Category: The Longest Journey

A Year

This morning I should be working on a difficult section of my novel, but after yesterday, I can’t work on the fictional difficulties of Paris in 1925. Instead, I’m drawn back into the past by an odor in the bathroom of the Swedish Cancer Center.

The dates December 21, and June 21 will continue to be circled on our calendars for a few more years. These are our appointments. Every six months, just enough time to believe things are normal, just long enough to forget about the five months on the 12th floor. Every six months for five years, we will venture back to the cancer center to see if Dylan is still healthy.

I could lie and say that the days leading up to these visits are like any other days, but they aren’t. I still worry. Now, I have 100 other things I can blame for my detachment and moodiness, but when I examine it in my mirror where “things are larger than they appear” I can see that the last two weeks have been a building feeling of dread. I’m not really even aware when it is happening, I just have an angsty feeling that can only be compared to my 7th through 10th-grade years: my Dungeons and Dragons years.

The one thing about dealing with cancer is that it wipes away all the difficulties of life. Regular adult life is stressful because there are hundreds of things; cancer life is one big thing.

We arrived at the Swedish Cancer Center, Dylan checked in, and I went down the stairs to use the bathroom. I opened the bathroom door and the smell hit me. I don’t know if it is the cleaning solution used to clean the bathrooms, or the disinfecting soap next to the sinks, but whatever it is it has a distinctive smell that my brain connects to a time and place. The entire 12th floor at Swedish smells like it. The bathrooms, the halls, the showers, the family room, the nurse’s station all have the same bitter, soapy smell. I have heard that smell has the strongest connection to memory and I believe that is true.

One of the things that happened in the last year is that we have all gotten tattoos. We are not a tattoo family, but as Dylan was going through chemo we all agreed that when it was over we would get some ink. My wife got a pink lotus flower on her wrist, Dylan got an Ouroboros (snake eating itself) on his ribs, Emma got a “You are here” Google Earth marker on her wrist, and I battled between two quotes that I love. Thoreau’s, “How vain it is to sit down to write when you have not stood up to live,” or Fitzgerald’s final line in Gatsby, “So we beat on, boats against the current, borne ceaselessly into the past.”

In the end, I went with Thoreau’s quote on my skin, but Fitzgerald’s words have been living in my head. As much as I want to move forward and forget parts of the past I can’t. I will forever be pulled back to the 12th floor of Swedish.

Dylan drank his banana flavored barium, was called back to scan area, returned to us 15 minutes later, we went upstairs for Dylan’s blood draw, and then had three hours to kill before our appointment with Dr. Pagel. We wandered around Capitol Hill, ate lunch, bought some CDs and books, and then went to the 10th floor of the cancer center. The last 20 minutes are the hardest. There is waiting and it is quiet. Then Dr. Pagel came in and said what we all wanted to hear, “One year is a big milestone. Everything is great. Your blood is great. Your scan is clean.” We talked about Dylan’s plans for the upcoming year; he’s off to Western Washington University to complete his BA.

We left. We had planned on celebrating at a fake German beer hall, but when it was all done none of us felt much like doing anything but crying and driving home. So we did.

There are times when last year seems like a nightmare that happened to someone else, but here we are, all of us pulled into the nightmares of the past paddling as fast as we can to make it beyond the bar and into the rolling ocean waters of the present. Someday, someday…

Blue Is My Favorite Color

July 7th was the date circled in red on the calendar, actually the date wasn’t circled, no one in my family needed to be reminded what was happening July 7th. We hoped July 7th would be the bookend to this collection of stories that started on February 3rd; July 7th was the day for Dylan’s CT-PET Scan. I woke Dylan up yesterday at 4:45 AM for our trip to Swedish Hospital so we could make the 7:05 ferry to Seattle and be at the hospital by 8:15 for Dylan’s scan. The scan would probably take two hours, then there would be a blood draw, and finally, at 2 PM we would meet with Dr. Pagel. It looked to be a long, stressful day.

The past few weeks have not been easy. Dylan no longer looks like a chemo patient. His curly brown hair has been replaced by soft, blonde hair (which he hates), and he is back to fighting weight. All of us have retreated into the patterns established by years of practice: No talking about angst, No Discussions about the frightening “What ifs”, Keep your nightmares to yourself and watch another episode of —————–. Outwardly, I have tried to look strong and unconcerned (this is in the job description for being Dad) but my insides have been wound up tight like the innards of a golf ball.

Dylan had to fast for 12 hours before the procedure so when I woke him up and got him out of bed he was his normal, charming 4:45 AM self. We loaded up the car, I added a few podcasts to my iPod and we took off.

