My Dear Betsy

I love the occasional hidden surprise found tucked in the pages of a library book, and I don't mean the literary kind where you think, "Well, I did not see that coming." I mean the tangible, hold-it-in-your-hands kind. I have found money ($20 once!), bookmarks, personal notes, and other things of the like.

But perhaps the one I found sometime last year was the most timely and the most meaningful of the bunch. I don't remember book in which I found it, or even when precisely. I just know it tumbled out as I paged through the book. (I unashamedly admit that I will often read the last pages of fiction books to see how the ending goes before I start.) The cover was a glowing yellow sunset with a walking bridge over a small creek. The words, "Hope in Him," were scrawled across the top in cursive. 

The words and the image had already roped me in, but the true treasure was what I found on the inside, a needed a reminder in the turmoil, as if the card had been written for me personally and not the stranger it was originally sent to and had accidentally left it behind. The top half of the card included a Bible verse from Hebrews 10:35 written in a femininely-penned cursive in blue ink: "Don't throw away your confidence, which has a great reward. For you have need of endurance, so that you may do the will of God, and receive what is promised."

Beneath that, on the bottom half, was one part personal note, one part printed text of the greeting card. 

"My dear Betsy" was written in the same cursive blue ink of the Bible verse, then switched over to the formal printed portion, which said, "When things go wrong and all seems lost, hold fast to the promises in God's word. God is faithful."

But what I really loved were the personal additions to the formal print, where the sender underlined all seems lost and added to God is faithful to you, always. ♡ Bonnie

I have no idea who Betsy and Bonnie were or are, but Bonnie's words to Betsy were really Bonnie's words to Courtney. 

So, to my dear Betsy's out there who are reading this and are feeling like everything has gone wrong, may you find this unexpected surprise tucked between the emails in your inbox, and may you remember that when all seems lost, God is faithful to you, always. ♡ Courtney

General Update: What Does One Do With Curls?

My body went and made a liar out of me. In my last update on April 13, I said, "I started round number eight of chemo this past week, and yesterday was the last dose. I had far less nausea this time, having implemented some changes in how to handle it. I haven't been as miserable as the last two cycles have been, but I'm still not out of the clear just yet. I usually give it another 5-7 days after the last dose before I really come up for air." 

I made it sound like it wasn't that bad, but the key word there was yet. 

Judas Priest and a popsicle stick. 

That little window of "5-7 days after" was by far the worst days I've had during chemo yet. I felt absolutely awful. I had vision problems, was sick to my stomach multiple times, had terrible, terrible nausea, and slept a lot. I think I just left the curtains pulled most of the time, living like Isaiah 9:2 conveys, a person 'walking in the land of darkness.' Only I had not yet seen a 'great light,' so to speak. I rotated between the recliner, the couch, and the bed. 

I met with the neuro onc earlier this week and after I explained how bad this round was, he said I had two options: One, I could take a week break before this next cycle, or two, I could forge ahead with the next round but at a slightly lower dose. I opted for option two. I had already mapped out my month around chemo starting at a certain time, and I didn't want to derail that. So, I'll start round number nine (only three more after this!) next week, and I am praying that it is not as bad as this last one. 

Despite my chemo misery, perhaps my 'great light' in all this is my new anti-seizure medication. What a game-changer. All that lobbying and pressing to get it have paid off in spades. I made some rough calculations and based on the hours I've gained back from my morning snoozes and the evening hours of not going to bed so early, I now have an additional twenty hours in my week. TWENTY HOURS. 2-0. Twenty. It is wild to me what a significant difference it has made in my life to not get so drowsy every time I took my medication in the mornings and evenings. I'm feeling like Princess Jasmine in Aladdin, a whole new world has arrived on my doorstep minus the magic carpet and a handsome fella, unfortunately.

Thanks, radiation and chemo.

I know one thing I'm having to use those twenty hours for is trying to figure out what to do with curly/wavy hair that has volume and body. I went forty years of my life with hair that was stick straight and had zero volume or body. I think my mother spent most of my childhood lamenting the fact that my long, blonde hair just simply would.not.hold.curl, no matter how much hair spray she used or how long we left those pink sponge curlers in overnight. Acts of futility and insanity. Just ain't happening. 

And now, I get out of the shower, look in the mirror, and think to myself every day, "What is this mess? And what does one do with it?" I still haven't fully decided what long-term look I am aiming for, but these curls may dictate a lot. 

Generally speaking, the good days are really good, and the bad days are really bad. On the good days, I have lots of energy, I'm productive, I eat well, I'm connecting with friends and family, and generally going about life like normal. 

But those bad days are really bad. I go into hibernation mode and don't want to surface for a long time. I struggle to eat, it's tough to drink water because even that makes me want to gag, and would prefer to fall off the face of the earth for that stretch of time. 

I'm praying this lower dose will help the cause. Thanks to everyone who continues to keep in touch and doesn't take offense when it takes me a chunk of time to respond to texts or calls. It's definitely challenging trying to figure out how to pace my time in the good days between cycles. My month basically gets shrunk from 30 days to 20 days and I think the last couple of cycles, I've overcommitted on those good days in between. Regardless, I'm so grateful for everyone's continued support and prayers, good days and bad.

The Thief of Pain

I actually wrote a very similar version of this piece exactly eleven years ago this week. At that time, I had a herniated disc that was absolutely horrendous in terms of pain. Up to that point, I had never experienced that kind of pain in my life. 

As we look to Good Friday and Resurrection Sunday this weekend, it seemed appropriate to dust it off and freshen it up a bit, not only for myself, but hopefully as a reminder for others.

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It's amazing how fast the walls close in when you're in pain, whether mentally, emotionally, or physically. Whatever form it may be, it can be all-consuming when you've been gutted by grief and loss.

This time one year ago ushered in some of the very darkest, most miserable days of my life.  

Grief, loss, and pain were consuming thoughts.  

I would wake up and think about them.   

I would sit at the kitchen table and think about them. 

I would brush my teeth and think about them.

I would go to bed at night and think about them.  

I would walk and think about them.  

I would breathe and think about them.  

