The Longest Journey

Ebb and Flow

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.

15 replies »

  1. Words can be therapeutic, not only for one’s own mind but for others as well. Liked your story about Howie. Ha, ha. When I was at Harborview, aka HarborZoo, for over 30 days I had never thought about all the people who are hospitalized every day, every moment. And, any student, present or former, who hooks you up with some great grub definitely moves up the “list” of favorites! 🙂

  2. I often hear you talk with me about your journey and then it shows up in your blog…the effect is to know how privileged I am to share these moments with you. I, too, feel helpless knowing how to be YOUR Dad. But most of the stuff that it
    has taken to be your Dad has happened in our past.
    Now I get to see what a great person you
    have become. But as we are both discovering, parenting is a life sentence.
    As it should be! I love you
    Dad.

      • I’m waiting to get off my meds before you can accuse me of my relationship with the bottle. Misa and Shira gave me a bottle of PIKE ENTIRE wood aged stout from Pike Street Brewry.. It’s cooling in the garage refrig. It’s the first $10.00 bottle of beer I’ve ever owned.

  3. Man…

    Musee is one of my favourite poems. I just re-read it after this. It never gets old, and a great poem for young people, thanks to its relative accessibility.

    These posts are pretty devastating. Then I read your comment to your dad. Ha!

  4. I recently read an interesting article about someone I knew in the Navy who now owns a bar in Capitol Hill (this part has nothing to do with you and you’re welcome to skip the next 26 words if you like, to get to the part that is pertinent), who’s been going to some rough times. I think I’m going to catch up with him if I can. His place is pretty easy to find. I expect I’m going to drive up I-5 to get there (from Kitsap County) and will see Swedish on the right. I’m going to say, out loud, “Hey, that’s Swedish Hospital. That’s where Howie Myers was born and where Dylan was cured of cancer.” Yes, I’m going to use the word “was”. And it doesn’t matter to me if it’s the wrong Swedish Hospital. Hell, it could be a hospital in Sweden – I’d still say it.

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