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SURVIVING YET ANOTHER CHALLENGE
By >Lidell Jackson
SURVIVING PROSTATE CANCER:
A few guys have asked me about my experiences in surviving prostate cancer, and I've not only sent them the article that I've written expressly for the Gay And Lesbian Journal Of Psychotherapy -- but also referred them to the twice monthly Gay Men's Prostate Cancer Support Group that I often attend on West 15th Street in Manhattan . . .
If you're interested in any or all of the above, again, contact me.
Written expressly for The Gay And Lesbian Journal Of Psychotheraphy
Keywords and Phrases:
- Prostate Cancer
- Prostate Cancer and Testosterone
- HIV Seroconversion
- Prostate Cancer and HIV-Positivity
- Challenging Doctors
- Gay Men Of Color and Health
- Prostate Cancer as an African American Gay Man
- Prostate Cancer as a Sexually-Active Gay Man
- Prostate Cancer and Erection
- Prostate Cancer and Libido<
Being a physically fit and sexually-active African-American gay man of mature years -- and having survived more than a decade of being HIV-positive -- I now found myself faced with another significant and completely new challenge to my health, Prostate Cancer. My choice of cure, and my road to recovery, were both strongly influenced by my specific set of physical characteristics, personal history, and strength of resolve. Extremely satisfied with my choice of treatment, I am now quite healthy, and welcome the opportunity to tell my story in the hope that it will help others – especially Gay Men Of Color – who find themselves in a similar situation. and having survived more than a decade of being HIV-positive -- I now found myself faced with another significant and completely new challenge to my health, Prostate Cancer. My choice of cure, and my road to recovery, were both strongly influenced by my specific set of physical characteristics, personal history, and strength of resolve. Extremely satisfied with my choice of treatment, I am now quite healthy, and welcome the opportunity to tell my story in the hope that it will help others – especially Gay Men Of Color – who find themselves in a similar situation.
As a former Ballet and Broadway Dancer – and a pretty good Wrestler in turn – I've always prided myself on being both physically healthy . . . and extremely in touch with my physicality. I'm also a longstanding political activist in the LGTSBT (lesbian/gay/two spirit/bisexual/transgender) community . . . and also an HIV-positive, sex-positive activist who runs my own safe sex club for Men Of Color "And Their Friends." This represents more than 30 years of an adult life in which I've prided myself on being physically fit. Even as my community has weathered the horrors of an AIDS pandemic – and so many of us have seen so many of our strong, healthy gay male friends and lovers get sick and die – I've still maintained an identity of superior physical health.
During my dance years I discovered homeopathy – the science of treating diseases by administering minute doses of remedies that, in healthy people, produce symptoms of the diseases being treated, thereby causing the body's immune system to actively engage in healing itself. I particularly enjoyed the idea that my discipline and adherence to a strong physical regimen made my body an active, important partner with my homeopath in continuing to keep myself healthy.
Of course, all of this was brought into question when I seroconverted in 1991. For over eight years I was faced with the dilemma of how my reliance upon homeopathy would keep me from progressing to a situation where I developed AIDS. I worked diligently with my homeopath to incorporate blood, colloidal, anti-viral and immune-building natural remedies into my already "hyper-disciplined" pill-taking regimen.
Alternative Healing Gives Way
Then, Summer of ‘99 presented me with my "Lazarus Moment" (a clever and particularly apt Biblical reference). After coordinating and supervising an overwhelmingly stressful camping weekend involving 60-plus gay men, a staff, a caterer, daily chartered buses and vans (I swear, that weekend cured me forever of enjoying being called "Daddy"!), I suddenly developed an especially harrowing case of Spinal Meningitis – paralysis of my spine!
This resulted in three weeks of intense hospitalization, four weeks of very confining home convalescence with hourly injections of Rocephin through a Hickman catheter in my chest, and a regimen of daily injections for a subsequent seven months to cure lingering cases of osteomyelitis and diskitis in the lumbar region of my spine.
Hooked to the catheter, I felt tethered to my bed – immobile and completely useless. This was both physically and emotionally debilitating for me (not to mention dehumanizing). After more than 20 years of a exciting physical career and life, suddenly I was an invalid! Now, of course, I fully believed that I was going to recover – if for no other reason, because I simply had the will, the resolve, to recover successfully.
And I did – thanks to my personal "cocktail" of Epivir, Zerit and Viramune, with an Amoxycillin chaser to check the re-emergence of the osteomyelitis. It was during this process that I took on the practice of questioning – and at times, countering – the opinions of my various doctors. My numerous years of homeopathy had taught me to be actively involved, and educated about, my own sense of healing – so I wasn't about to relent now! As a matter of fact, it was here where the Internet became my friend – providing me with invaluable information on the various medications, their side effects, their combinations, etc.
However, this episode did serve to place me on a retroviral regimen which I continue to practice to this day. And now, in Summer 2003, I can look at T-cells in the upper 700s and an undetectable viral load.
Admittedly, I regret that homeopathy wasn't more effective in fighting off the spread of the virus. However, I'm glad that at least I tried it. It was important for me to involve myself in what I felt was a natural and "pro-active" way of trying to heal myself, rather than just relying on manufactured drugs to do the job. Somehow it seemed as if HIV had become a challenge to my system . . . and I had chosen to meet that challenge the best way I knew how – even if I did have to finally capitulate to HIV medications to see me out of the darkness.
Another Challenge Appears
So, imagine my surprise at being diagnosed in August 2001 with Prostate Cancer. Now, I believe this developed as the result of a series of testosterone injections I received from my doctor between April and August of that year. By the time my doctor and I checked my PSA level in August – admittedly, at my own request – it was a whopping 20.5, with a Gleason of7!
Okay, on to my urologist – for an ultrasound, anal probe and biopsy – to discover that, yes, I had prostate cancer. That said, I suddenly found myself in the unenviable position of having to surmount yet another obstacle on the road to perfect health. Admittedly, hearing the word "cancer" didn't seem to frighten me . . . after all, I'd been through the horrors concomitant with HIV, so prostate cancer seemed like a "walk-in-the-park" in comparison.
But I do admit one thing – my previous experience with various doctors around my "HIV saga" had taught me to take considerable time in educating myself about what prostate cancer is, how it develops, and how to treat it. In my humble opinion, had I been this diligent during the months in which I was receiving those lovely testosterone shots in my butt every fortnight, I might have had the wherewithal to "counsel" my doctor to monitor my PSA level more closely! [Of course I no longer receive the shots – but how I miss those "baseball biceps"!]
Surgery over Alternative Healing
My first inclination was to treat this new prostate cancer homeopathically – Saw Palmetto, Lycopene, Squalene, etc. However, when my doctor informed me that I should be concerned that the cancer might spread outside the prostate, and the first place it might spread to was my back, I knew it was time for more drastic measures. After all, I had already survived that dreadful summer of ‘99 – and I was not about to chance having anything happen to my back like that again! [ I now truly believe in that old adage, "whatever doesn't kill you makes you stronger"!]
So, as I was now going into my 11th year of seroconversion, in February 2002 I elected to have seed implant surgery – as my preferred treatment for curing – over radiation therapy, hormone therapy or radical prostatectomy, because as a sex club owner and sex-positive – and extremely sexually-active – gay man, I simply couldn't afford to sacrifice either my libido or my erection – they were (and still are) both vitally important to me.
As I was now facing the onslaught of yet another (albeit not as frightening) disease, my original intention to address the situation homeopathically – as I had done after seroconverting to HIV a decade earlier – clearly evaporated. [ Of course, I saw where THAT decision had left me – with spinal meningitis and smack-dab in the middle of a "cocktail!" However, I contend to this day that I would not have recovered as strongly, as healthily, and as relatively quickly as I did had I not maintained a positive health picture with homeopathy as my sole source of medical treatment since the early 1980's -- with, of course, occasional shots of penicillin here-and-there to cure gonorrhea and syphilis. I mean, after all, I was a sexually active gay man in the ‘70s! – still am, for that matter, just now in a new Millennium! ]
Anyway, the Valentine's Day (how appropriate) Seed Implant Surgery went especially well, with no problems at all. In fact, I was able to go in at dawn [?!] and leave by 4 pm (unescorted, thank you!) that same day [ of course, however, not until having to throw a veritable "hissy fit" after waiting for more than an hour for a changing shift of nurses before I could practically beg one to "dislodge" the Foley Catheter from "My Buddy" — hmph, the ignominy of it all! ]
Dealing with the Side Effect
A year later I happily find myself back to the picture of perfect health! My latest PSA was 4.5, and both libido and erection are in, shall we say, "tip-top shape." Okay, yes, there's still intermittent burning during urination. I've become almost addicted to Flomax – especially after having missed a series of doses and having landed in the hospital again with a bladder infection that came hairs close to a renal infection!. I also have intermittent bouts with this same infection, involving having to take twice-daily doses of Macrobid at times.
