it seems to me that some people think that cancer has an awfully lot to do with math. i will give you some examples. for one thing, only 5% of all thyroid nodules are cancerous. if you, like me, are in that elite 5%, that percentage has a whole different meaning( or none at all, perhaps). trust me, when my doctor called to tell me that i had cancer, i was not thinking about the other 95% of the population. i guess that you could say that 95% is an A, and i had just flunked the biopsy exam.
another example is from the american cancer society. according to them, here are the 5 year survival rates for three types of thyroid cancer:
papillary, stage I: 100%. stage II: 100%, stage III : 93%
follicular: stage I: 100%, stage II: 100%, stage III: 71%
medullary: stage I: 100%; stage II: 98%, stage III: 81%
compare these to breast cancer survival rates: stage I: 96%, stage II: 84%, stage III: 52%
perhaps this is why thyroid cancer is known(among those who do not have thyroid cancer) as the "good cancer". this is another one of my pet peeves. who can call any cancer "good" for heavens sake! since i was diagnosed with stage III papillary cancer, i am in the 93% group. to be honest, that makes me a little nervous. let's face it, it is barely an A! joking aside, i am thankful that i had papillary stage III and not follicular or medullary. worse still, and i will not talk about this one, is anaplastic .but if you are curious, it only, (thankfully ) accounts for 1.6% of all thyroid cancers. it is a " get your affairs in order quickly" cancer. by that i mean that less than 1% of people diagnosed with anaplastic thyroid cancer are alive after just two years. sure does not sound too good to me.
i know that these percentages come from years of study and research. i have seen some variation,though, depending on the source. does that make a difference to me? not really. i did not even want to know what stage cancer i had until i was nearing my treatment. how could it have helped me? i think that it would only have discouraged me. when i was ready to find out, i was prepared to "fight" and do whatever i could to get better. being tested for cancer, then finding out that you have cancer is tough. so is surgery, treatment, the after effects from your surgery and treatment , emotional issues,etc. . i think that it is good to take one step at a time. do the best that you can do at each level and maintain as positive an attitude as you possibly can. knowledge is power- read all that you can, from reliable sources. but never lose hope. we are not machines. math percentages do not define us. in my career as a health professional, i have seen some stage I cancer patients die quickly, and some stage IV patients live a good long life.
hope, faith, love, the will to live- these things factor into those percentages. and i can say that i am 100% sure of that!!
I'm writing about my journey through thyroid cancer and beyond. I'm going to try to incorporate humor and positive self-reflection in an attempt to help myself heal and perhaps help others deal with this situation.Disclaimer: this site is for informational purposes only. this is not a substitute for seeing your health care provider. I am not responsible for any injury,loss or damage that allegedly arises from any information i publish in my blog.
Thursday, September 22, 2011
Thursday, September 15, 2011
" I was born, i was born to be with you, in this space and time. ...Only love, only love can leave such a mark. but only love can heal such a scar. Only love, only love can leave such a mark. but only love, only love unites our hearts. " Magnificent, by U2.
i was heading on down the blue ridge parkway this week to visit my dad. the scenery is just breathtaking. it never ceases to amaze me that i could live in such a beautiful place! first, there is julian price park and their fabulous lake. it just shimmers in the afternoon sun, and is surrounded by beautiful mountains. i usually almost run off the road looking at the lake as i drive past. then, a little on further down the road, i get to drive across the linn cove viaduct. this was an engineering feat due to the fact that the person who owned grandfather mountain would not allow the state to build a road which would impact his mountain. therefore, the state built a road that literally swings out over the side! you just have to see it to believe it. there you are, close to the summit of the mountain, and your car is on a road that is just hanging onto the side of the mountain. on a clear day, i have heard it said that you can see as far away as charlotte,n.c. personally, i have never seen that far, but the mountains do go on and on into the horizon. and talk about the sunsets- magnificent! i was actually listening( and croaking along to) that song as i was driving across the viaduct. so appropriate, i thought.
i am bringing my dad home from the hospital tomorrow. he has been there for a month, and while he has made progress, he still has a hard road ahead of him. he promised that he would try his best to get better and do the things like physical therapy, that he needs to do to improve. we are hoping that he will somehow get back to how he was before he got sick. but i guess that now he has a "new normal", too. the first week he was so critically ill, i just ran on adrenaline i think. but now, i get so exhausted after a day at the hospital, the four hour round trip commute, etc. lucky for me, my husband has been my best friend through all of this and has gone with me most times and done all of the driving. truthfully, i found it hard to focus at times. i am not sure how much of this is due to my thyroid-less condition, stress, or just the fact that i am getting older. i am not one to complain about that,though. i am so happy to have birthdays- it is the alternative that scares me.
