Lying on the floor next to Birkie-dog, my hand moving up and down on her chest with her breath, I feel her gentle heart beat as we fall asleep on the carpet at the foot of our burlwood bed.
I open my eyes and the large round camera silently snaps photos of my heart pumping radioactive blood in a dark room at the University of Washington Hospital.
My eyes close and mind opens again. I’m driving my Ford Ranger truck camper and turning toward the Kenai Peninsula. It’s sunny and I feel the anticipation of pushing my boat into the water, rowing down the blue water, hearing the glacial sediment on the bottom of the wood hull and feeling that first tug of a trout on the end of my line.
“We’re done with the second round of photos,” Missy, the friendly radiologist announces, snapping me out of my beyond-a-dream vision. “Just one more to go… “
She repositions the camera, and steps away.
I’m standing on Powerline Trail in the snow looking at Jenny. Every strand of her blonde hair blowing gently in the breeze in focus. I embrace her and look over her shoulder through the river valley at rocky white peaks back dropped by deep blue and striations of white clouds across the sky. “Whatever happens, I will always be here in this place and in this moment. I will be in the wind, in the water, in the trees. If you ever need to find me, I will be here. I love you and always will.”
“We’re done!” Missy sits me up, pulls the IV out of my arm, and sends me back to the waiting room where I reunite with Jenny. The nerves set in. My ejection fraction (a measurement of heart function) must be above 50 to proceed with the chemo that gives me the best chance at getting to remission. I’ve had a lot of heart-stressing chemo in my life. Last two tests came in at 50 and 55. This one could be close. Results will come in the next 24 hours. The waiting game is underway to determine if my heart is healthy enough for abnormal chemo activity.
It’s been one hell of a couple of weeks and a long road getting here. At first, we weren’t aware of any decent treatment options and I found a strange comfort and peace in the idea of not fighting, of enjoying my last weeks or months at home in Alaska, of hiking every day in the mountains that my body allowed, then slowly fading at home surrounded by the Birkie-dog and people I love.
But then we found out that there are options in Seattle that gives me a chance. Not a great chance, but a chance nonetheless (maybe 1 in 5). Jenny and I then proceeded to have a long discussion, including input from many of you, about whether it was worth fighting. About what dying well looks like. About the risks of dying miserably in a hospital fighting versus spending my last days surrounded by the people I love in the comfort of home. It’s one of a few tough conversations I believe we don’t have enough of with one another.
Some might think that my first transplant failed because the leukemia came back. I can’t view that as farther from the truth. That transplant gave me six of the best months of my life. It gave me the best 11 days of my life driving back to Alaska with Jenny, the opportunity to catch my first grayling and king salmon, to have tearful reunions with our found-family and friends in Alaska, to go on adventures with them in the mountains and on the rivers I love, to take my first float plane ride, to experience the majesty of the Tongass National Forest, to see the Arctic Ocean, to stand with a life-long friend marrying the love of his life. It gave me six more months to laugh, to love and to live – and I cannot be more grateful to the doctors and to my Dad (my bone marrow donor) for making it all possible.
And as awful as the thought of starting over again, of getting blasted by chemo, of spending nights writhing in the pain of steroid withdrawal, of weeks pissing and shitting blood, of the thirst that comes with going a week without being able to swallow water or even your own spit without choking – I realized that even more terrifying is the idea of dying not knowing if I could have had six more months, or even two, five, or fifty years with Jenny and the people I love here on this earth had I not given it one last shot.
And so yesterday Jenny and I sat waterside in Seattle, waiting for a phone call or email that would say if my heart had anything left after getting hit so hard for so long. We walked the sunny streets of a city foreign to us doing our best to calm and comfort each other through the waves of fear, anxiety and depression. To constantly step back and savor every moment of being outside, being free, being alive and being together.
When we found our way back at the hotel, we took a quick nap and the phone rang. It was the admissions coordinator at the hospital to go over details.
“Do you have the heart scan results by any chance?”
“Let me look.”
Deafening silence. Heart slamming in chest.
“Looks like your EF came back between 59 and 65 percent. We should be able to move forward with the chemo as planned.”
Filled with the joy, memories, love, adventure and visions of the last six months, my heart is fuller and stronger than ever.
