yesterday was my birthday. i received a lot of birthday wishes on facebook from my family and friends. i feel very, very blessed to be here for another birthday and i am grateful for that. i spent this past weekend with all of my children and grandchildren. we had a great time panning for gem stones, watching the grandchildren frolic around in the splash pools and doing their favorite thing- throwing rocks in the river. yesterday, i also received a few happy birthday phone calls which was nice. i did however receive a phone call that was not so nice. it was from my dermatologist. it seems that the place on my face that i had removed about 10 days ago, was indeed cancer. they scheduled an appointment for me with the dermatologist in the practice( different doctor than mine ) who sometimes will take care of skin cancers. i am to see him on september 7th. the nurse said that the second physician needed to see it to evaluate if he could remove it, or would need to send me to a special dermatologist who is also a plastic surgeon. i have heard that if i have to be referred to another plastic surgeon dermatologist, it would be one who works at baptist hospital, in winston-salem. i am just praying that the local dermatologist can do it.
the good news is that the cancer type is basal cell, which is the most common skin cancer. i was a little worried that it was squamous cell carcinoma- since i had one of those removed from my leg about four years ago. squamous cell is a more aggressive cancer, and can sometimes require extensive surgery and radiation. basal cell can rarely involve muscles, nerves or bones, but it is not likely to spread. if a person has had one skin cancer, they are likely to have another one. please remember this bit of information! in other words, check out any suspicious places on your skin. i really recommend that everyone have a skin check, even if you have never had skin cancer, once a year or so.
so what causes skin cancer? exposure to UV light is a biggie. either by the sunlight or tanning beds. most of us did not wear sunscreen when we were younger. that damage can not be un-done. for the past several years, i have worn sunscreen, a hat when outdoors, and i try not to go outside during the hot part of the day ( about 12 to 4pm). another possible cause is a weakened immune system. BINGO! i think that is my problem. there is not very much a person can do about that except be diligent in checking your skin, and going to the dermatologist as early as possible if you notice anything strange.
my basal cell is between my nose and eye. a tender little area, with not much skin to work with. the type of surgery generally used to remove this is called the "Mohs" procedure. the doctor sort of scraps a little, stops and sends you out to the waiting area, checks for clear margins, and scrapes again as needed before stitching you up. this can take a while, as you might imagine, but it is a very effective procedure from what i have read.
i know that basal cell carcinoma is not as serious as squamous cell or especially melanoma. having this type of skin cancer is not nearly as bad as having thyroid cancer or breast cancer. it may be sort of a side effect ( weakened immune system) though, from having had one or both. everyone is different, but what i noticed about my basal cell was a crusty little patch- sometimes red, sometimes oozing, that would sometimes be worse than other times. it would appear to go away, but then come back. i am not trying to gross anyone out, but i just would like for people to be aware of any skin changes, and to please take these seriously!
so here i go, back on the road again, so to speak. as i said, basal cell carcinoma pales compared to thyroid or breast cancer, but it is cancer, and it is troubling and aggravating. i will do what i need to do to take care of this, and i will move on. if i end up with a little scar on my face, i will just use the cliche, " you should have seen the other guy!".
Tuesday, August 30, 2016
Sunday, August 21, 2016
" yeah, the W A I T I N G is the hardest part". yes i have used this line a time or two in my blogs . thank you, tom petty.
actually, make this the third time. i had a dermatology appointment last week- to have my yearly check up. i knew that i would have to have some places ( actinic keratosis) frozen off. if left untreated, they can turn into squamous cell carcinomas. i had a squamous cell carcinoma removed from my left leg- a year after my thyroid cancer was diagnosed. i was a little nervous going to the dermatologist this time- after all , it has been a year since my breast cancer diagnosis.
call it fate, call it chance, call it darn bad luck, but guess what? i have a squamous cell carcinoma on my face. the dermatologist is pretty sure that it is squamous cell again, but we are waiting on the results from the biopsy. yes, W A I T I N G. my dermatologist removed the" place", but he said that if the biopsy does indeed confirm the squamous cell, i have to go back to see the special plastic surgeon dermatologist in the practice. the plastic surgeon does a procedure where he cuts a little, sends you in the waiting room, looks for clear margins, maybe cuts a little more, etc. then sews you up. my doctor said that it would take anywhere from 8 to 10 days to get the initial biopsy results back. i know this is not thyroid cancer. i know this is not breast cancer, but waiting for biopsy results is getting to be something that i am tired of doing !
i wear sunscreen, i wear hats, but this damage occurred when i was younger, and not as cautious about sun exposure. it is also in that tender place between your eye and nose. i am wondering, since i know two other people who have had a squamous cell removed from the exact same location, if there is something we are doing wrong. i have thought perhaps , when we apply sunscreen, we do not apply enough ( or any) to this area because we are afraid of getting some in our eye(s)? it does burn if you get it in your eye, by the way.
as luck would also have it, i had to work this past saturday. i had prepared my fellow peeps about my appearance. i have several red areas on my face, as well as the ubiquitous "spot" band aid that dermatologists seem to be so fond of. no way to prepare the customers, though. i wore my biggest frame reading glasses, but even that did not seem to help. as i said in a facebook post last week, i just told my customers that i got into a fight with my dermatologist and he won.
besides wearing sun screen and hats, we should all be diligent about our skin. i think almost everyone should have a skin check once a year. and of course, if you see something that looks different, appears suddenly, has an irregular shape or color , go see the dermatologist right away. if you have had any kind of cancer, your immune system is weakened. this is especially true if you have had to undergo chemotherapy, radiation, or the RAI-131 treatment.
i will of course report back as to what i found out. until then, we will all be waiting.........
call it fate, call it chance, call it darn bad luck, but guess what? i have a squamous cell carcinoma on my face. the dermatologist is pretty sure that it is squamous cell again, but we are waiting on the results from the biopsy. yes, W A I T I N G. my dermatologist removed the" place", but he said that if the biopsy does indeed confirm the squamous cell, i have to go back to see the special plastic surgeon dermatologist in the practice. the plastic surgeon does a procedure where he cuts a little, sends you in the waiting room, looks for clear margins, maybe cuts a little more, etc. then sews you up. my doctor said that it would take anywhere from 8 to 10 days to get the initial biopsy results back. i know this is not thyroid cancer. i know this is not breast cancer, but waiting for biopsy results is getting to be something that i am tired of doing !
i wear sunscreen, i wear hats, but this damage occurred when i was younger, and not as cautious about sun exposure. it is also in that tender place between your eye and nose. i am wondering, since i know two other people who have had a squamous cell removed from the exact same location, if there is something we are doing wrong. i have thought perhaps , when we apply sunscreen, we do not apply enough ( or any) to this area because we are afraid of getting some in our eye(s)? it does burn if you get it in your eye, by the way.
as luck would also have it, i had to work this past saturday. i had prepared my fellow peeps about my appearance. i have several red areas on my face, as well as the ubiquitous "spot" band aid that dermatologists seem to be so fond of. no way to prepare the customers, though. i wore my biggest frame reading glasses, but even that did not seem to help. as i said in a facebook post last week, i just told my customers that i got into a fight with my dermatologist and he won.
besides wearing sun screen and hats, we should all be diligent about our skin. i think almost everyone should have a skin check once a year. and of course, if you see something that looks different, appears suddenly, has an irregular shape or color , go see the dermatologist right away. if you have had any kind of cancer, your immune system is weakened. this is especially true if you have had to undergo chemotherapy, radiation, or the RAI-131 treatment.
i will of course report back as to what i found out. until then, we will all be waiting.........
Wednesday, August 10, 2016
" oh, Lord, don't keep me up all night, side by side with the moon. with its desolate eyes miles from the sunrise, the darkness inviting a tune, the insomniac's lullaby" from paul simon's Insomniac's Lullaby
i had my second to last, probably, physical therapy session this week. unfortunately my insurance company only allows so many visits per year. i wonder when health care in this country will focus more on what keeps us healthy, instead of mainly just treating our illnesses? physical therapy has been one of the best things that i have done for myself- as far as taking care of myself. my physicians did not suggest it, but i asked for treatment, and i did get an order written for the physical therapy.
this week, my physical therapist measured my " lympedema arm" as i call it, and compared the measurements to what they were before i had the lymphatic massage. all of the measurements were better than before, and by that i mean my arm is now somewhat smaller. most of the measurements were just a little better, but one was a whole centimeter smaller. and maybe it is just me, but i feel better. the swelling was also in my side, chest and back. the physical therapist did not measure this, but she said that she could tell ( and i can,too) that the swelling has gone down quite a bit from these areas. lymphedema is a chronic condition, and can not be cured. but it can be managed, and a person can feel better when receiving the right care. of course, i have to do my part,too. i have to wear my compression sleeve and do my massage at home. infection ( cellulitis) can be a serious complication, so i have to be careful not to injure myself- that is a little tough because i am on the clumsy side. also, any infections that i get- such as sinus infections,etc. need to be addressed as soon as possible. i used to think that this was due just to the chemotherapy, and what it did to my immune system. this is partly the case, but that old lymphatic highway is congested now, so that is the other part.
