Month: March 2015

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.

Bambu’s a Party Worker, but Conner’s a Piece of Work.

Bambu and his Party Worker album landed on stage at the Crocodile last week. If Bambu and DJ Phatrick had produced this album in 1950 (highly unlikely since the hip-hop scene in 1950 was limited to the guys who produced Refer Madness) they certainly would have been called before Senator Joe “I see a commie” McCarthy (R Wisc.) and his House on un-American Affairs Committee. (Wisconsin has a history of electing idiots to office, for example, the current republican governor, Scott Walker. A diet of cheese and Packer football does have side effects.) Party Worker is an ambitious thematic album set at an organizational meeting where each guest rapper represents a different member of the working class, in other words, communism. (At least this is how Faux News would view the show, and since I am currently slipping closer and closer to their primary demographic–old, white male–I thought I should start using the proper verbiage.)

Bambu was in Seattle to perform and sell albums (more capitalist than communist, but a man has to eat), and I was in Seattle on a school night because I am a bad parent and my daughter (Emma) has spent the last six weeks of my son’s chemotherapy being largely ignored, so when she asked to see Bambu’s show I could not refuse. (Bad parenting is full of sentences that end with…I could not refuse.)

The Crocodile is a Seattle landmark club in Belltown where everyone who is anyone eventually performs, so Emma and I have been there several times. We had a plan, and it was a good plan: eat dinner, get tickets, hang out at the dirty coffee shop, see the show. The plan got derailed right away as I spent 40 minutes driving around in circles looking for a place to park. Belltown is a popular place and unlike Capitol Hill where everyone rides a fixed gear bike, people in Belltown drive cars and so by the time we got to the restaurant I was a little grumpy.

As we entered the restaurant we were confronted with a question from the hostess, “Are you here for the show, the thing in the back, or dinner?” We were there for dinner. “Well sit where you like then.” Emma and I took a booth against one of the walls and within 30 seconds I was ready to leave. There was a small group of people testing a sound system by saying, “Test, test, test…” while walking up to the speakers and getting Jimi Hendrix levels of feedback. It was annoying, but not as annoying as the group of people who were arriving for karaoke (aka ‘the show’). There are two types of karaoke, regular drunk karaoke where everyone knows they suck, and then there is the type of karaoke where people show up in costumes and think they are the next Susan Boyle. People were showing up in costumes. I turned to Emma and said, “If these people start to sing, I’m leaving. I don’t care if we haven’t eaten yet.” One guy, in a full length Liberace jacket, was walking around the restaurant randomly testing how loud he could sing high notes, I don’t know if he was trying to psych out his karaoke opponents, but I do know that people who “warm up” for karaoke have an emptiness in their hearts only matched by the emptiness in their heads.

Liberace continued to roam around looking for attention, but what started to interest me was “the thing in the back.” Youngish guys wearing backpacks kept coming into the restaurant and telling the hostess they were here for the thing in the back. They would walk by “the show,” past the bar, and through a red curtain covering a doorway. These guys fit the profile. There was a disaffected, lost quality to all of them; outsiders not accepted by society and forced to meet secretly in a Slavic Belltown restaurant. Had I fallen into a secret meeting place for terrorist cells? Were these guys plotting? Were they falsifying passports? Should I call the FBI? These questions lingered until my food arrived and then I forgot about the burgeoning terrorist plots of losers in the back of the Slavic restaurant.

The food was good, the bill came, and we escaped the restaurant before the singing officially started. As Emma and I walked around the corner, I saw two of the karaoke singers hiding in a doorway smoking a joint like they were Miles Davis preparing for a concert. Their attempt to hide made it obvious that they were doing something naughty and when I looked to see what other nefarious activities could be taking place in the vicinity, I saw what the “thing in the back” was. A curtain was drawn back just far enough for me to see the disaffected group of young men huddled together. They weren’t plotting, they weren’t falsifying passports, they were playing video games.

