Are There Adult Merit Badges for This Sort of Thing?

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.

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My new uniform

Well, here we are on February 29 - Rare Disease Day. 

The day lands a little bit differently when you realize you're now among the less than 5,000 people in the US with a rare type of brain cancer.

Do they give out adult merit badges for this sort of thing? Because I feel like I need a Girl Scout badge or some flare or something to mark this achievement. At the very least, I'll be sporting this shirt more often. I bought it well over a decade ago somewhat on a whim, but have rarely worn it, it's so obnoxiously bright and makes me feel too conspicuous in public. 

But it now seems like a good time in life to start shamelessly wearing it. 

I texted my cousin earlier today who also has a rare disease of his own, one he's had since he was a child, "Happy Rare Disease Day?" 

He responded back, "Welcome to the club. 😂"

(He also added, "A club I don't want to be in." So, yes, even in humor, let's also acknowledge the flip side of that coin. We're both in clubs we'd prefer not to be in. But here we are.)

I then thought later, "Shoot, two people in the same family with two different rare diseases? That feels like it warrants some sort of momentous bucket list-worthy kind of trip."

Oh, wait.

That's right. 

We did do a bucket list-worthy trip last December. 

We just had no clue how timely that trip would be.

Shortly after I was admitted to the hospital earlier this month, I texted my aunt, my cousin, and my friend, Kristen, my three travel companions on our trip to Alaska, and said, "I keep thinking of Alaska. That trip was ordained. I'm convinced. God knew what was about to show up on my doorstep." 

That trip was yet another thing I look back on in recent months and get overwhelmed at the graciousness and kindness of God. It really was the trip of a lifetime. I wrote about it earlier, but also wanted to share the video I put together of the trip. There are a lot of significant moments that will stand out from that week in the interior of Alaska, but what keeps rising to the surface is the memory of how much we laughed. I hadn't laughed that hard and that long in awhile. And then we would do it all over again as we retold and relived moments. The laughter, that "carbonated holiness," as Anne Lamott called it, bubbled up in our chests on a regular basis that week. Those are the memories that will linger with me, the moments I will recall in the months ahead.

(And if you're a fan of the Iditarod, be sure to root for Josi Thyr! She was one of our mushers on our dogsled tour and she's running in this year's race, starting this Saturday!)

Coincidentally, when I put this video together back in late December, I debated on what song to pick. And now in hindsight, I couldn't have picked a better one. 

Thanks, Ben Rector, for supplying the soundtrack of my life. 

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I have a functional MRI scheduled for next week, which is going to help us better assess how much the steroids have helped reduce the swelling around the tumor itself, as well as inform some decisions for possible surgery. I'm still in a place where I'm trying to get clear recommendations from both the lead team of doctors and then the team I sought out for a second opinion, and then ultimately compare the recommendations. 

I saw my primary care provider about my knee. No major concerns there, but it's still a bit puffy, so I've been icing that on occasion and trying to rest it when I can. I'd ideally like to get back into a rhythm of doing some very light workouts, but I'm very aware of the limitations of my body at the moment and know it will take some time for things to get back to (mostly) working order.

Sleep is significantly better and Flash's middle of the night office hours seem to be a thing of the past. But I have decided that Garfield the cat is my alter ego. You gotta watch out for those nap attacks. 

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your name directly in the body of your comment? That way I know who you are!

The Stage Was Set

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.
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"Were there any indicators as to what was coming?"

That's probably the question I get asked most often lately. Did I see any of this coming? Were there any warning signs, anything happening that would have made me think something more sinister was going on? 

The answer is largely "no." I had been on unfriendly terms with my left shoulder for nearly a year, seeing multiple providers, including a physical therapist, an orthopedic doc, and two neuromuscular/chiropractors over a period of nine months. No interventions seemed to be moving the needle and there didn't really seem to be a consensus as to what the actual problem was. I was making constant modifications at the gym because the pain was substantial enough to limit virtually anything overhead. Getting in and out of shirts some days felt like such a chore. I eventually abandoned all pursuit of further treatment, I was so burnt out from thinking about it all. But with every single practitioner, I noted I was having both fine and gross motor control issues in my left arm, some as early as last April. Texting felt clumsy, typing was awkward. We chalked it up to whatever the shoulder issue was and moved on with life. It will eventually get better, they said.

Then in the last couple of months, I noticed my balance was ever so slightly off-kilter. Nothing major, but I was a little more wobbly doing single-leg squats and step-ups on a box in the gym. I would go to change pants and would find myself leaning against the door frame to steady myself. "That's odd," I thought, especially given that I had notoriously good balance.

And then all hell broke loose.

So, no, I didn't see any of this coming (nor do I look back and think any of my healthcare providers should have either).

But God did. 

Exactly none of this was a surprise to him. 

Not a single seizure, not a single staple, not a single scan.

I look back on the past year differently, running through the Rolodex in my mind of decisions I made, things I had started to pull back from or say no to, the ways I had started to shuffle some finances around. All things at the time that seemed fairly innocuous. I had started seminary in the fall, but halfway through realized it was self-inflicted torture and decided not to continue. I had been grousing to my boss for years how bored I was in my job, just going through the motions, wondering if I needed to be looking for a new job altogether, but never felt like there was a clear prompting to move on. I had been making plans for a major vacation to celebrate my 40th later this year, but felt this subtle nudge to not put it off, heading off to Alaska this past December.

I could go on for awhile about all the puzzle pieces that have shifted in my life in the last several years that led to this moment, like God had finally pulled back the veil and suddenly all of those decisions that seemed independent of one another have now coalesced into a single moment of breathtaking clarity.

I now see each and every one of those decisions as accessories to redemption. 

What do I mean by "accessories to redemption"?

Walk with me to the very first page of the Bible and the story of creation. 