i am glad that i have been able to appreciate the small pleasures life offers. i appreciate the fact that i could enjoy the beautiful scenery on the blue ridge parkway( next trip i plan to take some pictures- maybe include them in the blog if i can figure out how to do it!).no matter how stressed or busy that we are, we need to make time for the things that make us happy. i am so hoping to get back to zumba on saturday! my sister has said that she will visit dad that day so that i can go. i really miss the dancing- it is so good for me and it makes me happy. i even ordered a new belly scarf- red(!). i hardly ever wear red( clashes with my red hair), but sometimes i wear it to honor my mother. red was her all time favorite color. so.... if my red belly scarf comes, if we have a zumba class this saturday , if my sister can visit my dad that day, i will get to spend an hour doing something that i love and that is good for me. if none of that happens, then i think that i will go for another drive on the parkway. and take pictures.
i am bringing my dad home from the hospital tomorrow. he has been there for a month, and while he has made progress, he still has a hard road ahead of him. he promised that he would try his best to get better and do the things like physical therapy, that he needs to do to improve. we are hoping that he will somehow get back to how he was before he got sick. but i guess that now he has a "new normal", too. the first week he was so critically ill, i just ran on adrenaline i think. but now, i get so exhausted after a day at the hospital, the four hour round trip commute, etc. lucky for me, my husband has been my best friend through all of this and has gone with me most times and done all of the driving. truthfully, i found it hard to focus at times. i am not sure how much of this is due to my thyroid-less condition, stress, or just the fact that i am getting older. i am not one to complain about that,though. i am so happy to have birthdays- it is the alternative that scares me.
i am glad that i have been able to appreciate the small pleasures life offers. i appreciate the fact that i could enjoy the beautiful scenery on the blue ridge parkway( next trip i plan to take some pictures- maybe include them in the blog if i can figure out how to do it!).no matter how stressed or busy that we are, we need to make time for the things that make us happy. i am so hoping to get back to zumba on saturday! my sister has said that she will visit dad that day so that i can go. i really miss the dancing- it is so good for me and it makes me happy. i even ordered a new belly scarf- red(!). i hardly ever wear red( clashes with my red hair), but sometimes i wear it to honor my mother. red was her all time favorite color. so.... if my red belly scarf comes, if we have a zumba class this saturday , if my sister can visit my dad that day, i will get to spend an hour doing something that i love and that is good for me. if none of that happens, then i think that i will go for another drive on the parkway. and take pictures.
Friday, September 9, 2011
" and they knew all the places i needed to go, all of the people i needed to know. they knew who i needed, and who needed me. and who would come help me, and who would just let me be. i was in the hands of angels until this very day. inside the hands of angels, what more can i say?" In the Hands of Angels, by Leon Russell
this is a beautiful new song by leon russell and elton john. they did a collaboration cd recently, and a tour together( i unfortunately missed this). the cd is very good, i think. this song is especially meaningful to me lately. the decisions that i have had to make concerning my dad's care have been so hard. but sometimes, when i would listen carefully, the answer was right in front of me.
the world is constantly blasting information at us all. i try not to watch the news at night- it is depressing and it causes me not to sleep very well. when my dad was first in the hospital, i tried to read a book when he was napping. sometimes,though, i could not concentrate very well on my book and i would get out my smart phone and look at facebook or surf the web. now, i like facebook, don't get me wrong. i have been able to reconnect with a couple of friends from elementary and high school that i was afraid i would never see again. it has been really nice to chat with them and catch up with what they have been doing. i can see how people, especially young people, get " addicted" to being in touch all of the time. that is a whole blog or two by itself,though.
i wish that i had the patience to meditate. i have tried, several times, maybe not hard enough. but to sit still and clear your mind- without making plans for the next few days,hours,minutes even, is difficult for me.i seem to do better with a plan and a schedule of events. another "good" thing cancer has done for me is to chip away at the feeling that i have to be in control of everything. i mean, you have to be in charge of a lot of things- especially if you are a mom!- but some things you just have no control over. you have to learn how to just let go and let things happen sometimes. i am constantly having to remind myself to enjoy the small moments of my life. take a deep breath, and relax a little. who cares if the house is messy or you are behind in the laundry? well, o.k. i moan and groan a little about it, but i know that it will still be there tomorrow. that is what my mom always told me. " don't worry about the housework, honey, it will still be there tomorrow." boy, was she ever right about that one.
