was on pins and needles the whole day- and shed a few tears- the nurse called me back. she said that the doctor had STILL not received the blood work ( maybe the third time will be the charm), and had not seen the chest x-ray, but that "what she had seen of the whole body scan, and this is not official(?)  looked good."
o.k., it is not what i had hoped for, but i will take it. i am cautiously optimistic, as they say. my endo is supposed to call me in the morning- hopefully she will. i am going to ask her some questions, and hopefully she will be able to go over everything with me. just as soon as i know, i will let everyone know. i really appreciate every one's concern and comments, prayers, and support. you just do not know how much it means to me!:) 

Tuesday, August 3, 2010

" I'm up on the tightwire, one side's ice and one is fire...its a circus game...one side's hate and one is hope...a comedy of errors and i'm falling..." Tightrope by Leon Russell

yes, another comedy of errors. my endo's office finally called. the nurse said that they had received the reports, except for my two blood work reports.( one of those was faxed twice- i know because i was there when the hospital lab  faxed it the second time). i asked my doctors nurse if the doctor would be calling me back today with any results. she said no, they were too busy!! the doctor is supposed to call me back first thing in the morning,though.

also, i had to call the hospital lab and ask them to try to locate my blood work. luckily, i have kept all of the orders, and any paper work that i could get my hands on. i had my patient ID # to give them,and i am to call them back in about 30 minutes. i gave them my doctors new fax number, again. i am not so worried about the blood work,though. as i said, the thyroglobulin test that they did not include the test for antibodies, so it is really not that reliable. the presence of thyroglobulin would indicate thyroid cancer cells somewhere else in my body, but since 25% of the population, mostly women, make antibodies against our own thyroglobulin, if you do not test for the antibodies, you will probably get a false negative.

i have been a little crazy today, with worry, so sorry that this is not more uplifting. i will be o.k. though. tomorrow my husband is off, so tomorrow is probably a better time to get results, even-hopefully- if they are good ones. i am just ready to get some answers so that i can plan my strategy  or whatever, and move on to the next step in this process. my advice to anyone going through this, is keep every shred of paperwork that you can get your hands on- just in case. follow up with phone calls. i know that  i am not the only patient my doctor has to take care of, and i know i have to be responsible for my own health care. her nurse probably thinks that i am a royal pain in the you-know-where, well, i know she thinks that!! lol

i will let everyone know sometime tomorrow how things turned out.:)

today is d day

i have started the process. the process of finding out about my test results, that is. i called the hospital where i had my chest x-ray, blood work, RAI, whole body scan,etc, and asked if they had faxed the results to my endo. they had the results( why could they not have told me something!!?? this is making me crazy- maybe crazier is  more correct) and they had faxed them to the wrong fax number! it was not their fault- my doctor has moved to a new office, and they had the old fax number. so i called my doctor's office, and got the new fax number. then i called the radiology department back, and gave them the new number. the receptionist at my endo's office told me that my doctor would call me with the test results. i am assuming that will be sometime today. i called my endo's nurse- she has her phone on voicemail always, and left a message. i am on pins and needles as they say. i will blog again today with my results. i know that the more important results will be my 6 months, and then after than, my year body scan. but it is important that i know if this cancer has moved to my lungs or bones( that is where the radiologist said that thyroid cancer is most prone to go- if you have it in your lymph nodes, as i did)

please keep your fingers crossed for me!!

Monday, August 2, 2010

" She put the lime in the coconut,drank them both up, called the Doctor, woke him up and said: Doctor, ain't there nothin' i can take to relieve this belly ache??" Doctor: "put the lime in the coconut and drink them both together.....then you'll feel better-- call me in the morning." " Coconut " by Harry Nilsson

boy ,have i felt like this silly song! i got four different answers on my "lymph node issue", before finally the radiologist got the pathology report and told me the straight as to what was going on. it seems at times like a comedy of errors heading straight for me ( paraphrasing Leon Russell). but really, i am finding out the hard way, you need to stay on top of things and really trust yourself. if something does not seem right to you, it probably isn't. i looked at the orders my endo has sent to my radiologist, who would be administering the RAI. she had ordered 100 milicuries. but after seeing the actual pathology report, the radiologist said that i would need 150milicuries, since it had been in my neck lymph nodes. thank goodness someone caught that! i would have hated to go through the whole ordeal, and not get the correct dose! all and all i do recommend getting the RAI. i know there are some side effects- for me the nausea was the worst thing. the soreness in my salivary glands only (thankfully) lasted one day. and i was very tired- but aren't all hypothyroid patients really tired??!

i am going to give my endo until Wednesday of this week to call me with all of the test results. i have had a complete blood profile, thyroglobulin test( although unfortunately they did not test for the antibodies- it is not a very good test without this- i will talk to my doctor  later about this), a chest x-ray, and of course the whole body scan. she is in a new,huge office. there are so many people that you have to get through before you can talk to her, including her nurse(!). if you hear that i have been arrested for harassment, well, i guess it could happen! seriously, i am going to keep calling until i get to talk to my doctor. i need to know how these tests came out before i go back to work next week. i have been pretty patient until now. everyone has their limits, and i am just about to reach mine.

that said, i have been fortunate on a lot of fronts. the surgeon, even though he was not quite honest with me, did a   good job on my neck. my scar looks pretty good. ( i have ceased to look like a Frankenstein relative ).  of course, the important thing is that he removed all of the thyroid- getting all of the tumors, on both sides. he saved two of my parathyroids- the other two moved to Paraguay. and my voice is not back to what it was, but i think that he did a good job with my vocal cords. i think that in time, i will sound more like myself. of course, squeaky voices seem to be popular these days, so that is a good thing. despite my difficulties in getting in touch with my endo, i really do like her. she is very thorough and the best doctor that i have ever been to. it was not her fault that the surgeon did not get the pathology report over to her. ( he had about a week, and their offices are so close, that if you were any good with a rock, you could easily throw one from one office to the other!) so i am continuing to rest and actually enjoy this week off. i thought that i would have to go back to work today, but the radiologist said not until next week. bless his heart! i feel now that i can have the time to recover from my surgery,as well as not expose everyone at work.