Tag: Swedish Hospital

Blue Is My Favorite Color

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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 His curly brown hair has been replaced by soft, blonde hair (which he hates), and he is back to fighting weight.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. 

A Thousand Tiny Scratches

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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.

Ebb and Flow

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Dylan woke up the next day with unbelievable throat pain. No one was sure if the pain was a side-effect of the chemo, which happens, or if it was some type of infection so they bombarded him with everything. With cancer patients who have entered into a low immunity phase, there isn’t the luxury of waiting to find out the cause of the infection. Dylan spent the next 24 hours filled to the brim with pharmaceuticals and he was an unpleasant patient. He needed to move but refused to get up and “walk laps” around the ward. (The Oncology unit is a triangle of rooms connected in a way to allow patients to push their wheeled IV towers around like a flat version of an Escher painting.) A few hours passed and Dylan would not move, Joanna (Nurse Practitioner) came in, “I know this sucks. I know it hurts, but you have to get up and move. You can’t retreat into your mind. I do this to 80 year-old people all the time and they survive. You have to get up and move. You are young, it hurts, it sucks, it’s unfair, but you have to fight,” she said in a little half-time speech Vince Lombardi would envy. Dylan nodded, got mad, and then moved out of the bed and we walked three angry laps.

The day was long and I needed a break, I told him that I was going to run to the market to get him juice once he fell asleep, but what I really needed was a walk outside of the hospital. I put his cell phone next to his bed, waited for him to zone out, and then I left. I walked for about an hour. The weather here has been unseasonably warm, sorry East Coast, but temperatures have been in the mid-50s and there have even been a few clear days of warm sunshine.

When I got back he was still sleeping and I pulled up my chair next to his bed and held his hand until he woke up. When he was coherent enough to speak, even talking hurt his throat, he wanted me to read a poem or two. Through a series of thumbs up, thumbs down, we selected Wordsworth’s Tintern Abbey (the entire title is far too long to write, for someone who was one of the world’s greatest poets the dude could not title poems). I could read Tintern Abbey every day for the rest of my life and not get sick of it. It is a longer poem, but the rhythms of language are sublime. After I finished Wordsworth, I rolled right into Auden’s Musee Des Beaux Arts primarily for the first line, “About suffering they were never wrong…” When I finished I talked a little about the poem, showed Dylan the Bruegel painting that Auden was referring to and talked about how suffering is a human experience we all share but chose to ignore when it is happening to others. It struck me during my walk how many times I had driven by Swedish Hospital and ignored the suffering that exists within the hospital walls. Swedish had been an ongoing joke to me for years because a guy I played college basketball with had been born there and every time we played Seattle University we would drive by and Howie Myers would say, “I was born there.” Even after Howie graduated, I would say to other guys on the team bus, “Swedish, that’s where Howie was born.” The joke even infiltrated into my family, up until last month I could drive by the hospital and say to my family, “There’s Swedish, you know who was born there?” My family would answer: Howie Myers. It never got old for me, but sitting on the 12th floor during all of those Howie Myers’ jokes were people dealing with what my family is dealing with today. I hope a year from now I can drive by the hospital and say, “That’s where Howie Myers was born and where Dylan was cured of cancer.”

By the evening, Dylan was able to eat some apple sauce and drink a protein supplement. He slept reasonably well and woke up wanting food. We ordered eggs, bacon, and green tea. He ate everything. Joanna came in and outlined the next treatment: Sunday fill up with chemo, wait 24 hours, flush the chemo, check counts and if everything went well we might be able to go home for a few days. She also announced that his platelet count was low, 23,000. (The normal range is between 100,000-400,000.) He was going to get a platelet infusion so he could get above 45,000 and then get another shot in the spine. His immune system was broken, which was expected but his platelets seemed to be a concern for the staff, but Dylan’s spirits were up and then we got even better news. One of my ex-students, Amy, from many years ago contacted me through Facebook. She had read my blog and wanted to know if Dylan and I wanted to have a meal from the restaurant where she worked, Assaggio Ristorante. A great meal, from a place not called The Cafeteria? Yes, thank you very much. An hour later, Amy brought by Fagioli soup, Spaghetti Bolognese, and Cinghiale Pappardelle with wild boar. OMG!!! Dylan ate, and ate, and ate. It was the most he had eaten in a month. It was so good, and Assaggio Ristorante is now my all-time favorite restaurant in the world…Amy also moved up a few places in my list of all-time favorite students.

Around the same time, Tim (Dylan’s friend attending UW) brought by a bunch of Gatorade and a voucher for Tim’s family restaurant (The Dynasty) back in Sequim. Tim’s mom, Melissa, had a full menu of all Dylan’s favorite dishes listed on the voucher…such kindness.

The evening came and Dylan was feeling good. The day had been a great (speaking in relative terms) and things were really looking up as evening approached, and then things turned again. Dylan’s platelet counts had dropped to 17,000  even after the infusion. Another round of platelets was ordered up and there wasn’t much chit-chat about it from the staff. It is times like this that I get worried that things aren’t going as planned, which is always the fear isn’t it? Nevertheless, the shot in the back was delayed until his count came up. For the first time in his treatment he became chilled and needed warmed blankets.

The next day, my wife (Cheryl) and parents came to visit. My parents knew some people from their church who had an empty condo downtown that they were making available for my wife and I to spend time in when we could get someone else to spend nights with Dylan. My mom, an ex-nurse, was going to spend the night as Cheryl and I got away for a few hours.

The condo was over by Queen Anne, across town, and was walking distance from a nice group of restaurants. We left Dylan in the busy, capable hands of his grandma and did our best to have a relaxing evening. As we ate dinner and spent time talking about this awkward journey, most of our sentences were cut off mid-way as we paused to avoid crying, I’m certain our waitress thought we were lunatics, but after your child has been diagnosed with cancer what other people think stops mattering.

I outlined the last few days with Dylan and then something a bit magical happened. Cheryl talked about something she had shared with Dylan throughout his life that I was not privy to, and that was that even before he was born she had visions, or images of Dylan that were years away. They weren’t images she consciously thought of, they just happened, a little momma magic. Before he was born she saw him as a toddler and he grew into that very image. These images continued as Dylan aged and each time the image was exact and accurate. Those images ended a few years back as Dylan went through some very difficult depressive times and everything was dark. As Cheryl talked, I was reminded of the end of Raising Arizona where Hi (Nick Cage) talked about a dream he had of a future full of family and children even though is wife was barren. The end of the movie really hit me hard while watching it with Dylan and as I talked about it with Cheryl she said, “While I was driving home last week, just as I crossed the Hood Canal Bridge a new image came to me. Dylan was on a stage, he had short hair, like his momma likes, and there was a large crowd applauding him.” It couldn’t get much better than that.

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