I am in a rural suburb of a medium sized city. I do computer website programming.
Prior to my diagnosis, I was actually doing it, not on a freelance basis, but as a regular full-time employee.
I married when I was in my 20s. I probably had some questions when I was in my 20s but I was a busy professional. I just didn’t think too much about my own desires and such. I did what everybody else did and I got married and had a bunch of kids. In my late 30s, early 40s I fell in love with a woman and realized that I had made a mistake many, many years ago in marrying a man and that my heterosexual identity was wrong. I hate to use the word wrong. It was mis-founded.
This actually does, it ties in with my cancer diagnosis. My original tumor was diagnosed really right about the time I met the woman who was kind of the catalyst for me understanding my lesbian identity. She was also someone who was supportive after the initial tumor diagnosis. It was an eye tumor, I lost an eye. Our friendship developed along with coming to terms with also the bad prognosis that eye cancer comes. It tends to metastasize at a pretty high rate, a rate of about 50%. It’s uniformly fatal when that happens. These were all very intertwined happenings in my life.
There were a lot of things that I did that I would not have necessarily done before. One of those things was developing that friendship, past the bounds of a regular friendship. I had this chance of dying so there was all this fear. I was just, in general, not engaging in risky behavior but, I was a shy person, and I developed this new attitude of “If I’m going to die you’re all going to have to put up with me and it will be short lived.” I was just a lot more likely to impose myself on people. I was in a much more delicate emotional place too, so that when that friendship became very close and eventually sort of intimate, I was just in a much different space because of that cancer diagnosis.
I was kind of out to everybody about the cancer diagnosis because I did lose an eye. I only had one eye, it was almost four months before I got my prosthetic eye, so it was pretty obvious to everybody I ran into that something bad had happened. I was pretty open about that with everybody from strangers on the street on up.
I started seeing flashes in the affected eye. I went to the eye doctor. Flashes like that would be somewhat normal, I was a little young, but at about this time in life you can have retinal detachments that would look like that. He couldn’t see any retinal detachment, so we waited about six weeks to take a look again. Then by that time you could see the tumor just edging out from around where it was hiding behind some other structures. It is a very rare cancer. It is actually less likely than being struck by lightning, I think.
It definitely makes you a lot more reliant on others, people who are fighting the same illness. For example, my local doctors don’t know anything about this particular cancer so it makes me have to take a lot more control of my own care. I watch a lot of people get very mismanaged because any kind of a rare disease, and it turns out that I actually also have a child with a rare disease so I’ve been doing this, she’s almost 14 I’ve been doing this for almost 14 years. There are so many rare disease the doctors can’t know them all, so that you kind of have to fill in the gaps of their knowledge and be very much your own advocate when they are treating a disease the way they would treat any other disease and not knowing the specific ins and outs of yours.
The Cancer Center I went to is in Philadelphia, it’s the Thomas Jefferson University Hospital in Philadelphia. Which is situated beautifully enough, and I’ll bring you back to LGBT, it’s right in the middle of the gay-borhood. Talk about delighted. I get there and I’m all like, “I hate big cities and I don’t want to go to Philadelphia for treatment,” you know, whine, whine, whine. We get out and there’s rainbows over all the street signs and I’m like, “Oh my God, this is awesome.” We have very much enjoyed, actually, the trips to Philadelphia.
This is where it becomes very complicated. I have a girlfriend/partner, I happen to also be legally married for insurance purposes. I’m still legally married to my husband of some number of years, I guess we should stop counting several years ago. That is a marriage which is completely on paper and for the purpose of raising children, so we’re still co-parenting. My girlfriend, partner, it’s hard to really kind of know what to call her in that space, does go with me on these trips and is involved in the care.
The diagnosis happened in 2009, I came out in 2010, and we started dating in 2011. When I say out, I came out to myself in 2010. I was still pretty cautious. It would have been the end of 2010 I think. She and I started dating in the middle, like the summer of 2011.
My husband I were still attempting to save our marriage, probably up through 2010. Really trying to figure out what we were going to do with the knowledge that we gained. By the time she and I started dating we were pretty clearly going to divorce, but we were living in this … At the time that she and I met, I was having scans every six months to determine if the cancer had spread. There was a 50% chance it was going to spread and wreak all kinds of havoc, and a 50% chance that I would never hear from it again and it would be over.
