Friday, July 30, 2010

"You win some, might get lucky now and i'm rambling through this meadow, happy as a man can be, think i'll just lay me down, under this old tree...on and on we go, through this old world a shufflin', if you've got a truffle girl, you can go trufflin'"( Get Lucky, by Mark Knopfler

i had an almost normal day today! i took my dogs for a walk, and i walked my 1 & 1/2 miles. of course, i was pretty tired when i got back home, but not as much as i thought i would be. i also watered all of my plants- all of the beautiful flowers my husband planted for me, both on the porch and outside in the front yard. there were lots and lots of butterflies. my favorite is this little greenish-white butterfly. it is always with a mate and they seem to play about as much as get nectar from my flowers.i will have to look up the name. it is small, and cute rather than beautiful like a monarch. i have always appreciated the beautiful scenery around me, but now things take on a different meaning. i guess cancer does that to a person. i will never be the same, but it is really good in a lot of ways. i do not take things so much for granted. people, either.

i have so enjoyed writing this blog. it has been my lifeline, literally. i am not sure how long i will continue writing. i mean, are people still interested? i want to help others deal with this situation, and it has of course helped me tremendously. my daughter said she wanted me to keep writing. she said, i'll read your blog, mom!! and she does- every day, as does my husband. i am just in a waiting period( again). i do not have any new information to share. i have decided to give my doctor until next Wednesday to get back to me. then, i will call until i get an answer. either she will tell me the results on the phone, or i will go down there. i have an appointment for a ultrasound the end of September ( i mean, what is there to see in my neck now? this is confusing to me.) but i can not  wait two months for my "results show". i want to get the results, good or bad, before i go back to work. i got the news i had cancer when i was at work. i literally fell apart. i had to go home. i do not want this to happen again. i can deal, i just need a little time to work things out and decide on a course of action. i just need to get my attitude on.

i think that i have identified the greenish-white butterfly in my garden. it is a Florida White, i think. it has a range from Florida to New York, and prefers shaded thicket interiors to glades or open sunny spaces. ( me,too). look for it- you might have it in your yard,too.

Thursday, July 29, 2010

" For i must be traveling on, now 'cause there's too many place i've got to see..........won't you fly high, free bird,yeah?" Lynyrd Skynyrd

i got out for a walk today.( the birds seemed to be o.k. with this) i have missed walking, but i have to work back up to what i was doing before the surgery. i took about a mile walk ( more like a stroll, i guess). it was beautiful. i took my dogs along, and i walked early so my husband could come before he had to go to work. i am so fortunate to live out in the country - i can take a long walk whenever i am not working. i really am enjoying this time off from work now. before i was so nauseated that i could not leave the bed for long, but now i can get up and do a few things. i did not take enough time off after my surgery, so i feel like i am finally beginning to recover from that as well.

i am curious as to how long other  people had to wait for " the results" visit. i know that i need to give my doctor time to get all the reports in from the hospital. i guess that really, the full body scan i have to have in 6 months will be more of an indicator of whether the cancer is really gone. i really do not know what to expect at this point. i sort of go back and forth between wanting results now, and not wanting to know at all . this is really not like me at all. i have the "need to know things"  that is pretty strong.    i feel sort of at the mercy of my doctor at this point-not a good feeling. i wonder how it would go if it were happening to her? don't get me wrong,though, i really like my endo. as far as i am concerned, she saved my life. i am just frustrated i guess.

i have decided to call my doctor again next week- when i think that they probably have all of the results. in the mean time, i will just enjoy my freedom, even if i can not go shopping,etc. i have plenty to do here at home, and a lot of walking to do. i feel like a free bird, but with one leg chained to a tree!! better than being a crazy old lady in the upstairs bedroom,though.

Wednesday, July 28, 2010

coming home , again

well, i had my whole body scan this morning. it was a pleasant ( sort of) experience. the radiology technician gave me a warm blanket- aren't they just the best things? i have been given one for other procedures i have had, and they make you feel warm of course, but also comforted. it was not an inclosed MRI type machine, which i had been dreading. it was an open machine, and it actually had a camera inside. they lowered it pretty close to my face, but the technician put a sort of cone- about 4 inches tall on my chest, so that she would not get to close to my face. i think that was a "feel good" device for the patient. it worked, by the way. they scanned me head to toe, but also came back for a little longer look at my neck. it took about 30-40 minutes.

i did not see the wizard. in fact, i only saw him once during this whole week and a half treatment. i had the opinion, i am not sure where i got the idea from, that he would be going over my chest x-ray and body scan with me. instead, the technician told me that all information would be sent to my endo. i called my endo to let them know i had finished my treatment, and asked if i had to make an appointment, or if they would call me. i had to leave it on the voice mail. i did not hear from them today. this leaves me a little frustrated as to what,when,etc, i will get my results. here goes the waiting again. that has been the hardest part to me. i know i am not their only patient by any means, but i wish things could be done in a more timely manner. i.e., so i can keep from freaking out so much!

the good news is that i am free to move back downstairs. yeah!!!! i spent the afternoon cleaning and disinfecting my son's bedroom and bathroom. i bought a new comforter set- i am washing the one he had on there, and will pack it away until i feel that it is totally "cool". i ordered his comforter set on line. i am constantly amazed at all of the products that you can order on line. i mean, i think that you could order everything you needed and would never have to leave your house. i got to hug my husband today, as well as my dog and cat. i was feeling the love.

a couple of people have written in their comments that they are beginning this treatment soon. i hope that everything goes well for you. rest as much as you can, and if you get nauseated, remember my mom's advice about the coca-cola in the little glass bottles. it really works. i could not find any organic sour lemon drops,but i made a couple of pitchers of sour lemonade that worked pretty well for me. i kind of swished it around in my mouth for a few seconds before swallowing it. i still get pretty tired, but overall i think i have done pretty well. hopefully, my "results show" will be a good one.

