THE LAST 2 WEEKS

"I cannot bear it!" said the pewter soldier.
"I have shed pewter tears! It is too lonely and melancholy! Rather let me go to the wars and lose arms and legs! It would at least be a change. I cannot bear it any longer!"

i've spent the past 2 weeks waiting for test results.
the wait has been beyond hard
beyond stressful
beyond painful
and
it has been excruciatingly slow
and
agonizingly long

over the past several weeks i have had to have a plethora of tests done because of some seriously whacked and abnormal lab results.

the preliminary findings were indicative of a parathyroid adenoma.

adenoma is a fancy word for benign glandular tumor.

i was told that,
"90% of the time these lab findings are indicative of a parathyroid adenoma"

90%!!! yikes.
needless to say, with odds like that, and the fact that my doctor not only had 'the look' when he told me this (he had that same grim look when he delivered the lesion news - he'd never make it as a poker player!) but he also crossed the room and sat down beside me to tell me this, is it any wonder that i have spent the past 2 weeks on the verge of a nervous breakdown? trying to reconcile all of this in my mind, in my heart and given that i am still trying to process the whole shock of the unexpected brain lesion diagnosis - which still has me completely rattled, i have fully expected and feared the probability of an adenoma lurking in me.

lovely
a benign tumor
hanging out in my neck
Lyme, Lesions and Now a tumor?
lovely
i need that about as much as i need a shot in the head

i finally got the results on monday
and i pretty much had a nervous breakdown
bottomed out
hit the ground

i do NOT have tumor
i repeat
i do NOT have a tumor
and yes
i was hysterically upset by this news

rather then feel relief, i freaked
i cried
i raged
i sobbed and sobbed
i grieved

i've spent the past 2 weeks scared to be diagnosed with an ADDITIONAL condition and now i'm upset that i DON'T have it?

i am certifiable!
girl, give those lesions in your head a shake!
seriously!

pretty messed up, eh?
yup
not really rational thinking
but as messed up as it sounds,
at least that condition had a foreseeable, predictable END....and straightforward treatment...yes, i would have faced surgery but that would have quickly ELIMINATED the problem and rapidly relieved this barrage of new symptoms that i have been plagued with for the past 6 weeks...(my latest symptoms masterfully mimic the symptoms associated with parathyroid tumors)

but now
no, no, no
there is NO relief in sight
and i have had enough
enough
enough

everything, all of it,
my lesions
my symptoms
my pain
this never ending cycle of pain and disability
of madness, insanity and relentless agony
up and down, up and down, down, down
all of it, every last bit of it is
lyme
the disease that won't lie down and die
argh
wretched frustration
utter exhaustion
when will this end?
i am so sick and sad and tired of it all

despair
and
hope

hope
and
despair

breathe in hope
breathe out despair

what i know
and
what i feel
are 2 different things

act on what you know
not on what you feel

i feel the impossibility of fighting this disease
but
i know that God has promised to heal
and so i wait


breathe in hope
breathe out despair

A GOOD TEAM

I have a good team.
a stellar medical team.

Both DR A and DR H are amazing doctors.
i consider myself incredibly blessed to have these 2 docs on my team.

Considering all the controversy surrounding the diagnosis and treatment of LD, and then add to that the fact that it is an incredibly tricky and downright complicated disease to treat, well, right from the get go, I have KNOWN how very blessed i am to have to have these 2 doctors in my corner, working hard to get me well.

and now given all that is going on, i am becoming even more aware and appreciative of their level of expertise. God has placed me in the hands of 2 very wise men. Very wise albeit very different. DR A and DR H are pretty much polar opposites when it comes to personality. DR A is quiet, soft spoken, and compassionate. DR H is an interesting balance of jaw dropping 'wise guy' humor and confident renegade. But BOTH have a healthy respect for the profound and mysterious workings of the body and a staggering knowledge of medicine...both are incredibly gifted doctors.

i had appointments with both DR H (by phone) and DR A (in office) this week.

DR H has continued my 'cease - treatment order'. NO IV meds - only some orals to keep the LD and babesiosis in check while they try to discern what exactly is going on with me.
at this point, both doctors are more concerned with my abnormal lab results and what these results may or may not mean. currently, my brain lesions are taking a back burner to my lab results. according to DR H these are a much bigger and immediate concern than my brain. (ha ha)

as goes the recent norm around here, my second round of lab tests have come back with 'abnormal' findings.

there is some urgency with the investigation into what these results may or may not mean.
which means i'll be back at the lab tomorrow morning... my third visit in 10 days
(i am racking up frequent visitor points at the lab - too bad they don't have some sort of reward points program)

it has been upsetting to hear what these type of findings 'normally' mean in 'normal' people
however
i am not normal
that is well established
so i am just hoping that this will all turn out to be one of those wierd, unexplainable lyme things

in the mean time i am just trying to take one moment at a time
pray my way through the anxiety and tears
i am scared
BUT
i know that God is in control
He is the one who led me to these 2 incredible doctors
i am in good hands
divine hands and medical hands
yes, i have a good team!
it's God's good team!

and now on a lighter note,
speaking of teams,
today was sport's day at Avery and Parker's school.
and i was able to be there for part of it.

i am so happy about that.

and i am so happy that it was SUNNY and WARM today! i think this was the first year in the history of the 8 years of sports days that i have attended which didn't require either an umbrella or down filled parkas.

