Linda

[NAME] became a co-survivor. I didn't know it was called that at the time, but he took on that role so easily and so readily. And he was good at it. I told you he was an electrical engineer and he was a researcher, and he would be at the doctor's office. And the doctor started to talk about nipple saving surgery, and my husband said, would say, “I read about that.” You know? And I’m like, you know, “You did?” And here's why it's important to have a significant other, a husband, a co-survivor, someone with you at all times. And I'm just going to give you a little scenario. Doctors are firing away and they're talking to you, and they want you to take your pink vest, paper vest, and they want to look and see what's going on here. They are looking at your breasts. You're looking at your breasts, at your implants. The doctor's talking. He's pointing and you're trying to figure out what he's saying, and you miss a lot of it. And we would get back in the car and [NAME] would say, “Well [NAME] said, duh, duh, duh duh, duh.” And I went, “He did?” He goes, “Yeah.” [NAME] heard for me all the things that I missed, and he would write them down and we would formulate questions together. And he was with me every step of the way. He took me to every doctor's appointment.

And we had a young lady who is 40 who was going to have double mastectomies come. And she, I said, “You want to go see what they look like?” And she said, “Yes.” We went to the bathroom. She said, “Could I touch them?” I said, “Of course you can.” She said, “Oh they don't feel like bowling balls.” I said, “No, they don't.” These are my implants. And she said, “They move and they're soft.” And I said, “Yeah, they are.” The only complaint I have about them is they're a little cold.   Silica gel is not a really good conductor of heat, so sometimes they're a little cold. But   so, show and tell is important. If you're looking at mastectomy scars, but you want to think, but you, you want to see what could be, you need to look at somebody else's who's done this. It's important.

I've been on aromatase inhibitors, which are drugs that stop the production of estrogen in your body. It sounds easy. It's not.   Your body craves estrogen and your body continues to make estrogen, but you're taking drugs that shut that estrogen production down. So, you'll notice changes, not as severe as what chemotherapy patients have, but I did lose hair and I did, my hair got very brittle and   you can't see it today, but my hair’s naturally curly, and so I got a lot more curls. It changed texture.  Your skin will change. You'll feel differently about yourself.     I have some times when my husband says it looks like PMS, but it's not. It's just your body without   estrogen. So, there's lots of side effects, but you learn how to   I say that I'm a master at managing side effects. It's what I do now.

I had so many questions that I would type them up, a copy for the doctor, copy for me. But many times, when a doctor comes in the room and they see you with a whole list of questions, they would immediately just scoff. And so, what I did was, I would hand my questions to the nurse or to the doctor and I would say, "These are questions I have. Could we go through it?" Well, now I've given the doctor control of it, and he would scan it and he or the nurse would answer my questions. And I left there each day feeling that I had gotten everything I needed to know.

---

My reconstructive surgeon looked at me, he said, "Can I keep this copy?" And I said, "Of course. That is your copy." So, this was a way that I, I felt like I was working and collaborating with my doctor to get answers that I needed.

So, that whole first year, I would go into the oncologist every three months and I literally would say to her, “What do you suggest I do? OK. This is what's occurring.” And my poor husband's sitting there and I'm just blurting this all out. And I'm telling her, “This is not fair. This is not fair.”

---

And so finally, that third time in office, she leaned back in her chair and she said, “Have you ever heard of Mona Lisa Touch?” And I went, “What?” I said, “Write that down for me.” So, she did. She wrote it down on a prescription pad and she handed it to me, and she said, “This is something that is fairly new-, new to our city, and there's only a handful of doctors who are doing it.”

---

It's a laser procedure that makes tiny little laser holes in your-, the walls of your vagina, which causes immediately-, it irritates it. It causes it to immediately make—it sends a lot of blood and it makes new tissues because it's got more blood flow to it. So, you irritate it and then it begins to heal itself. And in the healing, you get this new result.

---

So, I went ahead and had the three treatments done. Now, your insurance will not pay for this, but it was worth every penny that we paid. The first treatment, you have to go eight weeks, and I really didn't see any change at all. Talked to the doctor about it. She said, “Not uncommon.” We did the second treatment. By the time I got back to her, I was like, “Hey, this is pretty good.” By the time I came back after the third treatment, I told her, “Guess what? We're having a little honeymoon here.” And she was delighted.

