Well, I have cancer. And so does Lisa Mitchell. We talk.

Unpleasant diagnosis but a good conversation. This week, I talk to Lisa Mitchell about being in the club no one wants to join.

Transcript

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Welcome to Locals, the podcast in which we talk to people who are, well, local. Today's episode is a conversation about cancer. I was recently diagnosed with prostate cancer, and I'll be talking to Lisa Mitchell, who has been diagnosed with bilary cancer. When you are diagnosed with cancer, you quickly learn of many others who are in your new club. And every conversation with a fellow club member leads you to one or three others. Wanting to connect with others who had advice and who would know what I was feeling led me to a phone conversation with Lisa. And after the call ended, I thought that something like our conversation might be helpful or informative for others to hear. Lisa agreed to be interviewed for locals, and here we are. I want to say that we didn't really clean up this episode. In it, you'll hear non sequiturs, truncated thoughts, sentences that jump tracks and become other sentences. That's because thinking about cancer and talking about cancer while you have cancer does not happen in straight lines. In either emotions or thoughts. So forgive me if some of the sentences in this conversation are confusing. I trust you'll get the sense of what's intended, and if not, what are you gonna do? Think less of me? You're not gonna do that. I've got cancer. You would feel terrible doing that. So you'll deal with it. Here's our conversation. Alright, you ready? As ready as we're gonna be. Yes. Alright, Lisa. Thank you for talking with me. We are here because you and I are in the cancer community. I have learned more recently than you, but you weren't diagnosed all that long ago. I thought it'd be a really wonderful thing because you and I had a pretty wonderful conversation on the phone. Uh, to have that conversation on the podcast. Can you talk about your journey into cancer? Thank you, Rand. And as you and I have talked, it's quite a journey that we we come to unaware and then denying and and not understanding. So it was last fall when just after routine blood work and I had an upset stomach, that my doctors followed the path and found out through more blood work and scans and pictures that I do have a mass, a tumor mass, a cancerous tumor. And I said to my doctor, why are you saying it's cancer? Do we know? And she said, Yes, we can tell. And from there, I remember thinking, I I don't even, this is not real. And I just went about a few hours of doing what I was going to do. I didn't even speak about it. My husband Dave and I just went off and did things. It was the weirdest thing, and to this day it sends chills because it's so surreal. And from there, the test happened rapidly, the diagnoses. It wasn't fun, but I have to tell you, and this is what I felt at the time, a lot of gratitude for all these things that were taking place that were moving along. I didn't have problems getting my diagnostic testing or an MRI or whatever I needed, a PET scan. When I went into the PET scan, I didn't want to be there. I was sick of it. And there's no reason that I should have been done at that point. And in walks the person that I know as the technician, somebody I knew well enough to give a hug. And so it was those moments where it's like, ah, okay, you've got this. It's gonna be okay. And you and I talked, it doesn't always feel like it's gonna be okay. Yeah. Yeah, and that was how long ago? That was um the the testing started in October. So we're now in May. It moved along so that I I called Fox Chase right away, and by the end of October Halloween, I was meeting with my doctor at Fox Chase. And you obviously like Fox Chase because that's where I am, thanks to the conversation you and I had. And and supported by another person who's a friend of mine who's a genetic uh counselor. She said Fox Chase is just the best, and they moved me in very quickly too. Oh, that's great. Well, mine was similar with some differences. I I was doing routine PSA tests, which every guy should do. And man, if you're listening and you haven't done a PSA test after 50 or whatever years, then you should really do it. Because um that's what put them on to me. So I had an MRI, and that led after quite a bit of work and nowhere near the ease of your what you just described. For me, it was it was hellish. But I've had eventually got the information I needed, and the diagnosis was clarified, and now I'm moving on to I think some really, really wonderful care at Fox Chase as well. I have the type of cancer that men have. I have prostate cancer, and it is a thing where people love saying, hopefully for good reason, most men die with it, few die of it. And that's uh statistically true. Emotionally, it's not necessarily true for you if you are in that position. You you described when you had that moment and you just couldn't believe it. I think that is normal