Despite what you’ve heard, stories don’t have endings; no story does. And the story of my stage IV lung cancer with brain mets has no ending. In Holllywood and in the publishing world, stories have an ending, you know they say all stories have a beginning, a middle, and an end? That’s a lie. Do you remember your beginning? Me neither. Do you know how it ends? Me neither. Which part is the middle? How the hell do you know? Do you know if there’s a heaven or if everything ends with death? You believe, but you can’t know. So you don’t know how it ends, do you? My mom died two years ago. Was that the end of the story? No, I think about her every day; her story goes on. This story, my story, has no end, and I have no idea, cannot have any idea about how the story will go. That’s the pain and the beauty of it, for all of us. We can’t know, we don’t know. We never will.
This is a story about how at the end of June this year, I found out I had stage IV lung cancer that had spread to my brain and throughout my body. I had to have an emergency brain surgery to remove a large 6 cm x 6 cm tumor, and then a few weeks later had to return to the hospital due to brain infection, and had four more brain surgeries to clean the infection. Now I’m at home, two months post initial diagnosis. I’m on a targeted oral chemotherapy which seems to be working, thank God, (meaning the tumors are shrinking) and the infection is by all accounts going away, although we don’t know for sure. I am getting stronger but life feels very tentative still—walking on thin ice. I am hopeful but not sure of anything.
So when you find out you have cancer throughout your body, including inside your brain and lungs and liver and bones, of course you think about how your life could be cut short, very short. And that causes grief, grief that is worth thinking about.
Where does the grief come from, I ask myself? From changed expectations. I speak to myself: you wanted to live about as long as your dad? And your mom? To about maybe 80? So that you could accumulate those experiences and days like you saw/see them have? Was that it? To be around your grandkids, to see them arrive, see your daughter Bella turn into a parent, see how it all lights up for her how everything she knows how about taking care of kids comes from you and her mom, see it all take shape like you know it will, have Bella and her husband over for dinners, take them to Jazz games, get to take them to do fun things, fun for them, fun for you and Kim.
Those aging experiences of older family members are familiar to you and they seemed natural and inevitable, the types of things related to aging but that can be endured okay, like hip surgery, more pills, moving slower, the accumulation of days on the earth, an effortless accretion / accroitre of time and days, sunshine, birds, squirrels, trees, sunsets, television shows, things witnessed, newspapers printed and discarded, days and days going by under the sun; those days were your expectation, they were your right.
With you and Kim, you could do anything together, you could work until the end, you could stop working, you would spend all those days side-by-side wherever you decided, and wherever you decided was still ahead, the factors not even known for places you could live or vacation in those days to accumulate. You would take care of each other and even though you are a decade older you would get close enough to the finish line to hand her off in good care to survive fine without you for another decade or however long she had to go solo at the end; you’d figure that out together maybe through your choices of where you lived and if you had a community or neighborhood around you to be that network and support for Kim.
Your dad’s dad lived to 86, your paternal grandmother to 101, your mom to 76, your dad is 78, the Knell grandparents both made it into their sixties, along with pretty much every relative you’ve ever had but Uncle Mike made it that far, but you’ve already outlived Mike by far.
So that’s what you wanted and expected, to live to 80 more or less, that was the idea, nevermind that at 80 then what, you would still be alive and have new expectations just like Dad at 78 has plenty ahead of him and plenty to offer, so 80 is nice, but it’s made-up of course because once you get to 80, you want to get to 90. And it’s still not nice for those who live on, even if you die at 80 as their husband or their dad, it still sucks for them, so you weren’t getting out of them feeling bad for you, because man, they love you, that’s the price. The price of love is grief.
Why did you think you got so many days and what did that mean?
Was it a feeling of days underneath you, passing by forever, a warm river of days underneath to prop you up, feeling of being on top of time, time passing but you floating on top, staying on top of it still, managing time, accumulating time, time accrued to you somehow, to your benefit, time attributed to your personal life and identity, time that people would associate with your person, as in, behold that old man at 80 and the time he has lived and brought into his being.
With my best friend Kim, doing the time together, holding it up between us, four hands holding up time while it pushes past beneath each day, our hands resting on top, stable, a structure almost on top and across time, that others could witness, as in there’s the bridge they made across time, as in they defeated time by not sinking into it but staying on top of its accumulations.
