Time, Please Don't Have Your Way

I stood at the kitchen sink the other day, holding a bowl in my left hand, a sponge in my right. I gripped the bowl in my left hand, my thumb on one side of the lip, my other fingers wrapped around the inside, turning it this way and that as I slathered it in soapy water. I marveled at this tiny, common miracle, and I wondered if I would ever get over the simple ability to hold a bowl with my left hand. Because at one time just a few short months ago I couldn't fathom the idea of ever doing something like that again. It seemed like an impossible goal. 

But there I was. 

Holding a bowl with my left hand. 

I was in awe. 

And then it was quickly followed by the thought, What will the moment look like when I no longer stand in wonder at such things? And I'm not trying to rain on my own parade here. I'm just all too aware of my humanity. I know how quick I am to move on with life. I know how ungrateful I can become, forgetting the struggle and the pain. Just months ago I was wishing this moment would come, when I had the strength to do the most basic of tasks. 

And here is that moment. It has come.

Now I can open a Ziplock baggie.

I can type. 

I can wash a bowl. 

And I've already forgotten how much pain it took to get to those things. I've already forgotten what it cost to be able to wash that bowl.

I pray to God I never go through another two months like the ones I did following the surgery in April. They hold so many painful memories.

But I fear nonetheless that time will have its way with me, dullness will settle in, and I will no longer marvel at the simple act of my left hand holding a slippery bowl. I fear I will take for granted the struggle I went through to do that. I fear the extraordinary will become once again ordinary. 

And maybe that's for the better? I'm not sure. Perhaps God knows we can't endure the intensity of the sun for an extended period of time anymore than we can endure the intensity of the storm for an extended period of time.

I am well aware of the contradiction with which I am praying - in that I both wanted time to have its way, and am now praying it wouldn't. 

I pray I would not grow dull to the pain and the cost of these last seven months.

And I pray I would not take for granted the beauty and wonder it is to have strength to stand at a sink and wash a bowl.

______________________________

Functional updates:

I started the first of 12, 28-day cycles of chemo earlier this month. Turns out it's a helluva a lot of work to stay alive and to stay healthy. 

Symptoms, for the most part, have been mild, nausea more than anything. But I tell you what, "chemo brain" is no joke. If my head weren't attached, I'd have left behind awhile ago. My job is highly detail-oriented, so I've had to do double-time to keep track of everything.

Motivation has been a major struggle these last few days. I've just felt like being a lazy bum and not getting out of bed.

I have my monthly check-up with my neuro-onc next Monday where we'll take stock of everything and assess next steps for the next 28-day cycle.

Prayer requests

• Energy and motivation to get through the day
• Minimal side effects
• Desire to exercise and keep my body moving
• Discipline to spend time reading the Bible

General Update

Note: If you haven't read the update at the bottom of the previous post, I encourage you to do so. It serves as a preface to this post and all other posts going forward.

Ah,  break. I'm sad you are coming to end. You were a much-needed timeout.

Break primarily consisted of working, writing, and itching. I worked, as this is heading into our busiest time of year, and I needed to make sure I was keeping up with everything and getting ahead where I could. The conference I help plan is in November, so between back-to-school and then, the pace just picks up with each passing week.

I wrote a new piece for Gospel-Centered Discipleship, also noted in my previous post. I spent a fair amount of time mentally piecing it together and dwelling on Deuteronomy 8 and Isaiah 43:18-19 before I formally started writing. I personally think it's one of the best pieces I've ever written, costly though it was.

I also spent part of break itching for a couple of weeks, enough so I left a smattering of bruises all over my body. As soon as I started tapering the steroid I was on, this crazy rash started, mainly on my head, face, and neck, then started working its way down my arms and torso. The neuro oncologist had no idea what was happening, so he sent me to a dermatologist (so much for not seeing any medical providers while on break). Thankfully, the dermatologist knew almost immediately what was happening as soon as I described symptoms: morbilliform drug reaction. His leading suspicion is that I had I drug-induced reaction to the antibiotic I was on during radiation. I have never itched so much in my life. I was losing sleep, I was itching so much. He prescribed another drug, a cream, which helped so much. I was almost completely itch-free within a week. Thus, the Great Itch of 2024. Let's hope that doesn't happen again.

But the biggest news of all is I had my first MRI while on break. I then met with the neuro oncologist and the radiation oncologist to review the results. The tumor has shrunk! The radiation oncologist said the results exceeded her expectations. I'm so grateful to God for his faithfulness. 

Up next: I restart chemo this coming Tuesday. I am entering the next phase of treatment, which will look very different from the first. From here, chemo will run on 28-day cycles. Of those 28 days, I will only take chemo on days 1-5. I then take nothing on days 6-28. I repeat this 28-day cycle 12 times. So, theoretically, I'm in treatment until next August, getting MRI scans every 3 months, doing blood work on a regular basis, and seeing my oncologist every month for the next 12 months.

Prayer requests:

• Side effects: Pray for minimal side effects. This round of chemo will start at the double the dose I was on initially, with the goal of getting to triple the dose down the line. We will assess each cycle, and the doctor will adjust the dose either up or down, depending on blood counts and side effects. I also need to be able to get my job done and I don't want side effects interfering with that to the point that I fall behind.

• Processing trauma: I can tell there is a lot of trauma-related memories and issues from the last 7 months that are starting to surface. The doctor cleared me to drive, and I immediately burst into tears at the prospect. It's been 7 months since I've been behind the wheel of a car, and I never had a seizure while driving, but the fear of having another seizure, let alone while driving, profoundly haunts me. While cleared, it may be a while before I voluntarily choose to drive.

• Discipline in physical rehab: I had what I think is my last occupational therapy session this past week. I need to continue to rehab my arm and shoulder, though, and my body overall, so that I can continue to regain strength and coordination on my left side. I think I'm getting to the place where I can start doing some basic workouts like I was used to doing at the gym, but I'm going to have to take things slow and start with bodyweight-only movements for now. I have an old herniated disc flaring up, so I'm trying to focus on keeping that from totally coming off the rails.

