I was diagnosed with cancer back in 2011. I’m in remission now. I’ve been clean since 2012. Actually I’m coming up on my anniversary of when I had my last surgery to remove the remaining metastatic disease in my abdomen. I’ve actually been working with Mike and telling him that I’ve been interested in getting involved in just being more active in the community of survivors and being more active as a role of an advocate and a person who is disseminating information to people because I’m very fortunate. I’m alive.
I found when I was going through this, I didn’t really have a support system. There really wasn’t a whole lot out there for me. For me that was something that was really damaging. I’m still seeing that there is pain from some of the issues that I as a result of having had testicular cancer. Then you add all of the queerness on top of that. It just makes it even worse. I’ve found over time that I’ve met guys who have said, “I was terrified. I don’t want to talk about it. I didn’t want to talk about it.”
I can tell you essentially what happened to me was I was in graduate school. I was really unhappy. I was really inactive. I had put on a ton of weight. I was very self-conscious about it. I was working with a friend of mine who was also in my program at the University. We started going to the gym together. One day we went to the gym. I woke up the next morning. I felt like I’d over-extended myself. My leg was really sore. My lower abdomen was really sore. It persisted for a couple of days.
I thought, “It’s nothing. I pulled muscle or I pulled a ligament or something,” but in the back of my mind I kept thinking about an incident that I had when I first moved to Seattle. When I first moved to Seattle in 2006 I didn’t have any health insurance. I was working at temporary jobs that later became a permanent role but at the time it was still temporary. I felt a lump in my left testicle. I went to a local community clinic and saw a doctor there. The doctor said, “You’re fine. Nothing to worry about.” He actually tested me which in retrospect I’m just appalled by this.
He said, “You’re too young to get testicular cancer.” I was 29 at the time going on 30. “You’re too young to get testicular cancer. That’s an older man’s disease.” I went home. He said, “Keep an eye on it. If it gets bigger, if it hurts, if something happens, come back and let us know.” Over the course of time it never got any bigger. I never felt any pain. It was just there, this little nodule on my testicle. I didn’t think much more on it. Also, I didn’t think much about it because who really wants to consider the fact that something might be wrong with their genitals?
This went on for years and years. No pain. Nothing changed. Suddenly I find myself back to the gym. I’ve got this injury. I went to visit my doctor who I adore. She said, “You should have been monitoring this. I’m worried about it. Let me send you to an ultrasound person. They’ll take a look at it. We’re going to do an ultrasound.” I went to the ultrasound specialist. When I went to them, they did an ultrasound on my left testicle. Within minutes of me leaving the clinic, I stepped out of the building and made it to the street corner. My actual doctor called me and said, “Listen. We found something on your ultrasound that’s pretty dangerous. We need you to go see a neurologist.”
They sent me to see a neurologist at the University of Washington. I went in to see this doctor. Moments after I arrived the first thing he said to me is, “We need to schedule a time for you to come in so that we can remove your testicle.” I said to him, “Excuse me? Don’t you do a biopsy?” He said, “With testicular cancer we don’t actually biopsy. We just remove it and then tell you later if it’s cancer.” My response to him was, “No, I don’t think so, man. You’re not just going to remove my testicle and then come back to me and say, ‘We didn’t need to do that it was benign.'”
I was already dealing with enough self-consciousness about my sexuality and my worth as a person and a man. The last thing that I wanted was to lose my testicle. I went and saw 3 other doctors. One of the doctors that I saw said, “I’m not entirely convinced that this is cancer. I think that it could be just a bacterial infection.” Now my history with my testicles is that I actually had a series of epididymitis in my testicles. For me it was like, “That’s perfect. It’s not cancer. It’s just another bacterial infection.”
He said, “Come back in. Let’s take another look at this.” I come back. Mind me, some of the history for me is a little cloudy. I don’t have my medical records in front of me but if I recall correctly when I came back, they took a look at it. The small dot that I had on my testicle actually had expanded pretty significantly. He said, “We need to remove this.” Now in addition to this when I was first diagnosed if I recall correctly, when they did a blood test there wasn’t evidence of cancer in my blood. There was just this spot on my testicle.
