Facing the End of Life: A Conversation between a Patient and her Doctor

Transcript for Podcast

[0:00:00]

Dr. Diane Reidy-Lagunes:  It was summer of 2017, a 26–year–old witty recent college grad is working as a restaurant manager and she noticed that she's losing weight without trying. It must be stress, she thinks. She then developed severe abdominal pain and goes to the emergency room thinking that she has a GI bug. Suddenly, she's an emergency surgery for stage IV colon cancer. No family history, never smoked, did everything right in life. This is how cancer hits and her world turns upside down. For the past three years, Christine has endured three major surgeries, three years of toxic chemo and grueling radiation.

She fought and fought and fought and the cancer kept fighting back. Today, we hear the story from the voice of our courageous Christine. She's one of my dearest patients. Recently, we had to make the hardest decision possible, to stop all therapy. The side effects of the chemo were outweighing the benefits and they were just making things worse. When do we say that it's time to stop therapy and switch to what's known as best supportive care, how do we know when it's time?  Let's talk about it. Christine is here with me today via Zoom from her home in Connecticut. Hello Christine and welcome to the show.

[0:01:23]

Christine:  Thank you for having me.

[0:01:24]

Dr. Diane:  So I want to start off by saying, how are you?

[0:01:28]

Christine:  Feeling okay, yeah. Some days are better than others, always nice to get a sunny day.

[0:01:35]

Dr. Diane:  Yeah. Are you afraid?

[0:01:38]

Christine:  Not really afraid of dying, I'm afraid of what happens between now and then. You know, they don't make it easy to die, you have to like – you're in the hospital and they're telling you that that it's time to switch to hospice and then they are telling you, “Why don't you do some research online and tell us what you think.” And you're sitting in a hospital bed in pain going, “What are you talking about?”  Like there's too many choices, I don't understand the choices and I think that was the very scary part because it really feels like, “Oh my God, I am really out here floating like what am I supposed to do?”

[0:02:15]

Dr. Diane:  That's right and you're not alone in that. The complexity is you know it gets so challenging sometimes to make sure that we control your symptoms and we promise you we are going to do that, but then we want to do certain things on hospice that we can't do. So then people say, “Oh no, you got to go to palliative care,” but then palliative care is one thing in one state and one thing in another.

[0:02:31]

Christine:  That is so confusing and I think that was – that's been the scariest part so far. Not the, you know, I am going to die, it’s what happens between where I am now which is extreme amounts of discomfort and pain all the time to – to get to that point of maybe I will get another few good weeks where I don't feel that way.

[0:02:55]

Dr. Diane:  Yes.

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Christine:  So I think that's the scariest part personally.

[0:02:59]

Dr. Diane:  And you've had hospice come to the home. People get very scared about that, they think that like hospice is like the Grim Reaper, like here we are. Can you tell us a little bit about that and what it was like when they came?

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Christine:  It’s really not that scary, it's just kind of like meeting with any other doctor or nurse, you're just doing at your house.

[0:03:17]

Dr. Diane:  Yeah.

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Christine:  They do not come dressed like the Grim Reaper. Everybody is really nice and they – you can tell that their entire job identity revolves around trying to help you feel better and trying to help you manage those symptoms and being that supportive care that maybe your family needs as much as you need, because you know, nobody goes through this alone or at least I'm lucky enough not to go through it alone.

[0:03:45]

Dr. Diane:  Thanks, so I think that’s a really important point to emphasize that we always want to make sure that the patient is at the forefront, but they're not the only ones that are affected. I want to take a step back in time, to just understand a little bit of you and who you are.

[0:03:59]

Christine:  Okay.

[0:04:00]

Dr. Diane:  Four months ago, you gave one of the most powerful speeches at the Cycle for Survival Event. There were hundreds of people that were roaring and cheering you on.

[0:04:12] [People cheering].

It’s been quite wonderful years, no one thought I would see 27, but here I am at 28, working, living and rolling. [Crowd cheers] Even though I am not yet cancer free, although that would be pretty cool, I would be one of the lucky patient because of everyone riding in my corner. [Crowd cheers].

[0:04:40]

Christine:  What a cool venue, what a cool event, what a cool way to get the word out that cancer doesn't just affect, you know 50 plus especially, colon cancer. To have so many people be able to relate to you and relate to what you’re saying to basically a room full of strangers is something I've never experienced before. It was just overwhelming, the overwhelming support.

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Dr. Diane:  You had ‘Team Christine’ everywhere you looked. Your –.

