I’ve been craving your presence lately, Sam. Wanting to tell you things. Nothing of significance, just things. Wanting your advice. Wanting to plan a trip or watch you 'Sam dance' and laugh. Cozy up on the couch, make dinner.
I still find pieces of you all over my life and I’m so scared that’ll someday stop. Your handwriting on things, your clothes or gear hanging in the closet. Your number and picture at the top of my ‘favorite contacts’ list on my phone. I talk to your family and friends about you. Oddly, I wonder how Birkie grieves for you.
On a whim, I went searching for you tonight, finally going through your wallet after all this time. I took out each item, savoring that they were yours and important enough that you carried them around with you every day.
Your five insurance cards. (Who has five?!) We were so lucky to have these things.
A hundred dollar bill, likely Christmas charity money from your Dad to have on hand to give to someone who couldn’t pay for their grocery bill or needing a cab.
Fat Ptarmigan gift card - probably go to have lunch and bullshit with Schryver or Snyder.
Michigan fishing licenses for trips to Lake Superior trying to finally catch a steelhead.
Wisconsin hunting license for the annual comedy trip (I mean, “deer hunting” trip) with Pete.
Wisconsin Union, Costco, REI memberships. Each of which you had comically striking affinities for.
Reporter business cards for pitching a good story.
A two dollar bill from Grandpa Dewey.
Passport card, bank account numbers, Social security card. I’m pretty sure none of which you’re supposed to keep in your wallet.
An expired Wisconsin drivers’ license that you kept just to show everyone the hilarious shadow mullet. (I tucked your current license in my wallet a few days after you died.)
A picture of us that you always loved more than I did.
A torn fortune from a cookie, “You will soon gain something you have always wanted.”
It's another collection of your things that I am now tasked with figuring out how much meaning to assign each of them. You’re not here in the contents of your wallet, but you’re closer.
I cried that I couldn’t remember how to put everything back the way you had it - so silly.
But I know future Jenny is going to want to do this over again. To feel close to you. To hold something as mundane as your wallet, put together the way you had it, and laugh at your shadow mullet.
I guess this is what grieving two and a half years out looks like, I thought as I tucked your wallet back in the drawer I found it.
Sam's good friend from high school (junior high?) in Rhinelander, Adam Schmidt, sent this to me shortly after Sam died, along with many others in our community who shared anecdotes and stories. I couldn't read them at the time, but have recently enjoyed going back through and reading what Sam's people sent. This was a particularly great read that I wanted to share. Thanks, Adam!
With our provisions in hand—PopTarts and pillows—we headed out of the house and across the driveway to the Weis-family Winnebago. Little did I know this was the first of what would become many Sam Weis adventures. Our mission that night: Make it all the through “The Exorcist” without getting scared.
It was the spring of seventh grade. I had just moved to Rhinelander at Christmas and was still getting settled in a new school and community. Sam invited me over to watch movies, made me feel welcome, and set in motion our lifelong friendship.
Over the years, our adventures escalated to include canoes, campfires, college, fishing poles, national parks, sea sickness (me), hypothermia (me again), and cigar-induced hangovers (that one was Sam).
In 2014, after Sam heroically beat Leukemia and reinvigorated his life and career up in Alaska, I paid him and Jenny a visit. Ten incredible days of camping, hiking, and biking led to the most memorable Sam adventure: the annual 200-mile Fireweed bike relay from Sutton to Valdez.
It was a beautiful, sun-filled July Saturday as we traded turns gliding up and down the Alaskan Highway. To the North, East and South, three mountain ranges were always in sight. I kept thinking to myself: This is the best way to experience Alaska.
As we hit the 140 mile mark, I was back on the bike making the initial approach to Thompson Pass—the 2,600 feet-high gap in the Chugach range that would lead down to Port Valdez.
The weather turned fast. All of the sudden it was raining and dark clouds blocked out the otherwise endless sunlight. Cold bursts of wind blustered down from the Pass. ... Maybe this isn’t the best way to experience Alaska...?
And just then Sam and Jenny's Subaru pulled past and stopped along the right shoulder. I pulled over behind them in time for Sam to jump out and shout: “Schmidty, let's switch. Take off your shoes!”
You see, we had been switching out the pedals between each segment, to match our different clips. But now Sam wanted to just get on and ride. He stepped into my soaking wet shoes, clipped in, and cranked forward.
Up through the cold rain, Sam forged ahead. Despite Arctic headwinds, Sam kept moving. He was solid on the handle bars and kept a steady pace. All the way up.
At the top of the Pass, Sam rested—briefly. And instead of taking the bike down the other side, a thrilling downhill he absolutely earned the right to enjoy, he got back in the car. He made sure Jenny took over and we drove behind as she plunged toward Keystone Canyon and the finish line.
Back below the tree line, the sun was again shining and the canyon was in full summer bloom. We were greeted by vibrant green vegetation hugging stone cliffs and waterfalls dropping from the glaciers above. We started humming the Jurassic Park theme song. Yes, this is the best way to experience Alaska. And Sam knew it all along.
I have been remembering this day a lot in the last few years, as Sam went in and out of treatment again. Just like that cold, wet climb to Thompson Pass, Sam stayed steady on the handle bars and fought cancer one crank at a time.
And just like that day at the Fireweed, Sam took on the most difficult aspects of this ordeal for the rest of us. Guiding us through his journey, helping us understand, granting us permission and such beautiful words to talk about and think about sickness and death and how to prioritize a life-well-lived.
Sam has made it to the summit again... but this time he's taking the bike back down the other side, racing into the sun-filled gorge and off to explore new trails. He'll be waiting for us at the finish line, covered in mud and with that broad, eager smile, ready to take us on the next adventure.
A short coda: I wrote this remembrance nearly two years ago, in preparation for Sam’s memorial in Madison, and only recently revisited it, thanks to Jenny. Re-reading it last week brought me flashes of pain, grief, and also deep joy. I’m really thankful to share this memory and the lessons it brings.
