Author Chat with Tim McDonald

In this Author Chat, Josie and Brad welcome Tim McDonald, stage IV colorectal cancer survivor, liver transplant recipient, patient advocate, and author of From Patient to Advocate: Turning Survivorship into Impact for Healthcare Advocates.

Tim shares how his diagnosis led him from self-advocacy to broader patient advocacy, including the search for second opinions, coordination between cancer and transplant teams, and the importance of finding providers willing to communicate across institutions. He discusses liver transplantation for select patients with colorectal cancer liver metastases, the emotional weight of survivorship, survivor guilt, grief, and how advocacy can be both meaningful and sustainable.

The conversation also explores Tim’s book, which serves as a practical guide for patients, survivors, and caregivers who want to turn lived experience into impact. Tim reminds listeners that advocacy does not have to be public or large-scale; sometimes it begins with helping one person feel less alone.

Links relevant to this episode:

• https://manuptocancer.org/blog1/bullock-named-interim-executive-director-man-up-to-cancer
• https://thegogiver.com 
• https://pmc.ncbi.nlm.nih.gov/articles/PMC11753392/
• https://www.urmc.rochester.edu/news/story/liver-transplant-outperforms-other-therapies-for-colorectal-cancer-that-has-spread-to-the-liver
• https://www.cancer.gov/research/infrastructure/cancer-centers

General Links:

• Disclaimers: https://cancersurvivormd.org/disclaimers/
• Brad Buchanan: https://linktr.ee/bradthechimera
• G [Josie] van Londen: https://linktr.ee/cancersurvivormd
• CancerBridges: https://cancerbridges.org/

Transcript

Welcome and Introductions

SPEAKER_02 0:00

Hello, everybody! Welcome to another episode of Cancer Survivor MDE. Today, Brad and I are very fortunate to have a special guest, an author and a cancer survivor with us, Tim McDonald. And I'm going to let Brad introduce him to you.

SPEAKER_03 0:22

Yeah, thanks, Josie, and delighted to welcome Tim McDonald, who's a stage four colorectal cancer survivor, liver transplant recipient, patient advocate, and author of a book called From Patient to Advocate: Turning Survivorship into Impact for Healthcare Advocates, which is a terrific book, and I've been enjoying it tremendously. Before cancer reshaped his path, Tim spent years working in nonprofit and association community building and membership engagement. Since his diagnosis, he's transformed his personal experience into advocacy work, focused on survivorship, patient empowerment and helping others navigate the healthcare system with greater confidence and hope. Tim is a is the Florida chapter leader, I believe. So Tim, I thank you first of all for joining us. I know you're busy with book stuff, which is both good and challenging.

SPEAKER_00 1:25

Well, it's just great to be here, Brad, and I really appreciate you and Josie having me on. It's just great to be able to connect with you anytime I get a chance.

Turning Pain into Purpose

SPEAKER_03 1:34

Well, yeah, and we are honored to have you. So in your book, you described turning pain into purpose. What do you think helped you make the transition from patient to advocate after your stage four colorectal cancer diagnosis? And why and why is the answer man up to cancer? Um sorry. I added that last part.

SPEAKER_00 1:58

Well, it's funny because actually Man Up to Cancer was the first support group that I joined, and it was literally within about a week or two after I was diagnosed. So it all happened very quickly from hearing the word you have cancer to joining Man Up to Cancer through a connection. One of my friends, don't ask me how he knew Joe Bullock, but as we like to say, a man up to cancer, blame Joe. But to answer your question about how I turned from patient to advocate, it was really, I didn't realize it at the time, but I'm a firm believer that we can learn from anything that happens to us. And one of the things that I knew within a couple days of hearing those words, you have cancer, was that this happened to me because I needed to start creating awareness for others so that they wouldn't have to go through what I was about to go through. Now, today I will call that advocacy. Back then I was just calling it creating awareness. But then I got into my treatment and started hearing that I only had three years to live, that they were going to make my life as comfortable as possible, that I'd be on chemo for the rest of my life, that I wasn't a surgical candidate. And you know what? I just didn't believe any of that. I mean, I believed that they felt that way, the people telling me this, but I just didn't feel like that was my story. And I started looking into other support groups and learned about a liver transplant for metastasized colorectal cancer patients in about February. So about three months after I was diagnosed. And from that point, I really started focusing on understanding how important it was to become you had to become your own best advocate in your own health care. And then that started me understanding like just how many people had helped me, especially in man up to cancer, but also in in other groups that I was in that helped me learn about liver transplants, that showed me that having stage four wasn't a death sentence, that there was guys in man up to cancer who were colorectal cancer patients who had lived for well more than five years that had stage four colorectal cancer. And I was just like, they were an inspiration to me. And so it really just I started understanding early on just the power of just being there and being present and sharing your story and how it could impact other people.