Every waking moment was spent thinking about myself, this hurt, and how to escape it.  I lost track of the number of mental and emotional breakdowns I had, which usually resulted in me in a fetal position on my temporary bed at my parents' house, sobbing, barely able to breathe.

I just wanted it all to go away, telling myself it must be some sort of bad dream.

Ultimately, all I did was think about myself for days on end.

I forgot that a world around me existed or that anyone else around me might be in worse shape.  I did nothing but live in my own little bubble, inside my own little head, unable to see past the end of my own nose and the yawning vortex stretched out before me that had become my life practically overnight.

Looking back on those days and months, I now keep thinking about Jesus, hanging on the cross, in sheer agony and suffering, in the kind of pain that makes mine look like a bucketful of sunshine and rainbows.  And the one fact I simply cannot escape is this:

Even in the face of his impending mortal death, even in his deepest moment of torture and agony, Jesus still noticed the thief next to him.  

Consider this: Think about the worst pain you ever have been in - mentally, emotionally, or physically.  Now multiply that times a hundred. My guess is you didn't care about the rest of the world at that moment. 

But then there's Jesus. 

Pure selflessness even while in agony.  Spikes driven into his hands, spear drawn through his side, a crown of thorns mashed onto his head, blood freely pouring out from seven places.  His back looks like hamburger meat.  His lungs are failing because he can't lift himself up enough to get a breath.  And somehow - somehow - he still manages to notice the man crucified next to him, as noted in Luke 23:39-43:

One of the criminals who hung there hurled insults at [Jesus]: "Aren't you the Christ? Save yourself and us!" But the other criminal rebuked him.  "Don't you fear God," he said, "since you are under the same sentence?  We are punished justly, for we are getting what our deeds deserve.  But this man has done nothing wrong."    

Then he said, "Jesus, remember me when you come into your kingdom."  

Jesus answered him, "I tell you the truth, today you will be with me in paradise." 

Here's what I find so startling in that moment: 

Jesus noticed the thief.

In that moment, when in his humanity he could have easily ignored either man hanging beside him, when he could have easily said, "Just get me off this cross and make it all go away," he turns to the thief and says, "I notice you.  This is the very reason why I came - was to notice you.  You are not forgotten.  And today you will be with me in paradise."

How many moments have I missed along the way in the midst of all this pain?  How often have I let it eclipse all thought of others around me and their own sorrowing and suffering, or even their joy and gladness?  Here in this season of Lent and Passover, here in this season of giving up in order to gain, here in this season of turning our eyes to the cross - how often did I miss the person next to me?

Jesus knew even on the cross, even in his worst pain, that the pain he was enduring was never about him.

It was about the thief next to him.

And the miracle of miracles is that Jesus still notices the thief and the criminal in me today, the girl who wants to rob the world in order to escape her own pain, the girl who is far too often so very self-absorbed.  

And he still turns to me and says, "Today, today, I notice you. I notice you in your grief, loss, and pain."

I want to be like Jesus.  

I want to turn and notice the world around me, no matter my own pain, no matter my own heartache.  

I don't want to get so myopic that all I do is focus on what's right in front me - and forget that this pain is temporary.  I don't want to forget that someday I'll get to trade it all in, and stand in the light of God's glory, right next to the thief Jesus noticed on the cross next to him over 2,000 years ago.

"Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen.  For what is seen is temporary, but what is unseen is eternal."  2 Corinthians 4:16-18

Praise God Sunday's coming.

Haunted by a Question

I’m not much of a dreamer. Five- and ten-year plans don’t exist in my head. They maybe did when I was in college, and I was highly ambitious about my equestrian career. When that whole trajectory changed (for the better, I might add), dreaming about any sort of long-term plan just didn’t make sense in my mind anymore. At that point, just on the leading edge of my 20s, I had already experienced what happens when we make plans: God makes better ones. So, I didn’t really bother myself with dreams or dreaming after that. I wanted to live open-handed and trust that whatever came next was for the best.

Some years ago, I came across one of those conversation-starter question, designed to help launch or deepen social interactions, whether in a group of people or one-on-one: “What do you want to be celebrating one year from now?” 

When I first read that question, someone might as well have hit a kill switch to my brain because I couldn’t think of a single event or goal in response to the question. I have zero imagination for such things, whether big or small. Maybe someone would have said, “One year from now, I want to be celebrating a promotion,” or “I want to be celebrating the birth of a baby,” or “I want to be celebrating my engagement,” etc. Some of you could answer that question without batting an eye, as you have a goal, a clear vision of some kind of what you want life to look like. Or at the very least a hazy vision, an underlying ambition, even if it’s not set against the backdrop of a calendar.

Me? [insert awkwardly long blank stare.]

I’ve never been one who envisioned being married by a certain age, having kids by a certain age, climbing some sort of career progression in a particular fashion, etc. Anything about long-term goals instantly created a loss of signal, like a snowy TV screen. In a culture where extroverts are prized and side hustles are the name of the game, anything less than a seemingly performative, self-promoting nature gets you left in the dust. I was left in the dust long ago - dreamless, aimless, social media-less, and seemingly ambitious-less.

The fact that I couldn’t ever be imaginative enough or enough of a dreamer to answer that question nagged me for years, almost haunted by it in my sleeping and definitely in my waking hours, creating this deeply-rooted insecurity that I was coasting through life because I couldn't ever answer that question. “What is wrong with me, and why do I struggle to answer such a seemingly innocuous question? I felt this deep need to conjure a response to this question, something clear and crisp, firm and tangible. It’s not a particularly complicated question, after all. What do you want to be true of your life one year from now? Sounds easy enough, right?

Crickets every time for me.

And then I found myself lying in a hospital bed on April 20, 2024, and answers to that question began pouring out. In my hazy memory of the moment, my family had left for the day, so no one else was around. The hospital room was quiet and dark, the only light pouring in was from the hallway and maybe the TV. By that point I had been moved out of the neuro critical care unit, and I was attached to far fewer wires and tubes. I was still struggling to text so I honestly don’t remember how I physically went about documenting the list. 