In other words, a fantasy, a sense of permanence. It was always a fantasy—because that’s not how it feels even when you don’t have a bad diagnosis, that’s not how it has felt so far your life. Since January when you were tired and depressed because of the brain tumor you didn’t know was there, you thought you were becoming an old man, changing too fast, was it a cardiac problem, depression, breathing problem, a glitch in the system, the programming wouldn’t support 80, so already you were seeing, being told there was no such accumulation of days ahead as you might want, but instead whatever would be. So that’s what you had before you knew you had lung cancer, you had already questions about how long you could work or would want to, in other words there was no guarantee that the passing of time as you say you wanted it would be according to the way you now say you might have wanted it, instead let’s say some of those years could have turned out unpleasant, in other words you have, you have had a fantasy about an aging process that was never your experience or bound to be, you already know that all dreams will be circumscribed so that daily life is played at most one day at a time, sometimes hours at a time, and as lived it’s not an accumulation at all how you experience it, but a few hours of this or that, struggle, mindlessness, occasionally some feeling of purpose once in a great while but not every day, so that the way of life was always paying attention to the minutes in front of your face, because the rest wasn’t real. But still, staying attentive and present for 80 years instead of something less, yes, that’s real, maybe you don’t get to make it to 80 anymore, you probably don’t let’s be honest, what if it was 5 years, which is the lie, it’s never going to be say 5 years, that’s not how the time is given to us, it’s just given moment by moment by moment, you don’t get enough to carry ever, you never did.
Anyway, what’s the difference between a day of life when that life ends 30 years later or 22 years later or 7 years later, that day is still the same day, right?
Eight weeks ago today I woke up at the hospital after brain surgery. Eight weeks ago today they removed a large nectarine-sized tumor from my brain. It was mostly cyst fluid with some tumor material around the edge, that was pushing my brain something like 6mm away from the midline, and causing all kinds of problems like cognition and memory problems and a feeling of fatigue and depression and a bunch of other crap like spontaneous vomiting and diarrhea and constipation, that weren’t actually “real” but were created by the brain. So all that stuff from January to June was caused by the tumor, you weren’t really depressed or turning into an Alzheimer’s patient, you just had this massive throbbing tumor in your brain, that’s all.
So I wake up in the hospital and have obviously just had brain surgery, an actual craniotomy, where they slice open the skin and tissue, peel it back, then remove part of the skull, then slurp the cyst fluid from the brain with a vacuum, leaving a hole, and then using some type of brain saw to remove the tumor from the cavity, plus before that, you know, all the swelling and trauma of the brain with cancer inside of it, plus I have another good-size tumor as well (golf ball?) and a bunch (nine) of small ones, when I wake up in the hospital I am in between worlds. I am a traveler from a place far far away, infinitely far, I am the person still before the brain surgery, the altered person living inside of Scott, and I am under the jurisdiction of that other world, just traveling to earth as a temporary visitor to go in and out of Scott’s body as I please, but ultimately I am not Scott, I am another person, let’s call him Simsi, who is a fictional character from a Thomas Swift novel written long in the past, and the fate of Simsi is directed by the Swift novel, which for some reason has yet to be published to the world, so that Simsi is my identity to be played out, and so Simsi is really the one waking up in the hospital bed, and hearing the nurse’s voices and Kim’s voice, and Simsi is wondering why he needs to respond to the commands in the earth world, because this is not Simsi’s world. So as Simsi I am wanting to travel off to the other world where I’m from, some world of light and infinite white lightning freedom, I feel free and I want to fly there because Simsi knows that if he doesn’t take his chance now, then fading and turning into Scott is going to have a lot of work and temporal suffering associated with it, and in that moment there is no superior claim that Scott has on the identity or body of Scott than does Simsi, in fact there are four or five identities wrestling in Scott’s body, Simsi, then a sort of spiritual Scott, the identity or idea of Scott as a spiritual being as in from God, as in from eternity, with some identity prior to earth life, but I can’t feel that, it’s just an idea, then there’s the idea of Scott as an organic being, carbon/oxygen etc., similar to kelp or dirt, ashes to ashes dust to dust, and then there’s the idea of Scott as a baby or a person with a disability, a large body in a hospital bed whose brain is broken, and who is under the direction of his wife Kim and the care team. These characters are all there in my identity and I am moving between them, negotiating inside whatever my true identity is which person I was aligned with. So there was no fear because Simsi had the same claim as Scott did, Simsi could take me away to his planet of light, and that was just as valid as waking up in that bed and listening to the nurse. In other words, the idea of death caused no fear.
