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.

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.....

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!!

"Hello,hello baby you called? I can't hear a thing. I have got no service in the club,you see, you see. Wha-wha,what did you say,huh? You're breaking up on me. Sorry, i cannot hear you, I'm kinda busy, kinda busy.......Call all you want, but there's no one home, and you're not going to reach my telephone. We're sorry, but the number you have reached is not in service at this time. please check the number, and try your call again later. " Telephone, by Lady GaGa

o.k. i had blood work done on march 31st. i went in for an ultrasound( it was good they said) and a doctor's visit. while i was there, the doctor sent me down to the lab for some blood work. as i said in my face book page, if they need both hands to carry all of the tubes they need to collect, well- you are in trouble. the med tech was good at her job though, and my one good vein hung in there until it was all collected.

time passes. no word from my doctor's office. since it has been a little more than 10 days, i decide to call about my results. i am not particularly worried- the doctor would call if something was wrong, right? so i have to leave a message with the receptionist. she said- oh, the doctor will call you back. uh-oh. one rule we all live by is that when they say that the doctor has to call you back, it is not very good news. if the nurse calls, it is usually fine. no calls from the doctor. so i call the office back- she says this time that the nurse will call me back. maybe the receptionist just mis-spoke and  the the news is not that bad? this morning, i called the nurse back, yet again, and she said- oh, my thyroglobulin test came back a 2. a 2????? it is supposed to be zero, or close to it at least. and a 2?  a two what? a 2.0 on the scale for earth quakes? a t-2 tornado? when i quizzed her on this, she said that the doctor would call me back. guess who has not heard from the doctor yet.

i see a papillary thyroid cancer specialist a week from today. she practices at duke hospital in durham. i called her office, even though she has not seen me as yet. she has all of my records-biopsy,pathology reports,etc, and also the last questionable blood work that i had done in march. i asked( more like begged) her receptionist if she could answer a few question. she said, sure, the doctor will call you back. is that like " the check is in the mail"? am i on some big "NO CALL LIST" and just do not know about it yet?

i had to go home early from work today. the discussion i had with the nurse reminded me of the day that i got the bad news about my thyroid cancer. i was at work then, too. maybe i am just worrying about this too much. maybe it is not a big deal. what is another round of I-131 among friends? anyway, i can not help but worry and i can not find any web site that has any sort of reasonable thyroglobulin test result numbers. there is quite a large variation, from what i can tell. and one site suggested a pre-treatment level be drawn for comparison. ( gee,  wish i had known about that earlier)'

i will of course keep everyone informed about my situation. and by the way, no matter how you feel about Lady GaGa and her wild outfits, her music is great for Zumba.

a guest blog from another cancer survivor

Wendy joins us as a guest blogger with this article.  Wendy resides in South Carolina with her husband and two children.  She works full-time.    As a result of her thyroid cancer experience has most recently started the Myrtle Beach Thyca Support Group.  In addition, she and I are in the process of starting The Thyroid Necklace project to help provide support and information to other thyroid cancer survivors.

A brief description of her thyroid cancer is quite a journey.   She scheduled a doctor appointment after experiencing difficulty sleeping to discuss options for a routine goiter removal.  In February 2010, she was diagnosed with papillary thyroid cancer and in March 2010 she had a 6 cm carcinoma removed during a near total thyroidectomy.  Recovery from her surgery included RAI in July 2010.  Difficulty with her voice led to further tests in the fall and in November 2010, she underwent a right neck dissection removing 11 lymph nodes, 2 of which were confirmed papillary cancer.

Top 12 things you can do for someone with cancer:

1. Offer encouragement. Don’t just dwell on the bad news of my diagnosis. But don’t ignore that what I am fighting is scary and life changing. Just being there to listen, visit or hug can be worth a lot.

2. Pray for me. I can use all the help I can get to fight this disease.

3. Offer laughter. Laughter is an awesome message. While I am fighting a sickness I still find things funny. It’s okay to laugh and many times it’s very needed. So share your jokes with me.

4. Call or visit me. While this is a time that I value friendship and relationships, going out can be a challenge some days. Call to make sure that I’m up for a visitor and then drop by. Just chatting or watching a favorite movie together can be so rewarding for me. Take the initiative to contact me first. When you struggle with fighting this disease, you don’t want to burden others anymore than you already are, so I’m less likely to call and ask you to come over. Please be understanding if it’s a day I need rest and know it’s not personal.

5. Offer support to my family. Our lives have changed and it wasn’t by choice. My children still want to be able to participate in normal activities. So if you could drive them to birthday parties, ball or band practice or to the mall to shop around the holidays, it would be most appreciated. They deserve some normalcy in their lives. I’m not asking for a babysitter, just a helping hand so my child can participate in their normal activities while his/her parent is fighting cancer.

