Mar
18

Lesbian Cancer Survivors Talk

By on Wednesday, March 18th, 2009

Dr. Ronit Elk,  psychologist and out Lesbian, talks with three women about their survivorship experience from their perspective as lesbians, talking about issues like some of the discrimination by health professionals, some of the difficulties that lesbian women may experience in terms of insurance; other things like finding support and where we can find it and maybe have new ways to generate support. Another issue  is taking responsibility for our own health and well-being; and finally, becoming advocates for ourselves and for our community, because that way we can just broaden the assistance to so many people.  Marie is a 42-year-old breast cancer survivor. She is un-partnered, and she doesn’t have children. Marie, were you diagnosed in 2001? Marie:Yes, I was. Actually I was diagnosed four days before September 11th. Dr. Ronit Elk: Oh, boy! That must have been tough. Marie: Yeah, what a week, huh? Dr. Ronit Elk: Oh, what a week! Marie: [laughs] Dr. Ronit Elk: You had two months of diagnostic testing, and for some reason it was sort of difficult to diagnose this, but when they finally did, you had–let me tell you what I think, and then you just tell me if this is correct or not. Marie:OK. Dr. Ronit Elk: You had stage III breast cancer. You had a mastectomy, a lymph node dissection, then you had reconstructive surgery, which I’d like to touch on later, if you don’t mind. Marie: No, that’s a correction. I had planned to have reconstructive surgery–Dr. Ronit Elk: Oh, I see. Marie: –but I had to have it delayed. Dr. Ronit Elk: So you had a mastectomy? Marie: Yes. Dr. Ronit Elk: And lymph node dissection? Marie: Yes. Dr. Ronit Elk: And radiation and chemotherapy. What I call the whole caboodle! Marie: I had the whole caboodle! Dr. Ronit Elk: [laughs] Well, welcome to the program, Marie. Marie:All right. It’s great to be here. Dr. Ronit Elk: Great to have you. Deane is a 57-year-old survivor from California. Welcome, Deane. Deane: Thank you. Dr. Ronit Elk: You live with your partner and your partner’s teenaged daughter, and you yourself have two adult children. Is that correct? Deane: That’s right. Dr. Ronit Elk: OK. You were diagnosed withchronic lymphocytic leukemia, I mean just in January of this year. You had a routine physical and blood work and your doc referred you to the hematologist– Deane: Right.Dr. Ronit Elk: –which is, I mean, incredible that they found it. You haven’t received any treatments, because you haven’t developed any symptoms, but of course your doc is monitoring you carefully. Deane: Right. Dr. Ronit Elk: One of the things that I believe you’ve been doing is making an effort to exercise and watch your diet and stress, just generally maintaining your good health. Deane: Right. Dr. Ronit Elk: Thank you so much for joining us today, Deane. Deane: Oh, you’re so welcome. Dr. Ronit Elk: Our last guest is Mel, and Mel is from Missouri. She is 43 years old, and she lives with her partner. Mel doesn’t have kids. You were diagnosed with breast cancer in the fall of 1996. Is that correct? Mel: That’s correct. Dr. Ronit Elk: OK, welcome Mel. Mel: Thank you. Dr. Ronit Elk: You had no health insurance, which I’m sure had major consequences on your life, so we will be touching on that. But you say you went to a clinic, where you had some really difficult experiences with doctors, including the surgeons who performed the biopsy and confirmed your diagnosis. Mel: That’s correct. Dr. Ronit Elk: Fortunately, you found another program in Maryland that was dedicated to breast and ovarian cancer, and you went there for treatment, and you’ve been very pleased with your care there and I read that you really like your oncologist. Mel: Well, actually the doctors were all part of the same program. Dr. Ronit Elk: OK. Mel: It just took a while for me to find a doctor. Dr. Ronit Elk: But when you did, then it was a good program. Mel: It was. Yes. Dr. Ronit Elk:And you had a mastectomy and an oophorectomy, which is where the ovaries are removed, and chemo. Mel: Correct. Dr. Ronit Elk: Which is a rather large blow, because you started menopause and all of a sudden your body had such huge changes. Mel:That’s correct. Dr. Ronit Elk: And like Deane, you’ve been focusing on leading a healthy lifestyle. I want to thank you very much for being with us, Mel. Mel: Thank you. Dr. Ronit Elk: OK, so just an extra second. I’m really thrilled to have all three of you here with us. We’ve got a lot to cover today, so why don’t we just get started. Is that OK with everyone? Guests: Sure! Absolutely!

