Month: April 2015

The Last Laps

imageI 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.

Completing the Circle

It hit me this week. It was the little things, the stack of clean clothes I thought about moving into the closet but never did. The To Do list that remained undone. The bathroom scale reminding me I haven’t been to the gym in a week and a half. The empty suitcase that remained by my bedside since returning from Swedish Hospital, and a pile of ideas stuffed into my head that I just haven’t been able to unload. I can’t read anything too long. I can’t concentrate. I noticed it when I stood in my closet staring at my stack of clothes I had not separated into shirts, pants, and shorts; the piles remain unsorted because everything is undone at this point.

I could probably get away with saying I’m tired, but that isn’t it. Depressed? Maybe a touch, but not that either. Like all emotions this one is hard to put a finger on, or explain in words because it is not one thing.

I’m leaving loose ends because I don’t want to go back, I want it over now. I don’t want to watch Dylan dip down again. I don’t want to smell the antiseptic hallways. I don’t want to hear the click of the IV pump as it pushes the chemo into Dylan’s port. I want to jump ahead one month and be done with all of this.

Instead, I will pack the empty suitcase, hopefully for its last trip to the hospital where Howie Myers was born, and Dylan will complete his final round of chemotherapy. We will have come full circle.

Questions will remain after we are done, but life will open up and we will move out of the rounds of chemo and back into the linear world where time is measured by the sun’s rotation and not by the amount of fluid left in a bag.

Last week, when Dylan and I were in Seattle for a doctor’s appointment, Dylan said, “I have finally been able to get the weight of dying off my shoulders.” He went on to say that early in his treatments he would put his hands on his abdomen looking for soft spots like a TSA agent searching for cancer. Each abnormality, each bump, was something he feared. It meant the cancer was winning. He never said anything about this because most of us keep our deepest fears packed tightly inside.

Death is something we really hadn’t really talked much about in the past three months, which probably sounds odd, but I think it is normal to ignore those things we fear. It would be a lie to say that death hasn’t been on my mind through this whole thing but I haven’t talked to Dylan about it much. Talking about it would be bad luck in my mind. I do know there is no scientific evidence proving the discussion of death will make someone more likely to die, but what does science know when it comes to luck?

I told Dylan that death was something I feared much more when I was his age. I had so many things I wanted to do when I was 20, but now that I am moldering like blue cheese I have had the chance to check a lot of boxes on my bucket list. My death isn’t something I spend much time worrying about these days, I have been very lucky.

When I was in high school, I worked in the local cemetery. (The answer to your first question is: “Yes, I did bury people.”) I dug graves. I mowed the grass. I edged around the headstones. I became very good at looking at the date of birth and death and figuring out how old a person was when they died. It didn’t scare me to work there. It was a job. When there were funerals we got to sit in the garage and talk about Van’s instant hot water and Romero’s hot peppers, so I liked funerals. During the summer, we could have three funerals in a day. I learned to cut sod, to sharpen mower blades, and everything was pretty normal until my friend Jeff Hess was killed in a car accident.

Jeff was a huge Larry Bird fan. I hated Larry Bird. My team was the 76ers and each year Larry Bird and the Celtics would knock the 76ers out of the playoffs, except for 1983. In 1983 the 76ers won. I had waited for this moment for a long time and so when I ran into Jeff outside of the high school gym, I gave him a ton of crap about how Larry Bird sucked. I remember the moment because it was the last time I talked to Jeff, a day later he was dead.

I took the day off from work at the cemetery and went to the funeral. When I got to the cemetery I knew the guys I worked with were in the garage talking about Van’s instant hot water and Romero’s hot peppers. I was outside. I stood in the back of the large crowd, but I could still hear Jeff’s mom as she cried out in that deep, distressed, guttural moaning sound reserved for mothers at funerals. After the ceremony the guys probably came out of garage and folded up the chairs, rolled up the Astroturf, lowered Jeff’s casket into the vault, sealed the vault, and piled five feet of damp earth on Jeff’s grave. I spent the day wandering around with friends not really knowing how to act when someone you know dies.

It took about two weeks for headstones to arrive and I was at work on the day Van placed Jeff’s headstone.  Van always made a big production of getting the headstone just right, and because I thought Van was a horse’s ass, I thought all the extra efforts he took to place the headstone were done to bring attention to himself, but now I know that it had to be just right because when things need to be permanent they have to be done perfectly, or as perfectly as possible for this imperfect place. It wasn’t a large headstone, but it had a ceramic photo of Jeff in a baseball uniform centered between his name, birth and death date. There he was frozen in time. He would never age. He would never have a family. He would always be there, on one knee looking at the camera ready for action. I wondered how his parents made the decision to put that photo on the headstone. Did they dig through a pile of photos and pick that one, or were they so consumed with pain that they just picked the closest one on hand?

