Category: The Longest Journey

Slow Times and Memories

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

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

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

“That’s a long way.”

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

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

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

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

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

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

“Too soon?”

“Too soon, like a wave. You know?”

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

“Oh, like a wave…Tsunami. Right?”

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

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

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

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

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

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

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

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

The Tiny Things

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

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

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

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

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

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

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

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

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

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

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

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

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

Round 3.5?

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

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

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

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

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

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

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

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

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

A Happy Place?

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

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

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

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

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

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

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

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

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

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

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

The Third Round of Chemo is the Charm

As we waited for the ferry to leave the dock for round three of chemotherapy yesterday, Dylan and I watched a family of Canadian geese bobbing in the harbor. The two adult geese were standing atop a group of pilings 20 feet above the little black bodies of their offspring. The tiny geese dove below the water’s surface and generally not following what I might term good  guidelines for survival.(I’m not an Ornithologist and am certain there are specific words created for these differing bird groups/ages/types, but I don’t care enough to find out. It takes less mental energy to write a long parenthetical note letting you know I don’t care. Call me a lazy writer if you wish, or leave me a comment on how a family of geese is called a gaggle, but keep in mind it will not change what I have written.)

Most of the baby birds stayed in a small group, but two of them began to move away until they were a dangerous distance away. They were so small against the cold, wet, gray world surrounding them, and yet they didn’t care. They dove deep into the black unknown Puget Sound without thinking about the danger hiding below. As the ferry pulled out of the dock, Dylan pulled his hood tight around his bald head and went to sleep on the bench seats we were sitting on. The ride only takes about 30 minutes from Bainbridge and for about 10 of those minutes we rode on in peace, and then a 17 year-old girl sitting in the bench seats next to ours got a phone call. I am amazed at how clueless people are about phone calls in public. Nobody wants to hear your conversation. Nobody around you thinks you are as charming as the person calling you. So…take your call quietly, or go find yourself a tiny place where no one has to hear you squeal and say over and over, “I’ll be your wingman. She’ll love you after I get done with her.” I’m all for a little room, like a sound proof cage, for people who must talk like they are in their pink bedroom filled with stuffed toys named Brad, Bradley, and Prince William.

Dylan slept through the whole thing, but he was not looking forward to the next round of chemo. We left the ferry, got a ride to Swedish and by noon we were checked in to room 1249. Dylan wanted me to run out and get him a sandwich from a terrible national chain sandwich shop nearby while the IV nurse put in a new access point to his port. I zipped over to the shop and got him his sandwich and when I got back his IV was not in. He said the nurse could not get it done so somebody else was on the way. We ate our sandwiches. (Yes, I ordered one also, I may think their food is terrible but that won’t stop me from eating there.) We finished our lunch and before too long Dylan’s port was accessed, blood was taken and sent down to the lab so his chemo cocktail could be mixed, and by five chemo started. Reina, our nurse, put up the treatment schedule and it was much shorter than we had anticipated.

Dylan had difficulty with Rituxan (a drug for tumor killing) the first time through because his abdomen was filled with tumors, and the last time he was able to tolerate the drug much more easily. The process the nurses follow is they start the dosage at around 100 and then bump it up 50 each half hour until the patient can no longer tolerate it. Tolerate can mean many things, it can be pain, discomfort, itchiness, heart problems, elevated blood pressure, or anything different.  As chemo began, I read David Foster Wallace’s commencement address to Kenyon College titled This is Water. Dylan had not read it yet and I thought it would be the perfect time to read it. I love DFW, and This is Water was how I was introduced to him. It was a good choice, because it gave us time to talk about empathy and being conscious of others. (This empathy does not extend toward loud cell phone talkers.) After I finished reading it, we got up and walked the halls of the 12th floor. Each nurse who knows Dylan stopped him to check in and give him a moment of love, it felt a little like the first day of school after summer vacation. It is moments like this that  I realize my kids are going to be okay after I am gone, or after they have swum away from my watchful eye. The world might be a cruel place at times, but it is also a place filled with compassion and love.

This time Dylan raced through the Rituxan. At one point, late last night, he was asking to turn it up to 500 even though the nurse said the pump only went to 400. This is when I know I raised my little boy right, even during chemotherapy he was referring to the mockumentary Spinal Tap.

This morning he sleeps. He has finished most of his chemo in a single night. He still has a spinal shot and one more thirty minute treatment, but it went amazingly well, so well that I slept through most of it. There is still the unknown, but sometimes the dark murkiness isn’t something dangerous, it is just dark.