We arrived at the Crocodile, got our tickets, and were let into the venue. This was an all ages show, so anyone under 21 had to stand in an area the size of an elevator to the right of the stage and the rest of us were free to wander to the bar and drink beer from plastic cups. I found a dark corner with a seat and did what I do at concerts, waited and watched. As 10 PM approached, the crowd grew and my personal space started to shrink. This is when Conner came bee-bopping into my life. Conner was a little guy, we were never formally introduced, but because of who Conner is everyone within ten feet of Conner got to know him. Conner was wacked out of his gourd. He was smoking something from one of those vapor pen devices that caused him to have an excess of energy; whatever he was smoking caused his buddy to vomit in a nearby trashcan. Conner didn’t vomit though. Conner jumped around, bumped into people’s drinks, and generally annoyed everyone. I don’t know Conner, but I am going to guess a few things about Conner: 1. He rides a motorcycle, 2. He carries his motorcycle helmet wherever he goes so people know he rides a motorcycle, 3. Conner spent a good part of his high school years getting stuffed in lockers. At one point, Conner sat next to me. He had a girly drink from the bar. How do I know it was a girly drink? It had a straw and ice. After Conner finished sipping his drink, he began taking the ice cubes and tossing them at people’s legs in the crowd. This gave Conner such a charge of joy, he looked over at me for approval, I gave Conner the “get off my lawn” old man look, and he got up and ran away. Of course, Conner spilled the remains of his drink and ice on the bench before leaving so the next four people who sat there got wet pants.

While Conner focused on the “party” portion of Party Worker, Bambu took the stage and left no doubt that his allegiances were with the workers attending his show. His lyrics bend towards issues of social justice and equality, and his performance was a celebration of his working class roots. The set began with tracks from the Party Worker album which I am certain won’t be played at the Mitt Romney for President 2016 rallies. Well, to be honest, there probably won’t be any Party Worker tracks played at any of the democrat rallies either, unless Elizabeth Warren wants to attract the hip hop demographic to her campaign.

My favorite part of the night was when Bambu was joined by DJ Nphared and Prometheus Brown on stage. For those of you not as hip as me, this trio is known as The Bar. I saw The Bar at my first hip hop concert, so when they began their song Rashida Jones it was like a little journey down memory lane for me. Bambu and Prometheus Brown have mastered the art of emcee stage presence. There are some standard movements for all emcees: pointing with non-mic hand, non-mic hand raised above the head, march across the stage to the left or right non-mic hand pointing at crowd, and then there is the jump straight up and down while bouncing the non-mic hand like you are patting a dog on the head. The more difficult mc moves are combinations of the above moves, but also involve spins and Janet Jackson Rhythm Nation chopping motions with the non-mic hand. (Don’t try this at home if you are too white, or uncoordinated, you might put an eye out.) I have begun to believe that 1/3 of the show is stage presence and both Bambu and Prometheus Brown have that 1/3 down.

After the set by The Bar, another emcee came out, but she did not want to be known as a lady emcee, she just wanted to be known as an emcee, so I won’t assign a gender to her. She also said that everyone should love each other for who they are and I was feeling all warm inside…then she began to rap. Let me just say, her message to the audience and her rap lyrics didn’t seem to be from the same person. Maybe this was a paradox, or irony, or maybe even a juxtopositioning, to hyperbolize her situation, but her set confused me. I’m not saying she didn’t have energy and a message, I’m just saying that I am probably not her target audience. My daughter liked her, so there you go.

Bambu closed the show by telling us to go out and change the world. Don’t wait for the change to drop by and invite you over. Go out, organize, and change things.

Taking my 17 year-old daughter to a hip hop concert on a school night might not get me the Redbook Father of the Year Award, but when I think about what I want my daughter to know about the world, I am happy that she has these experiences. True learning isn’t something that takes place only in a classroom, it isn’t something that can be boiled down to a few stupid test questions, it isn’t something that can be learned through reading, it is something that must be experienced.

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.

Most Inspirational

At every high school awards dinner there is a moment set aside for the kid who never got in the game but stayed on the team waiting for their moment of greatness. Anyone who has been on a team knows these kids are the glue that hold the world together, they show up to every practice, give their best, and know that after the buzzer sounds they will not have to shower. The award these kids receive at the end of the year is: Most Inspirational. (I was the Most Inspirational player on the 1981, JV basketball team in Lemoore, CA. Not bad for someone who averaged .02 points a game.)

Blogging is a hobby set aside for weirdos, egomaniacs, and the Illuminati. Bloggers sit in a little room, or a Starbucks if they are an egomaniac, and type words onto a screen and then at some point they hit a button that publishes their ramblings into one of the internet tubes connected to their home. I have operated this blog for a couple of years now and it is not what would be called a wildly successful blog, but like all great things in life, my blog is an acquired taste.

