Mindfulness and games, part 4 (and final part) Tabletop gaming

Mina and I playing the beautiful game Wingspan by StoneManaier games. Gift from my brother, Thanks Rob! You can tell by my hair that this was close to my recovery from my 2nd brain surgery.
The setup and stuff included in the tabletop game Wingspan. It’s beautifully done and yes that is a bird house at the end of the table
Even Will gets mindfulness time playing Candyland solo at nights before bed, “the Gumball always wins!” You can tell by Will’s hair that he’s starting to really get into the slicked back look.
My brother and I got a chance to play Everdell when I was in Tampa this past June. Another fun, beautiful game! I often find it helpful when someone familiar with a game’s rules and flow can “quarterback” the game play for my first play through. Thanks Rob for quarterbacking this one!

So my last part in the Mindfulness in Gaming series is going to touch on tabletop gaming (AKA Board games). tabletop gaming has come a long way since games like Monopoly and Sorry.

These days tabletop games can be beautiful and complex. Some lasting for a couple hours, some lasting for 30 minutes or so. The price tags have also increased too. I would expect to pay something around $30-60 for a top rated tabletop game. (Wingspan is about $60, as is Everdell).

These games have taken every tiny detail into account and feature incredible artwork. After a game of Wingspan I want to go birdwatching with my camera and add some birds to my Audubon app (Which is great, BTW).

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Mindfulness in gaming series 3: The Overstory

A character driven mystical novel about how trees really communicate with one another and the infinite complexity of nature


This book has come the closest to describing a mystical experience I myself had– which I think is nearly impossible to do since I think mystical experiences are ineffable.
But here’s the passage, which I think is simply beautiful. I don’t even think it needs any context.

A man in the boreal north lies on his back on the ground at down. his head extends from his one-man tent, facing upward. Five thin cylinders of white spruce register the breeze above him. Gravity is nothing. The evergreen tips stretch and scribble on the morning sky. He’s ever really thought about the many miles a tree travels, in smallest cursive increments, each hour of every day. Forever in motion, these stationary things.

The man with his head sticking out of the tent asks himself: What are those treetops like? They’re like the cog-toothed drawing toy, spinning out surprise patterns from the simplest nested cycles. They’re like the tip of a Ouija planchette, taking dictation from beyond. They are, in fact, like nothing but themselves. They are the crowns of five white spruces laden with cones, bending in the wind as they do every day of their existence. Likeness is the sole problem of men.

But the spruces pour out messages in media of their own invention. They speak through their needles, trucks, and roots. They cord in their own bodies the history of every crisis they’ve lived through. The man in the tent lies bathed in signals hundred of millions of years older than his crude senses. And still he can read them.

The five white spruces sign the blue air. They write: Light and Water and a little crushed stone demand long answers. Nearby lodge poles and jack pines demur: Long answers need long time. And long time is exactly what’s vanishing.

The black spruces down the drumlin put it bluntly: Warm is feeding on warm. The permafrost is belching. The cycle speeds up.

Farther south, broad leaves agree. Noisy aspens remnant birches, forests of cottonwood and poplars, take up the chorus: The world is turning a new thing.

The man rolls over onto his back, face-to-face with the morning sky. The messages swarm him. Even here, homeless, he thinks: Nothing will be the same.

The spruces answer: Nothing has even been the same.

We’re all doomed, the man thinks.

We have always all been doomed.

But things are different this time.

Yes, You’re here.

The man must rise and get to work, as the trees are already doing. His work is almost done. He’ll strike camp tomorrow, or the day after. But this minute, this morning, he watches the spruces writing and thinks, I wouldn’t need to be so very different for sun to seem to be about sun, for green to be about green, for joy and boredom and anguish and terror and death to all be themselves, beyond the need for any killing clarity, and then this- this, the growing right of light and water and stone– would take up all of me, and be all the words I need.

The Overstory, A Novel, Richard Powers

So it’s a character driven mystical book, based partly on the real life and research of Suzanne Simard— don’t get too attached to anything. Richard Powers kills more darlings than George RR Martin. But this book has a narrative and a character that has helped me reconcile my own link between a digital and physical love of nature. I’ve pondered before on how I could be so attracted to the digital when I also have a deep love and enjoy spending time in real, unfiltered nature / creation and how my role models include nature loving mystics like St. Francis of Assisi, Rumi, Buddha, and Christ.

20 minute TED talk but the stories about grizzly bear escapes and the revelations about how forest trees communicate make it worth it for sure.

The latest issue of WIRED magazine also ran a small feature on The Overstory, mentioning Suzanne Simard’s work.

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Mindfulness in gaming series 2: That Dragon, Cancer

How do you make a mindful game out of saying goodbye to your child with a terminal illness?

