Category: The Longest Journey

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.

Where We’ve Been

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Today, makes two weeks in Swedish Hospital in Seattle, it seems longer. I know all the nurses by first name, I know when blood draws are, I know that Dylan’s once distended belly hasn’t grown noticeable, and I know he feels better, but I also know the cancer fighting has just begun. Yesterday, before Dylan and I had our Bro-Down, we spent some time talking about what beating cancer might look like. We talked a little about five-year survival rates and the future of cancer treatments, about what “cancer free” really means, and about the really scary prospect that all this progress is just a tiny step.

When we started chemo, Dylan needed help standing when getting out of bed, today he stands on his own and needs hardly any help getting up at night to empty his bladder for the five bazzillionth time. He discusses his treatments with his nurses and decides which pain killers and sedatives work best for him. He spent thirty minutes talking to Nicole about what cancer is and how it works. Things are better, but…but…but…

Yesterday, we knew Dylan would be starting a new chemo treatment and everyone indicated it shouldn’t be too much of a problem. He might get a headache, he certainly would pee a new shade of yellow (day-go), and depending on how he reacted, we could get a few days to spend outside of the hospital. Our plan was a simple one, all dude stuff all day.

We kicked off DudeFest 2015 by watching the NBA skills contests on my iPad. I recorded the event on my DVR in Sequim and through the interwebs I could contact my DVR and watch it on my iPad. I grew up holding a television antenna to improve the picture and turning a knob to change the channel, so sitting in a hospital room in Seattle and watching something on my DVR two hours away took a little getting used to. We laughed, cheered, and it all felt pretty normal except Dylan had to go to the bathroom every 15 minutes because they were pumping him full of bicarbonate to get the ph level in his pee to reach seven before starting chemo. (I don’t know what any of that last sentence means, but that is what they were doing.) After the dunk contest, Dylan hit the magic ph pee number and Nicole came in with the chemoimage

There is an odd ritual that takes place with each chemo treatment. The lead nurse arrives with the chemo drugs in a sealed in yellow bag. The lead nurse then puts on a Tyvek gown and opens the bag. A second nurse comes in and they read the labels on the patient’s arm and match it up with the chemo drug. I suppose this helps prevent mistakes. Then the bags of chemo drugs are hung on the tower and we go back to doing whatever we were doing. Every 15 minutes, Dylan’s vitals are checked and everything seems pretty normal, other than the fact that Dylan’s blood is being filled with deadly chemicals…another day in room 1266.

After this treatment, Dylan and I did a few laps around the ward and snuck into a couple empty rooms to compare their view versus our view. Some of the rooms have a pretty righteous view of the entire Cascade Mountain Range from Rainier to Canada, but our room is larger and closer to the important things like free coffee and the family bathroom. After five laps, Dylan sent me out to find two good Bro movies at a nearby Redbox. I picked Fury and The Equalizer. Dylan ordered a hamburger from the cafeteria and I went down and picked up one for me too. The rest of the night was spent watching two violent movies and eating unhealthy food. It was petty good, it would have been better if the tv screen was a little larger than 21 inches and we didn’t have to put on the subtitles to see/hear what was being said, but all in all, watching the movies was really good.

The only mildly troubling part of the day was when Dylan was weighed. Two days ago he weighed 226, today he weighed 207. His weight has fluctuated like Anna Nicole Smith’s in the past two weeks and now that his guts are back to intaking and outputting, he has cleared out a lot of stored materials, so dropping twenty pounds isn’t shocking, it is just something for me to worry about.

It’s 6:35 AM, the sun is rising, planes are drifting up from SEATAC into the clear skies every twenty seconds, the top of Rainier is pushing above the morning cloud bank, and my son is sleeping soundly.

Ebb and Flow

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Dylan woke up the next day with unbelievable throat pain. No one was sure if the pain was a side-effect of the chemo, which happens, or if it was some type of infection so they bombarded him with everything. With cancer patients who have entered into a low immunity phase, there isn’t the luxury of waiting to find out the cause of the infection. Dylan spent the next 24 hours filled to the brim with pharmaceuticals and he was an unpleasant patient. He needed to move but refused to get up and “walk laps” around the ward. (The Oncology unit is a triangle of rooms connected in a way to allow patients to push their wheeled IV towers around like a flat version of an Escher painting.) A few hours passed and Dylan would not move, Joanna (Nurse Practitioner) came in, “I know this sucks. I know it hurts, but you have to get up and move. You can’t retreat into your mind. I do this to 80 year-old people all the time and they survive. You have to get up and move. You are young, it hurts, it sucks, it’s unfair, but you have to fight,” she said in a little half-time speech Vince Lombardi would envy. Dylan nodded, got mad, and then moved out of the bed and we walked three angry laps.

The day was long and I needed a break, I told him that I was going to run to the market to get him juice once he fell asleep, but what I really needed was a walk outside of the hospital. I put his cell phone next to his bed, waited for him to zone out, and then I left. I walked for about an hour. The weather here has been unseasonably warm, sorry East Coast, but temperatures have been in the mid-50s and there have even been a few clear days of warm sunshine.

