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?
Keeping Healthy, Following New Paths
What else do you do to keep healthy? Do you exercise or do you eat healthily or anything like that?
I only live about a mile from the ocean, so I try to get out there as much as I can, maybe at the minimum once a week. I like to take walks in the sand. That's good exercise.
Do you swim at all?
Yes. I'm also very careful about what I eat and my diet.
There's a history of heart disease in my family. Back in my early 30s I eliminated salt, and since then I've been very conscious of having a heart-healthy diet.
How's the heart condition shaping up?
It's called cardiomyopathy, which is a slow thickening of the heart muscle, which could take 20 years to develop. It was recently found, because I'd had some lightheadedness and the heart wasn't beating quite right. It's nothing that is life threatening currently. I mean it could take, like I said, 10, 20 years before it develops into anything. Eventually, it could get into congestive heart failure because the heart couldn't pump enough, but at this point, I just have to try and keep my heart level below 120. There really isn't much else I can do.
When were you diagnosed with cardiomyopathy?
That was a year and a half ago. In the history of my dad's side of the family, no male ever lived past 65. They had all died of heart attacks before 65. My dad's first heart attack was at 58. But he lived to be 85. [Laughs.] He was the one exception.
Both his brothers passed away early. His father was 56 when he passed away. The family was very aware of heart conditions and heart situations, so I've always been also.
Was it a preventive measure to cut salt from your diet when you were 30?
Switching gears again: I know that you live in Fort Lauderdale, Fla. How long have you lived down there?
About two and a half years.
|Gary at his graduation from the Institute of Culinary Education in 2006.|
|A new dessert Gary created -- sweet puff pastry, peaches and strawberries.|
Did you move there straight from New York?
I was working at POZ Magazine, but had always been interested in baking and cooking. I decided to go back to school. I left POZ and I went to the Institute of Culinary Education in New York. I graduated from their pastry and culinary arts program. I had wanted to open up my own shop, and I always planned on retiring in Fort Lauderdale. I thought, "Why do I have to wait until I retire to move to Fort Lauderdale? Why don't I just move there and buy a shop?" Which I did. [Laughs.]
Unfortunately, about a year into that was when I was diagnosed with a heart condition and it was not something that I could continue. Even though you don't think of a bakery as hard work, there's a lot of hard work. [Laughs.] We baked around 300 bagels a day. It was just something that I wasn't able to continue. So I had to sell the shop. That's when I went back to work for POZ.
It seems that, except for the bakery, you've stuck with working in HIV/AIDS in some capacity. Do you ever get tired of talking and thinking about HIV/AIDS?
I think that was part of the reason I went back to school and studied pastry. You do run into a little bit of a burnout, but I'm not anymore. I had a couple of years off. I guess maybe that was what I needed.
It's such an important part of your life. It's important that you maintain information and your knowledge base about how to deal with HIV and the side effects.
As I'm aging, too, that's another aspect that's becoming something that people are paying more attention to now, as people with HIV are aging and surviving. What does aging and HIV mean, in combination? What are you going to have to deal with? What are the effects of aging with HIV?
I think that's an important new direction that studies are going into now, because those of us that have survived and are HIV positive are getting older. As you get older, you have health problems anyway. But researchers are trying to learn more and more about the effects of getting older with a weakened immune system, how that's going to affect that process.
Turning 60: Aging With HIV
Do you ever encounter any ageism, whether within or outside the HIV/AIDS community?
As you get older, you're not as desirable. I don't mean in all aspects of employment and society. I have found that people defer to me a little bit more, now that I'm older. [Laughs.] But society is so geared towards youth. I'm not old, but 60 was a big year, this year, for some reason. It bothered me. [Laughs.]
|Gary (second from the right) and his friends, celebrating his 60th birthday in Fort Lauderdale, Fla.|
Can you talk a little about that?
When you're growing up, 60 is old. [Laughs.] But it's not that old when you get here. I still feel like I'm in my 40s or early 50s. I forget that I'm 60. I'm glad I'm here. I never thought I would be here.
