The Longest Journey

Learning to Say Yes. 

Three weeks, it’s now been three weeks, we thought be would have taken Dylan home by now, but we haven’t. Instead we watch blood counts, brush the dead hair off his pillow more and more often, and wonder why his body hasn’t snapped back into place. Everyone assures us that this is natural, that these things happen, and then you go out into the real world and see people. I went home for a day over the weekend. I needed to pick up some things from work,  get fresh clothing that I assumed I wouldn’t need, and spend some time with my daughter, Emma. What fun stuff did I do with Emma? We changed the oil in the car and watched a movie that would have been good if it ended thirty minutes before it did. (Lucy if you are curious. It wasn’t great, but the last thirty minutes were not excusable. Let me just say if your movie ends with a flash-drive being delivered after 2,000 people have been graphically chopped up, blown up, shot, and disintegrated it is time to rethink the script.) My time at home was good, but it was short.

On my drive back to the hospital Emma and I listened to two things that are our things. We listened to Bambu’s new album because we will be attending his concert on March 11th and we listened to a Dear Sugar Podcast. (Dear Sugar was an advice column done by Steve Almond and Cheryl Strayed for the online lit site The Rumpus. If you are not familiar with the column or podcast, and can handle intelligent people talking about adult situations, I highly suggest it. You’ll laugh, you’ll cry, you’ll cringe.) One of the issues discussed during the second podcast was that there are two stories we tell: The story where we have it all under control, and the truth. This concept isn’t new to me but the past three weeks have been a combination of these two competing forces. I have found it easier to tell the truth in my blog, but as one of the guests on Dear Sugar said, “You can come out of one [truth-telling] closet, but you find you are in another one, and then you have to decide how much you really want to reveal.” So even my confessional blog pieces are hiding some of the real truths that sit below the surface and are either too embarrassing or selfish to share.

Telling the truth in real-time is more difficult. I can do my crying in the corner of room 1266 while I write and no one really knows, but it is tough to talk to people about the terror, helplessness, frustration, and reality of an unreal situation. I haven’t had to talk too much to people in this way because almost everyone I have seen over the past three weeks has been family or hospital staff, they know what is going on so most of our conversations center around Dylan’s health. Sometimes people ask about how my wife and I are holding up, but for the most part I haven’t had to do too much emotional heavy-lifting in public and as we move into the first month of this cancer thing it has become easier to be under control.

The first time I went home was a round trip, Seattle-Sequim-Seattle in the matter of a few hours, I was waiting on Bainbridge Island for the ferry to arrive. I got out of my car and walked over to the nearby coffee stand (if you haven’t traveled in the PNW walking to a coffee stand is like walking to a Paris Metro station, they are never more than 400 meters away). I ordered a coffee, bought a Seattle Times because I still like to get newsprint on my fingers, and picked out a day old pastry. The Barista did what every barista does, she asked, “How’s your day going?” It is a perfectly innocent habit we have in the US, we ask this question instead of standing there in silence, but the question hit me in the softest part of my body and I wobbled out a “It’s getting better.” By the time I got my coffee, my eyes were filled with tears and the Barista did her best to not notice, but then probably got on her Twitter account and sent a message: “OMG! Creepy Beard Guy crying at the coffee stand. #ABeardDoesn’tMakeYouAMan #TheCoffeeStruggle.” Since that time, I have only cried in public while sitting by myself in 8 oz Burgers and with my wife as we ran through the timeline of events while sitting in an upscale Mexican restaurant on Queen Anne Hill. The good news is that when you cry in public, people leave you alone. They assume you are either mentally ill, or a threat, so they turn away and wait for you get your act together. The other thing I have discovered is that I just don’t care anymore. Being pressed against the reality that your child may die is freeing and it begins to connect you to people who have been through the same thing. It is amazing how large the circle of cancer is. If you have not had a family member, or close friend touched my cancer, you are in a small minority.

