Footprints in the Sand

Me, jumping on the shores of Coronado Island,
December, 2022

I’m not particularly fond of beaches. First, there is sand, which in my mind, is like the glitter of the natural world. It ends up in all these places you don’t want it to be. Your hair. Your eyes. Your bathing suit. Your mouth. Second, there’s sun, which also means it’s typically hot. I am not a fan of climates north of 75°.  (Thus, Alaska in December.) And I burn easily. Third, I don’t find swimming to be a particularly pleasant life experience. Any body of water larger than my bathtub has zero appeal, and even that is questionable these days because, hi, seizures and water do not mix. Fourth, beaches tend to be very people-y. Fifth, I just think the beach is boring most of the time. What am I supposed to do all day if I don't swim and I don't want to look like a lobster? All that to say, the beach is not going to be my top pick for vacation most of the time.

With one notable exception: the beaches of San Diego. Particularly Mission Beach and Coronado Island areas. These places are very sentimental for me, so I have no problems enjoying the sand, soaking up the sun, and tolerating the heat. Although, I’m still not going to get in the water. 

A precious friend of mine and her husband moved out to that area a couple years ago, and I went out to visit them in December 2022. For the sake of this post, we'll call my friend Brave One. While visiting, Brave One and I went out to Coronado Island one day, just strolling along the beach and taking in views of the famed hotel, which is gorgeous and full of history. We were there just prior to Christmas, so the place was decked out in Christmas trees everywhere you looked. When everything went sideways for me back in February, I texted Brave One and told her that someday she and I are going to walk the beaches of Coronado Island again. She is going through her own hurricane of a season, so we’ve occasionally been texting one another, checking in to see how the other is doing. We are both in survival mode.

As I was reflecting on recent life circumstances for both of us, I was reminded of the poem "Footprints in the Sand." You probably heard it, but if you haven’t, there's a copy of it here.

I texted Brave One here in the last several weeks, telling her that I'm still praying that God would let me make it back to Coronado Island and that both of us would walk those beaches again - together. 

And then I thought of the poem.

So, to my dear, Brave One. By faith I’m believing we will both walk those shores again, shoulder to shoulder. We will feel the sand in our toes, We will feel the sun on our face. We will smell the salty sea breeze. We will take more jumping photos. And we will lift our gaze and see, even if in our imaginations only, a single set of footprints in the sand, and we will be reminded of all the moments we were carried by God through the current chaos of our lives. That poem will not be mere words on a page or a cute little poem - it will be our lived experience.

And in that moment, by faith I believe we will bend our knees to worship the God who carried us through the storm, leaving behind his footprints in the sand as evidence.

Hold onto hope, my dear Brave One. The night won’t last forever. 

There's a sunrise waiting for us on Coronado Island.

PS: Look at me making plans, vague though they may be! 

 

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Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

You know you reach a new point in your healthcare when even the thought of something happening makes you take action. I was standing in the kitchen the other day at the counter, and I got a little flushed, my foot got a little tight, which tends to be a sign of a seizure coming on, so I just thought Forget this nonsense. I don't need another head injury. I’ll be proactive and just go ahead and lay on the floor. So I did. Thankfully, there was a padded rubber mat in front of the sink so I just laid on that. Nothing ever came of it and there wasn’t a seizure, but I can never be sure these days. 

I had another seizure this past Sunday, which was more mild than others, but it seems I’ve had more troubles rebounding with my motor control and strength with this one. So, that’s the third seizure in two weeks. It just leaves me and my parents all on edge because we never know when my brain is going to hit the "detonate" button and the bomb goes off. I get very nervous about going out in public now because I’m never sure if a seizure is going to rear its ugly head and make an appearance. I obviously am still going to all my appointments and rehab, so I’m not a total recluse, but it does make life tricky, never knowing when the bomb is going to go off.

June 10 is the magical start date for chemo, and June 11 is the start date for radiation. Chemo will run seven days a week for six weeks, for total of 42 doses. Radiation will run five days a week for six weeks for a total of 30 doses, which means I will end somewhere around the middle of July. Then I will have a 30 day break, and will then start 12 months of chemo. And that’s just if everything goes OK. (When is life ever linear?) They will monitor my bloodwork on a regular basis and take regular MRIs to see how things are progressing. We won’t know how my body will respond until we get into the thick of it - I may have very limited side effects, or I may have a lot. Time will tell.

I will likely buzz my hair again because I will have a pure bald spot from radiation where my hair will fall out entirely. Eventually, it will grow back in, but I’ll keep it buzzed in the meantime just so that eventually it will grow back in uniform.

