Sound Off 10-31-19

Oct 30, 2019 | Sound Off | 0 comments

To the editor:
I went to the Kid Rock concert (Aug. 29 at Put-in-Bay) and I couldn’t see him or hear him that well. Drove 3 hours to get there. I spent a lot of money on my tickets. Very disappointing.
Ellen from Ohio

To the Editor:
An estimated 270,000 people live in the U.S. with metastatic breast cancer and I’m one of them. Metastatic cancer, better known as Stage 4, develops when cancer cells that started in one organ, such as the breast, ovary or prostate, and spread to other parts of the body. Metastatic cancer is treatable, but not curable.

While every cancer diagnosis has its own challenges, metastatic patients are different. We will never have an opportunity to ring a bell and declare ourselves free from cancer. We always remain in one form of treatment or another, and so for us, a metastatic diagnosis is about time.

I first noticed a lump in the early 1990s and my doctor dismissed it as cyst and said, “…nothing to worry about.” I wish I would have taken the time to ask more questions. In the years that followed when I didn’t have an annual mammogram, I wish I would have taken the time to make it a priority. In the early 2000s, I wish my doctor would have taken more time to listen to my concerns when I mentioned that I noticed my breasts were changing and becoming sensitive, and when I described the lump I’ve had for quite some time.

When I was diagnosed with breast cancer in 2012, I knew something should have been done a long time before. I did radiation and chemotherapy, and for five years stayed on aromatase inhibitors to stop my cancer from having a chance to develop. I was cancer-free for a short time and I was doing great.

At the end of 2017, I developed a pesky cough that wouldn’t go away. I went to the doctor in April and had repeated tests until a chest x-ray in July showed a mass in my right bronchia, right underneath where my breast cancer had been. Further testing showed smaller tumors in the right lung, several very small, pin-sized spots in the left lung, and in the bones. A biopsy in August confirmed that it was metastatic breast cancer.

An appointment with my optometrist in October 2018 for a vision issue revealed a tumor in my eye. The testing that followed eventually showed that my cancer had metastasized to my optic nerve, my sensory nerves, my brain stem and the portion of my brain that controls my balance. My cancer had spread with a vengeance.

Once again, my life was all about time.

There were many long drives over the last year to Toledo for radiation and chemo and to Cleveland to see my retinal oncologist. The time spent waiting in doctors’ offices and waiting for test results. I’m now taking a unique medication for metastatic patients that helps keep my cancer in check. While I’m still fatigued, I feel better every day, the tumor in my eye is now gone, my vision has improved a little and I continue to live my life. In short, I am gaining more time.

You might recall the comedian Gilda Radnor. She was one of the 40,000 people a year that are lost to metastatic cancer. Her cancer patient community center, Gilda’s Club, created a program called It’s About Time, The program provides an opportunity for metastatic patients and their caregivers to share their stories, learn more about metastatic disease, and advocate for policies to protect access to care for metastatic cancer patients.

Treatment for metastatic cancer is lifelong – focusing on control of the disease and quality of life. Individuals living with metastatic cancer need support, affordable access to treatment, and unwavering hope that through better funded research this disease can become chronic and not deadly.

If you or a loved one is dealing with advanced stages of cancer, I urge you to visit the It’s About Time website and read the stories, share your experiences, and find out how to contact your elected representative. It is important that we educate lawmakers about the need for funding to be directed to metastatic research, and that public policies broaden access to the treatments people with metastatic cancer need. As policymakers consider proposals to address the cost of health care, we must ensure that patient access is protected, and innovation can grow.

My hope is that by sharing my story, individuals might take the time to ask the questions, schedule the tests, tell their stories and advocate. Because in the long run, it really is all about time.
Joyce Hayden, Port Clinton

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