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.