Monday, September 30, 2013

Setback, again

     Today, many thoughts and feelings are swirling around in this head o'mine. Heck, not just today but the last few weeks. One will circle and land for awhile, almost long enough for me to get a handle on it, then its gone, only to be replaced by the next. One theme, that seems to be revisiting again and again, is "how do I live with this thing called cancer in my body?"

   I nicknamed my cancer Clive. That made it easier to talk about. I could say Clive when my mouth stumbled around the word cancer. I garnered strength when my friend said "kick Clive to the curb". We celebrated when Clive apparently was kicked to the curb. We told him he wasn't welcome. We thought he was gone. But Clive isn't gone. We may have kicked him to the curb, but he just moved down the street a little bit. After treating this first recurrence for several months, my doctor said that he doesn't think he can cure my cancer. Because Clive has shrunk to a  very small hard little nugget and the side effects of the chemo treatments were piling up, we stopped treatment. I was happy about this, elated to not be subjected to those drugs, and accepting of Clive's inert presence. That was the way I felt that day and many other days. Some other days, I am panicked by this setback. Other days I am angry. Some days I am struck by the grief all over again. On a good day, I go about my life.

   One day, I was going about my life when I read about a promising new drug in development for recurrent ovarian cancer. I had a burst of excitement and hope.  As I eagerly read further, I see that the trial is not for ovarian cancer. This drug is for someone else, not for me. My hopes were dashed, which subsequently ignited a little fuse of anger. Why do I get the advanced metastatic incurable cancer? Each time my hopes are raised then crashed again, it reopens the wound of grief, of loss. It's an emotional setback every time. I read ahead to the end of the article and saw that this promising new drug adds 2.3 months to survival time. 2.3 months?!?!? All this hubbub over 2 months?  It's only 2 months, someone else can have those 2 months. That's how I rationalized and closed up my grief so I can live my life.

   One day, I was going about my life when I felt the familiar gurgle of angry bowels. The artifacts from my cancer treatments affect my everyday life and it will always be so. I have had most of my small bowel and a large portion on large bowel removed over several surgeries for my cancer.  My guts are precariously balanced and any little unknown thing can wreak havoc. On this day, I was with my friends enjoying the autumn sunshine, good food and live music. I had forgotten about Clive. Until I was reminded by the gurgle. I made it home without any unfortunate events, but awoke later that night in a cold wet mess.  I was afraid to go back to sleep. The renewed grief that my body will never be the same was overwhelming. I angrily ripped the sheets from the bed, found the package of Depends in the closet, and cried myself back to sleep. In the morning. I finished the laundry, remade the bed and went back to living my life.

   One week, I was going about my life when I met some other women who share my diagnosis. This is rare, because ovarian cancer is relatively rare, about 1 in 70.  I met a whole gaggle of women in Goldcreek, Montana at Camp Mak-a-Dream for a weekend retreat for ovarian cancer survivors. I met women at every stage of treatment. These women all have setbacks. And yet, they do amazing things. They travel, they start foundations, they volunteer, they raise families, they live life. I benefited greatly from seeing these things. I saw survivors with 5+, 12 and 20 years experience. I stared with admiration.  They shared their wisdom with me and I collected it up with both arms. I saw what I could be. I saw that setbacks are temporary. We agreed that yes, cancer sucks. I saw how they lived their lives and realized that I could do that too. I saw that I am not alone. That's why I share my own experiences. Someone, somewhere, someday may need to hear the sometimes unsavory details of my life to feel better about her own life, to see that she is  not alone. In the meantime, I'll go back to living my life.


  1. No doubt you embolden with your words, and inspire those, like me, who cannot possibly comprehend what you continue to endure while continuing to live your life. We are enriched by your resilient nature and intrepid courage in sharing your experience, unsavory or palatable. Keep kicking fucking Clive to the curb. Sending you so much love and hope that your unwelcome tenant doesn't move any closer.

  2. You are a brave, strong woman , Kathy. You have good days, great days, and rotten, sad and scary days. I do too, and so do all of us who deal with this demon, who is like a gila monster, and just won't let go. Let me just say, I think you do a marvelous job. No one can expect to not have the bad days; that just wouldn't be normal in our situation. But make the BEST of the good days. That's what makes you a step above the rest. HUGS and LOVE.

  3. Sister Goose, we continue living our lives as best we can, and we're convinced that we gain strength from each other. I'm so glad you came to camp, and can't wait to see you again next year -- maybe we'll spot another bear! ;-) -- Kaye A.

  4. It was my first year at camp. Not feeling that strong the day you girls took the hike, I missed the camaraderie of the climb and the bear too. Your writing is so inspiring the way you keep on living, smiling and keeping your spirit despite Clive's occupation in your body. I look forward to seeing you next year because now I know why so many people return year after year. It's people like you who provide the glue.

  5. Reading your comments here and being in support group with you have really inspired me. I felt so alone not knowing anyone with a similar situation to mine. I can so relate to the stomach "gurgling" and not knowing what effects eating certain things will have--ups and downs.

  6. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam