Hi, my name is Craig Deatherage. By way of background, I was raised in Iowa for the first 22 years of my life. Went to four years of college, but I didn't graduate. I didn't get a degree because I really didn't know what I wanted to do in life. Found the military was a draw, so I joined the United States Air Force in 1982. Met and married my wife at technical school because right out of basic training, you go to technical school to learn your trade. I proposed to Jeanette a week after we met, and two months later we were married. We've been married now for almost 40 years. So actually, next week is our 40th anniversary. We've had a wonderful life, raised two girls and we now have a delightful grandson and another one on the way.
We moved here, Jeanette was from Green Bay and I was from Iowa and neither of us wanted to live in snow the rest of our lives. So we moved to South Florida to Coral Springs and we've been enjoying life here with our grandson. I'm fully retired, Jeanette still works. And we are, I suppose, living the dream. We're we're just very happy here and surrounded by love and family and it's been that way for the last three years. I was diagnosed with prostate cancer five years ago when I was working in Panama City, Florida. And my boss at the time was a former urologist who specialized in stage four prostate cancer. When I called and said, "Look, boss, I just had a five hour episode of peeing blood and startling, what can you tell me about that?" And he said, "Craig, don't even lift a gallon of milk. I want you to go to an urgent care clinic tomorrow and get your prostate checked out and then I want you to get in with the local urology clinic and get checked out."
So the process started there, but it didn't really start there, because I had been ignoring symptoms for about a year. You ignore the incontinence, you ignore the urgency, the frequency. I felt like a five year old sometimes running to the restroom and I had this sense of urgency that was just ridiculous. I would go to the restroom and come back and my coworkers would say, "Craig, are you okay?" I'd say, "Yeah, I need to more often now that I'm older." They just accepted that, nobody thought anything different. There were erectile dysfunction issues that I was ignoring because over 55, that's just naturally going to happen. So you ignore all of the symptoms right up until you have a startling little thing that causes you to break out of your routine. I really wasn't fond of going to doctors, so it took that kind of an episode to get me to go into an urgent care and then to get me to go into a urology clinic.
They diagnosed me as stage four with mets. I was a Gleason 5+4, for those of you who know what the Gleason numbers are. If you don't, it's easy to Google, just look it up. A 5+4 is a significant diagnosis for stage four cancer. We had to start our journey there.
Jeanette and I stepped back and took a look at what was happening and we were trying to figure out how to tell our children this because we had some significant life moments coming up. My younger daughter was graduating with her bachelor's degree. My older daughter was just engaged and thinking about getting married. We had to time telling our family without delaying it too long. So, it happened after the graduation. We actually wound up telling them in the parking lot of a pet store, and then we all went in and just petted puppies and played with dogs for a little while to give them an emotional outlet for that.
Then we all sat down and had a good open talk about what stage four prostate cancer is and what they should expect my journey to look like. We talked openly about the statistics, but also talked about the fact that I was a young man who probably was going to beat those statistics because I'm not an 80 year old who's just learned about this and may even pass away from something else as the treatment progressed.
Five years ago when I was diagnosed with stage four prostate cancer, I didn't know what a prostate was, to be honest. I didn't know what it was shaped like. I kind of understood that a doctor checked it in the finger wave process, but that had only happened to me three times since I had turned 50. I wasn't entirely sure what he was after, what he was checking for. No doctor ever sat me down and said, "Hey, this is what we are doing with this process. This is what we're looking for, an enlarged or an oddly shaped prostate, this is what your prostate should look like." Inside one of their little medical models that they have sitting in offices. Simply never had that conversation with a doctor, so would've loved to have known what is that? Because now it sounds like it could kill me, but I have no idea what we're talking about.
So I was given the book, Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. My initial urologist gave me that book and said, "Craig, here's a book I want you to read." And I took a look at this 800 page tone of information or whatever. It was daunting. Then I looked inside and I said, "Oh, I just need to read chapter 8, 13, 14, and 17." Whatever the chapters were. I said, "The rest of this is for people with stage one, two, or three cancer. I don't need that. I need to know about my prostate cancer and metastases. I need to know about diet, health and exercise. I need to know about how to take do self care and take care of myself and take care of my family and walk the journey in an intelligent and informed way."