Continuing our series, I’m shifting gears away from myself and my own reality to examine another familys’ struggle. Before my first craniotomy to remove my metastatic melanoma brain tumor, a friend told me something odd but honest “John, the good thing is, is that this is happening to you.” It may seem like something odd for a dear friend to say to another going through brain surgery and cancer but he was right– his point was that it was not happening to either of my children– Will or Mina. But what if it had? There is an “game or experience or whatever-you’d-like-to-call-it” out there that showcases what happens when a child goes through a terminal illness: cancer. The name of that game is That Dragon, Cancer. And I’ll be discussing the game, the game’s subject, Joel Green, and the follow-up showcase documentary: Thank you for Playing, which gives in inside look into the Green family’s struggles and Ryan Green’s families’ and teams’ role in the production of the game while managing his child’s terminal illness.
This is a heavy subject and will be a heavy post. If you’re in vulnerable location, it might be best to read this post later.

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Mindfulness in gaming series 1: Why games make Us better and How they Can Change the World

Reality is Broken: Why games make Us better and How they Can Change the World

Reality is Broken: Why games make Us better and How they Can Change the World

…I’m healthy enough to get back to my ponderings.

I’ve been mulling this over for a while and I’m like to have a multi-part series on mindfulness and gaming (digital and non-ditigal). For the first part I’d like to share a book I read soon after my seizure called Reality is Broken (why games make us better and how they can change the worldby Jane Mccgonigal).

Cover of Reality is Broken by Jane McConigal (Why games make us Better and how they can Change the World)


For me, the title alone caused me to gravitate to it. As I’ve shared previously, the concept of my life (and death) went through a heavy overhaul after the seizure.

Why go into a topic like mindfulness and games– two subjects that seem at odds with one another? For me personally, I’d really like to reconcile my own gravitation to both. I think each is can be immensely helpful and both have helped me significantly in my own journey of healing, thus far.
On one hand, I have my love of nature through historical figures and some of my own mystical experiences. I’ve written before about how St. Francis and his unique bond with nature and how there is something mystical about dying slowly outside (St. Francis, Christ, and Marcus Aurelius are good examples) On the other hand, I still really enjoy games (digital and non-digital) and, the environment, the challenge, and the happiness they bring me– how do those fit together? For one thing, when you’re playing a game you are never alone. I’ve heard a game defined as

Playing a game is the voluntary attempt to overcome unnecessary obstacles.

Bernard Suits

When you’re playing a game (even solo) you’re engaging with the designer of the game, people who have played the game before you, and in a way people who will play after you (think about high scores and leader boards.) This helps with the problem of the paradox of self-help (which I’ll get into later). After a lot of thought and reading, I have my own ideas but it’ll take a few posts to hash it all out. Not all of these posts will be easy to read, but some (like this one) will.

Part of my interest also came from a podcast I’d heard here as a guest on. If interested, I believe it was the Tim Ferriss podcast, link here.

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The goal posts move, again

Update post

“I’ve been told’ve been told that all these ties would surely bind
And hold me tight
Hold me tight
‘Cause I’m hanging at the end of my own line
And I hope that all these ties will surely bind

When, oh when, will I be changed?
When, oh when, will I be changed?
From this devil that I am
When, oh when, will I be changed?

Josh Ritter, When will I be changed?

It’s been a rough roller coaster folks. I was planning on one of my pondering post (I’ll still get to it) but first I want to give an update.

Written from someone more cable of clear communication at the moment (Paige):

John had been growing steadily worse since [last] Friday. He had a previously scheduled appointment with his neurosurgeon on Monday, which was supposed to be our final check with him, but John did not do well on the neurological exam, so he had an MRI Monday night. The MRI showed increased swelling that is crossing the center line again

The neurosurgeon and radiation oncologist agree that John is still suffering from radiation necrosis, which is causing the swelling. Though the surgery cleared out as much as could be taken out, apparently some had seeped into surrounding tissue. The hope is that returning John to the highest doses of steroids for 1-2 more months will help that tissue heal on its own, now that the surgery cleared most of it out. If that does not occur after a couple of months, then we will have to consider other options. The Radiation Oncologist says that he has seen this play out in other patients, and most see significant improvement within two months. 

One of the hardest parts is that I was sure I was walking into an appointment that was going to grant me freedoms, not take them away. It’s also a return to scheduled pill taking, which I thought I was over with for the most part– steroids every 8 hours, including the middle of the night. Previously, I just had to take a dose in the morning and that’s it– I want badly to get back to that. It helped with sleep and daily routine very much. I don’t like living by the clock again, always within reach of a jar of pills.