I had been an at-home mother since my second child was born, I’d been doing some freelance work, some part-time stuff, but I hadn’t been traditionally employed since my then nine, ten year old, seven year old, oh gosh how old is she now, she would have been seven back then when I got the cancer diagnosis. I hadn’t been traditionally employed in a while. The plan was that I would slowly get back into traditional employment that would provide health insurance because that was very key, obviously with the cancer diagnosis, and then move from that into considering divorce. Knowing every six months when I had scans, if we were to discover that it had spread that was going to change the game.
Not quite a year before Anne and I started dating, I did get the bad scan that showed the cancer had spread. At that point I was working full-time, I had health insurance, and we were thinking after this scan we’ll start to pursue the legal aspects of divorce and moving apart. That scan kind of threw everything out the window.
No. Yes and no. I went through a round of treatment a year ago, which held the tumor stable for a year. They just started growing again in September so now I’m on the second type of treatment, which is once a month. On the scale of cancer treatments it’s been described as “embarrassingly easy,” which it is. I go to Philadelphia, I’m in the hospital overnight, I feel crappy for three or four days, and then I’m pretty much back to normal. Again, it is a buying time, it’s not a cure but it should buy me some time. We won’t know until November whether it is actually buying me time or not, it only has about a 30% success rate.
For example, when you were diagnosed there was a threat that your life would end sooner than you would like it to, and you had children. You still have children, you’re in a relationship now that’s gratifying and I assume filled with love and happiness and all that, but you’re now restored to this point where your cancer isn’t as threatening your life yet again. Similar kind of feelings? Is there a sense of less hope now? Things like that, are you smarter now around this?
It’s definitely less hope. Definitely much less hope, because I know that this cancer will take my life. I don’t know if that will be in three months, it probably won’t be in three months because I’m feeling too good right now for it to be three months, but it could be six months or it could be two years. If I get very, very, very lucky maybe four years. It’s kind of this weird no-man’s land of how do you live if you don’t know if you have six months or four years. It all just feels very strained. It’s like readjusting to this new sense of not knowing how to deal with the future.
It’s amazing because this was one of my fears when I was very first diagnosed with the eye tumor. One of my biggest fears was dying under the care of my husband, who’s a nice guy. I didn’t know what was wrong at the time but I knew something wasn’t right, and it was so scary to me to die under that care. As much as I still don’t want to die, it feels much better to die in this environment where I have love and this fits, it’s right and it works.
I’m a little out with the doctors. It almost is like a don’t ask don’t tell, but I think they must have figured it out. She comes with me to all the appointments. Actually when I very first got the diagnosis she didn’t come, She did not come to the first few appointments and part of that was because we were nine months into a relationship. I think she was in a panic and it was a hard time for both of us to deal with. I ended up taking a friend with me and one of my daughters to the first appointment. I did the second actually treatment appointment I went by myself, traveled to Philadelphia by myself.
At the time she said she had to work and whatever and whatever, but now I think she can kind of admit that it was just too big and too scary for a nine month relationship. What do you do with this? Now we are going and when I’m in the hospital overnight she sits in the hospital bed with me and we watch TV or whatever and I’ve gotten her not to get all jumpy when the nurses come in. It’s okay, it’s not like we’re fondling each other. We’re just sitting in a comfortable bed together and no one has batted an eye. It hasn’t really come up, they just speak to her as though she is the person there with me. It’s sort of a no-talking land at this point, it’s not been super obvious.
It doesn’t bother me only because this is in large part kind of her … She and I come from sort of different generations of out-ness. She’s been out since she was in her 20s and she’s lived through, and I’ve seen this actually with some of my other friends who’ve come out later in life, that we’re a little bit less afraid. I think it has to do with past experience. I have never been treated badly, I’ve never been treated badly by a doctor. I haven’t had friends give me a hard time, I haven’t had family give me a hard time. I haven’t had people in public harass me. She’s had all those things happen.
I think some of that space that we live in is her fear of doctors kicking her out because she is my partner, or treating us badly, treating me badly because we’re gay. I don’t personally have that same fear, but I know she has it much more. We kind of find a space in between there, if that makes sense.
