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.