Define “Cure” for me.

I have been thinking about the word “cure” lately. The doctors used this word when Dylan entered round one of chemo and since I have had some mental breathing time between round two and three, I have been wondering about what cure really means. Does cure mean this cancer will be gone? Does cure mean it will never come back? Does cure have a five-year waiting period? These are the questions I haven’t asked.

Here is what I do know. We have two more rounds of chemo. They will probably be like the last round which means Dylan will be knocked down again, but they will be shorter, like round two, if everything goes well. Then, when we finish round four, Dylan will get to ring a bell on the 12th floor at Swedish announcing that he is done with chemo. There will be a moment of joy…and then we will wait…for a month before he gets a CT scan looking for cancer. That is the month I am thinking about these days, it stands out there in the distance ready to embrace us, or to cut our hearts in two.

If Dylan is cancer free after a month we wait for five years. Five years…seems like an eternally long time to wait, but cancer patients are not considered “cured” until they pass through that five-year window. Hopefully those five years will be long and uneventful on the cancer front, but how do we begin to pick up the pieces of our lives and begin building again? I feel a little like those people you see on the evening news who have had some natural disaster hit their homes. Most of them announce bravely that they will rebuild. They will be back. Things will not change for them. What happens if another natural disaster hits again? Then what?

This morning I was reminded (thanks to AhDad) of a poem by either Roy Croft, or Erich Fried titled Love. (The poem’s origin is a bit misty, but I live in a country where the Supreme Court and Mitt Romney think companies and people are the same thing so it doesn’t really matter who gets the millions of dollars this poem has produced. There is a good deal of money to be made in poetry…if you work for an ad agency.) There are many lines I love in this poem, but the one that has always stuck with me is, “I love you because you are helping me to make of the lumber of my life not a tavern but a temple.” The sticks and lumber left from this cancer thing are left for us to build from. We can rebuild the same life we had before, but we also have the choice to build something new, something better. What that means at this point is something I cannot know.

Dylan and I have spent a little time talking about the future, but not in a concrete and calendared way, most of our discussions have been about the unknown. It wasn’t that long ago that he had a plan, but that has changed. Now, we talk about the future in a more abstract and open way. I don’t know what Dylan is going to do with the lumber of his life; I’m pretty sure he isn’t going to build a bonfire, but he might build something without a clear plan, something he loves, something different. When death reaches out his bony finger and touches your shoulder sticking to human timelines has a pointlessness that seems more absurd than usual. About a month ago, Dylan said, “I want to build a gaming computer.” Of course, I thought this was a complete waste of time and money so I gave him a whole-hearted, “Whatever.” Since that time, he has cobbled together bits and pieces of computer hardware without any financial support from us. I don’t know how he has done it, but it has happened. I don’t know if he knows how to put the bits and pieces together, but, in the end, if it gives him something to do while waiting for the next round, then I guess it is a good thing.

The wait has become a time to fill with distractions (NCAA basketball games, grading papers, and seeing people) but on Wednesday, we head back for round three. Round three is when I will ask, “When you say cure, what do you mean? What are the usual timelines? When can Dylan resume life?”

IMG_0071

Two weeks ago, Jared Romberg and other firefighters from around the Pacific Northwest climbed this tower in full gear. The climb was to raise money to find a cure for cancer. Most of the firefighters climbed the stairs in less than 35 minutes. (Which I could do easily if I was allowed to use the elevator.)

I began to wonder if the cure for cancer were the top of the tower, how far has Dylan climbed? Is the top of the tower five years out? Or, is it three or four weeks from now when Dylan will ring the bell on the 12th floor of Swedish? How far up the tower are we when it comes to finding a cure to all cancers? These are the things I think about while waiting for an end to all of this.

Jared, before the climb. Yes, that goofy picture on Jared's helmet is Dylan.

Jared, before the climb. Yes, that goofy picture on Jared’s helmet is Dylan.

Tomorrow I will pack our bags, put together a list of items to bring along, and double-check everything so that our third stay at Swedish is as comfortable as possible. I won’t end up with everything we need, but I will have the essentials: a few books, music, snacks, and clothing. You can’t plan for everything that is going to happen, but knowing that makes all the difference.

Between Rounds

Chemotherapy is like an MMA fight. The rounds are filled with savage violent body damage. The breaks between rounds are short and the dread that the bell will ring to start the next round hangs in the air, but as you get closer to the next round you realize the end is getting closer and closer.

