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126. Self-Advocacy in My Prostate Cancer Treatment- with Murray Keith Wadsworth
76 Plays3 years ago
Murray Keith Wadsworth, the author of Prostate Cancer: Sheep of Wolf?, is passionate about spreading the dark truth about prostate cancer. His sudden diagnosis and shocking process to treatment continues to drive him to untangle and share the systemic misinformation around the disease. By dividing his book into timelines, research and his RV road trips, Wadsworth empowers readers to practice patient self-advocacy dig deeper into their health care decisions.
https://www.sheepwolfcancer.com
https://www.facebook.com/prostatecancersheeporwolf
Contact Kendra Rinaldi for coaching or to be a guest on the podcast:
https://www.griefgratitudeandthegrayinbetween.com
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Transcript
Impact of Cancer on Relationships
00:00:01
Speaker
They had helped me out quite a lot when I was in my six weeks of recovery from the surgery and that they brought me the meals and they did those kinds of things. With cancer, I experienced this and others tell me this, you lose some friends and you can even lose family. The grief that others go through can be quite stunning. They get very sad for you. And then I think they're also worried about themselves.
Introduction to the Podcast
00:00:30
Speaker
Hello and welcome to Grief, Gratitude, and the Gray in Between podcast. This podcast is about exploring the grief that occurs at different times in our lives in which we have had major changes and transitions that literally shake us to the core and make us experience grief.
00:00:54
Speaker
I created this podcast for people to feel a little less hopeless and alone in their own grief process as they hear the stories of others who have had similar journeys. I'm Kendra Rinaldi, your host.
Meeting Murray Keith Wadsworth
00:01:08
Speaker
Now, let's dive right in to today's episode. Today on the podcast, we have Murray Keith Wadsworth. He is the author of Prostate Cancer, Sheep or Wolf.
00:01:23
Speaker
And he is also a father, a grandfather, and an RV traveler. I had to ask him where in the world he is right now. He could be like, where in the world is Murray Keith Wadsworth? We could create a new little thing. Welcome, Keith. And we'll be referring you as Keith. That's the name you grew up knowing. Welcome.
Journey to Support Family
00:01:48
Speaker
Thank you, Kendra. Pleasure to be here.
00:01:49
Speaker
I am happy you are. So tell us now, let's start with that. Where in the world is Murray Keith Wadsworth at this moment? Currently in Houston, Texas, near my grandchildren and my daughter, and I have my son with me. I am currently helping him.
00:02:09
Speaker
He is dealing with a lot of problems in life, a lot of grief, and that of course brings a lot of grief into my life right now, unexpectedly. So we've been together since late May.
00:02:21
Speaker
since late May that you've been there. You basically stayed in Texas for the heat wave, instead of going to some of these other places that you've been in on your road trip journey. I was actually back in May, I was up in the beautiful, very high mountains up in Utah. And I got a phone call that my son needed help.
00:02:46
Speaker
So he flew up to Salt Lake City and we spent a couple weeks camping and then made a decision to come back near my daughter to be near her family. And so yes, I'm in Texas in the horrible heat and the horrible humidity.
Embracing Change and Wanderlust
00:02:59
Speaker
But you grew up here pretty much most of your life, right? You moved here, was it from California? Is that correct? I grew up in California, Southern California. So I'm an old school, so cowboy. So I grew up there in the sixties and seventies and then came to Texas 35 years ago.
00:03:18
Speaker
35 years ago and then stayed but have been kind of traveling. So tell us about that because in your book, you do mention a lot of this back and forth
Interpreting Cancer Diagnosis
00:03:28
Speaker
and we'll go into more of the book, but you lived in the UK as well for periods of time. So what made you want to go back and forth and live in the UK part here before you did your whole RV trip?
00:03:47
Speaker
I now know that I really enjoy traveling. And I've always traveled, but I didn't realize how much I really like it until actually the diagnosis, which was seven years ago. And I also now fully understand about myself that I love change. And I like going where I don't really know where I'm going.
00:04:14
Speaker
I'm a wanderer. I don't like to use that type of labeling about myself, but it is descriptive. And a few years ago, I read an interesting book. I don't recall the title of it offhand right now. I was prepared for this thought.
Treatment Journey and Life Changes
00:04:28
Speaker
And it was discussing
00:04:31
Speaker
some of the issues people have today and children have today. And the question was raised who was Columbus and who was Lewis and Clark and all of the other explorers were these homeless people were these attention deficit people because they were always on the move. They didn't like to stay settled. And it was an interesting concept to think through. And that's why I like to move. So I was over in Europe living there having a wonderful time enjoying traveling there.
00:04:59
Speaker
And that's when the diagnosis came in and I had a small business over there doing well and packed it up and said, I'm done. And came back home for the primary treatments and jumped in the RV.
00:05:14
Speaker
Yeah, that was like a three-year journey was those initial in the book is it's kind of from 2015 to 2018 Right here in primarily correct, right correct in 2016 is when I had my primary treatment and that's when I went off in the RV and I had shut England my business in England with that point we shut down I closed the doors and
Understanding Prostate Cancer
00:05:39
Speaker
Now, you still ended up going back to England a few of the times during this process. So, let's go into, first off, I mean, I'm gonna first ask this, the title of the name. That's because this is of the name, the title of the book. So, prostate, cancer, sheep or wolf. So, let's explain to the listeners how it is that you came about
00:06:08
Speaker
with prostate cancer being a sheep or a wolf, that analogy that you use? Of course. So, you know, cancer diagnosis is a tough thing to hear. Immediately you're shocked and you're afraid of dying because we all think, I think that cancer has that outcome for most people.
00:06:33
Speaker
Prostate cancer is a very challenging disease, and that the commonplace information is most men with it don't die from it. So you go, okay, well, what does that mean? Then we hear this mostly in old man's disease, but here I'm in my 50s when I'm diagnosed, and I don't think of that as being old. And then as you delve into this disease, it can take 10 or 15 years before it takes someone's life.
00:07:02
Speaker
And they know they have it and they're doing various treatments, but it can take a very long time. And that's a good thing, of course. So the doctors will always talk in all of their very detailed technical terms. And a lot of other patients like to talk in their technical terms and label the tumors and give them letters and numbers. And I like to be simple. So I just said, is it a sheep or a wolf?
00:07:29
Speaker
Sheep can be mean, and I write in the book, I have mean sheep. My sheep got out. But if it's a wolf cancer, if it's a really aggressive cancer, no matter what brand or flavor of cancer it is, that person faces a real serious challenge. If it's a lesser aggressive cancer, particularly in the case of prostate cancer, you start looking at time.
00:07:50
Speaker
I might have 10, 15 years. I might very well outlive this disease. I might have 20 years. So I codified it as sheep or wolf. And then also in the book I talk about, is it in the barn or out of the barn? And this actually occurred to me when I was up in the Grand Teton's camping and I was looking at a barn. And the idea became if it's a wolf in the barn, the barn being the prostate gland,
00:08:17
Speaker
It's like breast cancer in the breast. If it stays there, it's actually not a threat to your life. It's when it spreads. But if it's a woof, if it's super aggressive, the patient's on an entirely different path.
Health Advocacy and Emotional Impact
00:08:30
Speaker
Time is crucial, and we have to get everything quite right. If it's a less aggressive cancer, that's where the sheep is, then you've got time. And so mine was determined to be a sheep. But when I had my first and second treatment, we didn't know that the sheep were already out of the barn.
00:08:48
Speaker
They were out in the pasture, as I call it. The pelvic region is where it goes in the man first and the lymph nodes, but mine was already out. We did not know that. So that's mine got to be called mean sheep because they were on the move.
00:09:02
Speaker
Thank you so much. You bet. Thank you for that explanation. And yeah, those those visuals do help. Yeah, there were a lot of even tests. Of course, I'm as a woman, I've never been tested for prostate cancer. But I know, you know, my dad has, my husband has yet to, but the all the different treatments that you mentioned and the ways that you advocated for yourself in that process, especially when you found out your first diagnosis,
00:09:31
Speaker
You had a result, then you still went ahead and did more research, had a second opinion, and then even went overseas then to the UK to get other opinions. So let's talk about that, about being an advocate for your own health and how
00:09:50
Speaker
Did that help you in navigating this grief journey? Because the moment you get a diagnosis, there's an aspect of grief right there, right? Because you already have to perceive what the future is going to look like, and it may look differently. So would you please take us on that journey in the conversation? Certainly. So in what is chapter two of the book, How Screening Failed Me?
00:10:20
Speaker
My screening failed me. We missed the cancer for what could have maybe been as long as 10 years, the slow aspect of this disease. And if I could digress just for a second from your questions and stay focused on screening, I think, and part of what I'm trying to do is convey to men that this disease is not being managed correctly in this country. And so you mentioned your dad's been checked.
00:10:49
Speaker
and that your husband has not. This is not by any means an old man's disease. There's more and more data now telling us that, we talked earlier, it's 15 to 20 years. So if a man dies in his 70s from this disease, so that's an old man and it's a grandpa and it's okay, it's how I sort of feel the message is. It gets maybe started
Informed Decision-Making in Treatment
00:11:11
Speaker
10 or 15 or even 20 years earlier. So you back that time up and the 40s start to become problematic.
00:11:18
Speaker
But these are not the guidelines. There is new thinking coming out. It's just beginning to get into the public domain because this is contrary to the U.S. guidelines that we should be screening in our 40s. And so for your listeners, right now the main group talking about this is the University of California, San Francisco, one of the major cancer centers, and a Dr. Matt Cooperberg.
00:11:47
Speaker
So I just learned of him just a few weeks ago. So he's going politely and he has to watch his step, I feel in the area of urology, but he's going against the standard grade. So in our, we get a blood test for this disease and the standard guideline is zero to four for men of all ages, which we now know is wrong. And so for men in their forties, they should be testing.
00:12:11
Speaker
and absolutely in your 50s, and they're looking for a value of being less than one. That's known as a PSA prostate specific antigen, but the standard scale is zero to four, but now in our 40s and our 50s, we want to be less than one or less than 1.5. When a man gets older, it gets all muddy because the prostate starts to change, it's aging, it's getting larger. So I was screening in my 40s. I was doing the right thing. My numbers were always above one.
00:12:41
Speaker
but the standard guideline was zero to four. So I was above one, which we are now hearing it should be an alarm, but I was below four.
Coping Mechanisms and Projects
00:12:51
Speaker
So we were okay with it. And so another routine screening comes up and I'm 57 and I'm in England working and having a great time. And I decided just to have it done over there. So, a cellularologist over there and they do a different physical exam and he finds the tumor.
00:13:11
Speaker
So this is immediate shock. And the first thing is, how do we miss this? Because I had been told everything was fine.
00:13:20
Speaker
And we had, Dr. and I here in Texas, we had been discussing doing another biopsy, but there's a lot of negative information about the biopsies. And they talk about false biopsies. And I think, why is it false? If you have a biopsy done and it's negative, isn't that good news that I write about that in the book? Because that into itself, we talk about grief. Okay. We're going to do a biopsy at you. So you immediately go to grief. It's a terrible situation. And then they tell you, well, that was unnecessary.
