GCM 204 | Castleman Disease

When you’re at your lowest point in life, there’s one thing that you have to have, and that is hope. That is how David Fajgenbaum survived Castleman disease. David is a physician, scientist, author, and Co-founder of Castleman Disease Collaboration Network. Diagnosed with this very rare disease, he was at his wit’s end but found hope just as things were about to get worse. David found his cure, and he narrates the story of his journey with the disease and the treatment that saved him in his book, Chasing My Cure. Today, David joins Rodney Flowers to talk about his sickness and how his family helped him through this part of his life. Find out how he is helping people now with the life-threatening disease find hope and vision.

Listen to the podcast here:

Chasing Our Cures: How To Live A Life Full Of Hope And Vision With David Fajgenbaum

As always, I’m excited about our episode. I have David Fajgenbaum in the studio with me. He is a groundbreaking Physician, Scientist, Disease Hunter and Author of the national best-selling memoir, Chasing My Cure: A Doctor’s Race to Turn Hope Into Action. David went from being a beast like a college quarterback to receive his last rights while in medical school and nearly dying or, more times, battling Castleman disease. We’re going to talk about what that was all about.

I have David here with me. He’s here to share his story, how he’s been able to overcome and hopefully, provide some insight on maybe there’s something that you’re going through. There’s an illness that you’re fighting. There’s a challenge that has seemingly put you down and out. You’re talking to a miracle here. This guy has been able to defy the odds and save his own life. He’s going to talk about an innovative drug that he discovered and how it’s helping him stay alive. Without further ado, let’s welcome David Fajgenbaum to the Game Changer Mentality Podcast.

Welcome to the show, David.

Thanks so much for having me, Rodney. I’m thrilled to be here.

GCM 204 | Castleman Disease

Castleman Disease: During tough times, you should come up with a vision for what it is that you want in the future.

 

David, I remember receiving your book in the mail, Chasing My Cure. It stopped me in my tracks. Being someone who suffered an accident that there was no cure for. There’s nothing they could do to turn what happened around. Your book stopped me in my tracks and I immediately began to open it and flip through it. I was looking at some of the pictures, weight loss and things that had changed in your body. What was most interesting is you can see the progression, when you were down and out, your progression back and then what that looked like. It was a night-and-day type of thing. I thought to myself, “This is amazing.” I was looking forward to interviewing you and understanding what you went through mentally.

There’s a couple of key points here I want to get to. That transition from “there is no hope” to “there’s absolutely hope” because not everyone is able to make that transition. Sometimes, we get to a place where we feel there’s no hope and we don’t see that light. We stay there and then the light goes out but you were able to turn some things around that were miraculous. I’m happy to have you here. Tell us a little about Chasing my Cure so that we can dive into this.

Thanks so much, Rodney. I’m glad to hear that it had had an impact on you. My journey has changed my life in a lot of ways, which is why I felt obligated. I had to write this book to share these same lessons with other people so that it can change their lives as well. I was a healthy medical student. I played college football at Georgetown before medical school. I was always the picture of health and out of nowhere, I became just critically ill. All of my organs started shutting down. Liver, kidneys, bone marrow and I got sicker. I was hospitalized. They transferred me to the ICU. I was on dialysis. It was as sick as you could get, all of the no diagnosis. During this time, it was difficult mentally to try to wrap my head around what was happening to me physically. I struggled during that time and felt like I didn’t have any hope.

In tough times, surround yourself with the people you love. Share on X

The doctors didn’t know what was going on. No one could figure out what it was. They couldn’t figure out how to treat it. I found during those times a few lessons that have stuck with me that I think are important for all of us to think about during tough times. The first is you have to surround yourself with the people that you love. Your family, friends, just them being present with you. Being present is so important and having those people with you during tough times. The next thing is when you’re going through a tough time like I was, is coming up with a vision for what is it that you want in the future?