Getting Quality Health Care Without Discrimination

Dr. Ronit Elk: OK, so the first thing that I’d like to talk about, or ask you to talk about, is one of the concerns that many women in the GLBT community have, is how can we get state-of-the-art medical care without being concerned about somebody discriminating or being abusive. There are many, many women who are not “out” to their own docs because they’re afraid of discrimination. At the same time, there are other–there seems to be some sort of ignorance about gay issues among health professionals. And let’s be honest, there is some very real prejudice, and so we can end up with having poor care and poor health outcomes–you know, not even talking about all our emotional difficulties for us, our partners, etc. I’d like to ask if this has been an issue for any of you, either the concern about it or if you actually experienced it? Mel, how about you? Mel: I think I experienced it with the first surgeon, who actually did the biopsy. I’m not even so sure if it was blatant homophobia as much as it was just ignorance, that when I came out of surgery– and I had made it really clear with the surgeon that this is my family, this is what my family looks like. When I come out of surgery, this is who you’ll be talking to. Dr. Ronit Elk: Uh-huh. Mel: And it was a long time–he never came and talked to my family, and they actually had to seek out the recovery room nurse– Dr. Ronit Elk: Yeah. Mel: –to find out what my status was, and that’s how they found out I was out of surgery. Dr. Ronit Elk: So, your partner, you mean? Mel: Ex-partner, but very much my life partner at the time. Dr. Ronit Elk: Yeah. Mel: And it was a friend, and there were two friends waiting for me, and they had to seek out the information. So that was hard, that I would imagine if I was a straight woman and I had my family in the waiting room that this person probably would have found them, but maybe I’m wrong. Dr. Ronit Elk: Hmm. Mel:That was my only really hard experience. Everyone else, all my other health practitioners that I worked with really got that this is what my family looked like and were very respectful, and I felt very fortunate in that regard. Dr. Ronit Elk: Well, I’m pleased that it worked out that way. When the doctor met finally with your partner, or your ex-partner, and your friends and so on, how was–in other words, once you recognized, OK these are the people, or they were brought to them, did he talk to them? Mel: The surgeon who did the biopsy? Dr. Ronit Elk: Yeah. Mel: He never did talk to them. He had left. Dr. Ronit Elk: So, it was the nurses, or–? Mel: Yeah. It was the nurses, the recovery room nurses.Dr. Ronit Elk: Right. Mel: As far as I can remember, in my fog. Dr. Ronit Elk: [laughs] Mel:They were fine. Dr. Ronit Elk: Thanks. Marie? Anything to add? Marie: I had excellent experience. And actually, although I am not with somebody now, I was dating somebody, and she came to all my doctors’ appointments because she came to all my chemo treatments. So the doctors and the nurses got to know my girlfriend at that time. Because of the stress of cancer on a relationship, we are no longer together, but I completely understand that there is discrimination, and in the support group that I help run for lesbians here in Austin. We definitely hear about those kinds of problems, and it’s definitely an issue. It gets back, I think, a little bit to kind of being in charge of your own health care and maybe putting your foot down and saying, “You know, this isn’t acceptable behavior.” And if you can change doctors, change doctors. Other than that, maybe diversity training for the health profession so that they are more open and know how to talk to people in the gay and lesbian community, to make them feel more relaxed about, you know, being more open with them. Dr. Ronit Elk: Marie, I appreciate you sharing that. I would like to come back to the stress of the break-up in a little while, if you don’t mind. Marie: Sure. No problem. Dr. Ronit Elk: But I just want to acknowledge that, because I think that that is another one of our big issues. But you said that in the support group that you run in Austin that there are people reporting–what kinds of problems are they reporting? I mean, is it something like what Mel described? Marie: Yes. That’s the primary issue, is them not recognizing the other person as family and not only not giving status, but not maybe allowing them to come into the recovery room at all and talk to their other half. And so that’s been an issue, and just being present in the appointment, some doctors have said, “Well, these people aren’t family.” And they’re like, [laughing] “They are my family, and you can say whatever you want in front of them.” You know, it just seems like it adds stress to an already very stressful situation, and that’s unfortunate. Dr. Ronit Elk: That really is unfortunate. Have you come across anybody who has sort of not come out to the docs because of this or because of perceived–Marie: I think about a third of the women we’ve talked to are not necessarily out to their doctors, and they wind up taking family with them, like sisters or their parents, rather than their partner because of their own issues with coming out. All I can say is, you know, part of that lies with the person who is the patient, and part of that lies with the health professional. And so, on both sides of the issue, you’ve got to have a slightly different behavior so that they can come closer together. Dr. Ronit Elk: Yeah. Marie: I think that’s why the statistics are so poor on our community in general, because people don’t come out and say, “Hey, I’m gay.” And you know, I think this needs to be looked at because I would like to know more about the statistics of cancer in the gay community. Dr. Ronit Elk: Yeah, we definitely need to know much more about that. Marie: Talking and being open would help that situation. Dr. Ronit Elk: Yeah, I appreciate that. I’d like to come back in a second and ask you if–I mean, you’re talking about it being from both perspectives. Do you feel that it’s possible that some women are so intimidated by the docs or that the experience will be so unpleasant, not only from bringing somebody into the waiting room with you or to appointments or something, but what about, for example, on the forms where you fill in: “Are you married, are you single, divorced,” and so on? How many sexual partners have you had? Usually it’s referring directly to men with women. And maybe some of the women–the gay women–are, you know, uncomfortable about saying that, in case the doc will– Marie: Especially with older women– Dr. Ronit Elk: Uh-huh. [yes] Marie: –who, when they were coming out, it wasn’t a very free society in terms of being gay. Dr. Ronit Elk: No kidding! Marie: And since cancer affects a lot more people over 50 than people less than 50, that’s where I think some of the issue is, is just that generation of women– Dr. Ronit Elk: Good point! Marie: –have been taught not to talk about it and stay closeted. I have friends that are like teachers, and they would never come out, under any circumstance, because there is too great of a risk of losing their job. Dr. Ronit Elk: Wow. You mean they wouldn’t even come out in terms of to the doc. Marie: Correct. Dr. Ronit Elk: OK. So, I think that that’s a very good point that you talked about, because of the age. Women over 50–it is a different generation, just like it is for people who are younger than us. So, wow! I mean, I must say, I hadn’t thought about that, and it is concerning because some of those things are directly related to how you are going to get treated or risk factors. For example, a whole lot of risk factors from breast cancer I would imagine– well, there are higher risk factors for lesbian women in terms of not having had children, possibly, not all of us. A lot of us have had children, but not having had children or not having breastfed. Marie: Or just not having a regular mammogram. We don’t. Dr. Ronit Elk: Oh, yeah. Well, that. Marie: We don’t seem to use the health care, some of the health care we have. That’s disappointing because, I can tell you, I would never want anybody to go through what I’ve been through. It’s not been as bad as I thought it would be– Dr. Ronit Elk: You mean with the mastectomy and the lymphectomy and the radiation and the chemo, it hasn’t been as bad? Marie: The chemo! I would never wish anybody to go through that experience, and if you can do anything to be proactive about your health and prevent that and minimize the treatment, you will be much, much better off. It just takes so much out of you. Dr. Ronit Elk: Oh, absolutely!

