Merete is a 70 year-old woman with two children who came to the United States thirty years ago to live with her American husband. Her mother died of breast cancer so she was always vigilant about self-breast exams and annual mammograms. Merete talks about life as a teacher with breast cancer and how her treatment protocol of a single mastectomy and chemotherapy has had lasting effects on her life. As a seventy year old, she has a different point of view about breast reconstruction, choosing not to replace her surgically removed breast. She speaks frankly about how her decision not to have reconstruction would have been different if she been diagnosed with breast cancer as a younger woman.
My name is Merete. I'm from Denmark. I will have a bit of an accent; you probably noticed that. I'm 70 years old and I've been in the U.S. since 1982. I am retired now but I used to teach English at the different community colleges. I'm also a writer and I am a literary scholar.
My mother died of breast cancer. The main reason why she died is probably that she was basically afraid of doctors, so she was in stage 4 when it was discovered and she died shortly afterwards. So, ever since I came here I've had an annual mammogram. I did try to do self-examination but as the doctors say it's very unreliable. I wasn't all that consistent and I never knew which was which because I have dense breast tissue and it's lumpy; there was just lumps all over the place.
I was due for my next mammogram. The previous ones had all been negative and of course I know now that they were false-negatives. I didn't know how critical it was that when you have dense breast tissue you really, really can't rely on the mammograms. So I did examine myself; for whatever reason found this little lump that felt like a pea; was totally freaked out; head off to urgent care; and they said, oh, that's nothing, but what about that big lump, and I, yeah, I knew there were lumps but I didn't know that this lump was different. And so they sent me off to have a diagnostic mammogram and there it was. And it was right away. I think it was on a Friday, and Monday morning I had a diagnostic mammogram and a biopsy and ultrasound, the works. All of which was nerve wracking but not painful at all.
They gave me an appointment for a week later and then they called a couple of days later and told me they had changed my appointment and wanted me to come in right away, and of course then I was absolutely convinced that, yes, this is cancer. I thought so right from the start. I mean, one technician said, oh, maybe it's just calcifications. And then a doctor came in, and he said, well, you haven't had cancer before so you probably have a lot of questions before my diagnosis, but I was actually grateful to him because what else could it possibly be? He looked at the screen and what he saw was almost certainly cancer. You could say he was a bit presumptuous, but I actually felt a lot better. No, I didn't need someone to say, oh, maybe it's going to be okay. I didn't think it was going to be okay.
I came in. I got the diagnosis. I wasn't the least bit surprised and, yeah, I was really shaky but I was also, well, we finally have a diagnosis. I'm not surprised. Let's get this show on the road; otherwise I would be without a job. So I think I shocked my surgeon a little bit because I said I have to start teaching summer class; how soon can you do the surgery and how soon can I go to work? And so I forget how long but it was just a few days later I had the surgery.
She was great. She explained that she recommended a modified radical mastectomy because the lump was in a place where, even if they could do a lumpectomy, the results would still look pretty awful, and I was fine with that. I mean at that point it was just like, cut it off; get it out of my body.
Well, there was one scary bit but we probably scared my poor surgeon more. My left arm was paralyzed when I woke up, and she was really fit to be tied. Turned out that a muscle, I mean a nerve had been stretched, cause I said I've got to be able to drive to work. I drive an old bug. It's a stick. I've got to be able to do it. And it cleared up, and I had 10 days from the surgery till I started my class. And it cleared up. I did the exercises that they taught me to do, and after 10 days I was back to normal.
When I went to teach my first class I was all bandaged up. I had the wings here and you feel tired, really tired, but my husband and I had been through a really rough period previous to that and this kind of brought us very close together. I think that was part of it, too. He really came through for me, and I was just so happy about that. It's like, yeah, I can handle this.
The good news as my ex told me was that I was a candidate for the herceptin because my cancer was HER2 positive and I had never heard about that so that doesn't really have any side effects but I realized that I got carboplatin and taxotere and that's just a horrible hardcore stuff. You lose your hair. You're unbelievably tired.
I was really scared because when I was still married to my ex, he did a ton of research on chemotherapy, and back in the 70's I helped him translate his articles into English, so what I knew was you barf all the time; you are so miserable; so I was terrified. But the anti-nausea drugs at least for me they worked. I mean I was nauseous. I couldn't eat during chemo weekend, but I didn't throw up, and that's important because if the patients do that, it makes them very, very weak.
The way it worked for us, I would get it on the Friday and then I would take off from work Monday and then go back Tuesday. And so Friday I would spend all day getting it; it would take 6 or 7 hours; and then by Saturday I would just start getting totally miserable. That's the best way I can put it. There was this horrible taste in my mouth. I had to eat a little bit, like one spoonful of whatever I could get down, and then take the pills every five hours I found out and just getting the pill down was like if I don't get it down it's really going to be bad; I've to get it down. And then I had four hours where I could relax and then, oops, time again. I got the chemo every three weeks which I believe is quite normal and then you get somewhat better. Not back to normal at all, but you get somewhat better and then you start all over.