They also did a CAT scan on my abdomen which was nonreactive as well. There was no evidence at all in my abdomen either of there being anything to be concerned about. I come back in. They did a CAT scan. He said, “There’s nothing in your abdomen but this nodule in your testicle has gotten larger,” wherein the removed the testicle. It comes back. It, in fact, is cancer. It has gotten larger over that period of time which was about a month, maybe a month and a half. They did some blood work. It turns out that the cancer had spread. It was starting to show up in my blood.
He sent me to see another doctor at a different hospital.
I feel like some of the things that happened to me with these next 2 doctors that I worked with for me it was emotionally scarring for me. It was psychological damage. It’s one of the things that I’m most concerned about when I talk about cancer is the fact that we have medical professionals that are trained to treat your body but don’t give a shit about your mind and don’t care about how you feel as a person. You’re seen as just a number.
To me, my experiences at this second hospital that I visited … My father was actually with me while I went to chemotherapy. He kept a lot every day of everything that happened. Some of the thing that I endured while I was at this hospital are tantamount to human rights violations like doctors ripping bandages off of me, accusing me being the problem for things occurring and me telling people that I’m actually a threat to myself, that I actually felt like I was going to kill myself and doctors getting out and walking out of the room and not even acknowledging the fact that I said, “I might hurt myself.” I’m not going to use these doctors’ names.
I came out of the closet in 1992 when I was 15 years old. I grew up in New Mexico right outside of Albuquerque. I had some things happen to me earlier in my life that some people would probably consider sexual abuse. I’ve had issues my entire life with sexuality but when I got to high school I had people picking on me incessantly. At that point in my life I said, “You know what? If I’m going to have being abusive towards me, they’re going to be abusive towards me for the right reasons.”
I came out of the closet, admitted who I was, tolerated a bully, tolerated all the garbage that came with coming out of the closet at that time in my life, at that era in the world and in my 20’s in New Mexico and realized, “T here’s more out there for me.” I moved to Seattle because I felt like this was a better community. There was more support here. There was more opportunity as a gay man in Seattle. I got here. I was diagnosed with cancer. I’m still single. I was still struggling through a lot of the issues that I had with my body and issues with my sexuality that were still very pervasive in my life.
The particular kind of cancer that I was diagnosed with just led to more doubts and more insecurity in my life because A, I was already dealing with weight issues. I was dealing with being gay. Then on top of this I have a doctor coming to me saying, “I’m going to remove your testicle.” I think most men define their masculinity and their sexuality by their genitalia which is unfortunate but I think most guys if you ask them they define their self-worth inside of their penis and their virility. I actually sacrificed my health in some ways because I was so afraid as a gay men of what other men were going to say to me when I took off my pants and saw that my dick and my balls looked different than other people.
Rather than being practical and taking care of this issue and preventing it from spreading, I actually allowed it to on longer than it should have because I was too afraid to go and talk about it and deal with the possibility that I was going to have to have one of my testicles removed. As a gay man, it’s interesting because when I was in my doctor’s I had told him that I have a special set of circumstances I’m gay. The things I’m going to experience as a survivor of cancer are a little bit than my heterosexual counterparts.
Again, at the time I was really overwhelmed. I was really scared. I wasn’t as resourceful as I could have been and should have been. I wasn’t even aware of a group like yours. Part of that is because I was just frankly too exhausted to do the research to find people. When I reached out to my doctors, my medical health professionals and said, “Listen. I am a gay man. I have a special set of needs and a special set of circumstances that I’m going to be living through that I need to address,” there really was no response to that. They said, “What we’ll do is we’ll set you up with a counselor.”
By setting me up with a counselor I mean that they gave me a list of about 30 people and said, “Here you go. Start making phone calls. Hopefully, you can find somebody who’s going to help you.” The mix of me being in graduate school, me trying to work a full-time job and then being diagnosed with cancer, my doctors weren’t even really willing to help me find counselors much less tell me what kind of resources I should look for on the internet. They basically gave me a list and said, “Good hunting.”