• Increased cognition: I can tell a decrease in my memory and recall. I have to be very quick to write things down as far as tasks I need to do, as I can't remember them even 10 seconds later. I mentioned this in one post awhile back - how do I tell the difference between brain cancer and just regular ol' aging? Welcome to brain cancer AND aging! This ought to be barrels of fun.

Thanks to the army of prayer warriors who have consistently gathered around me and interceded for me these last 7 months. I'm still standing because of you standing in the gap for me and because of a faithful, sovereign God. 💗💗💗

Remembering and Forgetting

Over the last few months I've had an assortment of conversations with a friend of mine, who has had health issues of her own, and we've been comparing notes (and not in a Suffering Olympics sort of comparison) about what we each remember or do not remember about our health experiences. "I remember this in pre-op, but not this..." "I can remember this appointment, but not this one..." 

And all that got me to thinking a lot about remembering and forgetting. I can tell a distinct difference in my short-term memory these days, like I escalated the aging process by about a decade or two. (Forty is the new sixty, anyone?) For example, I used to be able to quickly recall the names of actors, movie titles, and movie quotes, but that's more of a struggle these days. (Although, that's not really a useful life skill anyway, so does it really matter that I can't remember those things as well?) I also have to be very quick to write down anything on the to-do list before I forget it. Probably a lot of what I can't remember from recent months is from trauma, my brain's way of saying, "You didn't need to remember that anyway, so let me do you a favor."

As a result of those conversations with my friend and my own reflections, I wrote and published a new piece for Gospel-Centered Discipleship, which just released this morning. I normally post pieces to the blog before escalating to formal publication, but I just got the sense this one needed to move straight to publication, so I spent part of break writing it and then going over edits from the editor.

"What a Rare Brain Cancer is Teaching Me About the Art of Remembering and Forgetting"

I hope you find it of value. My prayer is still that God would help me to remember what needs to be remembered (maybe that means I still recall that Ethan Embry is TB Player in That Thing You Do! - and maybe not), and to forget what needs to be forgotten.

Feel free to post it to your socials or text it to a friend. Thanks for reading. 

______________________________

Functional updates:

I'll eventually post an entry dedicated solely to health updates (hi, Great Itch of 2024), but as a preface to that:

This break was much-needed in a way I didn't anticipate, offering a lot of margin and space to pause and hear myself think. The chief conclusion that rose to the top revolved around communication moving forward. This blog was essential in the early days and months of my diagnosis. My family and I needed to offload a lot of direct communication and this method met that need. I also wanted a forum to pour out all that was rolling around in my head. This has easily been the most prolific period of writing for me in well over a decade. 

Those were good and right things - at the time.

But the situation has evolved and my body isn't coming off the rails like it was in the first six months and the constant parade of thoughts has slowed (despite the lengthy note in my phone that says "future blog post ideas"). My family and I aren't white-knuckling our way through life as much as we were. Although, that's not to say we aren't as guarded, as we've seen first-hand how life can change in the blink of an eye. 

As time passed during break, when I thought about the prospect of posting again, it suddenly felt like such a chore to me, and I was suddenly feeling the weight of expectations from others, whether real or perceived. I told my mom, "I don't want to be both the breaking news and the reporter of the breaking news." Not anymore, at least. It never felt like a chore at the beginning, but like I said, time and space have finally given me enough room to hear myself think.

All that being said, you will notice a considerable difference in the frequency and substance of posting moving forward. 

Sometimes I might post just health updates. 

Sometimes I might post just reflective pieces. 

Sometimes I may post both. 

And sometimes I may go for stretches where I post neither (this is where it's your job to not panic just because I haven't said anything in awhile. Keep calm and carry on).

This isn't just about the next 12 months of treatment.

This is about the rest of my life.

I have to find a more sustainable pace and rhythm to all of this without making like a bear and hibernating from all humanity until further notice.

I've been so grateful for you who have been reading, keeping up with every post and every turn of events. You have been the encouragement to me in the chaos, and writing has been the light in the darkness. (Looking back, I literally don't know how I posted anything coherent those first two months after the surgery in April when I felt so wretched and everything felt like a big fat giant mess).

There's still a long road ahead and you'll no doubt hear from me eventually, but until next time, back to you, Bob, for the weather and traffic. 😉

Posting Hiatus

Welcome to break! my body and brain say. I already feel the relief of not having to go to radiation every day and take chemo every night. I can now eat dinner whenever I want! (I had to take chemo on an empty stomach, which meant I was eating dinner no later than a specific hour every night.) The wonder of tiny miracles, like eating whenever I want. Who knew.

In light of said break, I'm also going to take a break from posting. Unless there is some thought or idea that makes me think I'm going to spontaneously combust unless I get it out, I don't plan on posting again until after break, which means sometime around late August.

In the meantime, may the bears be with you.

Not Just the Days, But the Halves of Our Lives

"A surgeon and his scalpel left this scar down the right side of my head in April, a mark representing so much grief and loss, pain and sadness. And now radiation is finishing the job by causing everything else to fall out on that side. I'm asking you to be a surgeon of a different kind, using different tools to leave a mark that represents the exact opposite, to represent beauty and hope."

That's the speech I had mentally prepared to deliver to the barber yesterday.

Did I actually say that when the time came? Of course not. Instead, what came out as I pulled off my black beanie, "Well, as you might guess, we've got a bit of a cancer situation on our hands here."

Understatement of the year.

I did indeed find a barber who could shave artistic designs in hair. I tracked down Cyle, a barber at the Royal Rhino Club near downtown Columbus, per a recommendation of a staff member at the radiation oncology office. My philosophy in wanting to get some sort of design in my hair was, "When you're in so deep, you might as well keep going." There's nothing I can do about the scar or the hair loss due to radiation. It's spilled milk. So I might as well find some cereal and eat it off the table because that's the option I'm left with at this point.

But the more I reflected on the matter, the more the symbolic and defiant the act became in my mind. 