[0:05:08]

Christine:  I was very lucky.

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Dr. Diane: Tell us a little bit about the role that the caregivers provided and particularly your family since they really never left your side outside the COVID restriction.

[0:05:20]

Christine:  People don't – don’t realize that the simple act of having somebody sitting there with you while you're getting it, sometimes it’s all it takes to make it a little less terrible, little more endurable if you know what I mean. So I used to come with a passé, I'm so lucky I have a tiny family, I only have six cousins of two aunts and an uncle. And they’re just so very supportive of everything, the best way they know how to be supportive is to show up, so there they are. Even after the COVID restrictions, I'm so lucky I have so many nurses in Westchester that by then I have formed such a bond with. One in particular who Dr. Reidy knows extremely well, because she stopped, you know, emailing and just went for the texting after a while.

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Dr. Diane:  Tell us about Stenzi.

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Christine:  Mary Stenzi, it’s my nurse in Westchester. I call her mine even though technically she is everybody’s nurse. And I have to tell you, the first time I met her she scared me half to death, because she is a little intimidating, in a good way. She’s a little intimidating. But she just, you know, knocked my socks off and just really added to that level of personal care that I feel like I got from so, so many of the nurses in Westchester. And never really felt alone even when I wasn’t allowed to have visitors.

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Dr. Diane:  Do you worry about all those caregivers that report at team Christine moving forward?

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Christine:  What do you mean?

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Dr. Diane:  Well just, you know this is, this is about you and – and what happens next but very often there's feelings of worry or guilt or other things as it relates to your parents, Caroline, your sister that is.

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Christine:  I worry about what's going to happen to them when I am gone. I don't want them to, you know, not be able to move forward or be, you know, stopping some kind of weird place, because of what happened to me. But I also feel like those that have gone through every step of the way, understand that there isn't anything left to do and that there isn't any fight left.

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Dr. Diane:  Yeah. And I think you know it's important for everyone to understand how much a part of your care they were. Everybody is driving in an hour and half, sometimes longer to get to the hospital and I think those are the painful parts of cancer that we don't often talk about, you know.

[0:08:01]

Christine:  And when I think that people who – and I have experienced this with my own friends, people who don't see it up close enough, just kind of think, “Oh you have been sick, oh you just haven't felt that well.”  That's not really what I'm saying to you, like I know you think I'm strong and I can fight through anything. I wish to God that were true, but it doesn't really work like that. You know you give it as much as you can obviously and you want to keep fighting but at the end of the day it's not really under your control.

[0:08:36]

Dr. Diane:  Did you think it was a mutual decision when we did decide to stop chemo and is there any advice that you would give other patients?

[0:08:43]

Christine:  I think that the – the key to me is being open and honest from the beginning, don't wait till it's too late and too uncomfortable to have those conversations, because that’s when it boils up to a point where you as a patient might not be able to face it and then I think it does become an oncologist’s decision. And that's not really what you want, it's your body, you want to make the decision yourself. And I really feel like we were open enough from the beginning that by the time we got to this point, it was something we were sort of both saying, “I don’t want to go [Indiscernible] [00:09:18] the treatment,” and she's telling me that that's okay which she’s never me before. So I feel like we're at that same page and we got there together. But I think that's because we were open and honest with our communication about it from the beginning.

Dr. Reidy, if I can ask you a question and put you in the hot seat for a minute, what’s it like for you when you have to have those conversations with patients and you are talking with your patients about moving on to palliative or hospice care and knowing that there's not going to be a comeback from there?

[0:09:56]

Dr. Diane:  Well, I mean it's certainly the hardest part of the job, you know every one of us on oncology, nurses, social workers, surgeons, radiation oncologists, we're all in it for the patients and their families with the ultimate goal of cure.

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Christine:  Right.

[0:10:12]

Dr. Diane:  And when we can't get there, sometimes we feel guilty, sometimes we feel like we didn't do enough, but it's also a tremendous privilege to be able to be on this hardest part of your journey, most especially for family like yours. I mean your parents and sister and you, you know we've become almost part of your family. And so although it's challenging and sad, it's also an enormous honor.

[0:10:43]

Christine:  Right.

[0:10:44]

Dr. Diane:  So we carry that very closely and I think that this is the part that it will also be a reminder that we got to get back to the lab, get back to the trials and constantly fight for the Christines of tomorrow. Okay, here is a hard question. What could I have done differently as an oncologist? I know we all have blind spots as cancer docs and looking back now?

