The Human in the Arena - Larry Lines
The door opened on a man that looked to be in his eighties and another man in his fifties.
“May I help you?” the older man asked.
“Yes. That’s me.”
“It’s your son. Larry Lines.”
“Goddammit. I don’t recognize my own son. Come on in.”
The last time I had seen my father in person was 1994 outside of my brother’s house in Spring. He had driven down to Texas with his wife, Joyce, to see us. That was twenty-seven years ago. We hadn’t been completely out of contact. He sends texts around the holidays, Christmas or New Year’s Day. In several group texts a couple years ago, he gave us the details of his struggle with shingles.
“This stuff is not fun. You do not want the shingles. Get the vaccine.”
These communications are never initiated by me. I gave up a long time ago. I resented him. I still do, but in December of 2019, I sent him some texts about my cancer. Something in me has softened. I couldn’t think of a reason that he shouldn’t know that I have cancer. I can’t think of a reason to hate him. I’m not sure that love is an appropriate word to use in this situation, but he is my father.
In the weeks previous to my trip to San Diego, I wondered whether I should go see him in Escondido, and if I did, whether I should surprise him or text him beforehand. I decided to surprise him. I really wanted my kids to meet him. If I gave him a chance to back out of a meeting, he might just do that.
“Well. My partner and my kids are in the car. Is it all right if they come in?”
“Yes. Of course.”
We visited with my father and Joyce for a while. The other man that answered the door with my father was Joyce’s son, Chris. He left shortly after we arrived. Joyce was a little out of sorts having just received some unwelcome health news. I peppered them both with questions about their lives. I was really trying to keep the conversation going for the benefit of my children, just to see us interact a bit, but I did find out things I hadn’t known previously, my father’s years in the Navy, 1957 to 1963, Joyce’s years at the LA Times.
At some point, I decided that my little surprise had gone on long enough, “Hey. I didn’t want to steal your whole day. I know you have things to do. We are here until Thursday. If you want to see us again, we can come back.”
My father offered for us to come back for dinner on Wednesday night, the night before we were to return to Houston, and we left. He cancelled on Wednesday afternoon forty-five minutes before we were supposed to be there. I was relieved. I was also glad that I had surprised him rather than asking for his time. My goal was for my children to meet him. If I had asked to see him, it would have never happened.
I have many impressions of the time, but they don’t seem relevant. I have said many things over the years about my father. I have resented him. I have talked about him. I have recounted incidents. I would have thought that I had more to say about this visit. It seems like an epic moment. I talked my way through the security gate with little incident. The security guard even gave me directions to his home. I knocked on his door with no warning. I brought my whole family into his house. I have cancer.
Twenty-seven years. You would think I would have more to say about that, but I don’t. I accomplished what I set out to do, my kids met my father.
The rest of the trip to Carlsbad to visit Yolanda’s family was fun. Her three children and my two got to meet and stay in one place for a week to get to know each other. I met her sister, brother-in-law, mother, niece… As much as the visit with my father was anticlimactic, the visit in general was beautiful. I wouldn’t know where to begin to describe the whole thing. Lots of family time, food, and California weather in August. It rarely cracked eighty degrees the whole time we were there.
And I got my beach. I spent a lot of time staring at the ocean and swimming, the water ice cold, the waves pleasant. At Coronado Beach, the sand has golden flakes of mica that glitter in the sun. The sand is stirred up in the surf, so the water also glitters with gold. I tried to get a picture of it, but it just looks like sand. Beautiful white sand but just sand. There are some things that can’t be captured with photography just as some experiences can’t be captured in words: connections among people, resolution of unfinished business, standing on the edge of a continent, the relentlessness of chronic illness.
“The guidelines we follow at MD Anderson are that if the tumors we select as markers grow by forty percent in the allotted time between CT Scans, then the treatment isn’t working.”
I knew the TP53 treatment wasn’t working a few weeks before this phone call with Dr. Dumbrava, which took place while we were in California. I don’t know how I knew, but my intuition has held up so far.
“Okay. What’s next?”
What’s next ended up being an immunology trial that had already been approved for other cancers. I don’t remember the details of this drug. I looked it up shortly after this conversation, downloaded some PDF’s, asked the study coordinator for any information she might have, and then I didn’t read any of it. This drug also involved very few side effects, which was a welcome break. I felt something happen inside me for the first few weeks of the treatment, then I felt something shut that down. Two months later, I was not surprised when Dr. Dumbrava told me that it wasn’t working.
“I felt something happen, and then my body shut it down.”
“Unfortunately, there is another common mutation in the K-RAS gene. This gene tells the cell nucleus to grow and divide when it is switched on. In many cancers, the gene is mutated and tells the cancer cells to grow and divide. So, we see some treatments start to work, and then the cancer adjusts and tells the cells to keep growing.”
“I have this mutation.”
“Yes. There are some drugs that have worked on other cancers, and the studies on colon cancer are showing promise. The drug we have in trial now is for the G12C sequence. Your mutation is on the G12D. There is another study in the works for a phase one trial possibly in the first quarter of 2022, but they are waiting for FDA approval for this study. We have no way of knowing the timeline on that. I don’t want to give you false hope.”