this is just an example of being your own best patient advocate. knowing your body, and what is best for you. recently, i had a conversation with a friend of mine who is also recovering from breast cancer. she said that she is regretting a major decision that she made regarding her treatment. it was a tough call- her doctors could not agree on a particular part of her treatment. in the end, she just had to make the call and go with it. after the procedures were over, two other doctors came out and said that she should not have made the decision that she did. it has not been a good outcome for her, so now what? well, sometimes you just have to make a decision, run with it, and not look back. i told her that all we can do is research the problem, get several opinions, and choose what we think would be the best treatment for us.
i will use this as an example. when i got my RAI- 131 treatment for thyroid cancer, i got a monster dose. that was what the radiologist ordered, and because my thyroid cancer had spread to my lymphatic system, and a couple of the tumors had broken open, i went with his recommendation. now, six years later, the effective dose has been proven to be much lower than the dose that i received. there are some people, though there is no firm research on this, who claim that the RAI-131 may have some link with breast cancer. i do not know exactly what caused my breast cancer, five years after having thyroid cancer. i do know that they are somehow related, but this theory has not yet been proven. do i regret the decision that i made six years ago about having the large dose of the I-131? good question. i used the information that was available to me at the time, made my decision, and ran with it. hind sight is always 20/20. the radiologist made the call on what he thought was best for me, and at the time, i agreed with that decision.
my friend that i was talking to told me that she has to let her" bad treatment decision " go and move forward. that is all that any of us can do, ultimately. just make our best decision, go with it, and move forward. this is easier said than done, though. as far as my decision about the I-131 goes, i might just give you a different answer about that monster dose- depending on when you ask me about it.
this week, my physical therapist measured my " lympedema arm" as i call it, and compared the measurements to what they were before i had the lymphatic massage. all of the measurements were better than before, and by that i mean my arm is now somewhat smaller. most of the measurements were just a little better, but one was a whole centimeter smaller. and maybe it is just me, but i feel better. the swelling was also in my side, chest and back. the physical therapist did not measure this, but she said that she could tell ( and i can,too) that the swelling has gone down quite a bit from these areas. lymphedema is a chronic condition, and can not be cured. but it can be managed, and a person can feel better when receiving the right care. of course, i have to do my part,too. i have to wear my compression sleeve and do my massage at home. infection ( cellulitis) can be a serious complication, so i have to be careful not to injure myself- that is a little tough because i am on the clumsy side. also, any infections that i get- such as sinus infections,etc. need to be addressed as soon as possible. i used to think that this was due just to the chemotherapy, and what it did to my immune system. this is partly the case, but that old lymphatic highway is congested now, so that is the other part.
this is just an example of being your own best patient advocate. knowing your body, and what is best for you. recently, i had a conversation with a friend of mine who is also recovering from breast cancer. she said that she is regretting a major decision that she made regarding her treatment. it was a tough call- her doctors could not agree on a particular part of her treatment. in the end, she just had to make the call and go with it. after the procedures were over, two other doctors came out and said that she should not have made the decision that she did. it has not been a good outcome for her, so now what? well, sometimes you just have to make a decision, run with it, and not look back. i told her that all we can do is research the problem, get several opinions, and choose what we think would be the best treatment for us.
i will use this as an example. when i got my RAI- 131 treatment for thyroid cancer, i got a monster dose. that was what the radiologist ordered, and because my thyroid cancer had spread to my lymphatic system, and a couple of the tumors had broken open, i went with his recommendation. now, six years later, the effective dose has been proven to be much lower than the dose that i received. there are some people, though there is no firm research on this, who claim that the RAI-131 may have some link with breast cancer. i do not know exactly what caused my breast cancer, five years after having thyroid cancer. i do know that they are somehow related, but this theory has not yet been proven. do i regret the decision that i made six years ago about having the large dose of the I-131? good question. i used the information that was available to me at the time, made my decision, and ran with it. hind sight is always 20/20. the radiologist made the call on what he thought was best for me, and at the time, i agreed with that decision.
my friend that i was talking to told me that she has to let her" bad treatment decision " go and move forward. that is all that any of us can do, ultimately. just make our best decision, go with it, and move forward. this is easier said than done, though. as far as my decision about the I-131 goes, i might just give you a different answer about that monster dose- depending on when you ask me about it.
Monday, July 25, 2016
"Take a load off Anny, take a load for free. Take a load off Anny, and, and, and.... you put the load right on me." lyrics from "the weight" by the band
something amazing has happened! i actually put my tai chi dvd in my laptop and did the workout. if you have read some of my previous blogs, you will know that my tai chi dvd and i were having a staring contest( the dvd had been winning up to now). this is a beginners tai chi dvd. on the cover of the dvd, it says that it is for "older adults and the physically challenged!". not sure why they used an exclamation point after that description, but i unfortunately fall into both categories. on the dvd, there is an instructor, and a student helper. the student helper's name is claire. claire is a very pleasant older adult. she knows all of the moves, moves gracefully, and does not break a sweat. claire has about 20 years on me. unlike claire, i do not know the moves, am not graceful, and actually sweated pretty profusely. the instructor kept saying that "claire is a dancer". all i know is that claire kicked my butt.
that said, i think that i will continue with the tai chi. i would rather attend a live class( claire does not talk very much on my dvd). i found that with zumba, after doing the dvd a few times ,just the dvd is boring. a live class is much more fun. in a live class, the routines change from class to class, and there is just something more inspiring about being in a live class. my physical therapist told me today, that even not considering my bad knee, it would take me approximately a year to get back to where i was physically able to attend a whole zumba class. sad face here. of course, i know that i would have to get my knee replaced before i could go back. anyone need a pair of zumba shoes and several belly scarves?
here are the pros that i have discovered with tai chi:
1. it can be a gentle, strengthening exercise.
2. it focuses on deep and complete breathing.
3. it improves balance, thus limiting the possibility of falls.
4. it can be calming and relaxing.
5. there is basically no special equipment required ( although comfortable yoga type pants and a tee shirt are useful).
6. it helps with flexibility
7. it is supposed to increase energy levels.
there are only a few cons:( as i see it)
1. it is not zumba
2. currently, there are no live classes being taught in my area.
joking aside, i think that this is pretty much the perfect exercise for me now- at this point in my recovery from cancer. i really enjoy walking, which i do as often as possible, but the tai chi is a good addition to my walking. and since tai chi is supposed to help with balance and preventing falls, this might actually help when i am walking. i will let you use your imagination on this point.
i am currently still going to physical therapy for lymphatic massage. "the weight" is literal in my case. i still have a lot of swelling in my chest, side, back and arm, but my physical therapist is making quite a bit of progress. she said that not all people respond to the massage, but that obviously i am. my husband went with me to one of my sessions, and my physical therapist taught him how to do the massage at home. it is so kind of him to do this for me, and it is helping as well. i have found that working ( 9 hours on my feet) makes the lymphedema worse. not too much that i can do about that at this point, except for limiting work as much as is possible for me and my work schedule.
as i understand it, lymphedema is a chronic condition that can be managed, but not completely cured. i still wear my compression sleeve, especially when i am working. early diagnosis and treatment are the keys here. i strongly advise anyone who thinks that they may have lymphedema, to consult with a physical therapist who is trained to treat lymphedema patients. getting physical therapy for this has been one of the most positive things that i have done for myself . again, please be your own best patient advocate, and do what you can to make things better for yourself.
so, i am planning on continuing my tai chi dvd, and giving claire a run for her money. i would not place any bets on me as yet. after all, claire is a dancer.....
that said, i think that i will continue with the tai chi. i would rather attend a live class( claire does not talk very much on my dvd). i found that with zumba, after doing the dvd a few times ,just the dvd is boring. a live class is much more fun. in a live class, the routines change from class to class, and there is just something more inspiring about being in a live class. my physical therapist told me today, that even not considering my bad knee, it would take me approximately a year to get back to where i was physically able to attend a whole zumba class. sad face here. of course, i know that i would have to get my knee replaced before i could go back. anyone need a pair of zumba shoes and several belly scarves?
here are the pros that i have discovered with tai chi:
1. it can be a gentle, strengthening exercise.
2. it focuses on deep and complete breathing.
3. it improves balance, thus limiting the possibility of falls.
4. it can be calming and relaxing.
5. there is basically no special equipment required ( although comfortable yoga type pants and a tee shirt are useful).
6. it helps with flexibility
7. it is supposed to increase energy levels.
there are only a few cons:( as i see it)
1. it is not zumba
2. currently, there are no live classes being taught in my area.
joking aside, i think that this is pretty much the perfect exercise for me now- at this point in my recovery from cancer. i really enjoy walking, which i do as often as possible, but the tai chi is a good addition to my walking. and since tai chi is supposed to help with balance and preventing falls, this might actually help when i am walking. i will let you use your imagination on this point.
i am currently still going to physical therapy for lymphatic massage. "the weight" is literal in my case. i still have a lot of swelling in my chest, side, back and arm, but my physical therapist is making quite a bit of progress. she said that not all people respond to the massage, but that obviously i am. my husband went with me to one of my sessions, and my physical therapist taught him how to do the massage at home. it is so kind of him to do this for me, and it is helping as well. i have found that working ( 9 hours on my feet) makes the lymphedema worse. not too much that i can do about that at this point, except for limiting work as much as is possible for me and my work schedule.
as i understand it, lymphedema is a chronic condition that can be managed, but not completely cured. i still wear my compression sleeve, especially when i am working. early diagnosis and treatment are the keys here. i strongly advise anyone who thinks that they may have lymphedema, to consult with a physical therapist who is trained to treat lymphedema patients. getting physical therapy for this has been one of the most positive things that i have done for myself . again, please be your own best patient advocate, and do what you can to make things better for yourself.
so, i am planning on continuing my tai chi dvd, and giving claire a run for her money. i would not place any bets on me as yet. after all, claire is a dancer.....