What I did is I called a couple of doctors and fortunately managed to find a really good counselor who worked with me for a lot of my issues in terms of how I was going to re-negotiate my gender. I was going to re-negotiate my masculinity despite the fact that my genitals now looked different than other people. When I was going through chemo, it took 3 1/2 months. I went through 2 cycles of infusion. I was in the hospital for 3 3-week cycles. The first week of each week I was in the hospital for I believe it was 6 days a week for 8 hours getting an infusion the entire day. Then the following 2 weeks was an infusion for an hour. Then I’d start the next cycle.
Excuse me. It was just a few months long. When I came out of this, my doctors at the time said this was a good thing. I was not very happy about it. I had packed on a ton of weight. I was bald. I looked sick. I was sick and went through that entire fall fighting cancer with the chemotherapy. When I came out of that that December, excuse me, that January, my doctors called me back and said, “We’re really sorry that the chemotherapy didn’t work. Then you’re going to have to have an additional surgery to remove this.”
I was furious. I was absolutely enraged. I was just ready to get on with my life. I had been single for a very long time. I was very lonely. I wanted to find a boyfriend. I felt like I had just fallen behind in my life with all of these medical issues that I had. I had already lost my testicle. I didn’t want somebody else cutting into me again. I actually had a really severe argument with my doctors, a shouting match actually, about how angry I was that they never told me that I was going to have to have another major surgery and that they made me get some chemo when I could have just had the surgery in the first place and removed the damn cancer.
At the time I was somewhat ignorant. I was angry. I needed somebody to lash out at. My doctors were there. I was very angry with them because I felt like there hadn’t been any transparency. They tell me that I’m going to have to have a rectal thing and a lymph node dissection. In fact, I told my father at one point being the person that I am, that I wasn’t going to have it, that I didn’t trust them. I agreed to have the surgery. I’d go in for the operation.
I get out of surgery. My experience in the hospital was horrible. The nurses and doctors that I dealt with while I was there were sub-par at best in most ways. There was actually a doctor that was there. He came in and wanted to look at my surgical wound. Rather than removing the adhesion gently, he started just to rip it off which in turn ripped off my skin. I’m actually amazed my father didn’t go to jail because he lunged at the doctor because they literally had no care for me.
They just ripped it right off my body and took the skin with it and then tried to say that it was my fault, that I had moved wrong. It was an excruciating experience but in a couple others and the worst thing about this which is something that I’m still seeing doctors about as I’m still struggling with my life was that as a result of this surgery that I had, I now have a retrograde ejaculation. I’m probably not going to have kids anyway because of chemotherapy. Now I can’t even function like another man does sexually. As time as passed since that surgery, my orgasms are less and less … There’s less and less orgasm.
I enjoy sex much less than I did. From a psychological perspective, sexually now it’s a disappointment. It’s something that I struggle with every time because at the end of it, there’s always this let-down that once again I’m back to reality, that I’m different than other men, not only from the perspective that I’m different in the sense that I’m gay but now I’m different in the sense that my body doesn’t work like other people. My body doesn’t appear like other people’s. In many regards not only have I been different in the sense that I’m gay, I’m also different in the sense that I’m physically different than most men.
For me, it was a very heartbreaking experience. I survived cancer. I’m very grateful for that. I give my doctors the credit that’s due because they saved my life but in my recovery process from that, I actually approached my doctors during an appointment and said, “Something’s wrong. I know that I’m physically okay. There’s no cancer in my blood. There’s no cancer in my body but mentally something’s wrong. I’m still seeing a counselor. I can’t seem to get myself feeling right.” I went to my 3-month appointment with them. They said, “It’s okay.”
