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.

Sunday, September 1, 2013


     September is my birthday month! Yay! I'm going to be 50! Yay! A friend asked me how I felt about being 50. Now, I know that many people are upset over being half-a-century old, mainly because 50 is, well,  old. I know that nobody wants to be old. That is nobody except me, I want to be old. I have always wanted to be that kooky, funky, yet hip, old lady. I am starting early because my time frame has shifted. I always thought I would live to be 88 and planned my life as such. However, as you know, things have changed a little bit. I get to be kooky, funky, yet hip, now. I remember a time when I didn't know if I would live this long. I did! I am 50! Let the kooky, funky, yet hip begin....

     But before all that begins, I feel the need to share this....

     September is Ovarian Cancer Awareness month. The women who live with ovarian cancer, along with their family and friends, are very aware. The general public, not so much.  I will share a little story that exemplifies this.  I was once stopped by a stranger in a parking lot.  She asked if I had cancer. I'm pretty sure she could tell because of my rockin' hairdo. She said something I don't remember that made it obvious she was talking about breast cancer. I corrected her and explained that I had ovarian cancer. She exhaled a long sigh of relief and exclaimed "Thank god it's curable!". Bless her heart. It's not curable. She didn't know that, yet. I had to educate her. And I will educate you as well.

    Ovarian cancer is relatively rare. About 1 in 70 will develop ovarian cancer. In comparison, about 1 in 8 women will develop breast cancer. Despite it's rarity, ovarian cancer is deadly. Of those diagnosed, about 30% will be alive 5 years later. In comparison, of those diagnosed with breast cancer, about 85-90% will survive those 5 years. Ovarian cancer has a high fatality rate probably because the majority of cases are not found until the disease has spread throughout the abdomen. This is Stage 3 cancer and most of us, about 80%, are diagnosed at this stage or later, Stage 4. There is no Stage 5. The answer seems simple, find the cancer earlier.

   Ovarian cancer has long been called the "silent killer", presumably because it has no symptoms until its too late. There is no current screening test. I am here to tell you that there are symptoms and signs. Ovarian cancer is not silent, but it whispers, so you have to pay attention. Pay attention to these things: 
          1. Bloating
          2. Pelvic or abdominal pain
          3. Difficulty eating, feeling full quickly
          4. Urinary changes, urgency and/or pressure in the absence of infection. 
          5. Fatigue

These symptoms could happen to any of us on a bad day. The key is  frequency. If you have these symptoms almost daily for more than 14 days each month, please see your doctor. Ask your doctor to tell you why you do not have ovarian cancer. Ask for a pelvic/rectal exam, a blood test called CA-125, and a trans vaginal ultrasound if warranted.

     Be your own advocate.  This disease can be curable if found early. Most of us living with ovarian cancer would tell you that our own conditions worsened as we slogged our way through the medical system looking for a diagnosis. Most of us did not push for tests or answers. We did not know that we were dealing with ovarian cancer. We did not know the symptoms. This is the real reason why ovarian cancer is a silent killer, nobody talks about it. I'm talking about it. I'm telling you my experiences so that you don't have to repeat those same experiences. I did not know. Now you know.  Use your knowledge. Tell a sister, tell a friend, tell a daughter, tell a mother, tell every woman! 
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