SPEAKER_03 4:27

Well, I mean, that's a really powerful sort of beginning of your advocacy career in that way because you were an advocate for yourself, basically. That's how it started. You had to educate yourself and find out what was going to be best for you to survive. And you know, I think some people draw this rigid distinction between patient life and advocate life. But, you know, and I I I think I was in a somewhat similar situation where I had a very rare form of blood cancer that they thought was indolent or, you know, basically slow moving and it was confined to my skin and not a big deal. But I was like, I'm sick. Like I am waking up with cold sweats four times a night. I've lost a ton of weight. Something's gotta happen here. But there was no treatment available. I nevertheless, I was still trying my best to advocate for myself. I was emailing like every hematologist I could find in California anyway to say, help, you know, something, something needs to be done. But anyway, so and and as my blood cancer morphed into, you know, uh something very aggressive, uh, you know, that surprised everyone, I then had to be an advocate for myself in the hospital. Having to be one's own advocate is probably the best training imaginable for becoming an advocate in the broader sense in which you become an advocate, which is to help other people, obviously, and to sort of improve their healthcare ecosystem as much as humanly possible. So anyway, um that's a very powerful origin story for for Tim McDonald, advocate.

SPEAKER_02 6:13

Brett, um for those people who are new to our show, uh Brett has his own episode describing his health history. Actually, several episodes where we delve into different parts of his journey. I'll put some links in the show notes. And uh what Brett was alluding to, but this is me as the physician uh putting on my physician hat, Brad had to go to different facilities to uh get his

Finding Options and Second Opinions

SPEAKER_02 6:45

care in the end. And I wonder to him, is that the same with you? Did you have to go to different facilities to get some of your care, in particular your liver transplant, I'm guessing? How how did you go about that? Because some listeners may may feel hesitant to divide their care between different institutions.

SPEAKER_00 7:08

Yeah, no, that's a a great question, uh Josie. Um I really feel and I came to understand this later, that I had an oncologist, right? Talk about different providers. I mean, I went through this is the my third oncologist, and I still have, but it took me like two months or a month and a half to find that one that I stuck with, you know. And and so just even advocating for finding the right person that is gonna be your oncologist is one step. But then once I had them and I was seeing good results from my chemotherapy, I was, you know, heading in the right direction, but I still wasn't getting any other options. And when I had asked about it, it was like, well, not right now. And I've come to learn that oncologists are great in oncology, but they're not surgeons. So they're not going to be the experts on whether you can get surgery or not. Just like a radiologist can't tell you about surgery and a surgeon can't tell you about oncology, right?

SPEAKER_01 8:10

Let me clarify for our listeners. In this context, with oncology or oncologist, Tim means medical oncology and medical oncologist.

SPEAKER_00 8:20

And so it's like, you know, understanding where all these pieces fit in your puzzle is basically the job that you have to take on as a patient. And, you know, through that process, I learned about the liver transplant, and I learned about it from a surgeon up in Rochester, New York. They were doing more liver transplants for metastasized colorectal cancer patients than anywhere else in the world outside of Norway, which is where it was developed. And so when I made the appointment to go see them, or you know, it was via Zoom, my first appointment, but when I had that appointment set up, I actually made an appointment to see my oncologist here and told them what I was going to be doing. I went to a comprehensive cancer center. I know it's specific to the U.S., but we have National Cancer Institute. And if you belong to those, you can qualify as a comprehensive cancer center. It's the only one in Florida. That's where I go, right here in Tampa. And the reason why I like that place and why I settled on it was not only because of my oncologist, but also because they take a team approach, meaning all my scans are done there, all my labs are done there. You know, if I need to have a biopsy done, it could be done there. If I need a uh colonoscopy, I can go there. They even got their own urgent care that I've uh had the opportunity to visit a couple times during my treatment, you know.

Coordinating Care Across Cancer Centers

SPEAKER_00 9:43

So everything that I needed was under one roof, one bill, not multiple bills, but they don't do liver transplants. So when I got my liver transplant surgeon, my goal, and it was even my transplant surgeon's goal, was to be connected with my oncologist and have them communicate and talk with each other because they were both part of my care team. They weren't separate, even though they worked at separate facilities. And so that's how I did it. And I will fully admit that for the first couple of months, because most patients don't have their doctor's cell phone numbers. And if you call the main number, you're not gonna get your doctor, you're gonna get a somebody, a scheduler, a you know, a nurse, uh, you know, somebody that answers the phone. If you send an email or a message through your patient portal, you're still probably not going to get directly to your doctor, right? It's gonna go to somebody else who's gonna triage that message and decide whether your doctor needs to look at it or not, or whether they can pass it along to somebody else to answer. So, you know, my goal was to try and get them to talk with each other, but I didn't have either of their cell phone numbers. But after about two months, they finally got to a point where they set up a time to talk, exchange cell phone numbers, and now they were texting back and forth and communicating with each other. And that made all the difference in the world because everything was so frustrating for me when I went to my local care, even though my transplant team up in New York was telling me you need to get a biopsy on this lymph node in your collarbone, I'd tell my team here in Tampa and they'd be like, I don't even know if we can do that. It's so small. And I'm like, No, I need to, you don't understand. I need to get this done. If I need to fly up to Rochester, I'll go do it. But why should I have to go do that when you guys are capable of doing it? And then finally, when they talked, all of a sudden it was like, oh yeah, we we'll do that. It's gonna be a fine needle one, it's gonna be difficult, but we'll get it done for you. Ever since that point in time, I don't even need Rochester to send down an order to my team here. I just literally tell my my oncology team, here's what I need done, and they get it ordered for me because they know it's part of my transplant process to get to a liver transplant. And so it can be uniquely challenging trying to get different providers to be communicating with each other. And I feel I was fortunate, even though it took me two months to get them to talk, that they actually were talking. But that's another point that I would bring up to anybody listening. If your team is not willing to talk to another team that you're working with, maybe it's time for you to look for somebody else and get a second opinion and get somebody else on your team who's willing to be a team player, not just want to take you as their patient and hog you for themselves. You want somebody who's willing to listen to you that's going to understand what you want, even if it's not what they provide, and then be able to communicate with the other team member that you bring in to help you. And so those were all very important things for me. Very frustrating at the time, but after it got worked out, it made life so

Navigators and Transplant Support

SPEAKER_00 12:40

much easier for me.

