- Cycle 1: "Cycle 12 is sooooo far away."
- Cycle 4: "Yuck."
- Cycle 6: "Halfway there!"
- Cycle 8: "Absolute misery. Good Lord Almighty have mercy."
- Cycle 9: "Best one yet. Only three more to go!"
"There's a trick to the graceful exit...We own what we learned back there. The experiences and the growth are grafted onto our lives. And when we exit, we can take ourselves along — quite gracefully."
6.03.2025
General Update: Into the Homestretch
5.17.2025
Mementos and Memories
I'm not much of a collector, at least not in terms of material possessions. I had a friend tell me once that if people were to break into my place to rob it, they'd think someone had beat them to the job. Mind you, at the time he said this, I had gone from living in a 350 sq. ft. studio apartment to roughly a 1,200 sq. ft. condo. My parents thought I had been living in a shoebox in the first instance, and I thought I was living in a mansion in the second. I basically had no furnishings when I moved into the condo because of the shoebox I had come from. I slept with my mattress on the floor for I don't know how many months until I finally bought a bedroom suite, and I borrowed a couple of folding chairs from my parents for a number of months, too, while I sorted out what to do about kitchen furniture.
It's not that I didn't want to spend the money or anything. I just simply didn't care. Dealing with that version of adulting is a little soul-sucking and requires a lot of energy for me. I rather dread shopping and browsing around to find a good deal or looking through styles. Things like Pinterest and Etsy make my eyes glaze over, or at the very least make me feel very overwhelmed. It took me seven months to work up the energy to finally buy a couch when I first moved into the condo. Even in my current house, which I bought three years ago, I just now bought a combo bookcase/filing cabinet for files I've been carting around in a copy paper box for probably four years and books I've had stacked up on the floor for at least a year.
About the closest I have come to collecting material things are smashed pennies and ticket stubs. Both are compact, easily portable, and the items themselves clearly mark a moment or location, as there is identifying information inherent in their nature. Meaning when you look at any one of my ticket stubs you can clearly see things like a date, time, or location. Also, in the scrapbook in which I keep them (where they are all in order by day, month, and year), I typically write off to the side who I was with when I experienced the event. I have nearly every ticket from any sort of concert, recital, movie, etc. I've been to since 1998. Yes, you read that right. 1-9-9-8. If someone really wanted to, they could probably cobble together a narrative timeline of my life just based on that ticket scrapbook alone.
And the smashed pennies? That collection was inadvertently started by my grandparents. For as long as I could remember, they had this sort of 'junk pile' in the middle of their kitchen table filled with knick knacks, mail, an assortment of pens, a napkin holder, and usually a half-empty sleeve of Saltine crackers my grandfather snacked on along with peanut butter, and then a scattering of crumbs around it from Sunday family gatherings. My vague memory tells me this is where I found my first smashed penny somewhere loose in this pile of 'junk.'
It's from a trip my grandparents took ultimately to Australia, but with a stop along the way in Hawaii. They had occasion to visit Pearl Harbor, and the pressed penny from the visit shows an image of the USS Arizona Memorial. They picked up that little coin in 1978, not knowing they'd have a granddaughter someday who would have over 150 similar coins, marking her own travels, from coast to coast and even ones from Russia and New Zealand.*
Then 2024 hit, the 'year of cancer,' as I sometimes call it. Obviously there was - and is - so much more to last year than merely cancer, but it nevertheless is the defining marker. I acquired precisely two ticket stubs and zero smashed pennies last year.
However, as last year passed, I unintentionally found myself setting aside little trinkets, little mementos, to mark various moments and memories. A single staple from my brain biopsy (weird, I know). A golf ball I found on one of my morning walks when I was still living at my parents'. There's a story behind that golf ball which I won't get into right now in the interest of time and space. It’s nothing dramatic, but it’s of value to my family. Some of my favorite cards and letters friends sent to me that carried me through hard days. Some of the papers of brain exercises I had to do in rehab. My wristband from the first day of being admitted to the hospital, and I was told I had a large mass on my brain.
For every tangible item, there are also some intangible items I collected via photographs. I took photos of odd details in my physical surroundings at the time and recently printed a stack to add to my growing collection of tangible items. There's a photo of the light fixture in the room I stayed while at my parents', taken from the angle of how I saw it while lying in bed. I stared at that light fixture for what seemed like hours some days, usually seeing it through tears, wondering how life had taken such a hard left. There's also a photo of this rather large, old osage orange tree at the side of their property, a photo I took on one of my early morning walks when I had a ton of energy from the steroids during radiation. The sunlight is streaming perfectly through the branches and you can see just this wisp of a sunbeam reaching down from its branches.
