Transcript: Living with Glioblastoma
New York Times journalist Rod Nordland is confronting his glioblastoma diagnosis with positivity, not despair. In this inspiring episode, he speaks with Dr. Stieg about coming to terms with the disease, what it’s like to live with his everyday challenges, and why he hasn’t shed a tear over it.
Dr. Stieg: Hi, this is Dr. Phil Stieg. Senators Ted Kennedy and John McCain brought nationwide attention to their battles with an incurable aggressive brain cancer called glioblastoma, or GBM for short. GBM is a top target in a worldwide research effort to find cures. We, as neurosurgeons working with our neurooncologist partners use state of the art surgical and therapeutic medical artillery to battle this fearsome disease, but we are not able yet to prevent the cancer from returning. I'm extremely grateful that one of my GBM patients is here today to talk about his experience with this challenging disease. Rod Nordland is a veteran New York Times foreign correspondent who has traveled to over 150 countries and currently is the Times bureau chief in Kabul, Afghanistan. Rod's recent Times article, "Waiting for the Monsoon, Discovering a Brain Tumor Instead" tells the story of the onset of his severe medical symptoms in New Delhi that led to his GBM diagnosis. Rod, thanks so much for being with us today. So tell us a little bit about what happened in India that led to your diagnosis.
Rod Nordland: Well, most of what I just know from what people have told me, cause I have no memory of what it was apparently, a sort of grand mal seizure or something similar to that on the street. A Good Samaritan found me and called an ambulance and managed to get me to a hospital where they very quickly put me on anti-seizure meds and sort of settled it down. With the ambulance in Delhi, you have to flag an ambulance down like a taxi. And the ambulance wouldn't take me because they didn't want to deal with a foreigner and have a bunch of police questions. So they made this Good Samaritan give up his motorcycle and his smartphone or they wouldn't take me. And he did this.
Dr. Stieg: And your journey from India to the United States was not so straightforward either, as I gather.
Rod Nordland: Well it was kind of cushy. I was in business class on Cathay Pacific, which is quite a nice airline. But even at that point I realized that as good as the wine list was, I was probably not going to get any of it. And the nurse they sent with me was a neurological nurse. She was also a British army captain and she was one tough broad and she had to be because she had to fight her way onto every flight. We had to change planes as a 40 hour trip. We had to change planes in Hong Kong and she sort of buffaloed her way in with, cause she had a bag full of sharps and she had an emergency surgical kit as well. She was a medic, much to the annoyance of the other business class passengers, she used the baggage compartments to string up three IV tubes, but she was great. She was really great.
Dr. Stieg: So you're flying commercial with all these wires hanging...
Rod Nordland: Right, right.
Dr. Stieg: Gotta love it. At that point they didn't have a scan or any imaging. They didn't really know—
Rod Nordland: They had done a scan in India.
Dr. Stieg: Okay, so you knew—.
Rod Nordland: But they didn't tell me what it was. They wouldn't tell me it was a tumor.
Dr. Stieg: Okay.
Rod Nordland: They just said it was a a sub cranial space occupying lesion.
Dr. Stieg: Okay.
Rod Nordland: Whatever that was. Yeah, it was just weird. I mean I thought by then I thought it must be a tumor, but they said they couldn't say the tumor until they went in and biopsied it. And I didn't really want them to do that in India. Very good friend of mine who you also had on your podcast before, was your patient. Melissa Rubin, and she had been in a helicopter crash — so she and other friends, you know, persuaded me I should come here and seek you out to do the surgery.
Dr. Stieg: The duration of the flight had its impact on your body as well.
Rod Nordland: 40 hours, yeah.
Dr. Stieg: It's a long time. When you got to the United States and you came here to New York, what was helpful in your interactions with the system and with me?
Rod Nordland: For some bizarre reason, I was in a really good mood and felt that everything was going to be fine. Probably a medication that I've been given or something, but everybody was good humored and that kind of helped. It was kind of a laughfest. I mean that sounds ridiculous, but there was, every time I turned around there was something else funny happening.
Dr. Stieg: So you would say that the pleasant demeanor of a lot of the staff, it was a positive thing for you in terms of what you—.