All I could only dream and think about was surviving so that one day, I could get married to my girlfriend at that time, Caitlin. One day, I could get out of the hospital so that I could fight cancer, which I’ve been wanting to do as part of becoming a doctor. These were things that drove me. One day, I could even have a family. That was a dream. It’s important to have that vision for what you want for the future and what you’re hoping for. It’s important that each of us reflects on what we are hoping for. What is it that we pray for at night? What is it that we hope for during the day? We say, “What can I do every day to get me closer to that thing?” The last thing is to get busy doing, think it and do it. If you’re going to hope for it, if you come up with a plan, get going. Those four things were critical for me as I was dealing with my early battles. Unfortunately, I would go on to have relapsed after relapse. Fortunately, I learned a lot from each of those relapses but unfortunately, I struggled a lot throughout them.

What was going on? Can you give us a little bit more detail about what was happening with you? Is there a name for it? Give us a little bit more detail about what was happening.

I kept deteriorating. Deteriorating so much that a priest came into my room and read my last rights to me because the doctor said, “He’s not going to survive. This is it” I’ve considered that to be the start of my overtime. You can appreciate the concept of overtime, the extra time you didn’t think you’d have. Thankfully, right around the time of having my doctors say they’d given up, the diagnosis was finally made. I have a disease called Idiopathic Multicentric Castleman Disease which is a mix between autoimmune disease and cancer. You get really sick. Unfortunately, at that time, the only treatment option is for chemotherapy. I got a combination of seven different chemotherapies that brought me back from the dead.

I was on the verge. The chemotherapy saved my life. Right around that time, I was started on an experimental drug. A drug that was not approved but was the greatest hope we had for our diseases. This was going to be the drug. This was that miracle that we all had been hoping for. I was started on it and I hope that it would work. Unfortunately, I relapsed on that drug. The only drug in development for my disease. You talked about hope. I’ve learned that hope can have many different meanings. There’s the kind of hope that gives you strength because you know that you can get through it because someone else has got through it that was like you.

I certainly gained hope from seeing other Castleman patients that had benefited from that drug. I was so disappointed when I found that that drug wasn’t working for me and there was no more hope. Almost objectively, there was no reason to be hopeful. My doctor told me that. I was at my lowest point when I realized that there was no way I was going to survive. My back was against the wall. There was no way I was going to survive if I didn’t do anything and it was unlikely I was going to survive if I did something. At least one in a million is better than zero in a million. I decided that I was going to take action and dedicate the rest of my life, however long that may be, to try to find an answer.

Those are stats and numbers. It’s like a 1% chance. Given those odds, what made you say, “I’m going to take action on these odds?” The odds are not in your favor, you relapsed on the drug, which was a level of hope and inspiration that let you down. Now, that’s not there anymore. The odds are not in your favor. What gave you the reason to say, “I’m going to go for this anyway. I’m going to fight.”

It’s a few things. I had this amazing woman next to me, my girlfriend, Caitlin, who I was dating and dreamed of a future with her. I had this life dream that I’d been pursuing ever since I was in college. My mom died from cancer while I was in college. That set me on a mission that I wanted to treat cancer patients. I wanted to be a part of cancer research. I had this burning mission that I knew I wouldn’t be able to be a part of if I didn’t make it. I had these two drivers, which is, “If I could find something then I could spend more time with this amazing person right next to me. If I could find some drug, I can be a part of this fight.” It’s unfinished. I’ve worked to do, avenge and get some revenge back on cancer. It was having those things in front of me that said, “I’ve got to keep fighting.” Even if it’s very unlikely, it’s going to be worth it if I can get there. It has been worth it.

GCM 204 | Castleman Disease

Castleman Disease: When you’re at your lowest point, you need drivers, whether it’s a loved one or an unfinished goal that will help you make it through.

 

The odds were against me but thankfully, I was able to find a drug that was developed many years ago for another disease and no one had ever tried it before for my disease. I thought that it might work for me. I didn’t think it was. Likely it was going to work. I hoped that it could work and I was able to convince my doctors to try it on me. I passed seven years that I’ve been in remission since starting that drug because I’ll never round up. I won’t ever say it’s almost seven and a quarter years because I know that I have no guarantee for tomorrow. I don’t know how I’m going to make it to seven. I won’t round up but I also don’t like to round down. It’s been more than seven years. I’m going to fight for every little fraction that I can get.

