- Diseases, Disorders & Conditions
The P Word, or: Cancer Center Epiphanies
I'm learning, constantly, even in the cancer center.
My day at the cancer center began the night before as I stared at my laptop with bleary eyes into the wee hours of the morning. I’d told my mom weeks ago that I was willing to go to the cancer center with my dad for two days of his monthly infusions. He doesn’t have the big C, but in some ways I think that might be a better disease to have because then there’s a tried and true course of treatment for it. He has Polymyositis, a big P word, and perhaps the biggest in a long list of words I don’t like that start with P. I’ll name a few more: Politics. Polygamy. Poop. Pretentious. Porcupine. A lot of really crappy things start with the letter P, if you think about it.
So, last night, I stared at one of my favorite blog sites, scrolling mindlessly and avoiding going to sleep, because tomorrow can’t come if you never go to sleep, right? So, so wrong. I’m a strange human because I often willingly lose sleep in order to participate in things I believe are life enriching experiences; Skyping with my boyfriend when he’s far away, watching a few episodes of my favorite tv shows on Hulu, reading a really good book (lately Sacré Bleu by Christopher Moore stole many hours of precious sleep from me and I don’t regret a single hour), and a few other activities come to mind. As a member of the 1/3 of Americans who have Anxiety, I am often kept awake by paranoia that something may or may not occur in the future, doesn’t matter what those things are.
There’s a big, fat, ugly P word: paranoia. Paranoia that my car is going to suddenly break apart into little pieces in the middle of the road, just as I’m preparing to move myself to California. Paranoia, that my computer screen is going to completely snap off before I get a chance to finish the bestselling children’s book I’m frantically trying to write and edit to masterpiece status by an October 1st contest deadline. Paranoia, that my dad will develop a new illness, or this one will get worse, or that it will become a C word, or that the insurance company will suddenly decide that no medicine licensed by the FDA is actually legal anymore and rescind any and all money they’ve shelled out for this very expensive man that my father has become. We lost a suit with the insurance company over a medicine that he was given two rounds ago because it’s not FDA approved to treat his P-word disease, so my dad is a $66,000 man. Well, more than that when you consider the money we haven’t paid, thanks to really great doctors and a few treatments that at least keep him from declining, like this one we’re getting today.
I say “we” as if I’m hooked up to the machine too, and I kind of am. I’m in this family machine that has a large problem with it’s engine and is dripping oil, dropping parts along the road, and has a flat tire, but it’s still driving, because by God, we are going to make it to our destination. Whoever said that the destination doesn’t matter in the great journey of life has never dealt with serious illness. Eff the journey, because the journey for us has meant a very sudden and mysterious P word that has taken my middle-aged father from a sprightly drama teacher to a trembling, grey-and-white-haired, meek man. He has always been an advocate for peace, but he’s not really a pacifist in every aspect of his life. He has fought this illness with everything he’s got, and even with strength pulled from the cosmos.
If I ever hear someone say that religion makes you weak, I’ll punch them right in the gob. You don’t have to like it, practice it, or agree with it, but God has held my father up and kept him going. My brother once said to me (he’s a zen agnostic of sorts) that he lost his faith because he couldn’t justify how a loving God could let something like this happen to the godliest of men, and I see why he feels that way, but at the same time, I just can’t feel that way. I don’t want to believe that God has his hands in everybody’s salad, pouring on honey mustard when I want balsamic vinegar. He didn’t will this illness on my Dad, but at the same time he can’t swoop in with his super cape and fix everything. If he did, how would we even know how to solve our own problems as human beings? We wouldn’t have any sense of resiliency! We couldn’t cope with small hardships. So, yes, I see what my brother meant, but I can’t believe it.
Here’s another word I hate: Port. I don’t hate it for the ship/harbor connotation; I hate it for the big C connotation. There is a beautiful woman sitting across from me at the cancer center who has a chemotherapy port in her chest. She’s not beautiful because she is physically pretty, because that qualifier doesn’t even register with me as I look at her. She sits with a pretty scarf around her head; it looks like one my grandma gave me, or more accurately, one I took from a bin in her guest room that I knew she wouldn’t miss. A silk scarf, from the time when women wore silk scarves un-ironically. This beautiful woman also wears a quilt on her lap because it’s like the arctic in here and I think she made it, or somebody made it for her. Either way, it was made with love and I know that because she brought it with her here, where she is completely vulnerable. She is clothed in love, and she has a stunning smile. The fact that she can smile, that her body is still willing to after all of this, that is her beauty. Several nurses and visitors have come by to visit her (because Chemotherapy takes forever) and she speaks very positively and her laughter fills the room.