Tuesday, July 27, 2010

" the lunatic is on the to keep the loonies on the path...i'll see you on the dark side of the moon... the lunatic is in my head..".( Pink Floyd )

i am actually looking forward to going to the hospital tomorrow. ( getting out of here). i guess someone is getting a little STIR CRAZY!!!!! i am feeling better- my voice is not very good,though. but at least the nausea is gone. i am not used to "resting". i have been reading, and watching a little HGTV. i am afraid to do too much downstairs- as far as cleaning, cooking, etc,- even with gloves on. wearing gloves makes me feel a little crazy,too. i guess it brings Michael Jackson to mind- although my gloves are made by playtex. and, i have a matching pair.

i would like to venture outside, but my pets are preventing me from doing that. and there is the business about the birds- maybe i am past that point now. my pets are very confused. they know i am in the house, but i am sure they can not figure out why i am not spending time with them. my cat domino- yes she is black, with little white feet and some white markings and whiskers on her face- is the most determined of all. she stations herself at the front door, and if i even touch the door nob( gloved hand of course) she runs to the door. she would be on me in two seconds. i am really looking forward to being able to spend time with her again. i miss my German  Sheppard, shadow,too. he came in last night before bed- he sleeps in the house- and he saw me on the stairs. he stood there looking at me, turning his head from side to side,those big radar ears of his sticking straight up. i said,noooooooooooo, stay there!! he did what i said, but you could tell he was confused about the whole thing. sure would be nice to be Dr. Doolittle about now.

i have been on a terrible schedule- staying up late reading, getting up late, taking a nap. i  will have to try to go to bed early tonight. my appointment is at 9am, and the hospital is an hour away, so i have to leave about ten minutes before eight, so i will have time to park, etc. i also have to go by the lab and check on the thyrogloulin test that i had done on Friday. my doctor's office called and said that they did not have the test results yet. my endo has been in the process of moving, and i guess the fax gremlins got it or something. i have had terrible luck with test results, reports, etc. i have tried to take more responsibility in these things, as should everyone, but it is frustrating to say the least.

i wish i could go shopping after the hospital business is finished. but i can just see the sales clerk at the dress barn saying" how odd, the clothes are glowing!" i will be good and come straight home- to my room upstairs.

Monday, July 26, 2010

" I was sick and tired of everything, all i do is sleep and eat and sing...." Abba

that is mostly correct. i sure can not sing ( very well, that is). my voice goes in and out. it has been sort of weird,throughout this whole process. when i answer the phone, people think that i have been asleep( i have been sleeping a lot,though). my voice is back to "froggy". it was like that before my endo raised my thyroid medication dose, and now again. at least the "sock feeling" in my neck is almost gone. time for those storm troopers/jedi knights to fly away home.

i had nausea for four days. the second day after the I-131 was definitely the worst, as far as side effects go. my salivary glands swelled up and were tender, but that went away on the third day. all in all, i guess i have been lucky. i do not like the isolation at all!! i want a hug from my husband, of course i sure do not want him glowing,too. i was reading in my thyroid cancer book, and the author said something about "x-rays coming off your skin.." wonder if anyone needs a dental x-ray or the sort? who knows, i could be useful! seriously, it is hard sometimes to remember that i am "hot", especially when i am starting to feel better. i sure hope that everyone else goes by the rules. who knows what we are exposed to "out there". i always wipe down the shopping cart handle,though. i had never thought about this before. of course, there are other things besides radiation to worry about when we go out shopping, i guess.

i look around my house and see lots of things that i could be doing. i can wear gloves, of course, but i think that i probably need to wait a while longer before i do any major chores. i have been reading a lot- i bought several paperbacks, and some magazines. i have been watching home and garden TV. i do not care for most of the other shows on t.v. i have thought up lots of large and small remodeling projects for my husband to do. he will be glad when this is over,too.

it has been too hot to go outside much. the wizard told me not to go outside the first two days. he did not explain this. of course, i imagined that maybe the birds would fall (dead) out of the trees??! in a few more days,though, i can get back to walking- either in the early morning or evening when it cools down a bit ( and i cool down a bit!). the next two hospital trips for me will be on Wednesday, to get my whole body scan, and whatever day( it has not been scheduled) for my results day.

Friday, July 23, 2010

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

i had to ask the med tech first thing, before she got too close to me. instinctively, her hand went 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 the 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.

i had blood work done on Monday- and my arm looks like i have a picture of the planet Saturn tattooed there. really. there is a red bump, surrounded by black and blue rings. apparently, this is the only good vein i have in my body, and she had to stick me in the same place. also my vein "rolled around" she said so she was moving the needle around in there trying to find it. i wanted to say" stay,boy,stay, and let this woman pierce you with her weapon of torture." finally,though, she hit the right place and got the sample. i sure hope i do not need more blood work for a while. of course, i have to look. my husband says, why don't you look away? i want to, but it is like a dead animal on the highway, or something. i have to look, and then of course i am sorry that i did.

i am still dealing with a little nausea, on and off. sipping on a coke and taking a nap helps. my salivary glands are not swollen or tender to the touch anymore. i feel like i have swallowed a sock, and it got stuck in my throat,though. i guess those jedi knights and storm troopers are still at it. i am sure that this will improve soon.