Tuesday, July 19, 2016
"you took my joy, i want it back! you took my joy, i want it back." by lucinda williams
that is pretty much the way that i am feeling right now. and have felt, really, since i lost my butterfly. and of course, since i lost my breasts. i took this picture for " the Truth about thyroid cancer". as i recall, those of us who have had thyroid cancer have about a 30% chance of having another primary cancer. the percentage may be more or less than 30%- i have seen it all over the place, but 30% seems about right to me. i had a skin cancer removed from my leg ( squamous cell) about a year after having thyroid cancer. i did not make a big deal about my skin cancer - all i had to have done was just the surgical removal of the cancerous growth. no chemotherapy this time, but i did have to change my dermatology appointments from once yearly to twice a year. hind sight is always 20/20 as they say, but that should have gotten my attention. would i have done anything differently? perhaps. i was on a very low dose estrogen/progesterone regiment for menopausal symptoms. while i do not believe, after a lot of research on my part, that the hormonal therapy alone caused my breast cancer, i think that the tendency to have another primary cancer, and the fact that hormonal therapy has been proven to speed things along if you have a predisposition to breast cancer, would most likely have caused me to stop the hormones.
at the end of next month, it will be a year since my last round of chemotherapy. honestly, it has been a hard couple of years for me. going through the chemotherapy, mastectomy surgery, reconstruction surgery and having to take the anti-estrogen drug that i will be on for the next ten years have taken quite a bit out of me. i often wonder how much harder this has been since i also had the thyroid cancer. some of the symptoms that i have had from the chemotherapy are symptoms that a patient with thyroid cancer has. you could say that it has been a double whammy for me!
after my treatment for breast cancer stopped, except for taking the anti-estrogen drug of course, i was at a loss of what to do. holistic care was not offered in my small town. deciding that i needed some physical therapy for the lymphedema in my left arm, and getting one of my doctors to write an order for this, was one of the best decisions concerning my health care that i have made. i have received valuable advice from my physical therapist. not only has she helped me with the lymphedema, but she has been working on my neck issues that most likely occurred after my thyroid cancer surgery. we tend to forget that our body parts work together. losing the eleven lymph nodes in my neck certainly added on to the problems of losing the three in my left arm area. ( i will not bore you with the" highway analogy" again- although it is a very good one!)
an acquaintance of mine recently passed away from cancer .when this happens, it always makes me pause and take note of my life. am i doing all that i can to get healthy? do i have a good quality of life? am i doing what i want to be doing with what is left of my life? in other words, am i getting my joy back? so far the reviews are mixed. i am trying hard to get healthy, but more needs to be done. i am not sure how to get all of my joy back, but i am working on that,too. i am so fortunate to have wonderful family and friends who offer support, care and unconditional love.
the take away from this blog, i hope, is that others reading this will seriously consider what they need to do to be healthier and happier. do not wait for others to do it for you. do not expect your doctors to have all of the answers. get advice from all kinds of health care providers- doctors, physical therapists, even pharmacists, and make your best decisions on what is best for your good health care. i wish you luck, i wish you good health, but most of all, i wish you JOY. by the way, it is so nice to have hair again! ;)
at the end of next month, it will be a year since my last round of chemotherapy. honestly, it has been a hard couple of years for me. going through the chemotherapy, mastectomy surgery, reconstruction surgery and having to take the anti-estrogen drug that i will be on for the next ten years have taken quite a bit out of me. i often wonder how much harder this has been since i also had the thyroid cancer. some of the symptoms that i have had from the chemotherapy are symptoms that a patient with thyroid cancer has. you could say that it has been a double whammy for me!
after my treatment for breast cancer stopped, except for taking the anti-estrogen drug of course, i was at a loss of what to do. holistic care was not offered in my small town. deciding that i needed some physical therapy for the lymphedema in my left arm, and getting one of my doctors to write an order for this, was one of the best decisions concerning my health care that i have made. i have received valuable advice from my physical therapist. not only has she helped me with the lymphedema, but she has been working on my neck issues that most likely occurred after my thyroid cancer surgery. we tend to forget that our body parts work together. losing the eleven lymph nodes in my neck certainly added on to the problems of losing the three in my left arm area. ( i will not bore you with the" highway analogy" again- although it is a very good one!)
an acquaintance of mine recently passed away from cancer .when this happens, it always makes me pause and take note of my life. am i doing all that i can to get healthy? do i have a good quality of life? am i doing what i want to be doing with what is left of my life? in other words, am i getting my joy back? so far the reviews are mixed. i am trying hard to get healthy, but more needs to be done. i am not sure how to get all of my joy back, but i am working on that,too. i am so fortunate to have wonderful family and friends who offer support, care and unconditional love.
the take away from this blog, i hope, is that others reading this will seriously consider what they need to do to be healthier and happier. do not wait for others to do it for you. do not expect your doctors to have all of the answers. get advice from all kinds of health care providers- doctors, physical therapists, even pharmacists, and make your best decisions on what is best for your good health care. i wish you luck, i wish you good health, but most of all, i wish you JOY. by the way, it is so nice to have hair again! ;)
Saturday, July 9, 2016
" i can't talk now, i'm in a parade; can't talk right now, i'm in a parade....... diagnosis: thyroid and breast cancer; prognosis: guarded; occupation: pharmacist. " lyrics ( changed a little) from a new song by paul simon, called " in a parade"
when i am at work, especially, i feel exactly like i am in a parade. my thyroid medication is still off, so add that to chemo brain , the lymphedema, and the other things that breast cancer brings with it and i feel like it takes every bit of energy that i have to march on down the road. i can do it, and i would never put anyone in danger, but it takes a lot out of me. i also have to remember the sad fact that i am not in my twenties anymore. i feel like i should be able to do everything that i was doing before my cancer diagnoses and not feel tired. even a family gathering, or a long day out shopping, wears me out. FATIGUE is one of my worst enemies. i had major fatigue before both cancers were diagnosed, so it is troubling to have it going on now.
some people think that after your thyroid is removed, you take a tablet and voila! you are good to go. as the majority of people reading this blog know, that is simply not the case. in april, my thyroid levels were too high, so my doctor had to go down on my dose. but now, i think they are a little too low- i tend to crash, or feel like it, in the late afternoon. if you want an intelligent conversation with me, it would be best to call me before about three or four in the afternoon. after that, i will be in a parade. too much talking, lights, noise of any kind, to name a few things, simply wear me out. i feel like my eyes glass over. you are probably wondering if you should perhaps get your prescriptions filled in the morning when i am working? like i said, i push through the fatigue, but it does cost me. i pay the fare usually the next day- i am pretty much toast and just rest, usually. and if it makes you feel any better, i do not work two days in a row. i always have at least one day between work days.
believe it or not, i am not complaining. i do not work a whole lot- only about 4 or so days a month. but i would like to feel better on a daily basis. and i am getting there, but it is slow going. if i could recommend one, well two actually, things to patients post thyroid cancer and/or breast cancer surgery, it would be physical therapy and therapeutic massage. i did not get any after my thyroid cancer, and i am dealing with those problems now. i had eleven lymph nodes removed from my neck, as well as my entire thyroid and two parathyroids. i did not know about the "lane merging theory" until my physical therapist explained it to me when i started physical therapy last month. i had three more lymph nodes removed with my breast cancer. i have lymphedema in one arm, but also swelling in my side, back and neck area. the problems with my neck occurred after my thyroid cancer surgery. it would have helped me tremendously if i had gone to PT then. the therapeutic massage has been great as well. i think those two therapies go hand in hand, pun intended.
i have incorporated a lot of holistic, you might call them, techniques to try to regain some of my strength and feel better. mild exercise, physical therapy and massage, vitamins, trying to get more hours of sleep each night, having a better diet, etc. i can not return to zumba, which i had previously done for 5 years. this is partly due to my lack of energy, but also i was supposed to have one of my knees replaced a week before my breast cancer surgery. boobs trumped knee, and i will have to wait a while for my knee to be fixed. besides walking, i think that tai chi would be a good, gentle exercise for me. unfortunately, there are no classes at the wellness center near me. i have purchased a DVD on basic tai chi ( for old people and the physically challenged- i fall into both categories, i am afraid). so far, all i have done is take the wrapper off the DVD. it is propped in front of my DVD player, and so far, all that we do is just stare at each other. i am hoping to pop it in the DVD player one day soon.
everything i have said in this blog harks back to being your own best patient advocate. if you are not feeling well, find out what other things might benefit you. do not rely just on that one thyroid hormone pill. no matter how good the medication, it can never replace a healthy thyroid. adding other, holistic methods is an important key to feeling as good as you can, i think. even with all of this, though, i still have times, every day, when i can not cope as well as i did before thyroid and breast cancer. i suppose it is like that for almost everyone who is dealing with these problems. parade, anyone?
