Bee-uty From Ashes

#TBT This picture from 6 years ago came across my FB memories this week. On the surface the photo depicts a pretty chill scene with me dressed up – nothing especially out of the ordinary if you know me or have had the ‘pleasure’ of encountering Gertie ;) And though cloaked in good natured humor, the sign I’m sporting was no joke. At this time six years ago I was keeping one of the in-center recliners warm 3-4 hours a day, 3 days a week, while on the blessed life support that is dialysis. 

The smile in this photo is genuine, after all, my mottos is the same as my blood type – B[ee] positive, but it was a journey to get there; through repeatedly spoiled plans, dramatic tantrums (lets just say, I may have a touch f Gertie’s flair), valleys so deep & thoughts so dark. 

In the first few years leading up to this joyful grin and slightly irreverent, totally punny signage I’d have looked and acted more like a disgruntled porcupine or freshly laundered cat – totally miffed that life had sped so far off the course I’d set out for myself. Three cancelled transplant attempts, infection, traumatic wound care scenarios (think – large hand wrist-deep in belly incision, sans anesthesia or pain meds…twice), cardiac arrest, defibrillation, losing my job and all manner of anxiety and panic attacks have a way of getting a girl’s attention, even a thick-headed one like me. It’s so remarkable to me the change God can bring about when you just let Him. 

With an adjustment to my politely hostile, wet-cat-way of thinking, courtesy of the Almighty, I began to see the new place & purpose Christ had set before me, in perhaps, the unlikeliest of places. I’d been figuratively dropped (the experience was jarring, to say the least) into a 25(ish) chair hemodialysis center with a (likely) not-so-willing, but, still, rapt audience of nurses and neighboring patients who couldn’t get away from me as long as I was hooked up. My circumstances hadn’t changed when this snapshot was taken, in fact, my health outlook was more drear and statistically daunting than my first few years. My living donor had to back out & due to that previously mentioned infection,  my statistical possibility of getting a new kidney was a 0-3% chance (so glad God’s not limited by math). And when well meaning people wished to command kidneys into my body, I was deeply appreciative of their love for me and desire for my wholeness, but I remember thinking… I wasn’t convinced I wanted a new kidney *gasp*(stay with me), if it required another family to lose someone they loved, and furthermore, while I hadn’t grown to love dialysis, I had grown to love the challenge of making my cranky dialysis neighbor smile, when everyone else skirted his tempers, bringing dietary friendly treats, encouraging dialysis newbies & dressing up during the holidays – halo on Monday, glowing antlers on Wednesday, and….wait for it….a singing, dancing Christmas tree headdress on Friday (you better believe I was the cool kid ;) ). I had finally found a mission field, purpose and joy where I was, I didn’t want to sacrifice that for the sake of a new, used part.

Against all statistical probability I received a most blessed gift of a new kidney a year after this bee-tactic shot was taken – and I am so thankful.

That’s a lot of backstory, from days gone by, but the pic struck a cord in my heart this week and it seemed especially relevant in the weeks since my last immunotherapy treatment. My last treatment was the end of September, but its only been in the last week that I’ve had a few days reprieve from over a month long doozy of a headache (its back today, which only reinforces how ah-making those few days without was). That eager Bee in the photo feels like a monument in time – like an altar of bible times built to remind folks of God’s faithfulness (or even the ungodly colors I choose to pepper my hair with) – this frozen frame of time speaks of the valleys Christ has brought me through and how He used each circumstance – big, little, traumatizing & otherwise – to intricately weave together my story in a dance I’d never have mapped out (which is best, since I’m a Mennonite-Southern Baptist hybrid – two left feet). 

I just finished reading #NothingWastedBook by @kaseyvannorman (SO.GOOD.) and in it she talks about how God uses the things in our lives (the good, the bad & the ugly) – all of it, for our good & God’s glory. It’s a powerful read, that I highly recommend, but one thing I especially loved is how, in the last chapter, she maps out how the events, circumstances and decisions of her past were used by God to shape her and bring her to Christ. Seeing the impactful ‘domino’ effect of each instance in her past was tremendous and beautiful to see God working through it all 

So with all the uncertainty of whether my immunotherapy will keep my kidney in check this picture’s a timely reminder of God’s faithfulness in my life – then & now – no mater the circumstances. Because they say hindsight is 20/20 and I think perspective is a God-given gift, I wanted to end with my own set of ‘dominos’ – how God’s used each seemingly wretched life event for my good and His glory. Sorry, not sorry, if you already have heard this – I hope I never lose the awe and appreciation for where God has brought me and from what He’s delivered me!

