Your ship may be coming in.Rilo Kiley, A Better Son/Daughter
You’re weak, but not giving in.
And you’ll fight it, you’ll go out fighting all of them.
At the end of 2018 and the beginning of 2019, I was driving ride share – killing time and making some extra money while waiting for my friend/colleague Ramon to close a contract that never came through. The contract was four weeks on and four weeks off in the mountains of Argentina doing real time drilling data management and analysis. It seemed like it might be the change I needed right then, but it was one of those contracts that my friend just couldn’t close. In hindsight, I shouldn’t have waited. I should have just found something else, but while I waited, I entertained myself with ride share.
I don’t think I made much money doing ride share, but I certainly have a lot of stories. I preferred the times that many drivers just go home, after 10pm Wednesday through Saturday. These are times when anything can happen, but for the most part, nothing actually does beyond a certain distracting amusement. There were nights that passengers would invite me into bars to buy me drinks, into parties, into their homes. I declined a few times and then wondered what the hell I was doing. I made it a policy just to say, “Yes.” Many nights ended with me leaving my car and taking a ride share home.
I wrote a lot during this time and have yet to publish any of it. I am not quite sure why, but I do remember the physical sensation in my gut that I called depression. That sensation that was removed when they did the hemicolectomy in August. I was trying to write that feeling away, and it never went anywhere.
While I had a lot of fun, toward the end, my curiosity and yearning for unique experience started yielding darker and darker circumstances. If nothing happened, I would just keep driving until something did. This took me fairly deep into the Houston Metro. Most of the time this just ended with an amusing anecdote deep in the sticks, but one of the last nights I was driving ended with a bit of a scare.
Early in the evening, I picked up some Asian ladies at the Galleria Mall and drove them all the way to Baytown. I hadn’t been to Baytown in years. It was interesting but not much changed outside of it being bigger. More people. I was hoping to pick someone up that was going back into Houston to make my trip back a little more profitable, but it just never happened. I picked up about ten different fares, but they were all going somewhere else in Baytown.
I was about to give up when the app dinged one more time. I thought, “This is it. Nothing more after this.”
On the way to the pick up, the obstacles stacked up; strange street and highway configurations to a neighborhood that had only one entrance, bad roads, a road blocked by a wreck, a house fire, then a slow moving train that stopped. I almost declined the trip at that point, but I found a way to get on the freeway and go around all of this to an entrance to a trailer park where I picked up the passenger. He hopped into the passenger seat instead of getting in the back. I don’t mind this kind of thing. I just thought he was ready for a conversation.
“Where the hell did you go?”
“Ah, there was a bunch of stuff going on over on the other side, and I was stuck. So I went around.”
He reeked of alcohol but didn’t seem drunk. He was not slurring. “Oh I saw you on the app turning around. I wondered where you were going.”
“I was just finding a better way through.”
“Do you know of any bars over here that are good?”
“No. This is the first time I’ve been in Baytown in years. I don’t know anything about it.”
“I just came up from the valley. I’ve been trying to get work for a while, but I couldn’t get anything. Then somebody called in sick at this refinery.”
“What do you do?”
“I’m a welder.”
He started slurring, “Yeah somebody called in sick, so they gave me this shot over here. I just had to drive up. Gotta be up there at 6am.”
I looked over and he was drunk. It happened that fast. One moment he was just a loud guy that jumped in the front seat. The next moment he was drunk. Not like a little drunk. Drunk. He didn’t drink in my car. He must have arrived at the trailer where I picked him up and pounded a bunch of alcohol, “I took a bus, because ya know, I… CAN’T… DRIVE… Ya know how ’tis. Keeping it clean for the babiez.”
At first this was amusing even if it made me a little nervous. I followed the directions from the app thinking, “We will get to the destination. I will be free of this guy and drive home.”
Then the app ran me into the train I had avoided earlier. It was moving very slow. With cars stacked up behind me, I couldn’t turn around to find another route. I was going to be here a long time.
Some people are very nice when they are sober, but then you put even a little bit of alcohol into them and they become complete assholes. This was one of those guys. Now I was stuck at a railroad crossing with a slow moving train, cars stacked up, and an unpredictable drunk. He wasn’t making sense, and the train agitated him.
“Ah man. What the fuck is this?”
“It’s a train.”
“I can SEE that. What the… Huh… Man… What time is it?”
“I don’t even know… za good bar.”
