This Positive Life: An Interview With Gary
March 10, 2010
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Switching gears a little bit: After Thom passed away, when did you start dating again? What was the process of getting to that point?
It's still something I'm dealing with. [Laughs.] I've had several relationships since then, but nothing very long or very serious. It's hard to compete against a ghost.
Thom was my soul mate. It was a wonderful situation. I haven't really been in a very long-term relationship since then. I know I need to move on, but I just never have been able to that much.
I was diagnosed with prostate cancer in 2001. Part of the treatment that I went through was the radioactive seeds, which pretty much destroyed the prostate gland, which is where the testosterone is produced and that type of thing. Without that, there isn't much of a sex drive.
Since then it's been kind of, "OK, well, maybe I can really get myself up for this if I try." [Laughs.] I can't take any testosterone supplements because testosterone doesn't feed prostate cancer, but it helps it grow. I haven't had a date in probably four to five years, at this point.
You never know if the equipment's going to work or not. [Laughs.] That's part of the problem.
Has that been stressful for you at all?
Yes. It's something that's very hard to deal with, actually. I'm 60, and so maybe my sex drive has lessened because of age.
I'm optimistic that at some point maybe I'll meet somebody that just really blows me away. That's kind of the feeling I have, but it hasn't happened.
Optimism is a wonderful thing.
I think it's important, having that. I've dealt with depression. At one point, I never thought I'd live to see 2000. I blew past that and then I thought, "Well, I'll never live to see 50." I blew past that. [Laughs.] Now I'm 60. And it's 2009. My T cells are at 400 and viral load's undetectable. I should be around for another 10 years. [Laughs.]
[Laughs.] There's a lot to be optimistic about, it sounds like. How did you cope with depression?
I've had counseling and also medication. The combination basically works.
Since we are talking about health: How have you found the different HIV/AIDS specialists that you've worked with over the years?
In Detroit, I just went to my regular doctor, who was gay, specialized in HIV/AIDS and just had gay clients.
When I moved to Cleveland, I asked several of the HIV/AIDS organizations around there who they would recommend, and they recommended that I go to University Hospitals, which is part of Case Western Reserve University in Cleveland. That was a very top-notch hospital, so I was very fortunate to have gotten into that type of medical situation there.
When I moved to New York in 2000, I found my doctor through the AAHIVM [American Academy of HIV Medicine], and also through work -- I was working for Community Prescription Service, which was based in New York. Then when I came here, it was just through references that I knew of the doctor that I wanted to use here in Fort Lauderdale.
What have your relationships been like with your doctors? Do you feel as if they listen to you?
My doctor in New York knew enough to listen to his patients, and to hear what they had to say. He knew my background also, so he knew I was involved with medications. At that point, I was working at Community Prescription Service. I was actually running the company after Stephen [Gendin] had passed away. We worked together. That's how I approach it now. I really want to work with my doctor and not just blindly do whatever he or she says.
In 2000, you moved to New York. Then in 2001, you were diagnosed with prostate cancer. Can you talk a little bit about that?
Yes. It was kind of weird the way I found out. I would have symptoms like I had an STD. I would have a discharge. There was one point where I said, "Well, that can't be, because I haven't been with anybody in a month." [Laughs.]
I went to the doctor and they would do a test and they would say, "There is no STD, but there is some type of infection."
They'd give me an antibiotic and it would clear it up. This went on a couple of times. At one point, the doctor said, "Let's make an appointment with an urologist." I went to see the urologist and that's when he did an exam and felt the prostate and felt a little bump, and said, "It could be a cyst. It could be prostate cancer, but we need to take a biopsy." That's when they did the biopsy. And the test came back positive again.
Where did you go for your care? How did you make decisions about what to do?
I was working at TheBody.com at the time. [Gary was part of TheBody.com's staff from 2001 to 2002.] The prostate cancer diagnosis really rocked my world because I'd become accustomed to living with HIV and was doing well with it. Now it was another serious thing that I had to deal with.
Through the research I had done, I knew that Harvard had a very good HIV and cancer specialist doctor [Bruce Dezube, M.D.]. I had found out about that through TheBody.com. I went to see him and got some advice from him. Then when I came back to New York, I met with my urologist.
It's strange. I was only 51 years old when I was diagnosed with prostate cancer. Most men are diagnosed with prostate cancer in their 70s or 80s. They're older and they do exactly whatever the doctor tells them to do. Well, I wasn't that kind of patient anymore. [Laughs.]
I had this doctor -- he was an older doctor and dealt mostly with straight men and prostate in elderly men. I came in and I had already been to this specialist at Harvard and I knew what treatments I should do. He didn't agree with some of them and I said, "Well, that's what I want to do." He would get a little upset with me. But I said, "No, that's the way I want to approach the treatment."
He was miffed at certain points because I wouldn't do exactly what he wanted me to do. He was used to his regular patients just saying, "OK, yes, doc, whatever you say." I would question him and challenge him and say, "Why do we need to do that?"
