Number one, I have a very aggressive general practitioner, who I’ve been with probably 15 years. He’s got me trained to where I come in for annual physicals. Because of hypertension, my blood pressure, and borderline diabetes I’ve going in every 6 months, and doing blood work basically every 3 months, because he’s watching my kidneys and liver as well, from the early days when I had hypertension and didn’t know it. It was undiagnosed. So, he was watching all of this for me and he’d ran a PSA, and in the PSA he didn’t like what he saw. He called me. We’ve got more than a doctor/patient relationship number one, let me throw that out. So, he called me at home and told me that, “Carl, I’ve made an appointment with my urologist,” which was his urologist, for the next day, “and I want you to go see him.”
I told him okay. I said, “What’s going on?”
He said, “I saw some things in the blood work that indicate that there may be some cancer, and it’s tied to prostate.
I said, “Not a problem. What time, I need to be there tomorrow?” He told me; so, obviously I was there. Dr. Drake and I was sit down, had a conversation. Come to find out, he and I were fraternity brothers, Omega Psi Phi. He went over at Howard and I went over at A&T here in North Carolina. So we were talking, and he says, “Okay, here’s where we are. The blood work is telling us one thing. What I want to do is a digital rectal exam.” I told him his fingers were too big. So anyway, we had that.
He says, “Carl,” he says, “your prostate is normal. It’s right size. I don’t feel any lesions.” He said, “But,” he kept looking at the printout on my blood work. He said, “I don’t like what that’s telling me. That’s telling me something’s going on somewhere.”
I said, “Okay, what’s my options?”
He said, “You can watch and wait, active surveillance, or we can do a biopsy.”
I said, “Dr. Drake,” I said, “You old enough, like I am, to remember Stuffy Smith and the guy that walked around with the cloud over his head. I’m not the kind of guy to walk around with a cloud over my head for 3 months to come back to find out what I’m dealing with. Let’s do the biopsy.”
So he schedule me for the biopsy, the following week. I did that. If I remember correctly it was 16 cores that he took. Out of the 16, I had 4 that were cancerous. All on the left side. So, I told him that day… Well: my wife and I were there. We went back to get the results. My wife is a 3 time cancer survivor leukemia, renal, and breast. he came in and he says, “Carl,” he said, “found 4 on your left side, and it’s prostate cancer.” Well, believe it or not, my wife and I started laughing. Now, don’t think I’m off my rocker, but we started laughing because the joke was if she got sick, I wanted to be sick, or if I got sick, she wanted to be sick. I guess 30 years together, you get like that.
So, he had a very puzzled look on his face. I just told this man he has prostate cancer and he and his wife are both laughing. So, we explained to him why we were laughing. I said, “Okay.” I said, “I want it out of my body. I want the cancer out. I want the prostatectomy.”
He said, “Well, you come right away with that.” He said, “You don’t want to give it any thought? You haven’t even asked about what your other options are.”
I said, “No. I want it out of my body, so I don’t have to worry about it.”
He said, “Well, fine.” He said, “Let me tell you about the Brachytherapy, and all the others. I need to walk through what your options are. You may change your mind.”
I sat. I listened. I said, “I haven’t changed my mind. I want the prostate out of my body with the cancer. I’m blessed that it’s all contained within the prostate. It hadn’t gone any where else. I’m blessed to have an aggressive general practitioner to catch this thing in stage 1. You know. Let’s do this.”
He said, “Because you’ve got a heart condition,” which I’ve had a stint and a defibrillator. He said, “I’ve need to get Dr. Janick and Dr. Brezinski to sign off.” Ironically, all of my doctors know one another, and I’ve developed a more than patient/doctor relationship with them. I’m a very outgoing, extroverted type person, which you can probably tell already. Dr. Brezinski and Jancik told me, “No, you can’t have that surgery. You’d die on the table. Your heart couldn’t take it.”