An early prototype

But on that Saturday, April 20, 2024, I finally answered the question that had haunted me for years. My answers had nothing to do with getting married, having kids, getting a promotion, paying off debt, starting my own business, losing weight, or whatever else ends up on lists of dreams, all of which are good dreams. 

The things I wanted to celebrate in a year didn’t even include “be cancer-free.” No, I had a very low bar for my dreams, my hoped-for celebrations. Mine were common and ordinary, yet I might as well have added a final bullet point that said, “Build your own rocket ship to the moon,” as all of the things I wanted to celebrate in a year felt like they were on the same playing field as getting to the moon, so far out of reach. I laid in that wildly uncomfortable hospital bed with thirty-one staples down my head, not daring to conjure up five- and ten-year plans because that felt absolutely terrifying when I couldn’t even fathom life past the next hour, the next day, or the next week. Even one year from then felt incredibly risky. I opened a new note in my phone and I haven't touched it since so that the timestamp would be preserved as proof.

What did I want to celebrate one year from April 20, 2024?

I want to celebrate

• Not being in a hospital
• Being able to type and have full use of my left arm
• Being back at the gym
• Being back in my own house
• Driving again
• Getting a tattoo
• Having a full head of hair
• 
  

Even now, I weep writing and re-reading that list, as the memories of those days hold so much pain, so much grief, and so much loss. I hadn't been able to answer that haunting question for years, and then when I do? 

I was wishing for the simplest of things, like having hair and being able to type.

So, here we are, one year later, and I am celebrating almost everything on that list:

I was discharged from the hospital on April 22, 2024, and have not been back (as an admitted patient) since.

I am able to type and have full use of my left arm. There isn't a thing in the course of daily living that I find I can't do because of my arm or my fingers not working properly.

I started back to the gym in February of this year.

I moved out of my parents' and back to my own house last November.

I was cleared by my doctors to drive back roads last September and on the highway in November.

(The tattoo situation hasn't happened yet, but it's definitely on the post-chemo list of dreams. I've got a temporary stand-in for now thanks to my niece's inspiration of Bic's BodyMark temporary tattoo markers. How it looks in the photo above is basically what I want the permanent one to look like, using the words "Let it be Jesus," the song I laid claim to when everything started crashing down.) 

After I lost one side of my hair to radiation and we shaved it last July, my hair was finally long enough here this February to get it cut for the first time in over a year. I do, indeed, have a full head of hair now.

And just like that, an unfathomable, out of reach, list of dreams has become reality since I wrote that note. 

And it wasn't because I 'manifested' anything, 'set my intentions,' or put these things 'out into the universe.' That list wasn't about thinking positive thoughts and willing them into existence. 

No, the answers became reality because of a gracious, kind, and sovereign God who made them so. This wasn't about me manifesting anything. I have said from the day of my diagnosis that this was going to be a Jesus story, not a cancer story. And the achievement of those desires, were certainly not because of my righteousness, but rather his great mercy (Daniel 9:18).

It was - and still is - a Jesus story. A story of a God who has done far more than I could ever ask, answer for myself, or imagine.

The last bullet point, a blank one, was unintentional, but for whatever reason, I left it at the time. 

Maybe it was for all that was yet to come, the moments I hadn't yet experienced, but would want to be celebrating all the same:

• Being seizure-free.
• Remaining employed and working throughout this past year.
• Making it through rehab appointments without crying.
• Washing my own dishes with my left hand.
• Having enough gumption to advocate for myself to get the medical care I needed.
• Reading a book with no vision problems, being able to see all letters and all words.
• Writing 52 'devotions' per my dad's challenge.

I haven't really given much thought to what I want to celebrate one year from now. At least the thought of hours, days, and weeks feel less risky, but the years still do at times. So, for now, we'll keep the list of dreams simple:

•  
•  
•  
• 
  

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen" (Ephesians 3:20).

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Health Update

The self-advocacy victory pose.

I finally have in my possession the new anti-seizure medication! It was an instant change from the time I took my first dose - the drowsiness vanished! Now, I'm not suddenly unleashing myself on the world and going hog-wild with not being sucked in by a mid-morning medication-induced nap. However, this does now allow me to work consistently and once the day gets rolling, it stays rolling. I am filled with gratitude in light of this change, and it affirmed my persistence in lobbying as hard as I did in sorting through the mess of the healthcare system.

Then in the midst of all that, I got a toe infection. A toe infection, of all things. It's been a chronic problem child over the years, having had the nail removed twice already. The oncologist had me move quickly to get my hands on an antibiotic so that a small problem didn't become a big problem. Chemo would have been delayed if the infection hadn't gotten under control, but the antibiotic cleared it out and the podiatrist cleared me to forge ahead as scheduled. 

I also had a neuropsychological evaluation. The results? I still have a brain and one that happens to work fairly well. I'm glad the experts could confirm. I had requested the evaluation awhile back (their wait list is incredibly long), just so I could have baseline data I could refer to in the future, if need be. Ideally, it would have been done before the craniotomy last April, but I didn't even know such a thing existed then and likely wouldn't have been able to get in anyway. It's a lengthy test, taking about three hours to complete. My brain was a little fried after needing to burn so much cognitive energy, but I made it. It was primarily a fact-finding mission, meant to establish a baseline of data. So, I won't be doing it again anytime in the near future.

I started round number eight of chemo this past week, and yesterday was the last dose. I had far less nausea this time, having implemented some changes in how to handle it. I haven't been as miserable as the last two cycles have been, but I'm still not out of the clear just yet. I usually give it another 5-7 days after the last dose before I really come up for air.

This week marks one year since my craniotomy (April 16), or as somebody said in a support group that I attended one time, "crani-versary." This to me is the true anniversary of when everything started, not the February anniversary of the diagnosis. This is when the deepest parts of grief and chaos were ushered in. I honestly don't know how I made it out of bed every day, surrounded mentally and emotionally by so much darkness. But God in his faithfulness and grace hoisted me out of bed, moment by moment. I am forever changed by his kindness.

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Bonus!

