Ineffability is the concept that some things cannot or should not be expressed in words. Those things can be as high minded as God, the soul, or a mystical experience. It can be as simple as vulgar language. I am certain that the essence of my experience after the surgery is ineffable of the “can’t be done” variety. I’m going to write about it anyway.
From wikipedia: Paralytic ileus: Obstruction of the intestine due to paralysis of the intestinal muscles. The paralysis does not need to be complete to cause ileus, but the intestinal muscles must be so inactive that it prevents the passage of food and leads to a functional blockage of the intestine.
A paralytic ileus is one of those things I wish could have been described to me beforehand, but I don’t think it can be described in a way that relates the experience. Also, most of the people that could have described a paralytic ileus to me in the hospital have most likely never had the experience themselves. They have probably witnessed people suffering from the condition, and I’m sure the experience looks completely different in each patient. The concern is kept behind a facade of questions. Questions that make sense later.
“Have you had a bowel movement? Have you passed gas?”
The anesthesia affects different parts of the body in different ways. The guts wake up slower than the rest of the body. The small intestine will just stop moving. This can last anywhere from a couple hours to a few weeks. Opioids make this process take even longer, because opioids slow down the intestines.
Hospital food is bad. I don’t understand this part of the hospital experience. I know there are some hospitals that have decent food. St. Joseph’s is not one of them. Of course, they might actually have decent solid food, but I have never eaten their solid food. I was restricted to a liquid diet from the moment I arrived.
The food delivered to me was broth made from a packet; vegetable, chicken, or beef – none of which tasted any better than the last. A cup of jello. An apple juice. And that’s it.
I couldn’t really eat any of it. After the surgery, this was even more true. If the bowels aren’t moving, then whatever the stomach receives, stays in the stomach. I could feel the contents of my stomach sloshing around.
Justine brought me some vegetable juices from Juiceland. Rebecca and Troy brought me broth from the Vietnamese restaurants in midtown. These deliveries led to the discovery that the quality of the food was not the problem.
No one told me that the food was going to stop in my stomach. I feel like that was important information. Of course, the doctors and staff may have wanted to get my small intestine moving by putting pressure on it from the stomach. If that was the case, it didn’t work.
I started feeling nauseous on Monday evening just before my mother went home. I started throwing up on Tuesday morning. The first time I threw up was a relief.
Then it kept coming. After a while, it was no longer what I had recently put in my stomach. It was just bile backing up into my stomach. My intestines started to ache. By Tuesday evening, I was intensely aware of where the connection had been made between my upper and lower intestines. The ache turned into acute pain.
There was still the steady stream of visitors: nurses, nurse’s aids, food delivery, Camilla to clean the room in the morning, friends, family, doctors in the morning, doctors in the afternoon, doctors at night. Doctors:
“Can we see the incision? Does it hurt?”
“Yes.”
“Do you want something for the pain?”
Insert explanation of what works and what doesn’t.
“I’d rather feel the pain than experiment with a new way to not feel pain that more than likely will not work and will probably cause some new way for me to feel uncomfortable.”
“Make sure to get out of bed. We have to get your bowels moving. Walking helps.”
“The hallway from here to the elevator and back is point one two miles. If I do that ten times, that’s over a mile. I’ve done that twenty five times today. I’ve also been doing chi kung here in the room and meditating on the pain.”
Blink.
“Kill them.”
I felt feverish. I felt uncomfortable in the bed. I felt uncomfortable on my feet. I felt uncomfortable stretching my hands above my head while standing on my toes. If you came to see me on Monday, Tuesday, or Wednesday and I don’t mention it here, I don’t remember it. I didn’t sleep. I didn’t eat. I’m pretty sure I talked as much as I normally do, which is a lot. I’m not sure what I presented to the world.
“On a scale of 1 to 10, with 1 representing no pain and 10 representing the worst pain you have ever felt, what is your level of pain right now?”