“I understand. KRAS? G12D?”
Dr. Dumbrava nodded, “We don’t have anything to start you on right now in the CTRC, and your cancer continues to spread. So, we are going to send you back to traditional treatments with Dr. Kee. I will always be available to you if you need anything. Please let me know.”
Back in Dr. Kee’s office, one of the nurse practitioner’s that I don’t see very often handed me a couple sheets of paper with my blood results.
“I see these results on my phone. My bloodwork looks great.”
“Do you want to go over the CT Scan results?”
“Okay. I just have to ask. Many people don’t want to know.”
I don’t like this nurse practitioner very much. I don’t know why. There is something about medical care that becomes intuitive. It isn’t about receiving bad care, although sometimes that is what it’s about. It’s about engagement or something like that. I could, and have, speculated about what that means. Perhaps they are just counting the hours until they go home. I have had jobs like that. Maybe it’s just that they have a low social or emotional IQ. I have no idea, but I do know that there are certain people that don’t fit into my project, and that is how I feel about it now. This is my project. You are a member of my team because I am the subject of this project. I am in charge. I know when a person isn’t a proper fit. They could be a proper fit for someone else’s project. I am not making a competency judgment. I just know what I am looking for, and in this case, I have had medical assistants that take my blood pressure that were a better fit for my team than this nurse practitioner.
I do know that I can’t see Dr. Kee or MacKenzie or Dr. Dumbrava every single time I go to MD Anderson. Sometimes they are busy with people that are in more critical states of care. I also understand that they want to rotate through the whole team so that each nurse and nurse practitioner is personally familiar with each case. I just don’t like this one.
She handed me two information sheets for two separate drugs. The impression I got was that these were not frontline chemo treatments. There were percentages for them working at all, both somewhere in the neighborhood of fifty percent of people that took them. And both of the drugs were not expected to kill the cancer but to halt the growth.
“So, it looks like we are running out of options. Is that what I am to gather from this?”
“Yes. These are the two standard of care options available right now.”
“Okay. And it looks like one of them might halt progression for two or three months and the other could work for slightly longer, if they work at all.”
“Yes. That’s correct.”
“So, if I neither of these work, I could be looking at serious progression and things getting bad very quickly.”
“Yes. That is correct.”
“I could have maybe six months to a year of no progression if these drugs work.”
I didn’t like the look on her face. There is something completely off about this interaction. I don’t know if I can’t describe it properly or if I just don’t want to scrutinize it. Later, I found that Yolanda had a similar reaction, not that I needed to ask, I could feel her bristling next to me.
“Do you want to speak to Dr. Kee?”
“It would be nice to see him.”
She left the room for a few minutes and returned with Dr. Kee. I could see that he was in the middle of something else, and he was incredibly agitated. I felt a little better. If the news were that big, he would have been in there himself. It was still big news, but not as big as she made it out to be. He briefly went over the information with me, shook my hand, and left quickly. I felt a little better about the world, but not that much better. We made the decision to go with the Lonsurf plus Avastin.
Throughout this whole process, death has seemed like it was over there, a long way off. I have always known it was a possibility, but it feels a lot closer now. The truth that sticks with me from that conversation with the nurse practitioner is that my options are running out. There are always drug trials. There is even another standard of care drug. But that is a much different place to be than where I was two years ago. Death is no longer over there. Death seems like a likely outcome.
I received this news in the middle of moving. So, everything has been up in the air for months. It’s always easy to forget just how disruptive moving can be. But it really broke my routine.
I also decided to complete my degree at Berklee College of Music. They have an online degree program. My credits from the late eighties/early nineties are still valid, so I am more than halfway done. I have never finished my degree because Berklee is so specialized that you can’t really transfer the credits to another school. It was a big decision that I have been toying with for a while, but it just makes sense now that I am on disability. I qualified for financial aid, and I just went for it. It seems like such a strange thing to do with everything going on in my life, but it seems even more bizarre to not do it because I might die. It’s almost like preparing to die.
Which leads to the contradiction of knowing that my options are running out. I had to let the people around me know that death might be a little closer. Those were all tough conversations: my mother, my siblings, Troy, my children… I still have a couple more that I should talk to in person before putting this blog entry out, but I have lived with this information for a while. I need to write about it.
I forgot what Berklee classes are like. There is no checking the box on the degree program. If you take a class, they expect you to learn that subject. I only took two classes, Berklee Keyboard Method and Music Production. The semesters are 12 weeks long. They expect you to learn piano in that amount of time starting with blues and basic jazz and ending with jazz piano voicings in one hand and melodies in the other. Every week of Music Production was a revelation.
I didn’t have time to write, or that’s what I tell myself. At some point, Yolanda complained that I hadn’t written a blog post in some time.
“I miss your blog. When are you going to write another entry?”
“If you haven’t noticed, I’ve been a little busy. I have these new treatments that make me sick as a dog. I have the Berklee classes. When do I have time?”
“That’s no excuse. What would you tell Lucy if she told you something like that?”
Lucy was able to offer her impressions on the subject as she was sitting right there, “You’d tell me to suck it up and make the time.”