My donor stuck with me through 2-failed transplant attempts, the second of which was my appendicitis the day before transplant — If I’d had already had my transplant, an appendicitis would have, likely, been fatal. — During the third transplant attempt my donor was ruled out due to a risk of an immune disorder, which could have a negative impact on her kidneys, God was looking out for both of us! — Without a living donor I was placed on the deceased donor list — Due to the infection my antibodies skyrocketed to 98%, giving me a 0-3% chance of finding a donor match — due to that earlier appendectomy I was no longer able to do dialysis at home and that meant I had to do dialysis in a center — That dialysis center doubled as my own mission field (think along the same lines as Paul and his ‘house arrest’ jailers) — God gave me a purpose that allowed me to utilize my love for baking & nursing (‘no sir, Pickles are not on the renal diet, no sir, just because a pizza comes in one container does not make it one serving’) — Because I was a statistical nightmare for finding a kidney match I was bumped up to ‘high priority’ on the national list — Because that heinous infection made me a statistical donor match nightmare I received a near perfect young kidney! 

Life has gone on since then and it has had it’s fair share of blessings & hiccups. Because my donor was EBV+ (the virus that causes mono ‘kissing sickness’) and I was not (if I’d only known, I might have kissed more boys ;) ) I was treated for transplant specific lymphoma in 2017 & 2018 (clear since last year PTL). And last year that pesky EBV raised it’s head once more and triggered a winter-long bout with active mono. And then there’s now, with some evidence of rejection brewing. Hiccups are a… bummer. But like tornado watches, which keep (non-Kansas) folks on their toes and ready to take shelter, hiccups keep me vigilant to look to my Refuge, Rock, Fortress and Stronghold (Psalm 18:2)! Turbulent waters prevent stagnation, eh?!

I’ll leave you with this, an encouragement and promise I keep close to my heart from John 9. When Jesus & His disciples are walking along the sea ‘ a man blind from birth. 2 His [Jesus’] disciples asked Him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.’ Did you catch that?! What we might see as ashes, God can make beautiful! My soul does a major happy dance here – God uses trials (like this man’s blindness, sickness, sinful decisions and situations beyond our control) to show up and show off His power and ability to be strength in weakness, peace in chaos and faithful through it all! God is a master builder, using the things we wouldn’t to shape our character, show us how deeply we need Him and bless others – Nothing is Wasted or void of purpose,  not even the stuff we might prefer to keep packed in the baggage we carry around! Yes, Yes, Yes! Beauty from ashes, baby – that’s indeed worthy of an amen & a happy dance!

Your picture… your ‘altar’ of remembrance of God’s faithfulnessin your own life may look nothing like mine (I think that’s a pretty safe bet ;) ), but I encourage you to take time to erect that monument of praise to the Lord and remembrance for yourself! Set up your own ‘dominos’, how God’s used the stuff you wouldn’t to masterfully map out your life’s events to bring you to this place and the places to come.  I love how Kasey says it in her book #NothingWasted, ‘God rightly knows what we so often question, His process is the point.’

God bless ya my friends!

#NothingWastedBook

https://smile.amazon.com/Nothing-Wasted-Uses-Stuff-Wouldnt/dp/0310357160

Nothing Wasted

This fall, following a routine transplant check-up I got a call from my specialist. Knowing how busy they keep, I’ve come to understand that a personal call from my Doc is less flattering and more concerning. I was right to be suspect, as he shared that one of my blood levels, the one that keys them in to donor DNA hyper-activity and transplant rejection risk, was 3 times the normal limit. Yep, I’m an overachiever! 

Because this test is so new and my results didn’t really jive with all my other levels, the specialists had deemed it necessary for me to have a two-day round of immunotherapy. Think whack-a-mole; where the donor DNA is the pesky mole & the IVIG (medication) is the mallet.