It can be easy to read this story and gloss over it, perhaps having become all too familiar to our dull ears, but let's pump the brakes and slow walk our way through this one. 

"In the beginning God created the heavens and the earth. Now the earth was formless and empty, darkness was over the surface of the deep, and the Spirit of God was hovering over the waters" (Genesis 1:1-2, NIV).

From here, God just starts showing off. 

Light. 
Darkness. 
Water. 
Sky. 
Land. 
Oceans. 
Vegetation. 
Plants. 
Sun. 
Moon. 
Stars. 
Creatures in the ocean. 
Creatures on land. 
Birds of the air. 
Livestock. 
Wild animals. 
Man. 

It's a firestorm of creation. 

But God was not creating just for that moment, that singular point in time at the beginning of the world. 

He was already creating all the accessories that would be necessary for the moment that was yet to come.

The moment when his only Son, Jesus Christ, would hang on a cross and die for the sins of mankind.

Yes, on day one of creation he created the night, but he created that night with one eye already on Calvary.

"From noon until three in the afternoon darkness came over all the land" (Matthew 27:45).

Yes, on day two of creation he created the sky, but he created that sky with one eye already on the Pharisees, the men who would reject him as Savior.

"The Pharisees and Sadducees came to Jesus and tested him by asking him to show them a sign from heaven. He replied, 'When evening comes, you say, ‘It will be fair weather, for the sky is red,’ and in the morning, ‘Today it will be stormy, for the sky is red and overcast.’ You know how to interpret the appearance of the sky, but you cannot interpret the signs of the times'" (Matthew 16:1-3).

Yes, on day three of creation he created the water, but he created that water with one eye already on the water that would flow from his pierced side. And yes, on day three he would also create trees, but he created trees with one eye already on the tree that would someday become his cross, and he created the land with one eye already on the land that would be terra firma beneath that same cross.

"Instead, one of the soldiers pierced Jesus’ side with a spear, bringing a sudden flow of blood and water" (John 19:34).

Yes, on day four of creation he created the stars, but he created those stars with one eye already on the star that would guide the wise men to the baby born in a manager in the tiny town of Bethlehem.

"After [the wise men] had heard the king, they went on their way, and the star they had seen when it rose went ahead of them until it stopped over the place where the child was. When they saw the star, they were overjoyed" (Matthew 2:9-10).

Yes, on day five of creation he created the whale, but he created that whale with one eye already on the whale that would swallow the prophet Jonah, serving as a sign of Jesus' own death, burial, and resurrection. 

"[Jesus] answered, 'A wicked and adulterous generation asks for a sign! But none will be given it except the sign of the prophet Jonah. For as Jonah was three days and three nights in the belly of a huge fish, so the Son of Man will be three days and three nights in the heart of the earth" (Matthew 12:39-40).

Yes, on day six of creation he created man, but he created man with one eye already on man's brokenness and need for a Savior.

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life" (John 3:16).

And yes, on day seven of creation he rested, but he rested with one eye already on the ultimate day when his own Son would declare on the cross, "It is finished."  

"When he had received the drink, Jesus said, 'It is finished.' With that, he bowed his head and gave up his spirit" (John 19:30).

One day after another after another after another, at the dawn of time, God was supplying the necessary accessories to redemption that was yet to be.

God was not merely creating for the then and there.

He was creating for the here and now.

What he created at the foundations of the world, he did so for the purposes of Calvary and for the purposes of today.

David Murray says in his tremendously insightful book Jesus on Every Page:

When Jesus picked up these [accessories] some four thousand years after their creation, they were not just coincidentally helpful to Him; He deliberately created them for the great end of helping to redeem a people. And think of how Jesus even created what would be used in His own crucifixion. What did He think when He made the trees, one of which would one day suspend Him between heaven and earth? What did He think when He made the metal that would eventually impale Him on the cross? He made what would be used to cause Him pain and kill Him. He created all the accessories of redemption.

And what he has been doing in my life for years wasn't just about moments back then - they were about these moments today, here in the midst of brain cancer.

God has been setting the stage all along for the redemption of my life. Just as he set the stage during creation, he has set the stage now for this story unfolding in my corner of the world.

And it is masterful in its perfection and scope because he himself is perfection.

There is not a single square inch or millisecond of my life - or your life - that has not been planned and prepared for by a holy and righteous God. 

Not.a.single.moment. 

“The God who made the world and everything in it is the Lord of heaven and earth and does not live in temples built by human hands. And he is not served by human hands, as if he needed anything. Rather, he himself gives everyone life and breath and everything else. From one man he made all the nations, that they should inhabit the whole earth; and he marked out their appointed times in history and the boundaries of their lands. God did this so that they would seek him and perhaps reach out for him and find him, though he is not far from any one of us. ‘For in him we live and move and have our being'" (Acts 17:24-28).

God made all that is in the world - including you - and then supplied ALL that was necessary for you to SEEK HIM and FIND HIM. 

All that is unfolding in my life right now has been ordained by God - and by extension, that means he has also supplied all that is necessary for me to endure what he has ordained.

Because God is a God who supplies all of the necessary accessories to redemption, from the first day of creation until now and for all eternity. He wastes nothing. 

Including brain cancer.

(Thank you David Murray, for your brilliant book Jesus on Every Page, which I read over a decade ago but so clearly lingered with me that it inspires and provokes me even now.)

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I had a follow-up appointment today with the neuro oncologist at the original hospital I was admitted to. So, I've now seen both this doc and a separate neuro oncologist at Ohio State for a second opinion. They are of very similar mindsets, but I'm still weighing information and doing my homework. Decisions regarding treatment are imminent but not urgent. Because this cancer is low grade and is not fast-growing, it's actually working in my favor, giving me some breathing room to step back and methodically work through information and options. I don't feel like my back is against the wall, feeling hard-pressed to make a decision ASAP about what comes next. Yes, we need to keep moving, and I need to keep sifting, but not at a breakneck speed.