At the birthday, I said, "Good. I'm celebrating. I'm 60. I made it to 60. I've lived these years. I never expected to be this alive at this point." But then it's a double-edged sword. [Laughs.] Because, "Oh, I'm 60!"
Did you have a party? Did you celebrate your birthday?
Fort Lauderdale, and Florida in general, has a reputation for being full of beautiful, young people. Have you ever faced any ageism specifically down there?
I've been very surprised with Fort Lauderdale. I thought it was a very youth-focused culture, but it's not. Actually, a lot of older gay men have moved to Fort Lauderdale. It's actually quite enjoyable because there are a lot of people here who are my age. There's also the young crowd, but there's quite a large community here of 50-and-older gay men and HIV-positive men.
I didn't expect it. It was something that I hadn't thought about, but if you think about it, people come to Florida and retire. [Laughs.] You know?
|Gary, dressed up in "leathers and feathers" in front of rainbow Pride flags for the "Wicked Manors" Halloween 2009 celebration.|
Did you know anyone in Fort Lauderdale when you moved?
Yes, I had some friends here. I'd vacationed here for years and had several friends that lived here.
Is that how you found the larger community that you've gotten involved with? How did you meet people?
Through the shop I met some people, and through my friends, and just socializing. I got involved actually through an openly gay candidate who was running for mayor of Fort Lauderdale. He was a customer of mine at the shop that I got to know. I volunteered on his campaign and made pastries for the community meetings we had every Saturday morning. I got involved in that and met some people through that.
Lessons Learned in Living With HIV
Nowadays, how do you decide to tell someone that you're HIV positive?
It depends whether they need to know.
I'm very open about it. I think everybody knows. I don't know if I've come out and told everybody, but I just kind of assume that people know at this point. In business situations, it depends on the situation.
With my bakery, I did not make that public knowledge because there's still some stigma associated with that, as far as people coming into that type of situation. My shop wasn't in Wilton Manors, which is the gay community. It was in Fort Lauderdale, and Fort Lauderdale's very open as far as a society goes. There really isn't a problem, but I just didn't feel it was necessary to have that out as public knowledge in my business.
Who would you consider someone who needs to know?
Someone that I'm dealing with on a regular basis in more of a social situation. If it's a job, it depends on the type of job. Several jobs that I've interviewed for, I've been open about it. Others I haven't. It's on an individual basis.
Thinking back on all the years that you've been living with HIV, what's the best response you've ever gotten from telling someone that you're HIV positive?
I don't know if there's ever been a best response. [Laughs.] It's not something that generates a good, positive discussion.
I've always had good support, most of the time, other than from my sister. But I think that it's just really a situation where people are more aware of HIV/AIDS. But I still find that if they're not affected by it personally, they don't know much about it.
What about a worst response, or least supportive response, you've had to telling someone?
Probably from my sister.
Have you ever felt a lack from not having that support from your family; or do you feel as if you get it from other places and from chosen family?
I feel like I get it from other places. I mean it was my choice not to involve my parents with it. That was something that I decided. I did expect more support from my sister, but you never know. But I've had very good support. Especially since I've worked within the HIV community -- that's very liberating and very empowering. Living with the disease and then also working in that arena, you find out a lot more than you would normally do. That's been a part of my good support group.
What do you think are the biggest issues in HIV today that need to be addressed?
To me, the most important message that we still need to get out is that safe sex works and that unsafe sex doesn't work. It's not just a manageable disease. It's not like diabetes. There are a lot of things that you have to deal with. Just the physical cost of it. Even if you have insurance, you've got co-pays, you've got your doctor's co-pays, you've got your pharmacy co-pays, which could add up to a couple of hundred dollars a month. Financially, it's not something that's just an easy thing to deal with. Then physically and mentally, dealing with living with the disease and the side effects of the medications and being susceptible to a lot more things as far as opportunistic infections, you have to be very careful about that.