Radical prostatectomy at 43

June 12, 2009

            Tony learned he had prostate cancer at age 43.  Though his PSA was only 1.1, his biopsy showed a Gleason score of 3+3=6.  He’d had a lifetime of prostate problems, starting with blood in his semen at age 20. 

            He underwent a radical retropubic prostatectomy at Johns Hopkins by one of the nation’s best-known urologists approximately 2 years before this interview in 2002.

A Christmas Gift?

            A week after his prostate biopsies, he says, “I just went back and my urologist said, ‘Well, I have some bad news, you have prostate cancer.’

            “It didn’t feel real at all.  I felt it was like a dream.  And immediately it was a real reality shift.  The week I waited for the biopsy, I’m going back and forth between ‘Shit, I have cancer,’ and ‘No, I can’t possibly have cancer.  I’m young.  I have this history, so it’s got to be a calcium deposit or something like that.’

            “I went in there not expecting to have cancer, but aware that it was a real possibility, so I was a little nervous.  When he said I had prostate cancer it was like the life force just went out of me, starting from the top of my head and just all the way down my body and right out of my toes.  It was like a shot of electricity just going.  It wasn’t quite as sharp as electricity would be – more like having the whole chi or however you describe your life force just get sucked right out of my big toe, boom.”

            “It took me about three days to kind of let the dust settle before I could start to function again.  I wasn’t lying in bed crying or anything, but I was dazed, shell shocked, not really sleeping. I’m sure I was crying at some time, but I wasn’t overwhelmed with anguish and grief.  In a way, maybe I was conserving some energy because I knew what I had to put out to get through this.  It was like when an animal is wounded, they retreat and heal and then move on.  I think that was my instinctive, intuitive reaction.

            I knew that this was going to be a tough decision with an uncertain outcome, and it had implications for really the long term elements of my life.  I really wasn’t worried about the short term.  I figured I could probably do nothing and I wouldn’t die from this for maybe five or ten years, so I wasn’t worried about dying immediately.  But I did think about my funeral and those kinds of issues.  I think it was a metaphor that helped me reflect about the meaning of my life, which I was searching for at the time. 

“In my personal life, I wasn’t really in a great fulfilled space.  I was adrift, passionless, bored with my job. I felt stuck and trapped.  I was living in a small town, and I had pretty much worn it out.  The social scene was not stimulating enough. I was in an arid space. I had a better life than most people have, but it wasn’t working for me.  I wanted more, so I had been thinking a lot about making a change and maybe relocating.   I was kind of seeking a new path with meaning.  I just didn’t think it wasn’t going to come in the form of a cancer diagnosis.  It was not what I had in mind.  I was thinking, maybe a classified ad, or something — not this.”

 “This was a turning point for me personally — diagnosed with prostate cancer 17 days before Christmas.  That sucks.  That’s rotten timing.  It’s never good, but how am I going to be joyful through the holiday season?  How am I going to appreciate the meaning of this season if my mind and consciousness and spirit are clouded by this personal crisis? 

“And it just came to me… I’m not a big believer in God.  I was raised Roman Catholic and I went to Catholic school… I was a very polite kid, but I had fallen by the wayside. I had lost my faith in the institution, but I always had a sense of the cosmic, the spiritual.  I had a gut connection, but it was not an active part of my life. 

“Well, lo and behold, comes this diagnosis, and in the Christmas season.  It was a great period of reflection about the things that really meant a lot to me, about my family — maybe I didn’t appreciate some of them so much for knowing them so well.  It’s not that I ever stopped loving any of my family, but there’s friction amongst loved ones.  I started reflecting about that and what a waste of time that was, and I started to examine all of these positive blessings that I’ve had in my life, my entire life.  Many times when they were absolutely richly undeserved, they still came to me in one form or another.  And I started appreciating those elements more, and I started to realize that this cancer diagnosis coming at Christmas was most beneficent because there’s no other time when a life crisis could have triggered more intense reflection for me. 

“All the meaningful stuff was there — good will towards men, the usual Pavlovian cues that the Christmas carols create, jarring our memories about good stuff — and it was good for me.  It really solidified a lot.  I had been living a drifting, dispassionate, unfulfilled existence before Christmas, dreading the holidays.  Then along with the holidays came a cancer diagnosis, and it all started to flip.  It didn’t any longer seem like a tragedy. 