It’s wasn’t my first rodeo (i.e. round of treatment), but what was different was the peace that came over me even as I played the what-ifs game - contemplating the prospect of rejection and other outcomes… The other difference was this tremendous book I came across the day before my first treatment #NothingWasted, by @kaseyvannorman .

I was familiar with Kasey’s first book & Bible study #NamedByGod and as I happened (yeah, right, totally a God thing) upon a post about Kasey’s newest book #NothingWasted the subtitle jumped out at me ‘God Uses the Stuff You Wouldn’t’. Now this was a book I had to read! Because, well, if you know my history at all (and even if you don’t) you know that I’ve had quite the journey of dark valleys, health hiccups and an amazing array of God’s grace, peace and ever-present care throughout! I wouldn’t have asked for, demand a repeat performance or wished on anyone the trials I’ve faced, and yet, I’m forever grateful for how God has used such yuck as misdiagnoses, vision & transplant loss,, eight cumulative years of dialysis, and lymphoma  to shape my character and remind me of His!

This book couldn’t have come at a better time, and though with my low vision its been slow and tedious, #NothingWasted is none of those things!

From the moment I began reading Kasey drew me in with her

, raw candor & vulnerability! As she unpacks her own past ‘yuck’ within the book’s pages I wept – for her, for me – because she doesn’t keep you there amongst the ashes of her past, but continually brings out the truth of Who God is and where He was in the midst of her trials and how He is using it all – the brutalities thrust upon her, the generational hurts she harbored, poor judgments – all of it to shape her, to teach her and for her good and God’s glory! It’s a stirring testament of the beauty God can create out of the ashes of our past!

One of the lines that I keep coming back to from Kasey’s book:

‘God rightly knows what we so often questions, His process is the point.’ 

She goes on, 

‘.For us to fully believe who we are in God, right here in this moment, based not on what he does but instead on who he is, life on our terms must come crashing to the ground.’

Wow! My highlighter is getting a major work-out as I read through this treasure trove of truths! Kasey is a masterful story teller – raw, riveting, relatable, brave and smart! She unpacks her own personal journey so vividly – the good, the bad & the ugly – no holds barred; all for the benefit of those of us looking on, to helps us understand how God has shaped her life and left nothing within her journey void of purpose. Love, love, love this! And if that’s true for her… What hope she brings readers as she shifts the focus from her story to remind us of God’s character and the grace, love, guidance and PURPOSE He has for our own personal story! That’s a big one for me – I never have doubted God’s love or grace, but living life adrift of purpose while you watch life race so far off course from your plans or dreams feels hopeless.

 So often it felt as though Kasey was speaking directly to me (I totally want to hang out with this girl & eat pizza… or tacos – the point is she’s incredibly relatable) and at other times, it felt as though she was reading an excerpt from the pages of my journal - her insights and love for Jesus totally blessed my heart! This book isn’t a fairy tale, its far from it – its gritty, eye-brow raising, heart breaking and soul renewing. It’s better than a fairy tale, because its real and the Hero of this story is the God that is privy to all the yuck we have thrust upon us and steaming piles of yuck we dive headlong into — He sees it all and He uses such tremendous piles of ashes and creates beauty in it’s place! If you’re looking for encouragement, reminders of God’s character and the purpose He has for your life (mess & all) this book is a powerful must-read, just don’t forget the Kleenex!

#NothingWastedBook has found a place of honor on my coffee table as I continue to await the outcome of my immunotherapy. It’s serving as a reminder that whether my test results are happy or crappy, its part of my story and Christ is able to use it for my good and his glory! And that, is a story with a happy ending!

 

#NothingWastedBook

#NothingWasted

Www.nothingwastedbook.com

Watch Your Step: Walk by Faith, Not by Sight

I love object lessons, don’t you? I find myself far more likely to grasp and remember a concept if I have a relatable, first-hand example to drive the point home (I especially appreciate the example in food form). ;)

Today God supplied me with one-such object lesson (sans food). I had a humbling experience that made me reflect on 2 Corinthians 5:7. It’s a pretty common scripture – it graces postcards, mock eye charts and decorative signs – ‘For we walk by faith, not by sight’.

Whenever I glimpse this verse I chuckle at the irony of how it could so easily be my life verse. Since I lost my vision I take a lot on faith. For instance, I trust that the white creamy substance located near the meat course is gravy. Imagine my surprise to discover not everyone arranges a table the way I expect and my entrée is swimming in tapioca pudding.