6. Bringing over a meal can be such a relief. While I am seeking treatment or feeling sick, just a hamburger helper meal for my family can be a huge relief for me.

7. Drop a note in the mail to let me know you are thinking of me. When you are fighting cancer, it’s easy to get discouraged. That cheerful note in the mailbox may be just what I need on the day that receive the phone call from the doctor wanting more tests.

8. Offer to drive me to doctor’s appointments. There will be times along my treatment process that just the act of getting in the car and driving to an appointment is a monumental task. While family members may be willing to go with me, they may have limited time off from work. If you are free, it could be a huge assistance to drive me to a doctor’s appointment and give me some much needed time with a dear friend.

9. Run errands for me. Nothing is more exhausting than trying to go place to place for errands. So if you’re out anyway, you could help by picking up the dry cleaning or a few items from the grocery store or Wal-mart. Maybe you could pick me up a few books to read from the library and drop then off for me to read while I’m sitting at my doctor’s appointments.

10. Any routine tasks you are willing to assist with would be a tremendous help. Sometimes just rolling the trash to the curb, vacuuming, or sweeping the floor can really help us out. Don’t think anything is too small.

11. Help me to feel as normal as I can during this time. If I’m worried about a huge scar on my neck, help me find a nice chunky necklace to distract from it. If I’m having treatments and losing my hair, offer to help me find nice earrings so I can still feel feminine. If I’m fighting skin cancer, be willing to wear a big straw hat when we go out so I don’t stand out and feel different.

12. Realize that you are important to me. Take care of yourself. Be sure to do your neck checks, mammograms and pap smears, prostrate checks so in the event cancer does decide to enter your life, you can detect it early. Help promote awareness.

 thank you wendy for some great ideas! since my children are grown, i especially appreciated hearing about what others could do to help younger children cope with all that we are going through. i hope that other cancer patients can maybe print this out and offer it to others who are concerned, but really do not know what to do to help. 

" So we back in the club, get that bodies rocking from side to side, side to side. Thank God the week is done, feel like a zombie gone back to life, back to life. Hands up, suddenly, we got our hands, up, no control of my body. ....So dance, dance like it's the last, last night of your life, life gonna get you right. " DJ got us falling in love , by Usher

i have just returned from raleigh, and my endocrinologists office where i had my ultrasound and an office visit. things went pretty well, i think. my ultrasound was clear- no aliens growing  in there or anything. i did have to have a lot of blood drawn though- my endo is checking my thyroglobulins, and also my calcium among other things. remember i only have two little parathyroids working for me now. my calcium was low the last time that i had it checked, so we have to keep an eye on that. i asked my doctor if she knew where the surgeon put my remaining two parathyroids. he would not tell me( ?) but i just wanted to know an approximate location. my endo said that the surgeons usually "chop them up", sounds painful, and place them in the muscular tissue in your neck. i wonder if that is why i felt like i had swallowed a sock right after my surgery? anyway, by the parathyroids being in the muscular tissue, they can (hopefully) get some blood flow from that tissue and reattach. i swear, this reminds me of those birds- i think they are mockingbirds- who lay their eggs in another birds nest and let them take care of them. i hope my parathyroids are getting good care from my muscle tissue!! lol

also, i talked to my endocrinologist about seeing the papillary cancer specialist. she was just fine with this. she said that the other doctor would be doing my full body scan( some time this summer), and she would work with this doctor and share information. also, i found out that there is a doctor who works with the cancer specialist, who is a parathyroid specialist. depending on my blood work, i may need this guy's help. anyway, it is all good. i see the papillary cancer specialist april 18th, and i will of course let everyone know how that went. i have another ultrasound scheduled with my endo in september. wow, i hope that i can keep up with all of these doctors.

on an interesting note, i was in a zumba  flash mob last night! imagine this: the scene is a crowed art crawl in university art center. everyone is enjoying the art work- pictures, sculptures, as well as some unusual performance art( one "performance" was a guy in a beekeepers suit dropping tons of apples on the floor! try dancing around that!). our instructor turned on the music( DJ got us falling in love- some of the lyrics are in the title) and she starts dancing. then, the rest of us gradually join in! we are wearing all black, and i think look pretty cool. it was a little hard to dance with the people, art work, and those darn apples still rolling on the floor, but it was so much fun! there were a lot of video cameras there, and someone said that we would be on the local TV station. oh, brother- i sure hope they focus on our instructor, which they probably will. anyway, you gotta dance like it is the last night of your life. you should always do that, i think.

i am doing two blogs today- the one following this one was written by my friend, wendy. she is another thyroid cancer patient, and we have a really exciting project coming up soon. i will be letting everyone know about it when we launch our project. her article is about some things that you can do that would be helpful and appreciated by cancer patients- especially when they are going through surgery and/or treatments.