I kept saying to my husband, “I just want my life back. I just want my life back.” Because I felt like my life was careening out of control and I had lost some of that control. I felt like I probably had lost all of it, and how was I ever going to get this back. How was I ever going to be able to fight this cancer if I didn't get some manner of control? And what I finally came to realize was that I was never going to get that other life back. I was now on a different path and that it was up to me to walk that new path, and yes, my life would change, but I would stay the same or maybe I'd be even better. I don't know. It took me a long time to say that, so that's why I'm telling other people. So, if you have those feelings, you'll understand that it's okay to say that. But just find your new path.

And sometimes we call ourselves sisters in scars. And we actually have had a lot of fun as people do their reconstruction. We play show and tell. There's a bathroom that's not too far down the hall from where we meet at the church and we go and we play show and tell. Everybody wanted to see my tattoos, and then another girl got tattoos and we wanted to see hers. And we had a young lady who is 40 who was going to have double mastectomies come. And she, I said, "You want to go see what they look like?" And she said, "Yes." We went to the bathroom. She said, "Could I touch them?" I said, "Of course you can." She said, "Oh they don't feel like bowling balls." I said, "No, they don't." These are my implants. And she said, "They move and they're soft." And I said, "Yeah, they are."

---

But, so, show and tell is important. If you're looking at mastectomy scars, but you want to think, but you, you want to see what could be, you need to look at somebody else's who's done this. It's important.

And so there's a lot of things you can do for yourself, and I wasn't doing any of them. And so, one of the suggestions that I had gotten a packet from a hospital was to attend a breast cancer support group meeting. So, I made the reservation to go. It was at the hospital where I had been, had my surgery, and my husband took me that day. And there were 45 women there. It was a huge group, and many had very compelling stories. As a matter of fact, four of them were there because they were having recurrences. It's very, very difficult to talk to someone who's having a recurrence when you're just three months out of your mastectomies. I'm not ready to think about that. Scary. And I was on the top row of this huge lecture hall, and I turned around, and there was a young lady sitting behind me. And she introduced herself, and she said, "Deer in the headlights?" And I said, "Yes." And she said, "It's a big group." I said, "Yes. Don't think I'll be back."

---

I left in a panic and found my husband. It had come too close. It was too close. And I, I went home, and I cried most of the way home. And I told my husband I would not be back. This had done nothing for me but make me scared and frightened.

What's your feeling about the pink ribbon?

Well, this is going to sound a little bit trite, but I liked the slogan that Susan G. Komen used the last two years of being more than pink. Pink is great, but we are more than pink. We are survivors and the battle that we fight and is important to us to come out as survivors, to share our stories, and to wear that pink ribbon. But we are so much more. And I believe that. So yes, I support that. I, I have worn my T-shirts that say, survivor 2016 on the back. And I will have, my daughter and I went to Universal and Disney World, and I had people, didn't realize that they were looking and people would touch me and say, “congratulations. You're a survivor.” And, or you'll have people say, like I'll wear my hat that says, “Fight like a girl” and it has a swoosh, pink swoosh on it. And they'll say, “Are you a survivor?” And I say, “Yes, I am. Two and a half years.” And she'll go, “Five years.” “22 years.” It's amazing. It's wonderful. It, it's like, I'll be walking on the beach and someone will, I'll have my hat on and somebody will stop me and say, “congratulations. Just wanted to let you know I'm a survivor.” And I had a man stop me in October and said, “I had liver cancer and I'm a survivor.” It's the club you never really wanted to join. I think I told you that the first time we spoke. I've realized that, but after you get in, you meet wonderful, wonderful people who are doing the same thing you did. And so, there is some strength in, in that companionship.

I kept saying to my husband, “I just want my, my life back. I just want my life back.” Because I felt like my life was careening out of control and I had lost some of that control. I felt like I probably had lost all of it, and how was I ever going to get this back and how was I ever going to be able to fight this cancer if I didn't get some manner of control? And what I finally came to realize was that I was never going to get that other life back. I was now on a different path and that it was up to me to walk that new path. And yes, my life would change, but I would stay the same, or maybe I'd be even better.

People are very different. And I've come across this especially with people who are in grief situations. You don't know what to say, and I learned that, finally, with my cancer that it's just better sometimes to say nothing. You can say, “I'm here.” You can say, “I'll sit here with you. I'll hold your hand.” Sometimes that's better than saying, “Well, you know, my best friend's sister had breast cancer and she just went through this, and she did duh, duh, duh, duh, duh.” I want to tell you that   all cancers are different. Your cancer is very different from the next person's and if you don't want to hear that and you don't want to hurt people's feelings, you should just say, “Well, I am so happy that she's doing well” and move on with your conversation. You don't have to listen about to everyone's aunt or uncle or whoever had cancer because all cancers are different and you need to focus on yours.