The Longest Journey

Which Circle of Hell is this?

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.

20 replies »

  1. Your first paragraph had me nodding at my desk. Yes, yes, this is something they can manage now. I’ve seen it. They’ve talked of curing cancer but how amazing is it that they can at very least treat the bastard! Terry Fox is a Canadian icon who tried to run across the country on one good leg and one artificial one to raise money for cancer research. You may know the story, but the cancer that took his leg spread to his lungs halfway through the trip. I was 15 when this happened. Every year since, there are Terry Fox Runs across Canada, and so much money has been raised. My point is, today, Terry likely would have survived thanks to the advances in treatment.
    I’m very moved by your telling of this and anxious to follow along, not only because of what you’re writing and the sensitive way you’re doing so, but because I have a son – a tall, food-guzzling 19-year-old basketball player. And the photo today is hitting home. I can’t imagine what you’re going through.

    • I watched the 30 for 30 on Terry Fox that Steve Nash produced; it was really good. It is odd how all those stories of cancer survival are now more than just stories to me. The groundwork laid out by all those lives before us are now pretty well traveled and known. Dylan will also be getting DNA typing to help others as well as himself in the future. It is really reassuring when the doctor says, “You might need this in the future.” I don’t think that would have been said 10 years ago.

  2. Just ditto to what Ross said, as a dad — thank you for sharing and I hope in some ways it’s helping you process all that’s going on. Life can really turn on a dime like that for us. I am wishing you well friend. “Words, words, words.” Sometimes useless, but they convey a sentiment.

  3. Well, I cold tell you that I cried reading this, but then I felt like that would put the undue burden of responsibility for someone else’s feelings on your already laden shoulders…so I almost didn’t…but I don’t know, it seems like that hive mind of human emotion that comes into play in these circumstances, these emotions by osmosis..well, they’re just there to buoy you up when you need it. So feel free to float on for a while, ok? Just close you eyes and recite your lines (movies, odes, whatever) and don’t worry about who or what is holding you there.

  4. Jon I love that you read that poem to him. Love the rubberband story too. So touched by his Friends visiting from afar and at just the right moment. how cool is that. I’m glad he finally got to drink something too. I’ll remember about the Gatorade and such. Thank you for being the Greatest Father and staying with him. I’m sure he really appreciates it and so does everybody else. See you all soon. Love Auntie Anita

  5. Jon, you are doing some of your best writing ever. I feel as if I am right there with you and your family on this terrible journey. I wish there was something, anything I could do to make things better for Dylan and your family.

  6. I’m way to emotional to even bother finding that poem to read. As a dad, I can only imagine what races through your mind. I’m praying that you Ninja-round-kick some cancer butt. And do it soon. Stay strong. And keep writing.

  7. As a Mom battling cancer, I can only imagine how challenging it would be to watch a child of mine battle this disease. I have always said it takes more courage to “watch” cancer than it does to “have” cancer. I hope you find some peace and comfort in this journey.

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