When I got back he was still sleeping and I pulled up my chair next to his bed and held his hand until he woke up. When he was coherent enough to speak, even talking hurt his throat, he wanted me to read a poem or two. Through a series of thumbs up, thumbs down, we selected Wordsworth’s Tintern Abbey (the entire title is far too long to write, for someone who was one of the world’s greatest poets the dude could not title poems). I could read Tintern Abbey every day for the rest of my life and not get sick of it. It is a longer poem, but the rhythms of language are sublime. After I finished Wordsworth, I rolled right into Auden’s Musee Des Beaux Arts primarily for the first line, “About suffering they were never wrong…” When I finished I talked a little about the poem, showed Dylan the Bruegel painting that Auden was referring to and talked about how suffering is a human experience we all share but chose to ignore when it is happening to others. It struck me during my walk how many times I had driven by Swedish Hospital and ignored the suffering that exists within the hospital walls. Swedish had been an ongoing joke to me for years because a guy I played college basketball with had been born there and every time we played Seattle University we would drive by and Howie Myers would say, “I was born there.” Even after Howie graduated, I would say to other guys on the team bus, “Swedish, that’s where Howie was born.” The joke even infiltrated into my family, up until last month I could drive by the hospital and say to my family, “There’s Swedish, you know who was born there?” My family would answer: Howie Myers. It never got old for me, but sitting on the 12th floor during all of those Howie Myers’ jokes were people dealing with what my family is dealing with today. I hope a year from now I can drive by the hospital and say, “That’s where Howie Myers was born and where Dylan was cured of cancer.”

By the evening, Dylan was able to eat some apple sauce and drink a protein supplement. He slept reasonably well and woke up wanting food. We ordered eggs, bacon, and green tea. He ate everything. Joanna came in and outlined the next treatment: Sunday fill up with chemo, wait 24 hours, flush the chemo, check counts and if everything went well we might be able to go home for a few days. She also announced that his platelet count was low, 23,000. (The normal range is between 100,000-400,000.) He was going to get a platelet infusion so he could get above 45,000 and then get another shot in the spine. His immune system was broken, which was expected but his platelets seemed to be a concern for the staff, but Dylan’s spirits were up and then we got even better news. One of my ex-students, Amy, from many years ago contacted me through Facebook. She had read my blog and wanted to know if Dylan and I wanted to have a meal from the restaurant where she worked, Assaggio Ristorante. A great meal, from a place not called The Cafeteria? Yes, thank you very much. An hour later, Amy brought by Fagioli soup, Spaghetti Bolognese, and Cinghiale Pappardelle with wild boar. OMG!!! Dylan ate, and ate, and ate. It was the most he had eaten in a month. It was so good, and Assaggio Ristorante is now my all-time favorite restaurant in the world…Amy also moved up a few places in my list of all-time favorite students.

Around the same time, Tim (Dylan’s friend attending UW) brought by a bunch of Gatorade and a voucher for Tim’s family restaurant (The Dynasty) back in Sequim. Tim’s mom, Melissa, had a full menu of all Dylan’s favorite dishes listed on the voucher…such kindness.

The evening came and Dylan was feeling good. The day had been a great (speaking in relative terms) and things were really looking up as evening approached, and then things turned again. Dylan’s platelet counts had dropped to 17,000  even after the infusion. Another round of platelets was ordered up and there wasn’t much chit-chat about it from the staff. It is times like this that I get worried that things aren’t going as planned, which is always the fear isn’t it? Nevertheless, the shot in the back was delayed until his count came up. For the first time in his treatment he became chilled and needed warmed blankets.

The next day, my wife (Cheryl) and parents came to visit. My parents knew some people from their church who had an empty condo downtown that they were making available for my wife and I to spend time in when we could get someone else to spend nights with Dylan. My mom, an ex-nurse, was going to spend the night as Cheryl and I got away for a few hours.

The condo was over by Queen Anne, across town, and was walking distance from a nice group of restaurants. We left Dylan in the busy, capable hands of his grandma and did our best to have a relaxing evening. As we ate dinner and spent time talking about this awkward journey, most of our sentences were cut off mid-way as we paused to avoid crying, I’m certain our waitress thought we were lunatics, but after your child has been diagnosed with cancer what other people think stops mattering.

I outlined the last few days with Dylan and then something a bit magical happened. Cheryl talked about something she had shared with Dylan throughout his life that I was not privy to, and that was that even before he was born she had visions, or images of Dylan that were years away. They weren’t images she consciously thought of, they just happened, a little momma magic. Before he was born she saw him as a toddler and he grew into that very image. These images continued as Dylan aged and each time the image was exact and accurate. Those images ended a few years back as Dylan went through some very difficult depressive times and everything was dark. As Cheryl talked, I was reminded of the end of Raising Arizona where Hi (Nick Cage) talked about a dream he had of a future full of family and children even though is wife was barren. The end of the movie really hit me hard while watching it with Dylan and as I talked about it with Cheryl she said, “While I was driving home last week, just as I crossed the Hood Canal Bridge a new image came to me. Dylan was on a stage, he had short hair, like his momma likes, and there was a large crowd applauding him.” It couldn’t get much better than that.

