Opera Singer Battles Cancer after 2 Double Lung Transplants

Podcast Transcript

Kyle: Welcome to The Comeback. I'm your host Kyle Michael Miller. During this episode we're talking with Charity Tillemann-Dick who had two double-lung transplants and her doctor, Cleveland Clinic's Dr. Marie Budev, but first, here's Charity in her own words.

Charity: My name is Charity Sunshine Tillemann-Dick. I'm an author and opera singer. In 2004 I was diagnosed with idiopathic pulmonary arterial hypertension, a disease which carried a two to five year prognosis. I lived my life for five years and then I needed a double-lung transplant which I received here at the Cleveland Clinic in 2009. I received a second double-lung transplant in 2012 and now I am battling cancer. So, the journey continues.

Kyle: Charity, Dr. Budev, thank you so much for joining us today.

Dr. Budev: Thanks for having us.

Charity: Thank you.

Kyle: Charity, aside from going through not one but two double-lung transplants, this past year you've been battling cancer as well.

Charity: I know, I just can't get enough of this place. I want to be at the Cleveland Clinic all the time! 

Kyle: How are you feeling and how has it been going?

Charity: I think it's during the fifth week of chemo and radiation. I'm feeling pretty good. Thank you for asking. Thank you for asking, and the doctors seem happy with how things are progressing.

Kyle: That’s good. I know that the cancer battle hasn't been easy. It's usually never easy on anybody, but you're a fighter which is what I love about Charity’s story is every step of the way you always fight through. How has this past year been for you? 

Charity: You know, I think that the process of transplant is very linear. You know where you are going, you know where you're moving and you know what direction the care is going to proceed. And one of the challenges with cancer is it's a little like whack a mole, you never know what's coming next. And so it's been an adventure. Not one I would recommend going on, but it's been an adventure. 

Kyle: Yeah. What are some of the challenges that you've faced and how have you overcome them?

Charity: Well it’s funny that you asked the challenges I faced because I think that’s one of the biggest challenges is this cancer is on my face, and as a performer, as a singer, as someone who spends a lot of time on stage and in front of camera, I am a vain woman. And even if you're not a vain woman having your identity changed and marred is extremely challenging. But I'm getting used to it. For better or worse. And I find that others are much more willing to accept us than we know. That's been a really lovely thing.

Kyle: Did you worry that some people would treat you differently?

Charity: Yes. And some people do, mostly creepy men so that's okay. 

Kyle: Our society has this fascination with appearance.

Charity: Oh my gosh, we’re obsessed.

Kyle: On social media people are crazy about what they post, how they look. What has this past year, this journey, taught you about appearance and what actually matters in life? 

Charity: Well we live in an insta culture. That's what it all is right now. And I think that as a society we are feeling the weight of that cultural deficit right now because it is all about what's on the surface. And I have found that as I've been forced to sort of delve deeper into myself that I've been able to do that with others around me. And I've made friends and connections that I don't think I ever would have made before with people across the political spectrum, across the, you know ethnic, socioeconomic, go on down the list of all the ways that we think of ourselves as being different from one another. I've been able to connect with people who are different than myself. And that has been a real gift. I wouldn’t ask for the cancer again, but that's been a real gift.

Kyle: When you first came here to Cleveland Clinic you met so many wonderful people including this woman right here.

Charity: Dr. Budev!

Dr. Budev: I was so lucky to meet her.

Kyle: Tell me about your relationship. How did you guys first two meet and how has your friendship grown?

Dr. Budev: It was during an evaluation for lung transplant. And at that time, you know, we had just started talking about the medical part of it. And as I sat in the room with her, well first I should take a step back and say when I walked into the room it wasn't just Charity, but it was also Dennis Kucinich and his beautiful wife there. And I was so taken back that wow, I, I hadn't researched who Charity was, where she came from, anything about her background.

Kyle: She’s sort of a big deal.

Dr. Budev: She’s a huge deal!

Charity: I like to tell myself that. 

Dr. Budev: But you know, it was the same way I would approach any patient. I knew I had a young woman in the room that had pulmonary hypertension that had been referred by an outstanding physician on the east coast that had recommended she start initiating the discussion about transplant. And I walked in. There's this beautiful woman sitting there and so eloquent and so lively. I couldn't believe she was suffering from an end stage lung disease basically. And we talked about her disease. At that point she had just started to get very ill from her pulmonary hypertension, was starting to manifest symptoms that were starting to get in the way of life. And so we were talking about where this path may go. But I wanted to relieve her anxiety. That was the most important thing that you don't need a transplant right now. But this may happen in the future.

