The Longest Journey

A Thousand Tiny Scratches

Today is exactly three months from the day we began this journey. Three months none of us will ever forget. Three months filled with moments of terror, joy, and pain. Today, around 3 PM, the last few ounces of Etoposide will drip out of the clear bag, flow through the plastic tubing, move past Dylan’s rubber port, and enter his blood stream an inch or so above his heart.

When this started Dr. Pagel said, “This will take four to six months.” At the time, it seemed unendingly long, but now I am amazed at how quickly it has passed. Monday morning I will be back at work and life will return to something called normal, but life is never normal. There will still be doctor’s visits, blood draws, and the month-long wait before the CT scan tells us if all of this worked; that fear sits close to the surface.

On Wednesday, three days into this stay, Dylan had gained 10 pounds. Rapid weight gain was the first sign that Dylan had cancer. When Joanna came around for her rounds, word had gotten out about his weight gain. She started her visit with Dylan in the same direct fashion that only someone who has done a difficult job for years can muster, it is a directness all of us have come to appreciate, “So dude, you’ve been gaining weight. Don’t worry, it isn’t your cancer returning. We’re pumping you full of fluids. We’ll slow it down.” Relief.

Our last stay has been marked by lots of statements that begin with, “This is the last time we will…” The last spinal shot, the last bag of Ifos, the last round of Cytarabine, the last night in Swedish, the last morning. It is the last for us…if everything goes as planned. Around four PM today, Dylan will ring the bell and we will celebrate. We will go home. Dylan will be very sick for a few days and then he will get better. The blood draws will stop. The antibiotics will be gone and his hair will grow back. Our personal journey will be done, but the 12th floor at Swedish will be full.

Tuesday morning, just after waking up, I sat staring at the floor. (This is what people who blog do. They look at the floor, or their belly button and then write about it.) It is easy to forget how pervasive cancer is in our world until you begin to think about it. Swedish is just one hospital in one city. Seattle has three or four more hospitals treating cancers. Each city has at least one cancer care facility and each of those hospitals is filled with patients. The number of people who have been in room 1266 alone is staggering. I know this because of the thousands of tiny scratches in the linoleum. The marks of people passing through this room are not recorded anywhere, there is no wooden beam to carve “Dylan was here” into, but there are accidental scratches and dents in the room that hold the story of cancer.

Hospitals are full of impermanent things. Empty bags of saline are tossed out. Purple rubber gloves are used once and then rolled into a ball and disposed of. Little blue plastic caps connecting the IV lines are sanitized and dropped in the trash. Everything in a hospital is designed to avoid decay. Use it, toss it out and nothing can decay, but beneath the surface of impermanence are the thousand scratches of lives that have passed through this place before we arrived. Our story is personal, but sadly, it is not unique. Many of the scratches have been left by people like us, the survivors, but there are also the many scratches left by people who did not survive. We are the lucky ones. The ones who will get to go home and watch a bald head grow hair, the ones who will remember Swedish hospital as the place where Howie Myers was born and my son was cured of cancer.

11 replies »

  1. Thought this Leonard Cohen piece might be particularly meaningful at this time of your journey.

  2. Ring.The.Bell.Dylan. I just read an article today about a famous footballer’s wife who succumbed to breast cancer at 34. And I thought, how young! She hadn’t even started living. And Dylan is only a little over half her age. But he is done, and he is strong and he is going to be ok. Her scratch on the floor of whichever hospital she was treated in will be there for the next husband or father or mother or daughter to contemplate. But I have to believe the scratches of the Dylans are winning. The ones who ring the bell and leave and remember those months they held mortality in between the tip of a finger and thumb and never, ever take it for granted again. (I want a bell picture, btw :-). )

    • Picture and video will be taken. It does seem like more people leave the 12th floor upright and under their own power these days, I don’t know if that was true a few years back so the trend is toward scratches reminding people of time spent as opposed to reminders of people who have passed on.

  3. Happy for Dylan and the family to hopefully resume a “normal” life. But, as you say, what is really normal? Obviously not that COLA beard that still dwells on your chin!!!! ha, ha. I liked reading about your analogy of scratches on the hospital room floor. Our lives are full of scratches, some larger than others, but hopefully the gouges and deeper wounds are kept to a minimum. Even so, those deeper wounds make up who we are. Although most of us have the ability to make choices in our lives, some scratches we are unable to polish away, even though we desperately try. Besides your obvious talent of using words to describe your journey, I also learned more about that 6’5ish smooth shooting forward from Whitworth College. That is, when reading your “blogs” about this difficult journey it is obvious that you must be an outstanding English teacher, husband, and friend to many, but your love for Dylan and the important things in life really shines through. Ironically, I feel that I’ve learned more about you and your unique and caring dispositions by reading these last 3 months of posts, than all those times riding to basketball games or playing on the court together. We know that parenting is a difficult process, but Dylan is definitely in good hands Jon 🙂

    • Thanks, Aaron. You’re pretty good with the old verbiage yourself. We did have lots if those drives to games didn’t we? The #1 lesson I learned was: Don’t drive a mini cooper over a dead deer.

  4. Alleluia, alleluia that you get to ring that bell !!! Continuing prayers for Dylan’s healing. I know your whole family is waiting to exhale. I’ve enjoyed reading your blogs, Jon, which have at times been heart-wrenching, joyful, humorous, touching, mind boggling and sad….sometimes all in the same blog. You certainly have a talent for putting your thoughts and feelings into writing in ways that are moving and thought provoking. Most of all you have a talent for being a compassionate, loving person that makes your son and your family very blessed indeed.
    Lynne

  5. Blessings and prayers for you Dylan.
    Can’t wait to see pix of you ringing bell!!
    😎😜😀👀🆒👍🏼

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