3/27/15: I sit here watching Stephanie doing the morning blood draw. It is just a little before 5 am and Dylan doesn’t even really wake up, he rolls over when Stephanie comes in so she can access his port. He automatically raises his left arm so she can put the blood pressure cuff on his arm and holds up an index finger for the heart-rate sensor, it is a dance that is so automatic now he stays asleep through it. When she leaves with his blood and vitals Dylan is already back into the deep sleep of exhaustion.
These routines have become the Lethe waters of forgetfulness, these routines have numbed me to the point that I forget to be terrified, or even afraid. There are times when all of this feels normal, when I look forward to waking up, making a cup of coffee, and sitting here in the dark listening to Radiohead on my iPod and writing.
We have been through it all, there isn’t an unknown treatment on the horizon, and this round went so smoothly that yesterday as Dylan and I waited in the surgery intake room–a crowded room that is generally noisy and unpleasant–for his third or fourth spinal shot, I was surprised that Dylan was getting teary-eyed. I had been more concerned about the poor timing of the operation, the NCAA sweet sixteen had just tipped off and now I was downstairs with no way to see the games.
Dylan was frightened, which is the normal reaction for someone who is about to have his spinal column accessed with a big needle and shot full of a poisonous chemo drug, but I was somewhere else, I was upstairs thinking about the West Virginia and Kentucky basketball game. Dylan asked me if I had a “happy place,” a place in my mind I retreat to when things are tough. I didn’t. I asked him about his place. He couldn’t talk about it and tears began leaking out of his eyes. I did my best to talk about a few of my favorite places, but my emotions started to crawl out of my happy place and into my eyes also. When the intake nurse came over to see how Dylan was doing she was probably a little surprised to find us pretending not to cry behind the thin curtain. When she asked if there was anything she could do, Dylan requested drugs like he was Pablo Escobar, “I want —— and ——.” (I don’t remember what the drugs were, but Dylan has become a great self-advocator in our time in the hospital.) The nurse left and came back a few minutes later with two syringes and five minutes later Dylan was talking long and slow like Tommy Chong had taken over his body.
When the operating room became available, I asked Dylan whether he wanted me to wait downstairs or back in the room. He didn’t care, the drugs he ordered didn’t care either, so I told him I would wait in the room so I could watch the game. I found my way up to the room and turned on the game, West Virginia was already so far behind it wasn’t worth watching and this gave me the perfect opportunity to reflect on how stupid I am. (I may not have a happy place, but I certainly do have a sad place where I can mentally flog myself for being an idiot.)
When Dylan was wheeled into the room I helped him into his bed and elevated his legs on the hospital bed, we had been told to keep him in a horizontal position for four hours after each spinal shot to avoid headaches. The fear of the spinal shot had worn off and we spent a little time talking about his happy place now that he was past the emotion of the moment. He told me about his place, Dylan said he is not alone in this place, but with a good friend (Gabe) who has been a guardian angel in Dylan’s life. As he told me about this place I was wrapped up in the serendipity of many of the recent events in our lives. I don’t know too many people named Gabe, but one of the first people we met while walking the 12th floor was a 28 year-old guy who had the same form of cancer Dylan had, his name was Gabe. Gabe was just finishing his third round of treatment and talked to Dylan about what to expect as he went through chemotherapy. As Dylan described his happy place and how his good friend Gabe has been there both physically and cognitively throughout difficult parts of his life, I was thankful for the good fortune life has provided to prepare us for this time.
Dylan was still a bit tired and a little dopey from his drugs and wanted to rest, so I got him his iPod and headphones and he zoned out. My wife arrived for the beginning of her Spring Break and since Dylan was zonked out we ventured out to get a bite to eat with the promise we would return with food for Dylan. (He has moved into the “I won’t eat cafeteria food unless they make me” phase of his hospital life.)
I picked a place to eat dinner where I could watch the basketball game because I have a basketball addiction this time of year; I am willing to admit it, but I don’t want to be cured. The pub was full of people and we found an empty table next to the only three people in the pub not watching the game. Instead of watching the game the trio spent their time talking about how stupid basketball was and then arguing about which Christian Bale movie was his finest. The basketball hating was one thing, you don’t have to like basketball, there is no law stating you have to like basketball, but if your bill is paid and you are done eating and drinking…you could leave. The worst part of listening (the pub was loud and the trio was yelling so they could hear each other so I really wasn’t eavesdropping) to the Christian Bale discussion was that all they talked about were the Batman movies. They didn’t talk about American Psycho. They didn’t talk about The Fighter. They didn’t talk about American Hustle…and they never mentioned The Machinist (his best work). When my bill arrived, I paid it and left immediately even though the basketball games were not over so I could escape the next conversation which would probably be something like greatest Michael Jackson songs. (Ben or ABC, for the record. Yes, his songs while he was in the Jackson 5 count.)
After leaving the pub we walked over to Dylan’s favorite sandwich shop, picked up a big sandwich and headed back to the room. Dylan was sleeping but woke up and was hungry. He still couldn’t sit up, so we draped a towel over his chest and let him make a big mess while he ate his sub. Seeing him eat without discomfort is always heartening.
We knew if his blood samples were good we would all get to go home in the morning. Joanna said she would drop by first thing and let us know how everything looked, so we went to sleep that night hopeful that we would be sleeping in our own beds the next night.
Around 9:30 AM, Joanna came in and said everything looked good. We should head home. We would have to be back on Friday for another spinal shot and check-up but Joanna left us to pack up and hit the road. Driving home gave me a chance to think about my happy place. Before all of this cancer stuff, my happy place probably would have been a beach in New Zealand, or a mountain lake, but these days my happy place is the moment I crack open the door to my son’s bedroom and see him sleeping comfortably in his bed. That is my happiest place.
Categories: The Longest Journey