I have always preferred harder surfaces for sleeping, so I have a tatami bed. I would just sleep on the floor as it’s cheaper, but people have a pretty strong reaction to adults sleeping on the floor. Also, sleeping on the floor is not exactly conducive to a harmonious relationship if you happen to be in one. I’m guessing there are not many American couples that choose the floor, or a tatami bed, as a sleeping surface.
Justine and I never agreed on a sleeping surface. She preferred a bed that was incredibly soft. A soft bed just hurts me. I often wake up with cramps in my legs. We did all kinds of things to accommodate both needs. A piece of ply wood under the mattress on my side. A foam egg crate cushion under the sheet on her side. One of us was always slightly uncomfortable.
In 1997, when I moved back to Houston from Boston and got an apartment in the Montrose. I slept on the floor. It was awesome. My girlfriend at the time, Carol, followed me in the move as we were going to give it another shot. She was done with Boston as well.
It was a condition of her move, “I would like a bed please.”
I laughed, “Okay. I will go find one.”
In 1997, you could find a new queen size bed for $99 in Houston. This was the most uncomfortable bed I have ever owned. I could feel the wires from the springs poking me in the back. It was ridiculous. Layers of egg crate foam and extra blankets made it only slightly more bearable. But I have to admit that an expensive mattress isn’t much more comfortable to me.
No opioids. No benzodiazepines. No mattresses. Apparently, I am a human that hates comfort. Don’t even get me started on blankets and clothing textiles.
Hospital beds are made by Satan himself. He has a manufacturing operation in hell and churns out thousands of these torture devices every day as he laughs at the suffering of the sick. Hospital administrators must be selling their souls for these things. I don’t know what they are getting in return, but it isn’t a bed.
At first glance, it seems okay, but… It is too short. I am only six feet tall, but there is a handrail at the feet. I am always pushing myself up, but best case scenario, my head is two inches from the backboard, I have an inch of clearance at my feet. I wake up constantly with my knees up or my feet draped over the top of the rail. There are three controls for contour, one for the head, one for the middle, and one for the feet. If you press the up control on the head, the contour for middle and feet change at the same time into some recliner configuration. I am always raising the head, then lowering the middle and feet so they are flat. I don’t mind the mattress that much, but that means that 99% of people feel like they are lying in a spear trap. A bed of nails would be an improvement.
Maybe hospital beds are intentionally uncomfortable so that you’ll get out as soon as possible. I don’t think they need extra encouragement. It is not fun to be a patient in a hospital. I would think they could make the bed a little more comfortable.
Some of the people that know I have a tatami bed have speculated about how practical it would be to go home to it after surgery. Their concern even had me worrying. It was unnecessary. Many aches that I would attribute to post-op were corrected after one night.
In case you don’t know, a tatami mat is Japanese flooring made out of tightly woven straw. Traditionally, Japanese people slept in a room with these mats covering the floor. They are only slightly softer than wood.
There are companies that make bed frames for tatami mats. They are not cheap, but they are cheaper than a traditional bed frame, box spring, and mattress. A tatami bed is just an expensive way of raising the floor fourteen inches so that my friends and family won’t make those pitying sounds with their mouths when they see a sheet spread out on the floor with some blankets and pillows. It’s also a great way to make sure I don’t end up with any women sticking around for too long. I don’t necessarily have to worry about that, but it is nice to have a backup excuse to make myself feel better.
All of this to say that it was nice to be at home sleeping in my own bed.
Many students that attend Berklee College of Music do not graduate. I don’t know why that is the case. I don’t even know why I stopped going. I only had a year to go. It would be nice to have the degree. It doesn’t seem to have held me back, but how would I know.
I chose music school because I am a musician and I love music so much that it made sense that I would want to do music all of the time. When I made that decision, my vision was that I would be making music that I wanted to make. Music school was an introduction into all of the ways that you can make money as a musician. Teaching, music therapy, commercial music, studio work, live musician, sound engineer…
Most of the options proposed didn’t involve just sitting down and making music that I wanted to make. That isn’t what music school is for. Music school, maybe Berklee specifically, is for teaching music and finding a specific career path. That focus makes sense. Education costs money. So does life.