Finding and Creating Support for Lesbian Survivors

Dr. Ronit Elk: Well, thanks. Those are really good points. And I’m glad you’re running–is it a support group or–? Marie: Yes. What it is is a lesbian cancer support group. We take the patients, the caregivers, anybody who feels they want to talk in the group. We started it in–mid-October was the first meeting. We have a meeting every two weeks, and we have the support of the American Cancer Society here in Austin, and they’ve been tremendous. And we have a committee of lesbians who talk about what we want to do next. So we have three licensed therapists on the committee. Dr. Ronit Elk: Uh-huh.Marie: We have two nurses, two other health professionals, but not people who are medically trained, and there’s somebody like me [laughing] who’s a chemical engineer, just as a survivor. Dr. Ronit Elk: [laughing] That’s a very important qualification. Marie:So we have a strong group of women who are committed to making this thing happen, and it’s been very, very good. We’ve probably had about a dozen women come through the support group already, so we’re all very excited about it. Dr. Ronit Elk: So, the site that you have, the Web site? Marie: Yes. Dr. Ronit Elk: Can anybody access that? Why don’t you give the address? Just sort of go a bit slower so everybody can get it. Marie: I know that’s really long [laughs], and I don’t know how to shorten it–but if you go to Yahoo and you select “group” on their Web page, and you just search for “lesbian,” “Austin” and cancer,” our group will pop up. Dr. Ronit Elk: OK, but your group is specifically for “in Austin.” Marie: Right now, but the information on there is nationwide.Dr. Ronit Elk: OK. Marie: What I do is I put all kinds of information to improve emotional health, physical health–like how to find a clinical trial, how to find free airline information to get to a clinical trial, how to find free hotel, other gay health Web sites that are of interest, and then, you know, critical–like the National Cancer Institute, American Cancer Society, groups that would be critical so people can one-stop shop. They come to that Web site and they can find hopefully most of the things that they need. I also have a chat room as part of the Web site. Dr. Ronit Elk: Oh, that’s excellent. Marie: My cousin designed this for me as a gift to me, and she’s straight. She just did it out of the generosity of her heart. And I would like to see this grow, because I would like to see lesbians survive with a higher quality of life. Mel: It’s so great to hear about the support group in Austin. I lived there for a year. Dr. Ronit Elk: Yeah. This is Mel, right? Mel: This is Mel. Sorry. And I couldn’t find a way to connect with other lesbians who had had cancer, and it was really hard to be in a new community. I went there to be with my partner, and I was kind of newly out of being diagnosed–well, about a year and a half, still kind of new to me, and it was hard to be in a new community and have had gone through cancer and not be able to connect with others who could relate to it. So it’s really exciting to know that there’s a group that’s meeting. Marie: Yeah, actually. We’re in the gay newspaper for the state of Texas. So we’re hopeful that that will also spread the news. Mel: Wow. This is Mel again. I’m now a part of a support group here in St. Louis, and it’s–we were meeting fairly regularly, but now it seems like maybe we’re not needing to meet as regularly right now. But I think we all know that if we needed to be there for each other, we would be. We don’t have a Web site, but we do have an 800 number. Marie: The fact that you guys are coming together makes your survivor- ability so much better. Mel: For sure. Marie: And that is exactly the goal, so I’m glad that there’s something for you there.Dr. Ronit Elk: Here is the wonderful part that comes out of, I think, people who are cancer survivors or caregivers. I do want to also say that the American Cancer Society Cancer Survivors Network, which is what we’re on now–you go to the American Cancer Society’s Web site, which is www.cancer.org, and then you go to the Cancer Survivors Network, and create chat groups. So if we want to, we can create our own lesbian cancer survivors support group. It is of no cost at all, and then people can talk from all over the country there, and you can also post your own area-specific–like the Austin one or wherever else there is a support. Marie: That would be nice! Dr. Ronit Elk: So you can do it. You can do it anytime you want to. All it means is that somebody has to say, “Hey, let’s do it.” Go online and create it. So, actually the Cancer Survivors Network is really designed to be used by people however they want to. The breast cancer survivors have actually developed their own huge group, and I think that the lesbian community can really use that. You don’t have to be out. You don’t have to let anybody know your real name if you don’t want to, there’s lots and lots of opportunities. It’s just a way for reaching people, because as Mel said how hard it was for her when she was in Austin. OK, the computer isn’t the same as sitting opposite somebody, you know, who can hug you or touch you or something, but hey, it’s support, and it’s been shown to be very helpful support. Mel: When I was diagnosed in ’96–this is Mel. I used the computer a lot and I found a great site that’s no longer in existence, but it was really helpful for me at the time. Just, you know, to hear stories, and this is what this person did and this is what this person–you know, just to add to my confusion. [laughter] Mel: But, yeah. I think the Web is an excellent tool. Marie:MarieYeah. I’ve had actually a woman email me through the Cancer Survivors Network because she found my Web site, and she is in the next town over–in Round Rock–from Austin and wanted to get together. I’ve had people email me questions. I had a lesbian email me a really heartfelt letter that basically said: “I’m not a patient, but my mother is, and I just want to understand all the things they are doing to her body.” Dr. Ronit Elk: You see, so those are some of the ways that we can help each other. So anyway, anybody who wants to go to the Cancer Survivors Network–hint hint–and start your little own group, I think that would be just wonderful. I don’t want to cut anybody off, but I definitely want to give Deane a chance. Deane: [laughs]Dr. Ronit Elk: Are you there? Deane: [laughing] Yes. And I’m not usually so quiet. Dr. Ronit Elk: So what do you think? Deane: I’m fascinated. With respect to medical care, I’m very fortunate to live in San Francisco. Dr. Ronit Elk: Ah. Deane: Where there is a much greater awareness and acceptance of gays, lesbians, anyone. And when I basically, in a state of shock, went to my first visit with my oncologist, my partner went with me. And we both thought, well, there was just no question in our minds that that was the right thing to do, but it also made it pretty clear from the beginning that we were sort of a team in this, and so, you know, there was no issue. Would I have felt differently if I’d live in some place else? Maybe. I’m so glad to hear that things are changing. But I do think that there are issues, and I was really interested in Marie’s mention of diversity training. I work for the YMCA, and as open as we believe we are and as diverse, and so on, in this area, we’ve done a lot of diversity training and have found that it’s really extremely helpful and it’s very necessary in any field, wherever you live. And so I would strongly encourage diversity training within the medical profession or with any profession, because that is the way you raise people’s consciousness. Often, I mean, I’m the eternal optimist, but I do believe, by and large, people don’t mean to slight other people’s families or disrespect their partners or whatever. Now, some people do, but by and large I don’t think that’s the case. I just think there’s a huge unawareness. Mel: Uh-huh. [yes] Deane: And anything we can do to make people within the medical profession more aware that they need to involve and respect whatever people tell them are their families, or encourage them to share who their families are so that can happen. That’s extremely important, because people don’t survive well or have high quality life with whatever they’re dealing with, if there is that added stress of “I can’t say who my family is” or “I can’t take my partner” or “I can’t show up with whomever.” So– Marie: I agree. That having the diversity training is something. I actually queried my own physicians about that, and they gave me some really good ideas on how to approach that here in Austin. Deane: That’s great. I think I’ll look into that, too. Dr. Ronit Elk: Oh, that’s excellent. Wow. We’ve got so much to talk about and so little time. We may have to have another one of these. Guests:Yeah! Yes. Good idea! [laughter]

