I Get You Now, Dolly Parton

About a month ago I nearly fell out of the shower. This would have been when I was still on the heels of four seizures in two weeks, so my balance was understandably not great. In that split second, I had a flash bulb moment and realized the name of the book I will never write: The Harrowing Tales of Brain Cancer: What They Don't Tell You in the ER, OR, or NCC. ("NCC" stands for the neuro critical care unit, which is where I have spent the bulk of my time when in the hospital.) I texted this to my friend and former coworker who has been on the receiving end of the anecdotes of my most undignified and ridiculous moments in the last 5 months, some of which I'll share below, and some of which I will never share because, quite frankly, it's TMI. Despite posting the ins and outs of my life for the past five months, even I have limits.

So, in honor of that flash bulb moment, below are some of the more comical behind the scenes moments to my life in the last five months, of which no one in the ER, OR, or NCC thought to warn me about:

• I now understand Dolly Parton. Since the 1980s, the woman has slept in a full face of makeup for fear of something happening in the night and she would be caught not looking like herself. I haven't been sleeping with a full face of makeup on since my diagnosis, but I have become slightly rabid about shaving my legs. I had a hole drilled in my head and 10 staples in February, and all I could think about was getting my hands on a razor to shave my legs. I've shaved my legs more frequently in recent months than I ever have before in my life for fear I'll wind up unexpectedly in the ER again with unshaven legs.
• A few weeks after my craniotomy in April, I noticed what appeared to be these dark mole-like marks along my incision. I went to my routine post-op appointment in May and inquired about it and the nurse very casually said, "Oh, those are probably your dissolvable sutures from your second layer of skin popping through your scalp." Come again? I have dissolvable stitches in my head? Apparently during a craniotomy, they cut your scalp and then a second layer of skin before they cut open the bone plate of your skull. Then they just put all those pieces back together in reverse order when they are done. That second layer of skin gets dissolvable stitches. So, as the top layer of scalp heals, it also starts to sink and settle, thus the dissolvable sutures start to poke through your scalp. Nothing to be alarmed about. Perfectly normally to have rubbery, fishing wire-like stubs poking through your head.
• There were two things I thought a lot about while in the hospital for the craniotomy: 1) the glory of God and 2) La-Z-Boy recliners. I won't get into the glory of God right now, but I thought about La-Z-Boy recliners a lot because for the life of me, I couldn't understand how healthcare systems had not formed some sort of exclusive partnership with the recliner company. Hospital recliners are the most ridiculously uncomfortable piece of furniture, even more so when one part of your body doesn't work properly. I was anticipating death by cancer, but not death by recliner. You have billions of dollars in profits and you can't afford semi-decent recliners that don't require an 80-point turn just to lay on your side?
• 
  The neurosurgeon did a great job of minimally cutting my hair after the biopsy. He did not do as good of a job on the craniotomy. I thought he was just going to shave the whole thing during surgery, and I did not have the emotional bandwidth to do it beforehand myself, so I went into surgery with a full head of hair. I came out of surgery with a partially full head of hair; one large swath on the left, a smaller swath on the right. This photo was shortly post-op. There's just no good way to rebound or salvage a haircut like this. (And ignore the giant plate of food. The hospital kitchen clearly misunderstood my order and thought I needed some extra meat on my bones.) 
• There was a super cute physical therapist while I was in the hospital who was a fraction of my age and probably still in college. Meanwhile I looked like a combination of Frankenstein and Donald Trump with a severe combover in one. My balance also still wasn't great at the time. I didn't stand a chance. Want to go for a drunken-like walk down the hallway while you hoist me up with a gait belt? 
• I'm like a two-year old when it comes to naps these days. My tell? My tongue starts tingling. No joke. That's how I know I'm tired. It doesn't go numb, it just tingles. I then have about a 20-minute window before I need to find a bed and pass out. That little habit has only started since I started taking chemo and radiation, though. So, it has to be related somehow to those two things.
• After the craniotomy, I had so many motor control issues, including my eyeballs. I couldn't figure out how to break eye contact with people and would just awkwardly stare. Even if just passing people by, particularly in the rehab waiting room, I would just stare and stare. So, I just got really good at studying ceiling tiles and dead spaces in rooms instead.
• Sleeping in the hospital is generally an elusive dream. And the one place you really need to sleep and recover? The NCC. But sleeping in the NCC is like a mirage in the middle of a sandstorm, trying to climb up a dune in the Kalahari desert. It's a figment of your imagination. I had two IVs, one arterial line, a drain coming out of my skull, a pulse oximeter, 5 heart monitor lines, a blood pressure cuff, two leg compression cuffs, and a catheter. Best of luck!
• If I didn’t have shoulder problems before, I do now. Because I've had so many problems with the left side of my body, I often drift to my left while walking. So, when passing through doorways, I was routinely taking out my left shoulder. My parents could always tell when I was coming and going out of one particular room in their house that has French doors because I would bump into the left door, rattling it. It was like bumper cars, but between my left shoulder and door frames. My eyebrows also are getting a hell of a workout these days. My brain seems to think they might help raise my arm, as I lift my eyebrows a lot when needing my left arm to do something. It's not actually effective, but my brain seems to think it might be beneficial. 🤷 Who am I to argue? I need all the help I can get.
• When I yawn now, my left arm levitates a few inches. I don’t understand the neurology of that, and I asked my occupational therapist and even he was like, "Yeah, that’s a new one for me.” I either hold it down or just let it do its magic carpet ride of levitating tricks.
• When starting chemo, the nurse practitioner emphasized multiple times the need to double flush the toilet when I'm done. My parents' toilet is getting more of a workout than my left arm. I'm always one to question the "why" behind things and I certainly am in this instance. I keep thinking to  myself, "It’s not a freaking bidet or lawn fountain. Is this really necessary?"
• I’m going bald, my eye prescription has changed, and I have to report bowel movements to my doctor on a regular basis (no pun intended). Is this brain cancer or just the realities of aging?  I have also joined the club of those who have to pee at some ungodly hour of the night, as I'm supposed to drink a gallon of water per day. I’m going to turn into a jellyfish by the time the next fourteen months are over.

