The local chapter of National Ovarian Cancer Coalition kicked off September, Ovarian Cancer Awareness Month, with a fundraising event hosted by Illusions Salon honoring one of their own, Nancy Buehler. This is Nancy’s story:
The date was June 19th, and it was 4am.
My belly had suddenly begun to grow alarmingly, and my husband insisted we needed to go to an emergency room. The news at delivered brusquely by the ER doctor, who said, “You have masses growing on your ovaries, and it has metastasized. I’m so sorry.” And with that, he turned and strode out of the room. Even though this is a paraphrase, the brevity of it was what allowed my husband and I to remember most all of what was said. It was a brutal way to learn bad news.
I was 61 years old at the time. Both my husband and I initially refused to believe a cancer diagnosis. Cancer happened to other people. I had taken care of myself. I never got heavy, I ate right, I exercised. I had no cancer in my family. Both of us were stunned.
Two days later, I had surgery. The cancer was typed at Stage IIIC. I had a complete hysterectomy, a removal of as many of the tumors as the surgeon could get to, and a removal of the omentum, which itself contained many of the tumors.
I went home five days later, in the afternoon. Following dinner about twenty-four hours later, I suffered a catastrophic hemorrhagic stroke in the right frontal lobe of my brain. My left side went limp entirely, and I spent the next several days in the Critical Care wing of a Tucson hospital. I was intubated as the doctors waited to see if my brain would stop bleeding and swelling.
Once the tube was removed, and I was able to breathe on my own, I was moved to the Physical Therapy floor of the same hospital. One week later, I started chemotherapy for the cancer.
Women afflicted with ovarian cancer often have sought medical help for discrete symptoms.
Looking back now to the symptoms leading up to the diagnosis of Ovarian cancer, I am struck with how many opportunities I had to be successfully diagnosed at an earlier stage.
Abdominal, pelvic and lower back pain
For about three years, I had dealt with pain in my side. After many complaints to at least two doctors, the diagnosis was a bad gall bladder. When the gall bladder was removed, about 18 months before the cancer diagnosis, it actually was damaged, so everyone concerned imagined that the problem had been fixed. But the pains in my side persisted.
Urinary Issues – Frequency, urgency, infections
At the same time I had the pain in my side, and even before the gall bladder surgery, I had recurring and frequent bladder infections. Or so I thought. They hurt like bladder infections, but on a couple of occasions the doctor reported that there were no white blood cells present. As a last resort, my husband and I went north for an appointment with a doctor in a nationally prominent clinic, who also reported finding no white blood cells. Nothing abnormal, the doctor said. “Probably rough sex”, he said.
Then came the diarrhea, in the last several months before the cancer diagnosis. Doctors dismissed it as a consequence of the gall bladder removal. But it went on for a year.
Abdominal bloating or fullness
Through all of this, my tummy started to swell. No amount of dieting would reduce my waist size, and I started to think that it was just a function of my age. But it continued to grow.
Loss of energy
Finally, I was overwhelmed with fatigue. Numbing fatigue, the kind that gives you no say in whether you need to sleep in the afternoon. Sometimes I thought if I didn’t sit down or lie down, I would fall down.
But nobody connected the dots. All of the symptoms were, taken discreetly, able to be explained away as the consequence of something like the gall bladder removal. And the truth is that I came to my doctor with one symptom at a time, to be treated individually.
The symptoms of ovarian cancer, individually, might be dismissed, but persistent symptoms should be addressed.
Had I to do it over again, I would absolutely say, “I have too many bladder infections, pain in my side, terrible fatigue, my belly is swollen, and I can’t get very far away from a toilet. What’s going on?”
So I had my first three chemotherapy sessions in the hospital, where I stayed for a little more than two months in the Physical Therapy section, recovering from the effects of the stroke. I had to relearn to swallow, eat, tell time and read. My left hand came back before the rest of the arm, but I had some use of both of them by the time I went home. The left leg has never fully recovered; the region of my brain that controls the hamstrings has been damaged. Nor will my ankle cooperate. I have foot drop that limits the use of my left leg.
I came home in a wheelchair, but graduated in a few months to a walker, and from there to a cane with the help of a Bioness device fitted below my left knee that stimulates muscles to lift my ankle and toes. With that, I can carefully and slowly, walk.
The first chemotherapy regimen lasted approximately six months. I lost every stitch of hair on my body (Taxol and Cisplatin), but it kept the cancer at bay for nearly a year. When it came back, I had some frustrated, nervous nights. Again I was prescribed chemo for another six months, but the final CA125 numbers were averaging 15, and I thought, “That’s that.”
Then in November of 2012, the cancer returned once more. This time–nine months later–the chemo treatments haven’t worked. So far, I have had to resort to radiation treatment for a tumor that has grown in three months from the size of a small lemon to that of a large softball. The radiation is intended to shrink the size of the tumor, or kill it, and allow a return to chemotherapy. My oncologist has already told me that when chemo starts again, it will be a new drug, the fourth chemo drug in nine months.
As I try to make sense of what’s happened in the last three years, the truth is, I can’t. I can’t understand how I could have been so healthy and, so quickly, catastrophically ill. As strange as it sounds to say it, the stroke has been far worse than the cancer. The cancer may one day take me away, but the stroke has robbed me of much of whatever life I had left. (I wish I had known the symptoms of ovarian cancer when I had so many common symptoms.)
I try to remain upbeat that the cancer can be successfully treated. Miracles do happen. I have hundreds of people who keep me on prayer lists. I have many, many good friends who have been supportive. I appreciate the support of my family, and I have trust in my oncologist. The rest of the story has yet to be written. I’m hopeful to be able to write the sequel in 2014. And more beyond that.
Nancy encourages women to know the symptoms of ovarian cancer and to challenge their health care providers when faced with the symptoms of ovarian cancer not with the question, “Is this ovarian cancer?” but “Prove to me it isn’t ovarian cancer.”
All month TMC for Women has been sharing the stories of local women who have faced ovarian cancer. You can read their stories here
The National Ovarian Cancer Coalition raises the voices of survivors and victims’ families, to raise awareness, to end the silence, so that women know the symptoms. Our local Tucson chapter provides support and focuses on awareness and education. Check them out on Facebook.
September is Ovarian Cancer, Prostate Cancer and Childhood Cancer Awareness month.
If you were given the chance to save one person you love from a cancer diagnosis would you take it? Here is your chance – The American Cancer Society is currently registering and enrolling Tucsonans for a longitudinal study (CPS-3) and Tucson Medical Center will be an enrollment site. It takes about half an hour for the initial appointment, a little time filling out a survey, no cancer diagnosis other than basal or squamous cell cancers, and between the ages of 30-65. For more information watch ourTMC for Children blog for an upcoming post with a personal story and the importance of CPS-3 and check out the American Cancer Society’s page.