For those of you who want to geek out on the science, my official diagnosis is an oligodendroglioma, WHO grade 2, IDH-1 mutation, with 1p/19q co-deletion. The Cleveland Clinic has a good summary overview of the essentials if you want to read further. And if you want to geek out even further, my dear friend Ruth supplied me with this guide from the National Comprehensive Cancer Network, which is also helpful. 

In terms of immediate next steps, some more MRIs have been ordered, including a functional MRI, which is going to give us another look at how much the steroids have been helping to diminish the swelling around the mass itself. The doctors keep noting that I have a particularly large mass, but the MRIs do not show defined edges to my mass, just that it's big. Ideally, the steroid will have reduced the swelling, and we can get better imaging here in the next couple of weeks.

#StakesTrumpStaples

As a side note, I do want to offer up this podcast I found very helpful, coincidentally just released a few days ago. I so wish I could sit down with each one of you and have a good heart-to-heart about all the little nuggets buried within this episode. I'm not a huge podcast listener, but there are a select few I follow and listen to semi-regularly, one of which is called "The Good Faith" podcast with Curtis Chang. It was originally co-hosted with Curtis and journalist David French, but David has since moved on. In this particular episode, however, Curtis and David's wife, Nancy French, talk through Nancy's own recent cancer diagnosis. It was a helpful episode, mainly because they painted with broad strokes about how we talk about death, grief, and cancer in our culture, something we Westerners do not do well.  I encourage you to give it a listen.

I'm still contemplating what to do with my one lone staple, but after I wrote this piece the other day, the Lord brought to mind this Christmas ornament my parents bought me in recent years. It's a hand-forged pewter nail called the Christ Nail from Wendell August (sorry to say it's not for sale on their website anymore! Maybe only at Christmas??). I pulled it out of storage and snapped this photo of the staple next to the stake. I set the image as the background to my phone, a reminder that the stakes driven into the hands of Christ on the cross far outweigh any staples punched into my head.

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your name directly in the body of your comment? That way I know who you are!

Shadows, Sunlight, and Carbonated Holiness

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.
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Some people might have spent the days and weeks proceeding a cancer diagnosis anesthetizing themselves with the saccharine sweetness of Hallmark or some such escape, or drowning in the abyss of alcohol or any other sort of numbing agent. We are all unique and we all process differently, so I'm in no position to judge. 

But my own personal response?

I made a beeline for balrogs and wargs, orcs and Uruks, hobbits and wizards, "epic battle sequences" and armies of the dead. I've spent the last three evenings rewatching the entirety of The Lord of the Rings trilogy for the umpteenth time, much to my mother's concern and consternation.

I am by nature more at home with the bittersweet, melancholy, and quiet, drawn far more to shadows than to sunlight. (Susan Cain's books Bittersweet and Quiet: The Power of Introverts in a World That Can't Stop Talking have been tremendously helpful in making sense of my own wiring. I highly recommend both.)

My precious friends Jeremy and Emily sent me a lovely bouquet of flowers while I was in the hospital. I drafted a thank you note to them in response, telling them that it was friends like them, friends who have sat in the shadows themselves, that I will need most in this season of life. I will need friends who have traced the contours of their own dark night, memorized its form, studied its stillness. I will need friends who have plastered their faces to the floor, inhaling carpet fibers through their noses, masked their tears in the veil of the shower. I will need Jeremy and Emily, Cindy, Siobhan, Derek, Travis, Venita, Kristina, and countless others who have been well-acquainted with the night, each for their own reasons and in their own seasons.

Because these will also be the friends who will remind me that the shadows won't last. Not forever, at least, and they certainly won't do it in a toxic positivity kind of a way, a mere sending of “positive vibes." But rather in a way that has been tempered and tried by their own crucibles. They will be the Sam's to my Frodo, reminding me that even darkness must pass - and that there is still some good in this world worth fighting for:

It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going, because they were holding on to something. That there is some good in this world, and it's worth fighting for.

My new favorite sweatshirt,
compliments of Cheryl, a fellow Lord of 
the Rings fan

But I also need the friends who will be court jesters, the ones who come with their humor, snark, and occasional irreverence. Despite the catalyst for the resurrection of communication, it has been an absolute delight to hear from people I have not spoken with in years. Former co-workers from my days in Missouri, old friends from my previous church, an assortment of people surfacing from the nooks and crannies of my past lives. 

One such person was Amanda, a former co-worker of mine when we were both grad assistants in Student Life at William Woods University. I hadn't heard from her in years, but we found ourselves texting recently, reminiscing over the ridiculous stunts of fraternity and sorority members gone rogue. I've been a pretty straight-laced person most of my life, and she joked, "Maybe if you had acted more like the monkeys and pumas [our nicknames for the wayward Greek life students among us] in your youth and done alcohol slip and slides, it would have warranted a few ER visits in your 20s. 😂" 

Yes, maybe I should have been more wayward in my youth so that Flash could have been discovered sooner. 

And Cheryl. You're a hot mess in your own right, young lady. But I have worn the sweatshirt you bought me nearly every day since. Because, yes, one does not simply walk into Mordor. Especially if you're prone to seizures and have balance issues. 😆

As much as I need the friends in the shadows, I need the ones in the sunlight, too, coming with their grace, strategic sarcasm, and tactful humor.

As Anne Lamott said in her book Plan B: Further Thoughts on Faith, "One secret of life is that the reason life works at all is that not everyone in your tribe is nuts on the same day.  Another secret is that laughter is carbonated holiness."

I will need a lot of carbonated holiness in the days to come. 

(But I will also need not everyone in my tribe to be nuts on the same day.) 

The fact of the matter is that none of you will be able to carry what is before me. 

