My Story | Cathy B., Ontario, Canada
I'm a relatively confident gal of sometimes above-average intelligence. I live in a city just outside Toronto, am 39 years of age, married and childless, originally by choice, lately by disease.
If someone asked me to describe, in a sentence, what this past year and a half has been like for me, I would say "I was beamed aboard an alien ship, against my will, to be probed, dissected, chilled, numbed and fried, only to be 'dropped' back into my old world to act as if it didn't happen at all."
My ride with cervical cancer began in December 1998. For months before the visit to my MD, I sensed something was not right. I had an unusual discharge on/off for months. I was over a year behind on my annual PAP smear. Off I went for my appointment, fully expecting the diagnosis of some sort of infection. The doctor literally gasped at the state of my cervix and the spreading tumour within it. Despite the fear of possible cancer, I naively continued to hope that my medical 'cross to bear' in my life was either heart disease or stroke, because that was my 'familial' connection....that was in my genes. Cancer didn't live in the bodies of my ancestors, so it wouldn't live in mine...or so I thought.
I was referred and deferred to specialists and diagnostic testing and after three painful biopsies it was clearly identified as squamous cell cervical cancer, Stage 2b. I live in a country that prides itself on its universal health care, however, it is currently a system that is horribly underserviced and underfunded. Despite the fact that my cancer-related doctor's visit happened in early December, the treatment that was supposed to save my life did not begin until early February. Eight weeks of unimaginable horror. With a tumour 'oozing' from me, I expressed concern about the delay in radiation and was told it was still 'within acceptable limits'. I was numbed by the diagnosis and had no emotional strength to champion my cause.
What we EXPECT from our doctors and medical care is COMPETENCY. The thing we most DESIRE, I believe, is COMPASSIONATE and THOUGHTFUL care. I don't believe making me wait two months for treatment was either compassionate or thoughtful. I also believe, in my case, it was potentially deadly.
It was decided that my cancer was too far advanced for surgery, so five weeks of external radiation, followed by brachytherapy (three days internal radiation in isolation in the hospital) was planned. Currently it is protocol to prescribe chemotherapy as well, but this modality was just 'in the news' when I started and my questions about it were largely ignored.
Within three weeks of beginning radiation my ovaries ceased functioning and I was sterile. I was fast-forwarded into menopause. I was told that, after treatment was completed, the internal scarring from radiation (stenosis) would make sex painful and examinations difficult if I didn't 'use it or lose it'. I was horrified and terrified. I remember thinking, during visits where a nurse would tell me to use a dilator or have sex regularly, that I was starring in my own personal horror movie. As if having cancer wasn't enough, that 'sacred space' that all women everywhere treasure, was utterly violated and shaken.
As I gained back some of my emotional strength, I began to search for information, support and hope. I sought out counseling but felt no one truly could connect with the side effects of having a gynaecological cancer. I searched for formal support groups and literature on the subject from all our local cancer-related resources. There was, unfortunately a whole lot of nuttin'. One group sent me a booklet titled "Pap Smears Can Save Your Life'...I liken that to putting on the parachute, after you hit the ground!
As I was struggling with the side effects of radiation treatment, I began to stumble upon a few Internet sites that could answer even my most intimate questions. I joined an on-line support group, much like Eyes on the Prize offers. Meeting a community of women who shared my journey saved my sanity. I felt 'connected' again. There were thousands of women, just like me, who felt alone and stigmatized by their 'below the belt' cancer. I turned to these women for support, when it was discovered that the treatment that had a 70% chance of saving my life, had failed. CT scans showed suspicious activity in the pelvic and abdominal areas, but when the lumps appeared on my neck, the guessing was over.
I don't know if the delay in treatment contributed to the cancer spreading to the lymph nodes throughout my body. I do know that I could have used the kind of power in the beginning that comes from accurate information and support. It's hard to seek answers when you don't know the questions.
My recurrence meant, from a mainstream medical point of view, little hope of a cure. Any treatments offered me now are from a palliative perspective. I am in a clinical trial for a new drug and continue to keep abreast of all of the latest medical advances. And, like so many searching souls these days, I continually seek out 'alternative' opportunities.
My sense of hope and confidence is fanned by the multitude of women who have walked down this road with me and know the bumps along the way as intimately as I. For them, and for myself, I work to open the doors of the gyny cancer closet and let some light in. I consider it an honour to help, encourage and enlighten and I credit this cancer for raising my consciousness. I am motivated by a Don Quixote quote in "The Impossible Dream" from the musical Man of La Mancha:
We remember Cathy, an EyesOnThePrize.org founder
April 22, 2001
Our dear friend Cathy Black passed away early this morning, April 22, 2001, of cervical cancer. She died quietly in her sleep with her husband and sister at her side.
Cathy was a dynamic part of this community and one of the founders of EyesOnThePrize.org. You'll see "Cathy B." throughout the site and hear her voice, full of humor, warmth, and compassion. The fact that EOTP is here and that you know about it, is in large part due to Cath's monumental efforts to help build this site, promote it in the press, and found a nonprofit organization to see that its work continues. She was our original PR person -- through multiple bouts of radiation and chemo and news of advancing disease -- and continued on our Board even after her illness kept her from doing day-to-day tasks. This site and organization has her stamp all over it and her spirit woven through it.
Cathy also started a gyn cancer support group at the Wellwood Resource Centre in her hometown of Hamilton, Ontario, Canada. A great believer in on-the-ground support groups, as well as the virtual support of EyesOnThePrize.org, Cathy wanted our EOTP site to be a hub to help women find support groups in their local communities. We rushed this function of our web-site on the fast-track so Cathy could see it before she died, though we are still filling the database:
Cathy called Sue D. last week when she was having a "good day" and asked her to relay how thrilled she was with the progress we had made on the site and on getting the word out about EyesOnThePrize.org. She was so proud to be a part of this important effort. We are often reminded of the song that inspired her throughout her cancer journey, "The Impossible Dream" from the Man from La Mancha:
Throughout her treatment Cathy devoted all the time and strength she could muster to launching the EyesOnThePrize.org site and nonprofit, always with a keen sense of humor and loving voice. And the world is better for this... "that one woman, torn and covered with scars, still strove with her last ounce of courage..." Her "impossible dream" was that no woman should ever have to walk through the nightmare of gynecologic cancer alone.
We at EyesOnThePrize.org are determined that that through our organization and its web community, Cathy's dream of universal support for gyn cancers will not be an "impossible dream." Until there is a cure for these cancers, we intend to honor her by being here for every woman who hears those dreaded words, "It's cancer." Her quest will not be in vain.
All of us "gynettes" behind the scenes at EOTP knew that Cath was nearing the end of her Race in this life these last few months. Still today we are devastated and are mourning her loss. It is inconceivable to accept fully that she is gone. She so warmly held each of us and everyone at EOTP close to her heart in a special and unique way. We will do our best to make her proud by keeping our weeping eyes on the prize in the face of such a crushing loss.
With much love for
her and for all of you who are part of the EOTP community,