In an era where there’s so much uncertainty, even when there’s no certainty, there’s always hope. The power of hope is it’s powerful. When you can’t see a way, it doesn’t appear that a way is going to present itself. You still hope every day. You still look for it and have that expectation that perhaps, something will appear instead of allowing the light to go out. If not, providing the inspiration that you need, like in your case, gives you more time. I feel like when you say there’s no hope, your light goes out. You turn the lights off. You close up shop. You can’t receive anything because you’re not even open to receiving it but because you have hope, “I’m going to stay alive another day. I’m going to fight another day.” Having that endurance to make it one more day, take one more step, or fight for one more inch, you never know what that brings the result of going an inch further can change a life. It’s okay to be in a place where there’s no certainty but never give up hope.

There were times where I felt like I was giving up hope and I felt like I had nothing left. I looked to my left, I see my dad and my sisters. I looked to my right, I see Caitlin. That’s all I needed. That’s what I needed to ignite a little more hope in me and say, “I’ve got these people around me that I’ve got to keep fighting for.” You talked about hope and fighting. These things fit together because sometimes and I was guilty of this. Sometimes, when we’re very hopeful about something and believe that there’s a good likelihood that something is going to happen, that makes us sit back and let it happen. I’m hopeful that this is going to happen. I don’t have to do anything about it. I can be hopeful and wait.

It’s important that if we’re going to hope for something, in my case, it’s for treatment or more time with my family. That’s where we got to say, “What can I do now? What action can I take now to get closer to that which I’m hoping for?” I was stubborn. I talked about it in Chasing my Cure. Early on, there must be someone, somewhere, some doctors out there figuring this out. I can wait and hope that someone else is going to figure this out for me. It took me multiple relapses before I was like, “There’s no one else out there. If I want it, I need to do it myself. If I want this outcome, I need to take action.” That’s one of the central themes of Chasing my Cure. Hope is incredibly powerful. It can drive you and call you to take action but you’ve still got to take action. You still got to take that next step.

I’m sure you’ve heard the saying, “Faith without work is dead.” You can’t have hope and then don’t support it. You have the walkway for a bridge but you don’t have the supporting material that’s going to hold the bridge up. You have to have the work. The work makes the hope become more reality and it increases the expectation and the hope. Whatever you’re hoping or believing can come to fruition. The more you work on it, the more that that’s a reality. You are fostering. This becomes a repetitive, continuing type of thing that builds snowballs and it may start very small but it’s the work that allows it to grow into something bigger.

When you say there's no hope, your light goes out. You close up shop. You can't receive anything because you're not open to receiving it. Share on X

It’s a good point especially in your case because the doctors who were the experts and the specialist in your case couldn’t come up with the answer for you. The answer was, there is no solution. You need to prepare for X, Y and Z. It says a lot about you because when the experts say, this is it, a lot of times, there are no other alternate solutions because you figured that they’d exhausted everything, they’re the experts. In your case, you took it a step further. This is a testament to life, challenges or goals in general, where when it seemingly appears. There’s no answer. There’s no solution, there’s no way.

In your case, it was a life-or-death situation. I want to say it’s different because it’s a life and death situation but I want to use that because I feel that in life if some of the situations we are currently in, have been in or life in that situation, we would have done more. We would have gone into overtime taking that extra step, fought a little harder for that extra but because it wasn’t a life and death situation, we let it go. You dig a little deeper and go a little further. You spread your opportunity a little wider like, “Let’s turn over this rock, let’s see.” That’s what happened in your life. I loved that because we all can learn from that. I’ve not heard of a story where the doctors were like, “There is no other drug we’ve exhausted and we’ve even brought to you this experimental drug. That’s it.” You’re taking it further than the expertise of the doctor and you’re the patient. That says a lot about the ownership and the power to take control of our lives because that’s the position that you were in at that moment.

I gave you a couple of thoughts that I had. My family is certainly motivating me but honestly, the part of the reason that I think I wasn’t willing to accept that that was it is I had accepted it when the doctors told me that with my mom that this is it. I saw the reality that when you have exhausted all options and the finite nature of these awful diseases. If you don’t keep fighting, they will take your life. I had witnessed it and I’d been a part of that. When the doctors were telling me the same thing, I said, “I’ve been here before. I’ve heard the same thing before.”