So this lasted for four days and five nights, utter freedom, untethered. The idea that to be dead was just as valid as being alive, since I wouldn’t be dead, I would be following the dictates of another world where Sumsi was from, so that in fact becoming Scott in the bed was a sort of betrayal of a truer identity of Simsi and what he wanted to do which was to fly around to his infinite planet of light, so freedom in the idea that no world and no rules had a hold on my identity and everything was available and negotiable between the different possible identities, with no fear or grief or burden, the idea of being part of a traveling wave of light if I wanted as being a choice as good as coming into the hospital bed and drinking my boxed apple juice, with all light and time infinitely present, time not moving, with each choice complete open in infinite directions and dimensions, without expiration. The very question of identity up for grabs, who am I, a particle of light, an element of earth, a spiritual being, a physical being with an earth identity as a husband/father/lawyer, a disabled person or child with an impairment, being taken care of.
I’m not saying just that there were no rules that applied to me, I’m saying there were no rules, I could drift off as Simsi to become a particle of light in the universe, that was valid, justified, legitimate, there was no claim from a god or earthly people more legitimate than that.
One night at home soon after leaving the hospital I said goodbye to Simsi as I felt I had decided to live in the material world. This caused actual sorrow.
And there are these moments of total bliss, total gratitude, total explosion inside of light, a feeling of utter infinity of light inside of my mind, an explosion of gratitude for this experience, to know that Kim vouched for me, to save my life, that she never lost faith in me, that she knew there was a glitch in the system and not that I had changed as a person, and to put her own life and energy on the line for me, that is something that was given to me that I will always have, that she was my true advocate and would go to the gallows for me. Anyway, that was new information I had, when I woke in the hospital, I felt like I would give my life in exchange for Kim’s life, and she would do the same for me.
You meet amazing people in the hospital. Here are nurses who dedicate their lives to compassionate care of patients. They come into your room and interact with your mind and body. That is their actual job, to interact with and help the human in the bed. Think of it. They are not on their cellphones, they come in, wash your body, give you pills, clean your sores, dress your sores, touch your body to see how it’s doing, talk to you, give you advice, tell you what’s going to happen and what’s going on, they make sure you are fed and warmed and clothed, they keep you alive and comfortable, on a one-on-one basis. It’s an amazing profession, probably the most amazing profession the world around could offer. Think of it--their job is to comfort you and take care of you, to show compassion. That is their literal job and training.
I met a nurse named Sam, was from back east, suddenly decided to come to Utah to the outdoors to change his life. He was in nursing school, just starting, and so wasn’t finished as a nurse but was working as a nurse-in-training, his fourth shift with me. His desire was to finish nursing school and do travel nursing all around big cities around the states, to travel and make extra money. He wore these new big green basketball shoes that he was evidently quite proud of, his outfit pressed and straight, his hair very straight and kept. At one point I went to the bathroom and flushed which he didn’t like – he thought I was supposed to save it for measurement. So he decided to check my bladder for urine build-up, but he couldn’t find my bladder with the ultrasound and kept gravely announcing to me that he couldn’t find my bladder. After a second try, he abandoned the effort and a different nurse or nurse tech came in, and she found my bladder. It was funny that Sam was unsure about my bladder and what a surprise that would have been for me after brain surgery with a catheter to find out I had been bladderless all along. So obviously you have these people like Sam who have dedicated themselves to the profession but are also very much new and learning themselves, and those are the types of interactions constantly taking place in the hospital between the patient and the nurse.
There were so many wonderful nurses who saved my life, kept me sane, comforted me. Erin, Alyssa, Jada, Annada, Lauren, Irina—I love you for taking care of me. I can’t remember all the names—including some names doesn’t mean I’m excluding others. Irina wheeled me into surgery, held my hand while the anesthesia was starting and told me everything would be okay.