some people think that after your thyroid is removed, you take a tablet and voila! you are good to go. as the majority of people reading this blog know, that is simply not the case. in april, my thyroid levels were too high, so my doctor had to go down on my dose. but now, i think they are a little too low- i tend to crash, or feel like it, in the late afternoon. if you want an intelligent conversation with me, it would be best to call me before about three or four in the afternoon. after that, i will be in a parade. too much talking, lights, noise of any kind, to name a few things, simply wear me out. i feel like my eyes glass over. you are probably wondering if you should perhaps get your prescriptions filled in the morning when i am working? like i said, i push through the fatigue, but it does cost me. i pay the fare usually the next day- i am pretty much toast and just rest, usually. and if it makes you feel any better, i do not work two days in a row. i always have at least one day between work days.
believe it or not, i am not complaining. i do not work a whole lot- only about 4 or so days a month. but i would like to feel better on a daily basis. and i am getting there, but it is slow going. if i could recommend one, well two actually, things to patients post thyroid cancer and/or breast cancer surgery, it would be physical therapy and therapeutic massage. i did not get any after my thyroid cancer, and i am dealing with those problems now. i had eleven lymph nodes removed from my neck, as well as my entire thyroid and two parathyroids. i did not know about the "lane merging theory" until my physical therapist explained it to me when i started physical therapy last month. i had three more lymph nodes removed with my breast cancer. i have lymphedema in one arm, but also swelling in my side, back and neck area. the problems with my neck occurred after my thyroid cancer surgery. it would have helped me tremendously if i had gone to PT then. the therapeutic massage has been great as well. i think those two therapies go hand in hand, pun intended.
i have incorporated a lot of holistic, you might call them, techniques to try to regain some of my strength and feel better. mild exercise, physical therapy and massage, vitamins, trying to get more hours of sleep each night, having a better diet, etc. i can not return to zumba, which i had previously done for 5 years. this is partly due to my lack of energy, but also i was supposed to have one of my knees replaced a week before my breast cancer surgery. boobs trumped knee, and i will have to wait a while for my knee to be fixed. besides walking, i think that tai chi would be a good, gentle exercise for me. unfortunately, there are no classes at the wellness center near me. i have purchased a DVD on basic tai chi ( for old people and the physically challenged- i fall into both categories, i am afraid). so far, all i have done is take the wrapper off the DVD. it is propped in front of my DVD player, and so far, all that we do is just stare at each other. i am hoping to pop it in the DVD player one day soon.
everything i have said in this blog harks back to being your own best patient advocate. if you are not feeling well, find out what other things might benefit you. do not rely just on that one thyroid hormone pill. no matter how good the medication, it can never replace a healthy thyroid. adding other, holistic methods is an important key to feeling as good as you can, i think. even with all of this, though, i still have times, every day, when i can not cope as well as i did before thyroid and breast cancer. i suppose it is like that for almost everyone who is dealing with these problems. parade, anyone?
Thursday, May 19, 2016
Today is my six year "cancerversary" with thyroid cancer........some things i have learned.
i almost forgot what today is. i always worry when my six months checkups for thyroid cancer roll around, but i sometimes forget my "cancerversary". i wish i could say that they have been six good years- but with my one year "cancerversary" from breast cancer coming up in just three days, that is not exactly true. i still think, as now some others do, that the two cancers are somehow related. looking back, i guess it was inevitable that i would have breast cancer,too, but i might have done one thing different- stopped my hormone replacement therapy earlier. yes, it made me feel good- it stops the night sweats, makes your skin more elastic, improves mood( my husband liked this one), helps protect you from colon cancer( this one runs in my family), and also is helpful in preventing osteoporosis. my sister, who has never taken estrogen/progesterone therapy, has osteoporosis. i do not have osteoporosis. in fact, my endocrinologist says that my bone density tests have actually improved some over the past few years. of course, my sister does not have breast cancer, thank goodness. this is a case of weighing the risks versus the benefits of prescription medicine. i always tell my patients that they should always weigh the benefits versus the risks of any medication. talk to your doctor, weigh your options, but i suppose it comes down to luck in the end.
my husband did not forget what today is! he picked a beautiful bouquet of flowers from our flower garden for me. he planted a lot of what we have growing in our garden now, six years ago. he wanted to give me a "healing garden" to enjoy while i was recovering from thyroid cancer. little did he know that i would need the beauty and serenity of those flowers last year,too.
i have learned a lot of things over the past six years. i have seen things from the patient's point of view. i am used to being in control at work- i like to jokingly call it "flying the plane". it was not easy for me to understand and accept the fact that i was no longer in control of things. other people were taking care of me, which was sometimes hard to accept. i have said in the past that my daddy raised me to take care of myself and others. while that is true, it is also my personality to feel like i have to be in control of everything. at times, that has gotten me into trouble. i am better about accepting help from others, but far from perfect at doing so. i am a work in progress, as the saying goes.
i have learned to appreciate every day and the beauty in the world around me. my husband and i live out in the country. way, way out in the country! we do have some neighbors, but some of our closest neighbors are deer, bear, and other wildlife. i think that the peace and quiet of this environment has really helped me to begin to recover from my cancers. i have made some major life decisions lately, and am excited to begin the new chapter in my life. one important thing that i have learned is not to take life for granted. make the most of your life, appreciate every good thing, be grateful and actively seek out joy. there you have it- some important things that i have learned.
i would like to thank everyone who has read or hopefully still reads my blog(s). i appreciate your kind comments and your support more than you could know.
my husband did not forget what today is! he picked a beautiful bouquet of flowers from our flower garden for me. he planted a lot of what we have growing in our garden now, six years ago. he wanted to give me a "healing garden" to enjoy while i was recovering from thyroid cancer. little did he know that i would need the beauty and serenity of those flowers last year,too.
i have learned a lot of things over the past six years. i have seen things from the patient's point of view. i am used to being in control at work- i like to jokingly call it "flying the plane". it was not easy for me to understand and accept the fact that i was no longer in control of things. other people were taking care of me, which was sometimes hard to accept. i have said in the past that my daddy raised me to take care of myself and others. while that is true, it is also my personality to feel like i have to be in control of everything. at times, that has gotten me into trouble. i am better about accepting help from others, but far from perfect at doing so. i am a work in progress, as the saying goes.
i have learned to appreciate every day and the beauty in the world around me. my husband and i live out in the country. way, way out in the country! we do have some neighbors, but some of our closest neighbors are deer, bear, and other wildlife. i think that the peace and quiet of this environment has really helped me to begin to recover from my cancers. i have made some major life decisions lately, and am excited to begin the new chapter in my life. one important thing that i have learned is not to take life for granted. make the most of your life, appreciate every good thing, be grateful and actively seek out joy. there you have it- some important things that i have learned.
i would like to thank everyone who has read or hopefully still reads my blog(s). i appreciate your kind comments and your support more than you could know.
Friday, April 22, 2016
the results blog.....
not a very original title for a blog, but here goes! i saw my endocrinologist yesterday afternoon and got my six month test results. i was hoping that she would let me go to once yearly testing , but she is not ready to do that yet. as i have said before, i had an aggressive type of thyroid cancer, and the beasties in my neck are prone to return when you least expect it. i asked my doctor one time if, like some other cancers, thyroid cancer had a five year "expiration" date . she said unfortunately no, i will have to be tested for the rest of my life . my doctor had one patient who had a recurrence after seven years. when people say that thyroid cancer is the" good "cancer, they forget the forever testing and the fact that patients have to take a thyroid replacement hormone for the rest of their lives. it is hard to determine a good dose of thyroid replacement hormone - one that will not make the patient feel terrible, yet one that will be effective. i thought that my dose might be too low, but i was mistaken.
my labs were good- no measurable thyroglobulin. that is the one test that all thyroid cancer patients hold their breaths on. my thyroglobulin levels were measurable and i had antibodies (also bad) for about three years. then one day..... poof, they were gone. did it take the RAI treatment that long to work? did my immune system finally tell those sarah palin, aka rogue thyroid cancer cells, to pack their bags and leave? who knows, but that certainly was a day to celebrate!
as i said earlier, my TSH and T4 levels indicated that my thyroid replacement dose needed to be reduced, not increased. i have been struggling with fatigue lately, so i was sort of hoping that i just needed an adjustment up in my dose to feel better. my doctor and i negotiated a deal- one of the many reasons i love her- and i am to take a half tablet once a week. this does not sound like much, but it may be enough to get my TSH up and my T4 down enough to satisfy everyone. one of the many troublesome things about having an extremely low TSH, with the resulting high T4 can do is to precipitate osteoporosis. this is especially important since i am on an estrogen blocking medication that can also increase the risk of osteoporosis. my next testing is in october so hopefully things will settle out enough to please everyone.
my bone density test actually showed improvement since last time. my doctor was flummoxed as to why this was. she kept staring at my results. my doctor's expression sort of reminded me of how i look when i am searching for something at the grocery store, and they are out. i just keep staring for a few minutes as if that will cause the product to magically appear. my doctor thinks that maybe i have not been taking the arimidex long enough for the drug to negatively affect my bone density. i think that the fact that i take a pretty large prescription dose of vitamin D ,and have increased my dairy food consumption( calcium in foods is better absorbed by the body as compared to supplements , and less likely to cause kidney stones), has been helpful. i have also added more exercise to my routine. i believe that the combination of these things might explain the improvement.
