So my story, as I say, it was a while ago, I was only in my 30s. Originally, when I was 19, I had what was called a fibroadenoma, which is a benign growth in the breast. Then they took it out because it was getting quite large. They don’t usually bother, otherwise. And I was watched and nothing ever happened for years. And then when I was in my mid-30s, during an exam, a gynecological exam, the gynecologist noticed that there was suddenly a lump. And it was growing fast because I hadn’t even felt the lump before. So he recommended that I actually see a breast surgeon. I knew somebody at Memorial Sloan Kettering and he put me in touch with wonderful Dr. Patrick, who was… what he said, she was a great surgeon as well as a great human being.
And so I took my test, did everything, had my biopsy, and she came to me and said, “You have a rare disease. It’s a cystosarcoma phyllode. It’s a rare tumor. It often happens with people like you who had a benign tumor when you were young. And actually, 19 is the normal age that this happens. And that when you’re about 36, 37, that you get this other tumor, which is not considered… It’s cancerous yet, what you have, it’s not quite cancer, it is borderline.”
So the cells were growing very fast. So it was almost cancerous. But the fact is that it wasn’t to that point yet. And she was very, very wonderful. She made sure it was during the summer when I had the biopsy and she made sure that the world-famous guy got to see it in the end, to give me a prognosis that basically reassured that if I took the tumor out, that I had an excellent chance of surviving.
Now I was really young and as I said, I had done this other excision before from my… and it happened to be not in the same breast either. And so it was like, “Yeah, yeah, just cut it out.” And then she said, “Well, what they have to do, since it grows these roots and it can metastasize in your lung, because if you cut it out without getting all the roots, then it regrows. And each time it regrows, it gets bigger and faster. And that was the main problem. And then it can metastasize into your lung.”
And she assured me that even if it’s in my lung, that doesn’t mean that it would be a bad diagnosis, but to get it out as soon as possible was best. And that they had to do several centimeters around it. And my breast was small, so that basically was a mastectomy. She left a little of the curve so that when the implant came it would look more normal. But that basically was, I lost the entire breast. But she assured me that that was all I needed to do. Any other treatments didn’t work.
After my recovery, I met a scientist who was actually trying to work on my tumor, but he said he couldn’t get funding for it because it was so rare that they didn’t want to give him any money to study it. So they had to resort basically to the only solution that they had at hand was to basically cut it, cut everything out and just watch it for five years to make sure it didn’t grow back. Oh, sorry, two years. And to make sure that it didn’t grow back, as I said. It was a while ago. I’m now 66.
I’m trying to recall all the details now because it’s not… Again, as I say, I don’t live in identifying myself by my illness. It was something I did. And I was very much into the idea that I’m going to do what I need to do and then get on with my life. That was the only attitude I had. And I don’t think it really sunk into me at that point about anything, any other repercussions except for the fact that I had to do this.
And it turns out also that my surgeon, my breast surgeon was an expert on this disease and she had actually written the article about it. And she was wonderful. She gave me the actual article, treated me like an intelligent human being and said, “Please read it. If you have any questions, let me know. And get a second opinion.” And so I went for my second opinion and that doctor even said, “Well, if Dr. Patrick says you need it, you need it. I don’t even have to even think twice about it.”
The biggest tragedy is that she was run over by an ambulance crossing the street in front of her workplace and she was killed a number of years later, which was a real tragedy. It was a tragedy for the profession and it was a tragedy for all her patients. I would come to see her and she would say, “Oh…” In a very human friendly tone. Once she gave me a bag of cookies, she says, “One of my patients brought me these cookies, here, you have some.” Once she had a patient that had a mastectomy and was having a really tough time with it and had wanted me to talk with her because as she said, she was, “You seem to have handled the situation, understood what you needed to do and dealt with it.”