Writing and reading bring me a lot of relief so that’s nice. I also think LEGO building is really helping my brain. There’s a passage in The Art of Learning by chess phenom, Josh Watskin, when he talks about playing twelve players simultaneously. Which usually wasn’t challenging for him (similar to scenes in The Queen’s Gambit) but inevitability someone would cheat and move pieces when he left the room and upon returning, it was the most confusing experience ever. Nothing would make sense until he pieced together that the opponent had cheated and that would make reality right again. The same thing happens to me sometimes in daily life, when I’m trying to get my brain right. But no one is cheating, it’s just life and it’s just my brain trying to figure things out again— I don’t like it. I don’t like that I can’t take a walk by myself or pick up my son and put him on my shoulders or carry my daughter downstairs when she’s sleepy and doesn’t want to wake up for school yet. I still can’t drive, wash my hair or cut it. But every appointment seems to push these events further out and not closer. The messaging from the doctors seems to get more murky, not clear. It’s suffocating. I’m not dealing with cancer, so sometimes the reaction from various doctors and centers seems to be, “What’s the problem?”

The steroids make me hungry and emotional– everything makes me cry including detergent commercials (“they got the stain out!”)I’m eating all the time. I’m the most I’ve ever weighed (“puffy John”). Exercise is out of the question at the moment. Diet is difficult when you can’t scan the grocery isles and be very selective about nutritious food. (keep in mind I can’t drive.)
I’m extremely grateful for everyone who has donated cash for take out of money for activities that help my brain like LEGO or craft projects– thank you so much. It’s really helping.

To finish up here. I don’t usually get extremely religious or preachy but sometimes you hear something you simply must repeat. My apologies if you find the below offensive or a turn-off. It’s my blog so I get to post it. Please move on if it doesn’t strike a chord with you. But denouncing Nazis shouldn’t be a difficult thing to align yourself with. I am writing this blog from my grandfather’s desk who was a POW in WWII and fought with his life against Nazis for the freedoms we have today. To watch some of us idly standby and dispose of accountability in the defense of an empty authoritarian leader who offers no truth and nothing but false promises is more than just heartbreaking, it’s a bridge to despair.
The following passage is from my pastor’s sermon 2 weeks ago. I don’t think many have the guts to get up and say this to a room full of diverse and unknown opinions so that’s why I think it bears repeating on my blog. Take it or leave it but don’t stand along side Nazis please.

“These unclean spirits traffic in hate and bigotry, racism and xenophobia, and are fueling a global rise in authoritarianism—sometimes called the new fascism— as would-be strong-men-and-women around the globe prey on the fears and psychological vulnerabilities  of people who are all-too-ready to believe and follow  anyone willing to entice them with lies and empty promises. 
This global phenomenon is like the religious cults of yesterday, only more powerful and infectious due to the pervasive reach of social media.These forces of death at work in America, and among American Christians, as the insurrection at the Capitol provided clear evidence.
These forces of death  are at work against the goodness of life, but Jesus has come, in word and deed, to stand against the forces of death. Now you may prefer that your pastor avoid these things in his sermons. And frankly, it would be easier if I did. And it would be easier to avoid talking about these things, if it weren’t for our fellow Christians who were carrying “Jesus” flags,  alongside Confederate flags and flags promoting violent insurrection, as they stormed the halls of our democracy, or displaying a “Jesus Saves” sign  alongside a gallows built to threaten our elected officials.
My Christian friends,  insurrection in the name of White Christian Nationalism fueled by lies and false conspiracy theories, is not the work or the word of Jesus.  It is the work of false prophets. 
Whatever spirit is possessing the White Supremacist mob  is every bit as unclean as the spirit possessing the man in the synagogue at Capernaum.  
Given that this past Wednesday was Holocaust Remembrance Day,  there is another rule of thumb that I should mention  on discerning false prophets and unclean spirits:  that is,  the presence of Nazis in the crowd.“Be they “neo-Nazis, casual Nazis, master race Nazis,  or the latest-whatever-…-Nazis… if they are on [one] side of the demonstration?  [That is] the wrong side.
It is tough to argue moral equivalence when…standing next to a Nazi.  Look to [the] right.  Is there a guy wearing a 6MWE (6 million wasn’t enough) t-shirt?  [That’s] the wrong side.  Look to [the] left.  If that guy is wearing a Camp Auschwitz t-shirt? Wrong side. Are speakers being applauded for referring to things that Hitler got right?  Wrong side.
The forces of death  are at work against the goodness of life… but Jesus has come, in word and deed, to stand against the forces of death. To the extent we stand in resistance to those forces, we stand with Jesus, and are following him. 
We have bronze plaques in our sanctuary bearing the names of Fourth Pres members who offered up their lives in the World Wars fighting against  these forces of death. May we find courage in remembering their sacrifice as we are called to stand against these forces of death— these same forces of death—today. God promised a prophet like Moses, saying  Anyone who does not heed the words that the prophet shall speak in my name,  I myself will hold accountable. Friends, the gospels proclaim that Jesus was and is that prophet.  And we all—all of us— will be held accountable to his words.
You know, these are difficult days. And it give me no pleasure to have to preach sermons like this. I long for the day when I don’t have to. But the gospel demands it.
The gospel calls on us to stand under the authority of the one who was willing, in both word and deed, to confront the powers that destroy life to call them what they are, and to speak a word that sets free  those who have been enslaved by the unclean spirits of the age. 
The gospel may call forth convulsions for those under the spell of the unclean, but they are convulsions  on the way to freedom. 
Friends, let us stand together  under the authority of the one who gives life to the world. Jesus Christ our Lord.
In him—in the Jesus we come to know by a careful reading of the gospels— the kingdom of God has come near; 
Let us all repent,  and believe the good news.

