Category: The Longest Journey

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.

Different Day, Different View

The familiar droning sound of measured chemo drugs dripping from the IV tower into Dylan’s chest port has returned us to this place: the 12th floor of Swedish Hospital in Seattle. A few things have changed since our departure, the Oncology floor is filled with patients which saddens me because when we left half the rooms were empty. Cancer has been busy while we were away. In each room there is a story of discovery, shock, and pain. We have a new room, a smaller room which Dylan has already decided isn’t big enough for the two of us, he said last night as he got up for one of his multiple trips to the bathroom, “We need to ask for a new room,” as if the Maitre d has given us the table next to the kitchen door. While the room is much smaller, it has a better view of the Cascade Mountains, so for me it is an equitable change.

The second round of chemo has started. Overnight, Dylan got filled to the brim with the drug he had the worst reaction to in the first round, so far he has not had a fever or needed pain meds, I’m sure that won’t last long, but for now, he is sleeping comfortably. This round he is getting eye drops every six hours, which he hates but there are a few new drugs in round two and one of them can damage the cornea of the eye so they are proactively providing his eyes with steroids to prevent permanent loss of eyesight.

The days we were home rushed by. For me there was a flurry of social activity, which was exactly what my doctor (who I see once every ten years) prescribed. Dylan spent his time between his three home activities, sleeping, eating, and playing video games. He was able to gain four or five pounds. It almost felt normal.

As we got closer to returning we talked about what round two would be like. He was a little anxious, not from fear, but facing the fact that for two weeks his life is going to suck hard. On the night before we left, he had difficulty sleeping and was pretty tired but both of us knew that once we arrived at the hospital there would be plenty of time to catch up on naps. Knowing what we are facing from the treatment aspect is reassuring, but knowing what is ahead fills the empty times with dread of what is around the next turn.

On one of the evenings I was home, I was outside getting something from the garage and I looked up. The dark blue skies were clear, the crescent moon lit the ground well enough to see, and a few stars blinked somewhere out there in the cold. I took a moment and spent time feeling my place in all this vast darkness. Here I was, one of seven billion people on a planet floating improbably amidst all this emptiness, while at the same time, surrounded by loving friends and family. This thing, this cancer thing, is a universe in itself, frightening, dark, and vast, but at the same time, this thing has brought more comfort and support than I believed was out there.

 

Axe Handles

A few days back, when Dylan’s throat was inflamed and any movement caused back pain and headaches, I said to him, “You know I’m really proud of how you have been brave through this whole thing.”

“I’m just laying here. I haven’t been brave,” was his response.

What is bravery? Is bravery getting up to brush your teeth when you can barely stand, all of your bones ache, and your throat feels like it is filled with hot rocks? Is bravery walking on the 12th floor with a bag of brown chemo drugs hanging from your IV tower? Is bravery losing 45 pounds and announcing you are going to start a weight loss website extolling the virtues of chemo? Is bravery taking 5 milligrams of Oxycodone instead of 10? Is it eating instead of getting hooked up to another IV bag? I think so. I think some of the bravest people I have ever met walk the 12th floor pushing an IV tower in yellow socks. (Swedish has color-coded patient-risk by socks: green socks=not going to fall, yellow socks=maybe I’ll fall and get hurt, red socks= get back in bed.)

Hospitals are places where people are brave each day. I have always known this, but it isn’t something I spent much time thinking about until faced with it. There is a reservoir of bravery stored up in each of us, in The Things They Carried by Tim O’Brien, he says he thought courage was like a bank account, he could make deposits by avoiding courageous acts, and when he needed it he could make a courage withdrawal. O’Brien comes to the conclusion that courage isn’t like that at all, you cannot store up more courage by saving it, by setting it aside, instead courage grows as it is used like a muscle. Cancer patients exercise their courage muscles each day. People who face potentially terminal illnesses are often told that they will come out on the other side of this trial a stronger person, which is true for those who survive, but there are people who fight and do not survive.