“I was very concerned, but I was starting to see my life in a different way — a good way.  Things were becoming more meaningful, more dear.  The cancer was energizing me.  I thought God, get me through this, whoever you are, whatever you are, whatever you are doing, a moment of your undivided attention here.  Help me out here, get me through this, and help me find a way to make something good come out of this disease.  Yes, for me personally, but I just wanted to be an instrument, if you will, for effecting some kind of positive change, having some sort of a positive effect in this disease. 

“This disease is too much of a shadow.  It’s so widespread — maybe because most of the men being diagnosed with this are much older, of a different generation, where they’re not going to be so vocal about something so personal and intimate.  But I thought well, I don’t really give a shit.  I don’t mind.  What other way are we going to be able to break this into the light than actually start bringing it out?  You have to open it up, and I thought, I can do this.  Somehow or another, there’s going to be a way to do this. 

“I thought about perhaps coming to Baltimore, maybe finding something through Hopkins.  I didn’t know what to do.  I had no idea but I wanted to do something.  So, I just educated myself and I just kept learning and learning as much as I could about this disease every day. I was subscribing to newsgroups, spending hours on the Internet every single day, getting books and just devouring as much information as I could so that I could speak knowledgeably if I had to and understand what was going on.  So, something larger happened for me. 

“That was great. I kind of slingshotted out of the Christmas season a little bit more upbeat and still nervous — is Dr. W going to take me?  What the hell’s going to happen?  And it was scary.  But I felt pretty calm for the most part.”

Two years after: Thoughts on intimacy

            After his radical prostatectomy, Tony remained largely impotent.  He began to be involved with prostate cancer advocacy groups, and at a national meeting he sat on a panel discussing intimacy in prostate cancer.  He says, “It was hilarious.  We had a blast doing it and it was very well received. A lot of the panels and workshops were medically oriented.  This was the human side of it, and we had a few laughs, shed a few tears.  We kind of counter balanced all the intensive parts of the meeting and brought it down to where the rubber meets the road. 

“It was particularly important to me, having gone through this radical surgery and being a single guy.  Before the operation, I’m thinking great, they’re going to eviscerate me.   I’ll probably never get an erection again, and who the hell is going to want a capon instead of a rooster, you know?  That’s a drag.            

            “I was concerned about this, but it actually hasn’t been such a big deal. Even after over two years my erections are still not there without Viagra — God bless the little blue pill. I think a large part of the recovery is the intimacy of connecting with another human being. I can only take matters into my own hands so far, so to speak — purely for therapeutic reasons, you know.

            “In terms of understanding the real nature of physical intimacy, it’s more about the connection than the erection.  It’s how we connect with our partner.  So recovering erectile function was actually not that big of a deal to me.  It’s a little strange to find that I can have intense orgasms without an erection or ejaculation — strange because it’s a different experience from a lifetime of ‘normal’ functioning.  Mechanically speaking, not having full erectile function requires some creativity in terms of complimentary skills, so I think sex became more interesting.

            I think it sensitized me to a more complete world of physical intimacy.  I helped me focus my energies to a different level.  Sex is important to me but it’s not the end of the world, and I don’t feel like anything less of a man.  In fact, I probably feel like more of a man, because I’m dealing with it in a way that is not disabling me.  Sex is just as pleasurable now, in some ways maybe even more than it was before.  But it’s not like I’m in the procreative phase.  Sex as procreation, that whole thing went out the window.  I’d need a turkey baster for that.  So now sex is not exactly pure unbridled hedonism, but it is no longer about procreation.  Now it’s about connecting, feeling that inner fulfillment.

            “ A common ‘guy’ way of thinking it to assume that without an erect penis, sexual intimacy isn’t possible. True, there are certain things one can’t do, so you have to get creative about it.  Part of it is paying attention to your partner.  There’s an awful lot of satisfaction to be derived from that.  ‘My dick don’t work so I can’t be there’ is a very guy way to think.  Most women don’t really think that way at all about it.  In fact, I have been intimate with several women since this operation.  It’s not a problem.  It doesn’t really matter.”

