Rebuilding a Life After Facial Cancer: A Conversation with Kathleen Watt

myFace, myStory

On this month's myFace, myStory podcast episode, host Dina Zuckerberg is joined by Kathleen Watt, an opera singer on some of the biggest stages whose life changed when she was diagnosed with bone cancer in her face. She will speak about her memoir, REARRANGED where she writes about coming face-to-face with mortality, disfigurement, having her face reconstructed, and the meaning and uses of beauty. REARRANGED is a tale of letting go to hold on, of putting old pieces to new uses—and of the unlikely arrangements that make it all work out.​

- [Narrator] Welcome to "myFace myStory, voices from the craniofacial community" with your host Dina Zuckerberg.

- Hello and welcome to "myFace myStory, voices from the craniofacial community." Whether you're watching on YouTube or listening on Apple Podcasts, click Subscribe now, so that you'll never miss a future episode. And if you're a fan of "myFace myStory," rate and review the program on Apple Podcasts, so that we can get our message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace myStory" is about people like us being seen and heard, about sharing stories within the cranial facial community and with others. Today I will be joined by Kathleen Watt. Kathleen Watt sang principal roles with various opera companies and in the extra chorus of New York's Metropolitan Opera, before her singing career was severely ended by osteogenic sarcoma, bone cancer in her face. She recently wrote her memoir "Rearranged," which tells of leaving the operatic stage for a starring role opposite the Big C. Bone cancer in her cheek, ended her career and brought her face to face with mortality, disfigurement, the meaning and uses of beauty, and a lot of leftover pieces. "Rearranged" is a story about letting go to hold on, of putting old pieces to new uses, and of the unlikely arrangements that make it all work out. Since retiring from performing, she has written frequently on performing arts and cultural issues, including features, profiles, and essays. As a writer and cancer survivor, Kathleen has collaborated with doctors and artists on a range of projects, including an appearance on a BBC Four series about facial disfigurement. Formerly an assistant art director in publishing, Kathleen attended Rhode Island School of Design, Brown University, and Brigham Young University, earning a double BFA in art and music, with postgraduate studies in opera performance at Boston University. Kathleen now writes from a windswept hay farm in the Catskill Mountains of New York, where she resides with her partner, 10 chickens, three dogs, and on occasion her two grown stepchildren. Welcome, Kathleen. I really look forward to our conversation.

- Thank you, Dina. It's a delight to be here.

- Yes. So why and how did you become an opera singer?

- Well, my mother was a classically trained singer, so I grew up with the sound of that kind of a voice in my ear early on. But I personally, I took a long way around. I went to several different schools, as you just recounted. I got a BFA in art and a minor in voice, but I chose to prioritize singing, because it has, you know, supposedly it has an expiration date. And also with serious singing, I had to come to the grudging understanding that the only way to get paid was to get hired by a company, so that meant opera. But once I got into it, I was really hooked on grand opera, One of the things I liked about it, besides the comradery of other musicians and the music and the lights and the costumes and everything, was the way that operatic singing is almost like an athletic activity. It's full-bodied, muscular and musical and lyrical all at the same time. So I really enjoyed all of that, so I was hooked. So I had to get a job.

- Right, right. I fell in love, the first opera I ever saw was "Madam Butterfly," and I fell in love with the opera after that.

- Oh, that's one that will make you fall in love.

- Yes. So take us back to the day when you learned that you had bone cancer in the face. What was going through your mind?

- Well, my tumor was identified by my dentist, as often happens with head and neck cancers or serious head and neck conditions. I asked my partner, Evie, to help me identify a bump in the gum line over my back teeth, and we agreed that I should ask my dentist about it. But he sent me to an endodontist who thought it might be a condition requiring a root canal, and then he sent me to an oral surgeon, who thought it might deserve a biopsy. So by March, I had my diagnosis, and I first heard the news on my answering machine. It's not something you're ever really prepared for, even if you've seen it in others and you know it might be coming. We took one step at a time as it was revealed to us, what else can you do? And I had surgery in April, which coincidentally I had my surgery in April on the very same day that I was scheduled to audition with the Met for my full-time position. So it was very karmic in that way.

- So as you said, you were an opera singer and then you auditioned for roles. How did preparing for your surgery, especially your first surgery, how have that experience of auditioning for the offer, how did that experience help you in your medical journey, if it did indeed, helped you?

