"....sometimes the lights all shining on me. other times, i can barely see. lately it occurs to me, what a long, strange trip it's been. " Trucking, by the grateful dead

"testing time " puts me in a strange mood. i will admit it. so, here is the good news: no goblins in my neck and no thyroglobulin in my bloodstream. when my endocrinologist told me this, she looked at me and said, now why are we doing this every six months? ( here is the bad news). after a very pregnant pause, during which time i was holding my breath- so long that i think i could dive for pearls now, she said, oh i see! don't you just hate it when your doctor is reading the information on your chart and she/he gives you THAT LOOK. and by that look i mean that she is surprised that you are still  sitting there before her.

you see, i had one bad test right after my huge treatment dose of I-131. i had thyroglobulins out the wazoo in my bloodstream. little darth vaders if you will, going after other parts of my body that were just minding their own business. i found out  about this from the nurse. now everyone knows that only the doctor gives you bad news. but on this day, and yes i was at work, the nurse called to give me my results. in her defense, she did not have any idea of  the size atom bomb she was dropping on me. i was of course, upset, and left work early that day. my daughter asked me why don't they do something? can't they give you more of the I-131?   ( what a pleasant thought!). when i got my treatment dose, the radiologist told me that my dose was so large ( 155 milicuries) that they could not administer more of the I-131, even if they wanted to, for at least six months.

when i went for my results this time, my doctor told me that she had no idea what had  happened to me. to have one bad test, and then three good ones is unusual i guess. she told me that she only  has one other patient who has done the same thing that i have done-had  a bad test, and then for seemingly no reason, gone into remission. she told me that she could not begin to say that i am " cured",though, and i have to continue on with the every six months ultrasound, bloodwork, etc, i have mixed feelings about this. while i get majorly stressed out about the testing, i think that i would worry more, considering that one bad test, if my doctor did not do the testing every six months. i have not explored treatment options if i were to have another bad test. i  assume that it would mean another dose of the I-131, and perhaps radiation if it had reoccurred in my neck area.

but for now, life is good. i am going back to zumba this week( boy do i need it!) whether my knee is up to it or not. i just have to make it lower impact, i,e. not try so hard to keep up with the 20 year olds in the class. yep, i am going to wipe the dust off of the gold coins on my belly scarf, dig my exercise tee shirt out of the wash, and pray that my exercise pants still fit! i am truly thankful that i received good news, and i plan to make the best of it. i will be just fine, that is, until september.............

" you go back, jack, do it again, wheels turning 'round and ' round, you go back, jack, do it again. " steeley dan

tomorrow it is time for my six month cancer check up. my husband and i are driving down to raleigh and i have an appointment for blood work, and also an ultrasound of my neck. the ultrasound will check for goblins( aka, growths that should not be there- perhaps caused by rogue thyroid cancer cells). the blood work will be checking for thyroglobulin and thyroglobulin antibodies- two markers for thyroid cancer cells, also rogue, that may be causing mayhem somewhere else in my body. my reveal show is next week, when i have an appointment with my doctor. she will go over my results, and hopefully all we will do is schedule the repeat  tests six months from now- which will be in september.

i have ambivalent feelings about these six months check ups. of course, i am thankful that my endocrinologist keeps a close eye on things. i asked her one time if five years was a good " everything is o.k." marker. she said, " well, actually, i just had a patient come back who has had a recurrence after seven years. " bummer.  this may, i will have been in remission for three years. i guess i have a while to go before i can assume that everything is o.k. every time i have these tests, i have days of self reflection, sadness, joy, and yes, sometimes, anger. i have never asked " why me?", because in my line of work i have seen so many good people dealing with health issues much worse than i have. i guess my " anger" comes from the realization that i may not be around to see all of my grandchildren, or  enjoy time with my husband, or  support my children. i am thankful for every day that i have with them, and hopefully i will have a lot more time to be with them.

next week, after my doctor's appointment, i will blog and let everyone know how things went. until then, happy st. patricks day, and bring on spring!

TED- no, i am not talking about a little teddy bear who presented at the oscars this year, and has a penchant for being naughty, i am going to try to discuss THYROID EYE DISEASE, aka, TED

in researching this subject, i found out that i really do not know that much  about TED. nor, it seems, does the medical community. TED can be present- and it is  most often diagnosed in hyperthyroid disease, namely, graves disease. it can cause extension of the eyeballs- a classic symptom. it is an autoimmune disease, that sometimes hangs out with another autoimmune disease- hashimoto's disease. hashimoto's disease is a hypothyroid condition. so, i will tell you what i have found about about TED, but i will encourage anyone experiencing eye difficulties of any sort, to please see a physician. while your doctor is the only one who can make the diagnosis, you- as always, and in all medical conditions- have the final say in your treatment.

some symptoms of TED include: dryness, a gritty feeling in the eye- you know, like you have sand or something in there, excessive watering of the eye, pain upon looking up or sideways, bulging of the eyeball, double or blurred vision, redness, irritation, sensitivity to light or wind, just to name a few. of course, some of these symptoms may be misdiagnosed as" pink eye" ( a bacterial infection)  or allergies. so how do we know?

some patients have reported that they have more TED symptoms when their thyroid hormone is too low. others may need to reduce their thyroid level dose- those with graves disease, perhaps. a visit to an ophthalmologist ( eye doctor) may be in order to obtain a diagnosis. it is good to have your thyroid level checked, as well as a thyroid-stimulating antibody test. obviously, you need to choose a physician wisely. someone with experience in  treating TED. there are other, more costly tests- CT  or MRI tests for example.

treatment depends on the stage or severity of TED. steroids are an option, but to be honest, i am not a big fan of steroids. personally, i think that steroids have multiple side effects and there is a chance that when a patient stops taking the steroid for TED symptoms, they may become worse. of course, as with ANY medication, you have to weigh the benefits versus side effects before deciding on a course of treatment. simple treatments include artificial tear drops and/or a lubricating ointment.

when i was researching this topic, i was frustrated in how little is known about this disorder. if you are a thyroid cancer patient , like me, and have received RAI as part of your treatment, then constant eye watering may be a side effect of the RAI and not necessarily TED. this constant watering may be caused by the RAI blocking a tear duct. if this is the case, a physician can possibly un-block the tear duct, and that may take care of the constant watering.

here are three more things to note: 1) TED can get better on it's own. 2) smokers are way more prone to TED than non-smokers and 3) there is a website which is supported by the Thyroid Eye Disease Association. i suggest that anyone with concerns, or who feels that they need more info on this subject check it out. the TED association goes deeper into the details of treatment, symptoms, etc, and would offer more support for those suffering from TED.