Last summer, Jenny, Pete, Dana and I rode the Fireweed, retracing the 2014 adventure above. It remains the best way to experience Alaska. Sam knew it all along. See you at the finish, bud.
I wrote this one a long time ago. (over 2 years!) It might still be useful, so I decided to share. - Jenny
A few people have asked me if I have any tips for how to support their friend/family member who is facing some time in the hospital. This question makes my heart hurt so much :(
I put a little list together that I hope will help. I hope most of you never need to use it!
If you have dealt with a long hospital stay, please feel free to add other ideas in the comments.
1. “Let me know how I can help.” Of course, we SO appreciated all the offers for help. But at times we needed it, it felt overwhelming to ask, or decide where to even start in asking. The best offers tended to be the most specific ones. Like, “I thought I could do [this thing] for you guys. Would that help?”
Suggestions: “I thought I could take your dog for a walk / bring you takeout / mow your yard / clean your kitchen / meet you for a walk / do a load of laundry / take your kids to the playground” (we don’t have kids, but you get the idea).
And then don’t forget the second part, “…would that be helpful?” Because maybe it’s not, and be prepared for them to say “no, but thanks.” Or, “that’s sweet, but actually what I really need is X.” And then there you are, being all helpful and stuff.
2. Your words: Sam touched on this really well in his blog post. But, as we all know, it is hard to tell people how we feel about them. However, don’t underestimate the healing power and encouragement that can come from a short note, text, facebook comment, email, etc. even if it feels so small and helpless. Just telling someone with sincerity that you are thinking about them really, truly means a lot – more than most gifts you can bring and are the things I still think back on now years later. - 1/4/19
3. Gifts. This is vastly different depending on the situation, I’m sure. But if I were to bring a gift to someone staring down a long hospital stay, it would probably be one of these things:
4. The visit. Here’s everything that comes to mind:
6. Be understanding. Sometimes, your hospital-bound person (despite best intentions) won’t have the energy to reply to your message, thank you for your gift, or (in really bad times) even open your gift. Just understand that this has nothing to do with you and what you did, and the effort you showed is noted and appreciated. Things can change quickly and you’ll have to roll with the punches as a supporter, just like they have to as a patient.
The best part? I learned all this from the incredible support YOU all gave. Thank you - we are grateful for you daily. Again, my hope is that you never need to use this list.
I drafted this post from Sam's hospital room in early March, 2017 - right before they decided Sam was ineligible for another transplant and his leukemia was terminal.
Almost two years later, my life is moving forward at what sometimes feels like is breakneck speed. Wonderfully and painfully, Sam remains an integral part of it, but it's changing and evolving. I'm excited about where it's pointing me - a new house (well, it's been a year now), a new partner, and the same job and community I love. It's all good, but I also find myself looking back to that time with Sam I think to make sure I'm applying what I learned. Or maybe because, though it's painful to look back on, it makes me feel close to him.
Anyway, I never published this, I think, because I hated it there but never felt that I should complain - how could I when I at least had my health and some semblance of freedom, when Sam had none. I always felt the need to make everything seem OK when it was just simply hard and kind of dark. I can see myself trying to tie a bow on this post toward the end, and am not surprised it sat in here as a draft - turning out too optimistic and "okay" for how I really felt.
When people approach me now because they're looking for advice to give a friend who's just been diagnosed with cancer, I feel like this stuff should be shared. That it needs to be said that it's OK to say "this sucks" whether you're the caregiver or the patient without adding the positive spin. I feel it needs to be said that, of course, all the hoping and optimism is important, but sometimes getting through each day is all you can muster and that is OK. It doesn't fit with "Carpe the effin diem" but it's honest, and we can always use more of that.
Anyway, for more on real hospital life - a life that still today gives me indescribable gratitude for my house, my dog, a private bathroom, a car, and of course, my healthy body - read on.
Everything on this unit is slightly yellow. The best reason for the yellowness that I can come up with is simply that the former "hospital beige" has been faded by years of the hustle and bustle of medical professionals, caregivers and visitors going back and forth all day after busy, rather intense day. Can just grieving and worrying around something turn it yellow?
Anyway, when Sam was admitted up here over three weeks ago, we thought it would be a couple-day stay to get his GVH flare under control. And then it was a few more days while they made a plan for the leukemia that was surging back. And then we added a six-day treatment regimen onto the plan.... which was delayed by a few days. And then Sam was going to be discharged. Except then he started showing symptoms of infection and then he threw his back out again and needed pain meds and so on, and so on. So now we've been living in the hospital again for another bonus month.
Sam is now on the bone marrow transplant unit at UW, which is not nearly as fancy as the chemo unit where he was treated last fall. The family room is simple - just a table with a few chairs, and a somewhat desolate bookshelf full of dated magazines that have been read at least 6,729 times each. There are two bathrooms for caregivers on this entire floor, and they always smell like, well, bathrooms. (There is something about never using a private bathroom in a day that really gets to me.)
I guess what I'm getting at is just the awareness of living in a very public place not meant for living. Of course my perspective is extremely skewed. Sam has been feeling much better lately, but when he's really sick there are entire stretches that he doesn't even remember. Though a 24-hour day may feel the same, I'm certain that time as a whole is experienced vastly different between the two of us.
Our room is just large enough for a cot, two small rolling end tables, Sam's bed, his IV pole, a sink and his bathroom. There are built-in shelves along the wall facing the bed where the nurses keep their medical equipment, a computer and where the TV hangs on the wall. We've added photos again, and tonight I'll hang some Tibetan prayer flags for color, and to promote peace, compassion, strength, and wisdom.
We have had a lot of guests this stay. Probably because I freaked you all out a few weeks ago and made all Sam's best friends worried that he was dying on us so they booked trips to see him. He's not, but it's still great to have visitors. (A bonus to depressing blog posts, perhaps?!) With each visitor who has come and gone, Sam's ability to be awake and interact grows better and more normal. He opened his computer to plug back into work last week and is taking the constant interruptions for bags of blood, nurse checks, specialist visits, rounds, and all the other things in stride.