It is unbelievably hard, and to me losing my hair was the least of it. Well, at my age I don't think it's that critical. I mean you lose your hair; it grows back. I had a friend who actually bought a wig, in Southern California in the summer time. Forget about that, so I never bothered to do that. It wasn't a secret. I had no problem telling people what was going on, so I just wore my scarves. Color-coordinated but that was about it.
If I had been diagnosed when I was, say, 35, I think the thing with the hair would probably have been a lot harder. I'm also thinking that if you're in a stable relationship, it's probably a lot easier to deal with, but if you're single, if you're hoping to find somebody, it's probably very hard.
I decided not to get the reconstruction. I'm wearing a breast form. Again, my ex suggested that it could be tricky to get the reconstruction. Had I been young, I'm sure I would have done it, but at my age I just didn't think that that was a big deal.
I used to be very, very skinny and totally flat chested. I mean there was just nothing there, and so at least now, there still isn't very much, but now it's a good thing because had I been well-endowed I would have had to wear a really big breast form. Well, now I don't, so not that I think in terms of cup size anymore; again lots of things change when you get to be my age.
After the chemo and after the surgery, a lot of things do change. I have a little bit of scoliosis, curvature of the spine, and I've got a lot worse. I now have a lot of pain in my left side, which is my back really, all the time, and what my chiropractor tells me that that's almost certainly a result of the surgery. Because my cancer is, was, estrogen receptive I have to take an aroma-taste inhibitor that kills and removes all estrogen from your body. If you have side effects that are really bad, but not very many patients do have those side effects, so you have to say, well, osteoporosis can really kill you. This probably will so I have to take that and you get dry mouth. So there are all those things. And I mean you just have to say, well, so long as the cancer hasn't come back, I can handle it.
The reason why I'm here is because I'm married to an American. I'm the one who goes with him. He's 83 years old. He's in great shape physically but he belongs to the generation of heal me, doctor, but please don't involve me. So when he had a big health scare a year ago I was the one coordinating everything and taking care of him. I mean, he was in the waiting room; he helped me when I broke down and cried. He was a great support, but for him to sit with me and try to understand what the doctors were saying was just not an option. I'm reasonably good at processing that kind of information, I think.
My back-up oncologist was my ex. We were able to get over the trauma of the divorce, which wasn't easy, and become friends and family. I love this man dearly but as a relative, and he was my back-up. He was there. He called me and he walked me through everything. He had his hands full because his younger brother had just been diagnosed with prostate cancer so he was kind of dealing with both of us, but he is a great guy, and a fantastic doctor, so, yeah, without him I don't know what I would have done. He was so good.
In all kinds of ways I don't think you'll get back to who you were. For starters, there's always that thought in the back your mind, will the cancer come back. Mine had spread to my lymph nodes so it may very well come back, and it can come back even a decade later, so there's that. I still don't think I'm back but that could just be age. I mean, I used to run 10K races and be really, really active and I'm just definitely not nearly as active anymore so whatever combination of the whole cancer experience and age could be but, no, I'm definitely not back to normal.
I can't say I'm cancer free because there is no way of knowing; they have no test that shows whether or not you are cancer free. When it comes to breast cancer, there is no such thing as being in remission or knowing whether or not you are cancer free so you simply have to take it one year at a time, and perhaps you have to acknowledge that there will be panicky moments at four o'clock in the morning where you really think about your mortality, but before…when you just got your diagnosis I would say google, google, google and learn to be a good googler. Well, I've done a lot of research in my time, writing my dissertation and all of that, so at least I know how to do research and I feel you can teach yourself to evaluate websites up to a point, but also remember you are not a doctor; you are the patient; but be an informed patient.
Well, I found that I think any cancer patient would probably be a great help; it doesn't have to be a patient with breast cancer. I have a neighbor who has I think it's non-Hodgkin’s lymphoma and we've been bonding over that because I found I have to be really careful about talking about my mortality and saying if I'm still alive, it freaks people out, but it's a reality; it's a reality for all of us, of course; but when you're a cancer patient it is a real reality and to say that to another cancer patient, they understand. All your fears that it may come back because it's always there; so maybe only someone who's been there one way or another can really deal with that. I just found that I shouldn't talk to other people about it because some of them feel guilty, which they shouldn't, you know survivor's guilt, and when they say they don't understand I say, of course not, you're not supposed to; just listen, that's all you have to do.
I am really happy to be able to talk about my experience. If that can help other women, I would be really, really happy, and I wish something like this had been available to me.