I still mowed the row where Jeff was buried. I edged around his headstone and life went on. Thirty years passed and I still think of Jeff on that headstone when I think about how death became real to me, when it wasn’t just something that happened to old people. These days, I wonder how worn and washed out his headstone is.

About ten years ago, Dylan and I stood in a long hallway of Roman sculptures in the Louvre. I bent down and whispered in his ear, “At one time these people were the most important and powerful people in the world, and now, I don’t know who any of them are.” I don’t know if he remembers the moment, most of what the kids remember of our trip to Europe relates to me making them walk too much and telling them we wouldn’t be buying that, but I remember the moment because in that moment I remembered all the headstones I passed by each day as I mowed the grass at the cemetery. After awhile people stop coming to visit the headstones at the cemetery, no matter how grandiose the headstone is, or how important the person was. (Jim Morrison and Oscar Wilde might be exceptions. I’d toss in Victor Noir as my favorite.)

Dylan and Oscar Wilde. I take my kids to all the cool places.

Dylan and Oscar Wilde. I take my kids to all the cool places.

People who die drift away from us, it is the only way for us to continue living, but the names of the dead are the ghosts that live on in our heads. My head holds the names of the people I have known and when I die those names will go with me. There are some ghosts who haunt me more than others, the ghosts of the young lives cut short: Jeff Hess, William Schwab, John Gibson, Jerome Green, Lance Osborne…

Almost three months ago, I started writing about this long journey in hopes of keeping Dylan alive. I can admit this now. I wanted a record for Dylan to read later in his life, but I didn’t know if he was going to be there to read it. I didn’t know if we would make it to the final round, but today we will leave home and go to the 12th floor at Swedish hospital.

He is strong. He is ready and he has been kicking some cancer ass. Let’s ring the bell to signal the end of chemotherapy and complete the circle.

Dylan with some unknown Romans.

Dylan with some unknown Romans.

Good Days

Everything I knew about cancer I learned from movies. Brian’s Song was probably the first “cancer” movie I ever watched and it confused me. (If you have not seen Brian’s Song it is about a professional football player who is diagnosed with cancer. Spoiler alert: James Caen dies. Billy D. Williams gives the first locker-room speech where guys were allowed to cry while watching.) Here was a healthy, athletic guy, who was suddenly sick and then he died. It didn’t make sense. Healthy, young people didn’t die, old people died. People who went to Vietnam died. People who played football for the Chicago Bears were indestructible.

What was known about cancer back in the Brian’s Song days wasn’t much. We treated cancer the same way we treated gun shot wounds to the leg during the Civil War, brutally. I don’t know if people survived cancer back then, it doesn’t seem like anyone ever did. They got sick quickly and then were gone. I remember a girl in my dad’s church showing up one Sunday and playing with all of us and then next week her mom noticed her belly was swelling and her pants didn’t fit. It was cancer. I never saw her alive again. I do remember my father coming home from visits to the hospital and talking to my mother in hushed, not-for-kids’ voices, and then there was a funeral. We went. I don’t remember anything about the funeral other than there was a small, white casket. I don’t know what my dad said to explain why children die before their parents, there isn’t any solace in situations like that. What I do remember is that we went to the family’s house after the funeral, there was food, and a pool table. I didn’t know anyone who had a pool table in their house and I really wanted to play. I asked my mom if I could play and she said it wasn’t a good time to be knocking pool balls around the huge green table. We were eating, why was pool wrong? Eating seemed more wrong to me? The rules of old people seemed especially silly to me that day.

Recently, I have wondered if that girl would survive today. I believe she would.

The doctors and nurses tell you when cancer treatments are starting that there will be good days and bad days. We have had a solid week of good days. Dylan has slowly gained strength. He has gone from full-time couch potato, to part-time couch potato over the week. Mornings are still a little difficult, but mornings have always been difficult for Dylan. I know his strength is coming back when I go down to get my morning cup of coffee and he isn’t sleeping on the couch; he had enough strength to climb the stairs and sleep in his bed.