My mom asked a few days earlier if I needed her to come along for company, I told her I would be fine, this is when she started crying on the phone. I’m not revealing any family secrets here, but my mom is wound up like the innards of a golf ball 24/7/365, and I wasn’t sure I needed to add any stress to my day, but then I had an epiphany, this day wasn’t really about my stress level and having my mom along would save me about 15 text messages, four phone calls, and I wouldn’t have endure the shame of not knowing the answer to some medical question she had about Dylan’s condition. I ended up calling her back and asking her to come along with us.

At 5:15 we stopped to pick my mom up and we were on our way. As we crossed the Hood Canal Bridge we could see the sun rising over the Cascade Mountains. The atmospherical smoke from local forest fires gave the sun a blazing, unnatural, cartoonish red color, “What’s the saying? Red sun in the morning…is that a good or bad thing?” I asked Dylan.

My mom remembered the saying, “Red sun in the morning sailor’s warning…” which wasn’t really reassuring, but I have never trusted in those sayings when they didn’t confirm what I already believed so I chose to ignore this stupid saying.

As we approached the ferry loading area we were forced to pull off to the side of the road. Pulling off to the side of the road meant the ferry loading area was full. This is not unusual during the summer because everyone wants to visit where I live during the summer because of its awesomeness. Tourists clog up my ferries with their cars, take pictures of everything, and generally make my peaceful life 3% more difficult. It was 6:30, and we were plenty early to make sure we were on the 7:05 ferry, but then the guy on the radio announced one of the ferries on our route was out of service. This was not good. I called the help line, which should be called the “not much help line”, and talked to a lady who told me the out of service ferry was back up and running but couldn’t tell me if the run would be on-time. While I was on the phone with the not much help line, the line started to move. I got out our “we get to cut in line because my son has cancer” paperwork (this is a real document allowing us to cut in line so we don’t miss a ferry) and handed it to the guy in the toll booth, “Don’t worry, you’ll get on the next ferry,” he said handing me the document. We pulled into the loading area and waited.

By 7:50 we were in Seattle and driving up the familiar streets to Swedish. We parked, made our way inside, and by 8:30 Dylan was sitting in a big chair getting ready to drink the tracing solution that would light up any cancer cells still in his body. The nurse asked him, “I have banana, vanilla, chocolate, and mocha flavored solution, which one do you want?”

“Banana,” Dylan said. Banana? Eww, gross.

The nurse asked if we had any questions. She said he would get a shot of tracer fluid right before he went in and then she told us it was time for us to leave Dylan alone. He needed to drink the fluid, sit still for about an hour, and then the scan would take about 30 minutes.

It was a long two hours.

While Dylan was inside my mom and I were half-reading, and half-watching an interesting episode of “Lady in a wheelchair who doesn’t speak much English got dropped off at the hospital and no one knows where she needs to go.” Anyone who ever visits the Arnold Pavilion of the Swedish Cancer Center knows the security guard who stands just inside the second set of automatic doors, he is the most cheerful man in America. He greets people with enthusiasm, he gives directions, he fist bumps regular visitors, and he helps everyone who walks through the doors. Yesterday, his task was to figure out where this lost lady in a wheelchair was supposed to go. Her English was not good. She did not know if she had an appointment. She did not know how to get home. Most security guards would not bother to help someone like this, but he did. He got her apple juice, found out she didn’t have an appointment, called her family, called the home where she was living, got an interpreter, tried to find a bus route back to her place, and finally arranged for a cab to take her home. He managed all this while still greeting everyone who came through the doors.

When Dylan emerged from the lab area the drama of the lost lady in the wheelchair was over and Dylan was ready to eat. We walked to a German café and had lunch. There wasn’t much to talk about and we had about two hours to kill before our meeting with Dr. Pagel so we did our best to pretend everything was okay.

After lunch, we visited the Frye Art Museum. The Frye is a great little neighborhood museum that always has interesting visiting exhibitions and is free, there is even free parking! We spent an hour looking at the different exhibits and then walked back to Swedish.

We still had an hour to kill, and Dylan wondered if we could drop in early to see Dr. Pagel, so we did. The office was open, they could see us early, and before too long we were in a small examination room. Sonja (Dr. Pagel’s nurse) checked Dylan’s vitals and then told him Dr. Pagel would be in soon and “it will probably be a short visit.”

Dr. Pagel came in, sat down, and asked, “So how are things going?” He half-smiled, like people do when they have good news.

