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.Continue reading “it is without end”
And your wise men don’t know how it feelsJethro Tull, Thick as a Brick
To be thick as a brick
I have always been restless. I could always feel something coming. Something outside the door. Something in the hallway. Something breathing life into another dark path only illuminated by the next step. I’ve always wanted to leave. To just get up and go…
And sometimes I have. Sometimes I have just walked out the door. I went to school in Boston. I did a section of the Appalachian Trail. I moved to Albuquerque. I moved to Hong Kong (with Justine and Iggy). Oklahoma City wasn’t the best way to disappear, but I do know that very few people came to us visit us there. So maybe Oklahoma City is the best way to disappear.
But it always seemed like something larger loomed. Like something I was missing that just seemed obvious. I would wander in the woods in New Jersey with that feeling when I was eight. That’s not that surprising. The woods in New Jersey in Sussex County where we lived are magical, steeped in history, trod by the heroes of the revolution and the native people with names like Lackawanna, Hopatcong, Netcong.
I have perfect memories of being by myself or with friends on a gray autumn day wandering up the mountain that started in our backyard. Yeah it was a hill, but don’t tell an eight year kid from Byram it’s a hill. It’s close enough my friend. I would wander up that mountain with the that chill on my face, Rip Van Winkle’s ghosts playing nine pin, and I’d feel a particular call to be leaving. Like I should be going somewhere.
Apparently my mother felt that call as well, because one summer day we left New Jersey for Houston. It’s a long way. In 1983, to a 13 year old, it might as well have been on the moon. I complained, but it did satisfy some wanderlust in a way that I wouldn’t have been able to describe or identify when I was that age. It was big. My life would never be the same.
A year or two later, we went back to New Jersey for Christmas. My mother, siblings, step father, and I agreed not to get presents for each other that year. It was too complicated. We all wanted to go back to participate in the family Christmas gatherings. My siblings and I wanted to see friends and cousins.
I spent a few days with the Bryson’s up in Forest Lakes wandering around in the snow and playing on the ice. Daniel Bryson and I went Christmas shopping at Ledgewood Mall one night. I saw a Footprints in the Sand etching that I thought I had to get for my mother. It seemed appropriate. I stared at it for a while. Then Daniel said, “Dude. Just buy it for her.”
So I did.
On Highway 206 in Byram Township,New Jersey just north of Lackawanna Drive, there used to be a trading post (whatever that means). There were a lot of Native American crafts there like totem poles and jewelry. At this store, my mother had an experience with a Native American ‘troll’. Now who knows whether it has any real ties to Native American mythology, but it had that same aesthetic as the Lenape tribe’s totem poles and jewelry. It had a log body obscured by straw hair that was drawn up tight around its face. It had a stripped pine cone for a nose with red dried berries set in acorn caps for eyes and hands clutching a pine cone. She bought it for me.
This ‘troll’ captured the essence of the magical spirit of the Northern New Jersey forest. The lakes, streams, rock outcroppings, piles of rotting vegetation and leaves. The comradery, mystery, and adventure of my childhood.
I often wonder what it would have been like to come of age in New Jersey, but not in a wistful longing sort of way. I wonder what it would have been like to have to go to work and become an adult in a land that I found magical. Would it have lost that magic?
I went to visit New Jersey last summer. It was still that magical for me. I kept that ‘troll’ until July of 2017 when I moved out of my house on 14th street. I just took a picture of it and threw it away.
Coming of age in Houston was different as Houston was never magical. Not in the same numinous qualities of the Northeastern Woods. Houston has magic that people bring in little pieces from everywhere in the world. A certain transience that I had never experienced before.
That ‘troll’ scared some of my new friends. I liked that our New Jersey magic could scare some Houstonians, but I never got used to not having a mountain in my backyard. Houston is flat and featureless. There is magic in the dirt, but the magic has no identity. We build monuments of urban architecture to substitute for mountains, and we destroy and rebuild anything old to substitute for the memories the transient culture didn’t leave behind.
Far from satisfying that restlessness, Houston made it unbearable. I wanted to be gone the day I got here. I think many of us mistake that feeling for a deep hate for Houston. I grew up hearing people say they couldn’t wait to move away. I heard myself say it a lot.
I think it is just the nature of Houston to create that kind of culture. It was a crossroads in a malaria infested swamp. One road led to Galveston from what was north, and the other road went between New Orleans and San Antonio. People may have stayed to see what there was to gain, but they probably moved on.
Houston wasn’t very big when we arrived, but it had that big city drone. It’s always felt like an enormous city. And now it’s growing into that feeling.
For me, that big city drone came with a rhythm. A beat. It was constant. I felt it everywhere. I couldn’t sit at home. I wanted to be moving all the time. This got me into a lot of trouble. But still, even when I leave Houston, it’s a rhythm that comes with me. I thought I’d never be able to shake it.
Then I got cancer.
Leading up to my liver surgery at MD Anderson, I could definitely feel that rhythm. I was moving my body to it as I worked out for four hours a day. As I changed to a vegan diet. As I made arrangements with my friends and family. Even as I had chemo treatments through the fall. The day Troy picked me up and took me to the MD Anderson Cancer Center for liver surgery, that rhythm was silenced.
In August, when I arrived at the St. Joseph’s Emergency Room bleeding out of my ass, modesty never occurred to me. I was in the middle of a medical crisis. All modesty left the moment I took off my pants and dumped blood on the floor.
Throughout that stay at St. Joseph’s, it never occurred to me that my ass was exposed or that I was giving everyone a show every time I sat down in bed. That first night, Ashley and Troy sat in the room with me cracking jokes as I drank the bowel evacuation drink. The toilet was separated from that ICU room by a curtain.
My arrival for surgery at MD Anderson Cancer Center was completely different. We arrived at 4:30am. There is the check-in, where you get a number. Then we sat in one of the flower-named waiting areas (MDACC likes these flower named waiting areas. They are all over the hospital.). This one was called geraniums.
There are a lot of people being treated at MD Anderson. The Houston Medical Center is enormous. MD Anderson is just one of many hospitals, but MD Anderson is itself made up of several gigantic buildings connected by skybridges and tunnels and parking garages. It would be easy to assume that these buildings were the result of over-zealous planning, but they are not. MD Anderson is packed with people getting treated for cancer from all over the world.
The waiting areas filled up slowly but steadily. Hundreds of people with family. After about ten minutes, a woman walked to the center of these enormous waiting halls for the cattle call.
“If you have checked in for surgery, please move past the check in desk and find the room with the number you were assigned at check in.”
She repeated this a few times as we all made our way to our rooms. In the room, another person came in to give me instructions and a hospital gown. She left, and I started to change my clothes with Troy sitting there. I think I made some awkward comments about not being at the level of immodesty I had at St. Joseph’s. I don’t know why this part of the story is significant to me.
Years ago, I wrote about Justine giving birth to Iggy. Birth is quite an experience, for everyone. Of course, it was a big deal to Justine. Then there was me, I had never witnessed a birth. There was the doctor, the midwife, the nurse, the doula. I think it is a profound experience every time. Maybe even addictive for a doctor or a midwife.
Women have this level of exposure at some of the healthiest times of their lives. A woman will give birth with many sets of eyes watching a new life emerge from her genitals. It’s amazing and wonderful. Men never experience this.
I have no greater insight into my own experience as an analog to birth. I just know that at some point, we are open to many sets of eyes. I could try to hide my experience with cancer. Just keep my mouth shut and wait for the other side. Death or life.
I remember thinking about Justine being exposed and whether it mattered, but really all of our secrecy is just a part of a social construct that we participate in or avoid. Either way, it is a part of us.
My point is that when we are incapacitated, or truly humbled, we forget the social construct, the contract, that we have with society. When we are completely dependent on the care of others, when all logic has left the situation, we definitely forget that our junk is hanging out for all to see. What is left of us when there is nothing else?
Addicks Reservoir is a 26,000 flood plain on the west side of Houston to the north of I-10. It contains a number of very large parks like Bear Creek Pioneer’s Park. A lot of the non-park land was used for grazing cattle in the 80’s. I don’t know if there is still cattle grazing. I did see that goats were re-introduced to the reservoir in 2019 to eat the overgrowth of weeds.
Psilocybe Cubensis is a species of mushroom that grows out of cow shit. Magic mushrooms. In 1985, when I was 15, these mushrooms grew all over Addicks Reservoir, and Addicks Reservoir was a ten minute drive from our house in Spring Branch.
My friends and I would drive out to the reservoir on Clay Road and park on the shoulder. Then we would find a suitable place to climb over the low barbed wire fence that contained the cattle. The brush was thick, so it was difficult to find a place through from the road. Getting over the fence was tricky, but easily accomplished with one person holding a space open between the wires.
It was best to go early in the morning after a rainy or foggy evening. The mushrooms were easily identified by their gold caps growing out of piles of cow shit. Because many species of gold capped mushrooms grow out of cow shit, a secondary confirmation was achieved by thumping the cap with a finger. If the cap bruised purple, it was psilocybe cubensis. I don’t ever recall going to Addicks Reservoir and not finding any mushrooms. In fact, we would just give up after a while having found more than enough.
I never really had a bad time with these mushrooms. In fact, I had some character shaping experiences that I cherish. One hot day, I spent an entire day walking four miles to get home with my friend Robert. It’s one of my happiest childhood memories.
With experiences like that, you’d think I would have pursued psychedelic drugs as an adult, but these drugs definitely have a stigma. After remaining drug and alcohol free through most of my 20’s and into my 30’s, any thoughts of experimentation with drugs were completely outside of my thought process. Mushrooms never crossed my mind in any tangible way.
When I was diagnosed with colon cancer in August, as each medical professional stopped by my room to deliver the news and/or offer consolation, there was some common advice. Get an oncologist and a liver surgeon. Then there were tonics and laxatives and natural remedies written on post-its from the cancer survivors among them. Without fail, they all recommended that I see my general practitioner to get a prescription for an anti-depressant. Specifically, a SSRI.
I have taken an SSRI, Paxil. It really helped me at the time. It gave me a break from anxiety and depression that I needed at the time. For me, Paxil provided an example of what it feels like to feel better that served as a goal when I stopped taking the drug. But I hate the side effects. Once chemo started, I couldn’t imagine mixing the side effects of the chemo with the side effects of the chemo. I went to see my general practitioner, Dr. Kuo, anyway.
“I have colon cancer.”
“Oh wow. I was not expecting you to say that.”
“Yes. I went into St. Joseph’s in August with an emergency and ended up staying eleven days. They removed half of my colon.”
Sometimes, medical professionals forget that they are talking to a patient and just start spewing things that maybe they shouldn’t say. Sometimes, you can even see it on their faces – the why-am-I-saying-this look. I have actually come to enjoy these moments. Doctors spend a lot of time in school. I know there must be a lot of discussion about what to say and what not to say, but they are human beings. Every now and then, an unexpected piece of information will throw them off and their mouths start moving while a secondary mental process tries to figure out what they should actually be saying.
“My brother has colo-rectal cancer.”
Dr. Kuo proceeded to tell me about how terribly painful the radiation treatments have been for his brother. I had not started chemo. I wasn’t even sure how they were going to treat me. Radiation seemed as likely a scenario as any. I listened to the whole story because the information was unexpected, and I didn’t know what to say.
When he was finished, there was an awkward silence. Then I said, “I came here because I have been told that it would be a good idea to get a prescription for an anti-depressant. I don’t need it right now. I seem to be handling this pretty well, but I’ve never done chemo. I have no idea when I’m going to need it. I also thought it would be a good idea to let my GP know what was going on.”
“Yes. Of course. I will make a note of it. Call me to make an appointment when you need it. Also, don’t wait too long. You don’t want to be suffering for too long. Cancer treatment is a long road.”
Cancer treatment is a long road. Yes it is. And it leads all over your life. There is no end to the tangential journey. Everyone I have ever known. Every experience I have ever had. They all come back.
Sometime in the middle of the third chemo treatment, I was watching Apocalypse Now with Troy. I have seen this movie at least 100 times. The meaning changes over time. This time, in the middle of chemo, watching Lance wander, full of wonder, along the trench after dropping that last tab of acid he’d been saving, a couple things that I’d read over the years jumped into my head.
“I read somewhere that Johns Hopkins has been doing research with psychedelics on cancer patients.”
“Yeah I heard a guy on Joe Rogan talking about that.”
“Ya know, they told me to go to my general practitioner to get a prescription for an anti-depressant. So I went to see my doctor. As I was sitting there, I really got okay with the fact that I didn’t want to do that again. Now that I have started the chemo, I’m really convinced that I’m right about that. I’d be better off dropping a bunch of acid and see where that took me.”
“But maybe I should just drive out to Addicks Reservoir to pick some mushrooms. They weren’t as intense and I remember I just felt okay. I mean I’m doing all right, but I’m okay with this being a little easier. Maybe even a little high or something. I’m not toughing out the pain to make a point or anything like that. I just don’t want to mix all those fucking side effects. Mushrooms at least I know they are clean. I never had any side effects.”
“Hmm… I wonder how you find a supplier. I heard there was some company in… I want to say Colorado… that is making a tea or something that you can buy.”
“I read somewhere that Colorado recently decriminalized the possession of psilocybin, so maybe that’s true. I don’t know. I just know I’d be a lot more comfortable doing mushrooms than an anti-depressant.”
A week later, I was having a conversation with another friend about the possibility of taking mushrooms. He told me about a book he was reading by Michael Pollan called Change Your Mind. I ordered it while we were on the phone. It just so happened that the book and the mushrooms arrived at my apartment on the same day.
The mushrooms were actually psilocybin truffles. A small bag of raisin sized nodules. I didn’t touch them for weeks. I read the book and continued treatments. I read more about micro-dosing online and discussed it with friends.
I also discussed the possibility of micro-dosing with my psycho-therapist. I hadn’t seen her in close to a year. There was the usual catching up. I have cancer. This is what happened. This is where I am now.
“I was told that it might be a good idea to get a prescription for an anti-depressant since the treatments can beat you down pretty hard.”
“I can see why doctors would offer you that insight,” she said skeptically. I seem to choose my mental health professionals based on their skepticism of prevailing wisdom around psycho-pharmacology.
“I am really not looking forward to more side effects. I have been thinking about micro-dosing psilocybin. Mushrooms.”
“I’m not looking for permission. I just thought it would be a good idea to talk to my therapist about this before I did it. And perhaps you would have some insight that might sway me one way or another.”