because boy, I had it. I've been reading this book by Bessel Vanderkock. It's about how the body works with trauma and what happens when you have a traumatic event. Either you're threatened in however many ways, and it hits your ancient brain, the amygdala, and then at that moment it it everything freezes. It's just like it's like seeing a tiger. I'm gonna run at it screaming, I'm gonna run away from it, hope I'm fast, or I'm gonna fall down and pretend I'm dead. So that was where I was. I was just frozen. And what happened is, of course, I got my MRI result, and it s gave me some period scores, fours, threes and fours. So you go, okay, so I got that, and then of course, there's the internet. And then I went on to like, what does that mean? And then the phrase that'll be with me for the rest of my life was high probability of clinically significant cancer. And those are the words that wiped my brain, like yours. And in terms of what I just said about the brain, the amygdala, and how you would respond, that's where I was. But the tiger at that moment, couldn't tell if it was looking at me. I didn't know if it was going to move toward me or away, become something real or not real, and I was just frozen. So the difficulty I had is then from that moment, then I had large problems getting the next step to where the biopsy could be done and a plan of action could be made. So I just found myself for weeks stuck looking at this tiger, just not knowing if it's going to turn to me or not. So that was my gadinta on this. But what was really helpful to me were people like you. I spoke to friends who've had prostate cancer and men all over. You'd be amazed how many men have experienced this or are experiencing it. And so that was great. Because then all of a sudden you're not just stuck there, you're getting these other people who said, Yes, well, here's my score. And Gleason's score was such, and I had, you know, a three plus four, a four plus three, and so you start to live in these numbers, and people help you kind of navigate that. So I can understand where you met the person in the room that connected with you, and that that was something. Yeah, yeah, that that was one of the very meaningful moments during the diagnostic stage. And just listening to you, Rand, I'm just like, yes, I totally am hearing you. I think one of the things I would say is follow up with your annual visits, your blood work. You know, we're talking now some practical things, but it's so important because had my doctor not followed through, um, it wouldn't be like it is, possibly. My doctors, one of the things they're happy about is that I have a healthy liver that they can work with. Now, my cancer is not liver cancer, it's called calangiocarcinoma, um, which is of the bilary ducts, but they don't often get this chance to work with somebody who's healthy because they've declined so much, nobody ever diagnosed it, and there's it doesn't matter why, it just is that I was lucky to be diagnosed early, very early. I was not sick. So I looked up right away, and this is what I also would share is how we each do things differently. And for me, it was like the next morning. Okay, I didn't really like what I saw about my cancer. There's there's things that are not good as far as it could come back and longevity of life and things like that. But I looked up my cancer and started finding the doctors who are the specialists, and that that really helped me. So for me, I didn't really um come to grips with the word cancer, and I shared with you before I didn't say the word for a long time, but I didn't become immobilized. Instead, I was like, okay, this is a project, and it was very surreal. It was like I wasn't dealing with the subject, I was dealing with who are the people that I need to go to who can take care of this, and that's how I ended up at Fox Chase. And I would say there's so many good places now. Um, some of our friends, common friends, are at the University of Penn Med. Some people are at Sloan Kettering or Johns Hopkins. So you and I have learned a lot from our friends. And yay, the internet. That's the a good part of it, right? Because the information is out there. It can be really frightening. I early on felt, okay, how am I going to deal with this? Because it does scare you. But I wanted to enter this honestly with myself and clearly, and of course get the best information. So I I was driven by finding what is real here? What are the not just the numbers, but what is or the possibilities, and what am I I want to take it seriously, even with the statement of, yeah, most people don't die of it, people die with it. You know, but you live in the numbers differently when you have it. And so I did a lot of research, and with that came really hard emotions. Re fear, just fear like falling through a piece of i an icy lake. Sorry, stop me one minute. Um and then I work out of it, but you you read something, and then it just you open up to the possibility. A minute ago you said a sentence that was something