Now he was leaning over the console and talking with his arms spread. I didn’t know what he was going to do. I was alarmed. He kept making sudden movements and not finishing his sentences. I leaned away and turned my body toward him, so I could see what he was doing. I was trying not to engage him, but he kept ending his sentences staring at me like he was waiting for an answer.
“Why we gotta go this…”
“You know a better way?”
“Oh man. You gotta…”
“And we can’t get out now. There are cars behind us.”
“What you saying man…”
Now he was right up in my face. I turned away from him and got out of the car. I didn’t know what I was going to do. I just couldn’t sit there with him breathing on me.
“Where ya fuckin goin’…”
It was like I was on autopilot. I walked around to his side of the car and opened the passenger door. He looked up at me.
“What are you fuckin’ doin’ man?”
“Get out of my car.”
“Get out of my car. I don’t want you in my car anymore.”
“You can’ leave me here.”
“Oh yeah I can. I’ve had enough.”
“No. You can’ do tha’ shi’.”
“Oh yeah. I can. Get out of my car.”
“Mo’ ‘ucker,” he fumbled with the seat belt and swayed to his feet. I backed away a bit and waited for him to stop moving. He found his legs. I moved to close the door. He stepped in front of me, so I backed up again. The cacophony of metallic noise coming from the slow moving train, only a few feet away, was deafening as we stood in the glow of headlights from the cars behind us.
He yelled, “Mother fucker. I’m gonna…”
He took a few steps toward me. I didn’t flinch. I don’t know why. I was scared. He was strong and young and crazy. He stopped with his fists up like he was about to hit me. I still didn’t move.
I raised my voice just loud enough to be heard, “I may be old, and you’re probably gonna win. But I’ve got one more in me, and I’m gonna hurt you.”
This appeared to scare him. He took a step back, “Man. You can’ leave me out here. What am I gonna do?”
“Get another car.”
“Ah. Jus’ take me. Don’ leave me here.”
I closed his door and walked around the car, “You should have thought about that before you started being a dick.”
“What di’ I dooo…”
I talked over the car, “Just get another car. I’m not driving you anywhere.”
“I’ll be cool.”
The train was taking a long time. He just kept doing this I’ll-be-cool shtick until I gave in.
“I’ll give you a ride, but you have to be cool.”
“I’ll be cool. I’ll be cool.”
“We’re gonna get in the car and talk about your mother for the rest of the trip. If you talk about anything else, I’m going to stop the car and let you out.”
His mother was 58 years old and lived in Corpus Christi.
“When was the last time you talked to your mother.”
“I don’t know man. It’s been a long time,” he was struggling to speak without slurring.
“Why don’t you call her?”
“Nah. She don’t wanna talk to me man.”
“Yes she does. She just wants you to be cool.”
The day before my chemotherapy infusions resumed, I went in for a CT scan and bloodwork. That evening, Dr. Tzeng’s Physician’s Assistant called me:
“Mr. Lines are you still taking the blood thinner shots?”
“No. I forgot. I haven’t taken any in about a week.”
“Well you have a blood clot in your lung.”
“Do you have any of the shots left?”
“Yes. I’ve got quite a few left. I’ll start taking them right away.”
“Well hold off until I’ve talked to Dr. Tzeng.”
This was enough information to send me into a bit of a panic. I went from planning my life to expecting my death in a few seconds. I talked to Aaron, my mother, Barbara… Anyone that would know something about this. If I mentioned it to anyone else, I didn’t indicate my own level of anxiety. The PA called back a couple hours later.
“Dr. Tzeng said to give yourself three of the shots right now and he’ll give you a prescription for an oral blood thinner tomorrow.”
“So three shots right now. Take them right away.”
With all of the PA’s urgency, it took me a while to understand that Dr. Tzeng wasn’t very concerned. If he thought there was a big problem, he would have me at the hospital with an IV right away. I verified this among the medical professionals that I know and went to sleep.
Dr. Tzeng shook my hand.
“So how do you feel?”
“I feel great.”
“Can I see the incision? Oh very nice. You are healing up rather nicely. So your scans are all clear…”
“Except for the blood clot.”
“Yes except for the blood clot.”
“Where is it?”
“Lower right lobe of your lung.”
“Is it a big clot?”
“No. It’s pretty small.”
“So do we know if it has been there since the surgery or if it’s new or what?”