Every day continues to be a dogfight. It seems I rarely physically feel good as my brain continues to heal. I still have vision problems off and on and, of course, my left arm is still getting a one-star Yelp review. My left leg is mainly weak and has some coordination issues. I originally thought I would stop rehab once radiation started, but the radiation oncologist actually encouraged me to continue at least therapy while I was actively in treatment. Of course, all depends again on how I'm physically feeling, so I'll have to wing it as I go. 

But keep making plans, y'all!

After Visit Summaries

In light of recent life circumstances, one of my new favorite hobbies is reading my "after visit summaries." These are the summaries that practitioners provide after I have an appointment with them. Given the number of appointments I've had in recent months, I could probably fill an inch-thick binder with printed copies. They provide basic educational info, but then the practitioner also provides customized notes of their clinical observations. It’s these notes I’m most curious about. What did the provider think was worth noting about our interaction? What stood out to them as worth documenting? For instance, here’s a snippet of one of my latest after visit summaries from one of my providers:

Courtney presented to the clinic today with her parents. She had a breakthrough seizure on 5/21/2024, after which one medication was increased and a second medication was continued on 750 mg po BID. She feels that she has more spasm of her LLE. She continued to have LUE weakness which is improving slowly with PT/OT. She had difficulty focusing her vision for sometime on an object or a person. She had more depression and anxiety. She denied headache, nausea, speech difficulty or visual changes.

I decided in light of these summaries, I thought it would be appropriate to write my own "after visit summary" after having an encounter with my own body. Basically, a note from me to me about my own clinical observations of my body. Here’s what I would say as a summary, complete with appropriately corresponding acronyms:

Courtney is a 39 y.o. right-handed female, who presented to the hospital on 2/3/2024 with new onset witnessed seizure, and found to have a brain mass. She now sleeps under the watchful eye of a baby monitor camera because her body can't be trusted to be left alone. It appears her left arm is a bit of a honey badger, which is to say it doesn’t care most of the time. IYKYK. And her left leg is a bit of a baby honey badger, which is to also say it doesn’t care, but it at least does a better job at hiding its obnoxious behavior and has the decency to at least exhibit some good manners on occasion.   

Her eyebrows seem to be getting more exercise than the rest of her body because her brain thinks that by raising her eyebrows, they will be able to assist in raising her honey badger of a left arm. This, of course, doesn’t work. LOL

Patient routinely appears as a sobbing hot mess to appointments. SMH.

Her seizures are as unpredictable as Steamboat Geyser in Yellowstone National Park. 

It also seems she's made some questionable fashion choices lately, which maybe isn’t anything new, but at the very least she maybe should not wear blue and white floral leggings again with the red and white plaid button up shirt. OOTD. The goal of her craniotomy was for the surgeon to remove her tumor, not her ability to discern what it takes to look presentable in public. She also should not be trusted with sharp objects or priceless fragile family heirlooms. Turns out honey badger of an arm really is not helpful when wielding a knife.

She also looks like a skunk Chia Pet. 

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Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

This last week felt like an all-out slugfest. I had rehab to start the week, and then I end up having another seizure Tuesday evening. On Wednesday, I had a follow up appointment with the neuro-oncologist to discuss both the seizures and how to manage them, and next steps for chemo and radiation. I had to sign the consent to treat forms, agreeing to undergo chemo, and I felt like I was signing my life away. I was crying so hard I could barely see the line where I was supposed to sign. On Thursday morning, I had a consultation with radiation oncology. She was the bright spot in the week. A really lovely doctor. And to our delight and surprise and relief, a family member of ours will be my radiation nurse. Just nice to have a comforting face amid the chaos. So by the time I got to yesterday, I really did not feel like leaving bed. I can tell my stress levels are through the roof. Anxiety is wreaking havoc, causing so many symptoms that it’s hard to tell what’s a side effect of medication versus residual effect from seizures versus stress and anxiety. 

Emotionally, it has just been an incredibly overwhelming week. As much as I was averse to it, the neuro-oncologist did recommend I take an anti-depressant medication. I’ve slept horribly the last two nights, which I would chalk up to anxiety. My body is so tense all the time. I’ve learned over the years that your body will always tattle on you eventually, so even if you don’t feel that stressed mentally, it will show up in some form or fashion somewhere else in your body, which is what I think is happening here. I continue to have problems with my vision, and my left leg is always restless, and I think a lot of it is just anxiety playing out across systems. While I was reluctant to introduce yet another layer of meds, I’m hopeful this medication will bring some relief and support to get my body to calm down amid all the stress and chaos. I'm willing to concede when it's time to wave the white flag. I am not Wonder Woman.

I don't have an exact start date, but chemo and radiation will likely start by mid-June. I will have radiation every day, five days a week for six weeks for a total of 30 fractions. On top of that, I will take chemo (mine is a pill) for 7 days a week for 6 weeks. Only time will tell how my body responds to all of this, but it is a deep source of anxiety the closer I get to the start of it. Your continued prayers for supernatural peace, calm, and joy are appreciated.