Rod Nordland: It was, you know, I asked several people like, "Do they give you guys a niceness test before they hire you?" Because everybody was so really nice.
Dr. Stieg: I'm trying to emphasize how important this is to a patient. The fact that we don't get told often, but it certainly is recognized by the patients.
Rod Nordland: And my company wanted me to be on the VIP ward, but it was hilarious because at night I was up, you know, walking around the corridors which they encourage you to do to stay active. And so there, there's some of these, there were like these old men who really had trouble with the typical hospital gown, you know, tying it properly so your butt's not hanging out. And I asked one of the nurses like, who are these dudes like, "Why can't they figure out how to do their cans up? And he said, "Well, they're all like, Saudi billionaires and they probably never dressed themselves before." Well, it just like, it was like that. There was this great laughs the whole time, you know, and uh, it kind of put me in a good mood. I actually asked one of the docs, like, "You guys given me some sort of happy pill?" And they said, "Well, I'd actually already been in, in hospital in India for a couple of weeks. And then by that time it was a week in a hospital here. And they said, "Well, you've probably never had three weeks of bedrest. And that, you know, makes people feel good."
Rod Nordland: They say when you get older, and you know, you should do something new with your brain. So what I had been doing was memorizing poetry. The Second Coming is a poem that Yates wrote right after World War I, and kind of in response to that carnage and, is a kind of appropriate poem for a situation like this. In India, the seizures were much stronger, maybe the meds weren't as good or whatever. And then when I came here the first day I had a really strong seizure. My speech was so slurred, I sounded like a drunk that'd been stopped by the cops and was trying to persuade them—.
Dr. Stieg: We had to delay surgery because of it.
Rod Nordland: Really? Because of that, That's right. Yeah. The response to that seizure was astonishing. There were seven neurologists in the room within 60 seconds and they had ordered an emergency CT scan and then they called for transport. And I think transport is like, the weak link in the hospital, you know, most hospitals.
Dr. Stieg: Yes.
Rod Nordland: So nobody came to drive the bed, so two the doctors jumped on the bed — way below their pay grade and started driving the bed down at breakneck speed to the CT scan. They were going so fast that they kept like hitting the walls when they made sharp turns. And I said, "Geez, I hope you guys are better doctors than drivers." And so we all had kind of a good laugh. So when I had that bad surgery, this is a poem I recited partly to reassure myself, but also to reassure my girlfriend who was there and she saw the changes in me and was quite terrified and I wanted to just persuade everybody that my brain was still working. So as these two doctors jumped on the bed and started driving the bed, I came to this line in the poem, "The blood-dimmed tide is loosed and everywhere the ceremony of innocence is drowned. Surely some revelation is at hand. Surely the second coming is at hand. Anyway, it's a very dramatic poem and I was sort of shouting it and as they drove, you know, breakneck speed out the door.
Dr. Stieg: I understand you had a reaction to the way you and I met and talked in terms of directness of conversation. You have strong feelings about that. Maybe you can go into that a little bit.
Rod Nordland: Well, I'd greatly appreciated that. Although I was a little worried that you'd be that direct with my kids and didn't think that would be very, that they wouldn't take that well. I took it well, I mean I want to hear the whole truth. And you weren't talking about any subcranial space-occupying lesions. Is that even a term you use? I mean—
Dr. Stieg: No, I wouldn't generally use something like that.
Rod Nordland: Yeah. Yeah.
Dr. Stieg: And I was sensitive to how I shared with you and then as a result of what you said, it was also sensitive to the way I had conversations with your, your family and loved ones.
Rod Nordland: I think my family generally took a pretty well because they heard from you, but also from Dr. Fine, the radiation oncologist or—.
Dr. Stieg: The neurooncologist.
Rod Nordland: The neurooncologist, would be handling my postoperative care. He was very generous with his time and also generous with explanations of the science behind the kind of treatment, the followup treatments, to the surgery. I think they all thought the surgery would be done and if it was successful, that would be the end of the story. But it's only the beginning of the story. They really took it pretty well overall. I think everybody's spent a lot of time with them. All the doctors did.