What my wife Kim did for me was profoundly important and central. From January until the ED, I had had severe daytime exhaustion without explanation, unable to stay awake during long sections of the day, and towards the end some difficulties carrying out daily functions. Let’s just say I was acting weird and then super weird. There’s a narrative that could have gone differently, that I had changed, or I was a difficult person, or was portraying a TV character, or becoming an asshole or something, or even just the SAD or depressed narrative – what’s wrong with Scott, why can’t he snap out of it? Where is he? Will he come back? She said it was like talking to someone through layers of Vaseline. She could have reached other conclusions. Was I doing something weird like drugs? Was I faking a fugue state like Walter White? Was there a second cellphone? Was I milking it? Was I exaggerating? What was taking my attention? But she didn’t do those things, she believed something was wrong, medically, and was trying to figure it out. She was on the forensic trail, and she did figure it out, and she did get me to safety, and in that way she vouched for me, she put her reputation on the line, she put her credibility on the line, she put me first, and what a feeling to be seen like that. And then she put in the work, all day and evening at the hospital, doing the work of worrying about me and taking care of me.
I just feel gratitude and infinity and wonder and lightness in my heart. The breath of life feels like the center of all life. To breathe is to live, to feel your own breath, to hear it, to smell it, that is life, the lungs opening and closing and spreading the air all around, that is life, and every breath is magical and powerful and I can feel the breath of life sustaining me, and my mind feels infinite and free and joyous.
I have so much love in my heart for the experience of being alive. To be able to breathe, to eat. Kim’s mom just made us a wonderful dinner of hamburgers with watermelon, shrimp salad, peach cobbler. It filled me with happiness. The cobbler reminded me of being a kid and eating my mom’s cooking in the summer, the peach cobblers or rhubarb cobblers she would make with ice cream. Literally the peach cobbler today filling me with happiness and comfort and fond memories.
So how do you be patient when you have so much time and are waiting to find out more from the doctor what the treatment alternatives are? Well, for one, time is a gift and why does it have to be full all the time, why isn’t it OK to just have huge chunks of time with nothing to do, how come that isn’t OK. Maybe there are things we learn with unscheduled time, things we need to learn, from just waiting and being patient, maybe that’s something. Or to quote from a great self-help author whose name I don’t recall, but who has been helpful to me along my journey, especially 20 years re anxiety, who do you think you are to control the universe or even your own life? Who do you presume to be that you know anything about anything, who do you presume to be to know what you actually need in this moment? Who do you presume to be to think you know what will or what should happen or what is the way things must unfold? And who are you to question what will unfold. There is peace in acceptance there is peace in the present. Think of the best parts of yourself, your character, what gives you depth and joy, and where does all that come from? Did you plan it out? Did that come from planning or certainty or did it just come with the territory and all the ups and downs?
Who do you presume to be to know the right number of days to live upon the earth? Who do you presume to be to know the meaning or purpose or pattern of your life? How would you attain such information? Why would it flow to you? How would you possess it or understand it?
Why do you presume to have the capacity to receive such information?
So a few weeks ago was a big day. Dr. Akerley’s office (the medical oncologist) informed us that I have the ALK mutation, meaning my lung cancer should respond to a targeted treatment, which is specifically going to be the oral chemotherapy pill Alecensa (alectanib) which is manufactured by a Swiss company LaRoche and sold in USA under Genentech label, originally developed in a Japanese lab, as best I understand. This is great news – something like 3% of lung cancer patients have this mutation pathway that responds well to treatment, and maybe only 30% of lung cancer patients respond to any mutation pathway with targeted treatment, so I am very lucky and blessed. I hadn’t allowed myself to believe I would qualify for the targeted treatment, predicting maybe immunotherapy or chemotherapy for myself, so this news is a big positive change, the idea that it might actually work to manage the tumors in my lungs and brain. Obviously it has to work and I have to go in there monthly for life to check, and eventually it will stop working and that will be the end of me, but now I have a chance to live to a point where I am beyond waiting day-by-day for the next thing, and can get into living month-by-month or even in six-month-chunks and so forth. As I understand it, my body manufactures mutant cancer DNA and the idea of the targeted treatment is that it goes in to the broken DNA and recognizes is as a mutant cancer factory and stops feeding protein to that cancer. So unlike chemo the drug is not poisoning your whole body or anything, it’s really focused on the cancer. Having said that, there can be side effects like fatigue, exhaustion, diarrhea, vomiting, increased cholesterol, edema, weight gain, so it’s a very serious drug and one I will take for life, so it’s not a search for a cure or anything, it’s really managing a chronic condition for as long as possible. Dr. Akerley will remain my main doctor in terms of checking liver function, managing the side effects of the drug, so eventually my visits with radiation oncology, neurosurgery, neuro-oncology, will drop off to where my main interactions are with Dr. Akerley and then getting labs and scans.