so one cancer out of the way for a while! if i can get through my CAT scan next month, i should be worry free( i hope) until october. then we begin again.
my labs were good- no measurable thyroglobulin. that is the one test that all thyroid cancer patients hold their breaths on. my thyroglobulin levels were measurable and i had antibodies (also bad) for about three years. then one day..... poof, they were gone. did it take the RAI treatment that long to work? did my immune system finally tell those sarah palin, aka rogue thyroid cancer cells, to pack their bags and leave? who knows, but that certainly was a day to celebrate!
as i said earlier, my TSH and T4 levels indicated that my thyroid replacement dose needed to be reduced, not increased. i have been struggling with fatigue lately, so i was sort of hoping that i just needed an adjustment up in my dose to feel better. my doctor and i negotiated a deal- one of the many reasons i love her- and i am to take a half tablet once a week. this does not sound like much, but it may be enough to get my TSH up and my T4 down enough to satisfy everyone. one of the many troublesome things about having an extremely low TSH, with the resulting high T4 can do is to precipitate osteoporosis. this is especially important since i am on an estrogen blocking medication that can also increase the risk of osteoporosis. my next testing is in october so hopefully things will settle out enough to please everyone.
my bone density test actually showed improvement since last time. my doctor was flummoxed as to why this was. she kept staring at my results. my doctor's expression sort of reminded me of how i look when i am searching for something at the grocery store, and they are out. i just keep staring for a few minutes as if that will cause the product to magically appear. my doctor thinks that maybe i have not been taking the arimidex long enough for the drug to negatively affect my bone density. i think that the fact that i take a pretty large prescription dose of vitamin D ,and have increased my dairy food consumption( calcium in foods is better absorbed by the body as compared to supplements , and less likely to cause kidney stones), has been helpful. i have also added more exercise to my routine. i believe that the combination of these things might explain the improvement.
so one cancer out of the way for a while! if i can get through my CAT scan next month, i should be worry free( i hope) until october. then we begin again.
Thursday, April 14, 2016
you know that feeling you had in school when you had an important test coming up and you felt that had not studied enough???.........
this week and next are test weeks for me. i only had one thyroid cancer testing session last year, due to the whole breast cancer issue. for the past five years, i have endured twice yearly testing- ultrasounds, blood work, and new this year, bone density tests. i get about as nervous as a caged tiger at the zoo when these tests are coming up. you might think that after five years i would be a pro, and it would not bother me. i was slowly getting there, but the fact that i had breast cancer a few months ago sort of set me back, you might say.
it would be nice if i could find some way to deal with this "scan anxiety" as i have heard it referred to. one good thing about my thyroid cancer testing is that i get to visit my daughter and her family who happen to live four hours away. my endocrinologist's office is in the same city , so it is a kind of reward for me. i try to focus on the joy of seeing my daughter, grandson, and son in law. that does help a lot, but the bottom line is, when it comes to test day, it is me alone in that room. well, the ultrasound technician is there- looking for goblins in my neck. but of course she is just doing her job.
as i mentioned, the bone density test is new this year. i have had two in the past- five years apart- due to the fact that thyroid medication can cause osteoporosis. so far this year, i have had two bone density tests. the estrogen blocking medication that i take to hopefully prevent a breast cancer recurrence also causes osteoporosis. i take a prescription dose of vitamin d to hopefully help my bones. i can not take calcium because i had a kidney stone last year which was probably, at least partly, caused by the calcium supplement that i was taking. calcium from dairy foods and a few other sources are best- they are absorbed better by the body. i try to include enough of them in my diet, but not too much. my cholesterol has been good so far, but dairy foods can certainly affect your cholesterol.
another thing that helps prevent osteoporosis, is weight bearing exercise. i am walking now, fairly often, and i have re-joined a wellness center. i am hoping that adding some more exercise will help,too. no, i have not been able to return to zumba yet! i will probably have to have my knee fixed before i can go back to zumba classes. but i am tired of doctors, no offense, and surgery at the present time, so shaking my booty, as i loved doing, will just have to wait a while longer. i did buy a tai chi DVD. so far, the DVD and i have just had a staring contest( it is sitting near my TV). to paraphrase a john prine song, " the DVD tried to stare me down, and won"- for now that is!
so i have the big reveal show with my endocrinologist next week. i get another chance to visit with my daughter and her family. that is the good news. i hope there will be more good news when i get my test results from my doctor. i feel like i should have done more, somehow. test anxiety, i guess.
of course, i also have a CAT scan with contrast dye scheduled for next month with my oncologist. this is to check to see if my breast cancer has spread to my lungs or bones. i think that i will plan on visiting my son, daughter in law, grandson, and granddaughter after this test. they live near my oncologist. spending a little time with them is another good thing for me to look forward to.
so my overall plan is to focus on the good things in my life, and let the chips, or in this case, tests, fall where they may.
it would be nice if i could find some way to deal with this "scan anxiety" as i have heard it referred to. one good thing about my thyroid cancer testing is that i get to visit my daughter and her family who happen to live four hours away. my endocrinologist's office is in the same city , so it is a kind of reward for me. i try to focus on the joy of seeing my daughter, grandson, and son in law. that does help a lot, but the bottom line is, when it comes to test day, it is me alone in that room. well, the ultrasound technician is there- looking for goblins in my neck. but of course she is just doing her job.
as i mentioned, the bone density test is new this year. i have had two in the past- five years apart- due to the fact that thyroid medication can cause osteoporosis. so far this year, i have had two bone density tests. the estrogen blocking medication that i take to hopefully prevent a breast cancer recurrence also causes osteoporosis. i take a prescription dose of vitamin d to hopefully help my bones. i can not take calcium because i had a kidney stone last year which was probably, at least partly, caused by the calcium supplement that i was taking. calcium from dairy foods and a few other sources are best- they are absorbed better by the body. i try to include enough of them in my diet, but not too much. my cholesterol has been good so far, but dairy foods can certainly affect your cholesterol.
another thing that helps prevent osteoporosis, is weight bearing exercise. i am walking now, fairly often, and i have re-joined a wellness center. i am hoping that adding some more exercise will help,too. no, i have not been able to return to zumba yet! i will probably have to have my knee fixed before i can go back to zumba classes. but i am tired of doctors, no offense, and surgery at the present time, so shaking my booty, as i loved doing, will just have to wait a while longer. i did buy a tai chi DVD. so far, the DVD and i have just had a staring contest( it is sitting near my TV). to paraphrase a john prine song, " the DVD tried to stare me down, and won"- for now that is!
so i have the big reveal show with my endocrinologist next week. i get another chance to visit with my daughter and her family. that is the good news. i hope there will be more good news when i get my test results from my doctor. i feel like i should have done more, somehow. test anxiety, i guess.
of course, i also have a CAT scan with contrast dye scheduled for next month with my oncologist. this is to check to see if my breast cancer has spread to my lungs or bones. i think that i will plan on visiting my son, daughter in law, grandson, and granddaughter after this test. they live near my oncologist. spending a little time with them is another good thing for me to look forward to.
so my overall plan is to focus on the good things in my life, and let the chips, or in this case, tests, fall where they may.
Saturday, February 6, 2016
today i had to dance !
today, i have had happy feet. that just has not been the case for so very long. having had my thyroid removed from having thyroid cancer, and then having breast cancer on top of that, has been almost over the top for me. anyone with a thyroid problem, or those who do not have a thyroid, know how hard it is just to get out of bed sometimes- even on a "good day". i have been fighting my breast cancer with everything that i have. but it has sort of been like i started out in a hole, so to speak. none of my doctors or nurses told me that it would be a little more difficult to go on this unexpected breast cancer journey, when my car was already low on fuel. of course, i should have allowed for this, but i always seem to forget that i have a new normal now.
that said, today was a very good day. i am beginning to see some light at the end of the tunnel. the infection in my chest is almost gone, and my energy level has begun to pick up some. that was one of the things that i have worried about as far as going back to work. i mean, there are no nap times at work. what if i can not do it? i really will not know for sure until i try, i guess, but i have a little more hope today. i have about ten days left until i have to make a definite decision about work. and it will probably go down to the wire. this has been so difficult!
putting the breast cancer issue aside for a minute, wish i could, when you have a thyroid problem you have very, very low energy. as i have said before, thyroid supplements are nice, but whether it is a synthetic hormone or a naturally derived one, there is no substitute for a healthy, functioning thyroid. there are other very important things that thyroid patients should do. one of them, as i was reminded by one of my best friends, is to check your vitamin b-12 level. B-12 is associated with metabolism, immune function, and nerve function. if this is low, then you need to supplement- injections are probably the best way to get it. but if you are tired of needles, like me, the next best way is by sub lingual tablets. oral tablets have a very hard time being absorbed, or getting through our digestive systems. i have learned something new today about sub lingual b-12 tablets. seems they are not all equal. our body( specifically our liver) converts the cyanocobalmin form of b-12 to the active form of b-12 which is methylcobalamin. if our liver is on top of things, then this would probably not be too much of a problem. but as we age (!) things get more complicated. long story short, it would probably be more beneficial to get the methylcobalamin tablets. only problem is that the only place that i have found to get these ( yes, even walmart does not have them) is on line.