Yesterday, Dylan and I made the trip to Seattle for a blood draw and doctor visit. We had not been to the Arnold Tower Cancer Clinic portion of Swedish before so we got to town early and went looking for a place to eat a late breakfast. Dylan’s appetite has returned and he is finally gaining instead of losing pounds, but he is one of those visible chemo people: Gray, bald, and thin. We went to a small, clean café on 12th Ave to have something to eat. The waitress greeted us, and found a seat for us in the empty café. I could feel her nervousness. Chemo people are fragile and I didn’t help much when I said, “We need a safe meal. He is undergoing chemotherapy and can’t have anything undercooked or raw.” There were lots of options on the menu but Dylan wanted to be careful so he ordered scrambled eggs (well-done), 1/2 a baguette, and french fries. He wouldn’t risk coffee, water, or anything not assuredly germ-free. I talked him into some monkey bread and soon he was eating and enjoying food again. It had been five days since he felt so bad he wouldn’t eat: He had a headache, his spine hurt, and his throat was so raw he had difficulty talking. That night I read him some of my favorite poems. I started with Jane Kenyon who had written poetry right up until her early death from cancer and Let Evening Come is still one of my favorites. I talked about how brave it was for Kenyon to continue to write until her death. Kenyon’s writings reminded me of Stanley Kunitz who was still writing as he pushed past 90 years old, so I read his poem Haley’s Comet. For some reason, Haley’s Comet reminded me of Gary Soto’s poem Saturday at the Canal, so I read that one next. We (mostly me) talked about the feeling of being stuck somewhere when everyone else is leaving or moving on. Dylan’s college plans and work at Peninsula Mental Health as a Peer Support Conselor have all been placed on hold as he fights towards being cancer free. Life will wait for him to catch up and his battle with cancer might take him in a different direction, but for now his plans are going to have to wait. The final poem of the night was Gary Snyder’s Axe Handles. Dylan remembered the poem. I had a copy of the poem printed out next to my computer for many years to remind myself that I was an axe handle. (This statement will make no sense unless you read the poem, so read it. That’s why I linked it. Don’t be a poetry hater.) When I finished reading Axe Handles, Dylan said, “I get it. I remember that poem, and now I get it.”

That evening of poetry now seems long ago. As we went through check-in at the clinic, Dylan was worried about having a temperature, or a low blood count, or anything that might cause him to be admitted back to the 12th floor. His temperature was normal, he had gained another pound, and when the doctor finally came in to announce that his numbers had jumped from 1,800 to 20,000 we were overjoyed. Dylan was out of the danger zone. He could eat whatever he wanted. He didn’t need to take any meds. He could lick the sidewalk if he wanted to (well, maybe not). “You are doing great. Really good,” Dr. Pagel said. “So, let’s get started right away on round two. How does Monday sound?”

“This Monday?” Dylan asked.

“Yes.”

Dylan looked a little shocked, we had been prepared for March 6th, not March 2nd. “How about Tuesday?”

“Tuesday works for me,” Dr Pagel looked at his calendar. “Yep, let’s do it Tuesday. It’s going to be about two weeks and we are going to kick the crap out of you again, but you are young, you are strong.” And here is where I wanted to add, “You are young, you are strong, you are an axe handle.”

Home

Three weeks and one day, that’s how long Dylan’s first round of chemo lasted. Yesterday, around 9 am, Joanna came into room 1266 and said to Dylan, “Well, Bud, your counts are up to 1800. Want to go home today?”

“More than anything,” Dylan said.

1800 was a great number, we had been waiting to move over 500 and the progression from 0 to 30, to 60, to 100, to 190 was long and then, just as a few of the nurses had said it would, it jumped and we were suddenly out of the super-dangerous zone and into the go home zone.

I called home to get a ride, ate my last breakfast special in the cafeteria (until March 6th), and began all the detail work to prepare to get home. There were prescriptions to pick up, confusing directions about which meds to take and which ones were there for emergency situations, appointments to make (back to Seattle Thursday for a check-up), and then I began packing up all our stuff.

The nurse came in to remove the needle for his port (the port will remain under his skin until we finish chemo) Dylan took a shower and lost more hair (no pictures allowed, he is down to whispy-77-year-old man hair) and then we took some Oncology ward laps.  All of the nurses heard we were going home and there were lots of congratulations and hugs as we ran into Kelly, Nicole, and the rest of the staff.

The jeans set aside for Dylan to wear home no longer fit, losing 45 pounds does that, so he stole a pair of my basketball shorts and around 1pm we left the hospital where Howie Myers was born in the rearview.

The drive home was long. Dylan’s sensitivity to light and headaches have not gone away so he spent the last hour of the drive with a shirt over his head like a kidnapping victim. Getting home meant shaving the rest of Dylan’s hair and running out to buy several gallons of hand sanitizer and other “Dylan Only” supplies.