Struggles and some good news

Now I’m trying to mend my ways
I had enough of pain and bad will
Good enough for you someday
Till then, it’s a losing battle…

It’s always been in my nature to be the beast
Blame the maker but stay with me

Josh Ritter, Losing Battles

Hello everyone! I am glad to be back and writing again. I am pacing myself very carefully considering my strict screen / reading time limitations. I’ve been very eager to write and update but haven’t been able to due to those restrictions / limitations (post surgery was limited to five minutes a day of any screen time).

The second time has been much more of a struggle. The hospital stay was filled with lots of intense situations. My surgery went fine but protocol requires one night in the ICU. While I was there, there was no ICU room available so the hospital converted the post-op room into an overflow ICU. I was stationed there for one night, checked in on at every hour to make sure I was stable. The things that I heard and were happening in that overflow ICU. It was brutal. I had a perimeter of curtain drew around me so I couldn’t see anything (and really didn’t want to) but I could hear everything. Lots of moaning and suffering. The hospital staff was doing their best but you knew there were stretched too thin and worn down. Nearly everyone I talked to was on a temporary “floating assignment” and away from where they normally work. I overhead talk of how many nurses were calling in sick because they themselves had tested positive for COVID. Still, the nurses were there, holding the line, doing their jobs. It felt like a military situation in someways. I thought a lot about institutions (like hospitals and healthcare) and mission (this was more than just a job to these men and women– there had to be some higher calling and strong purpose to what they do everyday for their job). Even though the results were not A+, these men and women were holding it together by their own sheer grit. Still, being in the hospital, espeically the overflow ICU felt like being in a bomb waiting to explode and I wanted to get out of there (I can still hear the sounds from that night). I wore my facemask nearly all the time. One time Paige found me with my facemask and eyemask on (I brought the eyemask so I could sleep, the lights stay on in the overflow ICU 24 hours) I must’ve looked like a cross between Darth Vader and Bane, trying to sleep. I was very nervous about contracting COVID the entire time. At one point Paige had to take my facemask away so I wouldn’t try to sleep with it on.

One of the good things was how well I was doing post surgery. As opposed to the first cranitomy (or cranny as my neurosurgeon starting referring to them), I remember it taking a while to get “with it” and feel lucid. This time I was lucid and with it from the moment of waking up (still in the operating room!). I remember looking at my hands and pumping each hand to make sure I had motion on each side of my body…I did! Paige got to come back and see me and she was blown away on how well I looked and well I was communicating. My neurosurgeon talked with me and I got to hear how well the surgery went.
You don’t know this, but there was a strong chance they would find cancer when they opened me up again. At our consult at Wake Forest, the surgeon there said they find it, “a lot”, if they find it, they remove it. The also were installing “chemo wafers” on my brain in case there was ever a reoccurance. These “chemo wafers” are supposed to be especially good at treating melanoma. So when they operated on me, there would be taking a sample of my brain tissue, freezing it for 20 minutes, and running a short-term pathology to see if it was malignant or not. Any other samples obtained would be send to long term pathology which takes two weeks but would determine if the sample was cancer tumor or not (this was how I was first diagnosed with metastatic melanoma). Well, when I came to the first question I had for my neurosurgeon was “What was the path?” Response: “Necrosis. Dead brain tissue. There’s another sample sent to long-term path.” I knew what that meant– I wouldn’t know long term path for a couple of weeks. But in the short term, they hadn’t found cancer, only dead brain tissue consistent with necrosis. This was very good news!

