We need more heart than this

By Rebecca K., Burnsville, Minnesota

Fifteen years ago, I had stage III breast cancer. And it was a form of cancer with a marker that did not readily respond to chemotherapy or radiation. Usually people with that marker don’t survive long.

I discovered I had breast cancer through a mammogram. And after discussing my options with an oncologist, I decided to have a mastectomy, two rounds of chemotherapy, and 17 lymph nodes removed (nine of which were positive for cancer).

During that time, researchers were starting a clinical trial on a new drug that was a biological agent instead of chemotherapy. I was lucky enough to receive the experimental medicine, and then radiation. Now, the medicine is very common; doctors give it to almost everyone.

This is what saved my life. Just this year when I went to my oncologist, he said I wouldn’t be sitting there if I hadn’t had the treatment. For me, it was a miracle. Now I have chronic, but stable breast cancer.

Two years after my cancer treatment, I burned my left arm severely. Since that time, I have had lymphedema — a type of swelling — with multiple recurrent treatments. My arm is still swollen as they had to remove 13 lymph nodes. As a result, I wear compression garments all day, every day. During the day, the compression garment consists of a sleeve and glove, and at night, I require a bulky, quilted combination sleeve, both of which are very expensive.

After the injury, I received a letter stating that my insurance would no longer cover the cost of the compression garments. I was forced to switch to a cheaper, less effective compression garment, that made the lymphedema worse and caused nerve damage to my hands and feet called peripheral neuropathy. This happens during chemotherapy as good cells are also killed, along with bad cells.

Today, I am unable to fasten buttons, zippers, or do needlework, which I used to enjoy. I have also been forced to give up other activities where two hands are necessary. These activities are now impossible. It feels like I am walking on a bed of nails and my hand pain keeps me up at night.

Before Obamacare, I thought I had pretty good insurance, and worked in a health facility as a psychiatric nurse, but the insurance was only good for certain treatments or therapies. If you have a chronic condition that goes on and on forever like I do, it was nearly impossible to pay for insurance. Obamacare changed all that and has finally helped me afford lifesaving cancer treatments and the right compression garments that continue to aid me, post-injury.

Obamacare is truly a lifesaver. It was a lifesaver for me and it is a lifesaver for millions more people. It’s not perfect, but I do not understand why they are trying to strip it away. It’s scary to think where I would be without it. It’s scary to think where the country will be without it.

I pursued a career as a psychiatric nurse because I care about people. And I am sharing my story because I refuse to stay silent while millions of Americans are in jeopardy of losing the health coverage they rely on. We need more heart than this. Americans deserves better.


Originally published at www.ofa.us.

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