So yeah, as I say, I wanted to just get on with my life. I was teaching a class, it was in the summer and I was back to teaching in a week after the operation. And in two weeks, I was back in my studio and everybody was kind of, “Oh, this…” Amazed. And they thought I wouldn’t come back or all of this stuff. And I’m going, “What am I going to do? Sit at home and think about it?” It just made no sense. This is the reason why I wanted to get this over with.
And even going into the operating room, it was funny because the night before my operation, I had this well-meaning friend or somebody I actually knew who was supposedly helping, a breast cancer advocate. And she called me up to help me and she was telling me about her mastectomy and how she had screamed all the way into the operating room.
And the day before she did this little ceremony for her breast, and I knew this was not me at all. I just knew that I was going to go in there. I was busy lying on the [inaudible 00:08:59] and I was just joking with my anesthesiologist, which I think she was a little surprised at first because she was mostly used to people being a lot more nervous or like that.
But I was just, very much was just in that mood, “Okay, this is great. I’m going to get this over with. That’s fine.” And when I got out of surgery and I had these wonderful visits from friends and even when I was recuperating at home for a week, it was amazing because all of these people, some people who I barely knew, strangers, they just crowded around me and were there and supportive. And I think that even though it was a traumatic time, it was also one of the best times in my life. And I had a very supportive life-affirming time too, as strange as that might sound.
But I had another friend who years ago had breast cancer and she didn’t tell anybody until everything was over. And I said, “That’s crazy. You missed the most important part of that.” And she said, “Well, she didn’t want anybody to feel sorry for her.” And I said, “Nobody felt sorry for me.” People mostly didn’t even talk about it unless there was this medical scientist who was talking about it from that point of view. But nobody was there. They were there. We were having all kinds of conversations about life and things I’m interested in and we were interested and we were eating and drinking and just walking. Because there wasn’t much I could do. And I lived by Central Park then, where I would just go for walks in the park. And it was just…
As I say, it helped me to heal faster, having this amazing community of people around me. And I never forgot that moment. As I say, it was one of the highlights of my life in its very strange sense. And I always was focused on what was important to me. But I knew at that point is that, “Okay, now I have to do what I want to do.” It was the priority. I had always wanted to spend some time just living in Europe and making work there and being part of the culture rather than just visiting.
And I was living with my then boyfriend for 18 years then, but 19 years total. And I said, “Okay.” I said, “This is what I want to do from the beginning. This is what I want to do and you either come with me or you don’t.” That’s basically it. So even though I didn’t change my life drastically, I really fast-forwarded it. I guess in the back of my head, even though I was still relatively young, I had this idea that I could die at any time. And I never really thought about dying. It’s very interesting.
A year later, I had an eczema outbreak and my dermatologist at the time said… I said, “I have no idea where this came from suddenly, there’s usually some reason for it because it is usually from contact. It’s contact dermatitis that I get the eczema from.”.And she said, “Well, yeah, even though that’s how you get eczema, eczema is already in your system and you’re sensitized to it. And what I think is it was a delayed reaction to what happened the year before. So you finally realized, ‘Oh, I could have died.’ I mean, at the time I wasn’t even thinking that that was an option. It was more like, “Oh, I’m going to lose my whole breast. Well, I’ll have to live with that. It’s a body part, but it’s one that I can spare. And at least I have another one.”
So it wasn’t for me. And it was really interesting too, because when I was a kid, and I remember TIME Magazine. Not Time. Life Magazine had this series on a young woman who had breast cancer and she looked kind of like me. And I just looked at the photo series and I said, “Well, at least if I had to have that, I have small breasts, so it’s not so bad.” And I realized that the biggest thing that became a problem was a balance problem. And I was glad that my breasts weren’t that large. And also the fact that I am very active. I’m an artist. I’m carrying things all the time. I’m moving. And a lot of times the muscles that were also behind the breast and kept in place, they would suddenly come forward and I would have this excruciating pain from a cramp in it.
So after two years and they looked and nothing regrew, and then they decided to put the implant in, that that was more helpful, mostly for the sense that my body had balance again, and the other body parts were kept back in their place.
My Anatomical Journal 