NANCY: 2007, AGE 53  

My Ca125 story begins like that of so many other women I have met who tested with ovarian cancer. My symptoms probably began in about 2002. At that time, I started having problems with my period, fatigue, bloating, etc., but was told that it was typical for someone my age (50) and signalled the start of menopause. I continued having regular HPV Tests with checkups for my PCP and was told that all this was “normal”. Throughout the fall of 2004, these symptoms continued to get worse and worse. I would sometimes go months without a period, and then it would return heavily for up to a month.

By December of 2004

The fatigue was so intense I remember arriving at work one morning (I have taught elementary school for 32 years) and crying in my car because I didn’t think I could walk up to the second floor of my classroom. Again, I went to my doctor, and she thought I must be having anxiety or stress and suggested an anti-depressant and rest up over Christmas vacation. Finally, I was so sick and tired of being sick and tired that my husband took me to the emergency room.

There, after many checkups

They found that my CA125 blood levels were so low from the loss of blood that I was so feeble that it had affected the amount of blood available for my heart to pump. I received blood transfusions and was sent home with iron and told again to rest. Every type of virus test was scheduled to determine what had caused this low CA125 level. Colonoscopy, endoscope, you name it, I had it (with the notable exception of a CA125, transvaginal ultrasound or CAT scan.)

At every test appointment with every type of HPV specialist, I went through the symptoms I’d been experiencing. I repeatedly suggested a hysterectomy since I had no intention of having more children. Every test showed nothing out of the ordinary. My PCP sent me to yet one more gynaecologist. After really listening to my story, he asked me if I’d ever considered having a hysterectomy since I’d had so many ongoing problems. I was so glad that I wanted to kiss him!

I was thrilled to have an end to the vague problems. finally

A pelvic exam and a transvaginal ultrasound before surgery showed all would be routine. I entered the hospital at 7:30 am on May 23 and woke up in a dark room. At about 8:00 pm,, the doctor told me the CA125 Levels were very high. The other exams validated that I had stage II ovarian type cancer. I was stunned that I had never heard of ovarian organ tumours, except I vaguely remembered Gilda Radner had died from it. I looked at the doctor and just said, “Cancer, positive test for HPV Virus cancer”? He nodded. I replied, “Like lose your hair and die from cancer”? He nodded again.

That night was my initiation into the club to which no woman ever wants to belong. I began a journey down the HPV Wormhole Test path that continues. to the end. After my surgery, I went home to face my new life in the “HPV cancer world”.

But there were more surprises in store for me.

During my last few days in the hospital, I’d had my first experience with terrific heartburn. The CA125 nurses assured me it was probably a result of the pain medications I was receiving, and I didn’t need any HPV or other tests. They tried Nexium; it gave me a rash and itching. So I went home Friday and promptly had my husband running to the store for Tums or anything that would help. Nothing did. Saturday, I sent him back with specific instructions to ask the pharmacist what the strongest over-the-counter medicine for heartburn was. She remembered my “heart incident” from the anaemia and called me home to make sure my heartburn couldn’t be a heart attack. I thanked her, explained everything that had happened the previous week, and assured her it was just heartburn. She sent Aaron home with more over-the-counter remedies.

By Monday (Memorial Day), the pain was so severe I knew it wasn’t heartburn.

My son and husband rushed me to the emergency room once again. It was a heart attack! On Tuesday, I had an angiogram, and on Wednesday, I had a cardiac catheterisation to install 3 stents in my heart due to blocked arteries. Five days later, home again to heal and prepare for chemo!

I initially completed 6 rounds of chemo with a carboplatin/taxol cocktail every three weeks. So, I then opted to do 12 monthly maintenance chemo doses of taxol only. I have lost all my hair, eyebrows and eyelashes and dealt with nausea and incredible fatigue, but I consider myself one of the luckier women I’ve met. Also, I have continued to teach and have found wonderful support and love from my family, friends, coworkers, and “my kids.” I have learned to appreciate the grace and joy of the simple things in life and believe the adage” don’t sweat the small stuff”.

Finally, I realise it is mostly all small stuff.

The awareness movement that has brought so much information and knowledge to the world about breast cancer now needs to be brought to bear to share with the world about OVCA. The symptoms are vague and common (bloating, fatigue, etc.), so it is often diagnosed too late to cure. As one doctor told me, “If all women have the CA125 Test, they don’t need to know the symptoms. And my waiting room would be filled with middle-aged women”. The motto of the National CA125 Ovarian Cancer Test Coalition on our teal jelly bracelets is “It whispers, so listen.

Women need to listen and speak up about our bodies! Then let’s hope waiting rooms will be filled and lives will be saved earlier. Our lives, the lives of my “sisters” fighting this disease daily, and the lives of our undiagnosed sisters and daughters depend on this.

Nancy T

Portland, Maine

BEVERLY: 2007, AGE 64  

I want to tell everyone HOW IMPORTANT mental attitude is. My mother just passed away after being diagnosed with an HPV-type Test many years ago and the subsequent ovarian viral disease one year ago. She was 65. From the moment she found out, she lost the will to live. She stopped going out anywhere. She would not see her friends. At one stage, she even spent time in a psychiatric facility, heavily drugged up. This went on and on. I did not return home to see her as it seemed pointless.

My brother said she did not even know who he was- she was so out of it on drugs, etc. My dad loved her so much, too. She had everything to live for but would not fight- at all. I found out from my brother after she passed the other day that she told him she didn’t think we needed her. Now she is gone, and we are devastated. I cannot believe the pain and that I will never see her again. I am 30, but I feel like a lost little girl.

To all the ladies out there with kids

No matter HOW OLD they get or HOW FAR AWAY they may live, they will ALWAYS need their mothers- ALWAYS!!!! Even if you don’t hear it from them, it is TRUE!!!!

Just because we may argue and disagree with you doesn’t mean we don’t love or need you. It just means that we are finding our way. Every daughter takes great comfort in knowing you are there for her no matter what, which is huge for girls of all ages.

So please, this is to all ladies- be positive and strong.

Don’t be afraid to reach out for CA125 Medical support tests from all around and take support from the ones who may unexpectedly offer it. It is a beautiful life worth living, and many around you love you even if you have the terrible HPV variant and need you dearly, even if they never say it. Now- to all the daughters- no matter how difficult she can be, pick up the phone and tell her how much you love her and that you will always need her- you will be glad you did.

God bless all ladies and the men who help support us all.