My sister, Brenda Bingham Anderson, was at low-risk for having ovarian cancer because she was less than 60 years old (nearly 52 to be exact), had given birth to 7 children, and breastfed them all.

Yet her story of delayed diagnosis is classic—she had symptoms of urinary incontinence that she and her doctor attributed to the fact that she had given birth to so many children. Her next set of symptoms was significant bloating and some abdominal pain. At the time neither she nor I knew the warning signs of ovarian cancer so when she described her symptoms to me, as a nurse, ovarian cancer did not come to mind. She said to me, months before being officially diagnosed with cancer that she was willing to go through all of these tests because she wanted to make sure she did not have cancer.

Her general practitioner sent her to a GI specialist, who spent months doing tests on her bowel. He was sure she must have some bowel issue and did not think beyond the bowel. In fact, none of her doctors ever considered ovarian cancer despite the fact that the bowel tests kept coming back normal.

One evening after dinner, her daughter-in-law saw the pain she was in and asked her to show her where it hurt. My sister pointed to the general area and her daughter-in-law said -- that is right where your ovary is. No one had made that connection before.

Soon after this discussion her abdominal pain worsened and through the weekend she was referred to a surgeon who thought that she may have a bowel obstruction. The surgeon recommended emergency surgery despite the fact that all of the recent tests of her bowels had shown them to be normal, and there was no good explanation as to why she would suddenly have a bowel obstruction.

The physicians caring for her work in a small rural hospital and although she may have needed emergency exploratory surgery, they did not recommend that she have surgery in the larger hospital that is only 45 minutes away.

Brenda had every strike against her since several months had now elapsed since she had first sought treatment for her symptoms, and her initial surgery was not done by someone with expertise in gynecological surgery (the best outcomes are dependent on the expertise and skill of who does the initial surgery).

I remember when I got the call telling me that she had stage IV ovarian cancer. I knew it was bad but I was not sure how bad until I read about ovarian cancer and asked questions of some gynecological surgeons with whom I worked. It was obvious based on what I read and their responses that the situation was grave; it would be unlikely for Brenda to live for many more years.

Knowing the connection between mind, spirit, and body I wanted to help her enjoy the time she did have left with us so we concentrated on how to help her live the rest of her life. I will always be grateful that we had some warning that her life would be cut short. However, I am haunted by the fact that had her cancer been identified earlier on she would have likely had even more time with us.

Brenda had much she wanted to live for and many people who love her and wanted her to live longer. Through aggressive chemo treatments and the loving support of her husband and family, she was able to live for only 3 years after finding out she had cancer.

These years were precious years for all of us, but in particular for her youngest daughter who was only 14 when she found out her mother had cancer, and who was 17 when her mother died. However, Brenda was too sick to ever travel again and many of her pre-cancer plans would never come true.

Because of her love of art, the long distances between us (I lived in New York City and she lived in Utah), and her desire to have had a chance to see more of the world I decided to send her a postcard every week. The postcards were a way for us to be close and were my attempt to cheer her up each week given all that she had to go through.

Brenda did truly live during the years after she found out she had cancer. I learned much from her about finding joy and peace in the midst of great trials.

Because I am a nurse and I am the only person in the family with any clinical training there were many experiences where I tried to help long-distance. I witnessed time and again that clinicians assume that people know more than they do, and that clinicians don’t always connect the dots for people or themselves. They often just want to perform their one task and not worry about where that task fits in the big picture. For example, one Friday morning, I called her and learned that she was unable to keep down food or fluids. She was having bags of IV fluids sent to her but there was no plan for how to get the needed solutions administered to her over a weekend.

Brenda was not one to complain so it was lucky that I called her and helped work out the plan for the weekend before it was impossible to reach anyone. Her basic assumption was that she could trust people to be competent and to provide the care she needed.

Ultimately her trust in following the advice of medical personnel led to the final assault on her body that cut her life shorter and caused her excruciating pain. What happened was that her bowels had stopped working because of radiation therapy, and her doctor wanted to x-ray her bowels to determine the best course of action.

Without knowing her history or her condition, she was told to follow the usual preparation for the test, which included drinking a prep solution. She followed the instructions as best she could and did not question whether she should drink the prep solution despite the fact that she had not been able to eat or drink regular food for a few days.

Once the error was identified she was admitted to a hospital where the clinicians worked to relive the pressure on her bowels that was caused by the prep solution. Her bowels ruptured a few days later despite emergency surgery and other treatments to try to relive the pressure. Although we know she would not have been able to live much longer, given the state of her body, I do believe that her death was made more painful and her life was shortened by a few precious weeks and possibly months.

For her youngest daughter the loss of these few weeks were probably the hardest to bear. This meant that her mother died when she was on a class trip in New York City and that her mother’s funeral was the same day as her junior prom. Her mother was unable to see her youngest daughter decked out in the beautiful prom dress she had designed and that her sister had sewn for her. Her mother was also no longer around to be with her during her final year of high school.

We all miss Brenda very much. Recently I visited her oldest son, his wife and their 4 children. I enjoyed my visit very much, but I could not help thinking how much Brenda would have loved to have been there to watch them sing, get and give hugs, and hear their stories. While I was there I was reminded of the great love Brenda showed her family and how much joy her children and her grandchildren (11 at the time of her death and now 15) brought to her life. We continue to miss her for the rest of our lives.

I am telling Brenda's story to honor Brenda's life and to help others be aware of the subtle signs of ovarian cancer, which are vague but typically include pelvic or adnominal pain, bloating, feeling full quickly when eating, unexplained vaginal bleeding, and changes in urinary habits, according to current research. I am also telling her story to remind everyone that from the time of a diagnosis forward
there is much more living to be done.