Day: February 17, 2015

Guest Blogger, Dylan Eekhoff: A Burst of Air

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“Let me know if there’s anything I can do for you.”
I’d like to try to address this statement, seeing as I’ve been hearing it often since my diagnosis. I appreciate the overwhelming support I’ve been receiving, I really do. I just don’t like this statement. Although sympathy and attention are both pleasant to receive, I feel like I might be getting too much.

Here’s why: I’m probably not going to die. I say probably because spontaneous human combustion, although not overwhelmingly so, is a possibility. Google spontaneous human combustion. Unlike spontaneous human combustion, the kind of cancer I have is treatable. I feel like there are a million other people on this earth who deserve the prayers and kind words rather than me simply because there are a million other people who have been diagnosed with worse.

I’ll try to keep the butthurt bellyaching to a minimum from this point forward.

I don’t really know what to write now. I’m sure everyone has questions, none of which are stupid or unanswerable, but I don’t really know what to say. So, I guess I’ll start with what it was like to be diagnosed with cancer as a 20 year old whose outlook on life was finally looking hopeful. Initially, my diagnosis was the source of a lot of negative energy. I didn’t feel like my life was over, but I felt this overwhelming anger that sent me into somewhat of an episode of depersonalization/derealization. There was a lot of denial and self-loathing in the first week, a lot of wishing, and a lot of pain. I think I went a week without laughing or enjoying anything. It was also a week before I could really appreciate the support and kindness that was being sent my way via social media and prayers. I’m not a particularly religious person, but I do believe there’s some space magic afoot after I held hands and prayed with one of the hospital’s chaplains.

I want to be able to honestly say that I’m feeling great as of now. I want to say I’m feeling like a million bucks, but a more realistic appraisal would be somewhere in the range of $100,000-$250,000, depending on the day. I’ve accepted that the next few years of my life will be spent cautiously. I’ve accepted a lot of things. My sense of humor is gaining traction. I can get in and out of bed without assistance. I’m not constantly in pain. My only complaint is that my brain feels as if it is operating at less than half of what it’s capable of. It’s taken me more than a day to type this up, not just because I don’t know what to say, but because it takes an insane amount of effort to stay focused. What I’m experiencing is known as “post-chemotherapy cognitive impairment.” My fine motor skills I’ve developed have decayed quite a bit, resulting in a low typing speed, which is only made worse by the fact that I sometimes forget what I’m thinking as I’m typing. My vocabulary isn’t what it used to be. Multitasking is impossible. I do, however, have a good feeling about this. I don’t want to jump the gun and say I’m kicking ass and taking names here, but as of now, I feel like I’m back in control and getting through this is not a matter of, “if,” but, “when.”

Segueing has never been my forte, so I’m just going to jump into something else without reason. I was playing at my friend’s house one day when I first experienced what it was like to be convinced that I was going to die. I might have been in 1st or 2nd grade. I was over at Kevin Beese’s house playing on what could be the most magnificent buoy swing ever created. Now, I realize that the seeming immensity of this buoy swing was relative to my size at the time, and I might be disappointed if I were to revisit it, but I can see it in my mind’s eye with perfect clarity: a bright orange boat buoy suspended on a tree branch maybe fifty feet off the ground, then a thirty foot hill behind with tire steps to the top, and below all this was a large clearing with a little shrubbery and a blackberry bush in the middle. We would take turns jumping onto the buoy from near the top of the hill, swinging dangerously high back and forth from the hill to the clearing. One of us had a genius idea to not sit on the buoy as we swung, but to hold on for dear life while our feet dangled. We referred to this as “Supermanning,”I believe. Most of our Superman launches went without a hitch, until the one time I lost my grip above the clearing. I have no idea how far I fell, but I remember landing on my back on the edge of the blackberry bush. This knocked me unconscious for a few seconds, and when I came to, I couldn’t breathe. I had no control over my body, and as I impatiently waited for my lungs to begin functioning again, I was fairly certain that I would die right there in the blackberry bush. Of course, I didn’t, and as Kevin stood over me and asked if I was okay, I regained control and a burst of air shot into my lungs.

This, coincidentally, was what it was like to be told I have cancer. When I received my diagnosis, I went back to the blackberry bush, laying motionless with no feeling in my extremities, feeling as if a 500 pound weight was lying on my chest. I’m not sure exactly when, but sometime recently, I heard Kevin ask me if I was okay while a burst of air shot into my lungs.