Keep Making Plans

If you drive to the top of the parking garage of the healthcare facility where I’m receiving care and look to the south along the highway, you will see a billboard with bold text in all capital letters that says "KEEP MAKING PLANS." It’s an advertisement for their cancer treatment program. 

As someone who is in the active throes of receiving treatment for cancer, this is quite possibly the most absurd and laughable marketing slogan I’ve ever heard. I understand its intent, and the hopefulness that it’s meant to convey, this idea that we as a healthcare institution will help carry you through this process of cancer and someday you will make it out on the other side, so keep making plans in the meantime. 

But why this is so laughable to me is the fact that I have no idea when my brain or my body is going to betray me, so making plans feels nearly impossible. My life is now measured minutes and hours, maybe days, but definitely not in weeks or months, and certainly not in years. Any thought of the long-term future immediately feels overwhelming and distressing to me. I have no idea how to keep making plans when I’m not sure what a day is going to bring.

Exhibit A: Take for instance this past Thursday. I was in the middle of a Zoom call for work. (Yes, I’m also trying to hold down my job in the midst of all this. I started working in small doses 2 weeks after I was discharged from the hospital, which was 3 weeks after surgery.) I could feel a seizure coming on, first in my left leg. I had enough time to both mute and turn off my camera before the worst of it hit, thankfully, and I had time to yell for my mom, as both my parents were around, also thankfully. (My parents are saints, and I have no idea how I would make it through this process without them.) 

My mom came running in, and by that point, my left leg had totally seized up, and I couldn’t move my left arm in the slightest and convulsions were repeatedly unfolding. I have what's called focal seizures, which are different from generalized seizures, which affect the whole body. Focal seizures affect only one part of the body. So, when I have a seizure, it affects only the left side of my body, and I generally never lose consciousness. I can also typically speak while they are happening. My mom grabbed my left hand while my dad held my left leg steady. Thankfully, I was sitting in a chair already and not walking around or doing something; otherwise, I would have undoubtedly come crashing down.

I had plans to go to rehab that day, but clearly my brain had other plans that day. Which is why that marketing slogan is so ridiculous to me at times. How do I keep making plans when I never know when my body may decide otherwise? I appreciate the intent and hope of what that slogan is attempting to convey, but in the midst of the chaos, it feels virtually impossible to keep making plans. I can't even make plans to get to rehab in the course of a single day.

So, I decided to ask ChatGPT if it had any other alternatives to the slogan. This is what it offered up:

1. "Keep scheduling uncertainty"
2. "Keep planning for surprises"
3. "Keep penciling in the unknown."
4. "Keep arranging for the unexpected."
5. "Keep RSVP-ing to uncertainty."
6. "Keep preparing for plot twists."
7. "Keep reserving for the unpredictable."

Ir seems for the time being my best alternative to "KEEP MAKING PLANS" is "KEEP PENCILING IN THE UNKNOWN," and to keep living life one hour at a time. 

Thank God his mercies are new every morning.

And every hour.

Because of the Lord’s great love we are not consumed,
    for his compassions never fail.
23 They are new every morning;
    great is your faithfulness.
24 I say to myself, The Lord is my portion;
    therefore I will wait for him.”

Lamentations 3:22-24

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Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

Here’s the wild part to the seizure I had on Thursday. While it was happening, I felt this involuntary prayer slip out of my mouth, barely above a whisper. I just said, "Jesus, make it stop." And instantly, and I do mean instantly, the convulsions stopped and my muscles stilled. Now, I still couldn’t move my left leg or arm because I lost all motor control, but I was the worst of the seizure did indeed stop. We eventually got a hold of my oncologist to see what we needed to do next. As much as I loathe the idea, he upped my dose of my original seizure medication, the one that causes depression, and upped the dose of the new seizure medication. So I’m on both now meds now. I didn’t have to go to the hospital, but I did wipe all my appointments for the rest of the day, including all of my rehab therapies and an acupuncture appointment I was supposed to have. I ended up sleeping most of the afternoon.

Apart from the seizure, the beginning of the week was equally emotionally tumultuous because I had an appointment with the oncology nurse to discuss the basics of chemo and radiation. Based on what she explained, if my body can hack all of the cycles, I will be in treatment for a little over 14 months. It just makes me feel like my life is about to disappear into the Bermuda triangle of cancer, where things go in, but mysteriously never come out. I started to drown in the notion that I’m about to lose a year of my life to treatment. That’s where things really start to feel overwhelming if I think about the future for too long. I also started seeing a counselor earlier this week, and I think she’s going to be incredibly helpful as she specializes in chronic health conditions. I loved her bit of wisdom: "Only rabbits belong in the rabbit hole."  🐇 I keep rehearsing that to myself over and over again.