Dylan and I have been home for nearly a week and have fallen into a lazy routine. There are daily blood draws at the local cancer clinic, phone calls about platelets and blood cells, and a lot of waiting. I have begun digging into the stack of bills from various hospitals, doctors, ambulance companies, and notifications from our insurance company. The financial aspect of this journey is something that will take some time to work through and I know it will all be okay, but the paperwork associated with medicine in the United States is something only an accountant would get excited about. I began putting all the bills in a folder between round one and two of chemo; it looks like I am going to need a second folder. I spent 30 minutes on the phone with the insurance company before they told me they couldn’t talk to me because Dylan was 20 and had to fill out a form before they gave me any more information. We are not destitute, and both my wife and I are college graduates, but the financial side of American medicine seems designed to confuse people. (Yes, I am a Socialist.)

Yesterday, after four phone calls, we ended up doing Dylan’s blood draw at the medical center instead of the cancer clinic. Dylan doesn’t like to use his chest port to do blood draws because it takes longer and feels funny, so instead of setting up an appointment at the cancer clinic we were told to drop in when we wanted to the medical center because they do blood draws from people’s arms all day long. I don’t know if we ended up there at a particularly busy time, or if the Sequim Medical Center is the Time’s Square for old people who don’t know to cover their mouths when coughing, but the waiting room was full of old people who either had Tuberculosis or hadn’t seen any of the recent movies about pandemics. Dylan had on a medical mask because he is still susceptible to germs but the sick people in the waiting room didn’t seem to understand that when you cough into your hand and then touch things, like for instance, A PEN EVERYONE HAS TO USE TO SIGN IN you are spreading germs. Hey lady with the TB cough, see that bottle of hand sanitizer? That’s for you. See those masks? If you are coughing, put one on!

I snuck peeks at Dylan as we waited, and each time I looked, he was adjusting his mask to make sure there was no way for any germy air to sneak around it. It might seem like a minor issue, but when someone is neutropenic, germs become something more than an abstract threat.

Eventually, the blood was drawn and sent somewhere. Where the blood went, or what the results were is still a mystery because no one called to follow-up, and none of my calls were returned. (I assume if it was bad news someone would be on the phone immediately, but at this point I don’t know if his blood ended up with the right people. Dylan told me not to cause a stink because he felt fine.) Dylan and I spent the short drive home unpacking our anger at people who spread germs. He offered the excuse that it could be a generational thing (he was defending our community’s elderly folks), but I said there was no excuse. To be honest, I have become less and less tolerant of the large number of retired people who move to Sequim to live and vote against school bonds.

Later in the day, I ran to Safeway to get some supplies for dinner. As I was doing the self-check-out thing, I heard a lady behind me asking, “Are you okay?” I turned around and saw an elderly man in some distress. He had one knee on the ground, one leg sprawled out behind him, and was hanging onto his cart to keep himself from falling. His sheepskin slippers were coming off his feet and he was trying to lift himself into a standing position. A Safeway employee was trying to help him to his feet, but he was a big guy and she was a small lady. I left my groceries, went over to the old man, and asked if he needed help. He looked directly into my eyes and said, “I have Parkinson’s.” His thick glasses gave his eyes a googly, loose affect and he looked truly lost. His body and mind had betrayed him and now he was splayed out in the middle of Safeway as alone as a person can be while surrounded by people. Once we got the man to his feet, he said, “I’m okay now,” but I was still holding him up and could feel his legs weren’t supporting his weight. I knew what this man was thinking. He didn’t want help. He wanted to be strong. Asking for help is a sign of weakness. Even before Dylan’s illness, I was someone who would help people who looked like they were having difficulty, but I did so without much empathy, like ripping off a Band-Aid. Quick and done, but I couldn’t leave this old man. He said he didn’t want a chair, but we got him one anyway. He said he was okay, but he Safeway employee went and got him a motorized shopping scooter and I waited with him. I helped him into the scooter and he said, “I don’t know how to use this.” The Safeway employee gave him a quick lesson on how to use the scooter and I went back to my groceries. I couldn’t shake the image of his eyes from my head, like two blue doll’s eyes rolling around without focus. The distant, glazed look of someone looking for a familiar face and finding no one but strangers. His attempt to maintain the dignity of autonomy took him to this place, this place where he was no longer capable of doing a simple thing without help.