“10.”
“10?”
“10.”
“Is there something we can give you for the pain?”
I was in rehab for 5 months when I was 17. I had a doctor that fought for me to be on zero medications. The hospital wanted to medicate me. The staff thought it would be a good idea. Many people tried to advocate for my right to choose a medication for some relief. I agreed with the doctor. Zero medications.
Meth withdrawal is extremely painful. I did it three times. Each time was the most painful experience of my life. For the rest of my adult life, I had a baseline for pain.
When I was on the field in Oklahoma City with a dislocated foot, many co-workers within earshot, the EMT’s asked me, “On a scale of 1 to 10, with 1 representing no pain and 10 representing the worst pain you have ever felt, what is your level of pain right now?”
“9.”
“9?”
“9.”
A couple of weeks later, probably half of that team sitting in my office, somebody said, “I don’t know if you mind me asking this, but when you were lying on the ground with the EMT’s, one of them asked the scale of one to ten pain question. You answered nine very quickly like you had a really good idea of what 10 was. What was it?”
“Meth withdrawal. Never experienced anything like it in my life before or since.”
My abdomen grew into the focus of my entire existence. I couldn’t think of anything but my abdomen. I don’t have a time frame. I threw up and focused on the pain. It went on until I forgot about time. Until I no longer expected it to end. Until there was nothing that existed for me but the pain.
I have episodes in my head like dreams.
My friend Elysa came with her girls, 4 year old Del and 2 year old Edie. They made me cards. I was so happy to see them. Edie threw a fit about staying that made me laugh. Then she wanted a hug. Then it was time to leave and she threw a fit about leaving. Del rolled her eyes at her sister and threw herself in a chair. I laughed. The abdominal expense of laughing was worth it. How much more pain could possibly be caused by laughing?
Elysa has an abdominal surgery, bowels exploding story that I had heard a few times. She told it to me again between toddler antics. I heard the details with different ears. A year in the hospital. Resection after resection. Visions of doctors with yards of small intestines in their hands trying to put her insides back together like a jigsaw puzzle.
Dr. Garza standing against the wall at the foot of my bed. I was in a rare calm. Same pain. Psychological tolerance level of 10.
“Do you have any questions?”
“Yes I do. You cut off the upper half of my colon. Maybe a foot?”
“Two feet. Maybe more.”
Blink.
“So you removed two feet of colon. The lower half of the colon goes along here and comes down here.”
I traced finger above my belly button to the left and then down the left side of my abdomen.
“Where it goes behind the small intestine to the rectum?”
“Yes.”
“So what is now the end of my colon was attached to the abdominal wall up here. In the surgery, do you pull the new end of my colon down to my small intestine and connect that new end to what is left of the cecum?”
“No we turn the small intestine and connect the cecum up where the colon is still attached to the abdominal wall.”
“What?”
“We turn the small intestine.”
“You turn the small intestine?”
“Yes.”
The idea of turning my small intestine plagued me. Why wouldn’t they tell a person that they were going to turn their small intestine? It seemed inhuman to not provide that kind of information. I also understood that probably no other patient in my situation had ever given a shit about their small intestine being reoriented in the abdomen. It probably seemed like such a small detail to everyone involved.
“You have a complete blockage of your colon. We’re going to remove half of your colon.”
I’m sure for most people that’s enough information.
“Half of my colon is going to be removed. My life is going to be irretrievably different.”
Not me. I brooded about the reorientation of my small intestine and how no one told me before or after. If I hadn’t asked those questions to clarify what I thought was a foregone conclusion – my colon was detached from the abdominal wall and stretched over to what was left of the cecum – I would have never known that they had actually turned my small intestine. I was unsure of how to think of the world. How was I supposed to approach normal experiences with a small intestine in a different position. Would I think of the world differently? Would I feel the same? What if my feelings were hurt more easily? What if my center of gravity changed? How would the new position of my small intestine affect my ability to fight?