Then evening came and it was nice. It had been a long time since we all sat on the couch and watched The Daily Show. Dylan had an appointment to keep with his buddies on his gaming system and the rest of us went off to sleep.

The next week will be one filled with rest and reflection before we hit round two. Round two…let’s get ready to rumble.

Learning to Say Yes. 

Three weeks, it’s now been three weeks, we thought be would have taken Dylan home by now, but we haven’t. Instead we watch blood counts, brush the dead hair off his pillow more and more often, and wonder why his body hasn’t snapped back into place. Everyone assures us that this is natural, that these things happen, and then you go out into the real world and see people. I went home for a day over the weekend. I needed to pick up some things from work,  get fresh clothing that I assumed I wouldn’t need, and spend some time with my daughter, Emma. What fun stuff did I do with Emma? We changed the oil in the car and watched a movie that would have been good if it ended thirty minutes before it did. (Lucy if you are curious. It wasn’t great, but the last thirty minutes were not excusable. Let me just say if your movie ends with a flash-drive being delivered after 2,000 people have been graphically chopped up, blown up, shot, and disintegrated it is time to rethink the script.) My time at home was good, but it was short.

On my drive back to the hospital Emma and I listened to two things that are our things. We listened to Bambu’s new album because we will be attending his concert on March 11th and we listened to a Dear Sugar Podcast. (Dear Sugar was an advice column done by Steve Almond and Cheryl Strayed for the online lit site The Rumpus. If you are not familiar with the column or podcast, and can handle intelligent people talking about adult situations, I highly suggest it. You’ll laugh, you’ll cry, you’ll cringe.) One of the issues discussed during the second podcast was that there are two stories we tell: The story where we have it all under control, and the truth. This concept isn’t new to me but the past three weeks have been a combination of these two competing forces. I have found it easier to tell the truth in my blog, but as one of the guests on Dear Sugar said, “You can come out of one [truth-telling] closet, but you find you are in another one, and then you have to decide how much you really want to reveal.” So even my confessional blog pieces are hiding some of the real truths that sit below the surface and are either too embarrassing or selfish to share.

Telling the truth in real-time is more difficult. I can do my crying in the corner of room 1266 while I write and no one really knows, but it is tough to talk to people about the terror, helplessness, frustration, and reality of an unreal situation. I haven’t had to talk too much to people in this way because almost everyone I have seen over the past three weeks has been family or hospital staff, they know what is going on so most of our conversations center around Dylan’s health. Sometimes people ask about how my wife and I are holding up, but for the most part I haven’t had to do too much emotional heavy-lifting in public and as we move into the first month of this cancer thing it has become easier to be under control.

The first time I went home was a round trip, Seattle-Sequim-Seattle in the matter of a few hours, I was waiting on Bainbridge Island for the ferry to arrive. I got out of my car and walked over to the nearby coffee stand (if you haven’t traveled in the PNW walking to a coffee stand is like walking to a Paris Metro station, they are never more than 400 meters away). I ordered a coffee, bought a Seattle Times because I still like to get newsprint on my fingers, and picked out a day old pastry. The Barista did what every barista does, she asked, “How’s your day going?” It is a perfectly innocent habit we have in the US, we ask this question instead of standing there in silence, but the question hit me in the softest part of my body and I wobbled out a “It’s getting better.” By the time I got my coffee, my eyes were filled with tears and the Barista did her best to not notice, but then probably got on her Twitter account and sent a message: “OMG! Creepy Beard Guy crying at the coffee stand. #ABeardDoesn’tMakeYouAMan #TheCoffeeStruggle.” Since that time, I have only cried in public while sitting by myself in 8 oz Burgers and with my wife as we ran through the timeline of events while sitting in an upscale Mexican restaurant on Queen Anne Hill. The good news is that when you cry in public, people leave you alone. They assume you are either mentally ill, or a threat, so they turn away and wait for you get your act together. The other thing I have discovered is that I just don’t care anymore. Being pressed against the reality that your child may die is freeing and it begins to connect you to people who have been through the same thing. It is amazing how large the circle of cancer is. If you have not had a family member, or close friend touched my cancer, you are in a small minority.

When Cheryl and I entered into this journey we had a memorable discussion about how to handle this journey. This blog is part of that conversation, but one of the other decisions we made was to say, “Yes.”