Is this Hope, or Another Dead End?

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By Monday, eight days into our journey, I had hoped Dylan’s distended belly would stop growing, but it hadn’t. Each hour it seemed to expand beyond what was humanly possible. Nine months pregnant is one way to describe it, but I remembered a term from my research on the Lost Generation that people used to describe gentleman who had distended bellies from drinking too much, they called it German Goiter and I suppose that is the best way to say my son’s stomach had filled up and looked likely to burst. The chemo had attacked what was growing in his belly, but now his kidneys were unable to push all the poisonous fluids out. So in the morning we were scheduled for another drainage of his stomach cavity. By the time we were wheeled down to the ultrasound rooms it was nearly two in the afternoon and Dylan managed his misery by refusing to eat and grumbling about his discomfort. The Sonogram Tech was the same lady from the first drainage and she was very friendly and got us set up for the procedure. The doctor arrived, spent a little time scoping out the best spot to puncture Dylan, and then numbed/punctured/and began draining as if he had ordered a pizza that was about to arrive and he wanted the first slice. The fluid began to flow slowly out of Dylan’s right side and into the pressurized liter bottle. I had expected the fluid to roar out of him like a firehose, but it came out looking like an 80 year-old man’s urine stream. The doctor thought it was flowing pretty good and left the room. Twenty minutes later the flow was dribbling and the liter bottle was only half full. The Tech called the doctor, who returned smelling like fresh garlic and moved the catheter around a bit until he found a spot where more fluid was available. I joked to Dylan that this fluid was more of an Amber Ale color as opposed to the first two rounds which looked like Heifewizen. This joke did not make Dylan happy and in honesty the joke was made because I noticed the change in color and didn’t know if that was good or bad. Did a darker fluid mean things were dying, or did it mean that the cancer cells were winning? Doctor Garlic wasn’t around long enough to ask, because once he found more liquid he left the room again. It took a long time for the first liter to fill and by the time the second liter was started I had genuinely begun to worry that the size of Dylan’s stomach had more to do with tumor growth than it did with fluid. Another twenty minutes passed before the Tech called the doctor in to see if there was anything left in my son’s belly. There was barely a liter and a half collected and his belly had only shrunk to eight months pregnant. The doctor fiddled around for a bit and then hit the motherload. Suddenly the amber goo was shooting out of my son’s side like Old Faithful. It was blasting out so fast that the liquid in the liter bottle had a good-sized foam head on it. The second liter filled, then the third, then the fourth, and then a fifth. Dylan’s belly went from eight months pregnant to I think I missed my period in ten minutes

Locally produced, recently bottled, and limited release.

Locally produced, recently bottled, and limited release.

Doctor Garlic patted himself on the back and we headed back up to the room where Dylan was told that tonight’s chemo was going to go on for four hours. We talked about what he wanted to do while the process was taking place. The drug he was going to be given was one that was notorious for bad reactions. So the nurses were going to check on him every half hour and up the dosage if he was tolerating it. Dylan said I could pick the poem to read and he wanted to listen to Mac Demarco on the mini-stereo I brought from home. I decided that Allan Ginsberg’s poem America was the ticket for me, a poem of defiance as opposed to one that would turn me into a sobbing mess.

It was a long and difficult night. We ran out of Mac Demarco to listen to and switched to Radiohead as the night went along. The treatment was painful, Dylan spiked a fever, and his entire body ached. He wouldn’t eat or drink anything but by two AM we were done and his nurse, Jean Rose, socked him full of powerful meds that knocked him out.

When he woke up in the morning he wanted to eat something. He ordered eggs, bacon, sausage and potatoes. He ate it all, well almost all of it, the hospital sausages are the fancy apple-sage sausages that don’t taste near as good as a regular old salt and pork sausage. When he finished his breakfast he had transformed into the kid I had known two months ago.

“You know what I want? I want fries from Dick’s Burgers.” Dick’s is a Seattle chain known for heart disease and cheap, greasy food. I wasn’t sure if Dick’s fries would be allowed, but I thought I would ask.

Since Dylan had eaten so little in the past three days, I think our nurse, Kelly, was ready to feed him anything he would eat. She okayed the eating of Dick’s fries and I got ready for my first big adventure. It was about a 20 minute walk from Swedish to Dick’s and if I took a one block detour I would end up at Elliot Bay Bookstore where I could pick up something for myself. I put on my shoes, grabbed my rain jacket and was about to leave when Joanna, the Nurse Practitioner who was overseeing Dylan’s treatment came in to give us an update. She said all of his numbers had improved and THERE WERE NO CANCER CELLS IN THE SPINAL FLUID they had tested.

