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.