Tonight the chemo is dripping my friends. Wish me luck.
"I just don't know what to say." It's something that Jenny and I hear over and over again at times like these. Here's a secret: we don't either. Because there is absolutely no right or wrong thing to say at times like these.
So say what you have to say. Don't overthink it. And for the love of God, don't worry about saying the wrong thing.
When they heard the news, some friends, family and even strangers sent carefully crafted well wishes. Some long texts full of nothing but expletives. Some pictures from adventures we've had together, or even beautiful places they were when they heard the news. They were all great and meaningful in their own way.
Jenny and I don't subscribe to any one organized religion, but it means the world to us that so many people are praying for us, sending good vibes, or meditating. However you send the positive currents through the universe we feel it, and we appreciate it more than you know.
Some friends make cancer jokes, and frequently accuse me of "pulling the cancer card." I love those jokes. cancer is a part of my life and I joke about everything else, so why not that? I've actually come to like cancer jokes so much that I find myself making other people uncomfortable.
TANGENT: When on a guided fishing trip with one of Jenny's colleagues this summer and he gave the normal pre-flight spiel about "If you have any medical conditions, let me know." I found myself wanting to say "I have all of the medical conditions and will likely die out there. But don't worry, no one will blame you. Jenny will just kick some dirt over me and we'll call it good." It was only when I realized that would really freak out the real clients on the trip that I decided against saying it. Jenny and I got such a great laugh when I told her that was what I wanted to say.
So the takeaways:
Don't think everything you have to say needs to be deep and meaningful, and don't stress about the right words to use. There is absolutely no right or wrong thing to say.
Hear a really bad joke? Read a great article? Watch an awesome movie or Netflix series? Send it my way. It doesn't need to be more complicated than that.
Actually have something deep and meaningful to say but afraid it will be weird because it's hard for all of us to share emotions? Don't worry about it and don't hold back. I can promise you I'm in the same place.
On a great hike or bike ride and think of me or Jenny? send a picture.
Have a great spotify playlist that makes you happy or relaxed? send it along.
Have something you want to say but feel like "I'm not good enough friends with them to reach out?" F*ck it. I've been there so many times and from this side of things it's just silly.
And just because you don't hear back from me, doesn't mean it doesn't matter. I can't even begin to count how many messages I received on hard days that cheered me up, how many of you have reached out to me for over a year w/out me ever responding or thanking you, and I'm truly sorry for that. But know that they mean the world to me and of the thousands of comments, emails, facebook messages, texts, phone calls and cards we've received, not one of them has ever said a single "wrong thing."
And as the only note of precaution, like so many things I do the title of this post is sarcastic and should not be taken as universal advice. Everyone is different and I'm a weird dude with zero desire for privacy and a slightly twisted sense of humor. Even though it makes me belly laugh, I wouldn't necessarily recommend that it's good advice to accuse other cancer survivors of "pulling the cancer card."
Then again, if you feel so compelled, make sure to drop me a note and tell me how it goes.
Around 3:00 Sunday morning, a 4.0 magnitude earthquake, 43 miles south and 60 miles underground, shook the tiny cabin Sam and I rented in Talkeetna. Laying in the darkness, I was still awake, my mind churning over the intensity and major decisions we have in front of us next week. Sam and Birkie didn’t flinch.
In the predawn hours before my alarm, I've dreamt earthquakes for months. These tremors are mere mental disturbances that shake me awake and cause me to lie there wondering if it was real, or another figment of my imagination as Birkie and Sam sleep peacefully next to me.
Somehow, the fact that this rocky, disturbing week culminated in a real earthquake feels oddly affirming.
In the fluorescent lighting of Anchorage’s oncology clinic Thursday morning, I sat stunned as Sam’s doctor told us that Sam's cancer has relapsed and his prognosis “isn't good.” She said she didn't yet know if there are treatment options, and if there are, if any of them would be worth the risk given his condition. She said without any treatment, he has a few months to live. Obviously and immediately my eyes welled with big, watery tears. She said, without treatment, a team of nurses and doctors in Anchorage could manage his pain and supply blood transfusions to keep him going - temporarily. She said most patients die of leukemia comfortably - after a while, their bodies simply fail.