So much of parenting and living is saying, “No, we have this under control,” even when everything is out of control. When we have had family challenges in the past, we have always hunkered down and kept up the illusion that we were managing. Sometimes we were managing, but there were times when we should have been willing to take help, but like an alcoholic we had to hit rock bottom before we could accept people’s generosity. This time we decided we would say, “Yes” when people offered. Yes, to meals cooked. Yes, to reading material. Yes, to help at work. Yes, to taking care of the dog. Yes, to the universe. Yes, yes, yes.

So, when Emma and were eating breakfast at the 101 Diner on Sunday and our waitress asked, “How are you guys doing?” I knew it wasn’t the generic question, it was genuine. Instead of saying, “We’re doing great.” I said, “It’s been tough. We are managing, but it kinda turns your world upside down.” She knew what I meant. Her son had cancer. He did not survive.

When I went into work to pick up a few assignments to grade I ran into one of my co-workers/friends there. He offered a hug, it was more of a demand than an offer, it was a good hug. He knew what I was going through. His mother had cancer. She did not survive.

My son has a form of cancer that is treatable today. Five years ago that was not true. Dylan’s treatments have been built on all the people who bravely fought against this disease and future treatments are going to be built on my son’s. He still has a long journey ahead of him, but today his journey has been made smoother by the lives that have gone before him. In ten more years Dylan’s treatments will seem like Dark Ages medicine, but for today it will do. Today, the universe has provided us a path to follow out of the cancer jungle. It is a path forged by those how have hacked their way as far as their legs could carry them, and for that we are thankful.

Guest Blogger: Momma

​Jon hasn’t contributed to the blog in days because we’ve come through those initial moment-by-moment swings of panic, denial, and reactions to the different daily chemo cocktails and their cruel/miraculous side effects that make for fascinating reading material. Dylan has come out the other end of the first round of the chemo meat grinder, and now we just wait. Hospital waiting isn’t the best material for writing. Yet here I am. There was a lot of pressure after Emma created her article on The Growl Online and Grandma Eekhoff crafted her contribution to the blog – I think at least 3 people wondered aloud on Facebook, “When are we going to hear from you, Che?” So here I sit with a pen desperately low on ink and a scrap of hospital paper – a la Emily Dickinson – ready to share my peculiar take on this crazy ride.

When you live a life blessed with love (like Beyonce and JayZ), luck (as Oprah says, “Preparation meets opportunity”) and fortune (although, teachers have NOT received a voter-approved Cost of Living raise in 8 years), devoid of Tragedy with a capital “T,” you have to wonder if it will change you when the 2-by-4 finally does crack you upside the head. Will you maintain the inappropriate sense of humor you’ve nurtured over a lifetime in the emergency room minutes after the word “cancer” is dropped? Unfortunately for the staff at Olympic Medical Center and Swedish Hospital, yes.

It’s come to my attention over and over again that, as a family, we share an uncommon sense of humor. As toddlers, my kids recognized my shouting, “NO PICKLE FOR YOU!” as an awesome Seinfeld reference, but it frightened their friends. Go figure. One time, having lunch with pre-teen Emma and her friend Allie, Jon started the meal conversation with, “So, Allie, Emma tells me your dad is a pirate.” We don’t see Allie much anymore. And within minutes of being told by the multi-tasking ER doctor without a personality, “We’re going to have to take another CT scan. Their concern is it might be cancer,” I was sarcastically choking through tears, “This is so f***ing stupid. I thought we were here for an enema.”
​I can see the faces I’ve shocked over the past three weeks at Swedish: Dr. Pagel (varsity cancer rock star and chemo cocktail mixologist) stopped in his tracks when I told him my mother-in-law had been checking up on him online, and she approves. RNs Beth and Stephen had to pause when Beth saw my knitting project – the 2nd in a pair of socks – and mentioned she could just never finish a 2nd sock. I replied, “I know, right? Thank God my son’s in the hospital so I can finally knock this one out.” The people who don’t think this material is funny also wouldn’t find humor in my husband asking Dylan if he’s taken his meds/shower/ laps around the ward and Dylan answering back with a weak middle finger. They might even cringe at a mother who tells her son to stop being a baby as he cries for morphine to dull the pain of the violent battle going on inside his body. He’s 20 years old; you can’t call CPS. Some folks do get it. Dylan’s favorite nurses (actually, they’re all his favorites) are the ones who pitch him crap, poke fun at him when he’s weak, laugh with him over the tragically mis-ordered lettuce and jelly sandwich that appeared to our horror one day. I can’t imagine a day, even on the 12th floor at Swedish, without several-many guffaws. Life is full of so much irony, silliness, fun, and joy – every freaking day!
​A couple days ago, my brother (who I adore!) caught me as we were both headed up to Dylan’s room. He asked me something like, “Well, are we putting on a mask?” He caught me off guard and I didn’t answer him directly, which probably told him, “Yes, let’s put on those masks and please don’t refer to said masks in the future.” What I should have said was no. No. This is no mask. This is how we do life. This is me trusting completely in Dr. Rockstar and his team. Calling more frequently on the God I had been a little neglectful of in recent years. Accepting love and encouragement from family and friends. We do cry – even weep. But I can’t dwell there. My family can’t dwell there. This is how we deal with this little detour. So, no, I’m not wearing a mask. Mask-es?! We don’t need no stinking mask- es!