I was confused from the moment I got there. This wasn’t the reason I got into music. I wanted to write, record, and perform music. I kept trying to fit myself into one of these defined roles, but I couldn’t see myself in any of them. Eventually it occurred to me that the better option was to not be in music school at all but to pursue musical goals. Unfortunately, music schools put you into debt, so I had to go to work instead of pursuing musical goals.
I returned to Houston and taught myself how to program so that I could make money. This involved getting some computers and an apartment with no furniture (and no bed). It was the 90’s so I had to learn to program from books, most of which I couldn’t afford. So I would read the books at the bookstore. Then I’d go home and try it out.
I landed my first full time programming job in 1998. Because it’s Houston, I found my way into the oil and gas industry. For a long time, programming in oil and gas was deeply satisfying. Engineering and geology applications are challenging. I had a sense of purpose as applications we developed increased efficiency, and made the industry safer and cleaner. I was able to apply concepts that I learned in sound engineering. I had a lot of fun. I met a lot of great people.
When I first got into programming, I had a fairly clear vision of what I wanted to do. I was tired of being in the local band of the month club. This is a club with rotating members. I would get a small group of people together. We would play to see if there was any chemistry. Then we would start writing. Then we’d finish a set. Maybe play a few shows. Then somebody would quit. Before we would be able to replace that person, someone else would quit. Then I’d start all over again.
I was really tired of this cycle and wanted to get out. I just wanted to make some money to get some some equipment and fund my own projects. So I taught myself to program. My backup plans tend to be someone else’s dreams. It was a little naive to think I would just make money and then go make music. I was tired of being broke, but it was more than that. I was nearly thirty, and I just didn’t like not being able to make any plans beyond the next paycheck. I also knew that I eventually wanted to get married and have kids, so I compromised a bit. Totally worth every minute. My kids are the best. My relationship with Justine worked until it didn’t.
Then one day in 2016, I just couldn’t do it anymore. I needed a break. Granted there were a lot of other things going on in my life that led to some big life changes. But I definitely feel like the initial catalyst to those changes was my inability to continue working. I needed a break. I let a contract run out, and then I took some time off. I started making a movie while also making some money with a mural and mosaic company that my friends owned. Then Justine got sick with Lupus and the divorce started and the whole thing unraveled.
I went back to work, but I was still not into what I was doing. Having worked in the corporate world for a good chunk of my life, it doesn’t seem necessary to be particularly engaged to collect a paycheck, but this is a skill I don’t seem to have mastered in life. The art of ‘mailing it in’ at work. I don’t know why it is so difficult for me to just show up and do a pointless job when it seems so effortless to so many. Maybe a lot of people have this same problem, unable to find any purpose in what they are doing at work, but they are able to hide it better.
Although I feel like what I am doing no longer has any purpose, I am still good at what I do. I like the people. Sometimes I like the project. Sometimes I like the company. Sometimes I like the location, the food, the chairs, the money…
Cancer gave me a sense of purpose. I know that’s a weird thing to say, but no longer having a vocation really made me crazy. I showed up for work, but I was just not feeling it anymore. I could easily get from ‘tell me about your project’ to ‘I have one thousand reasons why this project makes no sense’. You’d think that in the face of everything else that happened; Justine’s illness, divorce, moving a few times, dissatisfaction at work, shitty places to live – that I’d just get beaten down by cancer, but I didn’t. At least not in the way that other life circumstances had beaten me down.
“Oh hell no,” I thought. “I’m not going out this way. It’s not my time yet.”
I quit drinking. I continued exercising. I cleaned up my diet slowly until I was entirely vegan. I didn’t hesitate to contact MD Anderson, make appointments. I found another job so that I’d have health insurance when my COBRA ran out. I found an apartment and moved. I accepted help from the people around me that were offering help with food, rides, moving. The day after I got out of St. Joseph’s, I went back to St. Joseph’s to get my medical records and a digital copy of all of my radiology. Then I called MD Anderson and made an appointment.
