Lessons from a Stage 4 Cancer Survivor: A Conversation with Mary Elizabeth Williams

Dr. Diane Reidy-Lagunes:

Every patient has a remarkable story to tell. Today, we have a rare opportunity to hear from journalist, doctoral student of medical humanities, and self-described professional extrovert, Mary Elizabeth Williams. She has explored and described every corner of her own cancer experience: The good, the bad, the why is this happening to me? I bet you will hear parts of your story today. She's one of a kind and I can't wait. Hello. I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send your questions, please visit us at mskcc.org/podcast. Mary Elizabeth Williams has a powerful story to tell. Diagnosed with stage four melanoma which spread to her lungs, she enrolls in one of the first phase-one immunotherapy trials. That is a study based on an idea never before tested in humans. And it worked! It cured her stage four disease. Had she been diagnosed one or two years earlier, perhaps she wouldn't be with us today. Hence the title of her book, "A Series of Catastrophes and Miracles," which takes us along on her up and down journey through stage four melanoma. She's a regular writer for Salon, she's published everywhere, and her story was recently featured on the TV version of Modern Love. Mary Elizabeth, I've listened, read and watched you and I can not thank you enough for being part of the show today. Welcome.

Mary Elizabeth Williams:

Thank you so much for having me. It's a pleasure to be here in the place where it all began.

Dr. Diane Reidy-Lagunes:

Absolutely. And I will say you probably know, but your oncologist, Dr. Jedd Wolchok, was actually on a prior episode with one of our patients, Grace, talking about actually the role of immunotherapy in adrenal cancer. So we're just so thrilled to have you here today.

Mary Elizabeth Williams:

It's a pleasure and Jedd the best. I love hearing him talk

Dr. Diane Reidy-Lagunes:

So on August 10th, 2010 on Facebook, you wrote on your status: Quote, "The best summer ever!" Close quote. On August 11th, you found out you had malignant melanoma. What was that like?

Mary Elizabeth Williams:

Uh, it was ironic, I guess is the first word. I work from home and I was sitting at my desk. I was on deadline for a story. And my phone rang. About a couple of days before, I had gone to the dermatologist and had her look at a little bump, a little scab, that was kind of funny on the top of my head. I hadn't really thought anything of it. I had not thought cancer at all. And even when she said that – skin cancer – I thought, okay, then just scrape it off. And she sent it for a biopsy. And as I was working my phone rang, I saw that it was her. I picked it up and she said, I'm sorry. And those two words changed my life changed. My identity changed, my relationship with my mortality, that was the beginning. And she said, it's malignant. I have made an appointment for you at Memorial Sloan Kettering for tomorrow to meet with an oncologist. So I finished writing my story and then when I filed it, I put my head in my hands and I cried. And that was the beginning of my new life.

Dr. Diane Reidy-Lagunes:

You said in your book, at first you didn't want to talk about it. And that quickly changed when you decided to go full in with public disclosure, if you will. What made you make that decision?

Mary Elizabeth Williams:

Yeah, I guess I don't do things by half measures. The first day that I was diagnosed, I told a very, very small number of people. And I said, I feel like I don't want to go public with this. But then after I went to Sloan Kettering and I saw, I think it was really just seeing other people in that waiting room and seeing the diversity of faces and seeing how many people are going through the same thing I'm going through. And also just, I guess, being sort of a professional over-sharer, I went home that day and I wrote a story that then published the next morning. So within 48 hours of my diagnosis, I was out there in public. We all look for meaning in our experiences, especially the most dramatic of them and telling my story as I was living, it was a way of making meaning of it and giving it context.

Dr. Diane Reidy-Lagunes:

You know we say on this podcast often that cancer is a family disease. It clearly affects the patient, but there's lots of other sort of stakeholders, if you will, in that. And your kids were so young. At the same time, your dad was dealing with stage four colorectal cancer. How did you get through that?

Mary Elizabeth Williams:

Yeah, my father-in-law was very ill at the same time. It all was just kind of a perfect storm. My daughters were young; they were six and 10. That first night, we sat down with the kids – and I remember I made spaghetti – and I said, we have some news. And I think it also helped that they already knew that grandpa was sick. They understood a little bit about disease. And so I said, I found out I have cancer and I'm going to go to the doctor and I'm going to have some surgery, and I don't know what else is going to happen after that, but that's the plan. And my younger daughter said, are you going to die – because kids have no filter – and my older one said no. And I said, I'm going to try really hard not to. And we always – even when I was very sick and it was very dire – we tried to stay honest with the kids. We tried to say, it's not about things we can control. It's about how we deal with the things that we can.

