Challenge Accepted

My dad has long been a champion of my writing. He's also long been great at giving speeches and pep talks. Now, whether he would own that talent or not might be a different story, but I've been on the receiving end of quite a few of those pep talks in the last ten months and can vouch for the skill. 

 

But his speech last Christmas might be etched in my memory for years to come. 

 

Our family was gathered around my parents' living room just before Christmas - both of my brothers, their spouses, and their kids. My dad gets up to address us all, and I can already feel the tears coming. Something about my dad when he gives a speech, I immediately feel vulnerable and emotional. He starts by addressing the two youngest grandkids. He then moves on to my other nieces (my one nephew is the lone member of the male species among seven nieces, and now a great-niece was added to the mix this summer), exhorting batches of them as he moves around the room. He starts to say something to me, and then stops, points at me, and says, "I'll come back to you." We all kind of look at each other with raised eyebrows, trying to figure out what that comment was about. He then moves on to both my brothers and their wives, addressing them, offering up wisdom about life and marriage. Then he comes back to me.

 

"I have something different to say to you, Courtney. I have a challenge for you. You have a gift for words. And this is not the first time I've told you that. You know how to put words and ideas together. This time next year, I want you to come back to this family with a book of 52 devotionals, one for each week of the year."

 

The handwritten quote from Staples
in January 2024

At first I really didn't know if I could pull it off. It felt like a lot of writing to me, and I wasn't sure how to lay it all out. Do I pick a theme? Do I write ones targeted toward specific family members or stages of life? Can I really dump out that many words to fill 52 weeks' worth of devotions? How do I tie it all together so that it's not just a choppy bunch of separate entries? What would the title be? I started a note in my phone with some basic ideas that might work for entries, adding to it as ideas filled my head throughout January. I even went to Staples a few weeks before my diagnosis to get some quotes on what it would cost to get a completed product printed and bound, a copy for each family member.

 

But as it turns out, I didn't need to worry about any of that:

 

My previous post was post number 52 since I was diagnosed in February. 

 

I can assure you this was not intentional on my part. (Well, mostly not intentional. I genuinely was not paying attention to the count until about post number 48. Then I started reverse-timing things so that this one would fall around Christmas. But still.) I've been writing this whole time just for the sake of writing, not to achieve a number or to fulfill my dad's challenge. I had bigger fish to fry. After the diagnosis, I had so many things rolling around in my head, and it all needed somewhere to go. And all those words came effortlessly, entry after entry. All 52 of them.

 

When my dad issued that challenge at Christmas last year, neither he nor anyone else could ever have imagined the form those "devotionals" would take. They would take the form of updates on my cancer, reminding my family that their daughter/sister/aunt/niece/cousin was still here - alive. It would take the form of reflections on the sovereignty and faithfulness of God. It would sometimes come in the form of silence as I took a break from the frantic pace of existence. 

So, to my family: I pray these "devotionals" have been an encouragement to you. Perhaps in the sovereignty of God, I wonder if maybe these posts have really been for you all along. Everyone else reading them have just been beneficiaries of a plan that had nothing to do with their edification or encouragement, but yours. 

 

Yes, they have come at a price - for all of us, not just me. But maybe these were words you each needed to hear in some form or fashion.

 

I couldn't have weathered these recent months without each of you. 

 

To Mom and Dad, at 60-something years old and retired, you found yourselves with a new roommate in the form of your nearly-40-year old daughter, freshly minted with a brain cancer diagnosis. You served as my Uber drivers, my chefs, my mail checkers, my lawn care takers, and my hand holders when I had a seizure. You took me to nearly every single medical appointment, learning medical terms you never imagined you'd have to learn (oligodendroglioma, anyone?). I know you'd say it was no sacrifice and you'd gladly do it no matter what, but I know these have not been easy days and months.

 

To my brothers, my sisters-in-law, my nieces, and lone nephew, you all have played a role in my story, no matter how big or small. You have gathered around my deepest pain, wrapping me in your arms and in your prayers. Your presence and patience have mattered deeply to me as I sorted out life with a new version of my body and my brain.

 

So, Pops, challenge accepted. 

 

But do you think maybe we could skip out on any challenges for 2025?

_____________________

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.

Since I last gave an update in November, I started round four of chemo, which is now winding down. (The goal is to do twelve total rounds.) This was also the first round that we opted to raise the dose of chemo, which is the max amount I can take because of my physical size (For those who saw me before all this started: If you thought I was tiny then, shave off another fifteen pounds, which is how much I've lost since April.)

The beginning of this cycle was by far the worst I've felt since starting chemo. It was down right miserable. At one point, I just found myself laying in the bathroom closet, which was near enough to the toilet but still on warmer carpet instead of cold tile. Nausea, vomiting, lots of sleeping, all of it. Even the taste of water made me want to gag. Nothing will top how miserable I felt post-surgery in April, but this was a close second. I struggled to eat because nothing sounded good, and drinking enough fluids was also a challenge. Things started to head down hill on the evening of day four and by day six, I was totally out of commission. (I take the pills only on days 1-5 of a 28-day cycle, and it seems to be trending that day six is a real whopper.) By day ten, I felt right as rain and then have had no issues since then. So, thankfully, the misery was not prolonged, but I'd still prefer it didn't happen at all. I'll see the neuro-oncologist again the first week of January to see what my blood counts are looking like and what the dosage will be for cycle number five.