00:13:46
Speaker
And they go, how's that helping me? As I thought, why don't I celebrate that it's a negative? I also deal with melanoma cancer. We're pulling skin off and doing biopsies, and I'm happy with that. Scrape it off, and I wait for the negative result. So I came back to the States, came back to my primary doctor in Texas, and we did an MRI, which is still a fairly new technique for this disease. Shouldn't be, but the US is slow to catch up. I had learned about this in England. And then I learned they did them here just not very often.
00:14:17
Speaker
And the paperwork made it clear that it was probably cancer. The MRI is not diagnostic. So we did do the biopsy. And I write about this. The biopsy came back in written form in large capital red letters, carcinoma. And I sunk. I just absolutely sunk. That was terrible. And I talked to the doctor about it. I said, why on earth do you present it this way? It's shocking. And so the grief was just horrible.
00:14:47
Speaker
And the doctor wanted to do surgery the next week. And I just said, no. I had already read a lot of the confusing information on this, which is heads to the subtitle, navigating systemic misinformation. And there's a Gleason score. It's a way they grade the biopsies. And mine was the lowest score. And a lot of people say, well, maybe it's not cancer. So this, again, sort of ties back to sheep or wood. So I'm confused. Why am I the lowest score of what you want to do surgery next week?
00:15:17
Speaker
And so I just decided to return to England. I knew that they were advanced is going to be my word over the U.S. because when I was diagnosed there, they told me they have methods for doing diagnostics and treatments that are not yet approved over here. So I went back. There were different opinions on the pathology from the biopsy and different opinions of the MRI results. And so that started to lead to a more aggressive cancer.
00:15:46
Speaker
And so all of that went on for months was the breeding process. It was just how much time do I have? And again, back to sort of sheep and wolf. The more we diagnosed, the test that we did over there that you can now get in the US, so that's the very good news. So I was introduced to something called genomic testing over there that gives you a risk factor. I was denied that in the US, told it would never be approved, and of course now it's approved and all things can get it.
00:16:15
Speaker
The wonderful thing that I'm proud of with the book is I was writing about things that men couldn't get three years ago. Now they can get it. So we had a better diagnosis. But the question was, was it out of the prostate going? Had it spread? And that was not clear. So it was not going to be until after the first treatment I had with the surgery that we would know whether it had spread or not.
Communicating Diagnosis to Family
00:16:42
Speaker
Thank you so much for sharing that. Now, how did you, you mentioned the grief in that moment of seeing in red, bold letters, carcinoma. Now, how did you navigate
00:16:57
Speaker
your grief journey aside from basically taking the bull from the horns and really feeling like, okay, let me see what is in my control. And your control was the aspect of researching and researching and trying to find solutions. What other things did you do to navigate those emotions of grief with this diagnosis?
00:17:21
Speaker
One of the things that I did is I kept it to myself for quite a while, which may seem contrary to what we should do. I share in the book that my daughter and son came over for Christmas holiday and we did some wonderful traveling. I didn't tell them what was happening. And I made that decision because I did not have enough information. So I thought, rather than just give this picture of bad news,
00:17:47
Speaker
I want to really have a thorough understanding of what I face. And that helped me because it allowed me to realize we don't have the answers yet to questions that we're asking.
Support Networks during Recovery
00:18:00
Speaker
So we don't know how serious this is. And I also thought, having a bit of difficulty seeing how serious this is, it's probably less serious. And so it relieved some of the pressure.
00:18:16
Speaker
It's like, okay, I have cancer that into itself is nothing unique in the world. Lots of us have cancers, but, and I'm not getting any indication that I have three months to live or six months to live. So I relieved pressure by saying we're having a hard time understanding how severe this is. So that means it's not as severe as it could be. And until I don't understand it better, I'm not going to tell really anybody. And I was good with that. That worked for me. I also stayed very busy.
00:18:46
Speaker
So for a while early on, I continued with the business in England, and then I made the decision to shut it down. So that kept me busy. And then I was going back and forth doing evaluations. And so that took its own time. So that was another way I handled it, just really staying busy idle time I realized is not good.
00:19:05
Speaker
And I also mentioned when I went into the book and my second treatment, which was radiation therapy. So that goes on for eight weeks. And I rebuilt a boat in that eight week period. And I realized, have a project. And every single day I worked on the boat, there were a few days I didn't feel very good because of the radiation.
Evolving Friendships and Gratitude
00:19:24
Speaker
But I knew I was facing grief.
00:19:27
Speaker
And I thought, just take it head on, get to your project. And some days I couldn't work really well. I couldn't work really hard. I'd be tired, but I still did it. And that has always worked well for me. And then I tie that in to when I had my first treatment, kind of going back and forth, but the grief concept comes up all the time is when I decided to go out in the RV, I had to go shop for an RV. So that kept me busy.
00:19:55
Speaker
So I did a lot of online shopping first. We all know what that is like and takes. I took weeks, really, not months, but weeks and weeks. And after my first treatment, my first surgery, you're in your standard six weeks of recovery. I just spent most of the time at the computer shopping for RVs. So that also helped. And it gave me something positive to look forward to. I knew recovery. I didn't know if we had gotten all the cancer or not. That's a long-term dilemma.
00:20:23
Speaker
But I knew I was recovering and I knew I was going to go out camping in the mountains. That is a great, great tip to have something else planned that has a future date on it. You know, something to look forward to with something that helped your process. Let me ask you, how did Shannon and Matthew take your kids, take it after you told them that you had it?