SPEAKER_03 12:41

Yeah, I had similar frustrations even within the same medical group in Sacramento, where I had a team of pulmonologists who were looking at my collapsed lung and who were talking to or not talking to my oncology team who are blaming the pulmonologists for the collapsed lung. And we needed, we were fortunate to have a nurse navigator, someone who I don't know if you had someone like this, Tim, but you know, I was extremely ill, my wife was overwhelmed, and we really depended on the nurse navigator to tell us what the hell was going on, first of all, why our two teams were working under the same institutional auspices, but unable to communicate effectively with each other and advise us on how to proceed from there. Did you have someone like that in Tampa who I did not?

SPEAKER_00 13:37

The first time I was exposed to that was when I started working with my transplant team up in Rochester. They do have a transplant navigator. And her and I are still in contact to this day. I usually go up there once a year to, you know, on my transplant anniversary to, you know, meet with my surgeons. And she's the one who coordinates all that. So her and I still, you know, still communicate to this day. But she was like so instrumental and kind of like whenever I had a question about anything about my transplant, she was the one who I know I could call and she would connect me with the right people or get the information that I needed and pass it back on to me. So, yes, definitely, if I were to go back and have that knowledge when I started my whole journey, I would have insisted on knowing

Life after Liver Transplant

SPEAKER_00 14:22

who my nurse navigator was at my cancers are here in.

SPEAKER_03 14:27

How can you tell us more about the liver transplant? You know, I had a stem cell transplant, obviously, a very different experience, but you know, for someone you know who is already dealing with cancer and then having a liver transplant on top of what you'd already had to deal with, how did that go? And and what, you know, are there lingering side effects or how are you doing with that?

SPEAKER_00 14:50

Well, overall, I'm doing extremely well. I had no major complications from it. You know, I am on immunosuppressants for the rest of my life, and the immunosuppressants cause you to have high blood pressure and high cholesterol, which means I'm on high blood pressure and high cholesterol medications, and I need to be careful about which ones I take because I also have a very low resting heart rate now, and that means that you know they don't want to increase doses of certain blood pressure medications, otherwise, it'll reduce my heart rate even lower. Yeah. So it's like, you know, adding on additional medications, doing all that. I also have anemia, so I take medication to help me with my, you know, B12 and folic acid and you know, baby aspirin to prevent clotting because I have some minor plaque buildup from all the chemo is on. And so it's like, you know, yes, I am on medications. I do, and I won't say this is from the liver transplant, but probably from two and a half years of chemo, I do have arthritis both in my, well, probably all the way from my feet up to my neck, you know, uh starting to creep in. Um, and sometimes I get gout flare-ups um and never had those until after my transplant. But other than that, it I can't really complain. I really feel like, you know, especially compared to going through chemo treatments, I have so much more energy now. I like to say I'm still kicking, just not as high, you know?

The Practicality of Liver Transplantation for Colorectal Cancer

SPEAKER_00 16:13

And that's kind of how I equate it. But I will say I do want to point out that, you know, liver transplants for colorectal cancer patients are fairly new in the U.S. They're about eight years old. And, you know, when I started looking four and a half years ago, there were 14 centers in North America doing them. Uh, 12 were doing live donors, and two are doing deceased donors. Now I'd say there's close to like 70 centers in the U.S. doing them, and probably more than half are doing deceased donors. And that's because the technology that has come up in the last few years to actually take like a subprime deceased liver and make it healthier to put in a in a healthy body has been present. But the other thing that they're starting to learn is colorectal cancer patients are typically healthy patients outside of the cancer that they have in their liver. And so when they put a subprime liver in a healthy host, as opposed to somebody who has liver disease where your whole body starts being ill because of your liver being diseased, they can't take those livers, but colorectal cancer patients can. And what happens is that liver actually regenerates and gets healthier as it's in the healthy host. And so that's why a lot more are doing deceas donors. Now, I can spend a whole like day talking about liver transplants, but I just want to set the stage for this isn't for every person that is stage four that has polorectal cancer that gets metastasis to their liver. And it's not an easy path to go down, even if you're going for a deceased donor or a living donor. There's no, if you're a living donor, there's no list to get on. You are responsible for finding your own donor. If it's a deceased donor, you have the challenge of having to be near or be able to get to your transplant center within 24 hours when they give the call to be able to get it. And the other thing about that is they say if you're on cheramotherapy, you want to be off of chemo for about six weeks before a surgery. And if you just had chemo and you get a call that there is a liver available and you're getting it the next day, you're getting surgery maybe a day or two after you've had chemotherapy, which isn't the ideal situation for a major surgery to happen. There are some a lot of particulars that go into this whole thing. So I'm just I just want to throw it out there because if somebody's listening and say, oh, I can just get a liver transplant because I have metastasis to my liver, you know, it's not that simple, but it is a possibility for certain select patients that are colorectal cancer patients.

