Diane had always been a super coper, able to manage whatever life threw at her. A diagnosis of advanced ovarian cancer taught her that coping is easier with support from others.
It had been a rough six months. First, I lost my job out of the blue, a job I had organized my life around for a dozen years. Then, my mom died after a brief but intense battle with ALS. As I was helping my mother through her final months, I was having vague symptoms and suspected that something wasn’t right, but I didn’t look to closely into what was going on with my health. When I went for my first routine colonoscopy, the doctor was unable to perform it. He diagnosed diverticulitis and treated me for that, but that wasn’t the problem. In the process, he ordered a test that eventually set me on the path to exploratory abdominal surgery, which is when I learned what was really going on.
When I woke up from surgery, still on a gurney and foggy from anesthesia, I asked my husband what had happened. He said, “You have cancer.” Instantly, amid all of the uncertainty and concern about myself, I was consumed with worry for our two children. The thought of them growing up without their mother, especially my daughter who was 8 at the time, was beyond belief.
Needing Support
I learned that I had been diagnosed with Stage 3C ovarian cancer. My surgeon had removed one ovary, which had burst and spread cancer throughout my abdomen and pelvis, as well as some of my omentum and my appendix. Because of the spread of cancer, the surgeon was unable to remove the other ovary and my uterus. My medical team suggested chemo treatments to clear the cancer, which would allow for a second surgery, when I would be debulked. My oncologist came to talk to me a couple of times in the hospital about the treatment plan; however, between the pain and the morphine, it was hard to focus on what she was saying.
I felt very lonely while in the hospital and during the months I was in treatment. My husband felt overwhelmed by my illness, and it was hard for him to provide the support that I needed. I’m close with two of his sisters, who each came to stay with me around the time of my first surgery. They provided the succor that my husband couldn’t. One of my sisters-in-law accompanied me to the chemo education meetings and took notes, and after she’d gone home, I’d call her with questions about what I was supposed to do. As my cancer treatment progressed it became clear that I would need support from others, too. I found a very supportive community of friends who helped me to get through this time.
When I talked to my oncologist about my need for more support, she recommended a psychotherapist, whom I’ve been seeing ever since. I am a super coper—I just deal with things—from work to my long commute to managing my household. But I couldn’t cope with cancer by myself.
Fatigue and More Chemo
When my husband and I talked to our kids about my cancer, we told them it was very serious but I that was going to have chemotherapy treatment and be fine. My daughter really fixated on me losing my hair. She cried every night and put all her anxiety into “mommy is going to lose her hair.” My son was 14 at the time and would check in with me. He was empathetic and compassionate, but he didn’t really want to get into it too much. I told him not to do any research or take what friends might say as the truth. So, I emphasized that what he might read online was not relevant to my particular situation. And I let both kids know that I would keep them informed as to what was happening.
I never recovered from the first surgery before I started chemo, and so I had a hard time throughout. I was so wiped out all the time. The fatigue was hard, especially because I had always had so much energy.
I had chemo for 18 weeks before my second surgery. During the second surgery my surgeon removed my uterus and fallopian tubes, as well the other ovary. The tests did not show any evidence of cancer in the general area; however, because a trace of cancer was found in one of the fallopian tubes my team recommended that I do another nine weeks of chemo.
Embracing Uncertainty
Other than the fatigue, I tolerated the chemo quite well. My nails turned black and I had a lot of peripheral neuropathy in my feet and fingers. I couldn’t perform fine motor skills, like untying a knot, but after treatment those abilities came back. Now, the residual effects are in my feet—especially my toes. Wearing closed shoes is hard, and so I wear mules all the time. As far as I can tell, I didn’t experience any significant mental side effects from chemo
I finally finished chemotherapy treatment in the beginning of 2016. A few months later, my CA 125 test results showed an increase that was in range of normal but worryingly elevated. I started getting CT scans and regular CA 125 tests. Having these tests performed is such a rabbit hole because it’s hard to say for certain that one is in remission. As difficult as it is, you have to embrace uncertainty.
While it was hard to deal the physical effects of cancer and its treatment, the emotional aspect was even more challenging. I began to question the identity of the woman who looked back at me when I looked in the mirror. She didn’t seem like me. I used to have energy, was competent, had strength—traits that were such a part of my identity. To not have those things was very difficult.
In the past few months I feel good and have gone back to being pretty busy. It’s fantastic not to worry if this is this the last time I’m going to do something with my kids. I’m not thinking constantly that I’m going to die.
Understanding Myself
These days I don’t spend too much time thinking about the cancer coming back. The episode when my CA 125 was elevated was extremely alarming, and I remember thinking, “I thought I was going to have longer. Is that it? Just 4 months?” But I don’t have that fear any more. For the time being I’ve made peach with thoughts about my mortality. It helps to talk about it with friends who are also dealing with cancer.
I’m fine now, but things could change. Life and death are so much more real to me after this experience. I’m spending more of the time that I have with my kids, nurturing them. I can also exercise again, do yoga, go hiking, things I love to do. Most of my days are good days. I’ve started a podcast and am busy developing it and understanding the stories I’m trying to tell. It’s been really fun watching it grow and having a platform to reach people. I’ve been widening my network of people I’m connected to, which has been the number one good thing to come out of this experience. This is totally driven by me, which gives me great freedom.
Having a regular appointment with my psychotherapist helps get me through the bad patches. She specializes in working with cancer patients, and I find it invaluable to have someone who can help me parse through all that has happened and is happening. To have that support is so important. I also have a few close friends who I turn to for support.
The depth to which I needed support from others while I was going through treatment surprised me. Coming to understanding myself in a new way has been the surprisingly rewarding aspect of this ordeal.
Note:
Diane had a recurrence of ovarian cancer in 2018 and was treated with surgery and chemotherapy. At the conclusion of this treatment, she began taking a daily maintenance drug designed to prevent or delay another recurrence. You can read the continuation of her story and listen to her podcasts to learn more.