The Sounds of Silence
The Sounds of Silence
Faced with chemo, musician Anu Kirk had to choose between an older drug that could take his hearing or a newer one that might not even work.
On Valentine’s Day, 2018, Anu Kirk learned he had throat cancer. “I pretty much knew it was coming,” he told me, because at that point the lump on his throat had been there for two months, and a foreboding ultrasound had led to a “fine needle aspiration biopsy,” which was reviewed by an ear, nose, and throat specialist, who delivered the verdict. “I had a pen and paper and started asking questions: ‘What are my odds? What happens next? What is the technical term for what I’ve got?’”
The technical term was squamous cell carcinoma, and the line of questioning was typical of Anu, a curious, careful thinker. I first met him when we both worked at a music streaming service, all the way back in the late '00s. I was a fish-out-of-water music journalist who’d lucked his way into a tech company, and Anu was the brilliant product manager who helped me understand what tech companies actually did. Since then, he’s gone on to lead VR strategy for even fancier tech companies, and through it all he’s produced and performed music.
This last point is crucial, because it played a huge role in Anu’s cancer journey and in the choices he made when he discovered one of the side effects of his chemotherapy could be hearing loss. Anu was kind enough to share that story with me, as well as his experience volunteering as a patient advocate at UCSF following his recovery. The conversation that follows has been edited for length and clarity.
When I was diagnosed, I was so sick and so scared that I did very little research on my diagnosis or course of treatment. You did the opposite. How were you able to focus amidst all the fear and uncertainty?
In general, I’m a problem solver. And the way that I was raised left me a little disconnected from my emotions, which is something that I've been working on. But when presented with something like this, my number one priority was to understand what's going on and prepare for what's coming, to the extent that's possible. Before I started my research, I was asking myself, “Is this a death sentence?” I mean, we're all going to die at some point, but does this mean I’ll be dead in a month or two years? I just wanted to understand what was going on.
The other thing was that the ENT had said that chemotherapy [for this type of cancer] can cause some hearing damage, and I wanted to understand what that really meant. I've been a musician and music lover since I was single-digit years old. It’s one of the core pillars of who I am as a person. That was something that really crystallized for me when I got this diagnosis, and was told, “Hey, the price of saving your life might be your hearing.”
The final point I would make is that from my own personal experience, doctors, particularly cancer doctors, are busy people. They don't have hours to spend with you explaining things. I figured one thing I can do is I can go in there really knowing my shit. I can do some research so I can ask smart questions and make the most of the tiny slice of the doctor's time that I was going to get.
And so you told me you arrived at your first oncology appointment with six pages of notes. This exemplifies something I’d all but forgotten, which is that, as the patient, you're the one who's in charge. The buck stops with you, not with the doctors. Did you have that mentality when you went to that first meeting with your team?
For me, I needed to be sure that whatever the outcome was, that I could be confident that I had driven the decisions. The chemotherapy was the one where the negotiation really started, because I pretty quickly learned that in my case, the drug they wanted to give me was called cisplatin, and it's a very effective, very low cost, very old cancer drug. It's one of the first chemo drugs that they developed. And it's great at killing cancer cells. Unfortunately, it can cause severe and permanent hearing damage in something like 80 percent of the people that take it. And that hearing damage ranges from loss of frequencies above 8 kilohertz—and anyone who knows anything about sound knows that that's actually pretty significant—all the way up to being completely stone deaf. And from what I was reading, that deafness can start as soon as hours after your first infusion. That was terrifying for me. So I started looking into what the other options were. That was what really opened it up because I walked into my very first meeting with a doctor saying, “I don't want to take cisplatin.”
That strikes me as such a difficult choice. On the one hand you’ve got a drug with a proven track record that comes with an 80 percent chance of hearing loss, but on the other hand you have drugs with fewer side effects whose efficacy rates may be lower. In your case it was an immunotherapy drug, right?
Yeah, it was what they call a monoclonal antibody, erbitux is the brand name and cetuximab is the generic name, but it is a newer drug. It’s not technically chemotherapy. It's what they call an infusion therapy because it's a monoclonal antibody, not a chemical. The definitive A-B trial had not been done—it was actually in process at the time that I was going through therapy. But I thought it looked like a viable alternative. So I went in and talked with both of my doctors about it: Can I do this drug instead of this one? How would you feel about that? Have you ever worked with it before? What experience have you had? How much is it going to change my odds, if you can quantify it?
