come on over to: losingthebutterfly.@blogspot.com

i really wanted to combine my two blogs- this one and my original one- losingthebutterfly@blogspot.com. i could not figure out how to combine the two blogs into one, without losing some or most of both. so, i have moved over to my thyroid cancer one. it is called, as i said: losingthebutterfly. however, i discuss thyroid cancer, breast cancer, and skin cancer. i have had all three within the past six years. i have always thought that breast cancer and thyroid cancer are connected- and i personally know several women who have had both. i think that now, some people are noticing this "trend". i think that the skin cancer i have had was perhaps precipitated due to  my weakened immune system. i have had squamous cell on my leg, and now a basal cell on my face- which will be removed surgically, on october 10th.

i have enjoyed both blogs, but i  really can not continue to do both at the same time! i decided that since i have more followers on the thyroid cancer one, and since it was my first blog, that i will stick with it. however, as i said, i discuss breast and skin cancer issues,too. there are many really good "breast cancer only" blogs out there. even though thyroid cancer is the fastest growing cancer now, there are more cases of breast cancer. i am really hoping that the " moonshot" program that vice president biden began will help us eliminate all cancer in the very near future.

until then, i hope that those of you who read my blogs, either one, will now go on over to my thyroid/breast/skin cancer one. i will still be sharing my experiences with you, and hope that i may offer up some good or useful information for anyone who is dealing with these cancers. the challenges and issues we face as cancer patients do not stop when treatment ends. in some ways, it is more challenging to be a " survivor". learning to cope and deal with the test anxiety and continued side effects of treatment and other issues is more difficult that i could have ever imagined . i feel that there is not enough after care for cancer patients- especially if you, like me, live in a small community that may not have the resources of a larger city.

i am going to be focusing on what we survivors can do to take better care of ourselves. and be, as i have said several times, our own best patient advocates. i welcome your comments, questions, and suggestions on my blog. i also would like to thank everyone who has read, and continues to read, my blog. best wishes to everyone and you have my sincere thanks for being there to support me in my journey.

Lymphedema massage and me........the untold story( well, it will not be untold after you read this blog, and it was the best title that i could come up with. )

i will admit that i had my doubts about lymphedema massage. i really, really like my physical therapist though, and i trust her, so i thought that  i would give it a try. first,to be sure of what we were dealing with,  she measured both of my arms- from my wrists to my shoulders. the measurements on the " lymphedema side" were significantly larger, from my elbow to my shoulder, than the other side. i had already noticed the swelling, as i mentioned in a previous blog, so it really did not come as a shock.

since my other shoulder is doing pretty well  now, my PT visits will focus on a little bit more work on my neck, with the majority of time to be used for the lymphedema massage. what is lymphedema massage you might be saying at this point? as you may recall, my PT compared  lymphedema swelling to ten lanes of highway abruptly changing into two lanes. another analogy would be the ride one has if a person is traveling in a car on highway  321 from just outside of blowing rock to boone. delays, congestion, over-heated cars and brakes, just to name a few things that happen .will the company doing the road work ever finish?

so, we have this backup or congestion of the lymphatic fluid with no place to go. the channels or nodes have been either removed or damaged by surgery.  bummer.  what the physical therapist does is create a detour, you might say, by massaging the tissue and hopefully moving the fluid into other lymph nodes so it can go happily on it's way. i also have swelling in my chest and under my arm. this is  a pretty sore area, but actually the massage felt good overall. interestingly enough, our  lymph nodes follow the intestinal tract. so my massage today was in my abdomen and under my arm. the physical therapist will get to my actual arm in the next session or two.

i was told today  to watch the amount of sodium that i have in my diet. not that it contributes directly to lymphedema, but if you have swelling of any kind, you sure do not want to add onto it by retaining more fluid. also, i am doing deep breathing exercises. this surprised me, but i have been doing them for a while now, and they seem to be helping some. i think that sometimes we forget the fact that the different parts of  our body try to  work together. for the same common goal of good health and keeping us alive. i am not sure about you, but i think that this is a pretty good idea.

so, i am wearing my compression sleeve from the time i get up until i go to bed at night. i am breathing deeply, and doing my other exercises. i am hoping that this lymphedema massage will tip the scales in my favor, and i can get rid of some of this swelling. i can  certainly recommend that anyone with lymphedema make haste to see a physical therapist who is certified in lymphedema massage and treatment. the sooner a patient gets started on this, the sooner  one can get on the road to feeling better.

lymphedema - here are some facts, and some things i have learned

no one talked to me about lymphedema. NO ONE. women who have breast cancer surgery, especially mastectomy ( to refresh, i had bilateral mastectomies), can have lymphedema. there are other causes of lymphedema, but i am not going to talk about those. this is a blog about breast cancer, after all.

 i have had shoulder problems in my right shoulder and arm area. i have been going to physical therapy, and getting therapeutic massage for this problem. lymph nodes were removed from my left side- hence, the lymphedema. i was told that i should not have blood pressure taken, or blood drawn from my left arm, as these things could be harmful. since i am in health care, i knew that taking blood pressure or drawing blood could contribute to lymphedema so i was always quick to stick out my right arm when the need arose.

i have mentioned the statement that my physical therapist made  to me about " the traffic in  ten lanes of highway having to now merge into two lanes" before. that is a very descriptive way to explain the swelling ( congestion)  associated with lymphedema. just as a quick reminder, our lymphatic system is part of our immune system. the lymphatic system is involved in the removal of waste products from the body, as well as producing cells that fight off infection in our bodies. i.e, it is very important.

lymphedema can occur immediately, or even years after surgery for breast cancer. mine did not start until one year after my surgery. the swelling in my left arm ( it can occur in the legs or arms, as well as  other areas of the body) is not horrible, but it is noticeable to myself, as well as the physical therapist and the masseuse. it is uncomfortable at times. sometimes my arm gets numb, too. i was fitted for  a compression sleeve for both arms. i use the one for my "good arm" as pain relief for my shoulder. it is very important to go to a person who is a licensed compression garment fitter. when i went to get my compression sleeve, the fitter took several measurements of my arms and the correct size for me had to be ordered.

here is the sad part. lymphedema can never be cured. but, it can be managed through compression garments, exercise, physical therapy, diet, and some lifestyle changes- such as getting enough sleep and reducing stress. i sometimes think that stress is involved in just about everything that is bad for us. i suppose that it did serve a purpose at one time in the development of man kind. think, big tiger approaching- run, run, run.

i am thankful to my physical therapist and masseuse for helping me with my lymphedema. i know this is quite a "dry subject" to be discussing, but i am hoping that it may help someone who , like me, was not quite prepared for this side effect from breast cancer surgery. i have just hit the high points about lymphedema. there is some good information from reputable websites, like the mayo clinic, dr. susan love's website on breast cancer, the american cancer society website, just to name a few. as with any journey, it is good to know as much about where you are going as you possibly can. i encourage those who may be dealing with, or suspect they might have lymphedema, to be as informed as possible.

here is the " to be continued" part......

it has been a long journey. or if you are a grateful dead fan, a " long strange trip". i did see my family doctor, and he requested the CT scans, the first report from the radiologist, as well as a new, has not been seen by anyone, report from said same radiologist. when i saw my doctor, he had the FIRST report from the radiologist, but not the new and improved( i sure hoped) version. he basically told me that he really, really needed to see that last report before he could make a final judgment call on the necessity of having the MRI.

so i waited, and waited and waited some more. i know everyone is busy, and i know that i  am not the only patient any of these doctors have, but i was getting a little anxious. my family doctor's office called me late this past thursday afternoon and told me, and i quote, " the radiologist, after reviewing the previous CT scans, recommends no further evaluation or testing at this time." there was  only one word that i could think of at this point that could adequately express my feelings , and that was , to quote Madea, " H-A-L-L-E-L-U-J-E-R !!!"