And all those are just in the last five months. Who knows what other stories I'll have to tell by the time we get through the next fourteen months when my chemo cycles are theoretically done. There are likely more harrowing tales yet to come! Grab your bowl of popcorn!

______________________________

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 continue to make progress physically and cognitively every day. This is still the best I've felt since surgery in April. I'm walking for longer periods of time, I can hold social conversations for longer periods of time, and I'm gaining better motor control each day. I typed this entire post without using dictation or having to revert to using only one hand, which I think is a first?

I'm beyond grateful to God for how he has directly answered my prayers to be "radiant through radiation." I believe he has been faithful to answer that. I was out walking the other morning, and I pulled up the song "Goodness of God." I sang along with it and giant crocodile tears started pouring out. All my life he's been faithful, even now in these hard, sucky months. 

I still have 2 1/2 weeks of radiation left. I have almost entirely lost all the hair on the right side of my head where I have received radiation. I really want to find a barber who can shave in a super cool design on the left. If you know a barber or stylist who can shave art in hair, give me a shout. I figure if we're going to do this thing, we might as well be all guts and glory and just own it, give people something beautiful to look at it. 

I have a routine post-op with the neurosurgeon this week, which is the first I've seen him since April. I'll have a routine check-in with my oncologist the following week to touch base on how radiation and chemo are going.

Prayers continue to be that God would increase all things in my life -  increase motivation, energy, cognition, strength, faith, joy, compassion, patience, etc. I'm so grateful for the army of intercessors who stand behind me and have been joining me in these prayers.

To Whom Shall I Go?

This coming week will mark five months since my first seizure and the diagnosis. Without question, they have been the worst five months of my life. I remember texting my friend Kristina at one point early on, simply saying, "I keep thinking to myself I don't know how I'm going to make it." And at that point, everything felt like the Bermuda Triangle, where things mysteriously disappear but never come out, and all thoughts of the future felt unimaginably risky. They still do at times.

Have I questioned the existence of God in the last five months? You better believe it. Have I questioned his goodness, kindness, and mercy? Without a doubt. Have I wondered if what I have spent most of life believing was utter garbage, a figment of my imagination? One hundred percent. Suffering and hardship will make you question a lot in life, particularly about God and the role he plays in the universe.

I have on occasion looked back over posts I've written in these last five months and had to be honest with myself - Do I really believe what I've written or I am going through the motions, paying lip service to notions that I deep down doubt or just straight up don't believe? I think the greatest seasons of growth in my faith have been as a direct result of being confronted by my doubts and needing to wrestle down the answer to the question, "What do I really believe to be true about God and his character?" I wonder if we don't have faith without doubt, that somehow the two actually go hand-in-hand.

I was processing some of this early on with a counselor I was seeing at the time, and I told her, yes, I do believe all these things to be true about God. Yes, I still believe he's sovereign. Yes, I still believe he's good. Yes, I still believe he has good things for me, even though everything about my circumstances scream that I would be justified in believing otherwise. 

I told her, though, if not God then where else would I go? If not Jesus, then what other alternative would I turn to? Self-help? Worship of nature? Some other world religion? Atheism? 

She then reminded me of the words from John 6:60-69. Jesus is offering up teachings that are super offensive to those who claim to follow him, and they are having a hard time tracking with him. A lot start to abandon him and his teachings because he's so offensive to their way of thinking:

On hearing it, many of his disciples said, “This is a hard teaching. Who can accept it?”

Aware that his disciples were grumbling about this, Jesus said to them, “Does this offend you? Then what if you see the Son of Man ascend to where he was before! The Spirit gives life; the flesh counts for nothing. The words I have spoken to you—they are full of the Spirit and life. Yet there are some of you who do not believe.” For Jesus had known from the beginning which of them did not believe and who would betray him. He went on to say, “This is why I told you that no one can come to me unless the Father has enabled them.”

From this time many of his disciples turned back and no longer followed him.

“You do not want to leave too, do you?” Jesus asked the Twelve.

Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life. We have come to believe and to know that you are the Holy One of God.”

Here his followers are presented with a way out, if they so desired. Jesus had no problem with some of them walking away. He's not surprised by this turn of events. Jesus' teachings are not for the faint of heart. They are confusing. They are offensive. They are complicated. And Jesus knows this. He doesn't shy away from confronting his followers with offensive teachings and exposing their doubts front and center.

That's when he asks the twelve disciples, his closest friends, "You do not want to leave too, do you?"

Does what I have to say also offend you, you who are my closest companions, you who have given up everything to follow me, you who have forsaken family and fortune to commit your lives to follow me, do you also want to walk away now in the face of questions, doubts, and offensive teachings?

And then Peter answers with the gold standard response that has become my own conclusion in these last five months: "Lord, to whom shall we go? You have the words of eternal life. We have come to believe and to know that you are the Holy One of God."

To whom shall I go? If not God, then where else would I turn to and find that it holds the words of eternal life, that offers as complete of a worldview as what the God of the Bible has to offer? There's nothing out there greater than Jesus. Nothing. In 26 years of following Jesus, I have come to believe and know that he is the Holy One of God. 

Whatever doubts I might have or have had can only be settled in one place and by one person: Jesus Christ.  

He alone holds the words of eternal life.

______________________

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.

Welcome back, Sinead.

My hair started falling out Wednesday night from radiation. The doctor warned this would happen sometime in weeks 3-4. It's not straight up bald patches yet, but it's headed in that direction. Large chunks came out in the shower that night, and then I spent my Thursday morning walk pulling at it. By lunch on Thursday, I decided to shave it again. This haircut carried far less emotional angst than when I last did it in  the hospital after surgery. It's just a fact of life now. No use crying in my cornflakes about it all. 

I ended up conducting an accidental experiment yesterday. I usually hit a wall of fatigue sometime between 10:00 and 11:00 am every day, almost like clockwork. Yesterday was an exception since radiation had started, which was odd to me. I've also developed tremors in my left hand since radiation started. It only happens when I extend my fingers or type, so it's not spontaneous or persistent. But yesterday they seemed to get progressively worse through the day. I developed a headache yesterday evening, too, which I really haven't had at all through radiation. I had a growing list of unexpected symptoms all landing on one day, but why?

