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.