Lesbian Relationships Enduring Cancer

Dr. Ronit Elk: Can we touch on another issue, I think, that somebody brought up? I think it was Marie. One of the things that any illness can–or any difficult situation can put tremendous pressure on a family or on a relationship. I have read somewhere, and I’m terribly sorry I didn’t bring the source with me, that in a lot of lesbian relationships the stress of whatever one is going through often leads to break-ups. I just want to ask your opinion about, in terms of your experiences with this, or your opinions on it, or your suggestions. Why don’t we start with Deane? Deane: I don’t know that I have observed a greater rate of break-up among lesbians than among any other couples. I think that cancer puts a tremendous strain on a relationship, and my observation, my personal experience over almost the last year, is that what it often comes down to is how well do you communicate and how well can you share what your needs are, because it does put a huge strain. I just think, like so many things, it comes down to communication, and so we’ve tried to really look at how do we communicate, and I have personally had to take responsibility for- -I’m one to say, “Oh, I’m fine. Everything’s great.” And you know, “I’m just moving right along with my life,” and “Don’t worry about me.” And that’s not helpful to another person [laughs] who really does need to be a part of how you’re really feeling, and can you at least say something when you’re feeling a little down about this? Dr. Ronit Elk: So, especially in your situation where I’m sure, you know–you said you were feeling your lymph nodes. Deane: Yeah. It’s just that any little thing is scary, because you don’t know. It’s having something that’s very much there, and the oncologist is very clear that it’s there, but it’s not causing problems. So it’s sort of like being sent to your room to await further punishment. Dr. Ronit Elk: Mmm. Deane: And you don’t know when. [laughs] So you have to be proactive, and I have to find–I have to force myself sometimes to be uncharacteristically inclusive and allow other people to say, “You know, maybe you should just ask a question or two, and–” And I think that has a lot to do with whether relationships withstand the strain. Dr. Ronit Elk: Thanks for sharing from your experience. Marie, yours was slightly different, right? Marie: Yes, well we had the challenge of being a new relationship. We got together in March of that year, and I was diagnosed in early September. Dr. Ronit Elk: Mmm. Marie: So we didn’t have what most relationships would have, a “honeymoon,” say, so to speak. I mean, it went from honeymoon to incredibly serious. Dr. Ronit Elk: Mmm. Marie: And she was a lot younger than me. I was 42, and she was 27, and I think that was a lot of it, also. Just having to deal with life and death issues at that age are different when you’re 40 and talking about life and death. It was just–she did the best that she could. Like I said, she came to my chemo appointments and she- -I remember her trying to come to my house and help me around the house when I was on the Adriamycin/Cytoxan. That’s the chemo that makes your hair fall out–and she would just cry. And she cried and cried and said I was going to die, and she was reading all these statistics and believing them, and I’m like– Mel: How helpful is that? Marie: –you know, you can’t do that. You can’t do that. You have to say I’m going to be the outlier. [laughs] You know, I’m not going to be just what everybody predicts. I’m going to survive, and there are just no two ways about it. Dr. Ronit Elk: So, she was afraid. Marie: She was very afraid. Mel: And projecting that out. Marie: Yes. And over time that got to me, and I said, “I can barely keep myself together. I don’t know that I have enough to keep you together, as well.” And that’s when things really started to fall apart, and that was very, very hard. Dr. Ronit Elk: That’s what I was going to say; that it’s really very, very difficult just under normal circumstances, but you really just had so much! I mean, with the radiation and the chemo and the–it’s not just mastectomy on its own with radiation. OK, one thing, but, you know, radiation and chemo and the mastectomy and– Marie: Yeah, all in about eight or nine months. So, I mean, when we broke up, I was just beginning radiation. I had a lumpectomy and they did the lymph node dissection. Dr. Ronit Elk: Uh-huh. [yes] Marie: And then two weeks after we got the biopsy results, they said, “No, we definitely have to take the entire breast.” Went back, you know, about two weeks to the day I had the lumpectomy, had that surgery, and then two and a half weeks after that, started radiation, and then had all this stress of the break-up, all right there together. Deane: Wow. Marie: [laughs] So life is like easier now. Dr. Ronit Elk: So, in fact, can we use that as a transition to talk about support and relationships, because again, Marie, you said that in your experience you were much more supported by the straight community. In fact, why don’t you tell us about your colleagues? Marie: A lot