"don't move that limbo bar. you'll be a limbo star."--chubby checker

i find myself in an interesting, aggravating, and heart telling place place these days. limbo, if you will. limbo in the sense of being in an intermediate, transitional, or midway state or place, as defined by dictionary.com, or as the oxford dictionary defines, an uncertain period of awaiting a decision or resolution; an intermediate state or condition. 

the space i metamorphically occupy envelops me, framing my every thought and action, and yet i am not defined by the space that i occupy. rather, i choose to be developed by it...not be stringently or radically defined by it. i am a dynamic participant in a state of change. i am in a liminal space, where i am ever in a state of becoming, occupying a position at, or on both sides of, a boundary or threshold...ever on the cusp and in the middle. 

it's the space between.

let me break it down.

today i don't look like i have cancer, but i am sick enough that i need a transplant. i'm not well, but i am not sick. i am a cancer patient who doesn't define herself by just a disease; i am a cancer patient who defines herself as a person who has leukemia, but my being isn't defined by a diagnosis or a treatment protocol because it could change. again. 

but how do i identify? when i walk into the juravinski i don't look like other cancer patients. most days i have to remind myself i have cancer. having cancer has evolved into having a blood cancer, which evolved into needing chemo, which has evolved into needing a transplant, but for the most part i don't fit into any of the molds...i don't look like, i don't feel like, and yet...

i am...

...and i have...

...and i need...

i am not just a cancer patient. i have acute myeloid leukemia. a blood cancer that starts in my marrow and enters my blood stream.

cancer created a common fear and divide between having cancer and not having cancer, but leukemia made me unique and gave me the courage to fight. acute myeloid leukemia suddenly made me unique, setting me apart from a normal, healthy body, putting me in a new category of being. my cells are different than those of a healthy person and because of that i require treatment. my body has taken on a new definition of what it means to be well. what's normal for me has a new definition, and it has changed several times since i was diagnosed with leukemia because normal is relative...normalcy depends on everything else...but my new normal doesn't define me because again, the space is liminal and always changing. normal a little more than a year ago meant shortness of breath, bruising, difficulty doing anything physical, debilitating fatigue. normal after my diagnosis meant blood and platelet transfusions, antibiotics, chemo, hair loss, drug reactions, picc lines and showers with bags on my arm. normal after chemo meant a compromised immune system, fevers, infection, patchy hair growth, bottles of antibacterial wash, masks in public. normal after finding out i need a transplant means a new state of limbo because i am literally in an uncertain period of waiting...

i am...

...and i have...

...and i need...

when i got my diagnosis i accepted it. and yet acceptance--in the sense of understanding "why me?"--still evades me. but i accepted in the sense that i could accept that my body decided to stop cooperating with rules of how the body is supposed to operate...i had to accept that my being "fearfully and wonderfully made" by God now includes unhealthy white cells, setting me apart from what medicine and science and society recognize as being healthy.

the psalmist explains it this way, a passage i have referred to before, and a passage i sometimes struggle with: "You made all the delicate, inner parts of my body and knit me together in my mother’s womb. thank You for making me so wonderfully complex! Your workmanship is marvelous--how well i know it. You watched me as i was being formed in utter seclusion, as i was woven together in the dark of the womb. You saw me before i was born. every day of my life was recorded in Your book. every moment was laid out before a single day had passed." the struggle is one of not understanding God's workmanship, which for me now includes leukemia cells, and yet is marvelous if i accept how i have been designed. my wonderful complexity has taken on divergent complexity...a challenging one to accept.

my visceral reaction was never to blame God because i chose to accept that my wonderful complexity includes leukemia cells--not "why me?" but "now what?" He made me. He must have a reason for designing me the way He did. He must have a reason for bringing me to this place...a space no one would ever request to be in.

i chose to accept that my leukemia came from somewhere, or i was born with it. i accept that my health care team can detect leukemia cells in my body, except i don't accept that it came from nowhere. "it didn't come from anywhere" they told me. they told me i didn't do anything to get leukemia and i couldn't have done anything to prevent it, but the nagging question remains...

