My name is Rob, and in 2009, I was diagnosed with adenoid cystic carcinoma. It’s a saliva gland cancer. It’s located in the sinus area. So, my tumor was taken out of the sinus area, and my treatment left me somewhat disfigured, had facial scars, and my left jaw was taken out, my teeth were taken out, so I do have issues with anxiety, and stuff like that.
At the time I was diagnosed,I was single, and I’m still single. I think for a lot of people, appearance is the first thing they look for. I have issues with my appearance, and scars from all the surgeries. I have scars on my neck, and on my stomach area. So that affects socializing, and dating, and things like that.
Unfortunately, I was being misdiagnosed for about a year. Sometimes I had a bloody nose, and watery eyes, and I’d be misdiagnosed with sinusitis. I was diagnosed with that twice. Anyway, in the meantime, the tumor started pushing up against my left eye. I started noticing changes with the eye. I finally told the nurse, I said, “Something’s going on here.” About a year into it, they finally said, “Let’s get a CT scan and an MRI scan.” As soon as I got that, I could even tell that there was something in there. So that’s how we could tell.
I live in Kokomo, Indiana. It’s a town of about 50,000.
I was referred to a specialist in Indianapolis, at IU Health Center, and then I felt very comfortable with them, because they had a lot of experience.
That was the first time I was ever in the hospital. And then a year after the cancer, my gall bladder went, and then last year, my appendix ruptured. There’s really no connection. Maybe all the medications and radiation, it might have put stress on these other things. But as of right now, I’m four years in remission. In January, it will be five years.
It likes to come back in the chest for remissions, so I get a chest x-ray every year, and I have been getting an MRI every year, but the doctor said we can slow down on that, after we hit five years. Sometimes, if I get a cold, or if I get sinusitis again, that has to all be checked for cancer, since the symptoms are so similar. So it’s an ongoing thing.
I’m on disability.
I was working in factory type work, and I also worked for security companies in factories, and for the federal government.
I’m Gay and I am out. I haven’t really dated since cancer, with all the issues, and all kinds of issues. I’m not really dating.
But, I wasn’t out to my doctor. I don’t recall ever saying anything. I kind of don’t say it. It’s not really always on my mind. I don’t really think of it much. It comes up, but I don’t think we ever talked about it. I know just the nature of my cancer, we had to do all kinds of blood tests, and I got tested for HIV, and HPV and all of that, but I don’t think they asked me anything about sexual orientation.
They did ask if I’m married, or if I have any kids, and I just said, “No, I don’t have any kids.” I wasn’t dating at the time, so then they focused on my sisters and brothers, and who I was around.
I think the cancer is scarier than anything else. It’s important to be honest about your health history, because it can really affect your cancer. A lot of oral cancers are HPV related, as through oral sex, and there’s different ways to get it. Also, the HIV is also important too, so I’d just be honest. I didn’t really have anything to hide. I was just trying to think of ways to get better.
If you can find Gay doctors, that would be great, but some of the specialists, there’s so few of them, that you take what they have, basically. My radiation doctor, he’s real friendly, and he knows my sexual orientation, but I don’t think my specialists … I have about 10 or so doctors, so it just depends on the person.
The change in physical appearance makes you depressed. You may have anxiety about your looks. That’s my biggest issue, because I have a scar on my neck, and my left eye is kind of messed up from the surgery. Appearance is a big thing, I think. Of course, you have all kinds of people, so you have an opportunity to, maybe, get to know people in a deeper way, because the first thing, you’re not really going for looks, or something superficial like that.
I was very open about the cancer. I don’t hide the gay issue, but cancer, in the beginning, I was very hopeful, and just trying to get as much information as I could, so I was telling all kinds of people, so they wouldn’t be left in the dark. I was pretty open with it. I’m 45, so when I was … back in the ’80s, it was harder to be gay in a smaller city, and things like that, but the cancer seemed easier to tell.
I was seeing, I think it was on the internet or something, that the gay population is getting older, because they’re surviving HIV. When you think about it, if you’re getting older, your chances are really sky high of getting cancer as you get older. So I think we’re seeing more people with cancer in the community. It’s similar, in ways, to HIV in the beginning, but I don’t think that they really compete with one another, as far as attention.
You always think of things afterwards, because it’s not like what you expect. It was so fast. As soon as I was diagnosed, they wanted me to get surgery a couple weeks later, so I didn’t really have a chance to think about questions. If someone could write down things that you think of at home. If you have kids, or how it relates to if your spouse, your partner comes in to see you in hospital, I’m sure you’d want to tell your doctors all about that.
You know, once you’re faced with cancer, I would say, don’t be afraid of people knowing you’re gay, or anything, because I think death and cancer are the most important thing they’re trying to cure you from. Compared to that, I think being gay is not an issue at all, barely. I had no problem talking about it, a lot less after I had the cancer.
You could be facing death very shortly, and you might as well spend your life free, doing what you want, not being afraid. It makes you realize that death is going to be here, sooner than you think, so you want to live the life you want to live, and not hide anymore.
I’m in remission, five years in January, and it’ll be something I’ll always have to check, because this type of cancer has a high rate of coming back, recurrence, so I have to get x-rays for the rest of my life. Hopefully, my doctors will be with me for a while. But as of right now, as far as the cancer is, I’m in remission, and everything is really good. I’m just dealing with the side effects from the surgeries.
I think after being faced with cancer, you really want to live your life. You basically have no fear about any other issues. That’s one of the good things about cancer, is it really makes you not afraid of anything else.