of my coworkers just really came together. What I had done was when I was diagnosed, I got the news on a Friday afternoon, and I went home and I thought about it. Monday morning I had already told my boss that day, because he knew something was going on. I told him I would tell him before I left. And he sent an email, a company-wide email–and I was a manager, so a lot of people knew me, and people just came out of the woodwork. I had three women, every three weeks they would come to my house the day I had chemo, and they would fill my refrigerator full of food. Dr. Ronit Elk: Mmm! Marie: You can’t put a value on that–three straight women. They would just come to the house. I had people clean my yard for me, twice, because I have a fairly large home. They cleaned my house a couple of times. And these were things that were organized by friends, because I don’t have any family in Austin and just–I don’t think I ever would have learned how much love there could be in the world until this all happened. Because I was not somebody who would ask for help, and these people just– Dr. Ronit Elk: You were like Deane, huh? Marie: Yeah. You know, Natalie took me to the Adriamycin/Cytoxan chemos, but when I had the TAXOL chemo, which is weekly for 12 weeks in a row, I knew that that would be too much for Natalie, so I asked different people to take me. And every week I had a different person. I mean, I had my dance card filled, so to speak, long before I had to worry about whether I was not going to have somebody take me. Deane: Wow. Marie: Again, you just can’t put a value on that. And when I got well enough and got past the radiation and had healed, I have a swimming pool at my house, and I had a party to thank all the people who had helped me. Dr. Ronit Elk: How nice! Marie: There were 75 people there, and there easily could have been a hundred. Dr. Ronit Elk: Wow! Marie: Because all of those people did something. Somebody came by and took out my garbage when I was too weak to do it myself, and my garage door had broken, and people came by and went to the grocery store for me or, you know, did things like that. I am eternally, eternally grateful for all of their help. Family, I had 40 people on my Race for the Cure team, I had 32 on the FEARS team. I would say, most of the people that helped me, I’d say about 70 percent of them are straight. Dr. Ronit Elk: And one of the other things that you talked about is that you were out in your work. I guess you have a very senior position, but you were out and they did know about you being gay. Marie: Yes, and nobody ever gave me–you know, I took my partner to the Christmas party. Dr. Ronit Elk: This is cool. Marie: And I took her to the IPO party. The company was a start-up. So, yes, they knew. Everybody knew. It didn’t keep guys from asking me out. [laughs] Dr. Ronit Elk: What did you say? Marie:That didn’t stop some guys from asking me out, and I’m like, “No, thanks.” Dr. Ronit Elk:You know, you said you had a very nice head when you were bald. Marie: Yes, that’s what people tell me. Dr. Ronit Elk: Do you think that had something to do with it? Marie:They said I had a nice round head. I actually went as Uncle Fester for Halloween. Dr. Ronit Elk: [laughs] Marie: Because I could! And people would look at me and they’d go, “Wait a minute. That’s your head! That’s not like a skin cap or anything.” [laughs] And I’m like, “Yeah. This is what I look at every night when you guys aren’t around.” Because I didn’t wear a wig. I just wore like a rayon head cover, you know. Dr. Ronit Elk: Yeah.Marie: Very–more modern-looking, and not necessarily wearing a lot of turbans. Dr. Ronit Elk: Wow. That’s incredible. And Deane, in terms of your support, your partner was with you? Deane: Yes. Dr. Ronit Elk: And stayed, and since you were able to explain or at least express what you needed, you felt that that was sufficient or OK, or– Deane:You mean when I went to the oncologist? Dr. Ronit Elk: Well, whatever. I mean, we’re just talking about getting support and how important that is. Deane: Oh, yeah. Dr. Ronit Elk: I mean, Marie’s experience is obviously very different. Deane: Yes. I have not had the extreme treatment and the strain of all of that, but yes. I do get support, and if I don’t, it’s my own fault [laughs], because I– Dr. Ronit Elk: You mean you don’t express?Deane: I minimize how I’m feeling. Dr. Ronit Elk: Oh. Deane: And right now, it’s how I feel emotionally and not how I feel physically. Dr. Ronit Elk: Right. Deane: And that’s very hard to express, hard for me to express and to ask for that kind of help. So that’s a growth experience [laughs]. That’s why I say, if I don’t get support, it’s because I don’t speak up and say, “You know, I’ve been feeling really nervous and scared about this, this week.” That’s hard for me to do. So if I do say that, I certainly do. And my partner and my friends who know have been very, very supportive and very, you know–if they come across information, they share it. If they–they’ve been very supportive of my attempts to look at different ways to support a really healthy lifestyle and to