My German heritage did not allow me to fall on the floor and begin crying for joy, but inside there was a little German man laying on my heart shedding tears of joy. On the first night the doctors had mentioned the possibility of the cancer spreading to his spine and then brain. It doesn’t take a ________ _____________ to know how deadly that could be, so I was hugely relieved. Dylan would still need shots of chemo into his spinal column but there would be fewer of them which made all of us happy, how quickly perspectives change, a week earlier if I had been told that my son was going to require shots of chemo into his spine I probably would have shouted, “A plague on both your houses,” but today I was ready to celebrate.

I left the hospital with a little hop in my step and called my wife and mom to let them know the good news. My mom, who has Dutch roots, is a big crybaby. When she heard the news she turned on the waterworks to the point where I was walking down Broadway crying myself as I talked to her. I made it to Elliot Bay Bookstore without being placed in a straight-jacket, actually if there is any place in Seattle to cry openly Broadway is probably the best place, there are plenty of weirdos up here on Capitol Hill. I found the book I wanted, Ten Years in the Tub by Nick Hornby, and made a quick getaway and headed toward Dick’s.

Dick’s menu has not changed since the Mesozoic Period, four types of burgers, fries, milk shakes, soda and that is about it. If you want ketchup, onions, or tartar it costs five cents extra. I walked up to the ordering window, “Can I get two orders of fries, and could you wrap them in tinfoil so they don’t get cold?”

“We don’t have tinfoil,” the cashier lied.
“Could you wrap them in one of those tinfoil burger wrappers?”
“No, we don’t do that.”
Now, here is where I wanted to bust out the cancer card as in, “These fries are for my son who is down there in Swedish with cancer. Do you think you could wrap some damn fries for my son who has CANCER and wants to eat your f——- terrible fries!” But instead, I said, “Okay, I’ll take a Deluxe and I’ll wrap the fries myself.” I handed over the money, picked up my order, unwrapped the burger, ate it in four bites, and wrapped my son’s fries in the tinfoil Deluxe wrapper.

When I got back to the hospital the fries were still warm and my son ate them all, I’m sure if he lives to be eighty those fries will have taken two years off his life, but Carpe Diem damn it.

When he finished his fries Dylan said, “I’m ready for my haircut, but first I want you to watch some YouTube videos about giving a mohawk.”

My son has wanted a mohawk since 7th grade and we (his parents) have kinda put the kibosh on the mohawk talk, but now that Dylan was a few weeks from being bald and wanted to get a specific warrior mohawk, I was all in. We set up and I got out the clippers I brought from home and within twenty minutes Dylan became the envy of everyone on the cancer floor.

The evening came and Dylan began complaining of a sore throat. This was to be expected. Chemo messes up lots of body systems and one of the worst side-effects is what happens in the mouth and throat. By midnight we were filling him with Oxy to dull the pain and what had been a great day had suddenly turned into a terrible night.

Cancer isn’t really a roller-coaster, it’s more like an ocean voyage with no land in sight.

Is this real life?

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Nights in hospitals are long. The eternal fluorescent lighting in the hallways, the hourly bathroom breaks, and the switching of IV fluids never gives the ill or the family much time to tuck in a good solid sleep, so it doesn’t take long to get sleep routines jumbled into a mess. It also doesn’t take long to lose track of the day, the month, or even if this is real life or not. The evenings also brings one to the realization that nurses are awesome. I don’t know what nurses are like in every hospital in the world, but I know the ones on the Oncology floor in Swedish Hospital are angelic. The shifts here are from 7PM-7AM but most of the time the nurses are here longer than their shift and never say, “My shift ended 45 minutes ago so I’m going to let someone else do your blood work.” The shift changes include a tour of the patients they are serving (usually four for each nurse, five at night) and then the handing off of the baton.

When morning came after Dylan’s first chemo treatment he was introduced to his first male nurse: Stephen. There was no doubt where Stephen grew up because his accent was pure Boston. It had been about a week after the Seahawks lost the Superbowl to a team from Boston, so when Stephen asked Dylan, “Any questions?”
Dylan shot back immediately, “Who’s your favorite Seahawk?”
“I liiike Marrrshawwwnnn, Beast Mode.” (I don’t know how to write a Boston accent without using the cliché term “wicked smart.”
“Okay,” Dylan seemed pleased that Stephen wasn’t happy with the end of the Superbowl.
Stephen gave Dylan a great pep talk about cancer and the road ahead and then the day began.

Dylan wanted to breathe some fresh air so Stephen unhooked Dylan’s IV and I promised we wouldn’t try to run away. We put on Dylan’s robe, which we decided to call his smoking jacket from now on, and then took the elevator down to Starbucks. (Yes, there is a Starbucks in the hospital. This is Seattle. I’m surprised there aren’t four.) I noticed that Dylan was a little unsteady when changing directions or turning his head. I wasn’t sure what to expect after chemo other than his hair was going to fall out and one of the side-effects was winning seven Tour de Frances. As much as I wanted to suspend the realities of his situation, I knew deep inside that things were going to get much worse before they got better so I watched Dylan closely as we descended toward the main entrance and Starbucks. He was weak enough to ask for me to escort him the fifty feet to the coffee shop. There were lots of people around, it was something I hadn’t really noticed on my various runs to Starbucks on my own, but now that Dylan was scooting along with me, I could see he was overwhelmed with all the noise and people. The Oncology floor is quiet and there are not a great number of people visiting, but Starbucks was buzzing with business.

