Thursday, September 30, 2010

"..but there's a full moon risin', Lets go dancing in the light. We know where the music's playin', Lets go out and feel the night. ...But now its getting late, and the moon is climbing high, I want to celebrate, see it shinin' in your eyes.... On this harvest moon." Harvest Moon, by Neil Young

i got a pretty good check up from my endocrinologist. i had my "mystery ultrasound" and it turns out they were looking for lymph node enlargement- pretty much like i had expected. she saw no growth!! hooray! things look good on that front. i just found  this fact out, but the surgeon removed TEN of my lymph nodes in the front part of my neck. i have a numb spot there ( DUH) - the feeling may or may not return to that area. gosh, i did not know that i even had ten lymph nodes in my neck. lol. well, i guess now, i have ten less. she could not see my two remaining, over-worked and brave parathyroids. who knows where the surgeon put them. she said that she would try to find out from his surgery report. i have not seen this report- just the pathology report. my endo said that in his report, the surgeon sort of congratulated himself on this difficult surgery .GREAT..  i can see him doing that. brillant  surgeon, but  not a people person. my largest, but not the only one by far, cancerous tumor had burst (Yuck) and spread out into  the vascular system in my neck. things look good now, i guess those Jedi I-131 knights took care of the bad guys. but i have an ultrasound scheduled in 6 months. my endo likes ultrasounds better than full body scans. i do have a full body scan scheduled for  a year from now, but she says that ultrasounds and tests for thyroglobulin/thyroglobulin antibiodies are better indicators of a problem.

all in all it was a good and productive visit. i hope that we can communicate better in the future, but i will always get a copy of any test results that i have done going forward. my endocrinologist did not realize that i have only two parathyroids- that there was cancer in two of them. she also did not realize that i had cancer in some lymph nodes, or that one of the tumors had burst open. i had my copy of the pathology report and pointed that out to her.( i felt like we were in a conference- : " Now, if you will just turn to page 3- at the top of the page...") .  she also did not know that i had received a larger dose of I-131, 154.9 milicuries, instead of the standard 100 milicuries. this process has been a learning process for me. i firmly believe, even more than before, that we must all take charge of our health care. i am keeping a file of all of my reports, for reference and really for my peace of mind. i think that all of us should do this. i feel very lucky too, at this point. if i had waited only a few months longer before changing doctors, i would be in serious trouble now. that brings up the need for trusting yourself. trust how you feel- get things checked out no matter what others might tell you, if you feel something is wrong. my previous doctor told me my bad lab values, extreme tiredness,etc, was "stress". i really felt that something was very wrong, and luckily found another endocrinologist who would do the necessary tests. she saved my life- literally, even though sometimes i have to help a little with test results,etc. that is acceptable for me. i want to be responsible, and not depend entirely on a doctor to handle things for me.

now, for the first time since my diagnosis, i feel a certain amount of hope. could there be " bad thyroid cancer cells" lurking around in my neck to cause mayhem later. certainly. but also, there is the possibility that the I-131 did its job, and that i am on my way to calling myself a survivor.i am trying very hard to have a positive attitude, and not worry so much. i am thinking ( hoping) that my husband and i will have many more wonderful times to dance under the harvest moon. once again, i would like to thank my husband for his love and never ending support. i can never thank him enough.

Wednesday, September 29, 2010

" If it seems like i've been lost in lets remember; if you think i'm feeling older and missing my younger days......That's why i'm keeping the faith; ...You can get just so much from a good thing,you can linger too long in your dreams; say goodbye to the oldies but goodies, cause the good old days weren't always good, and tomorrow ain't as bad as it seems-.... i'm keeping the faith- Yes i am. " Keeping the Face" by Billy Joel

i tend to wish that this cancer had never, ever happened. i have wished to go back in time and nip it in the bud before it got this far- haven't most people thought this? sometimes i can not believe that i actually wanted to keep part of my thyroid- that i was upset that the surgeon said he was going to remove it all. there was cancer in the other side too, darn it!! thank goodness it was all removed. i can not say that i do not miss my "butterfly" ,but boy oh boy was mine ever making me sick! and right before my surgery i had the worse case of thyroiditis that i have ever had. some people i have talked to have never had this- and i am glad. but if you ever have had this- it is painful and i was afraid that the low grade fever i had with it would prevent them from doing my surgery. ( i took Advil for fever,pain,sore throat, right up to the very last day that i could safely do so; it might have caused excessive bleeding during surgery if i had not stopped five days beforehand) i could not believe that it was my thyroid's last stand so to speak, the final injury. but it is gone now, and hopefully things are going to get better.