Memories marked by mementos, a little collection that has grown over the last fifteen months and continues to do so, all tucked into a wooden box, which is part of the collection itself, as it was part of a care package. There are a good deal of moments and memories from last year I'd like to forget. The moment when my dad had to shave my head. The moment when I kept staring at the grid sheet in speech therapy and could not figure out how to solve the task, no matter how hard my brain tried to sort it out. The moments when I couldn't type or get my left hand to work. Every moment of every seizure. The moment when the occupational therapist came into my hospital room and asked me to simply raise my left hand at the wrist and nothing happened. The moment when I texted my friend and told her I didn't know how I was going to make it.
All those tangible items are tucked away in that wooden box, but the box is nearly full and I'll need to upgrade to another size. Because I know the story isn't over and there are moments yet to come that I will want to add to the collection.
And if my 'keep making plans' healthcare system has anything to say about it all, someday I will add more ticket stubs and more smashed pennies to my collections. I look forward to those days.
*And no, please do not make or send me any smashed pennies when you see a machine. I have a small handful from locations I haven't been to that friends have given to me over the years, but I generally prefer to have them from places I personally have been to.
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Health Updates
There was a moment in this latest chemo cycle when I had to pick up the bottle the meds came in to make sure I was shipped and taking the right drugs, I was feeling that amazing. This was BY FAR the best cycle I've had, at least as far as my memory can recall (they all start to run together after awhile). It was like the good Lord himself reached down and flipped a switch. After cycle number eight was so miserable, I really was bracing for number nine. At my last neuro-onc appointment, we decided to lower the dose of chemo this month, see if that helped things. I think that change and several other changes resulted in the improvements. I ended up having minimal nausea and no vomiting. My appetite was normal and I had no problems drinking fluids. I maybe napped a little more, but by and large, had really good energy. It really was stunning how well I felt. I rebounded days sooner than I normally do. You better believe I spent a lot of time thanking God for his kindness.
I'm still savoring the changes the new anti-seizure medication have induced, continuing to improve my ability to function and move through the day. Just doing common, ordinary things, like being able to schedule appointments and run errands in the mornings while also gaining evening hours, too, makes me feel like I have discovered a whole new world.
My next scan is June 3 to assess again what the tumor looks like. After that, I will start cycle ten, which means I only have three more cycles to go. If the schedule plays out as intended, I should start the last cycle sometime in August and then actually finish in September.
Definitely keep praying that my body would tolerate the drugs with no side effects and that the next scan would show that the tumor has shrunk (I'll also go for vanished!).
Again, thank you to everyone who continually reaches out and checks on me. I'm still so grateful for the intentionality of each of those gestures.
5.06.2025
My Dear Betsy
5.01.2025
General Update: What Does One Do With Curls?
My body went and made a liar out of me. In my last update on April 13, I said, "I started round number eight of chemo this past week, and yesterday was the last dose. I had far less nausea this time, having implemented some changes in how to handle it. I haven't been as miserable as the last two cycles have been, but I'm still not out of the clear just yet. I usually give it another 5-7 days after the last dose before I really come up for air."
I made it sound like it wasn't that bad, but the key word there was yet.
Judas Priest and a popsicle stick.
That little window of "5-7 days after" was by far the worst days I've had during chemo yet. I felt absolutely awful. I had vision problems, was sick to my stomach multiple times, had terrible, terrible nausea, and slept a lot. I think I just left the curtains pulled most of the time, living like Isaiah 9:2 conveys, a person 'walking in the land of darkness.' Only I had not yet seen a 'great light,' so to speak. I rotated between the recliner, the couch, and the bed.
I met with the neuro onc earlier this week and after I explained how bad this round was, he said I had two options: One, I could take a week break before this next cycle, or two, I could forge ahead with the next round but at a slightly lower dose. I opted for option two. I had already mapped out my month around chemo starting at a certain time, and I didn't want to derail that. So, I'll start round number nine (only three more after this!) next week, and I am praying that it is not as bad as this last one.
Despite my chemo misery, perhaps my 'great light' in all this is my new anti-seizure medication. What a game-changer. All that lobbying and pressing to get it have paid off in spades. I made some rough calculations and based on the hours I've gained back from my morning snoozes and the evening hours of not going to bed so early, I now have an additional twenty hours in my week. TWENTY HOURS. 2-0. Twenty. It is wild to me what a significant difference it has made in my life to not get so drowsy every time I took my medication in the mornings and evenings. I'm feeling like Princess Jasmine in Aladdin, a whole new world has arrived on my doorstep minus the magic carpet and a handsome fella, unfortunately.