Unrelated but related, I have been listening to Rita Springer's newest album Fed by Ravens, and there is not a song on that album that I don't feel deep, deep in my soul. If you're looking for some new tunes, or if you feel like you're in your own wilderness season, give this song a listen, and then listen to the entire album. I've never heard another album like this in my life that is so visceral and raw, an honest depiction of the wilderness seasons of life for a Christ-follower.

General Update: Welcome to Medical Scranton

This one's for you, Kristina, and any other human being out there who understands the absurdity and frustrations of the healthcare system.

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I was texting with my friend Kristina last night, who has had three rounds of cancer herself, sharing with her some of the recent events regarding getting this anti-seizure med, as she knows all too well the realities of a complicated healthcare system. She's been living it for a number of years. I often think to myself in the form of movie parallels, and when I was pondering the whole matter yesterday evening, one scene popped into my head from Home Alone, when Kevin's mom is at the airport, pleading with the gate agent to find her a flight to Chicago so she can get home to Kevin after the family mistakenly leaves him home alone over Christmas vacation. As Kristina and I were texting back and forth on the situation, I sent her this clip on YouTube and commented: "I don't have an 8-year old son I'm trying to get home to but I sure as hell am in some sort of Medical Scranton trying to get to my meds." 

She laughed and said, "Medical Scranton should be the title of your next blog."

I joked with her I was going to rewrite that scene to capture the latest situation I went through with this anti-seizure medication approval. I figured I'd do it at some point, but not necessarily for two hours starting at 1:36 am last night. I can always tell I'm on to something when my brain is buzzing with words at all hours of the night and I'm losing sleep, crafting and rearranging sentences and paragraphs, frantically typing things into my phone as fast as my fingers can move, but still not fast enough to keep up with my spewing brain. That's when I know it's the good stuff. 

Or at least hope it's the good stuff.

So, here we are. The medical version of Scranton as found in Home Alone aka Medical Scranton. 

If this post had opening credits, it would say “inspired by a true story,” not “based on a true story,” (there are distinct differences!) as it goes without saying, the whole thing below is made up, and I used only the skeleton of the real-life situation to recreate the movie scene. I do not write all this to throw my doc’s office under the bus (I am big fan of this doctor himself, but obviously less-than-impressed with his staff at the moment). Rather, I write it perhaps to illustrate the bigger picture of the absurdity of the healthcare system at times; it just so happens that my doc’s office is in my crosshairs. And maybe I also need it for my own catharsis, to find some levity in the midst of a situation that was far more stressful than it needed to be. 

I want to acknowledge that for all intents and purposes, I live a life of incredible wealth and privilege. What I had to jump through in a single week is what some patients spend years wading through (or particularly in marginalized populations, never have the same 'privilege' of wading through). They are already tired and worn out from the physical realities of their condition, only to have to fight their way through a very complicated health system, met with resistance everywhere they go. I’m not here to offer a discourse on what should or should not change within that system. 

This is my own story, one that is filled with a lot of safety nets, including my own personality that bends toward I'll be danged if you're going to tell me 'no.' A lot of patients don't have the kind of energy or drive to pursue things. At the first 'no' received from their doctor, perhaps many would have simply accepted that and moved on, believing that to be the end of the road.

This is merely a small glimpse into what it took to get my new anti-seizure drug approved. I truly do not know what came over me to push back so hard against the doctor’s office. In some ways, it was out of character for me to be so assertive, especially in a medical setting. I’ve often lamented times in the past when I felt like my concerns or wishes were dismissed and I never spoke up for myself. Well, clearly that was not the case here. I felt like I was turning into a trial lawyer, writing mental opening statements, and mapping out how I was going to present my case and what questions I would ask in the cross-examination. You want to tell me this is an impossibility to get this thing approved? Watch me get it approved. 

I even surprised myself on the whole matter.

If you haven't seen Home Alone, or if you have, but don't remember the clip, I would suggest watching here as a primer/refresher:

Now, here's my rendition of how that scene went down this past week in the form of trying to get this medication approved:

Doc's office: It’s impossible to get this medication approved.

Me [said with suspicion]: It's impossible?

DO: I’m very sorry ma’am, but it is Lent.

Me [exasperated, beating my head against the wall]: What about another phone number I can call? 

DO [clicking through things on their computers]: Nothing. We are all out of phone numbers you can call. May I help you get some Zoloft to calm your nerves? 

Me: No, I don’t want some Zoloft. I want my new anti-seizure medication. 

DO: I’m terribly sorry, ma'am, but we are doing some of what we can.

[DO motions for another patient to step up to the desk with their prescription.]

Me [to the next patient]: Go ahead, I'm sorry. Doctors to see, drugs to take. Oh, I see you’ve got a prescription there. That's good.

Me: [Shoves them out of the way, as I move back to the desk.] Look, I have been through two surgeries, rehab, radiation, and eight months of chemo. I’ve puked my guts up, I’ve lost my hair, I’ve taken a nap nearly every day since last June. I’ve called Express Scripts who told me to call me you who told me to call Express Scripts who told me to call you - wait, who I am calling and where the hell am I? 

DO: Medical Scranton. 

Me:  I am trying to get access to my new anti-seizure medication! And now that I'm this close, you're telling me 'it’s impossible' and 'a waste of time'? No, no, no, wait! This is Daylight Savings Time, the season of perpetually increasing sunlight! 

[DO attempts to interject but I keep rolling.]

Me: I don't care if I have to come to your waiting room every day with a bullhorn. If I have to sell my soul to the Holy Spirit himself itself, I am going to get approval for that new medication.

DO: Um, ma'am, if there was anything I could do to assist you in this futile endeavor today...

Me [desperate]: Do it. Do anything.

Me [I jump, startled by a fellow patient coming up behind me]: What?!

Fellow patient: Excuse me. 

[Speaks to the DO] Can you excuse us for a second? 

[To me] Can I see you for a second? 

[motioning back to the DO] Excuse us. 

[Back to me] I couldn't help but hearing you've got a little bit of a dilemma. Well, we've got a crisis ourselves. 

[Motioning to his fellow sojourners in Medical Scranton] Allow me to introduce myself, Joe Medski.

