Interview: Judith C. of WELCOME TO THE CANCER CAFE at The Marsh Berkeley Uses Her Own Story to Bring Some Healing to Others

Judith C. is an inveterate health care provider, even if her methods of practice have changed dramatically after being diagnosed several years ago with Multiple Myeloma, an incurable blood cancer. Working as a PT Clinical Specialist in Chronic Pain, Judith never imagined being on the other side of the provider-patient relationship. She now shares her journey in the hilarious and heartbreaking solo show "Welcome to the Cancer Café" at The Marsh Berkeley. Her goal is to share the profound lessons she has learned along the way to educate and hopefully bring some healing to others. Proceeds from each performance will be donated to a local cancer organization chosen by Judith.

I spoke with her recently about how she came to develop the show and the various challenges it presented to her. It was unlike any previous interview I've conducted in that she is not some showbiz hopeful with aspirations that "Cancer Café" will somehow springboard her into the big time. She understands her time on this earth is limited, and really just wants to use what she has learned to help others. In conversation, she is clear-eyed and direct, but also warm and very funny. Our wide-ranging conversation took some unexpected twists and turns into topics like Coney Island carnies and "The 25th Annual Putnam County Spelling Bee." The only struggle I could sense in her was to provide me with answers that were as honest and complete as possible. The following conversation has been edited for length and clarity.

The title "Welcome to the Cancer Café" sounds deliberately cheeky -

Cheeky?

- In that it's both humorous and a maybe a little scary.

When someone gets a devastating diagnosis like cancer you enter the "C World" and you are in a place that some others haven't been, and I was just trying to give it you know a little bit of "Huh, so I'm entering this space." So I thought of a café, and that's where the title comes from.

How would you describe the show, and what do you hope audiences might take away from it?

It's my story of going from being somebody who worked in the medical field to getting a diagnosis of an incurable cancer and going through a stem cell transplant when my mother died. While I was in the hospital at Stanford, she was on the East Coast in Brooklyn dying. We were very close so there's just a lot that happened in those years. And I would describe this performance as a journey that you can take that includes enough humor to bring you along into the reality of what it's like to have to make decisions and live through the treatment experiences, of trying to get more time with cancer.

My goal is that the piece speaks to different audiences, of course that people with cancer find ways to identify. "Oh, yeah, I remember when my best friend told me to eat pomegranates every day when I said I had cancer." - things like that. My partner happens to be a palliative care chaplain rabbi so we're both in this world. We actually both worked for Kaiser Oakland at the time so there's a lot of information about ideas around caregiving that are not [generally] thought of. Mostly, how we use that word and what that means, and a very strong message and influence to people - in particular oncologists, palliative care doctors and nurses, social workers, chaplains in the field - to bring them to a place where they remember a little bit more to see the people across their table as fully human. I worked in a pain management clinic where people's lives were devastated by pain issues, and I remember we'd sit around in team meetings and there's always that level of "there but for the grace of God go I" right? It's how we look at devastating news - we separate. Which can be extremely helpful, but it's also a way to numb ourselves, and I've always had this ability to really look at the full person. It's not that they have a broken arm; it's that this is a person who, you know, plays the violin and works as a cashier and now what's going on with her life? So there's a way of looking bigger at things and that's a lot of what I show. There's a local artist who said to me, "You know after seeing your show, just making decisions in my life is different." So I think how we come to decisions is illuminated. And then there's the general audience. You know, people who may or may not have somebody in their lives, or have a cancer diagnosis, and wanting to reach out because there's a way.

I remember when I first performed this, I used to thank the audience afterwards. "Thank you for coming to a play about cancer!" [laughs] Luckily, I got to work with the great maestro David Ford, who really honed my skills of having enough humor to shine light on challenging places. So people laugh and cry, and it often stimulates discussions after. Though it is my story, there is a part of me that's an educator, and I want to continue to do that. A lot of my motivation is to perform this for medical students, and oncology grand rounds. This will probably be my last public performances unless something else happens, because I have limited energy. I'm still in treatment and treatment changes. So it's not a theater piece like other sort of burgeoning young people, not young in age, but young at the field. You know, yes I learned a lot about writing for a solo performance, and acting, my skills have improved tremendously and it's a quality show. I'm sort of a natural at acting. My mom's side of the family are all carnies from Coney Island.

Did you have any prior experience as a performer?

Well, I juggled on the streets of New York as a clown when I was like 18. Never earned enough for rent, but enough for meals for the day. I was also in a New York feminist theater troupe for a year in 1974, but that was it for acting. As a Feldenkrais practitioner, you lead people through movements and I also was a clinical specialist in pain management. I had a number of online physical therapy courses, so I had to be in front of a video camera, and in front of groups of people to present. So I had that behind me, and it all helped.

Do you remember when the play "The [25th Annual Putnam County] Spelling Bee" was here in San Francisco?

Yes!