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| Thanks, radiation and chemo. |
And now, I get out of the shower, look in the mirror, and think to myself every day, "What is this mess? And what does one do with it?" I still haven't fully decided what long-term look I am aiming for, but these curls may dictate a lot.
Generally speaking, the good days are really good, and the bad days are really bad. On the good days, I have lots of energy, I'm productive, I eat well, I'm connecting with friends and family, and generally going about life like normal.
But those bad days are really bad. I go into hibernation mode and don't want to surface for a long time. I struggle to eat, it's tough to drink water because even that makes me want to gag, and would prefer to fall off the face of the earth for that stretch of time.
I'm praying this lower dose will help the cause. Thanks to everyone who continues to keep in touch and doesn't take offense when it takes me a chunk of time to respond to texts or calls. It's definitely challenging trying to figure out how to pace my time in the good days between cycles. My month basically gets shrunk from 30 days to 20 days and I think the last couple of cycles, I've overcommitted on those good days in between. Regardless, I'm so grateful for everyone's continued support and prayers, good days and bad.
4.18.2025
The Thief of Pain
This time one year ago ushered in some of the very darkest, most miserable days of my life.
Grief, loss, and pain were consuming thoughts.
I just wanted it all to go away, telling myself it must be some sort of bad dream.
Ultimately, all I did was think about myself for days on end.
I forgot that a world around me existed or that anyone else around me might be in worse shape. I did nothing but live in my own little bubble, inside my own little head, unable to see past the end of my own nose and the yawning vortex stretched out before me that had become my life practically overnight.
Even in the face of his impending mortal death, even in his deepest moment of torture and agony, Jesus still noticed the thief next to him.
Consider this: Think about the worst pain you ever have been in - mentally, emotionally, or physically. Now multiply that times a hundred. My guess is you didn't care about the rest of the world at that moment.
But then there's Jesus.
One of the criminals who hung there hurled insults at [Jesus]: "Aren't you the Christ? Save yourself and us!" But the other criminal rebuked him. "Don't you fear God," he said, "since you are under the same sentence? We are punished justly, for we are getting what our deeds deserve. But this man has done nothing wrong."
Then he said, "Jesus, remember me when you come into your kingdom."
Jesus answered him, "I tell you the truth, today you will be with me in paradise."Here's what I find so startling in that moment:
In that moment, when in his humanity he could have easily ignored either man hanging beside him, when he could have easily said, "Just get me off this cross and make it all go away," he turns to the thief and says, "I notice you. This is the very reason why I came - was to notice you. You are not forgotten. And today you will be with me in paradise."
How many moments have I missed along the way in the midst of all this pain? How often have I let it eclipse all thought of others around me and their own sorrowing and suffering, or even their joy and gladness? Here in this season of Lent and Passover, here in this season of giving up in order to gain, here in this season of turning our eyes to the cross - how often did I miss the person next to me?
Jesus knew even on the cross, even in his worst pain, that the pain he was enduring was never about him.
It was about the thief next to him.
And the miracle of miracles is that Jesus still notices the thief and the criminal in me today, the girl who wants to rob the world in order to escape her own pain, the girl who is far too often so very self-absorbed.
I want to be like Jesus.
4.13.2025
Haunted by a Question
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?”
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.
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| An early prototype |
- 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
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.
- 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.
Health Update
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| The self-advocacy victory pose. |
3.25.2025
General Update: Welcome to Medical Scranton
3.22.2025
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? |
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.
Dorian spoke, "As I've discovered, Caro, if you look back on your life, you'll see His hand in it, and over you. You'll begin to see with new eyes all the times that were subtle as well as flagrant opportunities to know Him."
"True, and yet why did not come to know Him until this year?" I asked.
"Only God knows," Dorian chuckled. "But maybe that's not the question. Maybe the real question at stake is, why did he keep trying?"
In other words, why did God keep reaching for her, or for any of us, for that matter? Poet Francis Thompson does not call God "the Hound of Heaven" for nothing, does he? No, for God is a pursuing God, a relentless God who deeply desires for people to come to know him, and not just know him, but to know him personally, even though in part on this side of heaven, but then to fully know him once in heaven with him.
In the book of Acts, the apostle Paul proclaims to a crowd gathered in the Aeropagus, which was a gathering place in the ancient Greek city of Athens for all the thinkers and philosophers, answering in some ways the question Dorian posed to Carolyn:
The God who made the world and everything in it is the Lord of heaven and earth and does not live in temples built by human hands. And he is not served by human hands, as if he needed anything. Rather, he himself gives everyone life and breath and everything else. From one man he made all the nations, that they should inhabit the whole earth; and he marked out their appointed times in history and the boundaries of their lands. God did this so that they would seek him and perhaps reach out for him and find him, though he is not far from any one of us (Acts 17:24-27).