My hair is now quite literally split in two, with the right side reflecting all the chaos and pain of the last several months, and the left side now reflecting life and hope.

This, too, is how we live our lives, two opposite halves living side by side, often in one space simultaneously.

Joy and sorrow.

Mourning and rejoicing.

Pain and healing.

Tears and laughter.

Certainty and uncertainty.

Faith and doubt.

Rarely are we comfortable holding the two halves together separately, let alone at the same time. It is a very delicate balancing act to believe that we can both laugh and cry, for we feel like one is an insult to the other. If we find ourselves crying, then we feel like we do not have permission to laugh. I remember being at my grandfather's funeral, and my strongest memory of the time was how ridiculously hard I laughed, over and over again, as our family told stories. I almost felt guilty. You don't do such things at somber, morose occasions. But there we were. Tears streaming down our cheeks, our sides hurting, not from sadness, but from laughter. 

Two halves, all in one space together. 

And if we find ourselves doubting even one iota, we feel as though it utterly negates whatever faith we might have. 

To walk Planet Earth and to be human means we must live in these spaces where we mark not just the days of our lives, but the halves our lives. To be human means we have to figure out how to navigate the tension and the juxtaposition of such things.

To navigate them well, to hold the halves in our hands (or on our heads), is done best through the work of Jesus Christ. For those of us who are in Christ, we know him to be the one who makes all things whole and complete. He is the means, method, and end to our completion. 

All our joy is found in him. 
All our sorrow is redeemed by him. 
All our doubt is erased by him. 
All our faith is sustained by him. 
All our mourning is remade by him. 
All our rejoicing is initiated by him. 
All our certainty is anchored in him. 
All our uncertainty is transformed by him. 

As Colossians 1:16-20 declares:

For in him all things were created: things in heaven and on earth, visible and invisible, whether thrones or powers or rulers or authorities; all things have been created through him and for him. He is before all things, and in him all things hold together. And he is the head of the body, the church; he is the beginning and the firstborn from among the dead, so that in everything he might have the supremacy. For God was pleased to have all his fullness dwell in him,  and through him to reconcile to himself all things, whether things on earth or things in heaven, by making peace through his blood, shed on the cross.

The halves of our lives are made whole by a Savior who specializes in putting things back together, including a head like mine, marked by scars, chemo, and radiation. 

By faith, I'm believing I'll have a whole head of hair again some day. That faith is anchored in Jesus, and not a doctor or medication, though those things can be tools in his hands.

But for now, I'll bear the halves of scars and beauty at the same time. I'll trust that the God who makes all things new and counts every hair on my head, even the ones I've lost, will make the halves whole like only he can.

"Indeed, the very hairs of your head are all numbered. Don't be afraid; you are worth more than many sparrows" (Luke 12:7).

______________________________

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.

After the initial bumpiness of this week and the adjustments we made to the steroid, I started to feel back on track by Thursday. I had a check-in with the neuro-oncologist on Wednesday, and he said this first phase was really the hardest, and if I had weathered this stage well, then I should have minimal issues with the remaining cycles. (But let's remember, this is the very fickle human body we are dealing with, so let's take comments like that with a grain of salt.)

My last chemo pill (for now) is tonight! My last radiation treatment is this Wednesday. My last OT appointment was last Thursday. I still plan on doing home OT therapies, but no more formal appointments are scheduled for now. I know there's some areas I still need work on, like fine motor control and coordination in my left arm, and strength and coordination in my left leg, so I need to continue to capitalize on the brain's ability to rewire so that these things continue to improve.

I did a round of blood work last Friday. I will let my oncologist looking at them tomorrow to see what the results mean. I won't do anymore blood work until my first MRI scan on August 20.

Still no more seizures since May 30, which has me overwhelmed with gratitude. Dang, those suckers were so stressful. I still get anxious at times, especially if my leg even so much twitches. It immediately creates panic in me.

Things you can continue to pray about:

• protection of my immune system, especially if my blood counts drop.
• improvements in cognition, physical stamina, strength, and coordination
• discipline to maintain home exercises while on break
• protection of time during break, that it really would feel like a Sabbath rest of its own kind, that my body would heal and repair from this first round of treatment.
• sensitivity to the Holy Spirit and his voice

And bears! Don't forget about watching the fat bears at Katmai! If you have Peacock, apparently they did a mini-series on the bears called "The Hungry Games." 

Update on Life and the Joys of Fat Bears

Not to worry. I'm still here. I've had so many things rolling around in my head lately, but nothing seems to be percolating enough to merit a broader audience. I've learned not to pull the trigger too early when it comes to writing, otherwise it just ends up falling flat, so this post is going to be purely a functional update unto itself.

I met with the neurosurgeon last week for a routine 3-month (3 months!) post-op appointment, which actually ended up being somewhat teary, in a reflective, grateful, sort of way. I was recounting to him how much the two months immediately post-op thoroughly sucked and felt like a little slice of hell on earth. Remember the old antenna TVs that would get snowy-looking when you had bad reception with only occasional images coming in clear? That's how those two months feel to me. I have some memories, but they are hazy, filled with a lot of depression, grief, sadness, trauma, and frustration. I hope I never live through another two months like that again in my life. 

The surgeon, though, was pleased with how things had gone during the surgery in April, and how well I was doing at present. We brought it in for a group hug to end the appointment (my mom was also with me). I'm very grateful for that surgeon's work in my life and I'm glad he was part of my care team.

