1: The Diagnosis (aka WTF?!??!!)

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Speaker 1: I'm just a fool way fearing stranger. Hey, Kyle, I saw you called. I had left my phone in the car when I ran in the half to get something in the car for another fifteen minutes and then I'll be at the eye doctor. So anyway, call me back. Love you buying o anger in that bride words to which I go, Welcome to death, grief and other shit we don't discuss. I'm Kyle McMahon. I lost my mom Joanne to pancreatic cancer just one year ago, and the pain that I've experienced is indescribable. As I looked for resources to help me get through and to find others talking about what they were going through, I found that the options were rather limited. I want this series to be the show that I was looking for for me, for you. We all have or will have to face those often unbearable emotions of losing someone we love, yet we don't really ever want to talk about it. Far too many of us push those feelings down deeper, nearly paralyzing ourselves from that pain. But me, I have to talk about it. I have to process this. I have so many questions that I need answers to and I want you to join me on this quest as I travel around the country talking to the foremost experts or nearly every stage of death and dying and everything that comes with that, whether we even realize it or not. I hope that there's healing in my future, and I hope there's healing in your future too, And together through this process, we can learn to take that first step to move forward in our loved one's honor. And I believe that that first step is simply talking about death, grief and other shit we don't discuss. It's cancer. The doctor said those words to me and my dad at the desk of a busy nurses station at the hospital, just thirty minutes or so after my mom's procedure had finished. Excuse me what, the doctor replied, in the most extreme, matter of fact way that I could imagine. I'm sorry, but your mom has cancer. It is small, but it is cancer. Although there are some options that we can look at, and there's chemo and raining. I couldn't breathe. I had to escape. The noise from the room felt like it had gone completely silent. It was like the higher world stopped. I felt like I was in slow motion. This had to be a dream. There was no way this could be real. This couldn't be happening, not to my mom, this was an impossibility. I told my dad i'd be back, and I ran out the double doors and immediately fell to the floor, wailing at the top of my lungs. I was screaming no, over and over and over again from the cold floor, helpless, alone and with nowhere to go, because the one person that would have made this better in any other situation was currently in a hospital bed a hundred feet away, still waking up from anesthesia. And here I am alone, hysterical, on the ground in the middle of a hospital wing. My vision began to darken, almost like I had entered a tunnel. The noises of a large, busy hospital all went silent in my ears. My hands were tingling, and I felt like I had to sleep. And then, like an angel, a kind nurse came up, and she helped me get up, and she brought me to the closest door, which she opened. Let's go in here, she said. She brought me inside and sat me down and looked me straight in the eyes, telling me to just breathe. But I couldn't. I couldn't just breathe. I couldn't stop crying. I couldn't stop screaming that this was impossible. This is my mom, This is my mom, This is my mom. She hugged me, and she calmly repeated, just breathe. Feeling like I was seconds away from passing out, and through tears that were gushing out like a fawcet, I managed to tell her that my mom was just diagnosed with pancreatic cancer. I was barely intelligible as I just let out a total stream of consciousness. This can't be right. She doesn't drink, she hasn't had a drink a decade. She hasn't even had a cigarette since before that. She's healthy, she's fit, she eats perfectly. She's so active, she's so full of life. This is wrong, this diagnosis is wrong. It can't be right. I can't do this without her. I need her. I need my mom. The nurse found a chance to finally step in and she said, listen to me with the warmest tone. My father was diagnosed with cancer when I was about your age. They said he wouldn't make it past a few years. And he's alive today. And I became a nurse because of it. I wanted to help people like my dad and your mom, and that's why I'm here. And there are far more treatments available today than there were even then. This is just a diagnosis. She repeated it again, This is just a diagnosis. I don't really remember the details of the rest of the conversation because there's just a fog around everything that was happening, but I know after another twenty minutes or so she had talked me off the ledge of insanity. I was finally breathing semi normally, and she was asking me how I got to the hospital. The control freak that I am, of course, had driven myself and my car was parked in the main parking garage. She said, you need someone to pick you up. Do you have someone you can call? Of course, I opened my mouth to say my mom, but I remembered and stopped myself from that instinctual response that I had given countless times throughout my life. Yeah, I can call my aunts. She said, if you're comfortable enough to leave, why don't you call your aunts and have them drive you home. I will. I want to go outside and call She said, you're not driving right, No, I assured her, I just need to get outside. I need air, I need to breathe. I gave her a hug and thanked her profusely for her kindness and her help. I remember the look in her eyes, worry, sadness. She had been down this before, And though I remembered that look in her eyes, I so wish that I could remember her name. She helped me in one of the darkest and scariest moments of my life, and the only word I can think to call her as angel. Whether it was the universe or God or just happenstance, that angel was crossing that hallway intersection at that exact time when I needed someone to intervene, and she did. I left the room and tried to remember the directions she gave me to get outside. It was like a labyrinth in that hospital, filled with endless hallways and scurrying nurses and doctors and patients. I was doing everything I could not to break down again. I concentrated on the signs on the wall, but it felt like they were in another language. I couldn't concentrate on them or anything, and that just diagnosis kept ringing through my head and this was going on while the directions were racing through my mind so I could remember and I could get out of here. I needed to get out of here. I needed air, I needed to breathe was it left and then right? My mom has cancer? No? No, it was left, then left, then right? My mom has cancer. Kyle, hurry, you need to call Aunt Kathy. Just get outside. Mom has cancer. Just keep walking, Mom has cancer. Just get outside. I told myself, just find the exit and get outside. I quickly walked by people on their way to their own doctor's appointments or to visit loved ones, and I wanted to scream, my mom has cancer. My mom has cancer. You're getting your risk checked out, and my mom has cancer. I wanted all of the doctors in the hospital to come together immediately and fix this right now. Fix my mom, Take kiss out from her, Take this cancer away. Cancer something you heard on the news. Cancer something that happened to others. It's not something that happened to me. It's not something that happened to mom, but it did. Finally I got outside and I immediately called my Aunt Kathy. While I began running to the parking garage. Aunt Kathie of course, had been waiting anxiously for the results of her sister's test. Hello, she said, and I could hear the nervousness in her voice, and I wanted to fluff it up for her. But all I could come with is it's cancer. I began hysterically crying once again, as I made it to the door of my car, got in and slammed the door shut again. I don't remember so many specifics of that conversation, but I remember Aunt Kathy eventually saying that my Aunt Kim will come and get me. Aunt Kathy stayed on the phone with me the entire time until Kim arrived and took me home. The events at that