 

[Reaches out to shake my hand] Ya know, the alpaca shearing king of the Midwest? 

Me: I'm sorry, did you say you could help me?

Joe: Anyway, I'm rambling on here. We also are trying to get to our meds. You can only take so many alpaca hooves to the head before you need some help, right? Our medications got cancelled, too, so we gotta fax some things into the Vortex.

[Motions over to fellow patient standing to the side.] You see that guy in the jacket over there embroidered with an alpaca? He’s going to rent us a nice, big fax machine so we can get out of Medical Scranton. Now, I heard you had some problems? You're trying to get approval for a new medication, so you don't sleep or something? Ah geez, if you gotta get out of Medical Scranton, we’d love it if you wanted to fax in your paperwork with ours. 

Me [with hint of awe and profound gratitude in my voice]: You’d do that for me? 

Joe: Sure! Well, why not. What are alpaca shearers for if not to fax paperwork? We all gotta get our meds somehow. We gotta send some things to our pharmacy benefits manager on our way to our third-party administrator and then to our PPO with maybe a stop at HR or the FDA, but admittedly, we’re still a little confused on that last part. Regardless, we’d be glad to slide yours in there while we’re on our way to the next black hole.

Me [overwhelmed with gratitude]: Thank you. Oh, thank you.

Joe: If you don't mind going with some alpaca shearing bums.

Me: No, I'd love to.

[Cue rapturous music. End of scene.]

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All that to say, no alpaca shearers were involved in my scenario, BUUUUUTTTTT, the alternative anti-seizure med that the doctor's office told me was going to be 'impossible' to get approved and would be a 'waste of time' did, in fact, GET APPROVED. Praise God in the heavens above, but Judas Priest and a popsicle stick. What a freakin' joke that whole thing was. And all it took was for them to answer ONE QUESTION - which they did via fax. I've stood on so many mental soapboxes this week that I should be squeaky clean by now with all the soap I've used up.

Now, the next prayer request is that the alternative drug would actually have its intended consequence of eliminating my drowsiness. Maybe by the time next I post, we'll know. 

Until then, if there's anybody else out there in their own version of Medical Scranton, don't lose heart and don't be afraid to advocate for what you need. Your voice matters, even if it seems like it's falling on deaf ears. May the fax be with you.

Reaching for Balloons

We're all reaching for something aren't we, whether literally or figuratively? Perhaps some are reaching down to scoop up a newborn baby, while others are reaching for the memory of a baby that was never born. Perhaps some are reaching for a job computer on which to answer emails, while others are simply reaching for a job - of any kind. Perhaps some are reaching for the laundry of a messy husband, while others are simply reaching for the hope of a husband.

We spend our lives reaching for things around us, hoping we can finally grasp them within our hands or in our hearts and minds. We reach and long for the 'good ol' days', what once was. We reach for memories. We reach for people. We reach for better health, sharper minds, healthier relationships, more satisfying careers, more wealth, more fulfillment, more joy, more, more, more, better, better, better.

I was paging through personal journals back in early February when I came across an entry I wrote that actually somewhat startled me: 

“I feel like my biggest struggle lately really has been my brain. Concentration feels impossible. My mind feels scattered all the time, like I’m constantly reaching for the string of a balloon that has already drifted to the sky. Trying to study feels monumental because my mind is a constant pinball machine.” 

Don't you just love a good stock
photo?

I wrote that snippet nearly five years ago in July of 2020, as I was studying for a certification exam for my job. Even then, my mind felt fragmented and I was becoming keenly aware of it, enough so to comment on it multiple times. I wrote another entry in April that same year, "My short-term memory is another piece I’m concerned about. Sometimes swear I have ADD. My mind feels so scattered and fractured all the time. I’ll get sidetracked in the middle of a task and minutes or hours later, finally remember what it was that I was originally doing. It alarms me sometimes." 

Now, some of you would laugh and say that's just aging, but I would have been only thirty-five at the time. Given that multiple doctors have told me I've likely had this tumor for years, it's not out of the question that something was going on even then, subtle though it may have been. I remember even discussing with one of my healthcare providers at the time how much I was struggling to concentrate and line up my thoughts. I chalked it up to living in a tech-heavy world filled with constant distractions. And maybe that's truly all it was at the time and it had nothing to do with my brain tumor. I'll never know conclusively, and quite frankly, it doesn't matter because it's not going to change the present circumstances.

But ever since I've stumbled upon that July entry, I've been haunted by that visual, my arm reaching for the kite tail of a balloon, only to find it slipping out of my grasp. And I've been asking myself ever since then, What is it that I've been reaching for? And what am I hoping will happen once I've attained it and pulled it back down from its sky-ward trajectory?

I have yet to fully answer that question for myself, but I continue to hover over and around it, reaching for an answer to the very question about reaching itself. It's also made me pause and think a lot about the ways that God has been reaching for me, and not just in the past year, but for all my life.

Carolyn Weber lamented in her exquisite memoir Surprised by Oxford of how it took her so long to come to faith and belief in God. She was agnostic most of her life, but then went to the University of Oxford in England to pursue her graduate degree. It is there that she began questioning what she believed and why. She ultimately came to faith in God and converted to the Christian faith as found in the Bible. She shared a conversation she had with her friend Dorian as they walked home from one of the college balls (and when I say ball, I'm saying the fancy gown kind of ball):

Dorian spoke, "As I've discovered, Caro, if you look back on your life, you'll see His hand in it, and over you. You'll begin to see with new eyes all the times that were subtle as well as flagrant opportunities to know Him."   

"True, and yet why did not come to know Him until this year?" I asked. 

"Only God knows," Dorian chuckled. "But maybe that's not the question. Maybe the real question at stake is, why did he keep trying?"

In other words, why did God keep reaching for her, or for any of us, for that matter? Poet Francis Thompson does not call God "the Hound of Heaven" for nothing, does he? No, for God is a pursuing God, a relentless God who deeply desires for people to come to know him, and not just know him, but to know him personally, even though in part on this side of heaven, but then to fully know him once in heaven with him.