This particular story, in this particular time, will be mine alone to bear. 

But you can carry me, just as Sam carried Frodo, just as Jesus carries me.

I will need friends of all kinds in the days ahead. 

So, whether you come with your own shadows, sunlight, or carbonated holiness, come.

I will need you all the same.

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I have a follow-up appointment with the neuro oncologist from the hospital next Monday, where we will continue to discuss and review options. I also have an appointment scheduled to get my knee checked out, make sure I didn't jack that up in addition to my brain. It still feels a bit puffy and doesn't quite straighten all the way, but it is decidedly less black and blue these days.

Sleep does seem to be improving, for which I am very grateful. Flash's office hours seem to be diminishing from 11 pm - 4 am to more reasonable hours of maybe 11 pm - midnight, and then a few scattered moments throughout the night.

I'm restricted from driving for a minimum of 3 months, but my parents make for amazing Uber drivers and we've been able to still get out and about on occasion to run errands and pick up things at my own house as needed. My body still doesn't feel entirely like my own, but it seems each day, it grows a tiny bit steadier.

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your name directly in the body of your comment? That way I know who you are!

The One Song I Needed Most

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.
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I crawled onto the platform that would feed me into the MRI tube, wrapped in starchy, mechanically-warmed hospital blankets. The staff popped ear plugs into my ears, layering headphones overtop. They placed a bracket around my head and then slowly rolled me into the machine, the space around me becoming dark, narrow, and confining. 

I closed my eyes, trying to drown out all the whirring and humming around me.

I felt the tears coming in hot, pooling behind my eyelids, the emotions threatening to take over. 

What kind of music do you want to listen to? the tech asked.

Shane & Shane, I said. 

The music started playing and the tears came full force.

"Out of the depths I cry to You
In darkest places I will call
Incline Your ear to me anew
And hear my cry for mercy Lord."

Of all the songs - of all the songs - that could have played in that precise moment when I was getting a scan done of my brain that would map the topography of all the newly-discovered chaos housed in my skull, God, in his sovereignty and wisdom, played the one song I most needed to hear.

"I Will Wait For You (Psalm 130)" by Shane & Shane. 

I looked back in my iTunes purchase records yesterday. I purchased this song almost two years to the day of that MRI. I had been listening to it obsessively for some time, even two years ago. Shane & Shane have long been a staple in my music inventory, ever since I was in college twenty years ago.

But it wasn't until I was in that MRI machine on February 3 that I became acutely aware of how those lyrics would become the very air I breathed. As the song played, I felt myself echoing the lyrics, filling in the spaces between with my own thoughts.

Out of the depths I cry to You

Out of the belly of this hospital, I cry to you

In darkest places I will call

Yes, here especially in these shadows, I will call

Incline Your ear to me anew

And hear my cry for mercy Lord

Dear God, hear my cry for mercy

Were You to count my sinful ways

How could I come before Your throne

Yet full forgiveness meets my gaze

I stand redeemed by grace alone

I will wait for You, I will wait for You

Yes, even here in this suffocating, confining space, I will wait for you

On Your word I will rely

On what else could I possibly rely?

You're all I have

I will wait for You, surely wait for You

Till my soul is satisfied

Yes, I will wait for you

More than watchmen wait for the morning,

I will wait for you, 

Even here in this unknown space.

So put Your hope in God alone

There's no other alternative

Take courage in His power to save

Completely and forever won

Yes, completely and forever won,

Of this I'm confident

By Christ emerging from the grave

I will wait for You, I will wait for You

On Your word I will rely

I will wait for You, surely wait for You

Till my soul is satisfied, oh, ooh

Satisfaction is found in you alone.

You are my hiding place among the shadows.

Now He has come to make a way

Jesus, make a way where there is no way

And God Himself has paid the price

That all who trust in Him today

Find healing in His sacrifice

Healing can only be found in you

That all who trust in Him today

Find healing in His sacrifice

I will wait for You, I will wait for You

Through the storm and through the night

Through this storm, come what may

I will wait for You, surely wait for You

I will wait for You, surely wait for You

For Your love is my delight

Yes, your love is my delight

Even in the midst of sorrow

I will wait for You, I will wait for You

On Your word I will rely

I will wait for You, surely wait for You

Till my soul is satisfied

I will wait for you

Through the storm and through the night

Because satisfaction is found in you alone.

God knew best what I needed to hear in that moment. He knew the words that would be the balm to the wound, the words that would steady me, anchor me, stop me from coming apart at the seams altogether.

Out of the depths I cry to You

In darkest places I will call

Incline Your ear to me anew

And hear my cry for mercy Lord

In the darkest places, the Lord did indeed hear my cry for mercy.

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If you want to eavesdrop on some more of my favorite tunes, I've got a YouTube playlist that I started years ago when I was in the midst of a significant mental health crisis. I've returned to these songs time and time and time again, especially during these sleepless nights as of late. If you want a broad collection of Shane & Shane, visit them on Spotify. "Psalm 90 (Satisfy Us With Your Love)" has been another one of theirs that I've been listening to nearly every morning.

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your name directly in the body of your comment? That way I know who you are!

An Apology Twenty Years in the Making

My childhood dog and best friend, Bubbles,
looking a little fresh and a little flat
up top. So sorry, sweetheart.

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.

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Bubbles, I'm sorry for all the terrible haircuts I gave you when I was a kid. I was unwittingly unaware of the extent to which I made you look like the grizzly in The Great Outdoors, complete with a flat top that made you look as though you'd been scalped. I probably should have sharpened those clipper blades more often.

You deserved better, you poor thing. 

Thankfully, my neurosurgeon was a better barber to me than I was to you. Hopefully heaven has since procured a more accommodating stylist for that shaggy coat you had. 

