Living with chronically recurrent, rare, and incurable cancer has its challenges. Among them: explaining how this form of disease differs from what most people associate with cancer. The narrative that’s familiar (because it’s also the most common) goes a little something like this:

• A diagnosis is made

• Intervention occurs (be it surgery, chemo, radiation,…

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Summer is over. I didn’t get to fly much this season but I had already made that bargain with myself at the outset of the remodel. The scale of this endeavor has been vast, beyond any past project, and I try every day to take stock of how much I’ve learned, the design choices made early that guided and simplified the work, the errors which required correcting. The sum total is a real thing that feels more like an elaborate art installation than a room. Every layer, every angle, every material is something I’ve touched or altered, informed by a vision, a picture of what it will become when little details are all that remain.

I never expected this to be easy but maybe I did silently hope that cancer and surgery would be a next year problem. I’ve been delaying, prioritizing work over wellness, knowing I’d suffer a bit more now, but will still willing to make that choice. The progress day over day, week over week, seeing the space slowly transform, moving closer to a cohesive and orderly future state, towards the vision...it’s addictive. Last year, I wrote and published a book. This year, my book-sized challenge was a 200 square foot canvas full of surprises and constraints, a work that has pushed my body to the limit, that has been collaborative at times, but mostly a solo effort.

The last recurrence and subsequent surgery was in February of this year, which would be alarming if it was unexpected. A full quarter of my life has been affected by this aggressive and uncommon disease that’s now reappearing more and more frequently. At this stage, I am fully comfortable with incurable and I wonder when (not if but when) we will arrive at inoperable.

On occasion, I think about dying and dying well. Recently, during a bout of awful nerve pain that had me laid up for a while (likely from the tumor pushing on the sensory spaces behind my face), I imagined deep breaths becoming shallower, sensation dulling, and everything slowing down. Then, simply, the end. Usually there isn’t much time to lie down and consider the final stages of life because there is too much to do; this pain commanded my attention and stillness for a while.

Idleness, rest, and purposefully doing nothing is tough for me. Some of this is an unshakeable conviction that my time is short, that I need to keep going while I can. The other bit is simply how I’m oriented—I like actively doing and learning, being in constant motion—building things and solving problems is a lot like play for me. I associate it with being alive and healthy; being sedentary is the inverse.

The pain was a reminder that there are limits and maybe the kitchen can wait, maybe I should take time off work that doesn’t involve more work of a different variety. Or perhaps I should double down since we are so close. Only two major bodies of work remain: the countertop fabrication and the final electrical panel connections. Everything else is minor: finishing details, trim and touch ups, little adjustments. Maybe I will rest when the kitchen is done.

When I was writing the book, I interview several people to check facts and hear perspectives on elements of the story directly from the person I was writing about. Of course Dr. Barber was one of the people I interviewed.

When she asked if she could interview me for an Oto department talk, I was an enthusiastic yes. What follows are the questions she sent me prior to the interview, and responses that I wrote in preparation for the interview. In other words, this is not a transcript, but does roughly follow the through-line of our discussion.

Big thanks to Dr. Barber, Dr. Moore, and the entire Oto team at UW for having me.

Tell us about yourself before you were diagnosed with cancer. Do you feel like the same person now? Has your cancer diagnosis changed your identity or the way you feel about yourself?

JAH: Identity—starting with the easy questions ;) There have been cycles and phases, like a lot of things in life, but really sitting with how I changed after the flap surgeries helped me reconsider the entire concept of identity.

There are layers and facets to this question, given the long timeline of my history with this disease. Before diagnosis feels like a lifetime ago. That person feels far removed from who I am today and this was one of the challenges with writing the book—trying to recreate those conditions, revisiting memories, knowing I was doing that a decade removed from the experiences.

But the TLDR on me before diagnosis is this: I wasn’t sure what I wanted out of life, I was still rebuilding confidence in myself after a really rough period in early adulthood (at the tail end of college and the years that followed), and I was in a really fraught relationship. Then this bomb goes off and in an almost cinematic sort of way I knew I was in store for a lot of change, or maybe it was the end.

Shameless plug: if you want a long dissection of this period of my life, I encourage you to read the book because I tell the story better in that format than on stage. I think.

But back to the central question of identity—I’ve come to understand this as something more fluid and squishy than our language and our culture tend to accommodate. I don’t think there is a fixed me behind the curtain, something that’s set apart from experience. The Buddhist ideas around non-duality and non self are deeply interesting to me and I found them really helpful when I was trying to understand the change that I’d gone through.

At your first diagnosis, describe the feeling that you had when you were told your diagnosis and how the information was conveyed to you.

• Did you feel supported?

• Was there anything that could have been said to reassure or support you on the part of the clinical team?

JAH: It was a phone call from a local ENT in Olympia, that’s how I learned of the biopsy result, back in early 2015. I was surprised and then insatiably curious about what this thing was. I’d never met anyone who had sinonasal cancer, certainly wasn’t on my radar. And apart from my dad having a small melanoma removed in his 30s, no one in my immediate or extended family had any history of cancer.

I was straight away referred to Dr. Vishnu, Dr. Pham, and Dr. Bayles in Seattle. Of the three, Dr. Vishnu was the provider I really connected with—he was warm and explained the unknowns in a frank sort of way, which I appreciated. I’d basically arrived at a similar conclusion, which was that this malignancy was so rare, especially for someone my age, that my treatment plan would be bespoke, that there wasn’t much data on how this typically went. Oddly enough, knowing I was in uncharted territory was not unsettling for me. Perhaps I’m an odd duck in this way, I don’t know.

In terms of reassurance and support—the facts were helpful. Plain and clear statements about what was known, what was unknown, the risks, the upshot. I had my own ideas about what cancer might mean for my life long term, but at that early stage having a clear understanding of the treatment plan was really important for me.

I think the bit that I either didn’t pay attention to or couldn’t conceptualize, was how brutal the treatment regimen would be.

Tell us about your initial CRT1 and the course of your treatment.

• How did the side effects change how you viewed your body if at all?

JAH: I was pretty fired up to be a champion cancer patient, which in my mind would’ve been easy to pull off with all the old geezers around me, many of whom looked like their years were already pretty limited.