Scott Nagele is a man of fine taste who operates a blog from a secret lair buried deep in a bunker somewhere in the upper midwestern part of the United States. How do I know Scott has fine taste? Well, he nominated my blog for the Very Inspiring Blogging Award. If you haven’t read Scott’s blog because you are hidden in a secret lair buried somewhere in the upper midwestern part of the United States, or you live in Kentucky where reading is considered a “special talent” then I suggest you check it out: http://snoozingonthesofa.com. Scott has three young boys, a very understanding wife, and a funny blog. Scott and I share a love of writing, reading, and walking faster than anyone else in our family.

Scott broke almost all the rules of the blog award and so I will continue this tradition of anarchy. According to the rules I should write seven things about myself and then nominate 15 different bloggers…is there anyone who reads 15 blogs? No, I mean really reads the blogs, not just hitting the like button like most bloggers do to maintain the illusion of following the blogger. (I refuse to play this game, so if I follow you, I really follow. Which is probably one of the reasons I run a highly unsuccessful blog.) Oh, I have also decided to write seven embarrassing facts about myself instead of seven facts about how awesome I am.

Seven Embarrassing Facts About Me:

  1. I once told some of my friends that The Fine Young Cannibals’ album The Raw and The Cooked was the greatest album of all time.
  2. I cry every time, EVERY TIME, I watch Life is Beautiful. The first time I saw the movie I was supposed to meet some friends at the theater, I bought my ticket, found a seat, and my friends never showed up, so I was in the theater by myself crying like a junior high girl at The Fault in Our Stars.
  3. I spent three years refusing to wear socks and never tying my shoes. This might have been okay if I was two, but I wasn’t.
  4. When I was about 13, I thought I had a pretty good singing voice. To test out my thinking I got a tape recorder, put on headphones, hit record on the poor tape recorder, and sang along with Kenny Rogers and Dolly Parton as they belted out Islands in the Stream. What I discovered was that I did not have a pretty good singing voice.
  5. I tried to sneak into a thermal springs in Rotorua, New Zealand with a large group of Japanese tourists. Everyone at the hostel told me to just blend in with a group and walk through the gate.  I’m 6’6″. It didn’t work. The the big Māori guy at the gate was not impressed.
  6. For two years in high school I got my hair permed. I would go to the beauty parlor every two months and get my hair put in curlers. Then to up the stupidity I decided that I wasn’t going to comb or brush my hair any longer…my senior pictures are pretty special.
  7. I had a choice to take piano lessons or play little league baseball when I was 11, I took piano lessons. I still think it was the lesser of two evils.
If you can blog with one of these machines you are a inspiration.

If you can blog with one of these machines you are an inspiration.

My 15 Blog Nominations (Where I live the blog exchange rate is 4 to 1). 

Now, all four of these blogs are actually successful, and therefore free to ignore this nomination, but I thought my loyal reader might want to see what a real blog looks like. (These folks also have offered much kindness during my son’s illness so they were bumped up from good bloggers to good people.)

Up first is Andrea’s blog. Click here to be magically transported —> http://www.handandtheheart.com  Andrea has a way with words and has one of the most honest writing voices you will find. She is also pretty nice in real life.

Next is Bill’s blog. Click here to go there —-> http://pinklightsabre.com  Bill can write. He writes it all: poetry, short stories, opinion pieces, gut busting humor, and probably recipes too.

Ross runs a blog and lives in Canada (therefore, constitutionally required to be nice to Americans). Here is the linky-do ——> https://rossmurray1.wordpress.com Ross kills it. He is the funny, insightful, and one of the most supportive blogging friends a blogger could want.

Finally, is Dina’s blog. Dina is an American who lives in Denmark (in other words, my role model). —> http://wineandcheesedoodles.com  Aside from the fact that I want to run away and live in Denmark, she is another blogger who can really write.

That’s it kids. Thanks for dropping by and make sure you tip at least 15%.

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.

Cancer Realities

The third day of chemo finally caught up to Dylan’s strength. He was too tired to shower, he skipped lunch, and spent most of the day sleeping, but it was a natural sleep, he hasn’t taken any pain killers heavier than Tylenol and the only requested comfort drugs have been for nausea. So, things continue to go well in the relative world of cancer treatment.

We did get a ray of hope when Joanna visited yesterday, she said, ” Looks like you will finish chemo on Sunday, so maybe you will get to head home on Monday.” Both Dylan and I were surprised, Monday Monday, like this upcoming Monday? Yep.