So while we've been stuck here longer than we wanted or planned to be, things are going relatively well.
I found myself still tip-toeing around my house Saturday morning as I cleaned broken glass and straightened bookshelves over 24 hours after the 7.0 earthquake that rattled Anchorage Friday. I didn’t want to make any sound resembling what I heard when the earth moved yesterday.
I had just finished breakfast when the shaking started. As most in Anchorage probably did, my very initial reaction was a wholly apathetic, “Huh. Earthquake.” Then, obviously, it continued far past the allotted window were apathy still applies.
The rate of shaking intensified, as did the noise. While the earth and my house thundered and moved around me, I could hear bowls flying off shelves, pictures falling from the walls, and drawers rocking open. I wish I could say I kept calm and went under a table or doorframe as we're instructed, but simply, I panicked. I felt so vulnerable, and so alone. When the shaking stopped, I sat - breathless somehow - on the couch, petting my dog.
Shakily, I used both hands to stand, checking my balance, before walking around to assess the damage. Forgetting about aftershocks, I had just started to get my wits back about me when the first one hit - a 5.7. After that, my nerves were shot. I hate to admit it, but I was a basketcase the rest of the day. Apparently, Anchorage can expect thousands of aftershocks in the coming days and months. They can last years, I even read in one article. I wanted three points of contact throughout the day and evening - two feet on the ground, and a hand on a counter or wall. Better yet, my butt on the ground and legs outstretched. I took a conference call early in the afternoon, seated this way under a doorframe.
Though I rationally know the worst of it is over, with each jolt, the rumble would match the sound, however briefly, of the first quake and my adrenaline would jump back up. This repeated over and over. I slept at a friend’s house, and we were woken a few times in the night by 4+ magnitude aftershocks, but I’ve since calmed down.
Reflecting on the whole experience today, all I can think about is how tiny and insignificant we are. How, though we give a good illusion of controlling things, we’re utterly powerless to the world upon which we reside.
I’m far from an expert at yoga, but I’ve dabbled long enough to have learned a few things that weigh on me today. I’ve learned about the five elements of Ayurvedic teachings—earth, fire, air, water, space— which are present in everything in and around us. I’ve always most appreciated the earth element - the instructor brings this up in some of my favorite poses: mountain, tree, downward dog, child’s. This element and chakra are associated with security, safety, and stability. When I’m instructed to root my feet or hands into the earth, I feel that connection, that solid ground. There’s peace and safety in it.
I think part of the shock I’m processing as someone who’s never experienced a quake that large before (not to mention this massive and growing number of aftershocks), is grappling for the first time with a mistrust of the earth. The fact that the ground, where we root and find stability, can threaten us, try to buck us like a horse. It’s unsettling, and I’m not sure how to handle that.
Ultimately, my friends and I are safe. We all had minor damage at our homes, but we are OK and incredibly, there were no fatalities. Anchorage will recover from this. Maybe we’ll somehow be stronger from it - more connected as a community at least.
But I’ll never lose the perspective of the stunning power of the planet we’re borrowing - its noise and vigor. And I probably won’t be stomping around my house for a decent while, either.
(Text transcribed below image)
"To the family of Sam Weis,
Words cannot describe how thankful I am for the opportunity you, and all the people who have donated to the scholarship in Sam’s honor, have provided [other recipient] and I with. While I have not “seized the day” to the extent of [the other recipient], and I do not believe I would be nearly as achieving and out-going as Sam, I do believe that I will do everything in my ability to get what I need done in order to advance a career that I hold very important to helping others in their own time of need. I’ve seen people go through times of unjust cruelty, some people very close to me.
There’s been moments where I’ve had a first-had experience myself. Since then, I have sworn to dedicate my life to improving those of others. To protect those who cannot protect themselves and deliver justice where it is due. I cannot lie, I truly am terrified of the future and what it will bring. But seeing people, such as Sam and all of you: kind, helpful and good; it truly motivates me to go out there and take on the world and ‘carpe the effin’ diem,’ learning from that outlook on life. Everyday’s an opportunity; it just takes the will to take it know before it passes later. Again, I truly am speechless in thanking you for everything.
With many thanks and good wishes,"
- [Scholarship recipient signature]
Thank you once again to everyone who donated.
If you're unfamiliar with #32forSam, click here.
The week-long, Bristol Bay Fly Fishing and Guide Academy* is arguably the favorite part of my job. Over the years, the pursuit of success for the graduates and program has become very near and dear to my heart.
I’ve been involved with the Academy for five seasons now, and they’re each tied to important personal milestones, which were on my mind constantly while I was at the 2018 Academy over the past week.
Red Quill Lodge, Iliamna – 2014 (a.k.a. “The Best Year Ever”). Sam and I were finally finding our stride in Alaska and the state was beginning to feel like home. He was healthy, it was my first trip to Bristol Bay, and the Academy was one of the first major projects I’d worked on that told me how awesome my job is at Trout Unlimited.
Kulik Lodge, Katmai National Park – 2015. We were coming out of the Best Year Ever, and as I left Anchorage for the extra-remote lodge that season, life was good.
On the third day of the Academy, I stood in Kulik Lake in a very remote, roadless area of Katmai National Park. Rod and reel in hand, I had my waders on and fly rod rigged. I had been excited to fish there with the students for weeks. I was literally stepping into the boat, when I very suddenly had an inexplicable change of heart. I told a co-instructor that I changed my mind, and was going to stay at the lodge and get some work done that afternoon instead of fishing. He looked at me confused, but said that was fine.
I quickly went back to my cabin, changed out of my waders, and headed to the lodge. Moments later I opened my computer to see a few messages from Sam. He was heading to the ER for an emergency appendectomy. They were worried about his blood counts. Within half an hour, I made it onto a cargo plane – just barely catching the only one to be leaving the lodge for a number of days. Within two hours, I was sitting in Regional hospital with Sam in time for him to find out his leukemia had relapsed.