Different Day, Same View

It’s 6 AM and I am sitting in the same squeaky chair in room 1266 that I have blogged from for the past two and a half weeks. I have a routine: Wake up, walk down the hall, make a pot of coffee, get my iPad set up next to the window so I can see the sunrise on Rainier, and write about how things are going. Yesterday was a day filled with mini-meetings preparing to send us home and then…well, here I am. Most of Dylan’s counts have come up but we aren’t going anywhere until one of his counts rise to 500. Yesterday they were at 60. The day before they were at 20. At this rate we’ll be home by July. (I don’t remember which count we are waiting on because everything has turned into a Kafka short story where two people are trapped in a hospital.) He is nuetrapenic which means his immune system can’t fight off the weakest of germs. At 500, he should be able to tolerate being in the real world. Not the real world with germy little kids, but the real world where he can sleep in his bed and everyone in the house puts hand-sanitizer on every three minutes. He has not been off the 12th floor in two weeks.

How long have we been here? I am allowed to get my shower towels out of the Staff Only room, almost all the patients in the neighboring rooms have left and a new group of cancer patients have arrived, nurses who have been on vacation for a week see Dylan and say, “Wow, you look great” and our walking laps are spent talking to staff who know us both by first name.

Some good things have happened in the past two days: Dylan’s weight has stopped falling like the pressure in a New England Patriot football, Amy brought us another round of amazing food from Assaggio Ristorante, I found out how to get to Top Pot Donuts without getting lost, Dylan had a great visit from the Art Therapist, and we continue to find out we have some amazing friends/acquaintances/family. Dylan also met a patient with the same form of Non-Hodgkins Lymphoma he has who is now on his third round of chemo. Dylan was able to ask lots of questions about what was in store for his future and the two of them shared their diagnosis stories. The lesson to be learned was that if some part of your body starts to swell, get it checked out.

The worst part of the last two days is that his sore throat has come back like The Expendables 2 and 3. (Tag Line: Nobody wanted it to happen, but it happened anyway.) The sore throat has him feeling like we will not ever get released, but to be honest, I would rather have him here while he is having the throat issues simply because they know how to treat this side-effect better than I do. (My treatment for a sore throat is a lecture about eating right and gargling with salt water. Neither of those treatments work well because Dylan has heard the lecture before and he won’t gargle.)

One of the final bars to clear before being released is learning how to give Dylan a shot in his belly. I learned a few things about giving someone a shot in the belly while watching a video on self-injection: 1.The entertainment value of self-injection videos is pretty low. 2. Making fun of the video does not make the person who will be getting the shot feel any better. 3. My son doesn’t want me giving him a shot if I can’t be more serious. 4. There are a number of people in my family who are more trusted to give a daily shot than me.

All indicators point toward being home soon, but this is a long journey. We still have at least three more of these stays ahead. They might be easier, but they could be more difficult. Some people say the first round is the most difficult because that is when the tumors are the largest, other people say the second round is worse because they up the dosage on the chemo. We will see. Every patient reacts differently and if there is one lesson I have learned it is to be here now and not worry too much about what is ahead. When life knocks you down and kicks you in the teeth, the future is an hour ahead not a month away. I will probably need to be reminded of this once we are out of the woods, but instead of Thanking God It’s Friday I’m thankful that my son is here today.