like, what it's going to be possibly. You've ended the sentence with possibly. And I think that's where one lives. However, everybody's different. There's that feeling of possibly. Living the numbers differently. I was with a friend who had cancer, and he said, Oh, well, 90% of the people are fine. And others were in the room, I think, were quite buoyed by that. I hear the 10%. If you have the protects study, it goes, you know, 97% this. You hear the 3% because it is possible. And there's a veil that is taken from you. Oh, that's not me. And I've always been healthy, I've always felt my body with caring. And then you learn that no, that no, you are that person. It's like, you know, John Dunn's for whom the bell tolls, you know, tolls. It tolls for you, dude. But then what I found was the more I did it, I would get those highs of fear and lows of loss and sorrow, and I would even out onto this road that was balanced until the next change or problem. I was learning how to do the emotional journey of it. And as every time I did it, it was easier, it was the highs were less high, the lows were less low, and they came right on the smooth path more quickly. Nothing's easy. You know, I I just felt like I wanted to make that emotional journey honest with myself, and that I would have to learn skills I didn't have. So when you talk about looking things up, later that night I did look up this disease that I had, and and it said four to eight months, and I was like, oh my gosh, now remember who they normally get to work with. Very sick people, people who already have gone deep into this. And so one of the differences for me was then I didn't want to read more, and I I zeroed in on who are the professionals that take care of this that have seen this often. Not somebody that knows a little bit about it, but who who works with this disease? And so that helped me a lot. I then, in talking to people like you said, since then, other friends have been diagnosed with cancer, and I was having a discussion with one of my friends who was just diagnosed this year, say two months ago. So I'm six months into it, which is not that long, but I had a little more experience, and I was saying, you know, you might want to look at this place or that, and I don't want to push it on you. And she said, Yeah, I I just am not that I can't plan that right now. So each person brings to the table a different set of feelings and a different um how they want to deal with it. Like she said, I just really want to stay local if I can. And I understood that, and yet you just heard my story where I was like, Do we need to go to Texas or New York City? Yes. Well, happily, we're outside of Philly. It's about two and a half hour drive. So each person brings a different experience, background. It's been very interesting to me. Other people have said, no, we found out what the protocol would be for my husband's cancer, and we headed right to, and you know, some families go right to Johns Hopkins, you know, right to Penn Med. Yeah. It's been very interesting. I wonder if that's also partly a relationship with a medical doctor, that if you have that confidence, because what I found in my journey, there was difficulty, it was a lack of communication, it was some things that went wrong, it was uh the time it was going to be taken to be seen when I was living in that staring at the tiger. And uh you need you in those moments are so vulnerable and terrified, and you need uh that medical staff to see you, understand that, and do the things they are hopefully trained in to comfort, which means support you and give you some sense of okay, I don't have confidence, but I have confidence in you. And you you have to have that, I think. I I would imagine, again, data set of one. I I would imagine I don't know how you do it without that. I don't know. Yeah. That you really um have pointed something out that's been so important to me. When we arrived at Fox Chase and I met my doctor, he went over things and started to pencil scratch some notes and draw pictures for us, and he just at that point had so many ideas from his experience level of how to deal with this. He made me feel so comfortable and also confident. So when you get a doctor that that you can tell really knows his medical background, but also was so kind. He looked right at me, and I'll never forget this, said, This is nothing you did without me asking. Now we come forward, and he insisted that I have my first chemo treatments locally at Geisinger, and the doctor there that I chose worked with my doctor at Fox Chase. They they had studied together, didn't know each other, but again, that gave me confidence. They were both very caring, um, very personable with me and my husband. So recently we had the second scan. The first scan was not positive. My cancer was still growing after the first set of treatments. The doctor before the second scan said, I know this is hard because we've already been down a path that didn't work, but we're gonna have confidence that this will. And