From that day at the Academy on, we spent a horrible next nine months in the hospital in Madison, WI. They’re well documented on this blog. They were long, scary and at times, we thought we’d never make it back to Alaska. I worked remotely from UW-Hospital all year that year, helping coordinate the Academy logistics and applications from afar, in addition to all my regular job responsibilities.
By May 2016, Sam was in remission and his doctor cleared us to head back to Alaska – just in time for the Guide Academy.
Mission Lodge, Aleknagik – 2016. Life was good again. We’d been back home in Alaska for only a week or two from Sam’s treatment before I left for the Academy. Sam was understandably still nervous about his health, but while I happily spent time with a great group of teenagers, Sam built his truck camper with Andy that week and was so energized about getting his life back, and eager to get out on summer adventures. We made the most of that summer, though he had health troubles throughout.
Three months later, he relapsed and we’d head down to Seattle for another shot at a cure, which of course never came. After Sam received his terminal diagnosis, he began telling me that he wanted me to find love again, and never to settle for someone who didn’t treat me well and make me happy. He told me to live fully despite the loss he knew he’d cause. I promised him I would.
Intricate Bay Lodge, Kokhanok – 2017. Sam died less than a month before the 2017 Academy. It was the first year that I didn’t have the capacity to help do much planning or coordinating at all. I didn’t have much capacity for anything other than caring for Sam in his final days, and then staying afloat after he died. For a program that’d become so close to my heart, I was barely aware that it had commenced, and almost forgot to ask how it had gone after it was over. As with many things that spring, the Academy got set aside to just survive the devastation of loss that consumed me.
Bear Trail Lodge, King Salmon – 2018. It has now been over a year since Sam died. My love for him is unchanged – as strong as the day I first knew we were in love, as when we moved to Alaska together, as when we fought his cancer together for so long.
Of course, time continues to move forward, and there I was last week – back at the Academy, thinking about Sam. I caught my first fish of the season and as I released it, other instructors standing around me, I dedicated it to him aloud. I cried from the boat later at the stunning beauty of the Naknek River, wishing Sam would have been there to enjoy it with me. I wished that Sam would have had the chance to see the Bristol Bay region as he so desperately wanted to. He was the one who taught me to fish, and I now recognized in myself the frenzy he used to get as I rushed to get my line in the water over and over with grayling and rainbows rising all around me.
In other moments throughout this week though, when not busy with the students, someone new occupied my mind.
This January, I met Connor and we started dating long-distance – a perfect pace for what I need right now. Because personal milestones are magnets to the Academy for some reason, Connor happens to work at a fishing lodge just down the road from the host of this years’ Academy. It was frustrating to be just downriver, but unable to see him for more than a few hours throughout the week as I was busy with the Academy and he was helping to get his lodge up and running for the season.
Thinking about Sam and Connor over the course of the week confirmed a lot of what I’d learned since January. Getting to know Connor has shown me that two very special people will never compete for space in my heart, but instead that it would expand to make room for them both. It has been confusing and difficult at times, but so beautiful, too. Connor is incredibly understanding of my grief and ongoing love for Sam, and choses to love me despite the complications. I feel lucky to have met him and, though it’s so strange, grateful to Sam for giving me the knowledge and confidence for someone as cool as Connor to even take interest in me. I know I wouldn’t have connected with him if it weren’t for all that Sam taught me.
I don’t know what will happen with Connor. Of course, the relationship is new and we’ve been long distance for most of it. It’s difficult to even admit being with someone new so publicly, but I think I owe my new young-widow friends the honesty and openness to share that it’s OK for widows to fall in love again and to move forward. I was lucky enough to get Sam’s blessing on this, but it’s hard nonetheless.
There’s no clarity in dating or love after death of a spouse or partner. There’s no end to “Sam’s era” and beginning of someone else’s. There’s no rulebook or timeline.
But there are two amazing men, who are similar and different in a hundred ways. And there will always be the Academy, where my brain will work overtime trying to connect and disconnect it all.
*Through the course of a week, a handful of volunteer instructors and certified guides teach about 15 local youth from the remote villages of Bristol Bay the skills they need to become fly fishing guides on their world-class home rivers. The program is helping break down barriers between the sport fishing industry, the commercial fishermen, and the indigenous people of the region who often see the lodges as outsiders capitalizing on their resource and not giving back to local communities. We’ve made impressive progress at breaking down some of these walls. We teach the students other important skills – how to complete a resume and succeed in an interview, about conservation, fisheries management, customer service, and more. And of course, throughout the week, we get to go fishing on incredible rivers that I’d never otherwise get the chance to explore.
A lot can happen in a single day. Or nothing can. Many days are forgettable. Many we just try to pass as quickly as possible to get to the next. But some are big, and they stick with you for years to come.
The amount of time I’ve spent thinking about the days that Sam was dying and a couple of the days leading up to it, are those all-consuming, memorable days. Those collections of a few dozen hours changed who I am as a person, and how I see the world. Not a day has gone by since they happened that I haven't thought back to them. Not many of our days are like that.
At first they were so painful to remember. They physically hurt. I’d instantly cry if something reminded me of those days. But now, I’ve thought about them so much, I can sit with them and just honor what they were and what they mean to me. Knowing how big they were, I took the time to write down what happened the days Sam was preparing to leave this earth, in detail. I never thought I’d be able to share them, or even read them again, but time heals, and now I’m ready.
I’ve decided to share this for a few reasons.
If you found this because your person is dying and you’re searching for answers: I don’t know how close or far this will be from what you will experience. But I want you to know that it’s possible for someone to die cloaked in love, and when you look back, you’ll feel good about that at least. I want you to know that though it is miserable, there will be beauty to be found in those hours, too. It will take time for you to find the beauty. It will take time for you to breathe right again, for your emptiness to start to fill. But if you look for that beauty and allow it to enter, eventually it’ll be there.
Everything that follows was written on May 12 and finished on June 4, 2017 except any annotations, which are in italics.
The day you died was utterly horrifying and also somehow one of the most intensely beautiful days that I have ever experienced. I’m scared to write it down and scared not to - that the details in my memory will slip away. I can’t let anything having to do with you slip away.
