If you’re hoping for funny, anecdotal stories about being a medical examiner- this is not the post for you.
It’s a blur, an unpleasant one.
Cancer has a very good publicity manager and amazing media representation. It’s all robust women in pink shirts, walking somewhere together while people cheer and throw money.
Grandmas and Grandpas sitting in atriums…. lots of potted plants and windows everywhere. They’re beaming and talking about a miraculous recovery. Their cancer that looks about as uncomfortable as indigestion, or a sales call during dinner- as they hold each other and stare into a sunset, some guy with a voice like warm butterscotch utters a single syllable: “Love” or “Hope” or … “Fuck”
It’s all earth-toned and peacefully happy, photos of bald people smiling gratefully up at inspirational quotes
Or standing with their arms out like they’re waiting for a great big fucking hug from God.
I was just confused… the same kind of confused I would imagine one feels when they wake up to find their lover standing over them with a knife… It’s some strange betrayal that transpires under the skin- your cells passing along dirty secrets in the dark, tucked between the blankets of flesh… naughty and scared but none of them want to stop.
all this time- I remember thinking- my own body was cheating on me. Something was brewing- a plan was being made somewhere deep and hidden.
I was confused when they told me I had cancer, I’m still confused.
Picking up where my 9th radiation treatment left off and plowing clear through to where I am now:
First of all, I ended up with a pig drawn on my shoulder one day, and there was a porcupine in there somewhere… all scrawled on my chest and shoulders by the radiation oncology staff. The lower half of my face turned a bright vermillion and my nose began to feel like a hollowed out cave in the middle of a desert. Then there was the mess of side effects that all crowded in like greedy children begging for candy. I developed the oozing radiation burn on my throat that extended inward to my vocal cords and I developed what my friends referred to as my “jazz singer voice”. My doctor decided to cut short my treatments because at 11 sessions, I was showing the symptoms you would expect to see after 16 sessions. He told me that my salivary glands could shut down forever and we may have damaged my thyroid. They put me on straight oxycodone for pain- the real thing, powdered narcotics in capsules, not that crap they mix with Tylenol and pound into tablets. I spent about a week and a half as high as a kite and went on to one of those websites where you can design your own t-shirts and stickers and they’ll print it all up and send them to you… drug induced stickers arrived at our house this week- lots of them.
But perhaps the most difficult part was the sense of hopelessness and ennui, the question of what the hell was I doing with my life. I had a horrible feeling of resentment toward my friends who were all pregnant and getting new jobs and doing fascinating, exciting things while I was sitting at home watching my face change colors and wondering if pre-natal vitamins would make everything get better, faster.
The fact is, cancer is confusing and terrifying. We like to think that modern medicine has everything under control… they try to convey that image with all of their mauve commercials. But they don’t have everything under control. Most of the time, I got the distinct impression that my radiation oncologist was just as baffled as I was by some of the effects that radiation was having on my body. Moreover, he wasn’t entirely sure how this whole endeavor was going to turn out, either. I would come to my follow-up appointments and he would take a look at me and say with some hesitation, “So… how do YOU think you’re doing?”
You see, not all cancers are tumors and chemo and “remission”. Overt cancers like that are pretty straightforward. My cancer is unpleasantly rare and maddeningly permanent, it will probably be with me until I die. “Cancer” is really just the abnormal reproduction and proliferation of cells… unhealthy cells that do ugly things. My cancer is a type of lymphoma that lives in my skin and causes dis-figuring rashes. It may become systemic if it’s left to its own devices. If we wanted to try to get rid of it completely, we would have to radiate my entire body, head to toe. The goal here was more or less to beat my cancer back by radiating the areas where it has been the most active- namely, my face, neck and chest. It’s not “gone”… just caged… for the moment…. hopefully. In five to ten years it may decide to become troublesome again and I’ll have to go through this lovely process all over again… if radiation worked at taming my disease process at all in the first place- because it’s too soon to tell.
Now, people ask me how I’m doing. They want to know if I’m “clear” and I don’t really know what to say. No, I’m not clear, but that wasn’t exactly the goal to begin with. It was a hope, but a distant one. I guess now, I’m just wondering what to do with my life. This is all very… significant… right? I don’t know. My focus has been to just hurry up and become functional again so I could go back to work. I don’t think I ever really thought about my cancer much- what it meant, how I’m reacting, how other people are reacting… it was just a series of sensations- “Wow, this sucks.” “Wow, I’m really uncomfortable.” “Wow, I look awful.”
Now, I’m sitting here, thinking… What was all that? What did I just go through? Why did I do it? What happens now? Should I feel a renewed sense of purpose? Should I be invigorated? What should I do now? Should I have a baby? Do we buy a house? Should I take that trip to Japan? Should I take more time off from work? How do I feel about my friends and family and how THEY responded to this? How old am I? What does that mean? What needs to change? What CAN I change? What are my responsibilities and what ARE NOT my responsibilities? What do I want now? For what can I, realistically, hope?
More than anything I’m just kind of left with… nothing. I’m not going to get any great big, neon sign test result that says “YOU’RE IN THE CLEAR!” I don’t feel affirmed or saved. I feel exhausted and rushed- like now I have to hurry up and figure out what the rest of my life is going to look like now that I’ve done, “The Big C” and life is, reportedly, so short.
I don’t know. I’m tired… and all I can say with any confidence is I’m pretty sure I want more out of this life than Netflix and air conditioning.
I guess that’s a start.