A psychologist, mother of three grown children and a dog, who likes to run in her spare time, Sue has been dealing with recurrent ovarian cancer for more than a decade.
My regular gynecologist had been taking baseline sonograms and blood tests for years, because my mother had died of cancer. When I was 50, my gynecologist told me my cancer marker, the CA-125, was high and suggested we take out my ovaries. He also suggested I get a more thorough sonogram. So, I went to a specialist. I was scheduled for an oophorectomy, but ended up with a radical hysterectomy. They had found two small cancerous lesions, on my ovary and on my fallopian tube.
When I came out of anesthesia, I knew right away that it was cancer. I think I had a sense of that going in. But, the doctor said not to worry — I would have chemotherapy and then I would be fine. He said it with such conviction that I was reassured. Turns out, the CA-125 test was a window into what was happening.
I tried to compartmentalize the news. I had tremendous support from family and friends as I recovered from surgery. Once I was ambulatory again, my first order of business was getting a wig. I wanted life to go on as normally as possible and didn’t want it to be obvious that I was going through cancer. I didn’t tell a lot of people and loved it when I would get compliments on my hair! It helped me not feel like a cancer patient. I didn’t want to be defined by cancer or to have to reassure others that I was going to be okay. Only my oldest child picked up on it.
After 6 rounds of treatment, my doctor did a second-look laparoscopy surgery and a PET scan. Everything was clean. I was assured that the chemo had treated the microscopic cancer cells and that they had gotten everything out. And my doctor had said, “Now your risk is the same as anyone else now.” I really thought I was done.
Unfortunately, after about 4 years, my CA-125 started to trend up slightly. So, I had another PET scan and it showed some irregular cells. I was devastated. I remember pleading with my doctor, trying to understand as I struggled to grapple with the unfairness of the situation. You told me this wouldn’t happen. I eat well, I run. How could this happen? But it did. We all wish to have control over the circumstances of our lives and of course we cannot.
I want back to the hospital for another surgery, and once again was reassured that they got everything. Then I went back on chemo. I never really paused life, but sometimes it was hard to convince myself sometimes not to. After the last cycle of chemo, another PET scan showed I was clean, and I was once again assured I would be fine.
Three years later, I felt something. At first, I thought I had pulled something in my groin. But, another scan showed irregular cells in my lymph glands.
Bump in the Road
I was completely devastated all over again. How could this be happening again? And why did it keep happening? I was ready to spin out of control, but then my doctor helped me change my mindset. He said to think of it as “a bump in the road” and that I was going to get back on track. And he reassured me that if we take care of it now when it’s easy, I will be fine. I had outpatient surgery to remove a few lymph nodes, and another round of chemo. It really helped me to think of it in that way, and the chemo wasn’t devastating. I didn’t like the way I looked or felt, but it was okay. I was able to go on with my life.
In between chemo treatments, I would talk with my doctor about changes in treatment, immunotherapy and new discoveries. He told me that treatment these days is not so much about the site of the cancer, but the type of cells. So he sent some of my blood off to see if immunotherapy would work for me. The last time the cancer came back, in 2017, he started me on Avastin and Cytoxan. I stopped the Cytoxan because it was causing issues with my blood cell counts, but I’m still on the Avastin. It’s supposed to keep it from coming back, so the plan is to stay on it forever.
I have moments of calm, but the cancer is always with me. I worry about it all the time. I’m trying hard to keep a clear mind about it and to engage with life, but it can be hard. With every random symptom, I have to ask myself, is it a torn ligament or is it coming back? I don’t take the future for granted.
I’m a worrier by nature, and I don’t sleep well. I’ve always gotten by on little sleep, but I am learning to respect sleep. I’m working on that. It’s also helpful to be clear on what I can control and what is beyond my control. It doesn’t come naturally to me. There are days I want to curl up and watch Netflix all day, but if I work at it, it makes a difference. I try to do three things to help stay calm – I meditate, I walk the dog and I go for a 4-mile run. Having a meditation practice really helps.
My husband has always been a great supporter. When we first got the news, he was devastated and broke down. We had met in college and have been such soul mates. He is so devoted and patient and optimistic. He knew my mother and went through her cancer with me so many years earlier, so he had an inkling of what we were getting into. But I never wanted his life to be focused on cancer. I got the wig and stayed strong for him. And so far, he has never had to really be a caretaker for me. That has been a big part of my concern about it coming back. I don’t want his life to be about taking care of me.
With my most recent recurrence, my doctor emphasized that we really need to think about it as a chronic condition. So, I am recalibrating how I think about it. I kind of want people to catch up with the idea of chronic cancer. So long as the cancer stays manageable. The Avastin is really fine. I don’t feel any side effects from it and am functioning well, so it’s no big deal. But it is challenging not to think about what happens if it comes back and we need to be more aggressive. I do go there sometimes in my mind, but it’s like I have run out of energy to think about that. I don’t have the stamina for it. Besides, my doctor is so optimistic.
I was off treatment for a couple of months and the cancer marker got worse. Then when we restarted, it got better again. So that could be depressing, but it also makes it clear that it is manageable. It really doesn’t impede my life. The treatment is innocuous, you just have to plan around it. It’s sort of like having diabetes. But it’s with me every day. I can get into the why me — I have two sisters, but neither of the got it. But, I’m sitting here with a full head of hair and the assurance that everything is going to be okay because they caught it early. The cancer never progressed to the point where it prevented me from living my life.
A Different Cancer Category
While I keep hoping they will come up with a way to take care of it once and for all, my worst fear is that it will get ugly down the road. When I see people that aren’t doing well, it’s hard not to think that won’t happen to me. And when I get to that place of fear, that’s when I do more meditation. I try to treat my body well and have the sense it wants to heal itself. As I continue my journey, I’ve come to understand the crucial importance of mindset, mindfulness, and gratitude as coping skills for all realms of life: physical, psychological, cognitive and social, which are inextricably intertwined. I am increasingly convinced that how we perceive our reality is how we live our reality.
When it came back the first time, I didn’t tell anyone. I couldn’t believe it was happening. I couldn’t imagine that my cancer was not a one-time event and needed to convince myself that I was done. Now, I recognize that I am a cancer patient, but in a different category. I don’t want people to see me as being a cancer patient, but that’s what I am, and I am always somewhat vulnerable.