Now an adjunct professor who mentors and trains student teachers, and an award-winning photographer, Judy was a single mom when she was first diagnosed and worried about caring for her son.
Back in 1984, I was living away from home for a couple of months while getting another master’s degree. While I was there, I felt a lump in my breast and went to a local doctor. He wasn’t quite sure what it was, and certainly didn’t have state-of-the-art equipment, so I ended up doing nothing about it for a couple of months.
When I got back home, a friend recommended a doctor and I went to see him. I remember him being excited about my diagnosis. It was ductal cancer, and he had never seen that kind of cancer before. He thought it was so interesting. I went to about five doctors before I found one I liked. This was back in the era of radical mastectomies, and that’s what one of them recommended. I opted for a different doctor who suggested a lumpectomy and lymph node dissection instead. Cancer was a death sentence back then. My mother came when I had the surgery. I remember her sitting on the end of the bed and sighing, deep sighs, like things were not ever going to be okay again.
Working Two Jobs
After the surgery I had six weeks of radiation every day. I was working at the time and had to leave work early every day. I was reorganized out of that job—I don’t know if it was related to leaving early. I had to continue working because we needed the money and I needed to make sure my son was okay. At one point, I was working two jobs. I would teach all day while he was at school, then go home, have dinner, and take my son to the sitter so I could teach another three hours. I remember being so tired that after picking him up and driving home, we would just stay in the car and sleep for a while before I gathered enough energy to go into the house.
My son was nine at the time, and he didn’t understand what was going on. He was angry.He would come to doctor appointments with me and was so furious he would turn over the furniture and rampage the waiting room.
It turns out that my surgeon was uncaring. Because of the lymph node dissection, they told me to move my arm and exercise to avoid lymphedema. I was doing that, and everything was fine. But at a check-up, he yanked on my arm and that resulted in a frozen shoulder. Then I had to use the other are for everything and ended up with a frozen shoulder on the other side. It went on for two years, all because of what the doctor had done.
Eight years later, the cancer returned, in the same spot. It was disappointing, but I had done this before, so knew I could do it again. At that point, I got in touch with one of the first women in breast cancer surgery. All of the doctors were male, except for her. They talked about chopping off breasts to make money. It was very disturbing. She was very supportive and kind, and suggested I have a mastectomy. I was also offered reconstruction and had three options, using tissue from my back, using stomach fat or having an implant. I opted for the implant, which required a painful skin stretching.
So now I have an implant with a piece of skin over the top. It maintains some balance to my body, and some protection for my chest, but it’s pretty ugly. It’s been replaced a couple of times, but it’s still not good. I see things moving in the right direction with reconstructions—they are preserving nipples and making things look more natural—but I think it’s too late for me.
I didn’t have any follow-up medication, no tamoxifen. I am really grateful for that. I have seen my sister on tamoxifen, and I know it would not have been good for me. My body reacts strongly to a lot of drugs. Without hormones, I can’t think straight, I can’t function.
The emotional journey of having cancer doesn’t go away because you have been “cured”. It’s continuous. A lot has to do with your view of mortality. If you are young, you have never had to face that sense of mortality. You know you are going to die at some point in the future, but you think it’s not happening now. Cancer makes it very real.
Needing an Advocate
You need people with you who are able to support you. The doctor says, “Looks like you have cancer, and this is what we are going to do.” But you can barely breath and can’t focus on what he is saying. I was already in the realm of worrying about my son, and how was I going to live and what would happen to him. I’m not sure that family is able to be really helpful. They don’t really understand what’s going on and are panicked and overwhelmed too. It’s best to have a friend who can take notes and advocate for you. You need someone to help you navigate all that, who cares about you, that you can call when you wake up at 2 in the morning wondering what to do.
I felt unsupported when I got cancer. I remember lying on a gurney before my mastectomy and my sister, brother-in-law and son were there. We waited a long time, and then they all went to dinner, so I was alone when they came to take me for surgery. I was scared and alone, and they wheeled me passed this total stranger who took one look at me and gave me the biggest hug. That was the one thing that I needed, someone who was empathetic. All these years later, it still brings tears to my eyes.
News Like That
I still go for check-ups and follow ups several times a year. And I still wonder if I would have done things differently in my life. When I was nursing my son, I had some congestion in one of the milk ducts. La Leche League recommended I continue nursing, but my doctor said to stop, so I stopped nursing. I am pretty certain that’s where the cancer came from – it was the same breast. I suspect that La Leche League was right and that if I had continued nursing, the congestion would have cleared. But the doctors didn’t have enough information back then.
What I have seen through the years is there is more access to emotional support and caring around cancer. And, it’s no longer a death sentence. More and more women and doctors (both men and women) seem to have that knowledge, and there are ways of reaching out and connecting to others who have gone through it. Often, we are so overwhelmed by the diagnosis and what is going on that it’s almost as if we need to be prepared in advance. But how do you prepare for news like that?