i had an appointment with a rheumatologist on Wednesday. he is the one that prescribes Vitamin D- prescription strength- for me. my family doctor  sent me to him to be sure that i did not have lupus( thankfully no, i just had a badly behaving thyroid). he did some blood work and found that my Vitamin D level was extremely low.i have talked to a number of thyroid cancer patients who also have low vitamin d levels. i do not mean to say that just because your vitamin d level is low, you might have thyroid cancer. don't get me wrong! i just think that when you are getting blood work done, if you have not had this checked, you might want to ask your doctor to check it. vitamin d is the" man about town" in the vitamin world, so to speak. it can boost your immune system, and may  lower the incidence of certain cancers- especially prostate, breast and colon cancer. my doctor told me that it also helps with "fibromyalgia- like" pain. even if you do not ask your doctor about checking for this, you can get some over the counter. it is not nearly as strong, but it is worth spending some of your hard earned money on.

i also asked my rheumatologist to look at the results from blood work the radiologist ordered. the radiologist said that thyroid cancer, when it spreads, goes to the lungs and bones first. i knew that my chest x-ray was o.k., but no one had explained the blood work " for my bones". the rheumatologist said that it is difficult to really check for bone cancer entirely from blood work, but he graciously looked at my report, and said that it looked good. you know, for the first time since my diagnosis, i am truly beginning to feel like i just might beat this. i have some hope- i'm keeping the faith, so to speak. tomorrow i have the "mystery ultrasound" and office visit with my endocrinologist. hopefully that will go o.k. i feel like i am on a roll now. maybe " tomorrow ain't as bad as it seems..."

Friday, September 24, 2010

" In the middle of the night, i go walking in my sleep. From the mountains of faith, to the river so deep...............We all end in the ocean, we all start in the streams, we're all carried along, by the river of dreams, In the middle of the night." River of dreams, by Billy Joel

i live near the headwaters of theYadkin river. it looks like a creek most of the time, but after a heavy rain or flood, it looks like the river it becomes a few miles on down the road. when my children were young, we took them down to" our spot "in the river . it was there  they could swim and slide down a special ( very small) water fall. our spot had a place big enough to support our floats, and we spent many happy summer days enjoying the water.

my children also enjoyed catching crawdads( some folks call them crayfish). it was a catch and release program- my children did not want to hurt them. it was tricky to pick them up in just the right place, so that they would not get their fingers pinched in the process. they got pretty good at this- in fact, when my daughter was in elementary school, she showed some city boys how it was done! they were daring each other to see who was brave enough to do it, no takers, until she overheard their conversation. she promptly picked one up and said" it this what you want?" i think the boys all jumped back about 10 feet or so, and she returned it to the stream. i am glad that my children were raised in the country.they have a great respect for nature, and who knows when crawdad catching might come in handy?

i can see the river from my house. i feel a connection to the water, the way the sunlight plays on its surface in the late afternoon; the way the snow snuggles around it during the winter. i feel fortunate to have such a peaceful place to get better. i still get dead tired from work, but when i come home i can rest and reflect on my life. like the song, River of Dreams, i do a lot of thinking in the middle of the night.  i wish that i didn't- so does my husband ( sometimes i wake him up!)

i think that life is sort of like a river. at this point in my life, there have been many twists and turns. a lot of white water rapids, you might say. i have hung on to the lifeboat, and have not fallen out of the boat yet. i am hoping for calmer water soon. i could never have imaged what has happened to me this year! i took my dad for his check-up today with his surgeon. he is doing great- the final biopsy showed no cancer in the thyroid or any cells surrounding it. my dad must have told his doctor about me, because the surgeon asked me if i was the one with thyroid cancer. i said," yes, stage 3 papillary thyroid cancer". he said," then you are going to be o.k. now?" and i said, " well, that is the plan". i can always dream, in the middle of the night that it is.