I go to eat breakfast this morning, pulling out all my morning meds. I have my seizure meds in their own separate daily am and pm containers. Surprise! I forgot to take yesterday morning's seizure meds! 🤦 Note to self: let's not do that again. 

Apart from yesterday's flub, I still generally feel good. I walked yesterday morning for 40 minutes, the longest I've walked so far. I watched an entire 2-hour movie without closing my eyes for an extended period of time. For months, I have struggled visually to sustain leaving my eyes open that long while watching TV, I think mainly from sensory issues and eye fatigue. I still can't get through a car ride without closing my eyes for a portion for similar reasons. It's not that I get motion sickness. It just seems like my eyes get twitchy and need a break. I now also have to wear eyeglasses all the time because my prescription has changed.

Still no seizures since May 30. I was talking with my parents the other night, reflecting on all the chaos these last five months have wrought, and I think the seizures are what carry the most trauma for me. They were so stressful because of their unpredictability and when I had four in two weeks, it was overload mentally and emotionally. I've been unbelievably grateful that God has strung together an entire month of no seizures. 

I've also been able to connect face-to-face with more friends here in the past week, which has felt like a breath of fresh air. It's much easier cognitively for me so sustain conversations these days, so it has felt good to catch up with friends. I still have limits and I do have to call an audible on occasion and vocalize when I reach a cognitive limit, but it's progress from even a month ago. The wonder that is the human brain's plasticity and ability to repair!

I'm still praying for an increase in energy, strength, coordination, motor control, motivation, joy, and peace. I had my first round of blood work at the end of last week, and everything was normal. I'm still praying my blood counts would defy expectations moving forward. 

I do want to clarify some points that have risen in assorted conversations lately. The words "cancer-free," "remission," and "no evidence of disease (NED)" will likely never be part of my vocabulary. I will always have some form of this cancer in my brain until the day I die. Our goal is to be "progression-free." Even the goal of radiation and chemo is not to "shrink" my tumor; it's merely stop it from progressing to a worse grade or growing in general. Shrinking it will be an added bonus if that happens.

Do I still pray that God would rid my body of this cancer? Absolutely. Do I believe he is able? Yes. Will he choose to do so? He alone knows. His answer may very well be no. But just as Shadrach, Meshach, and Abednego declared in Daniel 3:16-18:

Shadrach, Meshach and Abednego replied to him, “King Nebuchadnezzar, we do not need to defend ourselves before you in this matter. If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”

The Day When Everything Changed

Ah, the days of bangs,
gold-rimmed glasses, and clothes
that were way too big for me.
Alas, the hunched shoulders 
haven't changed much.

This coming Friday, June 28, will mark 26 years since my world forever changed. A decision that will quite literally echo into eternity. I even remember what I was wearing at that precise moment, right down to my tennis shoes. I had my then-long, blonde hair pulled back into a pony tail. I had on a red track shirt, a pair of black Umbro shorts, and a ratty pair of red and black Nike's that my mother not-so-secretly hoped would find their way into the nearest dumpster pronto. (I was notorious for wearing my shoes until I practically walked out of them.) There was a band playing that night called Delta Chi. I was 13 years old, a camper at a church camp tucked into the hills of Wilmington, Ohio.

And then Jesus entered the picture and everything changed.

I had grown up in church, hearing the gospel - the "good news" -  numerous times. The bad news was that man was sinful, in need of something outside of himself to redeem and restore him. The consequence for sin is unequivocal death, for all have sinned and fallen short of the glory of God (Romans 3:23). The "good news" was that God sent his son, Jesus Christ, to bring us from death to life. I knew that intellectually like I knew my times tables. 

But there was still a gap in my understanding. That truth had not traveled all the way to my heart. I remember a former pastor of mine saying, "The longest distance you'll ever travel is the 18 inches between your head and your heart." But that night, on June 28, 1998, I finally traveled that distance.

The teaching for the night was from 1 Corinthians 9:24-26:

Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever. Therefore I do not run like someone running aimlessly; I do not fight like a boxer beating the air.

There were 3 campers called up, each representing a different type of runner in the spiritual race Paul talks about here in Corinthians. One volunteer represented the person who was running the race, standing at the starting line, but hadn't actually begun running toward the finish line. Another volunteer represented the person who also was standing at the starting line, but so tied down with their baggage that they made no forward progress, tangled up and waylaid by their sin.

The third volunteer was running all out, heading straight for the finish line, loving Jesus wholeheartedly along the way.

I was the third volunteer.

In a moment of overwhelming conviction, I knew I was anything but the person I was supposed to represent. I identified far more with the other runners in the race. They probably should've had a fourth volunteer, someone who was running in the opposite direction. That would've been the best depiction of my spiritual state at the time. 

And ever since that trajectory-changing moment, I have kept running after him because he is the single greatest thing that has ever happened to me. How could you not chase after and pursue the one who has redeemed and restored all the broken parts of your heart and your life, and not just once, but again and again and again? How could you not love the only one who can reveal your sins and still leave you feeling loved? How could you not love the author of the word that is living and active, words that have the power to transform and change your very nature? How could you not chase after the one who makes all things new? How could you not chase after the one who is your living hope? How could you not chase after the one who promises life for all eternity? He is so precious to me, in a way that I can't fully articulate.

Jesus isn't merely some historical figure or some "good" man. 

He lived a perfect life and did what I could never do. I could never be my own savior. It would never be enough. No matter how hard I tried. He died a brutal, brutal death on a cross. He was placed in a tomb.  That tomb is now empty because he is now alive.

Until my dying day, I want it be said that I lived with Jesus as my one magnificent obsession, that I ran after Jesus wholeheartedly all the way to the finish line.  Will I run perfectly? Absolutely not. I am assured of my salvation and the fact that I will spend all eternity with him in heaven, yes, but I still live in a sin-soaked world and I am still very human.