I was thrilled to find another provider outside of my current healthcare system who focuses on a more holistic perspective than what my traditional providers offer. She was able to refer me out to a functional nutritionist and a functional medicine provider. They are not available until April and May, but I still booked them and asked to be put on the cancellation list should a slot become available sooner. I am a strong proponent of functional medicine, so I was glad to find this missing piece to my healthcare team who works in both the functional medicine space and oncology.

I also scheduled a neuro-psych test, which lasts four hours and will establish some baseline cognitive functioning abilities like short-term memory. We can then use this data in the years ahead for comparison. That originally scheduled out until June, but a slot opened up in March. 

One significant area that continues to be impacted by all of this is my ability to go to church anywhere. The combo of my seizure meds and the chemo still cause me to get drowsy in the mornings, making it impossible to go to church anywhere that doesn't have a service outside of the usual Sunday mornings. I haven't been to church on a Sunday morning since May, which was pre-chemo and pre-naps. I did make it to the Christmas service, but that was at 6:00 at night. I'm on the hunt for somewhere that either has a Saturday evening service or a later Sunday service. But even if that happens, I still have some sensory issues when there's a lot I have to take in visually and hearing-wise. I'm continuing to pray that God would lead me in this area to where I need to be.

All in all, I continue to be so humbled and in awe of God's faithful protection and provision through this process. Yes, even on the miserable days. Thank you to everyone for their continued prayers and support.

Seeing Until We See No More

I've been thinking about Moses a lot recently, particularly how he died. There are some peculiar tidbits in the Bible about the matter, as it says that God buried him and didn't bother telling anybody where he was buried. Apparently God felt it was nobody's business where he buried his friend, "And Moses the servant of the Lord died there in Moab, as the Lord had said. He buried him in Moab, in the valley opposite Beth Peor, but to this day no one knows where his grave is" (Deuteronomy 34:5-6). Being in command of the universe, I suppose God's entitled to do such mysterious things. (I've also heard he's a big fan of doing the opposite, resurrecting a body from a grave and then spilling the beans, telling everybody to not even bother looking for the grave because it doesn't really matter, the body won't be there anyway. Strange being, this God.)

The Bible also notes that while Moses had gone to great lengths to set the Israelites free from slavery under Pharaoh and lead them to the Promised Land, he would not be permitted to enter the land himself because he "broke faith" with God, violating the commands God had set forth for Moses (Deuteronomy 32:48-52).

I can't help but wonder if God had handed Moses a supernatural version of a View Master (remember those things?) and had him click back through images of his life:

A baby in a basket in the Nile.

Click.

Growing up in Pharaoh's palace.

Click.

The burning bush.

Click.

Staffs into snakes.

Click.

Piles of frogs.

Click.

Blood on door frames.

Click.

Parted waters.

Click. Click. Click. ClickClickClickClickClickClickClickClick.

Hundreds, thousands, of images spanning his life rapidly going by. (He's obviously changing out cartridges regularly. Although, this is a supernatural View Master, so maybe not.)

And with each passing image, he's getting closer and closer to the end of his life.

And what are the final images he clicks through?

Then Moses climbed Mount Nebo from the plains of Moab to the top of Pisgah, across from Jericho. There the Lord showed him the whole land—from Gilead to Dan, all of Naphtali, the territory of Ephraim and Manasseh, all the land of Judah as far as the Mediterranean Sea, the Negev and the whole region from the Valley of Jericho, the City of Palms, as far as Zoar (Deuteronomy 34:1-3).

Gilead.

Click.

Dan.

Click.

Naphtali.

Click.

All of the Promised Land.

And with one last slow press and release of the lever, Moses saw all that he needed to see. All of the images of his life culminated in this one final view of the Promised Land. The Master of it all removed the View Master from the hands of his friend. No more clicking. No more images. And just like that, Moses was gone. God had faithfully sustained Moses until he saw all that he needed to see. Better yet, all that God wanted him to see. And he let Moses see it in all its fullness: "And Moses the servant of the Lord died there in Moab, as the Lord had said. Moses was a hundred and twenty years old when he died, yet his eyes were not weak nor his strength gone" (Deuteronomy 34:5, 7). Moses wasn't seeing the Promised Land through a haze of cataracts and near-blindness. His eyes were not weak, it says. He saw it in all its glory, from end to end, valley to valley, sea to sea, with eyes that God created and sustained, and then ordained at a precise moment, and not a moment before, that they should see no more. 

And with that, the slide show was over for Moses.

But wait! It looks like there's one more slide. 

But there's no image.

But Moses knows. He knows what's on that image. He knows he has eyes to see what's on that slide.

Moses saw him who is invisible.

". . . he persevered because he saw him who is invisible" (Hebrews 11:27).

Moses' final view wasn't a view of the Promised Land. 

It was a view of the Promised One.

"The Son is the image of the invisible God, the firstborn over all creation" (Colossians 1:15).

"For since the creation of the world God’s invisible qualities—his eternal power and divine nature—have been clearly seen, being understood from what has been made, so that people are without excuse" (Romans 1:20).

Jesus. The image of the invisible God.

Click.

"But blessed are your eyes because they see . . ." (Matthew 11:16).

Prayers for a Man That May Not Exist

Today marks ten months since my first seizure and the discovery of my brain tumor. A lot has happened in those ten months. A lot. You all have been witnesses to that, whether up close or from afar.