reduce stress. That’s the one thing the oncologist said to me three times, which my partner does remind me of, is the need to reduce stress. And I tend to pile on more things than one can do [laughter] and so I have sought out other ways to do that. One that’s been very helpful is I took a mindfulness-based stress reduction class, and that is a particular program. That was extremely helpful. It made me stop and look at learning some meditation, learning to just stop and reflect in a way that I simply wasn’t accustomed to doing, and that’s been very helpful. And the people in my life, both with whom I have shared this news–which isn’t everyone, because there’s no manifestation at this point, and I have chosen not to tell everyone–but the people who I have shared it with have been very supportive and very encouraging and, “Gosh, have you looked at this Web site? It has some great places where there is this kind of meditation, and you mentioned this.” You know, so I have had a lot of support from both the gay and straight community. Dr. Ronit Elk: So, for you, the support has come both from your partner, your friends and also from inside yourself, in terms of seeking out other ways to help you be calm, which is something a lot of us have difficulty in achieving, and you have really gone out of your way to try and get that.Deane: I have tried, and I should mention that my family has been very supportive, the family besides my partner. Dr. Ronit Elk: Your kids? Deane: My kids have been great, especially my daughter. She has just been amazing. She went and ran a marathon in Hawaii to raise money for lymphoma/leukemia, and that wasn’t entirely just for me, but you know, she really just has put her heart into finding support and offering support and doing it in a way that, as Marie said, you can’t put a price on–on people coming forth like that. Dr. Ronit Elk: You’re lucky to have a wonderful daughter, and she is lucky to have a wonderful mom. Deane: Well, we think so. Dr. Ronit Elk: [laughs] Mel? Mel: I’m here. Dr. Ronit Elk: What do you think about support? Mel: I was really fortunate. I didn’t have a lover at the time. I was not in my hometown or state when I was diagnosed and chose to stay where I was because I got into such an excellent health program. But my ex-lover, who is very much my life partner, she at first said that she couldn’t come, and then 15 minutes later called back and said, “I’ll be there in two days.” And I was really fortunate at the time. A distant relative had left me a small amount of money, and I had put it away and said, “In six months I’ll decide what to do with this,” and six months later I was diagnosed with cancer. Dr. Ronit Elk: Wow. Mel: I wasn’t alone, ever, I mean, as far as being in a strange town. I found wonderful housing, a house-sitting job, and had cozy places to be while I was doing chemo. I’m kind of in the same way that I’ve heard others say is that it’s not easy for me to say, “This is what I need.” And sometimes when I am needing something and I’m not putting it out there, I end up acting out in negative ways, and I don’t even know that it’s happening, necessarily, until I lose it. Dr. Ronit Elk: Can you give us an example? Mel: Oh, like I won’t be expressing really what I’m needing or feeling, and then I’ll get really crabby– Dr. Ronit Elk: [laughs] Mel: And say things that I don’t really mean. But I’ve really been working on that, and I don’t think it’s such an issue. I think with cancer, things are just really emotional, and it’s new! You know, we weren’t socialized or trained to: “And this is how you act when you’re told you have cancer.” So I think, you know, it’s all new territory for us. My mother had cancer, and so I kind of lived with that fear. But my family, my chosen family, were wonderful and very supportive. I’ve never gone to the doctor alone, and I’m really clear when I do go to see a doctor that this is who my family is and anything that you want to say to me is fine in front of these folks. Mary came into the recovery room after my surgery and stayed there with me until I was wheeled back up to my room. The nurses brought her in a bed to sleep on, and she stayed with me the whole time. Dr. Ronit Elk: Oh, so she was able to stay with you? Mel: She was. They gave me a private room; otherwise I wouldn’t have been able to have that happen. Dr. Ronit Elk: But that’s encouraging, instead of just saying, well, “Only husbands,” or “Only family.” Mel: Exactly. Dr. Ronit Elk: I think that this is very good to hear, Mel and Deane and Marie, because one of the things that I think that other listeners will get from listening to this is, “Oh, they did it, so maybe I can do it,” as opposed to sort of maybe people who are more reticent and who may be more shy or maybe not wanting to let others know, etc. Marie: Yeah. This is Marie. I had the same experience. My girlfriend and I were still together when I had the mastectomy surgery, and they brought in a bed for her to sleep on next to me. Dr. Ronit Elk: Oh! Well, that’s–I think that that’ll be something that many of the listeners will be very encouraged by.