My experience with chemo and radiation, all the pain meds, magic mouthwashes, PEG tube feeding… Oof. I had no idea I was capable of enduring so much pain and suffering. It was something like a dark psychedelic experience and I felt my body, my sense of self, my ability to think and reason and communicate wither away. I guess it was a little bit like dying. So if I start to feel like that again, in a slow decline sort of way, maybe I’ll know the process has begun and I am beginning to die. Cheery thought. Lol. I am not afraid of dying, can you tell?

But I healed and fully recovered. I felt more capable on the other side of that experience, maybe more than I had in my entire life. I was cautiously optimistic, figured the cancer thing was anomalous and now I could move on with my life. My ability to tolerate pain and discomfort were permanently altered too, and I appreciated in a visceral way just how resilient my body and mind really were

Tell us about when you started to develop ORN2 of the skull base and we first met. When I told you what we would have to do, did you feel like I prepared you for what was to come?

• How did not being able to see my face during COVID change the way we interacted vs now?

JAH: I wonder if there is actually any way to really prepare. Information certainly helpful. And kindness. But I think a lot of the effort in preparing happened outside of that exam room. Maybe I have a slightly different take on this than other patients, or most patients. There’s only so much the provider can do to help someone prepare for something they’ve never done before that will change their lives forever. Clarity and kindness.

Having been through the depths of chemo and head/neck radiation helped to some degree. I had a baseline for the most difficult physical experience in my life, and hell I got through that. And past experiences with psychedelic drugs probably also helped—the prospect of being in altered states of consciousness for extended periods of time wasn’t at all alarming to me. And yes, I am a fantastic anesthesia patient.

So I think part of how I prepared, how you helped, was having a clear idea of what was likely to happen so I could visualize, mull it over in my mind. I mean, I watched a radial forearm flap harvest surgery because I was curious.

It was very strange not seeing your face, but I know Linds and I sensed kindness and care in how you spoke to us, how you stood in the room, the way you looked at us. I think most people learned something new about just how much meaning our eyes can convey, which is pretty remarkable.

The most noticeable difference between then and now, something I definitely noticed, was the weight you seemed to be carrying, which I imagine was true for a lot of your colleagues during the time.

Tell us about how it was for you to have surgery during COVID – both times.

• How did the lack of family/social support in the hospital (no visitors) impact how you recovered, your experience, how you felt about surgery?

JAH: It was challenging, on par with the experience of recovering from treatment that first time on my own. But with a key difference—I knew there was an end date, so I tried to place my focus there. Mostly, it was really uncomfortable. I was constantly tired, unable to articulate, which was very frustrating.

But for better or worse I had walked into that experience knowing it was temporary, that I had support on the other side of it, and it was set against that baseline, the other experience that was so demoralizing, almost like putting my humanity into a black hole. I never felt like that during my time as an inpatient here. And I told myself that there was no way it could be as bad.

Tell us how surgery and all your other treatments have impacted your identity, how you view yourself and your body, and how you view others?

JAH: As mentioned, I feel like I’ve experienced a paradigm shift on the whole concept of identity. And some of this happened during recovery from the flap surgeries and the other ones that followed. I had to reckon with the fact that I was never going to look and function in quite the same way. I had to deconstruct some of the notions of self I’d become really attached to over the course of nearly 40 years—that being verbally incisive and quick, articulate and well-spoken were parts of who I was, that being an adventurous eater was a given. I had to re-evaluate and let go of those facets of self I’d constructed.

I recall at the 2025 HNCA conference, one of the survivors mentioned that she missed her old face. I knew instantly what she meant. And it’s funny—I cannot tell you how many versions of this statement I’ve heard, from well meaning people, when we’re talking about the reconstructive surgeries I’ve had: oh, well you look just fine to me. Definitely one of the more tone deaf things people can say. Haha.

Our faces are the locus of how we understand who we are, how we construct and internalize those evolving stories about our identities, how we present them to the world. Losing the symmetry I’d grown accustomed to, the feeling, the function—it was difficult for me. But over time I started to understand something that sounds a bit odd to say out loud, but I know it to be true: I am not my face. I have a face, but it’s just one element. I should show it care and kindness without getting too obsessed about it, knowing that its shape will continue to change over time.

I try to show more compassion to my face, that took me some time. And same for other people with faces—I try to be more compassionate and understanding.

Tell us about how paragliding has impacted your identity and resilience.

JAH: [To audience] Who here knows what paragliding is? And no, it’s not parasailing. Who was tried it? If I built my identity around paragliding I’d probably be better at it.

After the first set of flap surgeries, I needed to prove I could take on a big challenge, so I remodeled the bathroom. Mind you, I was not fully rehabbed or recovered at this point in any traditional sense.

Later on, after another recurrence and surgery, I decided the big thing I needed to do was learning how to fly. Whole back story here that’s in the book, kind of the central theme actually.

Flying in the sky, alongside birds and other pilots (most of whom I know at this point) is life altering in the best way possible. It takes you outside of yourself and requires you to see the world from a very different vantage point.

Learning to fly helped remind me I can do big, challenging things—it’s certainly been part of my healing journey. And the community of people I’ve come to know has been life affirming, just like being cared for by Dr Barber, Dr Humphreys and the entire Oto team here.

Tell us what you would want all clinicians, regardless of whether they treat cancer or not, to know about interacting with patients and caring for them.

JAH: I gave this one a lot of thought in an effort to avoid the usual, prosaic answers, but before I respond, let me share my little test that I run on all new providers who see me—this would be anyone, but especially residents and fellows. I make a joke and see if I can get them to laugh. Occasionally they beat me to it or say something so unexpected it becomes a joke later on. There’s one involving Dr Marciano, is she here?

Anyways. Here’s my advice: encourage your patients, especially the ones who are struggling, to find something challenging, something that gets them outside of themselves. This isn’t going to be a prescription for paragliding for most I expect, but if they need some ideas, tell them to reach out. I’ve yet to meet someone who doesn’t have an ambitious project, a long-time dream, a travel destination, something they haven’t done yet but really want to do. Something they’ve been mulling over but haven’t taken action on. Well—do it now, find a way, ask for help if you need it. Redirect your attention to something that has nothing to do with your illness and make it a part of your recovery.