When I look to the past months or to the yet-unknown future months and years, you know what strikes a nerve faster than anything else and immediately brings tears to my eyes at just the thought? (I mean, I just moved the box of tissues closer to me, and there's already a small pile of snotty ones next to that because those tears are already in full swing). It's a question I have asked myself often in these months:

Who is going to want to marry a girl who has cancer for the rest of her life? Who is going to want to live with that kind of uncertainty in his spouse?

It brings tears to my eyes and feels so tender and vulnerable just to write it out, to put it before this small corner of the world that reads these words. 

I remember going to an online support group shortly after the April surgery. I really wasn't sure what to expect. There were maybe 30-40 people. All ages, all different brain cancers, all different stages in their diagnosis and treatment process. As I logged off, I was hit with a startling realization, which at the time included some mental expletives, which I will refrain from using here. I realized I had adopted a short-term view of the circumstances - Just get through the next 14 months, then I'll be done and can move on with life - but where the mental expletives came into play is when I realized this isn't just about the next 14 months.

This is about the rest of my life.

Regular scans to check for any growth or changes, regular check ups with a neuro-oncologist, moments left wondering whether an ailment or symptom really means something more significant is brewing beneath the surface. 

Who is going to want to marry a girl who has cancer for the rest of her life?

As I was driving home from work today, I was reflecting on all that has happened these last ten months. I was also listening to a sermon preached by Louie Giglio back on December 26, 2013. (For you Apple folks, you can find it here.) I've listened to this sermon (it's the third part in a series of three messages) probably every year during Advent since he first preached it eleven years ago. His words have always resonated. But today? They landed differently today. He talks about trials in this life. We know Jesus the Messiah came once and we know he is coming again, but in the middle there's waiting and trials. There's a key statement he makes that helped tremendously in answering my own question about an unknown future husband: 

God is not primarily interested today in making our lives easier. 

He's primarily interested today in making our lives matter.

I realized something in that moment, not for the first time, however: 

I want my life to matter more than I want to be married.  

I'll be okay if I never have a husband, but I won't be okay if I don't have Jesus.   

I don't know if God will so ordain in his wisdom that a man should come along and answer my question and say, "Me. I'm the one who will take the girl with cancer for the rest of her life." 

But should God choose to send such a member of the male species along, then I do have a three specific things I am praying for the guy that decides to answer that question in the affirmative because I want his life to matter, too:

I pray he is a man of God's Word. This is my chief prayer. I want him to love the Bible. (And I want to be a woman who loves the Bible, too.) He doesn't need to be a scholar or a theologian. (I'm a seminary dropout myself.) He doesn't need to have memorized the entire book of Colossians or James or Ephesians (I can barely remember what I did two seconds ago, so I'm in no place to judge), but I want him to be a man in love with the Word of God, someone who is familiar with it, well-acquainted with its pages. I want to know that the man I'm with is actively moving toward the Word with regularity and intentionality, choosing to wrap his life in its pages.

I pray he is a man of his word. I want him to be the kind of man who keeps his promises. I want him to be the kind of man who shows up when he says he's going to show up, the kind of man who honors his commitments, whether big or small, come hell or high water. The kind of man who is going to sit with me in appointments and take me to regular scans. Again, I'm not seeking perfection, but I want someone who is faithful to his promises. 

I pray he is a man of words. Allow me to state the obvious: I love words. They matter a great deal to me. Words are in my nature. I have kept journals for the last twenty-seven years, and have had this blog for nearly sixteen years. I haven't been penning all these words because I thought somebody would read them or because I was trying to build a brand or a platform or make a name for myself. Writing and reading represent some of the deepest parts of my identity. I pray the man I marry would at the very least have an appreciation for words (I'm not saying I want him to be a chatty Cathy, though, either. I know, picky, picky.) He doesn't need to be a bookworm or a bibliophile or the world's greatest writer of love letters. (Although, I would certainly relish it if he were the world's greatest writer of love letters).

I can't see into the future (thank God because I think if I had seen brain cancer coming I would have likely opted out) to know if there is someone to answer the question that is so tender to my heart these days, but even if there isn't, I will still say that I want my life to matter more than I want to be married.

I'll be okay if I never have a husband, but I won't be okay if I don't have Jesus. 

I want my life to matter. And that can happen with or without a husband. 

But it can't happen without Jesus.

There's No Place Like Home

The original house and garage

For those who don't know the backstory to my house, my great-grandfather built it in 1949, which means the grand dame turned the big 7-5 this year. It was originally a one-story-ish house with nothing but open land behind it. My great-grandfather would eventually sell the house to his daughter/my grandmother in the early sixties, and it would become the house where my dad was raised. Sometime in the early eighties, the house was completely reconfigured and a second story was added on, including a second bathroom, a master bedroom, and two spare bedrooms. The stairway was moved, windows were taken out and made into solid walls, rooms were added, etc.  I came along in the mid-eighties, so I only have memories of the second version of the house when the second story was already there.

My grandmother was incredibly fond of blue. Blue kitchen countertops, blue wallpaper border, blue carpet, blue curtains, blue couch, blue accent chairs, blue lamps, artwork with blue as the central color, blue-themed liners to drawers, blue siding. Just so much blue. Everywhere. Like her own version of Picasso's Blue Period, but more than half a century later and in the form of a house instead of a canvas.

I never paid attention to this fondness for blue as a child when my family would visit. I had no reason to. It wasn't until I bought the house for myself several years ago after she passed and thought, "Good heavens, how did I miss this OCEAN OF BLUE all these years?" I wouldn't be surprised if I cut open walls and found blue studs and blue cinder block.

