Monday, May 21, 2018

" ...the only thing to say every silver lining's got a touch of grey... i will get by, i will get by, i will survive...the abc's we all must face, and try to keep a little grace, ... we will get by, we will get by, we will survive. " from Touch of Grey, by the grateful dead

whenever one of my cancerversaries rolls around, sort of sad to have more than one, i get a little introspective. this time, on the 22nd of may, to be exact, i will mark three years of being a breast  cancer warrior. no, i do not use the word survivor. i prefer a stronger word, as i do not feel like a victim. i will admit that i cry a little, but i actually laugh more.i am so thankful to still be here with my family and friends. i do wonder as to why i am still here- what purpose have i left unfulfilled? what small or great things am i supposed to do?

on these cancerversaries, i also  look back on the process that brought me to this point in time. i had wonderful physicians, nurses and other health care  professionals working with me. the person that stands out, and i am talking here  about my adventures with breast cancer, is the radiologist who stopped the lumpectomy that i was getting prepped  in the hospital to have. she took one look at my latest x-ray, and said" i believe that there is another area of cancer not associated with the tumor and i would like to do a stereotactic biopsy to check it out." two other radiologists saw  that one particular area; one when i had the ultrasound at the beginning, and the other time when i had the needle biopsy. they both  remarked that it  looked " weird". i foolishly thought that if it looked that weird, they would do further testing, or at least consult with the surgeon. here is one example of not following my own advice. be your own best patient advocate. if things seem weird, something is probably not right. fortunately for me, i went home that day after the stereotactic biopsy and the results were in. there were indeed two areas of cancer. i went back to the surgeon the following week, and my "lumpectomy and radiation" changed to " bilateral mastectomies and three months of chemotherapy.". the radiologist who stood her ground, so to speak, said that she had to be able to sleep at night. she also said that she tried to treat her patients as she would her family. i am forever in her debt. there is no doubt in my mind that she prevented me from having a recurrence, and possibly even saved my life.

during the forty years that i worked as  a pharmacist, i really tried to do the same. i gave my patients the best care that i possibly could. i enjoyed the interaction with patient  counseling, and i liked answering questions . i also enjoyed helping people find OTC medications that might help them. my husband and i talked about when would be the right time to retire. we both agreed that if there came a time when we could not give 100% of ourselves to the work, we needed to step down. that is one reason that we both retired last year. chemo brain is real, ha. and i get tired easily,too. those 10-13  hour days are not so appealing anymore. i am enjoying having some time to do my crafts, attend activities involving my grandchildren( that i was mostly unable to do before), and just having some " me" time. every day is full, believe me. when people ask me, " what do you do all day?", i do not know where to start. and now, there is the flower and vegetable garden to work on. i do not sit around, and frankly, i told my husband that i think we are busier now than when we were working full time.

maybe this is a wonderful  gift. a gift that i am eternally grateful for. the gift of more time with my family and friends. i try not to think (too much) about a recurrence. i try not to get too stressed out when testing time comes around. i try to give back to others, even though it is not in the context of my professional  work now. i will survive. i am a two time  cancer warrior.


Tuesday, May 15, 2018

Lymphedema - causes, diagnosis, treatment and self care.

cancer carries a lot of baggage with it. PTSD, anxiety, fear of recurrence, also fear of getting a second primary cancer ( it is about 30% after thyroid cancer), testing anxiety, and other health disorders. i am going to discuss lymphedema. why? well, i have this condition due to cancer surgery, for one thing. for another, i know of several people who have this disorder/ side effect and need more information . i was not prepared for the lymphedema. i thought that the newer surgery for breast cancer- removing and testing the sentinel node, thus removing fewer lymph nodes, would prevent this from happening. i will add here that the sentinel nodes are the first ones into which a tumor drains. tracer material (a  dye) is injected and used to detect these nodes so that they can be removed and tested. removing fewer lymph nodes lowers the risk for lymphedema, i assume, but it certainly does not eliminate it. i also had surgery for thyroid cancer, at which time eleven lymph nodes in my neck were removed .

we have literally hundreds of lymph nodes in our bodies. the function of these lymph nodes is to help the body collect waste products, and probably more importantly, is a vital component of our immune systems. the best description of a damaged lymphatic system that i have ever heard came from my physical therapist. she said " imagine that our lymphatic system is a ten lane highway, transporting fluid into our blood stream. everything is going along fine until some lanes are closed. all of a sudden, that ten lane highway becomes a two lane, or even one lane highway. imagine the backup!" if this were a  backup of cars, there  would be wrecks and a lot of cursing. the backup of our lymph nodes will probably result in lymphedema- or swelling in the part of the body affected, as well as immune depression in that area.

it is important to note that while lymphedema is more commonly observed in the arms and legs, it is quite common in people who have had head or neck cancer. lymphedema at any location is best diagnosed and treated early. untreated lymphedema can cause many consequences- from heaviness in the area, to visible edema( swelling), soft pitting edema, and lastly, firm pitting edema which has permanent tissue changes. patients who have had surgery and/or radiation for head and neck cancers have about a 50% chance of developing lymphedema. LET THAT SINK IN! i was surprised when i read that statistic, which comes from four European studies.

how do you get a diagnosis? there are some expensive tests, or the most common way is by observation, patient history ( cancer surgery and treatment), and measurement. in my case, i saw a physical therapist. and not just any physical therapist, but one who is a CLT( certified lymphedema therapist). a CLT has to have at least 135 hours of training and pass an exam to be certified. a physical therapist who is not a CLT, may get some lymphatic training in school, but i would heartily recommend going to a certified physical therapist.

this is my experience with getting  a lymphedema diagnosis and receiving some treatment. i noticed that the arm on the side  where i had sentinel lymph nodes removed during my bilateral mastectomies, was beginning to swell a bit. this was several months after my surgeries and treatment were finished. i asked my family doctor for a referral to my physical therapist, who then measured both of my arms in several areas. this measurement was done a couple more times during and after my treatment to measure my progress. the treatment my physical therapist used is called " manual lymph drainage massage". this encourages the flow of lymph node fluid out of the arm or leg. it is not for everyone. if you have blood clots or infection, massage should be avoided. lymph nodes are very close to the surface, so the massage used is gentle, and the CLT did the massage in a particular order to get the fluid moving in the correct direction. this worked very well for me, and i showed improvement after several sessions.

i also wear a compression garment every day. the one i wear is called an active wear compression garment. it gently stimulates the lymphatic system. i tried the traditional compression garment, and while it may work for some, it was tight and uncomfortable for me. i found myself not wearing it because it was so tight and difficult to put on. i really like the active massage garment. it is an important part of self care, which is where i am now. i will also mention that it is important not to get sunburned or injure the affected limb ( bug bites, cuts, etc) if possible. remember that  your lymphatic system is compromised now, and even a small cut or bug bite could cause cellulitis- a serious skin infection.