When I found myself in the ER two weeks ago, flattened by seizures and the subsequent news of a brain mass, a brain biopsy was rapidly scheduled. 

And God bless the sweet ER nurse who had the wisdom to warn me early on that some of these neurosurgeons do not make for good barbers. 

And much like Mary after giving birth to Jesus, I "treasured up all these things and pondered them in [my] heart" (Luke 2:19) until it came time for the biopsy surgery.

I was wheeled into pre-op early Monday morning, with the occasional nurse scurrying in and out, the anesthesiologist poking his head in on occasion, everyone moving about quickly to get things set.  

And then walks in the neurosurgeon. Nice guy. I was a fan early on. He explained what would happen and what to expect, and then I shamelessly commented:

Doc, I hear word on the street that you don't make for a very good barber.

He got a little sheepish and smiled. 

I've always secretly wanted an excuse to shave my head. Who knows why. 

But I wasn't necessarily ready to lose all of it (or even a large swath of it) just yet in that moment just because some neurosurgeon decided to run errant with some clippers.

I really did not want to come out looking like my childhood dog post-op. 

Bubbles, on a non-buzzed day

And let me tell you, after surgery, nearly every nurse I had would walk in my room and marvel at how precise the surgeon had been with the incision, like some sort of stunning turn of events had occurred within the hallowed halls of the institution beyond just saving people from cancer. The daily headline might as well have read, "Woman Endures Brain Surgery with Nearly Complete Head of Hair Still Intact." He removed only - and exactly - the amount of hair he needed in order to make the incision and get the sample. I've been walking around two weeks now with ten staples in my head, but you'd never know it.

So, to my surgeon, tip of the hat to you. I don't know if it's because I said something or not, but either way, I'm glad you didn't leave me missing half my hair. Maybe that time is still to come and I'll finally get my secret wish to shave my head - but not for now. 

Thanks, Doc.

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

The staples came out today! Turns out it's a very underwhelming experience, getting staples out of your head, as advertised by my cousin who is a nurse. One by one, on down the line, the nurse popped 'em out and I didn't feel a thing.

I asked her if I could keep them once she pulled them out, and she gave me a very puzzled expression.

"I worked hard for these freaking staples, so yeah, I'd like the souvenir, please." 

She relented and gave me one. Bless her. 

Who knows what I'll do with it, but I'm sure I'll think of something while me and Flash keep our running office hours between 11:00 pm - 2:00 am tonight.

Energy-wise, I'm feeling a little better everyday. Balance still isn't stellar and my body doesn't totally feel like my own, but I'm able to still work and function independently. Sleep is still hit-or-miss at night, but I do seem to be sleeping for longer stretches, thankfully. I had a handful of friends visit over the weekend, the first I had anybody outside of family stop by. I found myself getting breathless easily just from all the talking at times, so I do find I have to pace myself a bit. 

I have a follow-up appointment with the current primary neuro oncologist slated for early next week, where we'll go over all of the updated pathology reports and keep gathering details on possible treatment options. I've essentially got dual tracks going between the two possible institutions I'll need to ultimately decide between. My family and I are methodically working through the facts, listening to options, and then we'll make decisions about who will ultimately be lead on my care.

Apart from sorting out my brain, I also need to sort out my knee. When the first seizure felled me at the gym, my right knee took a sizable hit, as I must have instinctively gone down on the one leg first to buffer the fall. It wasn't until I got out of the hospital that we noticed I had a pretty vicious bruise the size of a softball just below my knee. It's been awhile since I have seen those shades of black and blue. I think there is still some swelling, as it doesn't lock tight into place when I straighten it. I'll need to get an appointment scheduled with my primary care provider to see about possible imaging for that, as well, just to make sure there isn't something bigger going on there that we are overlooking.

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your name directly in the body of your comment? That way I know who you are!

I Really Should Stop Praying

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.

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My friend Matt and I like to take up residence on occasion at one of my favorite spots in Columbus - the Chocolate Cafe (and I'm not exaggerating when I say their salted caramel pretzel brownies have the power to reduce me to tears of bliss).

We found ourselves there for dinner one night this past October, hashing out the ins and outs of life, pondering our jobs, our motivations, our apathies, our indifferences toward certain things in life. I expressed to him how I had been feeling that things just didn't seem to be adding up. I was bored out of my mind at my job. I had started pursuing a master's in seminary as an outlet for my brain, thinking if I turned to the acquisition of knowledge, maybe it would spark something in me, make me feel alive.

Something was off, I told him, but I just couldn't put my finger on it.

I don't know which of us said it first, but eventually words formed, giving summary to my feelings:

I feel like I'm sleepwalking through life.  

That conversation was providential, pivotal. 

Shortly thereafter, I wrote this prayer in my journal:

"God, bring life to the parts of me that are dead. Bring life and renewal. Come, living water, and flow through me. Stir in me. I want to feel your presence again. I want to feel alive. I don't want to be ruled by apathy, with everything feeling like a chore. Fill me, Jesus. Make a way in the desert and streams in the wasteland."

In another entry a few days later, I noted Romans 4:17c, a verse I love, but had completely forgotten about, which makes this qualifying statement about the character of God, "...the God who gives life to the dead and calls into being things that were not."

Putting all those things together, I would go on to write this prayer, copying it to dry erase boards in multiple places in my house:

Every day, I kept praying these words to God. 

Stir where there is stillness.

Awaken where there is slumber.

Speak where there is silence.

Fill where there is emptiness.

Flood where there is barrenness.

Give life to the dead and call things that are not as though they were.

Over and over and over again, these were the words escaping my heart and my lips. 

And now here I am on the other side of that prayer. 

He is stirring.

He is awakening.

He is speaking. 

He is filling.

He is flooding.

He is giving life to all that is dead in me.

If only I had realized the power I had so blithely invoked.