Part of what I’ve learned is that healing is something the patient helps shape as opposed to something that happens to them, that they should work towards having greater agency and a sense of ownership of the process, so find ways to nudge them in this direction.

Update: July 9

The situation has changed, the biopsy came back negative, which was a surprise to me, and I imagine it will be a surprise to my surgeon as well. I have not discussed the results in detail with her just yet, but will soon.

This is good news, but I’m thinking about it in a measured way—ultimately the long term trajectory has not changed. I still have a perniciously recurrent (if slow growing) type of cancer that has no known cure. I will probably have another recurrence within the next year, and then we’ll pick back up discussions about clinical trials and other options for mitigation. Thankfully, it’s not an immediate concern, and I can focus my full attention on the kitchen :)

The timing is never good. At 30, a career was beginning; at 42, it’s in transition. Several years ago I built a timeline diagram to help me remember all the spaces filled by recurrence and surgery and once again, I’ve lost count.

I hear this question a lot: “How’s your health?” It’s a polite way of asking if I’m actively dealing with something cancer related. My friends who’ve been on the diagnosis/treatment/surveillance carousel are more direct: “what’s your status now? What did your last scans show—all clear?”

I am a touch amused by the novel way this latest bit was identified. It wasn’t found with a scan or a scope, but rather was a bump I noticed, a dime-sized growth in the back of my highly altered throat1. It took a few days or maybe a week before I mentioned it to Lindsay and then a few weeks more until I was ready to admit what I already knew. For a while, I wondered if it was a gland I hadn’t noticed before. Then it started to grow and I was quite sure we’d entered the realm of abnormal.

We saw Dr. Barber and chatted about kitchen remodels for a while. Then the conversation turned—in our experience, whenever it opens with “I’m sorry…” what follows is a discussion of options, decisions to make, more trips to Seattle. I am still fixated on finishing the kitchen work, no matter what, poor timing be damned.

The words “clinical trials” and “experimental” and “rare cancer initiative” came up. I thought: Inconvenient, expensive, untimely, but I understand why we want to explore treatments. We seem to be at an interval that’s accelerating—more frequent recurrences—coupled with unpredictability of location. I imagine we want to try and head off an outcome where the space this pesky glob inhabits proves too risky to extract. Mind you, that’s not the situation right now. Surgery would probably be outpatient and I’d likely come home and work on the house. But the broader implications remain the same; we don’t want to stay in this loop and if there is a solution, we should try and find it now.

Dr. Barber used an instrument that looked like a set of micro-tongs to clip two pieces of the tumor. A long matchstick with a bulb of silver nitrate slowed the bleeding as I held a piece of gauze, forcing my jaw open with my hand, index finger set along the inside of my cheek. We spoke some more as I tried to keep myself from drooling or choking on the bundle of cotton.

I’m not surprised by any of this, nor am I disappointed, or particularly concerned— but I am irritated, slightly. I want my full attention directed in other ways. I want to make progress without being interrupted. I want to make decisions and plans that are durable, to take risks and stretch myself in new ways. I sat with these feelings on the drive home, sipping a bubbly water that tasted more metallic than usual.

I am trying to imagine how a mid-career pivot to an analogous role works alongside an experimental treatment regimen, if one exists. The risk and suitability thresholds for traditional roles (like the one I have now) vs non-traditional are inverted.

Non-traditional (self-employed, contracting, etc): probably much higher suitability in terms of how I work, my need for broad flexibility, my suite of interests, but risky (primarily health insurance but also variability of income).

Traditional (FTE in mid-size/large org, public or private): honestly, I don’t know that I can (a) convince myself to do this again, (b) find one interested in hiring me and (c) get the flexibility I need, but an assurance of benefits would be handy.

Problem solving is a space where I excel and none of this is intractable (although my cancer might be). I’m reminded of some of the big risks I’ve taken, where many unknowns existed and I decided to confidently go forward. In particular: moving to Washington and buying the house. Both were financially risky and both turned out pretty well. It’s unlikely Linds and I would own a home if we’d waited until present day; back in 2016, I didn’t have much in savings, and I sunk every spare dollar into the buying the house. It was a great decision. I find myself wondering if I am on the precipice of another big, consequential moment like that one and worry that the whole cancer gambit is clouding my judgment, steering me towards a safer but less fulfilling outcome.

The timing could be better, but here we are again at the intersection of career and cancer. The biggest difference this time around is that I have a lot more experience. I can’t remember the number of recurrences without a diagram, but I’ve learned so much and will continue to.

But my mind is arguably more capable, when I can focus it towards an objective. Lately, that’s been learning everything I can about frontier AI tools. I am now fully sold on the Claude ecosystem. The time I’ve saved researching various decisions points for the remodel (“which Bosch dishwasher meets my needs and is the best value?”) , building out detailed budgets, scaffolding complete web apps and then creating them iteratively with the help of Claude code—it’s like having an always-on personal assistant who is also fluent in every software component that currently exists. The speed and precision with which a technically competent person can take an idea from prompt to working digital tool is simply astounding1. And while I have a strict red line when it comes to AI and creative writing, composing prompts, using description as instruction, feels a bit like art. It’s another occasion to write, to think textually, to build context and map ideas and objectives.

At work, we are behind the 8 ball on all of this, unsurprisingly, mired in conversations about how to prevent people from clicking the new buttons, instead of thinking imaginatively about how these new paradigms will radically change how we work. I’ve been pushing on the need for a comprehensive business AI strategy—whether that will yield any near-term results is another matter.

I stepped away from work and computers and house projects in March, to travel to Central America. My time in Honduras was lovely—sunshine and dusty roads, flights from a mountain site set against a wide valley. I challenged myself while in the air, made new connections, and stepped outside of the frenzied chaos of our country. I finished a book about the history of the modern dictionary and shared a few copies of my book with new friends, pilots who came from near and far to be in Honduras. I am eager to return next year.

