My name is Amanda Kelly, daughter of Vonnie Kelly. My mother often told me to speak up and share how I felt. This story is a testament to her very spirit and to the beautiful things she passed on to us all. Her generosity was overwhelming. She was the truest friend I ever had. The creation of Charlene’s Light has brought great comfort to me, as I know that I am carrying out my mother’s wishes to share information and provide support to others.
I struggle to wrap words around such an intense family experience like losing a mother to ovarian cancer. The deep loss of losing a parent is so hard to put into words. Losing my mother was an incredibly sad and painful journey. The diagnosis, the emotional chaos, watching her battle on a daily basis. Watching her lose. Facing it together with my father. So many questions. So many emotions. Everything so fast.
My mother died on August 5th 2009, just four weeks to the date before my own wedding. The year 2009 came with a whirlwind of events: My father had a triple bypass just a couple of weeks after my mother suffered a severe stroke, both parents in the hospital at the same time, all the while I lost my good friend at the age of 30 to her own battle with cancer, and preparation for a very special day in my life, my own wedding. A wedding for most women is their dream to have their parents give their blessing and share in the special festivities. For me, it was a day of sadness, as well as, joy. We were so fortunate to have a wedding blessing in the hospital a few days before my mother passed. I wore my wedding dress while my husband wore his tux; that blessing will live on in my memory forever. While my mother was unable to attend in person at our wedding, I know she was present in every moment of our special day!
Many of my friends were unable to prepare me for the passage rite ahead, simply because they had yet to lose their mothers. However, I knew other daughters had faced the same heart-piercing loss. I belonged to a sisterhood now—one every woman must eventually join unless her mother outlives her. Baby showers herald the transition to motherhood. Roses, greeting cards and invitations to lunch celebrate mothers every May. Yet, despite our culture’s motherhood mystique, no rituals mark the psychological journey we daughters begin when our mothers die.
When I see women my age chatting with their mothers over lunch, I wish them many more outings together. And when I hear that a woman I know has lost her mother, I do what other women did for me. I write a note, share a memory, offer whatever help I can. I’ve come to accept the yearning that blindsides me when something wonderful happens-a baby’s birth, a wedding-and my mother cannot share it with me. Today, I speak up about the ovarian cancer foundation. I truly believe it is all about spreading the word. To me, there’s no better way to honor my mother.
Ovarian Cancer is called the silent killer because of the way doctors and women explain away the symptoms as vague. A little bloating, my mother had rationalized away as a recent change in her diet. The fatigue and lower back pain, simply a symptom of aging. Not until she started to have trouble with moving her hands and difficulty walking because of the swelling in her legs did we know something was definitely wrong. In 2006 after a plea from my mother and father to receive a referral to Mayo Clinic in Rochester did we determine that she had ovarian cancer. We had no idea the signs and symptoms to look for, and we had never heard of a CA125 test in our lives. But, that very test determined that she had ovarian cancer. While a normal individual should have a CA125 test between 1-30, my mother’s was well over 1000. She had a very rare form of ovarian cancer called palmar fasciitis in conjunction with ovarian cancer. This “silent killer” wasn’t silent anymore. We were told the ovarian cancer was in stage IV-C. And so began a very different path for us. The gravity of what was happening all around me was setting in.
My mother and I felt there was a lack of resources. My mother and I were talkers, as well as, doers. Where did the other woman go to that received this news? Where were the other daughters who had experienced this? Where were the husbands who had to go through this similar pain of being a caregiver? We had wanted to hear their voices, their stories. If not for the wisdom they could impart but also for the solidarity. To know there are others that understand, that can relate, is a great comfort at a time of great chaos.
Upon my mother’s death, I made the decision that I could either be angry that this “silent killer” took my mother’s life or I could work hard to do something about it. My search began for a foundation that I could be a part of that could personally touch other women’s lives. I was blessed to find Charlene’s Light, a foundation for ovarian cancer. It was a different kind of foundation. A foundation centered around support for women and hope for caregivers. It truly was a foundation that cares about each and every person. The foundation holds a special place in my heart as I continue to do the work that I can down here while my mother continues to inspire me from above. My mother’s compassion to give back in every facet of her life has remained alive in me, and I am passionate about wanting to make a difference in this lifetime. She taught me how to love, how to communicate, how to care for others, but most importantly how to have hope when some days feel hopeless.