In the book of Acts, the apostle Paul proclaims to a crowd gathered in the Aeropagus, which was a gathering place in the ancient Greek city of Athens for all the thinkers and philosophers, answering in some ways the question Dorian posed to Carolyn:

The God who made the world and everything in it is the Lord of heaven and earth and does not live in temples built by human hands. And he is not served by human hands, as if he needed anything. Rather, he himself gives everyone life and breath and everything else. From one man he made all the nations, that they should inhabit the whole earth; and he marked out their appointed times in history and the boundaries of their lands. God did this so that they would seek him and perhaps reach out for him and find him, though he is not far from any one of us (Acts 17:24-27).

Why did God uniquely set each person in a unique century, in a unique year, on a unique continent, in a unique area, and in a unique city? He did that so that unique individual would have the optimal environment for seeking and reaching out to God. And not just to seek and reach for him, but to also find him. My existence as someone born specifically in the twentieth century, in a specific year, on a specific day, in a specific country, in a specific state, and in specific city, was so that I would have optimal opportunity to seek him, reach for him, and find him, even though he wasn't going to be far from me anyway. I am where I am, and you are where you are, so that we will reach for God and find him.

God desires to be found. And he's willing to go to great lengths to make that happen.

And in our reaching, we will find that he has been reaching back for us all along, just like Dorian told Carolyn. The real question at stake isn't why did it take us so long to reach for him, but rather why did he not relent in reaching for us?

When Jesus hung on the cross, his arms were stretched likely to his full wingspan, but I can assure you, in that moment, his reach was far greater than the mere width of that crossbeam, the mere width from his left fingertip to his right fingertip. Both in that moment and to this day, the cross was a display for all to see, that he and his Father were reaching for every lost and broken soul that has ever lived. The reach of the cross was not the length of a wooden crossbeam; it was the length of all eternity, across all locations, across all languages.

Maybe you've been reaching for him, maybe you haven't. The question at stake is, why is he continuously reaching for you? He’s reaching for you, whether you acknowledge it or are aware of it or not. 

That is no small love reaching for me, reaching for you.

I have not spoken in secret, from somewhere in a land of darkness;

I have not said to Jacob’s descendants, ‘Seek me in vain.’

I, the Lord, speak the truth; I declare what is right (Isaiah 45:19).

When we reach for him, for his beauty, his truth, his righteousness, his holiness, his glory, our seeking will not be in vain. 

May we all reach for Jesus even as we're reaching for whatever balloons we may be longing for. Perhaps we'll find him at the end of our balloon strings, waiting, reaching back. 

____________________________

Health Update

Whew. The past couple weeks have been a bit bumpy, both in side effects and in stress levels. I started cycle number seven, which means I would have been actively taking the chemotherapy March 11 through March 15. By the time March 13 rolled around, it was heading down hill. The nausea just gets atrocious, even with anti-nausea meds. Definitely threw up dinner one night. Couple other false alarms of wanting to get sick to my stomach and would just sit on the bathroom floor, waiting, and then nothing would ever happen. 

When it gets that bad, the hardest part is drinking and eating. Even water is disgusting to me at that time, which means I'm usually not getting enough fluids in me. Fruit juices seem to help the cause, although still not nearly the volume I would need to with water. It's also really hard to down my meds because I just want to gag all the time. I joked with my boss I was going to have to start playing the Chicago Bulls theme song, or some such hype music to get through my evening meds. (Feel free to post tips or other songs/hype music suggestions in the comments of how I can down meds when all I want to do is throw up.)  Of course, nothing ever sounds good to eat. I'm supposed to eat a 'well-balanced diet,' but when you're that miserable, eating kale or broccoli isn't exactly on the list of things that sounds appealing. 

Eventually I made it through to the other side and feel much better now. It's usually somewhere around Day 10 that I feel like a new person, and can function properly. Hopefully it's smooth sailing from here until the next round, which should be around April 7. However, this latest blood work showed that my white blood cells were the lowest they've ever been, so I was actually surprised when we moved forward without delay. It was mentioned that maybe we lower the dose in future cycles so that the blood counts don't take such a beating. I have my next follow-up with my neuro-onc on April 3.

As far as stress levels, that is related solely to issues with trying to get my possible new seizure med sorted out. Ya know, I thought I had some gumption before, but I am finding a whole new reservoir of it that I didn't know I had in me. I've really had to check myself because if there had been a broom within reach for several days this week and last, I'm pretty sure I would have turned into the Wicked Witch of the West. Thank God for the restraint of the Holy Spirit because if it's possible to get fired as a patient, I'm pretty sure I would have been if I had done and said what I really wanted to. I've just repeatedly hit the same roadblock over and over again - and surprisingly it's not with my insurance company! They've been great. It's with my seizure doc's staff. Good Lord Almighty, help me. The issue still hasn't been resolved, but I am praying to God it is soon, and that in the meantime, I would not fester and stew over the matter, like I am prone to.

Would appreciate your prayers on patience and that the process would unfold smoothly moving forward so that I can try the new medication to see if it helps the drowsiness I experience as a side effect.

General Update: Stars and Stripe Forever

Why it took nearly ten months for this question to dawn on me, I do not know. Maybe we can blame it on the brain tumor I've got going on upstairs.

All along I've been able to feel all the knots and bumps that now exist on my head. Obviously there are ones along the scar line, but about two inches farther down, closer to my right ear, there's another bumpy ridge line, just not as pronounced. So, I began to wonder, what all is making up these knots precisely? 

I messaged my neurosurgeon to see if they had pictures from the surgery so I could maybe have a visual of the skull plate they removed to get to the tumor. They responded by simply saying all of it could be found in my imaging files, which wasn't exactly helpful, as trying to find images in the recesses of MyChart is no small feat.

So, I asked the neuro-oncologist at my latest appointment, and said, "I know what I can feel with my fingers and the surgeon said it's in my files, but can you tell me what it all looks like?" 