I allowed myself to take care of myself. If I needed to check out on the kids, I checked out on the kids. If I wanted to stay home, I stayed home. If I wanted to go out to see a show by myself, I went to a show by myself. If I wanted to be around people, I found some people to hang out with. I allowed myself to not feel obligated to anything but taking care of myself. Now that I have this skill, I understand that it is vital.
I prepared for that liver surgery at the beginning of January like there was nothing else happening in my life, because there wasn’t anything else happening in my life. Everyone that needed me as a father, friend, son, brother, lover, ex-husband, ex-partner, enemy – needed me to get through this, so I did everything I could to increase my odds of survival. Part of that was a determination that I am my number one priority. I spent a lot of time alone.
After the liver surgery, I recovered very easily. It was so easy that I became depressed. Every time I described my recovery from surgery, I ended the story with, “I am a little freaked out by how easily I have recovered.”
Dr. Zafar looked tired. He is always at the hospital. This was on my fiftieth birthday, ten days after surgery.
“Well you are a little younger than the average person that we treat. But you also followed all of the pre-op instructions and didn’t take any narcotics, which also slow down recovery.”
“But I was looking it up online. I shouldn’t even be eating solid food at this point – let alone standing here. I went back to work three days ago, and I’ve been walking home every day. Four miles. I don’t understand.”
Dr. Zafar couldn’t help himself. He laughed at my concern, “You’ve been walking four miles a day?”
“Yes.”
“You shouldn’t look these things up online. Everyone is different. Like I said, you’re a little younger. There are these pendulum swings on the use of narcotics in post-op, but it’s been proven that you recover faster if you don’t use them. People use them a lot right now, but in a year or two the pendulum will go the other way. Excuse me. It’s time for Dr. Tzeng to come in. I’m going to let him know where we are.”
Dr. Zafar left the room. I was unsatisfied with his explanation. I was starting to understand that I felt a little cheated. I had worked up this liver surgery in my mind to a giant hurdle that would knock me back a month. I hadn’t even been down for an entire week. Dr. Zafar came back in with Dr. Tzeng. Dr. Tzeng shook my hand.
“So you’re walking four miles a day?”
“Yes.”
“And you’re at work full time?”
“Yes?”
Dr. Tzeng laughed and exchanged a look with Dr. Zafar.
“Let me see the incision.”
I pulled up my shirt. He pushed and tapped on my abdomen.
“Looks good. You can start to pull up the glue around the incision. Just don’t be too aggressive.”
“Okay.”
“Do you have any pain?”
“No.”
“Do you have any questions?”
“Yes I do. I made some notes. I got through most of my questions with Dr. Zafar, but I have all of these medications. I don’t seem to need them, so I was wondering if they are absolutely necessary to take them until they are all gone.”
“Which ones?”
“The Tylenol and the Celebrex. I know they are just anti-inflammatory, but do I need them to control inflammation or are they just for pain?”
“No you don’t need them if you aren’t feeling any pain. Just take them as needed.”
“The acid blocker doesn’t seem necessary, but is it necessary because there is acid that I don’t feel?”
“No you can stop taking that.”
“I haven’t been taking the muscle relaxers either.”
Both of them laughed again. Dr. Tzeng said, “No you don’t need to take them. Just be careful. Even though you don’t feel any pain, we cut through the muscles in your abdomen. A lot of people have muscle cramping in their abdomen, so we send them home with muscle relaxers. It’s okay to stop. But don’t lift anything over five pounds. And that’s pretty strict.”
“For how long?”
“Eight weeks. Oh and don’t drive if you can help it. Give that a couple more weeks.”
“Okay. The blood thinners seem pretty necessary.”
“Yes you should continue giving yourself the shot for another few weeks, but with as much as you are walking, it probably isn’t necessary either.”
“Oh wow. It’s that big of a deal.”
“Yes that’s why they have that device that squeezes your legs when you are in the hospital bed. You have surgery and you produce all of these clotting agents in your blood. Then most people are just lying still for way longer than they should. So we give them the blood thinners to prevent the clotting.”