Lindsay Lewis, a CLT at MD Anderson cancer center, uses a special program to help patients with lymphedema caused by head and neck cancers. it involves gentle massage, special garments, skin care techniques and special exercises. my CLT did tell me that even in the CLT certified physical therapists, there are those who specialize in arms and legs and those that specialize in the head and neck area. be sure to ask what area a CLT specializes in before you begin treatment.

Lymphedema is a life long condition. it can have serious consequences if not diagnosed and treated promptly. there does not seem to be enough information for patients and health care professionals  about this side effect of cancer and cancer treatment. i urge everyone who has had head, neck, breast, or other cancers and may think that they have lymphedema to seek treatment. and be informed. remember that knowledge promotes understanding.

Addendum: two important things that i forgot to post! first, be sure to remind your physicians and nurses not to take blood pressure readings in the arm that you have lymphedema in. you should also not get blood drawn from that arm!

secondly, there is a very good blog  that addresses lymphedema on a personal level, by a lymphedema patient. her name is Sue Callison and the name of her blog is " Sue Callison- My lymphedema life". she talks about self care and dealing with lymphedema on a daily basis. she also sells the active massage products that i am so fond of!( Solidea Active Massage compression garments) please check it out! and by the way, i am passing along this info with no compensation from her company or anyone else. i do not profit in any way from any of my blogs. i am just trying to help others.

Saturday, May 5, 2018

" when life gives you lemons, instead of champagne, don't worry little children, and don't complain. remember you're golden, so find some sugar cane. when life gives you lemons, make lemonade." Lemonade, by alex boye

i have used this song before in at least one previous blog, maybe two. if you are not familiar with alex boye, especially this song, i urge to you to give him a listen. recently i was reading some comments on a thyroid cancer facebook site, when i came across some  discouraging and i think sad remarks from a thyroid cancer survivor. this woman would not stand up and be recognized at some function as being a cancer survivor, because we all know that thyroid cancer is the GOOD CANCER, and she felt undeserving of the title of cancer survivor. now, i will admit that i am a little uncomfortable using the term " survivor" when it relates to my thyroid or breast cancer. this is only because i like to think of myself as a warrior, not a survivor. survivor to me seems like a passive type of condition. like a person did not fight hard to get well, that perhaps they only hung on, like a rat on a sinking ship, while someone else did the hard work.

i have never been bitter about having had cancer twice. i have never said " why me?" what good would that do? i knew about the 30% chance of having another primary cancer when i had thyroid cancer. was my breast cancer caused by my RAI dose, or something else? i knew that some people think that a large RAI dose can  possibly cause breast cancer. i also knew that if i did not have the RAI, i might have a recurrence of my thyroid cancer, and it might just come back with a vengeance so to speak. what to do? i was informed, and i made the best decision that i could make. i do not regret my decision in any way. in offering advice, i will say that a person needs to be informed of the risks  verses the benefits of all treatment for cancer. i made sure to get my yearly mammograms, and that is how my breast cancer was discovered. it was a little more advanced, and the type of breast cancer that i had was a little more aggressive than i would have liked. but making sure to have all of the tests that are recommended for you is essential. early diagnosis and treatment are keys to treating any cancer.

another thing that worries me is when someone says that they have " survivor guilt." i have said above that i did not ask why me, nor was i bitter about having had  cancer twice. but also, i have not had any survivor's guilt. i feel empathy for those dealing with conditions worse than mine. being in health care, i saw these patients on a daily basis. maybe that is why i did not feel sorry for myself. i mean, there is always someone who has it worse than you do, to be blunt. i did the best that i could do to take care of myself. i am here, why i am not sure, while some  others have not been so fortunate. but i feel proud that i have tried my best. i told my husband that if either ( or both) of my cancers returned, i would know that i have fought hard, and i have done everything that i could possibly do to live. i am a cancer warrior, not a survivor!

having a good, positive attitude is so very helpful to having  a good quality of life. my family doctor asked me if i was depressed. i told him no, and he looked very surprised. i understand the difference between clinical depression, and situational  depression. i know that some people have chemical imbalances and can not help that they are depressed. but with me, i am able to choose to be happy. i choose happiness- i have not let cancer beat the pollyanna attitude out of me. when i was little and i would get sick, i would  tell my dad " don't worry, i will feel better tomorrow." that is pretty much how i feel now, as an adult. i am not saying that things are always puppies, butterflies and rainbows for me, but i try to make the best of what happens. in other words, if i get a bunch of lemons, i make lemonade- just  like alex boye does.

thyroid cancer is NOT the good cancer! i think that this will have to be said about a million more times before word gets around. or before people listen and understand. all of you out there who are thyroid cancer patients are not just survivors, you are warriors. just like me.

Sunday, April 29, 2018

Medullary and Anaplastic thyroid cancer

these two types are the serious and more difficult to treat thyroid cancers as compared to the differentiated thyroid cancers that  i just mentioned. this will be a basic overview of these two rare cancers. it is extremely important, if you have one of these types,  to see a physician who specializes in these cancers. there are also support groups on the thyca.org website that offer information and support for those patients dealing with either of these types of thyroid cancer. 

medullary thyroid cancer begins in the "C" cells of the thyroid gland. these "C" cells produce the hormone calcitonin . it is very important to note that elevated levels of the hormone calcitonin in the blood stream can possibly be an early indicator of medullary cancer. there can be a genetic link associated with this cancer. medullary cancer accounts for about 3 to 5 percent of all thyroid cancers.

i will mention treatment of medullary cancer ( MTC)  here because it is a little different than treatment of the differentiated thyroid cancers. surgery to remove the thyroid gland is indicated, as with differentiated thyroid cancers.  unfortunately, medullary thyroid cancer does not respond to the radioactive iodine treatment. early detection is key to survival. there is an aproximately 90% survival rate after 15 years if detected early, surgery is performed, and the disease has not spread to distant sites. if there is some involvement in the neck area, the survival rate is reduced to 76%. if however, there are distant metastases( the disease has spread, in other words)  the survival rate drops to only 3%. there have been two new drugs approved for the treatment of MTC within the past couple of years. . the names of these chemotherapy drugs are: vandetanib and cabozantinib. there are side effects that one might expect with traditional chemotherapy drugs. careful monitoring of patients with MTC is crucial- to determine the staging and if chemotherapy or radiation is indicated. quality of life is also a consideration.