Dylan said he didn’t want to get his hopes up, but it was good news nevertheless. He still has a spinal shot to get through today and last round’s spinal seemed to trigger the terrible headaches and cause his severe back pain, but he has done the difficult things, the things that are small but turn into large things, like rinsing his mouth with saline each time he gets out of bed, like walking the halls when he says he can’t, like eating when he feels like he might vomit. His resolve this time around has been forged by hot fires.

Yesterday, as we walked the halls in the evening we talked about the difference between round two and round one. He wondered if the remaining rounds would go like this and I began talking about the possibility of me returning to work between treatments if things went well. With all the hopeful unknowns left floating in the air we returned to our small room in the southwest corner of the 12th floor. We walked by one of the rooms that had been busy with visitors and family for the past two days and when we closed our door behind us Dylan said, “That’s why I don’t look in rooms.” I had seen a nurse hurrying a portable toilet to one of the rooms with an older person and assumed Dylan had seen something I missed, but it wasn’t that, “There’s a body bag in the room across the hall,” he said.

This morning the room is empty. A cleaning crew is sanitizing the entire space.

All of the pieces fell together for me, it isn’t important to know what happened because it really isn’t any of my business but yesterday the hall was full of a number of people crying on cell phones. It isn’t unusual for people crying into cell phones here, I have been that person, but looking back I did notice many people who I had not seen before and a number of children who were new to the 12th floor.

It isn’t unusual to have large family groups with children on the floor, but most often those groups are here on the weekends and spend most of their time in the family room watching cartoons because it keeps the kids quieter. I didn’t think about it being mid-week, or even consider the possibility that cancer was about to claim another victim, just like the many times I drove by Swedish saying, “That’s Swedish. Howie Myers was born there,” I hadn’t been in tune with other people’s suffering even though they were right across the hall. The truth is earlier in the day, for an hour, I was mad at the people in the hall because Dylan was trying to sleep and they were making noise. I thought about walking out there and getting self-righteous about my son with cancer trying to sleep; in the end being a coward allowed me to be a jerk in my head without being a jerk in the oncology hallway.

I don’t know much about the person who died other than they had a young child: A hospital crib was set up in the room. There was time for people to say goodbye, but that doesn’t make it any less tragic.

I never met my mother’s mom, Grandma TenPas. Cancer took her when my mom was six or seven. I didn’t know much about what happened until last year when I finally asked my mom about what she remembered about her mother’s death. Her mother got sick, my mom was sent to another house to be taken care of and then her mother died. She hadn’t been told that her mom was dying. She was sent away and while she was gone her mother died. Cancer took people suddenly in those days. No kids allowed. Times have changed.

I wonder now if my mother’s decision to become a nurse (her oldest brother became a doctor) was a product of this tragedy. Like many kids, I was curious about who my parents were before I came busting into their lives and making demands, but my curiosity was a selfish curiosity. I wanted to know the details that made my parent special. If my parents were special, I could then project my “specialness” into this world with so few special people. I spent hours looking through their yearbooks and smattering of pictures from the years before I existed. I pawed through black and white photos hoping to find something that would prove my parents lived a life of glamour before I was conceived. There wasn’t much evidence supporting this premise and there was very little I could construct from my limited sources. In the end, much of what I know about my parents is a mix of fact and fiction because there is no real way to know the truth. There are stories, there are memories, but like the black and white photos so much of what is remembered has been washed out by time. It isn’t important because I know longer hope for special parents in the same way I did as a child, now I am happy to have kind and caring parents who tolerated me.

Last night, after death passed so close by, I read to Dylan. We started with a few essays by Ross Murray to lighten the mood and then dove into A. R. Ammons’ poem Corsons Inlet. The poem describes the poet’s attempt to classify things as he walks along the shoreline. He discovers the things that seemed so separate, so distinct, are, on closer inspection, really not distinct at all. This world he tried to classify and order is not orderly. Then the poet notices how everything works together, each bit of chaos relies on another bit of chaos to support life. In the end, Ammons says he will be back again tomorrow, everything will have changed but everything will look as if nothing has changed. It is a longer poem and a lot to swallow in one reading, so Dylan and I talked about it. The divide between life and death seems so distinct and from where most of us sit, it is, but when death is close the divide falls away. I don’t mean life and death are the same, I mean that life is fragile and death surrounds us.

Today, the sunrise was glorious. The room across the hall is ready for a new patient. The nursing rotation is taking place and everything feels the same, but somewhere close to this place there is a family who will remember March 5th, 2015, as the day their friend/sister/aunt/mother stopped living and passed into another realm.

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.

%d bloggers like this: