Saturday, November 1, 2014

".....i look at the world and i notice it turning, while my guitar gently weeps. with every mistake, we must surely be learning, still my guitar gently weeps. .... i look at you all see the love that is sleeping, while my guitar gently weeps. " while my guitar gently weeps, by my favorite, and the best( in my opinion) beatle- george harrison

i have made my share of mistakes with my thyroid cancer.( the main one being, why did i wait 5 years to change doctors when i knew in my heart that i was sick and nothing was being done about it?) that is why i am so passionate and persistent when i know that someone else is struggling with questions about their own treatment. things like, " do i need surgery?" " do i need the RAI( basically, radioactive chemotherapy) afterwards?" " what kind of thyroid medication do i need going forward?" " how often do i need to be tested afterwards?". these are difficult questions, and certainly depend on the individual. there are  so many variables to consider.

 i think that most everyone would agree that when they find out that they have thyroid cancer they accept the fact that they need the surgery. but i know two people  who rushed into surgery and as a result have had major problems with scarring, and repeat surgeries. one thing that my surgeon was adamant about, thank goodness, was the fact that it was ALL coming out( along with two parathyroids and 11 lymph nodes, but hey, who is counting?). i asked him if he could just take out " the cancerous side" and he said absolutely not! and he was correct- the other side of my thyroid had a cancerous tumor also, so small that it was not seen on ultrasound so not biopsied until after  my surgery.that would have meant, as it did for the two people that i mentioned, that i would have had to be opened up twice, and go through everything again. no thanks- once was enough. bottom line, if you have thyroid cancer, please have it all removed and by someone who has done many thyroid cancer surgeries, i.e. they  know what the heck they are doing!

RAI seems to be a hot topic. no pun intended. one issue associated with the RAI is that some people opt out of having it. my endocrinologist said that " even the most brilliant surgeon can not get all of the thyroid cancer cells". ( when i told my surgeon this, his big old ego did not like it very much. oh,well). another factor in the decision making process is,  has the cancer spread? are the tumors encapsulated? in my case, it was yes to the first ( lymphatic system) and no to the second ( my tumors were unencapsulated and had caused such a spill that i doubt even  the most talented hazmat team could have mopped it up ) . that made the decision easier for me. in other words, i would have been  rather foolhardy not to have had  it. now, RAI is not without side effects. one well meaning person told me " oh you are so lucky to be able to have this! just one little pill, it kills all the thyroid cancer cells, and no side effects!" IF ONLY. yes, it does kill a lot of  the thyroid cancer cells .but some of them, the rogue ones ( the sarah palin ones, if you will), decide to take a vacation somewhere else in your body- their favorite locations being the lungs and bones. the side effects that i personally had from my RAI dose( i had a rather large one- 155 millicuries, 100 millicuries being the usual) were nausea after the dose, headache and general tiredness. after about a year, i started having salivary gland issues. i have had trouble with salivary stones- red, painful swelling in the jaw area. sour lemon candy, lemonade, heat and ibuprofen help, and i have not yet gotten rid of them. i just accept that it is something that i may have to deal with long term. if i had know all of this before, would i have still had the RAI? yes, definitely.

if you do not have a thyroid gland, you have to supplement with a thyroid replacement hormone pill. some well meaning people( they live in the same tribe, i think) have said " oh, wow, since you do not have a thyroid, you do not have to take any medicine now, right?" i used to try to give a short science  lesson to these well meaning people, but when their eyes glassed over, i just decided that i needed to say, well actually i am on a thyroid supplement for life. as for the debate over name brand, generic, naturally derived,etc., i am pretty sick of hearing about this. for me, levoxyl, a brand name, has
worked best. i have tried all of them( brand, naturally derived, generic,etc )  as well as the cytomel. the cytomel and levoxyl combo  worked well for me for a time. this was before i knew that i had cancer. i needed an afternoon dose of the cytomel to just get through the day. but now, i am on a bigger dose of the levoxyl, a suppression dose, so i do not need the cytomel. at my six months visit with my endo ( last month) my endo said that when i did not need to be suppressed any more, if that time ever  comes, she would prescribe some cytomel for me since she will be going down on my levoxyl dose. i think that everyone is different and one size does not fit all. i have said this before. if armour works best for you, great! if you love synthroid, great! it sort of reminds me of the great "mommy debate". the "stay at homers"versus the" moms who work". it is an individual decision and we should not judge others on what they decide works best for them.

the "how often do i need to be tested?" question depends on the individual, the severity of the disease, and the physician. i think that this question should ultimately  be answered by the patient, though. how comfortable are you with your care after the surgery, RAI, scans,etc. i try to be somewhere in the middle of" neurotic"and" could care less". for me, although the six months testing is nerve racking, it makes the most sense in my case. i feel that my doctor is giving me excellent care, and with a 35% recurrence rate associated with my cancer, i hope that if it does come back, it can be caught early and treated successfully.

i guess that one line of this wonderful song does apply to my blog today: " with every mistake, we must surely be learning". it is good to learn from your mistakes, make better decisions, and move on. no matter what the tribe of well meaning people may think.

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