so i am not saying that we should all refuse to have tests that our doctors might order. what i am saying is, that our doctors need to explain WHY we need the tests, and we need all the facts before we make a decision to have a particular test. i keep copies of all of my test results, lab work, pathology reports,etc in a note book. that has been invaluable to me, and one of the best pieces of advice that i can give anyone who has a chronic medical condition. i have said this before, but perhaps it bears repeating.  one time my endocrinologist asked me if i had a copy of a particular  pathology report that somehow did not make it into my electronic chart. of course i did! she made a copy. keeping your own records  is probably the most important part of  being a good patient advocate. it involves a little work and perseverance sometimes. but,  it really benefits everyone, especially the patient, in the long run.

i am continuing with my physical therapy, for my shoulder, arm, and neck. i am also  continuing my therapeutic massage( my favorite of the two). i have been able to reduce the pain in these areas quite a bit, and have cut down on my mobic dose ( a non-steroid, anti-inflammatory drug- sort of like motrin). my physical therapist said that i have quite a bit of scar tissue in these areas, and that has most likely been the source of my pain, and limited range of motion. the PT also said that having had 14 lymph nodes removed  ( 11 in my throat, and 3 in my chest) has played a role, the same amount of fluid is traveling down that " two lane highway", that once cruised down a ten lane one. that makes me more susceptible to infection as well. i do not worry about this, but it is useful information to have. i do try to be a little extra careful- make sure to get my flu shot, wash my hands,etc.

finally, this father's day weekend, i would like to thank my husband for being such a wonderful caregiver. he has supported me emotionally, and sometimes physically, and i will always appreciate what he has done. i  know that i can always count on him to be there for me. he has been there through the good, the bad, and certainly the ugly ( think, bald). i could not imagine doing this without him. thank you, sweetheart.

i will have to take some of my own advice now

my last blog was about my CT scan that i had on wednesday, may 25th. since we had the memorial day holiday coming up, i was pretty confident that i would not be  hearing anything until tuesday of the following week, or even later. imagine my shock and dismay when i got a phone call from the doctor's office the next day! my husband and i had one of our grandsons for the day on that thursday . we took him strawberry picking, second year in a row, and had  other fun activities planned like throwing rocks into the river( his favorite activity at our house). it was good that he was there- otherwise, i probably would have folded.

the nurse told me that the radiologist had seen a " spot on my liver" and that he wanted me to schedule an MRI so that he could check it out further. i will admit that i panicked. my oncologist  told me that breast cancer, when it spreads,usually  goes to the chest- lungs or bones. my doctor did not mention my liver. the chest and/or  bones is pretty much where thyroid cancer, when it spreads, goes to. although those darn rogue cancer  cells can go pretty much anywhere they want to. i have gotten some scary phone calls in my life- too many really. one, when my endocrinologist  called me at work and told me that i had thyroid cancer. then again, when same  doctor's nurse called me and told me that my thyroglobulin levels were elevated( that means the thyroid cancer is in the  blood stream and could possibly spread). these levels were elevated for three years, but i am happy to report that they are now down to normal.

i hastily agreed to the MRI, but then used my brain- yes i have one, even if i occasionally succumb to chemo brain. i called the oncologist's office back and requested that we just hold off on the MRI for now. i asked the nurse to repeat what she had said earlier. it seems that i have what is called a liver hemangioma. this is a NONCANCEROUS( benign) mass that is usually inherited. most people are born with this, and unless you are scanned for other beasties, you might never know that you have one. it is supposed to look like a tangle of blood vessels. there is no treatment for this, and a liver biopsy is not recommended due to possible bleeding.

i asked the imaging center to send my scan and records to my family doctor, who i have been  seeing for the past 30 years. he is the voice of reason, i might add. i have an appointment with him on monday afternoon and we can discuss the findings and his thoughts on another dose of radiation. this might be a good time to inform others that the radiation in ONE CT scan is equal to what a person would receive in 500 regular chest X-rays. now if a patient really needs a CT scan, then the risk is worth the gain, you might say. but if not, then there might be better options. i also had a near maximum dose of radioactive I-131 ( a treatment dose) after my thyroid cancer surgery. it is just a wonder that i do not glow in the dark. my son told me one time that i, when we were visiting a mineral and  gem museum, should not stand too near to the Geiger counter lest i set the thing off! he was probably not too far from wrong on that one.

so i have a plan of action. i am my own patient advocate. i am reading as much reliable material about the liver hemangioma as  i can. one thing that bothered me though,  was that  the oncologist's nurse told me to" relax", when i called her the second time. o.k., i will admit to being a little upset at first. i was not rude or demanding, however.  i wonder how she would take the news if she was the patient with my history?

so, i will know more of what i decide to do after i consult with my family doctor on monday. yes, what I DECIDE  TO DO . i take this decision seriously, and will have as much information as possible, but in the end it is all down to me. what i feel comfortable doing, while making responsible decisions for myself, as well as my family.

to be continued.............................

cancer testing.......the bane of my existence

sounds a little dramatic, but that is what i feel about cancer testing. you read about positive living, positive thinking, making the most of your life, looking for the good in every single day and i honestly try to do that. i am basically a pollyanna- type of   person at heart. along with that, though, in the back of my  mind- well not too far in the back  since i am a worrier , is the constant thought "what if i have a recurrence?"

so today i had a CT scan with contrast dye. even though the breast cancer had not spread to my lymph nodes, my oncologist said that the type that i had ( invasive lobular) could spread to my chest and bones without lymph node involvement. that is why my doctor wanted to do the CT scan- to check to see if those cancer beasties had moved to another location. the radiologist will read the scan and send the results to my oncologist. my doctor will then contact me after he has reviewed them, and we shall go from there.

i will say that the CT scan machine is much improved  since i last had one- which was several years ago. it is an open scanner, shaped  like a doughnut, so not nearly as scary as the MRI machine. i was somewhat worried about the contrast dye, though. i have a really bad sulfite allergy- if i eat or ingest anything  that contains sulfites, i have an anaphylactic reaction. for those who  do not know about sulfites, they are a group of preservatives, and go by different names. it took my allergist and me  a long time to diagnose what was making me so sick. most people do not have as severe of a reaction as i do. for the most part,some people are just "sulfite sensitive" and what that usually means is  that if a sulfite sensitive person ingests sulfites, they will have mild to moderate stomach issues.

 last week,  i called the diagnostic center, where i was to be having my scan, and asked for  the name of the dye they would be using. then, i called the company and asked them to send me a package insert so that i could check all of the ingredients. the clinical representative assured me that the Isovue( the name of the  dye they use) does not contain  any preservatives. i must have relatives in missouri, because when it comes to sulfites, i am a "show me" kind of person.

the technician started an iv and i had an infusion of the Isovue before my scan. the dye makes you feel uncomfortably warm inside, but this only lasts for a few minutes( also an improvement). i am happy to say that i have not had a reaction as yet to the dye. it takes about 48 hours the technician said for the dye to clear your system. if i was going to have an anaphylactic reaction, it would probably have happened immediately, but let's just say that i will feel truly  better about things 48 hours from now.

now i wait. i have a lot of practice waiting for cancer test results, both with my thyroid cancer and now with my breast cancer. i am going for a walk with my husband this evening and tomorrow, we are both spending time with one of our precious grandsons. life goes on- be sure that you make the best of it.

It sure would have been nice to know this earlier...or as i am always saying, you need to be your own patient advocate.

as some of you know, i have been struggling with muscle and joint pain- especially in my right arm, shoulder and back- for some time now. i blamed it on the arimidex that i am taking to block any estrogen that could be lurking around in my body. and of course, the arimidex is partly to blame. finally, i made an appointment with a physical therapist and had my first visit yesterday. i have been seeing a masseuse  and getting therapeutic massage on that area. it has been very helpful, but i could not help but think that there was even more that i could do.

i had wonderful doctors, nurses,etc, but i did not receive any "holistic care" for my breast cancer. at some major cancer centers across the country, holistic care  is the norm. unfortunately in this area, it is not. since i had to go to the doctor several times a week, and of course had the unfortunate nausea( i will spare you the rest ), to deal with, it was not feasible for me to travel so far from home. i could not have received better care for my cancer before and during, but afterwards? not so much. anyway, i finally decided that i needed some help, hence the physical therapy visit.

my husband and i have been to a wonderful physical therapist in the past- for other old people ailments. luckily, i was able to see her. i have a lot of confidence in her abilities, and she is not too far from where i live.  yesterday, i learned a whole lot about my problem and how i could improve my quality of life. she told me that physical therapy was the  standard protocol in the hospital near where she works. really?? i went to a larger hospital, but bigger is not always better, i guess. anyway, the physical therapist did an extensive evaluation and we worked on some exercises that specifically address my problems.

she put her hands right on the spots that are so tender and sore, without me having to show her. that was amazing to me! she told me that my lymphatic system is also  compromised.  even something as minor as a mosquito bite could cause swelling in my arm. i have always hated mosquitoes. the physical therapist used this analogy: imagine a ten lane highway all of a sudden changing into a four lane one. the cars get backed up, and all hell breaks loose. i had eleven lymph nodes removed with my thyroid cancer, and three with my breast cancer. i guess that i have been on the highway to hell all of this time.

the physical therapist ordered a compression sleeve for me to wear on my right arm, and one for my left arm if that one starts to act up. she said that preventive treatment for lymphedema was way better than trying to treat it after it got really cranked up. i can not change the activities that i do, well very much, anyway. ironing clothes bothers my arm, but the real kicker is work! no surprise there, i guess. the last day that i worked, we filled 240 prescriptions and i was the only pharmacist there. i had to open every darn child proof bottle to check the contents. also, i did not realize, but reaching across the counter to get the bags that hold the prescriptions is aggravating my condition.

i also have some exercises to do at home, of course. i have to see her twice a week for now. the physical therapist told me something else that surprised me. she said that my recovery time from this would be much, much longer than if i was recovering from shoulder surgery! she said, to my relief i must say, that we are going to take it slow, and no weights for now. i do have a "lymphatic massage" whatever that is , in my future. i am continuing therapeutic massage- just twice a month, as well.

i am hopeful now that i am on the right track, albeit a little late. i am hoping that perhaps a newly diagnosed breast cancer patient will read this, and make plans to see a physical therapist a lot sooner than i did. of course, i will post updates of how things are going and how i am doing.

happy mother's day

i will have to admit that i was in a much better place on this mother's day compared to last year. last year i was trying to keep a stiff upper lip as they say, knowing that  i would be facing a serious operation in just a few days. an operation, i might add, that  would change my world in unimaginable ways. i have said before that it was best, for me anyway, to deal with things one step at a time. had i contemplated the surgeries, chemotherapy, mental/physical changes to my body, etc  all at the same time, i am not sure that i could have made it. i will admit that sometimes my mind sort of shut down. that is why it is so important to take a trusted person, a good listener, with you to your important doctor's appointments. several times i would ask my husband about  certain things- procedures,etc, and he  would say, "don't you remember the doctor explaining that to you?". well, no, i guess not. perhaps i was thinking about rainbows, butterflies and puppies at the time.

one time i actually looked around to see who the doctor might be talking to. surely he was not talking to me! this happened when i had my ultrasound, after my second  mammogram - which was the first clue that something was wrong. i was in the radiologist's office, and he was pointing to the monster on the screen . surely that was not my film that  he was showing me! it must belong to someone else. even though this was a "call back" appointment, i was sure that i was fine ( i had had three  call backs in the past- all false alarms). i did not take anyone with me- that was the last time that i went alone to any major appointments. i am not sure how i made it home- it is about an hour drive from the imaging center to my house. i guess my car just knows the way home, thankfully.

i feel that i have a lot to be thankful for. while things have been difficult, they could have been so much worse. i am thankful that i had never skipped a mammogram, and i always encourage other women to have their mammograms on a regular schedule. i am forever grateful to the radiologist who decided to do the sterotactic core  biopsy instead of the lumpectomy/radiation that was first scheduled. that doctor not only saved me from having even  more surgeries , but she probably saved my life. my cancer was caught much earlier, and my prognosis is better because she cared enough to do the right thing.

having had  cancer twice, i have done a lot of soul searching. the chemotherapy that i received with my breast cancer simply knocked the stuffing out of me. i had a lot of nausea,etc, so plenty of time to lie in bed, stare at the ceiling, and really think about my life. some days i believed that i would never feel any better, but some days i had hope. i have never said " why me? why did i get cancer?" i will say that i was at very low risk for breast cancer, so for all those women  reading this and thinking that they do  not need to be concerned, i had only one risk factor- i was taking a very small dose of estrogen/progesterone. no one in my family had/has breast cancer and i breast fed both of my children. mammograms are still extremely  important, even if you are one of those women who feel you are in the clear and do not need them.

back to the soul searching. as i said, i did not ask why me, and  i did not blame God, but it did give me pause. i felt that i had my priorities pretty straight, but having this second  cancer gave me even more incentive to think about what was really important in my life. i thought about what i want to be doing with what is left of  my life. i want to be happy and i want to spend time with my family. i am working part time now, but i do not want to work the rest of my life. i want to appreciate the world around me, and live in the moment. i do not want to think about death too much ( i do a little, i will admit), but instead, i want to celebrate life. i have had a lot of support from family and friends, and i have had excellent doctors, nurses and others who have taken good care of me. for that, i am forever grateful.

so happy mother's day! i hope that everyone had a good mother's day, and was able to celebrate the day with family and/or good friends. i will be a one year breast cancer survivor on may 22nd, and i have hopes that i will get a good check up on may 25th. regardless, i am happy to still be here and am looking forward to the future.

i have a major hurdle to jump over this month...

on may 25th, i will be having a CAT scan with contrast dye to check to see if my breast cancer has spread to my bones, lungs,etc. my one year  "cancerversary" will be on May 22nd.( just to note that my 6 year cancerversary for thyroid cancer will be on may 19th ) . after enduring six years of biannual  thyroid cancer  testing, while i still get nervous, i know what to expect from those tests. i will admit to being more than a little nervous about this new test for my breast cancer. while i will admit that the unease  that i feel when i am up for thyroid cancer testing  has decreased somewhat over the years, i still suffer from test anxiety. and i thought that  test anxiety in college was bad.

some people mark their cancerversary date from the end of their chemotherapy. others use their cancer diagnosis date or when they have  completed chemotherapy or radiation . i like to observe mine on the date that  i had surgery- the date that those cancer beasties were removed from my body. to me, that is something to celebrate. i love the overwhelming confidence that all of my surgeons have had with their work. they have all told me that my cancer was gone after the surgery. in fact, my thyroid cancer surgeon was insulted that i was going to have, not my decision but the radiologist and endocrinologist's decision, the radioactive I-131 treatment  afterward. my other two surgeons did not comment on my oncologist's decision that i needed the chemotherapy. well, actually, my general surgeon said that he had no idea what my oncologist would decide to do. it seems that i am always the one having the unusual type of cancer that definitely does not go by the book.

i think that a lot of my problems have been caused by  the red hair gene. this gene  has gotten me into so much trouble over the years. for instance, more than one anesthesiologist has told me that patients with red hair have more trouble with anesthesia- i.e. nausea and vomiting. my obstetrician  told me that women with red hair have unpredictable labor and deliveries. my dermatologist told me that freckled, fair skinned redheads have more skin issues, and the list goes on. i was teased a lot about my red hair growing up. but that seemed to change in college. i was suddenly admired for my uniqueness (translation: i had more dates). joking aside, i probably do have a lot of recessive genes, and without going into a science lesson, i will just say that it does play a part in my tendency to have the weird stuff. another example of this is the fact that only about 5% of thyroid nodules are cancerous, and less than 10% of women have the type of breast cancer that i was diagnosed with ( invasive lobular). add this  to that the fact that only 2% or so of the population has red hair.there  must be a conspiracy theory in this somewhere,

so the countdown to my CAT scan  has begun. the wicked witch of the west has turned the hour glass over, and my testing time is getting closer. if i can just get by this hurdle, the doctors will leave me alone until october- i think, unless i have to have more blood work done before then. but i am never sure what my red hair gene will do next.

yes, ladies and gentlemen, we have lift off......

yesterday was my first " solo" day back at work. it made me think of something a customer said to me years ago, when i was working at cvs. it was fairly late one night and we were not terribly busy. i had been out  on the floor helping another customer, and when i came back to the pharmacy, i saw this man peeping his head behind the counter and looking all around( for me, i guessed). he said "where is the pharmacist in charge tonight?". i always wear my white coat, name tag, etc. and i just looked at him and said, " well, it is me! i am the one flying the plane tonight." thankfully, he laughed.

so whenever i am working by myself- on a week-end or a night shift- i remember that i am the "one flying the plane". my crew and i can either crash and burn( which has happened a time or two in my career ), or we can have a smooth flight and land safely. working with the public is really hard! and i have been out on medical leave for about ten months. i came into work early yesterday morning, so that i could start up the computers and be sure that i had most of the technical stuff up and running. i noticed that as i was working, i would first think, OMG how do you do this or that on the computer?! but after i took a minute to calm myself, i usually figured things out. i would like to say that i have a wonderful "crew". the technicians were so kind to me yesterday. they were very supportive and i think worked very hard to make sure things went as smoothly for me as possible. i can not thank you guys enough.

the thing that  i love best about my job is the patient contact. i really do like counseling patients about their medications, and even helping them find the best over the counter medications that will be effective, but not interfere with their particular health conditions. of course, there are times when i have to tell patients something like " no, i can not help you with that chainsaw laceration! a bandaid and neosporin will not help. you have got to go to the ER!"you might be surprised how many times something like this happens. i am not afraid to tell someone that i can not help them, and that they need to see a doctor!

i  was more than a little worried that i would be rusty from being out so long, but i think that things went as well as i could have hoped. luckily, we were not terribly busy, and things went smoothly. i will admit to having some issues at first with "chemo brain". and occasionally now, i struggle to remember the word for something, someone's name or such. but one thing that i did, and it was something that  i love to do anyway, has helped me overcome a lot of the brain fog that chemotherapy causes. that thing is reading. i have since learned that it does not matter what type of books or magazines that a person reads, it is  just very important that you read during and after chemotherapy. just as exercise is good for your body as you heal, exercise for your brain by reading is essential for good health,too.

right now, i am only working every other Sunday, and perhaps a day during the week when needed. i know that there will be difficult days ahead and i will probably get discouraged. i will admit that i am very tired today. that was another thing that i was not sure about- my energy level. could i last for a nine hour day at work ?  i have been struggling with fatigue again. hopefully it is just  that my dose of thyroid medication needs adjusting. i have my blood work for my big thyroid cancer check up next week. the week after that, i will have tests done and meet with my endocrinologist. hopefully, she will be able to help me out with the fatigue.

 having to fight breast cancer without a thyroid is a little extra tough. being a two time cancer survivor is something that i have difficulty processing sometimes. i am thankful to be here, and grateful to everyone who has helped me. never in a million years would i have ever thought that i could have major surgery, withstand chemotherapy, reconstruction, and still be standing.  i guess it makes the idea of being able to fly a plane look pretty easy.

i am to the " what now" in my breast cancer journey

it is obvious that my breast cancer diagnosis, surgery, chemotherapy and reconstruction parts of my journey are over. it has been a long, arduous time in my life. so many things have happened to me, and my entire world has been turned upside down. when i was first diagnosed i just put my life on auto pilot, so to speak. there were decisions that had to be made, and i researched everything of course. but i really put my feelings on hold, and just got on with things. oh, i cried a lot, but i tried to keep a positive attitude during this time- for my family and friends, and for myself as well. writing my blog and sharing information as to what was happening to me has helped me, and i really hope that women reading this blog have had questions answered. i hope that other breast cancer survivors have been able to read about my experiences and think about what may be best for them personally.

it almost seems as if i am entering uncharted territory at this point.  i have had plenty of information as to the medical part of my journey. i have had, and will continue to have, tests of all sorts to make sure that the cancer has not spread. except for the tests, though, i have not been able to find very much  information for the " what now" part of my journey. well meaning health professionals, family, and friends want the very best for me, but they seem to want me to return to " normal" whatever that is, and do so quickly. i have a new normal now, as the saying goes. my life will never be the same as it was before. 

i have just finished reading a very good book, called: "after breast cancer, a common sense guide for life after treatment" by hester hill schnipper. ms. schnipper is in health care, and is a breast cancer survivor herself. it was amazing to me how much of her book pertained to me! she answered a lot of my questions about the " what now" part of my journey. she also has some chapters in the book that help the husband/spouse know what a breast cancer survivor is feeling. the chapters open the door for some honest discussion on how now only the patient feels, but  what the spouse or caregiver is feeling at this point. 

i would also like to recount a story in the "after breast cancer" book  that one of the cancer survivors told to ms. schnipper .the breast cancer survivor and her family took a family vacation to peru. they were in a group of americans who were hiking up a steep trail that leads to the temples of machu picchu. at the same time, a group of peruvians were  hiking up to the temples, and were in front of the american group. the peruvians were evidently taking their time, and would stop to rest from time to time. being the impatient americans that we are, the americans  shouted" what are you doing?! we are trying to get a move on here!" to which the peruvians replied, " we are waiting. we need to give our souls a chance to catch up." i think this is marvelous! i frequently run out of energy, and am not able to keep up what was once my normal pace. i will try to remember this story, and give my soul a chance to catch up.i also find that i am taking more time to appreciate the world around me- nature especially. i have always enjoyed nature, but i am taking more time to smell the flowers, or for my soul to catch up, as the peruvians said.

i have said before in my blogs that we are all different. just as one medication or treatment does not fit  all, i think that everyone's recovery period is different. i believe  that every breast( or other) cancer survivor has different feelings about recovery and has different needs. there is no one set time table for this. if you have had cancer you are changed forever. i believe that it can be a positive thing for survivors.but be yourself, take your time in recovery, wait for " your soul to catch up." i might add to live life to the fullest. that is what i plan to do, even if i do lag behind a little and need to sit down for a while.

hi ho, hi ho, it's back to work i go.......

my appointment with the oncologist this past thursday went pretty well . i had blood work, and part of the test ( to be precise, the cbc/plt/,diff.) was  read immediately. there were 6 values that i was"abby normal" on, but my oncologist did not seem to think that it was important at this time. i was a little concerned because it was just 4 values  that were off last time. most of the ones that were off were the ones that measure platelets and red blood cells. i am not sure what this means for me  exactly,  but i will be seeing  my endocrinologist in april for my big thyroid cancer testing, so i will ask her. i get to have more blood work done then, yay, and also an ultrasound. i am  not sure about a bone density test, but my oncologist said to be sure to tell my endocrinologist that i am taking the arimidex( an estrogen blocking drug, used to treat breast cancer). this drug can cause osteoporosis. i hate to be a whiner, but i truly hate taking the arimidex. it causes me to have severe arthritis like symptoms, as well as muscle aches. it has gotten a little bit better since i started, but i am still having to deal with this. i told my oncologist that i was probably more stubborn than the drug, so i would continue taking it. the reason being, as i have said before, arimidex decreases the recurrence of breast cancer by 22%. since my odds of having a recurrence are about 30%, this tips the odds a little bit in my favor. what else can you do?