I didn't have that confidence, but this scan has worked out where the tumor is getting better, and and this doctor to be so understanding of my feelings as well as what I needed medically. Yeah, yeah. You feel like the sword of Damocles, you know, that sword that is suspended by a hair and it will fall or it will not. And any any like any of these meetings I have or diagnoses, then I I feel like I'm right under that sword. And the farther I go, the more I know what it is. And so now I I you know kind of a pretty good idea of uh I'm to the choices, not the oh my god, will this take me out? The question is more gonna be how will this be dealt with? Although, again, there's always that. Maybe, perhaps, you know. We live with that word. You sound like a wonderful doctor. Wonderful. I hope yours at Fox Chase is is also, I'm sure, I'm sure it'll be a good experience. I just feel very fortunate. I have to share that the nurses at both Geisinger and Fox Chase have been amazing. Wonderful. Um, Napper, where I got my chemical my chemo infusions, those nurses are are very caring and knowledgeable, and so it it went well. It wasn't successful, but it went well. Um and then at Fox Chase, the infusions for the chemo, again, the nurses are amazing. They are angels. May I ask for people who are a little bit behind where you are now in looking into chemo and treatment, what is there anything you would say to them now for them to prepare themselves mentally or emotionally or to know what's coming as a patient as opposed to a doctor? What I've learned so much, Rand, is that chemo is not something that's all the same. They told me right away I probably wouldn't lose my hair from my chemo. I probably wouldn't get real sick from my chemo. As opposed to 30 years ago, today they take care of you so that I haven't been nauseous. I haven't, again, lost my hair. Now, other people who have had it for a shorter period of time than myself, it's not been as easy. They they had their side effects have been, they lost their hair. But for me, it's been different side effects. And what I learned early on was don't look for something that you think might happen that's bad. Don't look for trouble. Listen to your doctors and allow them to give you a heads up. Hey, you may get some cold sensitivity and it might hurt. Please tell us, you know, or you'll be tired. But I think they intentionally didn't stress it too much because they said the human mind looks for it then. And if we tell you, they did not keep it from me, but they didn't say you're gonna be exhausted. Uh-huh. Because you'll look to be exhausted. Or they give us all the information kind of nonchalantly, um, not stressing too much, and then we go back and say, Oh, this is what I had, and and help them to know how we're dealing with the chemo, the side effects. For me, I started this chemo in March, so I'm a a few months into it. Every other week I get it. I'm exhausted a lot. Are you? Yeah. You mentioned steroids, then you mentioned there's it seems like there's an arc to your week. What is that heart? Yeah. And this, my my other friends have said the same thing. They give you steroids with your chemo for the nausea. So the day after chemo, we're all on this steroid high. And some people have shared how they can't sleep for the whole 24 hours. I've been pretty lucky. I've been able to sleep. But you kind of feel high, but I had no energy, if that makes sense, you know, so your mind's racing. And then it just drops off. And so the second, third day, it's not only tired, but what I've found is just being depressed about it for a bit. And that's been hard for me to deal with. Because I'm like, okay, Lisa, you know this cycle. So just be prepared and move on. That's your day to sleep. But then when you get sad, that that's hard for me to deal with. It's not been horrible, don't misunderstand me. It's just like, oh. Now it's taking another three, four days after that. And in the beginning, it was like two days, and I'd be back being able to do things again. You don't do a lot, but at least um take some walks, do some things that that are either fun or you just feel you want to do. But now it definitely takes longer. You and I've said this in our previous conversation, you know, I feel so fortunate for the health care I have access to. In this, I'm not concerned. Is this going to be there for me? I have access to top-fly people. There are others who are facing this who do not. Who just don't have that. That's cruel. Absolutely. You I think about this more and more often. Um, definitely even within our country, the people that don't, the people who are buying their insurance and it's not gonna cover everything, it's so sad. But then also lately I've just felt very sad for the idea that people in other countries might not even know they have this. Yes. And I and I know that's real. And you just said what I've been thinking a lot about lately, that mix of I I don't want this disease, but I'm grateful for being able to deal with it. There's there's a journey