So once I knew what parts of the book I needed to read, it became a lot less daunting and it was an easy thing to do. Plus Google or any search engine is a wonderful way to learn whatever you want to learn. I would advise anybody who's on this journey to stay away from the dire statistics or anything like that. Don't let it become your personality, don't let it become your identity. Treat it as though it's anything else from a disease and just approach it in a very positive way, saying this is something I can beat. This is something that medical science has wrapped its arms around for 40 years or more, and we're in a pretty good place. Yes, people still die of this, but as a general rule...
I was a PSA of 77 when they drew my PSA in 2017. I had been a PSA of 1.4 in 2011. There were no PSAs from 2011 to 2017 in my records anywhere. No doctor had performed a PSA. So we went from a 1.4 to a 77 in a six year period and I was just blissfully unaware of what a prostate was. So if there was any one thing had, it was just how critical that little bugger is.
I will say the stage four prostate cancer diagnosis was interesting for me. They did a PET scan, and the PET scan is fascinating because they did one with a contrast and it came back. I got a copy of the PET scan and I pulled it up on my computer and my coworkers surrounded me. We were all looking at the images and most of my coworkers were young women and I said, "Before we do this, if you feel uncomfortable, just step out of my office. Don't mind stepping out of my office." But we pulled up the imagery and that was the first time I had seen the imagery and I found it fascinating. I didn't feel afraid and I didn't feel worried. That's the stuff, other than for my family. When I thought about possible outcomes, it was always about how that affects my family, not how it affects me.
I'm very comfortable with where I am in life in terms of my faith and in terms of my spirituality, so I wasn't worried about me. Also, my older daughter said, "Dad, you just kind in denial." And I said, "I don't think I am in denial, I'm just comfortable with where I am. So other than taking care of your mom and making sure you girls understand that I'm living a happy life, a good life, and I continue to live a happy and a good life for as long as I can, this is not going to be my personality. It's not going to be the definition of my identity. It's going to be something I have, just like I have allergies, although a little more serious. The treatments are a little more invasive sometimes and can have side effects. So we learn to live through the side effects, live through the treatment regimen and the scheduling of the treatments over time."
But five years later, I am beating statistics and I continue to have a very positive outlook. There are some very unique things that are promising that are happening in the research field, which probably will yield results well within my lifespan and I expect could extend my lifespan significantly. One of the things that I became very familiar with in my military career, we had 13 moves in my military career, so I never had what you would call a family physician. So, I was very familiar with the whole idea of these are medical professionals, I'm going to trust medical professionals, I'm going to do what they advise. So when I got the diagnosis, I got it in Panama City, Florida. Three years later, I found myself moving to Tallahassee for job purposes. Fortunately, my urologist and radiation oncologist in Panama City steered me directly to friends of theirs who they believed were some of the finest in the state in that area.
So, I connected directly with those people and they continued the treatment. They said, "We like the course of treatment you're on. We like the results that we've gotten." Because my PSA has been zero for five years now or nearly five years. You can't argue with those results. Then my wife and I, when we decided to fully retire and move, my boss said, "Craig, if I can give you 10 good years, how would you feel about that" And I said, "I'd rather have 20, but I hear what you're saying." Then I said, "But you just made me redefine what a good year is. A good year is spending time with my family, not working." I wasn't rich, I'm not wealthy, but I was at least well enough set that I could retire early and go and spend time with my family. I made an active choice to retire early and spend time with the family.
So Jeanette's been very supportive and has gone along with that. And early retirement has implications for both the couple and the family at large. But we got ourselves into a position where we were with family. So we went down to Coral Springs and Tallahassee doctors happen to have connections down to a urologist and oncologist here in Coral Springs. They're a connected bunch of people. They know each other, they know what their educations are. They would talk with me about, this guy is particularly good if you have to have a surgery. He's probably the best robotic surgery guy in the state, versus this guy who's really the best theory guy in the state. And he's going to give you the best advice about how to approach your treatment process.