Taking it all in, Sam calmly asked her if, in her line of work, she’d observed how to die well. She said she’d never been asked that, but would think about it. Leaving, she promising to call an old colleague in Seattle and investigate his options, and she knew his Wisconsin doctor was doing the same. A social worker followed her in to talk to us about easing into Sam’s transition toward death. We were given a yellow folder with papers about hospice, and end of life support, and I don't know what else - I haven't opened it.
Stunned, Sam plowed through Thursday with characteristic, mystifying rationality.
Though I hate to admit it, I can only imagine easing into death would be a relief given the alternatives for him at this point. Always has been I suppose. Last time he went through treatment (and the time before that, I’m sure), none of us would even say the d-word. Now his whole diagnosis has framed like a train hurtling toward it. Any treatment attempts are essentially an opportunity to jump off the train, but who knows if his body can still survive the impact of the fall?
Thursday, he called his parents and close friends with the update. He consoled them and recounted our conversation with his doctor. He talked about do not resuscitate orders. I read about caring for a dying loved one online as he got a platelet transfusion. He held my hand and gave me hugs as I cried throughout the day. We went out to a fancy dinner because why not. It was the longest day.
By nightfall, my big, wet sloppy tears turned into the panicked tremors that shook my whole body and made it hard to breathe.
“So that's it? You're just going to die?”
Through the ugliest tears, I explained how this isn’t a broad lesson in “how to die well” to me. This is my best friend, my husband, my roommate, and my biggest, wildest love. I told him I loved him, needed him even, and I reminded him that we married because I couldn’t imagine my life without him. My shaking eventually eased back into big wet tears, which flooded onto my pillow until suddenly, it was light out. Unusually light out.
I woke Sam up knowing he wouldn’t want Birkie and I to experience any moment enjoying the brilliant first snow without him, even if just looking out the window at it. It was sticky - the kind that remains on all the branches of trees turning the world white and igniting and dazzling wherever the sun hits. Somehow the sight of it combined with the intensity of our late night conversation made him cry immediately - the first time since the news yesterday.
Between pauses for intermittent tears and hugs Friday morning, Sam made us breakfast - our usual routine. With full bellies as we lingered at the table moving around bits of syrup-soaked pancakes with our forks, and before we’d cleaned up the mess in the kitchen, a doctor from Seattle called. She asked Sam some questions about his medical history (already having been briefed by his Anchorage doctor over the phone) and explained that she thought he could likely be treated at Fred Hutchinson Cancer Research Center - one of the best in the world. She said, given his condition, she’d want him to come “sooner rather than later.” She explained that, like in Wisconsin, he’d come down for an office visit and a full work-up to determine if his body could handle the drugs they’d give him. She suggested next Tuesday or Thursday, as in 4 or 6 days from now. She told him to buy a one-way ticket and be prepared for a year in Seattle if his body could pass the tests. In the meantime, she’d have her people get his records from UW-Madison.
Sam asked her if she thought there is any chance for him to survive given his history and extremely aggressive form of leukemia. She said yes, there is a chance. Is it good? No. Does she have a crystal ball? No. Without missing a beat she continued. Are you 30 and do you have a lot of life to live, and do you have nothing to lose by trying everything possible to make you better? Absolutely.
She added that of patients with similar medical history as Sam who’d undergone the treatment she had in mind, three are still alive today. Three. Three more than zero.
With that, we had the rest of the day to shift focus from three months of life to three survivors. We altered our thinking from bringing our closest family and friends to make Sam’s next few months as comfortable and full of love and life as possible at home, to having to abandon Birkie and all of our things to fly to a new city and undergo a year of treatment that will have many weeks or months of darkness and pain. But that could lead to a cure.
As we skied the trails of Anchorage, made dinner, drove to Talkeetna and hiked in the woods and on the banks of the Susitna, we’ve been stewing over this for two days now.
Does Sam have to give treatment a shot if there are options? Yes, of course he does. There’s nothing and no one I want more than him, and that’s the only way to get to keep him. We know he has to go, and we desperately want to keep living this beautiful life together and will do whatever it takes to get us back here. To where we are right now.