you're you're doing medically, there's a journey physically, there's a journey emotionally, and there's also, I think, your subconscious works on this when you're not thinking about it. You're working through it. I've had a few interesting dreams that come to me. Has have you s felt anything like that that you has it appeared in your dreams in any way? Not really in my dreams, but uh all of a sudden I'll think of some conversation from the far past and some um relationship with a person. I'm like, where did that come from? So I agree with you. We're definitely working on this and through this all the time, whether we're awake or not. And I guess I've noticed lately that when I'm fighting with some thought, initially it was that I would have cancer, now it's I know that the next step uh will be surgery or radiation or which kind of surgery. The not knowing how that's gonna be terrified me, and now I'm because I think my brain is is thinking about it even at night, I'm kind of working through like it'll be okay. But boy, Rand, that's really hard. I remember one person saying it's the unknown, isn't it? Yes, yes. That's what I was saying about the emotions too. You you kind of learn sort of to live in a new world. You learn to live in this world of these emotions and not knowing, and yeah, it is a new, it is a new world. I would add too, like then your body changes as you get a metaport, which people who know about this, it's kind of minor, but all of a sudden it's included in my body, or I have a hipotic pump that's inside under my skin. I know people have pacemakers and different things, and that's something to really come to grips with, seeing things like that inside your body, and being pretty open here, but it's just on top of everything else, then it's all these other things that happen to your body. The medicalization of your body and your life. This friend who's a genetic counselor was saying, in her experience, that's what she had such a hard time with that that was taking appointments and uh devices were just taking over her life, and that was so hard for her. Yes, I'd have a free week from chemo, and then I would have to have an appointment set up for a drain tube or a stent in a bilayer duct, and these are things that are just in addition to figuring out that you have cancer. Like, oh my. I had a dream, since I asked about dreams. I'll tell about a dream, and this was an amazing one. I had a few, um, but this one was I I was in a water, like a creek, it was like fishing creek. Our cat was in the water, and then I was looking at under these tree roots on the bank, these little worms started coming out, and they were like tiny little mini eel-like worms. And we had been up into the Hudson Valley and learned of these worms that come up, little eels come up from the Sargasso Sea, and so I think that's where it came from. But they started going into a cat, and I went, Oh, I don't want that. Can't I have to stop them? And they started growing bigger and bigger, and I tried to cut one, and then it was two of them. And then they were starting to go in me. And then our cat stood up out of the water, but it was no longer our cat. It was made completely of these writhing little eel-like worms. It was much larger, so it was like a leopard or a tiger. It was just looking at me. I didn't realize until I woke up that that was like that was like the tiger I'd been talking to you about. And that it was these little wormy things that were invading me, and it was about a week to two weeks later I saw a cancer cell, and Lisa, the cancer cell looked like the worms I was sitting. They were different color and they were smaller, but it was the same thing. If there was no like fur, there was no thing, it was just this shape made out of these moving things. Anyway, holy moly. Yeah. Who's worried about something getting into their body and proliferating and taking it over? I don't know. That's amazing. Yeah, that was a dream. So yeah, I it it works very deeply in this. How you were working through it and how you were um just processing the information. That's what we have to do. Yeah. You can't cut it, there's nothing I can do about it. That does speak to the fact that um we don't have control over this. And that's a lot for us to uh for me to deal with. Um I I don't really think I need control over everything in my life. It's very weird knowing there's something in there that you really can't see, and you can't do anything yourself about it other than follow some protocols that doctors and medicine are telling you. Yeah. And try to shave the odds in the way you can by behavior or or what you're doing, yeah. I mentioned how fortunate I feel for the medical care. Also, I'm very fortunate in the people like you and others I talk to. So there is a community of people out there who are local who are locals in the community of having cancer and living through the conversation you and I have been having. If I were to give advice to people, I would say that there are people out there who