where did it come from? it had to come from somewhere. God must have allowed it to happen. or i was born with it, which means God knew. and if i was born with it, how can it be corrected? should it be corrected? what's normal now? well, it can't be defined in the way we define normalcy, or i wouldn't have cancer. i wouldn't be a leukemia patient. i don't accept that cancer is normal, but in so doing, i imply that God's workmanship in me is somehow flawed because cancer wasn't His original design, especially if i was made in His image. but i haven't blamed God for allowing this to happen or making me this way. instead, i have chosen to accept the various states  to which i have been brought.

my diagnosis carried with it several months of scheduled chemotherapy treatments which, while helpful to kill most of the leukemia cells, didn't bring me to a state of remission, but to this pre-transplant state.

the leukemia patient becomes the transplant patient because her otherwise very healthy body and organs can't survive on unhealthy blood. and for the second time i stand before the limbo stick, only this time the words aren't "you have acute myeloid leukemia," but "you need a bone marrow transplant." in between. again. not defined by the state and place and space i am...but being developed by it.

and so i bend backward from the knees and move shuffling forward under the horizontal bar that is before me, hoping as it is lowered that i can successfully pass from one state to the other, morphing from the space on this side of the bar, to the space on the other side of the bar, but not before being squarely in the middle of transition, as i evolve from this state to the next, never defined by the state, but being ever developed by it while occupying a position at, or on both sides of the threshold.

one philosopher put it this way: "the bud disappears when the blossom breaks through, and we might say that the former is refuted by the latter; in the same way when the fruit comes, the blossom may be explained to be a false form of the plant's existence, for the fruit appears as its true nature in place of the blossom. the ceaseless activity of their own inherent nature makes these stages moments of an organic unity, where they not merely do not contradict one another, but where one is as necessary as the other; and constitutes thereby the life of the whole."

the stages i find myself are not what define me, because the stages change, but the stages are necessary and constitutional for the development of who i am. the stages are spaces between. just like being on this or that side of the limbo stick, or in the process of passing from stage to stage, as the bud disappears, and the blossom gives way to the fruit.

and as i pause under the limbo stick, aware of where i have come from, and knowing my goal is to make it to the other side, i observe what seems to be outside of my passage, realizing that it is the limbo stick that is moving me from one state to the other, not only instrumental but fundamental to my becoming.

the space between...hardly limiting. merely liminal. as i stand on this side, from here to there. and as i look back, from there to here...

the good bad news

yesterday hollie and i went for the results of my last bone marrow test, six months plus a day after my diagnosis. for reasons i don't get, i didn't get the result of remission that i had hoped for & 1000s have prayed for...not yet, at least :-)

dr. leber, my hematologist walked in the room with his nurse, sat down, touched my shoulder & said, "we have mixed news for you today---'good' bad news."

bad news was all i heard at first.

he went on to explain that the leukemia cells are still showing 1:10,000 after running a complex test with a fancy machine that shows cells not visible in any of the other tests they ran on my sample. in fact, 5 years ago he said he would have been walking in the room & declaring me to be in remission based on just a couple of tests that are run with the bone marrow & blood sample. however, due to medical advancements & the development of new & intricate technology, cancer cells not previously able to be seen can now be detected. 5 years ago, i would have walked out of the room 'in remission,' but eventually the cells would have reproduced to the point where they were again visible in the only tests available at the time. maybe it would have taken 6 months, maybe 2 years...but eventually--because there were so many of them--they would be visible in the way they are today in much smaller numbers with this fancy machine & test...unless, of course, i got a miracle making the cells invisible forever :-)

dr. leber went on to explain that the good news is that when i first presented 6 months ago, my cancer cells were the size of a volleyball in terms of volume. in fact, i pretty much had more cancer cells in my body than i had good cells at the time. now, after 4 rounds of chemo, the cancer cells are the size of the tip of a ballpoint pen. he told me that the leukemia is 'manageable' but that his preference would be to proceed to a transplant since the small percentage persists & could reproduce rapidly or gradually. he said it's like the cancer cells have a hard shell on them that the chemo couldn't penetrate or break down. by 'managing' the leukemia we could keep the counts under control but i would still have cancer in my body. this isn't the option he's interested in pursuing for obvious reasons. me either, actually :-)