Chemo will end this Sunday, and radiation will end next Wednesday before my 30-day break begins. Never have I ever been more excited for a break in my life. Forget spring break. Forget summer break. Forget time off work. Life with cancer is when you get excited about a break from nightly pill-popping at 9:00 pm for 42 days straight, and daily trips to the hospital for radiation treatments that leave you bald, but just on one side of your head. #Adulting 

I know I joked about making plans in a prior post, but in this instance, I want there to be precisely NO plans during this break. I don't want to see a single medical provider for 30 days. I just want to stop and let my body regroup after the all-out assault these last 6 months have been. Just for kicks, I totaled up how many appointments I've had since the beginning of February when the bottom dropped out, including daily radiation, individual rehab appointments, lab work, and one-off appointments with doctors. It's in the vicinity of 90 appointments. Ninety!  👀

Physically, this week has been a bit bumpier than the others. I had been sailing through the first 5 weeks of treatment, and then a week or so ago, I started getting more frequent headaches. Then Monday of this week, I slept almost the entire day, which was an unusual amount of fatigue for me. I also had my first bout of nausea and vomiting yesterday morning, which was fairly mild, thankfully. This morning when I woke up, I was so weak, I thought I was going to topple over when I got out of bed. I texted my mom, just upstairs, instead of yelling for her, asking her if she could bring me all my morning meds because I genuinely did not think I could make it to the kitchen to get them myself. Mornings were my best hours there for awhile, but definitely not this week. The doctors said none of this is surprising to them, but rather to be expected as radiation comes to an end.

I had a virtual appointment with my neuro-oncologist today and he was pleased with how things were going. I'll have my first MRI on August 20, but the radiation oncologist warned not to put much stock in that particular scan, as it will serve as its own benchmark moving forward, rather than looking back to see how my tumor has responded from chemo and radiation.

Tomorrow is my last occupational therapy session, for now. Depending on how progress goes over break or if any setbacks, I asked them to just put me on hold rather than discharge me from rehab altogether.

And if no one has ever introduced you to the Brooks Falls bear cam, please allow me. They are far more exciting than my life with cancer. Instead of seeing doctors on a regular basis, this is what I'll spend my 30-day break doing - watching brown bears in Alaska gorge on an obscene amount of salmon as they fatten up for the winter. And if you really want to follow me down the rabbit trail, don't miss out on Fat Bear Week, usually in October. It's like March Madness, but for fat bears. #YoureWelcome #Enjoy #FatBearBreak

I Get You Now, Dolly Parton

About a month ago I nearly fell out of the shower. This would have been when I was still on the heels of four seizures in two weeks, so my balance was understandably not great. In that split second, I had a flash bulb moment and realized the name of the book I will never write: The Harrowing Tales of Brain Cancer: What They Don't Tell You in the ER, OR, or NCC. ("NCC" stands for the neuro critical care unit, which is where I have spent the bulk of my time when in the hospital.) I texted this to my friend and former coworker who has been on the receiving end of the anecdotes of my most undignified and ridiculous moments in the last 5 months, some of which I'll share below, and some of which I will never share because, quite frankly, it's TMI. Despite posting the ins and outs of my life for the past five months, even I have limits.

So, in honor of that flash bulb moment, below are some of the more comical behind the scenes moments to my life in the last five months, of which no one in the ER, OR, or NCC thought to warn me about:

• I now understand Dolly Parton. Since the 1980s, the woman has slept in a full face of makeup for fear of something happening in the night and she would be caught not looking like herself. I haven't been sleeping with a full face of makeup on since my diagnosis, but I have become slightly rabid about shaving my legs. I had a hole drilled in my head and 10 staples in February, and all I could think about was getting my hands on a razor to shave my legs. I've shaved my legs more frequently in recent months than I ever have before in my life for fear I'll wind up unexpectedly in the ER again with unshaven legs.
• A few weeks after my craniotomy in April, I noticed what appeared to be these dark mole-like marks along my incision. I went to my routine post-op appointment in May and inquired about it and the nurse very casually said, "Oh, those are probably your dissolvable sutures from your second layer of skin popping through your scalp." Come again? I have dissolvable stitches in my head? Apparently during a craniotomy, they cut your scalp and then a second layer of skin before they cut open the bone plate of your skull. Then they just put all those pieces back together in reverse order when they are done. That second layer of skin gets dissolvable stitches. So, as the top layer of scalp heals, it also starts to sink and settle, thus the dissolvable sutures start to poke through your scalp. Nothing to be alarmed about. Perfectly normally to have rubbery, fishing wire-like stubs poking through your head.
• There were two things I thought a lot about while in the hospital for the craniotomy: 1) the glory of God and 2) La-Z-Boy recliners. I won't get into the glory of God right now, but I thought about La-Z-Boy recliners a lot because for the life of me, I couldn't understand how healthcare systems had not formed some sort of exclusive partnership with the recliner company. Hospital recliners are the most ridiculously uncomfortable piece of furniture, even more so when one part of your body doesn't work properly. I was anticipating death by cancer, but not death by recliner. You have billions of dollars in profits and you can't afford semi-decent recliners that don't require an 80-point turn just to lay on your side?
• 
  The neurosurgeon did a great job of minimally cutting my hair after the biopsy. He did not do as good of a job on the craniotomy. I thought he was just going to shave the whole thing during surgery, and I did not have the emotional bandwidth to do it beforehand myself, so I went into surgery with a full head of hair. I came out of surgery with a partially full head of hair; one large swath on the left, a smaller swath on the right. This photo was shortly post-op. There's just no good way to rebound or salvage a haircut like this. (And ignore the giant plate of food. The hospital kitchen clearly misunderstood my order and thought I needed some extra meat on my bones.) 
• There was a super cute physical therapist while I was in the hospital who was a fraction of my age and probably still in college. Meanwhile I looked like a combination of Frankenstein and Donald Trump with a severe combover in one. My balance also still wasn't great at the time. I didn't stand a chance. Want to go for a drunken-like walk down the hallway while you hoist me up with a gait belt? 
• I'm like a two-year old when it comes to naps these days. My tell? My tongue starts tingling. No joke. That's how I know I'm tired. It doesn't go numb, it just tingles. I then have about a 20-minute window before I need to find a bed and pass out. That little habit has only started since I started taking chemo and radiation, though. So, it has to be related somehow to those two things.
• After the craniotomy, I had so many motor control issues, including my eyeballs. I couldn't figure out how to break eye contact with people and would just awkwardly stare. Even if just passing people by, particularly in the rehab waiting room, I would just stare and stare. So, I just got really good at studying ceiling tiles and dead spaces in rooms instead.
• Sleeping in the hospital is generally an elusive dream. And the one place you really need to sleep and recover? The NCC. But sleeping in the NCC is like a mirage in the middle of a sandstorm, trying to climb up a dune in the Kalahari desert. It's a figment of your imagination. I had two IVs, one arterial line, a drain coming out of my skull, a pulse oximeter, 5 heart monitor lines, a blood pressure cuff, two leg compression cuffs, and a catheter. Best of luck!
• If I didn’t have shoulder problems before, I do now. Because I've had so many problems with the left side of my body, I often drift to my left while walking. So, when passing through doorways, I was routinely taking out my left shoulder. My parents could always tell when I was coming and going out of one particular room in their house that has French doors because I would bump into the left door, rattling it. It was like bumper cars, but between my left shoulder and door frames. My eyebrows also are getting a hell of a workout these days. My brain seems to think they might help raise my arm, as I lift my eyebrows a lot when needing my left arm to do something. It's not actually effective, but my brain seems to think it might be beneficial. 🤷 Who am I to argue? I need all the help I can get.
• When I yawn now, my left arm levitates a few inches. I don’t understand the neurology of that, and I asked my occupational therapist and even he was like, "Yeah, that’s a new one for me.” I either hold it down or just let it do its magic carpet ride of levitating tricks.
• When starting chemo, the nurse practitioner emphasized multiple times the need to double flush the toilet when I'm done. My parents' toilet is getting more of a workout than my left arm. I'm always one to question the "why" behind things and I certainly am in this instance. I keep thinking to  myself, "It’s not a freaking bidet or lawn fountain. Is this really necessary?"
• I’m going bald, my eye prescription has changed, and I have to report bowel movements to my doctor on a regular basis (no pun intended). Is this brain cancer or just the realities of aging?  I have also joined the club of those who have to pee at some ungodly hour of the night, as I'm supposed to drink a gallon of water per day. I’m going to turn into a jellyfish by the time the next fourteen months are over.