Today I made a less messy, but equally surprising, humbling and impactful misstep, literally. A curb rose up to greet me and left me with a wrenched left side as a parting gift. I had no one to blame, but in my embarrassment and pain I wanted to cast blame anywhere but with its rightful owner… me.

When I first lost my vision I went out of my way to appear normal, in fact, I took pride in keeping others in the dark as to my limitations. Through the years, friends and family have challenged me to be more honest and forthright with others about my low vision and to not be too proud to ask for help. Case in point… in the first years of adjusting to difficulty with facial recognition I had some of the most generic conversations as I pondered who I knew well enough to receive hugs from when returning to my hometown. I’d smile and nod, but all the while I’d wrack my brain to figure out who I was talking with. If only I’d had the grace to put aside my embarrassment and pride and just ask who was hugging me I’d have had a much more edifying conversation beyond – “lovely weather we’re having.”

Navigating unfamiliar territory with blinders and a foggy windshield (figuratively speaking) requires a good guide. I am blessed to have several friends and family willing to be my seeing-eye guide, but even so (and without casting any disparagement upon their helpfulness) I’ve been hit by speeding moped, trampled countless wet floor signs, gotten lost in my own neighborhood, am perpetually disoriented in department stores and most recently, taken a tumble up a curb.

Whom I choose to follow, impacts my well-being. And when I choose to rush ahead or lag behind my guide or go my own way to cloak my weakness I come to no good.

The spiritual parallel of this hard truth isn’t lost on me tonight. Our humility and willingness to seek guidance is every bit as important as whom we look to for guidance. I can choose to rely on myself or get swept up in the world’s trends and rhetoric, but without Christ’s faithful, trustworthy & timely guidance, sooner or later I’ll have another curbside close-encounter.

How many times have I run ahead or lagged behind when I felt God’s prompting? Or worse yet, forged my own path to prove my self-sufficiency? And each time, when my plans go awry I shift the blame elsewhere or question where God was – why He didn’t save me from the chaos and hurt of my own making. It’s every bit as pitiful as grasping for a stand bar on the Underground and grabbing a fistful of a sweaty man’s chest!

Proverbs 16:18  First pride, then the crash—     the bigger the ego, the harder the fall.

The takeaway from today’s spill? I may need to swallow my bruised ego and start sporting a new accessory – white cane training here I come?!?! But more important taking practical steps to guard against a bruised ego or backside I’ve been reminded that Christ is always a safe guide! I think Corrie ten Boom sums it up beautifully, “Never be afraid to trust an unknown future to a known God.”

Its Good, It's Complicated, It's Covered by Christ

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

Seeing Pink: Beauty and Hope on the Heels of Storm Clouds

At present, I’m laying here sucking Jello from its pre-packaged cup. Why, you ask am I still single? Two reasons:

1.    I’m nowhere near a spoon

2.     I’m off solids in preparation for a procedure tomorrow – which ‘obviously’ explains both, my snack choice and my lack of decorum (obviously I’m far too weak to trek down the hall in search of a spoon).

But honestly, I’m hungry, bordering on hangry and just minutes from whine-gry (this may be a Vanessa-original - a word combo based on hunger induced whininess – which in all fairness could also be referred to as Hiney, but really folks – I’m so much more tasteful than that). ;P Is Jello the snack that smiles back? Because I think I saw it chortle when I passed the real food to suck down its slimy contents like a greased pig on a waterslide. Ooh bacon!;)

I’ve been asked by several friends and family how I’m doing lately and I’ve been rather lax about blogging or correspondence. Maybe today’s not the best day to ask me, as the neighbors begin to launch noise complaints due to my stomach rumbling and my cat thinks my stomach’s growling is a personal affront.