One of the doctors that he referred me to, a surgeon, wanted to go the whole route of removing the prostate and then having external radiation, and there were all kinds of hormonal treatments and all of that. I said, "No, I don't want to do that." I knew that from the research I had done, also from what I had found out when I had my consultation at Harvard.
What this surgeon had recommended was unnecessary, especially with my case. I was diagnosed very early. The cancer had not progressed very far. Prostate cancer is a very slow-growing type of cancer, so there's actually even a watch-and-wait type of approach where you don't do anything. You just monitor it.
But having the HIV complicated matters and I felt that that wouldn't be a good approach. You just don't know how your body's going to react to things. Also, living with cancer in your body is kind of a mental thing that you have to deal with. It would be something that'd just be hanging over me all the time. So I decided, "OK, I want to get it taken care of. Let's do it."
They implanted the radioactive seeds into the prostate. At first there really aren't any problems from it, but as the radioactiveness of the seeds inflamed the prostate and started killing the prostate, which also killed the cancer, it inflamed everything in that whole area. After about a month is when, really, the bad part of it started, and the pain and all of the discomfort from that.
I'm going to get a little graphic here; there were times where I actually had to lie down on my back in order to pee. I would go into a spasm because it felt like I was peeing fire and barbed wire and gasoline all at the same time. I would go into a spasm and I'd stop and then it would make it worse. So I would literally have to lie down on my back and get a cup and try and relax enough that I could relieve myself. Having to deal with that was really difficult.
But I had a very good support group at the time too. I was involved with a prostate cancer support group for gay men in New York. That was a once-a-week meeting. That was helpful. There were a few others in the group that had HIV, but most didn't. But, again, it was a support group and it was helpful.
How long did your prostate cancer treatment last? For how long were you in this very intense pain?
It was about a year. It would come in waves. Sometimes it would be worse than others. It also depended on what you ate. I couldn't eat any foods with acid because that would inflame it more as you urinated. Alcohol was also not a good thing. [Laughs.]
There were things that I had learned not to do and not to eat or drink, like grapefruit juice or tomatoes. You really had to watch your intake. I would go, "OK, yes, I think it's getting better. It's not quite as bad as it was last week." Then the next week it'd be just as bad. But gradually, over time, it did lessen.
The first month was fine. Then starting after that month, probably the next six months were the worst period. Then it gradually got better over the next six months. It was about a year that I had to deal with the pain.
It sounds as if having these two major diagnoses -- two major illnesses -- was overwhelming for you. How did you deal with that feeling?
That was a hard one because I had come to grips with living with HIV. I was OK. And then I hear I have cancer. Of course that brought back Thom, him dying of cancer and all the feelings that went with that -- it terrified me.
Part of my problem was I educated myself too fast on it and learned too much too quickly. There isn't the support information out there for prostate cancer that there is for HIV/AIDS. It's mostly older men who are involved with it. Most of the older men don't deal with it themselves. It's their wives who deal with the information. It was a totally different demographic in the information that was out there than there is with HIV/AIDS. Some of the information was old or it wasn't quite as accurate as it could have been. I really scared the hell out of myself one day. I remember just learning too much too quick and not being able to process it in a good enough manner.
At that point I then said, "OK, I've got to back off a little bit. Just kind of let it go and deal with things as they come." And that's more or less how I adjusted to living with the dual diagnosis.
Can you remember what happened specifically in that moment, that turning point when you said, "I'm taking in too much of this information"?
Yes, I remember reading something about, "Ninety percent of prostate cancer comes back within 10 years." And, "It's medical castration." All this other stuff. It was just too much information overload trying to figure out which treatment was the best. I thought, "If that's the case, maybe I should have the prostate removed."
Where was the support group for gay men with prostate cancer?
It was through St. Vincent's Hospital. That's actually where I had my cancer treatment, and the surgery done. The outpatient surgery was at the St. Vincent's Comprehensive Cancer Center. It's in Chelsea [a neighborhood in New York City].
Did your specialists ever think that your having prostate cancer at a somewhat earlier age than people usually get diagnosed might be linked to HIV?
They haven't really ever found that that's the case. However, I was on testosterone because my testosterone levels were low and I was taking the cream. It's been shown that testosterone feeds prostate cancer because the prostate is where a lot of the testosterone is created. There is the possibility that because of the testosterone that I was on, it may have come on sooner than it would have if I hadn't been on testosterone. But there's just absolutely no way to put a link between the two. It was also very early in the stage of growth. The doctor could hardly tell it was there, that there was a little cyst, that little bump. There wasn't any major growth or anything at the time.
How's your health now? How often do you go in for checkups?
I go in every three months. I was just there recently and T cells were around 400 and viral load's undetectable. Most of my doctors say, "We're just kind of monitoring and we'll deal with things as they come up." But usually nothing comes up. My health is generally very good.
Excellent. Is your cancer still under control and in remission?
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