I actually sat up in bed at some point because I couldn’t get the idea out of my head that it would be more difficult to put my hands on my feet. Would I be able to tie my shoes? I hung my feet down off the bed. Then I lifted a foot expecting it to be more difficult to grab my foot. I was more flexible than I had been in years. I could easily put my hands on my foot. I could even grab my toes and straighten my leg out in front of me.
I thought, “Maybe that’s what I’ve needed for a while now. Someone to turn my small intestine.”
An Occupational Therapist came by to help me relearn skills like tying my shoes or putting my clothes on. She had a list of simple tasks for me to accomplish. I put my shoes on. Tied them. Grabbed my toes and straightened my leg.
“Oh you’re fine.”
A radiologist with tattoos came to see me twice with a portable x-ray machine. The first time she was by herself. I was pacing the floor in front of my bed. She laid a board on the bed and told me to lie on it.
“I’m sorry. A lot of people find this uncomfortable.”
“Why? Am I supposed to be naked?”
“What? No. The board is uncomfortable on the back.”
“Oh.”
I got into position, “This is great. This bed sucks. Can I keep the board?”
“Where are you from?”
“A planet you’ve never heard of.”
She didn’t even look up,”I live in the Montrose too.”
I laughed. “Oh it’s not that cool anymore.”
“Okay boomer.”
It turned out that she lived in an apartment complex where I lived in 1999. She took a picture of my abdomen. I told her I wanted 9 wallet sized prints with 2 refrigerator magnets.
“Two? Aw you have a friend now?”
“No. I was going to give one to you.”
“All right. It’s been fun.”
I walked her to the door and closed it behind her. I turned to the left, took three steps into the bathroom, and projectile vomited into the toilet.
The second time she came she had an assistant/intern with her, and she was a different person.
“Where are my refrigerator magnets?”
“Hello Mr. Lines.”
“Hey how you doing?”
“Okay. I’m going to put this board in the bed and you’re going to lie down on it. It’s pretty hard.”
“Okay.”
I vomited when she left.
On Thursday morning, the Hospitalist (another doctor) came to deliver the news that I had already known. I had colon cancer. The mass in the colon and the biopsy of the liver both came back positive for adenocarcinoma. The Hospitalist was ready to console me, but I had very little reaction to the news.
“Do you understand what I’ve told you?”
“Yes.”
“I’m surprised then at your reaction. It’s very big news.”
“I’ve known since the CT scan last Thursday.”
“But there’s no way to know for certain without the lab work.”
“I decided then that I can’t live my life as I wish it would be. I know lab results are the real story, but there’s very little chance I would have two benign masses on two different organs. It doesn’t help to be superstitious about a thing that already is. You can pray and hope all you want, but if the simplest explanation is cancer, that’s probably what it is.”
“That’s very pragmatic. I just don’t get many – any patients that take the news like you just took it.”
“I already had the news delivered to me last week. I had my moment. Believe me.”
“Well you have many options here in Houston.”
“Yes we have the most successful cancer hospital in the world right down the street.”
“Yes. MD Anderson. It can be difficult to be seen there. I have an oncologist’s name. I can have her come here to discuss treatment options.”
“Sure.”
There were many people sitting in the recliner at different times. I moved it so I could look at them. Camilla moved it back every morning.
One night, my mother was there. Troy walked in with Stevie. I wasn’t expecting her at all. She came to the side of the bed and kissed my head. It was the most amazing experience.
“Oh holy shit. Stevie kissed my head.”
I have heard people describe this – needing people to touch them while they were in the hospital. People that weren’t poking them with needles or wrapping a blood pressure cuff around an arm. I didn’t know I needed that, but when Stevie kissed my head, I melted.
I wandered up and down the hall at night when I couldn’t sit with the pain any longer. It was all a fog.
“You should be asleep.”
“I know. I can’t sleep.”