The last time, what we did is we spent a lot of time together. We spend a lot of time with my mom. We all came together and we made the most of those last couple of months. That was one option. I said, “I’m going to make the most of these last couple of months. I’m going to embrace the time with my family and I’m going to enjoy it.” Not to say that I didn’t embrace time with my family but I was spending a lot of time back then working. It was like, “I’m going to take our big risk, which is I’m not going just to enjoy these few months and make memories. I’m going to work and maybe there’s a chance that this work is going to pay off and we’re going to have years together to make memories.” Thankfully, that paid off. It’s been years.

It’s something to be said to have a why. Sometimes, it’s cliche. I hear it all the time. That self-development and inspiration industry but to have something to live, strive and work for is a very powerful thing in that and in your case, being able to marry that the woman of your dreams and be with your family. That’s an important point when dealing with challenges. To have that thing will see you through. That will make you want to get out of bed, do the hard stuff, deal with struggle and deal with whatever temporary things you got to deal with in order to get to the other side of it because that’s hard. That’s the stuff we don’t want. That’s the ugly part of it. Most of the time, we don’t want anyone to see. They don’t want anyone to know that that’s what we have to do. That’s what we’re going through. We don’t want to go through it.

When you have a why, you have something that you’re emotionally attached to that drives you, will make you go through a wall and make you go through whatever you got to go through in order to experience that. That’s important. That’s another point to make here. The other thing you said was a vision. Being able to see yourself on the other side living life. Not so much your vision is, “I got this. This is what it looks like,” and your dwelling on that but you have this possibility and that’s at the forefront of your mind every single day. You know that where you are now, you’re there but that’s not the end. You’re striving. You’re working every single day for that. That’s the focus. We all know that energy flows where focus goes. We’re putting our energy in the right place. It’s supporting the hope, end game and goal. You mentioned vision as 1 of the 4 things that helped you. Give us some more about that. What role did vision play in detail for you?

The first thing that comes to mind was when I was first finally diagnosed. I went to the expert who was in Little Rock, Arkansas and I was waiting to see this expert. As I was waiting, I met another patient with my disease. My disease is rare. There are only a few thousand diagnosed a year. I hadn’t ever met another Castleman’s patient. He was my age but he looked so healthy. I was sick. I could barely stand, walk and keep my eyes open. He started to tell me his story and how he had spent months in the intensive care unit. How he had had multiple strokes and all these awful things happen. I was just looking at him and he looked healthy in that. That’s being able to see someone that had gone through what I’d gone through. He was sitting there looking healthy. That did give me a lot of hope.

He benefited from that drug that didn’t end up working for me but I hope that maybe it would. Seeing him with part of a vision of like, “I could be like him. I can physically see someone. I could be maybe in a year or in a few months.” That was powerful for me. When I think about vision, I could literally picture my wedding day with Caitlin. I could picture that and wanting that so badly. It was six months before we were due to get married. We were engaged and we’re hoping to get married on May 24, 2014. It was when I had a major relapse and we didn’t think I was going to make it. When I did make it, thanks to chemotherapy, I knew that it was coming back again soon unless I found a drug. There was this clear thing in my future and that was May 24, 2014. If I could find some medication, I didn’t care what I had to do, what it was or anything. I don’t care about May 25. I did. I made it to May 24, 2014.

GCM 204 | Castleman Disease

Castleman Disease: Hope is incredibly powerful. It can drive you and call you to take action.

 

We got married. Every wedding is the happiest and exciting occasion. Everyone feels their wedding is the happiest but ours feel extra special because of how low things had been leading up to it and how uncertain it was. Even just a few months before, we weren’t sure if we were able to keep the day. My hair had grown back in time from the chemotherapy. I got a bunch of chemos before and I was bald. It felt like everything lined up for this wedding.

What keeps you going now? You’re married and on the other side of that particular challenge, what’s your beacon? What’s your lighthouse?