Dr. Stieg: So let's go through the process a little bit. You know, we met, we did your surgery, the diagnosis came back as this glioblastoma. Since that diagnosis, your wound is healed up and now you just completed radiation therapy and you're on chemotherapy. What for you has been the most difficult part of the whole regimen?
Rod Nordland: I've had these, these subclinical seizures I guess they're called, or sometimes they're called simple partial seizures. They're very minor. They're not like my body's thrashing or anything like that. They're totally mental. A little bit like being high when you don't want to be, you know. It's like somebody gave you something at a party and your head's a bit strange feeling. And they make it difficult for me to do what I most want to do is, which is writing and other, sort of, I guess... You would call them higher cognitive tasks.
Dr. Stieg: Just concentration, and...
Rod Nordland: Like, doing... Balancing my checkbook, you know, that kind of stuff.
Dr. Stieg: So you do have difficulty with that?
Rod Nordland: Yeah. Anything involving numbers, just, you know, it's a nightmare. The worst thing of all is a password with a bank or a credit card company. And because I've been kind of in a hospital for several weeks, a lot of my cards are behind. The payments are behind, the banks are behind. When that happens they ask you a lot of questions, challenge questions and all as well as the password and I get the password wrong, then I get the challenge questions wrong and it's a bit of a nightmare. I have an accountant helping me now who I think knows all my passwords, finally. And that's, that's helped a lot.
Dr. Stieg: In terms of your day-to-day life, I mean obviously the radiation therapy is a time commitment, but you're back to writing. Obviously you wrote that editorial piece for the Times. Tell us a little bit about what your daily life is like now. Do you go to work? Are you, are you writing from home? Once you get past your password on your computer, then that's where you do your, uh, your typing and writing?
Rod Nordland: No, I can't type because I have um, my left hand... My left hand has no sensation and generally I have some left-hand motor problems and that, that's the worst. So I can't really type properly. What I've done instaid is write in longhand with my right hand, which is completely unaffected. And I discovered that, your right hand or your good hand anyway, actually works really well because it's got a very, very intimate connection with the brain. That probably goes back to childhood when you first learned to write and I've actually come to enjoy writing with my hand. It's been really, a revelation. So I write in longhand and you can actually write quite fast by hand. I've discovered I can, I can write a thousand words a half hour with my, with my right hand, which is about my typing speed. So that's not really a deficit in wireless, not now.
Dr. Stieg: One of the things that I've always been amazed at, both, you know, while you were in the hospital and also as I've seen you in follow up is your positive attitude. And I want to get into that a little bit because this is not a great diagnosis.
Rod Nordland: You know, I haven't really shed a tear over this. Not once. I haven't like felt depressed at all. I don't know where that came from except maybe just a sort of natural optimism and just a general knowledge that a positive attitude is good for dealing with serious disease in general. Yeah.
Dr. Stieg: Well, I can't believe this was the first serious thing that's happened in your life. So in the past, when serious things happen, were you also quite positive?
Rod Nordland: I think so. I'm pretty positive person. I'm a pretty optimistic person, but I've never had a serious disease.
Dr. Stieg: Well, I can't imagine being in Kabul and that like, that you haven't had some life threatening experiences that you go ooh! And—
Rod Nordland: Yeah, yeah that's true. That's happened.
Dr. Stieg: Put the positive spin on it.
Rod Nordland: Yeah, I've, I've escaped all those successfully. I've had a guy's head shot next to me, which was kind of distressing and, and especially cause his companions wanted us to take him to the hospital and he was pretty clearly dead already and convulsing with a major gunshot wound in his head. But I've been able to sort of escape any kind of personal harm in those situations generally. Also, I think, I think the amount of bed rest really had a big effect. And also the amount of support that I've had from my family, my friends, until just the last week or two, I've not slept alone in a hospital room through this entire ordeal. And then that kind of attention I think was a real kind of high, you know, a real kind of mood enhancer, and has made me feel really good.
Dr. Stieg: What message do you have to family members and to friends as to how they respond to a patient with your type of diagnosis?