- Yeah, that's a great question. And it came upon me, the answer to your question came upon me as I was writing. As an opera singer, of course, my diagnosis was cataclysmic. It put my career plans in jeopardy, and my instrument, that is my body, was at risk. And it was my whole reason for being. At the moment I was in mid-career, the diagnosis came right in the middle of the operatic season. So I was more or less in performer mode as we took on the cancer. And I remained, so actually, for a couple of years. And my very first questions when I heard about the diagnosis, or when I first got my tests and I knew what was in the future for me, was could I make it back to the season? Could I make it back and have enough time to practice and be ready for the season? I would miss the second half of the current season, but could I get back for this for the next season, you know? So I was in performer mode, and in retrospect, as I was writing, I realized that I kind of, I prepped for my role as a patient in much the same way that I might prepare to sing a character role. In fact, right from the outset, because I learned of my hiring at the Met by way of an answering machine message, which the maestro told me that I had missed my first rehearsal, which nobody told me about, and I would be fired if I missed the next one.

- Right.

- Similarly, I learned about my cancer on an answering, a telephone answering machine message, it's so ancient, I can't even remember how to say it. But this time from my oral specialist, and he was saying it never was a dental problem, that was a waste of time, it's cancer, and I might die if I don't find a head and neck surgeon. So, they were two very, you know, distinctly different embarkations on a big adventure, so.

- Right, right.

- And then I basically took on the responsibility of the role I had to play as a patient and learned everything I could about it, and attended coachings, consultations, and then I showed up for the downbeat. And then once the curtain is up, just as in a performance, there's no way to go but forward.

- Right, right.

- Go on.

- That's what you had to do, right? You had to go forward through the whole thing.

- Yeah, yeah. And in retrospect, I really think a lot of my training as a singer gave me resources that I would come to rely upon. And it's not unique to singing, but anybody who becomes a, I think anybody who becomes a hostage of the hospital situation in, you know, whatever their situation is, brings to it all of their resources. I mean, I had physical fitness and patience, I think, as a long time student of classical voice, but whatever it is, you have a lot of the resources within you to meet and sustain the ordeal that seems like something completely novel. Until you recognize that you bring your whole self to it, and very often you're more equal to it than you expect.

- Right. So what or who gave you strength to get through, I believe it's 32 surgeries, to get to where you are today?

- Yeah, 32 with general anesthesia, not counting the little ones.

- Okay.

- Well, I have to credit my support system. Of course, there's nothing more powerful or sustaining than a strong support system. I had my siblings, and my primary caregiver was my partner, Evie, who was absolutely essential. And she was never able to breathe easy until the whole thing was over. And we never knew how long it was going to be. So we were kind of in an isometric holding pattern for a decade. And she as a mate, and the role she played, the role of the caregiver, are actually major characters in the book. But they all showed up, my siblings and my partner, and because they kept showing up, I felt I ought to make it worth their while, I guess. It gave me an incentive to keep showing up. If this was worth it to them, I better make it worth it for them to come. And I will add to a certain extent that we entertained each other. I mean, nothing is more important than a committed support system. But I will also add that we should never underestimate the value of humor.

- Absolutely.

- And there's science behind that now too. As I understand it, nothing releases the brain's healing hormones, the endorphins, the dopamine, that everybody's always trying to get from somewhere, there's nothing that releases it like a good joke. Cracking good laugh. And that's something you can do for yourself. Have you found that?

- I love humor and that is something, yes. And I also think that's what I loved when I was reading your memoir about how you talk about those moments that like seems so crazy or hard, and then you're talking about the humor that you brought into that. And I love that. And also, when you're talking about caregivers or having that support, I always say like, I remember my mother being there for every surgery I had, and I talk to parents today and they talk about how they worry so much, and I say, "You know what? Your child's gonna remember that you advocated hard for them." And I still remember that. And I think that's, I'm sure that's what they had to advocate I'm sure all the time for you as well, especially because you couldn't communicate so much.

- Yeah, well, that's a perfect example of your mother showing up, of how your life is not on hold. While you're there, you're having your life. So during that time, as difficult as it may have been, and you would not choose it or we should on anyone, but in that time, you're building this relationship with your mom, and yourself, in all kinds of ways. I do think that it's self-defeating to think of serious illness as you know, something that you have to just get through or you have to put everything on hold, and then pick up again after it's over. I think you miss your opportunity there.

- Right. I agree. So for me, I was born with my facial differences. It's what I've always known. I imagine that experience would be so different for you having your face reconstructed and seeing how it changed your appearance. Can you talk about that?

