look ma, i've got my very own blog!

"and all the science i don't understand... is just my job five days a week." --elton john, "rocket man"

Friday, January 01, 2010

happy new year!

i mean, when all is said and done, 2009 was probably an 8. yes, there were definitely some really bad times, and some times that i really, really wish had never happened. and yet, in the end, i feel like i got some pretty real and vivid perspective this year, and i feel like i really feel thankful for my totally awesome life, and for life in general. i am so very lucky.

and i definitely have hope for 2010. i have hope that my parathyroids will start working again and allow me to return to a (somewhat) normal life again. i have hope that i will be a tiny bit more certain of where i am headed and what i will do with myself as a grown person. i have hope for new relationships and restoration of old ones. i have so very much hope that the lord has amazing things waiting for me. and you.

and so i wish you the happiest of new years. 2010 is looking pretty great so far. i look forward to the new year with you, friends.

Saturday, December 12, 2009

like a ballerina

i love this time of the day. this time of the year a lot of the day looks like this time of day, with the light at such a steep and sleepy slant that dusk goes on for hours. from my seat i can see the snowy mountains to the east in that soft orange light and it is beautiful.

it is hard for me to believe that christmas is in 13 days. my whole family had other plans for thanksgiving, so i celebrated that holiday with others. now it looks like the same is true for christmas too. i'm starting to think i need to find a new family for these things. all my friends are leaving too, or celebrating with their own families. i kind of wish i were working so i at would at least have something to do. maybe that's why i can't come up with any good presents. who really cares if we won't even be together?

so it turns out that "graceful" does not describe me at all.

i am in the process of looking for a new endocrinologist. i can't take dr sunshine anymore. nobody should talk to me like he does, and i certainly should not pay someone so much to do so.

he continues to tell me that i am permanently broken and that my parathyroids will never get better. i must say, his evidence this time was more compelling than the last (despite my calcium being extremely low, my pth was not even measurable); yet i still do not believe that he can definitively say that i will never get better. he says he wants to be honest with me, which i certainly do appreciate. but i think that him saying that i will never get better is just as dishonest as him saying that i definitely will. how does he know? doesn't he know, after all of this time as a doctor, that every body is different, and sometimes improbable things can happen, and numbers can change all the time? i feel like the more i'm alive and the more i work in health care the more real the impractical and unexpected becomes. i guess in medicine it seems to usually be in a bad way... but why does it always have to be?

and besides the fact that he very well might be wrong, i also feel like, even if he's not, he could at least let me think that he might be for a little while longer. i mean, it's been a rough couple of months. there has been a lot of bad news and things to adjust to, and even if i never do get better and this really is permanent, it would be nice to have a bit more time to get used to some of the other changes before having to accept one more. how hard is it to say that, even though it doesn't look good right now, nothing is certain. keep hoping. because i'm going to anyway whether or not you want me to you big jerk.

see, graceful...

Friday, December 04, 2009

science is crazy.
the things that people have discovered and imagined and come up with never cease to amaze me. i mean, the whole radioactive iodine creation? amazing! who figured that shit out? and who in the world tested it? i saw an ad looking for volunteers for an HIV vaccine study in the paper the other day. can you imagine how awesome that would be if it really works? but how in the world do you test this, and what happens to the volunteers if it doesn't work?

part of my "new normal" is getting blood drawn every few weeks. so far this has been mostly to check my aforementioned pitiful calcium level and a few other hormone and blood component levels. but today's labs are bigger than that. today's labs will tell me if i still have cancer or not. today's labs will tell me if i have to have more radiation or not.

it is amazing to me that one small vial of blood can tell me all of that. i mean, i'm being a little bit dramatic here. the thing about all of this is that it's really just a whole lot of waiting. we'll do this test and call with the results next week. we'll do this biopsy and let you know. we'll schedule the surgery and see what we find. we'll set you up with a specialist in six weeks. we'll give you this dose and see how you feel. we'll draw labs and check your calcium levels. we'll draw labs and check your pth levels, and your thyroxine levels, and your thyroglobulin levels... if they look good this time it's no guarantee they will next time, or the time after, or the time after...

i would say that i feel like i'm healed, like all is well with me. but i never felt like i had cancer in the first place.

no matter what happens i am not looking forward to seeing my endocrinologist, whom i have come to refer to as 'dr. sunshine.' good news from him sounds like a death sentence, so i can't imagine how he presents bad news. hopefully i won't have to find out... my appointment with him is tuesday at noon. you know, it's crazy how such tiny amounts of time can have such huge and longstanding impacts on our lives. how long does it take to say "...and it is cancer."? and how long does that sentence live on?

if you are the praying type feel free to ask that i might receive whatever news he has for me gracefully. a number of people have said to me that they don't understand what God is doing, why he is doing all of this. well me neither. but i have never felt like he is doing it to me, and i have never felt how nice he is until all of this. no one has ever been as nice to me as he has during this silly stupid time, and so i will not ask him why but simply say thanks. and keep asking for help.