anaplastic thyroid cancer (ATC) is " one of the most aggressive solid tumors to affect humans." according to the Journal of Oncology, vol. 2011, article ID# 542358. this type of cancer is not present in children. it occurs in adults over 65 or  70 years of age. in one study, cited by the Journal of Oncology, 67% of patients were over 70; females comprised 70% of those patients, while
 males comprised 30%. thankfully, ATC makes up only 1 to 2% of all thyroid cancers. the median survival rate of ATC is only 3 to 5 MONTHS.

treatment for ATC is surgery, and can include the chemotherapy drug doxorubicin. only 22% of patients respond to this chemotherapy drug, however. newer drugs are being studied, and hopefully there will be a better treatment on the horizon. ATC is a rapidly growing, aggressive, " get your affairs in order" type of cancer. the very best thing that can be said about ATC is that while differentiated thyroid cancers are on the rise, and are the fastest growing( in numbers) cancers in the US, according to the American Cancer Society, ATC cases are actually decreasing.

so, i have provided a quick overview of the main types of thyroid cancer. i sincerely hope that this information has been of some help. perhaps those reading this are thyroid cancer patients, or have a loved one or family member who is a thyroid cancer patient. with better education, comes better understanding. i began these blogs when one of my physicians called my thyroid cancer the " good cancer". i wonder what he would say after reading my blogs...

Follicular thyroid cancer, 101

Follicular thyroid cancer comes from the follicular cells of the thyroid. as i said, i hope, in my last blog, these follicular cells produce and store thyroid hormone. this type of thyroid cancer usually occurs in older adults- aged 50 and older. this type of cancer accounts for about 10 to 15 percent of all thyroid cancers. hurthle cell cancer is a rare, thankfully, and usually more aggressive form of follicular cancer. hurthle cell cancer is less likely to respond to the RAI, than say " regular" papillary or " regular" follicular." it is more likely to spread into the neck via the blood vessels, generally not the lymph nodes, thus spreading the cancer to other parts of the body. those parts usually  being the lungs and bones.

a term that one might come in contact with is " differentiated thyroid cancer" which includes both papillary and follicular types of cancer. this just means that they are somewhat similar to a non-cancerous, or normal, thyroid cell. differentiated thyroid cancers have a higher survival rate because of the iodine link to normal thyroid cells. normal and cancerous thyroid cells of differentiated thyroid cancers will both take in iodine. if you feed the differentiated thyroid cancer cells radioactive iodine, they will eat it up like a normal, non-cancerous thyroid cell. but it will hopefully kill them and their buddies,too. in this situation, it is better to have a differentiated thyroid cancer than a non-differentiated one. but of course, there are many other factors to consider- staging just being one.

the survival rate for both papillary and follicular thyroid cancers is around 90% if diagnosed early. the rate of recurrence is still around 30% for follicular as well as papillary, and recurrences of follicular can occur decades later after the initial diagnosis and treatment. as with all types of thyroid cancer, tests, blood work and monitoring will need to be done for the rest of a patient's life. the good cancer? i think not.

now on to the next blog... it is a combo of two very serious thyroid cancers: medullary and anaplastic. 

Wednesday, April 25, 2018

Papillary thyroid cancer, 101

Papillary thyroid cancer is the most common type of thyroid cancer. about 80% of all thyroid cancers fall into this category. papillary ( as well as its buddy, follicular) form in the follicular cells of the thyroid gland. these are the cells that make and store thyroid hormone. as a side note, it is important to mention  here that this hormone contains iodine. this explains why RAI works in the treatment of these cancers.  the variants of papillary thyroid cancer, which i will mention, but not go into detail about, are as follows: columnar, diffuse sclerosing, follicular variant of papillary( i had this,too), hurthle cell, and tall cell. while papillary cancer is considered slow growing, the variants of papillary thyroid cancer can grow and spread quicker than " just plain" papillary thyroid cancer. this is where it gets a little confusing. the follicular variant of papillary thyroid cancer is different than " just plain" follicular cancer. it is considered to be slower growing than the other papillary thyroid cancer variants. HOWEVER, papillary cancer can certainly spread to the lymph nodes in the neck, as well as to other parts of the body. i have been told by my radiologist, that when thyroid cancer spreads, two of the favored locations in the body are the lungs and bones. this may explain some tests you may receive if you have this type. examples:  chest x-rays, cat scans, etc.

people in their twenties to sixties tend to get this type of thyroid cancer. but a person of any age, even a small child, can get thyroid cancer. according to the American Academy of Otolaryngology- head and Neck Surgery,  " thyroid cancer is the third most common solid tumor malignancy and the most common endocrine malignancy in children. it occurs four times more in females than in males. " papillary thyroid cancer is the most common kind of thyroid cancer in children, as well as in  adults. the signs and characteristics of papillary cancer in children are pretty much the same as in adults.

it is not clear what causes thyroid cancer. some sources state possible  exposure to radiation. two things that i have heard mentioned as possible links are :  dental x-rays without the proper precautions and x-rays of children's feet for easier  shoe fitting ( this was done in the 1950's i think. i did not have that done, by the way). there are several theories, but no one knows of a definitive cause as yet. a FORMER endocrinologist of mine, kept asking me " why do you think you got thyroid cancer?" she made me feel like it was my fault somehow. i only saw this doctor briefly. my current endocrinologist has never asked me this question. since no one can be sure what causes thyroid cancer, all that we can do is to make wise decisions when it comes to our testing and health care.

treatment for papillary thyroid cancer is generally surgery, and possibly RAI ( radioactive iodine) dosing. my treatment was a total thyroidectomy, removal of eleven lymph nodes, removal of two parathyroids, which were also cancerous, and a large dose of the RAI ( 155 milicuries). i received the RAI  a couple of months after my surgery. the decision to have RAI therapy or not  is generally decided by the radiologist or oncologist after the surgery. my tumors had ruptured and spilled out into my neck area. i had three tumors, two of which were fairly large. some patients do not want the RAI, due to side effects. it is an individual decision, with no " one size fits all" solution. my endocrinologist told me that even the most brilliant surgeon can not get all of the tiny bits of the thyroid cancer cells that have made it out of the tumor into the neck area. i decided to have the RAI since it made the most sense for me. i would make that decision again, by the way, even with the salivary stones issues that i have had. traditional chemotherapy drugs do not work for this cancer, which is another fact to consider when coming up with an individual treatment plan.