And then he popped up this image on the screen:

I thought my eyes were going to pop out of my head. I guess I had a vague inclination that they had implanted something to hold my skull back together, but I sure wasn't envisioning this. This is an image taken straight from my latest MRI, from the angle as if you were standing over me, looking down at my skull. Mind you, things are the opposite on MRIs. The tumor is still very much on the RIGHT side of my brain, even though it appears on the left here. 

Those three 'stars' are what's called burr hole covers. There are two that sit directly on my scar line, what I'm calling the 'stripe.'  The third one sits farther down toward my right ear. They are fifteen millimeter titanium plates, each with six holes for four millimeter screws. So, when they cut part of my skull out in order to access the tumor, after the surgery, they simply put the bone plate back in and literally screwed everything back together. (From what I can gather, I don't actually need them the rest of my life, just long enough to let the bone fuse back together, but they design them with the intent to leave everything in. Thus, stars and (singular) stripe forever! And no, I shouldn't set off any airport security detectors.)

It is now quite possible that some day I could literally have a 'loose screw'! 

It also probably means that headstand I attempted to show my niece and nephew a few months back was maaaayyyybeee not the best idea. 😬

Once I put my eyeballs back in my head after that discovery, we further discussed the MRI findings, which showed that technically the tumor had shrunk evvvver so slightly, but he still classifies it in the stable category. But let's go with the shrunk category just for kicks! 

I start my next round of chemo tonight, which is cycle seven and puts me past the halfway mark! We are still doing the same dose I've been doing for the last several rounds, but I do keep running into bumps with my platelets and white blood cell counts dropping. They were both low this time, but apparently not enough to delay things, which surprised me.

I had an appointment with the seizure doc today for routine follow-up. We are going to switch some things up with the meds to see if we can curb this drowsiness I've had every day since last June when I started chemo. I told him if I'm choosing between a daily nap or a seizure, I'm taking the nap. So, it's not that I'm wanting to go too crazy with any changes, but I'm certainly more open to changes than at my last appointment, the more time passes from the last episode. I definitely want to err on the side of caution, but my life is definitely oriented around that morning drowsy spell. 

The non-arched St. Louis Arch

I started back to the gym once a week. It feels soooo good to have certain muscles moving again. Everything is still super slow and super gentle. My body has been wound so tight for so long that I just have to start by getting some things to loosen up. 

See also my spine, which is anything but loose.

I've had such stiff posture for the last ten months, using everything in my low back to hold me upright, that I don't even have enough stretch in my spine to put my socks on. So, one of the things we started with was just a simple reach, trying to totally let go of my spine so that I could get some curvature back. I bent over and Michelle, the co-owner of the gym and trainer at present, gently tapped my lower spine and asked if I could get anymore bend to it. I told her, "Michelle, I feel like a camel right now, I've got so much curve in my spine." I could tell by the sound of her voice, and the near-silent chuckle coming out of her that this was most certainly not the case. "I could serve drinks on your spine," she said in quiet, amused tone. She had me move over so I could see in the mirror. Yep, flat as a board. I kid you not, I felt like my spine was in the shape of the St. Louis Arch. Maybe they also put titanium rods in my spine while they were putting my skull back together with titanium plates.

But hey! We all gotta start (over) somewhere! I mean, good gravy, ten months ago, I wasn't allowed out of my hospital bed because I couldn't be trusted to stand upright, let alone walk, or touch my toes, for that matter.

So, hopefully in the coming months, my spine can maybe move from 2x4 straight to a little bit more of an arch. 

Here's to the stars, stripe, and some-day arches!

Time to Face Facts

As I mentioned in my previous health update, I recently had to submit my current FMLA paperwork to my HR department a month or so ago. When I got the completed forms back from my doctor, I noticed the answer to the question of how long they estimated my "condition" to last and the answer was simple and blunt: "Lifelong, non-curable." 

Well, then.

Welcome to life on Planet Earth, Courtney, in case in the course of the last year you lost track on which planet and in which body you dwell.

How do we move through life being confronted by things such as lifelong, non-curable conditions, and yet still have faith that the story could go another way?

We respond by following in the footsteps of Abraham, a man whom God had promised would become the father of many nations, despite having no children:

Without weakening in his faith, [Abraham] faced the fact that his body was as good as dead—since he was about a hundred years old—and that Sarah’s womb was also dead. Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised (Romans 4:19-21, NIV).

I can face the fact that I have a lifelong, non-curable form of cancer. I can acknowledge it, I can talk about it, I can accept that as my reality. I have cancer. Period. End of sentence. It doesn't need to be followed by any other statements. It can just hang there. No ribbons. No bows. No nice, tidy packaging. As we like to say around here, "Ain't no use trying to put lipstick on a pig."

I have cancer. It is incurable, and I will have it until I die.

Facing that fact doesn't weaken my faith or make me less of a Christian. There can be the temptation in certain theological camps among us that if we admit to a limitation of the body, we, by extension, admit a limitation of God, as if the one precludes the other. For example, some might say that someone isn't healed of something because that person didn't have enough faith to be healed. But if I think about that long enough, I can’t help but wonder if the twisted underbelly of that statement is, “You admitted defeat and that just isn't something with which God is willing to work.”

People who make such statements, believing my volume of faith, or lack thereof, is directly tied to my healing cause my blood pressure to instantly rise.

Facing reality does not mean my faith simultaneously vaporizes. This is not a zero-sum game.  

There are some of you that can face the fact that doctors have told you you’ll never bear children. There are some of you that can face the fact that you are in a wheelchair and will be for the rest of your days. And you can face those facts without weakening in your faith, just as Abraham faced facts about his body, which was "as good as dead." 

"Yet he did not waver through unbelief regarding the promise of God..."

Yet he did not waver.

We can face the realities and limitations of this body in which we dwell, and yet not waver in the belief the God who made this body can work miracles.  I can trust a limitless God who can do the unimaginable with my limited body and limited imagination. 

I can face the fact that I have a life-long, incurable form of cancer.

And yet, and yet, still not waver in my belief in God and his promises, or that he can pluck this tumor from my brain and make me cancer-free.

We can face the limitations of who we are while also trusting in a limitless God.

I love how Romans 4:18 frames it, "Against all hope, Abraham in hope believed and so became the father of many nations, just as it had been said to him, 'So shall your offspring be.'"