“No. As you know, this is the first scan since the surgery. So we really don’t know. It could have been there the whole time. I was talking to Dr. Zafar and this sort of alters our view of the data we have on blood clots after surgery. So it turns out that 1 in every 30 surgery patients get a blood clot. We have this vision in our heads of people getting clots that are sitting around doing nothing. You are exercising every day.”
“Oh yeah. So I guess the numbers aren’t about that.”
“So what do we do?”
“Well protocol will have you on blood thinners for the next six months.”
“How do we check on it?”
“We don’t really. You’ll have a scan after your chemotherapy is over. But six months of blood thinners no matter what.”
Dr. Tzeng just wasn’t that concerned about the blood clot. It’s news like this that is hard to assimilate. A report of a blood clot in my lung seemed really important, life or death. Nope. Blood thinners and a CT scan in three months. What are the numbers on how many of these blood clots develop complications or worse? Never mind. I don’t want to know. Don’t Google it…
“Your CEA is way down. It started out at 581, almost 600, back in October. It’s at 5.1 now. We don’t know whether that will get all the way to zero. Some people don’t, but it could be lingering cancer cells in your blood, which is why we are doing the next 7 chemo treatments. We are just hunting down any of the cancer cells that are left. There is nothing in your scans that we can see. Your liver looks great. Your liver and kidney function are normal, so you’ve bounced back from the surgery very well.”
“What about the nodules in my lungs? I saw the radiologists notes on the CT scan. I know they are small and they could have been there from the beginning, but what is your opinion?”
“We’re just going to have to watch them. They are too small to biopsy. Anything under 2 millimeters is not worth a biopsy. We don’t know whether we’d be doing more harm than good, and the sample size just isn’t big enough to guarantee that we’d have something worth looking at.”
“The scan analysis from the radiologist says that the nodules are bigger than the previous scan. Is it possible that this is just inflammation from the surgery?”
“It’s hard to tell. They did say they are bigger, but they are still under 2 millimeters, so we don’t know what that means.”
“In your opinion, if they were cancer, would they be a different cancer than the colon cancer? Like some new strain of cell that was specific to the lung?”
“No. I doubt it. That’s not how a new cancer would form. If they are cancer, they are almost definitely a new metastatic site for the colon cancer.”
“So knowing that the chemo we are already using works on that colon cancer, if they are cancer, then they should already be dead or they should be killed by the next 7 chemotherapy treatments.”
“Yes. We already know that the drugs we are using work on that specific cell. We are just going to have to keep an eye on these nodules. You are going to be in here in May after the last infusion for a scan. We’ll look at them then. If they are still the same size, we still aren’t going to do anything. After that, you will be in here every three months for a scan for some time.”
Dr. Tzeng put down his notebook and logged out of the treatment room computer. He turned his chair to me and said, “So what did you do to prepare for this surgery?”
This question was unexpected, “Well… Um… I… wasn’t getting anywhere with the weight loss that you initially asked for. So I decided to pay attention to the workout. Then you kept asking for more, and you wanted to reduce inflammation and empty the fat from the liver. So in the absence of weight loss, I just switched to a vegan diet about ten days before the surgery. I figured that at least I could be fit and reduce inflammation that way. Since the surgery, I’ve just stuck to it.”
“Well how did you do it? I’ve been trying to switch to a vegan diet. I just can’t cut out that last bit of meat. I can’t make the leap.”
I wanted to say, “Try mushrooms.” But I didn’t think this would be a good way to continue the conversation. It is what I think happened. Having talked to other people that are microdosing, this is one of the benefits that everyone describes. It’s just easier to do things. One friend of mine said that she’s been trying to workout regularly for years but has just been sitting on the couch doing nothing. She started microdosing and now she can’t remember why she was having a hard time with it.
I told Dr. Tzeng that I have read a ridiculous number of diet books. I am always trying something new, and I’m still forty pounds overweight. My metabolism is just like that. Imagine what I’d look like if I wasn’t trying. I’m just trying to find something that works that I can live with.
“I know that the vegan diet reduces inflammation, and if you wanted the fat out of the liver, this was one way to do it. I don’t know why I was able to stick with it this time.”
I give credit to the mushrooms, but I really don’t know why it’s working. It could be a placebo effect. I read that psilocybin makes a person more suggestible, so I took it and suggested to myself that I exercise more. It worked, so I suggested to myself that I change my diet. That worked too. I don’t care if it’s a placebo effect.