hospital replayed over and over and over and over in my mind, and the anxiety was quickly crushing me. How could they give such a horrible diagnosis in a room with a wall made out of fucking sheets? How could a doctor just so casually tell a family with a lifetime of love and happiness that they now have been cursed with an ailment that has a nine percent survival rate of five years. Doesn't he fucking care? Does he realize this is my mom he's talking about, and that she means the world to me? Does he not understand what the hell he just told us? Does he not understand that he has broken up my entire world with just two words. My mind wouldn't stop racing, and I'm not the type of person who can deal with that for too long. So I immediately started googling pancreatic cancer, and as you can probably guess, it was not good. Nine percent survival rate, painful treatment, resisted nine percent survival rate, worse kind of cancer, hardest to treat, nine percent survival rate, poor prognosis, incurable nine percent survival rate, months to live, horrible death nine percent survival rate. The tightness in my chest intensified, and once again I began crying. It's all I could do. And then I suddenly felt this deep darkness starting to come over me. I'm not sure I can do this. I'm not sure that I have what it takes to make it through this. Not with my mom. This is not happening with my mom. It's not happening to my mom. It's not happening to me. This is a dream. It cannot be true. The blackness continued to creep in, slowly but surely, seeping into my brain, my mind, thoughts turning to nothingness, sorrow, a low depression. My old friend. My phone rang, snapping me out of this trance. It was Mom, Her and Dad were on the way home, and she wanted to talk to me and make sure I was okay. Imagine that she's just diagnosed with pancreatic cancer and she wants to make sure that I am okay. And that's the way she was. She sounded so strong, almost confident. Even she told me that we'll get through this. And then I could hear fighting back tears, and I was fighting back mine because I wanted her to know that I was going to make this better. I was going to get this fixed. I was going to do everything that I could to get this cancer her out of her. We both were too raw at that point and realized without even saying it, that it was just too much right now to talk about it so soon. So we're all so she put me on speaker so Dad could give me some more details on the diagnosis. The tumors extremely small, he said, stage one. There are many options for treatment, and there's multiple paths we can take, and we're meeting with a specialist in a couple of weeks and then once again, I don't remember the rest of the conversation. It's just a fog. I do know that I agreed to go over my parents. I wanted to be with her. I needed to be with her. I needed to give her the biggest hug and the biggest kiss on the cheek and tell her how much I love her, how much she means to me, and how incredible of a mom she is. And I bet she needed that too. So we made the arrangements and got off the phone, and I returned to doing what I do best, obsessing and trying to fix things. So I hopped back on Google, but this time I added stage one to my search. I found an article about pancreatic cancer staging from a site named pancan dot org, the Pancreatic Cancer Action Network. I read the article, trying to control the anxiety from getting any worse and trying to abate the darkness from creeping back in. After I finished the article, I saw that pancan had a phone number listed, so of course I immediately called them up. I was going to get the best of the best for my mom. I'm going to have them tell me everything that they know, they need to know how special of a mom she is, how special of a sister she is, how special of a wife, of a best friend, of a daughter, of a person, of a neighbor. They need to know how special that my mom is. And they really need to know how special she is to me, that it's my mom, Because when they do, when they realize just how special of a person she is, just how special my mom is to me, then they're going to open that secret locked door and give me the cure. They're going to cure her pancreatic cancer, and I Am going to be the one to make it happen. Just you watch. The days following my mom's diagnosis were incredibly tough. I was having anxiety all of the time, and the depression had kicked in. The thought of my mom's suffering was too tough to swallow. The thought of losing my mom was unthinkable. In my attempt to break up that vicious cycle, I would spend hours a day searching for everything I could relating to pancreatic cancer. I'd read re search papers, I looked up evidence of natural treatments and specialized treatments. I'd read up on different surgeries and the various treatment options available. I looked into clinical trials and research the best doctors in the world. I remember saying to myself, if I have to call them up and beg them to come see my mom, I will. If I have to get millions of dollars to get her the very best, somehow, I will. I'd scour Twitter for hours on end looking for pancreatic cancer specialists and I DM them, asking them for whatever the latest in their research was. I'd even gone so far as to reach out to research scientists directly to get information from their studies that I could give to my mom's oncology team. But with every tap of the enter key for a new search, that nine percent survival rate would pop up again, and immediately that anxiety attack would hit like a ton of bricks. But I couldn't just sit back and do nothing. It's not in my nature in general to just do nothing, and I certainly wouldn't do nothing with my own mom. I needed to help save my mom's life. In the meantime, Mom and Dad had met with a specialist, an oncology surgeon who specialized in pancreatic cancer. He had just transferred from one of the best pancreatic research hospitals in the country, to the Helen F. Graham Cancer Center and Research Institute at Christiana Care Hospital System, just ten minutes away from my parents house. I took that as a sign from God or the universe or fate, or whatever you choose to call it, that God's got us. The tumor was small, so small, in fact, that it was a distinct possibility that they would be able to surgically remove it. That small bit of news gave me so much hope. This was it. I knew she'd overcome this. That's what I told myself anyway, that this was God giving us a sign that this was going to be okay. It had to be okay. There was not a timeline I could imagine that my mom could be taken away from me, so I knew that this was God proving to me that we would in fact be okay. I had always had a very close relationship with mom. Mom and I had pretty much grown up together. Dad was in the military and was often stationed overseas, but they had decided that it was best for me to have a stable environment, attending one school and be surrounded by our family and friends, and incredibly they made it work. The divorce rate for the general population is over fifty percent. The divorce rate for the military population is even higher. But through love and compromise and understanding, they made it work. Mom would hold down the fort while Dad was away and take care of everything on the home front, and would make it exciting to talk to Dad when he would call, or when we would call him, and we'd make cookies for him. And they just made it work. Not only did they make it work, but nearly forty years into it, they were in love as the day that they married. Dad had become such an incredible support system for Mom through these turbulent times. While Mom was typically the centered one keeping everything running smoothly at home while Dad was away for his deployments, Dad was now the centered one navigating the unknown waters of his wife's cancer diagnosis. His decades at the highest levels of military leadership had suddenly become extremely personal. In fact, his decades at the highest levels of military leadership made him the perfect person to help her take this on. As the months went by, Dad continued keeping on top of Mom's growing list of appointments. A cancer diagnosis is a roller coaster ride. I'd get that call from Mom or