We have permission to hope against all hope, against all science, against all doctors, against all medications, all of it, but that hope still has to be rightly placed. Disappointment - and anything along its continuum - is always attached to misguided hope, 100 percent of the time. 

Next to a section in Romans 5 in my Bible, I scribbled a note years ago, sandwiched between other notes that says, "Misguided and misplaced hope always results in disappointment."

It's a comment on verses 3-5: "Not only so, but we also rejoice in our sufferings, because we know that our suffering produces perseverance; perseverance character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us" (NIV).

That family member of yours go and do something you didn’t agree with and you’re disappointed? Perhaps at the root is a misplaced hope because you hoped they would be something more than human and less than sinful. 

You thought you’d get that scholarship for school but didn’t and now you’re discouraged? Perhaps at the root is a misplaced hope because you thought life would always go your way and the path would be easy. 

You thought the person you voted for President would win but didn’t and now you feel this sense of impending disaster? Perhaps at the root is a misplaced hope because you thought your fate and the fate of a nation was tied to a singular human. 

You thought you’d marry that woman that was everything you’d always dreamed of but now there will be no wedding bells and you're disillusioned? Perhaps at the root is a misplaced hope because you made her - or the idea of marriage - your idol. 

You thought your adult child would be home for the holidays but couldn’t because they went to their in-laws instead and your dissatisfied? Perhaps at the root is a misplaced hope because you thought people would bend to your will like you wanted. 

Dare I even say it's possible to have a misplaced hope in God himself? 

You thought he’d protect you from pain but didn’t and now you are disenchanted with the notion of him? Perhaps at the root is a misplaced hope because you thought God was a genie in a bottle whose primary job was to never let you or anyone you love suffer. 

You thought he’d grant you a life with every longing fulfilled but here you are, still longing, still unfulfilled and now very much discontented? Perhaps at the root is a misplaced hope because you thought your life was going to work out in a very linear fashion, thankyouverymuch. 

You show me the depths to which you are disappointed with man or God, and I will show you the depths to which your hope was misguided or misplaced. I’m not saying we should be unfazed or unmoved by the world and our experiences, that we become unfeeling robots. And I’m not saying we can’t hope for things or expect people to act in a certain way. And I’m not saying we can’t ever be disappointed. Disappointment in and of itself is not sinful. 

What I am saying, though, is that when we are disappointed, disillusioned, devastated, dissatisfied, etc., we need to take stock of what that disappointment indicates and pause long enough to consider whether our hope was pointed to something or someone that it shouldn't have been. There has to be something much greater and much stronger than broken man and a broken world that holds our hope together. Because when we look to incomplete, broken things to complete us, that’s a lot of pressure on something that was never designed for such a load. When we hope in broken things and we find they don’t do what we thought they’d do, the end result is that they will break us.  

There's a line in the movie Paper Towns I have come back to often over the years to check my own roots of disappointment, “It’s a dangerous thing to believe a person is more than a person,” meaning it's dangerous to believe that the people around us are something other than what they are, that they are what idealize or romanticize them, or dare I say, idolize them to be. I haven't fully thought this through so maybe I’m off,  but my guess is that Jesus never experienced disappointment, and not as a result of being perfect, though he was, but as a result of always properly placing his hope where it belonged, chiefly in his Father. It says in John 2:24-25: "During the time [Jesus] was in Jerusalem, those days of the Passover Feast, many people noticed the signs he was displaying and, seeing they pointed straight to God, entrusted their lives to him. But Jesus didn’t entrust his life to them. He knew them inside and out, knew how untrustworthy they were. He didn’t need any help in seeing right through them" (The Message).

Jesus was no fool. He knew those people had a misguided and misplaced hope, a hope placed not in Jesus himself, but merely in the signs he performed. But Jesus knew where his hope needed to be, and it wasn't in men or the world around him. He knew of what men were made and that they were not designed to bear the weight of his hope. They would soon be nailing him to a cross. So, no, he knew not to put his hope in them. His hope was in his Father.

He put the right hope, in the right place, and he was not disappointed. He was instead "exalted to the right hand of the Father..." (Acts 2:33), a place where nothing is misplaced or misguided.

I can face the fact I have a lifelong, non curable form of cancer without it breaking me because my hope is in something greater than this broken body. 

It is in Jesus. 

___________________________

Comment on comments:

I had an epiphany at 4:26 am this morning while my heart and mind were on fire with this post and I was frantically texting words and thoughts into my phone, willing my fingers to keep up with the pace of my brain. (Remember the days when it took me an HOUR to type out a single post?? Praise God that is no longer the case, as this post probably would have taken me something like 36 hours to punch out!) 

I had historically asked people to include at least their first name, but I realized requesting people to include their name or their initials in the comments was perhaps inhibiting folks. The request was born out of my own curiosity and desire to know who was sitting on the other side of a post. One-sided conversations can only last for so long. (Thank you, though, to those regular commenters! I have read everything you have posted and find them helpful and encouraging!)  But I also know there are plenty of passive observers out there who are quite content to be unknown but still have thoughts on what I write and would maybe like to share. (Or maybe you just want to say "Hey, can you make your font bigger or the layout different on your mobile version?" I'm also open to hearing things that would help the reading experience better/easier.)

Time to fling the doors open wide. 

Let’s hear it from all you anonymous folks in the back and the balcony! 

You’re under no obligation to include your name (not that you ever were, technically, but I know peer pressure is a powerful thing). Since I’ve restricted the ability for the site to be crawled by search engines, I know the only way you’re reading this is if you got the direct link somehow. You either know me or know somebody who knows me, or are somehow my kindergarten teacher’s second cousin by marriage. However the six degrees of separation may work, comment away if you so desire!  Maybe we’ve never even met in real life but you faithfully read; I’d love to hear from you, namelessness and all. 

Now, you declare your undying love for me and ask me for my address without sharing your name, I’m going to regret opening this door, and somehow wish I did know your name so I could file a restraining order against you. You can be anonymous but don’t be creepy anonymous. Deal?