my doctor gave me  the OK to return to work this week. i faxed the paper work  to my district manager, and yesterday was my first day back at work since i started this unexpected journey. i have traveled for ten months down this road. sometimes it seems like i started yesterday, and sometimes it seems like i have been traveling forever.i was very anxious tuesday evening- so many things to worry about! would i have enough energy to get through the day? would i remember how to use the computer? would the computer programs installed since i left be difficult to learn? i work with some very nice people. everyone was very helpful and kind to me. i did leave a little early, but it was more an issue with pharmacy hours than my stamina. i will say that i was pretty exhausted when i got home!

i am just planning on working two days a month- every other sunday- at this point. i may work extra when my partners take vacation, if they need for me to ( and if i can handle it). i enjoyed seeing some of my customers yesterday,too. i got a few hugs, and some people told me that it was " good to see me back" which  was really nice.  of course. it was a somewhat, for us anyway, slow day at work. no problems to speak of, so i know it was not indicative of a normal day at work. still, i was proud of myself for being able to do my job, and for being able to complete the day without having to call 911.

i think one of the reasons that i returned to work, besides wanting to see  my coworkers  and the fact that i get to help people, is that i wanted to retire on my terms, and not on cancer's terms.i worked up until may 21st of last year. my surgery was on may 22nd. and then i was off for ten months. most of that time i was too sick to think about anything other than making it from one day to the next. but as i slowly got better , i had the time to consider what i wanted out of my life, i have a very stressful job, and i know that i can not, nor do i want, to return to work full time. it would not be the best thing for me, or anyone else. still, i have  missed  the patient contact while i have been on medical leave. i enjoy helping other people take care of themselves, and i feel that i still have a little more  to offer my customers. there are some other things that i would like to do with my life, though. i want to garden, write (something), and spend more time with my grandchildren. so, it comes down to a little work, and more play! my husband has cut his hours, though not as much as i have, so we can spend more time together. when our children were little, we worked opposite schedules so that one of us could be with them. long story short, we would like to see each other more. we want to be able to do fun things while we are still young enough to enjoy them.

so, i am heading back for a little bit of work, and hopefully, a lot more fun. i have this one life- and it is a gift- and i intend to make the very best of it!

my doctor's appointment today was a "warm up" for the one that i have on thursday.....

today i had an appointment with my plastic surgeon. i actually do not mind going to their office- well, except for that one time i had to have "in office"surgery. it is a small office, not too small though. but unlike the oncologists office, you can actually see from one end of the waiting room to the other. and another thing, i thought perhaps i had lost my mind, but whenever i go to the oncologists office i get nauseous. my husband told me that he has read that patients who have had their chemotherapy in the office, that would be me, associate the building with the nausea they experienced from the chemotherapy. that makes me feel somewhat like a lab rat, though. you know the ones who scream or something when they hear the bell? perhaps i am just a participant in some nefarious lab experiment?

i thought that today would be my last day at the plastic surgeon's office, and that he would release me. of course, things never go quite as you might like, but it was not a bad appointment. i made some cupcakes for everyone last night, and i brought those along. everyone in the surgeon's office conducts themselves in a professional manner, but the office has a comforting family feel to it. i usually bring my doctor and his staff some  cookies, muffins, or something homemade. i like to cook, and this way i can give most of what i cook away and i do not end up eating it!

the outcome today was that i have to return in two months. that one trouble maker side is still not completely healed up. the surgeon said that he should be able to release me in two months. maybe my doctor and his staff just want some more cupcakes? at any rate, at least i am making some progress and not going backwards. i still have some lifting restrictions, but basically he said to do what i want, but if it hurts stop. sage advice for anyone.

i am already getting nervous about thursday's appointment with the oncologist. they will do blood work, and thanks to state of the art equipment, they will have the results in just a few minutes. that really  amazes me. always having to wait on results from blood work from my family doctor, or even my endocrinologist in raleigh, makes me wish every doctor had this technology. i also have an office visit with my oncologist after my blood work has been finished. he will schedule the appointment for my CAT scan, which will be done next month. i had a short reprieve from doctors, needles,etc. but looks like we are all back in business for a while. my big thyroid cancer check up comes up next month,too. i really can not have any more cancers! this is getting to be too much for me to keep up with.

my husband and i have planned a trip on thursday, just as soon as we can escape from the oncologists office. we are going to nashville ( i have never been) to see john prine and iris dement. we would like  to tour the grand ole opry while we are there.this is part of an early celebration marking our 39th wedding anniversary. we happen to be working this year on the actual day of our anniversary, which will be on april 2nd. last year on that day, we both were in the general surgeon's office and i received the "official " news that i had breast cancer. i am hoping for better news this year, and while i will not be going to the beach, i am heading out of town. and that is a beautiful thing.

this time last year, it truly was "march madness" for me

it is hard to believe that it has been almost a year since i began my unexpected journey with breast cancer. it began in mid- march of last year, with a routine, or so i thought, yearly, mammogram. i remember getting the call from my doctor's office . one of the nurses said that they wanted to send me to an imaging center that did the newer 3d mammograms for a closer look. i have been "called back" before, several times in fact, so i was not worried. i went by myself, as i did not think that  it was serious enough to take anyone along with me.

at the imaging center, they did the 3d mammogram, then the doctor requested an ultrasound. o.k., this was something new, but i was not overly worried at the time. they did the ultrasound, then the technician gave me a long stemmed  rose.( at this particular imaging center, they give all of their female patients a rose at the conclusion of your test. it is a nice touch.). only this time, instead of being told it was nothing, i was asked to come into the radiologists office. i remember that i was holding onto the rose so tightly that the thorns were digging into my hands. the radiologist's office was dark, and he had my pictures up on his computer screen, i remember that it was cold in his office, and it was very quiet. it seemed as if the technician, radiologist, as well as myself were all  holding our breaths.  i remember placing the rose down quietly on his desk, while i looked at my pictures. surely these films belonged to someone else? although i am not a radiologist, i clearly saw the monster in my left breast.

i have used a phrase from the hobbit several times  in my blogs  about "even dragons have their endings". i can still see  the image of my tumors- i did not know at the time, but there were three of them. and combined, they  really did look like a dragon. that image is forever burned in my memory. somehow i made the drive home, it took an hour to get there, and during that time i was sort of driving on auto pilot. good thing my car knows the way home, i guess.

on that day, my own march madness,  my life changed forever. i somehow continued to work, to be a mom, to be a wife,a grandmother, a sister, a friend. i made it  through two biopsies, several appointments with surgeons, other doctor visits, until finally the big day arrived. on may 22nd, i had my bilateral mastectomies. it has been a wild ride, a bumpy road, and there have been  several things that have gone wrong. there are, however, several things that have turned out well, for which i am extremely grateful. i always want to be sure to thank everyone- my family, friends,and  excellent health care professionals who have helped me along the way. my faith has helped me through some pretty rough times, and i have done some serious soul searching along the way.

on march 10th, i have a follow up visit with the oncologist. they will do a lot of blood work, and i will have an office visit with the doctor to go over the results. later on that day, i also will  have another visit with my plastic surgeon. i am praying for good news from both doctors. i am hoping that i will have a calmer  spring this year. i am ready to begin a new journey. one that will be filled with happiness, good health, and the appreciation of what is really important in my life.

well, it took me long enough, but i finally made a decision about returning to work.....

the decision of " if i should return to work or not"  has been a difficult one. during most of my surgeries, chemotherapy, doctor's appointments,etc. i was just too sick to think about if i could return to work or not. honestly, i was not sure, and i am still not to some degree, if i could be a productive part of my team. and those guys are my team! they have been so kind to me- offered support, cards, gifts, and encouragement. i am not sure what i would have done without them! so, i do not want to let anyone down. that said, i have had  to make a decision based on what is best for my family and myself.