(Written on June 4, 2017 - so the details are already getting hazy)
2 days before: Sunday you weren’t feeling well but your days had been up and down and I assumed it was a down day. We’d talked about seeing Sam Snyder and having it be a day to spend together and see friends, so your parents weren’t planning to come down from Eagle River. You were really, really sleepy in the morning but we did our normal routine to get you dressed. Then I discovered that the gash on your leg had been bleeding all night, so I re-did the dressing on your leg. I can’t remember many details, except that I wound up making plans to go for a run with Emily and the dogs while Sam came over to hang out with you. When I got back, he said you basically slept the whole time instead of talking like you usually would. He and I were sad and worried about that - but again, I assumed it was a down day and you’d be back up soon. However, after I got home I noticed you had a bloody nose and were bleeding from your gums, in addition to being SO sleepy and out of it. I knew it had been 3 days since you’d had platelets (a transfusion of blood-clotting cells) and I didn’t want you to bleed and bleed all night, so I told your parents that I was going to take you to the ER and that they should meet us there. We all knew things were getting serious when we met there. You were so out of it. They waited with us while the nurses worked to get you platelets - of course it took forever. The ER doctor found additional signs of kidney failure and had some tough conversations with you about your life expectations, and you were mostly too out of it to participate. It was terrifying and sad. That’s most of what I remember now.
Day of: On Tuesday morning I woke up at a little after 5 a.m. in our bed. Alaska May sunshine poured into our windows. Ezra sent me the beautiful and heart wrenching video to the song "Rise Up" by Andra Day, which I laid in bed watching and the tune fittingly remained in my head the rest of the day.
You were sleeping in the hospital bed next to me in our room. You’d been crying out (it sounded like yelping or moaning) every now and then in your sleep over the past few days and I noticed it had picked up in rate. It was concerning, but I assumed you were sleeping soundly and it’d calm down once you woke. In attempts to calm you down, I got out of bed, grabbed a your Harrison book, and Good Poems, and started reading to you aloud. Through tears, I also read you from my, “One Line a Day” diary book about our last 5 years together, and also a couple emails and letters that had come in from people wanting you to know how much they love you.
Your moaning intensified over the next couple of hours and I started to worry more than my standard-issue worry level (which, since the weekend, was already at like an 8). I called the on-call hospice nurse to come over and check you out. As you know, I cherish our alone time so much that I tried to soak up the final moments of the two of us in our room before what I knew would be an intense day ahead with lots of people around, but had no idea they would be our last minutes alone in our house together.
Shaina came over to drop off breakfast for me. I met her in the front yard as she parked so I could talk to her before she came in and heard your moaning. It was a beautiful, sunny spring day in Anchorage. Everything was starting to become green. She was surprised when I asked if she wanted to come in and say goodbye to you, and we began crying. While she was there in our bedroom sitting with you, the nurse came to check on you and called the doctor because you seemed to be in pain. Though you were making terrible noises, the nurse said since your face wasn’t grimacing she thought you were probably OK or experiencing delirium, which is normal. Still, she increased your continuous pain med dose just in case. After she left, I started to worry about you more. You just didn’t sound good and the nurse didn’t have a satisfactory fix. I texted your parents, “we were feeling lonely” and asked them to come down from Eagle River even though it was early.
I knew it’d be hard for them to see you like you were as they arrived, having gotten significantly worse since they’d left last night. I was nervous. When they arrived, I gave them a few minutes to be alone with you and sat on our couch in the living room to replay the day before in my head, wondering how we got here.
Day before: Monday morning you were in rough shape - so tired and beat-down after spending most of the night before in the ER, but still semi-coherent. We took a wheelchair-accessible cab to the clinic as usual, and I cried at how poorly you were doing as I wheeled you in. The nurse could tell you were in rough shape (both you and I were, actually. I’m sure she saw I’d been crying) so she called Dr. Anderson to come down to see you while you got platelets. When Dr. Anderson arrived, she again set to work trying to convince you that hospice would be a good option for you, noticing how much pain we were clearly causing you by transferring you from your recliner to the wheelchair, to cab, to clinic, etc. She explained the benefits of hospice again. You were so sleepy and out of it - this conversation happened very slowly and through asking you multiple times since you kept falling asleep. You asked her if she thought it was possible you’d get better. She said that it was unlikely. You asked her if you could be removed from hospice if your kidneys improved and she said yes, and explained the symptoms to look for if that were to happen. You still resisted. She asked you why you were so resistant to hospice, and you said you, “didn’t want to feel like you were giving up.” We told you that was crazy - that you’d done everything and more and surpassed everyone’s expectations. You were perfect at dealing with a vicious, unrelenting, and unfair disease.
You clearly wanted not to be in pain any longer, and Dr. Anderson said hospice would be the best to help with that, though it could come at a cost of you being more loopy and tired. She and I reiterated this trade-off to you a number of times as you were so sleepy and faded in and out of the conversation. We wanted to make sure you understood that sadly, your comfort would come at the cost of your mental presence. It seemed to her and I after asking you a few times that you understood, and no longer wanted to be in pain. We agreed to set up an informational consult with hospice and likely move forward with it, understanding that if you did improve, you could always jump back into treatment. This made both you and I feel better.
You were largely unresponsive as we were on our way out of the clinic and as we waited for the cab. I cried mostly. Though I was scared and slightly dubious of your wishes at the time since you were so sleepy during our conversation, hospice thankfully called while we were in the cab home and was quick to set up an appointment - saying they wanted to come the same day.
When we got back to the house Monday afternoon your parents came and we were very worried. You were so much more out of it than any of the days prior - barely talking, clearly in pain, and simply looking sad and tired. The nurses came and assessed you and increased your pain meds dose. You struggled to respond to their simple questions. You ate only one bite of mashed potatoes that day. I left to go workout, and your parents stayed with you. We obviously had no idea how little time you had left. After I returned, you were completely out for the evening.