Illness is in no way enviable or pretty or enjoyable as life experiences go and I hate this rose-colored-glasses point of view that has developed in our consciousness that everything is sunshine and roses because we’re meant to learn something about the absolute supreme beauty of life from this person who is being poisoned to death in order to live. I stole this partially from the author John Green, who explained why he wrote his book Looking For Alaska as a less than beautiful view of a girl dying of cancer. I don’t know why we have to justify that these horrible sicknesses take over people; the fact that they do seems reason enough to be grateful for our own good fortunes. But dying isn’t pretty, no matter how many artists paint Ophelia’s drowning as some profound portrait of a lovely woman with flowing hair and a porcelain complexion. If death were a person, it would not be a beautiful young woman in old clothing. Or if it was, it would be a deceptive beauty, like a scarf-ed woman with a port in her chest and poison running through her veins.
I don’t know when this woman will die, but I have no doubt she will because immortality has not yet been powdered for pills and they can’t inject it in through her IV. But whether she dies tonight, next week, or in a hundred years, she will die. And so will I, and so will you. Our job as humans, perhaps our purpose for living, the meaning of life if you will, is to hinder death a little while. Some people stave off death by travelling the world with just the clothes on their back and looking for themselves in statues of religious idols or on the tops of mountains. Some people create artistic masterpieces so that they can leave a piece of themselves behind when death does come knocking. Some people just sit on their couches and watch reruns of bad television. At least then they aren’t seeing their own demise. That’s where the cancer center is a strange and nearly grotesque bridge between living and dying. These people sit here, hooked up to beeping machines and tubes with glossy liquid, with feathers for hair and ports that ships sail into carrying poisonous cargo. They see Death. They face it. I think that the people who beat their serious illnesses have probably shaken Death’s hand and said: “No soliciting, we’re not interested in what you’re selling. Come back when you’ve got a more premium package.”
Sometimes the patients here cry and I think they are brave to cry in this place where Death comes, selling shiny knife sets. I want to cry for them, or punch Death’s lights out. But I can’t see him, or her, or it, because I’m not hooked up to the machine that lets you see Death when it comes calling. In a small way, I almost feel like these people are lucky to have this super power. People who get shot or hit by cars don’t have the luxury of fighting death off, but these people do. Even if they lose the fight, they used their powers to see right through Death. They see the bastard for what he is and they aren’t drawn in by his charms, promising no more pain.
My dad is one such superhero. He is so super, he can fight off death even when he’s asleep because of the highly concentrated dose of Benadryl they’re dripping into his veins. Sitting next to him, I’m not a superhero. You would think that the healthy people who come in here with the patients are the strong ones; it’s the other way around. I’m here to be strengthened by my super father, to watch him look Death in the eye and say: “Hit the road, Jack!”
I once felt like my mom ought to show her grief over my dad’s illness more because I’ve just never seen her upset about it, but I think I did her a disservice. She comes with him almost every time, for her own dose of strength. It takes the full five hours for her to charge up again and when she leaves, my dad has managed to make her almost as strong as he is. Even anchors need the weight of their purpose to keep them in place, and however weighty my dad’s illness is for my mom, I think that it makes her even more able to be the family rock. I can’t imagine that she could hold our family together the way she does if she wasn’t also vulnerable.
My stomach grumbles. Oh, right. In spite of the hurt in this place, life still goes on. I’m about to wake my dad up for lunch, which my mom packed this morning before going off to win bread and make bacon. And I’m writing this because if I wasn’t occupying my brain, I might just break down and cry over all the things I can’t control, and all the stupid P words that seem to want to run my life. But that maybe isn’t such a bad thing. I think my parents were really worried how I would handle coming here with him, but quite honestly, I can think of a few worse ways to handle it than putting my feelings into words and getting them out of my body. I could run through the hospital, sobbing and screaming like a mad woman. Or, I could write. So I write. My dad sleeps, sees Death and staves him off, and I write, and we live.