SPEAKER_02 18:49

Yes, I was gonna use that word. There's a whole selection process that somebody has to go through to make it ethical, safe, and accessible for everybody. One of the things I wanted to ask you, Tim, is how long ago were you diagnosed with metastatic disease? And how long ago was your liver transplant? For some people who are listening and looking at you, they're wondering, uh, you know, wow, he looks really good. How long ago was that?

SPEAKER_00 19:19

Yeah, so I was diagnosed in November of 2020. So it's been five and a half years since I was diagnosed, and it was um three years ago this month that I got my liver transplant. So it's been three years of being no evidence of disease, because as soon as they took my my liver out with the remaining tumors on it, uh, I was no evidence of disease. And so that was so two and a half years of chemo, three years of being NED after my liver transplant.

SPEAKER_02 19:48

Wow.

SPEAKER_03 19:48

That's amazing.

SPEAKER_02 19:49

Yeah, so happy for you, although happy is not the right word to use, but medicine and science need to continue to progress. Yes. To continue to find cures for all these diseases that at the current time uh are not all curable. But Brent and Tim, both of you are success stories.

SPEAKER_00 20:12

Well,

Why is Advocacy Needed

SPEAKER_00 20:13

that's that's a big reason why I still advocate to this day, is because we do need we need more research to understand, we need more research to find cures, we need research to find less impactful treatments for patients so they don't have as severe a side effects as they have to go through. So, yes, I I a hundred percent agree with you, and and it is a true, I I am very fortunate to to be here and to have been accepted into the transplant program and to have had a successful transplant with minimal complications, if no, I mean really no complications whatsoever, which is very rare for a liver transplant.

SPEAKER_02 20:53

Yes. Tim, I'm going to ask

Anyone Can Be an Advocate

SPEAKER_02 20:56

you a question with sort of flippant because you're more than your disease. We are all more than our disease. Okay, you had a career before you got your disease. But then people who are listening are like, well, I would like to become an advocate. So what I'm trying to ask is, can you explain what your career was before this? And if you think that that career prepared you to become an advocate, and can anybody become an advocate? Or do you need to have a certain mindset, a certain career or training in your past in order to be able to do that?

SPEAKER_00 21:33

Yeah, well, I will tell you about my career path after I answer the second part of your question, which is I think that all of us, no matter what health condition we're going through, whether you're a caregiver or the patient yourself, is you have actual lived experience. You are the only one that has been going through your disease with your, you know, in my case, my tumor type, right? My biomarkers were unique to me. I don't share my DNA with anybody else. So my condition was mine. The treatment path that I went through is mine alone. Nobody else shared that treatment path with me, right? Like they might be similar, but not exactly the same. And so my experience is all I need to become an advocate. I don't need anything else. Now, I will answer the first part of your question and say that even today, I still do what I did before I had cancer, which was I basically run and help with strategy for online communities. So my job in simple terms is to bring people together around a shared purpose to create a shared outcome. And I think if we look at advocacy, there's so many natural tie-ins to that because you do really come together over a shared purpose, and you are trying to create a shared impact when you're working. Now, advocates might be focused on fundraising, they might be focused on, you know, awareness and storytelling, they might be focused on legislative change, they might be focused on research, you know, advocacy. And but we're all trying to basically do the same type of things with big groups of people. So does my past job and my current job actually help in my advocacy? Yes. But do I do I need that to become an advocate? Absolutely not. Now, I am also a person who's very comfortable being vulnerable, being very comfortable sharing my story. And that I think is one thing that you need to be able to do because it's very hard to advocate if you're not letting people in to see what you've been through and what you're doing. And so I really think that, you know, the question about your personality, some people are very closed off and don't want to do that. And you can still be an advocate in certain ways without having to get to like, I don't need to get on podcasts, I don't need to get on social media to be an advocate, right? I could do research advocacy and just sit on private Zooms with pharma companies or biotech companies or professional organizations and just, you know, share my story with a small group of people and not publicize that I'm doing any of this. You can still do that with advocacy. Um, but my advocacy is I like showing, I like bringing people into more advocacy. So that's where my community building kind of comes in is I don't just want to do this for myself. I want more people with me because I know that the more people we have around the table, the more our voice is going to be listened to.

SPEAKER_02 24:40

Yes, uh, Brett, I know it's your turn to ask a question, but can I ask one more question, Brett?

SPEAKER_03 24:47

Yes, you can, Joseph.

SPEAKER_02 24:49

Okay.

SPEAKER_03 24:50

And I do have a question loaded and uh loaded.

SPEAKER_02 24:52

Yes, I can read your face, Brett,

Why He Wrote the Book

SPEAKER_02 24:55

but tell us how your book fits in. Like, what is your book about?