Author Annie Dillard once noted,

“On the whole, I do not find Christians, outside of the catacombs, sufficiently sensible of conditions. Does anyone have the foggiest idea what sort of power we so blithely invoke? Or, as I suspect, does no one believe a word of it? The churches are children playing on the floor with their chemistry sets, mixing up a batch of TNT to kill a Sunday morning. It is madness to wear ladies’ straw hats and velvet hats to church; we should all be wearing crash helmets. Ushers should issue life preservers and signal flares; they should lash us to our pews. For the sleeping god may wake someday and take offense, or the waking god may draw us out to where we can never return. ”

I do not regret that prayer started last October. As much as I joke that I should stop praying, given all the chaos it seems to have produced, those words flow just as easily today as they did then. 

That prayer is still the profound desire of my heart. A cancerous brain mass hasn't shifted those words one iota. I remember a friend from church texting me last year in the wake of her own health fright (I'm looking at you, Jennifer O.), and she basically said, "Whatever this is, if there's fruit from the pruning, I want it."

If there's something to be gained here, a refining in the fire that is for my good and God's glory, I want it. 

But perhaps I should have taken to heart Annie's words sooner and purchased a crash helmet.

Some may look at this cancerous brain mass and see death. 

But I serve a God who gives life to the dead and calls things that are not as though they were.

This is not death.

This is life.

The Waking God has drawn me out so that I can never return to a place of sleepwalking again. 

Time to lash myself to the pew and strap on the life preserver.

I understand better now the power I so blithely invoked. 

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I noted this in my initial post, about how the doctors at the initial institution I went to for care have reason to believe I've had this brain mass for years. The doctor at The James also independently commented on the same thing, only further elaborating that it's likely that I've had this mass since my early twenties.

I'm sorry, but could you repeat that, doc?

Given the nature of this specific type of cancer, which is incredibly slow growing, I'm suddenly questioning the entirety of my adult existence and every poor choice I've ever made. 🤣 🤯

I've also decided to nickname my brain mass "Flash," after the sloth in Zootopia. 

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your name directly in the body of your comment? That way I know who you are!

The Human Form

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.

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If you had asked me ten years ago how I felt about physical exercise and activity, I would have told you it was for the birds. I had grown up somewhat active. I showed horses competitively for about a decade and ran track for a few years through middle school and early high school (4x200 school record, thankyouverymuch). 

Then one day, I woke up and didn't care if I ever ran another sprint in my life, and several years after that, I would also walk away from competitive riding. I took up a desk job and physical exercise became a thing of the past as I started my professional career.

It turns out pain is an incredibly powerful motivator, however. In early 2014, I started experiencing excruciating low back pain. It lingered for months, and I felt like I could barely function most days. I had a little Shetland pony at the time (yes, I'm that little girl who actually got a pony as a kid), and she also was super miserable with what we believe was EPM, a disease specific to horses. I think we both just wanted to lay down in the stall and die together. Just pass the Cheez-Its for me and the hay for her.

On the other side of that misery, I had a startling conviction that I could no longer afford to not take care of my body. So help me God, I was never going to experience that kind of pain again so long as it was within my control. 

I changed my ways and got my rear into a gym. I worked out at one gym on my own for awhile, but I was still getting into trouble on occasion with pain and flare-ups. I needed better support and guidance.

Then in a series of divinely-orchestrated connections, I entered the door of The Human Form Fitness in September 2017.

My life has never been the same since. 

Despite the current cancer diagnosis and the set of metal hardware I'm sporting down my hairline, this is the healthiest I've ever been in my life. I'm more aware and in tune with my body than I ever have been before. You want to talk Whole30, functional movement, strength training, or pistol squats, I'm your girl.

And it's because of this gym. I'm not one to idly offer up compliments and glowing reviews, but I will crow from the mountaintops for as long as I have breath in my lungs how much I love this place. More specifically, the people and the relationships at this gym. This is not your average gym and these are not your average humans. What Stephen and Michelle Ladd, the owners, have created in the space at 1197 Chesapeake Ave is unique and beautiful. 

And when the bottom dropped out on my life on Saturday, February 3, you know where I was? 

At the Human Form, doing a workout. 

The day before my world imploded, I was walking across my kitchen countertops, painting my kitchen. I was home alone, several feet off the floor, surrounded by nothing but the hard edges of counters, islands, cabinets, and hardwood floors. Three weeks prior, I had driven to Indianapolis to help a dear, dear college friend with some childcare for a few days so she could chip away at finishing her master's program. Two months prior, I was in the interior of Alaska, practically hanging out of a helicopter on a sightseeing tour, hours from what would have been adequate medical care. 

But when the moment finally came when all hell broke loose, God, in his kindness and mercy, had me at the one place I would be safest:

The Human Form.

I was surrounded by a class full of people. One of the coaches, Pat, was on hand, leading the workout. Michelle, the owner, was there also working out. If I had been home alone, I'm confident I would not have been able to call 911. I lost all motor control on my left side and I was unable to speak. Neither was I behind the wheel of a vehicle. 

Any other alternative scenario, and I probably would have been toast. 

But there I was, laid out on the turf of a gym that I will forever owe my life. 

To Michelle, Stephen, Pat, Jeff, Lauren, and Jade (and former coaches James, Cam, Haleigh, and Jackie): I'll say the same thing to you now that I said to you on the phone the other day. You aren't just personal trainers. Not to me. You are helping people figure out how to navigate their bodies in such a way as to set them up for a life of flourishing, especially when the bottom drops out. And you do it with humor and wit and compassion and knowledge and care. No matter how hard I try, I will never be able to fully express the depth of my gratitude for you. Never. 