Continue reading “Struggles and some good news”

My Survivalship Story Revised- and an Update

An update about this week

[A lot has happened this month. My last post discussed the timing of my needed urgent surgery. I was told that because of insurance reasons I would not know until the day before the surgery but they would go ahead and schedule it. So the surgery was scheduled for Tuesday, December 29th. Because insurance offices were already closed for the holidays, we would not know officially until Monday December 28th if it would be approved (even though it’s an urgent surgery I supposed their protocols require attention since the surgery would be before the end-of-the year). Well, I got the call and the surgery is on for tomorrow. The next time you see a picture of me, my hair will be a lot shorter. Tomorrow at 9am I report to the hospital for another craniotomy to remove the dead brain tissue. It’s been a difficult month and the anticipation leading up to this surgery has been brutal. The drugs I’ve been on to keep my brain swelling in check have worked well for my brain but my body is ready to surrender to the needed recovery that will have to take place over this next week. There has been a lot of anxiety, shaking, crying, and insomnia. It’s been hard to bare that during Christmas. I’m looking forward to getting this done, getting back home and recovering and starting to feel like myself again.

Paige is going into full caretaker-mode and will be my visitor during my hospital stay. We still don’t know yet how that fully works and won’t until tomorrow. I have some family driving up to see me but with COVID protocols it’s all a mess so we all just have to wait and see. It’s a lot of impossible situations.

Thank you all for your support and prayers. If you’d like to do something for me or my family during my recovery, please wait until I get home from the hospital and I’ll get the word out about what can be done (meals, etc.).

I plan on blogging during my recovery. From what I understand, my limitations and restrictions will be the same as before. So we’ll just have to see.]

Some news about the direction of the blog

I haven’t posted in a while. It’s not because I haven’t been writing. It’s because since the seizure I’ve been thinking a great deal about what I want this blog to be and some goals that I have in mind.

After a lot of thought and discussion with Paige, the wisest one in the household, I’d like this blog to start featuring survivialship stories. I believe there is a critical need for positive survival stories for those facing cancer or those who have a loved one facing cancer. I sought those out when I underwent my treatment and I clung to those stories like rosary beads. Even with my limited reintroduction to the world, I’ve heard other success stories in my own community and want to share them. I don’t want to focus on figures that can take private jets to the most advanced medical centers in the world for the best treatment. Rather, I’d like to focus on people and families you and I would come across in our daily lives. And there are so many stories. Cancer is not going away. But we keep surviving and it’s import to keep reminding ourselves of that. Our stories not only contain the heavy pathos and revelations that only those who’ve stood next to death can feel. But these stories contain details– details that may help you, or someone in your family who may be affected by cancer. If there’s even a chance that it helps only one person then let’s keep sharing these stories.

While thinking about where to start it became starkly apparent that my story had many holes in it to fill in. If you’ve read my blog since I start writing it in May 2019 and you read my original ‘My Journey’ page, then you read my experiences right up to the point of my first PET scan. I did not even yet know where the cancer was in my body and what my treatment might be. In the last couple months I’ve been working to fill in the gaps of the story. To tell my survivorship story from going to work as usual on a Thursday morning, discovering a malignant brain tumor later that day, to finding my tests results in late August that my brain and body were clear of any detectable signs of cancer. So it the most natural place to start was my own story.
I know many of you read the original post. This one is much longer and contains a lot more detail– but I promise you, this will help you or someone you love that has to deal with cancer and that’s going to happen to you at some point in your life. I’m sorry, but that is a reality.

And to be clear, my struggles are not over. But like chapters in a book, the revised Stage 4 Cancer Survivalship Story page is the story of my cancer survivialship, not my struggles with immunotherapy-induced hepatitis or my ongoing struggles with necrosis. But at 26,000+ words I had to break somewhere. And, many struggles with cancer end up being with side-effects of the treatment itself, which I feel deserves its own attention due to the detailed nature of what goes on in our mysterious bodies after we receive these amazing but still yet still nebulous treatments. As an expert melanoma doctor at Duke Cancer Center once said, “Sometimes, I fee like we’re still in the dark ages with these treatments.”

So here is my story again. It’s Rebooted. There are more details. Some dates have been corrected. Some original memories righted. Memory is a funny thing. I wrote what I remembered but it’s only after talking to family and reflecting on it more that I could recall that what I wrote was not actually what happened sometimes. For instance, my family wasn’t there in the ICU to see me wake up post-surgery. That’s crazy. Family wouldn’t be allowed in until I was awake, conscious, and stable. My mother didn’t leave my side while I dreamed I was dying and had an out-of-body experience. She was sitting right next to me because no one else was with me at the time. So, this revising my own survivorship story let me reflect on those details, and piece together our insane calendar of events that was the summer of 2019.

I’m eager to start gather more survivorship stories. Unfortunately, I think I’ll have to wait until I can sit next to someone at a restaurant and talk about their experience with cancer intimately for multiple hours. COVID times are not the best of times for cancer close talk.