Wednesday, September 22, 2010

" Bringing Sexy Out of the Thyloset"

Bringing Sexy Out of the Thyloset

1. I have papillary cancer, stage 3, and was diagnosed in April, 2010. i reluctantly call myself a survivor,as i will feel better when it has been a year or so, from that date. i am still concerned about my lymph nodes- the surgeon removed some, as the cancer had spread from my thyroid to some of them, as well as into two of my parathyroids, which were also removed.

2. Thyroid cancer awareness is now like a mission to me. i am in health care, and i have met some other thyroid cancer survivors, or those that have had surgery. i relish the chance to talk to these people. i met an 84 year old man the other day- he is just starting his "thyroid journey" and we talked a little bit about the possible hypo- side effects and he told me about the problems he is having. i appreciate the opportunity to help others who may be going through this ordeal.

3. I know that when people tell you "thyroid cancer is the good cancer" they are just trying to be helpful or positive,but the first time someone told me that ( and i had not even read about how we all hate being told this!) i was thinking: well,  o.k. if you think it is so good, you can have mine!! but to be honest, because i think that people really do not understand, i try to explain that while the survival rate is better than  say, pancreatic cancer, this is a serious disease and the treatment is anything but a walk in the park. i try to educate them -in a nice way, of course.

4.I would also like to make people aware of the RAI treatment. most people think that this is not nearly as invasive as traditional "chemo". no one that i have talked to( except for thyroid cancer patients of course) has any idea of side effects- short or long term. and they think that being in isolation  would be a welcome break- a chance to get rested up, so to speak.

5. Thyroid cancer seems to be growing in numbers. everyone should be checked for this- if they have family members who have had thyroid issues, or if they have symptoms. they should do a "thyroid neck check" and talk to their family doctor about this. i would like to see this cancer get the growing attention that Colo-rectal cancer has been getting over the last few years. i think that the "good cancer" image is contributing to a lapse in awareness or concern about having thyroid cancer.

6. My most important advice to a newly diagnosed ( or at any stage, for that matter!) thyroid cancer patient is to be informed! buy some really good books on thyroid cancer. one that i recommend is " The Thyroid Cancer Book" by Sara Rosenthal. also, go to great websites like Dearthyroid, or Mary Shomon's website"" you MUST take control of your health! as well meaning and good as our physicians/surgeons may be, you are ultimately in charge, and must see to it that you get the care that you need and deserve.

7. i have many funny thyroid cancer related stories. i like to find the humor in things, and would definitely rather laugh than cry. probably my favorite story involves a med tech at the hospital where i was getting my RAI treatment. my endocrinologist decided that it would be a good idea(!) to get blood work done only two days after receiving my large dose of I-131( 154.9 milicuries).the following is a part of  my blog entry after this visit:

" Mmm,ah............................. ARE YOU PREGNANT?!!"

i had to ask the med tech first thing, before she got too close to me. instinctively, her hand when to her stomach to smooth her top down. i could almost hear her thinking:" I wonder if these pink scrubs make me look fat??" then i saw sparks of fire coming out of her eyes. good job, bea, she has a 20 gage needle headed straight for your arm and you made her really mad! she said, " of course not!!". but she could have been, i mean she was not too old or anything. when i explained why i asked, she calmed down, and actually thanked me for asking.

Dear Thyroid is a thyroid support community and literary brand. Our goal is to connect patients with each other, to create awareness for thyroid diseases and cancers, and to give all thyroid patients a voice. We come together as a united front to invoke change on behalf of thyroid patients worldwide. Thyroid patients are invited to submit letters to their thyroids, thyroid rants and raves, and other literary creations. Help us to create awareness for thyroid diseases and cancers by wearing your disease on your sleeve and by requesting one of our free awareness bands. Visit to learn more!

" Dearthyroid. blog tour"

i have been working on a blog that will appear in the dear blog tour tomorrow. ( Thursday, September 23rd).  i hope that all of you can check out this website. the host also writes a blog, and there are links to several very good blogs about thyroid cancer. i was happy to have been asked to be a part of the "blog tour", though i will admit that i had never heard of one until now! it is wonderful to know that we can get together and share our experiences and information on thyroid cancer. it makes the load a little lighter, i think.

i will be posting a new blog ( a regular blog, i guess you would say) on Friday, September 24th.i hope everyone is doing well and see you tomorrow!!