To the other HFF members: I know a lot of you have been asking about me. It's just who you are, to care. Because that's the kind of culture Stephen and Michelle have created over the years, and it's the kind of humans that culture has attracted. I miss you, but I do not miss burpees and bike sprints. Dear Lord, do I not.miss.bike.sprints. I will shamelessly use my brain mass as a get-out-jail-free-card for any and all exercises I loathe in the future. "I'm sorry, Pat, but I am unable to do that burpee. I have a brain mass." "I'm sorry, Lauren, but that Sally Up/Sally Down thing you got going on is utter nonsense. I have a brain mass."

To Rusty, the only reason I'm going through this whole gig is so you can have some time to catch up with my pistols squats. 😜 I will set foot in that gym again some day, but this will buy you some time.

And Atul, I'm gonna need a new nickname. I think this cancer situation has well-outpaced "Rona" at this point. (When COVID first hit, I was one of the first - maybe the first? - member to get the virus in August 2020. Thus, 'Rona became my nickname.)

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I had a consult today for a second opinion at The James, Ohio State University's flagship cancer institute. It was incredibly encouraging. A fire hydrant, but an encouraging fire hydrant. There's still a lot to distill and no decisions have been made about precise course of treatment. I'm still in fact-finding mode. Regardless of what comes next and which institution I choose to pursue treatments with, I believe there is world-class care right here in my backyard that will be able to meet my needs, thereby preventing me (and my family) from needing to uproot our entire lives for me to seek care out-of-town or out-of-state.

Physically, I feel great. Mostly. Sure, a little wobbly and my brain still hasn't entirely decided it's safe to move through the world just yet, but all things considered, I am upright, independent, and functioning. The left side of my body is what got slammed, so my left arm is probably the weakest and most clumsy. Grip strength isn't great. Hard to grasp and turn things. Cutting a mango the other morning was a real chore, let me tell ya. 

Sleep has not been stellar, but last night was the first night I slept for longer stretches of time. My appointment today was lengthy, but we were able to run other errands and take advantage of my energy levels. I do tend to crash by 1:00 - 2:00 pm, but shoot, I was doing that well before all this showed up. Bring on the power naps!

Next major appointment is getting the biopsy staples out next Tuesday. Here's to looking less like Frankenstein. 

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your first name or first name/last initial in the body of your comment? That way I know who you are!

Staples in My Head and Stakes in the Ground

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.

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This is not the first dark road I've walked down with God. 

It's not the first time hard things have come my way.

It's not the first time I've been confronted by what I believe to be true about him. 

I am not finding myself suddenly in new territory, being confronted by a crisis of faith on top of a crisis of health. Yes, my functional circumstances are fresh, but my history with God is old. 

Decades old. 

Roots run deep between me and Jesus. 

I practically came out of the womb going to church. Faith is baked into generations of my family. There have been very few Sundays in my life when my skinny backside has not filled a church pew. (Sadly, the church I attended as a child, one that profoundly marked my family, burned to the ground in 2020.) But it's a faith that wasn't just my family's. 

It eventually became mine.

Jesus became mine. 

In the days I spent in the hospital, I kept telling nurse after nurse, the ones who would sit down to listen and help me process, "I believe God is real. I believe he is good. I believe he is sovereign. And I don't believe hard things change any of those truths."

I am no doubt seeing God in fresh ways in these turbulent days, but in other ways, he is also a God who is now seemingly so familiar to me. I'm not over here feeling like I'm encountering a God who is foreign to me, like some stranger has showed up on my doorstep, leaving me wondering who this weirdo is ringing my doorbell and if I need to brandish a can of mace or not.

I've spent years seeking to know him, love him, question him, chase after him. 

And here in these days, those habits are carrying me. I'm still seeking to know him, love him, question him, chase after him. Cancer hasn't altered the trajectory of those disciplines. 

There have been plenty of moments spread throughout my life, anchor points along the way, of wrestling with God. Something would happen in life and I'd have to sit down and ask myself, "What do I believe to be true about him in this moment?" I'd sink a stake in the ground. 

Something else would happen. What do I believe to be true about God? I'd sink a stake in the ground. 

People I loved would suffer. What do I believe to be true about God? Stake in the ground. 

Friends died. What do I believe to be true about God? Stake in the ground. 

Babies died. What do I believe to be true about God? Stake in the ground. 

Mental health would consume.What do I believe to be true about God? Stake in the ground. 

I pounded stake after stake after stake after stake, laying claim to ground that belonged between me and God. 

I might have a line of ten staples in my head at the moment, but I have an even longer line of stakes in the ground, ones that declare this is ground that belongs to God and God alone. 

The stakes will always trump the staples. 

The

stakes

will

always 

trump 

the

staples.

There is a long line of past moments that have come before, many documented below from years gone by, the ones that prepared me for this moment. I encourage you to give this highlight reel of former posts a glance. If I had to rewrite these posts today, I wouldn't change a word of them. What I wrote a year ago, two years ago, or ten years ago, is still what I would write today sitting on this side of a brain mass and cancer diagnosis.

Then start putting your own stakes in the ground with God.

Find a sledgehammer and start tapping.

One at a time.

• Eucatastrophe (January 2023)
• Smelling Like Smoke (January 2023)
• What Hollows the Mind (January 2023)
• Even If the Answers Never Come (February 2022)
• Why Have I Been Forsaken? (September 2021)
• When Life Threatens to Separate (December 2018)
• Something Greater Than My Fears (June 2018)
• Though You Slay Me (November 2017, this one brought tears to my own eyes, revisiting it)
• The Last Laugh (May 2017)
• For the Ones Who Have Been Licked by the Flames (August 2014)
• But Even If (May 2014)
• Conversations with Dirt (February 2013)
• Joy (February 2012)
• Out of the Darkness (August 2010)

PPS: Want to leave a comment? If you select "Anonymous," would you mind including your first name or first name/last initial in the body of your comment? That way I know who you are!