The same question that was presented to me 26 years ago is the same question before you now: Which runner are you? And what will you do about that?

"Run in such a way as to get the prize." 

Jesus is that prize. He is what's waiting for you at the finish line.

______________________

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 cut up an orange! I walked for 30 minutes! I held a full Yeti tumbler with my left hand! I pulled the lever on the recliner back with my left hand! I opened a package of deli meat! And all by my big girl self! The left arm has moved up from a one-star Yelp review to a solid two-star. ⭐⭐

Since June 17, I've been keeping a notebook of symptoms, exercises, med changes, and improvements, no matter how big or small. And I am marveling at the gains I've been making daily, in awe of how God has been answering so many prayers. Heading into the start of chemo and radiation, I just keep imagining my life becoming a black hole of misery. O ye of little faith! These last two weeks (reminder: I started treatment on June 10, so I'm at the start of week 3), is by far the best I've felt since surgery in April. It almost feels ridiculous to me, looking back, how much things have shifted, especially through mid- and late May when I was repeatedly slammed by seizures (last one was May 30). Stress was through the roof and everything was an emotional cliff. I was on the phone with my HR in the midst, trying to figure out how to get on long-term disability but still carry my health insurance, but what I really wanted to do was to quit my job somehow because I just couldn't fathom how to keep going and juggling the never-ending stream of doc appointments and rehab on top of work.

Are there still days when I think Dang, I hate cancer? You better believe it. Do I think there are still hard days yet to come? Sure. 

But I also see God answering my prayers to be radiant through radiation and my prayers that he would increase my energy, motivation, stamina, coordination, strength, joy, and gratitude. There was the prayer to be like the burning bush in Exodus 3, though I be ablaze with drugs that I not be consumed by side effects. I am so unbelievably humbled and grateful by his workings. He brought to mind the verses from Daniel 9:18-19: 

We do not make requests of you because we are righteous, but because of your great mercy. Lord, listen! Lord, forgive! Lord, hear and act! For your sake, my God, do not delay, because your city and your people bear your Name.

I do not make these requests of him because of my own righteousness but because of his great mercy. For your sake, God, do not delay because I bear your Name. 

My new prayer, as odd as it may seem, is that God would make me like Secretariat, the legendary thoroughbred, when he ran the Belmont in 1973. Why not? I'm not going to have not because I asked not. If God is willing to send talking donkeys (see Numbers 22), fish with drachmas in their mouths (see Matthew 17), floating ax heads (see 2 Kings 6), and all other manner of strange phenomena to display his sovereignty over the natural order, then I've got no problems asking him to make my body like that of a legendary racehorse, one who moved "like a tremendous machine!" (If you never seen the footage of the race, it really is stunning and kind of absurd what that horse accomplished, a record that stands to this day.) May I move like a "tremendous machine" as I move through the remainder of treatment, gaining momentum with each passing day rather than losing it. I want to end the race moving faster than I started (which is another historical footnote: If my memory serves correctly, he started the Derby running at 36 mph and finished running at 39 mph. He got faster as the race unfolded. The exact opposite should have happened. He still holds the record for the Derby, by the way. Read Bill Nack's book Making of a Champion for an excellent telling of Secretariat's story).

Roughly two weeks of radiation and chemo down, four more to go! And then a break from both, at which point, I don't want to see a single medical provider or rehab specialist.

My Sweetest Companions

For as long as I can remember, they have been my companions. They have been with me through elementary, middle, and high school, college, graduate school, and every other season in between. They have been on countless trips with me, whether on a plane to a Third World country as an adult, or on the school bus as a child. They typically smell good and are easy to hold. Some were real winners, and others were total losers. Some were unforgettable, and some were forgettable. They have comforted me, nurtured me, challenged me, and widened my imagination and my understanding of the world around me. They were perhaps always my first love (horses aside).

Books.

The companions to my soul.

Memoirs. Science fiction. Fantasy. Historical non-fiction. Mystery. Adventure. Young adult. Historical fiction. Romance. Biographies. Sports. Inspirational. It didn't matter, I'd read it. I can't say for certain, but I've probably read upwards of thousands of books across my lifetime.

The book I have the most conscious memory of loving first was Island of the Blue Dolphins by Scott O'Dell. My first grade teacher, Mrs. Manley, read the book out loud to our class. I remember being captivated by the story. It still ranks as one of my all-time favorite books, perhaps due to nostalgia more than anything now.

I spent one summer in graduate school taking a break from all digital outlets - movies, radio, music, social media, television - I stripped all of it from my life for a period of three months. I literally put my TV in the closet so as to not be tempted. It was a detox of sorts. Since I had so much free time on my hands after removing all of those distractions, I read somewhere in the vicinity of 30 books that summer. It was the summer I first read Lord of the Rings. I cried when I reached the end of the trilogy, I found them so powerful and epic. I can't tell you the number of times I've read them since then. The entire set certainly ranks as some of my all-time favorite books, without question. (Confession: I did technically violate my own ground rules for that summer, as I pulled out my TV to watch the corresponding movies of the trilogy.)

Each of these thousands of books have shaped me in some way over the decades of my life, even if I don't distinctly remember every character, ever storyline, every title, or every author.

But it is perhaps the latest one that will forever be the sweetest to me.

I just finished reading Between Two Kingdoms by Suleika Jaouad at the recommendation of my friend Kristina. I sat in the recliner as I read last night, seemingly underlining every other sentence in the book. Packed with so much wisdom, so much perspective, her words resonating more and more deeply with the passing of each page. I got to the last page, set the book down, and promptly started sobbing my face off. And not solely due to the contents of the book, although it is stunning in its own right, and I do highly recommend it, but rather because I had completed the seemingly ordinary experience of reading a book, something I've spent four decades of my life doing without second thought.

This past Sunday marked two months post-op. While I was still in the hospital, the speech therapist came in for an assessment. To clarify, speech therapists can address more than just the physical act of speaking, with which I didn't have a problem. In my case she was there to help with cognition. One of the exercises she had me do, she took a piece of paper and wrote a random assortment of letters on three lines.  So, in the image here, imagine there are no letters crossed out and remove the blue line and the circle around the letters on the far left. If you remove those elements, you're left with the version the speech therapist originally handed me. She then asked me to cross out all of the vowels. 