Few things. First off, Caitlin and I had a daughter so now I’ve got a little girl, Amelia. She has my mom’s initials. She’s the newest AMF, which is obviously so special to have her. She and Caitlin certainly motivate me to want to keep doing work so I can be here with them long-term. My book is called Chasing my Cure, which sometimes people interpreted as meaning that I already found it and it’s all good. It’s behind me. I found a drug that I’m doing well on but I can’t say with any certainty that it’s never going to come back. I still focus. Now I work at the University of Pennsylvania, where I focus my days on studying this disease and diseases like it. That way, we can continue to develop new and better drugs for the disease I had but also for diseases like it. COVID-19 and the sickest patients end up being quite similar to what happens in Castleman’s patients. We’ve begun doing COVID research. For me, I’m still pursuing the science of what’s going on here and how do we better treat it.

I’m motivated by Caitlin and my daughter. I’m driven and I feel so fortunate that I’m alive. This drug was sitting at my neighborhood pharmacy and no one had ever thought to try it. I have this incredible obligation. This sense that I’ve got to do my part to make sure that if there’s another drug down the street from your pharmacy that could help you, we do whatever we can to exhaust all options so that we don’t have to wait until something terrible is happening to someone you love to motivate the action and figure out that there’s a drug that could be helpful. That’s the other thing that I’m focused on these days.

What has this done for you in terms of changing the trajectory of your purpose and your contribution to life?

It’s changed everything about my purpose and my contribution. I feel like I live in overtime. That overtime mindset has run throughout every aspect of my life. It’s making sure that I’m being thoughtful about how I spend my time doing the things that are most important to me and will have the most impact in the shortest amount of time. That overtime mentality has fundamentally changed who I am. There’s a mantra related to it that I like and that’s, “Think it, do it.” It’s the idea that, sometimes, we think about doing something and then we talk ourselves out of it. We’ll do that next year or that’ll never work. I’m not going to be successful at it. I feel that it’s so important that you think it’s something that should be done.

I’m not saying we should do everything we think but if it’s worthy of being done and you think it, don’t talk yourself out of it. That’s been a big change for me. I used to talk myself out of a lot of stuff beforehand. “They can hold off. That’ll meet something for next year.” I try to talk myself out of the important stuff a lot less now. I try to turn my hope into action. When I hope for something, I try to start doing it. What can I do to get me closer to the thing that I’m hoping for? One of the last things is something that I started to learn from my mom. During tough times, we’re often encouraged to look for silver linings and say, “In the midst of COVID, it’s been awful but I’ve got time with my wife and daughter in ways that I wouldn’t have otherwise.”

My mom used to encourage me to not just look for silver linings but look to create silver linings too. In the middle of a tough time, don’t say, “What’s something that seems positive?” It’s to say, “This is tough time. What can I do that would make this positive for someone else or for someone that I love?” All of those things, which I try to go into in real depth in Chasing my Cure because I feel so lucky to be alive. I want to get these messages out. It changed who I am. I feel like I got to get these messages out, which have changed who I am.

I believe that every life is so important. There’s a purpose and a contribution that comes with every life. Our responsibility is to allow the universe to guide us in the right direction so that we find out what that is and nurture it in order to bring it forward and you’re certainly doing that. When you talk about your story, the awareness that you’ve brought to it, a drug that the experts may have seemingly forgotten about, is incredible. I think about other people who may be suffering from this disease that may have been in the same situation but now they have hope. Maybe they’re using this drug. You’re looking for other drugs that may be just sitting on a shelf that we’re not thinking about.

For other people that may be dealing with this,and this makes your life so significant. Not just for you and Caitlin, your kids and your family but for those kids, families, wives, spouses and children of other people who otherwise would have passed away had you not brought this awareness. I think about the people who did pass away before you made the step and this thing happened in your life. This experience happened in your life and now you are the pivot. You’re the point of change for a lot of people. You could have given up or not fought. You could have said, “This is it.” We don’t know the impact of our decision.

If I had just given up, I would’ve never known about what’s giving up on. I would have said, “I’m giving up on an extra month or two of life.” At most, what can I do to find something that could help me? I’m throwing in the towel but I would’ve had no idea that I would be given up on time with Caitlin getting married, having a kid, finding a drug that’s helping other people and coming up with a new way to think about research. These are things that I would have no idea and passed. I hope that my dad, my sisters and Caitlin would think about me occasionally but hopefully, they thought about me a lot. That would’ve been it. I would have never known what I was given up on by not continuing to fight. No matter what, you got to hold out hope and you got to hope for the biggest things possible. Everything can come together and then you have to start thinking about what can you do to make those big things come possible.