Thursday, December 03, 2009

i feel it in my fingers, i feel it in my toes

in seven days it will be three months since i had surgery. it's weird, sometimes i forget that even really happened. but on days like today i have the lingering reminder that i really did (do?) have cancer, and i really was cut open, and a part of me truly was removed.

all of the studies i have read--and i have read many--say that less than 1% of people have permanent parathyroid damage after thyroidectomy. and most of these people were operated on by an unexperienced surgeon who didn't know what they were doing. when you look at it that way, all the odds are in my favor.
and yet the studies also say that normal calcium levels returned within a few weeks, and parathyroid hormone levels normalized within 3-6 months. i am very nearly at 3 months. and nothing for me is normal.

so what do i think about all of this... do i think that my endocrinologist is just a pessimist who tends to see the negative and is being overly hasty in diagnosing me as permanently broken? do i believe my surgeon who tells me that it can take up to a year-maybe more-to really balance back out for good?
i would like to.
and most days i continue to believe that any God who can make the entire world and everything in it is certainly able to fix my three (remaining) tiny parathyroids.
but it is hard to be positive and believe these things when it feels like my veins are pumping soda instead of blood; when my hands and arms and legs continue to go numb randomly; when everyone else i have talked with got better so much quicker.

one day all of this will either be fixed or be normal. and i promise, one day i will stop talking about it.

it's weird to think about all of the crazy shit that's happened these last few months: being held together with staples, eating hundreds of tums, swallowing the big black radioactive pill-you know, having cancer...
anyway, i'm boring myself again. so that's all for now.

Tuesday, November 17, 2009

thursday 3 september, 2009:

one week till the chop shop...
yesterday dr. b. said he might make a long horizontal incision across my neck all the way to the node on my left side, making what i thought would be a 2-3 inch incision into a 6-8 inch one instead. we'll see.

it's strange to think that one day i'll read this looking backwards, already knowing what happened. right now i can only look ahead and wonder. i'm pretty nervous about this whole business. i'm feeling pretty sad and anxious these days. i'm trying to let it be, just let myself feel what it feels like right now in the middle of all of this. but i also just want to ignore it, push it away, distract myself. and so i keep very busy and sleep very little.

i've been riding my motorcycle a lot, and monday was boating and swimming with the school gang. bob and annie and andy are in town this week, so that's been really fun. today we picked blackberries at magnuson and i made a pie for everyone. i love picking blackberries. it always reminds me of the time michele and renea and i made jam the first year we were friends.

life is so funny, so strange. every minute is so full of potential; sometimes i wish i didn't have to sleep so i could be present the whole time i'm alive, not miss a single thing.

i hope i'm a good patient. i hope i don't embarrass myself and say something crazy under anesthesia. i hope i'm nice to the nurses. i hope everything goes well...

Wednesday, November 11, 2009


so saturday is my last night shift. last night was my last night with some of my favorite nurses/people, and i will admit, it felt very sad. i mean, i know that working nights is bad for me, and i know that i have to at least try working during the day and see if it's any better. but i have to say that honestly, the only thing i have truly liked about my job for the past many months is the people i work with. it says a lot about them that staying up all night long, cleaning up barf and poo and listening to screaming children and disgruntled parents is made bearable--almost fun, even (sometimes)--simply by sharing it with them. they have been the reason i did not quit nursing a long time ago, and the reason that i am as good at my job as i am. michele reminded me that i didn't really like any of them for a while either (sorry guys), and so maybe i'll wind up liking some of the day people as much as my night crew. but i'm not so sure about that. it's not that there aren't ones and twos that i like and will come to like a lot; it's just that, as a whole, i know it will not be as good. i know that there will always be the outliers, the negative nancies, the political strategists, the disgruntled middle-aged women who are so burnt out they should have quit when they were my age...

i hope that i can bring more of the night shift helpy mentality to days. one of my favorite parts of working nights is that everyone is always so willing to lend a hand, to take a minute even if they are insanely busy to help another nurse with something they can't do by themselves, or talk through a tricky situation. it's nice to know they've always got my back, and to get theirs when needed. that's what it's about.

and so it is with mixed emotions that i transition back to the day world, the land of the living, the land of sunshine and honey. i am thankful to you, ladies and gentlemen of the night, who have been my teachers and peers and support and friends over this past year. you will always have a special place in my heart, for no one else can really ever know what we have shared. and i will feel a little bit left out when i arrive in the morning, knowing you shared a 4am dance party, or powered through the six o'clock weirds, and will be a little bit sad when i leave you to go home to my bed at night.

Friday, November 06, 2009


over the last few months i have been having what i will call, for lack of a better term, an inner struggle. it has just been such a weird time... part of me is still adamant about how all of this really, in the grand scheme of things, is no big deal. yes, there have been some moments where i have been emotional, or when things physically were terrible, or times that were just plain weird. but i know that people go through so very much worse, and even in my worst times i just know that i am so very lucky.

and so i struggle with what to share, and how to share it. that link i posted a little while back of the story on npr was sort of a catalyst for me. it got me connected to a number of people's cancer blogs, which were/have been extremely helpful for me as this time has unfolded. it is odd how total strangers can sometimes understand and relate to things in your life better than even your closest people. part of me wanted to post things on here that would maybe wind up helping someone else one day like those blogs helped me--but then again arose the entire internal debate about whether or not what i have been going through is actually worth talking about. i don't want to whine, or complain, or be a total wimp about things that are really not a very big deal.

i have clearly thought about all of this way more than i need to or should. and what i have decided is that, whatever is or is not true about the degree of badness of this situation, it has still produced many stories that are worth telling. if they get boring or seem whiny to you, i give you my full permission to pretend that i never wrote them.

i am not sure in what order i will tell my stories. chronological seems sensical, though i tend to think of them much more randomly. regardless, they'll be here soon.