But seriously, I’m good,  I’m tired and I’m good and tired. And beyond that I’m incredibly blessed! I’m trying to remind myself to savor each moment, take every opportunity to be purposeful and be a good sport as I fund a handful of specialists’ summer vacations. ;D

This week I’m inundated with doctor visits, tests and procedures every day except Friday, but in the two weeks prior I’ve been overwhelmed (in the best sense of the word) with the blessing of savoring moments and the people that made them memorable. I’m unable to forget my PTLD diagnosis with my perennial visits to medical professionals, but without those perpetual reminders I’d be apt to forget. Not today – but most days. Pardon me if this sounds ridiculous, but I’m glad for the reminder. I’m glad because it keeps me mindful that life is precious –it’s a gift from God and it’s meant to be lived actively – not passively. I want to live in the fullness of the purpose God has for my life – quirks and all.  And, if I’m honest, it’s easy to get lazy and let life pass me by.

God continues to remind me of His faithful character. In fact, today it felt as though He provided extra measures to reinforce the hope I have in Him through my morning devotions and in the song selections coming from the car radio (check out ‘Still’ by Hillary Scott).

‘Let us hold unswervingly to the hope we profess, for He who promised is faithful.’ Hebrews 10:23

I love how God paints word pictures – He evokes tangible emotion through our senses and provides ample opportunities for us to be assured of His faithfulness. Just look at His creation – the critters roaming this world, the watercolor daybreaks and the dark velvet expanse of night sky shimmering with stars. As a child I listened to my ‘Creek Bank Kids’ cassette tape (yes I am that old) enough that I still catch myself humming snippets of songs. Today these lyrics came to mind.

This world is like a coloring book His beauty’s everywhere I look                                                                    Every color that I see reminds me of His love for me                                                                                              God paints the world with love, that’s how I know He lives                                                                                  He fills the earth with colors and in that way He gives                                                                                                 Such happiness oh how we’re blessed to have this picture of                                                                                         A wonderful God Who cares so much that He paints the world with love

Tangible reminders make me smile. I was six when my grandpa died, but despite so many years removed from his company, I’m only one banana shake away from the most vibrant memories of him and his homemade ice cream. Maybe that’s why God chose to represent His faithfulness in the form of a rainbow. Genesis 9:13-15 says:

‘I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. ¹⁴ Whenever I bring clouds over the earth and the rainbow appears in the clouds, ¹⁵ I will remember my covenant between me and you.’

Isn’t it poignant that our Heavenly Father chose to paint with a generous color palette to reflect His promise? Beauty and hope on the heels of storm clouds and despair.

Tomorrow I’ll have more biopsies to determine the effectiveness my medication changes have had. To see if my immune system has found a toe-hold to fight the lymphoma cells. I’m preparing for that in two ways: One - the aforementioned diet (spoons optional, no chewing necessary) and two -  reminding myself of God’s promise of faithfulness.

Aww… that sounds so pious doesn’t it? Serene even. Well, not today.

Forgive the limited view of candy cotton color -

I suffer from selfie-insufficiency

Today I chose to boldly go where I've never gone before and I broadened my hair color horizons; taking my cue from God’s plentiful color palette with a pop of color that even I can see! And I love it (perhaps because I'm hungry, but the shades of purple and magenta make me think of cotton candy)! Two weeks ago I anticipated having no hair. Maybe that’s still in my future, Lord willing, maybe it’s not. But regardless, I’m celebrating God’s faithfulness in a little less orthodox, far more flamboyant fashion.

Now, when storm clouds roll in I need only look in the mirror to remember my God is faithful, my God is good – and that truth doesn’t change - no matter the weather!

‘Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.’ Lamentations 3:21-23

Steady On: Fast and Furious vs Slow and Stubborn

I had this conversation with a friend last night pertaining to waiting. I flippantly replied, ‘yeah, with all my experience waiting you’d think I’d be an expert. I must be a slow learner.’ The friend’s reply? ‘Oh no Vanessa! You have it all together – slow isn’t an accurate descriptor for you at all.’ Can you believe how well she knows me? Wait, sorry…. I had my feel-good filter on. Reality check – here’s actually how well this friend know me.

Me: ‘…with all my experience…blah, blah, blah…. I must be a slow learn.”

Friend: ‘Yeah. Or stubborn.’

Slow or stubborn. I’m not sure which moniker is more attractive, but regardless, I’ve been presented with an opportunity to once again wait (and maybe disprove these descriptors).