“I’m not sure that I do, but it is interesting.”
“I have been reading a book on the subject, and I am feeling more comfortable with the idea all the time. I had no idea that there was this much research going on around psychedelics and cancer.”
“Really? What book are you reading?”
“The Michael Pollan book. Um… I can’t remember the name of it.”
“Change your mind. Yes. One of my patients gave me the book not that long ago. I haven’t gotten around to reading it yet. I will put it on the top of my stack.”
“Wow. That is amazing. I haven’t thought about mushrooms in forever. Now I’m finding that it’s almost mainstream. I haven’t done them yet. I just wanted to tell you about it before I did it.”
“Well I will be very interested to think with you more on this subject when we meet again. When is your surgery? Do you want to schedule more appointments?”
We scheduled a slate of appointments leading up to and shortly after the surgery.
Then one day, I just did it.
I took about two raisin sized truffles sometime in November. I wasn’t on a quest to get high or even to have a profound experience. I just wanted to see if it was easier to maintain a feeling of well-being. That dose was a little too much, because I definitely felt it ‘kick in’. The lights changed and I felt a little more buoyant. It was a good evening, and that night, I slept more easily and for longer.
The next day I took one raisin size nodule. I didn’t get high at all. I continued doing this every morning. I would often forget to take the doses with very little to no consequence. The effects were subtle.
The thing I noticed over time was that it was easier to stay on the tight rope. It is difficult to stay in that very narrow line of thinking between hope and despair. I easily drop off into either side. Psilocybin didn’t keep me from falling off. It just made it easier to get back on.
“You look great,” can lead to a false sense of hope. I have a long way to go. I spend a lot of time visualizing what remission looks like, but I keep myself from thinking of it as a foregone conclusion. This keeps me working toward a goal.
Feeling beaten by cancer treatments can lead to a spiral of despair. I am already dead. There is no point in carrying on. And a whole bunch of other maudlin shit.
I still hit those highs and lows. Since I have been taking the psilocybin, it’s just easier to get back to that narrow line of thinking. It’s easier to tell myself to do the right thing. It’s easier to recognize when I am starting to stray before I go too far.
Every now and then, I do a little too much. I see these times as a bonus. I have been able to find some peace with mortality. I have been able to examine my life with some detachment. I’ve been able to just enjoy some visual hallucinations and some vivid dreams.
Leading up to the liver surgery, the truffles were a really great tool. I achieved an almost trance like focus on preparation and a meditative peace with the odds.
On January 2nd, I had my last therapy appointment before the surgery. I must have had some instinct about this appointment, because I set three reminders on my phone for 24 hours, 8 hours, and 1 hour. I still missed the appointment.
I was walking around the track at Memorial Park somewhere in my fourth mile when my phone rang. I did not recognize the number, but I answered it anyway. As soon as I heard Victoria’s voice, I realized that I had missed the appointment anyway.
“Oh shit. I set like three reminders for this appointment. I still forgot it.”
“Well maybe you just knew you weren’t going to want to come.”
“Well I have been withdrawing from everyone. I’m just trying to do prep.”
I happened to be crossing Memorial at the time to the south side of the park away from the crowds. I suggested that we just do the appointment over the phone. Victoria agreed. I wandered off into the woods while talking. It was wet and just getting dark. I don’t remember much of the conversation. If anything, it was just a reminder that I had done everything I needed to do. I’m pretty sure that I have never been more thoroughly prepared for anything in my life, but I was also profoundly disturbed.
What is left of us when there is nothing else?
I actually remember nothing after changing into the hospital gown and lying on the gurney. I remember little about post-op. Just some vague recollections of medical professionals looking busy.
After being moved to the Post Anesthesia Care Unit (PACU), I don’t recall any pain over a seven. My abdominal discomfort was minimal. I was definitely not all there, but I was okay. Troy and my mother were there. I didn’t talk to either of them very much except to comment on whatever they were saying. I remember an account of Dr. Tzeng coming out to report on the results of the surgery.
“He came out and he said that they only took 10% of your liver and that they didn’t need to take your gall bladder at all.”
“Wow. Really? No shit.” I felt around for the drainage tube Dr. Tzeng suggested I might have when I came out of surgery. It was not there.
“Yeah he said your liver looked really good.”
“Really?” Dr. Tzeng sounded like he had been downright effusive.
“Yeah he said there were no surprises and that he was able to close everything up very easily.”
Troy left sometime in the afternoon. An hour or so later my mother left. She was just too tired. I wasn’t going anywhere. I felt stable even though I was still trying to get my bearings. I certainly wasn’t going to be much of a conversationalist. That’s when the reflux started.
A paralytic ileus can occur anytime after the administration of anesthesia. Some people are more prone to it than others. I think that a lot of people just opt for the opioids to get them through to the other side of the paralytic ileus. That is not an option for me since they don’t work, so I get to experience all of the joys of what happens to your body when your bowels stop working.
My stomach filled with acid and splashed up into my throat. I washed it down with water, which filled my stomach with more fluid that just wanted to come up. Lying down was just making it worse. I was going to have to up.
I was asking to be up on my feet by 6:30pm. I stood for thirty seconds and sat back down. An hour later I wanted to be up again. I needed two people to accomplish this each time since I still had a catheter stuffed up my penis, a heart monitor with twelve leads, three IV’s including an arterial line for continuous blood pressure monitoring, and an oxygen monitor on my finger. I was a goddamn pin cushion and they weren’t going to start removing things just because I wanted to be up like they had when I was at St. Joseph’s. They wanted 24 hours of continuous monitoring.
The twelve hour nursing shifts changed at 7pm. I made the new nurse, Monica, and the nursing assistant, Solomon, an imposing but affable man from Cameroon, unhook all that equipment, hang it from the IV pole, and follow me around the nurse’s station four times over that shift. It might have been five times. My ass hanging out. My junk exposed with a catheter tube. I walked around that nurse’s station at least five times each time I got up. One time, I went twenty-one times.
I didn’t care. I couldn’t lie in bed. My abdomen hurt, but the discomfort of the reflux was far worse. This conversation happened during the second set of laps around the nurse’s station.
“It’s always good to have a pain medication lined up.”
“I am on the muscle relaxers. Right?”
“Yes, but you are also on the nerve blocker.”
“The nerve blocker. It’s like an epidural, but it’s local. The anesthesiologist finds the major nerves in your abdomen, then they apply the nerve blocker over those nerves before they cut through them. That’s what the gray bracelet on your left wrist is for. It tells people not to put another local anesthetic on before this one wears off.”
“Oh yeah?” Monica nodded, “How long until the nerve blocker wears off?”
“Wow. That’s pretty awesome.”
“Yeah. But if it wears off and you have a lot of pain and you don’t have a pain medication lined up, it could be bad.”
I stopped walking, “This is going to get annoying.”
Monica stopped walking and looked at me, maybe for the first time, “I’m not going to do an opioid. They don’t work for me. I am not in pain. Do you have any ideas for a pain medication that is not an opioid?”
“A muscle relaxer.”
“I’m already on two. You gave me one through my IV when you came on shift.”
“They gave me those by mouth when I first woke up. I imagine you’re going to give me some more of those in a few hours.”
“I’m sorry sir. I just don’t want you to find yourself in a bunch of pain in a couple days when the blocker wears off.”
“Well I appreciate your concern,” I paused, weighing how I was going to say the next part. “But I don’t believe that’s why you want me to find a pain killer. I’m a pain in the ass right now, and you wish I’d go to sleep.”
Monica started laughing. It was a tired laugh, but it was a laugh. The first connection I had made with her. I felt the night from her perspective. Through the holidays, I was preparing for this surgery. Maybe the holidays happened for me, but liver surgery was always right there. Every conversation, Christmas light, gift, conversation… For Monica, she relished every day off. Every slow day at PACU. And they were slow. No one wants to give or get surgery through the holidays. She was tired. First day back to the cattle call of surgery.
Poor Monica and Solomon. They hit the lottery with me. I joked with them the rest of the night about what a pain in the ass I was.
Troy was there at midnight and 2am following me and Solomon around. Troy just keeps coming back. I have no idea how I ended up with such a wonderful friend. I really don’t. I am so grateful for Troy, but I could see that he was nearly asleep on his feet as well. I’m even a pain in the ass to my friends.
“I’m sorry man. I just can’t lie there.”
“That’s not why I’m here man.”
“I’m not here to get a comfortable night’s sleep in a recliner at the hospital. You don’t need to be a great conversationalist. I’m not here to be entertained.”
I must have fallen asleep for a minute between 5am and 6am, because Troy was gone. I felt like he was there. I felt like I could hear him breathing, but when I hit the call button to walk again at 6am, I turned to look and he was gone.
Strangely, I felt like Troy was there the entire time that I was in the hospital. I didn’t have anything to say to anyone those first two days after surgery, so it was an illusion easily maintained.
“Solomon you look like you could fall asleep right there.”
Solomon’s accent reminded me of a friend in Boston who was also from Cameroon. It was soothing, “Oh Mr. Larry. I know that’s right.”
“I’m sorry you hit the jackpot with me Solomon.”
“Thank you for apologizing. It is way past my bedtime. You really are a funny man. You know that?” This was the last time I was up when I hit twenty-one laps. We were passing Monica sitting at a workstation looking like she needed a caffeine IV. “Hey Monica. This is lap seventeen.”
Somehow Solomon was able to be polite, self deprecating, complementary, insulting, and sarcastic in one breath. I was super impressed. Monica has one of those infectious laughs that I cannot resist. My abdomen hurt quite a bit, but I couldn’t stop. Solomon started laughing and moved to support me at the same time. Monica nearly fell out of her chair.
After Monica and Solomon, there was Pam. I don’t remember anyone else. They were all awesome. I love MD Anderson so much. There was a woman with a safety video. I was sitting in a chair writing when she came in.
“Hello. Can you tell me your name?”
“Lawrence Lines,” this was followed by the usual questions.
“What you got for me?”
“I have a safety video that we strongly suggest you watch.”
“Outstanding! Give it to me! I want to see your safety video!” I was really losing my mind. I was starting to just blurt stuff out.
She laughed, “I don’t think I’ve ever gotten a response like that.”
“Well I’ve worked with Health, Safety, and Environment people on drilling rigs. They always have to deal with the big sighs from all the people coming to the rig. People from the office are always so dismissive of the rules like they don’t apply to them. Ya know: Do you have steel toe boots? A hard hat? They’d always be surprised that they wouldn’t be let on the work site without the gear. The HSE guys would send them away.”
This was apparently quite a mouthful coming from a guy sitting on a chair clothed in only a hospital gown with a catheter full of urine coming out from under it. She tried to laugh without appearing to be laughing at me, “Well it’s a pretty terrible video.”
“They always are.”
“Well they didn’t ask me to be in this one either because it was made before I was born in the 80’s.”
“Oh wow. This is going to very good. Could we dim the lights? Do you know who wrote it?”
“Oh nevermind. I’m sure it’s a masterpiece.”
I learned to know that Dr. Tzeng was coming because the nurse’s station would go quiet. He just has that presence. Then you hear the greetings.
“Good morning Dr. Tzeng.”
“Hello Dr. Tzeng.”
The door opened and there was Dr. Tzeng and Whitney the Nurse Practioner, and the Fellow Dr. Zafar. I don’t know what any of this means. There are several ‘Fellows’. He has a Nurse Practioner. I know the men by their titled last names and the women by their first names followed be a title: Dr. Zafar, Dr. Tzeng, Whitney the Nurse Practioner, Pam the Nurse, Monica the Nurse. The nursing assistants just get first names like Solomon. I can’t imagine the care hierarchy, or the political hierarchy, of MD Anderson is easily comprehended by the people that work in it, let alone the people being treated by it. But why do the male fellows introduce themselves as ‘Dr. Zafar’ and the women introduce themselves as:
“I’m Nancy. I’m one of the Surgical Fellows.”
I’m not going to speculate, but it is interesting to note.
Dr. Tzeng stuck his hand out. I took it. With Dr. Tzeng, every greeting and every goodbye is preceded by a handshake. I like this handshake. There is something both formal and informal about it at the same time. There is the establishment of contact, a peer to peer relationship, pause, respect.
If you can’t tell, I like Dr. Tzeng a lot. From the beginning, he projected confidence. He is not vague. His instructions are clear. His reasoning is rational. He also looks like a cross between two Chinese martial arts instructors I had in my twenties. One here in Houston, Sifu Chu. The other in Albuquerque, Sifu Lin. He sounds like Sifu Lin, which made his pre-op instructions very easy for me to follow. He told me what to do, and I did it.
“How are you, Mr. Lines?”
“I am okay.”
“Are you in pain?” This question sounds different coming from Dr. Tzeng. He doesn’t want to know about my pain scale number. He wants to know if I’m feeling something I call pain.
“No. I am not in pain.”
“Really?” Dr. Tzeng smiled.
“If I stand up, it hurts briefly.”
“But just lying here. No. It’s just the acid reflux. I am extremely uncomfortable.”
“Well the acid blocker should help with that,” he looked around at Whitney.
Whitney looked at her clipboard (Whitney was very pregnant), “Protonix.”
“Yes that should help.”
“That’s an acid blocker?”
“I’m sure that acid production is blocked in my stomach. But I need something to neutralize the acid in my stomach. I don’t feel any pain except in my throat. I burp. My throat burns. I wash it down with water. My stomach is too full because my bowels aren’t moving. The water makes me burp more. I drink more water.”
“Yes. Your bowels go to sleep from the anesthesia.”
“Yes. I know. This happened when I had the hemicolectomy as well.”
“Well we can’t give you any more acid blockers.”
“Yeah. I don’t want a blocker. I want a neutralizer.”
“Try not to drink as much water. Maybe some ice chips.”
I gave up. I had tried to explain this to every nurse and doctor that I had seen since I had surgery, but no one was getting it. I am not sure of the cause of this communication problem. I cannot be the first person to experience this problem. If your bowels stop moving, your stomach will not empty. You will have heartburn. In those first hours and days after surgery, the objective seems to be to give you a bunch of drugs so that you’ll be asleep for this acid party in your throat.
If you complain too much, “Do you know what an NG Tube is?”
I know what an NG Tube is. They take a tube and they shove it through your nose, down your throat, and into your stomach. When it was described to me at St. Joseph’s, it sounded horrific. Now with the catheter in my penis, three IV’s, and a heart and lung monitor, I imagined myself walking around the nurse’s station with an NG Tube through my nose. Solomon would have a field day with that.
