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. 

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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. 

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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?

Ex Cancer, Scientia

Ex luna, scientia. 

From the moon, knowledge.

This was the motto of Apollo 13, a mission on which NASA intended to complete a lunar landing, conduct experiments, and gain knowledge of the planet. Only the crew never made it to their intended destination. They were thrown wildly off course when an oxygen tank exploded and disabled part of the life support system.

Instead of being famous for landing on the moon, astronaut Jim Lovell would be famous for uttering the words, "Houston, we have a problem," which was a bit of an understatement in hindsight. On the morning of my first seizure that led to the discovery of my tumor, I texted a friend later that morning while still in the ER and wrote something to the effect, "Well, I've had a bit of an eventful morning..." We laughed about it later because she told me only I would utter such a statement relative to the circumstances. It was my own way of saying 'Houston, we have a problem.'

Because I definitely had a problem on my hands. God went and stirred my O₂ tanks, so to speak, which led to things blowing up, and the trajectory of my life forever altered. I wasn't entirely sure at the time how I was going to make it back to Planet Earth, back to safe, familiar ground. And not just make it back, but make it back using the best trajectory for re-entry that didn't leave me incinerated in a blaze of fire and ash. Two surgeries, a round of radiation, more seizures than I cared to experience, a lot of rehab appointments, and six of twelve cycles of chemotherapy later, we might just be getting somewhere that doesn't involve a constant sense of waiting for things to blow up.

After the brain biopsy in February of last year and the confirmation of the diagnosis, there was a lull between that and the craniotomy in mid-April. In that space, I reached out to Michelle, co-owner of the gym, and asked if we could see about putting some workouts together while I was out of commission and wouldn't formally be in the gym anymore, but with all these caveats of what exercises were off-limits because of the weakness and motor control issues I had, even before the craniotomy. 

I asked her if she had ever seen the movie Apollo 13, particularly the one scene where some of the guys from Mission Control dump a pile of parts on the table and then tell the rest of the team they have to assemble a makeshift carbon dioxide filter using only items taken from the pile of parts. She was familiar with the scene, and I said, "That's what this feels like. 'Here's all the working parts Courtney has, guys. Let's figure out how to get her home, using only this, this, and this.'"

I went to the gym today for a formal baseline assessment session with Michelle, the first since the seizure one year ago. As a joke, I bought us both stickers of the official insignia of the Apollo 13 mission. I now regularly use the phrase "Let's Apollo 13 this thing," in a variety of life circumstances, meaning let's figure out how to rig this thing - whether this 'thing' is my life or whatever else the phrase may be applied to - together with the limited resources we have. 

I wanted - and still do - anybody and everybody who knew anything about cancer and health at the table, housed in my Mission Control. I can't make it back home alive based on my own knowledge, no more than Jim Lovell could have gotten himself, Fred Haise, and Jack Swigert back to Planet Earth alive based on his own knowledge. He needed every ounce of knowledge housed in Mission Control to figure out the math and science necessary to keep them on a path headed home, and preferably with a pulse.

Neuro-oncologist? Pull out every degree and every shred of knowledge you have ever encountered in your years of medical training. Go.

Neurosurgeon? Review every surgery you've ever done like this before and study it backwards and forwards. You better know the brain like the back of your hand. Go.

Occupational therapist? Find the exercises necessary to address neurological issues on the left side of the body. Go.

Radiation oncologist? Show me exactly where and how this radiation is about to go down. Explain it to me in layman's terms. Go.

Nutritionist? Tell me what is going to optimize my existence and not leave me wasting away to nothing. Go.

Physical therapist? Start talking. Go.

Acupuncturist? Break open those needles. Go.

Speech therapist? Pull a seat up to the table. Go.

If I thought someone possessed knowledge I didn’t have and if it was knowledge I thought was going to keep me alive, I wanted them in Mission Control. 

Ex cancer, scientia. 

From cancer, knowledge.

