Quality of Life (AKA where I’ve been)

I’ve lost so much weight it’s a problem. None of my clothes fit and I need special belts with no notches to make sure my pants stay up. I think I’m back down to my high school weight or even maybe late middle school.

Every since my first brain surgery I’ve notice a “pulse” in my head when I rest against a pillow. It’s like what you might feel in your finger when you have a finger stick at a doctor’s office. I think of Buddy the Elf saying, “My finger has a heartbeat!” It keeps me awake unless I position my head in the exact center of a pillow. Now with the weight loss, I feel my whole body’s heartbeat at night– It’s strong enough that I feel the movement in my chest. I make an art of finding the perfect position where I don’t feel any pulses long enough so I can sleep.   

My evening routine of sitting and building LEGO sets is met by back pain and body aches when I standup to finish for the night. The act of getting down to a hard surface and then trying to sit and then stand back up filled my head with the pain I knew that would come. My upper-body strength is gone. I struggle to pick up Will whenever he asks, most of the time I needed to leave it to Paige.

Mina and me on her 11th birthday. Cake by Paige.

I try to do push-ups like I would do after my treatment, and my body collapses on to the carpet (forget about trying it on a hard surface).

I find myself in a position that many men fear, empty of strength and endurance. I am emasculated.

When I took my last dose of cortisol steroids in November of 2021, and now I feel stiff and uncomfortable all the time.  I was told the feeling would “probably” last about six months. My vegan comfort food is void of all taste (all vegan food really), so I abandon veganism, ironically to become more healthy. When I need it the most I cannot gain a pound of weight despite indulging on all of the food I was avoiding during my time of cortisol steroid bloat and heaviness. I eat cake, milkshakes for lunch, ice-cream for after dinner. The sugar headaches are gone, and the weight is gone. Yet I cannot do the things I desired the most when I was under the control of the steroids. Even sitting down for long periods of time hurt– I have no butt. It was suggested I take a cushion with me where ever I go, but after seeing a co-workers cushion laughed at as a “booster seat,” I decide to live with the pain.

When I’m at doctors’ offices they measure my blood pressure and once its displayed they exclaim and tell me I should go to my doctor or a hospital. They make me take it again when I’m standing up and its marginally better.  The only reason they let me leave, I think, is because Paige is always there with me. My blood pressure is low but I have little trouble in daily life. If I stand up fast, I steady myself and move on. This continues for months. I return to work. The doctors have cleared me for that.

I arrange a part-time schedule. It’s only supposed to be two days a week. It seems like enough to make progress on projects but not get sucked into the inevitable overtime deadlines and crunch. Returning after two years and after the worst of the pandemic, I know my boundaries, and I won’t let work overstep it’s given place in my life.  During working hours the office has the low hum of computers running and mice clicking, but the human interactions are as silent as a monastery. There’s the half-hearted, “How was your weekend?” or technical questions about CAD features. I sit in the cube-farm of the office. It features brand new standing desks and low-profile cube-walls so everyone is visible. There are project discussions about how late somebody can work that night, if a deadline can really be met, or griping about a new county permitting requirement. But when it comes to actual sharing or getting to know a human being, it’s radio silent.

“I’m a stage 4 cancer survivor and that’s why I haven’t been here for two years,” I announce to no-one in particular.

Engineers do not have the tool set to talk about or address cancer, or at least it’s very rare. They are good at laying out a project and finding the resources to execute the issues, but cancer is not a billable client with a deadline.

To their credit the people around me respond and thank me for sharing. I realize then that most of the office knows except the people I’m sitting three feet away from whenever I’m in the office. “I wanted to tell you because everyone else knows except you all.” I realize it’s the truth as I’m saying it. My disease has been a known quantity to the people that were there that Thursday when they found a 2.5cm malignant tumor in my brain. But its been two years and everyone that was there has an office with a door in this new building, and the cube-farm are all new co-workers to me except one person.  I understand that it would be against the law for anyone to discuss my health in the workplace, but it’s still alienating.

My questions about software changes I’ve missed are met with helpful responses and patience. I still find myself heading out to lunch alone, usually grabbing a milkshake and some fries. Despite the junk I put into my body, my weight doesn’t move. I know this isn’t healthy– I want to gain back weight and feel healthy before making myself a diabetic or give myself a heart attack.

My non-work days usually consist of shuttling the kids to school and picking them up. Some of those days are stacked with doctors appointments once the kids are at school. This routine starts during the winter and my body takes in any cold and holds on to it for too long. At several outdoor winter events I attend, I notice my hands turn white and my teeth chatter. I seem to be the only one this cold, everyone else is commenting on how nice it is outside and we should hold these events outdoors on a permanent basis. Even sitting at home I find my hands turning white. I do everything I can to  warm them up, but nothing stops me from being cold. Especially office air-conditioning. I go to the mens’ room just to run my hands through hot-water.