I've slowly been updating the space and sending the many shades of blue on their way. I'm not trying to erase my grandmother's memory, but I am trying to eliminate remnants of her love of blue, one carpet fiber and one curtain at a time. The ocean of blue has evaporated considerably. The kitchen countertops are the last blue thing remaining. (But the kitchen is a giant project unto itself, so I will probably be living with those countertops for awhile.) 

When I first moved in, my grandmother was still alive but in assisted living. My brother and his girls had been living there for a period of time, but he was getting remarried and moving out. I ended up renting it from her (buying it wasn't on the table at the time) after my brother moved on, as my family did not want it just sitting empty and my grandmother's health was rapidly declining and the likelihood of her ever being in it again was slim. 

I never really thought much of the notion of owning a home. It wasn't high on the list of priorities or dreams in life. I was content to rent and had done so for a number of years. But I was also sick of sharing walls with other people, hearing screaming children, trumpeting trumpet players, pouncing cats and dogs,  and incessant Christmas music on loop. It took some time after I first moved in, but I was finally warming up to the notion of owning my own home.

So, when my grandmother passed in late 2021, my father inherited the house, and then turned around and asked if I would be interested in buying it. I was finally in a place mentally that I knew I wanted to buy it and be done with renting. All told, four generations of my family have owned it, and five generations have lived in it at one point or another. I remember when I bought it, I kept praying it would be a place of peace and retreat. 

I just didn't realize I would be the one who would need it to be a place of peace and retreat.

When everything went sideways in February, I moved in with my parents, for both safety and support. I was restricted from driving, so I couldn't go anywhere on my own, and with the seizures still happening, it wasn't really safe to be on my own anyway. I've been living with them ever since, and we all were fully anticipating I would be living with them until the end of treatment sometime next summer.

A more recent version of the house, but that 
blue siding is also gone now.

But by the grace, kindness, and faithfulness of God, I moved back into the house several weeks ago. Far, far sooner than any of us dreamed possible. 

I stood in the kitchen one day here recently, quietly in awe of how much had changed in just nine short months since the original diagnosis. I went from not being able to drive, living with my parents, and repeatedly having seizures to driving again, living on my own, and not having had any seizures since May 30.  I mean, I couldn't even cut up my own food seven months ago after the April surgery. I texted my parents shortly after moving back in and said, "You know I'm feeling overwhelmingly grateful when I thanked God this morning for blue kitchen countertops. 😂"

I have never been so grateful for the shade of my blue in all my life because of what it represents. The space feels so sacred to me now, to be back here in solitude and quiet. (Not that my parents were a bunch of crazy college kids partying it up every night. I've just lived on my own for a number of years and I like my space.) A place of peace and retreat from the mayhem of these last nine months.

Because it meant I was home, back in my own space, experiencing some sort of outrageous miracle. It has felt like one of the greatest gifts of my life to be independent again. Is there a long way to go still? You betcha. Does this mean I'm magically all better and the cancer is gone because I'm back on my own again? No way. 

But now, more than ever, I am acutely aware of the fact that there really is no place like home. 

Blue kitchen countertops and all.

_______________

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 feel exceptionally well. I had an MRI on Sunday and discussed the results today with neuro oncologist. Nothing particularly notable in the scans, other than the size of the tumor is holding steady, which in my case is a good thing. Remember: the goal is not to eradicate the tumor (although, I'm certainly still praying for that to happen), or even for it to shrink. The goal is to stop the progression and stop it from growing into a more aggressive grade. He said today, "Your MRI's could look like this for the rest of your life, and I would be pleased."

Last week was my big work conference, and I am delighted to say that my brain was able to meet the demands of emails and phone calls we had coming in. Did I still have to slowly and methodically work through emails? Yes. I do have to read and then re-read both incoming and outgoing emails. If I get going too fast, I start to overlook things or misread sentences. (But hi, that's also just life.)

I'll have a little bit of a lag with starting round 4 of chemo because of the holiday and the conference disrupting when I should have had my MRI and monthly check-in, so I won't start that until next week.

This Thanksgiving will undoubtedly land differently this year. I am in awe of what God has done and is doing in my life. I will never be able to thank him enough. Happy Thanksgiving!

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

I Can't Even Count 'Em All

Million Little Miracles

Elevation Worship and Maverick City Music

All my life I've been carried by grace
Don't ask me how 'cause I can't explain
It's nothing short of a miracle I'm here
I've got some blessings that I don't deserve
I've got some scars but that's how you learn
It's nothing short of a miracle I'm here
I think it over and it doesn't add up
I know it comes from above

I've got miracles on miracles
A million little miracles
Yeah, miracles on miracles
Count your miracles, 1-2-3-4 

I can't even count 'em all

__________________________

I've got miracles on miracles. One, two, three, four, I can't even count 'em all.

This week marks 7 months post-op. Depending where in the timeline you ask me, I'd say it's been the longest 7 months of my life, and other times I'd tell you it's been the shortest. Looking back on all that has transpired, I honestly can't believe I'm still standing.

But with the passing of time, the gravity of it all continually hits me every day. To see where I was and where I am now is nothing short of a miracle. 

A miracle, people. A miracle. 