In any case, I have never felt like I was being completely understood on the reflux. I have issues with the way almost everything is communicated in a hospital. I think language should be way more specific when the stakes are so high, but there’s also a division of labor. Where there is a division of labor, usually the lowest common denominator wins.
“What do you want for the pain?”
When I was in treatment in the 80’s, my doctor fighting to keep me off of, and therefore independent of, psychotropic medication, I remember him explaining the reasoning behind his and the hospital’s positions.
“I want you to stay off of the medication first because I don’t think you need it. Even temporarily. You are able to hold a coherent conversation. You are able to sleep at least some. Then if you are on the medication, I can’t treat you because I’ll be talking to the medication. You’ll be a product of the medication. Also, you may become dependent on a medication you won’t need later. Then we’re fighting a substance addiction problem that we didn’t have to begin with.”
“They want you on the medication because they think it will ease whatever withdrawal symptoms you may have. Then they think that you are unpredictable without the medication and may become violent maybe. There are other patients. The staff. So safety concerns. If there isn’t something at least ordered for an incident, then they can’t actually give you anything until we have a discussion about it. My argument is that I can’t order a medication for symptoms that don’t exist.”
I thought about this and seventeen year old me said, “Medication is for the convenience of the staff.”
This experience with an inpatient psychiatric stay when I was a teenager informs my opinion about prescribed and over the counter medications. I’d like to say it was all well thought out like this, but some of it is actually anxiety as well. It’s a little baffling how I could have been the type of drug user I was as a teenager and then became the type of patient I am as an adult.
“Here take this.”
As a teenager, I would take the pill, put it in my mouth and swallow it. Then I would ask, “What was that?”
Under clinical conditions, “What is it? Why am I taking it?”
Then there is the contradiction even in my current life. I will drink a bottle of wine with no thought to the consequences, but I will wrestle with the concept of taking an Ibuprofen for a headache that the wine gave me. Perhaps it’s because I know why I prescribed the wine to myself. I wanted to change my mood by drinking a delicious beverage. The wine later causes a headache. An Ibuprofen is suggested.
An Ibuprofen is anti-inflammatory. On the surface, it seems to make sense. I have a headache because of inflammation caused by the wine. The Ibuprofen reduces the inflammation. The headache goes away.
But I just drank a bottle of wine. It seems like throwing water in the ocean to take a couple Ibuprofen in the face of the inflammation I just caused myself. The wine caused my body to use the fluid in my body in a different capacity. It makes sense to me to drink more water, and of course, I should be hydrating while drinking alcohol anyway because this is well known.
It sounds like total nonsense that people keep talking about the acid blockers I am already on while acid bubbles up into my throat. Let’s do something about the acid in my stomach. You can’t tell me that an NG Tube is the only thing available, and that outside of that I should take the opioid every other red blooded American accepts post operatively and just go to sleep. So I guess people that tolerate the opioids well just don’t feel the acid burn because they are high and asleep. Then when the bowels finally wake up from the anesthesia, the patient just wonders about that sore throat.
“Oh you know a lot of people experience dryness and soreness in their throats after surgery.”
And what about the fact that opioids slow down your intestines? So the intestines are asleep from the anesthesia, and now we throw opioids on top of that. I am a little disturbed by this formula, and it doesn’t seem to add up. If I was only talking about my experience at St. Joseph’s, then I wouldn’t be so taken by this subject, but I have now experienced the same bias toward this solution at MD Anderson.
Medication is for the convenience of the staff. Yes I know that I’m also a weirdo. Given a choice between no solution for pain and discomfort and being able to check out mentally on the pain and discomfort, the overwhelming majority of people are going to choose ‘check out mentally’. I don’t have a problem with this choice.
Dr. Tzeng continued, “Can I see the incision?”
“Yes. Of course.”
The exam continued. Dr. Tzeng told me about the condition of my liver. I appreciated every other part of our conversation. I feel like this team performed a miracle on me. A miracle they spent lifetimes preparing for. Dr. Tzeng shook my hand.
Whitney said, “I’ll come back to follow up with you in a bit.”
An hour later, Pam the Nurse appeared at my bed with a packet of Tums. I was ecstatic.
“That’s exactly what I wanted.”
“Well the order just came through.”
“Oh. No kidding. Wow. I am so happy.”
Tums. A hospital full of one thousand dollar medications, and the solution is Tums.
Whitney came back in the afternoon. I could tell it was Whitney, because her stomach arrived before she did. She was very pregnant. She asked me a bunch of questions about comfort levels, nursing staff, pain levels.
“Oh and did you get the Tums?”
“Yes. Holy shit. That did it.”
“That was a gift from me. I am eight months pregnant. Tums are my friend.”
“Oh wow. I guess that makes a lot of sense. You have some reflux.”
“I can’t eat anything. It’s like the baby is sitting on my stomach pushing acid into my throat.”
“Jeez. It made such a huge difference. I’m still gurgling fluid, but it’s not burning me.”
“Yeah. We can’t stop that. Your bowels are going to have to wake up.”
“I get it. I’m just glad that it’s not burning me.”
Whitney left. My rant above is still relevant. I think the conversation about pain has to change. It’s not my mission. But I have experienced a little of the fallout of the current discussion between patient and staff, and I did not like it at all. I am so grateful that Whitney heard me and ordered something that worked. It seems like it should be part of the surgery protocol. Maybe it is at other places. I have no way of knowing.
I cannot overstate the amount of discomfort caused by acid reflux and an overly full stomach. Even the Tums didn’t remove the fluids from my stomach. I didn’t speak for much of the first sixty hours I was in the hospital. I was so uncomfortable that I couldn’t really follow much. I thought about my stomach all of the time. I also didn’t sleep much. I would wake up choking.
In the room was a clock on the wall at the foot of the bed. It was just a standard white wall clock with black hands and numbering. There was an additional circle of red numbering for the twenty four hour cycle of numbers. It ticked as the second hand went around. All night. All day. The clock moving. Slowly. The clock drove me to walking the halls. Especially after they took the catheter out and the monitor was removed. They even removed one of the IV’s that tapped into an artery to provide continuous blood pressure support.
This meant I could get out of the bed on my own. So I did. A lot. I would walk until I was so exhausted that I couldn’t help but sleep for an hour. Then I’d sit and listen to the clock. Troy was there a couple times a day and at last six hours every night.
“What is that noise?”
I looked at him. It must have been 3am.
“What is that noise?”
Troy looked a little scared, “Um…”
I sat and thought about it and concentrated on the sound. Suddenly I had it, “It’s the clock!”
Troy laughed nervously. I’m pretty sure this played out more than once. I remember it with Troy there probably because I was little embarrassed that I had to work out the sound of a clock ticking when I was staring at the clock. I know there was more than one occasion where I was having a conversation with Troy and he wasn’t there.
“I don’t know what’s happening to me.”
“What do you need?”
“What do I need?”
“I don’t know.”
I turned to make eye contact with him, but he wasn’t sitting in the chair.
I would like to blame the room, specifically the layout of the room, for these episodes and what was to come. But I’m pretty sure there was something else at play.
I dreamt of the Lenape troll. In the dream, it grew legs and its eyes glowed. It shoved sticks through the skin of my abdomen into my liver.
From the day that the first CT Scan was taken at St. Joseph’s four months earlier with its undefined lesion on my liver, I knew I was going to have liver surgery at some point. As the picture of my cancer became more defined, I dreamt of this procedure regularly.
There was the hard boiled egg version of the dream. The doctor cut into my liver through the gelatinous liver flesh uncovering a tumor that looked like a hard boiled egg. He cut it in half exposing the sickly gray yolk. There was the version where the doctor exposed the tumor and then used a spoon to remove it. There was the version where the doctor cut into the liver then took a handful of dirt and rubbed it in. This was the only version where I felt pain until I had the dreams in the hospital with the troll.
Every organ seems to have a metaphorical version. The metaphorical heart loves and is committed to a thing or a person. The metaphorical spleen is associated with anger. The metaphorical colon can be associated with ‘intestinal fortitude’ – courage, tenacity, endurance. What the hell is the metaphorical liver?
The liver cleans up what we put into our bodies. Alcohol, fats, starches, drugs… They are all dealt with in the liver. Is the metaphorical liver about the garbage we allow into our lives or what we allow ourselves to be exposed to? When I had half of my colon removed in August, a physical sensation that I called depression was removed from my body. I wonder how long I had relied on my colon to endure things that were uncomfortable because I didn’t have the courage to do something about what I those things I had allowed to be in my life. I wonder about the complicity and complacency I had with my own moral standards.
I don’t bring this up to find a real cause for my cancer. Just a metaphorical cause. I’m not sure that it means anything, but in relating the experience of a clock, my four month subconscious obsession with my liver manifesting itself in dreams, and the return of the Native American troll to my consciousness, I felt driven toward the detritus of my life. I thought many times in that bed: “How is it that I am nearly fifty, and I have not written a book?”
The troll always seemed to present itself for this internal debate. It didn’t seem to understand how this could have taken place either.
“Let’s look at your liver. Larry Fucking Lines, is this your liver?”
Then the troll shoved a stick in my liver. Through the skin. I felt the stick.
“What circumstances would you actually tolerate to give up that much of your life doing things other than what you felt you were born to do? Which mountain stream have you abandoned? Which magical stone outcropping? Which love of your life? What carrot were you chasing through ‘the streets at dawn looking for an angry fix’? Which unclaimed minutes did you sacrifice at the altar of complacency? How many rain-checks have you issued to late night discussions over coffee in a well lit corner of a darkened world that went nowhere and meant nothing but made the whole rat race worthwhile? Is this the beach that you will die on – ‘starving, hysterical, naked’?”
The troll had turned into a beat poet that shoved sticks into my liver and questioned my life choices. His eyes glowed. He was not ominous or scary. He seemed genuinely concerned. Perhaps he had been asking me these questions all along, and I had been relying on my liver to make him go away.
These are real questions. There are so many answers. Real answers. Life happens. I don’t even have to let it happen. It just moves on with me riding on the crest of its waves. Sometimes I am happy to be at the crest rather than the trough. Sometimes I am happy at the randomness of life’s gifts. Sometimes I intentionally sacrifice one thing for another. Sometimes the rewards of one sacrifice are so great that the sacrifice doesn’t seem sacrificial.
But the metaphorical liver wants to know if these things measured up over time. Eventually I had to reckon charges versus the credits to get a real life balance. Cancer seems to be doing that for me. For the purpose of my stay in MD Anderson to deal with the damage life has done to my metaphorical liver, that troll is the accountant. He needed to take some form, and he seemed to ask, “Was it worth it?”
As the effort to narrate this event in the unfolding dreariness of my cancer treatment with its continuous insults and barbs, the troll appeared to compare the dreams of a boy with the accomplishments of a man and the man fucking fell short. He just didn’t measure up. The hills and the magic and the leaving and the loves lost and shortened arrivals and abbreviated efforts at deeply meaningful cornerstones of my identity. It nearly killed me.
This surgery was the focal point of my existence from the moment I left St. Joseph’s hospital. I was certainly more introspective during this stay than I was at St. Joseph’s. Maybe more introspective than I’ve been since I wandered around that mountain in my backyard on a cold fall day with the wind stinging my cheeks.
I have been searching for a rock outcropping in my life where I can have my head above the trees and see the splotches of color in the countryside. To feel the damp chill of a gray fall day on my face and know that this is the day that I will leave. This is the day I will leave and it means something. Maybe that meaning accomplishes nothing but setting free a metaphorical boy from the stifling confines of a modern adult life. It’s just such an odd discovery to find that rock outcropping is cancer and that cancer won’t kill me. It’s life that will kill me.
By Tuesday night, I was really having a hard time knowing whether the interactions I was having were real. I had multiple hallucinations where I was talking out loud to Troy as I walked around or as I was lying in bed – only to turn around and find that he wasn’t there. At other times, I would be sitting in silence for hours and then turn to see him there. I slept for a few hours. I had a dream where I conversed with a twelve year old me with my weird haircut and fat cheeks.
“What did you do with your life? My dreams?”
I listed some things, but they were more like images than words. School. Music. Work. Relationships. Children. Caught up in my own accomplishments, I forgot that I was answering a child’s question.
“Did you write a book?”
“What? No. I haven’t. Not yet.”
He took on more of my own voice, “I only wanted one thing. To write a book. One thing. You are 50, and you haven’t written a book? We are 50? You haven’t written even one book?”
Then there was a plant on a windowsill (later found to be born from a photo sent in a text from emilie). A washed out desert landscape outside the window. The plant had long thin curly leaves that grew in spirals to fill the entire window casing obscuring the light. The remaining pinholes of light turned into glowing eyes that provided a disturbing comfort. I found myself lying in the dirt beneath the plant with eyes open staring up into the leaves. Waiting…
I woke up sweating. I got out of bed and walked for an hour as the floor woke up. There were no familiar faces on the floor. It was a little disorienting.
This conversation with myself has been ongoing since August. This reflection on every aspect of my life. This measuring of my accomplishments against the things that I wanted when I was a child. The dreams. The magic of a place. The history of connection. The non-cynical version of me. How much have I compromised? To how much have I remained true?
I have had a very good life full of good things and good people. I have often done the things that I wanted to do. But I can totally see that you-had-one-job concept about writing a book being true. I could answer that complaint with foolproof adult logic.
“Exactly what kind of book did you want me to write?”
“The kind with words you fucking moron!”
I have been unable to ignore this imperative. I don’t have any urge to ignore it. One book? What is left of us when there is nothing else? And I started writing. And I can’t stop.
On Wednesday night, I was moved to a different floor that didn’t involve acute care for post-op patients. Troy and Ashley came to hang out with me for a while. I was definitely more awake and alert. I talked about the books I was reading – Change Your Mind, Sex at Dawn, Bowen’s book about schizophrenia.
I asked how they were doing. Definitely a changed focus. Ashley was suffering from a headache. I felt like I could just walk out of the hospital. Troy was a little incredulous.
“You look entirely different than you looked last night.”
“I feel entirely different than I felt last night.”
“Were you here for any of the times I was trying to figure out the clock noise?”
“Oh weird. I was lying here staring at the clock. And I was trying to figure out where the sound was coming from and I turned to you and said, ‘What the fuck is that noise?'”
“Oh yeah. I was here for that. I couldn’t figure out what you were talking about, and then you said, ‘Oh it’s the clock.'”