I still intend to publish posts about my spiritual ponderings. I’ve added some categories (as if that matters to readers) for book reviews, reflections, survivorship stories, and updates. I still have yet to decide what to do with the “updates” section. I’d like to keep everyone who wants to be up-to-date with my health but I don’t want to overwhelm anyone or have redundant posts. Please reply with a suggestions.

The Hard Road Ahead

It’s been a while since my last update or blog post.

This is mostly an update. Sorry no picture for this post.

While Christmas approaches we have been through a lot and are about to go through a lot more.

I was in the hospital last week for brain swelling. It’s the worst I’ve looked and felt through this entire experience. I lost feeling on most of the left side of my body. I couldn’t use my left hand (I’m left handed). Hand-writing and daily tasks became extremely difficult. I needed a STAT MRI which showed radiation necrosis swelling in my brain. It was significant enough that it was pushing on the other side of my brain and creating another mass-shift– disrupting the center line of the two brain sides of the brain. The results were the same “whooshing migrate” headaches I felt in April 2019 but also the loss of strength on the left side of my body. This included my face. Paige said it looked like I had been to the dentist. I had slowly noticed this happening but I had conflated it with another issue (taper off of another drug). After my MRI result discussion I was directed to increase my steroid intake, which should also help with the control of the left side of my body. Unfortunately, by this time the swelling was so bad it was causing serve nausea and I couldn’t even hold down water. So every time I took medicine I threw it up. At an appointment at the cancer center they took a look at me and sent me to the hospital for IV fluids and IV steroids. In the meantime they made me an appointment at Wake Forest Hospital for a surgical consult about a less invasive procedure to remove the dead brain tissue from the necrosis, which would stop the swelling. The appointment was set for Monday 12/14/20. I would have to improve by then.

To review, in June 2019 I received stereotatic radiation treatment to my brain to kill any remaining cancer cells possibly left there after my tumor removal surgery. One possible side effect is necrosis, or dead brain tissue. We’ve since learned it appears 15-18 months after treatment which falls in this window. My radiation oncologist said I appeared to be a “text-book” case of necrosis.
It’s not cancer but it does have its own serious issues that need to be handled. We known that I would probably need to have a procedure to remove this tissue but previous appointments were optimistic that this procedure could wait until a various time in 2021, possibly after COVID numbers went down. At the same time they also proposed a less invasive procedure called Auto-LITT that showed a potentially incredible recovery time. Two of my doctors recommended Wake Forrest for the procedure. A consult was set up for next Monday 12/14/20.
My hospital admission was set up with the express goal of getting me healthy enough in time to a surgical consult at Wake Forrest to evaluate me for this procedure.

Continue reading “The Hard Road Ahead”

A Good Day to Die

After my seizure experience I am attempting to pick up the pieces and reconcile my two very different experiences of near death.

If someone hears about a brain tumor most people would think it’s the end. A seizure, on the other hand, happens fairly often. But for me, it’s the seizure experience that has me seeking out ways to cope with the trauma.

My brain tumor experience was full of messy emotions, mystical experiences, and saying goodbye to everyone. It was long and drawn out. I waited five days in a hospital room for the surgery. I had Paige by my side nearly every minute. My parents were there, I had visitors from church who brought flowers, and we had family drop everything to take care of our kids for what ended up being my nine day hospital stay. I really felt like I left everything there. I was full of gratitude and awe looking back at my life and what I had experienced. There was no bitterness, no regret, no desperation for anything more. Before being wheeled off to the operating room, I was held by my wife and my parents, and I told them where they could find me if I left my body. It was sweet, serene, and peaceful.

The seizure experience was the exact opposite end of the spectrum. There was no build up. There was no time to contemplate. It was a futile struggle of myself against my own body, failing to cooperate but knowing that something was very wrong with my brain. I flailed at a window in front of Paige and my children, asking for help, and then fell into a bush and went to black. 

That’s that.

Continue reading “A Good Day to Die”

My Seizure Experience

The kids’ pinwheel that I shattered when I collapsed.

This past Tuesday I experienced a seizure. It was a partial seizure followed by a complete seizure. This is the scariest thing that’s happened to me yet.

I was working on the bikes outside. It was nice out, and I was trying to get the kids some exercise. I had set up shop along the sidewalk that faces the living room windows of the house. Paige and the kids were inside playing a card game of Sleeping Queens.

My bike had a flat tire. My bike also had the tag-along on it (a kid’s bike with an attachment you hook up that makes it look like a double bike). I tried fixing my flat, but realized something was wrong with the fancy presta valve I have on my mountain bike. Something had dented the valve itself, and it wouldn’t hold air for very long. I tried to brute force straighten it, but nothing worked. I realized I’d need to attach the tag-along to my wife’s bike.

Leaky Presta valve and hex multi-tool.

Currently, my wife’s bike had a wee-ride on it, which let Will ride almost on my lap. It was a pain to get off, but I finally tossed it aside and lifted the seat post to slide the tag-along attachment through it.