I’ve mentioned before that the scope of the kitchen remodel is large—it’s an ambitious undertaking, one that will test my skills. Two smaller projects of late have boosted my confidence heading into the kitchen work, one planned and the other not. I built a set of custom bookshelves and replaced a defective solar inverter. With each effort, I can feel myself becoming more patient—this has been a struggle in the past, where my eagerness to do something results in mistakes or compromises. Often, doing nothing until all of the prep work is done is the best approach, which requires patience; seeing the materials waiting to be shaped but knowing that your shop is not yet ready and that must come first.

There are new developments in the volunteer work I do—planning for the paragliding competitions in Chelan is underway and I’ve been able to leverage my software savvy (with Claude’s help) to make this set of activities easier for everyone involved2. I’ve been reminded of my years as a Product Owner, working closely with my developers, with business folks, actively shaping the vision and direction of a new tool. It’s experimentation that’s play-like, where ideas and inputs come from all directions, and collaboration yields tangible value.

In parallel, I’ve stepped into a leadership role with a nonprofit I joined about two years ago. My focus is mapping out a strategic direction, stabilizing and improving core processes and platforms, and building out the board for future growth. The connections I’ve made and continue to make in the flying community will serve me well and I’m beyond excited to grow this organization and do more good around the world. I am feeling optimistic, and I know the sunshine helps.

I told my boss recently that I was tired of working for our organization, in my current role; tired of being at the nexus of healthcare policy and politics, on an endless see-saw ride. I’d hoped to move on before America rolled the dice once again, re-electing someone who tried to dismantle the ACA last time around. But that didn’t materialize—I returned to the same place after my sabbatical and here we are.

What tends to happen when I’m tired or bored (usually these states are interrelated) is I find a new project to dive into, or restart one I’d shelved in the past. Over the past few months I’ve done both: I built a home server and I taught myself how to create applications leveraging AI. The latter also dovetails with another body of work—helping Lindsay sell through remaining inventory from her primary online store as she scales down and refocuses her business.

Some backstory and context: I know a fair amount about what goes into designing, building, releasing, and maintaining software products. This is the work I’ve been doing for over a decade, in various product roles on software teams, and now in a managerial capacity. The role of developer is one that’s always fascinated me and I have a broad understanding of the work they do. In fits and starts, at various times, I tried to learn how to write code. I started with javascript and python, took online courses, read books. But the foundational concepts of these languages never seemed to click and every attempt would end with me quitting in frustration. The language of code feels unnatural—too abstract, too much like math (which I was never good at). I could imagine things I wanted to build, I could describe them, and I understood where code might be employed, but I lacked some fundamental way of conceptualizing the language.

I dabbled with low-code platforms that use business rules, tools what let you connect different apps together, but I’d usually bump up against some limit, either in the logic or the price. A few years back, I took this a step further, with an early agentic tool that would write code for you based solely on plain English prompts. It worked—kind of. I spent countless hours debugging with the AI because it would constantly make stupid mistakes, syntax and formatting errors, or worse. We’d go through cycles of this and while I eventually made some progress, the tool was so error prone that I was unconvinced of its utility.

About a month ago, I decided to see what the latest generation of AI development tools could do. There was another project--migrating a large product catalog (20,000+ items) from Lindsay’s old site to a new location, primarily so the descriptions and photos would still be available, even as we turned off the old sales platform. Within hours, I had a working prototype and a project plan, constructed with the help of an AI agent, which felt like magic. I started having lightbulb moments, tools and concepts I knew about but hadn’t used before all start to make sense in context—IDEs, git, automated deployments. The experience has been revelatory. I am able to use skills I do have (writing, planning, architectural thinking) to build actual working software. And I’ve begun to map out ways I can leverage these tools and the capabilities they confer at work, home, and for small business ventures.

I was, admittedly, a AI skeptic at first1. The early chatbots felt like tech fads, little toys that didn’t provide much practical value. The smarmy, overwritten output, all saturated with pointless metaphor annoyed me2. My recent experiences building things with the aid of an agent changed my mind and I’d consider myself sold on the notion that this is the future. Increasingly, I hear what people like Andrew Yang, Mustafa Suleyman, and Dario Amodei are saying—predicting that we have a 1-2 year timeline until AI agents and the models that power them can do many/most white collar knowledge work jobs—and I think yeah, I see it, based on my experience, if we continue on this trajectory it seems like this is exactly where we are headed.

The prospect isn’t frightening from where I sit right now. Mostly, I see opportunity. If this is coming, then now is the time to prepare, to learn to use the array of tools currently available, to build knowledge and experience with them, to practice training agents to do work for you in ways that make sense. All of these developments are very exciting—it feels like we are living through a period of unprecedented technological change, and I’m eager to see where it leads.

My yearly self eval is a story of work projects and personal ones bleeding together in curious ways. I continue to wrestle with this generalized sense that I could be doing more—taking on more responsibilities, contributing in new ways; I don’t feel stuck (not anymore), but I do feel unempowered, like a bench player who is ready but rarely called upon. Maybe this is just part of how careers go. I’m learning to be less reactive and more hopeful, to push in a direction without being too attached to a particular outcome, to seek contentment.

“Hutton, 3/17/84.”

The registration desk at the surgical pavilion was darker than I remembered. A middle aged, bearded man in a Seahawks jersey looked at me, listening, nodding, glancing down at his roster.

“Now that is a great birthday.”

Why yes, it sure is. I told him most people don’t put it together, the 17th of March being St. Patrick’s Day.

With an ID bracelet on, we sat for a spell near large windows. I opened a memoir I’ve been willing myself to finish, slowly. I’m called back and the CNA seems to notice I know exactly what to do—I explain I’ve been here a few times before. I disrobe and burrow into the gown and hospital bed, jotting down observations on my pocket notebook. I am hungry but resolved to stay in a bright, cheery mood.

A nurse who is probably an IV whisperer (every hospital has a handful of these people I imagine) stops by and starts asking questions about my surgery so she can poke me accordingly. I explain I’m having a tumor removed, a cancer in my nasal area. She decides the right arm is ideal because it is—the vessels on the left have been modified significantly, owing to the harvest of the forearm flap.