As simple as it seems, this exercise presented a couple of challenges for me. First, I had actually think through what the vowels were. I slowly crossed them off as my brain sorted out what qualified as a vowel. But once I did that, another glaring problem presented itself: I completely missed the "e" and the "o" on the far left, which is why they are circled. I experienced for an extended period of time what's called visual neglect. This is where the brain simply does not register certain parts of the field of vision. In my case, it was everything on the left side. It's not that I was blind, or that my field of vision appeared black, it's just that things were literally not present. My brain could not perceive them or bring its attention to them. Pretty much anything standing off to the left side of my body didn't really appear in my field of vision. 

For instance, I went looking for my water jug at one point. There was a tray table in front of me and then my mom sitting just beyond that, both somewhat to the left of my body. I could see my mom's water jug on her far side, but I asked her if she knew where mine went. With a slightly uncertain look on her face, she pointed to my tray table where my water jug was sitting, basically right in front of me, but my brain did not register it prior to her pointing. It then suddenly appeared in my sight. Think of it like generative AI in reverse. Instead of things getting added or expanded in the field of vision, they were just disappearing in mine.

My text messages from that week were mostly garbage because I struggled so much to read and then also write in response. My eyes had a hard time tracking from one line to the next. Somebody probably should've taken my phone away in hindsight. We turned the captions on the TV just so we could keep the volume down and limit sensory input for my sake, but I couldn't even read fast enough to keep up with the captions, let alone comprehend anything. The prospect of reading pretty much anything, let alone a book, ever again at that point seemed like an impossibility. I, who have spent a lifetime reading books and reveling in words, wasn't sure if I would ever pick up a book again. It was just another layer of grief in an already seemingly endless pile of grief.

Until yesterday.

So, yes, I started sobbing my face off when I got done reading the book. 

The ordinary act of reading a book seemed extraordinary to me last night.

I was overwhelmed with gratitude to God for giving me back this gift of grace. The tears just kept coming. My mom walked into the room, noticed my tears, and was immediately alarmed something bad had happened. One hundred percent of my tears in the last four months have been a result of grief, anguish, and setbacks. So it was natural to assume my tears this time around were a continuation of the last four months.

Except they weren't. 

I'm so grateful to and so humbled by God for his gracious kindness toward me in giving back to me something I thought I had lost.

My sweetest companions have been returned to me.

Yet another reminder that the night won't last forever.

______________________

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.

Five doses of radiation down, 25 more to go. This past week is surprisingly the best I have felt since surgery on April 16, even with having started chemotherapy and radiation. I have more energy and more motivation. I still get slammed with a wall of fatigue about mid-morning, but I've been getting up first thing in the morning and going for walks up and down our driveway, sometimes up to a mile. It feels good to move my body after being sedentary for so long.

I think I envisioned spending this past week laying (lying?) on the bathroom floor, puking my guts out, but that has not been the case. All praise and glory to God.

I've not had any more seizures since May 30, which feels monumental. I think that has gone a long way in providing stability mentally, emotionally, and physically.

I started back to occupational therapy today. The therapist noted that this is probably the best he has seen my left arm since I started back in late April. Most people would not notice the changes, but I see incremental differences in my arm, each of them small victories in their own way. My plan is to continue to see him twice a week for the rest of this month, and then once a week through part of July. Around July 24, I will start roughly a 30-day break from both chemotherapy and radiation, and I plan on taking a break from everything at that point, to truly just rest and not feel like I'm always having to go to an appointment somewhere. Somewhere in that break, we will get an updated MRI to see how things are progressing after this first phase. I will also have my first round of bloodwork this week to see how my blood counts are holding up.

I also started back to work yesterday after taking most of last week off. I was glad I gave myself space to take time last week and simply focus on starting treatment without the added burden of navigating work commitments.

Onward!

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Support for Pelotonia

In 2022, I attended the opening ceremonies of Pelotonia for the first time in support of my friend, Emily, who was also riding for the first time that year. I remember the fray of the crowd as we checked her in, figuring out where she would need to go at the start of the race and how her bike would be shuttled back once she reached the finish.

Me and Sandra at the finish line, 2023

In 2023, I stood at the finish line for the first time in support of my friend, Sandra, as she also was riding for the first time. I remember being overwhelmed with emotion, my eyes getting a little misty as I watched rider after rider cross the finish line, their names being called one by one by the announcer, knowing so many of them, including Sandra, had trained for so long and so hard to cross that line.

And here, now in 2024, I never fathomed the moment that these two would ride in honor of me, that I would be the one with cancer, that they would seek to train long and hard all over again because of my own story.

If you're not from Ohio, you may not be familiar with Pelotonia. It's an annual bike ride where 100% of the proceeds go to support The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute. This year is the 16th year of the ride, and thus far, over $283 million has been raised in support of cancer research.

I first met Emily when attending my previous church, her mop of tight ringlet curls standing out to me. We  were in a women's Bible study together at the time when she reached out to me and asked if we could get together for coffee sometime. I said yes, and discovered a friend who wanted to talk about things that I wanted to talk about, things like faith, traveling, and singleness, among other things. We've been friends ever since. (She’s also known for these amazing custom-made, homemade gingerbread houses she makes every year at Christmas. They really are works of art.) 

My friendship with Sandra took a more eventful, uncertain route. In January 2018, I joined the leadership team for Bible Study Fellowship. There was a regional retreat happening that March, but since I joined leadership mid-year, roommates had already been matched off. Sandra was without a roommate, as was I. So there we were, roommates, virtual strangers, lumped together at the last minute. Other leaders feared for us and whether we would each survive the weekend. We both thought the other one was completely weird. Sandra talked faster than I could comprehend most of the time, and with her thick accent, remnants of her childhood growing up in St. Thomas, I struggled to keep up with her mouth and her mind. She likes it hotter than Hades, and I can't stand the heat. We had a lot of conversations that weekend about the temperature of the hotel room. She's as extroverted as they come, while I tend to be on the fairly introverted side. No one was entirely sure how we were going to survive the weekend with one another in a small hotel room, ourselves included. 