In regards to the retrograde ejaculation, she said, “It’s fine. You’re going to be okay. Usually it takes about 6 months for that to fix itself.” I came back at the 6-month point. I said, “Look. This isn’t changing. It’s affecting me emotionally. It’s having a really adverse effect on me psychologically.” I told them, “I feel like I’m going crazy. I feel like I’m going to be a threat to myself.” I started crying. My neurologist answered his cell phone and walked out of the room. My oncologist sat there long enough for me to finish my sentence, looked at me and said, “Okay. We’ll see you at your next appointment.”
As I’m sitting there balling my eyes out feeling like I’ve lost my mind, my other doctor walked out and left me there to my own devices. I told them that I was feeling like something was wrong. The next appointment when I came in to see them they said, “You know what? Perhaps apart from because you lost your testicles, you have deficient testosterone in your body. Maybe we should put you on testosterone.” Between 6 to 9 months after my surgery, almost a year after I had my testicle removed, somebody [inaudible 00:21:17] me, “Hey, by the way, we removed one of your gonads. That means that you have an androgen deficiency now. You should address that.”
It took me coming into my doctor’s office and saying, “I feel like I might hurt myself,” for them to say at my next appointment, “By the way, we should think about putting you on testosterone replacement.” I have a very complicated relationship with my doctors. They sent me to another doctor who put me on testosterone. Now I’m mentally healthy again. I don’t feel like I’m losing my mind any more. I’m seeing a therapist through the Seattle Counseling Service here who is also gay and is also working with me to address the issues that I have in terms of my sexuality and how I deal with the fact that my body is now different than other men.
Over time, I’ve been able to find a support system but at the time, I didn’t really have that. I certainly didn’t have it locally. As a gay man, that was devastating to me. It was very hard for me, especially in terms of the fact that I felt not only, other than my sense of my sexuality but now in the sense of my physicality. It took a very long time to get past that and be comfortable with my body again.
I’ve been out to my parents since 1992. I came out when I was 16 years old. Despite some of the medical problems that I’ve had in my life, I’m very fortunate in the sense that my family, especially my immediate family, my support system has been spectacular. My mother and father have been there to cheer me on my entire life. My younger sister is amazing and has been a champion of me from the minute she was born basically. In that regard, I’m very fortunate. Now my family still lives in New Mexico. When I came out of the closet when I came and told my parents that I was diagnosed with cancer, I was looking to do something with my life.
I was pretty bitter. I had a chip on my shoulder. I was thinking about problems that I had with my family when I was a child and some issues with abuse. I had distanced myself from my family a lot. To be honest with you when I was told that I was going to have to have the chemotherapy, I didn’t want anybody to be here. I was completely happy to go through this on my own. Part of that was that I was mad at my parents. I was mad at my family. I didn’t want them to be here because I didn’t want anybody to see me vulnerable.
I felt like in some regards that most of my life people had seen me as a victim and as somebody who was incapable of taking care of himself as an adult because I fell a couple of times during my 20’s. It took me a while to pick myself back up and get my head straight. I was living in Seattle. I didn’t want anybody to see me as, “Oh, God. Here we go. Aaron needs help again.” I was also looking to the fact that I was abused as a child. When my doctor said to me, “You need to have somebody come take care of you as you go through your healing process,” I was like, “Nope. I’m going to stay with my friends.”
My initial diagnosis, I didn’t invite my family to come out here because I didn’t want anybody to see me be vulnerable. I didn’t want anybody to see me after I lost part of my manhood. My father who has always been an idol for me, it was almost a humiliating thing for me to have to tell my father, “Hey, I wanted to tell you I’m gay which means I’m different than what you expected from me but B, now I’m missing a testicle. I’m going to have to go through chemotherapy. Any dream you ever had of me having grandchildren are pretty much being flushed down the toilet right now.” I didn’t want my parents to see me like that. I didn’t invite them initially to come take care of me.
My father called me just within days of when I started chemotherapy. I don’t want to say sad but he was very concerned and very worried that I didn’t really understand what I was getting myself into to start with chemotherapy. He talked me into allowing him to come here to take care of me. It was actually one of the best decisions I made in my life because of my father. He got to see somewhat what my life was like before the chemotherapy got so intense that I couldn’t actually really live my life as a normal person.