Dad after an appointment and there would be the tiniest bit of good news and the anxiety would stop. And then another appointment would have a small setback and I'd be crippled in bed for days. It was a constant back and forth, sometimes taking four steps forward and sometimes taking three steps back. Through it all, I focused on Mom. I spent as much time with her as I could. I was raised by my parents to just drop on in unannounced without a thought. Now I was intentionally making time to come and spend with her. This wasn't just mindlessly stopping by my parents' house to find a pair of shoes I'd been looking for. This was mindfully making time to spend just with her. Sometimes I'd leave the house after hanging out with her, and I would just sob over the thought that one day she won't be here. I guess we all grapple with that thought at some point in our lives. But this was far too soon. I'm way too young to lose the closest person to me in the entire world, the one that had never given up on me, the one that showed true, unconditional love. This kind, sweet woman who wore her heart on her sleeves and would give the shirt off her back to anyone in need, and now she's facing death. Over the next few months, our extremely close family became even closer, but the pandemic certainly didn't make that easy. As Mom started chemotherapy, it became imperative that she not gets sick. That made a really horrible situation even more horrible. Instead of our Sunday barbecue dinners together at my parents table, we worked it out where I'd sit on their back deck while they sat at the kitchen table, and we'd talked through the screen door. We found ways to make the horrible a little less horrible. In any normal circumstance, as normal as having cancer can be. My mom's loving group of close friends would be taking her to chemotherapy, but COVID changed that too. In fact, it got so bad with COVID cases that at one point even Dad wasn't allowed to go in with her to chemo. Can you imagine that, having chemotherapy fighting for your life and you have to get treatment by yourself. But Mom's a warrior and she worked through it anyway. When Mom was about to start one particular course of chemotherapy treatment that often caused haror loss. Her and I went to a stylus together so she could try on different wigs. We laughed so hard as my black haired mom tried on a fiery red wig, and then a blind seventies bob, and then a long, luxurious brown one. These moments are ones that I wish we didn't have to go through, but I'm glad that we were able to go through together, just finding moments of normalcy in a situation that's anything but normal. As we went through the next few months, I was seriously battling some dark thoughts. It really had turned into a situational depression. I'd go from beaming at any ounce of good news today's I didn't want to get out of bed, and to be honest, quite a few days I didn't. Mom was having a great day. I'm sky high. Mom wasn't feeling well. Neither was I. I started binging shows like My Six Hundred Pound Life and Hoarders. Something about watching the desperation and pain of others made me feel comfort, like there are people out there suffering just like I was. Me whose schedule was always booked and I was always on the go, was now finding myself increasingly confined to my dark bedroom, binging shows about people who had locked their trauma away into unnavigable hordes of stuff. Throughout Mom's nearly three year cancer journey, it was this regular back and forth of fighting off my own mental demons while feeling personally responsible for keeping Mom's physical ones away. There were some good things too. Holidays became more important to me. Our first Christmas after her diagnosis, I dressed up in a pink bunny outfit and went to my parents' house Christmas morning. Mom couldn't stop laughing. And that's exactly why I did it. I wanted to create as many memories as I could. I wanted her to laugh. I wanted her to enjoy the time she had left here, whether that was thirty more years or thirty more days. I knew that I couldn't control whatever time frame that may be, but I could control what I did with that time. I started recording some of our conversations, and I didn't even tell her I was doing it, but I just wanted to have her voice, her stories her forever. I took photos every time we were together, and i'd stop by just because even if I had to sit outside on the deck while she sat at the dining room table, at least I got to be with her mass and all. One day I started thinking about God, the universe, yahweh Allah, Jesus, whatever you wanted to call it. I started talking to Him and I say him, just to make it easier growing up Catholic. I was still covering from twelve years of Catholic school. But you know what better time to give it up all to Him than now? Show me God. I know you can do this. I know you can heal her, make it all better. You know she doesn't deserve this. You know what a huge heart she has. You know all of the things she does in service to others. You know this isn't right. So make it better. I went online and I purchased crosses and rosaries and even coins that featured Saint Peregrine, the patron saint of cancer patients. In fact, I purchase coins for the whole family, and my car, and my wallet and my bedroom. The more coins and crucifixes and crosses, the better my odds. Right. I put a rosary on the head of my bed and attached one to the rear view of my car. I prayed all the time, talking to God, bargaining with God. I will dedicate my life to you. Just do the right thing, God, make this better. I'd be taking a shower and just pleading with God. Make her better. Give us good news. She deserves more than this, and you know it. One day I asked Mom if she wanted to go to mass with me, and she mentioned it. It actually been on her mind, and they were having a healing mass a few minutes from their house. In just a few days, her and I went together to that healing mask. We both stayed silent in the back as people stood and spoke up about what they needed healing for. I asked her if she wanted to say anything, and she said not yet. What it was time for the individual blessings. Her and I went up together and the pastor gave us both a blessing for healing. Give us all the healing, I thought to myself. In fact, go back and get that Costco sized bulk bottle of holy water. We're gonna need that one. Just bring it on out. I can help you wheel it on out here and just dump it on her like she just won the big game give us all of that magic, magic, holy juice. When we got back to our pew, she told me that she felt comfort there just being there in church, she felt peace, and that made me so happy to hear that she deserved peace. As the mess ended, we stayed and ended up talking with the pastor. Mom voluntarily told him that she has pancreatic cancer, and I was so proud of her for saying that, because she really hadn't been telling anyone at that point. We both cried. Even the pastor filled up, and eventually the conversation made its way to her prognosis, and I immediately began on it's a miracle. They caught it so early. She staged one. And you know that most of the time, pancreatic cancer is diagnosed in stage four, so there's more limited treatment options. But Mom wasn't one of those. She was diagnosed in stage one, so there's lots and lots. Mom pushed back against my enthusiastic optimism. The pastor could tell that there seemed to be a point of contention there between Mom and I, and he said, to her, sounds like he's got it all figured out. Huh. She laughed, and I told him that I was always the optimist, And of course now I'm citing studies in a church on how optimism helps patiencye better outcomes, and now the pastor is about to referee an argument between two hard headed loved ones. Looking back, that was something that I was hard mom about. If she was having a bad day, I'd make sure that I would tell her all the reasons why she should be having a good day. If Keimo was rough and she didn't have much feelings in her hands that day, I'd ask, are you putting the lotion on that the doctor said? And aren't you glad that you have hands at all? If she said anything at all that wasn't I'm going to beat this, then I just didn't