To watch me move now, you would have no idea seven months ago I had my skull cut open, had part of a tumor removed, and left the hospital with significant impairments to the left side of my body. Now there is very little I encounter in the course of daily activities that I physically can't do. The left arm has graduated to a solid three-star Yelp review. (I think it will only ever achieve four-star status if I can get my shoulder problem sorted out. I have a new theory on that matter, which may be tied to my diagnosis, but I'm running it by some docs to confirm.)

As a conference and event planner, I have to be incredibly detail-oriented in my work. The conference I coordinate with my two all-star co-planners is next week. The to-do list is long and the pace is frantic. We're hosting over 1,800 people online. My brain is able to keep pace with the frenzy of emails and phone calls. Seven months ago, I was sitting in speech therapy session trying to figure out how to tell time. 

A miracle, people. A miracle.

Seven months ago, life felt like a deep, dark black hole, and I didn't think I'd ever find my way out. I couldn't imagine a future where my life was anything other than grief and sadness. Light has broken through. You were right, Siobhan - the night won't last forever, and there are still a lot of good miles to go.

A miracle, people. A miracle.

I can lift my left arm. 

I can grip and twist and turn things with my left hand.

I can type as fast as I could pre-surgery.

I can wiggle my left toes.

I can drive.

I can cut up an apple without fear of losing a digit.

I can make it through months, not just weeks, without having a seizure.

I can see without experiencing any "neglect."

I've got miracles on miracles, a million little miracles.

Seven months ago, I was hoping to make it out of the hospital alive.

And here I am. Alive.

A miracle, people. A miracle.

I've got miracles on miracles. One, two, three, four, I can't even count 'em all.

Functional updates:

Well, chemo cycle number three should close out the week of Thanksgiving. I still have been feeling exceptionally well with minimal side effects. There are so many things, both big and small, that genuinely feel like miracles to me. I'm still not out of the woods by any stretch of the imagination, but the days feel less like dog fights. I get overwhelmed with gratitude at just the thought of how far God has brought me.

My blood counts are starting to drop. Not drastically by any stretch of the imagination, but certainly enough to make me more prone to infections and such, so I am more mindful of who I'm around and any sort of group event. I bought a t-shirt the other day that says "Immune-compromised. I need space." But maybe I'm just using a declining immune system to cover for my introverted ways. 😉

The seizure specialist tweaked the timing of my meds in the hopes we could alleviate the daily nap situation, but it hasn't really moved the needle. He suggested maybe lowering the dose on the other med, but it would possibly raise the risk of a breakthrough seizure. Without hesitation, I responded and basically said it's out of the question. It's not worth it to me. I still have such a terrible fear of experiencing a seizure again, and I'm not going to willfully elevate that risk just so I can avoid taking naps every day. (I know, you are probably rolling your eyes. Most people dream of taking naps every day. Meanwhile, I dream of staying awake all day! I have taken a nap of some form nearly EVERY day since June 10! Every.day.)

I have my first quarterly MRI the week of Thanksgiving and will meet with the neuro-onc that week as well to review the findings.

All in all, I am feeling pretty stinkin' great and grateful.

_________________
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The Cage of Lesser Affections

I can feel the coolness of the bars pressed against the sides of my forehead. I close my eyes and idly slide my hands down the metal, feeling the slightest prick of a weld gone wrong. I turn my back and slide to the floor, resting against the metal, tilting my head back. It's not so bad in here, I tell myself. There is that one little window, after all, with a little bit of light streaming in. I can still breathe. I can still feel the warmth of the sun on my face. Sometimes. I can still move around. Mostly. I don't go hungry. At least not every day. I'll get out. Eventually.

One rationalization after another. After another. After another.

This is the cage of lesser affections.

Of indifference.

Of apathy.

But these gilded bars are leaving me reaching for wider spaces and freedom, but I can’t figure out how to squeeze between them. If only there was someone on the outside with a key who could set me free.

_______________________

I feel the intensity of the crazy storm of cancer slackening (for now?) and it seems my affections for God are going with it. I feel my prayers drying up. My desire to spend time in his word vaporized awhile ago. I haven't been to church since May (However, in my defense, my mid-morning crash/fatigue comes at the same time church is going on. I'd be sleeping under the pew the whole time, leaving my pastor thinking he's the most boring preacher ever.)

It seems my affections for God are strongest when at the extremes, either when I'm raging against him, wrestling with him over things I don't understand, or the other extreme when I'm so desperate for his presence and need his comfort, hungering for his kindness and peace. 

That space in between is where the lesser affections dwell, where we convince ourselves it's not so bad, that it's okay to turn our backs and just call a timeout on life. And God. The waters are seemingly calm, the pace easy. So, we start to loosen our grip. We explain away our comings and goings.

And all the while, we feel the indifference and apathy pressing in, the bars getting closer and closer together. We settle for the bits of sunlight and the occasional hunger pang. We decide those things are enough to get by in our walk with Christ.

Why? 

Why does it take the tossing of the storm to keep us tucked close to God? 

Why do we start coasting when it seems the waters are calm? 

Why do we need the heat of the flames to stay pressed next to his presence? 

Why does it take the crucible and the crisis to bend us toward the cross and Christ? 

Because we are made of dust. God knows this. "...For he knows how we are formed, he remembers that we are dust" (Psalm 103:14).  He's under no illusions about our sinfulness, our frailness, our weak knees, our feeble arms. 

He knows we prefer the safety of the cage rather than the uncertainty of freedom. He knows we are fickle, feckless creatures. He's not surprised by my ineptness to follow him faithfully. 

