Tag: leukemia

Our Numbered Days

Dylan will finish his second round of chemo today at noon. We could be sent home in the late afternoon. We still have two rounds left, but if the last two rounds go this well we could be done with the chemo long before we thought. What happens after chemo? A month-long wait and then a CT body scan seeing if all the cancer is gone. I don’t want to think ahead to that time because the anxiety of the future isn’t worth the mental energy.

Yesterday, Shantel brought in Dylan’s latest blood work numbers. His counts are already out of the danger zone (below 1,000). Last round we were dealing with numbers like zero, 30, and 180; his total count is over 3,000. As Shantel said, “Your body is telling cancer to stay out.”

That doesn’t mean things have been all wine and roses here in room 1263, Dylan’s appetite is not great. The nausea has him down to eating in short spurts of opportunity. He has had it with the cafeteria food and so I have headed out to get him food from nearby restaurants, which isn’t a hardship because the weather here has been unbelievable, sorry East Coast, but Seattle was 63 degrees and sunny yesterday. So when Dylan said, “I want a chocolate Top Pot donut. A couple sausage patties and hash-browns,” I was happy to hit the streets in search of breakfast. As I was walking to Top Pot I noticed a homeless lady coming out of the bushes near a church. She started dragging her blue tarp and sleeping bag down the sidewalk blocking most of the path so I stepped aside to let her pass.  When she was next to me, she looked up at me and asked, “Are you a Wookie?” Okay, I get it. Tall, out of control beard= Wookie. The worst part of being mistaken for a Wookie was that I didn’t have a good response for this poor lady. All I did was give her a cheerful, “Nope.”

My mission to find Dylan exactly what he wanted was hampered by the fact that nothing opens on Sunday morning around here until 11 AM. So, I ended up gathering a couple donuts and a smattering of breakfast sandwiches from Starbucks and bringing them back to the room for him to sort through. He ate a bit of this and a bit of that and then laid back like a drunk trying to avoid the bed spins.

A bit later, around 9:30, he sat up and we took a walk to look at the Columbia Tower. Each year, firefighters from around the Northwest climb the tallest building west of the Mississippi to raise money for Leukemia and Lymphoma research and yesterday was the day the event was taking place. Some of the firemen dedicate their climbs to family members and friends as a way to inspire them to reach the top. Jared Romberg, a fireman we know from Sequim, was dedicating his climb to a family member and Dylan. (Donations are still being accepted: Columbia Tower Climb.

Columbia Tower is the tall black one.

Columbia Tower is the tall black one.

Dylan and I looked out through the large window in the family room at Swedish toward the Columbia Tower. In some ways it was a surreal experience, the tower looked the same as it always did, but today the stairways were filled with firemen climbing to the top to raise money for the very cancer that my son has.

When we got back to the room Dylan took a nap and when he woke up he seemed a bit bummed. “Does this feel real?” he asked. The funny thing is I knew what he meant. So much of our identity is wrapped up in our activity and when you are in a hospital the activities are things like getting blood drawn and talking about the color of your urine…the experience of hospital life has a way of disconnecting you from the world and soon you realize that while your life has stalled, everyone else’s continues to go on. I told Dylan that I didn’t know what it was like to have cancer, but I did know what it was like to lose your identity. Anyone who has played a team sport and had a serious injury knows what it is like. One day you are part of a team and the next day you are not, you are in some athletic limbo place where you exist outside the team. On 2/1/2015, my son was a Peer Support Counselor and full-time college student; two days later he was a cancer patient. I am certain that his identity as a cancer survivor will be a deep source of strength in the future, but for now he is sidelined from life and frustrated. This is a good thing, it means that he is beginning to think about the future.

I have also begun to think about the future. I have avoided looking on the internet for information about Dylan’s specific type of cancer. (If you recall, early in Dylan’s diagnosis liver cancer was a possibility and the survival rates are under 10%, so I have been reluctant to return to the internet for information.) Yesterday, while Dylan was taking one of his power naps, I went to the American Cancer Society webpage and looked around. There is lots of good news about cancer research and survival. Between 1975 and 2010 death rates for cancer victims have declined by 50%. Dylan’s specific cancer has a 50% survival rate. His age and overall health have been a great help in this fight so far, but we are not out of the cancer woods yet.

Maybe it is because I turned 50 yesterday, but I have been thinking a lot about my numbered days. So far I have been alive for 18,251 days. I don’t know how many days I have left, but I’m not going to spend too much time worrying about it. I have traveled, loved, cried, and shared life with wonderful people. These last 40 days have been some of the most intense of my life and I am going to agree with Jim Valvano on this one, a full day is one where you have the chance to laugh, cry and think, so most of these 40 days have been filled to overflowing. I don’t think we get a second chance at life, it’s a one shot deal, but if I did get a second round I guess it wouldn’t be so bad to come back as a Wookie.

Is this real life?

Nights in hospitals are long. The eternal fluorescent lighting in the hallways, the hourly bathroom breaks, and the switching of IV fluids never gives the ill or the family much time to tuck in a good solid sleep, so it doesn’t take long to get sleep routines jumbled into a mess. It also doesn’t take long to lose track of the day, the month, or even if this is real life or not. The evenings also brings one to the realization that nurses are awesome. I don’t know what nurses are like in every hospital in the world, but I know the ones on the Oncology floor in Swedish Hospital are angelic. The shifts here are from 7PM-7AM but most of the time the nurses are here longer than their shift and never say, “My shift ended 45 minutes ago so I’m going to let someone else do your blood work.” The shift changes include a tour of the patients they are serving (usually four for each nurse, five at night) and then the handing off of the baton.