Dylan looked ready to burst. He told Dr. Pagel he felt good, but was stressed about finding out about the results.

Dr. Pagel said, “Everything looks good.” These three words have come out of Dr. Pagel’s mouth 50% of the time he has talked with us. Everything looks good on day 20. Everything looks good on day 50. Everything looks good on day 100.

“Does that mean there wasn’t anything on the PET scan?” Dylan asked.

“It is clear.”

“You told us when I was first diagnosed that I could see the first scans when we are all done.”

“You want to see the first scans?”

“Yes.”

“Feeling pretty cocky now?”

“I guess.”

“Let’s see,” Dr. Pagel went to the computer keyboard and typed. He turned the computer screen so we could all see. “Here are the first scans.” CT/PET scans on the computer screen look like slices of body cavity shaped blue and grey head cheese, “The red color is cancer.” Dr. Pagel scrolled through the slices. The blue slices were gradually replaced by more and more red as the scans moved down Dylan’ s body. At one point about 80% of the slide was colored red (the same cartoonish red of the morning sun). “Here are today’s scans.” He clicked on the screen and brought up the next set of scans. He scrolled through the slices, blue slice after blue slice went passing by like the many days spent in Swedish. Each blue slice a reminder of how far cancer treatments have come, a reminder of how miracles still happen, a reminder of how fortunate we have been.

I can’t really sum up my feelings about this whole journey. It is easiest to say I am relieved. I will go back to what I said early in my blog when I said I wanted to drive by Swedish someday and say, “That’s where Howie Myers was born, and where Dylan was cured of cancer.” Today is that day and blue is my favorite color.

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Author’s Note: I have been spending my writing time off-line and focusing on fiction lately. I miss my blogging family and friends and should be back sometime in the near future. 

The Bends

When will it officially be over? July 7th? That is the day scheduled for Dylan’s full-body CT scan. Or, is it over now? With most illnesses it’s easy: You get sick, you get better, it is over, but cancer lurks in the dark.

The past two weeks have been strange. I have returned to work, Dylan has recovered slowly on his own, and all of us are trying to figure out when we can release the breath we have held for three months. It feels like I have been underwater the whole time and have suddenly surfaced. It hasn’t been easy. The tough part is over, the mental struggle has begun.

Wednesday, Dylan and I traveled to Seattle for a scheduled appointment and his final LP (lumbar puncture, aka a spinal shot, aka the thing that always takes two hours longer than promised). Two weeks ago, when Dylan rang the bell signifying the end of treatment, we didn’t know about the final LP so it we were a little surprised we had another treatment, but like everything else on this strange trip we showed up for the appointment knowing it had to be done.

We arrived at the Swedish Cancer Center early and Dylan slept in the car as I listened to the radio. He had been unable to sleep at all the night before. He was tired, he couldn’t sleep, and he didn’t want to talk about it. At 9:30 we wandered over to the second floor to get the blood draw. The office on the second floor is exactly what you think it would be, lots of bald people waiting silently in a large room with a big fish tank. One by one, names are called out, the patient stands up in that slightly bent way most people undergoing chemo do, and walks over to the nurse who takes them into a tiny area away from view. The draws are quick and the results are done within 30 minutes, so after Dylan’s draw we headed up to Dr. Pagel’s office on the 10th floor.

Upon arrival, Sonja (Dr. Pagel’s nurse) hustled us back to the examining room where his vitals were checked and we talked about how things were going. He didn’t say much. It had been a tough few days. Dylan had to have a transfusion of platelets and red blood last week, but our expectations for a “good” day have changed a great deal in the last three months. Sonja remarked that Dylan looked better than he did last week. She did her best to pick up his spirits but the combination of lack of sleep and unstated dread over-ruled any positive energy anyone placed within ten feet of Dylan.

The Nurse Practitioner came in to look under Dylan’s hood and kick his tires. She remarked about how well he was recovering and then the blood results came in and they were FANTASTIC. Dylan wouldn’t need to get a platelet transfusion. He could stop taking is antibiotics and he didn’t need to get any more shots in his belly each night…he was done with all that, and then I asked, “When you say, ‘Done,’ what does that mean?” She wasn’t sure how to answer. “We have two months before he has his full body CT scan. That’s a long time to wait…what does your experience tell you? Did this work?” Dylan shook his head and plugged his ears, he didn’t want me to ask these questions.

She paused and then said what one might expect, “We can never be sure…yada yada yada…but the way that everything has gone points to a successful treatment. You need to keep an eye on things in the next two months but you can start to do things you did before.”