            I mentioned to Tony that I’d spoken the previous day with a woman who was angry about intimacy.  Her anger wasn’t because her husband couldn’t get an erect penis, but because he’d withdrawn from all physical intimacy claiming that he was now damaged goods, despite their many years together.

            “I can understand the urge to withdraw, but that’s not how it is for me.  A lot of men that come down with this disease have been married for many years.  Not being in that space, I felt like I didn’t want to withdraw.   I like women a lot.  Women are just much more hip to the trip of being nurturing and understanding and accepting.  I think we should give them that credit, and guys in long term relationships could probably find great acceptance even without a fully functioning dick.

            “In my own situation I have to make my status known at some point.  Very interesting icebreaker, you know.  Well, I’ve got this like ED problem because I was eviscerated two years ago…  I’ve found that it works best for me when I’m open and honest about this experience, because I don’t get in any trouble that way.  Most people listen with a compassionate ear.  How else are people going to be educated about it again until we open up about it? I have no problem talking about these kinds of issues, and in a way, women respond quite favorably.

“Believe me, I’m thinking, if anything can crimp a bachelor’s style, it’s a radical prostatectomy. I’m thinking, well, there goes trolling for trollops, or whatever – not that this was a particularly avid sport of mine.  But men like their options, and it was a concern to me.  Turns out it’s not the end of the world.  I think that women want more than a hard dick.  Women want to be connected, that’s really what they want.

            “If the question is, can I still have sex that’s great for me and great for my partner, the answer is ‘You bet!  Off the charts!  Absolutely, no question about it!’  Oddly enough, I have probably had some of the best sex of my life without an erection, no doubt about it.  I kind of am tickled by that because it’s so counter-intuitive.  It’s not like ‘Mr. Happy is not smiling today so what are we going to do?  Oh, down in the dumps.’  No, it’s like there is every bit as much capacity for intense pleasure and enjoyment, just missing a couple of things. 

“I suppose it’s how you market it, too. I’ve had this operation, so maybe it makes me appear more harmless in a way.  You know, Mr. Johnson is napping…  How bad can he be, he seems like a nice guy? And no messy spills, which is always good for the neat freaks out there. I think some women are more moved by a guy being able to talk about it. 

“This is the classic ‘Men are from Mars, Women are from Venus’ type of thing.  Men don’t want to talk about it.  But talking about brings it out in the open and helps resolve it.  Women like to talk — they like to talk about stuff that’s meaningful, especially when it comes to personal intimacy.  I think that it’s a much better strategy to get it out and unburden oneself of the frustrating aspects and find that there is this great connection and understanding with your partner. 

“I like women.  I think women are wonderful and compassionate, and they have a lot of qualities and instincts that we men don’t get.  But you know, withdrawing is counter-productive because women respond so much better to staying open and honest, and I think that may be where a lot of men’s problems come in.

         “This is hard for men to hear.  You just have to break through cement to get in there, but I believe in the power of honesty.

            We’re so phallocentric in our society that it’s hard for men to understand that they are not their erections, or that the erection might not the primary sexual interest of a woman.  It might be fun if men did not develop the ability to have erections until later in life, perhaps after they’d been certified or had their tickets punched by a number of women who could attest to their qualities as sensitive lovers? 

            Men depend on and define themselves by their erections. “There’s a lot of obsessive energy that men place on the phallus,” says Tony. “It’s a symbol of our masculinity, our prowess, our ego.  But if a man has his head full of snakes about his self-worth being wrapped up in an erection, there are other issues to address.  It’s not about the erection.  Sex can be just fine without erections, absolutely.  I am absolutely a witness to this, and very recently (laughing).  It’s not the same, but it’s still fun, still pleasurable.  It’s a mistake for a man to withdraw because he can’t present an erect penis – it’s counterproductive, not fair to your partner, and not good for a man’s psyche.  The real fulfillment lies beyond what a man might have been able to accomplish with his penis – so dive on in, there’s more here than you knew.

            “I decided not to focus so much on what I’d lost, fearing that I’d never get back up on the horse.  If I really thought that because I don’t get erections like I used to I’m of no value, my whole life would unravel.  If I really put all my self worth on one bodily function, that wouldn’t be the reality.  It would be just a story I’d made up, just my mind deluding itself that this is what defines a man – and it’s not.