papillary cancer is slow growing, yes, but it can spread. depending on the staging, papillary cancer can have an excellent survival rate.( about 90% if diagnosed early ).  but, the rate of recurrence is about 30%. and recurrences can occur decades after an initial diagnosis. monitoring- ultrasounds and blood work,usually- will continue for a lifetime. changes in doses of thyroid hormone replacement drugs will also occur. it is not easy to suppress TSH, therefore hopefully preventing recurrence, and at the same time, finding the dose that the patient feels good on.  it is a slippery slope, and one that i can attest to.

next blog: follicular thyroid cancer, 101


Tuesday, April 24, 2018

What are the different types of thyroid cancer? And yes, there are more than just one...

as i mentioned in my last blog, i told my gynecologist that someone who had anaplastic thyroid cancer would certainly not think that thyroid cancer was " the good cancer". the fact that he seemed confused, and seem not to know that there are several different types of thyroid cancer, was the inspiration for this blog. i know that most thyroid cancer patients know that there are different types, but i thought that it might be a good idea to discuss each particular type of thyroid cancer. this will be another mini series of blogs relating to the same issue. each type of thyroid cancer will have it's own blog, and i will provide the information that i have on each type of thyroid cancer. details on  new treatments for and research on treating the different types of thyroid cancer may not be available to me now, so please do not think that what i have to say about the different types is the definitive last word, so to speak. and i probably do not have all of the information, but i will give you what i have.

and, it depends on what sources you are consulting, as to how many types of thyroid cancer are defined. some sources say four, some say five. some cancers, such as papillary, have different variants, but are grouped under the umbrella of just papillary. i will mention these variants briefly. staging is very tricky and a little complicated. i am not going to go into this, as it would take several blogs to cover it. if you are interested in staging, or if your physician has not told you your stage( i would advise that you ask your physician, first, of course) there is a detailed breakdown of staging on the thyca. website. every thyroid cancer patient should make thyca.org their friend.

i have decided to discuss four of the various types of thyroid cancer. and i will briefly mention any variants of these main groups. the groups are as follows: papillary, follicular, medullary, and anaplastic. some people have just one, and some, like me, have a combination of the above mentioned types.

at this point in my introduction, i can not stress enough the importance of being your best own patient advocate. be informed by reputable websites, books, and knowledgeable health care professionals. know your type of thyroid cancer, stage, and best treatment options. keep all of your test results, and overviews of office visits in a notebook for easy reference. i mentioned this in a blog that i wrote some time ago, but one time  my endocrinologist was missing some test results in my folder that she needed to see. it seems that her office had switched computer program systems, and the test result that she needed to see had been deleted. i happened to have my " thyroid book" with me, and poof, there was the test that she needed! your doctor has many other patients- you are not the only one she/he has to take care of. take care of yourself by being informed. it is the best piece of medical advice that i can give to anyone.

one thing holds true for any patient who has/had thyroid cancer. it is a life long condition. it requires constant testing and monitoring  for recurrences. ( which can occur decades after the initial thyroid cancer diagnosis.)  there is also regular blood work done  to make sure that patients' TSH is suppressed, if need be, for example. T3, free T4 and other tests also are important and certainly affect the quality of life. it is a roller coaster ride for almost everyone, with frequent dosage changes being the aggravating norm.  thank goodness for thyroid hormone supplements, but nothing can compare to  the thyroid hormone made by a healthy thyroid gland.

enough of the introduction. my next blog will discuss papillary thyroid cancer.

Thursday, April 19, 2018

a thank you to those who follow my blog...i was surprised and honored by this.

Anuj Agarwal anujsagarwal@feedspot.com

7:47 AM (11 hours ago)
to me
Hi Bea Young-Smith,

My name is Anuj Agarwal. I'm the Founder of Feedspot.

I would like to personally congratulate you as your blog Losing the Butterfly has been selected by our panelist as one of the Top 15 Thyroid Cancer Blogs on the web.


I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 15 Thyroid Cancer Blogs on the internet and I’m honored to have you as part of this!

We'd be grateful if you can help us spread the word by briefly mentioning about the Top 15 Thyroid Cancer Blogs list in any of your upcoming post.

Please let me know.

Best,
Anuj

" ...sometimes i feel a little mad...but i'm just a soul whose intentions are good, oh Lord, please don't let me be misunderstood." " don't let me be misunderstood" lyrics by the animals

i had my yearly check up with my gynecologist this week. things were fine- just routine stuff. he gave me sort of a "mini- physical". the doctor listened  to my chest, blood pressure check,etc. and  all was fine until he said, " well, now, let me check your thyroid." as his hands encircled my neck, i said, " oh, well, i had thyroid cancer, remember?, so i do not have a thyroid." and then he said those awful words. those words that make every thyroid cancer patient's ( well almost every) blood boil. " well, if you have to have cancer, that is the good one to have! easily treatable, high cure rate,etc." at this point, i sort of tuned him out. i wish that i had said more, but what i did say was, " well, i would not say that to someone who has anaplastic thyroid cancer." FYI,  there are at least five different types of thyroid cancer, with anaplastic being the most serious. a person can have one, or a combo like i had.

i had stage three papillary, with an aggressive area  of follicular variant. two of my parathyroids were also cancerous and had to be removed. i had 11 lymph nodes removed. because of the stage and aggressive nature of one of the types of thyroid cancer that i had, i have to still be monitored with blood tests, ultrasounds, and office visits every six months. and it will be 8 years on may 19th. it is a real challenge to keep my thyroid levels at the point where my TSH is suppressed enough to hopefully prevent a recurrence of the disease, while still maintaining a good quality of life.

i am a member of several thyroid cancer websites. i am constantly reading posts that state that someone has told a thyroid cancer patient they have the " good cancer". good and cancer do not belong in the same sentence, in my opinion. i used to say nothing when someone said this to me. i know people are trying to be nice, but i had hoped that this misconception about the " good cancer"was going away. the symptoms of a hypothyroid patient, with a thyroid that functions somewhat, are many. the thyroid is the " master gland" in the body and controls just about everything. being hypo after having the thyroid removed puts patients into a whole new level of hypo. thank goodness for thyroid hormone supplements, but they are no where near as good as the hormones produced by a happy, healthy thyroid gland.

and we should not forget that if you have had thyroid cancer, you are at about  a 30% risk of having another primary cancer. i know all about that,too. that is why this is a 2Fer blog. so, although my gynecologist meant well, i believe, i expected more understanding from a health care professional. i do feel like thyroid cancer patients are very misunderstood. it is not a five year and you are done kind of cancer. thyroid cancer requires lifelong monitoring and testing. thyroid cancer is the fastest growing cancer now in the country. perhaps as more people have to deal with this, there will be more understanding of the challenges facing those with thyroid cancer. i sure hope so...