i am rather cautious when it comes to vitamin supplements. i like to go with a national brand, like nature made or nature's bounty. i want to make sure about how a product is made. is it consistent from batch to batch? how safe are the company's manufacturing practices? where is it manufactured? these things are important to me. i also need to have medicine that is free of sulfite preservatives- that is a whole other blog!
another important concern for thyroid patients, and all cancer patients really is maintaining an adequate vitamin D level. when i was first diagnosed with thyroid cancer, my vitamin D level was almost zero. vitamin D plays an important role in keeping our bones healthy, but it also has a major role in keeping our immune systems healthy. i have read some interesting studies concerning vitamin D and longevity in cancer patients. personally, i take prescription strength vitamin D. most people do fine on the over the counter types, but everyone needs to have their vitamin D levels checked at least yearly. and of course, talk with your doctor about supplementation of vitamin D. she/he can advise you if you need supplementation, and what type would be best for you.
so today, as i was working in the kitchen, i had music playing. it was a special cd that my son gave me for Christmas. some of you may be familiar with the musical group, "arrogance". they were my favorite band when i was in college at UNC-chapel hill. i am dating myself here, but i just loved their music. i found myself dancing, and out of breath, but having a good time. while i know that i can not go back to zumba (yet) i still love to dance. i was so happy to be able to shake a leg or two for a change. i feel like there is hope, and for the first time in a long time, i feel like i am going to get better.
that said, today was a very good day. i am beginning to see some light at the end of the tunnel. the infection in my chest is almost gone, and my energy level has begun to pick up some. that was one of the things that i have worried about as far as going back to work. i mean, there are no nap times at work. what if i can not do it? i really will not know for sure until i try, i guess, but i have a little more hope today. i have about ten days left until i have to make a definite decision about work. and it will probably go down to the wire. this has been so difficult!
putting the breast cancer issue aside for a minute, wish i could, when you have a thyroid problem you have very, very low energy. as i have said before, thyroid supplements are nice, but whether it is a synthetic hormone or a naturally derived one, there is no substitute for a healthy, functioning thyroid. there are other very important things that thyroid patients should do. one of them, as i was reminded by one of my best friends, is to check your vitamin b-12 level. B-12 is associated with metabolism, immune function, and nerve function. if this is low, then you need to supplement- injections are probably the best way to get it. but if you are tired of needles, like me, the next best way is by sub lingual tablets. oral tablets have a very hard time being absorbed, or getting through our digestive systems. i have learned something new today about sub lingual b-12 tablets. seems they are not all equal. our body( specifically our liver) converts the cyanocobalmin form of b-12 to the active form of b-12 which is methylcobalamin. if our liver is on top of things, then this would probably not be too much of a problem. but as we age (!) things get more complicated. long story short, it would probably be more beneficial to get the methylcobalamin tablets. only problem is that the only place that i have found to get these ( yes, even walmart does not have them) is on line.
i am rather cautious when it comes to vitamin supplements. i like to go with a national brand, like nature made or nature's bounty. i want to make sure about how a product is made. is it consistent from batch to batch? how safe are the company's manufacturing practices? where is it manufactured? these things are important to me. i also need to have medicine that is free of sulfite preservatives- that is a whole other blog!
another important concern for thyroid patients, and all cancer patients really is maintaining an adequate vitamin D level. when i was first diagnosed with thyroid cancer, my vitamin D level was almost zero. vitamin D plays an important role in keeping our bones healthy, but it also has a major role in keeping our immune systems healthy. i have read some interesting studies concerning vitamin D and longevity in cancer patients. personally, i take prescription strength vitamin D. most people do fine on the over the counter types, but everyone needs to have their vitamin D levels checked at least yearly. and of course, talk with your doctor about supplementation of vitamin D. she/he can advise you if you need supplementation, and what type would be best for you.
so today, as i was working in the kitchen, i had music playing. it was a special cd that my son gave me for Christmas. some of you may be familiar with the musical group, "arrogance". they were my favorite band when i was in college at UNC-chapel hill. i am dating myself here, but i just loved their music. i found myself dancing, and out of breath, but having a good time. while i know that i can not go back to zumba (yet) i still love to dance. i was so happy to be able to shake a leg or two for a change. i feel like there is hope, and for the first time in a long time, i feel like i am going to get better.
Thursday, December 17, 2015
an open letter to a newly diagnosed cancer patient
a very nice person from the organization," cure forward", asked if i would write an open letter to a newly diagnosed cancer patient. i had planned to write a new blog on my THYROID cancer website today, anyway. i have been hanging out on my BREAST cancer website lately, so i am overdue for a new blog here. without further ado......
dear newly diagnosed cancer patient,
you are in what i call the OMG stage of your journey. your doctor has just dropped a bomb on your tidy little world and your head is reeling. your world as you have known it has changed forever. some things will be bad, of course, as you already know. but there are many positive things that will happen going forward. for this first stage, cry, scream, howl at the moon for a day or two. life is not fair, but i have found that trying to figure out " why me?" is a waste of my precious time.
after you have adjusted to the news somewhat, and vented your frustrations a little, i advise that you get to work! research, research, research! read every credible thing that you possibly can about the type of cancer that you have. there will be many things on the internet that you should avoid, but there is good information available,too. i recommend sticking with the tried and true medical websites- mayo clinic, web MD, about.com, the american cancer society,etc. i also purchased a few books on each of my two cancers. if you do purchase some books, i would advise using amazon or some other service where you will be able to read reviews. that will save you money, as well as time. here is another piece of advice: invest in a notebook to keep all of your medical records, test results, and anything else that you can get your hands on. your tests and records belong to you! do not be afraid to ask for copies of them. i can not tell you how many times having a copy of a test or doctor's visit has come in handy for me.
decide on the type of treatment, what physicians you will be going to, and where you will receive your treatment. for my thyroid cancer, i asked my endocrinologist to recommend a good surgeon. she recommended a surgeon that was in the same town as her practice( i drive 4 hours to see her). seeing a physician in this same town was not feasible this time. i knew that my breast cancer would be more time consuming- 3 surgeries, 12 weeks of chemo,etc. so i wanted to be closer to home. i was lucky to find a hospital that was only an hour away, and was listed as an accredited breast cancer facility. i think that you should try to get the best care possible, but travel restrictions have to be considered as well.
i hope that you have good support from family and friends! that has been so very important for me. some people have told me that i have a positive attitude, or that i am brave, but this would not be possible without the help, love and support of others. practice gratitude daily. when you are grateful for even the smallest things in your life, amazing things happen. it is true that when you send out positive energy, it comes back to you. i think that it is good for your health as well.
and speaking of your health, if you have not been eating well or exercising, now is the time! be sure to have good nutrition, especially if you will be requiring chemotherapy. if you are not sure about what foods are good for you, your doctor might be able to recommend a dietitian that could help you. it is time to say goodbye to the clown ( for the most part), and hello to the fresh fruits and vegetables department of the grocery store.
if you have been exercising regularly, you might have to scale it down a bit. i had to pack up my belly scarf and zumba shoes for a while. of course, check with your physician, but a short walk several times a week will probably make you feel better . don't get me wrong, though. i loved zumba, and i fully intend to get back to shaking my booty just as soon as i am able. it may take me a while, but it is one of my personal goals.
and speaking of personal goals, make some. look ahead to the future. cancer has a way of helping you decide what is really important in your life. none of us really have the time to waste on things that just do not matter. a cancer diagnosis can help you " cut to the chase" in your life. i will say again to surround yourself with positive, helpful people. and remember to thank everyone who has helped you. i wish you luck and good health going forward. i will leave you with my favorite quote from the hobbit, and one that i have used several times in my breast cancer blog. " so comes snow after fire. and even dragons have their endings."
good luck and best wishes,
bea
dear newly diagnosed cancer patient,
you are in what i call the OMG stage of your journey. your doctor has just dropped a bomb on your tidy little world and your head is reeling. your world as you have known it has changed forever. some things will be bad, of course, as you already know. but there are many positive things that will happen going forward. for this first stage, cry, scream, howl at the moon for a day or two. life is not fair, but i have found that trying to figure out " why me?" is a waste of my precious time.
after you have adjusted to the news somewhat, and vented your frustrations a little, i advise that you get to work! research, research, research! read every credible thing that you possibly can about the type of cancer that you have. there will be many things on the internet that you should avoid, but there is good information available,too. i recommend sticking with the tried and true medical websites- mayo clinic, web MD, about.com, the american cancer society,etc. i also purchased a few books on each of my two cancers. if you do purchase some books, i would advise using amazon or some other service where you will be able to read reviews. that will save you money, as well as time. here is another piece of advice: invest in a notebook to keep all of your medical records, test results, and anything else that you can get your hands on. your tests and records belong to you! do not be afraid to ask for copies of them. i can not tell you how many times having a copy of a test or doctor's visit has come in handy for me.
decide on the type of treatment, what physicians you will be going to, and where you will receive your treatment. for my thyroid cancer, i asked my endocrinologist to recommend a good surgeon. she recommended a surgeon that was in the same town as her practice( i drive 4 hours to see her). seeing a physician in this same town was not feasible this time. i knew that my breast cancer would be more time consuming- 3 surgeries, 12 weeks of chemo,etc. so i wanted to be closer to home. i was lucky to find a hospital that was only an hour away, and was listed as an accredited breast cancer facility. i think that you should try to get the best care possible, but travel restrictions have to be considered as well.