Guest Blogger: Grandma

Editor’s Note: My mom watched over Dylan one night last week and I asked her if she wanted to write about her experiences. She said she would think about it and then she sent me a 50,000 word (this is a slight exaggeration) Magnus Opus. My mother lived when people actually read Victorian novels for fun (Victorian times) and tends to tell five-minute stories in twenty minutes.  “Your cousin, Leroy, his wife is Jane, they have the three kids with eleven toes, the ones who live in Kansas, you know, we visited them in the summer of…what summer was that Dave? No, it wasn’t. Aunt Martha was still alive then and she was there, so it couldn’t be then. Anyway, Leroy bought a pipe wrench.” Most of her stories are a combination of who is related to who and arguing with my father about some minor detail for so long that we all forget what she was talking about in the first place. The full text will be available when the BluRay is released. Now, with that said, I love my mom and her quirky storytelling. (Side note: Dylan was told yesterday that we could be sent home for a few days starting today or tomorrow. Here’s to hoping the next time you hear from me we will be home.)

This family portrait was a few years ago, I'm the cute one on the far right...my head is the same size but my body is a little bigger.

This family portrait was a few years ago, I’m the cute one on the far right…my head is the same size but my body is a little bigger.

Dylan has been the grandson that we have lived closest to as he and his sister Emma have grown up. When we first moved to Port Townsend, Dylan was about 8 months old. He was tired and pretty cranky and I was able to sit and rock with him. It was pure joy just to be holding this guy. It is a little difficult to do this now but on occasion he will say, “Grandma will you rub my back?” And what’s a Grandma to do but rub his back! As he grew, he loved to be outside and had this great imagination. We have a huge split boulder in our backyard. When Dylan was younger he would grab some tall grasses and go “feed the dinosaur.” I don’t believe he was ever outside without a stick or something in his hand. He seemed to be in perpetual motion. He knew where the toys were kept in the closet or would get out a game to play. I think his favorite were the Army Men that used to be his Dad’s. He enjoyed going up the trail to explore the neighbor’s bird sanctuary. His favorite thing to eat was a tuna fish sandwich and plenty of fruit. As he grew older, he helped chop and carry wood, go with Grandpa to get a loads of dirt and dump wheelbarrow loads in the garden area. He was not afraid of hard work and sure helped us out. We made many trips to see him play basketball in Sequim. I had thought my bench sitting had stopped with my own 4 but when it comes to grandchildren, there is nothing more encouraging than to be there. There have been some down times as well for him. He might come over and would soon be asleep on our sofa. I am not sure he is fed mashed potatoes at home so when he comes I always make twice the amount needed for he will eat it all. I have been so proud of his writing-especially when he was published in the TIDEPOOLS 2012 Issue Art Lit and Music publication pg. 63 from Peninsula College when he was in High School. I know that at some point Dylan will again be contributing his own unique style in his creative endeavors. It has been great fun to see him develop into the individual he is and to be able to share in his journey in a very small way.

So when I was asked to be the designated Dylan sitter, I felt I could check out the staff and care of another hospital. I was not disappointed. I did not sleep much, that was not due to the fact that it was uncomfortable but that Dylan was doing his best to keep me up all night. I think he thought, well we will see how well Grandma does with this business of being in the hospital. The hospital bed was one where when you sit down it moves and changes and when you change positions it moves again. I felt like I was on a raft in gentle water inflating and deflating. So every time I got up, it changed. I had expected to fall asleep but soon Dylan was up to the bathroom. You see, his kidneys are back again to functioning and they were pushing fluids per the port to get his system down to normal levels. I know that he was up every hour to hour and a half all night long. That takes energy and he was just a real trooper. I don’t think he had to call me to wake me but he would start to get out of bed and I would hear him and I was soon up too. He needed to put on his slippers, unplug the IV pole, walk a few feet, open the door and push the IV pole into the bathroom, close the door and pee. This was the routine all night long.

Morning came with clouds covering Mt. Rainer. I had hoped that one of the benefits would be a clear view of the majestic peak that thrills me whenever I see it. No dice. Dylan was sleeping so I told the nurse Tanya that I was going down for breakfast. I took my book and read while I ate scrambled eggs, bacon, and drank some decaf. It was very quiet in the place—some of the maintenance staff were there and a lonely security guard. I read and ate. went back up to the room and was very surprised to find Jon and Cheryl back by 8:30AM. I was greeted by Jon saying, “Dylan said you passed muster.”

I am indeed as impressed with how my son, Jon and daughter in law Cheryl, granddaughter Emma are responding to this difficult adventure that has drastically changed their life in a few short moments time. Even in this God’s Blessings flow.