want to hear it. And I have guilt about that to this day. It wasn't that I was trying to be contrary or mean or cold hearted. It was that I love her so very much that I didn't want her to ever be hurting or to be sad or half a bad day, because in my mind, if she was hurting or she was sad or having a bad day, that meant that she would lose hope and then she'd give up and if she gave up, I'd lose her. The reality, though, is that when you have cancer, you're going to have a bad day. In fact, you're going to have more than one bad day, and it wasn't my right to dictate to her what those bad days were. I think my mom knew why I was doing what I was doing. My very world was being threatened from something I couldn't actually control, so I was just trying to control anything else that I could, like taking action. For instance, one of the things that we both really did enjoy through Mom's journey was our desire to help PANCAMP. When I had called them on the day she was diagnosed, I was crying hysterically, and the kind woman on the phone told me to take a big, deep breath then, and a big exhale out. She let me know that Mom was in a place that most people diagnosed with pancratic answer aren't in. She staged one, and that means that there are many, many more treatment options for her. But I told her how pancreatic cancer was an automatic death sentence and I can't lose her. I can't lose my mom, and you've got to do something. Imagine that me telling the woman from Pancreatic Cancer Action Network how pancreatic cancer works. She was very patient and kind and realistic. She explained that the nine percent survival rate is due to the fact that most are caught in stage four and Mom wasn't, and she also had a pretty small tumor. So she really did take the time with me and explain reality to me and the options, and that helped calm me down. It gave me more information, and she even offered to reach out to my parents, and she did reach out to them. They'd send Mom cool packages throughout her treatments and Mom really loved those. They helped my dad navigate the insane world of billing and medical coding. They were there for us every step of the way, so Mom and I would do things to help raise money for them. It was a way to take control of something in a situation that was out of our control, and better yet, it helped other people too. But even with the good things that we tried to do, when the good moments that we tried to have during her cancer journey, it begs the question, why why does this happen? Why did my mom get diagnosed with cancer in the bigger, more spiritual picture. What's the point Is there some lesson we're supposed to be learning. There's no one who benefits from a situation like this, There's no one who benefits from any kind of diagnosis like this. Was this supposed to be some kind of big teaching moment for me? The enthusiastic optimist in me says, there were plenty of lessons. What I learned in that first part of Mom's cancer journey is that I made an awful lot of mistakes. As I mentioned earlier, I was too aggressively optimistic to a fault. I didn't allow Mom to have her downs, the same downs that anyone diagnosed with a life threatening illness would experience. But there really is no book on what's wrong or right to do in a situation like this. But is there tried and true, studied guidance for how to get through when you were a loved one is told they have a diagnosis like cancer. I reached out to doctor Nicole Duffy, a health psychologist at the Helen F. Graham Cancer Center and Research Institute at Christiana Karen, Delaware, to find out. So, what's doctor Duffy gonna say about how I handled this and what can you do if you're going through a situation like this? Am I a horrible person for being so aggressively positive around my mom? And I should have allowed her to have her lows and her eyes. I lay it all out on the line for doctor Duffy up next. The treatments and attitudes regarding cancer and many other types of illnesses has evolved, as science always does. Studies show that when a cancer patient has a multidisciplinary team, their outcomes tend to be better. So in many parts of the world, no longer do you get a cancer diagnosis and then your care is handled solely by your oncologist. Today, a patient will often have a team that will work on their care that is made up of their medical oncologist, surgical oncologist, a pathologist, nutritional expert, nursing and a health psychologist. This multifaceted approach not only makes more sense for such a complicated diagnosis as cancer, which needs a multifaceted plan of attack, but it allows each expert to focus solely on that aspect of your care. Doctor Nicole Duffy has worked in the health psychology field for nearly a decade, helping to give a safe space to patience and their loved ones. But what does a health psychologist really do day to day and why would you need one on your care team? Doctor Duffy explains, I am a health psychologist, so I work at the Gram Cancer Center, and you know, just as if you or I were to go see a therapist. You know, that's part of the work of doing outpatient psychotherapy or counseling talk therapy with folks who are impacted by cancer. So perhaps patients with a diagnosis, maybe someone who's completed true and trying to make sense of it, caregivers, loved ones, and then also the bereaved who've lost a loved one to cancer. So, first of all, thank you for what you do, because that's extremely important for so many parts of the process on the cancer journey. What is a typical day for you in your career? Yeah, that's yeah, great question. There is no typical day, which is part of why I love and I've been there nearly ten years now, so a big part of what I do also is integrated care, so we meet with patients and families while they're meeting with their medical oncologists and their radiation oncologist and their surgeon, and sometimes that's when they're first learning about their diagnosis of cancer, or maybe they're learning about their prognosis and treatment plan. And I'm there as part of the support services to help really process some of that experience, but then also help provide any support around quality of life, meaning making sometimes help with any health behavior changes that might help people get through their treatments, that kind of thing. How do you do something like this when you're you know, it's got to be tough on a personal level to be dealing with such heavy, real things. It is is, you know, And I'm human too, right, So every time I hear one of my colleagues give a difficult diagnosis or tell someone that they have a foreshortened future, you know, it's a it's a gut punch every time. Right, I'm a human too, But it's also an incredible opportunity to be able to hold that space for someone and bear witness. And really what I love about it is it's such like an intimate time in someone's life, right, And it's such an important moment. So I often feel actually very humbled and very grateful to sort of be on that journey with someone Wow, that's yeah, that's that's incredible, an incredible way to put it. You know, it is very intimate. There are very few people that are so intimately involved in that process. Your care team and you know some loved ones is kind of the closest people in that situation. So how do we as humans generally handle something like this, whether it's a you know, you have cancer, or whether it's it's you know, I'm sorry, but it's a terminal diagnosis that what have you seen? Yeah? And the reality is is that even when we have a great prognosis and we have great treatments and we're expected to live a very long time after our cancer treatment, you know, we've got good social science that shows us that when people hear the word cancer, they think about the mortality. They think about death and dying. So even if someone has is meant to have a good outcome, right, they're still thinking oftentimes about sort of death and dying. That said, even when folks are given a terminal diagnosis, right, they have a foreshortened sense of future. They might have three months, six months, a year or two that we're presuming that they'll live. People have such a wide array of emotional experience. You know, you might