And so I wound up fairly seamlessly going from Panama City to Tallahassee to Coral Springs. The thing that surprised me the most, and made me laugh out loud whenever I heard it was, Craig, this is your journey. So, you have to take charge of it and we're going to give you advice, but we can't tell you what to do. You have to decide what to do. I thought, great, you take the least educated guy in the room and put him in charge of the cancer journey. But I had extraordinary advice at every stage, and I found I had very personable doctors who took time with me as a patient. They just didn't shuffle me in and shuffle me out. But they've taken time with me as a patient and talked about where I am and where we expect to be in a year, two years, five years, given me a look forward about what happens with guys who are in my stage and what they would plan for next stage treatments and options when that happens.
But I am not at a point where I am in a transition from my treatment. My treatment's working perfectly. I told my doctor, "If it ain't broke, don't fix it." We're going to continue on this until it doesn't work. When it stops working, then yes, we will move on to a next stage treatment. Hopefully that next stage treatment is around the corner that might present either an extension of the efficacy of the treatments or a cure. So that's where the journey has been for me, just seamless and dealing with some of the best professionals I could over ever hope to meet and be in their charge, even though they place all the responsibility for decisions on me.
My treatment started with a urologist, and then I wound up working with a urologist, an oncologist and a radiation oncologist, which was fine, but it was a little bit too many cooks in the fire. So, I pulled back, and because the urology institute had a full practice team approach to what they did, I was primarily under the care of my urologist. The urologist was the one who administered the androgen deprivation therapy as well as the bone therapy. The Xgeva and was the bone therapy and the Firmagon, or some people might know it as Degarelix, was the androgen deprivation therapy.
They started me on Zytiga initially as the oral pill that I would take. Then because Zytiga requires that you also take prednisone, just a little five milligram prednisone every day. But when we started talking about immunotherapy, I had to switch to Xtandi rather than Zytiga because I could not be on prednisone while I went through the provenge therapy, the immunotherapy. I had a full round of radium-223, which I can't remember the commercial name for that. But I had a six week course of radium-223 where alpha particles attach themselves to the lesions on your skeletal structure, because there were a lot of lesions from my skull down through my chest and my scapula, to my rib cage down into my hips, and certainly down through my spine. They kind of stopped there. They didn't go down into my legs, but lot of lesions. So that bone therapy, the Xgeva, was a necessary monthly shot. I also take calcium on a daily basis to address bone health.
But I've had to stop Xgeva just recently. I'm one of the 1% or less who wound up with osteonecrosis, which is dead bone. In my case, I have dead bone in my jaw and I've lost a tooth as a result. So we're waiting for the dead bone to get removed before I can even think about having a bridge or an insert done on that side of my jaw. But I've had a number of skeletal pains and issues that have to be addressed. Tomorrow I'm getting an injection for L3-L4, as a diagnostic injection to determine whether or not we're going to do a surgery to remove some of the back of L3-L4 and loosen up the pressure on my nerve root.
So, there are skeletal issues that are associated with this. There are also the androgen deprivation therapy issues, some of which you can read about them when you pull up any kind of a search on androgen deprivation. But it's going to be things like hot flashes, my doctor initially said, "Craig, you're going to get hot flashes. You want some megestrol, which is what we give women for going through menopause?" I laughed and I said, "No, I could handle that." I called him a month later and I said, You know what, why don't you give me the megestrol, because those hot flashes are significant." So I thought, yeah, I could tough this out, but I could not. It was much better not to be sweating in public when I was public speaking and just suddenly break out in a sweat from a hot flash. So, I let that experience kind of ride for a little while and then called my urologist and just asked him, "Please go ahead and give me a prescription for megestrol."
The treatments have been ongoing throughout the five years. I take one injection a month of Firmagon, Degarelix, which is the androgen deprivation. That's done in the stomach, that's done subcutaneously in the stomach. So, I just go into my urologist's office and get that injection once a month. I had mine yesterday, in fact. The area swells up a little bit, maybe a size of a three to four inch circle. You can see the injection site, it gets red, it gets hot for two or three days. My grandson loves to put his hand on my belly and feel that, "Grandpa, did you get your shot? Did you get your injection?" So he finds it interesting to follow the treatment. I've had 54 of the injections of Firmagon. I have had 48 injections of Xgeva, which is the bone health injection.