Taking Charge of Your Life and Health

Dr. Ronit Elk: Unfortunately, we only have 15 minutes. I hate this, but let’s talk about one other thing. One of the things that I see that all of you have almost said–it was sort of like it changed your life in some way that you know what’s important and what isn’t. I know that Deane is really trying with the yoga and the decreasing stress and, I mean, just doing different things, or meditation to try and decrease stress. Can we talk a little bit about how your life has changed in terms of you taking responsibility? Who would like to go first? Marie: I can go first. This is Marie. Dr. Ronit Elk: OK, Marie. Marie: I definitely feel like when I talk to people, I tell them that I love them, and I didn’t do that a lot. Dr. Ronit Elk: Mmm. Marie: I mean, you do it to the people like your parents and maybe your brothers and sisters, and maybe, you know, your partner, but I say that to everybody, because it’s more important to me now that those are my last words to the people that I interact with on a regular basis. Dr. Ronit Elk: What do they say to you about that?Marie: Oh, they say they love me back! [laughter] Deane: This is Deane, and that’s just as important. Marie: That’s a great feeling. You know what I mean? That’s healing in itself. And for me, I mean, I’ve done well in my career, but I’m changing that, because I find that I prefer to work more with people rather than with things. I plan to go back to school, and one of the things I actually started doing while I was under the Adriamycin/Cytoxan chemo was I tutored a friend of mine, her son. One of the women who was bringing food over for me, she was like, “Marie,” she goes, “I know you went to MIT, and you have a chemical engineering degree. Can you tutor my son in algebra–I’m sorry, in physics–and he’s in high school.” And I said, “No problem. I can handle physics.” So I started tutoring him. He made an A in the class, A on the final. Mel: Yeah! Marie: And she’s like, “Wow, that’s wonderful.” But I did all that while I was going through all that chemo. It was very rewarding to know that I was helping him prepare for his life, and even though I may not have the patience to teach a whole classroom, it’s just been great. And I have another student now, who I tutor in math and science at the high school level, and she is also doing really well. So stopping and doing those kinds of things has become much more important than how clean the house is. Dr. Ronit Elk: [laughs]Marie: Or that other things are kept in order, because I tend to be a perfectionist and I want everything in order. It’s like, you know, it really just doesn’t matter. I need to do what makes me happy, and I need to keep doing certain things so I keep finding that path that makes me happy. Dr. Ronit Elk: So, prioritizing–life seems to get a different priority. I mean, saying, “I love you,” hugging people, spending time tutoring somebody, taking time to make time for your family, doing something– Marie: Doing the support group, I mean, that’s been a tremendously rewarding experience for me. Just knowing that people come in the group and go, “Wow, this group exists, and I’m so appreciative of it.” And just, I don’t know–it makes you feel like you’ve done something bigger than you.Dr. Ronit Elk: That’s wonderful. Do you want to add something, Mel? Mel: I think that for me it’s been a good practice to not worry so much. I think I used to worry about things, and it doesn’t–I think that what I’ve found is that it doesn’t help. And I find myself saying “I love you” to people more, as well. That’s interesting, that somebody else is also passing those words around. I think my friendships are very precious, and they always have been, and I think there are probably ways in which I probably embrace that more now. Dr. Ronit Elk: That’s really very special. A long time ago, I read a book called Man’s Search for Meaning, which is sort of an old-fashioned kind of title. But it’s written by Viktor Frankl, who was a psychiatrist who was kidnapped, well not kidnapped, but taken by the Nazis to the Holocaust, to the camps because he was a Jew, and literally stripped naked. And his book that he had written grasped in his hand was taken from him, and he learned so much in the Holocaust–unfortunately a terrible way to learn through such suffering, but basically his whole thesis is if we have purpose and meaning in our lives, we have a focus, we have a direction. And it seems like I can hear that from each one of you. Marie:Oh, I agree. Deane: It’s absolutely critical. Marie: You don’t–I mean, you feel maybe when you start working that that’s going to be your purpose, and it’s just so much, can be so much bigger than that. Dr. Ronit Elk: Is this Marie? Marie: Yes. Dr. Ronit Elk: And you’re somebody who went to MIT and got this very fancy degree and– Marie: [laughs]Dr. Ronit Elk: –you got a high position, and so are you saying that that changed, not the position itself, but your focus. Marie: [laughs] Yes. I have been actually tutoring people as far back as when I was in learning calculus