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WHERE ARE WE NOW
By Gerald Perlman PhD
As noted in the introduction to this volume, the Lakota Sioux opine that when nature gives one a burden, one is also given a gift. Similarly, Zen Buddhist philosophy suggests that each crisis is an opportunity. Judeo-Christian thinking posits that God gives no one aburden he cannot handle.
more than two years ago and, for the most part, within less than a year after these men underwent some form of treatment for their prostate cancer. Each of them has moved on in his life; some more productively than others. It must be noted that, unfortunately, there are no papers from men who chose to take the watching waiting, or as one member of the group called it, the watchful "learning" path. Nor is there representation from men who have chosen alternative medicine routes to dealing with their prostate cancer.
In order to ascertain how, over time, the burden of prostate cancer and its treatment has affected those who did contribute to this volume, each of them who was willing, was asked to respond to a structured series of questions. The format follows that devised by Perlman (2003) in her inquiry into the changes experienced by drug and/or alcohol addicted men as a result of seroconverting to AIDS.
- How much time had elapsed between your diagnosis and treatment and your writing the article?
- How much time has elapsed since your wrote the article?
- What is the state of your overall health now?
- What treatment did you choose to deal with your prostate cancer?
- What side effects have you had to deal with as a result of your treatment (initially and still)?
- How are you dealing with the side effects, if any?
- How has having PCA affected your view of self (image, worth)?
- How has having PCA affected your behavior toward self (eating, sleeping, etc.)?
- How has having PCA affected your view of others (friends, relatives, partners, doctors, other healthcare givers)?
- How has having PCA affected your behavior toward others?
- How has having PCA affected your view of sex (attitude, practices, desire)?
- How has having PCA affected your life specifically as a gay man?
- Do you see gay men as really having different issues and concerns from straight men who have PCA -- and if so, what are the differences?
- Have you sought out some form of therapy and or self-help group specifically to deal with your diagnosis and treatment of PCA; if so, how beneficial has it been? Is it still ongoing?
- What particular traumas and/or experiences were influential in your shifts of attitude and/or behavior?
- Has spirituality played an important role in your dealing with PCA?
- Has your sense of priorities, values, needs changed as a result of your diagnosis and treatment of PCA; if so, how?
- In retrospect what, if anything, would you have done differently regarding your treatment of PCA?
- What would you advise a friend or loved one who has just been diagnosed with PCA?
- What are the benefits, if any, that ave derived as a result of having been diagnosed and treated for prostate cancer -- i.e., is there a silver lining?
MY ANSWERS, from LIDELL JACKSON
LIDELL JACKSON is a retired former Ballet and Broadway Dancer, and a longstanding political activist in the New York City lesbian, gay, two spirit, bisexual and transgender community. Born and raised in Memphis, Tennessee, he holds a Bachelor of Arts Degree in Applied Mathematics from Brown University, Class of ‘73.
- I was diagnosed in August 2001, and received Seed Implant Surgery on Valentine's Day, February 14, 2002.
- I wrote my article between March and June of 2003.
- Actually, my overall health is excellent! My recent PSA as of April 2004 was 2.5, and my Flomax medication helps my urination especially well.
- I chose Seed Implant Surgery.
- Initially I had burning urination. And at one point, April 2002, I was hospitalized with a bladder infection, from not having taken Flomax on a regular basis.
- The Flomax helps my urination considerably, and I take 1/4 tabs of Viagra (25 meg) to assist with my erection. At one point I was concerned about the disappearance of my ejaculate – a side-effect of the Flomax – but I seemed to have solved the problem in the following manner: since twice a day was the regular dosage, and cutting back to once a day was not effective enough, I discovered that if I took a Flomax every 18 hours, my ejaculate would return! As such, I'll take a pill at 6 pm one day, noon the next day, 6 am the day after, midnight the day after that, and then back to 6 pm. (Fortunately, I have a degree in Mathematics!)