next, dr. leber explained that it's good news that i have a full sibling. his transplant coordinator will be calling my sister, directing her where to go to give a sample to determine if she's my molecular match. there's a 1 in 4 chance she will be since we are full siblings. the sample will be sent here where it will be tested by dr. leber's team. this will take 2-3 weeks. there are 10 criteria needed for a perfect match; 9 can be worked with. if my sister isn't a 9 or greater, dr. leber will then go to the worldwide bank, where there are millions & millions of donors. my odds of there being a match are good since i'm caucasian, but hopefully my sister will be the one who best matches me. our mom used to have matching dresses made for my sister & me; now we are praying that God made us with the matching blood :-)

there's a great deal i don't know about the whole transplant process because dr. leber says it will be 2-3 months before the transplant, but possibly sooner if my sister is a match. he assured me that we will talk about it all, & there's lots to talk about in terms of the process that will all get addressed. i do know from the literature i was given early on that a transplant means receiving healthy blood cells from a donor, and is more likely to prevent relapse & cure leukemia than just chemotherapy. so far, while i have done very well, there's more work to do. & i believe the work is still going on inside of me. it's also taking place outside of me, as a donor is searched for & my healthcare team collects all the pieces & puts them in place for my transplant. that's the good news. i will get my miracle yet, even if God decides to use medicine & treatment.

i have decided to not stress about the details because this is not my problem. & i don't mean that in a nonchalant or cavalier way, or in a way that i won't acknowledge that i need to make wise choices in terms of what i feed body & the care i take to look after myself, even though with my type of leukemia i didn't do anything to get it & i couldn't have done anything to prevent it. i still acknowledge that there's more i can do to encourage better health. but when i say this isn't my problem, i mean that i am once again reminding myself of God's ability in all of this. do i get it? not at all. but He does. He designed me & He knows what He's doing in me. the psalmist put it this way: "You shaped me first inside, then out; You formed me in my mother's womb. i thank you, God...body & soul, i am marvelously made!...You know me inside & out, you know every bone in my body; You know exactly how i was made, bit by bit, how i was sculpted from nothing into something. like an open book, You watched me grow from conception to birth; all the stages of my life were spread before You, the days of my life all prepared before i'd even lived one day."

bottom line, God knows every bone in my body. therefore, He knows what's going on in my marrow & in my blood. & either with or without science & medicine, He's healing me. one cell at a time. in the way He knows is best for me & my future.

so, good bad news. that's better than bad good news. & it's certainly better than just bad news, even if it's not as great as only good news. but the good news is that God's got this. no matter what. has He healed me in the way i want? not yet. will He? i don't know, but i do know that doesn't mean He doesn't know what He's doing in my body & throughout this process. & really, the news was only bad yesterday because my miracle hasn't quite happened the way we all imagined. but that doesn't mean it's not happening. not for one second. every cell is accounted for, even if they're not all visible to dr. leber & his team :-)

so celebrate with me despite yesterday's 'bad' news, because the good news is that my remission is in God's capable Hand, & that's a blog entry for another time!!! :-)

God's still got this!!!

6 months ago today, at 7 pm in the evening, i was told i have acute myeloid leukemia.

tomorrow i go for my last bone marrow test results.

i don't know where the time has gone. it's crazy to me. i looked at 3 pictures of myself tonight spanning a couple years: one with big, curly hair--pre-cancer; one with no hair--mid-cancer treatment; and one with growing hair--post-chemo treatment. i couldn't help but think about the passage of time while at the same time wondering how i got here...how i have gotten through this...

there's a verse in the bible that says "time and chance happens to all." i still believe that my times are in God's Hand. my yesterday and all its mistakes are gone. my present is a gift. and tomorrow will take care of itself, with God's help. the biblical writer explains: "the fastest runner doesn’t always win the race, and the strongest warrior doesn’t always win the battle. the wise sometimes go hungry, and the skillful are not necessarily wealthy. and those who are educated don’t always lead successful lives. it is all decided by chance, by being in the right place at the right time."