            “What defines a man is not the self-centered penile-focused perspective of power and dominance.  It’s appreciating a more holistic viewpoint, it’s understanding the importance of relationships.  It’s not about who’s got the biggest swinging dick or who’s the biggest stud in the henhouse.  It’s about being open and honest and communicating and connecting with someone you love.  If you have that view, then inability to have an erection isn’t the end of the world.  I can function sexually just fine – I just can’t get erections the way I used to.  I am still capable of toe-curling orgasms.  I don’t know why, but they seem more intense now.  And I can deliver the mail for my partner.  I put more of a premium now on pleasing a lover.

            “It’s true that if I’d adopted the idea that ‘sex’ consisted solely of intercourse in the missionary position, I might be telling myself that I can no longer have ‘sex.’  But I’m 45, pretty much part of a generation where anything goes.  My formative years were in a pretty permissive sexual environment, and I have a lot more experience with partners and techniques than many of the older men I know with prostate cancer.  I’ve probably been much more experimental.

            “How does someone raised in a repressive atmosphere start reading the Kama Sutra, buying sex toys, giving the wife a massage?  It’s a foreign language for many men.  Yet there’s tremendous pleasure to be had in offering oneself, in bringing pleasure and satisfaction to a partner about whom you care.  It’s important, and seems pretty obvious.

            “Many people have no experience with adventure or exploration – testimony to pretty effective mind control by the people who were spinning the sex trip on these cats.  ‘God knows we can’t do that – that’s despicable, or deplorable, or depraved.’  These people miss the best parts.

            “I haven’t missed much.  I have had plenty of fun over the years.  At this point, it’s taken a shift.  Perhaps because I’m more experienced in sexuality than some in older generations, it’s been easier for me.

            “Women are coming out of the woodwork for me.  It’s almost freaking me out.  I admit that I haven’t yet been with a woman who lost interest and left when she found out about my surgery.  But what could I do?  I wouldn’t blame her for having whatever reaction she has to what’s so.

I would not change this experience for anything

            “I’m not scared of recurrence.  I’ll cross that bridge when I come to it.  I take greater risks every day – in my bike riding, for example.

            “I worry a little about guys who come out of treatment feeling great and have the cocky attitude that their disease is gone.  It cracks me up with laparoscopic radical prostatectomies.  That may indeed be the wave of the future, but I hear people say ‘Everyone should have laparoscopy.  I was out of the hospital in two days, lifting bales of hay and everything is fine.’  It’s not about feeling fine after treatment, it’s about whether the treatment effectively dealt with the disease.  If you want to feel fine and not be inconvenienced, just don’t be treated.  The guys who are focused on getting back to work in four days may be focusing on the wrong criteria.”

            “If I were 42 again and got to decide whether to have prostate cancer or not, I would never change it. I would not change this experience for anything. I’m serious.  It sounds totally ridiculous and absurd.

            “We live in an interesting world, a busy world.  There are so many distractions.  Whether it’s sex, drugs, rock and roll, or the distractions of our work life, we get so knocked off the real path.  We lose sight of the things that are of real value, that go beyond a sinking stock portfolio. 

“Those things are important relatively, but they’re not ultimately important.  They are intangible instruments that–as we see after the last year in the stock market– could disappear.  How many easy come, easy go multi millionaires were there?  It’s not real. I’m not minimizing financial security, but for those who are open to it the cancer experience is a life changing experience.  It’s a way to reexamine what is most important, and reprioritize — learn to really understand the value of what we ultimately have. 

“That has worked for me very, very well.  I went from this life I was not happy with to something that I couldn’t be any more happy about.  I couldn’t possibly be any happier than I am today, because I feel very good, not worried about cancer. I’m having a good life, I get to go out and eat every once in a while, I have nice friends, people I care about. I have a job that I love and take seriously, and that’s always presenting new and exciting challenges, giving me new purpose.  I’ve never been better.

            “It’s amazing, you know?  It’s brought my family and me closer together.  It’s wrapped up a lot of things in my life that needed wrapping up.  It’s really the most amazing and wonderful life.