i am sure most people know, but working in pharmacy is a stressful job for everyone involved. i have not thought for one minute that this stress actually caused my cancer, but let's just say that stress gave my cancer a head start in the race. it has taken me so very long to get to the point where i could actually see myself working an entire day without having to go home. i decided to work very part time at first, and see how that goes. i see my oncologist on march 10th, and he will do blood work, and an office visit. we will also schedule a CAT scan for april to see if the cancer has come back or spread to any other location. i will need for my oncologist to fill out a form saying that i am capable of returning to work. i have no reason to think that he will not do this. that said, i guess that i will not know for absolute certain until i see him.

so, if the doctor gives me the green light to return to work, i will spend monday, march 14th, doing CBL's. that is the bane of every walmart employee's existence. those darn computer based learning programs are on going, and i have missed ten months worth of them! then, on march 16th- a wednesday, i will actually work an entire shift. my hours are 10 to 5. i know that sounds easy, but it makes me a little nervous. after being out for so long, i feel like going back for a full shift seems a little like having to merge onto the interstate into traffic that  is going 70 miles an hour.

starting the first of april , i will begin working every other Sunday. i will be the only pharmacist ( that is the way it is on the weekends), but the pace is slower, somewhat, and the doctor's offices are closed. of course, the ER and convenient care will be open, but still, it should be an easier day. that is what i keep telling myself, anyway.

so, i have a little less than a month to regain more of my strength. i will have to wean myself off afternoon naps, lol. and there is the problem of the arthritis symptoms from the arimidex. hopefully i can discover some additional ways of dealing with this side effect. about 15% of all women who take this estrogen blocker have the arthritis. i already have   some arthritis  in one knee anyway, but this affects the entire body. i may have thrown these  statistics out before, but 30% of all women who have had breast cancer will have a recurrence. the arimidex has been shown to reduce the recurrences by  22% for postmenopausal ( that is an important fact to note) women. this is compared to the drug tamoxifen- which is the drug of choice for pre-menopausal women.

despite all of my research, and i have done a fair share of that, it is still a gamble. which drug to use, should i return to work, will there be enough stress to cause the cancer to return,and so on. i am trying to navigate my way on this unexpected journey of mine. and i am just doing the best that i can.

my heart goes out to the women known as the " taxotears"

when i was getting my chemotherapy, i was NOT informed  that permanent hair loss was a possible side effect of the drug taxotere. taxotere is considered a sort of " gold standard" in the treatment of breast cancer. as i have mentioned before, my oncologist stopped my taxotere ( bless him) because of neuropathy in some of my toes and fingers. this happened half way through my treatments. although he did change that particular drug to adriamycin, which is affectionately known as the " red devil", it does not cause, at least to my knowledge, permanent hair loss. i might mention that three of my toes are still numb, and probably will always be that way. at least the feeling came back in my fingers. it would be hard to type this blog if they were still numb (!).

 a group of courageous, persistent women known as the "taxotears" brought forth a lawsuit to force the manufacturer of the drug taxotere to make the side effect of permanent hair loss known to chemotherapy patients. this was only just implemented in november of 2015.

about ten days after my first round of chemotherapy, my hair started coming out. my husband gave me a buzz cut, and i thought that would be good enough. but after my second round of the taxotere, i was shocked to find very tiny hairs- so many of them, in my little sleep cap beanie. long story short( i think that there is a pun here ), i ended up as bald as a bald eagle- no, that is not quite right- they have feathers. as bald as an eight ball, as smooth as a bowling ball, as slick as an ice cube, well, you get the picture.

some people might think that this would be the least of my problems at this point. but, having lost both breasts and being bald on top of that. well, let's just say my self image had just taken a major hit. it took quite a while, i think, for my hair to start growing back. i believe that  my husband was getting worried,too, although he always tries to be encouraging. it has been about five months since my last chemotherapy treatment. my hair has come back super curly, but is still super short. sometimes i get scared and tell my husband that perhaps it has stopped growing? he always tells me, " oh, sweetie, it is growing back! all the curls just make it look shorter than it really is." he is a really sweet man.

for a newly diagnosed breast cancer patient, taxotere will most certainly be the drug of first choice. some women have reported  some success in keeping their hair using  a " cold cap". these are expensive, and do not always work. since women do lose their hair with the taxotere,  ( i also had cytoxan with every chemotherapy treatment, and this can cause temporary  hair loss)  how do you know if the hair loss will be permanent? good question. i am not sure if there is, or will be, an answer to this. it does make the " cold cap" product seem a bit more desirable, though.

would i have done anything differently with my treatment had i had the correct side effect information about the taxotere? i am not sure. i suppose that i should be grateful that the neuropathy stopped my treatment with this particular drug. even though my hair is more like the turtle than the hare in the hair growing race, at least i have a little. for that, i am thankful. slow and steady wins the race, i guess.

 

i am moving into uncharted territory here...

the good news is that my chest infection is improving! i saw the plastic surgeon on thursday, and he said that we could wait six weeks before my next check up. that is the longest time that i have gone without being in his office! i have gotten to know those people- nursing staff, office staff, the doctor- so well, that i now bring home baked cookies, muffins, apples from the orchard,etc. whenever i go. it is a small office, and the nurses always give me a hug when i come in for my appointments. not that i enjoy the visits, necessarily- there have been some pretty intense, scary times. especially the time that my surgeon  re-cut and re-stitched the place on my chest. he just injected some topical anesthetic into my chest  and told me " bea, you had better look the other way."  i usually look when i have things done, but this was one time that i was happy to look away.

i have blood work coming up this week. and i have an appointment with the oncologist next month, and more blood work. i also have lots and lots of testing coming up in april. i hope that i will have enough blood to satisfy all of  those hungry doctors! i dread the appointment with the oncologist next month. to be honest, every time that i go to the oncologist's office,  i get sick on my stomach. i thought that i was probably just going crazy, but my husband told me that he has read that  many patients experience nausea at the oncologist's office if they have had chemotherapy there. hearing this makes me feel a little bit better, even though i do feel a little like a participant in a  weird experiment of some kind. you know, the ones where the rat does a back flip for some cheese or something?

tests aside, i am trying to move forward with my life. things have certainly changed. my hair has started to grow back a little. i told my husband that my hair reminds me of a q-tip at this point. it is extremely curly, and if i even get near the hair dryer, it poofs way up, reminding me of a "poodle do". i have had to adjust to the way i fix my hair, but also i am trying to adjust to the way i look. and i am not talking about just my hair.

i look in the mirror and i see someone that is unfamiliar to me. i would like to say that i am still the same person on the inside, and i mostly am, but that has changed some as well. i am not saying that it is all bad.  this is my second time with the" big C", but this time, things have been more intense, frightening, life changing. i have a better idea of what things are important, what things are not important, and i am overwhelmed with a sense of gratitude for all the good things in life.

the big thing that i am now working on, now that the task of just  surviving the surgery, chemotherapy,etc, is coming to an end, is to answer the question, "where do i go from here?". i have been struggling with the question of if i should return to work or not. i have been in contact with my district manager, and i have been as honest with him as i could be. some days, i felt as though i could go back to work and do a decent job, and some days i just could not imagine being able to hold up for a 10 hour day. i do miss most of my co-workers and customers, but the stress at my store( the busiest one in our district) is daunting. is this the best thing for me and my family? i am not sure at this point. my medical leave of absence ends on march 18th. i will have to make a final decision by that date. i am pretty sure that if i feel able to come back to work, i will only work a few hours a month. this is the scenario that i am leaning towards, but i am not 100% sure at this point.

uncharted territory, indeed. i have been a pharmacist for almost 40 years. i have seen things change so much from the time that i started working. i have kept up, though, and feel  that up to this point anyway, i have done a good job. there are a few things - different things, dreams you might say, that i would like to do with my life. as a good friend of mine pointed out, our lives do come with an expiration date. i feel somewhat like the little hobbit on his unexpected journey. i have slayed the dragon ( hopefully), and now i am on a journey back home. wherever that may take me.

here we go again.... oh, wait, i think that i have used this title before.