So this is what we need to look forward to or start planning for. And she was so receptive to this but there was part of her that was, like you said, a fighter. And she's like ‘Well when the time comes we can talk about it, but right now I'm going to keep going’. Her first question to me was ‘Can I keep singing? What are your thoughts about that?’ And I remember thinking, oh gosh how am I going to tell her this and in a way that's safe for her but also not putting her in jeopardy? So we talked about her singing because she had been told by other physicians you cannot sing anymore. And I thought to tell this poor girl, or this poor woman, whose livelihood was singing that you can't do this anymore on top of carrying around the burden of this illness and facing a transplant. So we talked about this and what it meant and what we should be cautious about and what she could do. And it was a very good dialogue that we had going back and forth and we set some boundaries. Of course did she follow them? Not always.

Kyle: Probably not.

Dr. Budev: No, not always, because that's Charity but then our conversation evolved. It went on to just not what she loved but things about her life, things about being a woman. You know, am I going to have children? Can I have children? If I have a transplant can I have children? What about right now? What should I be doing about this and that? And these were very frank conversations about women's health and this was my previous life was, I was a women's health expert especially dealing with high risk patients. And so we talked about you know, what's going on with your body, your menstrual cycles, children, childbearing and these were conversations she was never able to have before. And that's how it began. I mean I was just in wonder of her because she was like no other patient that I had ever had. And for her, I was like a doctor she had never seen before that was speaking to her very sort of, you know, common way of let's address the things that are really important that are every day.

Charity: I had never seen before. I had never seen before I had probably seen 50 to 75 doctors by that point in my life and that had been over the previous five years. I had thought of myself as a very healthy young person before that and the way that Dr. Budev practiced integrated health, that she was able to bring in all of these aspects of my well-being that other doctors had told me had nothing to do with my pulmonary hypertension, with my pulmonary health. I knew, I experienced, I felt every single month the way that that all of these things impacted my well-being right now, the way she was able to bring those things into the conversation was totally different, totally so very natural.

Dr. Budev: It’s also very natural. This is a normal conversation that everybody should be having with any disease with their doctor. This is important to talk about these daily things that happen in a woman's life.

Charity: Right.

Dr. Budev: And it was very natural and organic for us and I think that describes our relationship.

Charity: Yeah.

Dr. Budev: It's been a very organic relationship and it's based on trust. It's based on a lot of laughs but it's based on trust, you know?

Kyle: How soon did you guys move from patient doctor to really two friends?

Charity: I have to say when Marie walked into the room she was wearing this miniskirt and these above the knee boots and this fabulous sweater and this gorgeous jewelry. And I remember thinking to myself ‘This is a very different doctor than I have had!’ (Laughter) And when she sat down it was like talking to a combination of the best medical professional I'd ever met and a sorority sister. I, I just felt this kinship and this ability to be open with her because I felt like she valued what I had to bring to the conversation. Oftentimes there is very much a parent-child or teacher-student relationship with a patient and that is not what the relationship should look like, that that patient is your most valuable tool in providing good health care. And if what they're saying, if what they're contributing isn’t being seriously considered and listened to, there's no way a doctor can provide the best health care possible.

I think that Dr. Budev instinctively understood that and I think it's what makes her the remarkable doctor that she is and the remarkable person that she is. I don't know if you want her to talk about her story a little bit first, but essentially what happened is we were facing these medical challenges in tandem. But because Dr. Budev was on leave and because the medical staff doesn't disclose their medical staffs’ medical challenges, I didn't know what was happening.

So we were having these experiences in tandem and neither of us were fully aware of what was going on with the other. And I didn't know what was fully going on until after I had a surgery where they actually cut one of my facial nerves so I couldn't really move my face anymore. As a performer that felt like a death sentence. I didn’t know how I would move forward. I didn't know how I would go on, and you know, Dr. Budev talks about how you would hear the click of her heels coming down the hall and this time she didn’t have the click of her heels. But she came and she sat down and she asked me how I was doing and I really, I tried to put on a good face but it was almost impossible in that moment. And I think she saw that and she understood that. She shared her experience and her experience of facial paralysis and her experience of all of these things that I was going through. And as I sat there with her and she took my hand, she told me about all of these, all of these challenges that she was working, still working to overcome. I saw a light. I saw a path forward and I saw a way that we could move forward. And that this saga could lead to some good for others.

Kyle: Dr. Budev, do you think going through that experience for you as a doctor has helped you?

Dr. Budev: It was the most incredible experience, horrible personally, but at the same time as a physician it made me realize what really a true physician is about. About empathy. So as Charity said, we were going through these two different life changing events separately but yet so similar. I remember while I was out on leave she didn't want to intrude. She didn't want to bother me at all. But somehow she knew, she instinctively knew something was really, really wrong. And I got a package one day from her. This was while I was out still with my stroke rehabbing, learning how to walk again. During this time I'd lost all my taste and sense of any taste and smell, even smell but it was slow. The smell was slowly coming back and I got this package from Charity and it was homemade chutneys. I mean, she had no idea this is what I was going through.