The best part of this week has been his ability to be out and about. He hasn’t been able to be out in the sun very long because of sun sensitivity, but he can now do normal things for short shots and as the week has gone along the short shots have gotten longer and he is less exhausted afterward. The week started with a trip to the Boys and Girls Club so Dylan could attend a fundraiser for a kid who had just finished up cancer treatments. It had been a tough day up to that point, but he wanted to go, so we did. It was a good decision. A few days later, I took him to have lunch with some of his coworkers from Peninsula  Mental Health where he was working as a Peer Support Specialist before his diagnosis. He had been pretty tired before going to the lunch but came away from the meeting simply glowing. We drove home talking concretely about the future instead of broad abstract strokes, Dylan began talking about how his plans were slowly coming into focus, and how his goals have been altered by the past two months.

Each evening there have been walks. The walks have gotten progressively longer each day but they have always included carrots and horses. There are some horses in a pasture near the end of our street and they like carrots. (Yes, I live on a street where people have horses, sheep, and chickens.) Dylan is scared of the horses, which is funny in some ways, and understandable when the horses start crunching on those carrots it sounds like they are cracking bones. The horses see us coming and run over to the spot where we hand off the carrots. We break the carrots in half and feed the horses.

This weekend there was a fundraising car wash at the Windermere Real Estate office arranged for Dylan and it was a huge success. I got sunburned, we raised $1300 for his hospital bills, and Dylan was finally able to meet Donna and Destiny (the mother and daughter team who have done an incredible job of fundraising for him). There are times when I realize how lucky I am to live in a small community.

I know we have five more good days. Monday through Friday are going to be good this week, but once Saturday hits the looming final round will hang over the last few days of freedom. The last round promises an end, but it also will bring an anxiety we have not felt since our first days in the hospital. We will be back to the unknown. Did it work? Is Dylan cured? Are we done with all of this?

Last night all of us were sitting on the couch. I had the remote and was going through the recordings on the DVR and organizing and deleting the offerings on the recorder. I managed to get rid of about half of the nonsense and was pretty proud of my accomplishment. “Look at that,” I announced, “isn’t that better?”

Dylan said in a slow caveman voice, “I am Dad. I deleted shows.” Everyone laughed at me and it was good, these were the good days, and we are so close to the end.

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…!!!

The Money End of Things (1,031 words that might kill your will to live)

Dylan’s treatment has lasted over 60 days now, I know this not because I have tracked all of this on a calendar, but because we have had our first phone call from someone wanting their money for services rendered. If you haven’t been through a hospital stay in the US, or live in a country where they assume medicine shouldn’t be a for profit institution, you might think that paying the bills is a matter of having the money to do so, but it isn’t just that. We have been very fortunate that people in our community have been very generous and we have a pocket of money we can use to begin paying bills, but the real confusion comes in the multitude of bills delivered to our house.

When my wife took Dylan to the local hospital emergency room after the Superbowl we entered a maze that is more confusing than the one Jack Nicolson ran into in The Shining. Most of us assume we know how to get out of this maze but it isn’t as easy as one might think. It is a complicated maze, a confusing maze, and a frustrating maze. (Get ready for the most boring post of all time, that is unless you are an accountant or sadomasochistic.)

American insurance companies negotiate prices with hospitals and doctors for services. If they all agree on the price structure then they become what is known as “in-network,” if the doctor or hospital don’t like the negotiated price and want more they become what is known as “out-of-network.” Generally,  doctors who work within a hospital agree to be covered by the agreements by the hospital and are therefore “in-network” but that isn’t always true.

Insurance companies will set up “out-of-pocket” maximums for both in network and out-of-network providers. For our insurance the “in-network” maximum we will have to pay is $5,500. Once we pay $5,500 to “in-network” providers the insurance company takes over and pays the rest of the bills. The out-of-pocket max for “out-of-network” is $11,000…small print “with no cap.” No cap means that the cost for out-of-network providers will be our responsibility at a 50% clip. So, in other words, the cap for out-of-network providers isn’t a cap at all, it is more of a sun-visor. These “out of network” providers are the real wild west of this whole thing, because as far as I can tell, they are charging whatever they like and their prices are like car prices: open for negotiation.

Confused yet? Okay, let me add one final bit to the madness. When you take a sick child to the hospital that is “in-network” one would assume they would know how your insurance works and who they should contact for “in-network” services. Nope, that would make sense, like when they give you drugs and check to see if you are allergic to the medicine before pumping it into your system, but that doesn’t happen. Instead, services are provided and then bills are created. Whether those bills become the responsibility of the person getting the care, or the insurance provider, depends on the “in-network/out-of-network” thing. The number of moving parts in a hospital make it difficult to keep track of your financial situation as well as your medical situation. This isn’t the doctors’ fault, it isn’t the nurses’ fault, it isn’t really even the hospitals’ fault, in fact, I don’t know who is to blame for the confusion, but I know that most bankruptcies in the United States are medically related.