- Well, you know, Dina, I'm pretty much okay about it now, but I've been watching you and others, you know, in your field for quite a while. And I have to admit, I don't wear it as smoothly as you do. I just, you know, I used to avoid mirrors, and you know, picture windows and overturned spoons, you know, I just, so at least that part has improved. But I admit, you know, I shied away from Zooms or FaceTime or Skype or anything, even during the pandemic. And if it weren't for this book forcing me to get out there, I, you know, I've had to, you know, make my peace with it. And even now, you can see, I use my strategies, you know? Trying to look casual as I hold up the bad side of my face, you know?

- Listen, I don't think anybody loves to see themselves on camera, even the most beautiful people,

- Exactly.

- I'm not sure love it either, and can find the flaws. So, yeah. And I still don't like watching myself, so yeah.

- Yeah, yeah. Truth to tell, I was worried about it before I had my, you know, acquired deformity. I think it's quite different, as you say, in the fact that I think maybe it's, you know, it's not something I've been able to develop into, as you have. I mean, I'm a lot older than you are, so probably I've had as long to develop into my deformity as you had from birth. But, you know, it's silly, because it's, as you say, it's not silly, but it's an obstacle that I place in my own way, I can only speak for myself, that I need not, because the real cost, and nevermind what it indicates about me, is inside. You know, you have much more self-assurance than I do, and I still have to work on it. I'm not as free as you are, you know, I-

- Well, it took me a lot of years to get to this point. This did not, I promise you, did not happen overnight. And if you told me 15 years ago that I would be hosting a podcast or going into school, I would've said you were absolutely crazy. That would never happen. And so I guess you never know what life has in store for you. And it definitely, I mean, I'm sure doing this is making you grow in ways that you never thought that you could, probably five years ago or 10 years ago, so.

- Never, never. Never would've imagined it, never could have planned it. So, keep working at it and I can't say that I regret any of it, you know?

- Right. To our audience, I hope that you're enjoying this episode of "myFace myStory." Whether it's your first time joining us, or you've been with us since the beginning, make sure you've subscribed to our YouTube channel and Apple Podcasts channels and sign up for our mailing list at myface.org/mystory. So let's talk about your book. Why did you decide to write your memoir, "Rearranged?"

- Well, why did I write it? I wanted to write, that's why I did. And to be honest, Dina, I really never, I really, I took field notes along the way and I had a lot of them, because my support team saved all my notes, including from my scratch pad when I was in ICU psychosis and couldn't talk. So I had my notes, but I never really wanted to write a cancer story, even a survivor's story. I just didn't want to do that. But I wanted to do more writing. And, you know, cancer was the biggest, most dramatic thing that had ever happened to me. So, I decided to stitch together all those notes that I took. And I've found that it's not, people ask me, you know, what was it like giving up singing. It has not been an empty crater, you know, it's been filled by, I have thought of it even as the persistent joy of singing, albeit with a different voice. So that's one reason why I wrote the book, is to use my new voice. And I think the byproduct of a very selfish, you know, that's kind of, I think of it as sort of a, you know, well, an artist always wants to perform, and maybe I have an artist's spirit, I don't know, but it seems a little self-seeking to me to just, you know, use it because I wanna write about something, so I write about myself. But it's been gratifying to me having done it, to see that just having stuck it out can be an inspiration or an encouragement, and in some ways living proof, you know, to anyone facing this or any other battle of a lifetime. You know, whatever form it may take, you know, yours or mine, or an internal kind of disorder or a challenge of any kind, can be surmounted, putting one foot in front of the other, and believing in the best, I think.

- So, was it cathartic?

- That's why I wrote the book.

- So was it cathartic for you to write the book?