SPEAKER_00 24:59

Yeah, well, and and I'm so glad you asked that because I think so many cancer patients write what I would call memoirs, right? Like they write about their story and what they went through and how they felt and and all this. And there's nothing wrong with that. I mean, it's perfectly, I think it's a very healthy outlet for the people who do that. But really, the the purpose why I wrote the book was because I had so many people coming up to me last year asking about how they could do this, right? Like how they could go to these conferences, how they could get on these research panels, how they got to be like a district lead for a call on Congress. My lesson that I learned a long time ago was if somebody asks you the same question three times, you should write it down. Because each time you answer it, it takes you 15 minutes probably to answer. And three times that's 45 minutes. So if you just take and write that down, now the fourth person that asks, all you need to do is share a link and they'll be able to read it. But there's one thing I knew about advocacy, it was no way gonna fit into a single blog post. It could probably be like 50 or 100 blog posts, and I don't think anybody is gonna take the time to read a hundred different links in an email. So my thought was, and I've been told for decades that I should write a book, and I'm like, you know what? This is the perfect thing to write a book about. And so what I really wanted it to be is a guidebook for exactly those people, the people that are interested in getting involved in advocacy or wanting to learn more about it to see if they want to get involved in it. It's about somebody that just got into advocacy who wants to kind of take it to the next level. And it's about showing people like the different paths you can take, aligning that with what you're passionate about, what you're good at doing, and then also recognizing some of the pitfalls, some of the conflict that you might encounter and how to deal with those things and the warning signs to be aware of. And so you'll see a lot of pharma companies present that they need advocates to come in and help them on a clinical trial that they're developing or a research program that they're working on. I feel like sometimes they take advantage of patients instead of partnering with patients. And so I give some of the warning signs in the book about how to how to spot that, how to address it if it does happen. And and so, really, this is a guidebook for anybody who's interested in getting involved in advocacy, but it does tie in with my experiences, right? I think that that's another thing too, is like I didn't want to come into this just relying on what other people were telling me. I couldn't have done this when I was first diagnosed and first getting into advocacy, right? Because I didn't have the lived experience to be able to share. But now I do, and I want to share that with as many people as I possibly can.

SPEAKER_02 27:56

Thank you.

SPEAKER_03 27:57

Well, yeah, Josie, you you kind of stole my question. Um, but I will uh ask a variant follow-up to Tim that basically, you know, uh my sense of your book, Tim, is that it is filling a void in the current uh literature on this topic. Was that your sense too? Because like for me, uh you know, I've written a few books and they're really there are two main motives for writing a book, uh, as far as I'm concerned. One is that first, you know, the the initial patient uh narrative, right? I just I want to tell my story or I have something to say. Let's say we're writing a book that's different from the patient memoir book, like I have something to say on some other topic, and only I can say that thing. That's one good reason to write a book, or indeed anything. The second reason is there ought to be a book on this subject. And why not me? You know, and I've written a couple of books like that too. So as far as your motivation was concerned for writing this book, was it a little bit of both, or was it more like this really ought to exist and I might as well write it? And also I hope the writing process was enjoyable for you and to some degree therapeutic, but I'll let you comment on.

SPEAKER_00 29:20

Yeah, no, I I am I'm so glad you brought this up, Brad, because you know, my first thought was actually like when people started asking me, is there something out there that I can point them to, right? Like that they can go find this information out. And I didn't see anything. As a matter of fact, if I went on Amazon and typed in patient advocate, you find a whole because patient advocate is a profession in medical settings, and so you can become a professional patient advocate in a clinical setting. And there's probably a dozen books on patient advocacy for those professions, but there's none for the actual patient or caregiver or survivor out there that I could find. And so my book, I think, was the first one to actually be published that actually is for the patient, survivor, or caregiver who's interested in just doing advocacy work and getting involved and making a positive impact for the greater community. And and was it therapeutic? I wish I would have done this so much earlier. I'm already starting on another book that I had actually started a memoir or a manuscript on, like well before I got diagnosed. And it kind of ties in with a lot of the disease space because it was focused on fear. And it was before the pandemic, even that's why I put it on hold because the pandemic came and I knew there was a whole new thing to talk about when it came to the pandemic. And then I was diagnosed and I'm like, there's gonna be a whole thing to talk about. But I kind of put that on the back burner because it wasn't my passion. But after I wrote this book, I felt like it was so healthy for me to kind of get some of this out, you know, to not hold it inside. Um I mean, I'm bursting with so much information and so many stories of what I've been through and the people I've talked with and you know what I've seen and experienced through my journey, that I want to getting it out was much more than just replaying it in my head. And I think that really helped me. And I love the direction I'm going because it's gonna be completely different. I am really writing this one, not like as a guide, but more as a fable. The fable has a message, a really important message, but not one that is like, you know, here's how you walk through this. It's kind of a story that kind of brings you along, and at the end, you're gonna realize the lesson that is encapsulated in it. I don't know if you've ever read Bob Berg's of the Go Giver book, but I really love that book and the fable kind of format of it. And so that's the direction I kind of went was uh was writing it in that kind of style.

SPEAKER_03 32:00

Well, okay, that is a very intriguing uh tease for your next book, Tim. And I I look forward to that. Now, you do talk a little

Storytelling that Fits the Audience

SPEAKER_03 32:09

bit about storytelling as a form of advocacy. I wonder what if you have like quick elevator pitch for patients out there who say, Well, you know, I I don't really know how to tell my story, or how do I know what kind of story I should tell, either within the advocacy context, just broadly speaking, like sharing it with your friends and and family or whatnot, you know, just to sort of answer those questions that keep popping up. Or when you're actually facing a more of a professional medical audience.