“Did I do that more than once?”
“Not while I was here?”
“I know I remember having that conversation with you more than once.”
“You were not in good shape.”
“Yeah. I definitely was not in a good spot.”
I have been wondering since I got out of the hospital about these hallucinatory experiences. Perhaps the liver is connected to the brain somehow. Or maybe the liver shuts down briefly when experiencing trauma, backing up toxins that make the brain do crazy stuff. Or maybe I just have a lot of karmic baggage stacked in my psychological storage unit. I guess we all have to deal with our garbage eventually.
Troy and Ashley left, and I slept. It was not a satisfying sleep. It was an impatient sleep. I was/am ready to move on with my life.
In the morning, Dr. Tzeng, Dr. Zafar, and Wendy the Nurse Practitioner came to see me. Dr. Tzeng shook my hand.
“How are you feeling?”
“A thousand times better.”
“You look a lot better.”
“Bowels are moving.”
“Great. We’ll get you some solid food. If you tolerate that, then we’ll send you home.”
They left the room. I ate some food, and they sent me home.
Justine came to get me. We stopped at Lua Viet for some more solid food. I ordered it on the phone while she drove. She went inside to get it. More Shaking Tofu. As I waited in the car, there was nothing left. So much of my existence had been eaten up by this liver surgery. Cancer can really take every bit of your life. There isn’t really much you can do about it. What is left of us when there is nothing else?
Words. The clouds in the sky. A bitter wind on a magical mountain. A totem guide. A flood plain full of magic mushrooms. Therapy on the phone while walking through the woods at night. The kindness of friends and family. The rhythm of a city. A moment…
Justine got back in the car.
“So really after this surgery there is no cancer left in your body?”
“Well yeah. But I have to do seven more chemo treatments to kill the cancer cells we can’t see.”
“Yes but it’s all gone for now.”
“Yes it is.”
“So it only took you four months to beat stage 4 cancer Larry Fucking Lines. Six times six is thirty six sir.”
“You can’t make me laugh. That’s the only time it hurts.”
“Remember that time you had stage four cancer?”
What is left of us when there is nothing else?
How exactly does one prepare for major surgery? What is major surgery? I think liver surgery counts. I think it can at least be counted as a big deal. It’s a big deal to me. It’s tomorrow. I’m nervous.
On December 18th, I saw the liver surgeon, Dr. Tzeng.
“I have not been able to lose any weight, but I have been working out a lot.”
“That’s good. I need you to work out some more. Your CEA is down to 56. That’s really good. A normal CEA is between 5 and 30. You started at 581, so you are doing really well. Those are markers for tumor activity. Yours look really good at 56. The tumors are all but dead. The CT Scan confirms this. The tissues look dead just like the lymph node over by your colon. So we are doing really well.”
Dr. Tzeng brought up the CT Scan images on the computer in the exam room. I had seen three previous CT Scans. None were as clear as these.
“You see the edges here are really well defined. I want to just take these masses and what we call satellite nodules on the surface here. If we can confine it to resecting just these parts here, then it will only be about 10% of your liver. Then we’re going to take your gall bladder. But if we…”
“Wait. What? The gall bladder? This is the first time I’ve heard of taking the gall bladder.”
“Well it’s kind of standard. The gall bladder is right next to the liver. You don’t necessarily need it, and the risk is uh…”
“That since it’s so close, that it might have spread to the gall bladder?”
“Well we don’t see anything in the gall bladder, but it is connected and in the area. It’s just a standard thing that we do when resecting this part of the liver.”
“But these satellite nodules on the surface. They kind of worry me.”
“Why is that?”
“Well I can see them. They’re just on the surface, but we don’t know if there are additional nodules underneath the surface that aren’t showing up on the scan because of the interference from the main tumor.”
I nodded, but I still wasn’t getting it. He continued, “There could be additional nodules on the other side of the liver deeper inside the liver.”
“Oh,” now it was making sense.
“If there is evidence when I’m inside that there are additional nodules and I can’t be sure I’m getting all of the cancer, then I will just decide to take the whole left lobe of your liver. That’s about 30% of your liver. You can live with as little as 30% of your liver and the liver regenerates.”
“Okay. Yes I’d heard that.”
“So I won’t know until I get inside.”
“I get it. It’s like looking through a dirty glass in these images, but you’ll know when you get inside.”
“Well I can get a pretty good idea, but I really won’t know.”
“The map is not the territory.”
Dr. Tzeng looked at me intently, “Now I need you to prepare for this like you are a champion athlete. Like you have been training your whole life for this event.”
“I have been working out a lot. I haven’t lost any weight, because I keep eating enough to keep up with my caloric burn.”
“You need to work out more.”
“I’m already doing two hours a day.”
“What? Double that?”
“If you can do two, you can do four. Every minute you put in now will pay off on the other side.”
I don’t know what it is about the way that Dr. Tzeng talks to me. I get the objective. Be in really great shape to recover well. Eat well to get the inflammation out of your body. Get the fat out of the liver. It will be easier to work on. Low inflammation, no fat in the liver, dead tumors equals clean surgery. But the way that he says it is perfect for me. I wanted to start doing push-ups or jog out the door.
“I can do that.”
“Let me see your abdomen again. I want to see the incisions from the hemicolectomy.”
I lifted my shirt.
“Ah. They did a laparoscopic procedure. I’m probably going to cut about six inches right here.”
He traced a finger vertically just below my ribs on the right side of my abdomen.
“I get it. You have to be able to see what you are doing.”
“And when we resect the liver, the biggest risk of infection is bile escaping into the abdominal cavity. So we hook up a machine and blow air into the liver. Bubbles come out where the bile could escape. Then we can see where to put the sutures.”
The reality of this procedure was coming together. This was going to be a big deal. Dr. Tzeng had confidence, and he had my confidence.
“Do you understand?”
“I think I do.”
“Work out more.”
“I will,” and I did.
Years ago, I worked at a company called Production Access. It was my first full time programming job. I was laid off in 2003, but I went back to work for them in 2006. I had a lot more experience. I had a high degree of confidence in a great many things that our software did. I knew what I was doing.
Still, I had my moments of anxiety. We were working on a project for a company in Alabama called Black Warrior Methane. We had to travel to the field office. There was a great deal of preparation just to tell the company what we were going to do. It was up to me to present our proposal to the company leadership.
I worked with a few people on that trip into the evening; Scott, Parag, Mario. I was terrible at being a person. I used a lot of vulgarity all the time (I still do, but I have filters depending on the company). I couldn’t help myself. I still felt like an impostor. I felt young and unqualified – even at the age of 36.
After we were done with the prep, Mario asked if I felt like I had all of the information for the presentation. I said, “I think so.”
Mario said, “You think so? I don’t like the sound of that at all.”
Mario had a big voice. I loved listening to him. He had that Louisiana accent that almost sounded like Brooklyn.
“I think so.”
“What else do you need?”
“I don’t think I need anything else. I’m just a little nervous.”
Parag said, “Nervous?”
Mario said, “Yeah that doesn’t sound like the Larry I know. Nervous? Come on.”
“Really? What do you mean?”
Parag said, “Yeah. Come on. You’re Larry Fucking Lines. You tell them what we’re going to do.”
The room erupted in laughter, including me.
“What? Do I come off like that?”
“Yes you come off like that,” Mario said. “You make me nervous when you say stuff like this. You always say it like you know exactly what we’re going to do.”
I laughed again, “I didn’t know I sounded like that.”
Parag said it again, “Yeah you sound like, I’m Larry Fucking Lines. Get in line people. We got work to do.”
I have referenced this conversation often since then. I told Justine, my now ex-wife. She said, “Goddamn right. It’s maddening. She did a comical imitation of me, I’m Larry Fucking Lines. Let me tell you how it’s going to be. Yeah that’s a good way of describing it. You have no idea how awful that can be. You also say things in a way that just make people jump up, like yeah Larry Fucking Lines said we’re going to take that hill.”
Justine and I had a running joke that came from a reality show on the Discover channel or something like that. It was Marine SEAL training. Justine used to love it. I only watched a few episodes. One of those episodes had all of the SEAL candidates swimming in frigid water in pairs as the drill instructors yelled at them to keep going. Everyone looked terrible. There was one guy that looked like he was going to pass out. He was turning blue. The guy with him looked fine. Nothing wrong with him. The instructors pulled both men out of the water. They wrapped them in blankets and took their temperatures.
Then the instructors started asking both of them questions, “How do you feel marine?”
The guy that was turning blue could barely get it out, “I feel bad.”
The other guy said, “I’m fine.”
“Fine? Do you want to get back in the water?”
“Yes sir,” he stood up.
“No sit down. Sit down.”
The instructor turned back to the blue guy, “What’s six times six?”
“Six… times… “
“Six time six marine.”
“All right. Don’t hurt yourself.”
The instructor turned to the other guy and said, “Six times six marine.”
He perked right up and said really loud, “Six time six is thirty-six sir!”
Justine and I laughed and laughed.
The drill instructor turned to the camera and said very quietly, “He’s got hypothermia.”
The cameraman pointed at the blue guy, “He’s got hypothermia?”
The instructor shook his head and said, “No he’s fine.” He pointed at the other guy that was completely coherent. “He’s got hypothermia.”
Justine and I laughed at that for years. After the Larry Fucking Lines episode, it became her way of telling me I was being imperious.
“So we are going to tear down this wall on this side and put a door over here.”
“Six times six is thirty-six sir!”
Larry Fucking Lines.
I keep thinking of airplane pilots. I have been afraid of flying at times. I’m not sure if it’s fear really as much as a trigger for anxiety. I haven’t let anxiety rule my life. I just get on the plane when it’s time to go.
I tell myself that the flight has nothing to do with me. The pilot is flying the plane. I am not qualified to help in any way. He/she is going to fly the plane, and it’s going to go where it goes. I have nothing to do with that operation. Crash, successful arrival. I am just along for the ride.
The surgeon is in charge. This operation requires nothing of me now that I are here. In fact, I will be asleep. All of my anxiety is for before and after.
I took Dr. Tzeng’s directions quite literally. Since December 18th, I have worked out for four hours a day. I am trusting him to do his part. I am in complete control of what he asked me to do.
A typical day was two hours or walking (six miles), one hour of tennis, and one hour of martial arts, calisthenics, and stairs. I do a workout on my arms with steel rings that I have from my kung fu days in Albuquerque. I haven’t done the full ring workout in ten years. I have done that workout every day since the 18th. On some days, I can hardly walk. The foot that I dislocated six years ago hurts a lot. My lower legs and knees start out stiff every morning. I may not be losing weight, but I changed shape. I’m looking forward to the surgery, so I can get some rest and recover from these workouts.
I switched to a vegan diet about nine days ago. The inflammation just poured out of my body. I feel like I have been deflated. My fingers look like I have been in the bathtub for too long.
This morning I felt a little maudlin. I wanted something familiar to listen to, but I ended up picking another song from another difficult part of my life. A song from a band called Little Hands of Asphalt. The song is Oslo. I wrote about it in 2008 when Justine was in the hospital with Lucy in her stomach for seventeen days.
There is so much that has changed since I wrote all of those entries eleven years ago. Divorce. Illness. Moved to Oklahoma and back. So much of who I was then is still the same. So much is different.
Often, when I am at MD Anderson talking to the oncology team, I feel their affectionate impatience with my anxious questions about feeling sick, skin problems, nausea, Avastin, blood pressure, nose bleeds. They can’t say what that impatience is about, but I have guessed often.
When I am in the infusion department with the chemicals being pumped into my chest, I am the only one upright. I don’t wish to read too much into this because I have some residual superstition about hubris. I don’t want to speculate about how strong I am. (Let’s all knock on wood.) But this is my interpretation of that look from my oncology team.
“Have you seen what happens to people on chemotherapy Mr. Lines? Have you seen how far people are set back by their treatments? Do you understand that you walk into our office, and it’s hard to believe that you are a patient?”
Yes I do. I understand that. But somehow, even with all of my strength, my great attitude, my willingness to confront most problems immediately, somehow I still got cancer. No one is more surprised that I am the patient than me. Do I believe that I will get better? Sometimes. Belief has to come with some convincing. Right now the only thing I’m convinced of is that I have cancer.
It’s still a long road to remission. That road leads through liver surgery. I have prepared my body. I hope that I present a body to the surgical team that is strong, unnecessary inflammation free, and a fat free liver with dead tumors that are easily resected.
I didn’t need that gall bladder. It didn’t seem to like me very much anyway. It always attacked me when I was least expecting it. But we have been together for nearly fifty years. I don’t believe that I will miss it, but we will see.
Those looks from the oncology team say that I will be fine. I believe them. I really do. As surely as I believed that Lucy was going to make it. Just as it was when I wrote that blog entry back in 2008, the backdrop to this scene is a world in chaos. People are angry beyond description. My crisis is small compared to what is happening in the world. My loves have changed, but it is still my world. It means everything to me. I’m going to have to plug back in later to see what happened.
“You have always done what’s right for your children all the way back to when Iggy was in Justine’s stomach. You will continue.”
I misunderstood this when I first heard Emily say it. I thought it was a gentle nudge to keep doing the right thing by my children. I felt defensive. Of course I would always do the right thing for them. But it was an acknowledgement. I have always done the right thing.
“You will continue.”
There was a note of confidence in there, “I know who you are Larry Lines.”
The right thing for my children right now is for me to do anything and everything in my power to stay alive. To find whatever it is that makes me Larry Fucking Lines and use it for me. To be selfish in ways I have not allowed myself in a long time. This use of my energy cannot be limited to my recovery. They have to see me live again – even more than I have before I was ill. To feel like I deserve to be alive and take from life what I can.
A few days ago, Rebecca read me a poem that she wrote about a road kill coyote she saw on her way to Fort Worth to see her daughter over the holidays. She felt a surge of empathy for the fate of the coyote and got choked up.
“I couldn’t pull over to the side of the road in the middle of Austin to weep over a dead coyote. I started writing a poem. Of course I couldn’t pull over to write the poem either, so I just started saying the lines out loud and memorized them.”
There are a lot of things happening. Sometimes I feel like that road kill coyote – just a casualty of modern life on the side of the highway. What is my plight versus the billions of other stories? Does my story matter? This is just another case of cancer. Just another liver surgery.