When we got this news my heart went out to all those who don’t get the news they want. I think of them and their loved ones and their families and my heart goes out to them that they may have comfort and success in their proposed treatment.
So that was a day of joy and celebration and utter gratitude, along with wonder and exceedingly flighty thoughts of the heart and mind.
And the funny thing is you wind up where you started because the information, good or bad, means you are still in the present, you don’t know what will happen, you can’t know, you can’t presume to know, you don’t want to know, and even if you did know about the cancer, you might get run over by a bus tomorrow, so with whatever comes to us, we stay in the present and we manage it moment by moment.
I’m reading all the time now. I love it so much. It gives me so much comfort. The words are so delicious in my brain and my soul. I read “Demon Copperhead,” once of the best novels ever written, a modern Appalachian update to the David Copperfield story, but probably an even better more coherent novel than the original. Heartbreaking. I’ve read three novels by Ryan Stradal who writes family stories about kitchens and restaurants in the Northwest/Midwest. There’s a British author Richard Osman who writes these wonderful murder mystery books and I’m on the third one already – very clever writing and characters. I am re-reading Guns of August, probably the greatest history book ever written, re: WWI, utterly fascinating, an end of the age of kings and the beginning of the age of total war. I am also trying to tackle Les Miserables and the writing is so beautiful it just carries you along. It’s such a pleasure to read, I don’t remember ever enjoying reading this much.
What does it mean to have cancer? Do I have cancer? Isn’t cancer this awful, terrifying thing that ruins your life? And I have this wonderful disease that has brought so much joy and wonder and immediacy to life?
There are so many things that have sucked bad and so many beautiful infinite things. If I had to give up the beautiful things to remove the suck, I wouldn’t do it. I didn’t think I could withstand five brain surgeries, but I did. At some point you just endure whatever is in front of you. We all become our own hero by doing the work that needs to be done. There are a lot of heroes out there, reading this, people who have faced physical and mental illness in themselves, their children, their close family members, people who have faced impossible financial conditions, difficult family situations, all kinds of things. People are tough.
The hardest part, the most grief, comes from the idea that there are people I take care of, Kim and Bella. How would they go on without me? I feel like I have an obligation to them, to survive, and for a long time. It’s too painful to think of their world without me? Is that selfish to presume that people need me? Or is it selfless? I don’t know. I really don’t. It’s too painful to think about. I can’t go there.
And it truly has sucked at times, especially the problem of using the bathroom in the hospital. In the ICU, you need permission to use the bathroom, and it’s not private. Usually it's you and three helpers going to the bathroom. If you are lucky, only one person is watching. So I got good at going to the bathroom in front of other people. But it’s still hard to go number 2 in front of people. One day they decided I had to stay in my bed until I got a special helmet, because a bone had been removed from my skull, and it would be very dangerous for me to fall. I had to go to the bathroom very bad, but they said I couldn’t get up until the guy with the helmet arrived. He was in Ogden and driving to Salt Lake. So I tried to go pee in a urinal but there were several people watching and I couldn’t do it. I had to go number 2 really bad. The nurse said I could put on a pair of “briefs” – very large underwear sized for an elephant – and then I could just make a total mess of myself and then they’d clean me up. I couldn’t do it. Can you imagine totally crapping yourself? So finally I used the bedpan. If you didn’t know, a bedpan is like a small cereal bowl, so when you use it, it fills up quickly and spills all over your body and bed. It’s very uncomfortable. Then I needed a second bedpan because the first one was full. Meanwhile the guy with the helmet is stuck in traffic. Finally he arrives three hours later, they give me the helmet and let me sit on the toilet and finally relief. I don’t think I could do that again. Hopefully I won’t have to but you don’t know. I know a lot of people with worse medical problems than me, and I know a lot of people my age who have never really had serious medical problems. You never know what’s next.
How does this story end? I don’t know. Nobody does. The story just goes on and on.
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