expect someone might feel sad or angry, but oftentimes, you know, people can feel relief, people can feel hopeful, people can feel calm. So part of you know, our job, you know, not just as health psychologists, but as humans and as caregivers and loved ones is, you know, at the risk of sounding like a stereotypical psychologist, like let people feel their feelings right and let people have their range of emotional experience, and letting people do that on their own timeline is really important. Like a lot of what we know now about stages of grief and stages of death and dying has really been critiqued over the years, and it's also very much personally and culturally bound. So really allowing people to feel what they feel and sort of standing with them and that and bearing witness to that is the most important thing. Have you seen over time any kind of shift in people's responses? And what I mean by that is like, you know, I feel like, especially in certain types of diagnoses, that though it may typically be grim, oftentimes there's been progress made in that background, So maybe people aren't as or in general as people do we always kind of go to that. I think it really varies. You know, we have a human tendency a lot of times to sort of go to like a doomsday scenario like disasterize it, yeah, but not everyone, you know. And I think our task as humans is to sort of take on sort of the reality of a moment and the possibilities and hold hope for the future, right, And that's sort of our tasks as people, but also for the planet, right. You know. Oftentimes in today's conversation, we're obviously more focused on the cancer experience, but the reality Actually, one of my patients with lung cancer reminded me, no one here gets out alive, right fuel to Morrison song there, And not to be overly grim, but there's something actually that connects us to our shared humanity when we think about, you know, our own mortality. Right. So even a lot of the conversations, we have a lot of the questions, I ask a lot of the things that we think about, you know, what would a good death look like for you? And something as simple as how do you want to live and how do you want to die, which is simply stated, certainly not a simple question, simply stated, is something that can really guide sort of all of us and sort of how we engage in the world and how we engage with each other. So, I, as a person, am getting a diagnosis. It's not necessarily terminal, but is not you know, going to be a walk in the park either. What are some things that I can do as that person? And also my support system, my loved ones, what are some how do we handle this? Yeah? I think you know. The first thing is to allow yourself that just a range of emotional experience, right, and hopefully your loved ones can tolerate that, right, And it's okay if they can't. Right, It's okay to be a person that can show up with a cast roll but can't sit and listen to someone contemplate their mortality, Like, that's okay. Like, know what you can do and you can do consistently and show up for that person. Like maybe you're someone who can send snail mail and you'll send greeting cards or shoot a text message or pick up someone's kids from school. Like, so as a support person, just you know, ask what they need and if they don't know, suggest something that you know you can do reliably. Right, if you're not an awesome cook, like don't offer to make a cast roll, right, but you know, show up in the way that you can for folks, right, and then the person going through it. You know, a lot of times people have a drastic shift in their role, like maybe they were the caregiver or maybe they were the provider. And for a lot of folks that can be very difficult to articulate the needs that they have and accept the help that's available to them. But recognizing, you know, we're not meant to come into this world alone and we're not meant to go out of this world alone. And if you're fortunate enough to have a loved one, a family member, a friend, a reliable neighbor to lean on that person. And if you don't have someone in your life like that, there's professionals like myself and others at the cancer center and in the community that you know, we've got community health workers, we've got social workers, you know, all types of folks that can sort of walk the walk with you. You know, for me, if for my mom, when my mom first got that diagnosis, you know, I, which was pancreatic cancer, I was devastated, but then quickly when I saw I realized that she was a bit down about it, and then I'm like, oh, no, no, no, no no, like, you're not gonna be You're gonna beat this. And so I almost was aggressively positive looking back on it now, you know where I and you know, I'm still working through the guilt that I have about that now because I should have. I feel like I should have let her be in whatever space she was in. And but in my mind, if you were negative at all, you got a worse prognosis than if you were positive. And you know, but I was like the opposite extreme where I was like really kind of being blind to the reality of the situation, not saying she's going to pass away, but you know, it has at the time a nine percent survival rate over her treatment, it went up to eleven percent. If she was like I'm having a bad day from chemo, I'm like, no, no, you're not. You're having a great day because you're alive, and blah blah blah blah blah. And at one point she was just like Kyle, like, I'm allowed to have a bad day. That doesn't mean I think I'm going to die. That doesn't mean I'm giving up. I'm allowed to have a bad day, and that kind of like hit me, you know where. I'm like, she is allowed to have a you know, this is her journey, and of course she has cancer. Of course she's going to have a bad day. But that was hard for me to accept that because I felt like if there was any negative, even if she wasn't being negative about her prognosis, but just about you know, I can't feel my finger tips from chemo today, so it kind of sucks. I'm like, well, no, but you can use your hand, So why are you being negative about you know what I mean. So there's so much richness in what you said. If it's okay, yeah, of course please. There's a couple of things that I just wanted to mention about because it's so important, and thank you so much for talking about your mom, and you know, I'm very sorry for your law. Thank you genuinely. So there's a couple of things. The first thing I want to say is that it is our natural human reaction, especially when we're in a relationship and someone goes low, we go high. It's like we're on a seesaw or something, and that's like a normal natural response, right. We try to kind of almost overcompensate at times just to have that homeostasis and that balance and that you know, most of us do that, right, and that's that's okay, that's sort of expected, right, And when it's our loved one, we want to be the most hopeful that we can possibly be right and other than like your actual loved one. You know, my medical oncologists colleagues are like the most hopeful people I've ever encountered, like the most optimistic, right, And it's incredible, right, And you need people like that to hold that hope on your team and in your building. Right. The second piece I just wanted to tap into was this idea of it's so hard after the fact. It's like could have, would have, should have? Right, And we had this kind of stereotypical thing in psychology, like stop shooting, shooting all over yourself, and we always want to like go back and redo and we replay, and the reality is is we do the best we can in that moment with what we know and what we have. And part of living through you know what you lived with as a caregiver and as a bereaved person, you know that you sort of take with you, and that's part of the legacy that you're currently living for yourself, but also for your mom, right, and the fact that like you do your Pan Can Pie challenge, Like that's an amazing way for your own legacy, but also for her legacy too. Thank you, Thank you. And I'm still struggling with that, you know, and I'm I'm coming to terms that. You know, at the end of the day, she she knew where my heart was, you know, she knew I wasn't trying to make her