He got a sense of what it’s like to be me in this city. It was really the best thing that had happened to me. It actually evolved my relationship with my father from stepfather/son to more like a best friend relationship. In the end I was so grateful to have him here and so fortunate to have that 3 months of bonding time with.
I’m mixed race. My mother is white. My father is mixed Hispanic and Chicano. I grew up in Mexico in Chicano culture. For some reason when I was a child there was a fixation in my family on who had the most Mexican blood. My cousins loved to ask my aunt, “Do you know who has the most Mexican blood?” My aunt would literally line us up based on our heritage and our bloodline and say, “All right. Your cousin has the most Mexican blood. This cousin has the least Mexican blood.”
My sister always came out at the end of that line which lent itself to being picked on, being made fun of, being ostracized. My aunt, I don’t think that she is educated or wise enough to have understood the implications of what she was doing at the time but essentially what she was doing was she was creating stratification in our family by which my sister and I were essentially being abused, being mistreated, being left out and being made to believe that we were less than because we weren’t the same blood type as our cousins. It was pretty absurd.
As an adult, I’ve always felt like I have to show my brown card because when I tell people that I have Mexican heritage despite the fact that I have a Swedish surname and I’m light skinned, people always doubt me. It’s frustrating because I feel like one of the things that I have to do in order to prove to people that I am, in fact, a descendant of Mexican people is I have to speak in Spanish to them which I do. The irony is that out of everybody in my family, I, the person who is the least Mexican of all of them, is the only one who speaks Spanish.
There was a nurse that I worked with who really loved me. I told her, “These are the things that I want. I am a person of color. I am a gay person. Here’s who I identify with,” that was one of the things that actually helped her to help me to find what doctors I should be looking for. When I got a list from my so-called social worker at the hospital, it was useless to me because it was basically just a list of doctors. Everybody I called said, “I’m not taking on patients,” or, “I’m not available at these times.”
When I went back to the social worker nurse and told her, “These are the identities that I have and these the things that I’m looking for,” she actually took that and ran with it. She said, “Look. These are the people that I’m aware of that will be able to help you.” But that was really the only time that I ever brought that up at any point during my treatments. The only real time that those things have come up is when I’ve been working with my mental health care professionals.
I’ve never actually talked to my neurologist or my oncologist about the fact that I’m gay. My original neurologist that removed my testicle knew that I’m gay because I had a more candid conversation with him because I felt more comfortable with him than I did with my final 2 doctors but the 2 doctors I have, I think they know that I’m gay just by default. They’re not stupid men. It doesn’t take a whole lot to discern that I’m gay but I don’t feel like I ever had to play those cards with them.
I think with a lot of gay people, I know several of my friends who are gay or are gay men who identify as gay who actually had testicular cancer and actually did not come out to any cancer survivors.
I think that’s one of the things that you find with the gay person, that our people that are there to take care of us, to support us and help us through life-changing events such as a diagnosis of cancer frequently end up being our friends because many of these people don’t have families or they have families that they’ve chosen for themselves because their biological families have stepped away. I think that’s something extremely unique concerning what it’s like to be a gay person with an illness. I know I have friends who are older, friends that have survived breast cancer, friends that have survived prostate cancer, whose families checked out on them in the ’80s.
I have friends who are HIV positive who have been very sick whose families are nowhere to be found because they’re HIV positive. A lot of that actually is the fact that they’re gay. When I talk about a support system, in a lot of ways it’s just the fact that some say, “The family that I’ve chosen, which is my family and friends.” I’m very fortunate in the sense that I have an extremely supportive family but [inaudible 00:34:50] it’s not just friends. It’s also my family but many of my friends don’t have that. At least from what I know, their families are nowhere to be found because they’re gay.
Now coming out as a person who’s been diagnosed with cancer, for me the vast majority of people stepped up and said, “Hey, I want to be there. I want to help you. You need me to make dinner. You need me to take you to the hospital. You need a shoulder to cry on. You need whatever. I’m there, “but I did actually have some people approach me and say that they felt that it was inappropriate for me to post on Facebook that I was surviving cancer or that I talked about it too much or it that it made them feel uneasy that I was so candid about the fact that I had lost a testicle and that I no longer ejaculate.
