The end: what remains in the Jar:

 

Chapter 1: growing

I remember clearly the day I lost hope. July 28^th following a one-month routine MRI. I had asked my neurooncologist before not to tell me the results unless they were significantly different. That evening I received a phone call asking if I could come in for an office visit the following day. Was I having symptoms? No. Surprising. “Can you come in fasting?” He asked. He had already talked to the neurosurgeon. In less than 24 hours I should be back on the operating table to hopefully remove more cancer that had grown precipitously.

It had only been roughly 10 months since my initial glioblastoma (brain cancer) diagnosis and somewhat experimental treatment, coming half-way through my intern year of medical residency at the end of my first vacation.

After the call, I logged into the electronic medical record from my home to look at the scan myself. It looked terrible. A good half or so of the right brain was now cancer. I was shocked that there were no symptoms. Most was contiguous with the initial lesion, but one lesion sat in the right frontal lobe (part of the center for executive function among other things, but thought to grossly contribute to personality and sense of self). There was so much new tumor that it was putting a great deal of pressure on the rest of my brain. The left brain was squished to the side. A piece of the right brain called the uncus, was descending into the small space reserved for the brainstem. This is called an uncal herniation, and if often leads to profound neurological loss and death.

I barely slept. Terrified that if I fell asleep the swelling would increase and I would not wake. I knew I needed sleep. I drank two beers as an anxiolytic. I slept a few hours. I woke up. I drank some coffee. I drove myself to the neuro-oncology clinic at the Huntsman at the University of Utah. The visit starts. My parents are on the phone. We talk surgery versus medicine to reduce swelling. I want surgery. Viscerally, I want this thing out of my head. I feel betrayed by my own body. My parents understand. They agree. Sometimes I’m envious of them because they know less. They don’t know the same numbers that I know, or the pathology, or the outcomes. And I’d like to spare them that. But leading up to this moment they would comment repeatedly, “Well, you look good.” As though the exterior presentation had bearing to the relentless disease inside, or the profound emotional and spiritual fracturing it caused. Yes I looked good, because I didn’t want to stand out, because I wanted some semblance of a normal life for a bit. And making this transition from Doctor to Patient, I finally understood how and when words were used to treat ones’ self, sometimes even at the expense of the suffering.

Then I waited a while. My blood was drawn. I walked over to the pre-surgical admit section. Then I checked in with that office. I continued to wait. I touched base with some friends and family regarding the plan. I watched the Olympics and thought about how for those athletes this was probably the hardest thing they had ever done. They were training their whole lives for this small moment. Then I thought about how I had done everything right. I had been active, a long-distance runner for years. I had eaten vegetarian. I avoided most toxins. I had stayed away from alcohol for the majority of my life, as well as most other drugs and substances. One hour had passed. It all felt so unfair. Up until this point I had hoped that with so much bad news maybe the tide was going to change. Maybe the experimental treatment would lead to some miracle. Maybe somehow the universe was going to give me a second chance. On the other side of the pre-surgical waiting area, a mom carefully explains to her daughter that everything happens for a reason. What a terrible fucking lesson. Then they take me back.

On the bed, more waiting. A nurse comes and takes vitals. She gives me the gown to change into. Everything else off. After putting the gown on I go to use the bathroom. I think I’ve been drinking liters of water due to my anxiety. I hold the gown in the back as I walk, trying not to expose my naked butt to staff and other patients alike. But in doing so the gown is pushed against my front. It’s soft, I’m doing everything in power to hold back from peeing. And in all these efforts, the front of the gown becomes a point of embarrassment, semi-erect and now displaying to everyone. I feel embarrassment just writing about it all again. Maybe next time I’ll just let my backside show.