Wednesday, September 15, 2010

" Hi, Ho!, Hi Ho! It's off to work we go! Her calcium is low!" apologies to Snow White, the Seven Dwarves, Walt Disney, etc.

i had my blood work done last week, and i got my results today. everything was fine except for my calcium level- it is pretty low. the following is a conversation that i imagined my remaining  two brave and loyal parathyroids having:
P #1: " Hey, man, i'm beat!"
P#2: " Yeah, man, me,too!"
P#1: " Who would have thought that we would be working so hard!?"
P#2:  " You know, when we signed up for this gig, there were four of us! those other two low-lifes just
            up and left!"
P#1 : " Yeah, i think that they went on vacation to Paraguay, or somewhere, and i don't think that they
          are coming back. "
P#2 : " We should have never signed up to work on a thyroid gland named the "Titanic"!
P#1:  "to make things even worse, she has decided to cut back on her dairy products! she thinks she eats
          too much of them and they  might make her fat. oh, brother!"
P#2  " Maybe we can get her to take a calcium supplement"
P#1  " Less work for us!"
P#2  " Yeah!"

i am probably the  only person who imagines their body parts talking to each other. otherwise, i am pretty normal.( whatever normal is, of course)

seriously, if you lost one or more of your parathyroids during your surgery, remind your doctor to keep checking your calcium level. Hypoparathyroidism ( (HPTH) is a serious condition that makes being hypothyroid look pretty good. HPTH can cause parethesias( a burning sensation that feels like bugs crawling on the lips- ugh!), twitching and tingling in the legs, hands,eyeballs, and occasionally seizures.i had intravenous calcium in the hospital, and took a drug called Rocaltrol( Calcitriol), while i was in the hospital and for two weeks after i got home.. it is a highly active form of vitamin D, which helps with calcium absorption. i also took a huge dose of calcium- 12,000( yes, that is 12,000!) mg in the form of tums, which is calcium carbonate. i have since found out that taking calcium citrate  is a much better choice. it is better absorbed by the body. of course, keep in mind that if you have a high level of calcium, that is not good either.

parathyroid hormones aid in the conversion of vitamin D to its active form, and also help the kidneys keep calcium from filtering out of the blood. if you have too much calcium in the bloodstream, you could have kidney stones and/or high levels of calcium in the urine.

no one has been following me for this problem. i do not think that i have full blown HPTH, but i need to monitor this, to say the least. i decided to ask one of my doctors to check my calcium level when i was going in for my thyroid  blood work. i am going to talk to my endocrinologist when i go to my appointment on September 30th. i need this level checked pretty often, until it gets to a normal value and stays there. here again is another example of taking charge of your own health care. unfortunately, you can not depend on your physician to do things for you. as good and well meaning as they are, you need to get as much information as you can and be responsible for your own good health.

you might say, Hi Ho, Hi Ho, it's off to work, we go!

Tuesday, September 14, 2010

" If you see a faded sign by the side of the road that says: 15 miles to the love shack,love shack, yeah,yeah. ...I got me a car, it's as big as a whale, and we're heading on down to the love shack. I got me a Chrysler, and it seats about 20..." Love Shack by the B-52's

i love this song. it makes me happy every time that i hear it, and it makes me want to dance. i have tried to stay on the "straight and narrow" road that has been my life, but this summer, my road veered left. i was so caught off guard. i am still trying to correct my steering, but i have not yet managed it. i am not ready to swim in a pool with all of my clothes on, as Laura linney's character did in the" Big C" , but i do need to break out and do more stuff. not work stuff, not chore stuff, but fun stuff.

i do not see how anyone can face a serious illness like this and not make changes. unless of course you are in denial. if you believe that you can just go on like before , and not have some self reflection, or attitude adjustments,then you are fooling yourself, i think. i have an ultrasound coming up this month. is my doctor looking for my pesky parathyroids? or worse, is she checking out my latent lymph nodes? i will not know the answer to this until later on. i will just have to deal with it the best way that i can, in the most positive way that i can.

seems that some decisions- some curves in the road, if you will, demand that we acknowledge them and make adjustments.i am trying not to get discouraged about not having enough energy to do the things that i enjoy- zumba, walking my dogs, etc. i hope that in time, my energy will pick up and i will feel better. i have been in denial a little bit about this- trying to wear the "super woman costume". but i just need to be more patient with myself. i will eventually get back to the new normal, whatever that is. 

we should all value our time here on earth. ride down your road in a great big car- living life to the fullest, laughing all that you can, and loving others well. oh, and "don't forget to bring your jukebox money."!

