Hello All!
I’ve been woefully remiss in posting an update, or as my
sister might say, I’ve been “an unfaithful tomato”. Whatever the vernacular, it’s
past time I share my news with you – as I know and understand it.
I’ve held off sharing it in a widespread fashion for a few
reasons, some of which, likely only make sense to me. I’ve had two major doctor
appointments – one with my Oncologist and the other with my Transplant
Nephrologist in the last few weeks. I’ve had several other appointments, tests
and diagnostics, but these two appointments have been the most enlightening.
And as incoming results illuminates some answers, new questions threaten to
obscure my clarity. I’ve needed time to sort through everything I’ve been told
and try to make sense of it all. The diagnosis of PTLD (Post-Transplant
Lymphoproliferative Disorder) has me sometimes befuddled, often confused, occasionally
anxious and most recently frustrated. But I’m an equal opportunist and like
variety, so sometimes I switch things up and throw in a combo platter of
perplexed and bewildered with a smattering of totally-over-it into the emotions
mix. Yep – my mind is a beautiful tangle at times.
I have good news.
No, scratch that. I have great
news - as one of my Sunday school kids
aptly pointed out during our praise and prayer share time recently (leave it to
a tween to put me in my place).
I want to stop right there. I want to revel in the glow of
God’s goodness, blessings, rainbows and lollipops. But therein lies the rub…. I
hate being offered the choice – “do you want the good news or bad news first”.
It’s like Sophie’s choice – rip the bad news band aid off first and be unable
to focus on the good stuff or have the good news overshadowed with the cloud of
impending bad news hanging over you. Rain, meet parade. Good hair day, meet
unruly frizz. I wanna let the good stuff shine – let it sink in – savor it. So
what’s a person to do when they have both the rain and parade, the hair-do and
the hair-don’t? You see my dilemma (or
at least – a glimpse into the tangle which is my thoughts).
I have stellar news, and I have
less-than-stellar news (I refuse to call it bad). And, on the occasions I’ve
shared it with others I’ve elicited gleeful squeals and confused stares and one
of the last times I shared it – I was questioned if I was victim of a
misdiagnosis or privy to a miracle.
Well folks… it’s the latter. I’ve received word that I am cancer free! (Cue gleeful
squeals….. and confused stares).
To God be the glory! I am humbled, awed and ever-so-grateful
that I am on the receiving end of this gift of healing – as well as the gift of
your prayers on my behalf! All praise and honor goes to the Lord Jesus Christ –
Great Physician Extraordinaire! But my thanks goes out to all of my support team
as well – my family, friends, and strangers – those of you who have faithfully
brought my infirmities before our Father. Thank you! Your prayers and Christ’s
reply have blessed me beyond anything I deserve!
I met with my Oncologist to review the results of my most
recent biopsies. The pathology shows that the previous colonization of lymphoma
cells are no longer active, having been replaced with Lymphoid Hyperplasia.
When I said I get a lot of confused stares in response to my news I wasn’t
trying to insult anyone’s intelligence, it’s just that… I can relate. As I
faced my doctor’s impassive features, I was giving my best clueless impression.
I’m sure my blank expression would have made me a shoo-in for a leading role in
a Clueless + Dumb & Dumber spinoff. I’m not sure what I expected his response to
such good news to be, (grins and giggles, back flips) a smile, at least (and
balloons and confetti), I mean – this is
worth celebrating! I made a point to
clarify (and wipe the ‘duh’ expression from my features) – Yes, my pathology
confirms that, as of now, I am cancer free!
**I think I should mention that this post has been a
work-in-progress for over a week and rolling around in my head since I got this
news (along with a few marbles I’ve managed to retain). Maybe you’re like my
mom – wondering why I’m not doing a happy dance. If anything was ever
blog-worthy – surely this news is; “I’m Cancer Free” would be snazzily
punctuated on FB with those brilliant color backgrounds (which I rarely get to
use because I’m too wordy). I’ve been processing. Because while this news is
worth sharing, PTLD is a spectrum disorder that’s hard for me to fully wrap my
head around. I don’t tweet (because of my aforementioned long-windedness) but
if I did, I’d have to use my friend’s suggestion – hashtag its-good-news-but-its-complicated.
Needless to say, the caveat that accompanies my good news has me feeling like
my dance partner stomped on my toes.**
As I was preparing to leave the Oncology office my doctor
left me with this one warning, “Do not,
under any circumstances resume your immunosuppressive medications.”
Now, I’m normally a very agreeable sort of gal, rarely given
to open confrontation or defiantly shirking the rules. But I do like to know my
boundaries, my borderers, my wiggle room.