TOMORROW IS CHEESE DAY!!!!! YIPPEE!!!!! i am having a cheese pizza for supper, and i think a chocolate bar for breakfast. i have missed cheese/dairy more than chocolate,though. i was kind of surprised. chocolate is usually my feel good food.

i will just be chillin' this week-end, i guess. Wednesday of next week, i have to go back to the hospital for my full body scan. then hopefully, i will go back for the "results" visit with the radiologist and everything will be fine and over for a while. fingers crossed.

Thursday, July 22, 2010

" It's not easy being green..." ( Kermit the frog) or radioactive either, for that matter.

there was a fierce battle going on in my body was the Jedi knights ( I-131) yielding their swords against the sinister storm troopers( cancer cells). i know this because i did get some nausea( it did not last long, and the coca cola did the trick) also, i felt like i had a fever- my head was hot, but also both of my arms- from my shoulders to the tips of my fingers. i had not read about this anywhere. i wonder if anyone else has noticed this, or something similar?? my neck hurt where my thyroid used to be- go Jedi knights! i figure the I-131 and some remaining cancer cells were/are  duking it out. it is a strange feeling,though.

today, the nausea is gone. but, i still have that "full" sort of feeling in my neck. also, i guess   my salivary glands ( the area between my ears and jaws) are sort of swollen and very tender to the touch. i am drinking sour lemonade like crazy, but i will see how it goes. if it gets much worse, i might check in with the wizard. i am not sure what can be done about it, but i might call him just in case. i am not complaining about this- i am just documenting it for someone else who may be curious. i really did not know what to expect- that was difficult for me. i like to be informed. everyone is different,though. sara rosenthal, who authored " The Thyroid cancer book", and is a thyroid cancer survivor herself, said that she did not have any side effects. go sara.  i think that probably everyone,though, has at least a small thing or two going on. i just keep thinking that Jedi knights are better than storm troopers any day, and that in the end good will

 before i got home from the hospital yesterday, my husband picked some of the flowers that he had planted for me, and put them, along with a very sweet card, in my bedroom. it is things like this that keep me going. he is trying his best to cook a little for me. he puts my food on the staircase landing and runs! i am not very hungry,though. i am saving up, i guess, for the HUGE cheese pizza that we plan to have on Saturday. also, i have stashed a few chocolate bars away for Saturday. if i am not careful, i will gain some of the weight i lost back!! 

wish me luck tomorrow. i have to inquire about the "pregnancy status" of the med tech who will be drawing my blood. ( i can hear her thinking, "what, do i look pregnant??!!") then i have to tell her to draw my blood as quickly as she can- i do not think that she can do it from six feel away, do you? all and all this could be pretty awkward. it should make for a good story,though.

Wednesday, July 21, 2010

"If ever a wonderful wizard there was, the wizard of oz is one because, because........of all the wonderful ( i sure hope) things he does ! ( the wizard of oz)

i got kind of a late start down the yellow brick road. my I-131 did not come in yesterday as planned, but it did come in today. so instead of 9am, i had to be there at 12:30. i was told not to eat anything two hours before or two hours after my dose. i am not sure why- an educated guess might be improved absorption. anyway, i got to the hospital, and my dose was brought out to me in a lead container. it was about the size of a can of tomatoes- the inside being about 3 inches or so thick all the way around. that only left a tiny space for a glass bottle containing my medicine. the capsule was about the size of a Tylenol gelcap. the technician said to just toss it in my mouth from the glass container, better not to handle it too much. she was gowned up and had on gloves. so i swigged it down, and left on my merry,hectic way home. traffic was terrible. i felt like i was a character in the video game my son used to play called "crazy taxi". luckily i made it home safely.

after about 30 minutes after my dose, i noticed my throat was getting sore. also, it felt like something was pressing down on my throat where my thyroid used to be. i have not had any nausea so far. i sucked on the sour candy that i had purchased, and also drank some rather tart lemonade that i had made. hopefully this is the extent of my side effects, but i am not " calling it " until later on. my neck appears to be a little swollen as well. but not enough to take any Advil, or to the point that it is alarming.

it has only been a few hours since my isolation, but i already feel like the crazy woman in those Victorian novels. you know, the one that gets locked upstairs. wow, this is weird. i also miss my dogs and cats. my husband forgot to put them up before i got home from the hospital. my dog- a really sweet german shepherd, sat by my car and would not leave. he did not understand why i was not getting out. my husband had to drag him away. the six foot rule is something that your pets sure do not understand.

i have enjoyed using the wizard of oz analogy. when my son was in high school, his drama department had a huge production of the wizard of oz, with flying stunts, expensive costumes,live music,etc. it was great. well, he played the wizard of oz. and his girlfriend ( now his wife) was Glinda, the good witch. so now you know why this has been a fun comparison for me.