Welcome to the Middle of the Story

Disclaimers and housekeeping:

• Before anyone thinks I've gone all doom and gloom right out of the gate with my blog title, I've had this blog before nearly 16 years. You're stepping into the middle of my story, not the beginning (and sure as shootin', not the end). I am a writer at heart, and the name "Exiting Gracefully" and this blog were ordained long before cancer ever appeared on the radar. You can read the backstory on the name here. So, don't get your undies in a bunch just yet over the name. I'm not waving the white flag here.

• If you would like to receive email notifications of when I post updates, please sign up here for my email distribution list. If you want to skip that, though, and just passively check the site at your leisure, then I suggest bookmarking the direct link. I have set specific restrictions on the site that do not allow search engines to troll it, so you won't be able to find it if you were to generically search for it via Google or something similar. I personally am not on social media, so you won't find my presence on Facebook, Insta, or X either, but you're welcome to share links and updates on your own profiles as you see fit.

• If you find a lot of typos or jumbled words, blame it on the brain mass. 😂 It's going to be my excuse for everything moving forward. 

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Well, shoot. I turn 40 this October, and while I have been reflecting on the matter for some time, I certainly did not envision the spectacular crash landing that has occurred here on the front porch of such a milestone. Good gravy. I got my hair blown back in a metaphoric windstorm and somehow wound up with a line of ten staples down the center of my head as a result. I'm feeling very Frankenstein these days. 

Yep, definitely didn't see forty-years old looking quite like this. 

On February 3, 2024, I found myself at the gym, minding my own business, doing my usual Saturday morning workout. I was moving through the workout, feeling fine, and then I did a side lunge and suddenly felt light-headed. And then I felt dizzy. I stood still for a minute to get my bearings. And then I felt my left arm contract, sticking straight out to the side of my body, losing all motor control. And then I was on the ground having a seizure, something I had never experienced before in my life. I was conscious the entire time.

I remember the coach standing over me, yelling for help, and I remember the gym owner calling 911. (I will eventually dedicate an entire post to this specific gym because I LOVE this place and they have literally changed my life, and not just because of their care for me in this specific moment. If you live in the Columbus area and are looking for a gym, I can't say enough good things about them.)

The medics arrived, I was wheeled out on a gurney, and I found myself at the local hospital within a matter of minutes. Once in the ER, doctors did an immediate CT brain scan, and before I could even get ahold of my brother (my parents were vacationing in Florida and I knew there was nothing they could do, so I called one of my brothers as the next line of defense. Thankfully the owner of the gym had followed me to the hospital, so I was never alone), the doctor rolled in and delivered the news:

"The CT scan shows you have a mass on the right side of your brain."

Uh, let me put you on hold there, doc, and we come back to that one.

My brother arrived eventually and another seizure ensued shortly thereafter. Again, I lost all control on the left side of my body. He was holding my hand but I couldn't feel it. My left leg had fallen off the side of the gurney but I didn't know it. The tears were coming in hot. 

I was admitted to the hospital and I spent five days there. Within 48 hours of arriving, I had a brain biopsy. Within another 48 hours of that, the pathology report arrived:

Glioma. Grade 2. And given how slow this type of cancer grows and how large my mass is, doctors have reason to believe the cancer has been there for years. 

Years. 

Plural. 

It's only now that things finally started to break and the monster showed its true colors.

I was put on anti-seizure medication and a litany of other medications and released on Wednesday, February 7. For safety purposes, I came to my parents' house and will remain here indefinitely. 

For now, we are still somewhat in a holding pattern while we wait for part two of the pathology report, which will give us more nuanced insights into the specific DNA and biomarkers of this cancer. I will have my staples removed on February 20 and will then have a follow-up appointment with the neuro oncologist on February 29. No specific treatment conversations have been had yet but those will come in time. The doctors have talked in generalities that chemo, radiation, and further surgery are all on the table. I will seek second opinions and multiple lines of providers.

Physically, I am in no pain and am taking no painkillers. I'm unsteady and a little clumsy but I can walk, talk, eat, shower, and do a lot fairly independently, but still usually within reach of someone as a safety net. Mornings are best for me (they were even pre-brain mass) and I can tell when fatigue sets in, as my left side starts to contract more. Sleep feels nearly impossible at night, my brain deciding to keep office hours usually between 11 pm - 3 am.  

No more seizures have occurred since the last one I had immediately post-op, but the anti-seizure medication should stave off future occurrences. Because of the seizures, I'm on driving restrictions for a minimum of 3 months. (Don't worry, Subie Wan Kenobi, I'll come back to you eventually.)

I work for an INCREDIBLE organization with an INCREDIBLE boss and an INCREDIBLE TEAM. I plan to continue working as I'm able. I work for an organization focused on autism and disabilities as a conference and event planner, so by nature there is an incredibly compassionate and understanding culture baked in. I have their full support and feel no stress about managing my job. 

I also have an embarrassment of friends and family who care deeply for me. An embarrassment. My cup runneth over even though my brain hath goneth on strike. My parents are saints, and my brothers and their families, and my aunts and uncles are circling the wagons.  

I know people have a lot of questions. I do, too. Answers will come in time. 

But here's what I want people to know above all else:

This is a story first and foremost about Jesus. 

The lede* here is not cancer. 

It's not a brain mass, it's not chemo, it's not radiation, it's not death.

It's Jesus.

And only Jesus.

"Should I ever be abandoned, should I ever be acclaimed, should I ever be surrounded by the fire and the flame, there's a name I will remember, there's a name I will proclaim, let it be, let it be Jesus."

This is the fire and the flame. 

So, let it be Jesus.

*Yes, it's lede, not lead. I might have a brain mass but I haven't lost that part of my brain just yet so you're probably going to still get an occasional vocabulary lesson in these here literary parts. 😋