i try my best not to complain ( too much, anyway). everyone who has cancer and treatment for cancer will have complications, unusual side effects, things that come up,etc. i am just a little tired of my chest getting infected ( again). i have a great surgeon, so i do not blame him for any of this. i did overdo it right at first, the first time that things got infected. that was part of it. i told the breast care nurse at frye, " you know how you gave me that lecture about not just sitting back and letting people do things for me? well, you should have given me the " do not overdo it lecture instead." she replied that she thought for sure she had given me the latter.

i have been blissfully unaware of how chemotherapy would really affect me, how the surgery would affect me, and what my new normal life would be going forward. i thought that i had researched and prepared for this pretty well. i guess that it is impossible to know these things until you experience them for yourself.( i do not recommend this, by the way). one of the main reasons that i decided to write this blog was so that i could share information with other breast cancer patients. my thyroid cancer blog has been going on for five years now. i will admit that i have neglected it somewhat because i have been busy with this one. thyroid cancer is not as common as breast cancer, though it is the fastest growing cancer now. there is a lot of misinformation about thyroid cancer. being hailed by some as the " good cancer" being at the top of the misinformation list.

i have said before that i think that there is a link between having thyroid cancer  and breast cancer. i know of a few people who have both.( that would include me in that membership )  it may just be the fact that 30% of thyroid cancer patients will get another primary cancer in their lifetime. it may be something else. i sure wish that someone would do some research into this link, though. all that i can say now to you thyroid cancer patients out there, is to  make SURE that you have your scheduled mammograms. do not skip a year or anything stupid like that. thyroid cancer may sometimes be a slow growing cancer, not always by the way, but breast cancer is usually an " off to the races" type of cancer. in other words, time is of the essence.

i continue to hope that this latest infection will resolve without more surgery. i am doing the hydrogen peroxide cleaning and application of bactroban ointment twice a day thing again. i see the surgeon next week, but while it has not gotten any worse, it has not yet improved. i wish that i could offer up some advice on how patients could avoid this. the only thing that i can add is for patients not to pick up anything heavy during those first crucial weeks after surgery. i am not sure that not doing any heavy lifting will prevent a chest infection, but i still recommend that all breast cancer patients think before they pick up something. simple to say, but if it is heavy, put it down!

another thing that i wanted to mention is the arimidex ( estrogen blocking drug) that some  breast cancer patients will be taking after chemotherapy is completed. i have been on this drug now since the end of my chemotherapy, from about october on, and i am experiencing severe arthritic symptoms. stopping this drug is not really an option for me. there are a few other choices, but in postmenopausal (that would be me) women, the arimidex has been proven to prevent recurrences about 22% more than the other medicines. since i have read that women who have had breast cancer have a 30% chance of a recurrences, i have decided to stay on this medication. the bad news is that while the time period to stay on these estrogen blocking drugs used to be five years, new studies have recommended that women stay on the drugs for TEN (yes, ten) years.

i called my physician and asked what i needed to do to manage my arthritis symptoms. he told me that i could take an anti-inflammatory drug- one that would be a little easier on my stomach than the over the counter ibuprofen i had been taking. i suppose that i could have asked for some heavy duty pain medicine, but i do not want to take anything stronger for several reasons, one being the fact  that hydrocodone,etc, makes me sick. of course, with an anti-inflammatory drug, prescription or over the counter, you run the risk of stomach bleeding. i will use my "scale analogy"  here. when i was counseling patients in the pharmacy about their medication risks, i told them that you have to weigh the benefits of a particular drug versus the side effects. as a patient, and your own best advocate, you should gather the most reliable   information that you can and make the best choice for you. so that is what i have done. i will keep everyone posted on how this is working out for me.

as for my latest bout with a chest infection, i will know more, i guess, on thursday. thank you again for reading my blog and i hope that i have provided some useful information for those dealing with breast cancer or thyroid cancer.

how i survived chemotherapy, or , to put it another way, thank God for music

i have mentioned before how much music has always meant  to me. how i grew up surrounded by the music of my dad and uncle. i have never told this story- my own  music story- until now. when i was very little, about six years old or so, my great uncle let me borrow a child sized violin. it was the most beautiful thing that i had ever seen. smooth, rich wood and a lovely sound. i am not sure how it was determined that i should take violin lessons. my great uncle and his family all played a musical instrument of some sort- the violin, cello, piano, to name a few. i suppose the fact that i was always singing to the top of my voice, sometimes even in my sleep, gave  someone the idea  that music lessons would be in order.

my violin teacher was a very stern and highly emotional person. she weighed about 90 pounds soaking wet, and  she had a voice that sounded like nails on a chalk board. i should add that she was not afraid to use her voice- either to correct our form or technique or whatever else her students needed to improve upon. when we would arrive for our lessons, her husband would head out to mow the grass ( he must have had the most manicured lawn in town, i realize now). my violin teacher swore that her husband was deaf, but i never thought so. he would wink at us and tell us that while his wife thought she was giving us  violin lessons, we were actually playing " the fiddle". she gave several children lessons each week. we each had our own designated  day of the week  for a private lesson, with ensemble occurring at the end of each week.  another one of her "endearing" traits was her habit of banging her head on the piano when our performances were less than stellar. she must have had numerous headaches.

one story that i recounted to my own  children was the day that a man, woman and their two children showed up at my violin teacher's house to observe a lesson. and i was the student that day. after talking over the particulars of the lessons, cost, etc with the parents, she told everyone that i would play a piece for them. i was not prepared, and frankly, i was extremely nervous. i can remember how scared i was- sweating bullets to say the least. so i played. and after they had gone, i was sure that some head banging would be forthcoming . instead she just looked at me and asked me very quietly, when i had learned to play with vibrato. i mumbled something, but in truth, i was just so nervous that my hands were shaking, thus the vibrato. and by the way, those two children ended up in our group.

when i grew a little older, i had to put my child sized violin aside, and trade it in for a grown up violin. it was never the same after that. my new violin was not beautiful, nor did it have a very good sound. because of this, i stopped my lessons, and began to play the flute. while i have many good memories of playing in the high school band, my first love will always be the violin. and even though my violin teacher was quite the character, she really cared about her students. she always gave us bags of popcorn, or homemade taffy. we had our lessons right after school, and she knew that we would be hungry.

you must be wondering how this  relates to me getting through chemotherapy. i was alone a lot- my husband was working full time, and we live in a pretty remote place. there were several days during my chemotherapy that i could not get out of bed. i would get the famous cold washcloth for my head and count down the hours, minutes until my husband came home. to take my mind off things, i listened to pandora- my george gershwin station. the music took my mind off how sick i was feeling and transported me to a happy place, a safe place. there are many things that cancer patients can do to make things easier. being out in nature, taking a walk, reading,and so on. for me, music was the key. and to think it all started with a beautiful child sized violin.

probably the best piece of advice ever is " trust your gut", or in my case,my boob.

it is such a simple piece of advice. trust your gut. or as dr. spock used to say " trust yourself. you know more than you think." i read his quote in a baby care book that i received after my first child was born. i have thought back to this advice many times, and have tried to follow my feelings. of course, many times we second guess ourselves. we over think, and make something more complicated than it needs to be.

i have discussed this in my earlier blogs, but i think that this example bears repeating. after my 3d mammogram and ultrasound, the radiologist( i will call him radiologist #1) took me into his office and showed me the pictures of my left breast. now, i certainly am not an expert, but even i knew,before he even pointed it out to me, that what we were looking at was not normal. it looked like an alien life form- irregular shaped, shaded,  with strange looking" fingers" that looked like they were reaching for something. there was also an area of suspicious looking cells in another area of tissue. he said that of course i would need a biopsy.

so, radiologist #2, who did the biopsy and was recommended by by gynecologist, also saw this same suspicious looking area. all that he said was, " wow that looks weird. hope the biopsy was not too painful for you, and have a nice day." by this time, i knew something was really wrong but who was i to question two other doctors? i went on with the surgeons plan to just get a lumpectomy and radiation afterwards.