00:20:50
Speaker
and how long you had known that information. I am curious, they were adults already, but how did they take that information of finding out that, oh my goodness, dad has been dealing with this and we didn't know? Right. Very good question. And so I told my daughter first and I told her
00:21:18
Speaker
It's probably about eight or nine months after the original diagnosis. Seems like a long time. I had returned to the States and I was visiting with her and her husband here in Houston and we were out on a jog. And I wasn't jogging really well. And I wasn't jogging very well really because of the stress. And so my daughter, who's quite, quite smart and knows her dad well, she says, dad, why are you here?
00:21:49
Speaker
And I said, well, I was over at MD Anderson Cancer Center. And so she instantly knew, you know, you don't go there for anything else. And then she said, how long did you know?
Dispelling Myths and Advocacy
00:22:03
Speaker
And I said, well, I knew when we came over to Europe at Christmas, and that began that discussion.
00:22:09
Speaker
Why did I wait so long? So I explained it to her. And she's in the medical field herself. She's a doctor. So we had an interesting chitchat. And my son-in-law is an engineer, aeronautical engineer. So he asked me questions from the engineering standpoint. And we had our discussion at a very technical level, which sort of pushed the emotions aside for a while. And then you can ask yourself, am I denying the emotions? But we were handling the emotions better.
00:22:38
Speaker
My son, so it was a couple months later, he was living in Colorado and he wanted to come home. His life is challenging and I explained a bit of that in the book. And I said, okay. I said timing is really good. So I went and I got him and we drove back from Colorado to Texas. I said, well, I knew I need you help. I said, I'm going to get ready for a big surgery and I need somebody to take me and
00:23:07
Speaker
And so that's how I introduced it to him. I did share in the book and I thought I was really unique when we were setting up for the first surgery, which has a lot of grief around it because it can leave a man dysfunctional in a number of ways. My surgeon that I chose was quite young. Many people would say it was a bad idea, but I did a lot of research. I went to a lot of major cancer centers and I chose a younger, lesser experienced surgeon, shall we say.
00:23:37
Speaker
Is that the one that you introduced to Matthew and he shook his head, something? Okay, yeah, okay. Yeah, and so for your listeners, my son was born without arms and the doctor didn't hesitate to shake his little, he has little fingers that dangle off his shoulders and the doctor didn't hesitate to shake him. And anytime anyone does that, I think very well of that person.
00:23:55
Speaker
So that made me feel really good about my choice at that moment. And then when he left, my son knew I was nervous, of course. And my son said, dad, you'll be fine. He grew up on video games because this was robotic surgery.
Freedom through RV Travel
00:24:11
Speaker
So that's how my son and I came into it together.
00:24:14
Speaker
His reply to you, that is what was unique that I thought was like, this is robotic. And he grew up in video games. I'll be like, he could do it with his eyes closed. Maybe that's the career my 15-year-old son should be into robotic surgery because he's really good at video games. OK, well, thank you for sharing that. Now, you mentioned then your kids, how they took the trips back and forth.
00:24:45
Speaker
having really an advocacy for finding out information about the different options, having an outlook then of the future, planning things to do, the RV purchasing and all that. Now let's talk about friendships and the support system around that in your journey.
00:25:06
Speaker
Because there are few friends that the people that you followed and started your RV with, your friend in England, there's a few friends that come into play in this story. There are, and the gratitude is immense. I don't know how people can do these types of challenges without the gratitude and without the friendships.
00:25:34
Speaker
Again, I mentioned earlier, this is a pretty tough disease in that it has complications at the front end of treatment. And then the question is, did we get it all? I share a lot about John and Patty in the book. I have known them since my kids were in kindergarten, first grade. Patty was my daughter's first and second grade teacher. We refereed games together in the town we grew up in outside of Austin, Texas, where my kids grew up in.
00:25:59
Speaker
So they had been longtime RVers. And so they helped me learn a lot and they trained me. And we embarked together on my first year out in the RV. And so when you leave Texas, Central Texas, South Central Texas, it takes more than a day just to get west to leave this big state, as you know. And it was following them on the first day. We're out.
00:26:25
Speaker
panhandle area and that's when I decided in the car I'm going to write a book. And so I spent the better part of the season with John and Patty. They had helped me out quite a lot when
Writing as a Journey and Insight Sharing
00:26:37
Speaker
I was in my six weeks of recovery from the surgery and that they brought me the meals and they did those kinds of things.
00:26:43
Speaker
you know, with with cancer, I experienced this and others tell me this, you lose some friends, and you can even lose family. The grief that others go through can be quite stunning. They get very sad for you. And then I think they're also worried about themselves. So some of my friends sort of bailed on me. And one of them, and he mentioned to me says, I'm not in the book, and said, you're right.
00:27:10
Speaker
And I said, I'll tell you why. So he called me up one day and he said, so I want to see how you're doing. You're going to have surgery pretty soon, aren't you? And I said, Jeffrey, I had my catheter out three weeks ago.
00:27:26
Speaker
So he wasn't aware. He had sort of distanced himself. And that is also difficult to deal with. You have to understand they're doing it for their reasons. So John and Patty were key, and I camp with them every year, except for this year, the seventh year is the first year we didn't camp together because they had an unfortunate accident in their life.
00:27:48
Speaker
I also talk about Carol. You had asked about that. So I met Carol in on a ski trip in Europe, actually. I was on what was the they call it the over 50s. It's the silver skiers. And most of the skiers are by themselves are not out with their spouses. The men that are out with their wives at home, they're out because they still like to ski and the wife doesn't.
00:28:18
Speaker
And I was there because I was on my own. Kara was on the trip. And so she came, sought me out one night. We were in the hotel. So we're staying in small hotels on the sides of the mountains. And I had a bunch of books. And she came over and she just had a look. Because everybody else was partying. And I was reading about radiation therapies. And she's a doctor. She's a breast cancer specialist.