And all those are just in the last five months. Who knows what other stories I'll have to tell by the time we get through the next fourteen months when my chemo cycles are theoretically done. There are likely more harrowing tales yet to come! Grab your bowl of popcorn!

______________________________

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 continue to make progress physically and cognitively every day. This is still the best I've felt since surgery in April. I'm walking for longer periods of time, I can hold social conversations for longer periods of time, and I'm gaining better motor control each day. I typed this entire post without using dictation or having to revert to using only one hand, which I think is a first?

I'm beyond grateful to God for how he has directly answered my prayers to be "radiant through radiation." I believe he has been faithful to answer that. I was out walking the other morning, and I pulled up the song "Goodness of God." I sang along with it and giant crocodile tears started pouring out. All my life he's been faithful, even now in these hard, sucky months. 

I still have 2 1/2 weeks of radiation left. I have almost entirely lost all the hair on the right side of my head where I have received radiation. I really want to find a barber who can shave in a super cool design on the left. If you know a barber or stylist who can shave art in hair, give me a shout. I figure if we're going to do this thing, we might as well be all guts and glory and just own it, give people something beautiful to look at it. 

I have a routine post-op with the neurosurgeon this week, which is the first I've seen him since April. I'll have a routine check-in with my oncologist the following week to touch base on how radiation and chemo are going.

Prayers continue to be that God would increase all things in my life -  increase motivation, energy, cognition, strength, faith, joy, compassion, patience, etc. I'm so grateful for the army of intercessors who stand behind me and have been joining me in these prayers.

To Whom Shall I Go?

This coming week will mark five months since my first seizure and the diagnosis. Without question, they have been the worst five months of my life. I remember texting my friend Kristina at one point early on, simply saying, "I keep thinking to myself I don't know how I'm going to make it." And at that point, everything felt like the Bermuda Triangle, where things mysteriously disappear but never come out, and all thoughts of the future felt unimaginably risky. They still do at times.

Have I questioned the existence of God in the last five months? You better believe it. Have I questioned his goodness, kindness, and mercy? Without a doubt. Have I wondered if what I have spent most of life believing was utter garbage, a figment of my imagination? One hundred percent. Suffering and hardship will make you question a lot in life, particularly about God and the role he plays in the universe.

I have on occasion looked back over posts I've written in these last five months and had to be honest with myself - Do I really believe what I've written or I am going through the motions, paying lip service to notions that I deep down doubt or just straight up don't believe? I think the greatest seasons of growth in my faith have been as a direct result of being confronted by my doubts and needing to wrestle down the answer to the question, "What do I really believe to be true about God and his character?" I wonder if we don't have faith without doubt, that somehow the two actually go hand-in-hand.

I was processing some of this early on with a counselor I was seeing at the time, and I told her, yes, I do believe all these things to be true about God. Yes, I still believe he's sovereign. Yes, I still believe he's good. Yes, I still believe he has good things for me, even though everything about my circumstances scream that I would be justified in believing otherwise. 

I told her, though, if not God then where else would I go? If not Jesus, then what other alternative would I turn to? Self-help? Worship of nature? Some other world religion? Atheism? 

She then reminded me of the words from John 6:60-69. Jesus is offering up teachings that are super offensive to those who claim to follow him, and they are having a hard time tracking with him. A lot start to abandon him and his teachings because he's so offensive to their way of thinking:

On hearing it, many of his disciples said, “This is a hard teaching. Who can accept it?”

Aware that his disciples were grumbling about this, Jesus said to them, “Does this offend you? Then what if you see the Son of Man ascend to where he was before! The Spirit gives life; the flesh counts for nothing. The words I have spoken to you—they are full of the Spirit and life. Yet there are some of you who do not believe.” For Jesus had known from the beginning which of them did not believe and who would betray him. He went on to say, “This is why I told you that no one can come to me unless the Father has enabled them.”

From this time many of his disciples turned back and no longer followed him.

“You do not want to leave too, do you?” Jesus asked the Twelve.

Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life. We have come to believe and to know that you are the Holy One of God.”

