S1 Episode 7: A Life Unravels

When Demetri Kofinas was diagnosed with a benign pituitary tumor, he faced bizarre symptoms and difficult choices. With the help of his father and Dr. Jeffrey Greenfield, Demetri took on the challenges and came to a decision. 

Dr. Stieg: I’d like to welcome my two most fascinating guests today, Demitri Kofinas, and Dr. Jeffrey Greenfield. Dimitri is creator and producer of Hidden Faces, a podcast exploring the underlying forces driving global change. And Dr. Jeffrey Greenfield is a Professor of Neurological Surgery specializing in minimally invasive approaches and the complex treatment of brain tumors. I wanted to first clarify for us what the difference is between talking about a benign tumor versus a malignant tumor and then we’ll get into where they cross over into the gray area. But Jeff, would you mind talking a little bit about what the difference is there?

Dr. Greenfield: I think that’s a really great place to start because that really is one of the more confusing features of being diagnosed with a brain tumor and families will often jump right to the question as to whether or not the tumor is malignant or benign. The really interesting part about craniopharyngioma is that it is a benign tumor, but it carries with it so many complicated features that are often associated with more complex and even sometimes malignant brain tumors with respect to how it affects the brain. It’s a little simplistic to call it a benign tumor because while the pathology, what we see under a microscope may be benign. The consequences to the brain and the person experiencing both the effects of the tumor itself and the repercussions of surgery are anything but benign.

Dr. Stieg: And Demitri, I think you can give the personal aspect here. You I’m sure were told though, this is a benign tumor — it’s about a decade ago now when you were diagnosed. It had profound impact on you, your life, and who you really were at that time.

Dr. Greenfield: I had gone to a surgeon at another hospital and I had a very negative experience with what he told me. If I remember correctly, was two, I spoke to one over the phone, which was out of New York, and they said, you got get to the surgery now. This is going to grow a hundred, you know, they didn’t say a hundred percent I forget what they said, but it was like, it’s going to grow. You better do it now rather than later. And another one from New York told me, whatever this tumor is going to do to you, it’s not going to be as bad as what I’m going to do to you. And he had a tool on his desk, and they only do craniotomies there from what I understand. And he had a tool on his desk, it was a big tool and he said, you see this like, you know, go in your head, and — I’m kind of paraphrasing here, but that that really kind of was the experience.

Dr. Stieg: So they frightened you.

Demitri Kofinas: It was super scary. My father was with me then and he was my advocate and he was walking me through this process and he was devastated by the situation.

Dr. Stieg: He was with you at the doctor appointments?

Demitri Kofinas: He was.

Dr. Stieg: Was he devastated by the way the doctors were relating to you or by the information you were getting?

Demitri Kofinas: He was devastated by in that first instance, my dad, I think, on some level my dad was relieved because he wanted to believe that he could, we could. That it would be okay that it wouldn’t grow because the doctor basically said, it’s probably not going to grow. It’s been there since you were born. I would leave it. But then he said to me, uh, this is, I’ll never forget this. He said, “But don’t come back to me in a wheelchair with blinders on and blame me, or something like that.” It’s totally nuts.

Dr. Stieg: The amazing part about this is early on in your process, you’re normal. Now. You find out that you’ve got this quote benign tumor and it’s two physicians you’ve met with have scared you to death. You and your dad are now having to cope with this.

Demitri Kofinas: I became very depressed. I mean it was interesting. My first reaction was there was almost a kind of you, not euphoria, but you know when you suffer, you go through a lot of suffering. There are periods where you just feel, it’s almost like there’s a transcendent feeling to it. I just remembered losing my inhibitions. Maybe that’s the best way to put it. I lost all inhibitions in a radical sort of way. And that ended up actually then coming back in a much more, uh, in a much more constructive manner later, which was, I would say, the biggest contributor to my life changing around in a positive way. It was devastating. I became depressed. I had a great job working in strategic product development for Cablevision, just me and a handful of people picked by the lead engineer for the company. And I quit. After a few months, I was so depressed. I didn’t like what I was doing, why I wanted my life to mean something. I was afraid that I was going to die. I didn’t know how long I was going to have and I, I felt like I wasn’t living my life, but I didn’t know what I wanted to do and I was depressed and I just wanted to, I just wanted it to be over somehow. I didn’t want it. It was just terrifying. It was hard. It was. And then, um, eventually I was able to turn my life around, you know. I fell in love. All these things happened for me and I had let it go. I’d forgotten about the tumor. And then, uh, at some point the symptoms appeared.

Demitri Kofinas: I was beginning to play Tetris incessantly in the summer of 2012, which was super weird because I could tell you we’ve all probably played Tetris. But it wasn’t until this experience that I realized what a dumb game it is. It doesn’t require much of any intelligence at all.