But we did, and Sandra has proven to be the most unexpected friend of my life. She calls me "Roomie" in honor of that momentous weekend, and I call her "Sanka," because I believe her to be the female version of Sanka from the movie Cool Runnings. And the poor thing generally can't find her way out of a paper bag. I've never met someone so directionally-challenged. 

I know financial asks can be weird, but I am going to shamelessly ask if you would be willing to support these women as they ride this year in Pelotonia, in honor of me and in honor/memory of others. This year's ride takes place August 3-4, and these women are currently raising funds to support their rides. I will not see a dime of this money personally (unless the James discovers a cure for my type of brain cancer, then I would be an indirect recipient of these funds.) Please hear me on this, there is no expectation or obligation that you give, but if my friends are willing to ride in my honor, the least I can do is make an ask on their behalf.

There's a third woman riding in my honor and in honor/memory of others, a former coworker of mine, Susanne, whom I first met when I worked at my sorority's (Delta Gamma) Executive Offices, based here in Columbus, back after I graduated from college. She's a gem of a human being, and has ridden all 16 years Pelotonia has been in existence. 

To donate to any one of them (or all, up to you) you can use the following links:

• Sandra: https://www.pelotonia.org/profile/SR849839
• Emily: https://www.pelotonia.org/profile/EE603793
• Susanne: https://www.pelotonia.org/profile/SK0008

Thank you to each of these women for their willingness to train and exert effort to raise money in my honor and in honor of others. I'm so very grateful to have friends like you in my corner. And thank you to anyone who chooses to donate in honor of me or others you know.

Should my body and my brain choose to cooperate, my friends, maybe I'll see you at the finish line this year. 

______________________

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.

Three doses of radiation down, 27 more to go. But I tell you what, this fatigue thing is no joke. Every day since Tuesday, by mid-morning I feel like I've been tranquilized with a dart gun. I'm lucky to have enough energy to get up, eat lunch, and shower for the day. The first few days were surprisingly the best I've felt since surgery in April, but with each passing day the fatigue seems to come sooner, longer, and harder. Other than fatigue, I really haven't had many other side effects, including no nausea or getting sick to my stomach. I also continue to be without seizures, for which I'm very grateful.

I felt my prayers shift a little bit this week. I began asking God that my body would defy all metrics that doctors have proposed - praying that my blood counts would increase instead of decrease, praying that my energy would increase instead of decrease, praying that I would not lose a single hair on my head, whether through radiation or chemo (and not out of vanity, but simply as a reflection of asking God for specific things.)

Fun side note: I seem to keeping have these precious moments with Jesus and music every time I have a  scan of some kind. I had another moment this week during radiation. The first night I took chemo, I was sitting quietly in my room, playing the song "Over All I Know" by Vertical Worship repeatedly. I felt like Michael Jordan preparing for the big matchup, trying to get in the zone.

I go to radiation earlier this week, and I request Vertical Worship music to play during treatment. Know the first song that plays on random? Indeed, " Over All I Know." I needed that reminder in that moment, God is God over all I know, including radiation and cancer. 

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Death + Breath = Life

I sat looking at the line-up of my meds on the kitchen table the other night. Anti-nausea. Anti-seizure. Anti-biotic. Anti-inflammatory. Anti-depressant. And the granddaddy of them all (which does not get stored on the kitchen table, by the way. When your med comes in a bright yellow biohazard bag, you do not store said meds out in the open): chemotherapy, which might as well be anti-everything. Like a logger in the rainforest, it takes a slash-and-burn type approach to your body. Let's just raze this place to the ground. 

Anti-, anti-, anti-, anti-, anti-.

So much against me and my body it seems these days. Is there anything for me?

In a very backwards sort of way, all these anti-meds are, in fact, for me. They are intended to keep me alive, despite their names meaning against.

Similarly, we can often fall into the trap of believing God works this way, always against me, and in a lot of ways, he is. He is anti-pride, anti-greed, anti-selfishness, anti-unbelief, anti-idolatry, among a host of other things. He'll raze your heart to the ground if he has to, unapologetically so.

But he will do that because he is for you. 

In the weeks and months leading up to my life going sideways in February (I even have marked in the header of the section, "Dec. 2023"), in God's providence, he had me camped out in Scripture in Ezekiel 37. For those not familiar with Ezekiel, he was an ancient Israelite prophet and priest who spoke to the Israelites while they were living in exile in Babylon. He wrote to warn the people about their idolatry, but also to encourage them. In Ezekiel 37:1-14, he captures his famous vision of the valley of dry bones, which is a scene where he comes across not just dry bones, but very dry bones. Dead as dead can be. Seemingly no hope of life again. I include the entirety of the segment here because I think it's worth the space and worth the read if you're not familiar:

The hand of the Lord was on me, and he brought me out by the Spirit of the Lord and set me in the middle of a valley; it was full of bones. He led me back and forth among them, and I saw a great many bones on the floor of the valley, bones that were very dry. He asked me, “Son of man, can these bones live?”

I said, “Sovereign Lord, you alone know.”

Then he said to me, “Prophesy to these bones and say to them, ‘Dry bones, hear the word of the Lord! This is what the Sovereign Lord says to these bones: I will make breath enter you, and you will come to life. I will attach tendons to you and make flesh come upon you and cover you with skin; I will put breath in you, and you will come to life. Then you will know that I am the Lord.’”

So I prophesied as I was commanded. And as I was prophesying, there was a noise, a rattling sound, and the bones came together, bone to bone. 8 I looked, and tendons and flesh appeared on them and skin covered them, but there was no breath in them.

Then he said to me, “Prophesy to the breath; prophesy, son of man, and say to it, ‘This is what the Sovereign Lord says: Come, breath, from the four winds and breathe into these slain, that they may live.’” So I prophesied as he commanded me, and breath entered them; they came to life and stood up on their feet—a vast army.