While I do feel like there’s still some residual effects from the seizure, I did manage to make it to an appointment with my occupational therapist on Friday, and he seemed encouraged by what I was still able to do. So while I personally feel like there were some grip strength and motor control setbacks after the seizure, he was still pleased with what I could do. It’s hard for me to remember those things, that not all is lost despite my perception telling me so.

Next week, I will continue to have rehab and I will have a follow up appointment with my oncologist on Wednesday. I’m sure we will discuss everything that happened with the seizure and the increase of the medication, but we will also discuss next steps for chemo and radiation, including the timeline for when it will actually start. I will also have a consult with the radiation oncologist on Thursday morning. We will go over any questions I have about the process and also discuss the timeline we map out with my oncologist.

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Prayer requests:

1. Pray that no more seizures would occur.
2. Pray that depression would not take hold as I get back on the original anti-seizure medication.
3. Pray that I would be radiant through radiation (I've been praying this one a lot as I prepare for next steps.)
4. Pray that I would love Jesus more and more and that my gaze and my thoughts would be fixed on him amid the trials.
5. Pray that I would be winsome and tender-hearted through this process.

On Which Side Will You Sing?

I'm a little less than one month since surgery. And with a total of 41 staples to my head in the last 3 months, I'm feeling and looking a little less like Frankenstein these days and more like a Chia Pet. As previously noted, I had to buzz all my hair post-surgery (there was no good way to salvage the surgeon's handiwork. Also as previously noted, neurosurgeons don't always make for good barbers), so I've had a pretty short buzz cut going this past month. It's slowly growing out, taking on a slightly fuzzy look with a deep trench running down the middle where my scar is and no hair has grown back thus far.

I haven't ventured out beyond my parents' house very much in recent weeks other than for medical appointments, mainly because I just don't feel great a vast majority of days. I tuned into the online service at my parents' church this past week and the sermon was incredibly timely, so much so I've listened to it twice now. I frantically took notes the second time around. So many reminders I needed. It was about suffering and how we respond to it. One such response is to worship God, which feels so dissonant at times and certainly is not my intuitive response, though I wish it was. I immediately thought of a piece I wrote a little over four years ago. I included it in its entirety below. The circumstances noted are obviously not my current circumstances, but the bottom line truth remains and I think it is worth repeating, especially now. I spoke of this before, but one of the hazards as a writer is that you find you write something, thinking it's for some other intended audience, but really it's just the past you writing to the future you. This piece is a prime example. 

I don't want to reach the other side of this chaos and discover I missed an opportunity to worship God because I was too busy being a narcissistic navel-gazer, consumed by my own pain and sadness. Look, I write not as an expert on this matter. I've had cancer for all of like 5 minutes, so I'm not sure that merits me any kind of authority on what it means to praise God amid suffering, loss, and grief. I write as a fellow sojourner who is in survival mode. I write as someone who is aspiring to a certain perspective, but has by no means arrived. I love what Ishah Broad had to say on this aspiration:

“Writers thrive on having regular time to reflect. We think deeply and can ruminate on ideas for months, even years. We attempt to process emotionally and mentally the narratives of life, the experiences we have, and the existence of those around us. We are often deeply empathic, sensitive, intuitive individuals with strong ideals of how things could and maybe should be. We attempt to write in a way that leads others to realize how things could be.”

I write below of what I hope is true of me when I look back some day, and what I hope is true of you, whatever your own circumstances. I write of how things could and maybe should be, not as they are. Did I praise and worship God despite my circumstances saying I should do otherwise? That's why the writer of Hebrews calls it a sacrifice of praise because it is costly and counter to our nature, "Through Jesus, therefore, let us continually offer to God a sacrifice of praise—the fruit of lips that openly profess his name" (Hebrews 13:15).

I hope to worship God on both sides of this Red Sea standing before me.

______________

Last weekend, I moved for the third time in a little over three years.

Let me just say this in light of this fact: I'm tired of pulling up tent pegs. 

I look back on my 20s and marvel, wondering who on earth that girl was who delighted so much in bouncing around the globe, restless at the mere thought of even being in one place for every long, aching far more for wings than roots. 

My mind and body must have been inhabited by some other woman back then because now in the latter half of my 30s, I am going kicking and screaming at the prospect of not being in one place for very long. I ache far more for roots than wings these days.

The decision to move is one stemming all the way back to mid-August, and the months in between were filled with stress, tears, meltdowns and temper tantrums of the adult variety. Life felt like a rollercoaster and a yo-yo all rolled into one, first searching for a house to buy, not finding anything, then deciding to rent, then deciding to search for a house again, and finally just deciding to rent again. The reasons behind the decision aren't all that significant - it was practical things like getting a new landlord who raised the rent, wanting to save more money for a downpayment on a house, and generally being sick of living below people who owned two large dogs who felt the need to turn their apartment into their own personal tumbling gym.    