Friday, September 10, 2010

i know, i know,... i'll keep my day job!

when i was first diagnosed with cancer, there was not much to laugh about. i would rather laugh than cry, but i  will admit that i was doing much more crying than laughing.then,   i came across this Megan Stendebach, a thyroid cancer survivor, has "redone" some popular songs and given them thyroid lyrics. her website was mentioned in "The  Thyroid Cancer Book, "by Sara Rosenthal. i read a few of those songs, and had the first out and out belly laugh i had had  since i had been diagnosed with thyroid cancer. i especially like " My God, I'm, a Hypo Boy!" sung to the tune of one of John Denver's songs. she is so funny, and right on with her lyrics. you should really check it out. so, today, in honor of the month of September being " Thyroid Cancer awareness month" i have made a feeble attempt of my own. this is also to honor Megan, and the great job she has done in making many, many thyroid cancer patients laugh a little.

T: is for my thyroid, though you've left me.

H: is for my hair that's coming out.

Y: is for the yucky way i'm feeling.

R: is for the rest i'm always needing.

O: "ouch!" is what i say when blood works done.

I: is for my friend RAI( aka, I-131)

D: is for that darn scar on my neck.

put them all together, they spell "thyroid", i don't have one left, so what the heck!

i know, i should really keep my day job. happy thyroid cancer awareness month!

Thursday, September 9, 2010

the new normal

i mentioned that we thyroid cancer patients live from scan to scan. someone wrote a comment on my blog that this is the "new normal". i agree. my life has changed in so many ways, i can not believe it sometimes. if you did not know me very well, you probably could not tell that anything had changed with me. i get up everyday, i go to work. i come home and feed my dogs and cats. i do my chores,etc. i guess what has changed the most  is my attitude, and my perception of the world around me. before i got sick,  when i heard that someone was dealing with a serious illness, i felt some amount of sympathy for them and their family, but i really could not relate to how they were feeling. i tended also to compartmentalize my feelings- sadness,anger or whatever, and throw them in the back of my brain. now i think that i can honestly communicate with someone who is sick, or has a family member who is dealing with a serious illness. i hate to say it, but truthfully, this has made me better at my job. i have more compassion, and i truly listen when someone chooses to confide in me.

today, one of my patients told me about her daughter-in-law having thyroid cancer. she has had the surgery, along with the RAI. she has two little children, and this wonderful woman- who has a serious health condition herself- was running herself ragged taking care of the children, as well as her daughter-in-law. one of the grandchildren is a seven month old baby. of course, you can not explain RAI to a baby, much less the "six foot" rule. her daughter-in-law was just "reunited" with her baby this week. her mother-in-law told me that she did not know which one of them was the happiest.they were laughing, crying, and would not let go of each other.  then, my patient told me that she was going to go back to work next week, and that things would be returning to "normal". i said, really, normal? and she said, yes- normal, whatever normal means now.

this family has changed forever. the new normal that they have created for themselves involves a lot of love, commitment, and hard work. some days will be good days, some bad, but i think that this has made them closer. i really admire the way that they have handled this difficult situation. i would say that i am hoping that they laugh a lot and have fun, but with a baby, i think this goes without saying.

to all thyroid cancer patients out there, whatever your new normal is, i hope that you are doing well. i hope you have benefited from this illness in ways you could never have imagined, and rejoiced in good days. i hope that you have laughed, loved, and rested well. welcome everyone to the new normal.

Tuesday, September 7, 2010

" I see trees of green, red roses,too, i see them bloom for me and you- And I think to myself, what a wonderful world. I see skies of blue, clouds of white, the bright blessed day, dark sacred night, and i think to myself, what a wonderful world. The colors of the rainbow, so pretty in the sky. are also on the faces of people going by. I see friends shaking hands saying " How do you do?" they're really saying, I love you. " Louis Armstrong- What a wonderful World.