Still reading? (They have drugs for your condition. I don’t know if your insurance will cover them or not.) Here is the part that makes me mad. One would think that since you went to one hospital and were then transported to a second hospital, you would get two sets of bills with a total amount owed. Ha ha ha ha, that would make sense.  After the dust has cleared and the bills are starting to age like blue cheese, it is now time to dig through the hundreds of bills and figure out how to pay for everything. This isn’t as easy as it sounds because it isn’t just the hospitals who are billing, it is also individual doctors and services. For example, an ambulance drove Dylan from Port Angeles to Swedish Hospital. I didn’t get to chose the ambulance. I didn’t request the transportation. The only thing I did was follow the ambulance to the hospital. It cost the ambulance $2,800 to travel 82 miles. It cost me about $40 including parking and ferry crossing. My insurance company will pay about half of that $2,800. (Again, this is not a plea for money, this is just to illustrate the insanity of the American medical system.) The bill says that it costs $77 per mile to drive an ambulance. That sounds excessive to me, especially since no medical aid was given to Dylan once he was in the ambulance. The hospital filled him up with drugs and packed him onboard. The ambulance drove Dylan to the hospital and did nothing else. Would I have been able to drive him to Swedish in our car? I don’t know because after I found out my kid had cancer I wasn’t thinking about how to save a couple bucks.

When I called the insurance company to talk about how all this works, they were very helpful but they continued to say something that I just don’t understand, “You should always check to see if the services provided are covered.” Really? I should do that every time? “Hey, guy about to poke a hole in Dylan’s stomach, are you in the First-Choice network? How about you technician standing next to Doctor Pokey? Is this MRI covered? Is this ambulance part of…” This line of thinking works when you are going in for breast augmentation, or having a knee replacement, but for emergency care it just doesn’t work.

I have always been a proponent of universal coverage. I know Americans believe that will lead to substandard care, waiting periods, higher taxes, and doctors who can only afford three BMWs, but I think anyone entering into a hospital for care agrees that something must change. I do.

Slow Times and Memories

Dylan spent most of yesterday waiting, we knew the chemo drugs were being mixed and readied for him, but Mondays are slower than other days. Maybe the weekend crew forgets to clean all the mixing gear and the weekday folks have to put the shakers through the dishwasher.  Dylan was passing the time by watching cartoons and surfing the internet and I was catching up on email and a few other work related items I managed to ignore while I was at home. Dylan’s counts were up again and he had moved out of nuetrapenic so he could have outside food and he wanted something other than what the cafeteria offered. I was not keen on eating in the cafeteria either since I had seen the lunch menu when I was picking up my breakfast special (eggs with cheese, hash browns, two pieces of bacon: $3.80). The menu proudly announced that it was Meatless Monday and then described the two options that would be waiting in the chafing pans at 11AM. I came back upstairs and told Dylan I would be eating out on Meatless Monday. While we were discussing the various options provided by the neighborhood one of the new nurses (Cassandra) suggested the Honey Hole. I had walked by the Honey Hole several times, it is right near Gay City, and assumed it was a location for cinnamon rolls or…well, let’s not reveal too much about what I thought the Honey Hole offered.

We looked at the Honey Hole’s online menu and decided on the sandwiches we would eat.  (Remember how the phonebook used to have menus in the middle of the book so you could call in and order? How did life exist before the internet?) I looked out the window to get a feel for whether I would need my rain jacket or not, the day started out damp but now the sun was out and the streets of Capitol Hill were alive. Just before leaving Dylan stopped me, “How far is it?”

“Not too far, it’s over by Alive and Well.”

“That’s a long way.”

I was touched, my son was worried about how far I was about to walk, what a great kid. “I’ll be okay.”

“I don’t want my food getting cold. Hurry up.”

The Honey Hole was jammed full of people when I arrived. I got in line, ordered, waited at the bar and then got my brown bag full of goodies. I hustled out onto the streets and made my way back to the hospital. About a block from Swedish, I saw a guy in a hard-hat pushing a large filing cabinet up the sidewalk on a wheeled platform. It seemed an odd way to move office furniture, but as I got closer I saw that they guy pushing the filing cabinet was one of the many homeless people who live around Capitol Hill. The homeless folks on Capitol Hill are very different from the homeless people in the downtown area. The downtown folks are far more aggressive and can be scary at times, but the Capitol Hill crew are an eclectic group. (The lady who asked if I was a Wookie is a good example of the difference between downtown and CH.) I have now been doing this cancer thing with Dylan for two months and in that time I have become familiar with the people and the areas they patrol. On one of my first walks in the neighborhood, I was approached by a guy in green pants a pink shirt and bleached hair. I was certain I was about to be asked to buy drugs, “Hey man. Hey man, wanna buy some art?” He asked as I walked by. I saw him later digging boxes out of a dumpster for his art.