I am nervous. I am superstitious about about being overly confident. Like a batter in the World Series re-strapping his gloves before each pitch. He knows damn well that those glove straps are secure. Re-strapping those gloves isn’t going to help him hit the next pitch. I hang onto my nervous energy like that. Re-strapping it. Making sure I don’t forget that I’m nervous. I will do anything for my kids. For those I love. For myself. Then I step back up to the plate like I’m Larry Fucking Lines.
Chloe: Well, I’m still here, but I don’t know for how long. That’s as much certainty as anyone can give me. But I’ve got some good news: I no longer have any fear of death. But I am in a pretty lonely place. No one will have sex with me. I’m so close to the end, and all I want is to get laid for the last time. I have pornographic movies in my apartment, and lubricants and amyl nitrate …Fight Club
A pervasive condition that accompanies chronic illness is feeling left behind. The first time I noticed this feeling was when I was in the hospital in August. Eleven days is a long time. Each day was a lesson in acceptance. Each day seemed to illuminate more of what was in front of me in the months to come. With that illumination was the unavoidable list of things that I would be missing.
First, there is the list of things I would be doing that had not previously been on my agenda; chemotherapy, liver surgery, doctor visits, bloodwork, CT Scans, side effects. Entire days just waiting around to feel better. Sitting in waiting rooms for hours. Needles, needles, and more needles…
Then, there is the list of things I would be missing; days spent with children, days spent with people, dating, creative endeavors. Depending on the day I could be missing almost anything.
I talk to my friend Aaron almost every day. Together we have produced music, film, video, and other media. More importantly, he has been a great friend to me for a long time.
Aaron has Cystic Fibrosis (CF). I don’t remember when he was diagnosed, but it was very young, maybe six. CF was still a mystery at that time. The research progressed along with his life. In 1962, the average life expectancy for a child with CF was ten years old. By the time Aaron was born in 1975, life expectancy was around 16 to 18 years old. That number has been increasing by a few years for his entire life.
Imagine if you were told that you had about another five years to live for your entire life. I think that’s oversimplifying how Aaron’s life has progressed, but I am not too far off base there. Even now the average life expectancy is 37. As Aaron approached 40 years old, his lung function diminished to such an extent that they put him on the transplant list. He was not on that list very long when lungs appeared that were a perfect fit.
I looked up life expectancy for lung transplant recipients. I also recalled the personal experience of the father of our mutual friend Tamara that had a lung transplant around 1999. I was preparing for the worst. My knowledge of lung transplants was that they were experimental at best.
I think it has been six years since Aaron’s lung transplant. Who knows what the number is on the additional years he could live. I don’t think it is relevant. He doesn’t think it is relevant. He told me that he doesn’t want to know the numbers. I think he is 44 now.
How would you live your life if you had another five years to live? It’s a dumb question, but it’s also something I have considered often in the months since my colon cancer diagnosis. I don’t have anyone telling me the numbers, but mortality is always on my mind. It’s impossible not to think about mortality when I am planning for my death.
An Advance Directive is a document that allows you to make known your wishes for end of life care if you happen to be in a state where you can’t make a decision. If I fall into a coma for an extended period of time, what do I want to happen? Under what conditions would I want life support to be terminated? I can designate a person to be in charge of that decision if it comes to that. This is important because I am divorced. I also have children that aren’t of legal age. On whose shoulders do I put that burden?
I don’t own much in the way of assets unless you consider debt to be an asset. At least I had some sense to get life insurance that isn’t attached to a job when I could still pass the medical exam. I also enrolled in the life insurance benefit at my new job at the maximum amount I could purchase without getting a medical exam. That benefit starts tomorrow, January 1st. Less than a week before my liver surgery. Once again, I am divorced and have children. I have to plan what happens with that if I happen to die.
It’s unlikely that I will die, but death is a possibility. ‘Unlikely’ is not zero. It makes people uncomfortable to hear it, but it is my reality.
Another perspective is that I could get hit by an asteroid tomorrow, so I should have done this a long time ago. Many people do make these kinds of arrangements long before it is necessary. In my busy life moving from one perceived crisis to another, death has been far from my mind. I wish that I would have made these arrangements previously, but it is uncomfortable thinking about death at any time. Unfortunately, it is even more uncomfortable to think about when I am in a fight for my life.
I have been completely oblivious to Aaron’s reality even when he was explaining that reality directly to my face. Even when he was coughing constantly. Even with his giant pill jars full of enzymes, his travel nebulizer, and his challenging workout regimen that he stuck to like his life depended on it, which it did.
Back in August, Aaron happened to be in the hospital in New Mexico at the same time I was in St. Joseph’s in Houston. We spoke through Google Messenger. He was having pulmonary function tests that came back lower than expected. They kept him for days. He listed his hospital workouts; stairs, chi kung, walking. He kept me motivated.
One day, while struggling with post-op pain and all my visitors gone, I sent him a message, “I feel like everyone is moving on with their lives without me.”
“Well the simple answer is that they ARE moving on with their lives without you.”
“Thanks for the confirmation.”
“They have to move on with their lives. But it’s also what you are doing. Moving on with your life without them.”
“Don’t dwell on it. You focus on your health and jump back on their radar when you can.”
It’s good advice, and like all good advice, it’s just so hard to follow.
The truth is that the feeling is bull shit. It’s just a lie I tell myself. People were moving on with their lives without me before I had cancer. Everyone moves on with their lives on a daily basis. I don’t recall very many people checking in with me before I had cancer. Why would they do it now? Even my kids seem to grow without my permission.
In the face of what I can’t do right now, I can’t help but feel left out. My biggest accomplishments in the last four months have to do with mortality. What a way to trivialize that effort: to think about all of the ways that other people’s lives seem to be better than mine. Given the time, did I do anything better with my life. Maybe not, but the time was mine to trivialize. And even all of this description doesn’t come close to what it feels like when I am consumed by these thoughts.
I haven’t hiked in years, but I was trying to find a way to work it back into my life. I can’t really do any of the deeper hiking that I like to do. Not while my health is compromised.
I don’t know what I want from a relationship but I definitely like the company of women. Nothing seems like a good option in that arena. Whenever the subject comes up, I think about what a lousy prospect I am for a relationship or even just sex. I’m toxic for about a week after the chemotherapy. Maybe there are women out there that are into that kind of thing. This has been a fairly interesting subject for me. Would I be interested in dating someone that was in the middle of cancer treatment? I don’t think I’ve ever had to deal with the subject. It seems okay to me now, but what would I have thought six months ago.
These limitations often lead to thinking of some encounters as a ‘last time’. Through the holidays, will this be the last time I see this person? Nowhere was this more evident than seeing Emily. She drove back to West Texas. With surgery on January 6th, will that be the last time I see her? Troy’s son, Ryan, going back to New Mexico. Will this be the last time I see him? Family gathering for Christmas Eve? Many of my friends and family (nieces, nephews, cousins, aunts, uncles) I only see a few times a year. All of the people I visited this summer after thirty years. Will that be the last time I see them? I don’t have those answers, but the truth is that none of us do.
I will be fifty years old on January 15th. I’ve lived quite a life already. In one of the many conversations I’ve had with my son, I said, “I’m not sure what’s going to happen. My chances are pretty good. But still. There are a lot of things I want to do with my life.”
Having heard quite a bit about my life from friends, family, and myself, Iggy said, “You’ve lived quite a full life already. You’ve done a lot of things other people only dream of doing.”
I laughed, “Good point. I guess I have.”
“Don’t get me wrong. I’m not ready for you to go either.”
Sitting in the MD Anderson Emergency Room with my new friends, Arianna and her mother, “The doctor asked if she was in school. I said, yes, she’s a senior in high school. He said, not anymore she isn’t.”
“Yeah we have to travel back and forth to Pensacola. This is the closest facility equipped to handle her form of cancer.”
“We might be able to do it closer to home.”
“Yes. The oncologist here said that they might have someone that can do the treatments closer to home which would be great.”
“I still won’t be able to go to school.”
Arianna didn’t seem to want to explore this subject. I don’t blame her. Everything I’ve said above pales in comparison. I have ignored my own mortality. I am sick. I can see people moving on with their lives. There are many aspects of life of which I cannot currently participate. I’m fairly certain that I’m going to be all right. I can just jump back on when the time comes. But that 17 year old girl isn’t going to get her last year of high school back.
A detail (among many) that has been lost in the telling of this story is my voice. When I had surgery in August, one of the many symptoms I had afterward was an irritated vocal cord. I only noticed the irritation when I raised my voice and while singing. I did little of either of those things while still in the hospital.
I didn’t realize how much singing I actually do. In the car. In the shower. I write songs and sing them. I hum along with melodies. No longer. I couldn’t sing at all. My voice isn’t that great. The world isn’t missing much, but this has been a source of worry.
I thought it would just heal on its own. It did not. After a few months, I told the gastrointestinal oncology staff about it at MD Anderson. They immediately, and without question, made an appointment for me with the head and neck department.
In November, I had my first appointment. The intern saw me first. He asked some questions, numbed my throat, and shoved a tiny tube with a camera into my nose and down my throat. We discussed the sensations around singing and higher pitches and raising my voice and when it started.
“It started right after I had the hemicolectomy at St. Joseph’s in August.”
“I see something there, but we’ll have to see what Dr. Lewis says.”
Dr. Lewis strode in, introduced herself, and shoved the camera back into my nose.
“Your right nostril is irritated.”
I struggled to talk around the sensation of the tube going through my nose, “One of the chemicals in my chemotherapy regimen is Avastin.”
“Yes I know Avastin.”
“Well my nose has been bleeding for the last two months. They are going to stop the Avastin in the next chemo run. I think the Avastin is the reason my vocal cord isn’t healing. It kills the body’s ability to build new blood vessels. They want it to happen to the tumor, but it happens everywhere in your body. So you have a hard time healing.”
“You know a lot about this.”
“It also raises your blood pressure. It freaks me out a little.”
Dr. Lewis gestured to the intern,”Did you make a note about the Avastin?”
The intern looked sheepish, “No I didn’t think to ask about what drugs are being administered in chemo.”
Dr. Lewis smiled disapprovingly, “It is a cancer hospital. Which is why we’re looking at the lesion to begin with.”
It hadn’t occurred to me that this could be cancer on my vocal cord until that moment. I just thought it was an abrasion caused during intubation during the colon surgery. My preoccupation with Avastin had me blaming the chemotherapy for it not healing.
I said as much to Dr. Lewis while she continued with her examination. She continued in silence for some time. Suddenly, she was done and pulled the camera out of my nose.
“I don’t think it’s cancer. In fact, I’m pretty sure it’s not cancer. But I want a closer look at it. Schedule a laryngoscopy. Are you a smoker?”
“I already have a laryngoscopy on my schedule for December second. Yes I smoked for a few years. Probably a total of eight years. I even started again this year like an idiot, but I quit after a few months.”
I always feel like an idiot during the smoking questions. Under the lights at a cancer hospital among clinicians devoted to solving one of life’s great mysteries, for a moment, my problem doesn’t seem very mysterious.
There is always a look exchanged. Then a diffusion of tension, “Well I don’t think it’s cancer. In fact, it looks like a granuloma which makes me think of acid reflux.”
“Is there damage that you can see?”
“No but it doesn’t mean the reflux isn’t there. If that’s the case, then we sometimes remove the granuloma, but then if the reflux is present, it just keeps coming back. Take some Prevacid and we’ll take a closer look in the laryngoscopy.”
“You mean over the counter Prevacid?”
The December 2nd appointment was replaced by an additional chemotherapy infusion as the liver surgeon thought it would be best to schedule the liver resection for January. This left room in my treatment plan to squeeze in an additional chemotherapy infusion.
This rearrangement of appointments is happening constantly at MD Anderson as priorities and realities change. They use the MyChart phone apps. Some days, I feel like I am in the oncology staff meetings.
“We can’t do the liver surgery until January 6th. Give him another round of chemotherapy on the 29th of November.”
“Do we need the Avastin anymore? He has to be able to heal, and all indications suggest the tumors are dead.”
“Remove the Avastin. Schedule the surgery on January 6th. Final CT Scan, bloodwork on December 17th. Follow up with Dr Zheng on December 18th. PA visit for anesthesia also on December 18th. Get it all in before the holidays.”
My phone starts vibrating in the middle of a meeting at BHP. For the next five minutes, I see a picture of November, December, and January emerge as the alerts come in for new appointments. I turn the vibration noise off.
“Wait. He’s got a day job. He’s still working. Schedule the bloodwork and CT Scan for after five o’clock.”
The alerts pop up on my phone but don’t disturb my meeting.
“Oh yeah. Cancel the laryngoscopy.”
Late December, right before Christmas, it occurred to me that I might need a flu shot. I rushed myself and the kids to their pediatrician’s office where we all got flu shots. Three weeks out from my previous dose of Avastin, my vocal cords felt pretty good. I sang on the way to the appointment and on the way home.
The following day, I got cold symptoms and lost my voice. I thought perhaps I had been a little too optimistic about my voice and caused this. The cold symptoms persisted through Christmas. Christmas morning I coughed into my hand a thick gray mucous that was so striking and disgusting that I took a picture of it. On December 26th, I woke no better and no worse off than I had been since the onset of the illness except that I was depressed.
Medical professionals, family, and friends have described my attitude toward my cancer as very positive and optimistic. I know what they are talking about. I am proud that others can see this. I try to remain humble in the face of this pride. It’s impossible. I work my ass off at maintaining this optimism. If I die from cancer in the coming years, it will not be due to the fact that I had a bad attitude or gave up.
Cancer fucking sucks. That is a reality. Cancer treatment is traumatic. It’s traumatic, and I don’t even feel like my treatment is that bad. For now, I don’t have to do any radiation treatments which sound horrifically painful. My prognosis sounds pretty awesome. I have plenty to be optimistic about. I might be able to be cancer free.
But it’s a tightrope. It is so easy to fall off into one side or the other. On one side is unfounded optimism. On the other side is despair. You can’t fall to either side.
Often people will say to me, “You’re going to be fine. I just know it. You have such a great attitude.”
Friends, family, people I’ve just met. The fact is that attitude is only one factor. I could let this get to me. I could think that all that is necessary is that I have a great attitude. In the end, it’s the doctors, science, money, my support system that will cure me. My great attitude will only get me so far.
On the other side is despair. Why hope when there is so much to lose? What if I die anyway? Won’t that be crushing? How can I offer hope to those I love when the reality could be that all of this is for nothing?
