Monday, April 20, 2015

" Ch-ch changes, turn and face the strange... time may change me, but i can' trace time; i watch the ripples change their size, but never leave the stream of warm impermanence, and so the days float through my eyes, but still the days seem the same. " from Changes, by david bowie

the fact that i am going through a lot of changes now, does not even seem to cover what is happening to me! so, now, faced with charting a different course for my breast cancer journey, i am forced to postpone  my big six month thyroid cancer check up. i was supposed to get blood work done this week, then go down to raleigh next week for an ultrasound, bone scan and  office visit with my endocrinologist. i called today to re-schedule these appointments. they are now scheduled for august- hopefully i will be able to make them. this makes me so nervous, postponing this. it is big check up! no, i am not having any problems with my neck that i know of. but i honestly thought that my thyroid cancer had reoccurred, and was now somewhere else. the reason that i was convinced of this, was the fact that i was having the two big symptoms that i had before my thyroid cancer diagnosis. those were  extreme fatigue and increased anaphylaxis reactions to foods that contain sulfites. i take medicine for my sulfite allergy, and really the only good " treatment" is avoidance. but there were some foods that had previously caused reactions that i had been able to eat for a while. when i started have reactions to these foods again, i was worried.

this is another example of a point that i frequently make in my blogs. if you feel that something is wrong with your body, then it probably is. trust your " gut" feelings. this holds true for your health care providers,too. second opinions are crucial sometimes, and if you need to change doctors, do so. easier said than done, i know this. but everyone should be their own best patient advocate. it is also helpful to keep copies of your records. one example of this, is one time i was having an office visit with my endocrinologist. she needed to look at my pathology report and she could not locate it in my chart. i happened to have my " thyroid  cancer"  notebook with me,  which contains copies of all of my tests and lab work. i said, oh, i have a copy here. so, she made a copy for my chart. you might look at the practice of  keeping copies of tests and lab work as  not only beneficial for yourself, but for your health care providers as well.

i am continuing on with this blog, as i said, although i am sure that most of the action will be going on at my breast cancer blog: an unexpected journey with breast cancer. a friend of mine commented on the fact that she knew someone who had thyroid cancer and breast cancer. she asked me if there is a link between the two. i have wondered about this,too. i know someone personally who has had both, and on a popular website for thyroid cancer patients, there are several patients who have   had both types of cancer. is there a link? i think so, but there is no scientific evidence to prove it... YET.  i hope that someone is studying this, and that someday we might have this information. if i had been aware of the possible link, i might have done a few things differently. but that is easy to say now- hind sight is always 20/20. i have always had my yearly mammograms, and that is good. i am hoping that if any thyroid cancer patient who may be reading my blog is behind on her mammograms, please catch up!

so, as i face all of the changes going on around me, i hope that i can make the best decisions that i possibly can. my decisions will be made through research, talking with other breast cancer survivors, and of course paying attention to my " gut feelings".

Saturday, April 18, 2015

" the best-laid schemes o'mice an' men" - from the poem," To a mouse, on turning her up in her nest with the plough" by robert burns

in fact, i feel like a mouse who has just had her nest turned up by a plow. despite our best efforts in planning, life seems to get in our way and turn up our little, comfortable nests. my ancestors were scottish, so a poem by robert burns seems appropriate- not just for the sentiment.

my" best laid plans"  were to have my usual 6 months thyroid cancer check up starting with blood work next week. then the week following that, i would be discussing the results with my endocrinologist. i also have a bone density test and an ultrasound of my neck( to make sure there are no beasties there) scheduled on the day of my office visit.  of course, now ,i have to cancel all  of this. i am not sure when/ how i will reschedule all of these tests.

i am not having any problems with my neck area , that i am aware of, and of course my breast cancer issues have trumped my thyroid cancer. still, i am a little nervous missing the six month check up. my endocrinologist keeps me on a six month schedule because i not only had thyroid  papillary cancer, but a small section of follicular variant- which is a more aggressive type of cancer. leave it to me to be a little different.

i am going to call on monday and cancel my appointments with the endocrinologist. i called yesterday, but the office was closed. i had hoped to make at least the office visit,tests,etc, and thought that i could if i had to have just the lumpectomy. but i am sure that i will not feel like riding for 8 hours in the car to see my endocrinologist after my mastectomy(s).

yes, i am now considering asking about a double mastectomy. i have just heard the news about the actress, Rita Wilson, and her decision to have a double mastectomy. i am not sure about the details of her cancer versus mine, but she did have the same cancer as i do- which is called invasive lobular. anyone who has met me for a few minutes probably knows that i am a " worrier" kind of person. i have dense tissue and calcifications in both breasts. i would very much like to not have to worry about the other side, or worse yet, have to go through this process twice.

if you have read my breast cancer blog, you know ,that by the grace of God, i got another radiologist who saw what the other radiologist had missed. the second radiologist did another biopsy called a sterotactic biopsy, and found that some of the calcifications were indeed cancerous. so this wonderful woman( she is my hero now) saved me from having two surgeries. i would have had a  lumpectomy for the tumor mass, and then would  have to have had  a mastectomy to get the dastardly cancer cells. ( if you look up the word dastardly, here is the meaning: wicked, evil, heinous, villainous, diabolical, despicable, sordid, etc, ,, such a perfect word in this situation).