On my nightstand, there is a canvas, a painting I made probably over a decade ago. It's embossed with a quote from Lord of the Rings (For those who really care, the original quote comes from book Return of the King, but in the movies, it is scripted into The Two Towers.) It's from a scene where the king of Rohan's niece, Eowyn, encounters Aragorn, the king of Gondor. (They are all on the same side, so it's not a confrontation.) He asks her what she fears, and she says something that has resonated profoundly with me since the first time I saw the movie, "A cage. To stay behind bars until use and old age accept them, and all chance of doing great deeds is gone beyond recall or desire."

Like Eowyn, I, too, fear staying behind bars. To let fear and apathy so take over my life that I settle into the cage, unaware of the prisoner I've become. When use and old age settle in, it's hard to rewind the clock, to go back in time and draw a sword against the indifference that unknowingly becomes so pervasive in our lives. 

That's not how I want my story to end.

Thank God, though, there is one who holds the keys to my freedom, who knows the way out beyond the fear and apathy, the indifference and lesser affections. 

His name is Jesus.

When the storm comes for me, he's walking on water toward me.

When the waters are calm, he's still near, patiently waiting.

When the heat from the flames start licking me, he's there with me in the fire.

When the crucible and crisis seem overwhelming, I can rest in the shadow of Christ and the cross.

I pray to God I do not spend the rest of my life trapped in the cage of lesser affections. (But neither do I want it to always take the extremes to turn toward him.) 

I don't want the chance of doing great deeds to go beyond recall or desire.

I am a daughter of the King, a shield-maiden of his kingdom. 

I do not think that will be my fate.

Because I know the one who holds the key to my cage.

______________________________

Functional updates:

Nearly done with cycle #2! It has been like night and day difference between the first 28-day cycle I had back in September to this one. I've had virtually no symptoms this time around. No nausea, no brain fog, no lethargy, etc. I still totally take a nap every day but I've been amazed at how much better I've been feeling. It was also six months this past week since the craniotomy. I get overwhelmed sometimes at realizing how far God has brought me in that time. Back in April, May, and June, it felt like hell on earth. Back then, I couldn't envision any days that didn't include grief, darkness, and sadness. Oh, me of little faith!

I'm so grateful to have more energy, especially as things heat up with my job heading into November. For those who don't know, I am a conference and event planner, and the conference I co-plan is every November. I have to be on my A-game right now. So, to pull a Hazel Grace Lancaster moment (from the movie The Fault in Our Stars), "I need my [body] to keep its sh-- together."

I meet with my neuro-oncologist this week for my monthly check-in where we review the latest and make decisions about any changes we need to make to the chemo dosages. In November sometime then (just not the week of the conference), I'll have my first scan to see how things have changed with the tumor since my baseline scan in August.

Prayer requests:

• Clarity of mind to do my job and to keep track of the many details I need to between now and the conference
• Continued absence of side effects and symptoms
• Progress toward independence again, being back in my own house, etc.
• Wisdom in how/where to spend my energy
• Renewed/increased affection for God, his word, his presence

General Update: The Good News and the Not-So-Good News

Not-so-good news: A bear killed another bear this week at Katmai, and Fat Bear Week was delayed.

Good news: Fat Bear Week voting is now open! Some of these bears are looking rather rotund, shall we say?

Not-so-good news: I have not been drinking the prescribed amount of water pretty much since Day 1 thanks to a water pitcher manufacturer not knowing how to properly notate how much a quart is. I kid you not, we took our pitcher, which has 1, 2, 3, and 4 quarts measured out on one side. I'm supposed to drink 3-4 quarts per day. Somehow or another, I began questioning whether the lines were accurate on the pitcher. We pulled out a separate quart-size mixing bowl, filled it up, and poured it into the pitcher. One quart of the mixing bowl equaled 2 quarts in the pitcher. 👀

Good news: Thanks to some friends who can do math better than I can, I ditched all of it and just figured out how many Yeti's I need to drink in the course of the day (because I rarely go anywhere without it). Ever since then, I have had significantly less symptoms. 

Not-so-good news: Hallmark makes some sickeningly sweet, cringe-worthy movies.

Good news: Hallmark makes some decent, tear-jerker-worthy movies. See also "The Real West." I was a fan.

Not-so-good news: When I started losing my hair due to radiation, I thought I'd be helpful and expedite the process. I pulled out whole chunks of hair. I'm realizing now this may have been a bad idea. I have a rubbery bald spot in the area where I pulled out those chunks, and the hair isn't growing back. Yet.

Good news: My hair is growing back elsewhere on my head. Slowly.

Not-so-good news: My pre-cancer shoulder pain is back. It feels like I have chased down nearly every practitioner east of the Mississippi trying to get this shoulder sorted out. It's been going on nearly two years, and I'm reaching my wits' end.

Good news: The rest of my arm has moved up to a solid 3-star review on Yelp.

Not-so-good news: I have 11 more cycles of chemo to go.

Good news: I have one already behind me, and I didn't spend it on the bathroom floor. Round #2 starts tonight.

Not-so-good news: The days are getting shorter, and I don't want to get out of bed in the mornings, which means I've also gotten lazier. I just want to stay under the covers and hide. 

Good news: Fall is here and that means so are topaz apples!

Not-so-good news: I still get very anxious about having a seizure and harbor a lot of trauma around the memories. I was in tears just talking about it the other day during my follow-up appointment with the seizure specialist.

Good news: I haven't had any seizures since May 30.