will talk to you, and I've never had anybody say, I can't do that, I can't. They are so welcoming to say, Yeah, I'll tell you my experience, and here's what I learned, and here's what it feels like. There's no like, you should feel different, you should be more positive, you should, it's really not gonna be a pro a problem. There's none of that. It just those aren't questions to me for people who experience this. There is just what is real and how do I live within all the possibilities? And people have helped me so much with that. Absolutely. The same here. My my friend and I were having a discussion, the one who was recently diagnosed, and we just started talking about things that we couldn't say to other people. Well, like, what do you think it will be like if we don't make it? And she was sharing her thoughts and I was sharing mine, and we started to laugh because we needed to unload those words. And we couldn't say that to friends and family, I mean, a little bit, but we were in a dark humor that we needed, and so you're absolutely right, but also just sharing um what we're going through, and because of the medicines we take, or for whatever reason, it's just really good to have be able to talk to somebody who says, yes, and that's okay. And yes, cancer's really tough, but you're tougher and I'm tougher, and we're gonna get through this. Even when it's hard, it's really good to have somebody to talk to. Yeah, it truly is, and there are so many people out there. You know, you had mentioned thinking that maybe you would form a group of people. And you had a great idea when we're talking that I think I may think a lot about this in terms of the podcast of just people telling their stories. Yes. Short stories, not full interviews like this, but just people who will tell their stories so that those who don't have the person next to them or don't have uh perhaps a family we're fortunate with will hear those voices because they do sustain as well as medical care, I believe. Absolutely. I think that's definitely one of the parts of this. Not only hearing other people, but being able to talk about how you're concerned for your caregiver, your spouse, whoever it is that's walking with you. It's not just being concerned about ourselves, but we watch other people going through this with their emotions or um their actual physical helping us. It's a lot, Rand. It's a lot. It is the whole thing is a a pot of a lot of different emotions and needs and things that are happening to us. It's a real mix. It's quite a boat to be in with all of these different people. But I agree with you, and I did say to you that I thought, hmm, I've been thinking lately because I kind of came to a point where I was like, okay, now I'm six months into this and and I know I still have a ways to go. And of course, you what you just said, we don't know how long we have to, you know, we're going to be dealing with this. Anyway, I was like, so what do I do with what I'm learning and this experience? And that's when I said maybe there should be a support group. And I shared with you the idea came when Dave and I go to Philadelphia area, we stay at Hope Lodge, which is a cancer center that you can stay for free. I think similar to Ronald McDonald House. And so we're staying there and we're having this meal. These volunteer organizations will bring in a meal during the weekdays. And so we're having this meal with the group of patients and the volunteers, and this one group of women were amazing. They were from a local church, and they would share their story here. All of these women were cancer survivors, and they were sharing their stories, a few of them. And and it just sent chills at me, Ryan. So I'm I'm feeling this emotionally. And in talking to them then at our table, one-on-one, I learned that they have this support group that one of the women just said, What should I do with this experience? And they started this group at their church, and it's gotten pretty large where they support one another and other people. Like you said, somebody's new coming into this. They can be supported with somebody who's going through it. And that's when we stay at the lodge, that's one of the benefits is being with other people who are going through something similar, but also a different kind of cancer. Maybe it's been 11 years they've been going through it, or maybe they've been staying at the lodge for six months. Like, that's quite amazing. That is. Wow. Well, that's a wonderful idea. If it happens, it'll be a wonderful thing. And if it doesn't, it still exists with people who will answer the phone. Is there anything else you would think of adding to our conversation? No, I just thank you for inviting me because I think this is important. I do too. Well, thank you so much, Lisa. And we'll continue to talk. Thank you, Rand. And that's it for this week's locals, where we talk to people who are local. Join us next week for a conversation with local Abby Morrison. Have a nice week. And guys, get those PSA levels checked.