enter radiologist #3. could i have a HUGE round of applause here ? i liked her right off the bat, as they say. i was getting prepped for the lumpectomy , and she took one look at my x-rays and said, " hold on. i do not like the look of this area over here." all that she was supposed to do was look at my x-rays, then send me over to nuclear medicine for the placement of the dye marking the sentinentel nodes. i would also like to add that this doctor did not usually work at the hospital where i was being treated. she was just filling in that day. she told me that she "treated patients like she would treat members of her own family." and that she " had to be able to sleep at night" after she made her decisions on patient care. by this time, the operating room and surgeon were ready for me. nuclear  medicine was having heart palpitations over the delay, i think, but she calmly told me that with my permission, she would like to cancel the surgery and do a sterotatic biopsy on the " weird" looking area. i had only just met this doctor, but i had complete trust in her. and to be honest, i had already worried about the area in question.

i have always liked my breasts. they nourished my children. they made me feel feminine. i guess a part of me was hoping to get by with just the lumpectomy, but my gut was telling me that this was not the right decision. after all, my breasts were not worth dying for. so, i agreed with radiologist #3. we probably made several people mad that day, but in the end it was the absolute correct thing to do. the weird area was indeed a separate cancer, and had i just had the lumpectomy and radiation, at some point on down the line,  i would have had to return for the bilateral mastectomies. and what is most important, the cancer might have had more time to  spread to other areas of my body.

i have thought a great deal about radiologist #3. i actually called the hospital and got her name so that i could send her a note to express my gratitude. even better, when she heard that i was asking about her, she called me at home to check on me. i told her how grateful  i was for what she did for me. i told her that saying "thank you" hardly seemed like enough. i hope  that my experience encouraged  her to continue with  her most excellent way of practicing medicine.

in my gut, or boob, i knew something was wrong. i was so very fortunate to have someone who also noticed that something was wrong, and followed her gut to check things out further. care for cancer seems to be advancing daily. i know that i have received much better care than i would have gotten even 5 years ago. and, cancer care in the future will be superior to the care available now. but one thing remains constant. we need to follow our feelings about the care that we are receiving, ask the right questions, get the right answers, and at least know that we have done every possible thing that we can do to get well.

if you are reading my blog,i would like for you to  remember what dr. spock said all those years ago. " trust yourself. you know more than you think." it is your body- you alone know if something is not right. i said that.

when you have cancer, you have to keep those scales balanced.....

i have always looked at having cancer, and being a two time survivor, as a balancing act. it is sort of like balancing a scale- you know, the ones with a little pan on each side? one pan is full of puppy dogs, butterflies and rainbows. the other pan is full of the serious side of things. i do not think that either side should out weigh the other. if you are consumed by the serious side of things- sometimes the "gloom and doom", then you will suffer , as will your family and friends. on the other hand, if you are a person who is basically in denial, then i feel that one of these days, your world will come crashing down. when you finally accept what is going on, it could be devastating.

i personally like to research everything, keep records, and ask enough questions to slightly aggravate my doctors and other health professionals. i try to see the bright side, but in a realistic way. there are always things  to be thankful for of course .generally,  i try to be upbeat and positive, but aware of what is happening to me. great health care providers, family and friends are all wonderful and necessary to get through any chronic health care issue. but basically, it all comes down to you- the patient. we all need to be our own best patient advocate, if possible.

i have some testing coming up in march, and a LOT of testing coming up in april. between now and then, i am hoping to do some things to address my general well being and mental health. for the past 7 months, i have been focusing all of  my attention and energy on the treatment side of things- surgery, chemotherapy, more surgery,etc. for one thing , i see the need to add some gentle exercise to my life. i have chosen tai chi as a starting point. i really  wish it could be zumba- i sure do miss it! but i know that my body is not quite ready for that level of activity. i do think that the 5 years  i spent doing zumba helped my body withstand the demands of the surgeries and chemotherapy.

my husband and i are planning on having a vegetable garden this year. we tried to have one in years past, but with  both of us working full time it just did not work out. i love living out here in the "boonies" as some people call it . the peace that only nature can bring really soothes the soul. we also want to keep bees, if we can figure it all out! my husband planted a "healing garden" for me both times that i was recovering from cancer surgery. he loves the flower gardening part of things, so we will be working on that as well.

as far as my mental health goes, that is somewhat of a challenge. with a breast cancer diagnosis, naturally  i had to stop taking my estrogen" cold turkey". that along with the changes in my body, as well as having a second primary cancer within the span of five years , has  been difficult to deal with at times. i used to hardly ever cry, but suddenly i find myself crying at the drop of a hat, as well as every time i happen to see  a hallmark commercial.(!)  yes, i could take antidepressants, and while  i do not judge others who do, it is just not for me. i am hoping that a lifestyle change will tip my scales over onto the puppy dog side of life . i have been focusing too much of my energy on the serious side and need to get my scale balanced again.

I can see clearly now..... or i will be able to when my new glasses get here.

this is another FYI blog post. i promise i am not complaining, well , not too much anyway. i went to the opthalmologist  yesterday to have my eyes checked. i have been having some blurry vision, and i have  had to go up a couple sizes in my " readers" lately for computer work and work in general. i was over-due for an eye exam- i will admit it. i thought to myself, " what could happen? it is just an eye exam." i should never, ever say this to myself.

the last time that i went to the opthalmologist , my vision was 20/20- no problems with my eye health. yesterday, my vision was 20/70! the doctor said that he was somewhat concerned about me driving with what he saw.  i will admit to having difficulty driving at night- i have always had trouble with that, but i really do not think that my day time driving is too  dangerous.(!)  anyway, he also said that i have some cataracts! i was shocked, to say the least. the cataracts are not bad enough to require surgery at this time, thank goodness. i told the doctor that i have noticed that my vision has gotten a lot worse since i had my chemotherapy. he said that the chemotherapy  certainly could have affected my vision. also, in the cocktail of the 5 pre-med drugs i received before each treatment was the drug, dexamethasone. it is a powerful steroid drug. i did ask the oncologist if he could skip that one, but he said absolutely not. it prevents a severe allergic reaction to the chemotherapy drugs. one of the side effects of the dexamethasone, though, is the formation of cataracts. well, la dee da.

the point that i would like to make here, is that chemotherapy affects the entire body. it is important to address any changes that you might see( no pun intended), or notice in your overall health. i think eye exams should me mandatory after chemotherapy. i would have liked to have a more integrated health care for my cancer treatment. i have had wonderful doctors, and other health care professionals, but i think that it would have been very helpful to have had other types of care. for example, help with nutrition, counseling, relaxation techniques, exercise suggestions,etc.

it has been  difficult to be " cut loose" after i have had  so many major things done to my body. where do i go from here? what is it going to be like for me in the future? what is my new normal and how is going to affect me and my family ?  i am still grappling with these issues, as i am sure that many others are as well. i frankly have been surprised that there is not more supportive care given to cancer patients. being a health professional myself, i have a pretty good idea about some things, but i feel that more can be done to make cancer care more holistic. i know that in larger cities there are cancer centers which better address these issues. of course, it is not always feasible for patients to travel long distances. that is one reason that i chose to stay here, close to home, for my care. i knew that with several surgeries, and 12 weeks of chemotherapy, i would not want to travel very far.  as i have said before , i feel that i have received excellent care in most areas. i suppose that the holistic approach to cancer care will soon be the norm in smaller health care facilities. but for now, there is a lot of catching up that needs to be done.

so, getting back to my eye exam. my glasses have been ordered- bifocals, and i hope that i can get used to them. i did order purple frames, though, in a sort of act of defiance. those that know me will understand. i should get my glasses in two weeks or so, the doctor said. i will have another eye exam next year to check on my vision and the cataracts. i swear, the doctor said we would just " keep an eye on things."it seems that  i am not the only queen of one liners.