I have no one to blame but myself. I created this environment. No one gets a way out. If it is worth doing, then it must be done. If you’re still breathing, there is a way.
My fascination with sports has always been a little personal. I don’t know what it is about personal achievement over team or regional preferences, but I don’t watch sports because I am pulling for my team. I know the type of dedication it takes to make it to that level. I am fascinated by that level of dedication. I know artists and musicians that have that level of dedication, but it is always fun to be distracted by the competitive angle.
I am also drawn to the underdog. Even if I have a regional team preference, let’s say the Astros, I am still pulling for the underdog, even when it is beyond impossible for the underdog to prevail. I am still happy when the Astros win, but it’s not the reason I am watching the game. I am watching post-season baseball for the anxiety attacks. I love watching pitchers having anxiety attacks. They dream their whole lives to play in the big game. Then there they are, ten million people watching them, the crowd noise deafening, and they have to control their emotions enough to get the mechanics right. Any variation in those mechanics can send the ball in an unexpected direction. With their blood flooded with adrenalin and cortisol, those variations are likely. As much as they have practiced, nothing could prepare them for this moment.
And then there is Tom Brady. I remember when he was the underdog. Now, I watch him just to hope he will lose. It’s hard to miss the big deal they are making about him these days. The Man in the Arena is the kind of docuseries you make ten years after a player retires, but he is hands down, the best football player to ever play the game. He is boring as hell to watch. He isn’t particularly accurate, or strong, or fast. He doesn’t make impossible plays. He does just enough to win. In the huddle, he looks like a MacDonald’s restaurant manager. He talks to his offensive line like they are at a corporate team building event. Sometimes, when he is calling audibles before the snap, it looks like he could be reminding everyone that tomorrow is Hawaiian shirt day. When a receiver drops a pass, he looks like he just had to apologize to a customer for that receiver failing to substitute apple slices for fries in a happy meal.
“Come on Gronk. Get your head in the game.”
But every now and then, he cracks, and it makes up for all the cool and composed two minute game winning drives I have had to suffer through. This past Sunday, I almost skipped the New Orleans versus Tampa game, but boy am I glad I didn’t. The Saints shut out Tom Brady for the first time in 255 games. Unless Brady plays until he is 55, it is unlikely that he will beat Drew Brees’ record of 304 games without a shutout.
During this loss, Tom Brady completely lost his cool; yelling at players, referees, coaches… At one point, the cameras caught him reviewing an interception on a Microsoft tablet. When he was done, he threw the tablet at a metal bench, and then he sat with a hollow faraway look on his face staring into the invisible void. I was euphoric.
On the surface, one might think that I enjoyed his suffering because I wanted to see him lose just for the sake of seeing him lose. I learned so much from watching him lose like that. Tom Brady behaved badly. He was a sore loser. He was angry with himself and everyone around him, and he took it out on everybody. It suggests that somehow he is able to make that up to the people around him, either through direct apology or through future corrections.
I always got the sense that Philip Rivers behaved that badly even when he won. It almost seemed like the offense would just let him get sacked sometimes just because he was being a dick. I am sure no one would ever admit that, but that’s what I saw.
My point is that everyone has a breaking point. When the Titanic is sinking, I would like to think that I would be one of those Victorian industrialists that, upon discovering that there weren’t enough lifeboats, decided to have a proper tea while the string quartet played nearby, but I imagine I would panic. I imagine there were other situations where those industrialists panicked and behaved badly. Perhaps when their factory workers attempted to unionize.
I like to see people behaving badly when things are going badly. I like to think that I have handled this whole cancer thing well, but I have had my moments. I certainly have had moments of complete breakdown at different points in my life. But watching Tom Brady, the greatest quarterback to ever play the game, destroy some social capital with his team over a single loss in a season that will likely end in a playoff game or a Superbowl made me feel a little better about my own shortcomings. That far away look on his face reminded me of the last couple months of thinking about my dwindling treatment options and death. I think about death all the time. I can’t stop myself. I see it everywhere, in every conversation. I have to pull myself back from the abyss every day, but it’s always right there, like the clock on the office wall during an interminable day. You don’t want to look at it, but it’s there.
It’s even harder not to look when I am getting my affairs in order: making sure the life insurance is paid up to date and the beneficiaries are updated, discussing end of life care with Yolanda and my mother if it comes to that, not refusing any request from Lucy as the holidays approach because there is a possibility that this is my last. I am not dying. I am living. But I don’t know what’s going to happen. I don’t even know if this treatment is working. It may not. Lonsurf and Avastin limits growth for two months to a year in the fifty percent of people in which it works. I have been on it for two months. In the first couple of weeks of January, we will find out if it has been working. I feel like it has been working, and my intuition has been holding up throughout treatment. Intuition requires verification. I could be wrong. We’ll see…
(Cue the picture of Tom Brady sitting on the bench in the closing minutes of his team’s loss to the Saints, staring into the abyss.)
Larry Lines is a writer (fiction, memoir, blogger), musician, and technologist living in Houston, TX. He attended Berklee College of Music in 1989. He blogs regularly at larrylines.com.