A psychologist used to helping others deal with their emotions, Catherine was unprepared for her own response to cancer when she was 52.
I discovered my cancer while I was traveling in Europe. In the bathroom mirror I saw a depression on my breast and thought maybe my camera strap was pressing on my breast. But then I could feel a lump and thought, “This can’t be good.” I didn’t want to worry about it while on vacation, but I called my doctor when I got home. She sent me to a surgeon and that’s when I learned I had three fairly decent sized masses in my left breast.
I knew nothing about breast cancer. I’m a psychologist so I know about anxiety. And I have had plenty of things in my life that caused anxiety—I’ve dealt with death and divorce—but I had no idea how much anxiety I could have. Nothing I ever experienced compared to this. I felt so out of control. I remember being overwhelmed and rocking back and forth, thinking “Oh my God, what am I going to do?”
Throughout my life, my way of dealing with things has been to take charge, but this was completely de-stabilizing and knocked me to the next planet. I felt I had to go from zero to a PhD in breast cancer in less than a month, which was how long I could wait before surgery. I did as much research as I could and chose my surgeon based partly on empathy—he looked at me, not just at the X-rays. Switching from panic to making a decision about the surgeon allowed me to feel a little better about it all.
I decided to have a lumpectomy, but they didn’t get enough clear margin, so I had to go back for a mastectomy. I was told a pain pump inserted after surgery would slow the healing process, so I didn’t opt for it, but I’ve had neuropathic pain in the left side of my chest ever since, and I wish I had had it put in.
How do you know what to do? At some point, you have to trust you are making the best decision possible with the information you have and forgive yourself for any mistakes. As a doctor said, “You can’t look back.” You need to be gentle, loving, and patient with yourself during this incredibly intense time. I couldn’t get it all right, which was ultimately OK.
I’ve spoken with women who’ve said, “I just did what the doctor said and didn’t think about it,” but I wanted to really think about it, feel what I needed to feel and get the support I needed. For me it’s more terrifying to go through an experience or an illness blind than to know what’s going on, but doctors often don’t tell you everything. I felt more vulnerable and fragile than ever before and became aware of the brevity of life. It’s an absolute miracle that anyone makes it to old age given what can happen. Life is a gift, and we have to make good choices about how we’re going to live it and how we’re going to leave it.
I was concerned about my mortality, but I was pretty certain cancer wasn’t going to kill me immediately. Since I was in menopause and ER+, they recommended chemo. But, I had heard about chemo brain and seen the horrors people went through. So, after meeting with the MD in charge of the local breast cancer center, I made the decision not to have chemo or radiation. I felt much better because I made my decision; I took back some decision making from the doctors. Clearly, I was taking a chance not having chemo, but I felt it was worth the risk. It felt right for me, so I made a deal with the doctor that I’d take estrogen-inhibiting medication for five years post-surgery instead.
I had one scare: 18 months after surgery I felt a lump near my armpit and had a PET/CT scan done. During the days I waited for the scan to be scheduled and the results, I started thinking about cancer recurrence and death and gradually came to a place of being OK with it. I didn’t want to die, but I was at peace with the possibility it could happen. Luckily, what I felt was only an enlarged lymph node. Now it’s been 15 years and I don’t worry about a recurrence. I do breast self-exams and don’t really think I’m going to get breast cancer again, but you never know.
When I was going through the two surgeries and after my breast was removed, I worried about my identity as a woman. I’d look at myself in the mirror and sob. I talked about it with women friends, which really helped. Part of it was getting emotional support, but also just saying the scary words out loud kept them from running around in my head. I did a lot of walking near the ocean and screaming into pillows, just trying to cope.
I felt absolute rage at getting cancer. There I was, living a healthy lifestyle and eating well; I didn’t smoke or drink, but I got it anyway. And now I worry about my granddaughters, as they have breast cancer on both sides of the family. Cancer did challenge my feeling of worthiness. I wondered what I did to deserve this, but the answer is, you don’t deserve this, it just happens.
After the surgeries, I wanted to get back to normal, but I had quite severe neuropathic pain that wasn’t diagnosed properly for seven months. I just wanted to cry because of the pain. I still have to be careful about what I wear and how much pressure or heat is applied to my chest. Because of the pain, I couldn’t have reconstructive surgery, so I use a prosthesis. For a number of months after surgery I used Xanax to help me sleep and was on an antidepressant for a time, but mostly I just chose to live. I’ve always seen myself as living to a great old age, perhaps 112, so I have a long time to go. But of course, anything can happen.