instead of the "new normal" i have a new,new normal now. i have to somehow find a way to go to work( that one is easy, i guess, i have bills to pay), visit my dad in the hospital,pay his bills, line up health care for him,see my family, oh, and i have sooooooooooooooo missed zumba! i have not been able to go back since my birthday, when i went with my daughter. i keep telling myself that i need to go for my good health, and if i am sick, who will take care of dad? i will make it back soon; next week, hopefully. i did order a new belly scarf last week- lime green- so i hope to have a chance to wear it soon.
i got a call from my doctors office today. my blood work was o.k. i am not sure of the numbers, but i will either get a copy in the mail, or i will request one when i go back for my ultrasound in a couple of weeks. i will admit that this has been the least of my worries,though. oh,jeez, that is another one of my problems. i am a worrier. i am worried about being a worrier- figures. guess i will have to work on that one,too. maybe some meditation will help.....
the world is constantly blasting information at us all. i try not to watch the news at night- it is depressing and it causes me not to sleep very well. when my dad was first in the hospital, i tried to read a book when he was napping. sometimes,though, i could not concentrate very well on my book and i would get out my smart phone and look at facebook or surf the web. now, i like facebook, don't get me wrong. i have been able to reconnect with a couple of friends from elementary and high school that i was afraid i would never see again. it has been really nice to chat with them and catch up with what they have been doing. i can see how people, especially young people, get " addicted" to being in touch all of the time. that is a whole blog or two by itself,though.
i wish that i had the patience to meditate. i have tried, several times, maybe not hard enough. but to sit still and clear your mind- without making plans for the next few days,hours,minutes even, is difficult for me.i seem to do better with a plan and a schedule of events. another "good" thing cancer has done for me is to chip away at the feeling that i have to be in control of everything. i mean, you have to be in charge of a lot of things- especially if you are a mom!- but some things you just have no control over. you have to learn how to just let go and let things happen sometimes. i am constantly having to remind myself to enjoy the small moments of my life. take a deep breath, and relax a little. who cares if the house is messy or you are behind in the laundry? well, o.k. i moan and groan a little about it, but i know that it will still be there tomorrow. that is what my mom always told me. " don't worry about the housework, honey, it will still be there tomorrow." boy, was she ever right about that one.
instead of the "new normal" i have a new,new normal now. i have to somehow find a way to go to work( that one is easy, i guess, i have bills to pay), visit my dad in the hospital,pay his bills, line up health care for him,see my family, oh, and i have sooooooooooooooo missed zumba! i have not been able to go back since my birthday, when i went with my daughter. i keep telling myself that i need to go for my good health, and if i am sick, who will take care of dad? i will make it back soon; next week, hopefully. i did order a new belly scarf last week- lime green- so i hope to have a chance to wear it soon.
i got a call from my doctors office today. my blood work was o.k. i am not sure of the numbers, but i will either get a copy in the mail, or i will request one when i go back for my ultrasound in a couple of weeks. i will admit that this has been the least of my worries,though. oh,jeez, that is another one of my problems. i am a worrier. i am worried about being a worrier- figures. guess i will have to work on that one,too. maybe some meditation will help.....
Tuesday, September 6, 2011
it has been a long time.....
first, an apology to my readers. i have had a medical emergency in my family, and i have not been able to blog for some time( or do much of anything else, to be honest). my dad almost died- he is 85 years old, my only remaining parent( my mom died a little over two years ago due to complications from a stroke and multiple myeloma ) . i have decided to blog about the importance of having a medical advocate, friend, loved one,etc. if you are involved in any medical situation. especially if you are in the hospital for surgery, or other treatment that renders you helpless. at the very least it helps to have two sets of ears to try to remember everything that the doctors and other health professionals are saying. i try to go to my appointments by myself, but if it is something really important, i bring my husband along to listen and take note of what is being said.
in one of my earlier blogs i said that the day i "got the news" i was at work. it really reminded me of the gary larson cartoon, where the man is talking to his dog and telling her " bad dog, ginger, you got into the trash again, etc, ". that is what the guy is saying. what ginger actually hears is " blah blah, ginger, blah, blah, ginger". so my doctor was telling me about my papillary cell thyroid cancer, and all that i heard was" bea... cancer, bea..... cancer". too bad no one was listening with me then. when i saw the radiologist before my treatment with the radioactive I-131 ( after my surgery) i had my husband with me. good thing, because it was then that i found out that my cancer had spread into my lymphatic system, and two of my parathyroids, and in total i had lost eleven lymph nodes. the surgeon did not tell me this. my endocrinologist did not have the report when i went back for a follow up visit before my treatment . so that left this poor guy, who probably thought that i already knew those things, to have to be the one to tell me. i actually looked behind me when he was talking. i thought that perhaps he was addressing someone else in the room.