Dr. Tzeng seems like one of the most disciplined people that I have ever met. I have some understanding of the commitment it takes to become, and practice as, a surgeon. He’s at the top of his game. That he has a problem with discipline in any area of his life is baffling to me. Just another human with impulse control issues. Of course, in some areas of his life, he’s got it locked down. Still, it was a humanizing insight.
I met with Dr. Kee, the Gastrointestinal Oncologist, in the afternoon. He shook my hand and looked at me while talking. After my first meeting with Dr. Kee in October, I would have imagined that he was incapable of this kind of warmth. We didn’t talk about diet, but we discussed all of the same issues I had discussed with Dr. Tzeng. There were few variations in their responses, but I felt like they were significant.
“I have found that people do better with liver surgery than colon surgery.”
“Yes. It’s really no surprise that you did so well with the liver surgery. You bounced back pretty fast from the colon surgery. You weren’t under our care for that surgery, so we only had your account to go by. But given your level of activity before both surgeries, it shouldn’t be a surprise to us.”
It was a more pragmatic view of my post-op recovery, but it still lined up with Dr. Tzeng’s enthusiasm. Although, Dr. Kee’s pragmatism did not account for why some people have the discipline to follow the instructions and some don’t.
“What’s really baffling to me is that people respond even better to lung resection than liver or colon surgery.”
“That seems rather unbelievable to me.”
Dr. Kee closed his eyes and shrugged
I often find myself at a loss when trying to describe certain experiences. For atheists and agnostics, there is no equivalent language to describe a spiritual experience. I have tried putting words together that describe the experience without referencing concepts that are religious or spiritual, but the words just don’t exist. Over time, I have just accepted that I can overload the terms.
As I have mentioned, I was raised Catholic. I have been through all of the sacraments except for marriage, holy orders, and, of course, death. I did the sacrament of confirmation at St. Jerome’s Catholic Church in Spring Branch. I was fifteen or sixteen.
Confirmation is loosely about making the decision to be Catholic. Up to that point, all of your decisions are made for you; baptism, communion, mass… Confirmation is the first decision you get to make for yourself. At least it’s presented that way. It’s convenient that it happens when you are a teenager and your parents are still telling you what to do. It’s easier just to go along with the decision rather than truly explore whether it’s something you really want to do.
I actually don’t mind that I went through this ritual. It turns out that it was a formative experience for me. I know my mother was passing on the tradition of her beliefs. She never really got onto us about actually believing – like drilling it into us that we had to believe. But the sacraments were something we were going to do.
Before confirmation, there are classes that explore a lot of the same ground that is covered in CCE, communion, confession, mass. There were two day long retreats. I was high for a good many of these classes. I didn’t get high specifically for those days. I just spent a good amount of my teenage years high all of the time.
Honestly, I don’t know why I even attended the preparation classes. I didn’t feel any particular obligation to attend my high school classes. I am sure that for most family, or other, obligations that I found distasteful, I just wouldn’t show up at all during the assigned times. Somehow, I always ended up at the church on the required days regardless of my state of mind. It really doesn’t make much sense.
I don’t recall being particularly skeptical of the process. In fact, even on the day when I made the mistake of taking LSD just as on of the retreats was starting, I was excited to go. I remember my friends being shocked.
“Oh no. My mother is outside. I forgot there is a confirmation retreat.”
“You just took a hit of acid.”
“Yes. I know.”
“Yes. It’ll be fun.”
And it was fun.
Even though the material was the same, the discussion was not. I have often appreciated the objective nature of Catholic educators. They have a tendency toward candid responses to difficult questions that make room for all points of view. I explored a lot. I asked questions. There was a young priest that was often available for these events that was easy to talk to and very intelligent.
So I don’t remember having an idea in my head that I believed one thing or another at this time. I was just attending the classes and participating. I probably participated more in these events than I did in any other institutional events during my entire high school experience. If I believed anything at this time, that belief was that there is a God. I didn’t often think about God or whether I believed, but being that the only discussion about God around me was from the standpoint of belief, I am sure that I had a default belief. In other words, having made no specific choice, I was beginning from a place of belief.
The day of the actual confirmation came with me feeling slightly sick. I don’t recall anything in particular other than I just felt weak and frail. The bishop for the diocese was there to perform the confirmation. Each student approached and told the bishop his confirmation name, the bishop explained the significance of the chosen name, some ritual words, then the bishop put a dab of sacred oil on the forehead.