Why did God uniquely set each person in a unique century, in a unique year, on a unique continent, in a unique area, and in a unique city? He did that so that unique individual would have the optimal environment for seeking and reaching out to God. And not just to seek and reach for him, but to also find him. My existence as someone born specifically in the twentieth century, in a specific year, on a specific day, in a specific country, in a specific state, and in specific city, was so that I would have optimal opportunity to seek him, reach for him, and find him, even though he wasn't going to be far from me anyway. I am where I am, and you are where you are, so that we will reach for God and find him.
God desires to be found. And he's willing to go to great lengths to make that happen.
And in our reaching, we will find that he has been reaching back for us all along, just like Dorian told Carolyn. The real question at stake isn't why did it take us so long to reach for him, but rather why did he not relent in reaching for us?
When Jesus hung on the cross, his arms were stretched likely to his full wingspan, but I can assure you, in that moment, his reach was far greater than the mere width of that crossbeam, the mere width from his left fingertip to his right fingertip. Both in that moment and to this day, the cross was a display for all to see, that he and his Father were reaching for every lost and broken soul that has ever lived. The reach of the cross was not the length of a wooden crossbeam; it was the length of all eternity, across all locations, across all languages.
Maybe you've been reaching for him, maybe you haven't. The question at stake is, why is he continuously reaching for you? He’s reaching for you, whether you acknowledge it or are aware of it or not.
That is no small love reaching for me, reaching for you.
I have not spoken in secret, from somewhere in a land of darkness;
I have not said to Jacob’s descendants, ‘Seek me in vain.’
I, the Lord, speak the truth; I declare what is right (Isaiah 45:19).
When we reach for him, for his beauty, his truth, his righteousness, his holiness, his glory, our seeking will not be in vain.
May we all reach for Jesus even as we're reaching for whatever balloons we may be longing for. Perhaps we'll find him at the end of our balloon strings, waiting, reaching back.
____________________________
Health Update
Whew. The past couple weeks have been a bit bumpy, both in side effects and in stress levels. I started cycle number seven, which means I would have been actively taking the chemotherapy March 11 through March 15. By the time March 13 rolled around, it was heading down hill. The nausea just gets atrocious, even with anti-nausea meds. Definitely threw up dinner one night. Couple other false alarms of wanting to get sick to my stomach and would just sit on the bathroom floor, waiting, and then nothing would ever happen.
When it gets that bad, the hardest part is drinking and eating. Even water is disgusting to me at that time, which means I'm usually not getting enough fluids in me. Fruit juices seem to help the cause, although still not nearly the volume I would need to with water. It's also really hard to down my meds because I just want to gag all the time. I joked with my boss I was going to have to start playing the Chicago Bulls theme song, or some such hype music to get through my evening meds. (Feel free to post tips or other songs/hype music suggestions in the comments of how I can down meds when all I want to do is throw up.) Of course, nothing ever sounds good to eat. I'm supposed to eat a 'well-balanced diet,' but when you're that miserable, eating kale or broccoli isn't exactly on the list of things that sounds appealing.
Eventually I made it through to the other side and feel much better now. It's usually somewhere around Day 10 that I feel like a new person, and can function properly. Hopefully it's smooth sailing from here until the next round, which should be around April 7. However, this latest blood work showed that my white blood cells were the lowest they've ever been, so I was actually surprised when we moved forward without delay. It was mentioned that maybe we lower the dose in future cycles so that the blood counts don't take such a beating. I have my next follow-up with my neuro-onc on April 3.
As far as stress levels, that is related solely to issues with trying to get my possible new seizure med sorted out. Ya know, I thought I had some gumption before, but I am finding a whole new reservoir of it that I didn't know I had in me. I've really had to check myself because if there had been a broom within reach for several days this week and last, I'm pretty sure I would have turned into the Wicked Witch of the West. Thank God for the restraint of the Holy Spirit because if it's possible to get fired as a patient, I'm pretty sure I would have been if I had done and said what I really wanted to. I've just repeatedly hit the same roadblock over and over again - and surprisingly it's not with my insurance company! They've been great. It's with my seizure doc's staff. Good Lord Almighty, help me. The issue still hasn't been resolved, but I am praying to God it is soon, and that in the meantime, I would not fester and stew over the matter, like I am prone to.
Would appreciate your prayers on patience and that the process would unfold smoothly moving forward so that I can try the new medication to see if it helps the drowsiness I experience as a side effect.
3.11.2025
General Update: Stars and Stripe Forever
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| The non-arched St. Louis Arch |