But I also was gaining my own knowledge that would never be found in a textbook, nor in anyone else's medical degree, skillset, story, or memoir.  It was knowledge I could gain only through the process itself, through everything falling apart and things being shoved wildly off course. This entire blog from the last year could serve as Exhibit A, the things I've been learning from and because of cancer. Knowledge unique to me and me alone.

It has been very expensive knowledge to gain. And there was no way I could have studied for it, just like none of the NASA guys had ever had to figure out a way to make things fit together that were never designed to fit together in the first place in order to keep the crew from dying of asphyxiation. But they did. They Apollo 13'ed the thing.

Jim Lovell may not have made it to the moon on that 'failed' mission, but he did come back to Planet Earth alive and, I imagine, with knowledge. It wasn't knowledge of the moon, as there would never be a lunar landing for Jim in his lifetime. But I have no doubt he came back to Planet Earth with a different understanding of the world he once knew - perhaps a better, richer, fuller understanding. 

I don't know what my equivalent of the 'moon' is, but I can't help but wonder if the knowledge I gained by not landing there is infinitely more valuable than the knowledge I would have gained if I had.

From sorrow, knowledge.

From joy, knowledge.

From peace, knowledge.

From disability, knowledge.

From grief, knowledge.

From adversity, knowledge.

From depression, knowledge.

From anxiety, knowledge.

From hope, knowledge.

When our lives are thrown off course and leave us in places we never expected, are we willing to be trained by that experience, to gain wisdom and knowledge from it? Or will we allow bitterness and resentment to settle in, defiantly refusing to have our sharp edges smoothed, because things didn't go like we planned?

Ex luna, scientia.

Ex cancer, scientia.

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Health Updates

Ya know, there's nothing quite like reading fresh FMLA paperwork that your doctor just filled out, and in the space where it says to "provide your best estimate of how long the condition lasted or will last," they simply write "life long non curable." Womp, womp, womp. To see it written like that wasn't any sort of fresh punch in the gut. It's just reality. Kinda like, "Well, isn't that a bummer."

In other far more exciting news, I got my first legit haircut since last February that a) was by choice, and b) did not involve me shaving it! All of the hair I lost due to radiation (the left photo, which was kind of the worst point of the hair situation) has grown back in (the right photo), although the length still doesn't quite match the other side where I didn't lose any, but we're slowly getting there. I actually don't think I'll go back to my old hair style. I rather like this shorter cut. I just need more hair to keep my head warm. I still wear a beanie almost 24/7.

I was supposed to start chemo cycle #6 last week, but my platelets dipped again last blood draw, not as low as cycle #4, but enough that we needed to delay so that they could rebound some before moving forward. They rebounded enough by this past Monday that I started the pills this past Tuesday night. 

Once this cycle is done, I'll be at the halfway mark. I have my next MRI scheduled for the end of this month, as well as a six-month follow up with the radiation oncologist. I will also have a six-month follow up with the seizure specialist at the beginning of March. So, generally, a handful of benchmark/follow up appointments coming up.

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To The Woman of One Year Ago

Next week marks one year since life was upended - February 3 was the first seizure, February 5 was the brain biopsy, and February 7 was the day of the official diagnosis - and I've been thinking a lot about what I wish the me of one year ago had known about what was about to unfold.  If I could stand face-to-face with that woman, what would I tell her? I've always been someone who likes to know what to expect in advance. It's probably partly why I enjoy my job as an event planner - I can help other people know what to expect, where to go, what to do, how to navigate events and spaces. When you know what to expect, you take the edge off the uncertainty and ambiguity, lessen the anxiety associated with the unknown. Except that's not life most of the time. Most of the time it's hairpin turns that weren't on the map. It's hurricanes forming offshore that no meteorologist saw coming. It's loss and death and grief and heartbreak that were just hanging out in the abyss of some unknown you had not yet encountered. Life is punctuated, italicized, bolded, and underlined by the unknown.

If I could take the collective experience of this past year and give a grand speech to the me of one year ago, what would I say to her about all that is about to happen, to help her know what's coming around the hairpin turn? (Yes, I know parentheses would not be used while speaking, but let's overlook that fact for the sake of this post, shall we?)

