S1 Episode 8: Rebirth After a Brain Tumor

Memories return – along with a surge of confusing emotions – after Demetri’s surgery to remove a craniopharyngioma. Dr. Jeffrey Greenfield joins his patient and Dr. Stieg to talk about revelations after brain tumor surgery: Demetri learns the value of surrender while his neurosurgeon develops a better understanding of his role in his patients’ lives.

Dr. Stieg: I’d like to welcome back Demetri Kofinas and Dr. Jeffrey Greenfield. We’ve been talking about craniopharyngioma and Demitri has gone through the history of his life up to the point that he had surgery and the intellectual and emotional changes that he’d had on his life and his relationships and his work, and he then had surgery with Dr.Greenfield. Now I’d like to concentrate more on what happened after. This was obviously an anguishing episode in your life that went on for what, about five years prior to having the surgery and then you had the surgery in what, 2013? What happened?

Demetri Kofinas: Well, by the time I went in and had surgery, I was, I had full blown anterograde amnesia as I think we either stated or, or it was implied by what I was saying in terms of the symptoms. I couldn’t remember much. I couldn’t remember who I had just seen. I couldn’t tell you what a giraffe was. I could tell you it was an animal. I could tell you had a long neck, but I didn’t know what an animal was. If my symptoms had persisted after the surgery, I wouldn’t have probably known where I was. So the first indication that I had had some relief as a result of what happened was that I even knew where I was. And I knew immediately where I was. And I remember seeing my father and my mother and, uh, my, uh, my girlfriend and I had told my dad before the surgery and I remembered this, “I’m going to look to you and I want you to tell me what happened.” And I looked at him and he said, you know, it was great. And, I remember my dad saying that he saw the hyp— that Dr. Greenfield saw the hypothalamus pulsating after the, the pressure from the cyst had been removed. And I said, “Wow, he saw, he saw the hypothalamus pulsating.” I understood immediately what that meant. And so immediately understood that I, I was getting better and my father had, that was an emotional experience for him because he hadn’t seen that. I mean—

Dr. Stieg: You saw that the lights were on.

Demetri Kofinas: Exactly.

Dr. Stieg: And, you appreciated that the lights were on. Internally and emotionally, how did that affect you?

Demetri Kofinas: Oh my God. I didn’t have my cell phone on me and I wanted all these numbers cause there were certain people in my life who had stood by me or who I had a close relationship with during this time as I wanted to call them and tell them how, how well I was. And they were so overwhelmed, they could still tell you the story of what it was like to hear it from me. It was a, I heard from other people’s voices and from their facial expressions when they saw me, it was an affirmation that I was getting better. I was okay. It was a miracle.

Dr. Stieg: So for you, it was an awakening.

Demetri Kofinas: It was, um, first of all, the reacquisition of memories that I had never remembered making, but that all of a sudden were, there was one of the scariest things that I’ve ever, because it was evidence of how messed up I was and there was no guarantee that that was not going to reverse.

Demetri Kofinas: So it was scary. At the same time. It was exciting. I mean, when I left the hospital and I came home, I wasn’t able, for example, to use Skype for months and I thought it was because Skype was broken or my computer was broken, but I just didn’t remember the password. I go home and just enter my password, my computer. I go into my parents’ house put in the code for the garage. Everything just started. It was like, you know that sound on your Mac when you hear the unclick—.

Dr. Stieg: You got your life back.

Demetri Kofinas: Yeah. But literally everything unclicked.

Dr. Stieg: Jeff, what did you see? The same kind of changes?

Dr. Greenfield: Well, I mean I’m getting a little emotional because, no, I mean I think to touch back on what Demitri had said before about how do you, how do you find the right balance as a physician with the physician-patient relationship so that you emote that empathy and you create that connection and warmth but at the same time protect yourself against what we do, which is a very scary field sometimes. And I think we all as physicians find that own particular balance and that own line where we get as close as we can and feel that it’s comfortable. But we don’t operate on our loved ones. We don’t operate on our friends. And there’s a reason for that. And so I think I might not have appreciated the intensity with which you were experiencing that rebirth and that renewal. And again, I read that article afterwards and it blew me away that maybe I was blind to some of the things that you were experiencing before and actually the rebirth that you had after surgery. Clearly I knew it was successful and in a technical sense and looking at the MRI scans, I felt validated with those kind of metrics that we’re familiar with. But you know, it’s actually really powerful for me to hear you describe it like this.

Demetri Kofinas: It was, it was kind of like the movie Awakenings, that particular moment in my mind, the way I remember it because everything was kind of this rebirth. Everything was, and uh, and I remember it was like five in the morning, six in the morning. It was like before you did anything else. It must have been when you came to my bedside was the day that I got released and you were just sitting right across from me. And I just remember waking up and just seeing you there. It was the weirdest thing. I was like, what is this? *laughs*

Dr. Stieg: How long has he been watching? “Hope I didn’t do anything embarrassing!”