As I approached the guy pushing the filing cabinet made space for me and said, “After you.”

I pushed the cross walk button and said, “I don’t think we are going anywhere too soon.”

“That’s funny. Too soon. It’s like a wave. Too soon.”

“Too soon?”

“Too soon, like a wave. You know?”

I haven’t seen a picture of puzzle master Will Short, but I doubt he pushes filing cabinets down the street but I felt like I needed to solve this puzzle before I could walk away from the guy in the hard-hat.

“Oh, like a wave…Tsunami. Right?”

He laughed showing off his missing teeth, “Too soon, too soon, tsunami…”

I was pretty pleased I was able to solve the word problem and made the final dash to get Dylan his food before it got cold.

As we ate our Honey Hole sandwiches, Sonja came in to say that the chemo had arrived and when we were done eating Dylan could start his treatment. The waiting was over and it was now time to get down to the business of chemotherapy.

Sonja and another nurse went through the routine of reading Dylan’s hospital bracelet and the chemo drugs to make sure he was getting the right bag of yellow liquid and then it began. It hit him hard. Within two hours, while the NCAA basketball game was on, Dylan was completely spent and curled up on his bed. I watched the game quietly looking over at him occasionally to see how he was doing. His arms were pulled tight against his body and he looked cold to me, so I pulled the covers up over his legs and he woke up to announce he was “hot as hell.” He rolled over and I propped his head up so he could watch the game, but he was only half interested. He put out his arm and demanded, “Tickle my arm.”

I touched his forearm lightly and tickled his wrist. A little at a time he became more aware of the world around him and woke up. His forehead was wet with sweat and I got a washcloth and rubbed his bald head down and then dried him off with a towel. He put the towel around his head and tucked it into his gown like a hood. I don’t know if he was channeling his inner Mike Tyson or his inner Cam Newton, but as soon as the game was over he said, “Let’s walk some laps.”

I helped him stand and we walked the halls. It had been a full day. A day that began with fear, a slow day, but a day that ended with unexpected bravery. We walked four laps, Dylan dragging his feet along the way, but fighting through each step. When we got back to the room, I set up my cot and we spent the remaining hours reading. I checked my phone one last time and saw that my dad had sent an email with a picture attached. I opened the picture and remembered, and tears filled my eyes. It seems like it was yesterday, but it was 20 years ago.

He is a little bigger these days, but with less hair.

He is a little bigger these days, but with less hair.

The Tiny Things

Last Monday, we were supposed to come in for a check-up and be told to go home and recover for a couple of weeks and then start the final round (this was what I thought would happen) but instead we were told to return Friday to complete round three. Our plans changed, which is no great tragedy, but when your child is going through chemotherapy there is a little spot reserved in your brain where you don’t want to go. It is the place you have reserved for bad news. I haven’t been there too often since we began this thing, but as I spent the last few days at home before Dylan would return to the hospital I went to that space in my mind and began to wonder if the doctors found something in his blood. Maybe there was a complication, maybe the tumors were returning, maybe things were not going great. I followed up each of these thoughts with, if something is really wrong they would tell us, wouldn’t they?

On Friday, Dylan and Cheryl came back to the hospital where Howie Myers was born for round 3.5 of Dylan’s treatment and I stayed in Sequim to go to a fund-raiser for Dylan’s medical expenses. Our small community has been very generous and one of the students at the school where my wife and I teach wanted to do a school project to raise money for a cancer patient. The student’s family had been touched by cancer several times and, coincidentally, while she was beginning her project my son was diagnosed with cancer so she asked my wife if she could raise money for Dylan. Her project has been much more expansive than we assumed it would be and I cannot imagine how much time and effort she has put into all the different aspects of raising money. We had hoped and planned to have our entire family at the IHOP take over to thank her. Instead, Dylan and Cheryl were in Seattle waiting to start chemotherapy and my daughter and I went to the pancake house to thank people. (Thank you, Destiny and family!)