- You know, it was more than I expected. More than I expected, because from a writing perspective, it was a joy, I felt, and when I was unable to return to singing, a friend, became a dear friend, gave me an opportunity to begin writing for the performing arts. So I had that niche, and I had a start at it, and I'd had some practice with it. And this was a big, rich project, but it had been more than 20 years. And I'd written all these notes, and I was extremely familiar with the story. I thought I, you know, I thought I'd moved on. Well, I had, I've moved on to a completely different life. And honestly, I was very surprised to see the flood of feelings that I still had, locked away somewhere. I guess I must have, you know, triaged them until I, you know, until I could get to them, I guess. And then with each chapter, there were the feelings again. And I had a good writing situation at that time. So some days I just let it all fly, you know? And sometimes I just did that for the rest of the day. But, you know, and this is another link to singing, with young singers, especially, you know, trying so hard and so devoted to getting a character and the music, and embodying it and doing justice to it, a young singer will often, you know, especially in coachings or in a voice lesson, begin to weep, because they're so moved. And as a young singer, you know, the same thing happened to me, especially with characters that I absolutely loved and couldn't wait to get working on. I would go in and I would weep, and I would kind of, you know, in the back of my mind, I'm sure I was kind of hoping to be approved for that, you know, for being so deeply moved. And all I heard was, you know, get over your emotion. Just get it all out and then get over it, because you are not able to deliver to anyone else the opportunity to be moved by the material in the way that you were. People want to come and be moved by your performance, they don't wanna see you be moved, you know, all over the stage. So in some ways it was, I'm not gonna say that it doesn't bother me anymore, I mean, there's certainly fraught, but you know, when I go over the details of things, it has been a great relief to have it in one piece, like you know, an orb of some kind that's full of the story, and I can put it over here and look at it and observe it, but it doesn't affect me, you know, to emotional breakdown as it did before. And I feel that I've completely lived that and completely left it there to live the rest of my life. So yes, I guess that's the definition of cathartic.

- Okay, okay. So we know the techniques are so different today. What advice would you give someone today in making the choices about their care?

- Oh, about if they had what I had?

- Yes. Or, you know, going through all these reconstructive surgeries and is it-

- Yeah. The advice I would give, is to inform yourself as much as possible. Try to understand what's in store for you. Prepare yourself with specific questions about procedures. These are things that you can do, and include questions about whatever you may have heard somewhere or seen on Google. Doctors appreciate this. They wanna know where you're coming from. The best doctors want to hear what you need to know as a patient to take responsibility, and in the best way that you can to be a partner in this project, and make their elite, you know, sophisticated brainiac skills reach the greatest outcome. So they need to know, even if they don't admit it, but many of the younger generation of doctors coming along are very much more open to that. As you prepare yourself, don't forget to include the things that scare you. Let them know what scares you, and what things you're gonna need help with. And then after you've prepared as much as you can with questions about what's going to happen to you, and with the things that you're able to articulate about yourself, that you can offer to them to add to their toolbox, then you have to kind of audition a couple of teams with these questions and how they, you're not ever gonna be able to judge the quality of their intellect or, you know, the comparative professional preparedness, you're not gonna know those things, 'cause it's a completely different thing, and it's not your specialty. But as a patient, you'll know how you feel about the way they answer your questions. If the only thing you can do is evaluate their character and kindness, is it important to them to listen to you? Because it's gonna be a long road, the consultation, you know, the consult is just a couple of hours on the front end. But it is important to know that you're joining a team that need your input, whether they know it or not. And you need to be a willing patient, which you will be if you trust them. And so you can tell from the way that they answer your questions, whether you're important in their mind to the whole enterprise of your care. So, communication is crucial, and trust are the most important things, I think, that fall to a patient at the beginning of their treatment.

- I'm always careful to, you know, people say, "Oh, who do you recommend, or who do you like?" I think it's such a personal decision who you decide to go with, what medical team you decide to go to, because one person may have a great experience and another not so great experience. And it's, I agree, it's who you trust in the end, who feels right for you, to get through that process, because if it doesn't, I don't think it's gonna work well. So I think trust is so key to it. And I think also for, I think so many in the cranial facial community, and I think I'm sure you would probably agree, is that having coordinated care, you know, having a team that works together, is probably very valuable as well.

- Oh, coordinated care is crucial, because at the top of the team, if you take two or three consults, I think that's enough to demonstrate that at the top the elite physicians are pretty equal to each other. They're all doing miraculous things, but the caliber of the care in the steps after the surgery or you know, the top entrance levels of the serious illness after the elite surgeon has finished, these can make or break their work. And there's so much else going on with the patient, other than just that first level.

- Yeah. And it's not just the surgery, it's also in some ways the psychosocial, what's going on, the mental health too, I think is probably key to the whole-

- Absolutely, the psychosocial with... And then you've got, you know, speech pathologists and movement coaches, and you have an interaction with them, and they have an interaction with your primary surgeon, and all of that has to be smooth, in order for, you know, the miracle to be sustained. And in my situation, I had a very, the surgery that they did on me is regularly done now, but it was kind of out on the frontier at that time. But it was doable and it had good numbers behind it. And in the first instance, it was successful on me. And I would choose it again, it had a 97% success rate. And that was a good number for me. And the outcome when it was successful was one that I wanted. But I had a cataclysmic complication.