[0:11:12]

Christine:  I feel like the only times I've really wanted more from you as an oncologist is when I like gone off to do other treatments, like when I went off to radiation for five weeks and we basically didn't speak. I know it was like the height of COVID and things were like insane, but even just a text like, “Hey I'm thinking about you, hey,” like I think that's one of the biggest things that for me, I would have appreciated.

[0:11:42]

Dr. Diane:  No, I mean I think you are right on. I think that we often have what we call team care where you may be getting a surgery, so your surgeons, the quarterback or you may be getting radiations or your radiation oncologist is a quarterback, and so we think, oh somebody else is taking care of you right now but –.

[0:11:59]

Christine:  I didn’t have a huge expectation, I didn’t need you to be calling me every day or–.

[0:12:02]

Dr. Diane:  I get it.

[0:12:03]

Christine:  –texting me every day, it was like a once a week like “Hey I’m still here, I know it's been rough, hang in there.”

[0:12:10]

Dr. Diane:  Right.

[0:12:11]

Christine:  You know those little types of things would have been sufficient, for me at least.

[0:12:15]

Dr. Diane:  I totally hear that and often like our nurse maybe, the nurse on the team may be doing it, but it may be different so I get it.

[0:12:23]

Christine:  You know, it is different, you know, I – I love your nursing team obviously, Angela is my girl. I love your – your team in general and she was telling me she was talking to you and I believed her, yeah. But it still would have been nice to get that little bit of the, “Hey I'm still here, I promise.”

[0:12:43]

Dr. Diane:  Yeah, I get it. What’s the hardest part of all of this?

[0:12:45]

Christine:  I feel like the hardest part is finding a way to not let it define you, while also finding a way little whatever is left as your time. Like, yes my last few years have been very defined by cancer, but I am not defined by cancer. I mean to be honest, every day is different. Today I woke up in pain, some days I don't, some days I wake up and I'm like, “Oh, I had a good night.” Some days I wake up and go “Oh, I had a bad night, I didn’t sleep well, everything hurts and–.” So I think it’s, you know, for me right now it’s taking it day-by-day and just starting to work with the hospice team and what they can help, offer me symptom wise, so that hopefully I have more good days than bad days. And it's coming to the realization that there will be fewer days than I expected, but that's okay.

[0:13:50]

Dr. Diane:  How would like the world to know about Christine Cohen?

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Christine:  Oh gosh, just that I hope that people put in situations like mine can focus on finding their way through with grace and poise and finding whatever bit of happiness pushes you through. And for me, it was getting to go so many places and seeing so many things that I didn't think I'd get to do. That's what I would like the world to know that you can find ways to make a cancer diagnosis something more than just a bomb shelter ruined your life, so to speak. It can be something more than that and I hope they can find that.

[0:14:36]

Dr. Diane:  Thank you.

[0:14:37]

Christine:  Thank you.

[0:14:38]

Dr. Diane:  For sharing your story and your journey, not only for our – for our team that adores you so much, but for so many that are on similar journeys. And sharing it is such a courageous act, so we're very grateful.

[0:14:53]

Christine:  No and thank you for being you, because I’m not sure if I would have made it quite as long without you.

[0:15:02]

Dr. Diane:  Christine died eight days after we did this interview. Her parents spoke to me on how important it was to share her end of life experience on this podcast. She hoped to help others that may be in similar shoes. Our MSK chaplain, Brian Kelly who shared a very special bond with Christine gave the eulogy at the graveyard service. It was a clear, blue, beautiful summer day. He spoke of meetings with Christine when he told her the Jesuit Theologian, Pierre Teilhard de Chardin had once written, “We are not human beings having a spiritual experience, we are spiritual beings having a human experience.” Christine loved that idea because she acknowledged her struggle had been the ultimate in human experiences.

She experienced ongoing cycles of fear and doubt, hope and courage, faith and love. One day while Chaplain Brian was visiting her, she sat up in her hospital bed with a wicked grin and told him quite firmly, “I'm going to heaven you know, all cancer patients do.”  He not only fully agreed, but was counting on her to watch over him when he arrived. He ended the service by saying Christine is no longer where she was before, she is now wherever we are. I can tell you I certainly feel that and she's certainly in my heart. Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center.

For more information or to send us any questions you may have, please visit mskcc.org/podcast.  Help other people find this helpful resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. These episodes are for you, but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I am Dr. Diane Reidy-Lagunes, onward and upward.

[Audio Ends] [00:17:08]