SPEAKER_00 32:45

Yeah, I mean, it's so important because you know, the number one thing about storytelling is knowing who your audience is before you start developing your story, right? And so for me, when somebody used to ask me what's your story, I would start with, I got diagnosed this way, I'd walk through that, I went through all my treatments that I went through, I walked through my transplant, you know, it was all these things that I was talking about. And I quickly came to realize that when I'm in front of a medical team, they're probably interested in the fact they know that most stage four colorectal cancer patients go through chemotherapy or immunotherapy. So all I need to do is say I was in two and a half years of chemotherapy, they're gonna be more interested probably in my liver transplant because that's not something that all of them deal with every day. So I'm gonna speed through everything from diagnosis to my my treatment that got me to the liver transplant and then talk about my liver transplant, right? If I'm talking about, you know, getting screened, right? I see my friends on Facebook post about, you know, the prep for getting a colonoscopy and how horrible it is. And and my comment to them is do you want to feel like that every two weeks and even worse? Because that's what you're gonna have to do if you get cancer and you're on chemotherapy. Wow. And so, you know, it's remembering who you're talking to and kind of narrowing your the part of your story that's gonna make an impact. I mean, I go to DC like three times a year with different organizations to, you know, call on Congress, and each organization has different asks, and each time I kind of tailor my story to match the the asks that we have, you know, so it's not making up a story, it's just taking the element of my story that relates to what I'm gonna be asking for and sharing that part of the story. And so I think when we're talking to anybody, you don't have to be a professional storyteller because you've lived this, right? Nobody needs to train you on what you've been through before. But what you do need to keep in mind is who are you talking to? What point are you trying to get across and focus on that particular element of your story to make that happen?

SPEAKER_03 34:55

Yeah, well, I think that makes a lot of sense. That's kind of reading the room, right? Which sometimes is difficult when we're, you know, intimidated by a bunch of medical professionals who've learned a lot about all this stuff and and we've had to learn it on the fly, you know, just because our survival was at stake. And I know in my case, I tuned out a lot of medical information when it became overwhelming. You and I have a little bit in common in the sense that uh we've both had sort of like multiple different types of treatments for cancer-related stuff. And what I found as now coming back into the cancer advocacy community through manopticancer is that a lot of the things I learned when I was going through chemotherapy and radiation and so forth, even though I then got a subsequent illness after my transplant, I still have things to say about that. Right? There are still versions of my cancer story that are worth sharing with uh other people. And for a long time I had just decided since I wasn't in in danger from cancer any longer, I didn't have much to say on that subject. But you know, I think you're reminding me and everyone that just because uh a disease is in the rearview mirror for you personally doesn't mean that you have nothing to say about it, or doesn't mean that you have don't have the right to say something and that your voice is not going to be important. You talk a little bit in your book,

Survivor Guilt and Grief

SPEAKER_03 36:28

I think, Tim, about survivor guilt or feeling guilty. I don't know if you put it exactly that way, but you do talk about guilt uh in the sense of like who am I to keep talking about this stuff, right? But that you've learned to map the cancer in other communities that you can inspire other people just by the mere fact of having lived through this stuff and be able to talk about it. So I guess I'm wondering are there some of the darker emotions at play in your own motivations, like trying to do something worthwhile with that creeping sense of guilt or I don't know, yeah. Can negative emotions fuel your advocacy too, is what I'm asking, maybe.

SPEAKER_00 37:17

Yeah, I mean, it's so important, and I do focus on this in the book because I don't want people to come in with rose-colored glasses and think advocacy is all fun and rainbows, you know. There's a lot of hard work that goes into it, but there's also a lot of grief and sadness and depression that could set in. And I think you need to be aware of that, right? You need to understand, and I'm not trying to scare people away from advocacy, but what I found was I had a double-edged sword of being NED and having what they call survivor's guilt for cancer patients, meaning, like, I made it a lot of people don't. What right do I have now that I'm not in treatment to be talking to somebody who's actually going through treatment? And that is coupled with the fact that I am an organ donor recipient. Somebody else gave me a part of their body to still be here and be alive. You know, I have, I mean, truly, I have a second chance at life.

unknown 38:15

Yeah.

SPEAKER_00 38:16

What am I gonna do with that? How am I gonna make this different, you know? And that the first year, well, from six months to a year and a half after my transplant, I I mean, I was seeing a therapist because I was struggling with that, right? Like what I wanted to do with my new life didn't always include my wife, you know, and that was difficult. Um, and but just like anything in life, we we all have choices and we just need to prioritize what's important for each of us. And only we can do that work, right? Like we need to process that ourselves. Nobody can do that for us. Um, but I think that, you know, what I've come to learn is especially with the grief aspect of this, is, you know, so many of us, and you you've heard it and you see it all the time about, you know, carrying their weight, right? Like you carry the weight of people that you've lost on your back. And it's just been in the last like nine months that I've started to realize, you know, I'm doing that to honor these people, to remember them, to not forget them. And the reality of the matter is, you know, I can still do that in a way that doesn't hold me back. I can take the their memory off of my back and add it to the flame on the torch that I'm holding out in front of me and help light my path even greater in front of me to make it see where I can go, make it see the impact that I can create. And I'm doing that because they're helping me light the way forward. And that to me has been, I mean, I know it sounds so simple, but it's it's transformative in my mental state about taking the weight of their loss off of my shoulders and putting it on the torch out in front of me has has really helped me learn how to process with with loss so much better than you know, I was doing even a year ago today.