Rod Nordland: They have to be upbeat, especially if you're at a point where you've managed to get into a positive mood about it. They need to do that too. And I've actually told friends and family, if you want to come in here and cry or be miserable or "Oh my God, you're going to die." Go do that somewhere else. I don't want to hear it. It doesn't help me at all. There are sometimes cures for this. If my treatment goes well, if I stay in shape, if I follow a good diet, I have a good chance of exceeding the median a lot.
Dr. Stieg: You've changed some things in your daily routine life. I mean, we've briefly outlined the standard of therapy that you've gone through and now we're getting to the phase where you're going to have other options presented to you: your diet, exercise, sleep. Have there been any changes that you've made and things that your — other things that you're looking into?
Rod Nordland: Massive changes. You know, one of your colleagues, Dr. Yaghoobzadeh, actually spent a couple hours with me and some close friends, giving us his Grand Rounds lecture on the gut biome and the importance of a plant based diet. He turned us all into vegetarians. I swear to God, you know, and I never thought that would happen to me cause I've always scoffed at vegetarianism and uh, I'm a big carnivore. So I did, I did start following a pretty strictly vegetarian diet and I've stopped drinking completely, which I never thought would happen either. I did have one glass of wine since this all began to celebrate the end of my radiation and I spent an hour drinking that glass of wine. And I honestly, I didn't enjoy it very much.
Dr. Stieg: Yeah. Taste is a little bit different because of all the medications.
Rod Nordland: So I've stopped eating sweets because I understand that's a real tumor food, you know, I'm the guy that like considers a cake and icing delivery system. *laughs* And so that's been a pretty dramatic change for me. Yeah.
Dr. Stieg: Exercise?
Rod Nordland: Yeah, I've always exercised regularly, but I discovered... the fatigue. I mean, it gets this as well known, but it surprised me that that the fatigue from the chemo and the radiation, you can actually cheat that with vigorous exercise. And so I've been doing, you know, you know, pretty vigorous workout. Whenever I get fatigue, I dragged myself up to the gym. My building has a gym in it.
Dr. Stieg: Yup. Do you have a trainer that works with you or do you just do it yourself?
Rod Nordland: I just do it myself. Um, you know, I work out every day anyway in my normal life. So I do my normal workout, which is, you know, 50 to 100 pushups and that kind of thing, you know. And push ups are this kind of extra—.
Dr. Stieg: You can do a hundred pushups?
Rod Nordland: I can do a hundred pushups, yeah.
Dr. Stieg: All right. I won't ask you to do it during this *laughs*.
Rod Nordland: Like now, I'll collapse halfway through them and have to start over again because I've been a bit out of shape through all this. You know, pushups are something that never get easy no matter how much you do 'em, and my brother does his first thing in the morning. He does 200. It's like, you know, Mark Twain has a famous saying: "You should eat a live frog first thing in the morning because if you do that, the rest of the day is only going to get better." *laughs* And I kind of feel that about pushups and...
Dr. Stieg: That's your live frog, huh?
Rod Nordland: And that's my live frog, yeah.
Dr. Stieg: What's amazing to me is it doesn't sound like your priorities in life have changed much. You're not writing as much as you used to obviously, and certainly not traveling. And as I understand it, you do keep a daily journal.
Rod Nordland: I keep a journal, I always have my whole life, I've got to journal.
Dr. Stieg: I don't want to get too personal. Can you share, what kinds of things? Is it just a diary? Is there anything you would be willing to share?
Rod Nordland: Both a personal diary and it's also a journalistic... Because I don't, I don't trust tape recorders and I've been screwed by them many times. So yeah, it's a mixture of journalistic and also, you know, my accounts, my appointments. One of the worst problems I'm having with the aftermath of this tumor is I keep losing them. I drop them, they fall out of my pocket. I forget where I put them. I've lost them three times in the last few weeks. And each time some nice person has found them and returned them to me. And I think I mentioned in that article that I named my journals. This journal was found, it fell in my pocket, and was on the street and it was found by a lady bishop of the Episcopalian Church. She found my phone number in the book and called me. But I'm sure she noticed the name of this book.
Dr. Stieg: "The Middle Finger of God."