I use the bathroom, then go back to my room. A first-year neurosurgery resident comes by to consent me for the surgery. For him it’s scut work. He’s in a terrible position. He’s probably only seen a few total brain surgeries in his life. He can’t answer any of my questions—if I even had any at that point. So he comes in and describes the surgery as best he can as well as the risks and benefits. I understand medical training, as a trainee myself, but I can’t help but think repeatedly “please just stop, please just let me sign and then leave me alone.” And so eventually I signed the consent. Then the anesthesiology resident came in. Her job was to screen me for the anesthetic. No I had never had problems in the past. No I don’t drink a bunch of alcohol. No I don’t have any loose teeth. Measure my neck, examine my mouth. OK, thank you. Then she leaves. It strikes me how much busy work and how little time these residents have. How are we supposed to develop empathetic and patient-center physicians when we leave time for neither in their training? Then I remember the times previously in intern year—times that I am not proud of—where I entered a patient’s room with the explicit goal of getting out because I was tired and exhausted and borderline depressed because finishing up with that patient was the only thing standing between more work and sleep. It did get easier for a while. Of course, circumstances are grossly different now.

Eventually my friend from medical school, Elizabeth, shows up in my room. She had told me earlier that day that she was flying out. Initially I was surprised, but delighted. She was just in time for my neurosurgeon to come in, Dr. Menacho. She described her plan to go in through the same way from my previous surgery, the right occipital approach. She thought she could remove most except an isolated area in my right frontal lobe. I asked if she expected any new neurological deficits following surgery. No, maybe just a bit more of the left field cut I already had. I thought about asking about infection risk. Usually repeat craniotomies carry a higher infection risk. But then I decided that I didn’t want to know. Then the anesthesiology team came in. It was the same team from before. I joked with them a bit; something to lighten the mood a little. They said they would honor my requests: arterial line in and out while still asleep. The last one had been exquisitely painful, but a necessity to monitor blood pressure during surgery. And foley catheter (placed in the urethra to collect urine from the bladder) placed and removed while still asleep. Elizabeth had been impressed with the bedside manner of both teams. I was as well. It was just easy.

              Then they started some sleeping drugs and I began being wheeled off. Several hours later I woke in the neuro critical care unit. My head was, unsurprisingly, aching and throbbing. I reached a hand back to feel for the scar. I saw the bruise from the arterial line in my wrist, and was surprised to find it didn’t hurt. I did however feel rather exquisite penile pain—most likely from the Foley catheter. I needed to pee at the same time. I looked down to make sure the catheter was out. I got a urinal. It burned when I peed.

In my right arm were two peripheral IVs, one in the left. The most distal on the right was running maintenance fluids—basically fluids ran at a slow rate to keep the patient theoretically hydrated while they could not eat or drink. Occasionally the blood pressure cuff would run on my right arm, causing significant pain at the sites of my IVs, likely because of the fluid pressure build-up. Elizabeth came back with McDonald’s and I began to eat and drink. I had an post-operative brain MRI. Some other co-residents came by. We played board games, a welcome distraction. All the while I continued to eat and drink while getting regular narcotics for pain. Then I was told that based on the MRI the majority of tumor had been removed, but there was a section next to my basal ganglia (important in initiating and controlling motion) as well as the persistent right frontal lesion. Then it was Elizabeth and me. We watched a movie. Then she advocated on my behalf for some anxiolytics so that I could finally sleep. I thought about how difficult it must be for the average patient to feel cared for in the hospital, or to feel that their needs were met. Here I was, an actual physician, and I didn’t think for a moment I would have been able to do it on my own. Then I had Elizabeth disconnect the maintenance fluids—seeing as I was eating and drinking plenty—because the nurse stated she couldn’t stop them. I told the nurse that I disconnected them and if she could ask the surgical team to discontinue the order, which they did.

The night dragged on. Elizabeth left. Unable to sleep I began writing elements of a will on my phone. Who should have my stuff, what my wishes were in death, and when to give up on life. I had called the nurse several times hoping for something to help with sleep. I felt trapped in a spiral. For a while, nothing, but she did tell me not to be thinking of those things or writing them down. As though the act of writing was causing anxiety and insomnia. I was shocked that an ICU nurse would be so brazen. Then I got my next dose of pain medications. I wasn’t in pain, but the somnolence was a welcomed side effect. Eventually I fell into a fitful sleep. The next morning was more of the same. And the next day I went home. My parents were visiting along with some additional friends: Sarah, Ben, Ariana.