Some of the physical aspects of going through cancer made people really uncomfortable. I think a large part of that is that when you look at society, we’re awkward when it comes to talking about men’s bodies. We live in a world where you can show a woman’s vagina. You can show a woman’s breasts on television and objectify them but you rarely ever see a man’s penis. It’s because penises and testicles make people uncomfortable. When you talk about them openly, when you talk about them frankly in a manner and much less talk about them in a way where people see them as something that’s not healthy, that’s very in your face.
It makes people very uncomfortable. I have people tell me, “I wish that you would stop talking so openly. I wish that you would keep this a private matter. This isn’t the kind of thing that you discuss in public. It should be kept at home behind closed doors.” I actually had people tell me that it wasn’t something that I should talk about publicly.
My response to that was and my response to that will always be that that mindset, that mentality, that approach specifically with illness, is why people still die from testicular cancer. I’m not going to stop talking about it.
I have a prosthesis on my left side. Unfortunately, everybody that sees it tells me that you can’t tell the difference but it’s significantly smaller than my other one. Things feel weird. It’s a bit weird now. It’s awkward. When it gets really cold outside, it actually hurts me. It makes my groin ache but I’ve had friends who survived testicular cancer who chose not to get a prosthetic. For me, it’s just a choice. I’ll be really honest. At the time I was overweight. I was really immature. I was being pretty vain at times. Anything that I could do to make my body look any different than other guys, I stepped up and did.
I’m very sexually active throughout my life. I have a very healthy sex life. I’m seeing somebody right now who I have not seen in a long time. Currently I’m not sexually active but I have been since my diagnosis and since my recovery from cancer. That’s always an interesting thing because it makes sex to me a bit more complicated than other people because I always have to have the conversation about cancer whenever I’m intimate with somebody because things are different. I don’t want to startle anybody.
I don’t want them to get into my bed with me, reach down there and feel something that doesn’t feel like an organic body. I like to talk to people beforehand because when I have an orgasm I don’t ejaculate. In the past when I’ve not had that conversation with people prior to being intimate, I come but I don’t come.
I have an orgasm. Then people just look at me like, “Did you come? Did you have fun?” I always have to have this lecture with people about cancer survivorship, retrograde ejaculation and false testicles. To be really honest with you, it’s made every single time in the past when I was having casual sex with someone in the moment, it’s made that [inaudible 00:42:32] less exciting. Sex has actually become a bit of a bore for me which is why I’m not looking to date or looking to have casual sex.
I have chosen a partner. I want to stay with that person because I can have sex with him. I don’t have to talk to him about test results, retrograde ejaculation and all these other neat pieces of my life that just make sex a bore. I can actually have sex with him.
Long before I was diagnosed with cancer, I had sex with somebody else who had Stage 4 cancer years before he and I met but I did not know about it until we were actually in bed. I noticed that he had a scar. I asked him about it. I’ve had sex with somebody else who survived cancer but not the same cancer as me. Much different and a much more dangerous form of cancer than what I had.
I’m actually extremely active. I have a very busy life but when I say, “I’m tired,” I really mean it.
I mean it in a way that is much more intense than I think some of my other friends when they say, “I’m tired. I’ve had a long day.” To this day when I’m tired, it means I am tired. It’s not different than the things that I have when I reach the point of exhaustion, it’s very similar to the way I felt when I was in the midst of chemotherapy. I have neuropathy from chemotherapy. When I reach the point of exhaustion, it’s not just that I’m tired or I need a nap.
I lack the ability to hold onto things. I can’t hear. My hearing goes away. I have a high-pitched ringing in my ear that basically prevents me from being able to speak clearly. I start to stutter. I have all these things that were literally intensified by chemotherapy come back. When I’m tired, it’s not just that I need a nap. It’s that my body really stops functioning. Much of that is as a result of having survived chemotherapy.