I watch her prepare, tightening the rubber tourniquet around my arm, just above the elbow, gently tapping and massaging the vein she’d like to use. She numbs my arm with lidocaine and inserts the needle attached to the end of the IV catheter. She waits, pausing briefly, using the fingers on her other hand to move the vessel back, adjusting the angle and direction of the needle, and then effortlessly glides the flexible tube in and needle out in a single motion. Blood fills the space between the tiny hole in my arm and the pale blue plastic bit with the bright green cap. The IV is secured with tape and I continue to wait and listen and write.

I meet Caesar next, my pre-op nurse. He says he will take great care of me and keep me apprised of what to expect before and after surgery. We go through a list of screening questions that are mostly no’s until we start talking about implants and cancer. Caesar’s affect, his presence in the room, the way he speaks to me—I know he is a kind and caring person and an experienced nurse. When you’ve done this long enough, you notice the newbies, the staff members trying to get their bearings, fumbling a bit, awkward and earnest. They stand in contrast to the seasoned nurses who move with confidence and authority, the best of whom guide a patient in the way that best suits their needs. In that first meeting they are assessing, picking up on little clues.

Caesar tells me he appreciates that I’m smiling and laughing right before surgery. I tell him it’ll be more of the same after I wake up from anesthesia. He fetches Lindsay and the three of us are chatting about my surgical history, the challenges of healthcare in the COVID days. He tells us stories about holding up iPads in the ICU so patients could see their loved ones. I imagine this has weighed on Caesar, but also informs how he cares for others, having been so close to pain and death, seeing others suffer and mourn from a distance.

The OR nurse stops by next and we talk about the gameplay for today. He seems a bit stiff and uncomfortable, interacting with patients who are awake probably isn’t a big part of his job. We talk about implants and removables again and I show him the containers my hearing aid and obturator will go in before I’m rolled to the OR. He departs and Dr. Humphreys appears, casual as always.

“Hey, it’s Ian”

He asks if we have any concerns (we don’t) and then I pepper him with questions about the craft of surgery. He tells me how, in the past 10 years or so, there’s been real advancement in the foams, liquids, and lattices used in surgical settings, whenever tissues are being removed. He also recommends I check out sinusvideos.com to sate my curiosity. We talk for a bit about his fellow, Luke, who will be part of the surgical team. We’d met the Aussie doctor during a prior appointment and he’d quickly passed my version of a litmus test, which is how quickly I can get a provider laughing or vice versa. Upon meeting Luke, he apologized for running late, noting that he’d been reading my chart.

“Yeah, makes sense, there’s a lot there”

We both laugh, knowingly. None of this needs to be too serious.

I don’t get a chance to greet Luke but I’m pleased to know that he’s involved and my case is part of his surgical fellowship.

Jeff the anesthesiologist introduces himself. I notice he is the attending physician, based on the tag below his name badge. We go over all of my risk factors for general anesthesia, which is a short conversation. Jeff says that even my cancer isn’t really a contributing risk—I am basically the most boring and straightforward case an anesthesia team could ask for. Funny how that works.

Jeff’s surgical assistant is ready to take me to the OR—hearing aid and obturator stowed, cap on, and we are moving down the hallway. Moments ago he’d asked if I wanted some Versed. Why the hell not? The feeling of relaxation and calm is nearly immediate. I wasn’t worried or anxious so this is all upside, just pre-op bliss.

We are in the OR and I slide on to the table. It’s not as cold as I remember, perhaps because my time here will be brief. I am breathing deeply and smiling a little, tranquil and calm. The oxygen mask is my last waking memory.

Nurse Kevin is moving me from the OR to recovery. I am fully awake and he is surprised.

“Oh wow…you’re awake already. Okay.”

Kevin brings me applesauce, jello, and juice and then we are talking about prescriptions—pain meds I probably won’t want or need but decide to pick up anyways.

The drive home is uneventful for a Wednesday afternoon. I agree to relax, just for today, even though the surgery was more like a trip to a day spa. I feel lucky.

Below the stairs, within the room that’s become my home office, is a small closet. Years ago, I took the door off because its outward swing into the room annoyed me. If a door can hit another door or doorway by virtue of being opened, well that’s a problem. The door had to go and in its place I built a set of shelves set between the door frame. I even painted it to match the surrounding walls and added trim. Quickly, the shelves were filled with books and journals and…networking equipment.

I didn’t set out to have this built in shelf become a hub for our home network, but that’s what happened—a matter of convenience mostly, a place where wires and switches and components with green and yellow blinking lights could be stowed away, out of sight. It’s served this purpose well, but now I am rebuilding it, making better use of the tiny area, adding more functionality, and bringing a level of order to this little closet. No longer will the shelf hold books and oddball items like box knives and extra pens—it will be dedicated to rack mountable equipment, a version of something you might find in a mid-sized office building, a professional-looking setup that wold be immediately familiar to a network technician. The jumble of cables and wires will become tidy, all bundled together, labeled and orderly.

Is this overkill? Perhaps, but aspiring to this level of organization, creating models and diagrams, crafting a vision for a physical space… it’s deeply reassuring, calming, almost meditative. Lately, I wake up in the morning thinking about these components, how they will fit together, what purpose they will serve. I have a vision that is singular and immediate; the preoccupation is a sort of joyful obsession.

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The rest of our house, in its present state, is at once highly organized and somewhat cluttered. The beads and bits all packed and labeled hang from pegboard hooks in sequence, by section. Our collection of vinyl records, similarly, live in alphabetical order, tucked on a shelf beneath the turntable. And in the shop (which is overflowing with items displaced from our home to make room for inventory), a wide variety of tools have permanent homes, in drawers with labels or spaces on wall racks, little magnets holding them in place until they are needed.

Sorting like with like, ensuring the right things are cataloged and placed in an accessible and memorable location—I daydream about this. I imagine all of the cables and adapters we own, where they should live, how they would be labeled. I also ask myself: if I was giving a friend instructions on where to find something, (let’s say they are housesitting while we’re on vacation) how could I organize things to make this as simple as possible? “Go to the office—the orange room at the end of the hall—there’s a drawer beneath all the computer type stuff, pull that out and look for a container labeled ‘A/V’. You’ll find the HDMI cables there.” With this in mind, I ordered more of my favorite crates and sorted every cable and adapter and part. They will all live in a deep drawer beneath the rack that houses the brains of our network. I will not need to wonder where something is, I will know definitively.