myself and tutoring my classmates. So, you know, that always–being a teacher has always been part of things that I do. It just–I’ve had so many people say, “You really should go back and get more education and do something with that.” And you know, it’s like, if I have all this capability, why am I not using it to my fullest to do what I really want to do? I just got locked into being an engineer because it was a safe profession and, you know, there are always engineers around to be hired. But you know, I want to take that chance now to do something more with all the skills I think I have, not just the mathematical and scientific ones. Dr. Ronit Elk: That’s wonderful, and it sounds like Deane is doing something similar. Just because we just have a few minutes left, I really– if anybody else has a funny story, they are more than welcome to do it, but I wanted to ask Marie, even though I know you’ve spoken–maybe more than the others, but you have such a funny thing. [laughing] Could you please tell us about your secret weapon? Marie: My secret weapon? Yes, it’s my fake boob! Dr. Ronit Elk: [laughing] Marie: Just so you get an idea, I’m like a double-D, triple-D. So when I went and got sized for my prosthetic, I mean, I’m looking at this sea of boxes with boobs in them [laughs], and we’re trying to figure out which one looks right, and we’re swapping them all out. It was just so surreal. Well, I got back to work, and I couldn’t wear it for a while until my skin healed from the surgery. So I started wearing it, and people all tell me, “Hey, did you already have that surgery? Gosh, it doesn’t look like it. It looks like you have–” And I’d say, “Well, don’t make me mad because I can whip it out and hit you on the head and put it back in before you know what happened to you.” [laughter] Marie: And just to embarrass guys that I knew, because I knew I could tease them, you know, I’d be with a group of women talking, and one guy would come up, “Hey, Marie. It’s good to see you after your surgery. Gosh, you look really good.” And I said, “Yeah, can you tell which one’s fake and which one’s real?” And they just turn beet red. [laughter] Marie: I got interviewed by the local TV at the “Race for the Cure,” and the lady who interviewed me–and this was on the news, too; I have a tape of this–she says, “Did you have your surgery?” I said, “Yeah. The left one’s fake.” And she goes, “Oh, you can’t tell.” I said, “That’s good. That’s real good.” And so, to me, it’s my secret weapon, because it weighs like seven pounds. [laughter] Deane: Oh, my goodness! Marie: You can hurt somebody! Deane: Wow! [laughter] Marie: So I just tell that to people, just to break the ice because cancer is such a serious topic. I had one guy come up to me, and this is–I don’t know. They’ll probably edit this out. He came up to me at work, and he said, “I notice you lost all your hair.” “Yeah, yeah, yeah, yeah.” “Have you lost it everywhere?” And I knew exactly what he meant. Dr. Ronit Elk: [laughs] Marie: I said, “Yeah. I lost it there, too.” I said, “Do you want to see?” [laughter] Marie: And he just starts laughing and laughing and laughing. But the sad part was both of his parents have died of cancer, and he knew exactly what it was like. Dr. Ronit Elk: Mmm. Marie: Because his mother went through it. I didn’t know that about him until he told me that. So, you know, just trying to keep the humor in it helps. It helps people to tell their story and helps people to feel comfortable about it, and I can’t thank God and all the people I know for all the help they’ve given me. Mel: One of the things that I did that I think is kind of funny on the form where it asked for form of birth control, I put “lesbianism.” [laughter]Dr. Ronit Elk: Excellent! Oh, I love that–although that isn’t quite true anymore. Look how many of us have kids. Oh, but that’s cool. I really want to thank you so much, each one of you. I think that we sort of really got into some topics that perhaps haven’t been discussed so much, certainly not anything that I’ve seen. I’d like to very much encourage people to go to Marie’s Web site and to go to the Cancer Survivors Network Web site, and to perhaps start a support group online. And who knows from there, because from there it could just start into a small group and then it could break up into sort of more specific–whatever people want. Anybody who wants to can access all the network shows and the personal stories; there are two different ways. Mel: Can I pass one more Web site on to the women who are online?  There are a lot of resources for lesbians with cancer. Marie: Thank you.

Out With Cancer continues to be our community’s leading Lesbian cancer survivor website. Note: All the content of this interviews has collected from American Cancer Society’s Cancer Survivors Network. Recorded December 20, 2002

Comments

  1. George Pollini says:

    Great post, mate! As a Transman, there’s nothing that I have found that addresses my cancer issues like your organization….thank you for your help.

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