journey harder. You know, I was trying to do the opposite and change whatever outcome. You know, I was trying to make the outcome the outcome that I wanted to be, not what it was going to be. Yeah, And in fairness to you, also, I think there's a lot of pressure that happens in popular culture but also sometimes in the medical community when we're feeling like hopeless, to say, like we just have to think positive, right, And we actually call it a sort of the tyranny of positive thinking. Right, So that didn't just come from you, right, Like that's sort of a message that many of us taken. And the reality is is that you know, again, like holding hope is really important, but this sort of manufactured like think positive, think positive, it's gonna you know, it's not super helpful, right, and we know that now moving forward, right, Yeah, And while I do believe in the power of positivity in general, you know, is it really going to stop cancer from spreading? You know what I mean, like because oh, well, you didn't think positive enough, so you know it's spread to your you know, stomach or whatever it is. I don't. I think that's really out of one of the only things that we feel like it's in our control in those moments, right, And so we're always trying to take control, you know, and there's so little especially as a caregiver, as a bystander, there's so little in our control. And even as a person going through treatment, you know, you can take your medicines and show up for your appointments, but ultimately a lot of it's out of your hands. So thinking about, well, what is in my control? And sometimes that's health behaviors, right, Sometimes it's thinking about, you know, what's important to me and how do I reconnect to meaning in my life? And I was actually really fortunate before COVID actually December of twenty nineteen to go to a memorial slum cattering in New York and learn meaning centered psychotherapy from doctor Bill Breitbart, which is based on Victor Fronkel's Man Search for Meanings. So we're getting really x estential. And what I loved about it is, first of all, just meeting with all these physicians and psychologists and social workers who work with people at the end of their life dealing with cancer. But it really gave a frame and a language to what we'd already been doing here at the Hell and Grahm Cancer Center, a research institute which is really to sort of be on this journey with people in the context of psychotherapy at the end of life, and a lot of what that work is based upon is helping people reconnect to meaning in the most dire circumstances, So reconnecting to your meaning in your life and what's important to you and what you value even when you have three months to live. And this came from the work of a man who was writing this and thinking about this while he was in concentration camps. So the idea being, you know, kind of extrapolating that to sort of end of life cancer setting. We've used it certainly in a COVID context. I've used it with physicians providers who are treating COVID patients additionally, but I really have seen it for myself in the last few years as a frame for how we engage the world about our own legacy, about what's meaningful to us, how we find value, and how our identity shifts over time, and how we can still be a person of meaning and value in the world even if we have numb fingers and drop things, and we can't do the things we used to do, and we can't either breadwinner or the caregiver right, We're still a human of value. That's thank you. That's extremely I think important for people to remember. One of the hardest things that I grappled with on Mom's cancer journey was when I began battling myself and my own thoughts regarding Mom's prognosis. Towards the end, I watched her as she laid in bed in so much pain, sometimes just sobbing from the unbearable weight of it all. At one point I had a horrible thought that gave me so much anxiety. Would it be better if she wasn't here anymore? When we come back. Doctor Duffy explains why I would think such seemingly horrible things and if that makes me a horrible person. One of the hardest battles that I have ever fought in my entire life was in my own mind. God, please take Mom. I cried at the fact that I was even having this thought, but I cried even harder imagining my life without her. I couldn't imagine my life without her. I don't even want to think about life without her. But here I was asking the universe to make it happen. Those thoughts made me feel ashamed, horrible. I'm loyal. Those thoughts made me feel like I was a monster. Doctor Duffy gives background to why those thoughts may not be as horrible as they seem. My mom and my mom mom her mom were always my rocks. They were my people, and we lost my mom about three months before. My mom she had an amazing life, long life, and I chairished all my time with her, so that wasn't necessarily unexpected. My mom was My mom never smoked, you know, never drank, was extremely healthy in the way she ate, you know, she only she never ate red meat like only a chicken. Was big on all of that stuff. So it was a bigger shock to me with my mom's prognosis. But what I found that when when it switched from we have hope it's extremely small. She was caught in stage one, which is extremely rare with pancreatic cancer. And it just so happened that they were doing a scan or something for an ulcer or something like that and ended up seeing this, you know, it was it was non related that they found this, and then they were like, there's something there, let's look into that. So it was all kind of I don't want to say positive at first, but more hopeful at least for me. And then and she responded extremely well to the treatment, and it really what happened when she went downhill was she started having she got diagnosed with IBS, which is like super common, but she wasn't able to eat to keep food down. Then she became too weak just from that within a few weeks to not being able to get her treatment, which then just set everything in a bad, you know direction. But what I did realize is so I'm very typically an active person and probably too active with my schedule and that sort of thing, which was probably a whole nother podcast that could be done. But I found myself caught between binging like you know, my thousand pound life and like hoarders and stuff where there are days I just couldn't get out of bed with then the next day being like, oh I have I'm booked from nine am until you know, nine pm, And I got all this blah blah blah blah blah. But I found myself less and less being able to control the I just don't want to get out of bed today. And what I found was when that diagnosis turned from we're very hopeful, you know, we believe she'll be able to get surgery to get it removed and blah blah blah to we're out of treatment options that we think can contain this right now, I went very very dark, you know, for a period, you know, for probably a couple of weeks. But then it was almost like a calm where I'm like, Okay, I want to spend as much time as with her as possible, even though I normally would, but I wouldn't definitely make sure, and you know, I wouldn't even tell her and I would just go over there and record audio, record like her talking, just so I have that forever. And finally it got to a place where I'm like, you know, and I still struggle with this too, but where I felt guilty because I was like, I almost want her to go because she became you know, she went from one hundred and ten pounds to sixty three and didn't look like herself and wasn't that physically strong person that was always there for me and she couldn't be, you know, And I got to a point where I'm like the super hyper, you know, positive focused person too, God or whoever is up there or whatever, universe, fate, whatever, please take her because I don't want to see her like this anymore. And that was hard too. How you know, if somebody's feeling that way, is that okay? And how was that? You know? I feel like in some ways, I mean, my brain says, it doesn't make me a horrible person because I don't want her to suffer. But I also feel like, well, if I'm saying that, isn't that giving up any kind of hope that there could be some you know, fourth