Kevin, Neuroendocrine Pancreatic Cancer

Dr. von Gunten: Kevin, I want you and your wife to know this is a group of doctors that’s gathered here for a meeting really from around the world and they’re particularly interested in how you build programs like we have here in their various countries. And one of the things we’ve been talking about is, there’s nothing like real patients and real patients’ stories to have impact. So, for them ̶ Now, they need to know that I don’t really know you, that all I did was swoop in and say, “Are you willing to talk to me in front of a group of people?” So, do I have your permission? I’m sort of getting the consent now. This is being audiotaped and videotape for educational purposes only. We’re not making money so this won’t be appearing on Hollywood.
Who knows?

Dr. von Gunten: Well…
(audience’s laughing)

Dr. von Gunten: So, my thought is, you and I will just chat and basically they’re just going to listen.
I understand.

Dr. von Gunten: That sounds good. So, tell me a bit about your health.
Well, I was diagnosed about , and this is new for me , so I’m not great at talking in front of people.

Dr. von Gunten: Yeah, just talk to me.
I’m going to make it conversational. But I was diagnosed about a year ago, it was the end of September last year, and I was diagnosed with pancreatic cancer as a very unique form, which some of the doctors may know of called neuroendocrine, and….spread very quickly.

Dr. von Gunten: Yeah.
So before right around the time I was getting my diagnosis, at that point, I was already pretty much at a Stage IV and, I sought out the help of a lot of doctors. I have a great family who put me in touch with tremendous facilities, all over the world.

And I, you know, went through a lot of processes to get to where I am today. I did a lot of chemo, I worked through it. I was living in Florida, Naples, Florida. At the time, we were separated for about three years. We were separated about two years before the disease came on. And it was found very uniquely. I don’t know if you want me to get into that.

Dr. von Gunten: I think that’s okay. How would you describe where you are now in yourself? Well, I stay positive every day. I have the occasional not-so-good days, which I think we’re all entitled to. And I have mostly better days, for sure.
I was living on my own with some friends that were helping me in Florida and even though we’ve been going through this long drawn-out divorce, she stepped up on the side of that I should be back here, we lived here. My kids are here and it’s where I belong, in Connellsville, Iowa.

Dr. von Gunten: When you said some days are better than others, what seems to lead to the better days?
Well, certainly pain.

Dr. von Gunten: Tell me about the pain you’ve had.
The type of pain that I get, and this is one of the few signs of this crazy neuroendocrine cancer, is the silence of it and very few, very few signs. And so, usually, you’ve had it for quite some time before it’s diagnosed. I have a terrible family history of pancreatic cancer, not the neuroendocrine, supposedly. And so, there’s was thought that there was possible genetics involved in the beginning, but they kind of ruled this out with what they call an MEN1 syndrome.

My pain usually occurs lower back side. Sometimes it seeps to the front then it’ll seep to the back. So mostly, most of the time it had been lower back and that’s when it got really painful.

Dr. von Gunten: Yeah. And what helped?
A couple of times I went to the emergency room. I was going to the Moffitt Center in Tampa and had phenomenal ̶ my brother, he’s an attorney and had some thyroid cancer and went to Mayo and was in touch. He’s well in touch with high…high people in the physicians world, and was able to get me in to see this guy at Moffitt, which was supposed to be one of the leading hospitals for this specific type of cancer. And so, I was being treated there.

The oncology department at the hospital I was going to in Naples ̶ and Naples isn’t very big, but it is very wealthy. For a hospital of that size and for who their patients are, which is mostly older wealthy people, it’s supposed to be a pretty good hospital for a community hospital, but they had no idea. Literally, it was…you look in their eyes and it’s they don’t know what to do.

Dr. von Gunten: So that was their reaction to you.
Yeah.

Dr. von Gunten: You saw surprise in their eyes, they didn’t know what to do with you. Did they not know what to do with the pain?
Well, I mean, with the right types of medicines, I guess anybody could do the right thing with the pain. I don’t think that…I think they could treat the pain; I think they were okay treating the pain, they just weren’t going to get any further than just that, treating the pain. And, you know, from my perspective, I originally, you know, I wanted more than that, especially in the beginning.