When we discovered the osteonecrosis, I was using an oncologist at the time to do that shot. I told his nurse about it when I went in from my monthly shot, and she immediately took off into the doctor's office and came back out and said, "You're not doing these shots anymore. We have to stop these." I had discovered that through the oral surgeon I was seeing, because I was having bone health issues in my jaw, I had not connected it to Xgeva. But the oral surgeon immediately connected it to Xgeva and said, "You need to get off this drug." So when I went to my oncologist, fortunately that was only two days after I had seen my oral surgeon, and they both were in complete agreement that this was not something I should continue. So that only happened just several months ago that I stopped the Xgeva. Still taking calcium for bone health, but I no longer take the Xgeva.
I do take the Xtandi, which is androgen deprivation also. I take that daily, that's four pills a day. They're rather large horse pill like pills. I take megestrol every day. I take a pain pill every day, and I think that's everything I do. The calcium I take every day, and that's everything I do for medicine and medication. My grandson actually feeds me all of my pills. I take the canister, the little container open over to him in the morning, and then I take one over in the evening and he feeds me my morning pills and he feeds me my evening pills. He's four years old. He's just delighted to be able to feed me pills. So, that's a special part of our day. It turns what could be an odious or tedious experience into something that's joyful. That's just a lot of fun.
So, there are a few things that people are reticent to talk about in terms of androgen deprivation therapy, in terms of the various medications you're going to take if you have advanced prostate issues and largely sexual issues. Some are of course incontinence, some are erectile dysfunction. One of them is shrinkage of your penis and your testicles. That can be embarrassing and it can actually lead to some men leaving their treatment program because they simply can't reconcile themselves from an ego standpoint. And I say ego in terms of maybe ID in terms of this is who I am. If that's where your life is centered, I would say let it go and live the journey of I need to let go of some of the things in my life in order to truly find the joy in every other aspect of my life and live a wonderful life. One that I truly find spiritual and emotional fulfillment in.
Looking back to the initial diagnosis and then how I informed my family and how I informed my coworkers, how I've lived my life subsequent to that, how I've approached treatment, there are not a lot of things I would've done differently. I'm pretty satisfied with the journey I've been on. But very early on, the amount of education that I had on this, I think if I would have to go pre-diagnosis to say men really are terrible, as a general rule, and I realize I'm generalizing, but women have women's healthcare symposiums and women's clinics and all that kind of thing, and men just really ignore all of that. They are just not accepting.
If I was going to go back and relive Craig Deatherage, I would probably care a lot more about men's health in general and educating myself more about the internal parts of my body more than the external parts of my body. You work out and you care about whether or not your muscles are in shape or whether I'm going to have a beard or not have a beard, or all the superficial external stuff. But we don't pay enough attention as men, and I'm generalizing, but I just don't believe we pay enough attention.
So, where women have a women's symposium, if there's not a mirror men's symposium for healthcare, there really should be. We ought to be drawing men in for group discussions. Let's bring a couple hundred men into a room and just run through the cardiovascular system or run through whatever systems in the body that men tend to suffer from and need to maintain in an intelligent way throughout their lives in order to have a good quality of life in retirement. I would say that my takeaway is that I wouldn't have ignored so much about the inside of my body before the diagnosis ever happened.
I've been following research about the things that are coming online for prostate cancer care, specifically for advanced prostate cancer care, for five years now. One of the most unique things I've seen just in the past, I saw it about a month ago, but it's apparently maybe eight month old research, give or take, is CRY1 research that they're doing. They're finding out that androgen deprivation therapy, the efficacy, the effect of androgen deprivation therapy can be shortened by the disruption of the circadian rhythm of the... I can't remember exactly the component. But effectively you have a circadian rhythm, and within the prostate, if this process gets disrupted, it can shorten the treatment cycle of your drugs. So they're looking for ways now to unblock the androgen deprivation therapy to unblock CRY1, which is one of the processes in your body or chemicals in your body. Thereby, extend the length of time that your androgen deprivation therapy treatment can effectively work. So, I think that's very promising.
I was told right up front we've got treat got cures for a lot of stage four cancers. We don't have a cure for stage four prostate cancer, but we can extend your life by a pretty fair amount of time. And certainly if they find a way now to unblock the CRY1, extend the life cycle of the androgen deprivation therapy, I find that very exciting news, because I consider myself to have somewhere between 15 and 20 good years left before I have to start worrying about really serious bone problems. I've had a few bone problems, but I think I can keep the bone problems managed. If we can do that and we can keep the cancer from flaring back up and getting into the major organs, which is when you're really in trouble. I was really fortunate that it didn't get into my major organs because it starts to shut down major organs and that's when you probably ought to make sure your will is up to date.