I found a chair for Dylan to sit in and then went to order our drinks. Dylan wanted a fruit smoothy (it was the first time he has ever wanted one of those) and as I stood in line I looked back at my little boy sitting alone in his chair. I noticed several people looking at him probably wondering what infectious disease he was spreading to all the patrons in Starbucks. I wanted to say, “Don’t worry, it’s just cancer, you won’t catch it,” but instead I ordered our drinks and helped him to his feet. We walked through the crowd to the main entrance. Dylan walked through the sliding doors and into the morning air. He took some deep breaths and then did something only a Washingtonian would do, he walked out into the rain and held his face up to the sky and let the water smack his skin.

When we got back to the room he was tired. He rested and I did what I could to distract myself, which was primarily watching airplanes drift in toward SEATAC and wonder where the plane was from. It probably isn’t healthy to hate people who are traveling to and from exotic locations while one is cooped up in a cancer ward, but that’s what works for me. Is it ironic that these very rooms were full of sick people while I was out traveling the world? Probably, but I don’t want to think about other people suffering while I’m having fun, so I guess it is okay for other people to enjoy life while I hate them.

In the afternoon, my wife and daughter arrived so Emma could get a look at her brother and understand that this might not be the best time to remind him that it was his turn to clean their bathroom. The suddenness of Dylan’s illness caught all of us off-guard and Emma must have felt abandoned to face a multitude of questions at school. We spent a little time together and then I drove back home with Emma to get things ready for the long haul.

The house was quiet. There is no other way to put it. Emma and I tried to watch a movie on the DVR but it was so bad we could not finish it (The World’s End–avoid this movie). Instead of trying another movie, I began packing clothing, grabbing books to read, movies to watch, and anything else I thought Dylan might like to have on hand. I wasn’t sure how long Dylan would be in the hospital, but the doctors said it would be chunked into long sections in the hospital followed by short stays at home, so I packed what I thought would do.

I don’t know what time it was when I fell asleep, I just know it was about three minutes after I scooted under the blankets. I woke up and went into work to get things together for as long as I thought I could. There was photocopying, planning, and a lot of other work but to be perfectly honest I wished I could put, “Do whatever you want” on my lesson plans and call it good, but I wanted  to leave work behind in the dust after heading back to Seattle. I called a few people at work and made sure everything was set, went home and gave my daughter a big hug, and drove back to the hospital.

It probably sounds strange, but the hospital seemed more normal to me. I don’t know why, but being home felt less real, like a dream, a place where cancer and suffering didn’t exist. When I got back to Dylan’s room my wife was packed up ready to head back home to be with our daughter. We spent a little time together trying to focus on the positives, Dylan was young and strong, we are in a great hospital, and the doctors are confident they can handle this thing.

After my wife left, I tried to rally Dylan to do something, but he was fatigued. He didn’t want to walk. He didn’t want to get his hair cut. (I brought clippers from home to give him a haircut.) He didn’t want to eat. We knew that tomorrow was going to include another draining of the fluid from his belly (it would be the third time) and a shot of chemo into his spine. His level of discomfort was high and there wasn’t much for me to do other than massage his feet and hold his hand.

As evening came, we watched the University of Washington basketball team play Oregon State. It was an ugly game and before long both of us were complaining about how terrible the teams were. It was like watching the worst form of AAU basketball: dribble, dribble, dribble, bad shot. We gave up on the game and started watching The Third Man, an old Orson Wells movie set in post-war Vienna. It was just the ticket, both of us zonked out before the movie was half over.

The night was long with pain meds, bathroom visits, and discomfort, but the sun came up and for the first time since being here I could see all of Mount Rainier. Years ago, I hiked the Wonderland Trail, a trail that circles the 97 miles around the mountain, it took ten days and there is no way I could do it today. Seven days into the hike, my wife brought supplies for me and my two hiking buddies. Dylan was two or three at the time and spent the hours waiting for us to arrive by tossing rocks into Mowich Lake. I still remember hiking over the rise and seeing him, he dropped his handful of rocks and came running, “Daddy” he shouted and jumped into my arms. I gathered him up hoping to hear the words all parents want to hear, he gave me a big hug and said, “You stink.”

Which Circle of Hell is this?

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After the diagnosis there was relief, this is probably hard to understand, but knowing it was leukemia made things easier. The doctors knew this thing, they treat this thing, they cure this thing, while this entire ride was going to be new for us it was a path the doctors and nurses had trodden before, it felt like entering a haunted house with people who had been there before.