I have been told many times that I am my mother’s daughter. We are similar in many ways, our hands, our skin, our tireless effort to make a difference and help others. Does this mean we have similar ovaries? Before my mother passed, she did suggest I see a gynecological oncologist so this question could be addressed. I cannot urge women enough to seek another opinion if your doctor tells you not to worry or that nothing is wrong. YOU know your bodies best. I went to see my own gynecologist, informed her of my new family history and was met with care and understanding. I was told to have CA-125 BLOOD TEST every year. Heredity and ovarian cancer leave much gray area. I am at an elevated risk for ovarian cancer. I have to pay attention. It is unthinkable to ignore the lesson my mother’s late diagnosis is trying to teach. I don’t want to face it. I have to. I don’t want to believe that I too could have to leave my family prematurely. I want to see my own children and grandchildren. I can’t look away any more. I have to face this ovarian cancer. I have to outsmart it. I have to help others navigate these same waters. I’m on the offense now.
Time above all other things has helped to heal me. I have come to learn that there are things you can do to stop ovarian cancer. You can make people aware of its presence. You can educate doctors. You can educate yourself. Ovarian cancer has taken from me one of my greatest gifts, my mother. In response I have committed to fighting back against it. I do so in the name of my mother, Vonnie, a beautiful example of a courageous woman who battled her own journey so that others could learn from her example. I do so in the name of all women both past, present and future!
Jo Ann B.
My name is Jo Ann B. and I was diagnosed with ovarian cancer in January of 2005. As is often the case with ovarian cancer, symptoms did not appear until a late stage. They involved cramping, pain in my left side and abdomen, pelvic pressure, spotting in menopause (which I didn’t know was a problem), and flatulence (when I had eaten no cruciferous vegetables or other foods to cause it). When I called to make an appointment with my ob/gyn, she got me right in. I had a CT Scan the next day, and she called 3 days later to give me the terrible diagnosis over the phone.
I knew nothing about ovarian cancer or staging. When she told me I was stage IIIC, I had to ask her what that meant. She told me that it was advanced and had metastasized to other parts of my body. She said that it was too extensive for her to operate and that she had made an appointment with a gynecologic oncologist for a consultation. It was 17 agonizing days between my diagnosis and consultation, but I was assured by many professionals that this physician was worth waiting for. They were right! He was positive, confident, and very personable. He immediately put my husband and I at ease, but most of all, he gave us hope! He even called another surgeon in for consult whose expertise was hepatobiliary and liver transplantation, as I had a lesion on my liver.
It was another 19 days before the operating room schedule could mesh with that of two prominent surgeons. When I finally had my surgery, it involved a hysterectomy, the removal of a tumor the size of a cantaloupe, my spleen, omentum, gall bladder and most of my colon, plus the addition of a colostomy. Since then I have had 5 more abdominal surgeries: 2 for recurrences, which thankfully were caught early, and 3 for bowel obstructions. As I have only a stub of large intestine left, I now have an ileostomy for life, which has its own set of problems. In addition to the surgeries, there have been 50 chemo infusions. A colorectal surgeon as well as my family practice physician has worked closely with my gynecologic oncologist throughout my treatment.
The last 8½ years have not been an easy road to travel, but with the Grace of God, my amazing medical team, and the love and support of my family and friends, I have been truly blessed. I lead a full life, and continue to have hope. We rely heavily on those CA-125 blood tests every 3 months, so if there is a problem, we can get it early.
Thinking positive has also been instrumental in my healing, and I credit much of that to my good friend, Kris Greer, who is the most positive person I know. Kris is tenacious in getting the word out to women, med students, and physicians about the early recognition of symptoms, as an early diagnosis is so important! You must pay attention to your body. When you know there is a problem and you are brushed off by a physician saying that it is gerd, IBS, a fibroid, diverticulitis, extra weight, etc. then you should consult with another physician, and yet another, until the correct diagnosis is made and you can get the treatment that you need.
After any gynecologic cancer diagnosis, it is instrumental to have a gynecologic oncologist as your surgeon. This is a highly trained, experienced specialist who is with you for your consultation, surgery, treatment, and follow-up exams. It is all-important to have this continuity. Survival rate and outcomes for women with ovarian cancer vastly improve with gynecologic oncologists.
My name is Kristine Greer. I’d like to share my story – a personal story that changed my life. It’s a story that left me passionate about trying to make a difference in the fight against ovarian cancer.