Not-so-good news: The world is incredibly sinful and broken.

Good news: God is incredibly good and sovereign.

Not-so-good news: The devil doesn't play fair. He came to steal, kill, and destroy. I feel it in my body. I see it in the destruction and devastation my friends are facing in the wake of Helene, and I see it in the lives of loved ones as they struggle to navigate a harsh world filled with broken minds, broken marriages, and broken bodies.

Good news: God is a way maker, miracle worker, promise keeper, light in the darkness. He can (and will) make all things right. I've seen him do it time and again in recent weeks.

Time, Please Don't Have Your Way

I stood at the kitchen sink the other day, holding a bowl in my left hand, a sponge in my right. I gripped the bowl in my left hand, my thumb on one side of the lip, my other fingers wrapped around the inside, turning it this way and that as I slathered it in soapy water. I marveled at this tiny, common miracle, and I wondered if I would ever get over the simple ability to hold a bowl with my left hand. Because at one time just a few short months ago I couldn't fathom the idea of ever doing something like that again. It seemed like an impossible goal. 

But there I was. 

Holding a bowl with my left hand. 

I was in awe. 

And then it was quickly followed by the thought, What will the moment look like when I no longer stand in wonder at such things? And I'm not trying to rain on my own parade here. I'm just all too aware of my humanity. I know how quick I am to move on with life. I know how ungrateful I can become, forgetting the struggle and the pain. Just months ago I was wishing this moment would come, when I had the strength to do the most basic of tasks. 

And here is that moment. It has come.

Now I can open a Ziplock baggie.

I can type. 

I can wash a bowl. 

And I've already forgotten how much pain it took to get to those things. I've already forgotten what it cost to be able to wash that bowl.

I pray to God I never go through another two months like the ones I did following the surgery in April. They hold so many painful memories.

But I fear nonetheless that time will have its way with me, dullness will settle in, and I will no longer marvel at the simple act of my left hand holding a slippery bowl. I fear I will take for granted the struggle I went through to do that. I fear the extraordinary will become once again ordinary. 

And maybe that's for the better? I'm not sure. Perhaps God knows we can't endure the intensity of the sun for an extended period of time anymore than we can endure the intensity of the storm for an extended period of time.

I am well aware of the contradiction with which I am praying - in that I both wanted time to have its way, and am now praying it wouldn't. 

I pray I would not grow dull to the pain and the cost of these last seven months.

And I pray I would not take for granted the beauty and wonder it is to have strength to stand at a sink and wash a bowl.

______________________________

Functional updates:

I started the first of 12, 28-day cycles of chemo earlier this month. Turns out it's a helluva a lot of work to stay alive and to stay healthy. 

Symptoms, for the most part, have been mild, nausea more than anything. But I tell you what, "chemo brain" is no joke. If my head weren't attached, I'd have left behind awhile ago. My job is highly detail-oriented, so I've had to do double-time to keep track of everything.

Motivation has been a major struggle these last few days. I've just felt like being a lazy bum and not getting out of bed.

I have my monthly check-up with my neuro-onc next Monday where we'll take stock of everything and assess next steps for the next 28-day cycle.

Prayer requests

• Energy and motivation to get through the day
• Minimal side effects
• Desire to exercise and keep my body moving
• Discipline to spend time reading the Bible

General Update

Note: If you haven't read the update at the bottom of the previous post, I encourage you to do so. It serves as a preface to this post and all other posts going forward.

Ah,  break. I'm sad you are coming to end. You were a much-needed timeout.

Break primarily consisted of working, writing, and itching. I worked, as this is heading into our busiest time of year, and I needed to make sure I was keeping up with everything and getting ahead where I could. The conference I help plan is in November, so between back-to-school and then, the pace just picks up with each passing week.

I wrote a new piece for Gospel-Centered Discipleship, also noted in my previous post. I spent a fair amount of time mentally piecing it together and dwelling on Deuteronomy 8 and Isaiah 43:18-19 before I formally started writing. I personally think it's one of the best pieces I've ever written, costly though it was.

I also spent part of break itching for a couple of weeks, enough so I left a smattering of bruises all over my body. As soon as I started tapering the steroid I was on, this crazy rash started, mainly on my head, face, and neck, then started working its way down my arms and torso. The neuro oncologist had no idea what was happening, so he sent me to a dermatologist (so much for not seeing any medical providers while on break). Thankfully, the dermatologist knew almost immediately what was happening as soon as I described symptoms: morbilliform drug reaction. His leading suspicion is that I had I drug-induced reaction to the antibiotic I was on during radiation. I have never itched so much in my life. I was losing sleep, I was itching so much. He prescribed another drug, a cream, which helped so much. I was almost completely itch-free within a week. Thus, the Great Itch of 2024. Let's hope that doesn't happen again.

But the biggest news of all is I had my first MRI while on break. I then met with the neuro oncologist and the radiation oncologist to review the results. The tumor has shrunk! The radiation oncologist said the results exceeded her expectations. I'm so grateful to God for his faithfulness. 

Up next: I restart chemo this coming Tuesday. I am entering the next phase of treatment, which will look very different from the first. From here, chemo will run on 28-day cycles. Of those 28 days, I will only take chemo on days 1-5. I then take nothing on days 6-28. I repeat this 28-day cycle 12 times. So, theoretically, I'm in treatment until next August, getting MRI scans every 3 months, doing blood work on a regular basis, and seeing my oncologist every month for the next 12 months.

