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 .

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”

Jim Allison: Breakthrough

Jim Allison, image from PBS.org

If you read one book, watch one movie or show that I talk about on this blog: WATCH THIS DOCUMENTARY. You can stream on a PBS app or you can just click here.

This past Monday (4/27) PBS aired a documentary on their Independent Lens program. Jim Allison: Breakthrough serves as a part biography and part history of cancer treatment. Although the documentary is an hour and half, it feels like it goes by in 20 minutes.

Jim Allison is the reason I’m alive and well today. His work led to the development of the drugs used for all immunotherapy treatments. He spent half his life chasing his own theory on effective cancer treatment and then finally found an indisputable medicine using the body’s own immune system. But just because you have a cure for cancer doesn’t mean it gets made and distributed. Allison has dedicated the rest of his life (not just professional career– his life) to making sure that this treatment got developed and distributed. And it was quite a war.

One of the things this documentary shows to you is that even with incredible breakthroughs and solutions, it still takes the mechanism of the business world to implement those solutions and put them on the streets. Many times businesses don’t have the courage to do it. It’s much safer not to spend the money, not to take the action, not to incur the possible liability. We live in a very real vetocracy. It’s a system that nearly kept one cure for cancer from getting to cancer patients! Jim Allison, for very personal reasons, refused to let his cure die on the vine. And he wasn’t alone– there had to more champions within business to make this happen (specifically, Dr. Rachel Humphrey).

The documentary also features someone who was diagnosed with melanoma in her 20s in the early 2000s. This was before immunotherapy had been accepted as a possible treatment for melanoma. Despite conventional cancer treatments, the tumors spread to her brain, leaving her with metastatic melanoma– my same diagnosis. Through various twists and turns, she becomes one of the first patients to undergo immunotherpy. Her tumors disappeared. Completely.

There is a chance moment when her doctor gets to introduce her to Jim Allison, the inventor of the treatment that cured her. In recounting that meeting, she says these words:

I just couldn’t talk.

How in the world are you suppose to adequately thank somebody, standing across from you, that you are 100% positive that without them you wouldn’t be here?

There is no “thank-you” for that.

Sharon Belvin

Those words touched me. They have a lot to do with what I write about in this blog. This sense of “There is no “thank-you” for that.” I’ve called it grace. Maybe it’s something that can’t be contained in words at all– something ineffable. But it is real. I’m living proof.

Again, WATCH THIS DOCUMENTARY! Look for Jim Allison: Breakthrough on PBS’s Independent Lens series, or click here. You’re in for quite a ride. Jim Allison does not project the scientist-curing-cancer vibe you might imagine!

Love in the time of COVID

Photo by James Emery, creative commons licensing

I am grateful for my cancer. Cancer has taught me to focus on the moment. No matter what happens to me, nothing can take away the moments I’ve lived in. It is impossible to fully take in a moment without love. Without love there is no inner peace, there is no stillness. Can you imagine fully appreciating a hot shower, a quiet walk, or looking out at the stars without love? 

I’ve read that 99.9% of our universe is composed of empty space. But I don’t think so. I think it’s composed of love. It’s hidden in plain sight, right in front of us, waiting to be taken in. 

Yes, there is also great suffering. But suffering can show us how love unfolds. It can show us the infinite dimensions of love.I don’t know why we need suffering to really see it, but we do. Suffering forces us to focus of the moment with sharp resolve.

There was once a man who was running in through the jungle, chased by a hungry tiger. After breaking through a clearing, he came to the edge of a cliff. The long fall into the river below would be fatal. The tiger forced the man to stumble and fall but he grabbed onto the edge of the cliff with his hands. The tiger was relentless and started for the man’s hands. The man saw a branch growing from the face of the cliff just below him and he managed to grab onto the branch with his hands. Dangling from the branch, the man saw a plump strawberry had sprouted out of some greenery on the branch. Hanging on to the branch, he reached out and grabbed the strawberry and popped it into his mouth. “This strawberry tastes delicious,” he said.

Continue reading “Love in the time of COVID”

Life Post Cancer Treatment and Life During COVID

I remember the first moment we decided that we were going to shutter-in because of COVID. It was March 13th and I ran some errands. I was at Publix and I felt like I knew a secret no one else did– I loaded up on food and milk to get us through what I hoped would be a couple weeks (it wasn’t). It was a Friday so it was easy to slide into a typical weekend routine and just tell the kids we were eating at home and not going out for meals. 

Then we woke up on Saturday and it’s been the same day ever since. No work to go to, no school for the kids. 

Continue reading “Life Post Cancer Treatment and Life During COVID”

Stillness is the Key

I haven’t read the book yet, but I pre-ordered it and it arrived on my doorstep on Tuesday. I am so excited about this book.

Some background. I found Ryan Holiday on a podcast when he released Ego Is the Enemy. The podcast was simply a sample of him reading a selected chapter, entitled What’s Important to You? It tracks the post-Civil War careers of Ulysses G. Grant and William Tecumseh Sherman (known to us as General Sherman). While Grant was swept along into politics, eventually becoming president, he was out of his depth and did not know when to say no or how to be comfortable with himself. He accomplished little in office, and then was caught up in a Ponzi scheme. He finished his days trying to write his memoirs in order to leave something behind for his family.

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The Kingdom of Heaven is Within You

I’m excited to share that my PET scan came back with phenomenal results. The melanoma has not spread anywhere new. Of the existing 6 tumors that lit up previously, only 1 tumor showed up on this PET scan, registering at 5mm (down from 1.2cm in May). 5mm is also the smallest measurement a PET scan can pick up. This is the nodule in my right lung. I don’t have pictures of the scans to share with you, but I will tell you that the May PET scan of this nodule and the August PET scan are night-and-day. My oncologist even remarked that they wouldn’t even notice if they weren’t looking for it. The term “remission” was used (more on that in a bit).

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What to do or say when your friend is dealing with cancer; or, What NOT to do or say when your friend is dealing with cancer

So this one’s a bit of the blog post and leaning towards a bit of the “My Journey”, right? Well, we all know both of those distinct sections are going to merge together sooner or later, that’s where we’re headed, right?

For my birthday, Paige got me a quick-read book entitled Everything Happens for a Reason and Other Lies I’ve Loved by Kate Bowler. I hadn’t heard of it but after reading a blurb about Kate (35 years old, married with an 18 month-old son when diagnosed with stage IV colon cancer) I raced through the book in two days. 

Kate Bowler also has a very active website, articles, podcast, and book club. She is a divinity professor at Duke Divinity School who has specialized in the prosperity gospel. [An aside for my a-religious friends. Prosperity gospel focuses on receiving rewards such as money, health, or success in exchange for being a faithful Christian, or in some crude cases, in exchange for money given to a church. Thinking televangelists. It’s the worst example of a very conditional arrangement.] I feel very drawn to Kate’s work and her perspective throughout her diagnosis, surgery, and treatment. Not that she would take me up on it, but I wished I would’ve been familiar with her work when Paige and I went up to Duke Cancer Center for our 2nd opinion consult so I could’ve asked to meet for coffee or lunch. Stage IV besties probably isn’t a thing but it would be fantastic to have a conversation with her.

Continue reading “What to do or say when your friend is dealing with cancer; or, What NOT to do or say when your friend is dealing with cancer”