One of the first decisions we had to make was how to let people know. Family had been kept in the loop, but there were many people who had no idea why we had all disappeared from the Olympic Peninsula in the middle of the night. We talked to our son, who has always had a hate/hate relationship with Facebook and decided the easiest way to let people know was through social media, at least then we wouldn’t have to talk to people and everyone would get the same message. So we posted this:

Our family has had a tough week and we have been pretty quiet about what is going on because we haven’t been sure. Dylan has not been feeling well for a couple of weeks and we have spent the last week in Swedish Hospital in Seattle with him. The doctors are pretty sure he has an aggressive form of lymphoma. He will be starting chemo tomorrow and there are challenging times ahead, but the doctors here are confident that they will handle all of this. Treatments like this can take some time and there will up and downs, but we have a great support system around us and so does Dylan. Days now are busy with tests and soon we will be focused on treatments. Cancer research has made great strides and Seattle is one of the leading centers for care. We certainly encourage prayers, thoughts, and love. Dylan doesn’t want a firestorm of attention, but we just wanted everyone to know what we know and that is we are going to kick some cancer ass.

Dylan was then put on NPO (No food or drink) from midnight until he had the port installed. The doctor thought we would probably be taken in by 9:30 AM and we would start chemo in the afternoon. The port is another one of those medical miracles that no should have to know about. Instead of continuously poking Dylan with needles for blood and fluids, the port would be installed under the skin just above his right pectoral muscle, a tiny tube would run under his skin into a major artery where he could get the chemo without destroying his minor blood vessels. At the same time the doctors would draw some spinal fluid from his back and shoot an equal amount of chemotherapy into his spinal canal.

The next day started early and by 10 AM Dylan was already begging for a drink of water. By noon he was ready to call the whole thing off. Between noon and two, I spent most of my time working on a crossword puzzle and staring at a small blue rubber band that the cleaning lady missed. I began to wonder about this little blue rubber band, where did it come from? Who dropped it? Where was it made? How much energy went into creating this tiny object that was now sitting on the floor no longer meeting its intended purpose? Our world is filled with objects like this, things made in far away countries, shipped to the United States, unpacked, driven to the hospital where it was unpacked and delivered to a storage room until it is needed and then dropped on the floor. What would the people in the factory think about their hard work? Would they be happy their little rubber band had escaped and was now free until the cleaning crew came back in the evening?

Eventually the surgery crew arrive to wheel Dylan downstairs for surgery. It was almost three when he was finally taken in. It seemed unnecessarily cruel, but one doesn’t have to spend much time in a hospital to realize that these places are busy and unpredictable; this was made clear as we waited in the pre-surgery room. An older lady was placed on one side of the curtain and an older man was on the other. Both of these poor people had been shipped in from accidents at home. The older lady was having difficulty breathing and the older man was having difficulty with everything and had the voice of someone who was lost in the fog of life.

Dylan was taken in and two hours later he was returned to the room a little doped up and with a shiny new access port for chemotherapy. Two of Dylan’s aunts brought requested Gatorade and lactose free chocolate milk. He drank the chocolate milk with gusto and declared the milk as the best thing ever.

During the surgery, my wife and I took advantage of having the aunties in the room and walked to the 8 OZ, a local burger joint that has words like “free-range” “locally sourced” and “grass-fed” all over the menu. Maybe it was the fact that I hadn’t eaten anything all day, this was not an intentional action of solidarity with my son, it just happened, there wasn’t time to think about food, but the grass-fed-holier-than-thou burger was the best burger I have ever eaten. While we ate, we talked about how we might manage the atomic bomb that had dropped into our lives. I had 120 days of sick leave stashed away, I knew the exact amount because I had been thinking about cashing in 68 of them next summer. (I won’t go into the inequities of why I have so many sick days and why my wife has so few, but some day the United States will figure out that pregnancies and child care are not social ills.)

We got back to Dylan’s room with a rough outline of what to do, I would stay with Dylan through this and Cheryl would visit weekends and other times when she needed to be in Seattle. We didn’t know how the details would work out, but sometimes details are for chumps.

The nurse, Nicole, came in and said that Dylan’s chemo would start around 6:30 PM. The aunties and Cheryl packed up and headed back to Sequim and then I talked to Dylan about what he wanted to do during the chemo administration, he said he wanted me to read a poem to him during the process and selected one of my favorite poems: Ode To A Nightingale. Then just as things were getting about as somber as things can get, a surprise arrived: Gabe, Jared, and Tim. Gabe had made a second trip from Spokane, Jared had driven down from Bellingham where he is going to school, and Tim came over from UW (on the other side of the city). It could not have happened at a better time. I left the boys with Dylan so they could talk about the nurses and other things young men talk about in a hospital when avoiding talking about why they are there.

Gabe, Dylan, Tim, and Jared.

Gabe, Dylan, Tim, and Jared.

When it was chemo time, the Nicole cleared the boys out of the room and they went down to the family room to watch NBA basketball.