This is what I would tell that woman:

You and I both know you like to walk into situations knowing what to expect. So let me help you manage those expectations about how the next twelve months are about to go down. (Your neuro-onc will be exactly zero help in this department. You will come to despise the phrase, "It's different for everyone," which is basically a non-response response he will use so many times you’ll want to launch out of the exam chair and slap him. I’m not saying you will do such a thing; I’m saying you will want to. Just ask your parents. They were there to witness the moment.)

You are on the edge of a precipice, you just don’t know it yet. You are about to free fall into what will oddly be the most gloriously hope-filled while simultaneously most misery-filled time of your life. You will take up swearing with greater regularity than ever before; particularly and surprisingly, the F-word will be your word of choice. You will toss around F-bombs like candy at a parade. (Your mother will not be pleased, your friends will be surprised, but in turn, you will be surprised to learn one of your sweetest book-loving friends will violently launch a book across the room when she learns of your diagnosis. You have good friends who know when it's okay to throw things and drop F-bombs in your honor.) You will finally get to fulfill that secret wish of yours to shave your head, but not under the circumstances you would have ever envisioned. In fact, you’ll shave it so many times eventually you will stop crying when you do it. You accept it as a new normal. (But you should still ask the neurosurgeon to shave your head in its entirety during surgery in April, none of that partial nonsense. You are going to look ridiculous when he does that.)
 
Your search history will soon be filled with words like “oligodendroglioma,” “Temozolomide,” and “morbilliform rash.” But you made the right call on not searching for the prognosis for cancers such as yours. The answer won’t matter to you then and it still won’t matter to you now.
 
You will face days that are unimaginably hard, the hardest of your life thus far, and when you scan the horizon line of your future, you will wonder if the light will ever peek over that line again. It will. You will scan that same horizon line of the future and wonder if your left arm will always be this clumsy, dysfunctional thing attached to your body, destined to a lifetime of one-star Yelp reviews and tremors. It won’t. And yes, you will get through more than one rehab appointment without crying. Pinky promise.
 
You will discover that chemo and radiation are not the blackholes you thought they’d be. Sure, there will be bad moments, but take to heart now the words a friend will speak to you in the wake of your upcoming surgery in April: “So often we dress rehearse tragedy instead of joy.” Dress rehearse joy. Don’t dress rehearse puking your guts up. Don’t dress rehearse a neverending life of depression, sadness, grief, and death. Dress rehearse a life filled with joy amid the sorrow and a peace deep in your soul that can only be explained by Jesus. Dress rehearse the day when the seizures stop because the day will come when they do.
 
You will be overwhelmed by the sheer volume of mail, texts, and gifts you will receive from friends from all stages of life. You’ve spent decades collecting and investing in these friends, now reap the benefit. They want to love you, and they want to show you, so let them. None of them are going to care if you send a thank you note or not. Just don’t communicate with anyone in a written format for about a week or two after your surgery in April. Girl, just don’t. The writer in you is going to look back at texts and be horrified at the gibberish you communicated. Spare yourself the embarrassment.

Ignore your neurosurgeon; get that neuro-psych eval scheduled, no matter how long he tells you the wait is or that the results won't be of any value. 

Don’t procrastinate on scheduling that appt with the integrative oncologist.   

There will be that stretch in April and May racked with seizures, rehab, depression, and overwhelming grief and fear about starting treatment. You will feel like you are in a dogfight worthy of Top Gun. It will be no walk in the park, Kazansky, I can assure you. But I can also assure you eventually the fighting will ease and you’ll find yourself back on solid ground and your plane intact. Sort of. Mostly.  

Don’t go back to work a mere 3 weeks after your April surgery. Give yourself more time. You’ll have ample time off stashed to cover yourself. Take a chill about whether you're going to lose your job and your health insurance. It's going to be fine. 

Don’t bother with the ginger chews for nausea. They’re like sucking on Pledge-flavored taffy. You don’t like ginger to begin with, so don’t kid yourself. 

Go to Kristina’s wedding in July, and wear that black dress you bought inspired by Erin Krakow in the Hallmark movie It Was Always You.