Still, nearly 40 hours after our conversation with the smart Seattle doctor, I lay in bed wondering whether my panicked tears two nights ago would make him choose a route that ends in him dying in a foreign city while suffering and fighting, instead of peacefully at home with heartfelt goodbyes, beside our dog and many of you. The former is an unbearable alternative, though likely the route we’ll pick, hoping and praying that the end turns out differently than my fears.
Resolved, I tried to put it out of my mind and find some sleep. we’ll go to Seattle and fight - assuming the docs find a fight worth fighting. And then the earthquake happened, shaking me back awake and waking my brain back up to tell itself this whole story again and again.
Every year the first snowfall brings a euphoria as intense as new love. For it to come on a day of such intense emotion this year has had me alternating between tears of happiness and sadness for 48 hours.
To watch Birkie-dog play in the snow, to hike with Jenny next to the slushy Susitna on a bluebird day in the shadow of Denali, to cook and eat an amazing dinner in a warm cabin: Today was a perfect day. It was a day that I did my best to balance living in the moment with stopping to take snapshots that will carry me through the hard times that inevitably lie ahead.
Jenny has asked me to write more, so you can all blame her for the bad poetry and prose I’ll be contributing to this blog. In all sincerity, writing and thinking about some of my best memories was unbelievably therapeutic the first time I went through treatment nearly a decade ago and it’s something I hope to get back to more frequently this time around.
Jenny actually liked this poem, “except for that girl from high school. I will fight her.”
Humor helps a hell of a lot too.
Hope you’re all having a weekend filled with love, laughter, and adventure.
As i glimpse through the bedroom curtains,
my eyes widen with excitement and anticipation.
The world a new and beautiful place.
A million crystal reflections of sun
coating the branches of the trees.
The mailman’s boots crunch
through the undisturbed snow, and
I hear my grandfather’s steps
on the first day of hunting season.
Pink clouds over pure white mountains
match the blushed cheek of the high school crush I never
found the courage to tell, but felt the electricity of her
holding tight as we slid chaotically down the slippery
slope on cardboard, tractor tubes and lunch trays.
Greeted by the smell of Mum’s potatoes and pork chops
stewing in a can of cream of mushroom soup,
I strip damp jackets and snowpants with the warmth
of the entryway fogging my glasses.
As i glimpse through the bedroom curtains,
these fond memories flood back as vivid as
a heavy pine bow dumping its whiteness down
the neck of my jacket, and my heart bounds,
leaps and skitters with the happiness of the
neighbor’s puppy running wild and electric
circles through the freshly fallen snow.
Somewhere deep in my core, I knew this was coming. For the last couple of months, there has been a quiet whisper growing to full-scale chant: Carpe the Fuckin’ Diem. It’s your time. Make the most of it. And the result has been six of the most amazing months of my life. Six manic months of traveling 3600 miles back to our home in Alaska, getting in the mountains, catching my first King Salmon, flying out to the Tongass National Forest and casting to thousands of pink salmon swimming in crystal clear waters, building a fold up truck camper, eating squirrel, seeing the Artic Ocean, traveling over 20,000 miles on airplanes to visit friends, attend their weddings and go on adventures. And the list goes on-and-on-and-on.
And I am so unbelievably happy we didn’t hold back. In many ways, Jenny and I have experienced more amazing things and made more great memories in the last six months than many people make in a lifetime. I cannot begin to express how lucky and grateful we are to have these experiences and the amazing friends, family and colleagues that we’ve had the opportunity to make these memories with.
This week we learned the very bad news that the leukemia has come back. In a short period of time, my counts have tanked to dangerous levels and Jenny and I have spent the last couple of days looking into options. To be frank, there might not be many good options left, but I’m a stubborn son-of-a-bitch who loves life and if there is a fight worth fighting, I am ready to have it. The next week will be exploring what options might be available and making some hard decisions.
I want desperately to write more about our adventures, about the emotions good and bad that come with a relapse, about trying to face the idea of death without panic. About how much you all mean to Jenny and I.
But there will probably be time to do that from a hospital room in the near future and right now there is blood pulsing through my veins, the most magnificent snow I’ve ever seen on the ground and trees in Anchorage, a silly Beiner-dog excited to get some fresh air, and the most beautiful woman in the world ready to go for a walk and hold my hand. I am a lucky man.