There are many more pathways, for me, leading to despair than there are to irrational optimism. One of these pathways to despair, one is loneliness. Having just divorced in 2018, I arrive at loneliness at the end of every day. If I am honest, having the wrong partner would be much worse than being alone, but sometimes I don’t care. For instance, I see my friends Tamara and Randy, both cancer survivors, able to turn to each other at the end of a day. Granted, I don’t know what that day looks like or what the reality of their companionship looks like, but even on a bad relationship day, it’s your person. Having a person…
I had this discussion with my friend Emily around this time. Emily that I talk to more often than this book suggests by a large margin:
“Larry what do you want?”
“I don’t know. A partner that I spend time with. No. I don’t want to spend all that much time with them. I… Maybe I want… This is a very difficult question. What do I want? I want someone to turn to at the end of the day. Maybe not every day. No that isn’t it either. It’s that I want that person, but I don’t want it to be the wrong person. And I want that person to want to be there. But that isn’t really it either, because now the question is bigger. What do I want? I don’t know. I want to write a book. I want to write and compose music, maybe not perform music but compose it. Make movies. I want good people. I want a person to turn to at the end of the day. At least I’m writing the book. That’s something I have control over.”
“I support that. That’s fantastic.”
“I don’t know. That’s a hard question.”
There was some silence.
“What do you want, Emily?”
“Oh. Um. I’m not sure. I want time and to travel. I need that right now. It’s been an unrelenting year. I need some time to myself.”
“Okay. I support that.”
“What I want for you Larry is to feel fully supported and loved by your community without exception. Even at the end of the day.” Her words rushed after this. “Why was it so easy for me to come up with that for you, but I couldn’t think of that for myself? It is so easy for me to see what I want for you, but so terribly hard to see what I want for myself. It is a terribly difficult question. What do I want? Thank you for asking Larry. It means a lot to me.”
“That’s what I want for you – to feel fully supported and loved by your community. Even at the end of the day. Without exception. I really like that.”
“How long the wait?”
“Do you think they will eat us?”
“I’m sure. I think I’m sure.”
To feel fully supported and loved by your community without exception. Even at the end of the day. That is the tightrope. You can’t hope for anything more than that, and you can’t survive with anything less.
On the morning of December 26th; sore throat, no voice, stuffy nose, another Christmas in the bag, and no one at my side, I found myself in despair at my lack of companionship.
I needed to go see a doctor. My options were to go see a doctor at the MedSpring close to my house for some quick antibiotics or to spend all day at the MD Anderson Emergency Room. If I went to the MedSpring, I risked reporting this visit and the antibiotics on the morning of my surgery and causing delays, maybe even a postponement, of my surgery. If I went to the MD Anderson Emergency Room, that would be my entire day.
I would usually reach out to someone to take me. Even Justine had offered to take me on Christmas day as the kids were opening their presents. In my despair, I could only think of the flaws in my community. Replaying conversations in my head that emphasized my isolation. Emily chastising me for not having someone take me to the previous week’s CT Scan. Justine’s life without me seemed ominous. The pairings and commitments and out of town visitors and visits and holiday commitments of Troy and Ashley and Rebecca and John and Kelli and on and on and on…
Emily wasn’t chastising me. She was concerned that I would reject the full support of my community. Anyone on my list would drop whatever they were doing to go with me. I didn’t want to tell anyone. I just wanted to go sit in isolation at MD Anderson by myself.
I forced myself to call my mother. First item on the agenda. Where should I go?
“It isn’t about the doctors and the delays at MD Anderson. You will not be satisfied with the answers you get at the MedSpring. Besides, if you say have cancer and you are being treated, they are likely not to do anything anyway and send you to an ER.”
“I know. I keep thinking about telling Barbara that I went to a MedSpring to get antibiotics and her asking me if they did the bloodwork to check my WBC, and then I think,’Shit. I’m going to want to see the bloodwork just because I know why she wants to see it.'”
“Okay. So you have to spend your day at the MD Anderson ER. I can come down and spend the day with you.”
My mother had knee replacement surgery three weeks previous to this conversation. She was still hobbling around. She would have dropped everything to come to MD Anderson and sit with me. I launched into my community despair.
“I have all of these problems with everyone and let me tell you…”
I did not list my litany of reasons for hating everyone. Instead I listed all of the reasons it was okay for me to go alone. The reasons that my fully supportive community shouldn’t be bothered on this particular day. It was a compassionate discussion. I really just didn’t want to be with anyone on this particular day. I was just going to bring my computer and write.
“Maybe you should just move to Marfa.”
“You just don’t have anything to look forward to.”
“You know you’re right. It’s been a long three, now four years, of nothing working. I keep thinking I’ll turn a corner and everything will be okay.”
“Just something different. Start fresh somewhere. Just go to Marfa.”
“A year ago, or even a few months ago, I would have completely rejected this. But now my motivation for everything has changed. I could totally live somewhere like that. That sounds so awesome.”
“But I can’t do it now. I have cancer.”
“No but you can go afterward.”
“What if there is no afterward?”
“Just think of it like there is going to be an afterward. After this is all over, you can just move to Marfa. Everyone and everything is going to be all right. They’re all going to be fine. Why not? The world is better for everyone with you in it. Just take a deep breath like you used to do when you would scare the shit out of us all when you were twenty and start all over again.”
“They’re all going to be fine.”
“Justine is taking the kids to Austin December 30th to January 1st. I am at loss as to what I’m going to do with myself. Emily is going camping somewhere. I almost feel like I could end up in the same park camping by myself. I really need that. I keep trying to substitute that need, but it never works out.”
“Something to look forward to.”
“Melissa texted me to invite to the January 1st Wecht shindig in New Jersey. I said I am almost tempted. She told me to find a cheap flight. I said I was already looking. Maybe I’ll do it.”
“Everyone is going to be fine. People get on flights for stuff like that all the time.”
I got off the phone feeling a little less alone. I didn’t want to tell everyone what was up, but I did it anyway. The kids were going to be home alone. I texted Elysa because she lives in the same building. I texted Troy to have him on call. I texted Emily because she’s in town visiting her mother. I texted Justine because she is the children’s mother and now my friend. I fully expected to be fending off offers to go with me, but everyone could feel that I didn’t need it. And they did have obligations of their own, that I fully supported them in fulfilling.
I told the kids I was leaving. I ate something because I knew I was going to be gone all day. Then I left.
The drive was one of those blanks. I found myself walking into MD Anderson from parking lot 10. I slowed down for a woman pushing a wheelchair with a young girl in a hospital mask. I held the elevator doors for them, politely avoided conversation and small talk, and went around them briskly when I had the opportunity.
I approached the nice Indian security guard at elevator A and asked him for directions to the emergency room since I had never been there. He didn’t understand me. I felt impatient with him, but eventually he understood and gave me directions. From over my shoulder, I heard, “The emergency room?”
It was the woman pushing the wheelchair. I had her follow me. I held more doors. We wandered the maze of corridors following the red ‘Emergency’ signs and eventually found ourselves checking in together. She thanked me and walked away. The only seats in the waiting room were right next to this woman and her daughter, whose name I later learned was Arianna.
“We have never been to the Emergency Room here,” the woman said. She had a shirt with a logo from a surf shop in Pensacola, Florida.
“This is my first time as well.”
“We were going to the Target today to get some stuff. Just before we got in the car, I looked over and saw her sagging. I asked her if she was okay and she said she didn’t feel right, so here we are.”
“Oh you aren’t feeling well?” Arianna shook her head. “I’m so sorry. I understand.”
“This is only her first treatment. Do you live here?”
“Yes I live very close. Only a couple miles. You?”
“No we’re from Pensacola.”
“Oh no. I was hoping that your shirt was just a souvenir. You’re staying in a hotel?” They nodded. “I can’t imagine. Away from your creature comforts doing chemo for the first time.”
Arianna lit up, “Yes I was just saying that this morning. Remember Mom?”
The staff came to get each of us for triage. But then we were right back in those seats.
“I already feel antsy,” the mother said.
“I imagine that’s true. But we’re going to be here all day. This day is over.”
“It wouldn’t be so bad, but we are right back here at 7:30 AM tomorrow morning for round 2.”
“I know it’s got to be different for you. The friends and family that I take with me when I get treatments, I can feel them. They want to be here, but they want to get out. Time moves differently for the patient I think. This is our life. There is nothing beyond this.”
Arianna said, “Yes!”
For the next three hours, I talked to them about all kinds of things.
“Water is terrible for me now.”
“I was just telling her that. Water tastes terrible.”
“Something about the chemo makes you taste all of the chemicals in the water.”
“Yes it tasted like pool water now,” Arianna held up a Smart Water bottle. “Everyone keeps telling me to pound the water.”
“But it gets so much harder after you start the chemo. They told me that and I thought, yeah I can do that. I drink water all the time.”
“Yes. But it’s really hard. It’s not just that. Everything tastes different.”
“Yeah. When I first started, I could only eat grapes. They tasted perfect.”
“I’ve been eating grapes. It’s about the only thing I can eat besides…”
“Yes. Wow. It’s not just me. And then the grapes dry my mouth out.”
“I suck on them for a long time so they don’t leave my mouth dry.”
Arianna was brave.
“I knew when I saw the CT Scan. Everyone kept saying all of these things that it could be.”
“Yes. I knew when I saw my CT Scan as well. It’s so unlikely that I have two benign lesions on two different organs. I think we have to sit with a different reality than the family or friends.”
“I felt like I had to accept it right away.”
“Sometimes I feel like everyone just wants to know when it will be over. Like they want a date in the future when either I will be cured or I’ll be dead.”
“Yes. I’ve noticed that. I don’t want to be rude. I know they are just asking out of concern in the only way they know how.”
“It’s a different reality on this side. I have friends that have had chronic illnesses and cancer on and off for their whole lives. I can totally hear how tone deaf I’ve been.”
“Yes it’s very strange. And people always saying what a great attitude I have. And I’ve only been at this a month.”
“The reality is you can’t be too optimistic either.”
“Yes you have to be realistic.”
“Or the setbacks will be devastating.”
“It’s a tight rope…”
There were older people in much worse shape than us that turned to listen to our conversation. Engaged in something other than their pain. I felt purpose. We weren’t saving anyone’s lives. We were just connecting and feeling comfortable enough to share that connection with anyone that could hear.
A woman about my age sat near us with her son and jumped in quickly. She introduced herself. I think her name was Lesley. She had Stage 4 kidney cancer which had all been eradicated by surgeries and chemotherapy. She had some spots that they were monitoring in her lungs.
We had the same conversation about things that you only know after you have cancer. I told them about my blog because they were reading books by cancer survivors.
After a while Lesley said, “You’re going to fine. I know it. I can hear it in your voice. You too Arianna.”
The nurses finally came to get Arianna and we parted ways wishing each other the best. I followed shortly after.
I was right to go to the MD Anderson Emergency Room. They ordered everything. Bloodwork, chest x rays… I told the doctor about my picture and he wanted to see it. He said that they really needed me to come document all of this at MD Anderson when the surgery was so close or the morning of the surgery would be chaos. He prescribed an antibiotic, an antihistamine, and a throat lozenge. I went home.
Troy called me on the way to check on me. As every conversation since the first day I stepped foot in the hospital, Troy ended with, “Hey whatever you need man. Just let me know.”
On the way home, Justine tried to call me. She was at a Vietnamese restaurant getting food after her shift and wanted to know if I wanted some Pho because she was on the way over to spend the night with Lucy. I was already standing in Lua Viet ordering Shaking Tofu for myself. I texted her that I was already getting food for myself. A text she never saw.
Shortly after I arrived home and was sitting on the couch eating my Shaking Tofu, Justine arrived and said, “I bought you some chicken pho.”
I said, “Oh wow. I texted you that I was already getting food.”
“Where did you go?”
“What did you order?”
“No way. I ordered the same thing for myself. I got you chicken pho you can eat tomorrow.”
This is a restaurant we discovered separately after the divorce and have only been to once together.
Later, Justine and Lucy went to bed, and I felt completely alone. I felt as bad as I had felt at 8 o’clock that morning. Nothing to turn to. No one cares about me. All of the usual hallmarks of despair.
I was very tired, so I prepared for bed. Sometimes when I feel that despair, I hate the idea of being in bed. As I’ve said, I don’t sleep well, but at some point we all end up with ourselves. And that’s where I was. I was still exchanging texts with a few people. Knowing Emily had a busy day, I fired off a text anyway.
“Yeah that’s kind of what I meant. …”
“Did you get antibiotics?”
“There is no comfort at the end of this day. Yes I did. So it was a successful day. I feel proud of my self.”
“That seems a comfort (to me).”
“Ya know this ^ is a comfort (to me). I wish I could tap this ‘thank you’ in the tiniest letters.”
And then I closed with, “Separately, I talked to a 17 year old girl (with a rare carcinoma) and her mother (both having to live in a hotel from Pensacola) for three hours and made them smile and laugh.”
To feel fully supported and loved by your community without exception. Even at the end of the day. That is the tightrope. You can’t hope for anything more than that, and you can’t survive with anything less.
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?”
“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.”
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?”
“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?”
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.”
“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?”
“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.”
“We turn the small intestine.”
“You turn the small intestine?”
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.”
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.”
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.”
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?”
“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.”
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,” 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.
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.”
I have a paradoxical reaction to opioids. From wikipedia: A paradoxical reaction or paradoxical effect is an effect of a chemical substance, mostly a medical drug, opposite to the effect which would normally be expected. An example of a paradoxical reaction is pain caused by a pain relief medication.
Opioids don’t cause me pain as described in the example. They wake me up like speed. I sweat and shake a lot. I become very anxious. This also happens with all benzodiazepines like Valium
I don’t have much experience with opioids or benzodiazepines, because I’ve never enjoyed them. I even avoid them. Doctors always seem to be trying to give me one or the other. There’s no use trying to tell a doctor or a nurse that you have a paradoxical reaction to these drugs. They aren’t listening. Or maybe that’s another part of that thing I do where I don’t show any emotion. People are just going to miss it.
“I have anxiety.”
“Okay let me give you a prescription for Xanax.”
“I have a paradoxical reaction to benzodiazepines.”
“Okay cool. Hey it was good to see you. Let’s try to get that weight off and the cholesterol down. Here’s the script for the Xanax.”
This has happened many times. Also, why do doctors want to give me Xanax for almost everything?
“I can’t sleep.”
“I dislocated my foot.”
“I have a pinched nerve in my shoulder. My arm feels like someone set it on fire. All day.”