I don’t receive too many verbal threats – Oh, I’ve dealt with a few school-yard bullies in my day, but usually they did more pinching and shoving than talking – but they did make an impression (that munchkin-shaped dent in locker 214…) Overall, I’m pretty adept at ducking conflict. But there is one verbal threat in particular that leaves me shaking in my shoes. I was teasing a friend earlier this month when they doubled down and hurled the following verbal assault my way – “I’m going to ask God to give you….PATIENCE.”

*Full body quiver* Oh heavens to Betsey and Lord have mercy – what did I ever do to you?! Think I’m overreacting? I think not. But just in case, I’ll pray you’ll have patience with my dramatics.

I last prayed for patience in 2011. I’m certain of the year, because I had a full on melt-down that only a toddler deprived of their heart’s desire can rival. I remember feeling quite certain that God was highly overestimating my ability to rise to the challenge. I’ve learned my lesson… Now - I’m not claiming to have a firm grasp on this particular virtue, but I don’t want to be greedy. ;P

Amazon Prime 2-day shipping - *whine* why must it take so long – that’s FORRRRRREVVVVVVER! *pout, stomp sigh*….*Click - Expedited shipping*

Where, oh, where am I going with this whiney prelude? Good question.

Without praying for it, God is giving me, yet another opportunity to display patience. I say display, because He doesn’t just hand out the patience of Job (at least not in my experience). Instead He allows us opportunities and life experiences in which to exhibit such virtues. I imagine there was some character molding and patience gathering in the time between the first and last chapter in Job. What’s that saying? Experience is the best teacher? Truth. *Sigh*

I met with my Nephrologist and Oncologist within the last week to review my scans and biopsies. Overall, they were encouraging and the visits were positive. My PET scan and bone marrow biopsies were negative – indicating no spread of the PTLD from it’s point of origin. THANK YOU JESUS! What a remarkable answer to prayer and gift from God! With the lymphoma cells localized my doctors have recommended conservative treatment measures at this point. With alterations in my medication regimen and level of immune suppression the specialists hope to delay or avoid chemo altogether. I’ll maintain this treatment regimen with frequent lab checks and retest in 4-6 weeks to see if there’s been any change in the PTLD site. Further treatment will depend on those results – more waiting or more targeted treatment.

All-in-all this is good news. Tremendous news really – I can revel in hairy legs (further evidence to my single status?! What?;P) and chemo free days for the present. And yet, while I rejoice in the gift of good news and a block of doctor-free days on my calendar, I feel a let-down of sorts. This let-down has everything to do with the frustration of more questions. One of my specialists told me in no uncertain terms that finding this lymphoma was a ‘fluke’, because all of the symptoms and pain I’ve been experiencing are unrelated to the PTLD. Say what? This means that while I have some answers, I also have more fact-finding in my future. It also means that I must, once again, wait. Wait – that’s a terrible four-letter word isn’t it?

A friend of mine hit straight to the heart of my frustration. ‘You’d rather be doing something.’ Ah, what is it with my friends knowing me so well? He read me like a book. I want to be rid of this diagnosis. I want to click on expedite and forgo the wait.

‘Be joyful in hope, patient in affliction, faithful in prayer.’ Romans 12:12

Joy is dandy – I’m a big fan of joy. Pretty stoked about hope and faithfulness is a quality I fully support. But there’s that pesky middle phrase… ‘[be] patient in affliction’? I’d be comfortable omitting the middle phrasing. And yet - *sigh* despite my slow and stubborn attributes I know the Lord’s timing is far better than my own. I want to run ahead, conquer and race away victorious (all without literally running, of course). But God is the ultimate exhibitor of patience – He doesn’t have to rush, because He sees the whole picture and is ALWAYS right on time.

Reminds me of this time when I was little. We had this go-cart on the farm that was missing an engine (or is that a motor…. It was missing it’s get-up and go). In order to drive it beyond its neutral positioning Dad would hook it behind the 3-wheeler and give us an amazing thrill ride! That summer day we had friends over. Dad was giving each of us kids rides, facilitating our inner-speedster, when the oldest of our bunch took his spot behind the wheel. Wow! He had swagger – no doubt he had it all figured out. As Dad headed towards the 3-wheeler he hollered back his reminder to have fun, but under no circumstances was he to try to pass Dad’s lead vehicle. It’s not too hard to guess what happened. After careening around the farm yard for a time, our suave speedster grew tired of following and during a fast turn he cranked his wheel to slingshot around the lead vehicle. He caught air, gained momentum and then the lead rope caught the tire – his visions of grandeur and disregard for the urgings to not race ahead of my father fast became an impressive pebble collection with a bum full of road rash.