i hope that you have good support from family and friends! that has been so very important for me. some people have told me that i have a positive attitude, or that i am brave, but this would not be possible without the help, love and support of others. practice gratitude daily. when you are grateful for even the smallest things in your life, amazing things happen. it is true that when you send out positive energy, it comes back to you. i think that it is good for your health as well.
and speaking of your health, if you have not been eating well or exercising, now is the time! be sure to have good nutrition, especially if you will be requiring chemotherapy. if you are not sure about what foods are good for you, your doctor might be able to recommend a dietitian that could help you. it is time to say goodbye to the clown ( for the most part), and hello to the fresh fruits and vegetables department of the grocery store.
if you have been exercising regularly, you might have to scale it down a bit. i had to pack up my belly scarf and zumba shoes for a while. of course, check with your physician, but a short walk several times a week will probably make you feel better . don't get me wrong, though. i loved zumba, and i fully intend to get back to shaking my booty just as soon as i am able. it may take me a while, but it is one of my personal goals.
and speaking of personal goals, make some. look ahead to the future. cancer has a way of helping you decide what is really important in your life. none of us really have the time to waste on things that just do not matter. a cancer diagnosis can help you " cut to the chase" in your life. i will say again to surround yourself with positive, helpful people. and remember to thank everyone who has helped you. i wish you luck and good health going forward. i will leave you with my favorite quote from the hobbit, and one that i have used several times in my breast cancer blog. " so comes snow after fire. and even dragons have their endings."
good luck and best wishes,
bea
Wednesday, October 14, 2015
results from the big six months checkup- that i only had once this year
i am supposed to have my thyroid cancer check up every six months, and i usually do- that is until this year. because i was diagnosed with breast cancer this year, and was " involved" with that, i missed my check up in april of this year. the fact that i did miss that check up, added to the fact that i had a second primary cancer, caused me to be very apprehensive about this check up. i had the blood work ( six tubes out of the back of my hand- but that is another story) done last week. yesterday , i had my ultrasound done first. i was a little anxious during the test because the ultrasound technician kept going over one area again and again. it brought back memories of my first ultrasound, when my thyroid nodules were discovered. keeping the mood light, you might say, i asked the technician if she was seeing any " goblins" in there. appropriate for this time of year, i thought. she said everything looked fine. i guess she was just being thorough.
next up was a bone density test. the reason for this is that keeping the TSH essentially zero so as to hopefully prevent thyroid cancer recurrence , and the fact that i am now taking an estrogen blocking drug to help prevent any breast cancer recurrence puts me at a higher risk of having osteoporosis. i have some bone loss in the " neck" area of one of my hips. it is not enough to warrant treatment, but unfortunately it is in an area that is prone to hip breakage. that said, i am not overly concerned about it. i am taking a high dose of prescription vitamin d, and my levels were good there. for some unknown reason, my calcium level was 9.3. it has never, ever been that high! i usually am in the 8 to 8.30 range. i am not taking a calcium supplement, but am trying( obviously doing a good job) to get calcium from foods. the reason that i am trying to get it through foods, is that when i was taking an oral supplement i got a kidney stone! natural (from foods) sources are best- and it does not have to be entirely dairy products. kale, for example, has more calcium than a container of milk. kale also has two times the vitamin c found in a medium sized orange, and has a healthy dose of omega 3 fatty acids, which is essential for brain health( heaven knows i need that!). one caution about kale: it is one of the worst foods for containing pesticides. if you decide to eat lots of kale, it would be best to go organic in this purchase.
the last part of my check up was a visit, or the big reveal, with my endocrinologist. i can not say enough good things about my doctor! she is compassionate, willing to discuss my treatment, compromise when necessary and she listens to me! she does not rush me out the door. she decided to reduce the dose of my levoxyl for three reasons: one, i have lost weight due to the chemotherapy, and thyroid hormone dosing is partly weight based. two, a TSH approaching zero can cause osteoporosis, as i had mentioned earlier. and three, a very low, or near zero, TSH can sometimes cause heart arrhythmia's. since it has been five years since my thyroid cancer with no recurrence, we both agreed to try a smaller dose and see how that goes. i am a bit nervous, i will admit, but i understand the reasons for reducing the dose. i am just hoping that this will not allow my thyroid cancer to return. with thyroid cancer, unlike some other cancers, a patient can have a recurrence at any time. there is no set time line for being cancer free with thyroid cancer, you have to be tested for the rest of your life and your dosage has to be finely tuned . if your thyroid hormone dosage is too low, there is a chance for recurrence, but if it is too high, you have a risk of some serious side effects. it is a slippery slope, you might say, but no thyroid hormone supplement- be it naturally or chemically sourced can compare with having an actual functioning thyroid gland. feeling well without a thyroid is not easy, as i am sure that anyone who is missing one will agree.
so, i have made my appointments for my next big check up- which will be in april of next year. some of my blood work values are still not straightened out from having had the chemotherapy. but they are improving, and i expect that the next time i have blood work done, everything hopefully will be back to normal. i am trying to rest, eat well and exercise. i have my last surgery for breast reconstruction next month. and my husband and i are going to go to the beach, which is something that i have wanted to do ever since i got the breast cancer diagnosis. i know that this is a thyroid cancer blog, but there is a link with my thyroid cancer and this second primary cancer. not all is known about the link at this time, but i am hoping that with continued research in both thyroid and breast cancer that perhaps in the near future we will have more information about the prevention of both of these cancers.
next up was a bone density test. the reason for this is that keeping the TSH essentially zero so as to hopefully prevent thyroid cancer recurrence , and the fact that i am now taking an estrogen blocking drug to help prevent any breast cancer recurrence puts me at a higher risk of having osteoporosis. i have some bone loss in the " neck" area of one of my hips. it is not enough to warrant treatment, but unfortunately it is in an area that is prone to hip breakage. that said, i am not overly concerned about it. i am taking a high dose of prescription vitamin d, and my levels were good there. for some unknown reason, my calcium level was 9.3. it has never, ever been that high! i usually am in the 8 to 8.30 range. i am not taking a calcium supplement, but am trying( obviously doing a good job) to get calcium from foods. the reason that i am trying to get it through foods, is that when i was taking an oral supplement i got a kidney stone! natural (from foods) sources are best- and it does not have to be entirely dairy products. kale, for example, has more calcium than a container of milk. kale also has two times the vitamin c found in a medium sized orange, and has a healthy dose of omega 3 fatty acids, which is essential for brain health( heaven knows i need that!). one caution about kale: it is one of the worst foods for containing pesticides. if you decide to eat lots of kale, it would be best to go organic in this purchase.
the last part of my check up was a visit, or the big reveal, with my endocrinologist. i can not say enough good things about my doctor! she is compassionate, willing to discuss my treatment, compromise when necessary and she listens to me! she does not rush me out the door. she decided to reduce the dose of my levoxyl for three reasons: one, i have lost weight due to the chemotherapy, and thyroid hormone dosing is partly weight based. two, a TSH approaching zero can cause osteoporosis, as i had mentioned earlier. and three, a very low, or near zero, TSH can sometimes cause heart arrhythmia's. since it has been five years since my thyroid cancer with no recurrence, we both agreed to try a smaller dose and see how that goes. i am a bit nervous, i will admit, but i understand the reasons for reducing the dose. i am just hoping that this will not allow my thyroid cancer to return. with thyroid cancer, unlike some other cancers, a patient can have a recurrence at any time. there is no set time line for being cancer free with thyroid cancer, you have to be tested for the rest of your life and your dosage has to be finely tuned . if your thyroid hormone dosage is too low, there is a chance for recurrence, but if it is too high, you have a risk of some serious side effects. it is a slippery slope, you might say, but no thyroid hormone supplement- be it naturally or chemically sourced can compare with having an actual functioning thyroid gland. feeling well without a thyroid is not easy, as i am sure that anyone who is missing one will agree.
so, i have made my appointments for my next big check up- which will be in april of next year. some of my blood work values are still not straightened out from having had the chemotherapy. but they are improving, and i expect that the next time i have blood work done, everything hopefully will be back to normal. i am trying to rest, eat well and exercise. i have my last surgery for breast reconstruction next month. and my husband and i are going to go to the beach, which is something that i have wanted to do ever since i got the breast cancer diagnosis. i know that this is a thyroid cancer blog, but there is a link with my thyroid cancer and this second primary cancer. not all is known about the link at this time, but i am hoping that with continued research in both thyroid and breast cancer that perhaps in the near future we will have more information about the prevention of both of these cancers.