By the time I got out to my car, I was already thinking about how resistant we are to asking for help. We want to stand on our own feet. We want to be strong. There is probably some scientific/psychological reason behind it all that can be traced back to our tribal roots where weakness led to being kicked out of the herd, but I am finding there is a strength in weakness. Vulnerability isn’t valued in our culture, but maybe it should be. I’m not talking about the type of vulnerability that causes people to update their Facebook status to “Random, obscure, statement, looking for attention,” but the type of openness that allows us to say, “I need help, be kind to me.”

I was also having an interesting internal conflict about wanting to punch the old lady who was coughing near my son earlier in the day. The line between self-preservation and empathy is thin, but it wouldn’t hurt to put on a damn mask and use some hand sanitizer anyway.

Of Dreams and Nightmares

I don’t remember my dreams. I wake up, remember I had a dream, but cannot remember what the dream was about. On my first night home, after a good second round of chemo for Dylan, I had a vivid dream that I could not forget. I am not a believer in dreams as a way to tell the future, or as a way to write novels about Vampires living in Forks, Washington, but I do believe that our subconscious is an uncontrolled mess of emotions and unwound ideas, and eventually, no matter how much we suppress our inner world, these things climb out of their dark basement and into the light.

The Dream: It was a windy night. I could hear the wind whistling by the house as I prepared to sleep, but it was not the type of wind storm that would blow the garbage can over and knock down trees. When I woke up in the morning I looked out of the bathroom window and something looked like it was missing. At first I could not tell what was different, but when I called my wife’s attention to it she said, “The garage is gone.” She was right, nothing was left of the garage except the concrete pad. There wasn’t a stick of wood left standing. I walked out to where the garage used to be and could see that all of it had blown into a swamp between my house and our neighbor’s house. (For the record, there is no swamp near my house.) As I got closer, I could see that my garage had blown into my neighbor’s house and destroyed it. The neighbor family was stuck in the swamp mud up to their waists. I went into the swamp to help get them out. Then I woke up.

I don’t know what the dream meant, but it stuck with me.

Dylan was feeling good on our first morning home so I decided to run into work and spend the day fixing the various problems associated with me being gone for a month. It was good to be back in the classroom and I ended up spending the full day teaching. When I got home I was exhausted. My throat was raw, talking for seven hours at an elevated level will do that to your throat, as the school year goes on your body adjusts to the demands of teaching, but my body was not ready for the shock of a full day of talking and there are not too many places on the planet as germ filled as a public school so deep down I was worried about getting sick.

The next day I took Dylan to get a blood draw at the local cancer clinic. The results were great. His counts were up and he was doing better than expected. We had another blood draw and an appointment in Seattle on Friday but after the results came back we were told that we could do the draw at the local clinic.

Things were looking good and it could not have happened at a better time. My daughter, who has spent the last month being strong and independent, and I had a concert to attend in Seattle. Initially, when I okayed the concert, I assumed I would be in Seattle at the hospital and would just pop out with her to the show, but now I was heading back over to Seattle to see Bambu do his rap thing (concert review upcoming). It was a late night and by the end of the evening, I wasn’t sure if my sore throat was an allergy, or turning into something else, but since Dylan was healthy it wasn’t too important.

On Friday, I slept in and my wife took Dylan to do the blood draw at the clinic. Around 11 AM I got a call from the clinic saying that Dylan had bottomed out. His immunity was now zero. He needed a transfusion of red blood and platelets. After a few hours of trying to arrange a transfusion nearby, the nurse at Swedish decided that we would be better off driving to Seattle to do the transfusion. Before leaving I asked if we would be done in time to get home on the last ferry around 1 AM; they were certain we would be able to make it. Dylan wore a mask to protect him from breathing in germs, but I wasn’t completely honest about how I was feeling. I didn’t feel sick, but my sore throat hadn’t gone away and the driving a late nights were catching up with me. I drove to Seattle with Dylan and my wife knowing I should probably have stayed home.

Once we were at the hospital, I wore a mask and made sure my contact with Dylan was minimal, but as the evening approached it became more and more clear that we were not going to make it home that night. It takes three hours for each bag of red blood and about a half hour for platelets. It was around 8 PM when the red blood started. I knew staying in the hospital room with a mask on all night would not be great for my already sleep deprived body, so I announced I was going to go home. My wife agreed to stay the night with Dylan and I would get them in the morning after a good night’s sleep.

When I woke up the next day, I felt worse. To spend three hours in the car with my son would be unforgivable. One of the doctors at the hospital said to Dylan, “Any illnesses at this point could kill you.” I called my dad and arranged for him to pick up Dylan and my wife. I cleaned the house, sanitized every corner, and then hid in my bedroom away from Dylan.