Tuesday, July 20, 2010

" I'm off to see the Wizard!!"-- tomorrow

i went to the hospital today for my second injection of thyrogen. instead of Glinda, one of her"sisters" gave me the injection, if you know what i mean. i am not sure if she was from the east or west. she was nice enough, she did just not have the mad skills with a needle that Glinda had! i had to walk around for a while( i drove out to Michaels to look around) before i could sit for the hour ride back home. i have to drive myself tomorrow- to get my RAI. i just hope that i do not get sick, if i am going to, before i get home. i can just see me getting sick on the side of the road, and then haz-mat coming in for the clean up.

i have decided that the thyrogen did not make me feel so tired yesterday. i think it was the fact that i worked 6 out of the 7 days last week that did it. i have not had any problems with the thyrogen injection, well, except for a sore fanny. i am thankful i did not have to go off of my thyroid medication for six weeks before the treatment. this is definitely better. hopefully the scan will be detailed enough- that is the only drawback,besides the cost of course.

i am finishing the last minute things i need to do before my isolation. i am making a pound cake for my husband- he has hated my LID- me,too!! the cookbook has been great,though. i am even going to make the granola after i get off of  the diet. i have to get some more of my supplies ready- books, magazines,etc.. i have decided to use travel size containers( the 99 cent size) for my shampoo,conditioner,etc, and just throw what is left away. i hate to be wasteful, but i do not want to make anyone sick, either. i am glad that i found some disposable products that are "green". they are made of sugar cane and completely break down in three months.

i was concerned about my bloodwork that has to be done on friday. i will still be "hot" and i do not want to expose anyone. the folks in radiology told me to ask the med tech would would be drawing my blood if she was pregnant. now, won't that make a good first impression!?  they said for me to put " my good arm" out quickly, and don't linger. that should not be too hard (!!) i feel like wearing my husband's bee keepers suit into the hospital. i wonder if that would attract attention?

if you do not hear from me for a day or so, it means i am a little too nauseated to blog. but i am sure that i will be up and about soon. fingers crossed.

Monday, July 19, 2010

" Follow the, follow the, follow the,follow the,follow the yellow brick road!" ) The Wizard of Oz

well, i did not get to see the wizard today- that will be on Wednesday, when i get the RAI. what i did do today was to follow the yellow brick road all around the hospital. i went to radiology, and the scarecrow did my chest x-ray. then to another part of radiology, where, luckily i got Glinda, instead of the wicked witch of the west, to give me my thyrogen injection. i have not had an injection in my "buttocks" in years! when i was little, i used to get a lot of sore throats, and my doctor always ordered up a huge ( exceptionally huge when you are five years old) injection of penicillin. it got so when i was sick, i would try to hide behind the curtains in the den when i was told i had to go to the doctor. ( too bad they were sheers!) in case anyone wants to know, the thyrogen injection  did not hurt much at all- just a little sting, especially when the medicine went in. it helps to " relax" if you can. i have to get another one tomorrow, in the other side, and i am not dreading it at all. i have been exceptionally tired today,though. i am not sure if this had anything to do with the injection, or the fact that i worked all week-end. i guess i can better assess that tomorrow, after i have rested tonight.

anyway, after the injection, i went to the lab to have blood drawn. i am not sure which character fits the medical technician--- she was nice enough, but i have a pretty big black and blue spot on my arm. i have to go back on Friday, to get more blood work done. oh well, at least they will be able to see where they stuck me previously. hopefully she can work around it. she had better not look at the veins on my hands! 
i have been trying to get my room prepared for Wednesday.i have a small refrigerator upstairs for water and lemonade. i know that i will forget to do something( i guess this is where the disposable gloves will come in handy) i am planning on not coming downstairs unless my husband is gone to work. and even then, for the first three days especially, i am going to make it quick.

i got my family doctor to phone me in some medication for nausea. i sure hope i do not need it; it is better to have on hand since i heard some people get nauseous. of course i have my own remedy for nausea- passed down from my mom: coca cola in those little glass bottles!! it really seems to work.

back to oz tomorrow. it really seems that i am not in Kansas anymore.

Friday, July 16, 2010

" Oh, we're half way there, Oh, livin' on a prayer; Take my hand and we'll make it, i swear, Oh, livin' on a prayer" ( Jon Bon Jovi)

i guess i am just half way there. but better than being at the beginning.most of the time i do feel like i am living on a prayer. it has been such a roller coaster ride. i have been told different things- like the cancer in my lymph nodes. i have had four different answers on that one! but as i said, the radiologist had the pathology report and said that i did. that is why my I-131 dose is going to be larger than i had expected. it seems i do not know exactly what to expect any more. it seems like i am going where "no woman has gone before" to ( sort of)  quote james kirk. of course, this is just new territory for me.

when my husband and i were talking to the radiologist, and he was going over everything, i thought, is he talking to me? is there someone behind me,maybe, that he is referring to? i am glad that my husband was there as back up. i zoned out a time or two, it just seemed like too much. i remember when my doctor called me at work, before my surgery, and told me that i had cancer. do you remember that gary larsen cartoon, where he is talking to his dog ,ginger? it had one frame that showed him saying" bad dog, ginger, you got in the trash, don't  ever do that again, ginger" to paraphrase. but what the dog heard was" Blah,blah,blah, ginger, blah,blah,blah, ginger" it was sort of like that with me. what i heard was" Blah,blah,blah,CANCER,blah,blah,blah,CANCER."  i am a health care professional, for heavens sake. i am used to dealing with issues in health care. but of course, when it is you,it is a whole new ball game.

so i am going to work my week-end, hopefully i will not crash too much on saturday- it is a 10& 1/2 hour day. ( i'll have to bring my mat to take my nap on,hahaha ) Sunday is a better, well, easier day, usually. we are only open 8 hours. then i am off to see the wizard on monday. i do not think he has anything in his bag for me ( a new thyroid,perhaps?) but hopefully he can work some magic on those pesky, rogue cancer cells.