00:28:45
Speaker
asked me what I was just, you doctor? And I said, no, I'm a patient. And so that was our introduction to what became a superb friendship and a very key friendship throughout all of this. She wrote the introduction to the book. She gave me guidance in how to do self research.
00:29:08
Speaker
and how to determine what was good research to read and to take on board. So she taught me the indicators when you're reading anything, any kind of medical paper, look to see if it's peer reviewed, and then you go see who the peers are.
00:29:26
Speaker
So always, particularly in the US, we see cancers written about a lot in magazines and newspapers. And so that's a writer interpreting what they've read. So she taught me, skip the article, look for the papers that are citing, and go straight to the papers and see if it's peer reviewed. And then again, see who it appears are.
00:29:48
Speaker
And then you begin to formulate an opinion about whether you're going to trust this or not and take this on board. And then you look for the disclaimers. Deep in their papers, they have to disclaim whether they've gotten any financial benefit or what their connections may be. That's a very good indicator of what you're getting. And then she taught me how to look for sort of counter opinions to the opinion you're adopting. Look for the counters to see how strong the counters are if there are any. So her role was tremendous in that.
00:30:18
Speaker
So Carol would be talking to me as both a doctor and a very personal friend and didn't always think I was handling this very well or that I was thinking the wrong things or looking at the Ron Angles. And we worked through that and that was fine. And why I mentioned that is very sadly, earlier this year, Carol was diagnosed with a very aggressive breast cancer.
00:30:45
Speaker
And so that flips the grief in our friendship, in our relationship. And she recently shared that she now understands because she's from decades she'd been a doctor and became a breast cancer specialist. And now she faces the diagnosis herself and faces the things the doctors have missed or the doctors are conflicting with each other on. So that was
00:31:12
Speaker
It's interesting to see someone who's been guiding you now face the grief. And she's largely withdrawn for quite a while now. I haven't been over to see her. She's in England. We spent some time together in France, but when COVID hit and the very other issues, she decided to go back to England. I've been very hesitant to travel, not because I'm concerned with COVID, that's its own separate discussion, but the travel restrictions.
00:31:40
Speaker
So she played a huge role in helping me become my own advocate. Also very carefully guided me not to be my own doctor, of course. And I've been asked that several times by doctors. Do you think you're a doctor? And I'm like, well, I think you're just offended that I've done my homework. I bring you what I find and I ask you what you think. I don't tell you what we're going to do.
00:32:02
Speaker
So that's a big role that she played for me. My daughter's been quite strong throughout all of this and very, very helpful, and knows that I'm viewing life a little bit differently. My outlook is very favorable right now, long-term favorable. But one of the ways I handled some of this was just to go do what I wanted to, and I love the outdoors.
00:32:24
Speaker
And people will say, well, you know, so I sort of quit working in my late fifties and people will make comments about, you know, financials, that's always pops up. And my answer is, if I live into my nineties, I'll probably be living with my daughter on her, living her, needing her money. But right now that's still a long ways out. I'm just 65. So, but I brought forward some of the expenditures and said, I'm going to, I'm going to enjoy life a little bit more right now.
00:32:52
Speaker
Thank you so much. And you caught me off guard with Carol's, like it was kind of, because of course that's not, this book was written before that. And so that part is not mentioned there. So with Carol's diagnosis and the irony just of her work. And then now her diagnosis just kind of caught me off guard myself and the part of how, of course, with it in her own way now of her being the
00:33:21
Speaker
patient and dealing with the grief, how it's so unique, the way that it's so unique, how each individual may deal with a situation you might withdraw from others or others may withdraw from you if you're the one, like in your case, you notice friends withdrawing probably from you because they didn't know what to do. And because they're faced with their own mortality as well,
00:33:50
Speaker
It's interesting then the approach as well when somebody is diagnosed, some people may seek for support and others may seek to withdraw. So thank you for sharing that and sending her and you of course, a lot of healing vibes, sending them your way and her way over in the UK. Now let's go into the RV and lessons and
00:34:18
Speaker
how life has unfolded in front of you as you navigate this road trip. And you did the same, you kind of mentioned that you took even the RV route of even searching for your RV very methodically as well, just like you did with your researcher for your treatments. You were like, you know, I need to find out exactly which one to buy. And I'm wondering if that's your approach as well when you're traveling. So take us on that journey of the RV living.
00:34:48
Speaker
Certainly. So one thing, prostate cancer, as I've said a couple of times, is quite challenging. Once you delve into it, you realize that it also has a lot of treatment options, including not treating.
00:35:03
Speaker
I delved into a parallel of liver cancer just out of curiosity. And there's not a lot of discussion in the medical field. This is the diagnosis. These are our choices. There aren't many. Here's what we do. So when you come to look at an RV, and that's a very popular sport these days, there's a lot of RVs.
00:35:22
Speaker
unlimited number of RVs and you have to actually begin making certain decisions and you have to do that with prostate cancer as well. Do I want to do surgery or do I want to do one of the various forms of radiations and you can do the pluses and minuses with RVs? Do you want a motorhome? Do you want a smaller big motorhome, small motorhome? Do you want a bumper pull? Do you want what's called a fifth wheel which is what I pull where it sits up in the back of the pickup truck? So you work through that whole process and
00:35:52
Speaker
I created a spreadsheet.
00:35:55
Speaker
for RVs and pluses and minuses. And then I also did that with the cancer treatments because I've had multiple cancer treatments now. And I found a process where you choose either yes or no on an option. And then that eliminates a lot of the other considerations. So you come to treating cancer. If you cannot have surgery, let's say, for example, you're allergic to anesthesia. You don't have to think about surgery anymore. It's just off the table.