Rod Nordland: Yeah, and which is what I've been calling it because when I discovered that there no known environmental or lifestyle factor that causes the GBM, I said, "Well, it's just the middle finger of God." So I explained that to her why that was there. She said, well, maybe you did something you know that you don't know about. *laughs*
Dr. Stieg: You've noticed that you've started doing some different things, some artistic things. Could you go into that?
Rod Nordland: Yeah, that actually happened before the, this incident in New Delhi about a year before. And I'm really curious about it and wonder if anybody's really found other people like me and researched it because I'd like to write about that. Because what happened to me, I started doing very uncharacteristic things like writing poetry, which is not something, I mean, I'm a journalist. I've never really been in into writing poetry at all. I took up origami and became fairly good at origami and another thing I would never have dreamed of doing. I even started making soap, which again, just struck me as ridiculous.
Dr. Stieg: Well, what's interesting is, your tumor is— was, not is— was in the parietal lobe.
Rod Nordland: Which is motor, not creativity, right?
Dr. Stieg: No, no it is, it is creativity.
Rod Nordland: Oh!
Dr. Stieg: You know, there's a book out called Drawing on the Right Side of the Brain.
Rod Nordland: Oh, wow!
Dr. Stieg: You know, it is the creative artistic side. So I think that there is a possibility that, you know, some of this has to do with where your tumor was. So we hopefully unleashed a new component of your artistic life.
Dr. Stieg: What advice do you have to patients with your diagnosis?
Rod Nordland: So I'm lucky in having friends who are journalists and several of them have come to almost all my doctor's appointments and taken notes. And that is incredibly helpful because there's a lot to remember, a lot to take in and if you're having memory issues, it's really important that you have some way to check that and go back to it.
Dr. Stieg: Do you feel a sense of loss of control by not having the memory or...?
Rod Nordland: Yeah, yeah. A little bit. Yeah. That's very frustrating.
Dr. Stieg: But then you're still so positive. How do you do that?
Rod Nordland: Well, I think just all this family and friend support, I think more than anything else, it's that.
Dr. Stieg: And being honest with your friends, like you said, "Don't cry around me. Just come in with the positive waves."
Rod Nordland: Yeah. Yeah. Like no, I have a couple of friends I've sent out of the room, you know. If you're going to be like that, I don't want you around.
Dr. Stieg: You're now getting past the standard of care kind of stuff that we've gone through with you. Uh, and being a journalist, you're doing a lot of research and a lot of reading. What are your thoughts about what's out there? And some of the people that are, you know, saying I've been cured and that.
Rod Nordland: I think there's a tendency to, to confuse anecdote and science. There are some cases of people that have lived quite a long time with this diagnosis that that's kind of encouraging. You know, I read a really persuasive essay by Steven Jay Gould. It was called, "The Median Is Not The Message," where he talks about how people tend to confuse the average lifespan with the median lifespan, which are two very different concepts. Forget the average. It's the median. And if you look at either side of the median, they're going to be a lot of people who live longer than a lot of people who live less long. And you know, if you're, he said he's among the thousands of people with GBM, there are hundreds who have lived 20 years. If I get 20 years, that's a pretty decent lifespan. More than that would be kind of greedy.
Dr. Stieg: Obviously you've thought a little bit about what death is about. Do you have any thoughts? Anything that you would want to say about that?
Rod Nordland: I think, you know, facing death does really bring you to another place and it makes you appreciate the life you do have. I have a wonderful agent who, we're talking about doing a book about this, and she, she told me this Confucian line that I didn't, didn't actually know, but it goes, let's see, it's something like that we all have two lives, and it's only when we risk losing one of them that we realize that we really only have one life. And, and uh, that's really true. It does make you appreciate your life and what's good in it and that when you start doing that, I think that's part of the optimism I have too, when I realized just how, how rich my life is and how, how much of value there is in it.
Dr. Stieg: It's been an absolute pleasure having you on the show and I hope that your message of optimism and, and really kind of grabbing the bull by the horns and documenting it, I think are messages that all of us should hear for even some of the simplest diseases. Thank you so much for being with me.
Rod Nordland: Thank you. It's been my pleasure.