I put up a little argument, because that was what I wanted. They let me know they weren’t signing anything for me to even have that risk. Dr. Brezinski said, “Carl, I’m talking to you as if you a member of my family. NO.” So, I went back to Dr. Drake. Told him what my cardiologist said. So, let’s go over the other options again. So, my wife and I sat and listened. He laid it all out.
I said, “Okay. Seeds.” I said, “I’ll go with the seeds. The radiation from outside of my body, I can’t wrap my head around you guys getting my body in the exact same position for,” I think it was 6 weeks, 8 weeks, or something like that. I said, “I just can’t wrap my head around that, and then the side effects of it possibly effecting my bladder, my kidneys, my intestines. No, that’s off the table. Doing nothing is certainly off the table. I’m a Christian. I believe in my faith, and this technology wouldn’t be here if God didn’t give man the knowledge to discover it and apply it. So, I said, “I had a… I’m an active man and I had a friend who had seeds, and did very well with it until he got too relaxed and didn’t continue to get check-ups. Which it came back and metastasized and at the point they found it it was too late. When he got the seeds… The guy was doing so well. I mean the man was just doing great. So, I made the decision, okay, seeds. Which as you know is one of the most invasive procedures.
So, I selected the seeds, and I’ve got I think it’s 86 seeds. I’m blessed because the cancer was contained within the prostate. I was in stage 1, and we put the radioactive seeds in. I go every 6 months to Dr. [inaudible 00:10:04] who’s my urologist now and get checked. I told him I don’t want to be checked by the PA. I want to be checked by you. Put that in writing that this is what the patient is requiring and requesting. We had a laugh about it. He said, “Fine. I understand.” That’s what I do. When I came home, I had to stay in the room away from my daughters who were married. One had a child and the other they were trying. I had to stay away from my grandkids. That was difficult because they couldn’t understand why grandaddy couldn’t hug ’em and they come sit in my lap and play and all this stuff. So, that was difficult part of it. Being a very active and outgoing person, staying home was running me nuts, being a type A person, but thank goodness for a telephone and the TV. Well, I watch too much TV and I’m an analytical person as it is and I’m analyzing shows on TV. Saying police wouldn’t go in there without a vest on and all this stuff. My wife says, “How many more days you got? We got to get you out of this house.”
I even wrote the NFL about… I can appreciate the guys wearing pink, but how many of those 22 football players got ovaries, Fallopian tubes, or vaginas? When am I going to see some baby blue? I started really… well, at one point I got angry because I just felt enough wasn’t being done for us. I recovered, and Dr. Drake had recommended I join the Wilmington prostate cancer support group. He said, “Carl, go check them out. There’s about 125 guys that’s been in this position, have walked in these shoes, and they can talk to you about their experiences and what they went through.
Like most men, I went through my depression period, but this group really helped me. They really helped me, because, we were talking big boy talk and just putting it on the table like it was. That’s what I needed and that was what I wanted. As a result of that, I joined the group. Two years ago, they elected me to the board of directors. One of the things that the organization wanted to do was move more and do more in the black community. Other than myself, it was 3 other guys that were black in there, but only 2 of us were actives. When I say active, that’s going out in the community, setting up tables downtown at street fairs and farmers markets, handing out information. I was contacting other ministers about coming to their church to do presentations to their men’s group and that type of thing, that, as well as the entire community. I’m looking at numbers of African-American cases increasing and everyone else decreasing.
I’ve got to say these white men were supportive of me, because one member of that group would always go with me. The joke was Carl can a white boy go with you? I said, “Man, come on. We dealing beyond race and color. We dealing with something here that God gave all us men. We’re wired with prostates.” Again, it was a joke. They meant it as a joke. They were much more open minded than that. We were all serious about the lack of research that was being done for us as far as prostate cancer versus what Susan B Koman and women were getting on their end. I learned real quick that it’s because we don’t talk. We keep it to ourselves. We don’t tell our other male counter parts that hey this is what we’re dealing with, and this is how I caught it at this stage, and this is how it’s being treated. At some point in our lives, we’re going to have to deal with that. If you look within your family and you’ve got cancer, that puts you more at risk. I was shocked at the number of guys, that I knew, who didn’t even want to have the conversation.