It’s possible this search for order, the desire to exert control over objects and space is the product of my lack of control over the pesky cells that continue to grow and shift positions in the walls and tunnels of my face. The only part that’s predictable is the cycle of recurrence—every one and a half to two years. And here we are again. I have another tumor and another surgery will happen early next month.

I’m thinking past this occurrence to the next one, the path that aberrant cells will follow. Will they breach an area more fragile, deeper in the recesses of my bespoke facial anatomy? It sure seems likely, or perhaps we will keep playing whack-a-mole in the same spot, excavating until we must rebuild. Maybe bony intrusion happens again, complicating matters. There are a myriad of scenarios and I’ve considered most of them, meditating on how I would approach the decision making, knowing that I’d like avoid another set of life altering reconstructions. But it’s impossible to predict what choices I will face. Right now, I am more concerned with the closet.

The whole point of running all these wires is bandwidth and reliability. Wired connections carry greater volumes of information, without being subject to interference and obstacles as wireless ones are. Copper is steady, but it does require more effort to install. I’d run ethernet wire before, in a somewhat haphazard fashion, down through the crawlspace, up again into the desired room, peeking out through a hole in the floor where a vent register once was. I didn’t go to any great lengths to make the install look tidy—all that mattered was function.

I’ve been thinking more about what it means to make things that are durable, designed for now while mindful of the future. The closet project is also a test—can I deliver on an idea? Will my body cooperate? The act of writing the book was physical, in that I wrote it by hand and sat for long stretches of time, but building a space out of wood and wire and drywall is a very different sort of labor.

I found myself back down in the crawlspace over the past few weekends, pulling wire, bundling it together with length of velcro cut from a roll, attaching special zip ties to floor joists, lifting the data lines off the floor. Last time, I hadn’t really planned ahead—I’d run just enough wire for what I needed, but now I was considering the future, where a newly finished kitchen makes a living room update possible. The network cables will already be there, waiting to be pulled up, arranged in a box, terminated, tested, and labeled.

The wires are where they need to be and we are on schedule. This is the sort of confidence I need for a kitchen project, and the upcoming surgery is a brief detour. The sheer amount of work involved is daunting, the investment significant, and the impact decades-long. I wouldn’t want to walk right in without first demonstrating my ability to construct something, to be reminded that I haven’t forgotten.

As 2024 came to a close, I imagined that 2025 would be centered around writing, although I did not know what form it would take. I’m still amazed that Unflappable: Soaring Beyond a Diagnosis became a reality last year.

Now that we are here, in 2026, let’s talk about the high-level plan, what we’re aiming to accomplish this year. As usual, I’ll be sharing this journey with all of you—what I learn and discover, observations and themes that connect to my life to yours.

Goodbye beads, hello new kitchen

My wife is a business owner and solopreneur—and I’m her consultant/bookkeeper/developer. Acquiring the bead business was a big leap, one that required a lifestyle adjustment. Our house is, functionally, a warehouse. The scale is challenging for people to imagine until they see it in person: 11,000 different products and somewhere in the neighborhood of 170,000 individual items. Mind you, this is only what is currently listed online. There’s even more back stock, which is why we have a shipping container parked in front of our house.

Helping Lindsay acquire, move, and stabilize the business over the past 4 years has been full of surprises and I’ve learned more than I ever would’ve expected about the wide array of products used to make beaded art and jewelry. Our walls are full of color and texture—neon, metallic, translucent, matte. I enjoy looking at these objects even as I lack the skill to make anything out of them. We live in a gallery of sorts and every wall is a display, filled with hundreds and hundreds of items.

Not everyone would want to work with their spouse or live in their business, but we’ve had a good run. We’re able to solve problems together, we craft goals and work together on marketing; we strategize and bounce ideas off each other. I’ve had great fun supporting her, watching how deftly she can (simultaneously!) manage sales, customer support, and shipping workflows. She also knows where everything is, which is amazing.

But online retail is a tough landscape these days. In the beading space, consolidation, tariffs, and demographic changes have been squeezing out smaller players. Early on, Lindsay had two part time employees, downsized to one and then none. We tried to stabilize and then grow, but only managed to succeed at the prior. Sales have been on the decline and the workload investment no longer matched up with the return. So my wife decided to close down the main site, liquidate everything, and then refocus on a narrower set of higher margin items—after taking an extended vacation.

The beads are both a catalyst and dependency for the next BIG project: a full kitchen remodel. It’s a catalyst because the sale of the remaining inventory will help fund the project, and a dependency because work cannot start until the beads are gone. Like the business inventory, the scale of the kitchen project is large—every surface in a space that’s nearly 300 sq ft, the second largest in our modest house. The design-level planning began back in 2021, as I was learning 3D modeling in Sketchup. I picked the design work back up a few months ago, slowly adding more detail, refining the model, creating a template for discussion and decision making.

With the design nearly complete and planning underway, demolition will hopefully start in April, and I am confident that the new kitchen will be a reality by late summer or early fall 2026.

A bit of travel

My hope is to travel to Honduras and fly with my friend Jacob, but the priority here is a real vacation for my wife. She’s been able to take day trips and weekenders, but the realities of her work have made it challenging to take extended time off. We are going to change that in 2026.

Last year I ventured to Colombia and France, worked in Chelan, and popped down to LA—but this year, Lindsay’s itinerary comes first. She wants to go to Hawaii. I might go, or I might stay home with the dog.

It’s been a while since I’ve been to the northeast or southeast states, so this year plan to spend a week or so on the east coast. I’ll be attending a HNCA conference in Boston, and perhaps visiting friends in New England, along with a stopover in Georgia to see family. If you live in/near these places and would like to meet up in July, please reach out.

The next writing project

I am going to write another book, the question is when. Just like the kitchen, there are dependencies. What I want to write is more ambitious than a memoir, more involved—there will be research, interviews, deep study—and it will resemble a full time job for a period of time. Right now from where I sit, I imagine it will take a solid year to write. Can you spot the impediment? I already have a full time job. In order to press pause on my current career, I’d need another mechanism to pay the bills (alas, we are not independently wealthy). This may be too far afield, beyond the realm of reasonable expectations, but I have some ideas and intermediary steps to try, experiments I’m going to run. And yes, I will share the details here—my plan, progress, setbacks, and successes.