quarter miracle or something, you know? And I you know, I'm so grateful for your honesty and your vulnerability because people don't often say these things, and many of us are thinking them. But you know, you're talking about compassion, and you're talking about dignity, and you're talking about sort of honoring your mother like who she was in her life and kind of honoring that even in her death. And sometimes the most loving thing we can do is to help people prepare to go. And sometimes I apologize if this is like a terrible analogy, but most of us have had the experience of life where we stay in a relationship too long, like a romantic relationship or a job, or in treatment sometimes, you know, and sometimes that happens. And sometimes the most compassionate and the most loving thing is just to stand with someone and to help ease their suffering. You know, we all have struggles, and some are more intense and thinking about you know, you've lost your momm and then you lost your mom and such short time, right, but the suffering peace, right, like can we can we ease some of the suffering for her, but also for yourself? You know, when you're talking about like these rocks, these amazing women in your life, right, there's all kinds of losses. And you've been really open in public about sort of non death grief that you've had and also death grief that you've had, and when we think about sort of losing your mom, we have a frame for that that's even though it's painful, it's a little more tolerable. It's a little more part of what we envisioned, a sort of our own natural course of life. And when we experience a death, particularly a loss, but really a death kind of lost, that has for us felt like it's come out of the blue, that it was premature, that it was from an acute illness, from an accident, from a war, from a virus, a loss of your mom, the loss of a child, like these these things that feel unimaginable. You know, that's not something that like we need to barrow alone. And so much of this we live and we don't talk about. And so thank you for giving voice and words to this and like allowing us here today and your listeners to be able to sort of reflect and think about the people that we've lost this journey we've been on in terms of you know, alleviating they're suffering, but also our own. Thank thank you. And you know, I am the type of person that I need to do something and whether that's for me or for a friend or whatever, like I need to do something, and so going through this and I still you know, it's been thirteen months and I am still grieving. I'm learning how to live with the loss now rather than you know, one of the I think the biggest things that has been on AHA for me is that somebody said, you don't get over it, you don't stop grieving, you learn how to live with it. That gave me the permission almost to be like, okay, so I'm not like a freak show for you know, driving my way to the station one day and I'm not thinking about anything and all of a sudden, I just start bawling and I have to pull over. And that it made me feel a little bit less strange on this journey that is totally strange, you know, especially as you said, I think with or it's not a normal part of the life process. I feel bad for my mom in some ways because I was so close with her and didn't really get to grieve her because as soon as she passed away, my mom got the IBS thing and then that was you know, that journey. So but I also in some ways feel that my mom passing allowed it to be easier for my mom because they were so close. So one thing that, you know, another thing that kind of spurred me to do this was one of my best friends. Out of respect for him, I won't name, but I want to. I texted him and I was like, here's you know, here's the date of the funeral and here's where it is and blah blah blah. And he's like, oh, I'm not going to that. And I'm like, what you know? And he's like, oh, I don't do things with like people crying and stuff. And I'm like, my mom died, Like you've been to her house for years and come to our family event. What do you mean? And he's like, yeah, I just I don't do that. At first, I was like really hurt. You know. I'm like, you're one of my best friends for a decade, have met all my family, you know, and all that, and then you're just like, oh, I'm not going to that. I couldn't deal with it at that time because I had so much going on more important. But later on I thought to myself, you know, it's not personal from him. He is ill equipped to be what I need from a good friend, which I can't make him do that. It's only gonna, you know, hurt me. Really, what you're saying is so important, and I think people really need to hear this is that when any major thing happens in your life, there will be people that you expect to show up and you hear crickets, and there will be people that you never envision in a million years who will up in incredible ways. And that has nothing to do with you or to the gravity of what you're dealing with or in your case, with your moment you lost, And just as you articulated, it's everything to do with where they are in the moment of their life and their preparation for these moments. Yeah, it kind of made me feel bad for him. You know that he and I don't. This is not probably psychologist appropriate, but he he is probably not in a space developed mentally personally, you know on a psychological level that he is able to do that. And why am I going to waste the small about energy that I have at that point in my life begging or fighting or whatever with you know, somebody that's close to me during a time where I need that, when I have all these other people that are coming out of the woodwork. You know what I mean. And then I had to reconcile that later on, because probably a month later he texted me and he was like, hey, what's up. And I'm like, okay, we're just like forgetting like the last month, you know. And but I had to kind of say to myself, look, he's clearly got his own problems with that, you know, so I can't attack him. You know. My choices are either cut him out of my life or understand that he's never going to be that emotional person that I can go to to talk about heavy stuff. You mentioned a friend that had lost a parent before you lost your mom, and how that person, you know, had a lot of wisdom to drop and I think, you know, for me, you know, when I lost a parent, it was like those kind of mentor friends that knew the thing, Like they knew when to call, and they knew when to show up, and they would write down the anniversary date right of when I was my stepdad who passed, when my dad died, and they and they would call on the anniversary and drop flowers and and thinking about even just like the uniqueness of like we both lost a parent during COVID, which is a very challenging time to grieve, and it's a very isolative time, and it's a very bizarre time, and many of the rituals that we would engage in were not available to us, or at least not in the ways that we would need them to be. And that's really intense, right. And there's no shortage of reminders about cancer, right, Like you turn on the TV, like there's commercials, there's you know, constantly patients are telling me like, I'm just bombarded with reminders. I don't need a reminder about cancer, right, And it's incredible, but you know, I know, at least I'm not like a huge silver lining person, but I know, at least for me, it's helped me show up for other people so when they have a loss, like I put the date in my calendar, right and not unlike your friend, Like I don't think I was always the best to show up to funerals and wakes. And now I'm like reading the obit and I'm trying to do what I can do, you know, like in that way, and I'm not doing it perfectly. You know, there's ways I can show up even for my patience and my professional life and hold space for intensity of conversation and challenging conversation that sometimes I don't hold space for my personal life and that's okay, you know, that's okay. I think the biggest thing that I'm learning doing this show is that there is no guidebook. You know. I'm still angry about some parts of the process, you know, with like you mentioned about COVID, you know, Christmas, she was in the