            “You asked whether my working to foster prostate cancer prevention is going to deprive people of an important experience.  (Laughing) That’s OK.  I don’t necessarily recommend it as a way to go.  Maybe they’ll have the experience in some other way.  There are better ways of doing it.  One would be just to wise up and realize what’s important.  That’s the easy way, but I’m kind of a knucklehead. I have to learn things the hard way sometimes.  Maybe I was in a deep sleep and this as kind of a wake up call.” 

            “Some have suggested that it’s androgen blockade and the absence of testosterone that makes many men more satisfied with their lives after an encounter with prostate cancer.  I disagree with that.  I’m still a raging bag of testosterone, no question about that. I’m surprised it’s not bubbling out of my ears as we speak. Cancer brought me an attitude adjustment because it’s really the first time I ever really addressed my mortality.  I thought about my funeral seriously.  I thought about a living will.  I realized that I’d been thinking I was in the middle of my life, and that it might suddenly end early.  It helped me make a conscious decision to appreciate what was there.  I chose not to worry about what wasn’t there yet, or when the grim reaper might arrive. 

            “He wasn’t quite at my doorstep. I had time to hold him off.  The attitude adjustment came from understanding and focusing on important things, not getting stuck crying, ‘woe is me, I have cancer of the prostate, woe is me.’  I struggled with erectile dysfunction for a couple of years, but I’m constantly improving, so I focus on that.  A year from now, I’m probably going to be fully recovered.  That’s the direction from most men.  My experience is that I’m lucky enough to have been set apart in that way. I don’t need a big swinging dick to be me.  I have never been happier, never.

            I can say that without reservation.  Would I go back in time and not have this experience…  Well, I’d rather not know I have a disease that could kill me, but I would never have wanted to miss this kind of ride at the hand of God’s will.  I don’t know if that’s exactly how I would phrase it, but I think that that works.”

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Metastatic Prostate Cancer: Robert and Caren

June 7, 2009

             I interviewed Robert and Caren six years ago in Cincinnati.    Robert was the creator of the Phoenix5 website, one of the best mixes of personal information and hard scientific facts.  The website is still on line, though Robert no longer maintains it.

            I use present tense because in re-reading the interview Robert and Caren are once again there with me.

            Robert speaks of his changing perspective on physical decline.  In a PBS special on men and women facing death, the lines beyond which these people were not willing to stay alive kept shifting as they approached the lines.  Caren remembers a man with Lou Gehrig’s disease who at first didn’t want to live if he couldn’t walk, and then if he couldn’t feed himself, and then if he couldn’t breathe on his own.  His line kept being pushed back further and further.

            Caren reminds Robert that he had once been pretty adamant about no clinical trials, no chemo, and no radiation.  He says, “It may have crossed my mind way back when that I would just as soon kill myself rather than go through all that.  I may not have had an alternative, but I didn’t want to do that.  But I found as I was moving forward that it changed my perspective on it each step of the way.  The longer I lived with the condition, the more it became, OK, I can do a little bit more.

            “I learned that my measure of myself as a man was my ability to get up one more time.   After so many of these blows, I realized that all they did was just screw me up.  They didn’t kill me.  It finally became a little mantra for me that when I was in the middle of this, I knew I would come out of it.  I would just sort of float along with it, going ‘it’ll stop pretty soon.’”

            Caren says, “I love Robert’s statement that part of the definition of male identity is the ability to get back up again.  It’s one of the things I just adore about him.  I saw him go through all these agonizing processes and he always came out of it, and it was amazing.  I’ve struggled with chronic depression, so to get back up again is not always easy for me.  Ten years ago it was pretty rough to get back up again without some serious help from doctors and drugs.  That Robert can do this without help, just by his own internal strength, is amazing to me.”

            “I’ve been knocked down and gotten up again so many times that I’ve discovered that I can actually count on being able to get up,” says Robert.  “In the middle of the night, I know there will be a dawn.  It may take a while, but it’s inevitable.  I feel total assurance that no matter how bad it gets, the decision to return is mine.  That’s really put it under my control.”

            “I began to write about my condition as though I were climbing Everest,” he says.  “These guys will take a step, and then have to wait ten seconds to catch their breath, and then they’ll take another step.  It gets harder and harder and harder.  But that’s not a reason for going back – it’s the reason for going forward.  If Everest was really that easy, why do it?”

            Caren tells how they’ve adapted their lives to keep doing things that otherwise couldn’t be done – standing to wash a single dish at a time, for example, rather than requiring that all the dishes be done at once.