- Being diagnosed hasn't really affected my personality – I feel just as potent and self-esteemed as I did before. I think some of this has to do with being HIV-positive, and having effectively dealt with life-threatening diseases before, so that I felt I had the -- shall we say -- "intestinal fortitude" to deal with prostate cancer as well.
- I've changed my eating habits considerably – i.e., cutting down on greasy and fatty foods, incorporating fish, seafood, steamed broccoli and green tea into my diet. I also keep two empty bottles bedside, to facilitate urination during the night.
- Being diagnosed hasn't really changed things for me, with regards to my viewpoints of others. I still second-guess my doctors – as I've done for years before this. I'm extremely open about sharing my condition with my friends – and particularly those who are Black and Latino men, since we seem as a demographic to be especially susceptible to prostate cancer.
- Having prostate cancer hasn't really affected my behavior at all, one way or the other.
- I chose Seed Implant Surgery over either external radiation, hormone therapy or any combination thereof, because I didn't want to sacrifice either my libido or my erection – and I feel as if I chose the best therapy for my life situation.
- I must say, I miss (TERRIBLY) the testosterone shots, and their "incredible" side effects – "baseball biceps," giant pecs, basically a better-built, more defined and "cut" body. Recently I triedAndrogel – which represents a smaller amount than the injections I was receiving for 4-1/2 months, which I believe contributed to my prostate cancer – and I was beginning to see the physical effects of muscle bulk on my body. But after my Radiation Oncologist noted in my blood work that there was a high level of testosterone, he cautioned meagainst it – even though my PSA from that same blood work was 2.5.
- I think the majority of us gay men have, in general, a focus on sexual performance – for some of us (myself, certainly included), even sexual prowess! So the other side effects of burning urination, incontinence, etc. were not – for me – as significant to deal with as my libido and erection – which, I am quite certain, is due to the fact that I am a gay man.
- Yes, the twice-monthly Gay Men's Prostate Cancer Survivors Support Group meeting is something which – although I don't attend every time – I must say I find incredibly helpful. Sharing of informationabout treatments, medications, dealing with side effects – these are all invaluable benefits for me. ( In fact, I just left a particularly informative and productive meeting! )
- Well, the bladder infection in 2002, which had me hospitalized for over a week, turned out to be quite the "clarion call" – changing my diet to lower my cholesterol, and taking first Lipitor, and now Tricor, and becoming considerably more disciplined about taking my Flomax regularly. ( Moral: There is nothing more ignominious than a Foley catheter to make you "wake up and smell the coffee"! )
- Yes, spirituality has played quite an important role in my healing. It has caused me to believe in – and depend upon – the strength of my intestinal fortitude to aid me considerably throughout my healing process.
- One thing has changed significantly for me – I've learned, quite effectively, to keep my stress level down, and to keep from getting upset over things. After all, stress has a deleterious effect on the system, and especially on healing. Also, as stated before, I've changed to a much healthier diet.
- I really can't think of anything I would have done differently – except pay closer attention to my medications immediately after the Seed Implant Surgery. I can't really say that I should have paid closer attention to my PSA level during the 4-1/2 months of testosterone injections, because I really wasn't aware of the link between testosterone and prostate cancer until I read about it. (Although, in retrospect, I DO wish my primary care physician had been more knowledgeable about the situation – but, "such is life.")
- I consistently tell ALL my male friends, family and neighbors – gay, bisexual and heterosexual – to have their PSA levels checked as much as possible. I'm also extremely open about sharing my experience with everyone in my community – both on an individual basis, and through my club's web-site – in the hope that my experience can be of benefit to others who find themselves in similar situations.
- Benefits? . . . Hmm – well, my diet is considerably better, and my cholesterol is lower, which means my overall health has improved as a result of having been diagnosed. Also, many of my friends and family have expressed that they now feel closer to me after my being so open and public about my affliction. Not to mention the fact that a considerable number of my male friends and colleagues, as well as my neighbors, have started paying more attention to their PSA levels because of my sharing my experience – which, in the long run, might have even saved a life or two! . . . We Can Only Hope!
Respectfully Submitted by LIDELL JACKSON, May 2004