It was only in the line leading up to the bishop that I began to think about belief and choices. I wondered whether it was possible that some people realized that they shouldn’t be making this choice and left at the last second.
Then I was standing in front of the bishop telling him my name, “Lawrence Michael.”
The bishop said some words about my name and some other things that I don’t remember or never heard. Then I saw him dab his finger in the oil and reach for my head. There is so much detail in my memory of his index and middle fingers together approaching my forehead. The moment his finger touched me, I heard a voice, “You are not Catholic.”
I understood very clearly in that moment that I wasn’t a believer. In my mind, ‘Catholic’ was synonymous with ‘Christian’ or even more generally belief in God. That was my first spiritual experience, the denial of spirit.
What I have found is that experiences like this are hard to integrate into daily life. I don’t think I was really comfortable with saying I am an atheist and knowing what that meant to me until I was at least thirty years old. I was confused by my confirmation experience. I wanted that denial to mean something else. I explored other religious experience. Nothing felt as right and comfortable as saying, “I am an atheist.”
Each chemotherapy infusion is a process of disintegration and federation spanning about five days. During the first three days, pieces of me get ripped away. Many events and conversations that happened in the week leading up to the infusion are completely forgotten once the infusion has begun. I can be completely coherent and lucid. I can even perform complex tasks while having conversations. I can eat. I can read.
On the other side of infusion, I remember little pieces of myself, and pieces of myself is a good metaphor. It’s the mental equivalent of stumbling around my apartment and finding body parts.
“What’s this? A finger. Oh look at that. It’s my finger. We’ll just put that back over here.”
Sometimes I’ll just be sitting somewhere, and a whole conversation will replay in my head. By the end of it, I may realize that I made a commitment in that conversation to do something. Then I will call or text the other person to confirm.
In the week leading up to this infusion, I started reading a book called When Breath Becomes Air, by Paul Kalanithi. The book was given to me by my friend Elysa for Christmas. I was skeptical of reading it and wondered at her intent since she then gave me another book written by a different neurosurgeon about his own death for my birthday three weeks later. Honestly, it seemed a little insensitive. On receipt of this second book, I asked a passive aggressive question, “Are you preparing me for death?”
Elysa said, “Yes.”
Then she went off down the hall chasing her three year old, leaving me to contemplate how dismissive I can be. I don’t know if she was aware of my feelings about having received these books from her, but her answer was so direct and caring.
It made me think about everything I had written. Every way I had represented myself to me. No fear. What’s next? Live until the day I die. Could it be that my friend knew something that I didn’t?
Having put out whatever small child fire had happened in the next room, Elysa came back into the living room where she had left me. I was still standing with the book in my hand, handling the ‘yes’. She took enough time to get my attention and said, “I wish that I had read both of these books before I went through what I went through with my year of intestinal surgery hell. One of them wasn’t even published yet, and the other was given to me while I was in the hospital. I didn’t read it for another ten years.”
For me and what I know of Elysa, this was a stellar endorsement. Many times in the six months since my diagnosis, she has given me nuggets of wisdom that have had me reevaluating my world view. Each of these caught me by surprise. With these gifts, she was trying to tell me something important, and she hadn’t backed down from my casual dismissal. I should at least acknowledge that by reading one of them.
When Breath Becomes Air is a profound accomplishment made even more profound by the fact that I began reading it in the week leading up to my sixth chemotherapy treatment and finished it on the final day of my infusion. It is a book written by Paul Kalanithi about his own death and then completed by his wife after he died. There are many people that I know to whom I would never give this book. Aaron and Justine in particular would kill me if I gave them this book in response to their illnesses.
I had a spiritual experience. Something about the combination of the chemotherapy, the long absence then expectation of chemotherapy, and reading When Breath Becomes Air created the conditions for this experience.
I am no longer afraid. There is no need for the word ‘of’ in that sentence. I am just no longer afraid. A few hours after I finished the book, I had the thought that anxiety is just a way for me to say I don’t want to be afraid, but fear is a human condition. Anxiety is the fear of being afraid. It is not possible to not be afraid, but I no longer care if I am afraid. In allowing myself to be afraid, I am no longer afraid. A lifetime of anxiety disappeared in an instant. I expect its return at any moment.
It feels just as weird as it sounds.
Sometime after I had half my colon removed, Elysa said to me, “You do realize that you will never be able to put this out of your head again. You will always have this thought in your head, ‘Am I getting sick? Is something terrible going to happen? Am I going to die?’ You just have to find some peace with it. It’s hard.”