It was six years ago on a warm summer day when a phone message from my gynecologist first brought news to me that I’d have to begin a courageous journey. I was up against something called ovarian cancer – and it all started when I went to my doctor for my annual exam and a large grapefruit-sized fluid filled cyst was discovered on my right ovary. Now my doctor suggested waiting a month and then repeating the ultrasound, hoping that this big cyst would disappear. I was confused about this cyst that didn’t belong in my body! So when I got home that day, I pulled into the garage, jumped out of the car and ran across the street to my neighbor’s house. He is an ob/gyn doctor and I trusted his opinion. When I asked him about waiting a month and then repeating the test, he gave me this advice: Kris, it’s reasonable to wait one month, but no longer. Cysts don’t belong in the body – they belong in the lab. They can change. And he was so right! Over the course of that month, I could feel the cyst growing. My abdominal muscles were beginning to hurt. It was bulging out of my abdomen.
And I did what the doctor suggested – I waited a month and had the ultrasound repeated ….but that cyst didn’t disappear. It grew and it changed. And that’s when I heard the message on my phone …”Call me immediately”, my doctor said on the recorder. My heart stood still. And she insisted I come straight to her office. And so my journey began. My simple fluid-filled cyst had turned into a football-sized malignant tumor and I needed surgery immediately. There was another problem. Due to complications from a rare disease I have, anesthesia wasn’t an option. It could kill me, so I couldn’t be put under.
We consulted with my Mayo Clinic doctor who treats me for this disease. A decision was made NOT to put me under ….it was way too risky! So I needed to face this surgery awake, with a spinal and hope for the best. Now it’s difficult to prepare yourself mentally for surgery, especially when you have to be wide awake….and wondering what the outcome will be.
To say I was scared is an understatement. As I was lying on the operating table, watching the doctor’s faces, I knew I would NEVER forget the look on my surgeon’s face as she lifted the tumor out of my body. Her eyes locked with the anesthesiologist’s eyes – in a look of disbelief. I took it all in….the ticking clock on the wall, the request for specimen cup after specimen cup for more nodes….and the worried look on everyone’s face.
Three and a half hours later I was wheeled into recovery. My surgeon waited with me for my husband to be brought in and told us together that I had ovarian cancer. I just kept thinking ….okay, okay, I am still here…. I can’t believe she just said those three dreaded words to me ‘you have cancer’ but I’m still here. Cancer is a very powerful word.
Now fast-forward two days later, when my surgeon walked into my hospital room. That day will forever be etched into my memory …when I was told I had stage III ovarian cancer – and that my odds of survival were slim at best. It was stated so matter of fact-like. As if she was telling someone what she wanted on her pizza! My head started spinning and time stood still. I remember staring at the clock on the wall…. I remember her blue skirt, her pretty shoes…even the height on her heals …and the fearful look on my husband’s face, the sound that came from his mouth as he was gasping to breathe….the sun streaming in the window…and seeing my life flash before my eyes. I recall with clarity that is all too real what it’s like to face your mortality. And all I wanted to do was run out of that hospital room – and LIVE! Well, I certainly was in no shape to run, but I did insist on going home immediately. I wanted to get as far away from the hospital as I could! My surgeon released me reluctantly, and I never wanted to see her again.
We went home and I spent that night wide awake….wondering what it would be like to die….would it hurt? How will my husband and kids manage without me? Morning came and my surgeon called on the phone. She was the last person I wanted to talk to. Thankfully, my husband talked to her and she told him that Mayo Clinic had just called her. They had received a sample of the tumor and discovered it was a very rare form of ovarian cancer and wanted to see me ASAP. So a few days later, we were off to Mayo and I was fortunate to be treated by a brilliant, caring oncologist. And I’m so elated to say that with the help of God, family, friends and Mayo Clinic, I AM ALIVE!!
There’s something I’d like to say about my doctor. She was a very skilled surgeon, but she lacked what I consider one of the most important tools – and that is hope. Hope is crucial. Hope and a belief that you’re going to make it! Yes, I received excellent medical care, but equally important in my opinion is a positive attitude, which is so vital in healing and staying well. Now I never asked ‘Why me?’ but instead thought, well, okay it is me. And now what?? Well…I’m going to live, that’s what I’m going to do!
What was a very frightening and difficult time, was also a beautiful time in my life. I felt so loved and supported. Every time a friend dropped by with a meal or I opened up a get-well card, I wanted to cry. The outpouring of love was overwhelming. I truly found blessings in this whole cancer experience. So in a sense, illness can be a great reminder to us of how fortunate we are.
Yes, I have hope and I continue to live my life with a positive attitude. I honor each day. I treasure my loved ones …and I don’t take a single day for granted.