Dr. von Gunten: Sure.
And like I said, it was almost three hours to go to Tampa. That’s where I was getting my scans done, that’s where I was doing my lab work. Although they would do some lab work and we’d send it to Tampa and then base my appointments. I’d have five-minute doctor’s appointments that I drive six hours, because it was the closest facility and it was well worth doing, but needed to be done to get what I felt was the best care.

Dr. von Gunten: Sure.
And so, they were handling the nuts and bolts and really making the diagnosis and really were the ones that were the lead dogs. And then they would coordinate and allow ̶ one of the recommendations came from my oncologist who was very aware of this doctor, they were at the cutting edge on this guy that was ̶ is still my doctor, he trained under one of the guru’s of that world. And so, we felt very comfortable we were in the right hands.

Dr. von Gunten: I’m glad you got that care.
Yeah.

Dr. von Gunten: So, you got, you feel like you got state-of-the-art best possible cancer care at one of the best cancer hospitals really in the world.
Yes, especially for this form …

Dr. von Gunten: For this form of a rare cancer, that sort of sneaks up on you.
Correct.

Dr. von Gunten: So how do you see yourself now? You’ve had the best of care, you’re back here in Columbus, you’ve been hospitalized here at Kobacker House. How do you see things now?
What happened was, I was, through a friend of mine, put in touch with the director of…I think he would probably be in his position in Naples … At Avow.

Dr. von Gunten: What?
At Avow, it was called down there, and what a great…God sent him for me. I was in … not so good. He took the bull by the horns and got things done.

Dr. von Gunten: So, took the bull. The palliative care group, they’re in Naples, took the bull by the horns. You were in a pretty bad place. And what happened?
Well, he sat me down and discussed with me, through a friend’s introduction, what are hospices, I didn’t know what it was. This is what I knew about hospice…you had to be near the end and you have to abide by what at the time I considered stringent rules to fit into their plan, into their facility. And guess what? I didn’t think it was for me.

Dr. von Gunten: You didn’t fit?
No way. Two weeks before that I was working, I’m living on my own, driving. This is to give you a time frame, this is end of July? End of July. And so, the more I spoke to him and the more I saw that there was, for whatever reason, in my case, some give and take. Then he said, “Oh that’s not true.” You don’t have to do this or that, it’s not always true. Because I didn’t know about, he broke it down for me pretty good. I think they said at one point two months. You have to be within under two or three months. It doesn’t mean, you’re going to die within two or three months, but that has to be kind of the, you know, where you’re headed.

Dr. von Gunten: Yeah.
And really it’s first time I heard that number.

Dr. von Gunten: That had been sort of that concrete about … A short time.
Yeah, and I never asked, so I can’t say that it wasn’t, because I didn’t…nobody ever told me or they’re keeping it from me. Maybe part of my family may have been but, I never asked. I just thought I could beat this.

Dr. von Gunten:. So, now looking back, was that the right thing to do, for them to sit you down and be that direct?
They needed to.

Dr. von Gunten: They needed to.
Yeah, absolutely needed to.

Dr. von Gunten: Why did they need to?
Because, I think, it begins to allow your mind to wrap itself around where you’re at, and what you have in reality, and there’s nothing wrong with reality and making preparations. I have two small kids and, she’s responsible for me being here and being with the kids on a fairly regular basis.

Dr. von Gunten: So, the picture you’re giving me is because someone did sit you down and say, “This is reality …”
Right.

Dr. von Gunten: “What are you going to make of this time you have left?” It was that that really led to the two of you coming to a change in your relationship to deal with this, it led to the move back here to Columbus where you’ve been– you had been living before, am I hearing that right? So, the way you’re telling me makes me think this is a good thing, that you’re feeling like this is a good thing.
I knew I had to be here.

