The Longest Journey

Three of Four

Yesterday, I packed a “bug out bag,” loaded Dylan into the car and made the 80 mile trip to Seattle. We were heading in to get a blood draw, look at numbers, and find out when we would start his last round of chemo. The “bug out bag” was along because sometimes these doctor’s appointments turn into a stay in the hospital for a bag of red blood or a bag of platelets. It takes about two hours for a bag of red blood to be infused and a half an hour for platelets, but it takes hours and hours to get the blood ordered and hooked into Dylan’s port, so I left home expecting to be gone for a good long time.

Dylan is a grump in the morning, this has always been the case, but chemo has added to his lethargic morning routine. I woke him up gently an hour before we were leaving so he could get up slowly, then 30 minutes later I woke him up again, when he finally started to move he needed a dose of pain meds. We loaded him up internally and then moved him externally to the car. These trips are tough on him. He gets headaches when sitting up too long, he is light-sensitive, loud noises bother him, and can be a demanding diva when his needs are not met. These drives have not been my favorite part of his treatment.

In 1997, Dylan and I drove across the country so I could study the poetry of John Keats and William Wordsworth at Kenyon College in Gambier, Ohio. (He was 3 1/2 at the time, so I did most of the driving.) It took us five days to get there. Dylan sat in his car seat in the back surrounded by all the stuff I thought we would need to stay in a dorm room for a month. My wife and new-born daughter flew out to Columbus a few days after Dylan and I arrived at the college. These were the days before cell phones and daily internet updates so what I remember of the trip is stored somewhere in my head. There were long days of driving, stops at any place that looked mildly interesting, and hours of talk centered around dinosaurs. The long days were strung together by hotels stops in Missoula, Miles City, Fargo, and Madison. We arrived in Gambier late on July 3rd, got our room set up, and went to a parade on the 4th where lots of candy was tossed from firetrucks. We spent the first few evenings playing whiffle-ball and being amazed by fireflies. These were the days when disagreements were solved by me picking him up and carrying him where I wanted him to go, that doesn’t happen much any more.

In Helena or Butte we stopped at a connivence store to get me some coffee. (Long ago, kids, long before there was a Starbucks on every corner, getting coffee was done at places like 7-11.) As I was walking back to the car, coffee in one hand and Dylan’s tiny hand in the other, I heard a  young girl’s voice, “Mister. Mister, can I have a ride?” I turned around and there was a blonde girl in dirty clothes who looked like she might have been 12 years old. I’m not big into picking up hitchhikers because they don’t have a great knowledge of dinosaurs, but when she said, “I ran away and now I want to go home,” a little part of me knew I couldn’t refuse.  She looked harmless and scared.

“We’re heading east, if your stop is on the way, we’ll take you.” She said her home was to the east and so she hopped in and we started out of town, got on the highway, and then discovered that her east and actual east were two different directions. I don’t believe she was being deceptive, she just didn’t know which direction east was. Her home was 90 miles out of the way to the north. To stay on schedule I couldn’t afford to spend three hours driving around Eastern Montana looking for her house. I turned around, drove to the bus station, bought her a $14 ticket to her home, gave her $5 for lunch, and then left her sitting in the dark bus station.

A couple of times each day Dylan would ask, “Who was that girl? Why did we help her?”

I told him we helped her because that is what we do and I hoped people would help my kids if they were ever in trouble. Which is true, but what I didn’t say was that I wasn’t too sure the girl was going to head home. Was she worldly enough to know how to turn her $14 ticket and lunch money into a $19 ticket that would take her further away? Was she heading back to an abusive step-father? I guess I will never know but that young girl is probably close to 30 years old now.

Eventually, Dylan and I got to Ohio, but there were days where the confined space and frustration of being cooped up got to us. Lately there have been a few times I have felt that frustration rising in me again. Yesterday, we missed the ferry by about two minutes and had to wait an extra hour in the car. When we got to the doctor’s office it took longer than usual to get his blood drawn, and by the time we arrived for our appointment Dylan’s pain meds were wearing off. He was having trouble being nice and I did my best to rub his back and soothe him, but I was getting agitated with everything.

