Tag: beating cancer

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 His curly brown hair has been replaced by soft, blonde hair (which he hates), and he is back to fighting weight.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

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.

Killing Time and Kicking Cancer Ass

Checking off the drugs one at a time.

Checking off the drugs one at a time.

How is round two going? Boring, boring, boring…in other words, it is going really well, so far. The cancer poisons are dripping into Dylan’s chest port, he is tired and his appetite isn’t super, but he has not needed any heavy pain killers and has only taken nausea drugs to eat and sleep. So yesterday was a good day.

We did get a visitor yesterday, an Administrator from the hospital was gathering opinions on Swedish. Our one complaint? If we are here during March Madness we might miss some basketball games because the hospital only gets 15 channels. When the thing that bothers you the most is that you only have one channel of ESPN, well, then things are not too bad.

On Tuesday, my mom drove us to the Bainbridge Island ferry and dropped us off. Swedish isn’t walking distance from the ferry for someone in Dylan’s shape, but there are lots of taxis and guys driving black Town Cars offering rides to wherever you might want to go, so I knew it would be an easy trip once we got off the ferry. The entire waterfront is a construction zone now (according to the original plans it was completed two months ago…it might be done by the time the Sonics return to Seattle) and so there are just a few walkways to go through as you exit the ferry and that is where the guys with black Town Cars wait. Our driver, who I selected through the scientifical process of announcing, “I’ll pay $10 to get to Swedish,” was the first guy to grab my rolling bag and run us across the street. Once we were in the car and heading up to Swedish I learned a lot. I like to talk to people and our driver liked to talk also. He was from Ethiopia. He and his wife moved here after living in Kenya for a few years. Kenya is a terrible place full of corruption and bad cops. Ethiopia is a nearly perfect country with a climate very similar to Seattle. Africa is much larger than most people think. The Sudan is possibly the worst place in the world. There are lots of sayings in Ethiopia about when times are tough that I can’t remember at this point because I didn’t write them down. He was going to pray for us and there is always a reason for suffering.

Is there always a reason for suffering? I know pain helps us appreciate pleasure, but I don’t buy the company line when it comes to suffering. I’m not talking about the suffering my son has gone through in the past month; I am talking about the suffering that exists in this world. Is it fair that through sheer luck and geography that my son ends up in one of the leading cancer hospitals in the world, while other people die because a mosquito bites them? This struck me, and to be honest I felt a little guilty about it, when I told our driver we were going to Swedish for cancer care. In Africa, which really is much larger than most people think, suffering goes on without much notice here in the western world. How does one weigh fairness of suffering? I haven’t studied Ethiopian history, but I do know that the British did not create an empire by handing out lollipops to the locals, and I know that Halie Selassie isn’t going to get recognized with a posthumous award from Amnesty International. So has all the suffering in Ethiopia been for reason? I doubt it.

While individual suffering might sharpen our personalities, or cause us to look at the world differently, I have difficulty swallowing the idea that in the long run it all balances out. If the world really was just, then I wouldn’t have to worry about only having one channel of ESPN.

Where We’ve Been

Today, makes two weeks in Swedish Hospital in Seattle, it seems longer. I know all the nurses by first name, I know when blood draws are, I know that Dylan’s once distended belly hasn’t grown noticeable, and I know he feels better, but I also know the cancer fighting has just begun. Yesterday, before Dylan and I had our Bro-Down, we spent some time talking about what beating cancer might look like. We talked a little about five-year survival rates and the future of cancer treatments, about what “cancer free” really means, and about the really scary prospect that all this progress is just a tiny step.

When we started chemo, Dylan needed help standing when getting out of bed, today he stands on his own and needs hardly any help getting up at night to empty his bladder for the five bazzillionth time. He discusses his treatments with his nurses and decides which pain killers and sedatives work best for him. He spent thirty minutes talking to Nicole about what cancer is and how it works. Things are better, but…but…but…

Yesterday, we knew Dylan would be starting a new chemo treatment and everyone indicated it shouldn’t be too much of a problem. He might get a headache, he certainly would pee a new shade of yellow (day-go), and depending on how he reacted, we could get a few days to spend outside of the hospital. Our plan was a simple one, all dude stuff all day.

We kicked off DudeFest 2015 by watching the NBA skills contests on my iPad. I recorded the event on my DVR in Sequim and through the interwebs I could contact my DVR and watch it on my iPad. I grew up holding a television antenna to improve the picture and turning a knob to change the channel, so sitting in a hospital room in Seattle and watching something on my DVR two hours away took a little getting used to. We laughed, cheered, and it all felt pretty normal except Dylan had to go to the bathroom every 15 minutes because they were pumping him full of bicarbonate to get the ph level in his pee to reach seven before starting chemo. (I don’t know what any of that last sentence means, but that is what they were doing.) After the dunk contest, Dylan hit the magic ph pee number and Nicole came in with the chemoimage

There is an odd ritual that takes place with each chemo treatment. The lead nurse arrives with the chemo drugs in a sealed in yellow bag. The lead nurse then puts on a Tyvek gown and opens the bag. A second nurse comes in and they read the labels on the patient’s arm and match it up with the chemo drug. I suppose this helps prevent mistakes. Then the bags of chemo drugs are hung on the tower and we go back to doing whatever we were doing. Every 15 minutes, Dylan’s vitals are checked and everything seems pretty normal, other than the fact that Dylan’s blood is being filled with deadly chemicals…another day in room 1266.

After this treatment, Dylan and I did a few laps around the ward and snuck into a couple empty rooms to compare their view versus our view. Some of the rooms have a pretty righteous view of the entire Cascade Mountain Range from Rainier to Canada, but our room is larger and closer to the important things like free coffee and the family bathroom. After five laps, Dylan sent me out to find two good Bro movies at a nearby Redbox. I picked Fury and The Equalizer. Dylan ordered a hamburger from the cafeteria and I went down and picked up one for me too. The rest of the night was spent watching two violent movies and eating unhealthy food. It was petty good, it would have been better if the tv screen was a little larger than 21 inches and we didn’t have to put on the subtitles to see/hear what was being said, but all in all, watching the movies was really good.

The only mildly troubling part of the day was when Dylan was weighed. Two days ago he weighed 226, today he weighed 207. His weight has fluctuated like Anna Nicole Smith’s in the past two weeks and now that his guts are back to intaking and outputting, he has cleared out a lot of stored materials, so dropping twenty pounds isn’t shocking, it is just something for me to worry about.

It’s 6:35 AM, the sun is rising, planes are drifting up from SEATAC into the clear skies every twenty seconds, the top of Rainier is pushing above the morning cloud bank, and my son is sleeping soundly.

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