Dr. Stieg: Glad I’ve never played it.

Demitri Kofinas: It doesn’t, I wouldn’t have known to tell you that if I hadn’t had gone through this experience, but it was this, it was a, a sort of, I don’t know what people do when they have tumors. I’m sure Dr. Greenfield’s seen all sorts of crazy things. But I — then I was also smoking incessantly, by the way, in which I was embarrassed about, when I met with Dr. Greenfield and I had to get a chest scan. And afterwards he, I think he even told me explicitly that he better not catch me smoking. And I, I remember feeling super anxious or guilty that I might, you know, be confronted by Dr. Greenfield in a random place. But anyway, to, to bring it back. I was playing Tetris incessantly during production meetings. I was, the host of my show was asking me questions. I was playing Tetris. So that was weird. And I began to smoke incessantly. That was weird too. But, it wasn’t until my drive up, we got the U-Haul with my ex-girlfriend from Washington DC, and drove up to New York. And I found out that my grandfather had died. And I did not remember that fact until about a month or two after my surgery. Most of my memories came back, what felt, what felt like days after my surgery. But they were these sort of things that came back later. And that just came back one night and I emailed my sister and I said, I just remembered that our grandfather died and I expressed a bunch of feelings about it.

Dr. Stieg: Perhaps Jeff, you could give us a little bit of groundwork here about why, where this tumor is Demitri would have had these problems with memory, emotional changes, concentration changes and things like that.

Dr. Greenfield: Well, I don’t think Demitri and I talked too much about whether or not that was going to get better or not. I think that when I usually talk to patients and their families, like I was talking with you and your dad. We’re really so much more focused on the things that we’re familiar with that are tangible things like the pituitary gland and the hormones that it creates and the impact that the tumor might have on your vision and the repercussions of surgery. And I think we often forget about some of these cognitive impacts that tumors might have. The neuropsychological aspects of craniopharyngioma are hard to understand. And what scientists have looked at and explored for this is it’s pretty minute. And so we’re really on the tip of the iceberg in terms of understanding why this all happened to you.

Dr. Stieg: The decision process that you were making was when you were normal except for this questionable testosterone level. Over time, you started having symptoms both memory wise but also emotional. But the other large part, it seemed to me about your decision process was you were terrified about losing pituitary function and the thought of being on all those replacement hormones. And maybe you can talk about your emotional part and Dr. Greenfield can talk to us a little bit about what that means for a patient.

Demitri Kofinas: This whole experience was devastating for me. Dr Greenfield mentioned the possibility of blindness that was a risk, a major risk of surgery. The only options that had been presented to me were full craniotomy.

Dr. Stieg: Craniotomy meaning making a big hole in the skull.

Demitri Kofinas: Making a hole in my head, yeah. And using that tool, that medieval device that the other physician was waving at me — or the endonasal surgery or transsphenoidal. But these were just medieval. This is just what, you know, what is this thing? And in all of those cases, that was a risk as I understood it, of blindness. So I was stuck with those images in my head. And I think also to be honest, it wasn’t just that I had a hard time remembering what Dr. Greenfield had told me because I remembered it in a way, but I biased the other ones. I was so despondent and I was so afraid of opening my heart to the possibility that something good could come of this situation that I, I was unable to really hear what he was saying, which was we can do the surgery with no side effects.

Dr. Stieg: Loss of vision is pretty understandable, but this tumor also involves the pituitary gland. Jeff, perhaps you could explain if you lose that gland, what does that mean for a patient?

Dr. Greenfield: Pituitary gland, people often have, as kind of a rudimentary idea, that it controls hormones in a global sense. And it is true. The pituitary gland is actually made up of an elegant mix of lots of different cells. Each one which secretes a specific molecule, which then interacts with the brain in a complex feedback pathway to allow the body to do a number of things. It helps the body make steroids. It helps the body make the hormones that regulate the sex hormones, how we make our eggs and our sperm. It affects the levels of thyroid molecules in our body. So there are a complex harmony of molecules that the pituitary gland regulates. And the key for patients with craniopharyngioma like you had, is that it’s not actually the pituitary gland that was dysfunctional in your circumstance. We weren’t worried about making it dysfunctional. We were worried about the connection between the pituitary gland and the brain. There’s a very thin little fiber bundle called the stalk that actually connects the pituitary gland to the brain. And that’s where craniopharyngioma comes from. And so it’s almost impossible to remove a craniopharyngioma without a significant risk of damaging that stock, thereby disrupting this kind of beautiful highway between the pituitary gland and the brain. And that’s the situation that you’ve found yourself in trying to balance.