He was examined. The nurse said the blood work wasn’t done yet, but he should expect to get a transfusion of some kind and then the doctor came in and took a look under the hood. We kept waiting, we turned off the lights in the room and Dylan laid down on the examining table. I rubbed his head and then the blood work was in. It was fantastic. All his numbers were way up. I was super happy, but Dylan was in pain and in no mood to celebrate. We would not have to come back to the hospital for two weeks! We did not have to do any blood work while at home!

We left the office and had to wait a bit for a new prescription so I asked Dylan if he wanted to get something to eat while we waited. He could eat out because his numbers were so good. “I only want fries,” he said.

“I’m not going to McDonald’s. Isn’t there anything else you want?”

“I want fries. I’ll wait in the car.”

“I’m not going to McDonald’s.”

“I want fries.”

“That McDonald’s is the worst place in the world. I’m not going there to get you fries. Isn’t there something else you want?”

“I want a large order of fries.”

I was very, very, very, very unhappy. (Remember how happy I was ten minutes ago?) I left Dylan in the car and marched the two blocks to the worst McDonald’s in the world. It wasn’t really the fries, but it kind of was the fries. I wanted to celebrate. Dylan wanted fries. I wanted to sit down in a nice place and have a full meal. Dylan wanted fries. I did not want to go to the McDonald’s where all the homeless people spent their quarters, but Dylan wanted fries, so I went there, got him his damn fries and marched back to the car.

We spent the drive home not talking. We tried to talk about what happened, but I was just too mad and needed to have some time to run into the forest and scream until my voice was raw, but instead I drove home and Dylan slept.

We have one round left. Dylan is healthy. Spring is here. I might be able to go back to work for a bit. Things are good, but those damn fries…!!!

14 replies »

    • She was pretty scared so I hope her fear kept her going toward home, but it is so easy to get derailed and end up in a bad situation when you are that age. Let’s pretend everything went great so I can stop feeling guilty about it. I do think there is a story there too.

  1. i went to McDonald’s in Belfair to use their bathroom and the smell of the fries. Arg matey it is like an aphrodisiac. I think it must be a scientific combo to trick the mind into desiring them. I didn’t get any but I was tempted.
    Oh and on the drive long ago – it sounds like you did most of the driving, but did Dylan do a portion?? Lol/ hehe.
    Ecstatic that his numbers are up and thAt you all are home for a bit!!!
    Love any prayers to you all!!!

  2. It had to be Helena you were in because TRUST ME if it was Butte you would never forget it. It is the creepiest place on the planet. It has a large “pit” which is filled with toxic water and I’m convinced everyone from there is super human. (Point of reference the guy who killed Osama Bin Laden is from Butte). Butte also has a ginormous Mary statue in the mountains above the town that glows at night. (Probably sprinked with the pit juice).

    I’ve been very metaphoric lately and was thinking about how you can only see the stars when there is darkness. The darker it gets the better you can see them. I hope that as this horrific journey comes to a close you will be able to find and focus on the stars. ❤️❤️

  3. Jon, you have scars from Butte on your forehead–that is where you ran into the display case above the mine pit and had to have stitches -you were about 4 yrs. that time -1 of 3 forehead stitching events. Mom

  4. I LOVE this. For so many, many reasons. Have you ever read Geek Love? (If you haven’t, promise me you will because it’s in my top 5 books of all time). What I love about Geek Love is the same thing I love about this post. Out of the ashes of an extraordinary situation, the mundane rears its head, and suddenly what was turned on it’s head is not anymore. So, there’s that. Then there’s the girl. The GIRL! She’s straight out of Joyce Carol Oates. Then there is this line: We spent the first few evenings playing whiffle-ball and being amazed by fireflies. That sums up not only a few evenings, but an innocence–of childhood, of a time gone by, of memory. And finally, there is the fact that Dylan is responding so well. Hooray!

    • Thanks, I have not read Geek Love, but I always need a new book, always, it could be a psychological problem but some kinds of crazy are worth living with.
      Someone said to me yesterday, “Getting mad a Dylan is good. He’s healthy enough to get mad at again.” Yep, that’s it.

  5. The fries are about normal. Yes. The hope, too. The hope that all will go back to normal. Whatever that may mean. Isn’t it wonderful, to feel and to express being mad in the presence of an offspring? The love so intense that unless there is warranted fear of loss, of said offspring, it is impossible to feel the depth, let alone express it. McDonald’s and fries…so much more palatable than swallowing fear, No?

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