Dr. Diane Reidy-Lagunes:

You talk about Gilda's Club in the book, which I found fascinating. And I also have patients that are young with young families and just the courage to have that conversation can be terrifying and overwhelming. Did that help you? What was the role of Gilda's Club for you and the girls?

Mary Elizabeth Williams:

Uh, life-changing. Absolutely life changing. I started going to Gilda's Club because a friend of mine who is a nurse asked me very bluntly, how are the kids doing? And I said, oh they're doing great. Which was stupid. No, nobody's great. And she said to me, maybe you need to go somewhere where you can be not great. And that was one of the best things anyone has ever said to me. And I think that in the storm of sickness and coping and the encouragement that we all get to put on a brave face and be a warrior and kick butt to kind of have a refuge where you can just say, I'm not doing so great, is enormous.

Dr. Diane Reidy-Lagunes:

We're going to talk about the role of clinical trials a little bit later, but this idea of immunotherapy curing your disease. Could you talk briefly about – you know, we just talked about the emotional side – just how you physically recovered from all this and what that was like?

Mary Elizabeth Williams:

Oh gosh. Uh, so the short version is, I was diagnosed with cancer. I had surgery on the top of my head. I had a pretty intense recovery, and then I thought I was a cancer survivor. And I had a lot of hubris around that new identity. And then I was rediagnosed a year later and it was metastatic. And at that point 10 years ago, there were not a whole lot of options. And that metastatic melanoma had a much lower than 10% five-year survival rate. And so my oncologist said, well there is a clinical trial starting up one floor above me and I would like you to go and meet with Dr. Jedd Wolchok and talk about immunotherapy. And I didn't really know what that meant. It sounded very last ditch effort and very unsafe. And I was really scared and really concerned. I was also really sick and getting sicker. I was symptomatic, my cancer was spreading, I was getting subcutaneous tumors, I could see the cancer, I could feel it. This was really moving at a breakneck pace. And I met with Dr. Wolchok and he talked to me like a person. He answered my questions. He explained things to me in a way that was clear. He didn't make me feel crazy. And Jedd often says I don't treat cancer, I treat people. And that was the experience that I had in that clinical trial. And he said to me, we believe that this can work for you. And so I became one of the first 10 people in the world, one of the first humans, in this arm and the first cohort of this trial for a combination of immunotherapy. So that's kind of how it began. And I believe that all the great science and all the persuasive data in the world don't really mean a lot unless you have that foundation.

Dr. Diane Reidy-Lagunes:

I want to talk about Debbie, if that's okay with you, and her journey sort of before cancer, after cancer, and your relationships. Because as you said, your best friend got diagnosed with stage four ovarian cancer at the same time as you. Can you tell us a little bit about Debbie?

Mary Elizabeth Williams:

Yeah, I love to talk about Debbie. Debbie was my college roommate. She was one of the funniest people I've ever met in my life. Just an absolute wild card. And for most of our lives, we were on very, very parallel tracks. We were the same age. We had very similar lifestyles in terms of diet, exercise. We both got married in the same year. Our kids were born five days apart. And then three months to the day after I was diagnosed with cancer, I got the call from her that she had been diagnosed. So yeah, there were different moments in our experiences where she seemed to be doing better and I was looking really dire. And then I started getting better and then things were getting worse for her. She hung on for a long time. And then in the end, a couple of years later, she died. And it's really important to me to tell her story. And what I want people to understand is that I am not some triumphant warrior who figured it out. I didn't survive because I had better thoughts or better ideas, or because I ate more vegetables. And here are two women whose lifestyles were nearly identical in almost every way, and one of us is here and one of us is not. And the things that we put around disease to try to explain outcomes – that somebody maybe didn't try hard enough or somebody didn't pray hard enough – ultimately a lot of it comes down to genetics and where you are treated and who your doctors are and just kind of where the science is in a particular moment. It's not about necessarily your personality or your courage or your strength. And Debbie was probably the strongest person I have ever known, and she's not here. And I want people to understand that what matters is just what we do with the time we have, and our understanding that there's only so much we can control about that.

