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).

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Functional updates:

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

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.