Last night, around 11PM, Dylan knocked at the bedroom door. His temperature had gone over 100.5 which was the signal that he had to go to the hospital again. My wife got up and drove him to the emergency room in Port Angeles. I sat awake in bed texting my wife, remembering how six weeks ago she had taken him in with stomach discomfort to the same hospital. I remembered the crushing words coming over the telephone, “They think it is cancer.” I remembered how everything changed in an instant. I spent the next two hours hoping Dylan wasn’t getting sick just when everything seemed to be going so well.

Then I got the text, “Everything is good, we are coming home.” Relief. Total relief.

In My Own Private Idaho there is a memorable scene where a barn is dropped on a lonely road in a desolate part of Idaho. The barn smashes into a pile of broken sticks. Sometimes I have thought of how to explain what the last six weeks have felt like and it is that image that continues to return to me. tumblr_msrf4t8ugl1s1lhtpo1_400

In an instant life happens. We don’t get the chance to stop things and figure them out. Borrowing from Kierkegaard, we live our lives forward and can only understand them when looking backward, so when a barn is dropped on our lives, or a dream blows away the garage, we don’t have time to figure out why, we just have to live.

Our Numbered Days

Dylan will finish his second round of chemo today at noon. We could be sent home in the late afternoon. We still have two rounds left, but if the last two rounds go this well we could be done with the chemo long before we thought. What happens after chemo? A month-long wait and then a CT body scan seeing if all the cancer is gone. I don’t want to think ahead to that time because the anxiety of the future isn’t worth the mental energy.

Yesterday, Shantel brought in Dylan’s latest blood work numbers. His counts are already out of the danger zone (below 1,000). Last round we were dealing with numbers like zero, 30, and 180; his total count is over 3,000. As Shantel said, “Your body is telling cancer to stay out.”

That doesn’t mean things have been all wine and roses here in room 1263, Dylan’s appetite is not great. The nausea has him down to eating in short spurts of opportunity. He has had it with the cafeteria food and so I have headed out to get him food from nearby restaurants, which isn’t a hardship because the weather here has been unbelievable, sorry East Coast, but Seattle was 63 degrees and sunny yesterday. So when Dylan said, “I want a chocolate Top Pot donut. A couple sausage patties and hash-browns,” I was happy to hit the streets in search of breakfast. As I was walking to Top Pot I noticed a homeless lady coming out of the bushes near a church. She started dragging her blue tarp and sleeping bag down the sidewalk blocking most of the path so I stepped aside to let her pass.  When she was next to me, she looked up at me and asked, “Are you a Wookie?” Okay, I get it. Tall, out of control beard= Wookie. The worst part of being mistaken for a Wookie was that I didn’t have a good response for this poor lady. All I did was give her a cheerful, “Nope.”

My mission to find Dylan exactly what he wanted was hampered by the fact that nothing opens on Sunday morning around here until 11 AM. So, I ended up gathering a couple donuts and a smattering of breakfast sandwiches from Starbucks and bringing them back to the room for him to sort through. He ate a bit of this and a bit of that and then laid back like a drunk trying to avoid the bed spins.

A bit later, around 9:30, he sat up and we took a walk to look at the Columbia Tower. Each year, firefighters from around the Northwest climb the tallest building west of the Mississippi to raise money for Leukemia and Lymphoma research and yesterday was the day the event was taking place. Some of the firemen dedicate their climbs to family members and friends as a way to inspire them to reach the top. Jared Romberg, a fireman we know from Sequim, was dedicating his climb to a family member and Dylan. (Donations are still being accepted: Columbia Tower Climb.

Columbia Tower is the tall black one.

Columbia Tower is the tall black one.

Dylan and I looked out through the large window in the family room at Swedish toward the Columbia Tower. In some ways it was a surreal experience, the tower looked the same as it always did, but today the stairways were filled with firemen climbing to the top to raise money for the very cancer that my son has.

When we got back to the room Dylan took a nap and when he woke up he seemed a bit bummed. “Does this feel real?” he asked. The funny thing is I knew what he meant. So much of our identity is wrapped up in our activity and when you are in a hospital the activities are things like getting blood drawn and talking about the color of your urine…the experience of hospital life has a way of disconnecting you from the world and soon you realize that while your life has stalled, everyone else’s continues to go on. I told Dylan that I didn’t know what it was like to have cancer, but I did know what it was like to lose your identity. Anyone who has played a team sport and had a serious injury knows what it is like. One day you are part of a team and the next day you are not, you are in some athletic limbo place where you exist outside the team. On 2/1/2015, my son was a Peer Support Counselor and full-time college student; two days later he was a cancer patient. I am certain that his identity as a cancer survivor will be a deep source of strength in the future, but for now he is sidelined from life and frustrated. This is a good thing, it means that he is beginning to think about the future.