Dr. Diane Reidy-Lagunes:

I think you said it so perfectly. I also want to talk about the guilt – you certainly talked about it in your book – guilt to have stage four disease and what that might be and mean for your family. Guilt to be cured of it and what that might mean for those that aren't cured. So could you talk a little bit about that and how that all felt?

Mary Elizabeth Williams:

There is a sense that because it's not congenital that I did something wrong, I did something bad. I had people say to me, oh did you tan? First of all, no. But second of all, if I did, does that mean I deserve to die? It's insane. So there's the stigma, or like, you didn't try hard enough. And that sense that you have of asking yourself, why am I here? It's hard having conversations with the surviving family members. It's hard just kind of feeling like maybe I was just the beneficiary of dumb luck from the universe, and I don't know why I'm here. I don't know why some of my friends aren't. I know I got very, very lucky and I just kind of try to take the win.

Dr. Diane Reidy-Lagunes:

What about that grief? Can we talk about the voice for the people that may not have the outcome that you had? And how do we hear those folks better, and what do they need, in your opinion?

Mary Elizabeth Williams:

Oh gosh, yeah. It makes me really crazy. People who are at late stage who are very sick, and then the people who die or are dying, often, they and their loved ones and survivors feel very unseen and very neglected. Because when you see literature, when you see posters for hospitals that promote this idea that everybody's going to get better, that death does not exist. Pain and suffering do not exist. That does a great disservice to everyone. It does a disservice to the people who get better because then they go on to promote that fallacy. And it does a great disservice to the people who don't get better, who either live long-term with lingering pain and suffering or who pass on and then their families are left to feel part of this invisible community. It's okay to acknowledge that we all die and we're all going to grieve. And if we don't have places to grieve, and if we don't have that space because it doesn't exist and it's bad and it's, "you lost, you lost your battle," how can we feel seen? And how can we feel that our experiences meant something had meaning. How do we make meaning them?

Dr. Diane Reidy-Lagunes:

Speaking of the medical community, let's talk about trials and what you think we – and I'm part of the medical establishment – did right and wrong for you.

Mary Elizabeth Williams:

Okay well, I'll start with what was done wrong. I love to tell this story. There was one person on the staff who I met with very early on, who is a doctor at Memorial Sloan Kettering, and just came in – I had never met him before – breezed into the room. And he walked in with a bunch of his fellows and he said, "Oh, here's this tumor that I was telling you about." And he's like, "Oh, so you can see on the back, there's this two and a half centimeters subcutaneous tumor." And he started talking to me, he said, "Hey, how are you doing?" I said, "It's really painful. I actually, I talked to my doctor about maybe having it surgically removed." He said, "Oh no, well, you can't do that. If you do that, you can't participate in this trial. We need that. We need that tumor." And he really didn't understand that that tumor was attached to a living, breathing human. And that was really hard. I was really flabbergasted, but I went to the front desk and I said, I don't want to meet with that person again. And I don't want to see him. And I never did. I was respected. A lot of people don't have the agency that I have. They don't feel empowered because they have never had an experience in the healthcare system where they felt like it was okay to push back against an authority. We know that poor communication winds up creating healthcare outcomes that are devastating across the board in hospitals.

Dr. Diane Reidy-Lagunes:

It's okay to speak up. So being able to speak up and say, "That didn't feel good and it's just not okay" is hard, but it's needed because sometimes docs just truly have blind spots. You know, they don't recognize how inappropriate that is.

Mary Elizabeth Williams:

Yeah, and they're human beings too. And this is actually the dissertation work that I'm doing now in my doctoral program. It's about that and about how do we close those communication gaps? That can be really hard for them as well when they know that they are under time pressure, when they know that there is a waiting room teaming with patients. Figuring out ways that make the system more sensitive to everybody, then it's good for everybody. It's going to be better for the doctors, it's going to be better for the nurses, if we all can figure out how do we have a clear communication style. Jedd Wolchok really is just for me, the absolute exemplar. He is the platonic ideal of, to me, what a doctor-patient relationship can be, especially in the clinical trial space where you really need to, you need to be able to say, "Here's what's going on" because you are of service to this trial. You are necessary to convey really crucial information to the doctors and researchers. You have a role.