The last step was to tighten the hex nut holding the seat post in place. I used my hex multi-tool and tightened it. After I finished, I looked over my left shoulder at the sky. But something was wrong because I kept looking over my left shoulder at the sky. At first I thought I was repeating the movement to be funny, even though no one was around. Then I realized I couldn’t stop performing this movement. With every fiber of my being, I couldn’t stop. I was stuck doing this awkward movement. It was like I was a bugged video game character, stuck repeating the same ridiculous series of movements, no matter what input you give the controller. I was able to turn and face the window where I saw my family. Somehow, still turning to look over my shoulder constantly, I was able to hop toward the window. I was stuck repeating one word over and over: “Help.” I managed to flail one of my arms at the window. I heard Paige call out, “JOHN! JOHN! JOHN!” and the last thing I remember was falling into the bushes. I blacked out. 

View from where I fell into the bush after flailing at the window.



Paige later told me I came to three or four minutes later. She had told the kids to go upstairs to Mina’s room and then dialed 911.

I had been shaking and starting to foam at the mouth. She thought I was dying in her arms.

I called her “Mina” a few times and tried to get up under my own power: she wouldn’t let me, and I didn’t have the balance. I heard sirens in the background. My eyes closed again. When they opened again, I was surrounded by emergency personnel– EMTs and firemen. I saw a gurney being rolled next to me and realized what it meant. I was trying to answer their questions. There were so many faces to focus on, and Paige’s face and assurances, too. I could see my neighbor in the background running in and out of his house: he’d soon be taking care of my kids for a few hours. 

Once I got in the ambulance, Paige was calmly answering a series of questions. This calmed me down, too. I was answering questions. Or, at least trying. I kept giving them a 7-digit social security number instead of the full 9 digits. I eventually got it right. The EMT hooked me up to a heart rate monitor and started giving me oxygen. My heart rate was through the roof. I tried not to look at the back window because I could recognize the streets, and it was making my head swim. Paige was not in the ambulance with me, but she was following it after taking the kids to the neighbor’s house. I tried making conversation with the EMT to prove that I was stabilizing. The hospital we chose is only 15 minutes from our house. I insisted on not going downtown– I’d done that ambulance ride before, and if I could get everything I needed at the closer hospital, it’d be better. I was given a face mask and placed in a room in the ER with a bed. (COVID hospital experience was just like the usual, except everybody had face masks.) I was able to scoot off the gurney and on to the bed under my own power. Paige was then with me. A nurse came and gave me an IV hook-up. They would soon be giving me Keppra, an anti-seizure med I was on earlier in the year, but the doctors had stopped prescribing to me in June. During conversation, the nurse mentioned that she was an epileptic. I asked about restrictions and limitations.
“It could be different, but South Carolina law doesn’t allowing driving for the first six months.”

I tried not to react.
I was alive and being cared for– that was a blow, but it was also something I’d dealt with before, just not for that long. A tall, long grey-haired ER doctor who looked like my old boss attended to me.
They would be giving me a CT scan to see what was going on in my head. They were sure it was swelling, that they could give me a steroid to stop the swelling, put me back on Keppra to stop the seizures, and send me home that night. This was great news to me! No nights in the hospital. (After a 9-day stay in a hospital, no duration sounds appealing.)

The CT scan was quick. The results took a while to process, but it was deciding what to do with me that took the hospital staff their time. The ER doctor came back and explained, “Nine times out of ten, we give you a steroid to stop the swelling, get you an IV of Keppra and a script, and we send you home. But you’re the one out of ten. Because you’re already on a steroid and trying to taper off, we’re going to give you that steroid, the Keppra, and keep you overnight for observation.”
My heart sank: I looked dead-eyed at Paige. For a few minutes there, I was going back home, but now I was checking into hotel “who-knows-what?” 

Paige ran home to pack me a bag. I wasn’t alone very long before she was back. We were then informed I was getting an MRI for my head that night. Previously they said it was too late.

We saw the hospitalist, who asked me a series of questions before having a room prepared for me. We said our emotional goodbyes, and I was moved to a wheelchair to be taken to get the MRI with my bag on my lap. I was the last MRI of the day for the hospital. It was pretty standard procedure– loud noises and a claustrophobic mask. I usually meditate very well during MRIs, but this one was different. I had trouble coming back from my distractions. Afterwards I was wheeled up to my room and laid in the bed prepared for me. By this time it was 9:30pm. I had my seizure about 4:13pm, as noted by the call log on Paige’s phone, when she called 911.

A nurse came in to place electrodes on my chest so they could monitor me via an EKG. They took my vitals and told me they’d be in every 2 hours to check on me.

I tried going to bed, but I couldn’t sleep.