So we got there early, and they do that thing where they ask you if you want to be in the performance you need to fill this form out. Well, I hadn't even known that, but I filled it out, and they give you a one or two-minute interview before the show to pick the people. They just ask you really quick questions like "Where were you born?" I said "Well, I was born in Brooklyn and my mom is from Coney Island." Then they pick five people from that. One woman had a funny sweater on, and one guy was kind of a nerd, and they picked me. I have to say, that was my premiere performance [as an actor] - at "Spelling Bee" in San Francisco. I think that was the highlight of my life, I was SO happy after that show. [laughs] It was years ago and I was a physical therapist, but I should have known - that was it for me, I was hooked!

What prompted you to turn your own experience into a performance piece, instead of, say, a journal article or even a TED Talk?

There was a lot of shock for me in that initial diagnosis and somebody just happened to send me an email about Armand Volkas who does therapeutic drama work. I contacted them and I was in pretty strong treatment. I said "I have no idea if I can do this." I had been in two support groups, and that had been, of course, interesting for me, but everybody in the room had cancer, right? This was a theater performance class to tell your story for healing and I was the only person with cancer. So I did that course and realized it really helped me in a way that was better than a lot of the other things I'd tried. You know, I'd been to support groups, cancer coaches, discussions, those kind of things, but this was different. I did the last performance at the end of the class and many of my friends came cause they were all in shock, too. It was much more of an emotional piece, it involved my childhood, you know, and things like that. It was very vulnerable, and like I say I'm a natural so it was good, it was well-written. I also think by being a therapist, somebody who works on people in one-hour slots, I understood time. I don't allow my solo piece to go over an hour because my attention for solo pieces is about an hour, so I've stuck to that.

What was the Marsh's role in helping you develop "Cancer Café?"

After that, I was in more treatment, different things, but before the stem cell transplant, someone told me about a man named David Ford who does things at The Marsh. I couldn't make it to San Francisco because of the fatigue and the immune suppression and stuff, but he was doing the Berkeley Marsh on Sundays and I joined his class. I had been journaling and I think I could have written a book, but this is what got me - when you write for solo performance, what could be a chapter in a book is maybe only three lines, and in that you have to get people to know like where you are, what color the walls are, what the air smells like, what you're feeling and what's happening without you saying it. I just felt like that was getting deeper and deeper into this honesty place, shedding off layers. David had me at The Marsh Rising that November and he gave me a comment, which was simple, about changing the ending and I sat with it for five months. Then one day I was taking a walk on the beach and it was like finally I understood what he was saying. You know, honesty does not come easily, I'm sorry to say. What I loved about it was that it made me find the honesty in what I was going through.

Then I had a stem cell transplant. First they kill off your immune system, then they give you back some of your immune cells after they kill as much cancer as they can, and so then for six months I'm building up immunity again. Right at the six-month mark, I contacted David and said "I'm sort of getting back into society" and of course David knew the situation. I was writing about the transplant and David was like "But your mother died." And I was like "Yeah, but the transplant was a really big thing." And it was obvious to him that I wasn't putting the things together, so this writing has brought the pieces together that were more subconscious for me. And the other thing about this that's really big for me is that - you know how people do crossword puzzles when they're getting older to keep their minds sharp? So I have like, I won't remember your name, I have a memory for bodies and faces because that's how I work, but I have a terrible memory. So memorizing for performances was a huge feat for me, and has kept my focus, my mental agility just really tuned in a way. It's mental therapy.

It's beautiful work for me and to get to a deeper level, it's just like I needed some direction. I'm not working as a physical therapist right now, and when your work is gone, your identity is gone. This gave me an identity and a place to put my energy when I had energy, and it's just turned into the most useful thing. I mean, people say "What did you get from cancer?" and I'm always like "Nothing! Don't even got there!" [laughs] But what I got is that I am just so happy and so privileged to have been able to do this and to produce this show which of course took four and a half years in the making. I've learned so much and all my directors have been phenomenally lovely. I've had like four different directors, and even my daughter was one of my directors. She's a former Flamenco dancer and she helped me a lot.

Since you're up there onstage telling your own story, it's not like you can keep a safe distance from the material. What's the most challenging part for you actually doing the show?

I performed at the bone marrow transplant conference across the country two years in a row so my audience was primarily people who've actually had a transplant, possibly different cancers, some of them incurable, and I've had a number of people come up and go "You know, I try to forget I have cancer. Why would you do this?" [laughs] but they [also] say "Thank you, it was wonderful." I notice that there is at least one place in every show where the emotion, the vulnerability comes forth. It can be in different places, and it becomes this way of connecting with the audience that's so beautiful, and I can feel the energy going back and forth. At the end of the show, a woman came up to me in Santa Cruz and said, "I cared for my mother and there was a lot of issues between us. I had all this guilt and I just feel resolved after your show." and she broke down crying. I often have things like that happen so there's an emotional give and take that I get from performing the show.

The other piece that's a challenge for me is that the end needs to keep changing. So this show is different [from previous versions]. My cancer's coming back, so the end is different. I have to be present in that, and it is a challenge and it is emotional when I rehearse. I think it's healing. It's not not healing, for sure, there's no destruction in it. I think it's the sharing that emotional truth with people that's given me a lot of sense of connection and resilience. I think, there's a way that performing gives me resilience.

