The Last Laps

I am sitting and writing in the chair I was in when I started this journey with Dylan. We are back in the room where we started, 1266, and Dylan’s final round of chemo has begun. If everything goes as planned, we will leave room 1266 and Swedish Hospital on Saturday and never return to the 12th floor.

Our routine hasn’t changed in our last three visits, I set up the room, run out to Jimmy Johns and pick up sandwiches while the IV nurse connects Dylan’s port, and I return before the IV nurse has left the room. One of the pleasant surprises upon our arrival was that Dylan’s nurse for the first two days was going to be Kelly. She had been his nurse in the first round and a beacon of hope and help in those early days. I watched Kelly hang four chemo bags on Dylan’s IV tree and we both teased Dylan about his big plans to get home so he could play video games and then it started, the chemo from round four began its gradual movement from the clear limp bags into the rubber chest port beneath his skin.

Tradition dictated that we take a few laps around the ward while chemo began so we got up to walk four laps around the 12th floor but by the time we hit the third lap Dylan was really struggling. “This stuff is kicking my ass,” he said about the chemo cocktail surging into his system. We cut the walk short and he spent the rest of the day sleeping and eating. He has complained of feeling nauseous, but it must be the type of nausea that makes people eat full bags of Cool Ranch Doritos after devouring a foot long sub.

It is hard to remember the rawness I felt in the first few days in this room now that everything is so “normal,” but, once again, as we walked laps we ran into people huddled in corners crying into cell phones. It is my nature to want to reach out and comfort these people and to say, “It’s going to be okay,” but the last thing these folks need is a strange dude who looks like a homeless Walt Whitman giving them a hug, and, sometimes it isn’t going to be okay. Sometimes the doctors can’t stop it.

During this round of treatment Dylan gets steroid eye drops every six hours to prevent the chemo from permanently damaging his eyes. One would think getting a single drop into someone’s eyes would be easy enough, but Dylan is one of those people who cannot hold his eye open while another person squeezes a drop into this eye, so instead of a 30 second treatment these drops turn into the Manhattan Project. I pull his eyelids apart with my thumbs, the nurse moves in for the drop, and Dylan squirms like a dog being force-fed a bad tasting medicine. We are hitting about 50% of our drops, the rest end up on his eyelids making the lids extra slippery and difficult to hold open. I suggested some Clockwork Orange eye-opening tools to help but Dylan said no.

We ended our first night with a few poems: Mark Doty’s The New Dog, Gary Snyder’s Maverick Bar, and A. E. Housman’s Terrance This Is Stupid Stuff from Shropshire Lad. I hadn’t planned on reading any poetry this round, but the poems, like everything else yesterday, fell into place and Dylan requested poetry. The New Dog is a poem about the death of Doty’s partner and their new dog. The new dog is a blur of unlimited energy and saliva, but Doty’s partner can barely raise his hand to pet Beau. The comfort Beau brings Doty and his partner reminded me of our dog, Steffi. Steffi has been with us since Dylan was a toddler. She now has trouble standing on our wood floors, can’t see through her foggy eyes, and has difficulty eating hard food. She sheds enough fur to make Andre The Giant a sweater each day and is constantly in the way no matter where she sits. We all know the right thing to do is to take her to the vet and put her down, but she has been a very important emotional support for all of us during difficult times and there is enough hippie in me that I believe she needs to see Dylan all the way through this thing.

Housman ends Terrance This Is Stupid Stuff with a tale about a king, Mithridates, who gives himself small doses of poison to prevent himself from being poisoned by his enemies. I always loved teaching this poem for several reasons, but I usually focused on the idea that what Housman is saying is that difficult poetry and sadness in small doses won’t kill you. That isn’t what I got from it this time, not as I read it to my son who was taking in slow doses of poison to stay alive.

It is Wednesday morning. We are a few days from finishing. Dylan is strong. His sense of humor is intact. The end of the longest journey is in sight…I hope.

Axe Handles

A few days back, when Dylan’s throat was inflamed and any movement caused back pain and headaches, I said to him, “You know I’m really proud of how you have been brave through this whole thing.”

“I’m just laying here. I haven’t been brave,” was his response.