            “It’s adapting,” says Robert.  “For a while I thought these were concessions. But this is adapting.  This is meeting an obstacle and getting by it, it’s not a concession.  A lot of people with physical conditions go through the same thing, whether they lose their sight or their hearing, or become amputees.  They adapt.  Some can’t adapt.  It wipes them out.  They choose not to live because they can’t do something they once did.”

            Robert describes the joy of acquiring a walker when walking became difficult, and of unbending enough to use the motorized scooters available in some stores.  “I adapted.  This thing gave me ability, and I just learned how to do it.  I would once have had a horrible feeling of, my God, I’m crippled.  That’s the concession attitude.”

            Robert and Caren talk a great deal about sexuality, intimacy, love and communication.  For Robert, the loss of his sexual feelings and ability was at first the equivalent of losing his identity as a man.  Part of allowed him to come to terms with this loss was Caren’s acceptance.

            “At first,” says Caren, “when Robert’s sexual inability manifested, it hurt and it was difficult.  What balanced it was the incredible intimacy that we had with each other.  We could talk to each other about anything and everything.  That intimacy, the ability to be who we really are in the presence of our partner, without disguise, is an immense personal satisfaction.  If Robert were non-communicative, if he kept everything to himself and on top of that there was no sex, the relationship just wouldn’t have happened.  I need something, and I just find what he has to offer to me emotionally is so immensely satisfying that it makes it OK.”

            Robert never took himself out of the relationship because he saw himself as broken or dysfunctional, she says.  “Oh, there were moments, but never sustained,”  Caren says, “You get into that thing about privacy versus secrecy.  You never kept your feelings a secret from me, even though you sometimes needed a day or two of privacy to mull it over before you could talk about it or put it into the right words.  You never kept it a secret how you were feeling.”

            “I mentioned in my journal one night when she curled against me and reached over and touched my cheek as I was facing away from her.  I broke down because I wasn’t able to respond in this manly way, but her gesture wasn’t sexual, it was just affectionate.  She stayed there for me, and I just cried.  She was always so like, OK, honey, you want to do it that way or whatever, it’s fine.  She gave me confidence to be myself, that whatever I rebuilt was going to be OK with her.  This is a tremendous vote of confidence.  I couldn’t have done it without her.”

            “Early on,” she laughs, “I did have to remind you, you know, don’t forget, you can still hold my hand and we can still cuddle.”

            She’s always been inviting, Robert says, rather than threatening or demanding or belittling.

            “It also helps,” Caren says, “that Robert gives me the space, too, to say some of what I’m feeling that could potentially be hurtful for him to hear.  I can say, ‘Boy, you know, sometimes when we sit close, I start to get aroused, and that makes me sad.’  I appreciate that I can say that, that it’s safe, that I don’t have to take care of his feelings because I know he can deal with it.”

            “Yeah,” says Robert. “Imagine a guy that’s a paraplegic.  He’s in a wheelchair, can’t use his legs.  His companion says, ‘I really miss our going out dancing.’  One can well imagine a Hollywood script in which that hurts him badly and an argument ensues, and we have a moment of drama.  But imagine the scenario that’s not dramatic, where he just says, ‘Yeah, I know, Honey.  I miss it too.’”

            “We’re not spring chickens,” says Robert.  He’s 64, and Caren is 47. “We both learned from an early age to communicate, and that’s part of the synergy between us.  We didn’t just learn this in the moment.  I have the ability to communicate that way, but if I’m not with someone that can give it back, it doesn’t do any good.  We had the basic elements of relationship to start with.  I pity couples who say, ‘He won’t talk to me,’ or ‘She won’t talk to me.’  This is going to stress you out more than bankruptcy, pregnancy, death in the family, losing your job, losing your home, terrorism attack, or anything else that comes into your life.  You have to deal with who you are as a partnership, and sometimes you don’t really know what you have until it’s put to the test.  I didn’t know until this came to the test, and that’s when I realized, My God, I’m really, really lucky.”

            “I can’t give a recipe to others, other than raw, brutal honesty and trust,” Robert says. “I mean trust, the ability to disclose your deepest, darkest most secret thing that you know will kill you, will make the world laugh at you, will send you to jail, and then the heavens will open and you’ll be fried by a wrathful God.”