I actually thought it was a tactless thing to say at the time, but over the coming months it ballooned into a real reckoning with reality. I did have a new and inescapable thought process about illness and death. I did have to find some acceptance with this new inner voice. When Breath Becomes Air brought me to a new place with that inner voice. I found peace with its message.
“You will die.”
When Lucy was born ten weeks early in 2009, I remember standing in one of the professional buildings in the medical center. It was the lobby of some doctor’s office on the 20th floor. I was looking out over the Rice University campus and West U full of worry for Justine and Lucy. It occurred to me that there were seven billion people out there. In one hundred years, all seven billion people would be dead, but there would still be seven billion people out there. Or more. All of their lives just as important as this life is to me.
On a cosmic scale, one hundred years is nothing. It’s here. It’s gone. I think most people can understand the insignificance of the human lifespan on a cosmic scale. But what about the experience of our lives. Twenty years is nothing. I might as well have already died.
When Iggy was born, I remember thinking about how birth wasn’t the clean package suggested by our conversations around birth. Birth is ugly and beautiful, and defies description. It’s like the universe rips open and this life is just poured out into the world gasping and sputtering for air. It’s a miracle every time it happens.
After my weekend with Paul Kalanithi, I understood that death is the same way. Death is messy, death defies description, and death can be indescribably beautiful. Death certainly won’t fit into a neat container no matter how hard we try. In the end, there will be a version that fits into a neat enough anecdote that can be re-told to the living without consequence.
Also, I am not dying. I have a manageable cancer. It’s more likely with each treatment, each surgery, that I am going to be all right for some amount of time. Some amount of time that no one can predict. The same amount of time that can’t be predicted for perfectly healthy people.
At the same time, I am already dead. I have experienced some kind of psychological or spiritual death. There is a separation between who I was before August, 2019 and who I am now. I still have that person’s experiences, but my experience of the world has changed. There is no retrieving that person.
Integrating these intense experiences has grown more and more difficult as the treatments progress. I have grown weary with this intensity. It became harder to keep track of all the changes. I am unsure of who I am, and I unsure that I will ever be sure again.
During the chemotherapy infusions in the Autumn of 2019 before liver surgery, I fell into a rhythm. Every two weeks on a Friday, I presented myself for the beat down. Then I would slowly recover until the weekend between the treatments. A euphoric time where I want to do everything before they make me sick again.
I love Numbers. It’s a night club that I first went to sometime in 1984 when I was fourteen. It’s crazy and diverse and fun. I have a long history there. Justine and I are attached to it. Understanding its importance in each of our lives has led to us checking in to make sure we don’t end up there at the same time. I made plans with Troy and Ashley to meet them there on that Friday.
The inconvenient part of all life changing experience is that you have to learn how to function again. I was having a hard time with this. I was excited for myself and for what I could write about it, but as the week wore on with work and the tasks of the mundane, I started to feel like a ghost in my own life.
At first I felt like my same life just with a different set of senses, but then I became more and more detached from the experience itself. I even had a hard time caring. It was a subtle slide throughout the week. Friday night, my daughter, Lucy, had a scooter accident in the parking garage. Caring for her injuries that night grounded me a bit. Justine took over later and I went out. I didn’t feel okay at Numbers. I felt like a distant observer. Somehow I still count the experience as enjoyable.
Sunday morning, I woke up weeping. I was so disoriented by this that I was having a hard time even understanding what was happening. Eventually, real concepts behind the sadness emerged. Since November of 2016, my life has just gotten continually worse. Justine’s illness, divorce, moving from the Heights, losing vocation, then cancer. I wouldn’t say that things are getting better now, but they aren’t getting worse.
I sent the following text to a number of people, “the world is a cold, empty, and lonely place. pointless.”
Then I got up and walked out the door. I walked eight miles and came home and did push ups and stairs. It didn’t help much, but at least I had worked out for four hours instead of just lying around thinking about how I was feeling. I spent the evening explaining myself to friends that had received my texts.
Death will not fit neatly into some story I can tell here. Paul Kalanithi’s story, and its effect on me, is not a story that I will be able to properly relate. My experience, spiritual or not, has not brought me to some understanding or reckoning with death or cancer or any of the experiences of the last four years. I am still just trying to get by. Getting by is just as beautiful as it has always been.
