The Longest Journey

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.

19 replies »

  1. When I read the firefighters climbed the tower, I thought they CLIMBED the tower. Man… respect! No wonder they get all the babes.
    Glad the news is good this morning.

  2. Well how cool is that! Dylan has his own firefighter sponsor. I would have a heart attack climbing just a few flights of stairs. I would have to climb a flight or two, take the side door to catch the express elevator and then hang out for a few hours to climb the last few flights to cheering crowds.

    Glad a Starbucks was open to save the day.

  3. I’m a few years behind you, but I’ve found myself fighting bouts of anxiety about the how long I’ve lived already/I have so much I want to do/Oh My God are those jowls stuff going on. I love that definition of a full day. I’m not sure I am emotionally stable and/or able to handle 40 of them in a row–so kudos to you and Dylan for climbing your own tower.

  4. Reincarnation adopted by Chinese Taoism from the teachings of Buddhism is a fascinating thought. Some would definitely enjoy being a Wookie, while others may simply choose to be a Munchkin????? The limitations went beyond language deficiencies for these characters over 70 years ago!!!!! Keep up the faith Mr. Wookie 🙂

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