an open letter to a newly diagnosed cancer patient

a very nice person from the organization," cure forward", asked if i would write an open letter to a newly diagnosed cancer patient. i had planned to write a new blog on my THYROID cancer website  today, anyway. i have been hanging out on my BREAST cancer website lately, so i am overdue for a new blog here. without further ado......


dear newly diagnosed cancer patient,

you are in what  i call the OMG stage of your journey. your doctor has just dropped a bomb on your tidy little world and your head is reeling. your world as you have known it has changed forever. some things will be bad, of course, as you already know. but there are many positive things that will happen going forward. for this first stage, cry, scream, howl at the moon for a day or two. life is not fair, but i have found that trying to figure out " why me?" is  a waste of my precious time.

after you have adjusted to the news somewhat, and vented your frustrations a little, i advise that you get to work! research, research, research! read every credible thing that you possibly can about the type of cancer that you have. there will be many things on the internet that you should avoid, but there is good information available,too. i recommend sticking with the tried and true medical websites- mayo clinic, web MD, about.com,  the american cancer society,etc. i also purchased a few books on each of my two cancers. if you do purchase some books, i would advise using amazon or some other service where you will be able to read reviews. that will save you money, as well as time. here is another piece of advice: invest in a notebook to keep all of your medical records, test results, and anything else that you can get your hands on. your tests and records belong to you! do not be afraid to ask for copies of them. i can not tell you how many times having a copy of a test or doctor's visit  has come in handy for me.

decide on the type of treatment, what physicians you will be going to, and where you will receive your treatment. for my thyroid cancer, i asked my endocrinologist to recommend a good surgeon. she recommended a surgeon that was in the same town as her practice( i drive 4 hours to see her). seeing a physician in this same town was not feasible this time. i knew that my breast cancer would be more time consuming- 3 surgeries, 12 weeks of chemo,etc. so i wanted to be closer to home. i was lucky to find a hospital that was only an hour away, and was listed as an accredited breast cancer facility. i think that you should try to get the best care possible, but travel restrictions have to be considered as well.

i hope that you have good support from family and friends! that has been so very important for me. some people have told me that i have a positive attitude, or that i am brave, but this would not be possible without the help, love and support of others. practice gratitude daily. when you are grateful for even the smallest things in your life, amazing things happen. it is true that when you send out positive energy, it comes back to you. i think that it is good for your health as well.

and speaking of your health, if you have not been eating well or exercising, now is the time! be sure to have good nutrition, especially if you will be requiring chemotherapy. if you are not sure about what foods are good for you, your doctor might be able to recommend a dietitian that could help you. it is time to say goodbye to the clown ( for the most part), and hello to the fresh fruits and vegetables department of the grocery store.

if you have been exercising regularly, you might have to scale it down a bit. i had to pack up my belly scarf and zumba shoes for a while. of course, check with your physician, but a short walk several times a week will probably make you feel better . don't get me wrong, though. i loved zumba, and i fully intend to get back to shaking my booty just as soon as i am able. it may take me a while, but it is one of my personal goals.

and speaking of personal goals, make some. look ahead to the future. cancer has a way of helping you decide what is really important in your life. none of us really have the time to waste on things that just do not matter. a cancer diagnosis can help you " cut to the chase" in your life. i will say again to surround yourself with positive, helpful people. and remember to thank everyone who has helped you. i wish you luck and good health going forward. i will leave you with my favorite quote from the hobbit, and one that i have used several times in my breast cancer blog. " so comes snow after fire. and even dragons have their endings."

good luck and best wishes,
bea

results from the big six months checkup- that i only had once this year

i am supposed to have my thyroid cancer check up every six months, and i usually do- that is until this year. because i was diagnosed with breast cancer this year, and was " involved" with that, i missed my check up in april of this year. the fact that i did miss that check up, added to the fact that i had a second primary cancer, caused me to be very apprehensive about this check up. i had the blood work ( six tubes out of the back of my hand- but that is another story) done last week.  yesterday , i had my ultrasound done first. i was a little anxious during the test  because the ultrasound technician kept going over one area again and again. it brought back memories of my first ultrasound, when my thyroid nodules were discovered. keeping the mood light, you might say, i asked the technician if she was seeing any " goblins" in there. appropriate for this time of year, i thought. she said everything looked fine. i guess she was just being thorough.