And okay, yes, my ejaculate nowadays is practically non-existent – literally, "dribbles" of cum! Now, that was never really terribly important to me anyway – I always just thought of it as the sort-of "icing on the cake" (gawd, what a terrible pun!). To me the orgasm itself was always the thing. But I did use to think of it as quite "manly" to watch my eruption of volumes of juice! [Well, so much for that.]
Next Step, Support
Still, the orgasm has returned intact – after a slight detour. Shortly after my diagnosis I was introduced by a dear friend suffering with the same disease to a Prostate Cancer Support Group. I lasted barely two meetings! My being openly, outwardly (some might say, even "frighteningly") gay was quite daunting to the predominantly heterosexual men in the room – and, who knows, may have even caused some of the other gay men to look askance (it often does – I'm used to that). Certainly my open admission to being a sex club owner, and my avid enthusiasm for sexual freedom of expression – being both sex-positive and sexually active – left a somewhat heavy – certainly palpable – discomfort in a room where most men were more concerned about incontinence than about potency or performance.
But then, the Gay Prostate Cancer Support Group surfaced – hallelujah! It was here where I was able to embrace – and more important, discuss – this sexual freedom openly, as well as to compare notes on desire, potency, performance, orgasm, ejaculate ... and I stop there, because it was in this group where I discovered the concept of the "missed moment.But then, the Gay Prostate Cancer Support Group surfaced – hallelujah! It was here where I was able to embrace – and more important, discuss – this sexual freedom openly, as well as to compare notes on desire, potency, performance, orgasm, ejaculate ... and I stop there, because it was in this group where I discovered the concept of the "missed moment.
I knew it was happening to me – that instant while you're masturbating when you're just about to cum, the physical crest of the moment . . . and then it subsides, with nothing coming out??? I actually thought it was just me – until it came up in the group and several guys chimed in with their own "missed moment" experiences. I guess at that point my now-famous resolve (at least to me, anyway) kicked in, and I decided that my next series of masturbatory experiences would all end in orgasm – or else! Well, I have to admit, there were some nights of close-to, sometimes-more-than, a hour of sweat-and-strain (certainly must've been good for losing weight, if nothing else) – but I've now "jumped over that hurdle" as well, and I'm back to my ol' easygoing masturbating self.
So, What Have I Learned? Well, being a Gay Man Of Color . . .
Suffice it to say, this latest struggle to maintain my personal sense of superior health and well-being has most certainly left me with a few, shall we say, "life-lessons." First of all, I've had to become aware of the importance of my identity as an African American gay man, a man of color, in continuing to maintain a sense of personal good health.
My several visits to both my oncologist and my urologist consistently placed me in the company of other "mature" African American and Latino men, also in their waiting rooms, which eventually made me think, "Wow, I guess prostate cancer really does seem to adversely affect older men of color! . . . Doesn't that mean that as older men of color we have perhaps an even more serious responsibility to pay diligent attention to our own health – if we're so seemingly susceptible to this disease?"
And the answer is, yes, that's exactly what that means! As men of color we don't have the luxury of assuming that the society in which we live is going to look out for our best interests. We really can't take anything for granted – certainly not our "assumed" civil and human rights, and, in this case, not even our dependence on a society that will assist us in watching out for our own physical health. We really have to become much more pro-active in keeping ourselves physically healthy – constantly, and vigilantly, watching our health and maintaining our own sense of physical security and independence.
This was somewhat of an epiphany for me – because I may have taken such reliance on physical well-being as a given when I was younger, but I don't anymore. I know now, even more than ever, that I'm not a passive, but an extremely active, partner in maintaining my own sense of well-being.