And through it all I felt like God was silent. Oh, there were whispers of his promptings, but were they really him or my own thoughts? I struggled to discern, there was so much racket in my head. 

In the seeming silence, I doubted. I protested. I worried. I stressed. I complained. I panicked. I became anxious. I became fearful, consumed with self-imposed pressures and timelines. I practically begged for the heavens to open up, for angels to descend and declare, "Behold! This is the house you should buy," or "This is where you should live." My belief that God could provide evaporated in a cloud of unbelief.

No angels descended from on high, and there certainly were no words of gratitude flowing from my lips, no song of praise pouring from my heart. Not on this side of the matter.

I have thought often of the Old Testament Israelites as of late, people of tent pegs and tents, wanderers and nomads. 

It wasn't always that way. They had roots for over 400 years in one place and it was their undoing. They sank roots deep into Egypt, roots that would eventually enslave them. I wonder what songs they sang in those 400 years? Surely laments, but were there songs of praise? If they knew their prophecies, then they had to know that some day the 400 years would end, that it wouldn't always be like this, that they wouldn't always be slaves to a slave-driver. 

After 400 achingly long years of breaking backs and breaking hearts, God gave the Israelites wings and they took flight,  pulling up stakes, and fleeing Egypt.

But even with wings, there still was no song. They had the cloud by day and the fire by night, but no song. (None recorded anyway.) They had the very presence of the living God with them, but no song. They had been liberated from four centuries of bondage, but no song. 

And then their wings lead them to the Red Sea. A dead end. A brick wall of water before them and an angry army behind them. "As Pharaoh approached, the Israelites looked up, and there were the Egyptians, marching after them. They were terrified and cried out to the Lord. They said to Moses, 'Was it because there were no graves in Egypt that you brought us to the desert to die? What have you done to us by bringing us out of Egypt?'" (Exodus 14:10-11).

There is no song on this side of the Red Sea, only unbelief and doubt cloaked in terror and panic. The God who liberated us, provided for us, led us, surely he can't save us now!

But save He does. The wind roars, the waters part, the people pass and the army drowns.

And then - and then - a song. 

"Then Moses and the Israelites sang this song to the Lord:

“I will sing to the Lord,

    for he is highly exalted.

Both horse and driver

    he has hurled into the sea. 

The Lord is my strength and my defense;

    he has become my salvation.

He is my God, and I will praise him,

    my father’s God, and I will exalt him.

The Lord is a warrior;

    the Lord is his name...

Who among the gods

    is like you, Lord?

Who is like you—

    majestic in holiness,

awesome in glory,

    working wonders? 

You stretch out your right hand,

    and the earth swallows your enemies.

In your unfailing love you will lead

    the people you have redeemed.

In your strength you will guide them

    to your holy dwelling...

The Lord reigns

    for ever and ever." 

Exodus 15:1-3, 11-13, 18

It's amazing the difference parted waters can have on a departed perspective.

Will we be like the Israelites and only sing on the other side of our Red Seas? Will we only worship after we've been delivered, after we know how it all ends, and after the happy ending? Or are we willing to worship in the space between beginnings and endings, pronouncements and deliverance, prophecies and fulfillments? Is not the song on the far side of the Red Sea, when the waters have not been parted, far more powerful than the one on this side of the Red Sea? Must we always wait for hindsight to inform our worship? Why do we not lean more on our foresight, our foreknowledge, which is built on the character of God, to inform our worship? 

I want there to be a song flowing from my mouth no matter which side of the Red Sea I'm standing on because the God who saves me on one side is the same God who saves me on the other. He is worthy of praise either way. I don't want to wait for hindsight to inform and determine the song I choose to sing. 

I want God to catch me singing on both sides, no matter whether I've got roots or wings.

Great Expectations

Please kindly overlook the oh-so-ridiculously
conspicuous tan lines I had going that summer. 😳

Nearly 20 years ago, I spent a summer living in San Diego. It forever shaped my view of God and my relationship with him. I lived in Mission Beach, an area not far from Coronado Island, and worked at Sea World San Diego. (Before you even have to ask, I saw exactly one Shamu show the whole time I worked there. I worked in the employee kitchen and did food prep, so not a lot of quality bonding time with Shamu happened. Sorry to disappoint.) I was there on what's called a Summer Project, which is basically a ministry opportunity for college kids through the Christian campus ministry I was heavily involved with all four years of college. We worked full-time at Sea World, but then also did regular outreaches at local colleges and in partnership with local churches.

There's a moment from that summer, though, that has been bouncing around in my head here lately like a pinball. When I say things happened that summer are still shaping me, this is what I'm talking about. 