But for me, I didn't get to that stage, even though I had stage four with mets. I was just blessed that we found it early enough, stage four with mets. I found it early enough that it wasn't in my major organs. So it was something we could address and do good things with. I have a very optimistic outlook for my future and for the future of the research that's being done. CRISPR probably presents extraordinary opportunities for actually finding a cure. But in the meantime, if we can extend the efficacy of treatment, I think that's just exceptional.
I don't think I can emphasize enough the importance that I've had with family and friends, the support I've had with them. Partially because I don't ask for help easily, so as somebody who's supposed to advocate for myself, they have been so incredibly important to me, but not just in that role. They've been important in teaching me how to ask for help around the house, to ask for help with what I used to consider to be routine things that I could do that I simply can't do anymore. I get fatigued easily. I break out into a sweat when I'm out in the garage for five minutes. I can't do things that I used to be able to do. My son-in-law and I just put up a garage door opener. What that really means is my son-in-law put up my garage door opener for me, and I sat out there and watched. I hate to do that. That's something that's very hard for me.
But it's been so important not just to have the love and the care of my family, but to have them sometimes put a thumb on me and say, "You need to stop and let us do things for you." I've been so grateful to both my daughters, my wife, my son-in-law, for the help they've given me. Then I also have a four year old grandson I take care of on a regular basis. The joy that he brings to my life, the simple joy that he continues to remind me of every day, that's my real mission and that's my purpose, is to be joyful and to bring that into the world. Those are probably the most important things that family do for you, is to humble you a little bit and to help you to learn how to ask for help even when you're not accustomed to doing that.
I was never one to go to a doctor willingly before. I was an air crew member in the Air Force. And if you [inaudible 00:32:25] doctor, it meant you couldn't fly. If somebody else has to pick up those flying hours for you and they have to do work that you are supposed to be doing. Command never actually discouraged anybody from going to a doctor, but you just sort of had a culture of people who didn't go to a doctor unless you were really, really feeling it. So my family, through this journey, has been incredibly important. I'm supposed to be my own self advocate, and that's something that every single doctor has told me. My urologist, my radiologist, my oncologist, everybody, my pain management folks, they all say, "You've got to be your best advocate." They say, "Don't be a hero, suffer needlessly because you're not doing it to anybody but yourself. But the truth is you're doing it to more than yourself. You're doing it to your family too."
My wife has started to remind me frequently that when I'm in pain, she's in pain be. So, I have to be more careful about taking care of myself and seeking pain treatments because I'll usually let something go rather than go to the doctor until it's just almost unbearable. She doesn't tolerate that anymore. She says, "You need to get into the doctor and take care of yourself." So, that's something that, as your own advocate...
One of the funniest things that happened to me with one of my doctors, not funny haha, but just observationally funny, was I was sitting with my first oncologist and he said, "Craig, you're going to be your best advocate. Here are the five things we have available for you in our toolbox. You can either do them quickly, you can do them slowly, we can spread them out over several years. We can try to get them all in as your insurance will pay for them and just be very aggressive about it. But you're the one who has to make those choices." And I said, "Well, that's great. The least informed person in the room is the person who has to make those choices."
But rely on your doctors to give you a really important set of perspectives on what's available, and then go talk to your family about how you want to do that, is really the approach I took. We went ahead and went with a very aggressive treatment route and it served me well for the past five years. I'm here to tell you I'm happy with the treatment I've gotten. We've lived in three different cities in five years, and I've had extraordinary medical help from the technicians, the nurses, the physicians that I have, and they've been exceptional at every stage. So, I am very well taken care of.
But again, as your own self advocate, you have to get in there and you have to make the phone calls, and you have to get those appointments and be consistent with it. You have to listen to your doctors, you have to take your medicine on time, and you have to live with the side effects because some people just stop taking their medicine based on the side effects. That's something I can't recommend to anybody. Side effects are there to keep you alive. As part of the medications are keeping you alive and the side effects are just a part of your life. So I try to treat the side effects as blessings in my life too, because [inaudible 00:35:51] is just an opportunity to say thanks for the fact that I'm still alive.