I sat on the side of Dylan’s bed and held his hand. Nicole took out an enormous syringe from a sealed red bag and hooked it into Dylan’s chest port. I began reading Keats’ poem and made it through about two lines before I was pretty much an emotional train wreck. Keats wrote the poem after his younger brother Tom died from Tuberculosis and it is not one for reading to your son as he stands in the circle of hell called cancer. The lines, ” I have been in love with easeful death”and “now it seems so rich to die” are not lines parents should read while their child is getting chemotherapy. At one point, Nicole stepped in and read a chunk until I could get it together. All in all, it took about 30 minutes, 15 of which I spent in various states of distress, but Dylan got through it remarkable well.

I walked down the hall and told the boys they could come back to the room. Once again they raised Dylan’s spirits and I gave them some time alone. By the time they boys left we had seen one more medical miracle: bright orange pee. The chemo drug made its way through his digestive system and came out the other end. One at a time, we all looked at the toilet bowl filled with bright orange urine and laughed.

After the boys left, Dylan and I watched one of our favorite movies, Raising Arizona, and did the thing that annoys the lady members of our family, we talked loudly, laughed, and recited dialogue before the actors spoke their lines. It was a great way to end the day and there can be no better sound than laughter in a hospital room.

Into the Unknown

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Day two arrived, or was it day three? Hospitals are places where the normal rules of twenty-four hours cannot apply. The waiting hours are multiplied and the days can drift away without any feeling of accomplishment.

Each doctor arrived, handed over their business cards, and talked about what it might be. The first action was a visit to the ultrasound room for a sonogram and a perisomethingorother. The room was near the bottom of the hospital and it felt good to get out of the room and see that life was continuing without us. The strangeness of the ultrasound room was summed up in all of the posters on the wall: a collection of black and white images of babies floating amniotic fluid. This was a room set aside for the happiest moment of parenthood, not for looking into the belly of my son to find the best place to drain infected fluid from his belly.

The Tech came in and began the very familiar process of spreading the clear conducting agent on the head of the ultrasound sensor and then pushing it across my son’s belly. My wife and I stood looking at the monitor not really knowing what we were seeing and knowing better than to ask any questions like, “Does the liver look healthy?” We knew the main reason for this trip was to look at the liver and to gather fluid to test. I made the mistake of Googling the terms Liver Cancer as we waited in the hospital room after one of the doctors mentioned it as a possibility. The internet is a cruel place. Rates of survival for liver cancer are not high.

After twenty minutes, the Tech called in a doctor who introduced herself and proceeded to find the best location to lance my son’s swollen belly. She found the spot, marked it with an X like buried treasure, numbed the area with a couple stinging shots of pain-killer, and then took out the needle and catheter. (The needle sat inside the plastic catheter like the retractable part of ballpoint pen sits inside of the pen shell.) She lanced his side, withdrew the needle, connected a narrow tube to the catheter, collected several large syringes of a beer colored fluid and then began draining fluid into pressurized airtight liter bottles. Three and a half liters of fluid washed out of his stomach and into the glass bottles.

When the doctor was done, she sealed the puncture off with a bandaid and said the samples would be sent to the lab. I asked, “How long until we know anything?” Direct questions like this do not get direct answers, hours for some tests, days for some tests, no way to really tell. We made our way back up to the room and had our first positive surprise of this journey, one of Dylan’s best friends had driven to Seattle from Spokane (270 miles). Dylan was feeling much better after losing the extra liters of fluid and having his friend in the room lifted everyone’s spirits.

The rest of the day was spent teasing Dylan and trying to forget we were all in this room because we did not know what was going to happen. The unknown carries, pound for pound, more fear than anything else. The evening came without any answers, Dylan’s friend went to a hotel, and we slept as well as you can in a hospital when thoughts of death are floating around. The morning arrived and we waited. Dylan’s friend arrived, my wife and I ate some breakfast in the cafeteria and when we got back to the room one of the Oncology doctors laid out the rest of the day for us: blood tests, bone marrow draw, and a sonogram of his nether regions. We decided that Dylan’s friend should attend the sonogram and that I should run home and get supplies for the long haul.

Living two hours from Seattle was going to provide some unique challenges but with the diagnosis still unknown I drove home to pick up clothing for the next few days. It was easy to distract myself by listening to sports radio, the entire region had been wrapped up in the Seahawks’ Superbowl run and after the improbable loss the airwaves were full of anguish and second-guessing. People called into the AM stations to talk about how hard it was to get out of bed and how depressed they were. There are times when the cosmic ironies of the world are drawn into sharp contrast and this was one of those times for me. Sports have always been important to me, but I have never cried at a loss, I have never felt a deep connection to a team that would lead me to get depressed after a loss, and when your son is in the hospital the psychic pain people feel because Pete Carroll didn’t run the ball from the one-yard line is absurd.