00:36:24
Speaker
So I made a decision in the RVs that I did not want to have two street legal vehicles, meaning the motorhome that pulls another vehicle. So I was by myself. So I said, I don't want to do that. So that eliminated my need to look at all motorhomes. And that was easy.
00:36:42
Speaker
And so said, okay, now it's a pickup truck and it's either a bumper pole as it's called, a typical trailer or a fifth wheel. So I said, I want a fifth wheel because it offers a couple of things, a bumper pole does not. So now I just had fifth wheels to look at. Uh, and I use that technique several times as I had to make treatment decisions. If you, you, you say, if I make this choice, then it makes the other choices easier because I can't, because they're no longer an option. Uh, so.
00:37:11
Speaker
I settled on an RV, a fifth wheel, pickup truck, and off I went for a few years. And it proved to be a good decision for me, given all the options. And when you sit around campfires with other RVers, everybody talks about why they chose what they chose. And some of them will tell you why what they chose is better. And you go, OK, I get what you're doing. And I see why that's better for you. But here's why what I'm doing is better for me. And they may or may not agree or see it that way. So it's a lot of fun.
00:37:40
Speaker
And it's quite an experience to be pulling your house down the road and bouncing it and breaking it in. Then there's lots of options. And I use that a little bit in the book. How do you want to do things? Do you want to be solar? Are you going to only be in RV parks? Are you going to be out in the dirt? And similar with the prostate cancer journey, lots of choices, lots of diagnostic methods.
00:38:03
Speaker
Later on in the book I share, I end up going back to Europe for imaging that could only be found in the Netherlands of all places at the time. And sometimes you'll make quite a journey to go get a part for your RV or you want a unique accessory. And I found that that helped me again handle the grief. We knew after my surgery that we did not get all the cancer. We knew within weeks after the surgery.
00:38:29
Speaker
And now I'm embarking out on the RV trying to decide what to do next. So that helped me again handle it. So when I bought my RV, I'll go make my decision, but I could sell it and buy another one. I'm not committed. I have flexibility here. I have options that, of course, I had options after the surgery. So I like options. Of course, I some people say I like too many options. But again, that's how I handled it. And I paralleled them.
00:38:57
Speaker
And thanks for those contrasts. I love how you compare the way that you compare your journey of researching for better treatments for prostate cancer with the RV, just like you compare the types of cancer with sheep and wolf. I'm such a visual person, so those things really helped me.
00:39:18
Speaker
So thank you. And it does kind of the quote unquote dumb it down, dumb it down for like to really understand it and grasp it. So thank you for that. You're welcome. And now we know you can create your own blog about which RVs are better for what kind of styles too. I could, it's its own interesting subject and what's a very popular activity now.
00:39:44
Speaker
Yeah, so that's wonderful. Now, I want to talk about the last part of the, well, one of the appendix, because in the appendix, I think it's one of those that someone could go straight to there and it's really like a
00:40:00
Speaker
Uh, let me say like a manual of what to do. The appendix A would be the case. So let the, I'm going to read just, if it's okay with you, can I just read a couple of things? So I'm just going to read just a couple of things I highlighted here. So this one is called what I would tell my brother. So, so, so this is something that you tell someone else going through.
00:40:22
Speaker
this and wanting to do their research. Dispel the misinformation that prostate cancer is an old man's disease, that screening has unmanageable risks, and that men should fear untreatment and unwarranted side effects. Let's talk about this part, that men should fear untreatment and unwarranted side effects. So even though you chose surgery in your journey,
00:40:48
Speaker
Can you talk about this part if someone would have chosen a different path of procedure in your whole journey? You chose that path. Let's go over that. Sure. So when you start researching, and if you're looking at books, if you want to read books, one of the most promoted books on prostate cancer is titled Invasion of the Prostate Statures.
00:41:19
Speaker
And this is a very negative book written anti-surgery. And the problem with surgery is one at surgery and all surgeries come with their risk. The man can have what we call horrible side effects. One of them might be he will be incontinent afterwards. So now he's going to wear diapers the rest of his life. Or he might lose full sexual function.
00:41:44
Speaker
And when I talk with men and I think about it, I go, you're in your 50s and your 60s. You know, we don't have to be so focused on that aspect of our life. We could find other things to be grateful for. So there's a tremendous movement anti-surgery.
00:42:00
Speaker
Well, when I was in England, before I chose surgery, I went over there for methods, non-surgical methods that were not yet available in the U.S. Haifu, it's a high-intensity focused ultrasound, something called CyberKnife radiation treatments, which you can now get in the U.S. So I met with these two doctors over there, and these were world leaders.
00:42:22
Speaker
quote unquote, and I was seeing them as a private patient. So England has a national healthcare system, but I was seeing them as a private patient because the doctors there do work in private practice. That's how they make more money. So I'm going to pay them cash to treat me and they both tell me to do surgery, not to do their methods because looking at the MRIs, the way that the tumor is located itself, they cannot achieve what they need to achieve with external radiation.
00:42:53
Speaker
No doctor that I saw in the U.S. about radiation said that to me. They said, oh, we can be successful. I also then learned that most of the men who had come through the surgery and are in continent, it is because the cancer had invaded the critical bits related to continents. So one of the sphincter valves has cancer in it. So they have to remove the sphincter valve.
00:43:18
Speaker
or they leave cancer behind. And then they now have something with the surgery they call nerve-sparing. This is the sexual nerve. So we have sexual nerves that wrap around the prostate gland. And now we have surgeons that are trying to not take the nerves. And then men will say, oh, my doctor was so good he didn't take my nerves, or another man had his nerves taken. Well, the debate is, is there cancer in the nerves? So a lot of the men who lose the nerves lose it because it was cancerous.