I ached for this kid’s burned behind, but I also wondered at his foolish disregard of my Dad’s instruction. Ah, me. So often I am this eager beaver and speed-racer. Throwing caution and promptings to ‘wait’ to the wind so that I might do what I think is best. It’s momentarily satisfying, but the repercussions can be as long-lasting and painful as a debris-encrusted derriere.

I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; He set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the Lord and put their trust in Him.’ Psalm 40:1-3

Tomorrow’s Easter – no matter what seems big or significant in my life right now, my struggles pale in com* parison to the act of sacrificial love Christ showed each of us by taking all our guilt and shame upon His shoulders. Withstanding every torture and disgrace in my place. A friend said it best – ‘If Christ would do all that for me, how can I do less than serve Him in what I’m going through.’

So, here I wait. Joyful in hope, fervent in prayer and yes, even endeavoring to be patient in affliction. I want to be purposeful in this calm and willing to be used no matter the circumstances.  I don’t want to be speedy and get ahead of my Father's wise plans for my life, nor do I want to be a slow learner. With Christ’s help, I hope to steady on.

‘Even youths grow tired and young men stumble and fall, but those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint.’ Isaiah 40:30-31

Reflections and Reflective Surfaces

This last week has been a blur. What a hectic 10 days it’s been. You know, I’m really a low maintenance low key kind of gal (the low maintenance ship sailed many diagnoses ago). I enjoy staying busy and being with family and friends, but I’m perfectly content to hibernate for days at a time with just a good book, my laptop, internet and ice cream. I’ve been itching to jot down my thoughts and the events of the past week and a half,  but between appointments and sedation it’s only now I’ve had the time and clarity to do so. Better late than never I guess.

This last week the reality of how my PTLD diagnosis could potentially alter my coming weeks and months became clearer. Almost like when you cut yourself. There’s that momentary numbness right after the incident and right before the pain. Like two summers ago I decided I was up to the task of cutting a watermelon – with the new cleaver-style knife I’d gotten through Groupon. I whacked away at that melon with the finesse of a 3-year old trimming their hair – when, with one slip, my giant knife met my itty-bitty finger. Or when my food processor blade bit me. The initial blow stung, but it wasn’t until I pulled my hand away and misted my face red that the sickening feeling in the pit of my stomach deepened, followed closely by the full impact of the injury and persistent pain. (The cleaver and I are still not on speaking terms, the food processor and I have since reconciled).

Processing this diagnosis and all the information that come with it feels like a similar progression, nowhere near as gruesome. I’ve had this blessed soul anesthesia – it’s allowed me to be clinical, reasonable (mostly – the carb-free day being an exception), and pragmatic. My Google search history is chalk-full of awesomeness – haircuts, unicorn hair color (much to my mom’s chagrin), wig research, lymphoma message boards, cancer articles, research abstracts, chemo and DPOA documents to name a few.

It’s my way of processing, my way to have my ducks in a row, plan, take control of what is a situation I have no control over. No – that’s wrong. I do have some control – in how I react to this new life adventure, how I choose to move forward with this diagnosis and treatment, how I choose to embrace the purpose God has for me and Whom I choose to trust. Oh, and whether or not to color my hair like an Easter egg ;P

I spent some time away early in the week with my mom for therapy – of the retail and laughter variety. Two days spent laughing and talking, shopping and eating.  I expected the time away to be a PTLD-free zone. No talk of lymphoma or treatment – only fun and frivolity. I was right… and I was wrong. It was fun, but lymphoma doesn’t take vacations and the topic was never far from my mind. Talks about lymphoma and treatment possibilities made their way into our conversations. It’s hard not to – and I’m glad it did, because it gave us a chance to explore the hypothetical, possible and probable in candid conversation in a safe space…. with the aid of cheesecake. ‘(Just a spoonful of sugar helps the medicine go down…. ‘)