Could they quantify it?
Sort of. One thing I am aware of is that medical statistics are an imperfect science. I asked my doctor, “If I swapped this one drug for the other, are we saying this is going to cut these numbers in half? Or is it going to drop them by 10 percent?” She was like, “It's not going to cut them in half. It's more like it's going to drop them by 10 percent.” They're reluctant to give you specific answers like that, because they can't really say.
I still trip out on that. A 10 percent reduction in efficacy versus an 80 percent chance of hearing loss. I don't even know what I would decide.
I started from a place of assuming I was going to survive the treatment. And being relatively young, if everything worked out, I figured I had at least 30 or 40 years to live with the consequences, to live with the side effects, whatever those were. And at 48, the idea that I could live another 30 or 40 years but not be able to listen to records, not be able to play music, not be able to hear me my wife telling me that she loves me—it sounds a little melodramatic, but I thought: I don't know that I would want to live like that. So for me, if you're telling me that my odds are going from like 85-90 percent down to 75-80 percent, I'll roll those dice, if it means I get to keep my hearing.
This is why I was saying I needed to be comfortable with the decisions. If I was going to change my odds by taking a nonstandard treatment, I had to know, in my mind and in my heart, that if they said, “Hey, bad news, you rolled the dice and the treatment didn’t work,” I had to be comfortable with the idea that, well, maybe if I had gone deaf, I'd still be alive. And I got to a place where I was comfortable with that.
I want to talk about life after cancer. You became a patient advocate at UCSF following this experience. How did you get into that? What are your duties in that role?
I have to say, the treatment I received at UCSF was so good that I was embarrassed for having such low expectations about the medical experience. They talked to me, they knew me by name, they cared about me—that made a huge impact. And I thought, I need to do something. How can I be of service? And so I talked with my doctor about that. And she said, “Well, you know, you could become a patient advocate.” It’s a volunteer position and you have to apply for it. Mostly what I do is sit on Zoom calls and listen to doctors talk about experimental study design. And if I have an insight or an observation or question, I can jump in there just like any of the other doctors and I'm a resource in case they want a patient perspective on it.
Has serving as a patient advocate helped you develop a better understanding of how the medical side of things works?
One thing that's important to note is that designing the studies is very difficult. To tie it back to something more concrete, one of the questions I had was, “Why are they still using this chemotherapy drug that makes everybody go deaf?” There has to be something better. And one of the answers is, it's really hard to design studies for cancer drugs, because literally people's lives are at stake. If you test a drug that you don't have a high degree of confidence is going to work, are you condemning a bunch of people to death in a pointless study? These are the sorts of questions that come up, and the study design gets very technical. In some cases, doctor feedback can take years to get to a point where you're ready to do a study. Or you might have spent five years working on a particular study, and while you were doing that some other drug or treatment regime has just blasted right past you.
As someone who's a little bit closer to the frontlines, do you have any sense that we're getting closer to the day where we can get rid of the drugs like cisplatin?
Well, as William Gibson famously said, “The future is already here. It's just not evenly distributed.” Drugs like cisplatin are used because they’re cheap, and they’re effective. The side effects are known, and they’re documented, and, aside from the deafness, they’re not too bad. So I think those drugs will always be at hand for some people. Then there are some people who will go into the doctor's office and say, “I don't care what it costs, throw everything you can at me because I want to live, and I don't care what it costs me.”
But I think we are at the very beginnings of what is going to be a relatively transformative time in cancer treatment. Even in the five years it's been since I went through treatment, the protocols have really shifted. One thing I've seen in the last couple of years of being a patient advocate is that a lot of the treatments that are being tested are really around custom immunotherapies or immunotherapy-based things as opposed to straight chemotherapy. Chemotherapy is a really blunt instrument, right? It's nuking the site from orbit just to be sure. And the doctors are all keenly aware; these are the people who have to deal firsthand with the horrific and difficult side effects of blasting people's bodies with these very dangerous chemicals. So it's not like they're not aware of the stuff.
But the main challenge is that the efficacy is not quite there yet, for some of them, and the cost is still really high. But I think in the next five or ten years, you're going to continue to see that shift with one cancer after another. You will start to see less and less of the kind of chemotherapy that we've been through where you have to go to the facility and have technicians dope you up and then watch to make sure that you don't die while they're flooding you with whatever they're flooding you with.