Energy flows where focus goes. Share on X

What would you want to pass along to other people? Obviously, not everyone will go through that situation or what you’ve experienced in life. I would like to say we all have our proverbial wheelchair or fight with cancer, you name it. Everyone has something. What would you say to someone who’s dealing with something traumatic, debilitating, life-changing or causing a level of uncertainty that seemingly unbearable at this point? What would you say to them?

I’d probably go back to some of the things we talked about. We oftentimes like to talk about how we’ve all got it in us. We have to find the strength. I’m more of the mindset that I think it’s there but it needs to be nurtured and supported. Don’t try to take it all on yourself. Lean on your family. I literally would get strength from seeing my dad, my sisters and Caitlin. That gave me strength. Knowing that they were there, pulling for me, would do anything that they could for me, I needed to make it through this and how tough it would be on them.

The first thing is leaning on the people that you love. That’s probably been the biggest thing during the toughest time. The people that I love and that love me leaning on them and being physically present with them. During the times of COVID, it’s hard. We still do Zoom and FaceTime with my dad and my sisters. That’s important. One, lean on the people that you love because they can give you a lot of strength. Two, what is it that you’re hoping for? What’s that vision for the future that you want so badly? All of us have goals and visions in front of us.

Even if we don’t appreciate it, it’s like, “What do you think about before you go to bed? What’s that thing that’s in the future that you’re thinking about?” In my opinion, the next thing is once you’re there, once you see what your vision is, start taking it one step at a time. What is it that I can do now and the next day and then map it out? What can you do? Start doing it. Even though I’m doing well and I was fortunate that this drug worked for me, I know that there was a high likelihood that this drug wasn’t going to work and that no drug was going to work for me but I wouldn’t do anything differently because I’m fighting and continuing to push for what I want, what I believe in and what my vision is.

It’s as important as whether or not you get there. There are no guarantees but if I hadn’t made it to the other side and defined this drug, I would have been so much more proud that I went out swinging, literally, on the way down. I took as many swings as I could and I still went down but I took all the swings I could. Iif we look back on a challenge in life, that’s something that all of us were going to feel better at our end days if we know that we took all those swings.

I think that is so profound. I have the same sense of it. I knew that it was a very slim chance of walking again but I was going to give it my best every single day. That was a coping mechanism for me, to be honest with you. It made my day. I felt better about what I was going through because I knew that day is up but I fought the hardest hill to beat this. I was praying, hoping and doing my part. I know at the end of the day, I’ve done everything that I can do. I’ve given it up and turned over every single rock.

I’m getting chills thinking about that because you’re right. You can only do so much but if you did as much as you can do, at least for me, that gave me peace of mind saying that, “I’m not going to stress about whether this drug works or not or this disease comes back because I’m doing everything I can do.” If I wasn’t doing everything then I could be stressed. It’s like, “Should I do this or should I do that?” For me, I was able to take the weight off my shoulders and say, “I’m doing everything I can do. If it’s not going to happen, it was not going to work out. I did everything I could.” It sounds like you were. You did the same thing.

That’s how I got through. That’s how I remain mentally sound and emotionally stable because I did that every single day. For someone reading this, you know whether you’re giving it everything or you’re doing all you can do. The people around you may not know and they may pacify you and say, “It’s okay that you don’t do this or you don’t do that.” You know at the end of the day whether you’ve done it or not. If it wasn’t for that envision and having that support system, I don’t think I could have made it through either. I don’t think it would have happened, not make it this far anyway.

Those are powerful things. Vision is one of the biggest proponents that helped me feel my way through what I was going through in it. That was something that I held on just like you and currency. It was everything if it wasn’t for being able to see myself doing things like this. I was young. I wanted to have my own house, have my own job, be independent and be in a goal. Before it was, I want to go to a film and do all this stuff. I wanted to live life, be able to earn money, buy myself a place to stay, say that I’d done it and have my independence. If I wanted to leave the house, go to the store and buy a loaf of bread, I could do that without needing help. That’s what I wanted. I wanted the ability to do that.

