No ER For This Kind of Pain

I can feel the start of the metaphorical hemorrhaging, the spilling over of trauma into other parts of my life. I'm not sure what kind of tourniquet exists for such things. I knew I’d start seeing the emotional bleeding at some point, I just didn’t know when, where, how, or the severity of the bleeding. Donald Miller said in his book A Million Miles in a Thousand Years, after the end of a significant relationship, "I knew then the shock was wearing off. A certain fear grew. They don’t have an emergency room for the kind of pain that is about to happen to me, I thought" (194). I've been to the ER for a seizure, which led to the discovery of a giant brain tumor, but there is no such ER for what I'm experiencing now.

As I approach the one-year anniversary, I feel the weight of this past year starting to catch up with me. As one friend noted from her own cancer experiences, it feels like trying to clean up an oil spill with a paper towel. Impossible. I feel the hyper vigilance taking root. So many things gets flagged as warning signals in my brain. Trauma doesn’t allow a person to differentiate in a healthy manner anymore, and I'm losing the ability to differentiate between what's safe and what isn't. So many things feel untrustworthy, a danger, to me right now. 

My own mind can’t be trusted. 

The world around me can't be trusted. 

And most of all, perhaps God cannot be trusted.

Tish Harrison Warren wrote in her stunning book Prayer in the Night

It was a gray Sunday morning when I was in college. A few months before, a three-year-old boy in our congregation had drowned. Our church was still staggered in grief as I sat listening to my pastor, Hunter, preach about trusting God. "You cannot trust God to keep bad things from happening to you," he said. I was dumbstruck . . . But Hunter's point was that God does not keep all bad things from happening to us. He cannot be trusted to do that because he never made that promise. Doing so is, apparently, not his job. Our Creator lets us remain vulnerable (22).

Doggone it.

I'd prefer it, God, if you did make it your job to never let bad things happen to me and to not leave me vulnerable.

I see the hemorrhaging playing out most tangibly right now in the physical house I dwell in, a house that's stood for over seven decades and has been in my family for four generations. I swear I hear dripping all over the place. Appliances, vents, walls, ceilings, pipes. I go around listening to all these things, and I feel like I'm slowly losing my sanity. I lost some good brain cells in the surgery, but now I feel like I’m losing my whole dang mind. Did the contractor not do his job when he replaced the siding and the roof in the last couple of years? What if there's a leak and I find it ruins my walls? What if there's something wrong in my appliances, they catch fire, and the whole place burns down?

I dwelled in a body for four decades to discover that it had been harboring a malignant brain tumor for as long as maybe two of those decades. Potentially HALF MY LIFE. No symptoms. No warning signs. Then the bottom dropped out and my world erupted. A fully-loaded freight train I never heard, never saw, and never felt coming.

What if there’s something lurking beneath the surface of my house, in its walls, in its roof, subtle symptoms I ignore, and some day I’m going to watch the whole thing come tumbling down all because I just didn’t know what I didn’t know. What if my house has its own figurative tumors? What if things go undiagnosed in my house and the whole thing falls down around me? There are no ERs for houses. There are only fire trucks and fire hydrants, to douse the flames of what's left, just like chemo and radiation are dousing the flames of what's left of my tumor.

I'm having to wrestle all over again what I believe to be true about the sovereignty of God, just like I did before my surgery last April. God already hasn't stopped bad things from happening to me, but what if there's even more around the corner, waiting, lurking? The disparity grows between my reality and my faith. 

I don’t trust God to not let bad things happen to me. 

God, help me to narrow that gap once again. Do what only you can do.

_______________

Health Updates

I ended the pills for cycle number five this week, and it wasn't the abyss that the last cycle was, thank God. I don't know who all was pounding on heaven's door and what you said once you got there, but this round was significantly less severe than the last one. I still fought off some nausea, but no vomiting, no laying on the bathroom floor - none of that misery. I was able to eat like normal and water tasted perfectly fine. I'll see the neuro-onc again the week of January 26 to review this cycle and look ahead to when I'll start number six, which will be the halfway point!

One of my goals has been to get back to the gym. I've been talking with the owner of the gym to see about setting up times to meet with her one-on-one and slooooowly get started on some basics, build back up over time. I have no idea what my limits are any more when it comes to how long I can work out, how many reps I can do, etc. I am starting from ground zero. I keep joking with her that the scene from Apollo 13 is our inspiration. We are going to have to put this thing back together using nothing but that, meaning we are going to have to work at putting my body back together, but there are some things my body just isn't going to be able to do right now and will be eliminated as options until we know better.

The week of February 2 will mark the one-year anniversary since the first seizure, the biopsy, and confirmation of the diagnosis. I'm sure it will be a weighty week, and I have another post coming that will go with that week. Some people have asked how I'm feeling about that anniversary. I'm sure there's going to be a lot of emotions and sensitivity around it, but I feel like the anniversary of the craniotomy in April will be far more emotional because that to me is when the real chaos and the descent into the abyss started. 