I said, “Man, do you realize you don’t have a choice in this? That at some point you have to deal with this. We’re talking life and death here.” I said, “I have some grand-boys I want to take to Chicago Bears football game. I don’t want to be laying in a bed with them just looking down at me and go, ‘poor granddad.'” I just kept pushing the issue, and still pushing the issue, to talk with these guys and men period about it. Interestingly enough, after my surgery, I guess maybe 6 weeks later, 8 weeks later, my priest, I’m an Episcopalian… my priest asked me to do a sermon. The liturgy that Sunday was Jesus healing the lepers. He told them after he healed them to go tell. With me that resonated about prostate cancer.
“Carl, go tell. Go talk about it.
that we share with you our experiences and why, that you’re not alone in this, here’s a resource for you. I tell the same story, black or white, that you’re wired with the prostate and at some point it’s going to go haywire. Now you’re more at risk if you got cancer in your family. I use the example of having two uncles that died from prostate cancer, and aunt that died from colon cancer, and another aunt on my mother’s side who died from ovarian cancer. I’m the first male in that direct bloodline to have cancer, period.
The first thing I did when my doc told me was to tell my brother, then my son. Of course, I told my daughters to tell their husbands, and I talked with their husbands. I went out on a camping, like I said, to my Masonic lodges, the churches, on Chapel Nova, the VFW, and Chapel Net American Legion. I asked the guys for an afternoon to do presentations. I reach out in that fashion.
They don’t want the DRE. That’s the first thing. They don’t want a digital rectal exam. I explained that a PSA is a simple blood work request to doctors who do that. Some of these guys have point blank told me, “I don’t want to know.” Then I go to, “What about your wife? What about your children? What about your grandchildren? Do it for them.” I just go through the whole family.
I’ve even gotten to a point when some of the brothers are more concerned about their dicks getting hard and not getting high, and I just tell them … I say, “Look man, you’re 65 years old. Come on. Let’s be real. How much do you really think you’re doing?” I put it out there. I seriously just flat out put it out there and especially some of them that I know who have blood pressure problem. I know what blood pressure pills can do to you as far as ED and that kind of stuff. I said, “It’s about living. It’s about life and death.” Life is more than just sex.” I go back to the grandchildren and children, some listen.
Our health department here in Wilmington works with us. I was the director of the Equal Employment Opportunity Enforcement and Hood Enforcement here, so I had good relationships with the director of our health department. In September, they do free screening for us. We do mass mailings, newspaper, ads, radio interviews, television interviews. We got a couple of television reporters that are prostate cancer survivors, and we get them to talk about it.
I now include ladies in what we’re doing, because they have an active … a couple of, two or three groups here, that speak and work with ladies regarding breast cancer and ovarian cancer and what have you. I’ve invited them to some of my activities, and they’ve invited me to some of theirs so that we all can learn and share the story.
Dead men don’t make love either. You should see the looks on some of their faces. When I just point blank … This came from one of my 85-year-old members in my club. I came back and I was telling him how frustrated I was getting from getting that from the guys, not so much the ladies, but from the guys. Hank, I think it was, said, “Carl, tell them don’t make love either.” I used that. Typically 99.9% of the time, male or female, it stops them in their tracks.
We’re not seeking any treatment at all. We’re not participating in studies that are out there. What may work in a European, Caucasian, white, however you want to define it, if it’s working for them I’m willing to take that risk versus not doing anything and die the painful death I saw my two uncles die from. I also tell the story that one of my uncles told me. He said, “Carl, when you turn 40 get checked. I should not be laying here on this bed dying.” He said, “Nephew this is my fault.” I get personal. I really get personal with them. It has worked for me.
I have had a couple of brothers that came to a prostate cancer meeting after a clinic and screening and wanted to credit me with saving their live. I said, “No.” I said, “God saved your life. He just sent me there to tell you my story when you were telling me that you weren’t going to get screened and weren’t going to get checked.” I said, “He’s the one that made you listen to me. You made the decision to go back in that backroom and get checked and found out that you were a stage two, or stage three, or stage one, or you were clear.”
