Friday, September 20, 2013

" what now my love? now that you've left me? { o.k. the surgeon took you out, i had cancer, but still....} how can i live through another day, { my synthroid helps } watching my dreams, turning to ashes {i have noticed my vision is not as good as it used to be- thyroid eye disease?} and my hopes into bits of clay. once i could see { again, the eye thing} once i could feel, now i am numb { not really numb, no, but my feet tingle sometimes } i've become unreal. " very loosely based on the lyrics " what now my love" by shirley bassey

sorry, i  had to poke a little fun at that song! it does bring up an interesting question,though, for thyroid ( or other) cancer survivors. what now? first there was the horrifying, up and down dips,catch your breath and hold onto your hat days of just finding out that you had cancer. i imagine that most people, like me, just spent those days adjusting to the "news", deciding on treatments, doctor and hospital visits, etc. there really was no time to think too far ahead.

next came the treatment and recovery period. reality is starting to sink in at this point. i took things in stages, or tried to. i waited a little while to find out what stage cancer i had( stage three), that sort of thing. i am a person who has to have information, but even i took a step back and slowed things down a little. there is only so much stress and worry that even  an expert worrier like me can handle at one time. i was fortunate to have great family support, access to good information, and i also discovered a network of fellow thyroid cancer survivors. no offense to family or friends, but NO ONE AND I MEAN NO ONE, understands what you are going through like another thyroid cancer survivor! it was so good to email my new friends and to make contact through my blog. and i have always considered my blog like a little" spaceship discovery"- traveling  through the blog-o-sphere looking for others like myself.( well, that may not be possible......).

now i seem to be in, literally, stage three of my journey- what now? i go for tests every six months- like clock work- and i would like to say that the testing anxiety is over, or at least a little better, but i can not say that at this point. i am not sure how it is  for others, but i still get anxious ( and my husband would say a little " testy") around my six months tests. i was under the impression that after 5 years or so i could stop these tests. but as i mentioned in an earlier blog, testing goes on for life after thyroid cancer. ( remember old 30% recurrence?)

i have a friend who is a colon cancer survivor. her cancer was detected during a regular "now you are 50 and you have to have this gosh darn colonoscopy" test- she was not having any problems. she had a small tumor and the cancer had spread to one lymph node. her prognosis after surgery and chemo are excellent, but she is a worrier,too. she had a scare last year- she thought her cancer was back and had moved to her chest, but found out that she had pulled a muscle doing something at work.i do not blame her for being cautious and having more tests. it is hard not to worry when you are aching somewhere. i was sure i had something wrong with my back until my husband said, " well, jeez, you did carry our 25 pound grandson up and down the stairs and all around this weekend". oh. that could probably be it.

the challenge is to be diligent about having the " required tests" and taking good care of yourself, versus being like a character from a woody allen movie.( i am afraid that i am moving towards the latter). live a good life, enjoy every moment that you have here on this earth without worrying too much. i have heard some people say " oh my cancer does not define me". well, i do not know if i would say that cancer defined me, but if my name was in the dictionary, and you cared to look me up, it would be part of the definition. that is just how it is. you had cancer, you got through it, but things will never be the same. and i do not mean that in a bad way. i thought that i always knew what/who was important in my life. now i feel like i have special glasses, and life has been magnified about 1000 times- i can see what is really  important.

so what now? i am still figuring that out. i feel pretty good ,especially since i have gotten my thyroid medication straightened out. i have thyroid testing starting next week- i feel confident that  i will live through it -although i might have a rocky day or two. my daughter has had her baby and i am going to take a two week leave of absence to help out a little. i am really looking forward to our time together.  past that, i am not sure what the future holds. but then no one has a guarantee, right?

Thursday, September 5, 2013

" 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 it's a sunny day." good day sunshine, by the beatles

my husband and i are on vacation this week. i guess it should be phrased as a "staycation" as we are staying home. our daughter is expecting her first baby- well her due date was this past tuesday and the little guy still has not put in an appearance! i have had my bag packed for so long that my clothes are all wrinkled. actually, i had to re-pack it a few days ago. our daughter lives about 4 & 1/2 hours away, so it is going to be a bit tricky to get there right on time. we thought we were being so smart in having this week off( next week we are scheduled to work 6 out of 7 days- it is our weekend to work). i think that gavin( our grandson) is going to be born next week- just our luck, right?

