September Is Ovarian Cancer Awareness Month

I met Kelly online. It was at one of those sites you go to when you need Ovarian Cancer support.* We chatted and chatted, and then decided we didn’t need to go through that site. We’ve been emailing each other ever since. Kelly is a wonderful, courageous fighter and advocate for this disease. She went to Washington to lobby two US Senators and two of Indiana's Congressmen in the House of Representatives to support funding for research. She walks in marathons to raise money, and serves as a patient advocate on the Quality of Life and Nursing committees for the Gynecologic Oncology Group. She's also working to start a local chapter of FORCE (Facing Our Risk of Cancer Empowered), a group dedicated to education and awareness among the BRCA1 and BRCA2 mutation population. Kelly lives life to the fullest, plus she participates in more clinical trials than anyone I have ever known. She does it because she doesn’t want other women and doctors to have to guess about “safe” levels of very toxic drugs, and she does it because she has to. The body can become resistant to the very drugs that are supposed to kill cancer cells. Kelly’s story is one of honor, beauty, love and faith.

Kelly's Journey

Yesterday, I had my 82nd chemotherapy treatment. The doctors and nurses at the hospital and infusion clinic have become like family. I am thankful that they are truly caring as well as professional. I think I have learned to be thankful for everything in my life. I'm not in denial. I know my prognosis.

My ovarian cancer journey began on June 28, 2006. I was a busy mother of 2 grown children working in a fast paced environment -- the operating room in a small community hospital. I was 45 and in the best physical shape of my life. I went to the gym 3 days a week, working out doing step aerobics, kick boxing and weight training.

I started noticing I was getting a little more bloated than usual and also was having some indigestion. That was highly unusual for me. My colleagues of nurses and surgeons thought maybe I was getting an ulcer or had some gall bladder trouble based on my symptoms. Ha, if only.

My family doc agreed that it could be my gallbladder so he ordered an ultrasound to check it out plus some blood work. I didn't get out of the lab before the ultrasound tech came and told me that I needed to come back to the diagnostic imaging dept. My doctor had already been notified of the results and a CT scan had been ordered. I knew this was serious immediately and calmly asked the tech what she had found. She looked at me with her sweet smile and said they had found some fluid in my abdomen.

That day and her smile will always stay forever burned into my memory. I was fortunate to be familiar with the medical community, anatomy, surgical procedures, etc., but none of it could prepare me for being blindsided by a diagnosis of stage III-C ovarian cancer.

Nothing! Not going to yearly physicals. Not getting all my screening tests, mammograms, pap smears, teeth cleaning on time. Not working out 3 times a week and lowering my cholesterol and eating a low carb diet. Nothing! How could I be sick? I didn't look sick! But reading my CT scan results for myself was like I was taking a ride through some alternate universe. Like time had just come to a screeching halt, or the world had started moving in slow motion.

One of the surgeons I had worked side by side with for many years proved to be a knight in shinning armor. He personally saw to it that I was in touch with the right people in the right places. Even getting me an appointment and talking to the nurses who would later care for me. He knew that the statistics show that anyone diagnosed with ovarian cancer must be cared for by a gynocological oncologist. So I went to Indiana University Hospital and Cancer Center where I continue to receive the best of care. I thank God for him steering me in the right direction.

Every day I became more and more bloated. By the time I had my debulking surgery to remove all the cancer that they could I had 7 liters of fluid, called ascites, in my belly. I looked like I was pregnant with twins and was extremely uncomfortable. The fluid accumulates quickly -- it was filling the areas around my lungs and heart. I could no longer eat and found it hard to breath. And so, a few days before my surgery was scheduled, I had to go into emergency surgery.

My first chemotherapy was administered before I was sent home. There was some debate as to whether I was strong enough, and some debate about whether we could wait one more second before starting to kill the cancer left behind. You see, the debulking surgery is to remove all the tumor they can find. Ovarian cancer likes to attach to the outside of all of your abdominal organs like a sticky goo. It also took over my ovaries completely and my omentum and was in the lining of my abdomen, which cannot be removed. Plus it was already traveling into my lymph nodes off of my aorta, running through my pelvis.

That was over four years ago now. Looking back the first few weeks after coming home and getting back on my feet were the most crucial. I had to wrap my brain around my new life. People were shocked at how I looked but I knew I was getting stronger. Seeing the tears in my 22 year-old son's eyes as he held me by the shoulders and whispered "Mom, you're so thin" was such a sweet moment. I just told him that it's OK.

You can say I am a fighter, but I think I just enjoy living. So every day that I could get up and eat and become stronger was a real joy. The first time I could do dishes standing at the sink was a joy! Whoever thought I would think that?

I have become very active in advocacy, education and awareness of this awful disease. I now know that I carry the genetic mutation of the BRCA gene that increases your odds dramatically of getting both breast and ovarian cancer. I also know that my daughter does not! What a joy since she has since blessed me with two beautiful grandchildren and they will not inherit this genetic defect from their grandmother.

Just tonight, Kelly stood tall on the pitcher's mound, and threw out the ceremonial first pitch at the Indianapolis Indians vs. Columbus Clippers minor league baseball game, as recognition for her volunteer work with Ovar'Coming Together, Inc., Indiana's non-profit ovarian cancer awareness and research funding organization. This month, she will also attend ovarian survivor's camp at Camp Mak-A-Dream, in Gold Creek, Montana, after doing a little rafting trip first!

Know the Symptoms. Know the Signs.

Ovarian cancer has been called "the silent killer" because there are no symptoms. But there are. A woman knows her own body, knows when things aren’t right. Symptoms can be vague, things we all experience from time to time. We ignore them. Doctors ignore them. But if they persist over a two-week period, the smartest thing you’ll ever do is to have them checked out.

• Pressure or pain in your abdomen or pelvis
• Swelling, bloating, gastrointestinal upset
• Frequent urination in the absence of an infection
• Persistent indigestion, gas or nausea
• Loss of appetite
• Unexplained weight loss or gain
• Difficulty eating or feeling full quickly
• Increased abdominal girth or clothes fitting tighter around your waist
• A persistent lack of energy
• Lower back pain

If you have even one of these symptoms and it becomes persistent, see your gynecologist for an internal exam and request a transvaginal ultrasound, a very simple test that can be done in-office. Ask for a blood test called a ca-125 that measures the level of an antigen, a protein molecule, that may be produced in excess when ovarian cancer cells are present. This is not a foolproof test, but if your ca-125 is well outside the normal range of 0-35, it's a very good indicator. A pap test will tell you nothing; it is for cervical cancer only. There currently are no reliable screening tests for Ovarian cancer.

*For Ovarian Cancer Support go to https://www.inspire.com

For more information about Ovarian Cancer, go to http://www.ovariancancer.org

To download a printable flyer to post where women gather, go to http://www.ovariancancer.org/beat/