hospital and we couldn't go see her, and people are like, aren't you angry at the hospital. I'm like, well, no, they're trying to keep a virus from a cancer ward. You know, I'm angry that this situation is here. And you know, I'm not angry at specific things. I'm angry at what is happening. And as you know, you know, you had to grieve or go through this process distantly in a lot of ways. That's not fair to us. You know, it's not fair, and there's nobody to be mad at because it's no one person's fault, but it's just sucks, you know. So um so I'm I think that's my biggest takeaway is that I do still have a right to be angry about that situation with COVID, and that happening to my mom and where my mom you know, I found out at her funeral, this one woman came and I never knew this, and you know, I thought I'd know most about my mom, but she was like, you know, your mom used to take me to my treatments. I said no, and she was like, literally every single week she would come and take me, you know, pick me up and take me. And another friend had said a friend of hers had said, um, when she had gotten divorced, she was going to lose her house, and she was like, you know, your mom like helped me financially to make sure that I could stay in my house for like six months until I got back on and we found out all this stuff and that made me happy, you know, But then I'm still allowed to have that happiness that surprise about her, but also still have anger towards the COVID part or whatever. Like. So it's all of these things at once, absolutely and just how important it is to have those moments. However, they come when people from what was your mom's names, Joanne, Joanne, from people from all aspects of Joanne's life that you wouldn't even like your dad didn't know, right, like you didn't even know these different pieces that it makes like a fuller person, and it's such an important part of her legacy and such an important part of her identity, right and in one a richness and to be able to have that, you know, that's incredible, right, and it just sort of that's amazing, Like your mom sounds like a super cool lady, you know. Yeah, I was. That's what I was like, Oh, yeah, that's cool, Like it's my mom, you know, I guess awesome mom. Yeah, and uh, you know, this journey is just tough, you know, and there's uh that first twelve months for me was I was telling my dad this the other day was survival, Like how do I get through Christmas? How do I get through that day? Just alive? And you know, Easter and all of those things, and just you know, something exciting happens. Normally I would text her and be like, hey, guess what happened or you know, something with my career or whatever, and I would just drop over there. I always joked around that I would go shopping at my parents, food shopping at my parents, because like, I don't want to go to act me. I'll just go to my parents and like you know, just the like that that you know I miss and is not there, and things that I kind of took for granted in a lot of ways, there just is now. And my point in all this is there is for me anyway. There has been no rhyme or reason or roadmap that I can follow. That's like, you know, no, but that's incredible, right. I appreciated what you said about before about just even driving into work and feeling tearful. And just as many people will tell me they'll have concern about being like overly emotive, like why am I still falling a piece? It's been a year or ten years, fifty years, right, And like your friends said, you just you incorporate the loss into your life. It doesn't go away. You just incorporate into your life. And also just as many people will say, I had a really good day today, is that okay, I feel kind of crappy because I wasn't sad today or I didn't even think of my loved one today on all day. Right, And that's okay too, right, that's okay too. It's important, right, what is the if you could give one takeaway that you want someone listening to hear that is going through this process or has gone through this process. Um, what what is that that you want them to know? So on the on the side of the person who is dealing with a really serious illness, I think I really want them to know that they're not alone in this um even if they're feeling alone, right, there's there's folks here that are ready to kind of like walk the walk. But also that again, this is really like my belief when it comes from the work of Runcles, that we can make meaning in our life up until and through our death. Like you can have a meaningful death and we don't always get to plan how it goes down or where it goes down or all of that, but there can be meaning in that. And to the best of your ability to be able to articulate to people you trust, this is how I want to live, and this is what's important to me when I die. That's such a sacred conversation. And you know, whether that's with your doctor or your loved one or you know whomever, even for yourself, right if you're kind of a private person, just writing it down for yourself, so it's there is really really important. And then I think on the side of kind of the caregiver or the bereaved. It's again like you're not alone in this and any path you're on or any range of emotion. You know, the emotions are all valid. It's what we do with them and the behaviors and the actions that may or may not be congruent with our lives and our loved ones and the one that we're about to lose or we have lost. You know that we oftentimes need to keep in check, but the feelings are there, and you know people have gone through this before us. And what you're doing on your show to sort of make this a topic that people can talk about and listen to is huge, is huge. Thank you, Thank you doctor so much. You have been just a wealth of information and I think you know that our conversation, you know, I think will really help some people. So thank you and thank you for what you do and for bringing sort of a voice to this is hugely important. So there it is expert advice from someone whose job is to help patients and their loved ones successfully manage all of the emotional pain that comes with a life changing or life threatening diagnosis. All too often we allow our mental health to come secondary to our physical health, but we really should be putting them both at the top of our priority list. Equally. One can be in physical pain, but that's going to take a toll on their mental health. One can be in mental pain, and that's going to take a toll on their physical health. One thing I've learned through mom's cancer journey is that no matter what step you are on your or your loved one's journey, be sure to take care of your mental health. Reach out to a psychologist or a therapist. Create a space in your own life to prioritize your own mental health. Recognize when your mental health is flaring up with issues, just as you would with your physical health. And another bit to take home, take far too many photos, take far too many videos. Tell everyone you love that you love them, Spend more time with those people. We aren't guaranteed time, and we aren't guaranteed life. And while it sounds cliche, life truly is precious and it can be taken away at any moment, and no matter how much you've prepared for it, it will hit you like a dump truck when it does. When we're doing everything our care team asks of us, we ultimately can't control the outcome of the prognosis. So take hold of what you can control in positive, healthy ways, and allow yourself the permission and that space to do it. On the next episode of Death, Grief and Others we don't discuss, we explore what happens when a life threatening illness turns into a life ending illness. What does that do to someone? What does that do to their loved ones? How do you go on knowing your time is far more limited than you thought. Then I speak with doctor Greg Masters, a world renowned expert oncologist, on the personal side of giving a life ending diagnosis and his advice on how to handle it. For additional information and resources on what we've discussed today, please visit our website at Death and Grief dot com and join the conversation on our Facebook and Twitter. I'm going to see my mother, she said, she me me when I Google