One year ago in July, I was in New Jersey visiting family and friends, some of which I hadn’t seen in thirty years. In June of last year, I visited friends, a high school reunion of sorts, that I had also not seen in thirty years. For a long time, I had imagined these family and friends as within reach and easy to see whenever I wanted. What a difference a year makes…Continue reading “Living With Cancer”
I’m so alone and I feel just like somebody elseOne Headlight, The Wallflowers
Man I ain’t changed, but I know I ain’t the same
One weekend in late October, my sister, Kelli, stayed with me during a chemotherapy weekend. The treatments were fairly routine by this time. As routine as a chemotherapy treatment can be when each is its own odyssey. Still, I was over the initial anxiety, and I thought that I had leveled out. I was wrong. I had a blood pressure spike, and I was out of my mind.Continue reading “the end of something”
Your ship may be coming in.Rilo Kiley, A Better Son/Daughter
You’re weak, but not giving in.
And you’ll fight it, you’ll go out fighting all of them.
At the end of 2018 and the beginning of 2019, I was driving ride share – killing time and making some extra money while waiting for my friend/colleague Ramon to close a contract that never came through. The contract was four weeks on and four weeks off in the mountains of Argentina doing real time drilling data management and analysis. It seemed like it might be the change I needed right then, but it was one of those contracts that my friend just couldn’t close. In hindsight, I shouldn’t have waited. I should have just found something else, but while I waited, I entertained myself with ride share.Continue reading “death, dying, politics and fuck you”
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…Continue reading “what is left of us”
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.Continue reading “six time six”
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.