Interview with Dr. Barber
UW Med, Otolaryngology Department Talk
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.
Chemo and Radiation Therapy
Osteoradionecrosis