i suppose that i am going to have to wait and see if any "sarah palin", aka, rogue, thyroid cancer cells are causing any mayhem elsewhere in my body. when thyroid cancer cells travel, they take up residence in the lungs and bones. i know for a fact, i had to have a chest x-ray before surgery, that my lungs are fine. beautiful, actually, since i am a non-smoker.( my doctor showed me the x-ray).  as for my bones, i will just have to hope that they are "rogue" free, as well. there could be some beasties in my neck or lymph nodes, but hopefully not.

i have lots of important decisions to make in the next few days. i will research everything that i can, but basically i think that i will go on my "gut" feelings, as i have so far. that and my faith, family, and friends have been getting me through what is the most difficult time in my life. and of course, i will be starting on a new nest...

Wednesday, April 8, 2015

an unexpected journey........................" no, i do not want any adventure, not today!" quote from the hobbit by JRR Tolkien

some of the symptoms that i had when i was first diagnosed with thyroid cancer were extreme tiredness( and i am not talking about the " usual" tiredness, but one that is so pronounced that at times i was not sure that i had the energy to drive home from work) and my severe(anaphylatic) reaction to sulfite preservatives in food. after my surgery and treatment for thyroid cancer, and with the help of my allergist, these two symptoms improved. i was not as tired, and while my allergy to sulfites did not go away, it was much improved. i was actually able to eat SOME  foods that had once made me sick.

you can imagine my concern when these two symptoms came back! so, i called my endocrinologist about three months ago, and since my t-3 was a point down from my usual reading, we reasoned that it was my lower t3. she prescribed a 5mcg dose of cytomel to add to my levoxyl dose. i decided to take the cytomel in the afternoon - when i began to crash. as for the worsening of my sulfite allergies- well, i did not know what to think. i saw my allergist about two months before i saw my endocrinologist and began my " thyroid cancer journey" and at that time my allergist  said that she thought that i may have a malignancy somewhere in my body. but where?

my big thyroid cancer check up is at the end of this month. honestly, i thought that my thyroid cancer must have returned. the two places that thyroid cancer typically migrates to is the lungs and/or  bones. i had just had a chest x-ray last month . ( i was planning on getting a knee replacement in may and had to have a pre-surgery physical. ) my chest x-ray was perfect- no lung problems. my bones were fine, as far as my doctors and i know, so no problems there.

a couple of weeks ago, i had my  yearly mammogram and pap test. i got a call from my gynecologist's office that i needed more studies on my left breast. this has happened before- in fact three times. i have dense breasts with calcifications. i was not worried. i went to a diagnostic center for a 3-D mammogram and ultrasound. the radiologist showed me the films and said that i have a mass in my left breast. he said that it was very suspicious. ok, now i am worried.  from there , i went to see a surgeon who is experienced in breast surgery. he told me that he usually does not tell patients this before the biopsy results come in, but he was pretty sure that i have breast cancer.

i can not even begin to tell you what a shock that was! i do not have any risk factors, there is no breast cancer in my family at all, and i breast fed my children. the only "culprit" may have been the estrogen and progesterone tablets that i have taken for a few years. so, the next step was to have a  breast biopsy. i had that on monday at 10am. the biopsy was done by a radiologist who specializes in breast biopsies. he and his staff were wonderful to me. kind, professional, and they tried to make things as comfortable for me  as possible.

today i received the official results: yes, i have breast cancer. my surgeon told me that i have a cancer that is called " invasive lobular". it is a rare form ( figures) which only comprises about 10% of all breast cancers. the mass is small, he did not give me exact measurements, and he thinks that a partial mastectomy ( lumpectomy) along with six weeks ( 5 days per week) of radiation therapy will be all that i need. he is going to biopsy two lymph nodes under my left arm. if they are positive, then i will probably have  to have more surgery and possibly, chemotherapy,too. also, if he does not get clear edges, and he will not know this until after my surgery, i will have to have basically, a full mastectomy.

when i was diagnosed with thyroid cancer, i felt so alone. no one knows very  much about thyroid cancer. some people do  not even know where your thyroid gland is located! if it were not for my blog, and all of the kind people who reached out to me through it, i am not sure how well i would have managed. breast cancer seems different. although thyroid cancer is the fastest growing cancer, more women( here i mean greater numbers )  have breast cancer and there are more support groups and resources available. that does not mean that i feel any less worried or scared. i wish, though, that thyroid cancer would get the attention it deserves.

so i decided to start a new blog. no, i am not abandoning this blog, but i will have another blog about my experiences with breast cancer. it will be called: an unexpected journey.... my journey with breast cancer. i decided on the name of the blog in  the same manner that i usually get the titles for my blog entries. i woke up with the song from the hobbit movie  on my mind. it is that sweet little melody that is played whenever the hobbit gets near home. oddly enough, the same day i was in a book store and saw a journal, which i purchased, that had " the hobbit, an unexpected journey" on the cover. i said enough already, i get the message, and so that is how i came up with the title. hopefully, the hobbit people will not mind me borrowing a bit of this for my blog title.

i hope to be brave, funny, and be able to  provide information to other women who may be taking this journey,too. for every new journey there is a beginning. mine begins today.........