I arrived at home, packed fresh clothing, showered, and waited for my daughter to get home from school. My mom had filled in at home for us and we talked for a little bit about what was going on. My mom is a retired nurse and has always been a great resource for medical advice, but I did my best to steer the conversation away from the darkest possibilities.

When my daughter got home, I spent time with her to see how she was doing, she was bothered by all the attention at school and just wanted to get through things as normally as possible. I left and drove back to Seattle.

The evening brought the first piece of solid information, there were cancer cells in the stomach fluid but the liver was functioning and there were no tumors there. Dylan took a deep breath and asked, “So, I have cancer?”

“Yes.”

I don’t know how it feels to be 20 and have a doctor tell you that you have cancer, but I do know how it feels when your healthy son goes from having stomach pain to being diagnosed with cancer in the matter of a few days, it’s scary. We all had a good cry and I felt an incredible relief, it wasn’t liver cancer. Soon after the news the lead Hematological Oncologist arrived to give more detail. There were terrifying possibilities, “the cancer could be in the spinal fluid” but the words I chose to remember were these: “This is a highly aggressive cancer, which is good because highly aggressive cancers are easier to treat and CURE.” We asked lots of questions and the answers were all very reassuring. More tests would be done, a port would be put in Dylan’s chest so he could begin Chemotherapy, and they thought they knew exactly what type of Non-Hodgkins lymphoma it was.

When Dylan was asked if he had any questions, he paused, thought for a moment and then asked, “Will I have superpowers after Chemotherapy?”

The Longest Journey

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Sometimes trips are long because one travels a great distance but there are times when a trip is long because of reasons beyond distance. The outward journeys our bodies take are often paired with an inward journey of the mind. The distances we travel in our mind can be both journeys of time and place. It is easy to travel back to 7th grade and relive the pain of those moments when I was a fragile shell of a person. Dwelling on those feelings of isolation and rejection can make my heart race and before I realize it I am reliving the time Jeff Harter took my sweet, long-handle comb and wouldn’t give it back. The mind can also extend moments and expands distances as we live through them. Ask anyone who has ever been in a car accident what they remember of the event and you will see how a moment in time is opened and expanded by the mind. So, when my phone rang at 11:01 on February 1st, I picked it up and started the longest trip I have ever taken. According to my iPhone the call lasted one minute, but that minute has altered my life as much as any minute ever has.

I spent the afternoon watching the Superbowl at a friend’s house. My son, Dylan, stayed home because he wasn’t feeling well and when I got home my wife wanted to run Dylan into the emergency room at the local hospital. He was in some discomfort and complained of stomach pain. Being who I am, I gave him a mini-lecture about eating right before my wife took him off to the hospital. I went to bed thinking they would be back soon and Dylan and I would spend the morning talking about why the Seahawks decided to throw a pass on the one-yard-line when they have the best running back in the NFL. When my phone rang at 11:01 I thought my wife was calling to say they were heading home, what I didn’t expect was what she said: Cancer. Cancer? Yes, Cancer. I didn’t know what to say, what can you say in a moment like this? It was like a dream where I was falling backwards through an eternal darkness, but this was no dream and there wasn’t going to be any waking up.

I drove the thirteen miles to the hospital in silence: The longest drive of my life. I turned the radio off and listened to the dull hum of the car wheels on the pavement. My mind ran through all the reasons the ER doctor must be wrong. By the time I got to the hospital arrangements were already being made to transport my son to Seattle for care. My wife and I did what people do in emergencies, we ignored every dark thought entering our minds and busied ourselves with calling in sick to work, getting plans to school, and then it all began. The ambulance arrived and my son was packed inside. I drove home, dropped off the car, and then my wife and I drove to Seattle to find our son in room at Swedish Hospital on the Oncology floor.

The next twelve hours were a blur. Three and a half liters of fluid were drained from my son’s stomach, blood was taken, bone marrow was drawn, ultra-sounds of his liver were taken, and multiple doctors gave varying possible causes for his stomach infection. The doctors who held out the least dangerous causes were listened to intently and the doctors who said things like liver cancer and lymphoma were marginalized.

My mom drove to our house to be with my daughter and the rest of us went to sleep in room 12– knowing that the morning would hold the answers to most of the tests being taken.

I was a nervous parent when my son was born 20 years ago. The moment he entered this world the doctor handed Dylan over to me and I watched him breathe. The short baby breaths worried me. He seemed unbelievable fragile and the world seemed so crushingly large. The nurse took him, cleaned him, wrapped him up, and handed him back to me. I felt unprepared for the journey I was about to embark upon, but the world has been cranking out babies for a long time and parents have probably always felt as unprepared as me, but that didn’t stop me from getting up each night and standing over his crib as he slept. I would watch him breathe. His little lungs puffing up and down. There were nights when I would hover over him wondering if he had stopped breathing, but those fears drifted away as he grew and grew and grew.

Those fears returned last week as I watched my son struggle with short breaths sleeping in a hospital bed in Seattle. He was now twenty times larger than when he came home, but that night he was still a fragile little boy whose father felt ill-equipped to help.

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