Demetri Kofinas: So great. Right? Cause like for me, Dr. Greenfield was in this, in this story. I mean, I was the protagonist. Clearly, I was the one with a brain tumor. But, you know, chief, chief character, right? And so it’s an unusual feeling to have to give your life to someone that you hardly know and for them to, to service you in a way that is not just, you’re not just grateful for, can’t even, it’s not even reasonable to expect that type of outcome. And so you have an unusual feeling of gratitude that is just not normal for any other place in your life. You don’t normally feel that way about someone that you don’t know. And so that was, you know, those were intense feelings that I had.

Dr. Stieg: You seem to be a person that’s very comfortable with expressing your thoughts and emotions. And I wanted to touch upon one of the aspects that we as neurosurgeons, unfortunately I have to deal with on a daily basis is not only your disease process, but the process effect on both you, your emotional sense of self, your relationship to your surrounding world, and also your relationship with the loved ones in your, in your life and their relationship with you. And our role as physicians trying to help you balance that. Do you have any advice for people about how to deal with all of that stuff going on? The emotional, the physical.

Demetri Kofinas: Well, it’s a big question. Do I have any advice? Um, people have reached out to me over the years. Many people have reached out to me from having read my article or, or for other reasons and I have never shied away from helping people on an individual basis. Some people reach out to me and it’s like, you know, you want to say to them, “Why are you reaching out to me? You should reach out to a physician. This is, this is crazy.”

Dr. Stieg: That was the point I wanted to get to is, like you said, everybody is different. But do you think that recognition of whatever the situation — is probably the key component? I recognize that you feel badly about not remembering and now all of a sudden you remember. I recognize that you ignored me and just, you know, giving the person permission and talking about it.

Demetri Kofinas: Yeah. The worst feeling in the world is when you’re going through hell and everyone around you is not experiencing what you’re experiencing. And they have the luxury of playing it down. Yeah. And that’s the worst experience for anyone to say, “Oh that’s good. It’s going to be okay.” No, it’s, you don’t know it’s going to be okay. You don’t know that it’s going to be okay at all. Don’t tell me it’s going to be okay. Acknowledge what I’m telling you. Acknowledge what I’m feeling. And that was an experience that I had before my surgery. And it was an experience I had after my surgery. The first time I cried was when I came home after my surgery and there was a friend and God bless her, it’s not, it wasn’t her. You know, she did the best she could, but she happened to be there and she, uh, she said, “It’s over now. It’s, it’s behind you. You’ve got to move on.” And I just remember being so angry cause I just thought, you know, I had just been through all of this. You haven’t been through any of that. And, and, and in this, just, this one moment makes you feel uncomfortable. You’re not doing it to hurt me. I just remember one of the experiences I had was this, the resentment and anger that this had happened to me. It’s such a young age and my inability to relate with the people of my age group. I didn’t know anyone else that had had a brain tumor.

Dr. Stieg: Did you get help with that?

Demetri Kofinas: Well, I was seeing a therapist after my diagnosis who I still see. He was a wonderful support during the process, but again, I would just say like, it’s just one of things where you can’t — also for loved ones, like I just feel like the best way to handle the situations for the people around a patient is just to be as transparent, honest, and unfiltered as possible.

Dr. Stieg: Give you the space.

Demetri Kofinas: Yeah, and I feel like, you know, people want to feel seen and they want to — I think that you feel alone because you are alone. Look at the end of life. We’re all alone. You know, we have to face death on our own. And whether someone’s with you, they’re not going with you. You know, Christopher Hitchens, the writer and intellectual, when he was facing death, he wrote a book on mortality. He was writing out his thoughts and one of the things he said was that the worst feeling is not just that you’re at this great party and someone taps you on the shoulder and says, “Got to go.” But it’s that the party is going to go on without you. It’s the sense that you’re leaving everyone. And that was what I felt when I went into surgery. I had that experience, this just an animalistic level of fear. And it was in that moment, it was a fear of loss of not just my mother, not just my father, but of the whole world and not knowing what was outside that door. And that was so scary.

Dr. Stieg: So you’ve had the luxury of thinking that you were leaving the party and now you’re back in the party. How is, how is life different?

Demetri Kofinas: How’s life different? I mean, one benefit of the experience was seeing old things anew, but in fundamentally more profound ways. There were movies that I wanted to watch. Again, I’m a very big a visual learner and so I, I’ve, I never realized really until after my surgery that I had a natural gift for that almost photographic memory, you know, and I can recite, you know, lines upon lines for movies and scenes, which I actually did for fun to my ex-girlfriend. I did the whole, like the first 20 minutes of When Harry Met Sally. It’s so crazy—

Dr. Stieg: Hopefully not that scene in the diner?

