Lisa J.

So, all of them were very-, they were the best of their profession, so to speak, and because we communicated, like, they know I'm not into just like needless medications and treatments. Like, give me acupuncture. Like, I'm a Chinese medicine person, and acupuncture, which has been incredibly, incredibly helpful for me for the breast cancer. Pre-surgery,and post-surgery in terms of pain management because lupus and fibromyalgia carry a lot of pain and ache, and then coupled combined with the breast cancer surgery, and just the diagnosis. It-, it helped me tremendously whenever I could do it. And they got on a team. There was emails exchanged, phone calls because of the surgery, and any potential complications. I also have a clotting factor with my blood. So it was—each had to sort of follow the other and very closely.

My doctor also asked if I wanted to have a complete mastectomy and my ovaries if I was going to—because I was in my 30's at this point. And I said—she said, "Oh, it's like the operation Angelina Jolie," because this was when it was, you know, happened. I'm like, "Well, she's rich and married to Brad Pitt," you know? [LAUGHING] She has a surgery, you know, bully for her. You know, she can have this reconstruction, and, you know, her life is, you know, pretty grand. If I go that route, that's pretty severe for me. So, I said thank you, but no thank you. And she was just telling me as an option, you know, not pushing, but having the BRCA gene positive test come back definitely brought what was now-, what was previously something that—in the back of my mind to the forefront of my mind.

I'm a Nichiren Shoshu Buddhist. And we chant this chant, "Nam Myoho Renge Kyo," which is loosely translated; it's a quote about the Lotus Sutra. The lotus flower is a pretty, usually, very white or cream-colored flower that grows in the muddiest of water, like really mud water. So, you're always thinking, how does this like, very light, you know, beautiful flower grow in like the sludgiest mud ever?

So, I always think about it in terms of, it's-, you chant for yourself, and you chant for others, and you're trying to always be in sync with the universe, right. So, you always have to deal with reality. Like, you're always chatting about the reality of the situation. So, when all of this was hitting, it's not that our view of it—I don't know if I'm doing it justice—but our view of it is not that, you know, you chant, and then never, never anything's going to happen. But, like, what do you-, how do you fix it? If not fix it, then how do you manage it? And what are you going to take action on? Like, what are you going to do about it? So yeah, you chant that you're better and you get the right doctors, and you chant for wisdom. You chant that your doctors are, you know, doing well, so they treat you well, and you're doing-, you come in as your best patient self. And, you know, there are times that we're going to fail. Like, that's just the nature of the beast. So, that's the nature of life. So, you always chant to see the reality.

I met someone and now I'm dating someone. It's a whole different reality. Like, I think about dating differently now after breast cancer and all, you know, the other co-conditions. And how you share things, it really forces you to share stuff because you can't hide. And even if I think I'm not hiding something, I'll be perfectly fine not discussing my mammogram appointment. And here's someone who's like, "Well what happened? Did you have a doctor's appointment? Like what's going on? Blah, blah, blah, blah." And it's just so foreign for me because it's just not something I've allowed.

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I had to really kind of get some frame of reference for this because it's just not something I've ever allowed to be done. But I have to also have that conversation with myself and say, "You don't have to do this, but you can also try this." Like, this level of intimacy after cancer.

In the end, I still couldn't tell some pretty close friends. I couldn't, I just didn't have the words for me. And I've learned I'm probably a much more private than people would like me to be, and it's not deliberate. It's just how I've lived my life.

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I didn't ask anyone to go to my appointments. I didn't tell people I was going to my appointments. The only time I had someone come who is a good friend, but we weren't as close. You know, when you have, like, people you know, and you're—and being that she worked not far from my doctor's office when I had my surgery, I had her pick me up.

And take you home.

And I-, actually no. I just had her pick me up, and then I got into a cab. And because I really didn't want that level of support. I just really wanted to—and I was so tired, and again, co-conditions come in. And after I got the surgery she had—she would have taken me home. Like, she would have done anything. And I'm like, "No, that's okay. I just needed you," because you need an adult to pick you up. And I just said to her, "No, I'm okay." and I insisted. And I met someone. I just took Uber or something home, and I just wanted to sleep because I didn't want—sometimes; and again, in their kindness and their generosity, they may want to take you home and, like, make sure you go to bed. And I'm like, "No, I'm good. I set it all up." [LAUGHTER] And that was just me because again, I told a few people. But I, I was; still, I still just had to process.

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But when I reflect now, I'm like, I should have just let everybody and their dog just, you know. Maybe, come over and like play and let me fall asleep. Maybe a dog could have been in the scenario, maybe cats, because I love animals or not. I think I just, I when you say support, I've always had it. But again, even when I think about it now, it was like, I just wanted to, you know, go to sleep. I just wanted to feel, like, grounded.