00:43:47
Speaker
Well, if we're trying to get rid of the cancer, the nerves have to go. The sphincter valve has to go. And so your choice is, do I want to get rid of all the cancer, or do I want to stay continent? Now I don't have any continent's issues. My tumor was located in a good spot relating to those things. So that's part of the misinformation and part of what's so negative on this disease. So it turns out there are some men, I was one of them, based on the location of the tumor,
00:44:15
Speaker
Surgery is our ultimate choice, our best choice, or maybe our only choice. The other benefit of surgery is that it removes what's called a tumor burden. And this is what Carol taught me. So it gets the tumor out. Maybe it gets all of the cancer, but we know straight away because we're going to get a pathology straight away. And my pathology post the surgery, I had a worse cancer than we thought. It was more getting to be a wolf.
00:44:42
Speaker
So the original biopsies did not get the worst parts of the cancer. So you now have this very complete picture and then this, the pathology showed a risk for spread. If you do radiation, you don't get this information. You don't get all the tumor burden out. It's going to take longer months to years to know whether they got all the cancer. Also the side effects that you get from surgery, you can also get from radiation. They just come a few years later.
00:45:10
Speaker
So that's that gray area, you know, in your program, the grief, the gratitude, and the gray, and there's so much gray in life. Our emotions and just on medical terms and what doctors tell you. So that's what I found out. So we hear about over-diagnosis. We hear about over-treatment. Sometimes we hear about under-treatment. Men should fear this and fear that. And that's what this first thing to my brothers, don't fear these things. You can push through the stories, what's in the press.
00:45:39
Speaker
Most of the men that I know that fight this disease are in the 50s and 60s, so it's not an old man's disease. The thing is, we don't screen for it. There's been no national screening program.
00:45:49
Speaker
Now we're beginning to learn, and I mentioned the University of California San Francisco earlier, they're now talking men in their forties. Get screened, get the blood test. We also hear a lot about the blood test and fear it. And the blood test leads to unnecessary biopsies. And you could find this in newsprint everywhere. And my side became, the blood test doesn't make a decision to do a biopsy. The doctor does and the patient does. And this is when I quickly learn what my power is. I decide to.
00:46:20
Speaker
If I'm going to have surgery, that's my decision. And I'm going to hold that as my decision. It may be the doctor's recommendation, but it's my decision. So if you choose to get a blood test, that's your decision. If you choose to get a biopsy, that's your decision. You have the doctor along with you, they write the orders, so it all works through our medical system. So that's what that's about. Don't fear this disease. Thank you. And that part that you said, it's your decision, goes into the second part I was going to read in that same appendix was,
00:46:49
Speaker
Take responsibility for the decisions, actions, and in actions that you do regarding your health. And this could be prostate health or any health or anything in your life. Take responsibility of your decisions, actions, and in actions. So that right there sums up what you just
00:47:07
Speaker
said now and it's so true. It's just because you did something. It's kind of like just because you talk about death doesn't mean that you're going to die. Just because you take a blood at work exam doesn't mean that you already have to decide what your next step is going to be regarding your diagnosis, correct? Correct. Yeah. So thank you.
00:47:31
Speaker
And with everything that you've said, another thing that's important is that even though this is your experience, Keith, and your journey, and you're very clear on this, that this is your experience of your three years, you want to save somebody that in three hours, like you said, in three hours of reading this book, you could probably save people the three years that took you to do all this investigation.
00:47:51
Speaker
But at the same time, everyone has to do the research for themselves. And as you say, be the detective, be the scientist, and self-advocate for yourself, and use this as one of the resources in your journey. Use your book as one of the resources in your journey as you're investigating what is best for you. Anything else that I did not ask you, Keith, that you would like to share with our listeners? And I'll make sure afterwards we talk about
00:48:19
Speaker
where we get the book. Well, let me ask you, Kendra, in the title. Oh, wait a minute. It's being thrown to me? Yeah. So I don't. So you've mentioned that your dad has been checked for plastic cancer, but your husband has not. Why hasn't he?
00:48:50
Speaker
My husband is one of those people that probably like a lot of people that probably doesn't go as often to regular annual checkups, period. So that is kind of how he does it. He's going to be editing this podcast. So he's going to be listening that I'm sharing more of his information. So one thing I like to say, so it's often said, you know, man, don't think about these things.
00:49:19
Speaker
Well, when I raised my daughter alone, so I learned early on, wow, she's barely a teenager and we're talking to doctors. And very shortly after that, we're doing tests and we're looking at ourselves. Guys don't do this. We get a little physical for playing sports. It's kind of a silly physical. That's the extent of what we do.
00:49:43
Speaker
You know, and anyone that knows what you're saying there knows what's happening. And, you know, when you get that done when you're 12 or 15, you go, this is embarrassing and stupid, right? And then maybe they have you urinated a cop and you go, okay, whatever. That's the extent of what we get. So it's not that we don't care. It's not that we think anything wrong. We just haven't been taught. We sort of been taught we slay dragons. We have nothing to worry about.
00:50:07
Speaker
Again, the information is beginning to break now that men in their 40s need to be getting a blood test and a value somewhere around one or less than one on the PSA score is what they want. So that's that I want to reemphasize. The other question I want to ask you is in the title of your podcast, what is the gray mean to you?
00:50:28
Speaker
The gray means that from grief to gratitude, you do not just jump right away to those two periods, from grief to gratitude right away. Sometimes you can use gratitude practice in your process of grieving, but all that gray in between is all that muck and all these other emotions that are right in that middle of it. So that is what gray in between means to me.