We had some more discussion about starting chemotherapy again. He didn’t like that the next appointment was scheduled so early in my recovery from surgery. He wanted me to have another week before going back into chemotherapy.
“Before we do that, we’re going to bring you back in for another scan. Then you’ll meet with Dr. Kee and I before they start the next infusion.”
“All right. Sounds good.”
Dr. Tzeng shook my hand and wished me luck. Then he and Dr. Zafar left the examination room.
Two days later, I was in therapy again. I gave Victoria the run down on surgery and recovery.
“I am a little freaked out by how quickly I have recovered from the surgery. I have no idea why.”
Victoria also laughed, “Mr. Lines I don’t know why I want to tell you this story, but if you’ll indulge me for a minute, I’ll tell it to you. I have a colleague that has a neighbor that he and his wife have befriended. A couple. They often have drinks in each other’s back yards. So they know each other fairly well. They know each other well enough that this couple will do some bickering in front of them. The woman was always saying, ‘He’s never home. He works late or he’s always out of town. I just wish he were home more often.’ Then over a period of time the other neighbor was having some kind of drainage issue into their yard, so this neighbor filed suit. This woman had to get a lawyer and fight the case, and it was another issue of the husband was never around to help her with the lawsuit.
“So then one day, this colleague of mine was walking to his front door and he saw this neighbor friend, the woman, walking up her driveway. He hadn’t seen her in a while and he asked her how she was. She came running over and she said, ‘You know I was recently diagnosed with breast cancer.’ My friend said, ‘Oh that’s terrible.’ She said, ‘No it’s actually quite wonderful. My husband is home at five o’clock every day, and I happened to mention it to the other neighbor and they dropped the lawsuit.’”
Now I laughed.
“So some time passed and my colleague found himself in their backyard having drinks and this woman was relaying the story of her treatments and that she was doing very well and tolerating the treatments. My friend said, ‘That’s wonderful. Perhaps you’ll be in remission soon.’ And he said that she was so offended, ‘Well you know. It could come back at any time.’”
“Oh wow that is really funny.”
“Now I don’t know if you can find any way to find something of use to you in that story, but I felt like telling it.”
Maybe I have found some advantage to having cancer. I don’t think my story is nearly as concrete as the story that Victoria told. I am even a little skeptical that the story is true, but only a little. It’s just not Victoria’s style to make up a story like that. I do find it useful to consider the question: What advantage is there to having cancer?
Well, I can begin a sentence like this without people questioning my experience at all, “Having had a real brush with mortality…”
I can say I’m too tired or that I’m just not feeling up to it without any further inquiry. I can take psilocybin without people questioning my motivation, “Whatever works man.”
When the kids argue with me or won’t do what I ask, I can say, “Really. I’ve got cancer. Are you really going to argue with me.” (This is really a joke. We have a good time with it.)
In Fight Club, Tyler and Marla are discussing what they are getting out of the cancer support groups when neither one of them have cancer. Tyler says, “When people think you’re dying, they really, really listen to you, instead of just waiting for their turn to speak.”
This is almost true. I have found people listening more closely to what I’m saying. I have also found that I have more interesting things to talk about. As impatient as I have become with others, I have become even more impatient with myself. I don’t spend as much time filling the air with noise. I have more important things to say. Also, people seem to want to hear it.
I don’t think there are many people that actually think I’m dying. I think it’s more like a horror story. There are things that scare everyone. Like cancer. It’s one thing to know about cancer in an abstract way. It’s another to actually have it. I am a good storyteller. I’ve got a good story. I relate my experience well.
“Let me tell you about the time I bled out of my ass.”
“Then I started taking magic mushrooms.”
“Hallucinating in the hospital for three days!”
“Satan manufactures hospital beds.”
I think people listen more closely to what I’m saying, because they just have no idea what I’m going to say next. Honestly, I don’t know what I’m going to say either. I do have some awareness of what I’m doing. I am searching for meaning in this whole experience. If I die, then maybe I’ve left something behind to help other people. If I live, then maybe I’ve used it as the kick in the ass I needed to do more meaningful things with my life.