The next morning, the oncology doctor assigned to the hospital did rounds and came to see me. A nurse practitioner was with him. There were communication issues from the very beginning when I explained that I’d like to record the conversation since my wife couldn’t be there and she picks up on stuff I don’t.
“Ok, is she on the phone yet?”
“It’s recording.”
“She’s on the phone?”
“I’ve hit the record button.”
“Is she on?”
The nurse practitioner had to interject. 
I was then informed that they were scrapping my previous steroid, Prednisone, and giving me the steroid they wanted to give me yesterday, Decadron. At this point, I didn’t care, but I had been tapering off of Prednisone for over a year. I had to start taking it due to the toxicity effects of my treatment giving me immunotherapy-induced hepatitis. Now I guess I was starting something from scratch. Whatever. It also meant I’d have to stay another night for observation, since I’d be starting this new drug. The doctor then informed me that the swelling was either caused by necrosis from my radiation treatments or from a recurrence of cancer in my brain. He urged me to consult with my radiation oncologist, my usual oncologist, and my neurosurgeon. Then they left.

I sat pulling up MyChart– the doctor communication app on my phone. I could write messages to all those doctors from my bed. My fingers were still not working well enough to text. I had to use voice-to-text, which, as a writer, feels awful. I wrote messages to my neurosurgeon and my oncologist. My radiation oncologist was the only doctor I couldn’t reach on the app. Paige was working that angle and was supposed to hear something back.

My neurosurgeon, my superhero brother, was the only one to review the previous night’s MRI and reply. “Swelling looks to be effects from radiation therapy and not cancer recurrence. Feedback should also be sought from radiation oncologist and hematology / oncology.”
 
So necrosis? Dead brain tissue? Yay necrosis?

For the life of me I still don’t understand why I was the one reaching out to those doctors that Wednesday morning. Those doctors were his colleagues. Wouldn’t it be easier for him to pick up the phone and call them?
Why put this on me, in my condition?

Wednesday morning progressed, and while stretching, I starting hiccuping. It lasted for hours. I tried everything– nothing worked. I slept through most of the day Wednesday; I was still so tired and woozy from Tuesday. I could’ve taken a sleep pill Tuesday night, but forgot to ask for it. I wouldn’t forget to ask Wednesday night. 

Later in the day I talked to my nurse about discharge. I would be able to get out Thursday morning after the oncology doctor made his rounds and got to me. Until then, I was stuck. I wouldn’t be hearing from my radiation oncologist or my normal oncologist at the hospital. Paige was told the radiation oncologist “didn’t work here anymore.” But I had received my cyberknife treatment at the hospital where he was currently working. It sounded like they expanded and offered him a better position. Paige was told that, regardless, an appointment would be set at discharge. It wouldn’t be: I would come home from the hospital without an appointment to see him. The paperwork only contained his name, his old address, and a recommendation to see him. An appointment for my normal oncologist was set for the end of the month, which seemed forever away, but there was no changing it (I called at home and tried– it was a no-go).

The sleeping pill on Wednesday night worked wonders. I woke up early Thursday morning and was waiting on the doctor’s rounds. He came with the nurse practitioner later than I expected. I mentioned the hiccups since they were so terrible. He recommended I plug my ears for 30 seconds. I didn’t push him on anything else since I really didn’t think this guy was helping me very much. I just wanted to go home and see my typical doctors. After they left I asked for the discharge nurse and called Paige. I was home by 12:15pm.

The first thing the kids told me in the car was that I was a silly-billy for knocking on the window like that. Apparently, nothing scared them. They watched the fire trucks and the ambulance pull up from the second story window in Mina’s room.

It’s hard being home. It’s not like my first hospital visit. Now I have the creeping thought of “What if I have a seizure?” every time I go to do something. I’m scared to do anything alone. I’m googling seizure apps and am looking at smartwatches. I keep hiccuping. I’ve discovered it’s a side effect of the Decadron. I got a pill to try to take care of that, too, but it took 3 hours for it to work last night and might have some psychotic side effects (great).

I can’t sleep– I guess I’m starting over with this steroid stuff. I was awake at 4:15am and decided to start typing this.

We’re on pins and needles waiting on Monday afternoon’s appointment.

UPDATE:

We had the appointment. I’m fighting necrosis now– dead brain tissue caused by the cyberknife treatment I needed in order to clear out the cancer cells from my brain. The swelling was not caused by a cancer recurrence, so that’s the good news. I’m trying to come to terms with this newest setback. The doctor confirmed that under South Carolina law I won’t be able to drive for six months. I have an MRI scheduled in three months to check progress. If it worsens, then I’ll need to have a procedure done at Duke or Wake Forest to clear away the dead brain tissue. COVID is going to make this very hard on our family.