Let’s Talk About Guilt

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The weather in Seattle for the past two days? Clear skies, close to 60 degrees, the days are starting earlier and ending later, spring is in the air. This is not normal and for two days I have had the chance to get out of the hospital and walk around in the sunshine. I have eaten well, wandered around my favorite Seattle bookstore, and enjoyed being in the center of one of my favorite Seattle neighborhoods. During these two days Dylan has had a headache that has ranged between a 4-8 on the “rank your pain between 1-10” game he gets to play with the nurses each day. He has tried a variety of pain meds, but nothing seems to hit the spot. He’s tried laying flat, sitting upright, sitting in a chair, walking, and anything else that might shift his pain level down a few places, but nothing has worked. This morning at his daily weigh in he came in at 194, 33 pounds in four days, that can’t be good. He is eating, but he has dark circles under his eyes and his face has a lean skeletal look. He joked this morning that he is going to start a weight loss website with before and after pictures, “You too can lose this much weight, you just have to get cancer.”

The past two nights I have slept without waking up every hour to guide Dylan to the bathroom, he is still getting up to go every hour, but now he doesn’t need any assistance. How do I feel about all of this? Guilty. The guilt hit me hardest yesterday after Dylan said he wanted me to turn off the lights, turn on his iPod, and leave for two hours. He wanted to sleep and in order for that to happen I needed to leave. It was near dinner time, so I figured I would slip out and visit my favorite establishment a few blocks away: Rhine Haus (previously known as Von Trapps). Rhine Haus is a German beer hall with brats, kraut, and indoor bocce ball courts. I turned all the room lights off, massaged Dylan’s feet for a little bit, and then walked the two blocks to Rhine Haus which was closed for an employee party. I moved to plan B, which meant walking another two blocks in the sunshine to Elysian’s pub. (Elysian is a microbrewery that was recently purchased by Budweiser.) It is the type of pub where a beard like mine looks pretty normal. I got the worst seat in the house, behind a wooden pillar at the bar and ordered a beer, hot wings and poutine.

The Happy Hour crew was an odd collection of solo males, guys with nothing better to do on a sunny day in Seattle except save two dollars on a beer. One guy, sitting a few dudes away from me caught my attention and as I got closer and closer to finishing my beer I thought about leaning over and asking, “Are you really reading that book?” He had Italio Calvino’s novel Invisible Cities sitting next to his beer. I have read a few of Calvino’s works and they are mind blowing and frustrating. They are also the type of novel someone might pretend to read if they wanted to look like a smarty pants. This guy also had a journal type notebook which he was writing in and from where I was sitting looked like a collection of writing and doodles. I mind my own business most of the time, but this guy was really pushing his luck. Then he started to do something even more strange, he started using his Sarah Palin notebook (his hand) to jot down a few things. That was the tipping point, if you have a notepad with real paper, why are you writing on your hand? To draw attention to yourself. Yep, anyone who is a pretend writer (like me) knows that going someplace public and writing is self-indulgent. The real hope is that a famous literary agent walks by and sees you hard at work and asks, “Are you writing the next great American novel?” I’m sure this happens all the time at the Elysian pub in Seattle, but writing on your hand is for amateurs. Real pretend writers write on scraps of paper, or they have EverNote on their iPhones like me. I didn’t take the bait, I wasn’t going to ask this knucklehead about Calvino. I wasn’t going to ask, “Whatcha writin’ on yer hand there big fella?” I wasn’t going to talk to him at all. Instead I got out my iPhone and made a note about pretend writers into my EverNote app and then I paid my bill and left.

When I got back to the hospital Dylan was still not sleeping and uncomfortable. He wanted to listen to Schubert’s Rosamundi Overture while I massaged his temples and feet. He closed his eyes and relaxed. I thought he was sleeping, but he wasn’t. I read the Wilfred Owen poem Anthem for Doomed Youth and Frost’s Nothing Gold Can Stay, and we talked a little bit about our feelings of optimism and staying gold. These conversations would never have happened without cancer. If death had not peeked into our lives and ripped away everything distracting and unimportant these moments would not have happened. We tried on last time to bring on sleep.

What does a dad think about while massaging his 20 year-old son’s forehead and feet? About guilt. About being nearly 50 and never facing death in a real way. About enjoying a beer while your son is suffering. About beautiful days and their cruelty.

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