I’ve never taken them. I think that I have not spoken up about it because I wasn’t sure. I know that I shake and sweat and that it wakes me up. But I just wasn’t sure that it was being caused by the drug. I suspected anxiety. Anything that changes my mood except coffee and wine cause anxiety. At least in my adult years. So I may not be saying it correctly. Maybe I phrase it more like a question.
“I have a paradoxical reaction to opioids and benzodiazepines?”
That questioning inflection at the end. Nobody wants an indecisive patient.
When we lived in Oklahoma, a few incidents made my problem a little more clear. In the first incident, I dislocated my foot while playing ultimate frisbee. The EMT’s came.
“Do you want anything for the pain?”
I was in a lot of pain. I couldn’t make up my mind.
My co-worker, Jarred, was taking pictures of my foot (it was nasty) as they worked on me. He looked at me and said, “Yes you want something for the pain.”
“Yes I want something for the pain.”
Seconds later I was sweating and shaking and my mouth was dry. The pain was still there.
“Do you need anything else?”
“Something to drink? I need some water.”
“Nope. You’re going into surgery. That looks nasty.”
I didn’t end up needing surgery.
In the second incident, I was having a Lasik procedure. At the information session, a nurse went through all of the steps.
“First we’re going to give you a Valium. Then we’ll put some drops in your eyes to paralyze your eyes. Then right before the procedure, we’ll give you some morphine.”
“I have a paradoxical reaction to benzodiazepines and opioids? I shake and sweat a lot on both? Is that okay?”
“Okay cool. So have someone drive you here at 6am…”
Each time someone in the practice described the steps in the Lasik procedure, I said, “I have a paradoxical reaction to benzodiazepines and opioids?”
So the day of the procedure, they gave me a Valium. I waited a while. Then they gave me some drops to paralyze my eyes. Then they moved me to the procedure room. They gave me a shot of morphine. I got on the table, laid my head back, and started shaking.
“You’re shaking! Um…”
“I told everyone in this room that I had a paradoxical reaction to benzodiazepines and opioids and that they made me shake and sweat. Now you’re surprised?”
Opioids also apparently make me a little aggressive. They put a weighted blanket on me and held me down while they used some lasers to cut my eyes.
After six hours of surgery, I woke up in post-op. I’m not saying that I was entirely coherent, but this is what I remember: There was a very short man emptying the sharps container. That was the very first thing I saw. A nurse to the right of me was trying get a cart around my IV poles and kept bumping the bed and apologizing. Another nurse sat in a chair at the foot of the bed. I lifted my head a little bit.
The nurse in the chair said, “Do you want something for the pain?”
I felt around for a bag or tube coming out of my stomach.
“No colostomy bag?”
“What? I don’t know.”
“I don’t feet any tubes or bags coming out of my stomach.”
I felt relief. Then guilt. Why did that mean so much to me?
“Do you want something for the pain?”
She kind of slurred when she spoke. I don’t think she was intoxicated. It was a colloquial slur. Like an accent or a speech impediment.
I said, “What do you have?”
“Morphine or Dilaudid.”
I had discussed this paradoxical reaction with my friend Elysa at some point. She told me about how they had given her Dilaudid when she was hospitalized for bowel surgery. She loved it, and she had problems with Morphine.
“Hmm… Dilaudid? I’m not sure…” I sucked air in sharply and sat straight up. “What did you do?!?!”
The nurse’s eyes were wide open. She was frozen with the IV line in her hand.
“I didn’t tell you to give it to me!”
Just then two guys came in to wheel me up to my room. I was burning up and sweating and shaking. I was wide awake.
I don’t remember who was with my mother when I arrived back in my room. I think it was Troy. My escorts pushed the gurney next to my bed and held all of the tubes and wires up in the air. I crawled over. My mother was sitting in the chair.
“They gave me Dilaudid. The bastards gave me fucking Dilaudid.”
I was so offended. I recounted the whole thing. I don’t remember anything in those first few hours after surgery besides waiting on the Dilaudid to run its course. Opioids are so unpleasant for me. Troy has this funny story where he describes the first few minutes after an opioid is administered. “Pain. Pain. Pain. Warm titties.”
I am seriously envious that I don’t get the ‘warm titties’. So many people describe opioids as this wonderful experience.
“I have to have my appendix out this week.”
“Oh man that sucks. At least you’ll get to do a bunch of great drugs.”
Nope. No ‘warm titties’ for you son. Have some pain.
At this point, I had still not slept outside of anaesthesia since my arrival at the hospital. I may have dozed a few times, but not for long. I was crazy tired. I stopped mentioning that I hadn’t slept to anyone, doctors and nurses, because inevitably someone would say, “We could get you some Xanax.”
Holy shit with the Xanax. They talked me into a Flexeril that first day. I slept for forty five minutes I think. I woke up plastered and still in pain. They tried to talk me into Tramadol. I have some in my cabinet right now. I’ve never taken it. I just needed to sleep.
I heard Fight Club quotes, “Chew some Valerian root and get some more exercise… You wanna see pain? Swing by First Methodist Tuesday nights. Go see the guys with Testicular cancer. That’s pain.”
The wise words of a coder I had worked with in Oklahoma, “You don’t get to Valhalla dying in a hospital bed.”
I wanted to get up and walk. Oh what the hell is that?
“Is that a catheter?”
My mother,”Probably. Why? What do you want to do?”
“I want to get up.”
A nurse walked in right at that moment.
“Can I get rid of this catheter?”
“Are you sure?”
“Yes I want to get up.”
“That’s funny. I was just coming to tell you that they are going to want you to get up.”
“That’s good because I want to get up.”
The catheter is such a weird experience. I hope I am never awake when they put one in. It feels bad enough coming out. It’s a strange humiliation. The feeling of it coming out. With my mother in the room.
I stood up. It wasn’t that bad. I wasn’t ready to fight my way to Valhalla, but I was upright. I went to the bathroom. I stood around for a while. Maybe a few seconds. Then I went back to bed.
Many times throughout the next six days, I wondered if there were a way to prepare someone for what I went through. The day of the surgery was nothing. I still wasn’t sleeping. I was up and walking around. My abdomen ached. I was aware that something was different. But it wasn’t that bad. Not yet. The doctors and nurses said things and asked questions that only took on relevance later.
The nurses didn’t need to battle to get me out of bed. Now the battle was about getting me to sleep. No one wanted to sleep more than I did, but lying in bed after surgery just sucks. I didn’t have anything else that I wanted to do. I had no energy. I just wanted the oblivion of sleep.
There was the usual array of visitors that stopped by regularly. I appreciate everyone for coming to see me. Everyone that called even if I didn’t answer. Texts. Facebook messages. I had, and continue to have, so much support.
Justine stopped by with the kids. They didn’t stay long. I don’t blame her. I was not well. All of my attention was inward. I can’t imagine how I must have looked. Still it was good for them to see me on the other side. I asked questions about the first day of school. I don’t remember the answers.
My mother spent the night that day of the surgery. I tried to sleep. I would open my eyes and see her. She looked so uncomfortable in the recliner next to the bed. I was so grateful that she was there. Up until that moment, I hadn’t considered her experience. I thought of myself and my own kids. My mind kept returning to how were they handling things. How could I negotiate this crisis to make it easier for them?
My mother had a son in the middle of a medical crisis. I can’t even imagine what that must be like. My daughter’s three ear tube procedures were hard, but I never feared for her life. There was a time when Lucy had a stomach bug that wouldn’t quit that I took her to the emergency room. They checked her in very quickly because she couldn’t stand on the scale to be weighed. She was dehydrated. I held her hand as they put the IV in her arm and pumped her full of fluids. I watched her lips inflate as the fluids filled her body.
The natural order of things is that the parents die before the children. I know that it happens often outside of that order, but it is still how we hope and dream. Our kids will outlive us. We have done our job. But there she was at seventy seven sleeping in a recliner with her forty nine year old son in a hospital bed.
I didn’t sleep that night. It was Monday night. Outside of anaesthesia, I hadn’t slept since the previous Wednesday night. The night before I woke up bleeding out of my ass. Five nights of no sleep. My discomfort was growing.
I talk to myself a lot. I say some terrible things. In front of my kids. I don’t often hear the things that I am saying, but sometimes they let me know. Apparently my most often used line is, “Kill them.”Continue reading “my life is hit by a truck part 3”
With the news from the CT scan behind me, the logistics of confirmation and testing and the minutia involved in all of that began. I remained in ICU as they really had no idea whether I was still bleeding internally. They wanted to keep an eye on me and continue to monitor periodic lab results like hemoglobin.
Also, a colonoscopy needed to be done. If you know anything about colonoscopies, you know there is prep work involved in this. That means cleaning you out. There can be nothing in your colon when they shove that camera up your butt. The gastroenterologist that was to perform the colonoscopy came to visit.Continue reading “my life is hit by a truck part 2”
After a summer of travel, I was a little done with social activities. It was wonderful reconnecting with friends and family. It was just a lot. I was looking forward for some time to process everything that had happened.
I went back to work. Around this time, I realized I wasn’t going to be working for Chevron after the contract ended in August, so I started looking for a job. Then I started on the business of getting the kids back to school – clothes, uniforms, school supplies, registrations – Justine did most of this. I also started looking for a new place to live, because it was apparent that I wasn’t going to have a roommate anymore and I hated the place we were living. It was too dirty. One of those places that will never be clean.Continue reading “my life is hit by a truck part 1”
On the subject of 20/20 hindsight. There are many things I could point to now that were out of alignment leading up to the emergency on August 22, 2019. At the time, I wasn’t thinking of them as symptoms of anything but age, stress, depression, newly single over indulgence, and maybe some laziness.
I was depressed for sure. Justine’s illness beginning in 2016 was the start of a snowball that I never recovered from. I won’t detail everything that happened in the 3 years that span August, 2016 to August, 2019, but it was a lot. Anytime I thought I had some air, the downhill roll would start again. I kept telling myself that all I had to do was keep putting one foot in front of the other. Do the next right thing. These are cliches I would have told me if I had come to me for advice.Continue reading “what is what”
It’s hard to have a sense of humor about kemo (my daughter’s spelling – I’m going to stick with it). Once it’s happening, there’s no turning back. A path to wellness through more sickness. Maybe…
I have had problems with anxiety for as long I can remember. Racing heartbeats, stage fright, social anxiety, whatever… It’s always there. I have landed in the emergency room more than once. I’ve been through long periods of chronic episodes and single episodes that blindside me. Over time, I’ve gotten better at dealing with it. I’ve developed little tricks for dealing with anxiety.Continue reading “Airplane Glue and Burning Tires”
For the last four weeks, I have been engaged in a job search. My contract with Chevron ended when I was in the hospital (it was a six month contract). We don’t live in a socialist utopia, and I am not rich. So I have to keep working.
For reasons outside of the scope of this writing, I have had a lot of jobs in my life. Which means I have often had to look for work. In the 90’s, I developed some philosophy and methods around looking for work. Spend as much time looking for a job as you plan on working at that job. So if you plan on working 40 hours a week, spend 40 hours a week looking for a job. Go to every interview. Even for jobs you know you don’t want. You can’t turn down a job you don’t have, and you just might be surprised at how different the job sounds when you are actually talking to someone you might be working with. Also, going to a lot of interviews gets you out of yourself. People can feel when you are there just trying to impress them. I generally go for the laughs and try to talk people out of hiring me. It works.
I have not used a lot of these methods since around 2008. People call me all the time. So all of the jobs I have had in the last 10 years have just been through people I know or recruiters finding me. I have sort of avoided the large employment survey that I invented for myself.
Getting out of the hospital, I knew I needed to work, so I just did what I know how to do. I started a 90’s, 40 hour work week, survey of corporate Houston. It also kept me busy. I don’t want to sit around thinking about cancer. That’s why I’m writing about cancer. It gets these thoughts out of my head. I find that I get a brief respite after the writing.
As this week began, I had 3 companies ready to make offers. They all have their advantages and disadvantages. Commute time vs culture vs money vs company size. I told them all that I was not available on Thursday or Friday of this week knowing that I had a Central Port surgery today and the first chemo infusion tomorrow. Of course, one of them wanted to meet me face to face today. I didn’t know what to say. I didn’t even know what time the surgery was going to be. They only tell you the day, then they call you at 6pm the day before to let you know. I was just going to refuse the interview. Then I said, “I’ll let you know by 10am if I can make it by 11:30.”
So this morning I had a port installed in my chest. Beginning tomorrow they will use this port to deliver chemo. My arrival for pre-op was scheduled for 5:30am. My mother spent the night with me to get me there, and to take me home when I was all drugged up.
There are the usual questions asked by everyone involved. Have you been out of the country in the last 90 days? Are you allergic to anything? Have you ever had a blood transfusion? Every member of the surgical team asks these questions. I interrupted many of them before they started talking. “No I haven’t been out of the country in the last 90 days.”
The description of the procedure is pretty standard. We are gonna cut you here and slice you there. Then we’re going to close you back up. But the anesthesiologist perked up my attention a bit. Sedation not general. I was going to be awake while they sliced into a major vein in my neck. Interesting. Then one of the nurses asked me to name the doctor doing the procedure. I did. She said, “Oh he’s going to sing to you.”
Most of surgery is preparation and recovery. A good deal of that preparation for me is emotional. It’s all about answering the alarms. “They have prescribed three different pain killers for this procedure. I wonder what that means.”
I met the doctor. I asked him a good number of questions about how the procedure was accomplished. The mechanisms of catheterizing a vein that kept it from leaking. I asked which vein. He told me he was going to install the catheter in the jugular vein.
I said, “That sounds scary.”
“It is scary,” he laughed. I laughed with him. “But I have been doing this procedure for 20 years. When the catheter is installed in the jugular vein, it is less likely to clot.”
“You must do this a lot. Do you do any other procedures?”
“I used to do other procedures, but since I came to MD Anderson, I only do Central Ports.”
“I have done this procedure over 12,700 times.”
“Whoa. So I was reading that Avantis shouldn’t be administered within 28 days of a surgery because of the bleeding and all that.”
“In the 12,700 times I have performed this procedure, the catheter has only separated ONE time, and that was my fault. I only had a little bit of tubing left, so I only had a small bit left to clamp down. When under pressure, the tube separated. Now I will just open a new tubing package. So that was one time and had nothing to do with a side effect of the chemo administered through the central port.”