Dr. von Gunten: OK.
I didn’t think how, I didn’t know how. But God, I’m sure has a big part of this, and he’s decided that this is where …

Dr. von Gunten: So, this is like God’s intervention. God did these things, because they do sound sort of improbable to all of you.
When you start to put the pieces together and you look at the whole story, there’s no other way. She really was the one. (nods to wife)

Dr. von Gunten: Credit to you. I want to turn to symptoms. I know you were hospitalized here a week ago, because of nausea and vomiting.
Correct.

Dr. von Gunten: What was that like for you?
Well, You know, this care is so phenomenal. I have such a good…I feel so strong about how I have weekly nurse care, they come out to the house. I’m actually staying with my mother-in-law cause she’s home all the time and she can give me my medications and more. So, make sure I eat and actually putting on weight so that’s been a good thing.

Dr. von Gunten: Yeah. His mother-in-law’s happy.
Yeah, she’s the perfect person for that. And so, they have the 24 hours where and anytime I call and within 15 minutes like clockwork they’re calling me back and, “What’s the problem?” “Okay, this is what we need you to do. Take this, do this, take that,” or whatever it may be. And, “Call me back in an hour.”

Dr. von Gunten: That feels like a godsend.
It’s such a relief, it’s another person or people, a whole group of people being there.

Dr. von Gunten: So, you like that idea of somebody being there, you can call them …
Absolutely.

Dr. von Gunten: That gives you a sense of comfort?
Absolutely. You know, without that, I mean, that just makes such a big deal. My mother-in-law’s 77 years old. And I know she gets concerned as well as I that we’re putting too much on her plate. That we’re asking her to do too much.

Dr. von Gunten: You’re worried about being a burden on her.
Correct. But knowing that this resource is there puts her at ease as well.

Dr. von Gunten: You’re making it sound like, without this system, you wouldn’t be able to cope with your current situation.
It gives me the strength to do it and the ability to know that if it’s two o’clock in the morning on a Saturday night, then I don’t have to worry about not getting a hold of somebody, or getting a question answered. May be silly, you know, for me, nobody ever told me that obviously, they tell you the direct opposite. But, you know, I know my mother-in-law as she’s got more and more into this, because I’ve been at her home…first week in August? So as time’s going on and maybe some of the conditions, maybe certain days I wasn’t doing so well, I’m sure she gets a little scared and uptight.

Not only that, she also takes care of my father-in-law who has a short-term memory loss. You could probably explain what he has.

(wife) She’s running a hospital.

Dr. von Gunten: She’s running…. So, she’s running a hospital. I think that’s something that has broad concern when you ask people who are grandparents and then they actually become centers of caregiving for multiple generations. And particularly if people are ill, I can see why you’d be worried.
Yeah.

Dr. von Gunten: And you feel like this setup where the team that’s taking care of you, including on the phone and being there.. but you make it sound… they’re not doing it, you’re doing it. They’re giving you the confidence, am I hearing you, right?
Exactly, I have to be proactive and do it. If I’m not doing it, they’re not bending over backwards. Although they do, they called on a weekly basis because I have a nurse come out every week.

Dr. von Gunten: Yeah.
Regardless. And so. .. go ahead …

(wife) I was just going to say I think the program is amazing. I mean, Kevin has an oncologist here at The James that I’ve connected him with and I know that the nurse here calls the pharmacist, at that oncology office every Friday and checks in with her.

Dr. von Gunten: Right. So, keeping in touch with your oncologist, Dr. Saab over at the University …
(wife) I would say that before him, my mom and I wouldn’t be able to take care of him on our own without this program.

Dr. von Gunten: So, you wouldn’t be able to cope, you wouldn’t be able to do it without this program and allow you to live at home. What are you expecting going forward from here?
Well, for an odd reason I tend to, with these little…whether it’s pain, and usually, that’s what it is pain, or maybe vomiting, it’s usually what it’s been. And this is not recent, this has been going on for some time, that I need an adjustment in my medication. And I’m off feeling like a million dollars.

Dr. von Gunten: And you feel like something bad because I know that, the two episodes I’m aware of, you were really bad. You are really sick.
And that’s what’s interesting, because that’s when Dr. Mitchell down at Avow and hospice in Naples saw me.