And I remember smelling them. I couldn't taste them but I could smell them. Each one smelled so different that I would just open up those jars every day in the morning and it would bring such a smile to my face, and I can't tell you how much that meant. But as we both recovered and went through this my facial paralysis ultimately resolved. And then Charity was going through therapy for her paralysis and for facial movements and to try to enunciate better and improve her oral skills as well. But for both of us we healed each other. She was the catalyst that allowed my healing to begin. When I went into the hospital room and sat down next to her, there were so many doubts that I had whether I could do my job again whether patients would want to follow me and you know we always think of ourselves as doctors with the white coat that guards us against anything it's a barrier to all evils.

We are super human. I had that coat on that day when I sat next to her. The barriers were gone. I knew I wasn't superhuman anymore but I knew I had something that I could share with her and that we could both relate to this and she helped me heal. She opened the door for me to start facing probably the trauma that I had from my illness and my doubts and how I could still continue to do the work that I do but do it in a way that's even more effective. So physicians talk about burnout and all these other issues. I think one thing we have to understand even as medicine has moved along at a rapid pace. Technology has changed us. We're always moving, moving, moving, getting data. The one thing that hasn't changed are patients and their feelings and how they're dealing with their illnesses no matter how severe these are to how complicated they are. They are still dealing with this every day. We need to take a step back, stop the technology for a moment. Just listen as Charity said, listen to your patient.

Their stories are incredible. They are incredible. These are people going through this and showing courage in ways that you would never imagine. Through my illness, what I realized is my patients have more courage than I could ever imagine. This woman sitting next to me boy, she is the epitome of courage. This takes courage every day, to face what she faces is courage. As a transplant patient I think Charity gives herself a lot of credit saying ‘Oh things are linear’. No they're not. There are bumps in this linear acceleration and she said some of the potholes, they haven't been bumps they've been potholes. And every single time she's faced these with such courage such dignity. And you know watching this and being open to it and talking to patients like her just invigorates you. It reenergizes you and it keeps you from burning out. It makes every day fresh. And it also reminds you why you decided to do this. Listen to the patient. It has so much to give us. They have so much they want to share with us.

Kyle: Even when I first talked to Charity, I mean, I've been struck by her story all along but just talking to you even energized me. Like I could face anything that comes my way because you have tackled this with so much joy and grace and you're always, you have that bounce back spirit.

Charity: You know my grandparents were Holocaust survivors so there definitely was a buck up and get over it attitude growing up. If someone's not actively chasing you and trying to kill you then you're doing okay. But I think that patients need empathy too. The work of doctors used to be reserved for saints and angels and musicians… magicians! I can't speak anymore!  (Laughter) Now we expect our doctors to have that kind of omniscience and it's not fair. You know they're human. And allowing our patients, allowing patients to see doctors’ humanity helps us be better members of our medical team, helps us to understand the limitations of medicine and helps us to understand how we can be parts of the solution to our crisis. And so empathy, you know, it's a two way street. And I think that when we experience and show that empathy, that's what allows us to bounce back, that's what allows us to see the possible. And that's what allows us to move forward in productive ways as individuals and as a medical community and patient community.

Kyle: Even though you've been through so much medically in your life you’ve still chosen to find joy in certain things including music which we love about you. You are such a phenomenal singer and musician. Why has that been important to you?

Charity: You need something to live for. For me, music has always been central to what I felt my purpose was, that was only amplified when I was first diagnosed with pulmonary arterial hypertension and then after the transplant it gave me something to work toward and to hope for. And now, it gives me a new vehicle for storytelling and for helping illuminate the humanity of corners of the human race that we don't often think about because they're not our own. And that's, that's the most wonderful thing that we can do.

Kyle: Does it mean something… is it extra special for you when you walk out on the stage, the curtain goes up, you look out and you see the crowd? After going through so much does it give you a little bit extra spark?

Charity: I love being in front of an audience. I'm a middle child of a lot of children. So I had this sort of incessant need to share, and that is whatever I have and since this is something that I do have, I'd been given from the time I was young, I do love going out on stage and sharing with an audience and showing them what we are capable of. The capacity of the human body for recovery, the capacity of the human spirit to overcome. That is a wonderful gift to me just to be reminded of that, everything that I have been able to overcome. And I hope that it performs the same function for the audience.

Kyle: What has your story taught you about perseverance? 

Charity: Oh my gosh, that it doesn't end!  And I think there's this myth of being made. That there is no such thing as being made. We have to be made again every single day we have to make a choice that we are going to take on this day and that we are, we are going to make something of value from it. And I think as soon as we can eliminate the myth of being made we'll get more done because you're never made, it's a continual process of climbing.