Dr. Diane Reidy-Lagunes:

Exactly. I want to just emphasize that because it's so critically important, not only for your own safety, but for the safety of so many other people that may be on that therapy one day. It is a responsibility. It's an enormous responsibility to speak up and share if you have a side effect. Because if you don't say it, others may get this medication without realizing this is a potential problem.

Mary Elizabeth Williams:

That's huge. I am not just a passive vessel of medicine. I am here to do something. I have a role in this process. That is so important because when you have that trust and you have that relationship, that's what makes patients come back into the process. That's what makes people keep their appointments. That's what helps people stay on the protocol, is that sense of "I have a stake in this." The process of getting into clinical trials is terrible and the trust and the lack of really clear information and the lack of really clear humane conversation. That's where the gap is, and that's something that it feels like we can fix.

Dr. Diane Reidy-Lagunes:

I want to switch gears and talk about friendships and particularly your friendships with folks that didn't have cancer and your experiences there. That's sort of the invisible barrier between the well and the sick that you wrote about your book.

Mary Elizabeth Williams:

Yeah, it's strange. The snowglobe of your life is going to get shaken up and everybody's going to land in different places. And people who you thought were really close to you may wind up way over here. People who you didn't even really think of, or consider, may wind up being your best allies. My daughters' godmothers ghosted on me. I don't know if they just never been through something quite like that, but they just couldn't deal. I had friends who just completely avoided me after that, because maybe they didn't know what to say, or maybe they were freaked out, or I don't know, maybe I just made them sad. I don't know, but it was really hard and it was really hurtful. But the other side of that is I had people who had gone through things. I had one person who wound up really stepping up for me. Her son, when he was born, was in the NICU for a really long time. And she's got it. She got what it's like to have to be at the hospital a lot. She got what it's like to be really tired and feel like you're underwater. And I had people who I didn't know who were absolute rock stars. As hard as it is to lose relationships, I never felt alone. I promise there are people around you who get it. The other thing is just saying yes, and letting yourself be helped and humbling yourself to that experience of meeting people. We're a very bootstraps culture. Strength can be a real lie and that kind of independence can isolate us. I feel so much more connected now that I have just admitted that I need help. My good friend, Jessica. She was a real paper hoarder and she had a real hard time throwing things away. And in the last stages of her life, I did really what is known as Swedish death cleaning, and I would go over to her house and I would help her shred her papers. And we would just sit together and shred. And it was amazing! And we had some of the best times together on her couch as I shredded papers for her. And I would not trade those moments for anything in the world. And I got to have them because she let me help her.

Dr. Diane Reidy-Lagunes:

So before we say goodbye, in the category of funny/not funny, what are some of your favorite unhelpful comments that you've heard in this journey with cancer?

Mary Elizabeth Williams:

I think my favorite is, "Oh my God, my uncle died of that!" Yeah, thanks. That's probably my number one. Don't tell people what other people have died of. Or also, don't say, "Oh, well, my cousin had something completely different and they're all better now." Also not super helpful. Definitely don't tell them, "Eat more garlic. You'll do better." But I think kind of the least helpful thing anyone can say is to say nothing. I think the least helpful thing you can do is to just ignore it. And I would tell anyone, just say like, "Hey, that sounds hard," or "How are you doing?: Or even just send a text saying, "I was thinking of you today." And so all you really need to do to just let the person know "you're still on my radar. I am still thinking of you" means everything, everything in the world. And to just be able to be around people who let you keep your sense of humor, let you be afraid when you need to be afraid, let you laugh when you need to laugh. That's huge.

Dr. Diane Reidy-Lagunes:

Mary Elizabeth, I want to thank you so very much for being with us today. I learned a tremendous amount and you are an inspiration. Cancer survivor, journalist, and author of "A Series of Catastrophes and Miracles," Mary Elizabeth Williams. Thank you for being on the show.

Mary Elizabeth Williams:

Oh, thank you so much for having me and thank you for everything that you're doing. I'm so grateful.

Dr. Diane Reidy-Lagunes:

Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information, or just send us any questions you may have, please visit us at mskcc.org/podcasts. Help others find this helpful resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. These episodes are for you, but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical information. I'm Dr. Diane Reidy-Lagunes. Onward and upward.