I would appreciate your prayers for mental wisdom and stability as I sort through trauma. I'm making connections to a trauma counselor, but nothing firm yet. And prayers for wisdom in what I tangibly need to address in my house and what is just my brain being weird.

Comedy as Redeemed Mourning

Harrison Scott Key said in his wildly hilarious book How to Stay Married: The Most Insane Love Story Ever Told, "So much comedy is a kind of redeemed mourning, turning the dross of pain into gold, just as visiting Disney World HIS BEAUTY and HER BEAST tank tops is a kind of psychosis" (138).

I have felt that sense of comedy as redeemed mourning a lot in the last year. (Can you believe it will be one year already in February since the diagnosis?!) There was a lot of mourning, but there was also a lot of hilarity and ridiculousness, which in some ways felt irreverent at times. I felt as if I had to button it up because I had cancer, and who laughs when you have cancer? Everything just needs to be sad because that is the caricature I had in my head of what a cancer patient should look like. Bald and sad. And a permanent resident living on the bathroom floor.

So I began thinking over the more comical moments I've had here lately. Sort of my own personal version of "You know you have cancer when. . ." sort of list, but really these are the moments when I know I have brain cancer (and when I know I have friends and family who have sorted out when they, too, can safely inject some humor into the situation.) This clearly is not a portrayal of anyone else who has or has had cancer, so don't generalize what I'm saying here.

You Know You Have Brain Cancer When:

• You lose your hair to surgery and then again to radiation (but only half of it!) and then while throwing up from the chemo, think, “Well, at least no one has to be here to hold my hair back.” 
• You update your Memoji to more closely resemble the version of you that wears a beanie hat 24/7 and now needs glasses. 
• You joke with your brother that at least you managed to hit the trash can every time you threw up instead on the floor or on yourself, and he responds in a way that only a brother can with “#winning.” 
• You keep a running list of your medical claims just to see how much your insurance company has been billed, just for kicks. And you do this because you called your insurance company to see if they can provide a master report. No, no, they cannot. Not unless you need it for legal purposes, or some other reason you cannot recall. (And for the record, it's A LOT of money that has been billed to my insurance company. I'm not quite to seven figures, but we're getting there.) 
• Your friend buys you a water bottle decal of a cartoonish looking dumpster on fire with text beneath it that says, “This little light of mine, I’m gonna let it shine.” Which is a very polite way to say “Your life is a dumpster fire, but you’re doing a great job.” 
• You start a playlist in your iTunes that is simply called “The Year of Cancer.” 
• When you’ve been asked for what feels like the 9,000th time what your birthday is for verification purposes, you have fleeting thoughts of giving some alternate date, just to see how they respond.
• You’re like a toddler whose day revolves around nap time. Although, I suppose the statement could move in the geriatric direction just as easily, but let’s move in the toddler direction. 
• Your prayers consist of things like “Dear God, please don’t let me lose my lunch again today,” and your gratitude journal includes things like “Thanks, I didn’t lose my lunch today.” 
• It takes you four months to finally make it to a dinner date with friends after months of scheduling and rescheduling thanks to a body that has long since left you out of the decision-making process.  
• You have a new section in your personal library you mentally call “The Cancer Section.”
• You realize some people dream of sleeping or napping all day, but you dream of staying awake all day.
• You joke with a friend who is a paraplegic who has a shirt that says, “I’m in it for the parking.” So then when you roll up to radiation and slide into the “oncology patient” parking space, you text him a photo and say, “I’m just in it for the parking.” 
• You watch all these pharmaceutical commercials you used to laugh at, wondering why anyone would take them as the guy speed talks his way through all the possible side effects, “including death,” and now you watch them and think, “No judgment here. You go right on and take that med that includes possible nausea, vomiting, skin rashes, hair loss, deafness, blindness, heart attack, paralysis, asthma, kidney disease, heart disease, loss of all limbs, osteoporosis, hemorrhoids, curvature of the spine, stroke, and in rare cases, death.” I see you.
• You know what day it is based on your pill organizer. (But that’s only if you remembered to take your pills when you should. And if you don't do that, well, then you're just up the creek as to what day it is. Except for your phone, which also houses reminders to take your meds, and yet you still forget to take meds.)
• Your friend sends you a candle with a picture of a dog with a cone on his head with text beside it that says, "At least you don't have to wear a cone."
• You keep a daily log of symptoms in a notebook, and since you've given legally strict instructions to two of your friends to burn your real journals with all the true insights of your life when you die, those health logs will be the last documented remains of your life. So, congrats, at least the world will know if you had a bowel movement or not should you meet an abrupt demise while going through cancer treatment. 
• You seriously question the dividing line between aging and brain cancer. It doesn't really matter why you just walked into a room and can't remember what you're doing there. Just make another lap and the answer might come to you. You could use the steps anyway.
• You now understand the value of dry erase boards and dry erase markers more than you ever have before in your life. You have to write down what you need to do ten minutes from now sometimes. You even ask for some sort of shower-version of a dry-erase board for Christmas. Doesn't everyone do their best thinking in the shower? And you can't wait until you get out to write things down. No, that's far too long. You forget what you were thinking about in the amount of time it takes to squeeze shampoo in your palm.
• You think "Well, clearly when the neurosurgeon removed part of my tumor, he also apparently removed the cells that gave me the ability to back into a parking space without looking like some drunk, newly-licensed teen driver just pulled in."