That’s what I envisioned. It wasn’t anything fancier or great. It was that simple little thing that drove me every single day. It’s funny when you’re going through a traumatic situation like this, how certain things that were so meaningful at some point in your life don’t mean anything. It’s those little things that become the most meaningful things. Getting married to the woman of your dreams. It was anything and seeing yourself to spend with family and interacting with them. It’s meaningful.

I think about a couple of parallels that speak to, at least, resonated with me for what you’re saying. One of them was when I was sick in ICU. My organs were shutting down and I was bed-bound for weeks and weeks at a time. I remember occasionally, I would wake up and I could see someone walking by the room. I remember some of the ways that you are. I’m sure very similar to what you felt, watching them walking and it was like, “I would love to be able to walk out of this bed.”

GCM 204 | Castleman Disease

Chasing My Cure: A Doctor’s Race to Turn Hope into Action; A Memoir

When you aren’t dealing with an illness or injury, walking is the last thing that anyone is cherishing. It’s like, “I’ll just walk from here to there. I would watch these doctors and nurses if I could get up and walk.” What that would mean if I could get up and go. Things like that, to go the grocery store. That sort of stuff drives you. When you’re on the other side, like you and I are on right now, we both know there’s no certainty in life but it means we appreciate those things more than we did before. I’m sure that going to the grocery store means more to you now and me being able to walk through the halls of this hospital that I used to dream that I could walk through like I was watching this nurse’s walkthrough makes a difference.

To the other side of your point, which is stuff that did seem important no longer seems important. It makes me think about this one experience. It was New Year’s Eve of 2010. At this stage, I’d been in the hospital for about five months. I had been really sick and finally, it’s New Year’s Eve. I’d got much of chemo about a week before. I was feeling much better. My dad and I decided to take a walk around the unit that I was on in this hospital. We passed the family waiting room and there was a gentleman who was clearly drunk. It was New Year’s Eve and he clearly had been drinking way too much. Into his seat, he was swaying in his chair. On our next lap around, we saw this guy was on the ground. He’d fallen out of his chair. My dad ran over to him and helped him back into his chair. He looked at my dad and me. There I was, I had this IV pole. I had a mask on because of the chemotherapy. I had a huge belly because my kidneys and my liver had shut down. I had fluid everywhere. He said, “Thanks so much. Good luck to you and your wife.” We’re like, “Wife? What is he talking about?” I looked at my belly. I realized he thought that I was my dad’s pregnant wife and then we were walking laps and deliver our child on New Year’s Eve.

I turned to my dad and said, “Dad, you’ve got an ugly wife.” The two of us bent over laughing and we were crying. It’s like six months before or a few years before when I was a college football player. Someone would confuse me as pregnant with my father’s pregnant wife. I would have been pretty offended by it. I work out all the time, exercising and eating more like, “You think I’m my dad’s pregnant wife?” Here I am a few years later, just laughing. In the middle of tough times, I had a lot of fluid in my belly. Maybe I did look like a pregnant woman at that time. It made me laugh because I don’t know if I would have laughed earlier.

It’s funny how challenges can seem so debilitating, negative and struggle in life but at the same time, they can bring much joy, sentiment, understanding, valuing, clarity and worthiness. All of those things that we sometimes take for granted when we’re not in the midst of a challenge or some type of traumatic event. It brings us back to what matters most. That’s the appreciation for that. David, this has been a wonderful conversation. I am delighted to spend time with you. Thank you for sharing your story with us, being open, allowing us to see inside your life and the experience that you’ve had and how that has been impactful to you and to others. I’m happy for you and I’m rooting for you as well, David.

Me for you, my friend.

Thanks. I appreciate it. Before we let you go, one more question I want to ask you about bouncing back from adversity, dominating challenges and winning. What would you leave with us as it relates to being able to do so in life?

The first thing is appreciating that we’re all on overtime. I can tell that I’m on overtime because I’ve got the battle wounds and the scars all over my body to remind me that I’m on overtime but the reality is we’re all in overtime. None of us have any certainty about tomorrow. This overtime mindset can be the game-changer mentality mindset to make the most of every moment. This overtime feeling is something that we can all leveraged to bring out the best in us. The next thing I’d say is that we’ve got to be hopeful, prayerful, and think about things in the future that we want but then we’ve got to ask ourselves, what can we do about it now?