When morning came after Dylan’s first chemo treatment he was introduced to his first male nurse: Stephen. There was no doubt where Stephen grew up because his accent was pure Boston. It had been about a week after the Seahawks lost the Superbowl to a team from Boston, so when Stephen asked Dylan, “Any questions?”
Dylan shot back immediately, “Who’s your favorite Seahawk?”
“I liiike Marrrshawwwnnn, Beast Mode.” (I don’t know how to write a Boston accent without using the cliché term “wicked smart.”
“Okay,” Dylan seemed pleased that Stephen wasn’t happy with the end of the Superbowl.
Stephen gave Dylan a great pep talk about cancer and the road ahead and then the day began.

Dylan wanted to breathe some fresh air so Stephen unhooked Dylan’s IV and I promised we wouldn’t try to run away. We put on Dylan’s robe, which we decided to call his smoking jacket from now on, and then took the elevator down to Starbucks. (Yes, there is a Starbucks in the hospital. This is Seattle. I’m surprised there aren’t four.) I noticed that Dylan was a little unsteady when changing directions or turning his head. I wasn’t sure what to expect after chemo other than his hair was going to fall out and one of the side-effects was winning seven Tour de Frances. As much as I wanted to suspend the realities of his situation, I knew deep inside that things were going to get much worse before they got better so I watched Dylan closely as we descended toward the main entrance and Starbucks. He was weak enough to ask for me to escort him the fifty feet to the coffee shop. There were lots of people around, it was something I hadn’t really noticed on my various runs to Starbucks on my own, but now that Dylan was scooting along with me, I could see he was overwhelmed with all the noise and people. The Oncology floor is quiet and there are not a great number of people visiting, but Starbucks was buzzing with business.

I found a chair for Dylan to sit in and then went to order our drinks. Dylan wanted a fruit smoothy (it was the first time he has ever wanted one of those) and as I stood in line I looked back at my little boy sitting alone in his chair. I noticed several people looking at him probably wondering what infectious disease he was spreading to all the patrons in Starbucks. I wanted to say, “Don’t worry, it’s just cancer, you won’t catch it,” but instead I ordered our drinks and helped him to his feet. We walked through the crowd to the main entrance. Dylan walked through the sliding doors and into the morning air. He took some deep breaths and then did something only a Washingtonian would do, he walked out into the rain and held his face up to the sky and let the water smack his skin.

When we got back to the room he was tired. He rested and I did what I could to distract myself, which was primarily watching airplanes drift in toward SEATAC and wonder where the plane was from. It probably isn’t healthy to hate people who are traveling to and from exotic locations while one is cooped up in a cancer ward, but that’s what works for me. Is it ironic that these very rooms were full of sick people while I was out traveling the world? Probably, but I don’t want to think about other people suffering while I’m having fun, so I guess it is okay for other people to enjoy life while I hate them.

In the afternoon, my wife and daughter arrived so Emma could get a look at her brother and understand that this might not be the best time to remind him that it was his turn to clean their bathroom. The suddenness of Dylan’s illness caught all of us off-guard and Emma must have felt abandoned to face a multitude of questions at school. We spent a little time together and then I drove back home with Emma to get things ready for the long haul.

The house was quiet. There is no other way to put it. Emma and I tried to watch a movie on the DVR but it was so bad we could not finish it (The World’s End–avoid this movie). Instead of trying another movie, I began packing clothing, grabbing books to read, movies to watch, and anything else I thought Dylan might like to have on hand. I wasn’t sure how long Dylan would be in the hospital, but the doctors said it would be chunked into long sections in the hospital followed by short stays at home, so I packed what I thought would do.

I don’t know what time it was when I fell asleep, I just know it was about three minutes after I scooted under the blankets. I woke up and went into work to get things together for as long as I thought I could. There was photocopying, planning, and a lot of other work but to be perfectly honest I wished I could put, “Do whatever you want” on my lesson plans and call it good, but I wanted  to leave work behind in the dust after heading back to Seattle. I called a few people at work and made sure everything was set, went home and gave my daughter a big hug, and drove back to the hospital.

It probably sounds strange, but the hospital seemed more normal to me. I don’t know why, but being home felt less real, like a dream, a place where cancer and suffering didn’t exist. When I got back to Dylan’s room my wife was packed up ready to head back home to be with our daughter. We spent a little time together trying to focus on the positives, Dylan was young and strong, we are in a great hospital, and the doctors are confident they can handle this thing.

After my wife left, I tried to rally Dylan to do something, but he was fatigued. He didn’t want to walk. He didn’t want to get his hair cut. (I brought clippers from home to give him a haircut.) He didn’t want to eat. We knew that tomorrow was going to include another draining of the fluid from his belly (it would be the third time) and a shot of chemo into his spine. His level of discomfort was high and there wasn’t much for me to do other than massage his feet and hold his hand.

As evening came, we watched the University of Washington basketball team play Oregon State. It was an ugly game and before long both of us were complaining about how terrible the teams were. It was like watching the worst form of AAU basketball: dribble, dribble, dribble, bad shot. We gave up on the game and started watching The Third Man, an old Orson Wells movie set in post-war Vienna. It was just the ticket, both of us zonked out before the movie was half over.

The night was long with pain meds, bathroom visits, and discomfort, but the sun came up and for the first time since being here I could see all of Mount Rainier. Years ago, I hiked the Wonderland Trail, a trail that circles the 97 miles around the mountain, it took ten days and there is no way I could do it today. Seven days into the hike, my wife brought supplies for me and my two hiking buddies. Dylan was two or three at the time and spent the hours waiting for us to arrive by tossing rocks into Mowich Lake. I still remember hiking over the rise and seeing him, he dropped his handful of rocks and came running, “Daddy” he shouted and jumped into my arms. I gathered him up hoping to hear the words all parents want to hear, he gave me a big hug and said, “You stink.”

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