Comedy. It really is a redeemed kind of mourning. So laugh away.

______________________

Health update

My most recent appointment with my neuro-oncologist was last week and we did our usual monthly lab work. My platelets took a major nose dive. The low end of normal is 150 and my platelets were down to 86, which was the lowest they've ever been in this process. We had to put further chemo temporarily on hold to see if the platelets would rebound before we could green light cycle number five. I redid lab work today and the platelets rebounded - just in a week! - to 175, which the highest they've been since July. I'll start the next round of chemo tomorrow night (But I don't take it until the evening, so I'll still be with it during the Buckeye game!) I told one friend, "Welcome to a life where perhaps whiplash is, in fact, the most common side effect."

In conversations with the doctor, we elected to maintain the higher dose of chemo, which is the same dose as last time when I was ultra-miserable for a period of a few days. I'm not a masochist, but I want to see if the same symptoms still play out or if the body adjusts in any way to the higher dose. This higher dose is ultimately the target dose and the highest I would go anyway. If it super sucks again, then we can just drop the dose back down without hampering long-term outcomes. If it does hold true, then by about Wednesday next week, I'll probably be getting reacquainted with the carpet in my bathroom closet again and water will sound absolutely awful to me. Yay for padded carpet!

__________________

Comments

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!

2024: The Year of Strange Joy

"Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed." 1 Peter 4:12-13

2024. You were a hit from my blindside that literally left me with a blow to the head. I feel like I've lived a lifetime in a single year. It’s been a year of shock, upheaval, and chaos at times. It’s been a year of figuring out how to live in a body that has often not felt like my own and a brain that has aged seemingly overnight. It’s been a year of moments filled with trying to fathom life beyond the next hour, let alone December 30. It’s been a year filled with moments of crying my eyes out because that’s all I felt like I had the capacity to do. It’s been a year of moments spent walking laps around my parents’ yard, practically wearing out what looks like a game trail, aiming to strengthen muscles that had forgotten how to function. It’s been a year of staring at one MRI after another, some showing large white masses and some now showing large gaping black holes. 

But it’s also been a year of financial abundance when it should have been a year of financial scarcity (turns out living with your parents can do wonders for your budget).  It's been a year of supernatural peace on the inside despite the swirling maelstrom on the outside. It's been a year of hearing God's voice more clearly despite the deafening noise of beeping monitors and the chatter of so many medical providers. 

It's been a year of strong weakness.

It's been a year of fractured hope.

It's been a year of strange joy.

Author Hannah Anderson wrote in her book Heaven and Nature Sing: 25 Advent Reflections to Bring Joy to the World, referencing the 1 Peter verses above and the stories of Mary and Simeon found in Luke 2:

This is a strange kind of joy - one that cannot be explained by sentimentality or celebration. It's the joy of an old man like Simeon, exhausted and broken by the suffering of the world, holding hope in his arms. It is the joy of a mother like Mary knowing that her child will change everything, but that she will lose him in the process. It is the joy of us who have followed this Promised Son in the way of suffering and found him faithful. It is . . . the joy of sharp pain and glorious beauty persevering together (pg. 111).

I have followed this Promised Son this year as best I know how.

And I have found that Promised Son faithful. Unimaginably so.

This cannot be explained by sentimentality or celebration. 

This can only be explained by a God who is wildly gracious, loving, and kind. But he's also a sovereign God who, in wisdom, allows trials to come our way. Trials that soften the edges of our souls. Trials that show us he is God over all we know. Trials that humble us and remind us we cannot live by bread alone, but on every word that comes from his mouth. Trials that teach us there's a story greater than ourselves being told, stories that are largely about him and not about us. Trials that refine us, leaving us more tender, more compassionate toward the world around us (most of the time anyway. There's still some goofballs out there for whom I have little compassion).

This is the joy of sharp pain and glorious beauty persevering together. 

This is the year I've witnessed strange joy up close and personal.

It turns out strange joy looks a lot like the face of Jesus.

"I've Witnessed It" by Passion, featuring Melodie Malone

When I was lost and all alone
Your presence was where I found home
You were there and You’re here right now

In every high and every low
You never left me without hope
You were good and You’re good right now

[Chorus]
I’ve witnessed Your faithfulness
I’ve seen You breathe life within
So I’ll pour out my praise again
You’re worthy, God you’re worthy of all of it
Your promises never fail
I’ve got stories I’ll live to tell
So I’ll pour out my praise again
You’re worthy, God you’re worthy of all of it

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.