I don’t necessarily know if there is a point to telling my story. I don’t think of my narrative as any way of advising people in how to approach cancer treatment. It’s just how I’m doing it.
When I worked at Chesapeake, the CIO asked if I would do an outreach talk with some gifted high school seniors that were coming to the Chesapeake campus. She just wanted me to explain the application we were working on at the time. I agreed to do it. That evening I talked to Justine about it. I remember that she was a little distracted at the time working on something around the house.
“So I got an email asking if I would do an outreach talk for some gifted high school kids next week.”
Justine looked at me, “Wait. What?”
“They want me to do an outreach thing about what we are working on. You know. One of those things where you talk about what it is actually like to work in an oil company. All of the different ways you can be a scientist or technologist. I’m just explaining this geology application.”
“Just don’t tell them how you got there. They don’t need to know that you’re a high school drop out that didn’t finish music school and now you are working on high profile scientific applications.”
“Yeah I guess that would be a little counter productive.”
I don’t know why, but Justine always uses a Texas accent when she mocks me like this. I’ve never had a Texas accent. It’s still pretty damn funny. “Yeah look at me. Just do whatever and then teach yourself how to program. It will all work out just fine. Fuck the rules kids. Don’t listen to your parents. School’s a waste of time. Okay let me explain how you drill an oil well over here.”
I laughed,”Okay.”
“Yeah don’t do that.”
I don’t really consider my approach to life as a very helpful guide to anyone. Everything that I have done has been an example of how not to do it. I don’t know why things work out for me – they just do. I do the prep. I fill out the paperwork. I show up.
Do I think this is enough? No. Do I think my past success with this approach is any indication of future success? Hell no. Do I think I can get this book published? No. Am I going to let any of this stop me from trying? I am still breathing. Why the hell would I stop trying?
This is all meaningless. Eventually life will catch up with me, and I will die. We are all going to die. I just know that there are some things that I want to do before that happens. Part of that is connecting with people that I love. This is a way for me to do that.
“I just feel bad that my friend has to work while he’s sick.”
I was on the phone with my friend Jerry. I lived with Jerry for a while in Boston. He also went to Berklee and didn’t graduate. He lives in Salt Lake City now, where he grew up. I wouldn’t say that Jerry is a conservative. More of a Libertarian with a healthy skepticism of government programs, so the position this suggested was a little surprising.
“Oh, wow.”
“I’m serious. The fact that you had to go scramble to get a job and then go to work while having all of these cancer treatments. I have some idea of what it’s like. My dad was much older, but he died from colon cancer.”
“Yeah I know.”
“You shouldn’t have to work through this. No one should. I know you have a good attitude about it. I know you are feeling fortunate that you can actually work through it. You are strong. I get all of that. But you shouldn’t have to do it. It’s a little much.”
“Wow. That really touches me. That you would even think about this.”
“This is one of those things about Europe that we should learn from. Living in Prague for so long. They have no idea. It’s so hard to explain to them what America is like. After several years of living there, I kind of had a thing I would tell people. I don’t crack on America. As much as I complain, travel has taught me that it’s still the best place on the planet. It’s not perfect. But the thing I said to everyone was, ‘America is like the best and worst of everything. We invented jazz and stupid vapid pop music. The sky’s the limit, but you could be homeless on the street. You could meet the best people in the world, or you could be robbed at gunpoint for a couple dollars. You can have the best medical treatment available, but you might still have to work while you’re getting it.’”
“That’s good. I like that. ‘We are the best and worst of everything.’”
“I just wanted you to know that I was upset about that. I don’t like that you are having to work through this.”
“I don’t like it either. But I also know…”
“Yeah you’ve said it before. You don’t want to be sitting around thinking about being sick all day. That might be worse for you than just going to work. I get it. But you don’t even have the choice.”
Silence.
“It is a lot of pressure. I am very lucky that I can go to work. But I am very close to complete ruin. If something happens to me and I can’t work, everything would change. It’s nice to be in this apartment, but it’s not cheap. Nothing’s cheap in Houston. I read an article the other day that said Houston is now more expensive than New York City to live in.”
“No way. Get out.”