            “It means never abusing that trust, ever, not even for a second,” adds Caren. “ We’ve never done that with each other, whether it’s use something against each other in a disagreement, or tell someone something that was personal.”

            In response to the observation that each of them seemed unfailingly kind to the other, Robert says, “I would use the word considerate.  We don’t attack each other, not at all, ever.

            “We see other people do things that we think are just incredibly rude to do in a relationship, let alone a romantic relationship,” adds Caren.

            “It’s not only just rude, it’s disrespectful,” says Robert.  “You’re with this person that you love, and the elements of love include respect, trust, and encouragement.  The measure, to me, is how well she’s doing.  Her happiness is a real key to me.  Why would I want to tear her down, or control her, or change her?”

            Speaking of past relationships, and how this one is different, Caren says, “We both had that ability in us, but you need a partner to exercise it.  I love that line from As Good As It Gets, when Jack Nicholson says, ‘You make me want to be a better man.’”

            “That’s what she is to me,” says Robert.

            “And vice versa,” says Caren.

 

      At the end of the interview, Robert wants to touch on one more thing.  “I’m not part of any structured established religious system. I’ve got my own custom made system.  Here I’m at the limits of language and have to fall back upon metaphor.  There’s one part of me that really looks forward of dying — not that I would kill myself or accelerate the process but damn, I really do want to find out.  I happen to think there’s nothing to find out — let’s just leave it at that.  When I was talking about Frankel, I said that your purpose in life is what you create it or make it.  So, I think, is death, it’s what you make it, whether or not you have the courage to make it.  Sure ain’t easy, but neither was boot camp.  This is another challenge like boot camp.

             “You asked me way back when about what did I learn.  I don’t know if I said it this way, but it’s really unimportant what I learned.  What is important is to learn, that’s what’s important.  And to make it yours, to have the courage to stare into that black void and say well, that’s where the answer is — and go there.  And, when you do, guess what?  It’s not a black void, it’s really quite magical.  I happen to believe we bring our own light into these things.

            “I reiterate every time I can that I couldn’t have done this without Caren. I’d be dead now. If I had been diagnosed and gone off making all the right decisions, I’d be dead now. I actually think that my attitude is what’s kept me alive. 

            “The last time I saw my original urologist, two and a half years ago, I said, ‘I’m already beating the odds.’ She said, ‘Yes, you are.’ I kind of like that, I think it’s kind of nifty. 

            “I’ve said in a number of essays, I don’t like the idea of scratching, clawing, begging, pleading, wishing or hoping for another few days, another few months or another year.  On the advanced list recently, somebody was saying, ‘Well, you got to always keep up your hope because there might be a cure around the corner.’

            “It’s like saying, ‘Oh, if only I could get a cure I’d feel so much better.’ I refuse to base my hope for the future on a cure.  Hope has to be based on what you have and what you want to do.  Waiting for a cure to make you feel better is like waiting to win the lottery so you’ll feel better. It negates your own abilities and resources.  It’s like saying I can’t have a good day and a good life unless I’m cured.

            “Tying your happiness up in hopes of some medical discovery is just doing it all backwards.  I don’t expect a cure.  You know what would be really wonderful?  It would be wonderful to have a cure if they come up with something that would allow me the best of all worlds.  I get to keep all my friends, I get to keep my Caren, I get to keep everything I learned, and then they give me a cure.” 

            I interviewed Robert and Caren on February 11, 2003.  By June 10, 2003, he was in an inpatient hospice bed, neither eating nor drinking, still recognizing Caren and telling her he loved her.  Robert died June 15, 2003, four months after the interview.

Introduction

June 7, 2009

I’m Mike Plumer. Anesthesiologist. Age 64. Diagnosed with prostate cancer at age 55, treated with “seeds” and external beam radiation. I found that men talked about the facts of their cancer, but seldom the feelings or the experience itself. Shortly after my own treatment, I spent two years interviewing 100 people who had dealt with prostate cancer in their lives. This blog consists of the edited “nuggets” from 2000 pages of single-space interview transcripts — shining bits that say something important about the experience of being human and dealing with a life-changing disease. Names and biographical details are often disguised, but the words are those of the interviewees.