I am excited to take on new challenges this year, to work with my hands, to design and then create in physical space. I’m fortunate to be married to a highly capable and independent woman, and I look forward to helping her wind down this venture and kickstart the next.

Lastly: is one of my idols on this platform and I love this piece of his about personal libraries. Soon—in the next month or so—we will have a custom, full wall set of book shelves to house our collection of books.

Here’s what the living room wall looked like for the past 3.5 years…

And here’s what it will look like with our new shelving (imagine them filled with books):

Exciting times ahead!

Writing

If I were to describe the mindset I adopted for those months of writing and revising, editing and rewriting, I find many contradictions and opposing forces:

• strident dedication with openness to criticism

• rigid timelines belying measured expectations

• vulnerability alongside distance

• the story separated from storyteller

There were moments when I could not locate any good reason for writing a memoir and then others when I was impressed with myself, convinced I had something worthy of print. I don’t know how you do something like this without, occasionally, feeling batshit insane. And the pace, the relentless context shifting back to my day job… on the other side of this effort, I am more resilient, and aware of the effort involved in producing a book-length work.

I walked into the project with intention, with modest goals—to write a book to prove that I could, to share my story, and to have a reference point for another, more complex writing project. Pointing my attention at something for 20-30 hours a week for six-some months yielded a respectable first book—what if I had 40-50 hours a week for a year? More time coupled with experience.

The ambitious writer in me is pretty sure the result would be an award winning patient/physician meta story on par with Gawande and Mukherjee (and certainly Fogg). The skeptic in me, cautious and risk-averse, wonders if the lifestyle changes required to take on a project of this magnitude make sense at 42. I will be weighing all of this in 2026, taking intermediary steps, seeking advice; it is reassuring to know that you are capable, that you can do something because look, I’ve already done it, I can do it again.

This theme, using language in written form to tell stories, is the common thread for 2025. I love this work and feel compelled to do it, even as I don’t quite know why.

Travel

I went to Colombia in February with Anton and Jeremy, but it feels like the trip occurred well over a year ago. So many events have taken place in the intervening time that it’s difficult to imagine them all fitting within the past 12 months. We went there—via Miami—and flew with old friends and new, rode motor scooters around town, bounced in trucks up mountains, and soared the sky with birds of prey.

The Colombian people were warm, curious about us gringos, but usually the sort of curiosity that gives way to a smile. I tried learning some Spanish beforehand but my hearing loss (pre-hearing aid at this point) made communicating challenging. Gestures and smartphones were our aids when a more fluent friend wasn’t nearby.

I did some writing on this trip, but mostly I took notes. I filled my little pocket notebook with sights and sounds from the prior day, usually in the morning over coffee at the little cafe down the street from our hotel. If you’ve read the book, you know that the final chapter is entitled Colombia—I wrote the first version of it shortly after returning home. I was re-energized, having just lived the story, and then I immersed myself.

The trip to France came at the end of an eight month long sprint—writing, revising, rewriting, proofing, then submitting for publication. I needed space from the book before I started promoting it, and a break from all writing-related work. The flights in and around the Alps were a welcome reprieve, and I was surrounded by familiar faces, flying friends and mentors. The French people may have been amused by our boisterous group, but we were generally ignored.

I finished Percival Everett’s Erasure on the flight home, which was a welcome distraction from the cramped space I inhabited for nine hours. In my 30’s, didn’t travel much, but in 2025 I ventured to South America and Europe. My perspective on the world shifted ever so slightly—the aperture widened, I learned new words. I was awestruck, standing on or below mountains, flying around and above them.

Connection

The process of combing through the interiors of my life over 10+ years was intense, and often an exercise in sitting alone. The creative work was decoupled from the collaborative—produce the drafts, share them, receive input and guidance, and then ideate and create again. To finally have the story done, published, printed, in hand, and connect with people who read it, was deeply rewarding. I understand now something I didn’t before—I am legitimate now, a real writer, for having done this. Does that also make me an artist? Perhaps, and I have felt what it’s like to be in front of people reacting one’s work, sharing a piece of one’s self, using a skill not everyone possesses, with a wholly unique voice. What a gift.

I reveled in this form of connection—I felt stronger, confident, more certain that I’d made the right choice. I had a new reason to gather groups of friends together (I’m always looking for reasons to organize events), to share and celebrate, and marvel at our lives. Putting this book out has led to many life-affirming conversations—and I’ve also been reminded of past connections: old friends from decades past, names that stir emotions and memories. I also happened to reconnect with someone who was an important figure in my college years, a professor during the my time in Oregon.

Just a few sentences in the book cover this period, but it’s fair to say that Doug Frank and the cohort at our little campus outside Ashland helped shape the trajectory of my intellectual life. Recently I opened an email about Doug’s second book, which has been in print for fifteen years. Right away, I sent him a note. I was surprised to learn that, for the past 6-7 years, he’s been living not too far away, up north. We reconnected over pints after a recent appointment with Dr. Barber.

I am working my way, slowly, through Doug’s book, A Gentler God. By the time we met, he’d already finished my book. I told him I was surprised to be an author. I thought about the other kids in the 2005 group, how I’ve lost touch with all but one. I remembered the feelings of deep antipathy and then estrangement when it came to the Christian faith, how I was exploring other ways of thinking, charting a philosophical course towards atheism. I had permission to explore ideas there, without judgment—a stark contrast to the home campus at the University of Least Resistance. I can think about that time with more equanimity now, but for many years, I was angry, deeply hurt, defensive.

There’s another person I connected with this year, a name you’ll find familiar if you’ve been keeping up with our recent posts—Jacob. I don’t really believe in fate or destiny or any of that—astrology and woo-woo the universe stuff is not my gambit—but sometimes the timing of when you meet someone feels like intelligent design (it’s not of course, because that’s hogwash). I’d been looking for someone to partner with creatively for two years, someone to write alongside, to share ideas and stories with, a person who writes with purpose and intention. I knew they were out there but I didn’t know how to find them. I did know that I wouldn’t have the time or patience to network my way through writing groups where fiction dominates and matters of identity are sacrosanct. Thankfully, Jacob found me. We have not met in person just yet but we write and work together, between the margins of our day jobs. My intuition tells me this is just the beginning.