I think nurses and doctors treated us pretty warmly. There was one nurse that asked if she was my sister, she and I look enough alike that we could easily be sisters and I think that’s probably the general assumption, that we’re sisters. I said, “No, she’s my girlfriend,” and the nurse kind of giggled a little bit. It’s like it made her slightly uncomfortable. We’re also dealing with a hospital which is literally right in the middle of the gay-borhood so it’s a little different.
I did have an experience once, a few years back a friend of mine, who also happens to be a lesbian although we are not a couple, had gone with me to one of my scans at our local, kind of back-woodsy hospital where we were a little more concerned about being treated badly because we were lesbians. When we were back, at some point she asked my friend, she said, “So are you her sister or her, oh never mind. Whatever you tell me is going to be a lie anyway.” Of course we both laughed knowing that she was clearly on to us although we weren’t a couple. Knowing that she knew and still was very, very friendly.
I haven’t run into anybody being uncomfortable or strange around us. I do suspect that at least one of the doctors, the one that talks to me the most, probably is aware that she’s my girlfriend and not just some, you know. Although it must be confusing because they look at the paperwork and there all my insurance goes through this husband. I’m sure that there are mixed clues there too.
When I had surgery my husband showed up for one of those because he is an imposing middle-aged white man. When you want somebody to kick but at the hospital that’s kind of who you want. It was actually, I think, one of the first times he and my girlfriend had actually met. They sat in the waiting room together and had lunch together while I was in surgery, and kind of sat with me afterwards together for a little while. He drifted away but it was helpful, he being, in general, less emotionally involved was able to listen.
His emotional involvement in that he has children whose mother is in danger, so he’s able to listen, I think with a little more distance than she could and was able to hear news maybe a little more clearly. He does participate, like when I’m researching, we were just researching another treatment and I was able to email him from Philadelphia and say, “I’m freaking out and not able to focus right now, can you please research this for me and get back to me?” He is involved at that level.
To those of you reading this, let me tell you something about living life. Do it now. Explore it now. You don’t know if you’ll get the time. I wake up now every day grateful, for as many things as I’m pissed off about don’t get me wrong, but I’m really, really grateful that my timing was such that I was able … I really considered because of my cancer, not pursuing a relationship because I knew I might die, not pursuing a relationship. A very good friend to me said, “You know, some people might be so shallow as to not go out with you because you might die and other people will be able to get over that.”
It has made such a huge, huge difference that I was able to just not let the cancer stop me from going and doing that exploration and finding what would truly, probably one of the most important things I’ve learned about myself and one of the most beautiful experiences that I’ve had as an adult, actually as a person, as a human. I’m just so incredibly glad that I kept pursuing that.
If you’re on the fence, if you’re wondering, “Am I attracted to women? Should I pursue this?” “Am I attracted to men and I’m a man?” Some of it is about, I think it’s about not stopping living. It could be that there’s any number of really important things to you when you get diagnosed with cancer and some people that I’ve seen take that opportunity and they say, “Okay, I’m going to go do these things that I didn’t do because I may not have the opportunity.” I think some people just kind of withdraw and say, “I’m just going to try to survive,” just holding on and trying to survive.
That cancer doesn’t get to stop all these other parts of your life. It might get to be the biggest thing and it might get to be the most important thing, but it doesn’t get to be the only thing. That you’re still a human. You’re still an absolutely, vitally important human who needs love and spiritual connection, and mine was entertainment and meaning. You need all of these things just like you did before you had cancer. That pursuing relationships, relationships are so important, that pursuing a relationship through cancer even though it can be hard and there are barriers, but it’s still so worth it. It’s so important, even when it’s hard and maybe especially when it’s hard. I guess it’s that.
I no longer do things which I don’t feel like doing, to a very large degree. When people want me to volunteer for stuff, I say no. Unless I want to, unless it’s something that I truly, truly want to do. Apropos the book, I said yes to this but there are plenty of things that I just say no to. The PTO, there are plenty of moms out there without cancer who can take care of the PTO, so I feel like I can let that go.