i believe i am in God's place, in God's time--the right place and right time indeed...He knows best...all my fears, questions, victories...and even though i make all kinds of mistakes, He doesn't.   

i am believing for remission results tomorrow. more chemo or a transplant are also medical possibilities...but i am holding out for the miraculous...

and no matter what, God's still got this.

all the way.

i don't believe it!?! song selection means something!?!

so, i've had some time on my hands :-) back in the day, when it first began, i was an american idol fan. a few seasons in, i lost interest and only watched the audition highlights--like the 'best of' or 'worst of' episodes. this season i have been watching, because as i said, i have had some time on my hands and it gives me something to do and follow. i have become a fan because of the judges and their feedback, the performances, the singing and musical aspects, of course and--oddly enough--the song selections.

this past week, one of my audition favourites (i had 2, and they are both in the final 5--do i have an ear for music and an eye for star quality, or what?!? :-) ) made an impressive song selection by choosing to sing a song for which one of the judges is famous. the contestant sang the song almost effortlessly and to rave reviews, unlike some other contestants who severally and severely got critiqued for their song selection, in addition to their interpretation and performance. this season, the contestants seem to have often struggled with song selection and are reminded that the song matters and choosing should not be taken lightly. the song should showcase all the unique qualities of a singer's voice, indeed, but there should also be a connection. the audience should be able to tell what the song means to the singer, even if they don't know all the intimate details associated to the singer's impression of the song.

now, because you're no doubt wondering, the song was mariah carey and whitney houston's "when you believe." the contestant sang a very convincing rendition, nailing it, knocking it out of the park, leaving the other contestants in her wake. it actually brought me to tears.

which brings me to my interest and point of view.

let me explain.

there are lots of analogies out there about life and living. i often use the journey one and taking every stage in stride, or the book one and writing chapters...i'm sure you understand my point...

in this entry i'm employing the analogy that life is a song you sing. let's ignore the fact that every day could realistically be a different song (because let's be honest, that is the beauty and power of music), and assume today, right now, in this moment like it's your last, like your staying in the contest depends on the song you select and sing, and that there's one song for you to sing...for me (for the past few days) it would be "there can be miracles." the song addresses hope versus doubt (because let's be honest, sometimes we wonder if our prayers are being heard and if they will be answered, looking for proof of the same), courage versus fear (because let's be honest, sometimes i think we are afraid to ask for exactly what we want for fear of rejection, or that we will get some other modified version of what we want), resilience versus frailty (because let's be honest, sometimes we feel like we can't possibly bear it). it espouses faith and belief in the face of uncertainty and emotional upheaval. it suggests that your miracle already exists and it's yours when you believe. not if. when.

i think God has given me exactly the right amount of faith and belief to experience the miraculous. do  i believe miracles happen because of me? no, i believe God has got the miraculous covered, but He waits for evidence of faith and belief in people, however small it may seem to me. i don't think God needs much to work with...but He does want some proof that we believe...not because we consider ourselves exemplary christians or good people, but because we realize this isn't something we can do on our on. i believe i can be made well and whole...not because i can do it...but because i believe God can. there are lots of promises presented to us...not in a carrot on a stick sort of way...but in a way that let's a person know in their darkest hour there is still hope, faith, belief and there are results for engaging in any or all of them...and on the days we can't do it for ourselves, someone can believe for us. i know.

"they don't always happen when you ask,

and it's easy to give in to your fears.

but when you're blinded by your pain--

can't see your way clear through the rain--

a small, but still, resilient voice
says help is very near."

so, remember: the song you select today matters.. it matters to your health, it matters to your mind, it matters to your audience, it matters to your experience of life...and it might even matter to your survival...and whether you are on the world stage or in the quiet of your secret place, you've gotta believe it.

because there is "in our hearts a hopeful song we barely understood. now we are not afraid although we know there's much to fear. we were moving mountains long before we knew we could. there can be miracles when you believe. though hope is frail, it's hard to kill."

oh, and by the way...faith beats fear every time.

so believe it. 

and sing accordingly.

:-)