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!

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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.

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.