Monday, March 26, 2018

" Lord almighty, i feel my temperature rising, higher, higher it's burning through my soul...help me i'm flaming, i must be a hundred and nine...i feel like i am slipping away, it's hard to breathe...just a hunk, a hunk of burning love." burning love, by Elvis Presley

so in the first blog of this series, i talked about the RAI diet- and how you have to wait a while before you can have that cheeseburger in paradise. the second blog was somewhat boring- a technical mash up of why the diet is important, what RAI actually does for you, and some tips and procedure advice. this final blog ( for now anyway, i seem to return to this topic on a somewhat frequent basis) is just a retelling of my experiences with the treatment dose of RAI.

in my family, whenever we tell a story we always start with " and so i got there." i will begin there. i talked my endocrinologist into letting me have my RAI treatment dose at a hospital near me. that was so i could be at home for my isolation, and not in the hospital. so i got there( to the hospital near me) and met with the radiologist who would be taking care of me during my adventures with radioactive iodine. the radiologist started off reading from the pathology report- explaining to me why i needed such a large dose of the RAI. the short version is that i had : unencapsulated tumors, diffuse infiltration into my neck bed and lymph node area, stage three,etc. i also found out that i had cancer in two of my four parathyroids.  when he was telling me all of this, i actually had to refrain from turning my head to look behind me. surely he was talking to someone else! my husband was with me and i highly recommend taking your spouse, best friend, neighbor, or whoever with you when you are to be receiving news like this. at times i just spaced out, but my husband filled in the blanks for me later on.

i had my surgery on May 19th, 2010. i had a thyrogen injection on july 19th, along with a chest x-ray and a full CBC ( blood work). on july 20th, i had another injection of thyrogen,. on wednesday, drum roll here, i had my treatment dose of RAI. thursday i got to rest- ha,ha. and then on friday, more blood work. the following week, i had to come back to the hospital for a full body scan. nothing too interesting about the thyrogen injection on the 19th and 20th, but the day i got my RAI was a day that i will never forget.

i was apprised again of the "rules of being radioactive." i was sitting in a treatment room, alone, when the radiology technician came in. at least i think that it was her. whoever it was had on a full haz-mat suit- from head to toe,  although it looked a little bit like she was planning a walk on the moon instead of handing me my RAI dose. what she placed on a little table in front of me was in a very heavy lead box about the size of some canned goods. inside, the walls were about three inches thick all the way around. there was a glass vial inside that contained a capsule, about the size of an extra strength tylenol, that was filled with some white powder. there was also a small bottle of water. she told me, in a muffled voice,  that i was to open up the box, AFTER SHE LEFT THE ROOM,  remove the capsule from the glass vial, and swallow it as quickly as possible. she said that it needed to go down fast- not roll around in my mouth. i somehow  managed to get it down without choking. before the technician left the room, she told me that  from the time i swallowed the capsule, i had exactly one hour in which to drive home and get upstairs in isolation.

in order to deal with the situation, i immediately thought of the show " mission impossible". the theme song was going around in my head. i had accepted the mission and i had to move quickly to complete my task, before myself and everyone around me, crashed and burned. i will now say that about 30 minutes into the trip home, my throat got sore and i felt like someone was pressing on my throat where my thyroid had been. later on, after i had sprinted upstairs to my isolation room, i did feel hot to the touch, and i had some nausea. this is what made me think of the "burning love" song. i would have liked an anti-emetic, but a cold wash cloth and sipping on some ginger ale worked pretty well. even though i had snacks upstairs in a dorm refrigerator, i did not feel like eating. i did drink sour lemonade and lots and lots of water, though.

so, i made it to friday. i drove myself to the hospital and prepared to make my way to the lab for another blood test. i could find my way to the radiology department blindfolded, but i had never been to the lab. i was told to keep at least 6 feet between me and others, and to not get anywhere near someone who might possibly be pregnant. as i was making my way down the hall, i happened upon a man from housekeeping who was buffing the floors. i had to yell, which made it worse i think, " i am radioactive, stay back from me, but could you please tell me if i am heading in the right direction to get to the lab?". needless to say, he certainly kept his distance. in fact he was probably thinking, " man, this lady needs directions to the psych ward instead of the lab." he did tell me that i was on the correct path and to turn left two doors down the hall way.

which brings up another interesting story. this one deals with the fact that i was not to  get anywhere near someone of childbearing age. the med tech at the lab, who was holding a huge needle and heading straight for my poor over-stuck arm, was of child bearing age. i was going to try to be subtle, but the situation called for action. i shouted, " are you pregnant?" the med tech immediately smoothed down her scrub top, and said, " well no! my oldest child is four years old." i know that she was thinking " i wonder if this top makes me look fat?" believe me, you do not want a person wielding a large needle to be pissed off at you! i told her quickly that i was radioactive, and was told to ask this before my blood test. she looked relieved, and actually thanked me for asking- eventually.

i had nausea for four days. i could go downstairs after my husband left for work, but i had to wear disposable gloves and sit on a piece of plastic. i put a plastic, disposable mattress cover on the bed upstairs. i bought some cheap sheets and a couple of towels that were discarded after i " had done my time in isolation". i also discarded the clothes that i had been wearing, along with magazines and paperback books that i had been reading. all my plates, cups, utensils had to be discarded. i did choose the ones that were made from sugar cane or whatever. my husband would come home, fix dinner, put it on the stairs and run! actually, he sat in the dining room where i could see him. we could talk that way and that was actually nice. after a few days of this, however, i felt like the crazy woman in those Victorian novels- you know, the one who gets locked up in the attic? i was lonely, and i really, really wanted a hug from my husband! of course, that was not possible. besides, one of us " glowing" was enough.

which brings me to my full body scan, which was done  on July 28th. it was an open scanner, thank goodness, and they scanned me slowly from head to toe. i felt like i was holding my breath the whole time which was not possible, as the scan lasted about 45 minutes. when they were finished, the technicians said, " wow, your neck lit up like a Christmas tree!". ha- ha- ha. that did not put me in the holiday spirit, you might say. but  then i tried imagining that the RAI had light sabers, and that there was a fierce battle going on in my neck. i preferred to think that the jedi RAI fighters had the advantage over the rogue thyroid cancer cells.

and in fact, that was the case. my final results were as follows: chest x-ray was clear; there was  focal uptake in my anterior neck( think Christmas tree), but no evidence of distant metastatic disease in head, chest, abdomen, or pelvis. i had another full body scan in december of that year, with similar results. i did have elevated TGA and TG for the next three and one-half years,  but that is another story for another day.....


