The Longest Journey

Is this real life?

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.”

12 replies »

  1. Hospitals are breeding grounds for Stockholm Syndrome, but in a positive way. You get used to the routines surprisingly quickly. It will be interesting to see what your son recalls from this in the years ahead; I suspect it will become blurry, especially after all those Tour de France wins.

  2. I read your previous post and this one. I have to say, I’m that little boy, well not really, i’m 36 now and have a son of my own, but to my father I can see what he sees. I’m actually in the hospital now on day -6 of a bone marrow transplant. I was diagnosed in july with AML which later was changed to a worse leukemia called CMML when I had a bone marrow transplant consult. I can identify with how you present your experiences. I remember sitting in the hospital too sick to really care what was wrong, I was there to get the fix. Just fix me already and send me home, I’ll beat this down whatever it is, lime disease, lupos, what is it? Leukemia.. whats that? cancer? The doctor muttered it out. Like, well you have leukemia and blah blah, blah blah, i’ll be right back. Seemed like a long conversation but it only took less than a minute. I could see my wifes jaw dropping beside me as she silently stared ahead. I was still processing plenty of thoughts that seemed to take much longer than the actual conversation with the doctor. TIme kinda warped around. I figured, I’ll take the chemo pill and go home in a few days. I was there for 5 weeks and had over 16 blood transfusions and 4 bags of platelets. I’ve done surprisingly well through all this but going through this thus far leaves a large lump in my throat and a soft spot for children going through this and their parents looking down hopelessly. Its hard to really understand what its like unless you are the one who has leukemia. But its equally hard on family members, they just suffer in a different way. I’m not sure what your son has, but I’ve been documenting my process thus far as well as my faith and a few life stuff. Feel free to read it when your board or just curious and need to pass the time. I will keep you and yours and your family in my prayers.

    • Thanks for your message. It’s a strange journey, this cancer thing, and it certainly helps to focus on what is important. I’ll jump over to your blog today, right now my son is getting a shot in his spine and I’m wasting time doodling on my phone. Good luck and God Bless.

  3. For me, hospital life has a sense of unreality and way too much time to observe the details. There’s also optimism and kindness, which you seem to be experiencing. Take care.

  4. Prayers out to Dylan and your family. My family and I will hold you all close in our hearts & we’ll continue to send prayers your way each and every day.

  5. I’m struggling to read your stuff, not because of bad writing, obviously. But this is heart wrenching stuff. Makes one re-evaluate and more importantly appreciate the important stuff…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s