Dr. von Gunten: Yeah.
And he saw me a week later and he couldn’t believe it.

Dr. von Gunten: You’re saying and I’m trying not to put words in your mouth, but you’re saying that with this care, this team care with knowing the right medicines, adjusting them when you need it, then you feel like a million bucks, right? And it sounds like that’s the goal. You like feeling like a million bucks.
Oh yeah, absolutely.

Dr. von Gunten: Yeah. And that’s one of the reasons I enjoy being in this field. I love being able to give the good drugs to have people feel like a million bucks.
And I take it for what it is. I realize that I’m maybe in a different situation than a lot of the people in the program because I fortunately have the ability to, for most of the time, take care of myself and the problems I deal with. You know, people laugh at…I’ve become much more extroverted.

Dr. von Gunten: You have.
I ask questions. And people will reach out. It’s amazing what they tell you. And I’ll be not able to sleep for this anxiety, and I’ll say to somebody who I know is stressed out, “What are you…do you ever have problems sleeping?” “Oh yeah, almost every night,” You know, well successful doctors, attorneys, whatever. What do you do? What do you do for it? I get up, get on the computer or I read a book and try to make myself tired so I then usually go to sleep. No, not always.

Then I ask somebody else and their problems were worse, and somebody else was coping with it better. And I said, you know, that’s one of the worst problems I have.

Dr. von Gunten: Sleeping? And I know … the anxiety.
And the anxiety becomes the … Last night might have been the worst night I’ve ever had.

Dr. von Gunten: I understood from the nurses that you were up pacing all night long.
Yeah. And it wasn’t cause of anything in particular. I’ve found out through a friend that’s had these issues in the past and they feel that it’s almost being anxious about getting anxiety. Maybe it’s almost like you’re feeling it’s coming on … and then …

Dr. von Gunten: Then it comes.
Yeah. And it comes. Because I’ve had gone weeks, no problem at all whatsoever, where I’ve kind of dealt with it. And then one night, I’ll be calling her at 11:30 or 12:00 o’clock at night.

Dr. von Gunten: You were saying before about, because you’ve experienced these, all these symptoms from the advanced cancer, that something about this has made you reach out to others and find out that others have similar problems. That’s brought you closer together.
Yeah.

Dr. von Gunten: You enjoy that sense of human interaction that you didn’t have before.
Absolutely. Absolutely. And, you know, I stopped believing the doctors. I almost put myself in a position where, okay, they say this, but I feel this way and I’m going with this.

Dr. von Gunten: Well, that’s what I was thinking. You said, down in Naples, they were saying, “Well, probably two months, but no one can ever really know,” but that was four months ago, five months ago? July, August, September, October, four months ago. And there are days when you feel like a million bucks. So, you think, “Well, what do they know?”
Yeah, and I mean…But I think way back, and you can probably have more information about this, but I think way back when it’s first started, they were timeframes put down way back in, right? Yeah. Yeah.

Dr. von Gunten: Well, this issue of talking out loud about death, that it might happen, but there’s uncertainty …
Sure.

Dr. von Gunten: And I think I want to bring us somewhat to the close of our interview because I’m so grateful for you spending this time. So, you’re in the best place to be able to advise doctors. What should they do about, when they’re taking care of people like you, with a serious illness that will lead to death? Because it’s on every doctor’s mind. How much should I say? How should I talk about it?
I think what you’re doing here…Because I think there’s probably a motto somewhere that, you know, four or five groups sit and deal all those fun things and sit down and determine what our themes going to be or our motto. But you guys do a phenomenal job of getting across that you want people comfortable. And that’s the difference, that’s the trade-off.

Do you want comfort? Or do you want to be mainstream chemo? Other sorts of pains and side effects? I went through all that for months and months, can’t even get an IV in me anymore. I mean, it’s, it’s a situation where…and I’ll be honest, I’m not 1,000% there yet. And I want to just say, “I don’t want to do any of that, and I just want to do this.” I think that’s where, you know, in talking to the nursing, I think that’s where most of the mindsets are for various reasons.

