September 30th, 2016
| Survivor: Mesothelioma
Fear. I thought I understood fear. I had faced a few and overcome them. I had been through a divorce and moved to a new city, without a job yet, where I didn’t know anyone. I faced my fears and trusted all would work out for the best and I moved forward. I got remarried, and we decided to start a family. I was faced with an entirely new set of fears upon learning I was pregnant. So much could go wrong! My fears were unfounded and the pregnancy went off without a hitch, until delivery. I found out after my water broke that she was in frank breech position and I needed an emergency C-section. Once again, so many fears reared their ugly head, but I trusted my medical team and within the next 30 minutes, our healthy baby girl was born.
As we fumbled our way into parenthood, our world was turned upside down. I thought I knew what fear was, but nothing prepared me for the myriad of emotions that flooded over me upon hearing I had a rare cancer called malignant pleural mesothelioma. I was told I had just 15 months to live. Fear. I thought of my now 3 ½ month old baby, my husband and not being around to raise her. I had no idea what I would do, how I would cope, or most of all, if I would even live!
People call cancer warriors and survivors brave, they refer to us as "Superheroes", but if they knew what went on in my head in those dark quiet hours of the night while I held my baby in my arms, tears silently slipping down my cheeks as I begged God to keep me around to raise her, they wouldn't think I was very brave. I didn't feel brave at all. I was afraid that the upcoming surgery wouldn’t work, I was afraid when I said goodbye to my baby to travel cross country to get the surgery that I may never see her again. I did some serious bargaining with God during those times.
Fear is so much a part of illness. You are all at once, thrust into a foreign world. Your life revolves around doctor's appointments, blood draws, scans and treatments. When you aren't at the doctor's office, or an infusion center, you are desperately trying to maintain some semblance of normal in your life. But the one thing that is always present, is the fear.
If you let it get away from you, the fear can be debilitating- it can manifest itself as many other things: anger, anxiety, depression. Often if left unchecked, fear can blow things so out of proportion that it will make you more sick. I vowed in those early days to not let the fear get the best of me. I had to have faith. Faith in my doctors, faith in a higher power, faith in myself that I could get through this.
What worked for me was using humor. My sister, Danna and I have a very similar sense of humor. Upon learning I would be having surgery on February 2nd, to remove my left lung affected by the cancer, she renamed Groundhogs Day, Lung leavin' Day, the day my lung left. Instead of a day of loss, we reframed it as a day of triumph, the day I was given my life back, the day I conquered my greatest fear. We now celebrate Lung leavin' Day every year. We commemorate the day by having a huge fundraiser party, inviting our closest friends. We take plates, write our fears on them, and smash them in a huge bonfire. It’s our way of taking ownership of the fears and showing them they have no power over us. So many people look forward to this tradition, and it's even caught on with others who have had similar surgeries. The simple act of recognizing those fears, and doing something symbolic to smash them makes a huge impression on them. I’ve had people tell me that they finally had the courage to face obstacles that had been holding them back…everything from eating disorders to divorce. It speaks volumes about how fear of the unknown can permeate our lives without us even realizing.
What I’ve learned in the last decade as a survivor, and being a patient advocate, is how to take ownership of fear. I tell people that burying and not addressing fear makes it grow in the dark. Instead, get those fears, anxieties, and obstacles out in the light of day, then send them on their way. They lose their power over us when that happens, and the road to recovery is a little easier.
The other thing I learned is it is ok to ask for help. I found a therapist who specializes in post cancer trauma. She was with me when my dad got sick with renal carcinoma and passed away. I found myself struggling again with fears, and a form of PTSD when my dad got sick. It brought back all the memories of my diagnosis and the unknown. She taught me to tap into what I had already known, but in the midst of trauma had forgotten. Meditation, recognizing and replacing the fear, and being gentle with myself at a hard time, helped get me through.
I still have moments, more than ten years after my original 15 month prognosis. I get a strange pain that I haven’t had, or I’m more tired than I think I should be, and my greatest fear starts creeping in. "It is back." When that happens, I stop, I look for a reason, and almost always there is a completely logical explanation for what is happening. I have learned to listen to my body, and understand my limits. I don't know if the fear will ever go away 100%, but learning what to do and how to deal with it, sure does make it easier. So maybe I really am brave after all.
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Photo courtesy of Reuters/Eric Miller & the Mesothelioma Cancer Alliance.
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