Fear of recurrence like no other fear


Kathy LaTour blog image

I wasn't even finished with chemotherapy when I had my first panic attack brought on by the fear that my cancer had returned. I had one round of chemo to go when I made a phone call to an acquaintance about the use of the fellowship hall at our church. It was one of those calls where we were trying to organize two events that were supposed to occur on the same day in the same place. In the middle of the discussion she yawned, just as I suppressed my own, and we both laughed. She said something to the effect that she didn't know why I was tired but she was going through chemotherapy for breast cancer and was exhausted all the time. "Me, too," I gasped, as we forgot all about the meeting and began comparing stories. Seems she was dealing with a bit more of an issue than I was because her cancer was in her spine; she was metastatic, she explained, and yada, yada, yada. I didn't hear anything else after the word metastatic. Within 24 hours my back was in spasms of pain – real pain. I was sure I was dying from metastatic breast cancer. Even though I could intellectually connect my pain with our conversation, the connection was soon lost. My pain was my recurrence that had nothing to do with having just talked to someone who had metastatic disease. I had pain in my spine; that meant my breast cancer had metastasized. I was dying. As I write this today, 27 years since my diagnosis, I can almost feel the pain. It was so vivid. I called my nurse, Becky, and told her about the pain in my back and asked that she schedule a bone scan. She did. Two days later my husband and I went in for the results of the scan and what I was sure would be confirmation that my cancer was back in my spine. We arrived at the doctor's office and Becky put us in a room. A few minutes later she must have remembered why we were there because she popped back in the room and said, "By the way, the scan was fine." At that instant the room erupted. My poor husband hissed at me to never do that again. I hissed back that he should spend some time in my body. And Becky said, in the ultimate understatement, "You guys were really worried, weren't you?" Worried, no; sure I was dying, yes. A bit of explanation about what this fear does to a relationship such as ours. I was the information processor in the family. My role was the researcher. I knew the details on where to go and what to do, and when I said something, it was true. So my husband counted on me for information, and when I told him information about my cancer, he believed me. So, if I said I was dying, he believed me. This was a new world for both of us.We went home, and I noticed somewhere between the doctor's office and home that the pain was gone. No one will ever tell me the mind and body are not connected. I continued to deal with fear of recurrence almost weekly for the first year. My triggers were the usual: a strange ache or pain (ANY ache or pain), a celebrity was diagnosed, a friend was diagnosed or learned her cancer had metastasized. Actually, any mention of cancer by anyone usually sent me into hours of "what ifs."Remember that part of what makes fear of recurrence so difficult is that pain is the symptom of a real recurrence. I also had strong anniversary reactions that resulted in panic attacks. Holidays would often bring on depression – would this be the last one I would spend with my child? My worst fear was around Easter, and I have no reason why except it was spring and new life was all around, reminding me once again that mine could be shortened at any moment. My fear of recurrence persisted for years. I decided I would do a Thelma and Louise before I ever allowed my family to see me wither and die should my cancer recur. Then I had a friend who died of breast cancer and, while not beautiful, it was a healthy death, and it made me reassess my decision about my own life and death. Then about three years after my treatment ended, I finally couldn't bear the fear any longer. In my support group, we called it crash and burn. I cried all summer. I talked to the therapist who facilitated our support group about how to stop being so afraid.Then she asked me a logical question: What was I afraid of? I knew it was all about my daughter Kirtley and her life. I didn't want to leave her without a mother. I knew my husband would be a good father, but I wanted to be there. I wasn't afraid of dying, I was afraid of leaving my daughter.My therapist suggested I think of ways to resolve that. So, I enlisted friends who would take my place in the event of my death. My friend Terry would be there for her education, assisting with school choices and any education difficulties Kirtley might have. She would be hands on to help Kirtley with her school work and to talk to her about learning and keep the joy of learning alive. Terry ran a Montessori school, and she loved learning. Terry, knew what I meant when I called, and, through my sobs, asked her if she would be Kirtley's education mom. She said she would, of course. Next came household skills, cooking, sewing - all the things I have never been able to do, but wanted Kirtley to do. I called her Godmother Diana who could cook on all four burners at the same time. Diana can knit and sew and make all kinds of things. She too said, "Of course." Next came my friend Dianne who was already raising two girls, one of them my god daughter Allison. Oh, the shopping trips they took and the fun they had. I had a miserable adolescence in a family where my mom wanted to make my clothes, and she loved bright colors and stripes. There was no money for the beautiful fashionable dresses, but I was determined that my daughter would dress in the latest fashion. Dianne said yes, she would be sure Kirtley was dressed like all the other girls when she hit adolescence. My friend SueAnn was to be her spiritual advisor, the one to answer the questions about our mission in life and spirit's plan for us. A Methodist minister, she assured me, she would be present for Kirtley should I not be here. When I called these friends, none of them tried to reassure me or tell me I was going to live to be 100; they just agreed to take that part of Kirtley's parenting if I died. It was amazing what it did for me. I felt free and almost buoyant about death. I talked to my support group and the therapist. What did it mean? Was it a sign that I was going to die? No, she explained, it just meant that I had resolved my own death. She had heard the same thing from others who had crossed the invisible line from fear of death to acceptance of death. Did I want to die? No. Was I more prepared to die? Yes.Kirtley will be 28 this month, and she can't cook or knit, and she hates to shop, but we have had a few good discussions about the spiritual parts of life, and she made it through college. And I am still here. No longer afraid of what the future may hold.

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