But at the same time, I have to keep my eyes open to somebody would approach me with something and some new, or something that really has been determined that, I’m going to say miracle drug, but just something that’s been newly tested. I don’t want to say a 100% that I’d rule that out and I know that would mean, in most cases, bye-bye hospice. I know Dr. Dunn in Florida jumped through hoops to keep me in the program somehow and I’m so grateful.

Dr. von Gunten: What I’m hearing you say is that you can live in this ambivalent place. You know the cancer is serious, you know that you’ll die of the cancer, you’re also hoping to live each day, feeling as much like a million bucks as you can.
I agree.

Dr. von Gunten: You want to deal with your relationship with your wife and your kids and your mother-in-law. If something comes along that might help you live better, you want to be open to that, but it doesn’t mean you…so all those things can live together in your head.
Yeah.

Dr. von Gunten: That was your saying.
I don’t want to feel like I’m on…I don’t think I’m on that roller coaster where you’re kind of here one day and there the other day, I mean, I’m here, you know, I am. But I still think that I have a lot of respect for the doctors, and I know the quality of work and what they’re known to do in this specific form. That I have to, at least, keep an open ear or partial open ear. It would be foolish not to, at least, hear what they say.

Dr. von Gunten: Right, but I’m hearing the message is that doctors like me should not be afraid to be open with you about all those elements. Rather than worry about putting you in one category, that either were treating the cancer or we’re making you comfortable, we’re open about the things we have or don’t have, being clear that no matter what, we want to keep you comfortable, no matter what we’re doing. Is that what I’m hearing?
Absolutely. You guys are doing that, that’s exactly what you’re doing.

Dr. von Gunten: And I think that’s a great place where we should probably stop here. Before we end, you do have this audience from doctors around the world. And one of the things this session and what we will talk about later is what’s the power of individual patients’ voices, but here’s your chance to speak to doctors from around the world. And they’re trying to do exactly what you’re describing for yourself in their own countries.
Great.

Dr. von Gunten: What advice do you have for them?
Well, I think the best thing that I’ve experienced is the honesty, for sure. And that may not be right for everybody. You know, there are people who are having influence and family members and distant relatives. For those people, it’s going to be hard, you know, for how many people, how many roadblocks you may have to overcome.

For other people, they’re uninformed and need to be informed and need to know that … there’s other ways to do this. And it’s not the holistic approach. It’s not the full-blown. “Oh well, you just do chemo and see if it works.” Because there are so many options out there.

Yeah. And so, I would say that I think you have to be honest, and you have to approach them with those options and let them know that they’re there and not hide them from them, because I think that’s what they’re looking for. They’re looking for you to tell them something that creeps through that door, where they don’t want you to know something about something else. And I know me as a person, if I get wind of that, that’s going to turn me off.

Dr. von Gunten: Okay.
You know? But the support groups that you offer, I think is got to be… It’s got to be well played in terms of the use of that and how, me speaking as a patient, how comfortable that makes me feel.

Dr. von Gunten: My last question before we end, it’s an old practice in medicine to interview and use a real patient in terms of teaching, it’s kind of fallen away. Some of the people that are here are probably absolutely horrified that I’m sitting here and talking to a real patient with cancer and we’re talking about death, dying, hope. Do you give chemo for hope all of that? What’s it been like for you sitting here and chatting with me?
Easy.

Dr. von Gunten: Easy?
Yeah. I had no problem speaking around. I think it’s helpful.

Dr. von Gunten: Helpful in what way?
Helpful to me.

Dr. von Gunten: Helpful to you? And how?
To get it out there.

Dr. von Gunten: To get it out there?
I think people don’t know.

Dr. von Gunten: People don’t know.
I don’t think there’s … a lot of the general public walking around that knows what hospice is, they may have heard it a few times, but I don’t really think they really know what it is. And I think if you get that out early enough, it doesn’t become as much as a shocker when they’re put in that position.

Dr. von Gunten: Well, I think that no one can make the case for it better than you. So, thank you so, so much for being willing to do this. Thank you for being willing to be here.
(wife) You’re welcome.

Dr. von Gunten: And they’re all…