Then he said to me: “Son of man, these bones are the people of Israel. They say, ‘Our bones are dried up and our hope is gone; we are cut off.’ Therefore prophesy and say to them: ‘This is what the Sovereign Lord says: My people, I am going to open your graves and bring you up from them; I will bring you back to the land of Israel. Then you, my people, will know that I am the Lord, when I open your graves and bring you up from them. I will put my Spirit in you and you will live, and I will settle you in your own land. Then you will know that I the Lord have spoken, and I have done it, declares the Lord.’”

I love this passage of Scripture for so many reasons, and there may be future posts covering additional thoughts because when studying it, I took pages and pages of notes and comments on concepts that stood out to me.

But there's one concept in particular, though, that sprung forth me during my time of study, and knowing what I know now on this side of a cancer diagnosis that holds no cure, it was no mere coincidence. As I began tracing the text, I noted: 1) how utterly dead these bones were. No breath, no life, nothing. 2) It's not until the appearance of God's breath that things change, that the dead come to life.

Death + breath = life.

The breath of God is what changes people. Ezekiel is using a rich reference here when using "breath," as it  can literally mean breath, but can also be indicative of the work of the Holy Spirit. So, it's not just the breath of God that changes us, it is specifically the Spirit of God that changes us.

When it seems everything is against us, or anti-us, and that death, spiritually or literally, is against us, we will find that the Spirit of God is for us. He wants to breath life into the dead, to bring the valley of dry bones within us to life.

But why would he go to all this trouble to raise what is obviously and unequivocally dead? The answer is found in verses 6 and 13:

"Then you will know that I am the Lord.”

God will raise all that is dead within us, all that is seemingly anti-life because he is very much for life and because he wants us to know that he alone is Lord.

This is the good news of Jesus Christ as found in Romans 4:17, another favorite verse of mine:

"...the God who gives life to the dead and calls into being things that were not."

God took a look at that valley of dry bones and saw what no one else could: He saw life where there was only death. He called into being things that were not.

The death of us plus the breath of God is where life, true life, begins.

He may raze you to the ground, but then he will raise you to life. 

God doesn't just take bad people and make them good people. He takes dead people and turns them into living people, ones who know he is Lord.

So, when I sit and look at that lineup of medications that are anti-, may they serve as a reminder, however backwards it may be, that God is for me in this time. 

May he bring to life all the parts of me that are dead. 

But that tumor, he can go ahead and leave that on the valley floor.

______________________

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.

Yes, I wore this to my first radiation appointment.
Thank you, Cheryl!

Miraculously, and despite popular fears in the household, I did not spontaneously combust when taking my first dose of chemo pills Monday night. Nor did I start glowing green after my first radiation treatment yesterday. I actually ended up sleeping really well Monday night. I was pretty religious about taking the anti-nausea medication throughout the day, just as a proactive measure. I took it again last night before I took my next dose of chemo, but I did not take any through the night like I did previously. I feel surprisingly well. It will only be the passing of time that will eventually show how hard of an impact the symptoms have on my body, as drugs accumulate. I had this odd prayer Monday night after a few moments of sleeplessness, that somehow I would be like the burning bush found in Exodus: That even though my body might be ablaze with drugs, that God would somehow prevent me from being consumed with symptoms. I'm praying this trend continues.

It's also been nearly 2 weeks since I had my last seizure, praise God. I was referred to an epilepsy specialist, and initially they told me I would not be able to get in until June 26. But they called yesterday, and had an immediate opening, so I was actually able to see the specialist via online appointment yesterday. He was incredibly helpful and informative, and I'm so glad we were able to get in sooner rather than later. We are going to make a slight adjustment to one of my medications to an extended-release version in the hope that helps. 1 radiation treatment down, 29 more to go!

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The One Question I Refuse to Ask

Since the beginning of February, when all these cancer shenanigans started, I have sat through countless medical appointments and encountered at some point nearly 100 practitioners. Between neurosurgeons, neuro-oncologists, nurses, hospital staff, rehab specialists, and second opinions, there is one question I have refused to ask any of them. And I’ve asked a lot of questions in these appointments, make no mistake. I could scroll through the pile of questions I have saved in my phone for quite some time. In one of the appointments I had with the neurosurgeon, I made a point to ask him, “Are there any other questions that we need to be asking that we aren’t?” He hung his head and chuckled a little bit, and he said, “No, of all the patients that I’ve had, I think you’ve been the most thorough in asking questions.” Thank you, I will take that as a compliment.

Friends and family have asked me that one question, but I refuse to ask any practitioner myself. The neuro-oncologist I saw for a second opinion voluntarily offered it up, but the answer is blacked out in my mind and I genuinely can't recall what he said. I'm sure I probably came across the answer when I was doing early research right after the initial diagnosis, but if I did, again, I have no memory of it. Even my own brain refuses to absorb the answer even when blatantly offered. I think it's trying to do me a favor in this instance.

What's the prognosis?

Which is a well-masked way of saying, "How much time do you have left before death comes for you?"

And here's why I don't want to know and why I refuse to ask, and it's surprisingly not out of fear (not entirely anyways):

Whether 10 days, 10 months, 10 years, or I live to be 100, it doesn't matter how much time I have left because I have been living life all along with intentionality. If the end were to come soon, there's not much I'm leaving undone. 

If a friend needed something or I wanted to see them to catch up, I got on a plane and I flew. I got in the car and I drove. Missouri, California, North Carolina, South Carolina, Indiana, Illinois, Minnesota, DC, it didn’t matter. I picked up the phone and I called, texted, or emailed. I've invested hundreds of dollars in postage over the years, sending cards and packages to friends because I wanted them to know they mattered to me, that the details of their lives mattered to me.

If I wanted to travel, I made plans and I went. Kenya, New Zealand, Russia, Guatemala, New Caledonia, Alaska, Jackson Hole, it didn't matter. I figured out how to make it happen.

If there were family functions or gatherings, I aimed to be there. When each of my nieces and nephews were born, I started a journal for them, writing letters to them throughout the years as they grew up. I gave three of my nieces, who are now almost teenagers, their journals last year, scattered with letters I wrote to them and copies of playbills from ballets, dance recitals, and musicals they had been in over the years.