I said, “You were man enough to come here and in front of this group you recognized me and you say what you said, but I can’t take credit for it. I said, “Just pass it on. Play it forward. Talk with some other men.” That’s what I do. That’s what I do.
If you’re male, I’ll talk to you.
God doesn’t reconcile it, number one. He has put the knowledge, he has put treatment here which man had knowledge to discover, and man that to apply just like the radioactive seeds. It’s for man to make the decision as to whether you’re going to take advantage of it or not. It goes back to the Garden of Eden. When we ate from the forbidden fruit we had the power of knowledge of right and wrong
We have to make the decision to go and get checked. I have talked to men here at home who had insurance. I’m not talking about people that doesn’t necessarily not have insurance. I’m taking that population out. I’m talking guys, educated men, I’m talking men that are working in Corning Glass, General Electric, DuPont, state government, county government, got insurance but will not have a PSA, will not request a PSA from their general practitioner, nor will they go to a urologist.
I’ll ask them, “Did you get up a lot and pee?” and start a conversation there, or I’ll go at it from talking about my being diabetic and how I started peeing a lot and drinking fluids a lot. When I was checked I found out I was diabetic. Diabetes runs in my family. Then I started checking on everything that runs in my family. I asked them typical, black man diseases, hypertension, “Have you been checked for that?” “Bird, no man. I really hadn’t.” Yeah, they had the headaches and yada, yada, yada. I’m saying, “Bro, Why haven’t you gone to the doctor? You got insurance.”
Here it go back to, “We, for whatever reason, think that makes us less than a man.” There’s some guys that told me, my age, 63, “I don’t want to know.” They point blank tell me, “I’d just rather die.” I say, “It’s not that simple.” I said, “Why suffer going towards death when you don’t have to?” We’ve got the technology out here. God allowed it here for a reason. Take advantage of it. You got a good job. You got insurance.
Then the sex thing, I’m talking to guys that are 60+ and I point blank ask them, “How much do you think you’re doing? Let’s be real. If you keep screwing around with Viagra, you’re going to die from a heart attack.” I’ve asked them, “Have you had your heart checked? You’re around here taking 50 and 100 mgs Viagra, and you haven’t even checked your heart.” I just lay it out there, bro.
That’s what I do. Here’s one of the things that I do at some of the endings of my presentations. I ask the guys, and in our group we bring our wives and sweethearts and significant others. We have big boy and big girl conversations. The women understand what we go through as far as the depression when things aren’t working right, as well as we bring doctors in and watch DVD’s from Us Too and others about options with respect to ED and that kind of thing.
Where was I going? I just a mental lapse here. We have those kind of conversations. I was going somewhere else with this.
Life and death and what kind and you got some control of how you get there. Simply going to a doctor, you can find out if you’ve got hypertension. You should have some idea based on your family history. If it’s in your family DNA, chances are at some point you’re going to get it. I got it because I went through the stage, and being 63, fighting to break through the glass ceiling and wanted promotions and to earn more money and the stress that came with the job itself as well as the discrimination that came with it.
That’s why I’ve got to have a pre-op and next week go into surgery to have a third lead put to my heart to my defibrillator. This is from years of blood pressure problems, not knowing it and undetected, and then when I finally went on medication looked at my heart’s enlarged. That’s why six weeks ago when we put the new defibrillator in, they could not get the lead through my heart. Now, next week, they’ve got to go through my ribs. I use, a lot of times, my own health history in sharing.
I tell the ladies that are sitting there, I encourage them, “Talk to the men in your life and encourage your husband, your significant other, your boyfriend, your sons, your nephews, your grandsons. Talk to them about this. Encourage them to do this. They’ve got prostates. That’s the way God wired it.” I say, “Ladies, if your husbands, significant other doesn’t want to get checked, increase their life insurance Wait a minute. Wait a minute, I’m not through. I’m not through.