Here his followers are presented with a way out, if they so desired. Jesus had no problem with some of them walking away. He's not surprised by this turn of events. Jesus' teachings are not for the faint of heart. They are confusing. They are offensive. They are complicated. And Jesus knows this. He doesn't shy away from confronting his followers with offensive teachings and exposing their doubts front and center.

That's when he asks the twelve disciples, his closest friends, "You do not want to leave too, do you?"

Does what I have to say also offend you, you who are my closest companions, you who have given up everything to follow me, you who have forsaken family and fortune to commit your lives to follow me, do you also want to walk away now in the face of questions, doubts, and offensive teachings?

And then Peter answers with the gold standard response that has become my own conclusion in these last five months: "Lord, to whom shall we go? You have the words of eternal life. We have come to believe and to know that you are the Holy One of God."

To whom shall I go? If not God, then where else would I turn to and find that it holds the words of eternal life, that offers as complete of a worldview as what the God of the Bible has to offer? There's nothing out there greater than Jesus. Nothing. In 26 years of following Jesus, I have come to believe and know that he is the Holy One of God. 

Whatever doubts I might have or have had can only be settled in one place and by one person: Jesus Christ.  

He alone holds the words of eternal life.

______________________

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.

Welcome back, Sinead.

My hair started falling out Wednesday night from radiation. The doctor warned this would happen sometime in weeks 3-4. It's not straight up bald patches yet, but it's headed in that direction. Large chunks came out in the shower that night, and then I spent my Thursday morning walk pulling at it. By lunch on Thursday, I decided to shave it again. This haircut carried far less emotional angst than when I last did it in  the hospital after surgery. It's just a fact of life now. No use crying in my cornflakes about it all. 

I ended up conducting an accidental experiment yesterday. I usually hit a wall of fatigue sometime between 10:00 and 11:00 am every day, almost like clockwork. Yesterday was an exception since radiation had started, which was odd to me. I've also developed tremors in my left hand since radiation started. It only happens when I extend my fingers or type, so it's not spontaneous or persistent. But yesterday they seemed to get progressively worse through the day. I developed a headache yesterday evening, too, which I really haven't had at all through radiation. I had a growing list of unexpected symptoms all landing on one day, but why?

I go to eat breakfast this morning, pulling out all my morning meds. I have my seizure meds in their own separate daily am and pm containers. Surprise! I forgot to take yesterday morning's seizure meds! 🤦 Note to self: let's not do that again. 

Apart from yesterday's flub, I still generally feel good. I walked yesterday morning for 40 minutes, the longest I've walked so far. I watched an entire 2-hour movie without closing my eyes for an extended period of time. For months, I have struggled visually to sustain leaving my eyes open that long while watching TV, I think mainly from sensory issues and eye fatigue. I still can't get through a car ride without closing my eyes for a portion for similar reasons. It's not that I get motion sickness. It just seems like my eyes get twitchy and need a break. I now also have to wear eyeglasses all the time because my prescription has changed.

Still no seizures since May 30. I was talking with my parents the other night, reflecting on all the chaos these last five months have wrought, and I think the seizures are what carry the most trauma for me. They were so stressful because of their unpredictability and when I had four in two weeks, it was overload mentally and emotionally. I've been unbelievably grateful that God has strung together an entire month of no seizures. 

I've also been able to connect face-to-face with more friends here in the past week, which has felt like a breath of fresh air. It's much easier cognitively for me so sustain conversations these days, so it has felt good to catch up with friends. I still have limits and I do have to call an audible on occasion and vocalize when I reach a cognitive limit, but it's progress from even a month ago. The wonder that is the human brain's plasticity and ability to repair!

I'm still praying for an increase in energy, strength, coordination, motor control, motivation, joy, and peace. I had my first round of blood work at the end of last week, and everything was normal. I'm still praying my blood counts would defy expectations moving forward. 

I do want to clarify some points that have risen in assorted conversations lately. The words "cancer-free," "remission," and "no evidence of disease (NED)" will likely never be part of my vocabulary. I will always have some form of this cancer in my brain until the day I die. Our goal is to be "progression-free." Even the goal of radiation and chemo is not to "shrink" my tumor; it's merely stop it from progressing to a worse grade or growing in general. Shrinking it will be an added bonus if that happens.

Do I still pray that God would rid my body of this cancer? Absolutely. Do I believe he is able? Yes. Will he choose to do so? He alone knows. His answer may very well be no. But just as Shadrach, Meshach, and Abednego declared in Daniel 3:16-18:

Shadrach, Meshach and Abednego replied to him, “King Nebuchadnezzar, we do not need to defend ourselves before you in this matter. If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”

The Day When Everything Changed

Ah, the days of bangs,
gold-rimmed glasses, and clothes
that were way too big for me.
Alas, the hunched shoulders 
haven't changed much.

This coming Friday, June 28, will mark 26 years since my world forever changed. A decision that will quite literally echo into eternity. I even remember what I was wearing at that precise moment, right down to my tennis shoes. I had my then-long, blonde hair pulled back into a pony tail. I had on a red track shirt, a pair of black Umbro shorts, and a ratty pair of red and black Nike's that my mother not-so-secretly hoped would find their way into the nearest dumpster pronto. (I was notorious for wearing my shoes until I practically walked out of them.) There was a band playing that night called Delta Chi. I was 13 years old, a camper at a church camp tucked into the hills of Wilmington, Ohio.

And then Jesus entered the picture and everything changed.

I had grown up in church, hearing the gospel - the "good news" -  numerous times. The bad news was that man was sinful, in need of something outside of himself to redeem and restore him. The consequence for sin is unequivocal death, for all have sinned and fallen short of the glory of God (Romans 3:23). The "good news" was that God sent his son, Jesus Christ, to bring us from death to life. I knew that intellectually like I knew my times tables. 

But there was still a gap in my understanding. That truth had not traveled all the way to my heart. I remember a former pastor of mine saying, "The longest distance you'll ever travel is the 18 inches between your head and your heart." But that night, on June 28, 1998, I finally traveled that distance.