I come at it from this particular really unique perspective. I want to say, it is truly the me I want it to reach. It’s the me that’s wondering, “What do I do with this cancer thing and potentially my LGBT issues?” One of the things about coming out this late is that you sort of feel like you’re the only person this has ever happened to. I’m certainly the only person in my circle of friends that’s come out as a lesbian after being married for over a decade. I know people look askance at it and I’m sure people are confused by it. They’re usually very nice about it and most have been very understanding.
For me I sort of felt like I was the only one in the whole world. Then to be a lesbian with cancer? I’m not the only one of those I know, but the only ones I know are on the internet. I just feel like it’s so helpful to see yourself and these are issues that people tend to be quiet about cancer. They tend not to want to talk about it sometimes because it upsets people. People tend to be quiet about their LGBT issues because they upset people. I guess I feel like I can be a little noisier about at least the LGBT issues because the cancer gives me cover.
Coming out to the parents of the kids at my kid’s school, I felt like, I’m in a rural area where I think there was some possibility that my kids were going to hear nasty things at school about how your mom’s going to Hell or whatever. I sort of felt like the cancer gave me cover to say, “You know what, don’t pick on my kids, their mom has cancer. Just leave them alone.” That it almost put me in a better position to come out because maybe people would not harass them as much. They’ve been awesome, everybody’s been really truly supportive and kind and wonderful in ways that I did not expect. Maybe those fears were unfounded.
Several of them I didn’t expect. When I came out to the school moms, and I basically only came out to them because I felt like their children spend the night at my house sometimes and they see me posting things on Facebook about my girlfriend, who I didn’t always call my girlfriend but I kind of did, that they were going to want to know. I came out and explained the entire situation to them and as opposed to just getting, “That’s okay,” I got, “Wow, I really admire the two of you,” meaning me and my husband, “for co-parenting the kids and getting along through that.” I’m like, that’s nice. I think what I didn’t expect was they weren’t just like, “Okay, whatever.” They came up with complimentary things to say about the situation, positive things that they saw.
One of them said, “I’m so glad for you that you found someone you can truly love. Not everybody is that lucky.” I’m like, “Wow.” They really understood it in a way I didn’t expect them to understand it. They may be gossiping and tittering about it behind my back, which is fine with me, but at least the public face I got was a full support. When I came out to the 82 year old man at church that I’ve known for some number of years, his response too. He said, “If you were afraid we weren’t going to support you because of this, well just put that out of your mind.” I thought, “Oh my gosh.”
It was really this kind of overwhelming support that I received as opposed to, what I did get in one case which was, “Yeah, this is all a little weird but we’ll go along with it.” Which was more what I expected. I was really surprised by that kind of overwhelming, powerful support.
In my case some of this is made easier by the fact that I will remain legally married. Then that takes care of my insurance through the end, it takes care of the children’s legal status with their dad. What is unique is that there will be some funds that I will need to funnel out of my bank account because of the way my will is currently set up because I do want some of my personal money to go to my partner. It leaves me without the ability to financially bind with her in any way because of the legal marriage that owns my assets. For example, she’s about to buy a house, we would love to buy a house together but we just can’t because of the legal ramifications.
Then in terms of end-stage too, as I’ve been talking about it, I have a wonderful babysitter who will, in many ways, take over the role of mom in my house when I’m gone. I’ve known her for a long time, she made me this promise years ago. She’s amazing, she’s an older woman. She and I have started talking about, how do we involve my partner in the children’s lives when I’m no longer here. I don’t believe my husband will give her any grief over this. I don’t think there will be a problem there, but you do still worry a little bit. What are the legal ramifications of basically not being married to the person who I would like to be in charge of those legal issues.
I think he’ll do okay but it still is a little bit unnerving. Making sure that the children have access to her because they have a bond, they call her their half-mom. They’ve got this half-mom, it’s complicated by the fact that she and I live about 90 miles about, because of the children. I can’t really uproot the children away from their dad, it’s hard for her to get a different job so we’re going to kind of live in this distance space as well. Making sure that she does have access to the children.
Also that, and it may be a crazy thing, but like the family heirlooms and stuff. The things that my husband is not going to care about because he doesn’t care about those sorts of things, making sure that my children do receive the family heirlooms that are the furniture, the jewelry, the things that are there. Figuring out how to place those things into custody in a way that when they’re old enough they can have them. That’s a kind of unique concern.