My next chemotherapy infusion, number seven, went horribly wrong. I puked for the first time, but that word reveals very little of what actually took place. I was texting Troy to just wait in the valet area for me to walk out because the infusion was almost. Ten minutes later I was texting him to park and come in.
To say I felt like I was going to die would imply some conscious thought process at work. I remember being conscious enough to puke into the trash can and to run to the bathroom when it came out the other end. I was wracked with spasms for two hours. When it was over, I felt like a spent tube of toothpaste with legs. I remember holding the trash can and saying, “That’s one way to get an ab workout.”
Somewhere nearby I heard Troy laugh. It was enough. Enough to know that I made Troy laugh. As worried and distraught as I know he is. I made him laugh.
When I was done with the puking and spasms and shitting, two hours had passed. The nurse had kept her cool and treated me well. Dr. Kee prescribed more antiemetics and other drugs over the phone. Stabilized, the nurse started setting up the infusion bag for me to take home for the rest of the weekend.
“We are continuing the treatment?”
“Yes. Of course,” she said.
Of course the treatment continues. Spiritual experience or not. Anxiety free, fearless… The treatment continues. The possibility of death is not diminished by the acceptance. The dirty disintegrating nature of cancer treatment is not lessened. It’s just more.
My weekend was a nightmare of discomfort. On Sunday, my friend Yolanda came to take me to the hospital to have the pump disconnected. It was the first time that I had been to MD Anderson with another cancer survivor. She had a favorite parking garage and a favorite parking spot. She had memories of the corridors and the waiting areas and remembered the flower for the waiting area of the radiation treatment facility.
I talked when I could and closed my eyes when the world had too many things happening in it. I nearly fell asleep in the waiting area. Suddenly I popped awake and looked around disoriented until I remembered where I was. I had the distinct thought that this was the beginning of a new phase of my life. The thought brought me no comfort.
Yolanda took me to get food at Lua Viet and stopped at the Whole Foods for me to gather some staples I knew that we needed. I knew that I needed to eat even though I felt nothing like eating. Home again, I ate half my food and immediately vomited. Then I dry heaved for thirty minutes. My stomach calmed down. I rinsed my mouth and ate the other half of my food.
So two treatments, two completely separated experiences. More internal changes to integrate. Maybe a new treatment reality of violent reactions to accept. Five more treatments to go. No guarantee of remission at the end. A little more insight into the messiness that is illness and end of life.
I am apprehensive but no longer anxious or afraid. None of these feelings will change the reality that I face. It is a strange courage to submit to each of these degradations. Knowing and uncertainty at the same time. Recovering from this treatment was strange, and I had very little experience with which to explain it even to myself. Again, it was a fellow cancer survivor that gave me the words. This time a co-worker that is a little older.
“Puking from chemo is different. It’s not like just throwing up. I don’t know how to explain it.
“Oh you don’t have to explain it to me. I understand. The inflammation happens very fast and you become very tight and everything that ever hurt – hurts again at the same time.”
“Wow that’s a good description. And then there is after. Like I am not 100% even now. It’s been six days.”
“Yes and you’ve got nothing to show for it. Not even a bruise. It’s like some guys found you in an alley and had a boot party on your head. You feel like you’ve got lumps on your head and a misshapen face and blood shot eyes, but you look fine. And everyone says, ‘Well I’m glad you feel better. You look good.’ And you do. You look fine.”
“Holy shit. That’s exactly it.”
And I don’t know how the next one will go. I really don’t. I feel tired and exhausted and lonely. I simultaneously want to reach out to everyone I know and crawl in a hole until its over. And while I don’t know how it’s all going to turn out, it’s almost irrelevant how many more treatments I have scheduled. I only know about the next one, and I do know that it may beat me down. I’m not going to win – meaning I can’t stop the beat down, but I’ve got one more in me. I can do that. One more. I’m going down fighting.
I don’t know about the title, but the election season is in full swing, and I could give a shit.
“Your ship may be coming in. You’re weak, but not giving in. And you’ll fight it, you’ll go out fighting all of them.”
4 responses to “death, dying, politics and fuck you”
You’re amazing! ❤️
I didn’t know you had nodules on your lungs. I feel like I recommend the book prematurely. Don’t read Proof of Heaven. Perhaps we should all micro-dose and I guess we should go to numbers, like yesterday. I love you, friend ❤️
❤️ that book was right on time. Don’t start getting timid on me now Elysa.