I just love that song. it was hard not to include all of the lyrics- i just about did! i sing it to myself when i get a little down, and it cheers me up. this weekend was a wonderful time for me, and i hope for all of my family. i just love it when we all get together! my children and their spouses were all here, and we went to see my dad on Saturday.Saturday night we were having a meal and i looked around the table. everyone was there and i thought i was just about the luckiest person on earth! we had a good meal, and my son( as usual) was making everyone laugh. one of the jokes was at my expense. you see, one time a few years ago, we were heading for a vacation to the beach.if you are familiar with the terrain of coastal south carolina, you know that  there are great stretches of marsh land, with roots and "knees" of trees sticking out of large areas of the marsh land.  i do not know what made me think this, but i thought that what i was seeing was ostriches. i said oh, look, an ostrich farm! ( no, i was not wearing my glasses!). well, my kids have  never let me forget that one. as luck would have it, the next trip we took was a driving trip out west. we actually saw an ostrich farm- big sign and everything .my kids made me get out of the car and stand in front of it so they could take a picture! how i wish they would forget that one- but i am afraid it comes out from time to time at family get togethers.

i had a great belated birthday celebration this year. i really, super appreciate all of our family  time together, and the fact that i am actually having another birthday. Karen made a comment on my last blog- about the fact that she and her husband are actually doing the things that they talk about doing. you know, we do not often get second chances in life, and my husband and i agreed that this is something that we need to do. why is it so hard to have more fun, do more things? we sure get ourselves to work and work all of the hours that we are scheduled. i think that i ( and many others, i am sure) need to be sure that we have all of the fun that we can. we need to take this seriously! this is our life, and we need to do more, cherish more, and have more fun. this truly is a wonderful world, and i for one am going to try to enjoy it!

Thursday, September 2, 2010

" We are family! i got all my sisters with me....and we fly just like birds of a feather...high hopes we have for the future and our goal's in sight. no, we don't get depressed, here's what we call our golden rule: have faith in you and the things that you do, and you won't go wrong." ( Sister Sledge)

a serious illness causes you to think about your life in many ways. i was thinking about my family- a lot of my family has passed away- my mom, all my grandmothers, granddads, uncles, aunts, some cousins for good measure. anyway, i was getting a little depressed thinking about it and then i realized something. through shared experiences with thyroid cancer- both good and bad- i feel that i have developed a sort of "kinship" with everyone who has read my blog. whether you have commented on my blog, or emailed me with your particular experiences, or just offered me support, i feel that we are all part of a special group.( o.k. maybe we did not exactly plan on being in the cancer group.) but we have a common denominator of understanding, and i think, friendship.

no matter what stage we are in, in our journey, we can identify with what each of us is dealing with. no one else- not family, friends, or co-workers, really" gets it "like another thyroid cancer patient.when i get depressed, i think about all of the new friends i have met through my blog. i am sorry( REALLY SORRY) that we all have cancer, but i would not have met you guys otherwise. that is something good that came from my cancer, and i feel that it is a blessing i would not otherwise have had.

an employee where i work asked me how i was doing. i said, oh, fine. and he said, no, how are you really doing? his wife has cancer, and he has talked with me a time or two. i stopped for a moment, and considered the question. sometimes i feel like i have   multiple personality dysfunction or something.  my Pollyanna self- the dominant self, says everything is fine and dandy. then my private self, "Debbie downer," if you will, gets sad. i have said that we thyroid cancer patients live from scan to scan and i almost want to just jump ahead  in time to the next scan. of course, there is a whole lot of living to do before my next scan. i have to remind myself to enjoy my life and not wish my time away. i do need to "believe in myself and the things that i do".

my children are all coming home this labor day weekend.  we will celebrate a belated birthday for me. i really like the national cancer society's slogan " celebrate more birthdays". it really does mean something more to me now. someone told me, oh you had a birthday, i won't ask how old you are! i said i was very,very happy to be a year older. here's to all of my new friends: HAPPY BIRTHDAY TO US ALL!!