Kyle: You just overcome one obstacle and another one and keep fighting and keep fighting.

Charity: Yeah. Isn’t that what your life looks like?

Kyle: Yeah.

Charity: Isn’t that how it feels for both of you?

Kyle: Yes.

Charity: You know, you think when you're done with med school like…

Dr. Budev: It’s life.

Kyle: Fun just begins!

Dr. Budev: This is life.           

Charity: Yeah, so….

Dr. Budev: I guess each obstacle has just made you stronger for the next one.

Charity: I guess that's true for both of us.

Dr. Budev: I don't think you view them as obstacles. I think you just view them as a different day. 

Charity: They are different days. They are different days. But my gosh, sometimes it is hard. Sometimes it is hard and that's okay. That's okay. Pain is a part of life, suffering is a part of life. And so are love and joy and you just have to sort of dig in to whatever experience you're going through. Or I have to dig into whatever experience I'm going through and find the path forward.

Kyle: Have you guys played the game of Go Fish? Charity, you’ve played Go Fish?

Charity:  No. 

Kyle: We're going to play Go Fish right now.

Charity: Is that what that jar is?

Kyle: This is the fish bowl. Yes.

Charity: There’s a pretty jar you guys!

Kyle: So you can dig in there….

Charity: What life lesson have you learned? Come on. There's more than one....like, I could go on all day.

Kyle: If you had to pick one, one life lesson.

Charity: If I had to pick one life lesson. I think there's only one which matters. And you know, Jesus, Gandhi and John Lennon all agreed that all we need at the end of the day is love. All we need is the love of a community, of a parent, of a sibling, of a friend, of a spouse or a lover.  You know it makes all the difference in the world to be seen, to be heard and to be valued by someone in ways that surpass common understanding, and I think that's the most important thing.

Kyle: What about for you, Dr. Budev?

Dr. Budev: You said that so beautifully. 

Kyle: She did say it beautifully!

Dr. Budev: You're absolutely right. You're absolutely right. But I think another life lesson I learned was listening. Everybody has something to teach you. Every single person. I watch Charity like when she'll be with me when we walk into a room, we may not know anybody in that room, but by the time we leave all 200 people in the room they are all Charity’s best friends.

Kyle: They all love her!

Dr. Budev: She knows something about every single person. I'm not kidding. If she's seen them ten years before, she's now seeing them again, she'll know something about that person and she'll bring it up. And so everybody has something to share.  And we just need to remember and open our eyes and ears. 

Kyle: I like that. Why don't you dig in there again? 

Charity: I get to go again? 

Kyle: Yes, you get to keep going.

Charity: This is so fun, it’s like Go Fish where I'm the only person who’s playing! What song has been an anthem for you? So recently I am obsessed with this aria from Adriana Lecouvreur which is called Ecco: Respiro Appena. And it says, ‘You know I'm hardly breathing but with whatever breath I have I am a tool for the creativity and the wonder in the universe’, and I just think that's the most wonderful thing. I just think we should all feel like that all the time.

Dr. Budev: That’s beautiful.

Charity: The fact that it's this transcendent aria just makes it that much better. So I'm obsessed with that.

Kyle: Are you able to give us 30 seconds of it?

Charity: Oh gosh. Okay. I have to move back because I will blow out your speakers. 

Kyle: And we didn't even ask you to warm up, so this is going to be like from zero to sixty!

Charity: It will just be a little bit, but the beginning goes….. (Singing) It's just so beautiful. It goes on and on, so I’m not going to sing the whole thing for you but it is just...it’s so splendid and wonderful and I love it.

Dr. Budev: It is beautiful.

Kyle: Is that how you sound when you sing it too?

Dr. Budev: Oh, absolutely.

Kyle: Just like that?

Dr. Budev: Don’t you sound like that in the shower? 

Kyle:  Yeah. Usually when I warm up, that's what I do for my warm up.

Charity: That’s why we go on the road! We do the warm-ups all the time! All the time.

Dr. Budev: You asked about our friendship.

Kyle: Yeah?

Dr. Budev: And it, again, it just developed. How could you not be friends with this woman? I mean every day is a laugh. Every day is a laugh and a smile. And I think the most incredible thing is every day when I look at the world through her eyes I see something new, something new and I just see kindness. It's incredible. You're an incredible person.

Kyle: Charity, Dr. Budev, thank you so much for sharing your story with us today.

Charity and Dr. Budev: Thank you for having us.

Kyle: Yeah. We've really been looking forward to it and I know our listeners are really going to be inspired by it.

Dr. Budev: Thank you. 

Charity: Thanks.

Kyle: Thank you everybody for listening. You can find additional podcast episodes on our website http://my.clevelandclinic.org/podcasts, on iTunes and Google Play. We'll talk to you next time.