“Yeah I know. They factored in transportation costs and it turns out to be more expensive. My kids are in great schools. I’m doing what I have to do, but you’re right. I don’t have a choice right now. My prognosis looks good, but since the liver surgery so many things are in my head. I don’t know what to do with them anymore.”
“I can imagine.”
“I’m starting chemo again this Friday. I have been avoiding a lot of people that I know. I’m just trying to maximize my time feeling okay. I’ve been writing. I’m also putting together a set of music. My goal is to have an hour of music that I can just play and sing at any time with a guitar. I’m getting there. I have about fifteen minutes right now.”
“That’s great.”
“Jeez that wasn’t my point. My point was that I know you have been trying to call me, but I just haven’t wanted to talk to very many people. But I knew that I wasn’t going to talk to you next weekend, so I answered today. But it also made me think that this isn’t just about me.”
“No but you are the one that’s sick.”
“Look man. We’re all going to die. Every one of us. This is just the beginning of the descent. We’re all older now. There won’t be as many stupid punk rock deaths. It’s more of the steady decline. And it’s hard to explain. I won’t be dying any time soon, so this all sounds very dramatic. I’ve got a lot of years left hopefully. It’s just that this is hard on everyone. Troy’s father died a few years ago. His brother died from cancer in 2008. He’s like a brother to me. He isn’t going to dump it on me, but I know he’s upset. Ashley and Rebecca have both been there for me throughout this thing and even before that in my divorce. They both got sick in the last couple weeks and ended up in the hospital. Rebecca was there for ten days. I couldn’t go see either one of them because I have a compromised immune system. That really sucked. I know they’re upset that I’m sick. Emily is upset and concerned. I know that she’s got a lot going on. I talk to her a lot, but she lives far away. She is family to me. I know that it’s just another thing for her to deal with. Justine’s upset. I’m upset for her. It’s good for us in a way. You really find out what’s important when you’re sick. She’s still family to me. Our relationship just didn’t work anymore. My mother – what the hell? I can’t imagine having a child with cancer at any age. My siblings. Everyone’s busy and has their shit going on. They want to do more, but what can they do. It’s nice that we are closer. I’m rambling now. There are a lot of other people I could mention. Our lives affect a lot of people, and I didn’t even get to my kids.”
Silence.
“This time between the liver surgery and the next chemo is really hard. Everything else has been an unknown. Now I’ve got another seven treatments. Fourteen weeks. I know what it’s going to be like, and I think it will be okay. It’s just way harder than the emergencies that happened before. And there’s no guarantee that it will work. But that’s not the point. I’m just feeling really disconnected. Everyone I know has a partner right now. Someone that they lean into at the end of the day. I know it’s why I end up talking to Emily so much. We are both partnerless and have a seriously long history. I don’t feel like explaining everything to new people right now, but she has a life to think about. And my life is like completely on hold. It was like that before, but it’s even more so now. And even while it’s on hold, I feel like I’m asking for a lot from everyone. I don’t want to, but I have to.
“I don’t know what to do with all of this. It’s like a fire hose of shit. I want to do everything, but more often than not, I just end up sitting in my apartment. I’m not sitting around doing nothing. I’m writing. I’m playing music, but I don’t even understand who I am anymore. I don’t want to be doing what I’m doing for work, but I can do it and it’s all right. And this job and the people have been so there for me through the fall and through the liver surgery and they didn’t have to be. I’m going to do the best job I can possibly do just for that. And yeah, I don’t want to be working while going through this. There are a billion things I could be doing, but having to work has certainly focused me.
“It’s just a lot. It is without end.”
I talked with Jerry for some time, but in the end I was alone. That’s where we all end up. Alone. That’s not to minimize the connections that are made along the way. I obviously cherish the connections I have in my life, as we all do.
The next batch of chemo treatments is weighing heavily, but I will be at home sleeping in my own bed, hard as a rock and not manufactured by Satan. I will be cared for by people that know and love me. I have it a lot better than most. The best and worst of everything.
I don’t know if I am doing anything the right way. I’m just doing the next most obvious thing to do.
It is without end.