health care is an inexact science. mistakes are made, situations are mishandled. but it helps to have someone to listen for you when you can not. to make sure everything that can possibly be done to help you is being done, and in a timely manner. be pushy! get second opinions if you have a feeling " in your gut" that things are not right. act on those feelings because you may only get one chance to do something that could ultimately affect every one's future.
i moved my dad from the smaller hospital, AGAINST the recommendation of his physician. it was a hard decision for me, but i knew that my dad needed serious help and that he was not getting it at this particular hospital. what they diagnosed as a stomach virus turned out to be a blood clot which was obstructing the major artery into his small and large intestines. the larger hospital diagnosed him( with the same test that the smaller hospital had done) in about an hour. they had him in emergency surgery for over 4 hours. three surgeons worked on him, and his odds for making it through the surgery were not good. but my dad is tough and he is a fighter. several people told me, including the surgeons, that had i not moved him, he would only have lived for a couple of days.
he is on a rehabilitation floor of the hospital now. his recovery has been amazing, but at 85 years old, it is a bit slower than either dad or i would like for it to be. i try to remind us both to be patient. just as soon as he can, i am moving him home with around the clock nursing until he can care for himself. i am not sure how everything is going to work out in the future, but i am glad that i was there for him when he really needed me.
oh, i have not had the time to track down my blood report. my scan was good, as i said, but i am not sure about my blood work. it seems that the report did not make it to my endocrinologists office. i called the hospital, where i had the test done, and they said that i could come by in person and they would give me a copy of the report. the hospital is an hour away from my home, and in the opposite direction of the hospital where my dad is staying. i am not sure when i will get to do this. i have an ultrasound scheduled for September 27th, with my endocrinologist, so it may just have to wait until then. of course i will share those results when i get them. i am hopefully going to be blogging on a more regular basis since my dad is mostly " out of the woods".
in one of my earlier blogs i said that the day i "got the news" i was at work. it really reminded me of the gary larson cartoon, where the man is talking to his dog and telling her " bad dog, ginger, you got into the trash again, etc, ". that is what the guy is saying. what ginger actually hears is " blah blah, ginger, blah, blah, ginger". so my doctor was telling me about my papillary cell thyroid cancer, and all that i heard was" bea... cancer, bea..... cancer". too bad no one was listening with me then. when i saw the radiologist before my treatment with the radioactive I-131 ( after my surgery) i had my husband with me. good thing, because it was then that i found out that my cancer had spread into my lymphatic system, and two of my parathyroids, and in total i had lost eleven lymph nodes. the surgeon did not tell me this. my endocrinologist did not have the report when i went back for a follow up visit before my treatment . so that left this poor guy, who probably thought that i already knew those things, to have to be the one to tell me. i actually looked behind me when he was talking. i thought that perhaps he was addressing someone else in the room.
health care is an inexact science. mistakes are made, situations are mishandled. but it helps to have someone to listen for you when you can not. to make sure everything that can possibly be done to help you is being done, and in a timely manner. be pushy! get second opinions if you have a feeling " in your gut" that things are not right. act on those feelings because you may only get one chance to do something that could ultimately affect every one's future.
i moved my dad from the smaller hospital, AGAINST the recommendation of his physician. it was a hard decision for me, but i knew that my dad needed serious help and that he was not getting it at this particular hospital. what they diagnosed as a stomach virus turned out to be a blood clot which was obstructing the major artery into his small and large intestines. the larger hospital diagnosed him( with the same test that the smaller hospital had done) in about an hour. they had him in emergency surgery for over 4 hours. three surgeons worked on him, and his odds for making it through the surgery were not good. but my dad is tough and he is a fighter. several people told me, including the surgeons, that had i not moved him, he would only have lived for a couple of days.
he is on a rehabilitation floor of the hospital now. his recovery has been amazing, but at 85 years old, it is a bit slower than either dad or i would like for it to be. i try to remind us both to be patient. just as soon as he can, i am moving him home with around the clock nursing until he can care for himself. i am not sure how everything is going to work out in the future, but i am glad that i was there for him when he really needed me.
oh, i have not had the time to track down my blood report. my scan was good, as i said, but i am not sure about my blood work. it seems that the report did not make it to my endocrinologists office. i called the hospital, where i had the test done, and they said that i could come by in person and they would give me a copy of the report. the hospital is an hour away from my home, and in the opposite direction of the hospital where my dad is staying. i am not sure when i will get to do this. i have an ultrasound scheduled for September 27th, with my endocrinologist, so it may just have to wait until then. of course i will share those results when i get them. i am hopefully going to be blogging on a more regular basis since my dad is mostly " out of the woods".
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