Thursday, July 15, 2010

My Journey to the top of the Mountain

i am getting anxious about my RAI treatment and tests coming up next week. i am even having a little trouble tuning it out when i am at work. before,  i could forget it about for a few hours at work, but it does not seem to be so easy this time. i know i should be relieved, i mean, my treatment is (hopefully) coming to an end. but of course i will not know that until i get all of the test results. i am not too good at " not knowing".

i am  comparing my experience with cancer to climbing a mountain. at first, it seems just too high and the journey too difficult. you just do not think that you can possibly make take one step at a time, careful not to choose the wrong path to the top. there are some beautiful things, amazing things, that happen along the way, but reaching the top is always on your mind. i am about three-quarters there, i figure. if i can just muster enough strength and courage to get to the top, i will reach my destination. i will be able to see everywhere that  i have been, and hopefully have a beautiful view of my future. of course there are no guarantees once you reach the summit. storm clouds can gather, and there can be difficult weather. but i am always one to look for rainbows, so i will try to hope for the best.

i am blessed with such wonderful family and friends. everyone at work has been incredibly nice to me as well. i have a lot to be thankful for. writing this blog has been the best therapy. the kind and helpful comments posted have been wonderful.i have tried to keep my sense of humor and not to whine too much. i hope i have helped some other people going through this experience. i know that i have benefited by the suggestions and shared experiences of some other thyroid patients. it is nice to be able to help each other.

Wednesday, July 14, 2010

Laughter really is the best medicine!

i had a great day today. it was my only day off this week, and i got to go to the dentist with my son.( he was the one in the chair, not me!) he drove home- he lives about 2 & 1/2 hours away, and then we drove another hour and a half to our dentist. it is a drive, but worth it. our dentist and his staff are all great. on the way there, he told me jokes and we talked about so many things. i laughed and laughed. it reminded me of when he was the " only one at home", his older sister having gone off to college. my son and i would have " just the two of us " days. we would go see a movie, go shopping,etc. it was great. i really miss those days, but it makes me cherish the ones that i have now even more.

the LID is going pretty well. i have a lot of food allergies, so i am used to being somewhat restricted on the foods that i can eat. if i could only have cheese, it would not be bad at all. i highly recommend that anyone having to be on this diet should buy the cookbook i mentioned earlier in one of my blogs. i do not think that i could have done this without it. i read over it several times so that i would be familiar with the restrictions. also, i highlighted recipes that looked good to me. i am going to have to cook several things on tuesday of next week- the day before my RAI. i have to be on the diet for 48 hours after my treatment, and i may not feel ( and i do not want to expose my husband) like being in the kitchen.

i will be living upstairs after my RAI. i will be staying in my son's bedroom which has its own bathroom.. i am going to buy one of those plastic mattress covers and buy some cheap sheets that i can dispose of after i am safe. i also may try to wear some clothes( for the first 48-72 hours) that i can throw away,too. i am going to really clean my son's bathroom after this is over. i plan on disinfecting everything! the radiologist said that i would have to wait 2 weeks and 2 days before i could wash my clothes and my husbands in the same washing machine. i also have to wait 2 weeks to throw my garbage away. i guess the disinfecting everything is just to make me feel better. you just have to wait for the I-131 to break  down, i guess you might say. i know that i will forget to do certain things; i have been trying to think this whole process through. i have to admit it will be better at home than being in the hospital.

i would like to thank my son again for a day filled with laughter and really is the best medicine for me right now.thanks sweetie!!

Tuesday, July 13, 2010

"At first i was afraid, i was petrified; I've got all my life to live, I've got all my love to give, I will survive, i will survive" (Gloria Gaynor)

i just love music! i have been practicing my "singing voice" in the car on my way to work, and at home when i am there by myself. i have never been a professional singer,ha ha,but i enjoy singing. my voice started changing before my surgery. that was a hint something was wrong. it actually improved quite a bit immediately after surgery, but then i sounded like 'froggy" until my endo upped my thyroid dose. now i get a little hoarse in the evenings. either i am singing too much, or it is coming from  the swelling i still have in that area. listening to music is an antidepressant for me. i can usually cheer myself up after a good song or two. after my poor unsuspecting radiologist told me about my lymph nodes being cancer, i stopped singing and listening to music. but it only lasted for about a day. i am embracing my Pollyanna self again. i know that whatever happens, i will do my best to get better.

on my next CD of upbeat music ( my daughter is making this for me) i asked her to include the song by Gloria Gaynor- " I will survive". i know she is talking about love gone bad, but i think it can relate to other things as well. i also asked her to include, " here comes the sun" by George Harrison. as for the rest of the CD, it will be a surprise. i never know what to expect. i have almost worn out the first one she made for me, and my husband sure is sick of hearing it every time we get in the car to go somewhere! i think he actually grits his teeth when "all the single ladies" comes on! but isn't that a joyful song though? i mean, so many people have danced to it. and there was that u-tube video where the little boy was in the back seat trying to " dance" along with his sisters. it was so cute!

good music, good food, good family times, nature, God... so much to be thankful for.