The director of the project was a guy by the name of Dan Allan. There were about 120 of us college students and then a handful of staff members. Dan was teaching one day as one of the lead staff. I can't recall what specifically his topic was. I just remember he was super intense about it, maybe one step shy of yelling, and he was gesturing a lot. But what he said that bright sunny day in San Diego is what's pinging around in my head even now, 19 years later. He said, "Life wouldn't be so hard if we didn't expect it to be so easy."

"Life wouldn't be so hard if we didn't expect it to be so easy."

I've been getting myself into a lot of mental and emotional trouble here lately because I keep thinking at some point in this process, particularly rehab, it is going to get easier, that I'm going to catch a break and find some relief from the storm or that my left arm is suddenly going to start doing everything I think it should be doing. But instead, I keep being met by challenges and adversity. Why does this keep surprising and frustrating me? Because I have an expectation that at some point it will all get easier.

Which is why everything just keeps feeling harder and harder all the time.

I had a good old-fashioned meltdown during my speech therapy session this week. Keep in mind, when I say "speech," it's not that I can't functionally speak. Speech therapy, in my case, is primarily focusing on cognition. So, when the speech therapist slid a cognitive exercise in front of me on Thursday that I couldn't make sense out of, I immediately felt my anxiety levels rise and tears pool in my eyes. It went downhill from there. Tears, tissues, snot, and all. Which then bled over into my occupational therapy appointment, and I had a good cry in front of him, too.

I wish somehow when the surgeon went to remove as much of my tumor as he safely could (I still have about 50% of it left in my noggin. If he had taken any more, he would have left me permanently impaired mobility-wise. That's why the emphasis of this recent surgery was about taking what we safely could), I wish he could have also magically removed the word "should" from my brain and vocabulary.

"I should be able to do this..."

"I should be able to figure this out..."

"I should be more capable than this..."

"I should be able to lift my arm...."

"I should be able to do this exercise..."

That word and my expectations are my worst enemies right now.

And maybe some of it has to do with the fact that there are a good many things in my life that have come naturally to me, broadly speaking. School, college, and grad school were never particularly difficult, except for AP Calc and chemistry. Those were total mysteries to me.

But all of that has changed. I'm not saying that as a declaration of woe is me, and I'm not looking for your pity, but rather as an observation that everything that was once easy now feels impossibly difficult. There's a massive gap between my expectations and reality. I keep expecting everything to be easier, which is ironically just making everything harder. Who knew trying to rotate a ONE pound dumbbell at the wrist could cause so much angst? I should be able to do this, I tell myself in the moment.

I think we do the same in our relationship with God, thinking that one day it's going to magically get easier.

I should read my Bible.

I should pray more often.

I should be more grateful and joyful.

News flash: It's never going to get easier. And I'm saying that to myself as much as I am to those of you reading this.

I don't think the solution is found in just trying harder and heaping condemnation on ourselves. I've spent my whole life trying harder and have mastered the art of self-condemnation (as my boss kindly told me the other day when I was stressing about some work stuff, "Court, you've already fired yourself like eight times from this job. Cut yourself some slack."), and here I am, still stuck in this vicious web of shoulds and expectations. My approach clearly isn't working.

So, as much as I may have an inkling as to what the solution is not, I certainly don't have a good grip on what the solution is when it comes to letting go of our expectations about how hard or easy life is going to be. That's why I'm struggling so much as of late because I can't figure out fully how to shake loose of the word should and walk in freedom from my own expectations. Sorry, if you were looking for a mic drop there and a heavy dose of wisdom. I got nothing other than a running commentary on my own state of affairs. All I have is a plea and a prayer to God for his help:

God, help me to see myself as you do. Help me to walk in freedom from my own unreasonable expectations of my brain and body at present. You said your yoke is easy and your burden is light, which clearly means I'm carrying around a yoke that isn't of you because this one I'm lugging around is heavy and hard. Show me how to lay it down at your feet and rightly place my expectations of this life. Amen.

_________________

Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

As noted in my previous post, I have exceptional friends. I got a package in the mail on Friday from my college friend, Stephanie. Inside was a signed copy of Kate Bowler's book Everything Happens for a Reason. 🤯 Stephanie's husband works at Duke, which is where Kate also happens to be a professor. He hunted her down and had her personally sign a copy of her book for me. 😍 

I have a laundry list of appointments this week. I feel like that's all do anymore is go to medical appointments. I meet with my oncologist's nurse on Monday to chat about the basics of chemo and radiation, then I'm meeting with a counselor, dietitian, and acupuncturist, all on top of standard rehab appointments. I'm trying to get all of these auxiliary supports in place before I start chemo and radiation, so that I'm as mentally and physically ready for treatment as I can be. The timeline for those treatments will be determined later this month once I have another follow-up with the oncologist. I also have to choose between one of two chemo drugs being offered. #Adulting

Continued prayers for mental stability, restoration of strength and coordination in my left arm, and stamina and motivation to get through all of the upcoming appointments, conversations, and decisions.