The last thing I’d say is that it takes an army to overcome challenges. There’s a lot out there that, like you, can find it inside of you and I think you can but I do think that it takes a team. My book is called Chasing my Cure but I think that that was the wrong title. It should be “Chasing our Cures” because it’s been so many people. It wasn’t just me working on my own. I had family supporting me, researchers I was turning to and friends that were part of the effort. It hasn’t been me and it’s never one person ever. Maybe there are some examples of people out there. I’m certainly not able to do it on my own. There are people out there who can do stuff on their own but I think that it’s about us, our, we and not feeling like you have to be a game-changer on your own. A quarterback needs an offensive line. We need a team and I think that’s important.

Do not just look for silver linings, but look to create silver linings, too. Share on X

How can they find the book if they wanted to read your book, learn more about you and connect with you? How can they find you?

Chasing my Cure should be available at your favorite local bookstore. It’s also on Amazon. It’s a hardcover. It came out in paperback on January 26, 2021. There’s the audiobook of me reading it in eBook. Any way that you want to check out the story. In addition to reading it, I hope you also helped to spread the word. This has been a journey that I wish I never went through but if I’m going to go through it, I want to share the lessons from it. I hope that your readers will be a part of this army and helping to spread the word about Chasing my Cure. You can also find more info about it at ChasingMyCure.com where you can get more info about the book and all the places you could get it.

David, thank you for coming to the show. Thank you for sharing with us. It’s been a wonderful experience. I appreciate you.

Thanks so much for having me, Rodney. I appreciate it just as much. It means a lot.

There you have it, folks. Another successful episode of the Game Changer Mentality Podcast. You guys have heard me say so many times that we are a team. I need you as much as you need me. You have to play your role, I have to play my role and I need to learn from you. You learn from me. You have to contribute. I have to contribute because we all want the same thing. This has been a great example of what that means. If you had any doubt or misunderstanding about what that means, David is an example. He’s the epitome of contributing, bringing his gift and creating an impact in life. To think about it, we all have a cure that we’re chasing. We all have something to bring to life that’s going to have an impact, not only on our lives but in the lives of others.

I think that’s the most important thing. Sometimes, we feel like we want a score because we want the million dollars, material thing and all of that stuff. That’s great. There’s nothing wrong with those things. Those are results of you get into a certain place but the most important part of that is what a driver for me is the impact, the inspiration, the life you may see or the difference that you may make. That’s truly changing the game. That’s how you change the game. You change how someone else completes a game or maybe they didn’t even want to get in the game. I can imagine in David’s case, there were some people that couldn’t even get in the game but because he played his game the way he played, now they can play and bring their contribution. You never know what impact that will have on you. Play your game well. Play to win. Until next time. Peace and love.

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About David Fajgenbaum

GCM 204 | Castleman DiseaseDavid Fajgenbaum, MD, MBA, MSc, is a groundbreaking physician-scientist, disease hunter, and author of the national bestselling memoir, Chasing My Cure: A Doctor’s Race to Turn Hope Into Action. Fajgenbaum went from being a beast-like college Quarterback to receiving his last rites while in medical school and nearly dying four more times battling Castleman disease. To try to save his own life, he spearheaded an innovative approach to research through the Castleman Disease Collaborative Network (CDCN) and discovered a treatment that is saving his life.

One of the youngest individuals ever appointed to the faculty at Penn Medicine and one of the top 1 percent youngest awardees of a leading NIH grant, Dr. Fajgenbaum is advancing immunology research as Director of the Center for Cytokine Storm Treatment & Laboratory (CSTL), spreading his approach to other diseases such as COVID19, and sharing lessons he learned about life, hope, and resilience from nearly dying through Chasing My Cure. Dr. Fajgenbaum has been profiled in a cover story by The New York Times as well as by Good Morning America, CNN, Forbes 30 Under 30, and the Today Show. He holds a BS from Georgetown University, MSc from the University of Oxford, MD from the University of Pennsylvania, and MBA from The Wharton School.

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