and i am so happy that neither Avery nor Parker's team won. phew! i question why they put siblings on opposite teams...that has the potential to seriously upset the sibling rivalry balance of power, you know...and it makes for some challenging and creative parental cheering!
phew! who'd have thought sport's day could be so strategic!


i am not so happy that Parker was disgusted with the day. he was on the 'losing' team for the 4th year in a row. losing is very hard when you are 9! however, the Pittsburg Penguins won the Stanley Cup tonight which completely redeemed the day for Parker.

i am not so happy that i didn't have a camera with me...fortunately my friend Tammy graciously managed to snap some shots of my children...in between capturing 6 of her own kids!
hopefully, she'll send me some of the pics soon...(ahem, yes that is a hint!) ...and then i can post them here....
but until those arrive,

here's some shots from last year:

"i'd run, but i'm frozen solid."

"ah, mom, i think my eyelids are frozen shut"

"oh no, i'm not cold at all!"

and while my young ones put their competitive spirits to the test, my eldest spent the morning 'competing' for a position within the Canadian Armed Forces. Yup. Taylor continues to work towards his goal of joining the military and pursuing a career with the Forces.

Earlier this month, we learned that his application had been accepted and he had passed the pre-selection process. Today, he spent 3 hours undergoing rigorous testing. somehow, despite the warm, balmy weather today, every time i said a little prayer for my eldest baby, a little shiver ran up my spine. A little shiver that is a mixture of pride, excitement, and fear. My baby could be a soldier some day soon.




Above all else, i am so thankful that we are all part of God's team...and can TRUST Him with the game plan!

ABNORMAL IS MY NEW NORM

since my ABNORMAL MRI results came back
abnormal has become my new norm

last week, i spent the better part of a morning in the lab
donating what seemed like half my blood
tube after tube drained from my arm

and now the test results are rolling in

ABNORMAL test results.

which is new.
most lymies look healthy on paper.
i'm used to feeling like death warmed over
yet
having labs and tests
steadily yield 'normal' results.

apparently, things have changed.
abnormal is the new norm

still not sure what any of it means...
probably won't know until all results are back

having more tests done today

i continue to be off of treatment
waiting to hear from DR H whether or when we will re-start.

i had some 'ok' days over the weekend which was a nice change...
given how horribly horrible the last several weeks have been
having a few bearable days actually felt strangely abnormal...but nice.

abnormal is my new norm

abnormal and worrisome
abnormal and anxious
abnormal and scary

abnormal and questioning
abnormal and waiting
abnormal and wondering

abnormal BUT trusting
abnormal BUT fearless (for momentary moments!)


abnormal is my new norm

Isaiah 43:1-2,5

¹ But now, this is what the LORD says—
he who created you,
he who formed you,
"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.

² When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze...

⁵ ...Do not be afraid, for I am with you

I WILL WALK BY FAITH

"we walk by faith, not by sight" - 2 cor 5:17

Blindsided. Shell shocked. Disbelief. Numb. Reeling.


MRI results came back today.

i have 2 lesions in my brain.


one in the frontal region

the second in the lateral ventricle

they are small but they are there

in there
in me
in my head


i am screaming a silent scream.

i was not remotely prepared to hear this.

nope.

not in a million years.

i knew it was a possibility but i didn't believe it would really be


what exactly IS a brain lesion? click here for a brief explanation


many questions but not many answers at this point.

couldn't think, couldn't ask, couldn't process


2.5 years ago, i had a 'clean' MRI
now i don't

how? why? now what?



all i can recall,
i will need follow up MRIs to track them

and thru the fog, i heard DR A solemnly say that while it is never good to find these things, these findings do support my lyme diagnosis. so this is good from that perspective.

GOOD?
oh, i know what he meant and it's ok he said that - he was authentically compassionate and solemn and gentle as he broke the news to us
but still
finding any part of this good?
easy for him to say...he's not the one with brain damage


left DR As office with graham in a state of shock

yup.
i am dazed and confused
(and have the scan to prove it!?!)

teetering on the brink of tears but too numb to cry

"this has to end. this has to end. i can't take it anymore."

one brief moment of hysteria
"get it out of my head. no. no. no. i don't understand this. i don't get it...and that has nothing to do with brain damage!"

i sob without tears
heart pounding in throat

search for peace amidst pounding, grieving heart

"oh, that's right. i don't have to get it. i'm not expected to."

i just have to

trust
trust
trust

found a lot of comfort at the praying for lymies site this week

tonight the words of this song were just what i needed to hear


WALK BY FAITH
click here if you'd like to listen to the song

Will I believe you when you say
Your hand will guide my every way
Will I receive the words You say
Every moment of every day

Well I will walk by faith
Even when I cannot see
because this broken road
Prepares Your will for me

Help me to RID my endless fears
You've been so faithful for all my years
With the one breath You make me new
Your grace covers all I do

yeah, yeah , yeah, yeah, ya

well i will walk by faith
even when i cannot see
because this broken road
prepares your will for me

Well I'm broken- but I still see Your face
Well You've spoken- pouring Your words of grace

Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me
(Repeat)
Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Hallelujah, hallelujah


I will walk by faith, I will walk by faith,
I will walk by faith
I will walk by faith, I will walk by faith,
I will walk by faith
I will walk by faith, I will walk by faith,
I will walk by faith


"now, FAITH is the reality of what is hoped for, the proof of what is not seen" -Heb 11:1