Chemotherapy is like an MMA fight. The rounds are filled with savage violent body damage. The breaks between rounds are short and the dread that the bell will ring to start the next round hangs in the air, but as you get closer to the next round you realize the end is getting closer and closer.
Dylan and I have been home for nearly a week and have fallen into a lazy routine. There are daily blood draws at the local cancer clinic, phone calls about platelets and blood cells, and a lot of waiting. I have begun digging into the stack of bills from various hospitals, doctors, ambulance companies, and notifications from our insurance company. The financial aspect of this journey is something that will take some time to work through and I know it will all be okay, but the paperwork associated with medicine in the United States is something only an accountant would get excited about. I began putting all the bills in a folder between round one and two of chemo; it looks like I am going to need a second folder. I spent 30 minutes on the phone with the insurance company before they told me they couldn’t talk to me because Dylan was 20 and had to fill out a form before they gave me any more information. We are not destitute, and both my wife and I are college graduates, but the financial side of American medicine seems designed to confuse people. (Yes, I am a Socialist.)
Yesterday, after four phone calls, we ended up doing Dylan’s blood draw at the medical center instead of the cancer clinic. Dylan doesn’t like to use his chest port to do blood draws because it takes longer and feels funny, so instead of setting up an appointment at the cancer clinic we were told to drop in when we wanted to the medical center because they do blood draws from people’s arms all day long. I don’t know if we ended up there at a particularly busy time, or if the Sequim Medical Center is the Time’s Square for old people who don’t know to cover their mouths when coughing, but the waiting room was full of old people who either had Tuberculosis or hadn’t seen any of the recent movies about pandemics. Dylan had on a medical mask because he is still susceptible to germs but the sick people in the waiting room didn’t seem to understand that when you cough into your hand and then touch things, like for instance, A PEN EVERYONE HAS TO USE TO SIGN IN you are spreading germs. Hey lady with the TB cough, see that bottle of hand sanitizer? That’s for you. See those masks? If you are coughing, put one on!
I snuck peeks at Dylan as we waited, and each time I looked, he was adjusting his mask to make sure there was no way for any germy air to sneak around it. It might seem like a minor issue, but when someone is neutropenic, germs become something more than an abstract threat.
Eventually, the blood was drawn and sent somewhere. Where the blood went, or what the results were is still a mystery because no one called to follow-up, and none of my calls were returned. (I assume if it was bad news someone would be on the phone immediately, but at this point I don’t know if his blood ended up with the right people. Dylan told me not to cause a stink because he felt fine.) Dylan and I spent the short drive home unpacking our anger at people who spread germs. He offered the excuse that it could be a generational thing (he was defending our community’s elderly folks), but I said there was no excuse. To be honest, I have become less and less tolerant of the large number of retired people who move to Sequim to live and vote against school bonds.
Later in the day, I ran to Safeway to get some supplies for dinner. As I was doing the self-check-out thing, I heard a lady behind me asking, “Are you okay?” I turned around and saw an elderly man in some distress. He had one knee on the ground, one leg sprawled out behind him, and was hanging onto his cart to keep himself from falling. His sheepskin slippers were coming off his feet and he was trying to lift himself into a standing position. A Safeway employee was trying to help him to his feet, but he was a big guy and she was a small lady. I left my groceries, went over to the old man, and asked if he needed help. He looked directly into my eyes and said, “I have Parkinson’s.” His thick glasses gave his eyes a googly, loose affect and he looked truly lost. His body and mind had betrayed him and now he was splayed out in the middle of Safeway as alone as a person can be while surrounded by people. Once we got the man to his feet, he said, “I’m okay now,” but I was still holding him up and could feel his legs weren’t supporting his weight. I knew what this man was thinking. He didn’t want help. He wanted to be strong. Asking for help is a sign of weakness. Even before Dylan’s illness, I was someone who would help people who looked like they were having difficulty, but I did so without much empathy, like ripping off a Band-Aid. Quick and done, but I couldn’t leave this old man. He said he didn’t want a chair, but we got him one anyway. He said he was okay, but he Safeway employee went and got him a motorized shopping scooter and I waited with him. I helped him into the scooter and he said, “I don’t know how to use this.” The Safeway employee gave him a quick lesson on how to use the scooter and I went back to my groceries. I couldn’t shake the image of his eyes from my head, like two blue doll’s eyes rolling around without focus. The distant, glazed look of someone looking for a familiar face and finding no one but strangers. His attempt to maintain the dignity of autonomy took him to this place, this place where he was no longer capable of doing a simple thing without help.
By the time I got out to my car, I was already thinking about how resistant we are to asking for help. We want to stand on our own feet. We want to be strong. There is probably some scientific/psychological reason behind it all that can be traced back to our tribal roots where weakness led to being kicked out of the herd, but I am finding there is a strength in weakness. Vulnerability isn’t valued in our culture, but maybe it should be. I’m not talking about the type of vulnerability that causes people to update their Facebook status to “Random, obscure, statement, looking for attention,” but the type of openness that allows us to say, “I need help, be kind to me.”
I was also having an interesting internal conflict about wanting to punch the old lady who was coughing near my son earlier in the day. The line between self-preservation and empathy is thin, but it wouldn’t hurt to put on a damn mask and use some hand sanitizer anyway.
Categories: The Longest Journey