next up was a bone density test. the reason for this is that keeping the TSH essentially zero so as to hopefully prevent thyroid cancer recurrence , and the fact that i am now taking an estrogen blocking drug to help prevent any breast cancer recurrence puts me at a higher risk of having  osteoporosis. i have some bone loss in the " neck" area of one of my hips. it is not enough to warrant treatment, but unfortunately it is in an area that is prone to hip breakage. that said, i am not overly concerned about it. i am taking a high dose of prescription vitamin d, and my levels were good there. for some unknown reason, my calcium level was 9.3. it has never, ever been that high! i usually am in the 8 to 8.30 range. i am not taking a calcium supplement, but am trying( obviously doing a good job) to get calcium from foods. the reason that i am trying to get it through foods, is that when i was taking an oral supplement i got a kidney stone! natural (from foods) sources are best-  and it does not have to be entirely dairy products. kale, for example, has more calcium than a container of milk. kale also has two times the vitamin c found in a medium sized  orange, and has a healthy dose of omega 3 fatty acids, which is essential for brain health( heaven knows i need that!). one caution about kale: it is one of the worst foods for containing pesticides. if you decide to eat lots of kale, it would be best to go organic in this purchase.

the last part of my check up was a visit, or the big reveal, with my endocrinologist. i can not say enough good  things about my doctor! she is compassionate, willing to discuss my treatment, compromise when necessary and she listens to me! she does not rush me out the door. she decided to reduce  the dose of my levoxyl for three  reasons: one, i have lost weight due to the  chemotherapy, and thyroid hormone dosing is partly weight based. two, a TSH approaching zero can cause osteoporosis, as i had mentioned earlier. and three, a very low, or near zero,  TSH can sometimes cause heart arrhythmia's.  since it has been five years since my thyroid cancer with no recurrence, we both agreed to try a smaller dose and see how that goes. i am a bit nervous, i will admit, but i understand the reasons for reducing the dose. i am just hoping that this will not allow my thyroid cancer to return. with thyroid cancer, unlike some other cancers, a patient can have a recurrence at any time. there is no set time line for being cancer free with thyroid cancer, you have to be tested for the rest of your life and your dosage has to be finely tuned . if your thyroid hormone  dosage is too low, there is a chance for recurrence, but if it is too high, you have a risk of some serious side effects. it is a slippery slope, you might say, but no thyroid hormone supplement- be it naturally or chemically sourced can compare with having an actual functioning thyroid gland. feeling well without a thyroid is not easy, as i am sure that anyone who is missing one will agree.

so, i have made my appointments for my next big check up- which will be in april of next year. some of my blood work values are still not straightened out from having had  the chemotherapy. but they are improving, and i expect that the next time i have blood work done, everything hopefully will be back to normal. i am trying to rest, eat well and exercise. i have my last surgery for breast reconstruction next month. and my husband and i are going to go to the beach, which is something that i have wanted to do ever since i got the breast cancer diagnosis. i know that this is a thyroid cancer blog, but there is a link with my thyroid cancer and this second primary cancer. not all is known about the link at this time, but i am hoping that with continued research in both thyroid and breast cancer that perhaps in the near future we will have more information about the prevention of both of these cancers.

oh how i hate hearing these words: " oh, you have thyroid cancer? aren't you lucky to have the good cancer!"

unfortunately i heard those words YET AGAIN this week. and it was from a friend of mine who is a doctor. for me, hearing this from someone in the health care field is more frustrating than hearing it from someone who is not a health care professional. perhaps i just expect more compassion and understanding from someone in health care, but that is not always the case.

i did not hear these dreaded words  from my endocrinologist. she is very caring and understanding about thyroid cancer and the challenges that thyroid cancer patients face every day. i had to miss my big six month check up this past april, due to my breast cancer diagnosis. i will see my endocrinologist next month, though, and get one check up in this year. i am more nervous( than usual)  about this check up, i guess. having had another primary cancer i can not help but worry about how my thyroid cancer is doing. my surgeons reassured me that the cancer cells that they found in my breasts were not thyroid cancer cells, meaning that my thyroid cancer had not spread there. i do know that if you have had  thyroid cancer you have a fairly significant risk for other cancers. yet another worry for us .i would guess that these primary cancers occur , in part, by a weakened immune system. this is not fact, just my opinion.