“He can lift weights?”

“Yes, don’t overwork yourself, start slowly. Your bone marrow is young and has recovered remarkable fast. All indicators are that you will have a full recovery.”

I could have danced around the room at that time, but my German blood only allowed me to say, “Good.”

No doubt the next two months will have some challenges, but if there is one life lesson to take away from all of this it is to live in the now and not to worry about tomorrow. We can spend the next two months treating Dylan like a precious piece of china, or we can live life fully and enjoy these two months of unknown.

We left the office and headed over to the outpatient surgery area on the 4th floor. We got in the elevator with a few other people and pushed the four button. A doctor got on and pushed the button for the 12th floor. The familiar light illuminated at the 12 and I felt an emotional tug, Dylan must have felt it also because as the elevator started up, Dylan tapped my arm, “Let’s go up to the 12th.”

The doctor overheard him, “They really like that,” she said.

So we went up to the 12th. To where this whole thing started. To where we spent all those days. We got off the elevator, turned the corner toward the nurses’ station, and saw Nicole. She saw Dylan, “Oh my gosh,” she shouted and then this happened.

Nicole giving Dylan a little love.

Nicole giving Dylan a little love.

And that’s where I’m going to leave it, on the 12th floor of Swedish hospital. The hospital where Howie Myers was born and Dylan was cured of cancer.

The Stars of this three-month journey

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Dylan and Joanna.

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Kelly reads Dylan’s armband while Gretchen matches the chemo.

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Shantel, Dylan, and a vomit bag.

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A Thousand Tiny Scratches

Today is exactly three months from the day we began this journey. Three months none of us will ever forget. Three months filled with moments of terror, joy, and pain. Today, around 3 PM, the last few ounces of Etoposide will drip out of the clear bag, flow through the plastic tubing, move past Dylan’s rubber port, and enter his blood stream an inch or so above his heart.

When this started Dr. Pagel said, “This will take four to six months.” At the time, it seemed unendingly long, but now I am amazed at how quickly it has passed. Monday morning I will be back at work and life will return to something called normal, but life is never normal. There will still be doctor’s visits, blood draws, and the month-long wait before the CT scan tells us if all of this worked; that fear sits close to the surface.

On Wednesday, three days into this stay, Dylan had gained 10 pounds. Rapid weight gain was the first sign that Dylan had cancer. When Joanna came around for her rounds, word had gotten out about his weight gain. She started her visit with Dylan in the same direct fashion that only someone who has done a difficult job for years can muster, it is a directness all of us have come to appreciate, “So dude, you’ve been gaining weight. Don’t worry, it isn’t your cancer returning. We’re pumping you full of fluids. We’ll slow it down.” Relief.

Our last stay has been marked by lots of statements that begin with, “This is the last time we will…” The last spinal shot, the last bag of Ifos, the last round of Cytarabine, the last night in Swedish, the last morning. It is the last for us…if everything goes as planned. Around four PM today, Dylan will ring the bell and we will celebrate. We will go home. Dylan will be very sick for a few days and then he will get better. The blood draws will stop. The antibiotics will be gone and his hair will grow back. Our personal journey will be done, but the 12th floor at Swedish will be full.

Tuesday morning, just after waking up, I sat staring at the floor. (This is what people who blog do. They look at the floor, or their belly button and then write about it.) It is easy to forget how pervasive cancer is in our world until you begin to think about it. Swedish is just one hospital in one city. Seattle has three or four more hospitals treating cancers. Each city has at least one cancer care facility and each of those hospitals is filled with patients. The number of people who have been in room 1266 alone is staggering. I know this because of the thousands of tiny scratches in the linoleum. The marks of people passing through this room are not recorded anywhere, there is no wooden beam to carve “Dylan was here” into, but there are accidental scratches and dents in the room that hold the story of cancer.

Hospitals are full of impermanent things. Empty bags of saline are tossed out. Purple rubber gloves are used once and then rolled into a ball and disposed of. Little blue plastic caps connecting the IV lines are sanitized and dropped in the trash. Everything in a hospital is designed to avoid decay. Use it, toss it out and nothing can decay, but beneath the surface of impermanence are the thousand scratches of lives that have passed through this place before we arrived. Our story is personal, but sadly, it is not unique. Many of the scratches have been left by people like us, the survivors, but there are also the many scratches left by people who did not survive. We are the lucky ones. The ones who will get to go home and watch a bald head grow hair, the ones who will remember Swedish hospital as the place where Howie Myers was born and my son was cured of cancer.

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.

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