" well, i'm hot blooded, check it and see, i got a fever of a hundred and three, i'm hot blooded, hot blooded." hot blooded, by foreigner

this is my second in a series of blogs about radioactive iodine( I-131), the treatment dose. also known to his friends as RAI. one does not really have a fever after receiving RAI, but you perhaps could  think of yourself as being " hot blooded".  in this blog, i will give some  of the facts, information and so forth about RAI. in my third, and last blog on this subject, i will relate my personal experience with that wild and crazy guy.

so, your thyroid cancer ( usually papillary, follicular, or both) has been shown to benefit from a dose of RAI. this depends on the tumor staging. lower risk patients may just have surgery and not the RAI. higher risk patients will most likely get a dose of the RAI. this dose is expressed in millicuries. the usual range of RAI is between 100 and 200 millicuries, as i stated in my last blog. the treatment dose of RAI is usually given between 3 and 6 weeks after surgery.

to get ready for the RAI, you will need to be on the low iodine diet. since you read my last blog, you realize how important this diet is to your treatment success, so you have followed it religiously. another very important part of preparation before RAI is raising your TSH level. why, do you ask? well, it is important that every remaining thyroid cancer cell be awakened and ready to gobble up the RAI. TSH stimulates the thyroid cancer cells to take up the radioactive iodide cells. the low iodine  diet and raising the TSH work together to insure that the RAI is effective in killing the remaining thyroid cancer cells. these thyroid cancer cells may be rogue- in different parts of the body already. or they may be just hanging out in the neck area. either way, to prevent recurrence of the disease, it is important to kill them.  i liked to think of the RAI as little jedi knights, complete with light sabers. i will expand on this in the next blog, when i talk about my own experience.

there are two different ways to raise the TSH. one is brutal- the patient has to be off thyroid medication for 3 to 6 weeks. this is brutal because most people do not want to be without thyroid medication. ask any hypothyroid patient how they feel without their medication and they will definitely explain the mental fog, fatigue, body aches, etc, associated with a high TSH. there is another way to raise the TSH, thankfully. the TSH can be raised quickly with Thyrogen injections. it is a series of injections given a few days before the RAI is given. both methods  are considered equally effective. my doctor recommended the Thyrogen injections for me- i was still working ( up to the actual RAI dose) and it would have been impossible for me to do my job with brain fog. i was very fortunate that my insurance company covered this medication- some do not.

unfortunately for me, i could not get my doctor to prescribe anti-nausea medication prior to me receiving the RAI. some doctors will routinely do this, but my doctor did not. i did have pretty much nausea after receiving the RAI, but i did not actually vomit, thank goodness. the nausea only lasted about a day or so. if you are prone to nausea, as i am, i would recommend at least asking your doctor for some anti-emetics, if they do not routinely prescribe them.

some people stay in the hospital after the RAI is administered. some people go home- as i did. it depends on many factors. who is sharing your home( small children, pregnant women,etc), how your home is constructed- do you have an area, say an upstairs part, that you can be isolated in? the time of isolation varies. your physician will tell you the length of time that you need to be isolated. you will still be on the low iodine diet for a while during RAI and for some period of time after treatment. it takes a while,it could be months,  for those little jedi knights to get to all of the thyroid cancer cells.

between 2 and 10 days after the RAI treatment dose, you will have a whole body scan. getting to the hospital for this can be very tricky. you need to stay at least 3 to 6 feet away from people, especially children and pregnant women, for at least 8 days. you also need to keep a safe distance from your pets. most radiation from the RAI,( although radiation detectors at airports,etc, can detect small amounts of radiation for up to three weeks), is gone in about a week. your physician may have specific instructions about the amount of time you need to be isolated. please be sure to follow these instructions. you do not want to expose anyone unnecessarily.

another good tip, which i did not read about until after my RAI, is that it is a very good idea to get a good dental cleaning prior to treatment. the RAI affects the acidity of the saliva, and can also  cause dry mouth. dry mouth can lead to dental issues, i.e. tooth decay. it is also recommended that harsh toothpastes and mouth wash be replaced with sensitive toothpastes, or better yet, baking soda.  brushing your teeth with baking soda, several times a day, and flossing is very important. the RAI can cause a metallic taste for some, so the frequent brushing with baking soda may help with this issue as well.

i have just mentioned a few basic facts, tips and precautions associated with a treatment dose of RAI. every one's situation is different. your physician may recommend other tips and precautions that would be more helpful for your situation. be sure to have a clear understanding of what you need to do to help keep yourself and others safe during the RAI. a treatment dose of  RAI should not be physically painful, but being in isolation is difficult. it is emotionally draining. i wanted a big hug from my husband, but of course that was not possible for a while. i will admit that i was lonely during this time of isolation. i had paperback books and magazines to read ( i disposed of them afterwards) and i could come downstairs and watch TV when my husband was at work. i had to wear disposable gloves and sit on a piece of plastic on the couch. for more of my adventures of RAI story,  please stay tuned for  the next blog...





Thursday, March 22, 2018

" i like mine with lettuce and tomato, heinz 57 and french fried potatoes,big kosher pickle, and a cold beer.." now hold on a minute, Jimmy Buffet. if you are getting ready to be on the low iodine diet before your I-131 treatment, your "cheeseburger in paradise" is going to have to wait a while...

it is rare, or maybe i have never written two blogs in two days, but here  is a subject that i would like to expand upon: the low iodine diet for patients before a treatment dose of I-131 is given. in my next blog, this will be a short series, i will go over isolation procedures  after the treatment dose of  I-131. what to expect, how to prepare for it, what to do,etc. but, again in my opinion, the diet is probably the most important part of the treatment. why, do you ask? i will explain, but first i will mention that the thyca website has some excellent information on this subject. here you will find  recipes and useful information. i personally purchased an excellent book on the subject. it is called, not surprisingly, " the low iodine diet cookbook" by norene gilletz. the author explains some of the reasons why a low iodine diet is so important. ms. gilletz also has tons of recipes, and they are grouped into breakfast, lunch, dinner, desserts, snacks, and children's menus. the introduction to the book is written by Dr. Kenneth Ain. he explains the importance of reducing iodine in your diet before, during and perhaps for a short time  after receiving the I-131 treatment dose. i will try to explain it in my own unique way...