Being on the big end of generosity doesn’t feel natural to me, it is much easier to be on the tiny end of things, the end where things are given, the big end, where things are received is a tough adjustment because it isn’t where anyone really wants to be, but then I open my mail and see a line in one of Dylan’s hospital bills for MISC——$213,000, that’s a lot of miscellaneous. I’ll take all the tiny acts I can get. (Our insurance will pay most of Dylan’s bills, even the misc ones, so this is not a plea for donations.)

On Saturday, I caught a ride to Swedish from one of Dylan’s aunts (Joyce) who was heading to Seattle to do some whitewater canoeing. I was expecting to see Dylan hooked up to a bag of chemo, but his numbers were still low and instead of chemo he was getting red blood. This is when I spent a little more time visiting the part of my brain reserved for bad news. I wasn’t saying anything aloud, but now I was worried.

Dylan and I had planned on attending a David Bazan living room concert that evening, but Dylan’s counts were so low he needed to stay away from the world. He was bummed, but he was bummed about everything. The physical beating his body has taken has been tough, but knowing he was about to step back into the painful world of chemo made him look at the chemo bag as not half empty but half full. To pass some time we watched a little basketball on the laptop because the hospital TV did not get the channel for the Final Four and waited for the evening.  #SomeTragediesAreGreaterThanOthers.

When Joyce finished rowing down the river, she showed up to the hospital room to hang out with Dylan while Cheryl and I went to the living room concert. What is a living room concert? It is a concert that happens in someone’s living room and it is awesome. You buy a ticket online, you get an address, you show up to someone’s house, they check your name off, and if you are early enough you can get a great seat on a couch right next to David Bazan. Dylan and I have talked about going to one of these for a while, so I was a little sad that he wasn’t along for the ride, but my wife and I had a great time. (I think I had more fun, she was a little freaked out by the closeness of it all at first.) Bazan is heading across North America on a living room tour, so if you have the chance to see him you should.

When we got back we set up the cot in Dylan’s room and spent the rest of the night trying to sleep. Hospital cots are not super comfortable and sharing one with your wife when she is notorious for stealing the covers makes it even more challenging. (She really doesn’t steal the covers, but it makes her mad when I say she does.) After a pretty bad night of sleep, she headed back home early Sunday morning and I began nagging Dylan to eat, take walks, and shower. We have developed an advanced bartering system of bribes and deals to get things done. I will run out to get him a bag of Cool Ranch Doritos if he eats them with a sandwich from the cafeteria. I will rub lotion on his feet after a shower if I can say, “it rubs the lotion on the skin or it gets the hose again” while I massage his calloused feet. (Silence of the Lambs reference if you don’t remember.)

While I was running down to the local QFC to get a bag of Doritos and a blue Gatorade (Is blue a flavor?) I was struck by all the tiny things I notice now. When I first arrived at Swedish it was the big things I noticed, the macro. The layout of the buildings, the floors, the city streets outside the window, the faceless homeless people, and locations of various businesses. Now I notice the tiny things, the micro. The triangles of dirt left in the corner of the elevator, the three cigarette butts left on the cement bench just on the other side of the no smoking sign, the way the parking garage computer pronounces ticket “dicket,” and the little foil top to a Cadbury egg left on the floor by a guy in a blue tie.

The little things like blood counts that are 120 one day and 16,000 the next are the tiny things I notice now, so when Dr. Pagel showed up before 7am this morning, it was a tiny thing but it was unusual and I thought we were about to get bad news. He talked to Dylan a little bit and then asked if I had any questions. “We weren’t expecting to be back this soon, is everything going as planned?”

“Oh, yes. Things are going great. He’s responding really well. If he weren’t 20 he couldn’t do this regiment.”

I was relieved. “So does that mean he’s tough?” I asked as I poked Dylan in the arm.

“He’s 20,” Dr. Pagel said with a smile.

Both Dylan and I laughed, it was a tiny thing, but it was a good tiny thing. All the tiny things were heading in the right direction which means chemo will start today. We will watch the NCAA Final on a channel the hospital gets and we will wait as tiny drips of chemicals flow into Dylan’s body. A week from now, we could be back home and resting for the final round of chemo, that is if all the tiny things keep working out.

Round 3.5?

“So, we’ll have you come back and finish round three on Friday.”

Finish? Friday? I thought we were done with round three. I thought we would be home for rest until round four started. I was stunned. Doctor Pagel had just assured Dylan that everything was going well, better than planned, yet, I couldn’t help think that the blood draw had revealed something sinister, but I wasn’t thinking straight. I hadn’t slept much. The blood results hadn’t been uploaded to the computer yet, so somewhere in all my busyness I must have misunderstood the end of round three.