Dr. Greenfield: Well we all know that scene, but I literally put on the movie and I was reading the lines before right before they would come and it was just crazy. But I didn’t realize that until afterwards, but there were movies that stuck out to me cause I learned that way and they all made sense to me. The whole thing made sense and myths and stories. They made sense. I understood where it was all coming from. And the culmination of that was during my radiation. That was, you know, I describe it as a religious experience and I’m not religious. I’m an agnostic. I’m an instrumentalist when it comes to science. I don’t have any answers, but uh, I’m a mystic in some sense. But uh, but it was, I was walking, I lived. I had a beautiful apartment at the time. I would walk from Columbus Circle all the way down to Memorial Sloan Kettering at 7 in the morning for my radiations. I was so scared the night before, you know, my mom said, “Don’t worry, you know, it’s going to be over in six weeks.”

Demetri Kofinas: It was daily, six weeks. She’s like, “Don’t worry, you won’t even remember it. It’ll fly by.” I was like, don’t you get it? I was like, I don’t want time to fly by. Like time had become so slow and it becomes something that I wanted. I wanted every moment. I wanted to soak everything out of life and to think that I had to find a way to get through six weeks of this, what seemed like just horrible going back to the hospital. But it turned out to be the most beautiful experience of my life. And that’s not a joke.

Dr. Stieg: Well, it’s clear that you’ve got much to share and much to teach. Jeff, what did you learn from all of this as a physician?

Dr. Greenfield: I feel like I’ve learned a lot throughout the entire process. I mean, I think part of reflecting on a complicated case and developing a relationship with a patient is, is fairly unique and I think we all have experiences as physicians, particularly with the neurosurgery where we can affect such a dramatic change in someone’s life that the relationship changes forever. And that is both a blessing and can be a curse as well for neurosurgeons. And so for me, both reading your article and then reconnecting with you and hearing your experiences makes me very introspective about how I talk to my patients, how I will think about patients going forward with respect to the things that are not on the MRI scan. How will you reflect on the relationships that people have with their family? I feel like I do this inherently to some degree, but I think in a more conscious sense, and maybe part of my role as an educator will be to impart this to future generations, is that this is really part of who we are as healers and as doctors. It goes beyond neurosurgery or fancy technical achievements. It really comes down to why we get into the field and why we love being physicians. So I think you’ve probably taught me a whole lot more than the other way around.

Dr. Stieg: I really want to thank both of you for your sincerity and your honesty and what I hope this has highlighted, for certainly has for me and everybody else participating in this podcast, is an enlightenment about the complexity of the brain. Not only structurally. no, you had a tumor sitting and pushing on a certain part, but also the functional component and really — your reachievement of brain health, how you’ve gotten back to a healthy, normal life, and it’s a, it’s a physiologic, a biologic process, but it’s also an emotional and a conscious development that has gone on in your life. I think that it’s marvelous that you are willing to and extremely capable of sharing that set of concepts and emotions with our listeners.

Demetri Kofinas: I’m extremely lucky. I not only my lucky that I was able to find Dr. Greenfield, but I was lucky that my, as he said, my tumor had grown so much that it was protruding through the third ventricle and that the surgery was possible. I feel, I just feel grateful. I feel lucky being here.

Dr. Stieg: Do you feel like you’re just lucky or do you feel like there’s a sense of grace that’s been granted to your life?

Demetri Kofinas: The best way I could describe what I experienced to answer your question was it felt like revelation. It felt like my life had meaning. It had, it mattered. That I mattered. That it wasn’t something that I just had to convince myself of. It just was, and it helped make something that could have been so difficult. So not just easy, but as I said before, one of the most beautiful experiences of my life.

Dr. Stieg: It’s interesting how people that go through near-death experiences actually have the same experience as a death experience in terms of the Kübler-Ross concept. And that’s what you’ve been describing. Your original response to the information was anger, then you started to negotiate and eventually you came to terms with what has happened. And now because of what has happened, you’ve actually gotten a new lease. And it’s interesting to watch how that’s affected you.

Demetri Kofinas: I knew that every day mattered. And I was present in a way that I had never been before. And I was just so aware of people’s emotional states and, and I was in such a place of just acceptance. And, and you know, one of the things that I learned through this process, you know, I was a fighter since I was a kid, literally and metaphorically, I never accepted an outcome that I was not happy with. I found a way, even if I couldn’t get what I wanted, I fought in the, in the face of it.

Dr. Stieg: You were one of the 300 Spartans.

Demetri Kofinas: I kind of, I actually had the opposite experience after my surgery. I realized there is a time for surrender and surrender is not the same thing as quitting or giving up, and I learned the value of surrender and that has served me well in my life.