Late that night, your parents left for Eagle River and I was nervous but happy to get to spend the night alone with you, like “normal.” (Very not normal.) Before bed, I realized that your external catheter had come completely off and you were sitting in a puddle of urine. I started our normal routine of helping you stand to remove your pants and Depends, and put on a new catheter before bed. I knew you seemed way too weak to walk with your walker so I put your wheelchair next to your recliner and thought I’d help you stand, shift you, and then you’d sit in the wheelchair and I could wheel you into the hospital bed in our room since the recliner chair was wet. Quickly, it was clear that you wouldn’t be able to stand, even with my help basically lifting you. Knowing you couldn’t sleep with soaking pants on a wet chair, and panicked about how fast you were declining, I called the on-call nurse, Nina (pronounced Nye-na) to come over.
As we waited for her to arrive, something amazing happened. I’d been talking to you all day (many of us had), but as I was explaining to you that I’d called the nurse to help me, you came-to and were present. Like you were finally mentally completely there. Remember that? For the first time all day you looked me in the eyes. You asked me if your parents came yet to help get you to clinic. Kneeling before you in your chair holding your hands, I explained to you that we’d already gone to the clinic today, and they’d left for the night. I asked you if you remembered the day. You said no. Panicked and now crying, I told you we’d put you on hospice today and that you’d chosen the comfort of pain meds over being “with it,” and none of us blamed you. I told you that if you got better, you could always stop hospice because I thought you’d be mad if you didn’t remember your involvement in making that decision since I know you were so agonized about it. Then finally, I told you I loved you so much and cried and hugged you. You said I love you back for the last time then, I think, as you faded back out.
Nina arrived and we moved you from the recliner chair in the livingroom to the bed in our room. It was not an easy task. You were semi ‘with it’ in that you’d respond to the pain, but little else. One of the final things you said aloud in reaction to any sort of stimulus was, “owie-owie-owie” (really fast and mumbly) as we moved you from the recliner to the wheelchair, and then the chair to the bed and then shifted you into place. It was so awful, but quick. We hated making you uncomfortable, but agreed the short term pain would be worth the long term comfort of the bed. In the end, I’m glad we moved you when we did. You calmed down right away once you were settled in bed. I have a heartbreaking voice memo saved on my phone of myself telling you I love you and you trying to respond. Maybe it was from then once you were in bed but exhausted from moving, or maybe it was from earlier in the recliner. I can’t remember.
Either way, Nina pulled me aside after you were settled in bed and gave me a hug and said you wouldn’t have long, and that I had very hard days ahead. Her words were gentle but the truth she spoke was harsh and terrifying. I’m so glad she came over and we started hospice when we did. And I’m so glad we spent our last night at home together in our room - just the two of us and Birkie. I tossed and turned for hours, but eventually we both slept - with some waking up when my alarm went off throughout the night like usual as you became uncomfortable so I could push your IV fentanyl pain pump button to help ease your pain.
Day of: As I sat there on the couch Tuesday morning replying the day before while your parents were in our room with you, it started making more sense why we were here now. I could hear your moaning intensify in the other room and went in to be with you with them and you, thinking it was “new normal.” Friends had texted wanting to see you. I thought it was a bad time for them to see you due to the moaning, but if things were already this intense, I knew it’d only get worse. So, I reluctantly called them and told them to come soon.
Over the next few hours, heartbreakingly your condition continued to intensify. You seemed so agitated and uncomfortable. In between friend visits (Laura, Sam, and Brandon), your Mom, Dad and I took turns sitting with you together and alone. Listening to music, reading, telling stories, holding your hands, trying to calm you down, and, most importantly, telling you we loved you over and over and over again. Finally your breathing got so bad - you were gurgling and it sounded very strained - we called the nurse over to the house again to give you oxygen since it sounded like you couldn’t breathe, and more pain drugs. I wish she would have arrived faster. As she finally administered them in the early afternoon (around 1 or so), your discomfort was at its peak - I thought you might go right then and there. That was right when Ryan came over. He said goodbye to you and took Birkie for a walk. He brought her back in right when we were all in our room - your parents, the nurse Becky and I - and you were practically shouting in pain (were you? I hope it wasn’t pain, but it sounded like it) and your breathing was so labored and gurgly. I was standing over you, crying, and telling you it was ok to let go and we were all here and we understood. I told you that you didn’t need to fight any more. I told you that we weren’t mad and didn’t blame you. I told you that you did everything and more you could have. And of course, I continued to tell you that I love you a hundred more times, as did your Mom and Dad. You seemed to relax slightly right away after I said so. And then, as the meds set in, thankfully you relaxed a lot.
Your breathing eventually became deep and quieter, but still audible. Your facial expression relaxed. Your head was resting on your Mom’s woobie on the right side of the hospital bed. The sun shined in the windows - it was such peaceful weather. Finally, after the long, dramatic morning, each breath you took was like a heaving, audible sigh - but a very comfortable, comforting one. I soaked in that sighing sound you made - it was such a relief after the commotion of the morning. The smell of your breath mixed with the orange-smelling meds they gave you lingered in my nose for 24 hours after from having my face so close to yours all day. It wasn’t pleasant, but I’m so sad that smell is gone now.
For the rest of the afternoon we held your hand as you settled into new, “new normal” - your heaving sighs, much calmer and more comfortable. I cried more and touched your arms and face constantly. Birkie approached the bed over and over to look at you, rest her head by your right arm, lick your fingers and then come to my side of the bed (near your head) and put her head on my lap. A social worker came and your mom and I ignored her, not wanting to step away from you for a moment. We were watching your breaths like a campfire and could barely look away. Since we’d given you permission to go, I knew you were probably thinking about it. I didn’t want to eat or drink anything to avoid having to go to the bathroom and miss a single extra moment with you. I was annoyed when later I had to go talk to the nurse to learn about the meds she’d prepared for you for overnight (which of course we didn’t end up needing).
