Haunted by a Question

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

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

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

Me? [insert awkwardly long blank stare.]

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

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

Crickets every time for me.

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

An early prototype

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

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

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

I want to celebrate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

•  
•  
•  
• 
  

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

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Health Update

The self-advocacy victory pose.

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

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

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

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

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

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Bonus!

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