The teaching for the night was from 1 Corinthians 9:24-26:

Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever. Therefore I do not run like someone running aimlessly; I do not fight like a boxer beating the air.

There were 3 campers called up, each representing a different type of runner in the spiritual race Paul talks about here in Corinthians. One volunteer represented the person who was running the race, standing at the starting line, but hadn't actually begun running toward the finish line. Another volunteer represented the person who also was standing at the starting line, but so tied down with their baggage that they made no forward progress, tangled up and waylaid by their sin.

The third volunteer was running all out, heading straight for the finish line, loving Jesus wholeheartedly along the way.

I was the third volunteer.

In a moment of overwhelming conviction, I knew I was anything but the person I was supposed to represent. I identified far more with the other runners in the race. They probably should've had a fourth volunteer, someone who was running in the opposite direction. That would've been the best depiction of my spiritual state at the time. 

And ever since that trajectory-changing moment, I have kept running after him because he is the single greatest thing that has ever happened to me. How could you not chase after and pursue the one who has redeemed and restored all the broken parts of your heart and your life, and not just once, but again and again and again? How could you not love the only one who can reveal your sins and still leave you feeling loved? How could you not love the author of the word that is living and active, words that have the power to transform and change your very nature? How could you not chase after the one who makes all things new? How could you not chase after the one who is your living hope? How could you not chase after the one who promises life for all eternity? He is so precious to me, in a way that I can't fully articulate.

Jesus isn't merely some historical figure or some "good" man. 

He lived a perfect life and did what I could never do. I could never be my own savior. It would never be enough. No matter how hard I tried. He died a brutal, brutal death on a cross. He was placed in a tomb.  That tomb is now empty because he is now alive.

Until my dying day, I want it be said that I lived with Jesus as my one magnificent obsession, that I ran after Jesus wholeheartedly all the way to the finish line.  Will I run perfectly? Absolutely not. I am assured of my salvation and the fact that I will spend all eternity with him in heaven, yes, but I still live in a sin-soaked world and I am still very human.

The same question that was presented to me 26 years ago is the same question before you now: Which runner are you? And what will you do about that?

"Run in such a way as to get the prize." 

Jesus is that prize. He is what's waiting for you at the finish line.

______________________

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 cut up an orange! I walked for 30 minutes! I held a full Yeti tumbler with my left hand! I pulled the lever on the recliner back with my left hand! I opened a package of deli meat! And all by my big girl self! The left arm has moved up from a one-star Yelp review to a solid two-star. ⭐⭐

Since June 17, I've been keeping a notebook of symptoms, exercises, med changes, and improvements, no matter how big or small. And I am marveling at the gains I've been making daily, in awe of how God has been answering so many prayers. Heading into the start of chemo and radiation, I just keep imagining my life becoming a black hole of misery. O ye of little faith! These last two weeks (reminder: I started treatment on June 10, so I'm at the start of week 3), is by far the best I've felt since surgery in April. It almost feels ridiculous to me, looking back, how much things have shifted, especially through mid- and late May when I was repeatedly slammed by seizures (last one was May 30). Stress was through the roof and everything was an emotional cliff. I was on the phone with my HR in the midst, trying to figure out how to get on long-term disability but still carry my health insurance, but what I really wanted to do was to quit my job somehow because I just couldn't fathom how to keep going and juggling the never-ending stream of doc appointments and rehab on top of work.

Are there still days when I think Dang, I hate cancer? You better believe it. Do I think there are still hard days yet to come? Sure. 

But I also see God answering my prayers to be radiant through radiation and my prayers that he would increase my energy, motivation, stamina, coordination, strength, joy, and gratitude. There was the prayer to be like the burning bush in Exodus 3, though I be ablaze with drugs that I not be consumed by side effects. I am so unbelievably humbled and grateful by his workings. He brought to mind the verses from Daniel 9:18-19: 

We do not make requests of you because we are righteous, but because of your great mercy. Lord, listen! Lord, forgive! Lord, hear and act! For your sake, my God, do not delay, because your city and your people bear your Name.

I do not make these requests of him because of my own righteousness but because of his great mercy. For your sake, God, do not delay because I bear your Name. 

My new prayer, as odd as it may seem, is that God would make me like Secretariat, the legendary thoroughbred, when he ran the Belmont in 1973. Why not? I'm not going to have not because I asked not. If God is willing to send talking donkeys (see Numbers 22), fish with drachmas in their mouths (see Matthew 17), floating ax heads (see 2 Kings 6), and all other manner of strange phenomena to display his sovereignty over the natural order, then I've got no problems asking him to make my body like that of a legendary racehorse, one who moved "like a tremendous machine!" (If you never seen the footage of the race, it really is stunning and kind of absurd what that horse accomplished, a record that stands to this day.) May I move like a "tremendous machine" as I move through the remainder of treatment, gaining momentum with each passing day rather than losing it. I want to end the race moving faster than I started (which is another historical footnote: If my memory serves correctly, he started the Derby running at 36 mph and finished running at 39 mph. He got faster as the race unfolded. The exact opposite should have happened. He still holds the record for the Derby, by the way. Read Bill Nack's book Making of a Champion for an excellent telling of Secretariat's story).

Roughly two weeks of radiation and chemo down, four more to go! And then a break from both, at which point, I don't want to see a single medical provider or rehab specialist.

My Sweetest Companions

For as long as I can remember, they have been my companions. They have been with me through elementary, middle, and high school, college, graduate school, and every other season in between. They have been on countless trips with me, whether on a plane to a Third World country as an adult, or on the school bus as a child. They typically smell good and are easy to hold. Some were real winners, and others were total losers. Some were unforgettable, and some were forgettable. They have comforted me, nurtured me, challenged me, and widened my imagination and my understanding of the world around me. They were perhaps always my first love (horses aside).

Books.

The companions to my soul.

Memoirs. Science fiction. Fantasy. Historical non-fiction. Mystery. Adventure. Young adult. Historical fiction. Romance. Biographies. Sports. Inspirational. It didn't matter, I'd read it. I can't say for certain, but I've probably read upwards of thousands of books across my lifetime.