Dr. Stieg: And what that means for the patient, when Dr. Greenfield talks about all of these various hormones is really what the patient describes is change in sex drive, change in energy levels, change in sleep, change in the ability to concentrate, change in their ability to deal with stress or not deal with stress. The impact that you are worried that, oh my God, if I have this surgery I’m going to be left with, with the symptoms that actually eventually developed for you.

Demitri Kofinas: Hearing Dr. Greenfield, talk about the pituitary stalk. I just had visions again of how complicated the surgery appeared to me both before and afterwards. I sent Dr. Greenfield email an email the day after I got released where I, I expressed my just, awe at what he and his team had done and it just, just hearing it again, just thinking about that he was in my brain and there was just such a narrow margin for error. No margin for error.

Dr. Stieg: Another interesting component of all this is the relationship you had with your girlfriend at the time and the relationship that you had with your father. You said he’s a physician. Sounds to me like he was a real guiding force and light for you in this process. How did those things change as your disease progressed?

Dr. Greenfield: Well, I didn’t see my dad much when I was getting my, my symptoms. I was living in the city, I was living with my ex girlfriend and she was, you know, working a lot and I was, I was home, you know, uncharacteristically despondent, not just despondent. I would say what was uncharacteristic about my condition was that I was stumped and that’s not something that is usual for me and it was so, it was so, it was so difficult for me and what was I doing? I was going out in the balcony and smoking incessantly, smoking cigarettes and throwing them on the balcony. Not tying my shoelaces. I mean I was doing all these things and I spending a lot of time alone. I lost the capacity to imagine and that impacted not just sex. I realized so much of what was missing only when it came back.

Dr. Stieg: What was it about the doctor patient relationship that you obviously had some frightening things happen early on. Then you met dr Greenfield and a light went on that this was the way to go.

Dr. Greenfield: Well, look, I grew up around doctors, so I know doctors in and out. I think it’s a tall order to ask most physicians to fulfill the emotional duties that we wish they would fulfill. Uh, and that I think in some ways they should be able to fulfill. Unfortunately, they don’t often, I’d like to say your physician, your doctor should express a certain, I don’t know what the, what, how you would describe it as, uh, a warmth of basic sort of empathy. But I think that’s a tall order to ask for honestly. You know, I don’t know if there’s an incompatibilities with most physicians, the type of learning and expertise that it requires to be a physician and the emotional intelligence that is also necessary. You know, the type of patch Adams, but dr Greenfield did have that. If it were not for my father, I wouldn’t have found dr Greenfield, you know, none of this would have happened.

Demitri Kofinas: He worked very, very hard to make it happen. He didn’t just apply his expertise and his intelligence and his vetting capacity, but his persistence and he had reached out. It started by reaching out to someone at Harvard who had directed him to someone who was at a conference in Germany who took my call with my father and said, you need to speak to this woman. And she said, you know, this is too big for radiation, at least right now, but you should speak to Greenfield. And, and my dad, that’s the one thing stuck out to my dad that he said to me, and he said it repeatedly, was that she said, “He, he can, he might be able to come in from above.” Which is so weird to hear given everything that we had been told. And then we met with Dr. Greenfield together. And that was basically what he said. And it was, to me it was just like, what are you talking about? Like, you know, I don’t know what you’re saying. Like I have a brain up there and what do you mean you’re going to come in from up there and you’re not going to cut anything. But my dad got it and I was in such a fragile intellectual condition that I was unable to process what he said, but I was able to Intuit from my father’s emotional relief.

Dr. Stieg: Jeff, maybe you can in lay terms, describe what simplistically was different about what you were offering versus what Demitri had heard before.

Dr. Greenfield: Yeah, I was thinking that maybe we needed a pause there to explain a little bit about what he’s referring to because there are a number of ways to get to the center of an egg. And essentially when you’re talking about a large craniopharyngioma, this is a basically a big mass that’s right in the center of the skull. And so, the ability to get at it from different orientations through the nose or through the skull, through a big hole like we mentioned before, are certainly things that are, have been passed down through generations. And it’s the way that most surgeons address these. In a funny way Demitri, the fact that you waited so long and were so, um, insistent upon continuing to find other alternatives probably is the single factor that allowed us to approach it via this technique because it had gotten so large that the big kind of cystic portion, which is a fluid balloon, like a sac that comes off the tumor, had actually extended so far up into the middle of your brain that it went into an area called the ventricle. And we don’t often see tumors that large in adults. And so when you look at a picture of your tumor from the side — I remember going over this with you. The actually the shortest distance to get to the tumor was actually right through your brain. It obviously involves going through your brain a very short distance, but that accessibility allowed us to access it through a very, very small hole with a very, very small instrument called an endoscope and actually drain out all the fluid and reduce the size of this big cystic mass down to a small fraction of what it was originally.

Dr. Stieg: We’ve gone through the lead up to surgery and we’ll come back in another episode to discuss what life is like after surgery.