I pause. I said, “That way you and your new boyfriend can to the Bahamas and relax. You can finish mourning over there.” The ladies laughed. The men, of course, boo me. I said, “Why are you guys booing me? You’re the one not doing anything to stick around. You’re men just like me. You know somebody’s looking at your lady.” I’ve had some say, “Well, Bird, you got a point.” I said, “Come on, let’s be real.” I said, “These ladies will tell you they know somebody will be inviting you over to dinner if they died before you.” The ladies say, “Yes, they will because I know some are looking at my husband now.”
I said, “We guys know that we got some attract sisters in here, or women if it’s a mixed group, and that some man is looking at them. Why are you guys booing me?” I’ve had a couple of ladies call me the next day and say, “My husband called and made an appointment.” She told me, “You made him think.” I use tactics like that and everything else I learn along the way.
I’ve had some run-in with some other ministers, because some of our black preachers don’t want certain things in their churches. You know that as well as I do. I get into—I don’t want to say arguments—discussions, debates.
It’s like I tell them, “I don’t have a church. I don’t want a church. I wasn’t called to be a pastor of a church. I’m called to minister. I’m called to go sit with somebody in the hospice and hold their hand.” I actually can be quiet. I know you probably don’t think that after all this talking at you. I can actually be quiet. I am called to go tell my story. My story is that I’ve died twice on an operating table and saw what they did to bring me back. I’ve been on the other side. I know there’s a spirit in this body. I know this is just a part of the journey.
I told my doctors, my cardiologists, what they did to revive my body and what the respiratory team did. I’ve had a cardiologist tell me, “No, I didn’t do that.” I say, “Look at your notes.” They pulled it up on a computer and looked back at me and says, “No way you could have known I did that because I don’t even remember doing …” but he said, “It’s here. You just described in detail.” I said, “I was watching.”
In a lot of cases I use myself to tell the story. I have found people and brothers are more apt to listen to me because I’m not telling them what I read or what I heard. I’m telling them what I went through, what I went through with prostate cancer. “Yes, I went through depression. This support group helped me through this depression. Taking my wife with me helped her understand what I was dealing with. Then on top of that you compound a heart problem, when I can’t even take my full trash can to the street to have it emptied.” I say, “You want to talk about male ego? I’m 6-3, and that time, was 275. Come on.”
Like I say, I use myself. I don’t have a problem with it. I don’t have a problem with it. My job is to tell the story. I’m answering His call. That’s the way I feel about it. I’ve done it from the pulpit. I’ve done it on the streets of Wilmington, at Farmer’s Markets, with my other guys. A lot of these guys in my support group are the same way.
Every painful prostate cancer that you name, somebody in our group has walked in those shoes and will tell their story, even the ones where it’s come back and metastasized in their bones or lungs or throat or whatever. We just openly talk. Once a month we meet and we talk. If there’s no more than 10 of us or if it’s 50 of us, but we got 125 on the email roster. There’s some guys that don’t want to come out in public, some that don’t want to talk. We got those [inaudible 00:23:09] that will bring their wives or significant others, and they ask questions. They’re big girls because we tell ahead of time, “This is a big boy and big girl conversation now. Don’t be squeamish if somebody is talking about penises or whatever.” The women, they ask questions. They want to be supportive.
I got a brother that I’ve been working on for a year and a half to finally come to one of our support group meetings, he and his wife. At the end of the meeting his wife said, “I appreciate being here tonight. Now I know how I can help my husband and be more supportive of him.” I was never so much proud of a sister, a black woman, saying that. I fought with this guy, not fought with him, I talked to him for a year. I told him I didn’t want him to run from them when he saw them and that every conversation we had was not going to be about it.
I said, “You’re a good man. You’re finding out where …” I say, “You like single malt scotch like I do. We both are cigar smokers.” I said, “You know, I miss that.” He finally said, “Bird, when is the next meet? I’m going.” I honestly didn’t believe him, but he did. He and his wife came. My wife’s talked to his wife and shared with her, “Yeah, I’ve been with Carl.” That has helped her understand what I was dealing with. That’s the way I approach it.