I have also begun to think about the future. I have avoided looking on the internet for information about Dylan’s specific type of cancer. (If you recall, early in Dylan’s diagnosis liver cancer was a possibility and the survival rates are under 10%, so I have been reluctant to return to the internet for information.) Yesterday, while Dylan was taking one of his power naps, I went to the American Cancer Society webpage and looked around. There is lots of good news about cancer research and survival. Between 1975 and 2010 death rates for cancer victims have declined by 50%. Dylan’s specific cancer has a 50% survival rate. His age and overall health have been a great help in this fight so far, but we are not out of the cancer woods yet.

Maybe it is because I turned 50 yesterday, but I have been thinking a lot about my numbered days. So far I have been alive for 18,251 days. I don’t know how many days I have left, but I’m not going to spend too much time worrying about it. I have traveled, loved, cried, and shared life with wonderful people. These last 40 days have been some of the most intense of my life and I am going to agree with Jim Valvano on this one, a full day is one where you have the chance to laugh, cry and think, so most of these 40 days have been filled to overflowing. I don’t think we get a second chance at life, it’s a one shot deal, but if I did get a second round I guess it wouldn’t be so bad to come back as a Wookie.

The Big Five Oh

Some days are harder to write about than others. Today, as I sit in room 1263, I’m not sure where to start and I have already started and deleted hundreds of words several times, so I’m going to turn off my internal editor (I know, my internal editor should keep his day job) and write about yesterday. Maybe my difficulties stem from the fact that today I turn 50 and 50 year-old men are supposed to have gained some wisdom along the way. I don’t know if I am any wiser than I was when I was 25, but I do know that I have been right about my one guiding principle in life: Don’t wait.

Life isn’t a straight line. Life isn’t a line at all. Life is a series of experiences that you either allow or avoid. (Don’t worry, I’m not going to go all Timothy Leary here, but I might go a little Henry David Thoreau.) Most people I know live life waiting for the right moment instead of living life in the moment.

When I was much younger I met a young lady. I told her, “I want to grow old with you.” We had no income, we were both still in school, and we had no idea what the future held for us other than we knew we wanted to be together. We bought an engagement ring for $125 and on our wedding day we went to a supermarket and bought flowers to decorate the church. We lived day-to-day and never had much, but we survived. Yesterday, after our son got his third spinal shot of his chemo cycle and had to lay flat for four hours, we went out for dinner. We walked around Capitol Hill holding hands because long ago my wife told me she wanted us to be one of those old couples who still held hands, we are. We shared dinner at the Rhein Haus and then got two slices of pie à la mode at the pie shop on the corner. We laughed, we came close to crying a few times, and we talked about the future. Our plans for the future are to grow old together.

Yesterday afternoon I had lunch with two friends, Andrea and Justin. They are a young married couple who were both students of mine long ago. Even though my college told me while I was training to become a teacher that I shouldn’t smile at my students until Halloween and legislators believe that good teaching can be boiled down to test scores, I realized long ago that teaching is a relational occupation. I know that what my students remember from my classes isn’t intellectual but emotional. Of course students have learned a few things along the way, but what they remember is almost always an experience they had in my class. Justin said he remembered me drawing a picture of my heart on the board and dividing it up into sections for my wife, my kids, and then drawing a little dot and saying, “That’s the part for my students.” Of course my students know that I do love them and this was my way of letting them know where they stood in the hierarchy of love. (Yes, love is the right word because if you don’t love people you shouldn’t be teaching English. You can teach math though.) When lunch was over and I was heading back to the Oncology unit, Andrea handed me a bag of gifts. It was so generous and loving that I am still flummoxed. (If you want to see what a kind and loving person Andrea is you can visit her blog: http://www.handandtheheart.com)

And then there was last night, Dylan spent most of his day drugged up to avoid nausea. Around 9 PM, I heard Dylan call quietly for me. I sat up and saw he was reaching out his hand to me. “What’s up, bud?” I asked. He held my hand and said, “I love you.” He said a few other things too and I said, “There’s no place I’d rather be right now.” Sure, I wish none of this cancer stuff happened, but this cancer stuff has opened a world of love that I didn’t know was there.

So what have I learned in my 50 years? People are good. Life is short. Don’t wait.

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