Monday, July 12, 2010

"Trust yourself, you know more than you think." Dr. Spock

before the birth of my first child, i purchased the gold standard in childcare- THE BOOK by Dr. Spock. out of all of that information, the advice that stayed with me through out the years  was to trust yourself, you know more than you think. a mothers intuition, i guess. i also think that people know more about their health  conditions than we sometimes will admit.

when i went to see my surgeon for the last visit, i felt that he was not being exactly straight with me. he seemed to not make very much eye contact, and a few things he said did not ring true with me. i did not say anything, i thought i would appear paranoid, but it continued to bother me. when i went to see my endo, she did not have the pathology report as yet. she called to try to get it while i was there, but his office was already closed. so today, i went to see the radiologist who will be treating me, and i got a big surprise. he had the full pathology report . i did have cancer in my lymph nodes after all. it was in the ones around my thyroid. because of that, i have to have a larger dose of the I-131 than i thought. instead of 100 milicuries, i will have to get 150. also, he said that i should have had a chest x-ray, because thyroid cancer moves from the thyroid to lymph nodes,then to the lungs and bones.

so, on the 19th of july, i get a chest x-ray, full CBC ( blood profile), and an injection of thyrogen. then on tuesday, i get another injection of thyrogen. wednesday  is when i get the I-131. thursday, i rest, i guess,haha, then friday i have more blood work done. the following week, i have my full body scan. it sounds silly, but i was afraid that it would be an enclosed  scan, like an MRI. i was really dreading that part. but it is an open "scanner". i hope it gets a good picture,though. i guess i will be ready for my "close up".

also, i found out that i will not be able to go back to work  until august, 8th. i thought it would be august,1st, but the radiologist said 2 weeks, 2 days from the I-131. it is not safe for other people. i would have to have a 6 foot  buffer zone on all sides of me. we have about, maybe, 6 inches, and i am NOT kidding where i work. also, there are young women of childbearing age there. a lot of my customers hug me, so i have to stay out until i am sure i am not glowing.

so i had a feeling something was not exactly right, but i guess that things are progressing as they would have anyway. i will just have to remember to trust myself- when i have a bad feeling about something, i need to act on it.

Saturday, July 10, 2010

"Flow it, show it, long as God can grow, it, my hair......"( Hair- the musical)

well folks i went to the hair salon today. i told my friend, and the wonderful guy who  has been doing my hair since forever, to please trim it a little shorter since i am going to be out for a while.( o.k. i'll admit that i also had a little color on my roots,too!!hahah) after he had washed my hair, he looked at me and said, "sweetie, you are losing quite a bit of your hair!!" i know that hypothyroid patients have to deal with hair loss( especially at the ends of our eyebrows. mine are a little short there) but i was not quite prepared to hear the news.  i thought that somehow he would not notice. fat chance of that, he knows me better than some of my family members! i have noticed recently that, well, larger handfuls have come out in the shower after i wash my hair. i know that really there is not anything you can do about this.

i have done a couple of things to slow things down a bit. i have, for the past several months, let my hair alone. in other words, i put up my flat iron and quit trying to be a person with straight hair. my hair is curly enough to be frustrating, so i just put a little gel on it and gently blow dry it. the other thing i have done, is to switch to organic shampoo, conditioner, and gel. i am not sure this really helps, but it makes me feel like i am doing something.some people swear by vitamins. they  will not hurt you, and it may help some,too. i think that once my thyroid medication has stabilized- hopefully i will find the dose that is right for my body, the hair loss will slow down. i am so thankful that the treatment used for thyroid cancer( the I-131) does not cause hair loss. it can cause nausea sometimes in some people. i get nausea pretty easily, so i plan on asking for some medication before hand. i can handle pain ( to a point) but nausea is another story. when i get nausea, i am a weenie.

the other day at work, a lady came in to the store to pick up her medicine. i heard her talking to the cashier about going through chemo for breast cancer. she was completely bald, wearing only a bandanna to cover her head. i felt sorry for her, but more than that , i admired her strength and grace. if i look around, i have found that there is always someone who is dealing with something more serious than what i have to deal with. it helps put things in perspective for me. thanks again for those two wonderful comments after my last blog. they help more than you could know!

Friday, July 9, 2010

"pass it on, pass it on" the fragles from a Muppet Family Christmas

cancer is not what defines me, but it has definitely changed my life forever. i think that most cancer patients can relate to this. i took a hospice course for caregivers about ten years ago. i thought that it would help me better relate to my cancer patients. frankly, i was just as nervous around them as anyone else. do i ask them how they are today? do i ask about treatments,etc,? i don't know what your experience has been, but when i drop the "c" word in conversation( i try not to) everyone gets quiet. the hospice course lasted 12 weeks, and they taught us to have empathy not sympathy. i do not want to be pitied( i mean, as i have said, there are plenty of people who have worse things to deal with than i do), but i'll take a little sympathy. well meaning good wishes and prayers are always welcome to me.

my surgeon told me that i would forget about ever having cancer soon. i do not agree. well, for one thing there is the but really i think that this illness has changed my life for the better in most things. i really do appreciate certain things even more than before. i cherish small kindnesses from strangers( especially health care workers!) and try to pass them on. one of my family's favorite holiday movies is the " Muppet family  Christmas." there is one part when the "fraggle rock" is passed on. i presume this  is  to teach children to share and appreciate the gift of kindness and consideration.i think cancer has been a reminder to me that this is very important to everyone.