If there were needs at church and I could meet them, I offered to help as best I could, maybe to my detriment at times.

I unintentionally set out to live an intentional life. 

And I'm not offering these examples up so you will hand me a gold star and a pat on the back, but to merely illustrate my point.

I first saw it modeled among my peers in college. (I'm looking at you Cru friends. You know who you are.) And I saw it modeled in the woman who mentored me the last two years of college. (I'm looking at you, Debbie, and all the other women you recruited along the way to care for us college kids.) I saw all of these people love well, serve well, lead well, date well, marry well, and invest in others well, and I saw them chase hard after the heart of God. Not perfectly, but certainly intentionally. I followed them as they followed Jesus. 

These people weren't sitting on the sidelines waiting for others to move toward them first. They determined they would be the ones to move first. I remember my friend, Cassie, saying one time, "I can't wait around for others to make the first move." Meaning we have to spend our lives perpetually moving toward others, rather than waiting for them to move toward us.

I wanted what these people had, even if I didn't necessarily have conscious words for it at the time, or make a deliberate choice about how to live life. I didn't have angels descend from on high or have God give me some grand plan for my life in a dream. There were no five-year, ten-year, or twenty-year plans I had plastered on a glorious vision board. Because, clearly, my entire life blew up in the span of five days this past February. Forget five year plans and forget vision boards. Life never goes the way you think it will.

I saw it in the quiet living, day in and day out, of those peers running beside me. 

And that was a life of intentionality.

Which is why I say I unintentionally set out to live a life of intentionality. I saw it in action in those around me during very formative years in my early 20s.

So, now 20 years later, when I'm asked What's the prognosis for your life? I find the question to have little relevance or bearing on how I will live the remainder of my life, however long that may be. Besides, I'm pretty sure my God is sovereign over my doctors, so they can rattle off whatever prediction they want about my time left on earth, and God can prove every single one of them wrong. That's also why I take the answer to the prognosis question - whatever that answer may be - with a grain of salt. Because nobody knows what the future holds, and putting "MD" after your name doesn't make you "M-Deity."

Now, here's the disclaimer to all this: I realize my singleness has afforded me a high level of flexibility. I'm neither married, nor do I have kids. So, I can pick up and go whenever I please. But yet that is another one of those factors God set before me. God, in his infinite wisdom, has ordained I spend the bulk of my life single. Maybe not forever, but for now. (But what the hell does dating look like anyway when you have a life-threatening illness?!  “Hi, want to go out sometime and have some shots of hard liquor so I can forget I have cancer for a few, despite the fact that I can’t actually have alcohol because of the nine different medications I’m on, one of which is highly toxic? And feel free to call 911 if I have a seizure and lose consciousness. But if I don’t lose consciousness, just call my parents. Oh, and I can’t drive because of these seizures. So, can you pick me up and take me home? And can you have me home by 9:00 so I can take all of these toxic meds? If I order anything resembling chicken or steak, I’m gonna need you to cut up my food because I’ve got this left arm that is a bit disabled. Sound good?" Line disconnects from the other end ... I’m pretty sure that’s a movie Hallmark will never produce.) I have spent the better part of my adult life single and I wanted to be intentional about not squandering that. I haven’t been sitting on the sidelines waiting for a husband to make my life more meaningful or purposeful. I saw this modeled well in my peers, many of whom are indeed married now. But I still watched them do singleness well when they were single. I also watched some friends despise, resent, and rail against their singleness, and I knew I wanted nothing to do with that version of singleness.

I remember coming across a quote sometime in grad school that I took to heart deeply. No clue who said it or where I came across it first, "Between the wish and the thing, life lies waiting." Meaning, between us wishing for something, let's say marriage, for example, and it actually coming to pass, there is a span of life in that gap waiting to be lived. If all we do is navel-gaze and resent that gap, then life will pass us by without us even realizing it, and then we will have squandered that gap. The same could be said of waiting for retirement, waiting for kids, waiting for a promotion, waiting for a house, or whatever else we spend our lives waiting around on.

I did not want that to be true of me.

So, the alternative in my mind was to live with intentionality. 

If you do know the answer to the question what's the prognosis? for an oligodenroglioma, grade 2, don't tell me because I don't want to know. Don't leave it in the comments, don't text me, don't send me the link to some article. If you see me in person sometime, don't work it into the conversation.

Because my intent of living with intentionality until my dying day hasn't changed. It's maybe been disrupted and it requires far more energy, but it fundamentally hasn't changed.

Life lies waiting, even amidst the prospect of death.

______________________

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.

My chemo pills arrived on Friday, and I will take my first ones tomorrow night. My first radiation appointment will follow on Tuesday afternoon. The hard work continues of having to trust God. I wrote on a 3x5 card and posted it in my bedroom: "God is sovereign over my doctors. He is sovereign over my medications. He is sovereign over my body. He is sovereign over all my days." I also posted a card with a quote from my coworker, Tammy, "Even when cancer feels like a full-time job, we have a full-time God." These are things I have to continually bring to the front of my mind, otherwise I drown in the fear and anxiety of the unknowns that are yet to come in the weeks and months ahead.

I have found that the early mornings are best for me motor coordination-wise in my left arm. That's when typing is easiest. It's still not fluid, but it's at least a little easier. I'm having to get very clear about what is most important to me in the course of the day and prioritize accordingly. This podcast featuring an interview with a woman named Suleika Jaouad was tremendously powerful for me. It echoed so many of my own thoughts. (Thank you Jennifer O. for sharing with me). After Kate Bowler, Suleika is my new favorite human being. My sorority sister, Kristina, who's been through three rounds of cancer herself and has been a tremendous guide in my own story, sent me a copy of Suleika's book Between Two Kingdoms. I'm not very far into it, but it has already resonated profoundly.

I appreciate your continued prayers as I take it one hour, one day, at a time. I will be forever grateful for the ongoing support I have received from friends, family, and co-workers. 

As I noted in my last update, communication will be spotty in the coming weeks, depending on how I feel starting radiation and chemo. Hang tight as I get my bearings.