SPEAKER_03 40:10

Yeah, well, thank you for sharing that. I will just share that I needed to process a lot of trauma and grief just for myself because my life basically, you know, caved in on itself and I had to retire. I found myself in a really difficult marital situation, or now amicably divorced, but it was clear that my illness, you know, had uh jeopardized uh the the marriage. Illness is plural, frankly, and the length of time that I was spending completely out of it deciding whether I was gonna live or die, basically. I had to do a lot of grieving, a lot of trauma processing for myself before I could imagine going to just to join a support group again, let alone become an advocate. So, but it sounds like you've been doing that work too with the therapist and being very honest with yourself about the emotions that you're carrying and identifying them and realizing that they sort of are what you make them, right? They can be that monkey on your back or the 900-pound gorilla on your back, or they can be the torch in front of you. Those are just metaphors, right? Oh, the great thing about metaphors and language is that we can use it to reshape how our emotions are impacting us. And yeah, so I love the way you've just turned that 900-pound gorilla that I've put on your back and transform that into the torch that's leading you forward as opposed to weighing you down. But yeah, unless we're honest about all the negative feelings, you know, like I've had this conversation with a few people where they get the message that, oh, well, you've survived cancer, therefore you must automatically now become an inspirational figure to other people. And it's like, well, not so fast. Like I you have to do a lot of work uh uh, you know, with that processing of trauma, grief, guilt, whatever, anger, lots of difficult emotions have to be processed first before you can, you know, feel safe sharing your story with other people and becoming that quote unquote inspirational Lance Armstrong style figure.

SPEAKER_00 42:32

We're all unique. So some might experience this at different points during their journey, right? And you might not realize you're experiencing that until you get into advocacy. And it's okay to take a step back from advocacy if you need to work on yourself. It's okay if you don't come back to advocacy if you if you realize that this is not healthy for you to be doing. And and I want to make that explicitly clear. This is not for everybody. And it's certainly not something that you need to feel just because you get into it, that you need to stay with it if you find it's not healthy for you. I want you to find it healthy for you. I want you to become an advocate, but we all need to look at ourselves and understand and listen to what we're going through and start learning. If cancer taught me anything, it was really to listen to my body, right? And my body is everything from, you know, the physical sense, the mental sense, the emotional sense, and all those things combined. And I got to listen to that. And I gotta be able to take care of that if I want to continue to live a healthy life. And if advocacy ever gets to the point where I'm not feeling that way, I will take a step back. Now, for me, what I've found so far is with a few exceptions, and I've used it my experience to help me understand what type of advocacy I want to do and what type of advocacy I don't want to do is to really understand that. This is something that really is healthy for me. It really inspires me. It it lifts me up. It it keeps me going. It helps me process the loss and the grief that I experience. Because now every time I'm doing one of these things, whether I'm calling on Congress, sitting on a research panel, I know that these people that I've become friends with that I've lost are there right beside me in spirit, you know? And they are telling me, Tim, go do this. Get this done. I want to see this change happen with you. And that's what keeps me and inspires me going.

SPEAKER_03 44:34

I feel like Man Up to Cancer has given me more than I've given it, even though I don't have cancer anymore. Like I'm not there to seek support for my own cancer journey any longer. I am there to support other men as they go through their stuff. But guess what? In listening to my comments here and there, they're supporting me too as I ride the aftershocks of the tsunami that hit me, my family, my body, my children's lives, et cetera, et cetera. So I think, you know, I think the

Compensation and Avoiding Burnout

SPEAKER_03 45:07

this, I think you've just kind of put your finger on the secret to sustainable advocacy is making sure that you're getting something from it that is meaningful. And I there's the question always of like, well, do you need to be paid by the entities that are, you know, employing you as an advocate? And I, you know, I think there's a gray area there that I have found where in some cases I do feel like I have a right to expect payment. In other cases, I'm like, no, I'm coming in to do this work pro bono because I too am getting something back from it. I'd love for you to comment on that, but I think I want to just pay you one final compliment on this book, which is, of course, I read it cover to cover because I wanted to know it and your story as fully as possible. But I'm going to keep it with me because I think it will be going forward a guide for challenges as I continue in my own advocacy journey, which I hope to do for the rest of my life. Because I think you have set out that, you know, the thing is to look out for when you're close to getting burned out, which is my primary concern is okay, I'm doing a lot, so am I going to get burned out? How do I recognize the signs and so on? So your book is not just like, oh, I'll read this book and then I'll be good to go, and then I'll forget the book because I'll have internalized everything. No, no, no. This is a book that will you will want and need to keep dipping back into as you continue your advocacy journey. So, first of all, thank you for writing it. And secondly, um, yeah, any thoughts on you know what I've shared regarding payment in monetary terms versus payment in like, you know, satisfaction?

SPEAKER_00 46:54

Well, first of all, I want to make it very clear there's very few people that make a living off of doing advocacy, you know. Yeah. Um flat out, you're it this is not a career choice unless you want to do it in a clinical setting, right? And the rules are completely different than what I wrote about. Um, but you know, it is something like we talked about, you have that lived life experience that nobody else can bring to the table. And when you're thinking about being on a research panel, these researchers that are doing the work are getting paid. They bring in statisticians that they hire to bring in to put their reports together. You know, they pay everybody else on their team that's helping them get this trial done. Why are they asking you to do it for nothing? They shouldn't be. You should be compensated just like everybody else is, because you're bringing an experience in and an expertise in that nobody else has. That's why they bring in all these other parties, because they have expertise in these areas.

SPEAKER_01 48:03

One side note, Tim, to play devil's advocate. Federal grant budgets are shrinking while they require us to add more components to our research plan. Because, for example, a patient advocate is now more and more required. Something has to give.