One aspect of the show is your journey from health care provider to patient. What did you find particularly surprising when the tables were turned?

The biggest thing that happened was that I was having feelings in the oncologist's office, and it didn't feel OK. I pulled my chart to go get a second opinion at one point and saw that my first treatment oncologist wrote that I had a history of depression, which I happen not to have had. I assume that he wrote that because I was crying in his office. That brought up a tremendous amount of questioning myself and the power imbalance, and shame. So I'm in shock from a cancer diagnosis and then I wonder if I'm responding appropriately. I didn't understand the job of an oncologist. I worked in a multi-disciplinary clinic so I had worked with orthopedics, neurologists, and I had contact with all my patients' doctors and surgeons. They're collegial, it's never been an issue, I'm out in that world, I know how to read research, best practices.

But I got to the oncologist's office and I just thought I broke down and I didn't understand their job. I thought "I have incurable cancer so they're not... are they gonna save me? What happens now?" And also I knew what it meant to be a really present provider. Not to toot my horn, but that is one of my skills, so I also knew when the providers were off, and that was hard for me and my partner. When I got diagnosed, no one gave me information about where to get emotional support, they didn't even mention the myeloma support group, in fact one doctor told me not to go, because he thought it's mostly people who were doing poorly, probably complaining, it'll bring you down. He'd never gone to the local chapter - our chapter happens to be very information sharing and bringing people up in what's available.

That reminds me of Charlie Garfield who started the Shanti Project because he was working on the cancer ward at UCSF and the oncologists couldn't deal with the patients' feelings. That was almost 50 years ago now, so I'd hoped things would have gotten better.

I don't think it's gotten much better, some oncologists of course have gotten better, but the hope is in palliative care. Palliative care doctors and nurses are trained for this level. Of course, most people think it has to do with hospice, or at least end of life, even myself. We were pushing the diagnosing oncologist on where can we get help, and she said "you can talk to palliative care." I was like "Wait a second, I just asked you if I was dying and you clearly said 'no.' I'm very confused here!" [laughs] I went to see this palliative care doctor and it was like sitting in the perfect air temperature. There was no judgment, she understood what I was going through, knew what the cancer world was about, and knew my diagnosis somewhat. We just talked, and I realized I didn't need her. I wasn't in the dying process, but now I have a connection with somebody. She was the first person that I didn't have to explain or do anything, and it was incredible. And I even asked her at that time, because the right to die act had been passed, if I had to make that choice at some point, would she be one of my two doctors and she said 'yes.' So if the role of palliative care were more available, that would be my thing.

And the other thing I realized, and I don't know that oncologists would agree with this, is I would like to call the oncologists chemotherapists. I think their title is wrong. Really what they do is treatment, and I came to an insight that may or may not be true, but I think it is and it was sort of an "aha moment." I think oncologists understand that the treatments they are offering are extremely challenging and there's a level, probably unconscious, where if they are meeting with somebody who seems very sturdy, then it must be easier for them to give the treatments. I think it's just by nature harder if they think there's a way you're not quote-unquote a "full fighter." I think I came on to something, there might be a piece of truth in that. And that came from writing, right? I asked myself "What is the oncologist thinking?" And also, this is a quality show; I don't just make fun of people. The oncologists are like caring but missing the mark, but then getting the mark. You have to have sympathy even for the challenging people in your life.

My next question is trying to get at that, but I don't know quite how to ask it. Have you found that even well-meaning people say or do things that drive you a little bit crazy?

Yeah, people say all kinds of crazy things. What did I particularly find hard? Two things - How to manage people who wanted to hug me. That was hard, culturally unbelievable. I've come up with all kinds of tricks, my partner even wrote a piece on her medical blog. We've had long discussions with people, you know, I'm on medication that keeps my white blood count extremely low so hugging is [unsafe for me]. Then people being offended and what to say to them. It's such a quick thing. People see you and they want to hug you because they've heard. I mean hugging is - I could go on for an hour about hugging!

And the other thing was the praying for me. People just say, "I pray for you every night." There's a scene in my performance about that, but I will tell you an interesting thing. One of my friends is a young African American woman who's big in her church and she came to see one of my performances early on. I called her after and I said "Were you offended by the scene where I talk about my discomfort with people wanting to pray for me?" In the scene, I ask "What are they praying for?" and I give options. She just gave me this beautiful line, she said "Not at all Judith. I pray for people all the time and I realize that I have never asked them what it is they want me to pray for them."

What are your plans for the show after The Marsh run?

It's all about connections, that's how privilege and race work in this country. I'm noticing that the Marsh run is giving me some credentials and am hoping that will lead to possibilities of getting it to nurses and grand rounds and things like that. At this point, I just put out as much energy as I can and hope the connections happen.

"Welcome to the Cancer Café" runs Sunday afternoons March 8, 15 & 22 at The Marsh Berkeley, 2120 Allston Way, Berkeley, CA. For information or to order tickets visit themarsh.org or call (415) 282-3055 (Monday through Friday, 1pm-4pm).

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