Celebrate your 40^th at your own house with your friend Emily, not some cabin in the woods. Because at that point you’ll still be living with your parents (Surprise! You’re about to move in with them for seven months!), so going to your own house is going to feel like a treat all its own.   

Be patient with yourself. Rome wasn’t built in a day, and neither will a brain with a 2-ish inch tumor heal in a day. Your body is about to do all sorts of weird things. Keep calm and carry on. 

Don’t take that antibiotic during radiation. Save yourself from the most ridiculous rash of your life.

Watch out for that day when you go to Amish country with your mom in October. Load up on that anti-nausea medication. 

Watch out for that lady who asks you for medical advice on that live radio interview. 

You will learn to hug your mom, really hug her. Gone will be the days of that half-hearted wimpy stuff you’ve spent most your life doing. And you and your dad are going to develop this odd little handshake that isn't really a handshake, but a series of fist bumps, hand fireworks, and head rubs.

Don’t worry, you’ll be able to renew your driver’s license without having to take a photo of you with no hair. The wonder of progress is that bureaucracy isn’t always destined to exist in the Stone Age. They’ll let you renew your license using your old photo. And bonus! You won’t even have to leave your couch to do it.  

You won't discover until the end of cycle four about the secret-ish oncology-specific lab on the third floor that gets your blood results before you even get out of the parking garage. Take advantage of this lab from the beginning.  

Oh, and make sure you keep all your trash cans emptied and ready for chemo cycle four.  Brace for impact on that one. Just go ahead and skip the dress rehearsing joy part because it ain’t happening. 

And for the love of Pete, cut sugar out sooner so that your shoulder quits hurting, ya big dummy.  

And then, I would close by saying to that woman, pressing one hand to each side of her face ever so gently, pull her close, look her dead in the eye, and whisper with conviction, “Your God is good and your God is sovereign, just like you told the nurse on the day of your diagnosis. He’s going to prove it, and you’re.going.to.make.it. One day at a time. My God, woman, you're going to make it.”

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Health Updates

I figured if my great-niece Stevie can get her own monthly photos posted of the first year of her life, why can't I do similarly and post yearly photos even though I'm 40? While it's not one year since the surgery and shaving my hair, I am happy to say I've now got a bit of a Will Howard-esque (QB of Ohio State for all of you non-football fans) haircut going now. It's just a touch too short to fully cover my scar, and I still live in a beanie hat practically 24/7 (it's amazing how much heat you lose from your head!), but it won't be too long before I go back to my stylist and get it trimmed evenly.

This latest cycle was significantly less dramatic than the last one, thankfully. No vomiting, no laying on the bathroom floor. Nausea? yes. Decreased appetite? Yes. I'm trying to pack on some weight as I've lost 15 pounds since the surgery. There wasn't much of me to start with so I'm working on getting healthy food in me when I can. Although, that donut I ate a couple weekends ago was gloriously delicious.

I saw the neuro-onc earlier this week for my routine monthly check-in. (And yes, he used the phrase, "It's different for everyone." Drives me bonkers.) We are going to keep the same dosage for the upcoming cycle, which will start at the end of next week (pending no squirrelly blood results) - and will mark the halfway point of chemo! At the end of February, I will have my next MRI. I will also see the radiation oncologist for my six-month follow-up since radiation ended at the end of February. 

Ultimately, I have far more good days than bad days. I'm trying to connect more with friends, but that has its own challenges as it feels like there is such a backlog of people to catch up with. The conversations that are the toughest physically are the ones where I end up shouldering most of the talking. I get winded and I can tell cognitively things start to take a hit and I get a bit disoriented at times. So, if you're around me - you're gonna have to talk about yourself, too, so I can get a break!

I'm trying to get a lot of routine healthcare taken care of - eye doctor, dentist, dermatologist, etc. As my friend said, "Everybody needs their own healthcare concierge." Keeping up with the routine stuff now feels like a chore all its own, but I'm grateful to have baselines established in other areas of my health. I'm scheduled to head back to the gym for my first session the week of February 10, which I am really looking forward to getting back into shape, slowly but surely.

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