In a sense, I hibernate through the winter. On off-work days I drop off the kids and go back to sleep until lunch. I might do a grocery run or make insurance calls for whatever latest billing errors that I’m going through, and then I nap until it’s time to get the kids.  In this time I don’t do anything I want to do, even though I have the time for it. Even when the weather changes, my habits stay the same. I don’t write, I don’t play guitar, I don’t take walks, I don’t play video games or watch TV. I live 2 seasons like this. I stay working out for 3 months, and then leave in early June.

We try to squeeze all of this into a mid-June 20 minute doctor appointment with my oncologist.  My scans are good, there isn’t much to talk about from a cancer-perspective. He deems this a “quality of life” issue and says he will refer me to an endocrinologist. We spent the summer waiting for a phone call. The phone finally rings in July and offers an appointment in early August– and our hearts sink. That’s so long from now. I’m on a waiting list for cancellations. I sometimes call to just if there happens to be an opening. There is not.

My phone rings in mid-July and they have a cancellation at the end of July– if I’m interested. I was drained and cynical at this point, but this appointment would be more helpful than my body could anticipate .

Raymond K. Hessel

Make the change before it’s too late

We all have a bucket list (maybe only in our heads– partially complete). A compilation of things we’d like to do, places to travel, and events to experience before we die. Or we have a path we’d like to take that seems too dangerous to go down. I’m not talking about quitting your job to “pursue your passion”. That’s mostly fairy tales. But there is something different we want to do, something that we want to try out. Usually it’s difficult and requires a lot of time and effort, and walking away from something else you’ve spent years building.
When it comes actually deciding when to take that chance, the time we tells ourselves all too often becomes “someday.” But something happens in our lives where it becomes too late to change course. Maybe our brains become hard-wired to our daily routines, maybe our system of values ages and stops allowing ourselves to take lifestyle risks. 
It’s a common thought experiment to wonder what you’d do with your life if you were given a terminal diagnosis or were told you had cancer. What would you do with the remainder of your time? What would you change? At the end of the thought process (most of you) can say, “Well, thank God I don’t have cancer.” Hat-tip to Ryan Holiday

Thank you- An Ode to the Caretakers

Thank you

Thank you, Thank you, Thank you, Thank you. Similar to my recap of the book Thanks a Thousand: A Gratitude Journey.
I don’t think it’s an exaggeration to say, I owe you my life as I live it today.

You’ve been so kind and generous,

I don’t know how you keep on giving….

And I never could’ve got this far without you.

Natalie Merchant, Kind and Generous

One thing I don’t give enough credit and thanks to are the many people that have served as my caretakers on my journey.

First and foremost I’m thinking of my wife and the mother of our children, Paige. Not only has she taken care of me and been by my side this whole time (even sleeping in hospital chairs so I won’t be alone). It’s also her gainful employment and health insurance which has allowed me to seek out and obtain the care I’ve needed to get to where I am today. I keep telling her to mention to the higher-ups at Anderson University that I’m ready to get my AU Trojans tattoo wherever they deem appropriate. I’m also thinking of my parents (who are always there to offer any type of support they can) and every healthcare professional who has stuck me with a needle, brought me food, administered scans, and dealt with my seemingly endless lines of questions that I write down beforehand and write in my journal before each appointment. The doctors and nurses now know to yield the floor for my many questions after their initial introductory remarks / results updates. I’m also thinking of friends and family and my church, of course, especially my friends that have taken up the duty of childcare during my surgeries and recoveries. First, in a non-COVID world (first craniotomy in 2019) and then, in a COVID-world (2nd craniotomy in 2020). I have had friends and family send practical and thoughtful gifts, I have had friends send seemingly random gifts that I’ve fallen in love with (for example, a vinyl record player), and I have had folks that are almost strangers reach out to offer material and emotional support. It’s been uplifting.

It’s reminded me of when we had our first child and then outings somehow became different. When you take a baby / child with you, Suddenly you’re not a number in a line anymore but folks go out of their way to give your kid a sticker or draw a smiley face on your receipt for them. It restores your faith in something just a little bit more.

And I feel like my experience has been like that. Folks do just something a little bit extra and it goes along way for me and our family. At the beginning, people do stuff for you, like get you a cup of coffee or a gift card for some take-out, and you think, well– when I get to the other side of this, I’m going to do something for them to show them how grateful I am and it’ll help them. But then so much happens, so much is given to us, there’s really no way to keep up. It’s grace in motion. There’s no return gesture to cover it, no perfect thank-you card, post to Instagram or emoji that comes even close to covering it. What I’ve learned is that it’s grace, and just like the divine grace we’re all given, you can’t do anything to earn it or say thank-you (even though we’ll still try both because we’re human). I think the best you can do is pause and reflect and meditate on it. Use all of those moments of grace and try to help someone else when the time is right and when it’s not forced. We’re still human and we’ll still put this some in our ledgers and somehow try to balance it all out in our heads but there really is no balancing. In a sense, we’ll always be in the red. But that’s okay. There’s something so stubborn (or maybe it’s smug?) about us, that we think we can somehow brute force our way into returning grace. And we really can’t. The best we can do is to sit there and meekly say, “Thank you.” And let that be it. So: Thank you.

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.