I Miss My Friend

I have an exceptionally amazing group of friends, as previously documented. This sucky season of life has proven that. Countless cards, gifts, flowers, and texts have been pouring in these last 3 months since my diagnosis. I won't make it through to the other side of this season of life without you all. I will not be the person you once knew. Suffering and hardship inevitably change a person, but don't give up on me. Don't leave me in the shadows all alone. Be willing to sit with me in my grief and sadness, even if you don't know what to say or do. I probably don't know myself.

But there's one friend in particular, though, that I am profoundly missing. Oh, how I wish I could talk to him, now more than ever. There's so much I want to chat with him about. I want to talk about expectations and limitations, joy and sorrow, Jesus and truth, fear and anxiety.

His name was Jonathan Eades. Some of you reading this knew Jon or know his parents, who are equally precious to me. 

We first met after I graduated from college. I started attending a new-to-me church in the area at the time, and then joined a small group that met at his house. Jon was diagnosed with Duchenne Muscular Dystrophy when he was five, and by the time I met him in his mid-twenties, he was permanently in a wheelchair. Somehow over the course of time, we fell into this habit of me spending every Thursday evening taking up residence on his couch, the two of us watching episodes of Big Bang Theory and Wipeout.

Jonathan eventually passed in February 2012. To this day, I still have reminders in my phone to mark his birthday and the anniversary of his passing. His parents remain two of my most favorite human beings on the planet.

I know I'll see Jon again someday in heaven, but I selfishly wish he were here now to help me navigate this season of life. He had so much wisdom and perspective to offer on life, born from his own experiences and adversity.

Jon, I hope I have half as much joy you did while traversing the valley, and I hope I shine the light of Christ half as well as you did. Like a sunflower follows the sun, I want to follow you as you followed the Son.

I miss you, my friend.

_________________

Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I'm still doing rehab multiple times per week, which has been going okay. I get very anxious about going because I keep anticipating being confronted by all that I seemingly can't do, but the occupational therapist made a good point - I have to stop comparing the present me to the former me, the former me that could do single leg squats with perfect balance and read 100 pages of a book per hour and had no problems with cognition. That person no longer exists. So, comparing my present self to my past self is a trap. "Comparison is the thief of happiness," he said. I have to figure out how to let go of what once was. No small task.

I connected today with a local cancer community support network that offers counseling and assorted educational offerings. I know I need counseling, especially heading into chemo and radiation. It's been tough mentally to stay between the ditches, with anxiety and fear sometimes rushing in like a landslide at times. I have to do double-time to not get swept away.

I'm at the start of week two for my medication transition, from a previous anti-seizure med to a new one. The old one had the side effect of depression, which I felt keenly. I am hoping the new one will go a long way in lifting the veil.

Some of you have asked about prayer requests. I’ll share with you the list of things that I’ve been praying for myself. I welcome your fellow intercession:

1. I’ve been praying shamelessly praying some versus straight out of Job, particularly Job 42:12: 

The Lord blessed the latter part of Job’s life more than the former part. He had fourteen thousand sheep, six thousand camels, a thousand yoke of oxen and a thousand donkeys.

Emphasis obviously being on the first sentence. I’m asking that the Lord would bless the latter half of my life more than the former half. I turn 40 this October, so it seems like an appropriate prayer, given that I’m supposedly reaching the halfway point of my life. I don’t know that I need the 14,000 sheep, 6,000 camels, 1,000 yoke of oxen, or 1,000 donkeys, but I am shamelessly asking for God's blessing on my future.  
 

2. I’m also praying that I would not be overcome by darkness. John 1:5 talks about this:

The light shines in the darkness, and the darkness has not overcome it. 

I’m praying that God‘s light would shine into the dark nooks and crannies of my heart and mind, and that I would not be overcome by that darkness, especially in the weeks and months ahead.

 3. I’m also praying that God would fully restore strength, coordination, and motor control to my left arm. It continues to be a source of frustration for me, and I’m having to figure out how to manage expectations, and not get so easily disheartened. 

4. I'm also praying that I would not lose heart in general. Sometimes my worst fear in the midst of this trial is that my faith would fail, or that I would turn my back on God. I start to spiral and imagine all the ways that things could go wrong, one of which is that I would abandon my faith, but then I’m reminded of this quote from JI Packer:

I need not torment myself with the fear that my faith may fail; as grace led me to faith in the first place, so grace will keep me believing to the end.  Faith, both in its origin and continuance, is a gift of grace. 

5. I also pray that I would have eyes to see God’s fingerprints in my life, that I would keep looking for the ways progress is happening, and eyes to see how he is working things for my good (My new favorite song on the matter), rather than dwelling on all the ways I feel like my body still isn’t functioning like I think it should. I pray that he would provide tangible progress that would serve as encouragement and motivation to keep going.