My internal calendar moved ahead to Friday. Oh, that’s when the fundraiser was happening. We had hoped Dylan could make an appearance and thank the people who were organizing it, but now that wouldn’t happen. Oh yeah, that also means Dylan won’t be able to attend the David Bazan living room concert and he was really looking forward to that…

Anyone who has been through, or had a family member travel through cancer treatments probably knows the truth of it. There are no guarantees. Plans for the future are lines written in water. The moments when things are going well are moments to live in, the future will happen and all the planning in the world isn’t going to change what might happen. This has been a difficult adjustment for our family. The center of our family has become Dylan’s cancer treatment and everything else circles around that. It’s not fair, but it is the only way to manage our lives at this point.

This means my daughter ends up as second fiddle in our quartet, which isn’t fair, but we have tried to open pockets of time for her to be the center of our universe and she has filled those pockets with activity. It was one of the reasons I was tired at Dylan’s appointment on Monday morning, Emma had filled my Sunday with Emma activities. There was a brunch with Fresh Jess, coffee with Grace Kelly (Public Relations, not the Queen), and an evening of job shadowing Sunday Night Sound Sessions at KUBE. It was a full day of driving around Seattle and spending time with Emma. She is an amazing kid who never seems to wonder if she should do something, she just does it. Her nickname in our family has been Moneypenny (the secretary who always orders James Bond around), because she is the most organized and demanding member of our family. She can remember the address of a hotel we stayed at in San Francisco five years ago. Want to know the name of the woman you met at a party? Ask Moneypenny, she’ll remember. (Moneypenny hates her nickname, which only causes Dylan to take it up a notch and call her Moneypenny with a Scottish, Sean Connery imitation that really is pretty spot on.)

Emma and I spent the time between her appointments wandering around. We know how to fill time in places we both enjoy: used record shops, REI, and bookstores. It was a really good day for me because it was Sunday and street parking was free. To me, finding a free parking space is like finding a five dollar bill on the street, so I spent the day finding free parking and sitting in coffee shops reading as Emma had her meetings.

When I picked her up at midnight from the radio station, I was pretty tired, but it had been a good day filled with activity and too much food. I always think about how I’m going to work out while eating apple pie, but then I get home and decide that apple pie is probably good for me and I don’t need to work off apples.

I woke up early the next day and got Dylan ready for his appointment. We had an 8:30 blood draw, 9 am doctor’s appointment, and then a spinal shot. When would the spinal happen? Nobody really knew, but soon. Soon is different in the hospital than it is at my house, at my house soon is in about 15 minutes, at the hospital soon is either right now or five hours from now. The good news was that the spinal happened and we were able to pack everyone up and head home that day.

Tomorrow at 10am, Dylan will be back on the 12th floor of the hospital where Howie Myers was born. The fifth and sixth floor of Swedish is for babies, the fourth floor is radiology and surgery intake, the 8th-10th floor is surgery recovery, and the 12th is oncology and overflow. Starbucks is on the ground floor. The cafeteria is in the basement. I don’t know what is on the 2nd/3rd/11th floor, but I do know that the building is filled with pain and joy. I also know there is a bed waiting for my son and there are people there who will welcome him with smiles and hugs. Things are good at this moment and that’s all that is important.

A Happy Place?

3/27/15: I sit here watching Stephanie doing the morning blood draw. It is just a little before 5 am and Dylan doesn’t even really wake up, he rolls over when Stephanie comes in so she can access his port. He automatically raises his left arm so she can put the blood pressure cuff on his arm and holds up an index finger for the heart-rate sensor, it is a dance that is so automatic now he stays asleep through it. When she leaves with his blood and vitals Dylan is already back into the deep sleep of exhaustion.

These routines have become the Lethe waters of forgetfulness, these routines have numbed me to the point that I forget to be terrified, or even afraid. There are times when all of this feels normal, when I look forward to waking up, making a cup of coffee, and sitting here in the dark listening to Radiohead on my iPod and writing.

We have been through it all, there isn’t an unknown treatment on the horizon, and this round went so smoothly that yesterday as Dylan and I waited in the surgery intake room–a crowded room that is generally noisy and unpleasant–for his third or fourth spinal shot,  I was surprised that Dylan was getting teary-eyed. I had been more concerned about the poor timing of the operation, the NCAA sweet sixteen had just tipped off and now I was downstairs with no way to see the games.