00:50:54
Speaker
but it can be something different to whoever reads it. What does it mean to you when you saw the title of the podcast? That's what it means to me. Okay. Darker shades of gray, lighter shades of gray, and you can go back and forth. The title of the podcast is fabulous in that it just really describes what's going on for us. I have not had a lot of grief in my life until this came along. I've lost my mom and my dad, but that's to be expected.
00:51:22
Speaker
We can prepare for those things and move through them perhaps well in some cases. Other people, it's tougher, but we can learn.
00:51:30
Speaker
what our own grief is. And that's always fascinating. How do I handle grief and what is grief to me? The gray has been the most challenging for me. Gratitude's easy. I seem to not overly suffer from grief. And maybe that's a good or a bad thing. I don't know. But the gray, and the gray may be my grief. And so I wanted to ask you your thought on that as I listened to other podcasts. Do we get the gray, the gray and the grief confused? And is it, well, this isn't gray, this is grief going on here.
00:51:57
Speaker
I think we do confuse I think in society we don't talk about enough about grief to realize that what we're experiencing of sadness or maybe disinterest in things in life.
00:52:12
Speaker
that those are signs of grief or retrieving or getting too busy itself can be a way of dealing with grief as well. Getting so busy that we don't actually want to be looking at the reality of things can also be part of how we handle grief. So grief just occurs and then just how we mourn is the ones that we take action. Grief just happens. We don't choose how it is
00:52:41
Speaker
that it's going to happen to each of us. Morning is the action that we take in that journey. You know, in your case, you went ahead and took a road trip, you know, with RV, you went ahead and did, you know, that's how you took action of your grief. So, so yeah, that's, that would be curious for you to kind of maybe assess. And I'm just, I'm sure that your own journey
00:53:04
Speaker
I'm sure I shouldn't be assuming. I'm wondering, let me put it this way. Is your own journey of navigating through this yourself now helping you in giving the tools to help navigate your friend Carol's journey, help her as well as now help your son who's also dealing with some grief in his life. Even if it's different, it may not have to do with health or not. Do you feel that it gives you an insight or
00:53:31
Speaker
empathy towards other people's journeys. It does. And I'm learning in a number of your other podcasts, as I've listened to them, and I'm going to go back and listen more because I find myself not exactly listening because I quickly get into myself. I think some of what I have thought has been gray, let me go do detective work, or let me go be patient scientist work, something I like to talk about in the book, I may have just been grieving.
00:53:59
Speaker
And I didn't realize it. And so now, going forward, one of the things that I'm going to do, because prostate cancer stays with me, and I'm still testing, and we're still wondering what's happening with it. The grief is just here. And so I think I'm going to explore it a little bit more and say that it's OK. Carol is grieving by withdrawing. And she's open about it. She says I'm going to withdraw.
00:54:21
Speaker
Because I'm like, I'll come right over. She's like, no, don't, doesn't want it. And I wanted to go, but that's me. That's not what she wants. She knows I'll get on an airplane tomorrow if she asks me to, but she's asking me not to. So I have to give her her grief. So it's a fairly new area to explore for me. So thank you for the, just the title of the concept, the title of the podcast just struck me. I'm like, oh my gosh, something new I need to learn about myself now.
00:54:50
Speaker
I love it. We're constantly learning. That's why we're still around, right? We're still learning and exploring. We never stop being the student and learning from each other. And this podcast is going to be one that's going to teach many others as well as how to be
00:55:10
Speaker
their own scientists as well. So I appreciate you taking the time to sharing your story, to writing this book, and let's go into how people can find it and what's the best way. And I'll tag, of course, in the show notes, the website.
00:55:27
Speaker
Well, it's it's distributed like like most books, so it can be purchased on any major platform, Amazon and all the rest. Just look for the book title and it will come up. Prostate Cancer Sheep are worth and she'll come to come right up and you can place an order and book sales always help us do this. I know you're you're donating a lot of your time and effort to your podcast. And my book's not going to be a number one best seller.
00:55:54
Speaker
I am just a patient and there's not going to be action figures in movies that go along with this. Also, I'm very willing if anyone listening to this would like, I do give books away if they want to go to my website, which is sheeporwolfcancer.com.
00:56:11
Speaker
and just fill out the contact form. It's very simple. I don't ask much. Just say that they heard us, you know, talking on your show, Kendra. I'd be happy to post them a book if they would like. Thank you. You know, you say this may not be a number one seller, but this may be a number one saver for savior for someone else that's trying to find this research. So it's not about, and this is how I feel even about my podcast, is not about whether I made
00:56:39
Speaker
the charts of the Top Listen podcast. But did I, in some way, shape, or form, help one person shift their perspective about grief or give them some hope? And that is what you're doing by being on this podcast, being a guest, as well as writing your book. So thank you. You're welcome. Thank you.
00:57:00
Speaker
Thank you. And again, once again, this was Murray Keith Wadsworth that we had on the podcast and his book, Prostate Cancer Sheep or Wolf can be found everywhere and look in the link below on the show notes. Thank you once again. Thank you.
00:57:22
Speaker
Thank you again so much for choosing to listen today. I hope that you can take away a few nuggets from today's episode that can bring you comfort in your times of grief. If so, it would mean so much to me if you would rate and comment on this episode. And if you feel inspired in some way to share it with someone who may need to hear this, please do so.
00:57:51
Speaker
Also, if you or someone you know has a story of grief and gratitude that should be shared so that others can be inspired as well, please reach out to me. And thanks once again for tuning into Grief Gratitude and the Gray in Between podcast. Have a beautiful day.