When Cheryl and I entered into this journey we had a memorable discussion about how to handle this journey. This blog is part of that conversation, but one of the other decisions we made was to say, “Yes.”

So much of parenting and living is saying, “No, we have this under control,” even when everything is out of control. When we have had family challenges in the past, we have always hunkered down and kept up the illusion that we were managing. Sometimes we were managing, but there were times when we should have been willing to take help, but like an alcoholic we had to hit rock bottom before we could accept people’s generosity. This time we decided we would say, “Yes” when people offered. Yes, to meals cooked. Yes, to reading material. Yes, to help at work. Yes, to taking care of the dog. Yes, to the universe. Yes, yes, yes.

So, when Emma and were eating breakfast at the 101 Diner on Sunday and our waitress asked, “How are you guys doing?” I knew it wasn’t the generic question, it was genuine. Instead of saying, “We’re doing great.” I said, “It’s been tough. We are managing, but it kinda turns your world upside down.” She knew what I meant. Her son had cancer. He did not survive.

When I went into work to pick up a few assignments to grade I ran into one of my co-workers/friends there. He offered a hug, it was more of a demand than an offer, it was a good hug. He knew what I was going through. His mother had cancer. She did not survive.

My son has a form of cancer that is treatable today. Five years ago that was not true. Dylan’s treatments have been built on all the people who bravely fought against this disease and future treatments are going to be built on my son’s. He still has a long journey ahead of him, but today his journey has been made smoother by the lives that have gone before him. In ten more years Dylan’s treatments will seem like Dark Ages medicine, but for today it will do. Today, the universe has provided us a path to follow out of the cancer jungle. It is a path forged by those how have hacked their way as far as their legs could carry them, and for that we are thankful.

18 replies »

  1. Your ability to make me laugh (#TheCoffeeStruggle) and droop with heartbreak (the forced hug) is remarkable. It’s all so open it makes me wonder what “truth” you could possibly be holding back.

  2. What a good decision…to say “yes.” Love your family dearly! Please tell Dyl that I said hello and give him a hug for me! Love your perspective in this post, too!

  3. Oh Jon, I go back and forth between tears and out and out laughing snorts with each of these posts. We’ve known each other a long time and I think of you as family. You were the obnoxious brother I never had, but what I wouldn’t give right now to give you a big hug and tell you that you are a fabulous writer and somehow in Knatterud’s absolutely effing boring English class you must have been actually paying attention ( unlike the rest of us). I love you guys and am praying everyday for the strength and peace to get you through all this. Dylan is so fortunate to have you and Cheryl as parents. Take care of yourselves too and hugs to all.

    • What I learned in Mr K’s class: you can lose your glasses on your head when you reach a certain age, Mt Whitney is where real scholar athletes go, and students will listen to the same story again and again if it means they won’t have to work. Oh, thanks, I’d take a hug.

  4. Jon,

    I know you fancy yourself to be somewhat of a writing prophet, but the Koresh beard must go!!!! I can see the look on that Barista’s face :-0 ha, ha. A very nice choice of words and tribute to all the people who had courageously fought the battle to help advance the medical treatments. My sister survived breast cancer a number of years ago and continues to be in remission. The moments of crying that you share reminds me of Jimmy V’s great speech regarding the fight against cancer. A great day includes laughter, crying, and time for thought, and or, reflection. You’ve had some great days and you, Dylan, Emma, and Cheryl will continue on with many more. Thanks for the post Jon.

  5. i too was called by these scammers and they asked me to sit in front of my computer type windows & r at the same time then type 6 letters and hit enter and all these yellow trianglels with question marks with the results showing 22,000 errors. I cant remember what the 6 letters were can anyone help me. i did figure out after about 15 minutes it was a scam then i found this site.

  6. This is perhaps my favorite article you have written so far. One of the most important things I learned this semester was that the most sustainable buildings come from existing buildings. It is more sustainable to make your buildings last as long as they can rather than knocking them down and rebuilding every few years.

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