“You want some Xanax? I can call it in.”
Thursday night, I was alone in my bed. Besides anesthesia, I hadn’t slept in a week. I had been avoiding lying on my right side where most of the incisions were. They weren’t exposed or ugly. Dr. Garza had done a lovely laparoscopic surgery with small incisions that were covered in glue. The pain was on the right side.
Throughout the week, doctors listened to my abdomen with a stethoscope, “Plenty of noise in there. You’ll start moving soon.”
On Thursday night, it started to move, and I knew exactly where the cecum was. The world disappeared. I couldn’t hear or see anything. Everything was pain. I sat with it for hours. I couldn’t think of anything else.
Sadly, I think this is the part that is ineffable. Something changed in me that night. I could boil it down to something shallow like I no longer fear death. It’s so much more than that. There’s something about not being anything but pain. Something about that feeling that had terrified me my whole life. That level of pain – a mortal wound.
Somewhere in that pain is peace. I didn’t find it, and it didn’t stay with me. But I know what it is to know nothing but pain, and it was all right. I rolled over on my right side and pulled myself tight against the bed rail. I fell asleep.
When I woke on Friday morning, Dr. Garza was at the foot of the bed leaning against the wall. I could feel the door to the room closing as someone left. I was drenched in sweat and disoriented, folded into some impossible geometry.
“Hello.”
“Hello,” Dr. Garza said quietly. “I had a hard time getting into the room.”
That wasn’t the sentence I was expecting, and I had no idea what it meant.
“I had to fight the nurses to get in here. They said you were asleep for the first time in a week.”
I didn’t have anything to say. I was still arriving from somewhere far away.
Dr. Garza was still almost whispering. This really affected me. This wasn’t intentional concern. It was genuine affection and caring. I was really moved, “They physically restrained me and blocked the door. I’m really sorry. I had to wake you, because I’m about to leave town for the weekend.”
She paused, then laughed, “I don’t think I’v ever had the nurses block me from entering a room before.”
I laughed as well, “I guess they’ve seen me walking around the last few days. I must have looked pretty bad.”
We talked about the surgery for 30 minutes. She looked at the incisions and told me I was healing well. We went over the pathology report. She told me about the same oncologist that the Hospitalist had mentioned. I am fortunate to have stumbled into Dr. Garza’s care. She’s definitely one of the heroes of my life.
After she left, I thought about the nurses and how they had protected my sleep. It seems like such a small thing, but if you know anything about hospitals, you know they have very little regard for your sleep. They tell you to do it all the time. Then they come in and wake you up to take your blood pressure at 3am.
The nurses noticed that I was losing my mind and they were concerned enough to try to stop a doctor from coming into my room when they knew I was asleep. They must have succeeded previously, because I didn’t get woken up for vital signs or for the rounds with the resident and the interns. Some number of people had celebrated and protected my sleep.
The door to the room slowly and noiselessly opened. I watched the movement with some interest. I saw a hand on the wood. Then Camilla’s head peaked through the opening.
“Hello.”
Now if you haven’t picked it up from my previous descriptions of Camilla, I will tell you now that she is a very loud woman. She was very soft spoken that morning, “Hello. I didn’t want to disturb you if you were still sleeping.”
“It’s okay. I’m awake.”
“They told me that you were finally sleeping, so I saved your room for last. I’m done after this.”
“Yeah you can clean the room. Thank you so much.”
“Oh you’re welcome. And tomorrow is my day off, so it’s now or never. I like you, but I’m not coming to clean your room on Saturday.”
3 responses to “my life is hit by a truck part 5”
I am so sorry you are in such pain and dealing with cancer. It’s not fair. We pray for you daily. Know you are loved from your Jersey friends!!!!
Just to be clear, this is from the surgery in August. I’m in no pain right now. I’m just getting the story down.
Thank you for clarifying that. So very happy to hear you are feeling better!!!!