Writing and travel, my book, and random chance have yielded new connections, and I am deeply grateful.

Change

I just finished Octavia Butler’s prescient, apocalyptic sci-fi saga—The Parable of the Sower and The Parable of the Talents. In the story, a new, forward-looking religion is formed around the idea that change, unavoidable and impersonal, must be embraced so humanity can survive. The narrator and protagonist builds a belief system from a single phrase, a piece of poem she writes in her youth. She’s not entirely sure where it will lead, but knows it to be true: God is change.

I try to live and write with this adage in mind: hold ideas above identity. I’m still figuring out exactly what it means, but having spent much time reflecting on the changes I’ve undergone over the past decade or so, I know that identity is a moving target. I am not the same now, having written this book, as I was before I started. Indeed, in the story, I wrestle with the concepts of identity and self—I defined who I was, attached my sense of value to an identity (career person, boyfriend, homeowner) and an image, a notion of a face (an ideal form, something changeless). That attachment caused me a fair amount of suffering when life changed.

This year, Lindsay made a decision that requires large-scale change: she is closing her primary online store, liquidating the inventory, and stepping away from work for a while. I am proud of her for making a big difficult decision, for setting a new direction, and prioritizing her needs. It’s been thrilling to help her navigate the complex and occasionally infuriating landscape of small business ownership, and see her excel as a soloprenuer. Bringing this business into our home involved a lot of change, as will scaling it down and selling it off.

One of the reasons I set out to write the book was because I wanted to understand how I’d changed. I knew I had—ten years living through cancer and reconstructive surgeries had shaped my life in profound ways—but how exactly was I different now compared to before? What was that process like? What did I learn along the way? How did I grow?

There will be more change in 2026 and thinking about it is exciting—new business ideas, new places to visit and sites to fly, new friends and stories and things to learn. Maybe the start of a second book. This year has been full of so much life and color; I am grateful for the time, the people who have ventured with me, if only through the stories I’ve written.

Writing, travel, connection, and change are my words for 2025. What are yours? Please share in the comments below.

Our remarkable sport gifts us many frustrations: lines knotted as if tied by malevolent forces; landing softly in a wide-open field, only to have your wing come to rest gently atop the only tree in sight; gnarly takeoffs where grit and brush transform the crisp white nylon of your glider into a dusty chocolat…

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I’ve been thinking about attention—the act of focusing it (on a place, an activity, a person, a sensation) and the methods we use to seize hold of someone else’s (a letter, an email, a text, a post, an advertisement). Reading a book requires dedicated attention, but further upstream, you need to be aware that it exists, an…

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Introduction

Let’s linger on something for a moment, call it a thought experiment if you like. Think back, in time and experience, through all the years you’ve been alive, and center yourself on a moment or an event, one that’s seared into your memory, ever-present. Maybe just recollecting it is uncomfortable, that’s okay, stay with it. Perhaps you’re thinking about a physical challenge—an illness you endured or witnessed, an injury, a disability. Or maybe the struggle was more ephemeral—a conflict, the loss of a relationship, an emotional wound that lingered, a crippling insecurity. Is it in your mind now, front and center? Now, consider what living through it has taught you. What did you learn from the experience? What are you still learning? I believe that suffering and hardship, unavoidable as they are, can teach us about ourselves, the sort of people we want to be, our priorities in life. The book before you is about the idea of peering into life-altering pains and difficult moments and finding a truth, maybe one that wasn’t known to you before.

It’s also about paragliding.

When you really get to know someone, over the course of many years, their eccentricities and hang-ups will inevitably bubble to the surface. Here’s one of mine: certain idioms and phrases, identifiers and labels that are commonly used in our culture, just rub me the wrong way. Like “cancer survivor.” Yes, I’m aware that it’s on the back cover of this book. It’s shorthand, two words that capture and describe events we’re all broadly familiar with; many of us will experience the cancer part one day, although not all will survive it. For some people, this term becomes an important part of their identity, which is another theme throughout this story—what does it mean to be given an identity, one you had no choice in? And how important is it to adopt a new one?

I can tell you’re eager to hear more about the flying stuff, which—importantly—is not parasailing. Paragliding is a sport you will learn a lot about in this story. A few things you should know: I am not an expert. I’m still a relatively new pilot, someone who has spent far more time writing than flying, so please do not consider this narrative as advice on how to fly. Flying any sort of small aircraft is dangerous, so do not attempt it without proper instruction. With that said, I encourage everyone I meet to try it by taking a tandem flight with a qualified instructor. Paragliding, and the community of people around it, have become an important part of my life and I hope some of that magic shines through in the story.

Back to words and labels that I have a hard time with—inspiring, specifically when used to describe this author. There are plenty of people in the world who gladly affix this label to their real or online personas, many of them have workshops or downloadable content you can buy. I am skeptical, which in turn gives me pause about making any such claim for myself. Perhaps my grift detector is too sensitive, I’m not sure. I wish there was a better word, because inspiring feels so fraught. This is another theme you will encounter: sorting through the differences between your conception of self and how other people see you, learning from other perspectives by shifting yours.

A few other things you should know: this is a memoir, a work of non-fiction about real events that occurred in my life over the course of sixteen-plus years, and they are recalled through the lens of my experience and memory. Where possible, I have fact-checked, interviewed, researched and confirmed, ensuring the story is accurate and truthful. Some names have been changed, but most of them have not. Writing this book—like my journey with cancer and my dream of paragliding—has altered my life in beautiful ways I never would have expected and I am so thrilled you are here now, reading it.

National pride is a palpable thing in France. The suburban hotel, just outside the city of Grenoble, displayed regional products in a glass case—Chartreuse, honey, and another food product that was probably spreadable, but unfamiliar to me. The cars are smaller, the bike lanes and footpaths more generous and prolific; the attitude towards being outdoors…

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How you can help

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