thyroid cells love, love to " eat" iodine. they use it to make thyroid hormone. if you have had surgery for thyroid cancer, and your thyroid is gone to wherever they send bad thyroids to, theoretically you should not have any thyroid cells left  in your body. but let us pretend that the thyroid gland is the mother ship. before the mother ship is destroyed, it sent out escape pods ( little bits of thyroid cancer cells) to other parts of the body. ( they especially like to go to the lungs and bones). so these rogue thyroid cells are now escaped thyroid cancer cells . even the best surgeon can not possibly get these tiny little guys. the trick is to get the thyroid cancer cells to feed on the radioactive iodine, not the regular iodine in the diet. you starve your body of the regular iodine, and the thyroid cancer cells are attracted to the radioactive iodine like moths to a flame. and you know how that turns out...

if a patient does not follow the low iodine diet , as instructed by their physician, it can cause severe consequences. perhaps there can be a recurrence elsewhere in the body. maybe another treatment of the I-131 would be necessary. when i read in some thyroid cancer forums that some people say, laughingly, that they have cheated on their diet, i want to scream. they have in fact cheated on themselves. the diet is a challenge, to be sure, but it is a drop in the bucket time-wise when compared to the rest of your life.

the diet usually begins two weeks before the treatment dose of I-131 and continues for a week or so after the dose when scans are usually  done. the amount of time after the dose of the I-131 is given and scans completed seems to vary. this is usually just a day or two- but check with your physician to be safe. the list to avoid is long, i will admit. i will mention just a few things here. iodized salt and sea salt must be avoided, but non-iodized salt is o.k. dairy products have to be avoided. this puzzled me at first. why? milk from any mammal( that is right- no goats milk allowed, though i am not sure why anyone would want to drink it) has a high concentration of iodine. also, commercial dairies use an antiseptic containing an  iodine product  to clean the area that is to be milked. so no milk or other dairy products are allowed on the low iodine diet. no chocolate is allowed ( big sad face here) because of the milk content. red colored ( especially  red dye #3) in  medicines and foods should be avoided. this was an odd one- that is why i mentioned it. i looked up the chemical  structure of red dye #3 and found that it contains iodine. mystery solved, i guess. and just a reminder, lipsticks and some other cosmetics contain red dye #3. it would be best to avoid these until after the treatment  as well.

 the list goes on and on, and that is why a patient needs a detailed list to refer to while on this diet. ms. gilletz recommends not eating out- because you can never be certain what exactly is in your food. and i do not mean that in a bad way, but even well meaning waitstaff and cooks may not realize the importance of sticking to the diet. another thing to omit while on the diet is multivitamins. most multivitamins contain iodine, and it would be safer  to omit them for a few weeks. there is a long list of items to avoid in packaged foods. i thought it was safer to just omit them while on the diet. generally, fresh fruits, vegetables and meats are o.k. unless products containing iodine are added to them. another tip: when you see " natural flavorings" on a label, it may include salt. and it would be the iodized salt that you should avoid.

the recipes in " the low iodine cookbook" are really good. i still use some of them, especially the blueberry muffin one. it takes some planning, preparation time and lets face it, some will power to successfully complete the low iodine diet. but it is so worth it. and besides, when you are able to get off the diet, that cheeseburger will probably be the best one that you have ever had.





Wednesday, March 21, 2018

" how does it feel? how does it feel....like a complete unknown, like a rolling stone, to be on your own, with no direction home, like a rolling stone." Like a rolling stone, by bob dylan

first off, i would like to say that i realize that i have used part of the lyrics of this song, like a rolling stone, by bob dylan before. it is just so appropriate when i write about salivary stones! i did some more research about salivary stones and frankly, there still  is not a lot of research on this subject. or the studies are small, and the results inconclusive. yes, it is known that larger doses of the I-131 given after thyroid cancer surgery are more likely to result in  salivary stones production. one theory is that scarring caused by the radiation, and resulting inflammation,  causes the salivary glands to narrow. some people think that the I-131 also causes reduced saliva production, which causes the saliva to also thicken. so you have thickened saliva and narrow saliva glands. yuck.

i have had both a kidney stone and i still struggle with salivary gland stones- a little over 7 years after my I-131 treatment. i can tell you from experience that both types of stones, while quite different, feel about the same on the pain scale. i should mention that along with salivary stones, I-131 has been associated with mouth dryness, taste alterations, infection, facial nerve involvement, cavities, yeast infections, and abnormal growth of tissue( both benign and cancerous).

salivary stones and salivary gland pain/swelling can occur right after treatment with the I-131. it can come on suddenly and then return months, even years later. my physician recommended that i use sour candies and drink plenty of water ( i did both) after my treatment dose of the I-131. do not confuse a treatment dose of I-131 with a diagnostic one! a diagnostic dose, which has not firmly been linked to salivary issues, is in the single digit milicuries range. a treatment dose starts at about 100 milicuries, and can go as high as 200-250 milicuries. there is a definite link, as i said in the first paragraph, in the occurrence of salivary stones and how much I-131 a patient receives. doses over 200milicuries are generally not recommended. i received 155 milicuries. one source i read said that most of the people who had trouble with salivary gland issues received from 100 to 150 milicuries. it has also been suggested that lowering the dose of the I-131 to the smallest possible effective dose is recommended. now, anyway. i understand that it is a double edge sword, so to speak. i, like many others, had an aggressive type of thyroid cancer and even a brilliant surgeon can not be expected to get all of the thyroid cancer cells. the I-131 is necessary, in my opinion- although there are those patients that refuse treatment- to prevent recurrence of thyroid cancer.

i recommend that patients having salivary stone issues see an ENT ( AKA, an otolaryngologist) for a definitive diagnosis. there are some surgical procedures that can be done, but in my opinion, if you opt for this, make sure that the ENT has done a plethora of these before you have this procedure done. there are nerves and other important stuff in this area, so you do not want to do more damage. what can you do now, at home, to cope with salivary stones/ inflammation/ swelling? here are some things that are recommended: warm compresses, gentle massage, sour lemonade( my favorite- make sure to use plenty of lemon juice and pulp), drink lots and lots of water, and for the pain, the ENT that i saw recommended ibuprofen. of course, some people can not take ibuprofen, due to stomach issues, interactions with other medications,etc, so be sure to check with your doctor or pharmacist ( smiley face here) before taking this medication.

hopefully, more information will be available on the treatment, and hopefully even the prevention of salivary gland pain and salivary stones. thyroid cancer is the fastest growing cancer in the US now. (getting  a thyroid cancer diagnosis has TRIPLED over the last three decades according to the american cancer society ). surely, more people are going to have salivary gland issues, so more research hopefully will be conducted into this side effect from the I-131 treatment. 