SPEAKER_00 48:19

And so it's about like understanding that your knowledge has value. And but I do think you bring up an important point. And it's not like I'm not going to sit here and say, Oh, I'm not doing it unless if I, you know, my time's worth $500 an hour. I'm not doing it unless if I get $500 an hour. Um, you know, sometimes it's $75 an hour, sometimes it's $50 an hour, sometimes it's $200 an hour. You know, I mean, there's all different cases, but you bring up a really good point, Brad, about like another component because I think compensation, everybody immediately goes to money. And compensation can also be what is this doing for you emotionally, physically, mentally? And if it's helping you in those areas, can you put a cost on that? Probably not, but it is something that you value, and that is compensation as well. And so you really need to be your own judge of what you're being asked to do and what kind of value you're getting in exchange for that.

SPEAKER_03 49:28

That is that is the wisdom that that I think only you can really can share, that you have shared in your book and in this conversation. Josie, uh, I I turned it back over to you.

Every Advocacy Counts

SPEAKER_02 49:39

Thank you. I have one more question, and then I think we're at the end of the hour, so I'm giving each of you the opportunity to make your final statement. But my question to you is different than it was 10 minutes ago. When people are listening here, I guess they may feel some guilt that they are not creating meaning, that they're not having a purpose, that they're not paying it forward in their borrowed time. And I think you touched on that a little bit, that not everybody is able or wanting to be a very visible frontline advocate. Being an advocate in the cancer field, which is what we're talking about here, might be too confronting. We're all part of a community in society, unless you live under a rock. You're all touching somebody else, and just being part of that community and taking care of that village is already some degree of advocacy. It just means you're helping your neighbor.

SPEAKER_00 50:48

Yeah.

SPEAKER_02 50:49

Whichever way that is, kids are related or not.

SPEAKER_00 50:53

Well, I think Josie, it's so important because I listen to so many people tell me that they just they're not emotionally at a place, they don't have the personality to be an advocate. And I know them a little bit. You know, I've had a relationship with them, and I've observed their actions and I see what they do. And it might not be the same thing that I'm doing. They might not be as active on social media, they might not be getting on podcast. But you know what I'm seeing them do? I'm seeing them reach out to that one other patient and talking with them on a daily basis or weekly basis. I'm seeing them give somebody a ride to their treatment. I'm seeing them do these little actions that they're not giving themselves credit for. And when I talk to them, I can see that because I'm on the outside looking at the whole picture, what they're doing, and they're inside the jar, right? So I'm able to read their label and I tell them, you don't have to do what I'm doing. You are making an impact by doing these small little things that you're doing to impact, you know, this patient in this way and this patient in this way. And it's those things are so important because nobody wants to be left alone, right? Nobody wants to feel alone. And so, whenever we can make somebody feel like they belong to something greater, that they have somebody in their life that cares about them, it gives them greater meaning in their life. It gives them greater purpose in their life. And so, even though you're not giving yourself credit for you are doing it.

SPEAKER_02 52:27

I think Brett and Tim, is there anything you would each like to say before we

Hope and Closing Thoughts

SPEAKER_02 52:33

close out today?

SPEAKER_03 52:34

Well, I wanted to go back to one of the questions that you that you offered up, Josie, and that had to do with hope. You know, Tim, you're yeah, you're I think you're a strong, powerful, positive voice in what in a lot of people's minds is a somewhat dark time. And the the the health and medical situation in this country, and I'm not going to get into the politics of it, but especially within the context of new research and respect for expertise and and basic medical science, which is to some extent being questioned and undermined. What is giving you hope about where we're at today in your life, in the broader cancer advocacy community, and share some positive thoughts if you can?

SPEAKER_00 53:27

Well, I think it's really easy to get distracted by the headlines that we see, right? But what I see, and I choose to see it, is you know, the last time I was up in DC in March, we got a much warmer reception when we had our Hill visits than we ever have in the four years I was doing it before that. We had more senators and more representatives sign on to the ask that we did for the appropriations this year than we have in any other year in the past. And so for me, those are hopeful signs. Like we've actually moved the needle a little bit, right? Like we're making those progresses. But the other thing that I'm starting to understand is, you know, the research dollars at the national level get a lot of attention. But the research dollars that are falling in from other places don't ever get talked about. And that research is still happening. And we are seeing some good progress out of that research that's coming out. Now, is it enough? No, you know, but are we seeing it some positive things happening? Yes. And that is what gives me hope is that there are opportunities out there. There are promising signs out there. There are, you know, if you look underneath the surface, underneath the headline, there are some really positive things happening. And that is what really gives me hope. But more than anything, it's the people, it's the patients, it's the caregivers, it's the survivors out there that are stepping up and understanding the power of their voice. That gives me more hope than anything.

SPEAKER_03 55:07

Well, thank you. That's a wonderful, uh, wonderful answer. And yeah, as someone who's been to DC so often, you would know far better than I, you know, what the lay of the land is there. So anyway, thank you so much, Tim. Josie, final thoughts?

SPEAKER_02 55:23

Thank you both, Tim and Brett, for talking with us today. It was really inspiring. You have very special stance in life, Tim. It's an example for many people. And you're not Pollyanna. I I s I find you very realistic in how you stand with your feet on the ground, but you choose to see the world in a certain way. Thank you, Tim.

SPEAKER_00 55:53

Thank you.