Every answer sounded like he had given it a thousand times. Not because he was boring, but because he was animated. Almost rehearsed. He talked without pauses. Like a weatherman explaining how the moisture was going to push off to the east outside of Punxsutawney.
“Did that answer your question,” with a smile.
“That more than explained my question. I feel unworried about that concern now.”
“Any more questions?”
“No. I think that covers it.”
“All right, I’ll see you in the other room.”
Minutes later I was wheeled to the other room. A room I was warned would be ice cold by the nurses and confirmed by my nurse mother. I was convinced that warm blankets were a good idea. The other room was a perfect room temperature.
Versed is a strange sedation that I have had a few times. I didn’t actually know that I was sedated. I had the idea several times to remove the overly warm blankets or to say something or to reach up with my hands to feel what he was doing mucking about inside my neck. I never had the sensation of can’t – like I want to do that but I can’t. It was more like – I don’t feel like trying.
About halfway through the procedure, someone turned on some music. The doctor started singing “What a Wonderful World” while mucking about inside my neck. Then it was “Beyond the Sea” followed by others that I can’t recall right now. During each, I thought I should join him, but then I didn’t want to try. He was doing such a great job. The nurse was wiping my chest and neck repeatedly.
In Post-Op, I started to snap out of it. I was asked for a urine sample and the nurse gave me my clothes when I went to the bathroom. I filled the sample cup and took the gown off. I saw what why the nurse had been wiping my chest and neck because she was unable to get all of the blood.
The picture totally changed for me. The doctor playfully singing “What a Wonderful World” became the doctor singing “What a Wonderful World” while cutting into the jugular vein in my neck. Blood pouring down my neck. A scene from a horror movie. I knew it was probably still as playful as it seemed, but I love the image. It made me laugh.
We were all wrapped up with neck catheters by 9:30am and I felt stupid, so I texted the recruiter with the company that wanted to see me at 11:30 to tell them I would be coming. My mother drove me home still all drugged up. I changed. We ate some bagels. I changed my clothes. Then we drove over to the Galleria/Uptown area – only a couple miles from my new apartment.
As I waltzed through the beautiful lobby singing “Beyond the Sea” under my breath, the drugs wore off and I wondered why the fuck I had agreed to do this. Just then, my main contact introduced herself. Finally face to face. I met her colleague. We sat in a very nice conference room talking about computers and people not knowing what they want. Writing code. Servers. Organizational difficulties.
They asked me questions about my approach to working with people and promoting change. I queued up an answer I have carefully crafted over the last four weeks of doing interviews for jobs that I didn’t want. I sounded rehearsed. I left no pauses between my thoughts, because it is annoying to be interrupted before finishing my thoughts.
Suddenly I was aware of the tube sticking out of my chest underneath my shirt. The blood that still really hadn’t been cleaned off of my skin properly (I can’t shower until Monday – doctor’s orders). I had just come from surgery to an interview that I was still uncertain I would be able to do while on chemo. Then I was back in the room with my canned answers and my rehearsed jokes and smiles. And I thought, “Sure I can do this job 12,700 more times while on chemo. The only time I really ever couldn’t do the job is when I thought I couldn’t.”
I accepted their offer an hour ago.
I wanted to write about chemo before I actually take it. There is always the anticipation of something and the reality. The reality often obscures the anticipation fantasy.
I am terrified of chemo. Our culture builds up chemo to 90’s apocalyptic horror film status. It’s hard to be alive right now and not have some emotional response to the word.
Professionals along the way have tried to downplay the severity of the side effects while also making sure that I understand that the side effects can be severe, even crippling or deadly. Playing both sides of the fence. I understand the dilemma. I’m relatively young for colon cancer. I recovered from a bowel resection pretty quickly if not miraculously. It’s 2019 and chemo technology is more targeted to specific cells. I’ve already been prescribed two antiemetics that supposedly work very well to control the nausea.
Although Folfox is fairly generic, I’m sure the dosage is more controlled, but the neuropathy is a guarantee, because it kind of starts dissolving the nerve sheathing. Avastin’s side effects look horrific if you get them. Watering eyes, GI perforations, bleeding, strokes, death, dying, Trump re-elected or one of the Democrats that’s running beats him, dogs and cats living together… Don’t worry, if I do get the worst of the side effects, I’ll still be in the hospital because while unlikely they mostly happen during the first dose. So there will be plenty of professionals to confirm that I shouldn’t have taken that. When I go home, I’ll have family or friends here from Friday until Sunday (when I go back to have the pump removed), so at least there will be some adults around to observe my demise.
Seriously, terror seems to be an appropriate emotional response right now. Maybe nothing will happen. It’s just such an unknown. Maybe everything will be okay. The conversation is just so full of contradictions and disclaimers.
“You have cancer. I know you feel fine and have no symptoms since we stopped that inconvenient bleeding out of your ass. Now we’re going to make you really sick. Well not really. You’re really strong. You should be fine. Yeah you’re going to be really fucking sick. We’re going to do surgery the day before to stick a device under your skin. It’s a port for us to put toxic substances straight into your neck. Yes your neck. You’re younger than a lot of the people that have had terrible side effects. Well no there have been people your age that had these side effects. To tell the truth, we just don’t know. We’ll let you know if you’re dying after we give it to you.”
Terrified. Amused at my own terror. I’m going to do it anyway, and we’ll see what happens. Here hold my beer.
Food is weird. There are a whole lot of experts out there that will tell you what you should be eating even when you don’t have cancer. But then you get sick, and you get a whole lot of advice. It isn’t just cancer. It’s every illness.
I’ll tell you this. There isn’t a whole lot that’s surprising where diet is concerned. And having already attended a GI Cancer Dietician seminar, there isn’t a whole lot that’s agreed upon about diet. There’s the obvious – cut out sugar, fried foods, processed foods, and red meat. Don’t char the lean meats you do eat. Eat whole foods. Yes that’s all pretty obvious. It’s basically what a dietician or nutritionist that didn’t specialize in GI Cancer would tell a perfectly healthy person.
What caused the cancer? Why do some people get it and others don’t? Why is there a spike in people in the their 40’s with colon cancer? Why is there a decline among those in their 60’s and 70’s? There are theories. I bet the theory that just popped into your head is among them. I look forward to your nobel prize in medicine.
Over the last five years, I have noticed a declining interest in sugar. I simply lost the taste for it. Chocolate, candy, cake… It all tasted horrible. I attributed this change in tastes to age, but then I had half my colon removed. The tumor was not small. It must have been growing for most of the last five years. Suddenly everything tastes the way I remember it tasting. Chocolate is good.
Of course, I’ve also completely stopped drinking alcohol. It seems a little irresponsible to be drinking alcohol with a tumor in my liver. Perhaps the removal of alcohol from my diet created a craving for sugar. Maybe wine or beer just changed that taste enough. Beer and chocolate aren’t a good mix anyway.
My point is that there are thousands of variables in what causes illness and changes in the body. It’s a good idea to cut out sugar and alcohol anyway. So what the hell. But if I shove a piece of chocolate in my face every now and then, I’m not going to cry about it.
I read Frank Zappa’s autobiography/memoir a long time ago. Zappa died from prostate cancer. He talked about loving fried food and made it sound like he just wasn’t going to stop. Cancer be damned. In his last televised interview, Zappa was smoking cigarettes. When asked about the smoking in relation to his illness, he said, “To me a cigarette is food.” and “Tobacco is my favorite vegetable.”
I find that amusing, but not a place to make my last stand. I’m going to do the best I can with diet, and certainly I’m not going to take up smoking again. But who doesn’t struggle with diet? Who hasn’t said to themselves, “I probably shouldn’t have eaten that.” (That’s what she said – couldn’t help myself.)
Of course, once the chemo starts, you eat what you can. Who knows what you can eat? Most of the things you find through Google involve maintaining hydration, electrolytes, and body weight. I don’t get the sense that there are any hardened rules about what you can and can’t eat on chemo. You eat what you can. I’ve already lost a bunch of weight just with the surgery. I call it the colon cancer diet. I wouldn’t recommend it, but it does work.
So I have colon cancer, and I’m going to write about it. I have been holding off on writing about it or giving a real update until I had all of the information. I have learned that it’s not a good idea to give any information when there are still outstanding questions because it leads to a lot of questions that don’t have answers. That’s the reason I have been holding off. Having the information is not why I’m writing about it. I want to write about it.
I want to talk about cancer in a way I haven’t seen. I want to joke about cancer. I want to joke about my death. I am not dying. I suppose I could die. I could die in a car crash tomorrow. It’s not all jokes. I am terrified, but I also have general anxiety disorder. I was going to be terrified of something anyway. Might as well be something real.
I hate the personification of cancer. I am not the first to say this. I noticed this personification in our culture before I had cancer, but it didn’t bother me like it does now. I suppose it had nothing to do with me at the time. I have a disease called colon cancer. No reason to give it any more power than influenza or heart disease. There is no consciousness. I don’t need to take this personally. Cancer exists. I am a human being. I have cancer. If personification helps others in dealing with cancer, that’s great. I’m all for it.
So after that introduction, I wanted to give an update of where I am. I also wanted a place for me to reference this information as my treatment progresses. My mother and my sister in law, Barbara, attended my oncology appointment on Wednesday where my oncologist proposed his plan for treatment. My mother has been a nurse for most of her life and all of mine. She has been there for me from the beginning. Barbara is a pathologist and offered to accompany me through this process as an advocate and to provide context. I was going to put all of this information in my own words, but Barbara knows way more than I do about this subject. She also took great notes and wrote an email to my family. There is no better way to describe it. I have redacted part of her words – doctors names, etc.
Personification and faith bring me no comfort. That doesn’t mean I don’t appreciate the sentiment. Words of encouragement (including personification) and prayers are appreciated. I recognize these efforts for the care and love intended. I can really feel that love and care from so many people.
Science is a true comfort to me. Understanding. So Barbara’s description, and the relief I could feel from her as the oncologist described my current state and his treatment plan, affirmed my own understanding of his words and prompted my own relief.
Chemo is terrifying to me, but ya know, I’ve probably done worse to myself. Maybe… (It’s hard not to be superstitious.)
If you need the cliff notes version, I have a tumor on my liver that is the same cancer that was in my colon. I start chemo on October 4. Then every two weeks after that for two months. Then the liver surgeon will remove the tumor from my liver. Then I will have an additional four months of chemo every two weeks. The good news is that the tumor in the liver is operable and there is a good chance that I could be disease free.
Appointment today at MDACC with colorectal oncologist.
Review of CT scan from abdomen shows a solitary metastasis of colon cancer in the left lobe of the liver measuring approximately 3.5 x 4.5 cm surrounded by at least three smaller “satellite nodules” (very small <1 cm nodules that most likely are smaller metastases surrounding the bigger tumor). Tumor is in a location that can be easily removed, and is NOT near major vascular or bile duct structures, or “between” liver lobes as we were lead to believe by St. Joe’s physicians.
The remaining CT scans of chest, abdomen and pelvis show no other signs of cancer. Inflammatory changes remain in the area of previous colon resection and in the surrounding lymph nodes, but this is to be expected at only 4 weeks post-op.
Lab values: Hemoglobin 11.9 (slightly down from normal around 14) but to be expected post-op, liver enzymes ALL completely normal (very good sign) and elevated CEA (carcinoembryonic antigen, tumor marker for colon cancer) at 446.5 (related to liver metastasis still producing CEA).
Side-bar consult of Oncologist with Liver Surgeon: CT scans were quickly reviewed and Liver Surgeon felt liver tumor is resectable (either before or after chemotherapy) but both agree that giving chemotherapy up front is wisest, as getting the liver mass to shrink will be more advantageous at time of surgery. Goal is to remove the liver metastasis and make Larry cancer free.
Larry will be receiving a very commonly used, well tolerated, first-line chemotherapy regimen used for metastatic colon cancer called Folfox and Avastin. The Folfox is a mixture of cancer fighting agents and the Avastin is an endothelial growth factor inhibitor that actually starves the tumor cells from making new blood vessels and being able to grow, recur, or metastasize. This regimen has shown great success in treating metastases and in preventing tumor recurrence. Further in-depth information about each is available below if you care to read more.
Therapy will be given once every two weeks with each cycle followed by rest period before the next. He will go to MDACC to receive the main infusion on a Friday, then go home with a pump to deliver the remaining drugs over the next two days, and return to MDACC on the following Sunday to have the pump removed.
The tentative plan to start will commence with his first cycle of chemotherapy delivered on Friday September 4. The first dose will be delivered through a PICC line (peripherally inserted central catheter) in his arm. After dose one, he will be scheduled for the insertion of a central catheter with a port that will deliver the chemotherapy directly into the large vessels of his neck and chest, leading to more efficient dilution and delivery of the chemotherapy to all vessels of the body. The insertion of the Port-a-cath will be done under anesthesia, but is a very quick, routine surgery. The port will remain hidden under the skin of his chest and will be used for delivery of the remaining chemotherapy dosages. It is removed after all chemotherapy is complete.
Oncologist plans on delivering at least 4 cycles of chemotherapy (2 months) up front. Then Larry will have repeat CT scan of the liver lesions to see if there has been a response (decrease in size of main mass, disappearance of smaller satellite nodules). This will help determine the right timing for the liver tumor resection. A formal consultation with Liver Surgeon to go over the CT scans and proposed liver surgery will be forthcoming.
If all goes to plan, the liver surgery will occur after 4 cycles of chemotherapy (approximately December 2019), followed by at least 4-6 weeks of healing and recovery. Then chemotherapy will be resumed for another 8 cycles (4 months) after healing to complete a total of 6 months chemotherapy.
Side effects of the chemotherapy can vary, and are highly dependent on each individual’s response. Some of the most common side effects mentioned today by Oncologist include numbness and tingling of the mouth, feet, hands and throat (due to a peripheral neuropathy caused by the drugs), sensitivity to cold (especially the throat, should drink things at room temperature and no ice cream), sensitivity to sunlight and increased chance of sunburn. Other more common side effects like fatigue, diarrhea, and ability to work seem to vary by each individual, and will be best judged after Larry experiences his own body’s response to the chemotherapy.
I left the appointment today feeling very encouraged and positive about the proposed treatment plan and physician who will be leading the team for Larry at MDACC. I believe that his care is in some of the best hands in the world, and that complete remission is his achievable goal. He will need all of us over the next 6 months, but I am certain that he will have all the love, care and support he needs from a family that loves, treasures and respects him deeply.