to cheer ourselves up, as he always does, we picked up  our other grandson  from daycare today. gabriel is 21 months old and a ray of pure sunshine. he jabbers on and on- i can understand about 50% of what he says and what a handful he is! we all had a nice lunch on the front porch, then we took a walk. i will loosely call it a walk because my husband and i took turns carrying the little guy on the way back home. my husband made the mistake of picking up a rock( he is re-rocking our bedroom fireplace) and putting it  in his pocket. gabriel wanted to help out, so he picked up a rock and put it in granddads pocket. then another one. then another one..... and before long, granddad was sagging!( where was my camera when i needed it!!??)  best of all, his shorts fell down. we all had a good laugh, and since we live in the country, the only other living beings that witnessed this were the birds, and they promised not to tell.

even with worrying a little about my daughter, when she will deliver, will the baby be o.k.,etc. i have to admit being off work has been wonderful. i have had plenty of things to do and i do not miss work. i think that when i retire- in a few more years- i will enjoy the time. i think that doctors blame "stress" too much for our health issues. (remember what happened to me? it was in my last blog). that said, i have sure enjoyed being away from a very stressful job. i think that my overall health has been better this week. i got to go to zumba yesterday- yeah! when i retire, i will be able to go to zumba at least three times a week. that is if i can still walk by then. you can bet that i will definitely  be wearing my silver coined belly scarf though. got to show them that this grandma can still ring up some sales!

there has been a lot of discussion about which thyroid medicine is better- which one to try now that some are not available. i think that this is different for everyone, and sometimes it is a trial and error process. no need to stress out about it, and personally i am sick of the natural versus synthetic argument. take the one that works best for you. period. equally important medicine is plenty of laughter, sunshine, exercise and ( if you are lucky enough) a healthy dose of a grandchild or two. this seems to be the best medicine of all- definitely the most fun.

Monday, September 2, 2013

" you better watch what you say. You better watch what you do to me. don't get carried away, girl if you can do better than me, then go. but remember, good love is hard to find, good love is hard to find, you got lucky babe, you got lucky babe, when i found you. " You got lucky, by tom petty

well, things never go quite like i want them to go. is this the same with you? i have an ultrasound and blood work scheduled for the end of this month. then, my doctor's appointment is on october, 3rd. my endocrinologist has decided that she needs to talk with me about the PET scan before we decide if " we" want to do it or not. o.k. i will lay out a few facts and then maybe there can be a decision made if " we" want to do the test or not. these are facts that i have gotten from the website. this website contains  a world of information for thyroid cancer survivors, and if you have not checked it out, you really should.

when i was first diagnosed with thyroid cancer, i thought that after, oh say, maybe, 5 years of testing, if things were good then i would be considered cancer free. well, that is not the case! i now know that while the prognosis for most thyroid patients is good, the rate of recurrence is about 30%. i see percentages differently than i once did . when i was having my thyroid nodules tested, the doctor said, " don't worry- only 5% of these nodules are cancerous." however, if you happen to be in the 5% whose nodules are cancerous, it takes on a whole new meaning. in other words, 30% looks pretty significant to me now. at the very least, it is a number to be concerned about. it is recommended that all thyroid cancer patients have lifetime monitoring.

those pesky anti-thyroglobulin anti-biodies (TgAb) . i have them. they make the blood work for the thyroglobulin basically worthless. sometimes, these disappear after six months. mine have stuck around- to annoy me, i think. unfortunately, i did not have the Tg or TgAb testing done before my surgery, so i have no baseline to compare my blood work to. that would have been so helpful, but i did not know about it then. that is one reason i try to get people to be informed- read all that you can about your condition, and keep all blood work and test records. you have to be your own patient advocate. it is recommended by thyca, and other sources, that if you have the TgAb, you need imaging studies done. i am not sure if this means just the neck ultrasound, or if it also means the PET scan. i have read various opinions about this. i do know that my radiologist- the doctor who administered by treatment dose of I-131- told me that when thyroid cancer spreads, it usually goes to the bones and lungs. i have only had one chest x-ray( the radiologist ordered it), and a few blood tests to measure abnormalities in my bones( ditto- radiologist). i am not sure if i need these repeated, or how often.

my surgeon told me that i had had thyroid cancer for several years before it was discovered. i wasted five years going to another endocrinologist who told me the reason i was so terribly tired was due to  " stress". i finally decided that i had had enough, changed doctors, and well- the rest is history. i do not want to be neurotic about my health or testing. i do want to be responsible and have the appropriate tests done, and treatment if i need it. i just want  to be informed about my condition and make good decisions about my health care. which really applies to anyone living with a chronic health condition.

so, the jury is out you might say on the PET scan. i will discuss things with my doctor and of course let everyone know the outcome. i am planning to take my trusty notebook along with me to my next doctor's appointment. my doctor is used to this. one time she even asked me to check something in my lab reports( of course i had it ) that was left off of my chart. never hurts to be prepared, i say!