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I just wanted to go through, like, the initial process by myself, but I do have a support system. And then after the second year that I started telling people, I had people just break down on me. And they were like, "Why didn't you tell me?" And you know, "Why and this," you know, and plus I had an aide, so, I had that sense of, like, somebody is there. Like I said, my insurance kicked in really well. I had, what do you call those help buttons—I had someone, like, you know, again, my aide, who, you know, to this day is, is fabulous and very respectful, and I trust her. And it's-, you know, if I needed something, she got it. But she also knew if I needed not to talk, she was good with that, too, and still is. And, yeah, so, I was pretty taken care of, you know, to the extent that I allowed someone to take care of me.

But I always love kids. I always thought, well, you know, I think one day I'd like to have kids. You know, marriage, not marriage, as long as I afford them, I'm going to have kids. So, then I'm getting—then that's when the BRCA test came back, and it's like “Oh ovarian cancer. Oh, you have a higher rate for ovarian cancer.” You know, and so it flashed back to my oncology doctor saying this radical removal of your ovarian system and your breasts. And I'm like, “Yeah, but if I do want to have kids, 36 is not the cutoff date,” you know? So then I did some research into adoption, and they're like, “You can adopt at any age.” So, all    of a sudden, my pretty quiet biological clock just shut down. I said, “Oh, any adoption, any age, as long as you're healthy or as long as”—you know, whatever the criteria was, I met it. So, I'm like, “Okay. So, if something happens,” because that was also very big for me, too. I'm thinking if this does happen to me, that's when I flashback to my mom, you know, and how I was left young. So, I'm like alright, let me take that off the table. I can adopt. And as long as I could provide or make sure they're okay, then I can have kids. So-, but as far as having children biologically it took the angst off the table because I realized I had this BRCA gene. So then it became like a louder message in my head. I said, okay, so I've got the adoption handled, you know. If I want to, that's an option. Foster, adoption, like, I found out all these different options. It's like phew.

I took this course called Project Lead, where I spent a week out in San Diego with the National Breast Cancer Coalition. And it was an amazing time. You know, I'm not even a closet, you know, research, I love that. I just love that part of research and learning. And I was still in the throes of, you know, my lupus and, you know, getting the surgery for my thyroid. And so, I'm out there, and I'm with women that have, you know, survived all these years, and so, I mean, you know that organization. It's really like the SWAT team in terms of the cancer community. And you're there with incredible researchers, doctors, and every day is a new panel, and all of this. And the advocacy at the highest level and these amazing women that you meet that are really ferocious fighters. And are living with metastatic breast cancer.

It's very important that you know how to advocate for yourself. Take it step by step. It's cliché, but it's still true that you have to be your best advocate, or you find someone who you trust to be your advocate. There's no dumb questions. There's no stupid questions. If you don't feel comfortable with somebody, and you're getting that sense that this isn't a good fit, your insurance company has a network. If you don't want to look it up online, you call the customer service, the member services, and you find somebody else. It's good to document; this is what I went through, this is what I need, this is what I'm feeling, and be able to say your story in a way that people can hear you. If that makes sense.

I took this course called Project Lead, where I spent a week out in San Diego with the National Breast Cancer Coalition. And it was an amazing time. You know, I'm not even a closet, you know, research, I love that. I just love that part of research and learning. And I was still in the throes of, you know, my lupus and, you know, getting the surgery for my thyroid. And so, I'm out there, and I'm with women that have, you know, survived all these years, and so, I mean, you know that organization. It's really like the SWAT team in terms of the cancer community. And you're there with incredible researchers, doctors, and every day is a new panel, and all of this. And the advocacy at the highest level and these amazing women that you meet that are really ferocious fighters. And are living with metastatic breast cancer.

Okay now let me be a survivor advocate because I was an advocate before with my food work and my community work. You know, I've been a tenant advocate for a while. So, I've always had something to do with that, but now it's like breast cancer advocacy, you know. So if you kind of have the gene for it or the taste for it, it's just a matter of what subject do you want to put in. If you have that level of, of conviction for it.

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That's where advocacy, patient advocacy on that level of, you know, maybe being a reviewer, maybe working with researchers.

Right.

That's the goal. I mean, more patient advocacy and researchers working together for something that is viable and sustainable, of course, right. But like I said, when you see those types that I've described, you know, amazing survivors who pour their life into advocacy, and even if not everybody can advocate, you know. And I'm a big person on that, that not everybody wants to advocate, put it this way. Some people come into advocacy by accident. Some people feel they're forced to. Everyone can in their way. But not everybody feels comfortable speaking out in a certain way. So, maybe there's something else they can do.

There has to be a meeting of the minds, where it's you and the patient are a real team. You have to know the background of that person. I'm not saying you're sitting there like their therapist, but you kind of have to get to know them.