- Yes, I've read that.

- And if I had not had a smoothly running team after that, even though a miracle had saved me once, you know, there are many times when my goose could have been cooked, and over the period of time that I had to recover from, you know, once all the miracle was accomplished, then I had to recover and grow into that, you know, different person, different body, different looks. I mean, my outcome was good. But at any point, if they had not had equally brilliant and sensitive adjuncts at the other levels, the stepwise levels into wellness, you know, I won't say they're below them, they have different skills. And the patient is equally dependent upon those. So, coordinated teams are absolutely crucial. And they were kind of new at the time. The hospital that I went to, it had been built like maybe five years prior and it had a revolutionary edition called the family waiting room. I mean.

- Right, right.

- I mean to have such a thing, such a common, obvious, logical thing be considered a revolutionary contribution is unbelievable. But yes. And teams are getting smoother all the time.

- Absolutely. So, knowing what you know now, what is one thing you would tell your younger self? What is that one thing you would say?

- Well, nobody could ever tell my younger self anything, to tell you the truth.

- There you go.

- So I wouldn't wanna have to.

- Okay. So who do you see when you look in the mirror today?

- I see a striver. You know, I see my whiskers, you know.

- Right.

- I miss the face that I used to have, you know, but it's not, your priorities change, and in some respect the rearrangement of my priorities is something that happens with, you know, age or maturation anyway. It just is not worth the trouble that it would take to, you know, to make up. But in the absence of, you know, wearing makeup or striving for a certain level of, you know, socially definable attractiveness, it just all seems so silly to me.

- We could have a whole another conversation about beauty. And I mean, that's a whole another conversation, but-

- It is, and we should have it sometime, Dina.

- Exactly, we should. So where can people go to find out more and buy your book? Do you have a website?

- Oh, yes, I do. And it's my name, www.kathleenwatt.com. And it has some of my other writing there too. But it's most, you know, it's kind of flooded now with information about the book. Also, the book has its own story. There's a lot of, you know, people pull different things from it, besides just the medical, the arc of the medical story. But at the end, I want to mention that I intentionally added an afterword to describe how what happened to me is not going to happen to anyone else who has craniofacial osteogenic sarcoma in 2024. Not because the oncology part of it, unfortunately, is not very much advanced, but the way they do it. And the technology and the techniques that are, you know, in current medicine that are brought to bear with the reconstruction phase, which is the thing that altered my life. Well, it's the thing that used up a decade, not the cancer, but the, you know. And that aspect has changed dramatically. And so I would direct people who are facing this particular challenge to heed that part as well, because, you know, so as not to be completely daunted by the medical part of the book. But that's where it is. And it's also available on Amazon and barnesandnoble.com and bookshop.org. And you can ask your local bookstore to order it.

- Okay. Well I read it on my Kindle, so.

- Oh, you did? Good.

- I did, yes. Thank you. So Kathleen, thank you for sharing your journey with us and your story. You have gone through all of those surgeries and medical journey with self, you could have gone through all those surgeries and medical journey with self pity, instead, you did it with incredible strength, support, and what I love is your humor. So thank you.

- It was my great pleasure and getting to know you Dina a little bit as I have. Dina showed up at my launch party, so that was great.

- Yes, definitely.

- And I just, I'm in awe of what you do.

- Thank you.

- So onward and upwards. Let's support each other.

- Absolutely. Yes, for sure. Thank you.

- Thank you, Dina.

- Kathleen is an inspiration to me and everyone she meets. Everyone has a story. And I'm hopeful that by sharing stories like hers, we can create a kinder world. For more than 70 years, myFace has been dedicated to changing the faces and transforming the lives of children and adults with facial differences by providing access to holistic, comprehensive care, education, resources, and support that pave the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the myFace Support Groups, so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to "myFace myStory" on your favorite podcast app, and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of "myFace myStory." Remember, it takes courage to share your story, so be brave and speak out.

- Hi, I'm Stephanie Paul, the executive director of myFace. myFace is a non-profit organization dedicated to changing the faces and transforming the lives of children and adults with facial differences. We do this through various programs and events, such as the "Transforming Lives" educational webinar series, Races for Faces, the Wonder Project, and the groundbreaking "myFace myStory" conversational series. You can learn more about all of these on our website at myface.org. If you enjoyed today's program, we hope you'll consider making a donation to help keep programs like this possible, as well as to further the support of the craniofacial community. Thank you.