And in this case, this caveat seemed pretty restrictive.
I fished for a loophole in his ultimatum and each time, he
shut me down; explaining that to resume my previous course of immunosuppressive
therapy or otherwise add-to or increase my level of immune suppression would
likely reignite the currently inactive lymphoma cells.
So, the news, while not earth shaking, was like a little
humidity for flat-ironed naturally curly har - it put a kink in my, otherwise,
good day.
And then, not 30 minutes later (no exaggeration) my
Transplant Nephrologist called to congratulate me on my favorable cancer
results…. and instruct me to resume taking the drug I’d discontinued as part of
my PTLD treatment regimen. What?!?! Can you say ‘get on the same page’?
So here’s the long and short of it. My lymphoma diagnosis
is specific to my transplant. It has responded well to the reduction in
immunosuppressive therapy. But, as it’s a spectral disorder, I still have a presence
of cells (lymphoid hyperplasia), that, at present, are inactive (PTL). What's
complex is that, while the lessened immune suppression allowed my body to
combat the cancer, it's allowed my immune system to gain a toe-hold. Like eager
hunting dogs, long held in captivity, loosed for the first time, my immune
system is alerting my body to the presence of a transplanted kidney. Hence the
phone call and the conflicting instructions. My kidney is showing strain
related to the PTLD treatment course and the goal, in increasing my immune
suppression, is to try to avoid rejection.
I have this picture in my head. In it – I’m walking a tight
rope, but it’s my elephant doppelganger, wearing a tutu, carrying a pretty
parasol. Life with PTLD t's a balancing act. And until lately, I had
confidence, that if I listed too far to one side, my tutu covered tush would have
a safety net to catch me. But no longer, my safety net’s been pulled out from
under me.
What’s my safety net, you ask? I experienced 10 blessed years
with my previous transplant. But interspersed throughout those years I had at 3
memorable episodes of rejection; each of which were effectively treated with
massive doses of steroids and immunosuppressants. My safety net – an arsenal of
medications and treatment options to hold on to the precious gift of
life-giving spare parts. At my last Nephrology appointment, my specialist
explained to me that there’s little recourse for rejection with PTLD. The same rapid
influx of meds, typically used to suppress my body’s immune system defenses and
reverse rejection, would, with near certainty, trigger full blown lymphoma. Hastag
good-and-complicated
As I’m writing this, I’m headed to the hospital for damage
control. A kidney biopsy, later today, will give doctors a better idea of what
treatment course is feasible.
If I’m honest – facing the risk of losing my kidney scares
me. Probably because the long journey to this miracle kidney is still fresh in
my mind. I like the sense of security that safety net provided. And yet, while
I confess moments of fear and discouragement God has been so faithful to remind
me of His promises. Truly – who needs a safety net when we have the promises in
Isaiah 41:10:
‘Fear not for I am with you. Be not dismayed
for I am your God. I will strengthen you, and help you. I will uphold you with
my righteous right hand.’
Fear – check. Dismayed – yep. No safety net? No problem – God
promises to hold me in His hand! Nothing is too harrowing or impossible in Gods
strength; not even, a tight-rope walking complexity!
Without knowing it, I’ve been placing my trust in false
security. I don’t like this hiccup, but I am thankful for the reminder of who
holds my future and the opportunity to refocus and give God my full trust. hastag
its-good-its-complicated-GODS-GOT-THIS
‘Trust
in the Lord with all your heart and lean no on your own understanding. In all
your ways acknowledge Him, and He will make your paths straight.’ Proverbs
3:5-6
‘And my God will meet all your needs according to the riches of his glory
in Christ Jesus.’ Philippians 4:18
I
would greatly appreciate your prayers – for healing, peace and wisdom. That no
matter the outcome, II won’t lose sight of God’s faithfulness, that I’ll be a
blessing to those around me and that God will be glorified through every
circumstance! And… on a selfish note, that I’ll be out before I run out of
clean undies – kidding, not kidding. ;P Let’s just say – I have enough to get me
through mid-week, I’m praying I’ll be home before I have to creative. But hey-
even that’s not too complicated for Christ. No matter the circumstances, He’s
not caught unaware, He’s not sleeping on the job and He cares about the big and
little things that cause me pause. He’s the hand that holds me up and guides me
along the tightrope!
‘Do
you not know? Have you not heard? The Lord is the everlasting God, the
Creator of the ends of the earth. He will not grow tired or weary, and his
understanding no one can fathom.
He gives strength to the weary and increases the power of the weak.’ Isaiah 40:28-29
He gives strength to the weary and increases the power of the weak.’ Isaiah 40:28-29