Guest Blogger, Dylan Eekhoff: A Burst of Air

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“Let me know if there’s anything I can do for you.”
I’d like to try to address this statement, seeing as I’ve been hearing it often since my diagnosis. I appreciate the overwhelming support I’ve been receiving, I really do. I just don’t like this statement. Although sympathy and attention are both pleasant to receive, I feel like I might be getting too much.

Here’s why: I’m probably not going to die. I say probably because spontaneous human combustion, although not overwhelmingly so, is a possibility. Google spontaneous human combustion. Unlike spontaneous human combustion, the kind of cancer I have is treatable. I feel like there are a million other people on this earth who deserve the prayers and kind words rather than me simply because there are a million other people who have been diagnosed with worse.

I’ll try to keep the butthurt bellyaching to a minimum from this point forward.

I don’t really know what to write now. I’m sure everyone has questions, none of which are stupid or unanswerable, but I don’t really know what to say. So, I guess I’ll start with what it was like to be diagnosed with cancer as a 20 year old whose outlook on life was finally looking hopeful. Initially, my diagnosis was the source of a lot of negative energy. I didn’t feel like my life was over, but I felt this overwhelming anger that sent me into somewhat of an episode of depersonalization/derealization. There was a lot of denial and self-loathing in the first week, a lot of wishing, and a lot of pain. I think I went a week without laughing or enjoying anything. It was also a week before I could really appreciate the support and kindness that was being sent my way via social media and prayers. I’m not a particularly religious person, but I do believe there’s some space magic afoot after I held hands and prayed with one of the hospital’s chaplains.

I want to be able to honestly say that I’m feeling great as of now. I want to say I’m feeling like a million bucks, but a more realistic appraisal would be somewhere in the range of $100,000-$250,000, depending on the day. I’ve accepted that the next few years of my life will be spent cautiously. I’ve accepted a lot of things. My sense of humor is gaining traction. I can get in and out of bed without assistance. I’m not constantly in pain. My only complaint is that my brain feels as if it is operating at less than half of what it’s capable of. It’s taken me more than a day to type this up, not just because I don’t know what to say, but because it takes an insane amount of effort to stay focused. What I’m experiencing is known as “post-chemotherapy cognitive impairment.” My fine motor skills I’ve developed have decayed quite a bit, resulting in a low typing speed, which is only made worse by the fact that I sometimes forget what I’m thinking as I’m typing. My vocabulary isn’t what it used to be. Multitasking is impossible. I do, however, have a good feeling about this. I don’t want to jump the gun and say I’m kicking ass and taking names here, but as of now, I feel like I’m back in control and getting through this is not a matter of, “if,” but, “when.”

Segueing has never been my forte, so I’m just going to jump into something else without reason. I was playing at my friend’s house one day when I first experienced what it was like to be convinced that I was going to die. I might have been in 1st or 2nd grade. I was over at Kevin Beese’s house playing on what could be the most magnificent buoy swing ever created. Now, I realize that the seeming immensity of this buoy swing was relative to my size at the time, and I might be disappointed if I were to revisit it, but I can see it in my mind’s eye with perfect clarity: a bright orange boat buoy suspended on a tree branch maybe fifty feet off the ground, then a thirty foot hill behind with tire steps to the top, and below all this was a large clearing with a little shrubbery and a blackberry bush in the middle. We would take turns jumping onto the buoy from near the top of the hill, swinging dangerously high back and forth from the hill to the clearing. One of us had a genius idea to not sit on the buoy as we swung, but to hold on for dear life while our feet dangled. We referred to this as “Supermanning,”I believe. Most of our Superman launches went without a hitch, until the one time I lost my grip above the clearing. I have no idea how far I fell, but I remember landing on my back on the edge of the blackberry bush. This knocked me unconscious for a few seconds, and when I came to, I couldn’t breathe. I had no control over my body, and as I impatiently waited for my lungs to begin functioning again, I was fairly certain that I would die right there in the blackberry bush. Of course, I didn’t, and as Kevin stood over me and asked if I was okay, I regained control and a burst of air shot into my lungs.

This, coincidentally, was what it was like to be told I have cancer. When I received my diagnosis, I went back to the blackberry bush, laying motionless with no feeling in my extremities, feeling as if a 500 pound weight was lying on my chest. I’m not sure exactly when, but sometime recently, I heard Kevin ask me if I was okay while a burst of air shot into my lungs.

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