here are some facts, though about thyroid cancer( and why it is not the good cancer). according to the american cancer society, there will be approximately 63,000 new cases of thyroid cancer in 2015. of these, 2,000 people will die of thyroid cancer in 2015. thyroid cancer  is the fastest growing cancer now. not the highest number of cases( yet), but one of the few cancers to have an increase in  incidence rates. thyroid cancer affects all age groups- from children to senior citizens. interestingly to me, the number of cases of women with thyroid cancer was about three times more than men. i have not read any theories as to why this is.

in a huffington post article, by anna almendrala, dr. allan ho, md, who is a medical oncologist at memorial sloan kettering cancer center is quoted as saying " recurrence can occur in about 10-30% of thyroid cancer patients, and take place 10-20 years after treatment.  the excellent survival rate associated with most thyroid cancer eclipses the hardships patients go through in treatment and lifelong maintenance of the disease." i am sure if you, like me, have sweated the six month ultrasound tests, and the blood work to test for the presence of thyroglobulins, that quote hits home. also worrisome is the fact that NO HORMONE SUPPLEMENT, either " natural" or synthetic can do what that little butterfly shaped gland  can do for our bodies. it is a constant struggle for most people, from what i have read, to discover what medication and dose works best for them.

if after reading this blog, and the few facts about thyroid cancer that  i have reported, you can still call thyroid cancer the " good cancer", then i suggest that either you do further reading ( the online source called thyca is a good choice) or by all means, talk to a thyroid cancer survivor. we can fill you in on the daily struggles of this disease and the struggles to help people understand what thyroid cancer patients live with, basically, for the rest of our lives. no cancer should ever be called the " good cancer". as a thyroid cancer survivor AND a breast cancer survivor i can assure you that i wish  i had had neither one.

http://beasunexpectedjourney.blogspot.com/2015/09/this-blog-is-2-fer-or-as-they-sometimes.html

" 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...my 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".

" 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...

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.........

thyroid cancer has lots of baggage, i think. for me it was skin cancer, and sulfite allergy.......

in my blog i have mentioned my bout with squamous cell cancer on my leg. it was about a year after my thyroid cancer. and while i do not think that my thyroid cancer "caused" this cancer, having thyroid cancer for so long before i was diagnosed certainly weakened my immune system. that is just my theory for having skin cancer so close to my thyroid cancer.

one subject that i have never, ever mentioned in my blog,though, is my sulfite allergy. you could say that it is what got me on the track to discovering my thyroid cancer. for years, i had been sulfite sensitive, and then all of a sudden it became a severe sulfite allergy- involving anaphylaxis. at my wits end, which was not too far of a trip at this point, i consulted an allergist. well, let me back up, i actually had to go to FOUR different allergists before i found one who A) believed me and B) wanted to help me.  the allergist i finally found was wonderful to me. the fact that someone finally believed me was such a relief! the only problem, was that while she prescribed some allergy medication for me, she said the only "treatment" is avoidance of foods/drugs/cleaning products,etc, that contain sulfites. before i go on to list some sulfite names, products,etc, i would like to explain how this allergist got me on the road to my thyroid cancer discovery. she told me that my immune system was severely compromised- that was why i was having anaphylactic reactions ( sometimes as often as 3 or 4 times a week) to sulfites. she told me frankly that she thought that i had cancer somewhere in my body! i had had all of my routine tests for cancer- mammogram, pap test, colonoscopy, so i racked my brain as to where it could be. the only area that i was having trouble was my thyroid----- BINGO! i found an excellent( i have to call her excellent, because she saved my life) endocrinologist who started with a very thorough biopsy, and well the rest is thyroid cancer history, you might say.

now, back to sulfites. what in the world are they? well, they are additives that are used to make food last longer and look better.( they keep food/medication from turning dark ) . in other words,   they stabilize drugs and other chemical solutions. they do not have to be listed on any product unless they contain more than 10 parts per million. some products, though, contain several hundred parts per million. and some fruit and vegetable products can approach 1,000 parts per million.
some common names for sulfite preservaties, when listed, are:
sulfur dioxide, potassium bisulfite, potassium metabisulfite, sodium bisulfite, sodium metabisulfite, and sodium sulfite. you could correctly say that the "sulfite" part in the name gives it away.

back when i was just sulfite sensitive, i had intestinal troubles- i will not list them, as you can probably assume what they were. when i progressed to an allergy, i developed a rash, tingling red skin, headache, trouble breathing, chest pain, in other words, anaphyaxis. ironically, one of the drugs to treat anaphylaxis, an epi-pen, contains sulfite preservaties to keep it from turning brown! in the past, i was able to obtain one brand of epinephrine( what epi-pen contains) which was sulfite free. that company is no longer in business, unfortunately.