What is bravery? Is bravery getting up to brush your teeth when you can barely stand, all of your bones ache, and your throat feels like it is filled with hot rocks? Is bravery walking on the 12th floor with a bag of brown chemo drugs hanging from your IV tower? Is bravery losing 45 pounds and announcing you are going to start a weight loss website extolling the virtues of chemo? Is bravery taking 5 milligrams of Oxycodone instead of 10? Is it eating instead of getting hooked up to another IV bag? I think so. I think some of the bravest people I have ever met walk the 12th floor pushing an IV tower in yellow socks. (Swedish has color-coded patient-risk by socks: green socks=not going to fall, yellow socks=maybe I’ll fall and get hurt, red socks= get back in bed.)

Hospitals are places where people are brave each day. I have always known this, but it isn’t something I spent much time thinking about until faced with it. There is a reservoir of bravery stored up in each of us, in The Things They Carried by Tim O’Brien, he says he thought courage was like a bank account, he could make deposits by avoiding courageous acts, and when he needed it he could make a courage withdrawal. O’Brien comes to the conclusion that courage isn’t like that at all, you cannot store up more courage by saving it, by setting it aside, instead courage grows as it is used like a muscle. Cancer patients exercise their courage muscles each day. People who face potentially terminal illnesses are often told that they will come out on the other side of this trial a stronger person, which is true for those who survive, but there are people who fight and do not survive.

Yesterday, Dylan and I made the trip to Seattle for a blood draw and doctor visit. We had not been to the Arnold Tower Cancer Clinic portion of Swedish before so we got to town early and went looking for a place to eat a late breakfast. Dylan’s appetite has returned and he is finally gaining instead of losing pounds, but he is one of those visible chemo people: Gray, bald, and thin. We went to a small, clean café on 12th Ave to have something to eat. The waitress greeted us, and found a seat for us in the empty café. I could feel her nervousness. Chemo people are fragile and I didn’t help much when I said, “We need a safe meal. He is undergoing chemotherapy and can’t have anything undercooked or raw.” There were lots of options on the menu but Dylan wanted to be careful so he ordered scrambled eggs (well-done), 1/2 a baguette, and french fries. He wouldn’t risk coffee, water, or anything not assuredly germ-free. I talked him into some monkey bread and soon he was eating and enjoying food again. It had been five days since he felt so bad he wouldn’t eat: He had a headache, his spine hurt, and his throat was so raw he had difficulty talking. That night I read him some of my favorite poems. I started with Jane Kenyon who had written poetry right up until her early death from cancer and Let Evening Come is still one of my favorites. I talked about how brave it was for Kenyon to continue to write until her death. Kenyon’s writings reminded me of Stanley Kunitz who was still writing as he pushed past 90 years old, so I read his poem Haley’s Comet. For some reason, Haley’s Comet reminded me of Gary Soto’s poem Saturday at the Canal, so I read that one next. We (mostly me) talked about the feeling of being stuck somewhere when everyone else is leaving or moving on. Dylan’s college plans and work at Peninsula Mental Health as a Peer Support Conselor have all been placed on hold as he fights towards being cancer free. Life will wait for him to catch up and his battle with cancer might take him in a different direction, but for now his plans are going to have to wait. The final poem of the night was Gary Snyder’s Axe Handles. Dylan remembered the poem. I had a copy of the poem printed out next to my computer for many years to remind myself that I was an axe handle. (This statement will make no sense unless you read the poem, so read it. That’s why I linked it. Don’t be a poetry hater.) When I finished reading Axe Handles, Dylan said, “I get it. I remember that poem, and now I get it.”

That evening of poetry now seems long ago. As we went through check-in at the clinic, Dylan was worried about having a temperature, or a low blood count, or anything that might cause him to be admitted back to the 12th floor. His temperature was normal, he had gained another pound, and when the doctor finally came in to announce that his numbers had jumped from 1,800 to 20,000 we were overjoyed. Dylan was out of the danger zone. He could eat whatever he wanted. He didn’t need to take any meds. He could lick the sidewalk if he wanted to (well, maybe not). “You are doing great. Really good,” Dr. Pagel said. “So, let’s get started right away on round two. How does Monday sound?”

“This Monday?” Dylan asked.

“Yes.”

Dylan looked a little shocked, we had been prepared for March 6th, not March 2nd. “How about Tuesday?”

“Tuesday works for me,” Dr Pagel looked at his calendar. “Yep, let’s do it Tuesday. It’s going to be about two weeks and we are going to kick the crap out of you again, but you are young, you are strong.” And here is where I wanted to add, “You are young, you are strong, you are an axe handle.”