The book I have the most conscious memory of loving first was Island of the Blue Dolphins by Scott O'Dell. My first grade teacher, Mrs. Manley, read the book out loud to our class. I remember being captivated by the story. It still ranks as one of my all-time favorite books, perhaps due to nostalgia more than anything now.

I spent one summer in graduate school taking a break from all digital outlets - movies, radio, music, social media, television - I stripped all of it from my life for a period of three months. I literally put my TV in the closet so as to not be tempted. It was a detox of sorts. Since I had so much free time on my hands after removing all of those distractions, I read somewhere in the vicinity of 30 books that summer. It was the summer I first read Lord of the Rings. I cried when I reached the end of the trilogy, I found them so powerful and epic. I can't tell you the number of times I've read them since then. The entire set certainly ranks as some of my all-time favorite books, without question. (Confession: I did technically violate my own ground rules for that summer, as I pulled out my TV to watch the corresponding movies of the trilogy.)

Each of these thousands of books have shaped me in some way over the decades of my life, even if I don't distinctly remember every character, ever storyline, every title, or every author.

But it is perhaps the latest one that will forever be the sweetest to me.

I just finished reading Between Two Kingdoms by Suleika Jaouad at the recommendation of my friend Kristina. I sat in the recliner as I read last night, seemingly underlining every other sentence in the book. Packed with so much wisdom, so much perspective, her words resonating more and more deeply with the passing of each page. I got to the last page, set the book down, and promptly started sobbing my face off. And not solely due to the contents of the book, although it is stunning in its own right, and I do highly recommend it, but rather because I had completed the seemingly ordinary experience of reading a book, something I've spent four decades of my life doing without second thought.

This past Sunday marked two months post-op. While I was still in the hospital, the speech therapist came in for an assessment. To clarify, speech therapists can address more than just the physical act of speaking, with which I didn't have a problem. In my case she was there to help with cognition. One of the exercises she had me do, she took a piece of paper and wrote a random assortment of letters on three lines.  So, in the image here, imagine there are no letters crossed out and remove the blue line and the circle around the letters on the far left. If you remove those elements, you're left with the version the speech therapist originally handed me. She then asked me to cross out all of the vowels. 

As simple as it seems, this exercise presented a couple of challenges for me. First, I had actually think through what the vowels were. I slowly crossed them off as my brain sorted out what qualified as a vowel. But once I did that, another glaring problem presented itself: I completely missed the "e" and the "o" on the far left, which is why they are circled. I experienced for an extended period of time what's called visual neglect. This is where the brain simply does not register certain parts of the field of vision. In my case, it was everything on the left side. It's not that I was blind, or that my field of vision appeared black, it's just that things were literally not present. My brain could not perceive them or bring its attention to them. Pretty much anything standing off to the left side of my body didn't really appear in my field of vision. 

For instance, I went looking for my water jug at one point. There was a tray table in front of me and then my mom sitting just beyond that, both somewhat to the left of my body. I could see my mom's water jug on her far side, but I asked her if she knew where mine went. With a slightly uncertain look on her face, she pointed to my tray table where my water jug was sitting, basically right in front of me, but my brain did not register it prior to her pointing. It then suddenly appeared in my sight. Think of it like generative AI in reverse. Instead of things getting added or expanded in the field of vision, they were just disappearing in mine.

My text messages from that week were mostly garbage because I struggled so much to read and then also write in response. My eyes had a hard time tracking from one line to the next. Somebody probably should've taken my phone away in hindsight. We turned the captions on the TV just so we could keep the volume down and limit sensory input for my sake, but I couldn't even read fast enough to keep up with the captions, let alone comprehend anything. The prospect of reading pretty much anything, let alone a book, ever again at that point seemed like an impossibility. I, who have spent a lifetime reading books and reveling in words, wasn't sure if I would ever pick up a book again. It was just another layer of grief in an already seemingly endless pile of grief.

Until yesterday.

So, yes, I started sobbing my face off when I got done reading the book. 

The ordinary act of reading a book seemed extraordinary to me last night.

I was overwhelmed with gratitude to God for giving me back this gift of grace. The tears just kept coming. My mom walked into the room, noticed my tears, and was immediately alarmed something bad had happened. One hundred percent of my tears in the last four months have been a result of grief, anguish, and setbacks. So it was natural to assume my tears this time around were a continuation of the last four months.

Except they weren't. 

I'm so grateful to and so humbled by God for his gracious kindness toward me in giving back to me something I thought I had lost.

My sweetest companions have been returned to me.

Yet another reminder that the night won't last forever.

______________________

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.

Five doses of radiation down, 25 more to go. This past week is surprisingly the best I have felt since surgery on April 16, even with having started chemotherapy and radiation. I have more energy and more motivation. I still get slammed with a wall of fatigue about mid-morning, but I've been getting up first thing in the morning and going for walks up and down our driveway, sometimes up to a mile. It feels good to move my body after being sedentary for so long.

I think I envisioned spending this past week laying (lying?) on the bathroom floor, puking my guts out, but that has not been the case. All praise and glory to God.

I've not had any more seizures since May 30, which feels monumental. I think that has gone a long way in providing stability mentally, emotionally, and physically.

I started back to occupational therapy today. The therapist noted that this is probably the best he has seen my left arm since I started back in late April. Most people would not notice the changes, but I see incremental differences in my arm, each of them small victories in their own way. My plan is to continue to see him twice a week for the rest of this month, and then once a week through part of July. Around July 24, I will start roughly a 30-day break from both chemotherapy and radiation, and I plan on taking a break from everything at that point, to truly just rest and not feel like I'm always having to go to an appointment somewhere. Somewhere in that break, we will get an updated MRI to see how things are progressing after this first phase. I will also have my first round of bloodwork this week to see how my blood counts are holding up.

I also started back to work yesterday after taking most of last week off. I was glad I gave myself space to take time last week and simply focus on starting treatment without the added burden of navigating work commitments.

Onward!

_________________

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