people who have sulfite allergy or sensitivity are pretty much in the minority. ( sort of like the 5-10% chance of having thyroid cancer when you have thyroid nodules). i have had to research this for myself. my allergist has offered moral support, but i am the only one who can do anything to help myself. i have to avoid foods which i think contain sulfites. there is a large list- i do not have the space to list everything here, but i will give you the short list. some  fresh fruits and vegetables( to prevent browning), shrimp and lobster( same browning issue), condiments and relishes, white sugar, jams and jellies, grain products and pastas, snack food, processed foods, instant teas, the list goes on. for anyone really needing a complete list, i can recommend going online and searching sulfite allergy. i continue to learn about this, and it has been a major " game changer" in my life. i have not eaten out in a restaurant in over ten years. i buy only organic food, though some foods  naturally contain sulfites that i have to avoid, even organic. these are onions and garlic and grapes. i did not know how hard it was to cook without onions and garlic until this happened!

i asked my allergist when i saw her the year after her prediction, and told her about my thyroid cancer, surgery,etc. if this sulfite anaphylaxis would now go away. she said probably not- once the allergy pathways have been established( her words) they do not usually go away. i have read also, that sulfite allergy is more common in people who have asthma. i have mild asthma, by the way.

this is not a "whiner blog "today. i would just like to let people know about sulfite allergy and be educated. if i had only known about my sulfite problem and not kept eating the foods that were making me sicker and sicker, perhaps i would not have progressed to full blown anaphylaxis ? if my immune system had not gotten so compromised from fighting off the thyroid cancer for so long before i got treatment, perhaps this sulfite allergy would not have progressed ? who knows for sure, of course.   i have adjusted to my dietary restrictions, most of the time. occasionally, i will eat something that i think is o.k. but makes me sick. i can usually figure out what it was that made me sick, and i do not repeat my mistake.   i love to cook, so this is not as hard for me as it would be for someone who hates to cook. my family has been very, very supportive in this. for that i am extremely grateful. i keep epinephrine and hydroxyzine( an allergy medication) on hand for when i have anaphylaxis.

thyroid cancer has lots of baggage. it is not a quick fix, or a one pill solves all sort of cancer. it is not the good cancer.

"Thyroid cancer is NOT the good cancer!" i am so glad that this topic is being discussed, and that more people are beginning to realize that thyroid cancer is not something to be dismissed, or made light of. the following is a discussion ( perhaps) between barbie ( fashion icon) and midge( her best friend )

the conversation between barbie and her best friend midge went something like this:

barbie: " hi midge! i have not seen you in a while. like, where have you been?"

midge: " well, i have had cancer, barbie and have been recuperating for a while."

barbie: " oh, no! what kind of cancer did you have?"

midge: " papillary thyroid cancer with follicular variant, stage 3. my surgeon had to remove all of my
thyroid, plus two of my parathyroids, which were also cancerous, plus eleven lymph nodes."

barbie: " thank goodness you had the GOOD cancer, midge! you had me worried there for a while!"

midge: " well, it is not the good cancer, barbie! i had to take a sort of "chemo", called radioactive iodine( RAI 131). it was a rather large dose, 155 milicuries, and i have had a few problems with my salivary glands from the RAI. i  will also  have to be monitored with blood tests and scans  for the rest of my life. the recurrence rate for my cancer is about 30% and can reoccur  in 5, 10 or even 20 years from now. i also will have to take a thyroid replacement hormone for the rest of my life. my dosage will change often, and i will have to have regular blood tests to make sure my dosage is in range to keep me feeling well, while suppressing any thyroid cancer cells that may be circulating throughout my body."

barbie: " really, midge? i thought that you guys with thyroid issues just took a magic pill and everything was great!"

midge: " seriously, barbie? do you really think that a supplement hormone, synthetic or naturally derived, can take the place of the natural hormone that a healthy thyroid makes? the thyroid gland is called the master gland of the body. it controls everything in your body- every cell and every tissue. basically, barbie, from your perfectly dyed blond hair to your perfectly painted red toe nails."

barbie:" gosh, midge, when you put it like that, it is starting to make sense! why on earth would people call this the good cancer?"