Thursday, July 8, 2010

two days down, just twelve cheeseless days to go

i have made it two whole days on this diet! whew, it is hard. i made roasted red potatoes last night, and before i knew it, i picked up my sea salt and salted them but good. i had to rinse  them off, and start again. i put away all of my salt shakers, and large container of salt, so i would not mess things up again.i only have my non-iodized salt out now. the cookbook says that one day of mistakes can wipe out the entire two weeks on the diet. that is a scary enough thought to keep me  on track.

i made the "great granola" and i think it turned out pretty good. i am going to add some more unsalted nuts and more raisins next time, but overall i think that it is something i will make after i get off the diet. it will probably be a while,though, because i have had it like 5 times already. the worst thing( well, the worst thing is the lack of dairy- maybe i am addicted to cheese or something) is the preparation. having to work-  especially tonight- i worked 12pm to 9pm and then tomorrow i have to double-back and work 8am to 5pm. that makes cooking from scratch a little difficult. i am going to have to go on a cooking marathon this weekend. soups, chicken and muffins maybe.most of the recipes say that they freeze well, so i can hopefully plan ahead for next week.

i meet with my radiologist, or nuclear medicine physician, i am not sure of the correct name, this coming monday. he will go over more of my treatment with me. i have bought some disposable gloves- i could not get the heavy duty ones because i am allergic to latex. maybe they will be o.k. i have also purchased some disposable plates,eating utensils, and napkins. they are biodegradable , compostable and least that is what the package said. they are made from sugar cane fiber. i am not just glowing, i am glowing green!!!hahaha, could not resist.

Wednesday, July 7, 2010

"I like mine with lettuce and tomato,heinz 57 and french fried potatoes,big kosher pickle and a cold draft beer,well, good God Almighty which way do i steer...(Jimmy Buffet, of course)

No cheeseburger in paradise for me! i think that   all i could eat out of that list would be the lettuce and tomato!!yes, i started my low iodine diet today ( or LID) for people in the know. i had to go grocery shopping, no doubt about that." no salt" rice cakes, yummy!! i know that i will probably have to watch my weight later, but i lost 13 pounds when i had the surgery. i am thinking that i will lose another 13 on this diet. i love to cook, but breakfast seems difficult( i had a banana with some no-salt almond spread, this morning) of course, i can have non-iodized salt, but processed foods- even something as innocent as organic raisin bran, has regular salt. i will certainly have to plan ahead.

thank goodness for the cookbook i bought: The Low Iodine Diet Cookbook, by Norene Gilletz. she has such useful info in there, besides recipes for breakfast,lunch,supper and snacks. the first recipe i am going to try is the " great granola". it calls for honey and maple syrup. i am going to take some, along with those yummy rice cakes, to work. i think that i will have to eat several small meals. i bought a lot of fruit and vegetables. i am going to cook some organic chicken and have some veggies with that for supper. i have a sneaky feeling that this is how i should be eating all of the time.:) nothing like the fear of a bad I-131 scan to get you on board the healthy train.

my husband is trying to do this with me. i had to buy him some dairy products ( i can not have any at all, except for egg whites) and a couple of chocolate bars. 14 days without chocolate!! can you hear me screaming while i am writing this?? actually, there is a recipe for a chocolate cake- LID safe cocoa is permitted. i am not sure if mine is safe or not,though. i mean, it is organic and all, but i am going to have to do some research on this before i try it. i am used to eating a bowl of raisin bran with more fruit for breakfast. coconut milk is permitted. but soy milk is not. also, the only rice milk you can have( because the store bought brand has sea salt in it) is the " kind you make yourself". i do not think i can go there. i will just have to eat my granola dry.

anyway, this is going to be an interesting couple of weeks. i hope that i do not dream about food too much.

Tuesday, July 6, 2010

Finally, phase two of my treatment has been scheduled!

Finally, phase two of my treatment for thyroid cancer has been scheduled. yeah! i am to start things on july 19th- two months to the day of my surgery. my doctor signed off on the plan to have it done at a hospital near my home, so i can be at home and not in the hospital. i will start off on monday, july 19th, with one injection of thyrogen. then on tuesday, i will have another one. wednesday, i get the I-131. thursday i guess i get to rest.hahaha. then on friday, and this is news to me, as of today, i will get a thyroglobulin test. thyroglobulin is a protein that is made only by thyroid cells- both cancerous and non-cancerous. no other cells in our bodies make this. ideally, once you have had surgery to remove your entire thyroid( like me) and have the RAI to destroy any sneaky cells that got away, you should not have any of this protein in your body. if you do, then perhaps the thyroid cancer has returned.

of course it is not that simple. is anything medical??? about 25% of all thyroid cancer patients, especially women, have immune systems that somehow produce antibodies against our own thyroglobulin. so the thyroglobulin AND the thyroglobulin antibody levels have to be measured. if the thyroglobulin antibody level is elevated, then the thyroglobulin level can not be trusted. if the antibody level is very,very low then the thyroglobulin test can be an accurate test for persistent thyroid cancer.

sometime the following week, i will be scheduled for the whole body scan. i am not sure when that will be because the radiologist will schedule that either on the consultation visit on july 12th, or the week of july 19th. i have decided to take two full weeks off for the treatments, scans,tests,etc. besides, my co-workers do not want me to return until i stop glowing. to be honest, i need the time off. this has been a roller coaster ride for me, and i need some time to prepare and reflect on what has/will happen to me. perhaps i am too pollyanna about things, but i just have to be. yes, i have had some difficult moments, and i have cried and been depressed. but i have to get on with things, for my family as well as myself.i really do try to make the very best of things that i can. i had rather laugh than cry, actually.

i have been playing the "inspirational" cd that my daughter made for me when we found out that i had cancer. my theme song is "Touch of Grey" by the grateful dead. now more than ever, i need to believe that i will survive. i promise to do my best.