6. I'm praying for quality sleep and good rest. I tossed and turned last night, and could not get comfortable so I just kept thrashing around. 

The Suffering Olympics

Sigh. Back in the day when I had a full head of hair. 
I sound like an old man, don't I?

The weekend before my surgery, my precious friend Emily drove in 2.5 hours from Indianapolis to come spend the day with me. Emily and I've known each other for well over 20 years, having first met as freshmen in college. Emily is the kind of friend you want in the trenches with you when life falls apart. And my life has certainly fallen apart in the last 3 months, but this is not our first rodeo together. We have already weathered assorted trenches together in 20+ years. She's who I want next to me when the bottom drops out.

So, what does one do when your best friend comes to the bustling metropolis of Columbus, Ohio? You go to the cement cornfield. Obviously. I mean, who doesn't want to experience this artistic ode to corn in all its cement glory?  Being the good friend that she is, off we went to stand in awe and wonder at all 109 ears of cement corn. We then eventually headed off to grab dinner at one of my favorite places to eat, Rebol. While chatting over dinner, I explained to her how I had noticed a subtle shift in conversations with friends, a certain kind of withholding on their part. Some would start to say something about some sort of frustration or pain in their own life, but then apologize and say, "Sorry, I'm complaining, but I know it's nothing compared to what you're going through." It always made me sad, watching this self-censuring in action.

Emily immediately started laughing, somewhat incredulously, and uttered something that I thought was so profound and has lingered in my head ever since. "This is not the suffering Olympics here, people," she said.

Which is to say no one is handing out gold medals to those who are experiencing the worst life has to offer, including me. Whatever you're experiencing is valid in and of itself, and not because it may or may not pale in comparison to the perceived severity of my own experience. No one gets to stand on a podium at the end of this thing called life and raise a fist in victory at having the suckiest life out of everyone they know. If that's the case, then Jesus is the only one left standing on the podium at the end of it all, and instead of a gold medal, he's getting a crown. 

And yet, that's how we subconsciously move through life, comparing our own pain and suffering to those around us. That can have value at times because it grants us perspective, but when we are always looking through that lens, it becomes counterproductive because we start to decide that if we can't share our pain because it's not as bad as someone else's then that also means we need to start opting out of sharing our joy. If you opt out of one, then you need to opt out of both. Which just leaves you locked in silence because most of life is marked by one of those two things.

Yes, my life super sucks right now on so many levels, but there will always be someone who has it better, and someone who has it worse. I came across this quote shortly before all this mayhem started, and I think it offers up a good reminder:

“I am washing my face before bed while a country is on fire. It feels dumb to wash my face, and dumb not to. It has never been this way, and it has always been this way. Someone has always clinked a cocktail glass in one hemisphere as someone loses a home in another while someone falls in love in the same apartment building where someone grieves. The fact that suffering, mundanity, and beauty coincide is unbearable and remarkable.” - Mari Andrew

This is both an unbearable and remarkable life, but what it most certainly is not is the suffering Olympics. That's a gold medal nobody wants to win. Trust me. 

So, to my friends: don't withhold from me whatever pain or frustration you may be experiencing, no matter how seemingly mundane. It still matters. My pain doesn't nullify yours. My current version of suckiness doesn't invalidate yours. And don't withhold your joy either.

_________________

Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I’m seemingly no longer having the episodes that I had last week, thankfully. I did have a follow-up appointment with my neuro-oncologist earlier this week, and he’s going to put me on a different seizure medication because he thinks my original one was causing a depression as a side effect, which I would agree with. Last week felt like such a black hole mentally. I really struggled to keep everything on the rails. So for the moment, I’m transitioning from one medication to the other, which is going to be about a three week process to wean off one and load up on the other. 

I started rehab last week, which has been okay. It includes occupational therapy, physical therapy, and speech therapy. I have it a couple times a week, typically all in one visit, with back-to-back 45 minute visits per provider. It makes for a long day on those days.

I also got my staples out, which feels good to have those gone.The other good thing is is that it appears as though I won’t need the second surgery, thankfully. I was not a fan at all of the idea the awake craniotomy, but the surgeon thinks it’s not warranted because of the success he had with the first surgery, and because we would face even more risk that we would do permanent damage to my motor control. So, the next step is to finish rehab, which goes until the end of June, and simultaneously we'll also start mapping out chemo and radiation plans. I told the oncologist, though, that I would like to summit Everest and return to basecamp before I have to turn around and summit Everest again. I want to get through rehab and give my body as much time as possible to rebound before I have to trudge back up the mountain. One thing at a time. One day at a time. keep the prayers coming. My left arm is still getting a one-star Yelp review.