A little after 5, some friends came to drop off dinner. I knew it was a really intense time for them to see you at this point and was hesitant for them to come into the room, but since I thought it was “new normal,” I had them come sit and talk to you for a few minutes. They told you about their adventures and how they thought of you during each one. They’d brought food, but I didn’t want to leave you to go eat it and had chugged a glass of water when I learned about the meds with the nurse.
I continued sitting with you. Your mom was there too. I sang along quietly to a few songs from our fireside playlist to you. You’d settled into a breathing rhythm and I still had a pounding dehydration headache, so I stepped away to get a bowl of the food they'd left and chug more water. I knew it’s what you’d want me to do - take care of myself. As I sat on the couch to eat, your mom, who was in the room with you as I’m sure you know, called for me. I ran into the room. She said you’d stopped breathing. I sat down in the chair next to your head just as I saw you take one breath, then a long pause. Then one more breath, then nothing. I began crying so hard. I had my hand over your heart but couldn’t tell if it’d stopped beating because I was shaking. It had. Your Dad checked your pulse and said that was it. I looked at him and said “are you sure?” through tears. He checked again, and he was sure. I cried harder than I have ever. Your skin felt the same but your head already fell so limp and dense, and you were so, so quiet. I couldn’t stop crying and yet the quiet was comforting in that it was finally an apparent absence of pain. Well, absent for you, but so overwhelmingly present for me and I’m sure your Mom and Dad but I couldn’t look at them yet.
I got a text right then from Eric: “On my way over to see my main man Sam.” I had your Dad call him because I couldn’t.
Your Dad called the nurse back over to come pronounce you, as she’d instructed us to do. Your Mom and I obsessively held your hands and cried. He made other calls to your sisters, my Mom and others, I imagine. At one point your Mom left me there alone with you sit on the bed with you and lay my head on your shoulders like we used to. I sobbed. Your skin stayed the same texture - it was such a comfort to me, and I couldn’t stop touching your arms and face even as you grew colder. Your Mom returned, as did your Dad, to sit together with you. We talked about the day and more importantly about you. I took your wedding ring off and put it on my finger. As I did, your Dad told me it was your “most prized possession.” I said, “it’s mine now.” It really is.
I texted Shaina to ask if I could sleep at their house tonight. She called me.
“What’s going on?” she asked.
“Sam died,” I said. She said they’d come get me.
We stayed with you for an hour, stepping out only as Nina prepared your body for the funeral home to come get you. I called my Dad who didn’t answer, and then I called and talked to Scott. Just after I did while your Dad called the funeral home, I learned your “official” time of death is 18:54 - though she came after you died, obviously. It feels good that those few minutes before 18:54 are just ours.
We came back in the room after she left while waiting for the funeral home people to come. Your Mom, Dad and I cried and talked more about your beautiful life and our beautiful love. Nina had straightened out your body and fixed the blankets. She laid you to look very peaceful and folded your hands over the blankets nicely. I held onto your hands and touched your head and kissed your head and hands so many times. Your Mom and I talked about your long eyelashes and handsome eyes. I noticed the teeniest of wrinkles on your face that were caused mostly by laughing and standing on the river on sunny days, and probably a little bit by crying. I traced the freckles on your arm with my fingertips like I did when we were laying in bed and I'd try to get you to tell me more stories because I couldn’t sleep. I tried to soak up every ounce of heat you had left and not miss any of it.
I hated the funeral home people when they came. They were nice, but I hated them. I sat on the edge of our bed looking at the hospital bed where you laid in the room as they entered. They transferred you onto a long, black board from the hospital bed, and carefully wrapped you up in a white sheet. They carried you to the front entrance of our apartment on the board and placed it on a cart. They placed your body in a black bag, zipped it, and then covered the bag in a colorful quilt. I remember the moment they covered your face with a white sheet knowing it was the last time I’d get to look at your face. It was so terrible. My body shook.
We all went outside to the front step - your Mom, Dad, Birkie, and I - as they wheeled you down the ramps Andy built away from the house to the street. They loaded you into a black minivan, and drove you down Kinnikinnik and away from us forever. Your Mom blew you a kiss as she always does when we pulled out of the driveway for an adventure. The three of us stood there looking at the street, stunned, for a few moments silently. I’ll never forget those few moments standing there with Debi and Jim and feeling this awful, yet beautiful bond over our love for you, each other, and in awe about what we’d just experienced together. Then we hugged each other out on the step and went back inside.
Ryan, Shaina, Emily and Zac came to get me just a couple minutes after the funeral home people drove away. I saw them out our bedroom window all getting out of the car, uncharacteristically quiet and sighing about how intense of a place they were about to walk into. Everyone hugged everyone when they came in. They laughed at me when I asked if Birkie could come, because of course she could. I was so broken and they were so good at taking care of me as I cried throughout the night a little, and mostly sat numb in the corner of Ryan and Shaina’s couch. Your parents left for Eagle River. I couldn’t sleep. And I couldn’t stop thinking about you laying in that bed over the day - first so agitated and then so peacefully and then so quietly.
Wednesday: Zac made breakfast and some friends came over for hugs (Sam and Liz, and Laura). Shaina drove me to the funeral home so your parents and I could make plans. Signing the consent for your cremation was one of the hardest things I’ve done, Sammy. Other than that, the meeting went as well as it could have. After that, your parents and I went back to our house where everyone was helping clean out all your sad hospital stuff so the next time I get up the courage to enter, it’s more like our old happy life and less like our sad life of recent times. I think that’s what you’d have wanted for me. There were so many people at our house and they were all helping and crying. I gave hugs and thanked them. I hadn’t realized when I asked them to help earlier, how hard that would be on them to have to do that - how sad all that stuff must have been. Then I started panicking about being there too soon, so I left with your parents right away. We ate a nice lunch together. It was another beautiful, sunny day in Anchorage. Then we had good afternoon heading up to Glen Alps and telling stories and enjoying the sunny day as much as we could, exactly as you’d have done. It was again, awful and beautiful. In the car I couldn’t help but think, “un-fucking-believable” again and again. Even though it is believable after all the health drama you’d had, but unbelievable that you are actually physically gone. The drama of the day before was still so fresh - I missed you already, and had PTSD about the events associated with losing you. (Though I hate that term, because you’re only partially “lost”)
That night while unable to sleep around 4 a.m., I replayed a conversation with the funeral home people earlier in the day as they said they used to live right by us. I realized they lived in that brown house on the corner just past the dead end, kiddie corner from Birkie’s “poop lawn.” I realized that that black van they took you away in was one we’d walked past together dozens of times on our walks. I realized that you’d seen that black van. I wondered if that was creepy, or just a coincidence, or comforting, and settled on none of those things, but just interesting.