I decided to do everything I possibly could to live my life outside this cancer diagnosis. I’m a fairly traditional therapist but was nontraditional in my own care. At one time I did Qigong and used other types of healers and therapeutic techniques to help look at parts of the self that were critical and overbearing. It was an incredible opportunity to learn and be better prepared for when the next crisis happens.
I’d had a long history of Catholicism but had lost my connection to God and left the church. I wanted to recapture some spirituality, so I tried guided imagery with a hospital chaplain. During one session, I found myself in a long terra cotta colored tunnel. I stopped at a doorway on my right where I saw a giant figure outlined in bright neon colors. I could see that it was an angel with huge wings (Gabriel, Rafael?), which was so powerful I felt awed. The angel joined me in the tunnel and we walked along for a bit with him carrying a lantern so I could see down the tunnel. I saw an oblong frame on the wall, and inside in big block letters were the words “LET GOD IN.” So, I said, “OK, I guess I need to do that.”
Because of that experience, I began a spiritual practice that was a tremendous support for me. I didn’t know when I began if any of this would help, but I felt it couldn’t hurt. The mind is so powerful, and our knowledge of it is so minimal.
I’ve looked for ways to feel better both emotionally and physically. Being with friends and being out in nature helped. At one point, I was walking with a friend whose wife died of cancer, and he talked about the “blue bird of happiness”. I realized that I had a choice: I could be depressed and angry or I could choose to be happy and take what life brought as a challenge that I could find ways to cope with.
If I had been in less pain and able to have reconstructive surgery, things might have been different. But the pain was truly awful for a long time. I never found a medication that helped although psychotherapy and alternative therapies helped to some degree. And, I had the anxiety of getting through the stages of checkups, getting to the six-months, then the one-year mark and so on. I remember my husband saying a couple of months after the mastectomy, “I hope your next birthday is a million times better than this one.” Definitely having those big markers through the years has made things easier. Anxiety is useful and makes us pay attention, but it’s not a long-term healthy emotion.
Turning Anxiety into Passion
For the most part my husband was wonderful. I could cry on his shoulder and I felt safe wrapped in his arms. He was with me for the first surgery and came to most appointments. But he chose not to be with me for the second surgery. Instead, he went to work, which was a disappointment that I carried with me for a long time. He felt I was doing well and would be fine without him, but his not being there was a problem. He wasn’t there to help me with what I needed, like communicating my pain level to the nurses in the recovery room. It was difficult and we developed resentments about each other, but I’ve since let them go. I love him and we’ve been together more than 40 years. He’s never found me less attractive and our passion hasn’t changed.
When I felt very anxious or the pain was severe, I could turn my anxiety and pain into passion, which gave me a great personal boost. I’ve known of women whose husbands found them unattractive after a mastectomy, and relationships end, or men leave their wives. In that regard, my husband was always encouraging and supportive.
My life is not about cancer. I did talk to other women with breast cancer—somehow we find each other. Some of it was helpful to me, some less so. Everyone’s experience is different. I also had a lot of support from family and incredibly supportive friends. Without that, it would have been much harder. It’s always been difficult for me to ask for help so I didn’t realize the level of support available to me. Having breast cancer enabled me to move forward as a human being as well as a therapist. Previously, I was cautious about approaching certain topics with my patients. After cancer I felt more comfortable going deeper with clients who were dealing with trauma, including those with terminal illness.
I wish I had known more about the possibility of neuropathic pain and the consequences of surgery. They never really tell you, and I had no way of anticipating it. I wish I had had time to make better decisions; I’m not sure I made the best ones, despite being intelligent and doing my research. How can you decide? What are the best options? There are so many variables. There have been many opportunities for self-forgiveness.
No matter how much I complain, I feel very fortunate to be alive and doing pretty well. But it’s an ongoing experience. I knew that I would suffer a lot more if I didn’t do the emotional work to get back to who I was. Now that I’m older and have friends who are dying—sometimes of cancer—I know that every day we have a lot to be grateful for. I don’t forget to be grateful for the people in my life and for life itself.