Reality bit, err, hit¸ upon my return home with Wednesday’s bone marrow biopsy. I’d heard multiple accounts of how dreadful the procedure was – and I was looking forward to having it behind me (which is exactly where it was done). ;) I can think of other ways I’d prefer to spend my time, but really, it wasn’t as bad as I’d anticipated. The IV sticks were the worst part pre-procedurally. That and the early morning scavenger hunt they sent me on upon arrival.  They gave me a cup and asked me to fill it with some vague mention of a hallway, a wood floor and to my right. To be fair, it was early and I wasn’t caffeinated. I’m pretty resourceful –  but after wandering down two dark corridors and finding no water spigot I decided the hunt was too exhilarating to keep to myself and recruited help in finding that elusive room to the right with a wood floor (I never did find the water fountain, but somehow I filled my cup). But I digress – bottom line.  Praise the Lord for His peace and comfort and for anesthesia’s sedation - the procedure wasn’t as bad as I anticipated! I guess I should have been better prepared, the nurse I talked to told me I should expect to feel like I’d run into a sharp object with my hip. I’ve had years of practice bumping into things ;) It wasn’t so bad, I don’t have any powerful urges to make a repeat performance, but it’s been very tolerable. I’ve been rocking pants with elastic waistbands and a week later I’m still sitting a little more carefully and conscious of some derriere discomfort , but otherwise I’m no worse for wear.

What really stands out to me about that day was hearing my nurse’s take on my situation. While she fished for a viable IV site and I recounted my health history – apologizing for being a difficult stick her comment was ‘it’s understandable – you’re one sick young lady’. Strange. In a day of multiple IV sticks and bone marrow ‘core sampling’ that’s what really stung.

I spent Thursday afternoon hair shopping. Yep, hair shopping. Chemo seemed to be a real possibility based on the conversation with my oncologist two weeks ago and I wanted to be prepared. For anyone that knows me well or has ever met Gertie you’d expect a room full of wigs to be akin to a kid in a candy shop (or for that matter, me in a candy store). It was an impressive array of hair. No matter how I hyped it or the enthusiastic responses to the different do’s I tried I couldn’t shake the reality – I wasn’t picking a style for a new flamboyant character to introduce at church. That’s fun – the outlandish allows me to say and do things with the safety of a pseudonym. I mean, shucks! Gertie sees every man that’s upright and breathing as a potential dating possibility – she makes Farmer’s Only.com look likes child’s play. I on the other hand….  My doctor described me as being one of the ‘unlucky’ few to never have had EBV, better known as kissing disease – Need I say more?

After finding suitable hair and headwear I spent the car ride home comforting myself with the Brightside of proposed hair loss. This is what I’ve come up with so far:

1.       I love hats

2.       Big fan of scarves

3.       Everybody loves Mr/Mrs Potato Head and they rock their look sans hair

4.       I could save a bundle on waxing

5.       My eyebrows could reflect my mood or artistic flair any given day

6.       I could change my hair on a regular basis

7.       No more bedhead

8.       It would be cooler for Spring/Summer

9.       Save a bundle on hair products and hair styling time

AND finally….

10.   I can bring my legs out of hibernation – they’ll be beach ready at all times

I almost had myself convinced. But to be honest, it was the first time I really had to fight tears.  I may have waged a love/hate relationship with my curls for the last 29+ years (I rocked the cue ball look my first 3 years of life), but the possibility of losing it has given me a new appreciation for my hair.

Like one friend pointed out – hair loss related to chemo makes your illness evident to the world around you. It’s true – I’ve spent years trying to seem as normal as possible in regards to my vision. So much so, that when I was still able to work, some of my co-workers were unaware of my low vision – asking me to decipher Physician’s handwriting for them. It was a point of pride for me. As long as no one knows I’m ‘sick’ than I’m really not. Maybe that’s as naïve as thinking if I can’t see you, then you can’t see me. ;P There’s a certain vulnerability to displaying our weaknesses – It’s humbling.

Maybe that’s why I relate so very much to Paul when he writes in 2 Corinthians 12:9-10,

But He [Christ] said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. ¹⁰ That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. ‘

Maybe my diagnosis will be evident this summer, maybe it won’t. But I do know that God is writing the story of my life and I want my life to reflect the hand He has in it – Whether that includes bed head and bad hair days or silky smooth legs and a bald head (just one more reflective surface).

Holding on to my humor,

Vanessa ❤