Challenging My Doctors
Secondly, my experience with my various doctors has further underscored similar revelations I've had in the now-more-than-12 years of dealing with HIV – that our doctors, unfortunately, simply don't know everything. In many instances, they know barely more than those of us who consistently take the time to search the Internet and process with our friends and support group partners in similar circumstances about how to navigate the vicissitudes of having – and enduring – HIV and AIDS.
Admittedly in their defense, it's not all their fault. They've got caseloads of patients – they're basically hitting-the-ground-running! They're doing their best trying to keep their patients healthy – they simply don't have the time to do the research or the processing that so many of us patients do to find out what's wrong with us, and how we can rectify those wrongs.
That said, I still think it's important whenever necessary to hold our doctors' "feet-to-the-fire" – to challenge their decisions about our possible health solutions when we don't feel they accurately reflect our particular demographic or individual characteristics. I consistently have to remind all my doctors that I'm a gay man – and that means a veritable host of different circumstances with which to contend; everything from diet, to sexual practices, to pill-taking regimens and discipline, to, at times, specific drug and substance use choices.
Okay, case-in-point! Upon leaving the clinic after my seed-implant surgery, I was informed by the attending nurse about the various circumstances in which I had to be careful, since I now had radioactive iodine seeds in my prostate, and perhaps my semen as well – i.e., don't impregnate women, refrain from having children sit in my lap, things like that.
Well, dear reader, by this point you must know me! I instantly countered: "That's not at all applicable to me! What about masturbation? - Am I going to have to throw away a towel immediately afterward because it has ‘radioactive ejaculate'? And what about oral sex with men? – If I ejaculate, is my sperm going to be radioactive in their mouths?; And furthermore, what do I do about the occasional ‘bareback' encounter? – Should I, and he, be concerned about my ‘radioactive sperm' being inside his anal cavity?; What about all of those highly-probable circumstances?"
She replied (after closing her gaping mouth), "Well, we don't have any data on that." To which I immediately countered (okay, somewhat smugly, I admit): "Well, you should consider to whom you're speaking – I'm a gay man; I have a completely different set of circumstances here. So unless you can address those, you're not really talking to me, are you?"
Now of course, everyone can't be as "frighteningly-out" as I am – I know that. But I still contend that it's about making our doctors as educable as possible. They need our specific, distinctly different information. And my feeling is . . . if you come across a doctor who seems to "cookie-cutter" you into a category recognizable to him, and thereby prescribe a solution, a remedy, or a choice of operation to you having absolutely no awareness of your specific, individual needs as a gay man – well, keep going ‘til you find a doctor who will listen. Because after all, we really do have different sets of circumstances with which we have to contend . . . and we deserve to be treated accordingly.
A New Epidemic?
Lastly, I feel as if there's a sort-of "tip-of-the-iceberg" situation here. To this day I contend that my prostate cancer developed as a result of four months of testosterone injections, without monitoring my PSA level. Well, within my "sex-circuit" circle of friends, especially-sexually-active gay men, testosterone is almost like the second "cocktail" (for those of us who're doing "HIV cocktails"). Which leads me to believe that we're on the verge of – if I may be so bold to say – a second "epidemic" of prostate cancer among sexually-active gay men -- not all "mature" ones at that.
So in a way, I feel as if I'm somewhat of a "test case" for the plethora of gay men who are doing just what I did – and may not be vigilantly monitoring their PSA levels as they're taking shot-after-patch-after-gel-after dose of external testosterone or any other steroid. As such, I feel it behooves me – rather, compels me – to make my situation as public as possible, to help other gay men in testosterone-driven circumstances similar to mine, to monitor their PSA levels before they become cancerous. Again, yet another reason to be as vocal and as visible as I can about my situation!
Living to Tell the Story!?
All said, I guess I feel extremely lucky (well, actually, almost blessed) to have licked yet another opponent and arisen victorious! . . . I often joke with many of my gay male friends of my generation (I'm 51 now), about how we seemed to have surmounted so many obstacles, and yet are still alive – and so it's no wonder that we feel somehow like, well, I guess like warriors! . . . I know I do. . . . And I plan to keep that feeling with me – because I am certain I will most assuredly need it for the next time (and trust me, there will always be a "next time") that life "throws me a curve"!
Respectfully Submitted by LIDELL JACKSON, February 2003