I know you’d want us not to be sad for too long and to celebrate your amazing life (though, you’d state it more humbly) and remember good times. I’m going to and I will, and want to, but right now I can’t stop replaying this beautiful and terrible few days in my head. It was so much beauty, and so painful. I had white salt crystals encrusted in my eyelashes from the tears - did you know that was possible? I didn’t. Today was Friday. I didn’t cry as much today but I didn’t think of you any less, which is constantly. My body and soul feel so drained and empty, but we’re all keeping going. We are working on your celebration of life so I’m staying busy with those plans. They just called me to say that your ashes are complete and ready to be picked up. Thinking of you as ashes sends me into a tizzy, so I decided to deal with that on Monday. I know you are elsewhere and I talked about looking forward to finding you in the outdoor places you love, and I am going to search constantly for you there. But I was fond of your body and your warmth and your physical self near me and with me and talking to me so much that your ashes are so painful to think about.
Maybe I cried less today because it’s easy enough to convince myself that you might just be at home waiting for me. It’s only been a few days - it could be feasible that we wouldn’t have talked for 72 hours (though I can’t think of a time we did). Maybe I cried less because I was doing logistics stuff and being distracted by baby Cohen, which is all OK but not OK at the same time. I don’t know why I didn’t cry as much today but I know you’d tell me not to over analyze that. Still, I miss you so much it literally hurts my insides and I regret saying that in the past, because it was never true until now.
The past week was so hectic with family in town but the highlight was that our families and our community took care of me and each other. They wrapped me in a support blanket so greatly that saying ‘a support blanket’ is barely even a metaphor. I felt love from 25 different directions at any given moment. I hope other members of your family felt the same. We drank beers and told stories all week. When in a small crowd and the stories about you ended and conversation shifted, I’d be standing there physically but mentally alone still thinking of you, again. I laughed and cried along with your best friends about missing you and loving you. We talked about fishing, and your big ears, and work, adventures we’ve done together, and how you’re really quite slow, and what we’ve learned from you and so many other things we loved doing with you.
By Saturday, I got so homesick that I re-entered our home for the first time with Birkie not because I “felt ready” but because I just knew had to. It was hard but the familiarity was good and I'm glad I went without any other humans. On Sunday, my mom, sister, Cohen, Paula, Keith, your Dad and I celebrated mothers’ day with your Mom and we told her how loved she is and how much you loved her even though I know she knows that. I told her that so many of your most favorite stories had her in them. I told your family that they couldn’t get rid of me. It was such a hard week but I’m happy to tell you that we did what you’d have wanted us to do and we made the very best of it and will continue to.
I could keep writing to you forever. I likely will. Now it’s time for bed. I wonder where you are and if you have to sleep there. If not, come visit any of us while we do, ok?
Love you forever.
I often find in my life that two things simultaneously can be true. Circumstances can be both bittersweet and celebratory. We can have huge loss and experience overwhelming gratitude at the same time. Today is a bittersweet day. Today is both a day of heaviness and celebration. Today is Jenny’s birthday. Birthdays are the perfect time to celebrate all that is wonderful about special people in our lives. Jenny is a ray of sunshine and light. She has strength, optimism, and radiant energy. Every interaction with her feels special, light-hearted, and meaningful.
Today is also the day that will be forever be marred by receiving the devestating news from docs in Seattle that there was nothing else they could do. To try for a bone marrow transplant in Sam’s condition would, as they put it, “shorten his already short life.” Since leukemia would take Sam swiftly on its own, this essentially meant treatment would kill him. It was important to Sam that he didn’t die of painful treatment in a hospital. He wanted to be back in Alaska and let leukemia take him quietly in the home he loved. March 16 started his road home, to all his homes, to say his final goodbyes.
Sam and Jenny packed up their temporary home in Seattle and headed first to Wisconsin. I said goodbye to him for the last time standing in my sister’s kitchen. He had just gotten back from a long clinic visit and he was tired. We hugged and ended our conversation him saying I should really get up to Alaska sometime soon. I said I liked that idea and gave him a squeeze knowing full well this was probably goodbye. “See you soon,” were my final words in person to him, “love you.”
I’ve been in a funny headspace as this spring rolls around thinking how we had no way of knowing last year at this time that Sam only had two more months to live. Hindsight always gives us all the answers we couldn’t have possibly known then. As the year anniversary of his death creeps up on us, I find myself seeing him everywhere. His spirit visits me in cardinals, deer looking at me on the side of a snowy backroad, and in blue herons flying overhead. I play a playlist of songs we swapped back and forth when I took him to one of his clinic visits in Madison. Ghosts of healthy Sam have visited me in dreams and I’m always so happy to see him again.
March 16 is both celebration for all the things Jenny means to me and my family, and all the ways I miss Sam. It’s both a time of looking forward with optimism and hope while one eye looks sadly back. Mostly today I want for Jenny to know all she is to me and my family, and all I want for her now and in the future. I hope for Jenny to live a full and wonderful life. I hope she, if she’s ready and it feels right, finds someone that gives flight to her dreams and a soft place to land after adventures. I hope she skis a thousand skis and sees even more sunsets. I hope she always knows how much we love her and value her as part of our family, always.
Happy birthday Jenny! Today is your day. It’s about celebrating you and all you are in the world. I can’t wait to see what’s waiting for you on the wings of your life. I’m so happy to be a part of it. I love you!