midge: : " i have no idea, barbie, but maybe now at least you, ken and skipper will understand the truth behind the " good cancer " myth."

when i was first diagnosed with thyroid cancer, i was understandably scared. when someone told me that i had the good cancer, it was a relief of sorts. then i did lots of reading, and of course, experienced things first hand. at first, when well meaning people would tell me that i had the good cancer, i would let it go. NOT ANY MORE. i inform them, politely of course- they are not mean, just not well informed, that there is no good cancer. a year after my thyroid cancer was diagnosed, i had skin cancer. it was a fairly large squamous cell on my leg. i did not require any further treatment, other than in-office surgery to remove it. i honestly was not too worried about this, even though about 4,000 to 5,000 people die from this kind of skin cancer every year. i would never trivialize this, however. i repeat, there is NO GOOD CANCER.

a side note. i asked my doctor to prescribe cytomel for me. i am taking a small dose, 5mcg, and while i am now on one tablet daily, my endocrinologist has prescribed it for two a day, which i will probably work up to. adding cytomel has made me feel better- i have more energy in the late afternoon, and oddly enough, my vision has improved( i was having some blurry vision in the late afternoon). my doctor and i talked about perhaps adding cytomel at my last visit. my t3 had gone down almost a point, and while it was still in the normal range, it was low normal. when i started having symptoms, i contacted her and she prescribed it for me, my next round of tests is in april. i guess that i will be able to see how my t3 is at that time.

i hope you enjoyed this silly blog! and yes, i had barbie dolls when i was little. midge was my favorite however( she had red hair and freckles like me). if we can get barbie to understand that thyroid cancer is not the good cancer, maybe the rest of the world will follow.

" You picked a fine time to leave me, Lucille..." WAIT, THAT IS NOT WHAT I WANTED TO SAY! this is what i want to say: " I'M BAAAAACCCCKKK!!"

during my husband's eight week recovery from his second hip replacement, Christmas at my house 9 days after his surgery, and work, i have come to a startling conclusion: no, i am not the energizer bunny! i have let my blog go, i have not read a book in a while( this almost never happens), i have not been to zumba in a while( this also almost never happens), just to name a few of my favorite things that i have not had the energy or time to do. things are beginning to get back to yet another kind of " new normal", so hopefully i will again be able to do some of the things that i most enjoy .

now, my husband is an excellent patient. i am lucky. he never whines or complains .he has done just what the doctor told him to do- physical therapy, etc, in fact, he has a tendency to do too much. . but the hip surgery this time was a little harder on him. it was his right hip, so he could not drive for a very long time. that meant that i got to do quite a few extra chores. my favorite( can you detect the cynicism here?) was the trip to take our trash off. i thought i could do it, no problem. after all, how  hard could it be? i got the recyclables in their correct bins, and then headed to the main trash bin. i heaved the garbage bag over my shoulder and was aiming for the bin. now, i- like most people- know something about gravity. that trash bag did not go forward as planned, but almost landed me on my rear end! i just had to laugh at myself, along with a couple other people who were there. my subsequent trips to take the trash off went a lot better, i am happy to report.

sometimes i forget that i am living with a chronic illness. yes, i take a thyroid supplement each day and people, and that includes me sometimes, think that the "magic pill "is all that i need. i had no choice but to have that darn thyroid and two of my parathyroids removed. i am grateful to be alive. however, this is a game changer, so to speak. i get " power outages" i like to call them, when i do too much at work/home/ or wherever. i simply can not move sometimes when i get home! also, i have been having trouble with my vision- my eyes (TED?) get blurry and that makes reading a book difficult when i get home. i am not complaining, well, maybe a little bit. but my point is that we, as thyroid cancer patients, need to take extra good care of ourselves. i have been adding an extra hour of sleep  on to my bedtime, and that has helped some. sometimes, though, and i have heard this from other thyroid patients, the sleep that we get is not " good sleep". oh, to sleep like i did when the kids were little! i was so happy to get to bed, i just passed out. an elephant could have held a zumba class in my bedroom and i would not have woken up.

so, please take care of yourself, be gentle, and be patient. say no to extra stuff that you know will push you over the edge of what you can comfortably do. i am hopefully going to be back on my blog on a regular basis. i have a ton of books in my" to read pile" that i will be starting on. my zumba bag is now at least packed and ready to go. and i have a topic for next time's blog. " thyroid cancer is not the good cancer, and i am not going to take it anymore!!" stay tuned......