Monday, July 5, 2010

Zen and radioactive Iodine I-131

this weekend my daughter and i were sitting out on my front porch admiring nature,when we heard the most beautiful bird song. she asked me what kind of bird i thought was singing such a beautiful song. i pointed to a rather non-descript sparrow. i told her that " the most homely sparrows sometimes sing the most beautiful songs" she told me i sounded like the Dalai Lama! while i appreciated the comment, it is just something that i have noticed about nature in general. sometimes mother nature levels out the playing field, so to speak.

she also asked me about TSH, specifically why i needed a high reading before my treatment/scan. i told her that the way i understand it, TSH stimulates thyroid cells to make T-4 ( the main thyroid hormone) . i am not supposed to have any more thyroid cells, unless some of them have gone rogue, and escaped my surgeon's capable knife... my endo told me that no matter how brilliant the surgeon, some cancer cells would still be in my neck( lets hope that is the only place!). that is why i need the I-131. so, the high TSH " wakes up" the cancer(probably) thyroid cells, who shout out their location. then, the I-131 swoops down on them ( i like to think of the I-131 as a jedi knight, complete with a light saber) and destroys them.our   thyroid cells are very sensitive to iodine. the reason for the low iodine diet before our scans it so our thirsty little thyroid cancer cells will jump at the chance to take in the I-131.this is really remarkable science i think. i am not sure what scientist or group of scientists thought this treatment up, but it makes thyroid cancer easier to treat.

Saturday, July 3, 2010

Happy birthday to my son!!

happy birthday, sweetie! it was so good to see you today- we had a good picnic, didn't we? i enjoyed going to the park, and even though i did not play disc golf, i enjoyed watching those that did. and my neck was healed up enough that even the little children were not frightened( oh,well!!hahaha) you can still see the incision, and it is still pink, but it is not the first thing that you notice about me ( thank goodness)

thank you for all of your support, and for somehow always knowing when i needed to talk to you. i know that this has  been difficult for you, but i appreciate your help and all of  the love that you have shown me.i hope that you had a good rest of your birthday, and remember that tomorrow you will have fireworks!!

Friday, July 2, 2010

W-A-I-T-I-N-G again

i called my endocrinologist's office today. the nurse was supposed to call me,but i was afraid she would call my cell phone( i can not get service on my cell out here in the "boonies"). it seems that i am just going to have to wait some more to even find out if my treatment can be done at a semi-local hospital. the nurse said that they had to call the hospital and see if they can even do the treatment the way they want it done.(?) now, i appreciate being careful, but i already called the hospital and talked to the nuclear medicine staff. i also know two people who had their I-131 treatment and scans done there. i know that i am not the only patient my endo  is taking  care of, but i sure would like to move along on this! this is sort of hanging over my head, so to speak. i want to get it over with, and move on to the next thing. at work, they want to know when i will be taking some more medical leave of absence. i really do not know what to tell them. first my endo has to agree to this,then the hospital has to set up an appointment with one of the nuclear medicine doctors.then, the billing office has to do a prior authorization for my thyrogen injection,then we have to make appointments for my injections,I-131 treatment and finally, the whole body scan. are you as tired as i am yet??

to the good news, tomorrow is my son's birthday. all of my children are coming home, and we are having a birthday picnic to celebrate! i finally got going( i slept really late this morning- i wonder if they need to adjust my medicine, or am i just in a funk?) and i made a homemade birthday cake for him. i also made a double batch of tea and lemonade. we are having grilled chicken with some sides. i know i have said this before, but i really appreciate time with my family( my dad is coming,too) and good food!! yeah!

i hope everyone has a great fourth,too. when my son was little, he asked me why he was not born on the fourth. i said,well,sweetie, we  need two days to celebrate your birthday. on the last day, we have fireworks!

Thursday, July 1, 2010

How many hypothyroid people out there feel like they could star in the movie : "Night of the Living Dead"?!!

i really felt like a zombie a few days after my surgery, and before my endo doubled my thyroid medication dose. i can not imagine having to go off my thyroid medication six weeks before having a scan. all you people who have done this have my sympathy and admiration! even the cytomel ( T-3) that they let you take for 4 out of the 6 weeks would not be enough for me, i do not think. of course, this will give the most accurate scan. but the quality of life is pretty bad, to say the least.

Thyrogen is an artificial TSH. it will raise your tsh without you having to be off of your medication. of course, some insurance companies do not cover it. i am praying that mine will. in other words, you need a pretty high tsh for the scan- you can either do it by stopping your medication, and feeling like a zombie for 6 weeks, or you can do it by taking two injections of thyrogen. my endo recommends the thyrogen, so i am going with her recommendation. she said that it was being done more often, in first scans, as well as follow up scans, with a pretty good success rate. you still have to do the low iodine diet for about 2 weeks prior to the scan.

i hope that i can get the I-131 at the hospital near my home. there are no small children at my house, and i have an upstairs( where i will be living) my husband can stay downstairs. we'll just " holler" back and forth. i have already thought about how i can keep from exposing him- food upstairs, books,etc.  i have not read anything about this, and if anyone knows, please tell me, but how long are things that you touch "hot"? like if i sleep in my sons old bedroom, how long will his bed be hot? can i use the computer,etc.  i guess they will explain all of that to me. i sure do not want to make anyone in my family sick, either. or any of my patients at work sick. i talk to a lot of people, and i am a "hugger", so i will wait to come back to work when i am sure that i can not expose anyone else to the I-131.

thanks again to all who wrote comments, and are reading my blog.  i feel like i have made so many wonderful friends!