Friday, September 18, 2015
oh how i hate hearing these words: " oh, you have thyroid cancer? aren't you lucky to have the good cancer!"
unfortunately i heard those words YET AGAIN this week. and it was from a friend of mine who is a doctor. for me, hearing this from someone in the health care field is more frustrating than hearing it from someone who is not a health care professional. perhaps i just expect more compassion and understanding from someone in health care, but that is not always the case.
i did not hear these dreaded words from my endocrinologist. she is very caring and understanding about thyroid cancer and the challenges that thyroid cancer patients face every day. i had to miss my big six month check up this past april, due to my breast cancer diagnosis. i will see my endocrinologist next month, though, and get one check up in this year. i am more nervous( than usual) about this check up, i guess. having had another primary cancer i can not help but worry about how my thyroid cancer is doing. my surgeons reassured me that the cancer cells that they found in my breasts were not thyroid cancer cells, meaning that my thyroid cancer had not spread there. i do know that if you have had thyroid cancer you have a fairly significant risk for other cancers. yet another worry for us .i would guess that these primary cancers occur , in part, by a weakened immune system. this is not fact, just my opinion.
here are some facts, though about thyroid cancer( and why it is not the good cancer). according to the american cancer society, there will be approximately 63,000 new cases of thyroid cancer in 2015. of these, 2,000 people will die of thyroid cancer in 2015. thyroid cancer is the fastest growing cancer now. not the highest number of cases( yet), but one of the few cancers to have an increase in incidence rates. thyroid cancer affects all age groups- from children to senior citizens. interestingly to me, the number of cases of women with thyroid cancer was about three times more than men. i have not read any theories as to why this is.
in a huffington post article, by anna almendrala, dr. allan ho, md, who is a medical oncologist at memorial sloan kettering cancer center is quoted as saying " recurrence can occur in about 10-30% of thyroid cancer patients, and take place 10-20 years after treatment. the excellent survival rate associated with most thyroid cancer eclipses the hardships patients go through in treatment and lifelong maintenance of the disease." i am sure if you, like me, have sweated the six month ultrasound tests, and the blood work to test for the presence of thyroglobulins, that quote hits home. also worrisome is the fact that NO HORMONE SUPPLEMENT, either " natural" or synthetic can do what that little butterfly shaped gland can do for our bodies. it is a constant struggle for most people, from what i have read, to discover what medication and dose works best for them.
if after reading this blog, and the few facts about thyroid cancer that i have reported, you can still call thyroid cancer the " good cancer", then i suggest that either you do further reading ( the online source called thyca is a good choice) or by all means, talk to a thyroid cancer survivor. we can fill you in on the daily struggles of this disease and the struggles to help people understand what thyroid cancer patients live with, basically, for the rest of our lives. no cancer should ever be called the " good cancer". as a thyroid cancer survivor AND a breast cancer survivor i can assure you that i wish i had had neither one.
i did not hear these dreaded words from my endocrinologist. she is very caring and understanding about thyroid cancer and the challenges that thyroid cancer patients face every day. i had to miss my big six month check up this past april, due to my breast cancer diagnosis. i will see my endocrinologist next month, though, and get one check up in this year. i am more nervous( than usual) about this check up, i guess. having had another primary cancer i can not help but worry about how my thyroid cancer is doing. my surgeons reassured me that the cancer cells that they found in my breasts were not thyroid cancer cells, meaning that my thyroid cancer had not spread there. i do know that if you have had thyroid cancer you have a fairly significant risk for other cancers. yet another worry for us .i would guess that these primary cancers occur , in part, by a weakened immune system. this is not fact, just my opinion.
here are some facts, though about thyroid cancer( and why it is not the good cancer). according to the american cancer society, there will be approximately 63,000 new cases of thyroid cancer in 2015. of these, 2,000 people will die of thyroid cancer in 2015. thyroid cancer is the fastest growing cancer now. not the highest number of cases( yet), but one of the few cancers to have an increase in incidence rates. thyroid cancer affects all age groups- from children to senior citizens. interestingly to me, the number of cases of women with thyroid cancer was about three times more than men. i have not read any theories as to why this is.
in a huffington post article, by anna almendrala, dr. allan ho, md, who is a medical oncologist at memorial sloan kettering cancer center is quoted as saying " recurrence can occur in about 10-30% of thyroid cancer patients, and take place 10-20 years after treatment. the excellent survival rate associated with most thyroid cancer eclipses the hardships patients go through in treatment and lifelong maintenance of the disease." i am sure if you, like me, have sweated the six month ultrasound tests, and the blood work to test for the presence of thyroglobulins, that quote hits home. also worrisome is the fact that NO HORMONE SUPPLEMENT, either " natural" or synthetic can do what that little butterfly shaped gland can do for our bodies. it is a constant struggle for most people, from what i have read, to discover what medication and dose works best for them.
if after reading this blog, and the few facts about thyroid cancer that i have reported, you can still call thyroid cancer the " good cancer", then i suggest that either you do further reading ( the online source called thyca is a good choice) or by all means, talk to a thyroid cancer survivor. we can fill you in on the daily struggles of this disease and the struggles to help people understand what thyroid cancer patients live with, basically, for the rest of our lives. no cancer should ever be called the " good cancer". as a thyroid cancer survivor AND a breast cancer survivor i can assure you that i wish i had had neither one.
Friday, September 4, 2015
Monday, April 20, 2015
" Ch-ch changes, turn and face the strange... time may change me, but i can' trace time; i watch the ripples change their size, but never leave the stream of warm impermanence, and so the days float through my eyes, but still the days seem the same. " from Changes, by david bowie
the fact that i am going through a lot of changes now, does not even seem to cover what is happening to me! so, now, faced with charting a different course for my breast cancer journey, i am forced to postpone my big six month thyroid cancer check up. i was supposed to get blood work done this week, then go down to raleigh next week for an ultrasound, bone scan and office visit with my endocrinologist. i called today to re-schedule these appointments. they are now scheduled for august- hopefully i will be able to make them. this makes me so nervous, postponing this. it is big check up! no, i am not having any problems with my neck that i know of. but i honestly thought that my thyroid cancer had reoccurred, and was now somewhere else. the reason that i was convinced of this, was the fact that i was having the two big symptoms that i had before my thyroid cancer diagnosis. those were extreme fatigue and increased anaphylaxis reactions to foods that contain sulfites. i take medicine for my sulfite allergy, and really the only good " treatment" is avoidance. but there were some foods that had previously caused reactions that i had been able to eat for a while. when i started have reactions to these foods again, i was worried.
this is another example of a point that i frequently make in my blogs. if you feel that something is wrong with your body, then it probably is. trust your " gut" feelings. this holds true for your health care providers,too. second opinions are crucial sometimes, and if you need to change doctors, do so. easier said than done, i know this. but everyone should be their own best patient advocate. it is also helpful to keep copies of your records. one example of this, is one time i was having an office visit with my endocrinologist. she needed to look at my pathology report and she could not locate it in my chart. i happened to have my " thyroid cancer" notebook with me, which contains copies of all of my tests and lab work. i said, oh, i have a copy here. so, she made a copy for my chart. you might look at the practice of keeping copies of tests and lab work as not only beneficial for yourself, but for your health care providers as well.
i am continuing on with this blog, as i said, although i am sure that most of the action will be going on at my breast cancer blog: an unexpected journey...my journey with breast cancer. a friend of mine commented on the fact that she knew someone who had thyroid cancer and breast cancer. she asked me if there is a link between the two. i have wondered about this,too. i know someone personally who has had both, and on a popular website for thyroid cancer patients, there are several patients who have had both types of cancer. is there a link? i think so, but there is no scientific evidence to prove it... YET. i hope that someone is studying this, and that someday we might have this information. if i had been aware of the possible link, i might have done a few things differently. but that is easy to say now- hind sight is always 20/20. i have always had my yearly mammograms, and that is good. i am hoping that if any thyroid cancer patient who may be reading my blog is behind on her mammograms, please catch up!
so, as i face all of the changes going on around me, i hope that i can make the best decisions that i possibly can. my decisions will be made through research, talking with other breast cancer survivors, and of course paying attention to my " gut feelings".
this is another example of a point that i frequently make in my blogs. if you feel that something is wrong with your body, then it probably is. trust your " gut" feelings. this holds true for your health care providers,too. second opinions are crucial sometimes, and if you need to change doctors, do so. easier said than done, i know this. but everyone should be their own best patient advocate. it is also helpful to keep copies of your records. one example of this, is one time i was having an office visit with my endocrinologist. she needed to look at my pathology report and she could not locate it in my chart. i happened to have my " thyroid cancer" notebook with me, which contains copies of all of my tests and lab work. i said, oh, i have a copy here. so, she made a copy for my chart. you might look at the practice of keeping copies of tests and lab work as not only beneficial for yourself, but for your health care providers as well.
i am continuing on with this blog, as i said, although i am sure that most of the action will be going on at my breast cancer blog: an unexpected journey...my journey with breast cancer. a friend of mine commented on the fact that she knew someone who had thyroid cancer and breast cancer. she asked me if there is a link between the two. i have wondered about this,too. i know someone personally who has had both, and on a popular website for thyroid cancer patients, there are several patients who have had both types of cancer. is there a link? i think so, but there is no scientific evidence to prove it... YET. i hope that someone is studying this, and that someday we might have this information. if i had been aware of the possible link, i might have done a few things differently. but that is easy to say now- hind sight is always 20/20. i have always had my yearly mammograms, and that is good. i am hoping that if any thyroid cancer patient who may be reading my blog is behind on her mammograms, please catch up!
so, as i face all of the changes going on around me, i hope that i can make the best decisions that i possibly can. my decisions will be made through research, talking with other breast cancer survivors, and of course paying attention to my " gut feelings".
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