Wednesday, March 7, 2018

" been beat up, and battered around,...handle me with care; overexposed, commercialized; i've been uptight and made a mess, but i'll clean it up myself, i guess. oh the sweet smell of success, handle me with care. " handle me with care by the traveling wilburys

i just read an amazing article posted by the group, choose hope. the title of the article is " for patients fighting cancer, PTSD, is one more battle." the article went on to say that " new research shows that at least 20% of patients develop PTSD within six months of a cancer diagnosis. this is a rate similar to that of combat veterans."

wow! i personally think, and i do not have any concrete research to back this up, that the percentage is much higher than this. i feel this way, not only because i myself  have been struggling with PTSD, but several other  cancer patients that i know have had similar problems with PTSD. what we desperately need is a holistic treatment for cancer. we have great surgeons, oncologists, radiologists, and other health care professionals in this country.  but we are lacking in mental health services for cancer patients. in canada, there is a more holistic approach to cancer treatment. almost every cancer patient has the option to see a therapist who is trained to deal with PTSD. the article in choose hope said that while this service is  available, not every cancer patient in canada chose to accept it. even when holistic care is offered, there is still a stigma associated with needing care for mental health issues.

the above mentioned article, listed several examples of cancer patients with PTSD who have benefited from various treatments for anxiety and depression. one patient is a thyroid cancer patient, who has been dealing with the effects from having her thyroid removed due to cancer, for most of her adult life. so many things tag along with the big C. not only PTSD, but weight gain or loss, being on medications- sometimes for life- and dealing with the side effects of the very medications that keep us alive and functioning, just to mention a few cancer hanger-ons.

for me, the big deal is A N X I E T Y. i am not a depressed person, but boy, oh, boy, am i an anxious one. testing anxiety, and the fear of recurrence are forever in the rear view mirror of my life. unless it is a testing day, i can pretty much control my anxiety during the daylight hours. but come evening and bedtime- well, it is another story. i worry about my family should something happen to me, although i know that they would be fine. and every lump, bump, nauseous feeling or fever takes on tremendous proportions during the night hours. i bet at this point, you are marking me off your " would like to have a pj party at her house" list. i am certainly not perfect, but i am trying to feel more at ease. i know basically what to do to feel better. i am involved with crafts ( beeswax candle making to be exact), i am walking some ( exercise is so good for mental health as well as fitness), and i am on the waiting list for a Tai Chi class. i have been wanting to take Tai Chi for some time, but had been unable to find a class. this one, the one i am on the waiting list for, is offered at our local senior center. yes, i swallowed my pride, age is just a number-ha, and called the center. seems like there are lots of enlightened seniors that have beat me to the punch. but i am on the waiting list, as i said.

one of the other ways to treat PTSD is talk therapy. this has been the hardest subject to broach for me. i know it is not shameful to need some mental health counseling, but i have not been able to make myself do it. there i said it. ( or i wrote it) . out loud. talk therapy is said to be as effective as medication, when it comes to treating depression and anxiety. perhaps i can make some progress on this in the near future. i said i was not perfect. remember?

so, we cancer patients have been beat up and battered around. we really do need to be handled with some care. we are facing so much more than just surgery, chemo, and radiation. it is our life at stake here, and we need not only to take the best care of ourselves that  we can, but we need for our families and friends to understand what we are going through and be supportive. think of humpty dumpty. when he fell off that wall, he had many pieces that needed to be put back in place. i know that he did not get reassembled, so to speak, but i do believe that with the right holistic care, cancer patients can put back most of the pieces.

Tuesday, February 27, 2018

"every day is a winding road, i get a little bit closer. every day is a faded sign, i get a little bit closer to feeling fine." every day is a winding road, by Sheryl Crow

today was my six months check up for breast cancer. in may, i will officially be  a three year breast cancer survivor, and an eight year thyroid cancer survivor. my surgery dates were only 3 days, and five years, apart. may, as a month, has not been so good to me. it is quite the coincidence, really.

so, as usual, as my husband and i got closer to the oncology center, i tried to divert him into the far right lane, instead of the left one. the right lane leads to the interstate, and eventually( 3 or 4 hours later ) to the beach. the left lane leads to the oncology center. it is a long standing joke between my husband and me. well, an  almost  three year one. the very first time that i went  to the center  for my  first chemotherapy treatment, my husband almost fell for my attempts to run away to the beach. i will have to say that going there for my first treatment was one of the most terrifying experiences in my life- so far, anyway. the fear of the unknown, and the fact that i was aware that the first dose of chemotherapy is the strongest. it is the largest dose that they can give you,basically, that will save your life without killing you. your immune system is strongest before your first dose, of course. but no one is quite sure how anyone is going to react to the chemotherapy. my oncologist did reduce my dose slightly as we went along, and i knew what side effects that i would experience. that made the experience a little less terrifying.

oddly enough, and i am not the only person to experience this, i get nauseous when we pull into the parking lot. i had a lot of trouble with nausea and vomiting with my chemotherapy, and that all comes back to me, i suppose. another thing that bothers me, and this is sort of strange, is the smell of the hand sanitizer soap that the center uses. it is a violent reaction for me. i smell it when we come in the door, and of course i have to wash my hands a couple of times ( small bladder) before i get to leave the center. i am nauseous for  the rest of the day, and even though i shower when we get back home, i can smell that darned soap for a day or two.

also today, i saw a woman that reminded me of myself during my treatment. she was very pleasant (put on a happy face for family and friends) and she told the receptionist that she preferred wearing head scarves instead of wigs. that was me, as well. i learned to tie head scarves from watching a you- tube video, and got rather good at it. i did have some pre-tied scarves, but i much preferred tying my own. i wanted to go up to her and give her a hug, and ask her how she was really doing. but since  i did not want to scare the poor woman,  i just smiled at her.

so the bottom line is that i had a good check up. i did not get all of my blood work results today, but i am not expecting any problems. they will mail me a copy of everything in a few days. i keep a record of all of my tests, procedures, etc, in a three ring note book. that is about the best piece of advice that i can give anyone facing serious health issues. be informed, and know what has happened, and is happening to you. i have amazing doctors, but i am not their only patient. occasionally, test results have been lost, but i have had my own copy and that has actually come in very handy on more than one occasion.

my husband told me today that i will now  be " back to normal"( i should say my new normal ) for about the next five and one half months. then, the test anxiety, nausea, and moodiness will return. that said, i am getting a little stronger, a little tougher when test time rolls around. i guess i do get a little bit closer to feeling fine.