Prayer requests:

• Side effects: Pray for minimal side effects. This round of chemo will start at the double the dose I was on initially, with the goal of getting to triple the dose down the line. We will assess each cycle, and the doctor will adjust the dose either up or down, depending on blood counts and side effects. I also need to be able to get my job done and I don't want side effects interfering with that to the point that I fall behind.

• Processing trauma: I can tell there is a lot of trauma-related memories and issues from the last 7 months that are starting to surface. The doctor cleared me to drive, and I immediately burst into tears at the prospect. It's been 7 months since I've been behind the wheel of a car, and I never had a seizure while driving, but the fear of having another seizure, let alone while driving, profoundly haunts me. While cleared, it may be a while before I voluntarily choose to drive.

• Discipline in physical rehab: I had what I think is my last occupational therapy session this past week. I need to continue to rehab my arm and shoulder, though, and my body overall, so that I can continue to regain strength and coordination on my left side. I think I'm getting to the place where I can start doing some basic workouts like I was used to doing at the gym, but I'm going to have to take things slow and start with bodyweight-only movements for now. I have an old herniated disc flaring up, so I'm trying to focus on keeping that from totally coming off the rails.

• Increased cognition: I can tell a decrease in my memory and recall. I have to be very quick to write things down as far as tasks I need to do, as I can't remember them even 10 seconds later. I mentioned this in one post awhile back - how do I tell the difference between brain cancer and just regular ol' aging? Welcome to brain cancer AND aging! This ought to be barrels of fun.

Thanks to the army of prayer warriors who have consistently gathered around me and interceded for me these last 7 months. I'm still standing because of you standing in the gap for me and because of a faithful, sovereign God. 💗💗💗

Remembering and Forgetting

Over the last few months I've had an assortment of conversations with a friend of mine, who has had health issues of her own, and we've been comparing notes (and not in a Suffering Olympics sort of comparison) about what we each remember or do not remember about our health experiences. "I remember this in pre-op, but not this..." "I can remember this appointment, but not this one..." 

And all that got me to thinking a lot about remembering and forgetting. I can tell a distinct difference in my short-term memory these days, like I escalated the aging process by about a decade or two. (Forty is the new sixty, anyone?) For example, I used to be able to quickly recall the names of actors, movie titles, and movie quotes, but that's more of a struggle these days. (Although, that's not really a useful life skill anyway, so does it really matter that I can't remember those things as well?) I also have to be very quick to write down anything on the to-do list before I forget it. Probably a lot of what I can't remember from recent months is from trauma, my brain's way of saying, "You didn't need to remember that anyway, so let me do you a favor."

As a result of those conversations with my friend and my own reflections, I wrote and published a new piece for Gospel-Centered Discipleship, which just released this morning. I normally post pieces to the blog before escalating to formal publication, but I just got the sense this one needed to move straight to publication, so I spent part of break writing it and then going over edits from the editor.

"What a Rare Brain Cancer is Teaching Me About the Art of Remembering and Forgetting"

I hope you find it of value. My prayer is still that God would help me to remember what needs to be remembered (maybe that means I still recall that Ethan Embry is TB Player in That Thing You Do! - and maybe not), and to forget what needs to be forgotten.

Feel free to post it to your socials or text it to a friend. Thanks for reading. 

______________________________

Functional updates:

I'll eventually post an entry dedicated solely to health updates (hi, Great Itch of 2024), but as a preface to that:

This break was much-needed in a way I didn't anticipate, offering a lot of margin and space to pause and hear myself think. The chief conclusion that rose to the top revolved around communication moving forward. This blog was essential in the early days and months of my diagnosis. My family and I needed to offload a lot of direct communication and this method met that need. I also wanted a forum to pour out all that was rolling around in my head. This has easily been the most prolific period of writing for me in well over a decade. 

Those were good and right things - at the time.

But the situation has evolved and my body isn't coming off the rails like it was in the first six months and the constant parade of thoughts has slowed (despite the lengthy note in my phone that says "future blog post ideas"). My family and I aren't white-knuckling our way through life as much as we were. Although, that's not to say we aren't as guarded, as we've seen first-hand how life can change in the blink of an eye. 

As time passed during break, when I thought about the prospect of posting again, it suddenly felt like such a chore to me, and I was suddenly feeling the weight of expectations from others, whether real or perceived. I told my mom, "I don't want to be both the breaking news and the reporter of the breaking news." Not anymore, at least. It never felt like a chore at the beginning, but like I said, time and space have finally given me enough room to hear myself think.

All that being said, you will notice a considerable difference in the frequency and substance of posting moving forward. 

Sometimes I might post just health updates. 

Sometimes I might post just reflective pieces. 

Sometimes I may post both. 

And sometimes I may go for stretches where I post neither (this is where it's your job to not panic just because I haven't said anything in awhile. Keep calm and carry on).

This isn't just about the next 12 months of treatment.

This is about the rest of my life.

I have to find a more sustainable pace and rhythm to all of this without making like a bear and hibernating from all humanity until further notice.

I've been so grateful for you who have been reading, keeping up with every post and every turn of events. You have been the encouragement to me in the chaos, and writing has been the light in the darkness. (Looking back, I literally don't know how I posted anything coherent those first two months after the surgery in April when I felt so wretched and everything felt like a big fat giant mess).

There's still a long road ahead and you'll no doubt hear from me eventually, but until next time, back to you, Bob, for the weather and traffic. 😉