Dylan was frightened, which is the normal reaction for someone who is about to have his spinal column accessed with a big needle and shot full of a poisonous chemo drug, but I was somewhere else, I was upstairs thinking about the West Virginia and Kentucky basketball game.  Dylan asked me if I had a “happy place,” a place in my mind I retreat to when things are tough. I didn’t. I asked him about his place. He couldn’t talk about it and tears began leaking out of his eyes. I did my best to talk about a few of my favorite places, but my emotions started to crawl out of my happy place and into my eyes also. When the intake nurse came over to see how Dylan was doing she was probably a little surprised to find us pretending not to cry behind the thin curtain. When she asked if there was anything she could do, Dylan requested drugs like he was Pablo Escobar, “I want —— and ——.” (I don’t remember what the drugs were, but Dylan has become a great self-advocator in our time in the hospital.) The nurse left and came back a few minutes later with two syringes and five minutes later Dylan was talking long and slow like Tommy Chong had taken over his body.

When the operating room became available, I asked Dylan whether he wanted me to wait downstairs or back in the room. He didn’t care, the drugs he ordered didn’t care either, so I told him I would wait in the room so I could watch the game. I found my way up to the room and turned on the game, West Virginia was already so far behind it wasn’t worth watching and this gave me the perfect opportunity to reflect on how stupid I am. (I may not have a happy place, but I certainly do have a sad place where I can mentally flog myself for being an idiot.)

When Dylan was wheeled into the room I helped him into his bed and elevated his legs on the hospital bed, we had been told to keep him in a horizontal position for four hours after each spinal shot to avoid headaches. The fear of the spinal shot had worn off and we spent a little time talking about his happy place now that he was past the emotion of the moment. He told me about his place, Dylan said he is not alone in this place, but with a good friend (Gabe) who has been a guardian angel in Dylan’s life. As he told me about this place I was wrapped up in the serendipity of many of the recent events in our lives. I don’t know too many people named Gabe, but one of the first people we met while walking the 12th floor was a 28 year-old guy who had the same form of cancer Dylan had, his name was Gabe. Gabe was just finishing his third round of treatment and talked to Dylan about what to expect as he went through chemotherapy. As Dylan described his happy place and how his good friend Gabe has been there both physically and cognitively throughout difficult parts of his life, I was thankful for the good fortune life has provided to prepare us for this time.

Dylan was still a bit tired and a little dopey from his drugs and wanted to rest, so I got him his iPod and headphones and he zoned out. My wife arrived for the beginning of her Spring Break and since Dylan was zonked out we ventured out to get a bite to eat with the promise we would return with food for Dylan. (He has moved into the “I won’t eat cafeteria food unless they make me” phase of his hospital life.)

I picked a place to eat dinner where I could watch the basketball game because I have a basketball addiction this time of year; I am willing to admit it, but I don’t want to be cured. The pub was full of people and we found an empty table next to the only three people in the pub not watching the game. Instead of watching the game the trio spent their time talking about how stupid basketball was and then arguing about which Christian Bale movie was his finest. The basketball hating was one thing, you don’t have to like basketball, there is no law stating you have to like basketball, but if your bill is paid and you are done eating and drinking…you could leave. The worst part of listening (the pub was loud and the trio was yelling so they could hear each other so I really wasn’t eavesdropping) to the Christian Bale discussion was that all they talked about were the Batman movies. They didn’t talk about American Psycho. They didn’t talk about The Fighter. They didn’t talk about American Hustle…and they never mentioned The Machinist (his best work). When my bill arrived, I paid it and left immediately even though the basketball games were not over so I could escape the next conversation which would probably be something like greatest Michael Jackson songs. (Ben or ABC, for the record. Yes, his songs while he was in the Jackson 5 count.)

After leaving the pub we walked over to Dylan’s favorite sandwich shop, picked up a big sandwich and headed back to the room. Dylan was sleeping but woke up and was hungry. He still couldn’t sit up, so we draped a towel over his chest and let him make a big mess while he ate his sub. Seeing him eat without discomfort is always heartening.

We knew if his blood samples were good we would all get to go home in the morning. Joanna said she would drop by first thing and let us know how everything looked, so we went to sleep that night hopeful that we would be sleeping in our own beds the next night.

Around 9:30 AM, Joanna came in and said everything looked good. We should head home. We would have to be back on Friday for another spinal shot and check-up but Joanna left us to pack up and hit the road. Driving home gave me a chance to think about my happy place. Before all of this cancer stuff, my happy place probably would have been a beach in New Zealand, or a mountain lake, but these days my happy place is the moment I crack open the door to my son’s bedroom and see him sleeping comfortably in his bed. That is my happiest place.

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