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Rebecca VanWormer: I Want to Have a Say

Update: Rebecca died on January 5, 2017. Read more →

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Rebecca VanWormer is an insurance agent in East Millinocket, Maine.

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I’m 42 years old and I’m dying of brain cancer.

The day before my 39th birthday, in 2012, I found a lump in my breast. Tests confirmed a diagnosis of cancer. I did surgery, radiation, chemo and 13 monthly rounds of treatments. Doctors said they got all of the tumor; I thought I was safe.

Death with Dignity advocate Rebecca VanWormer

Rebecca VanWormer singing with one of her bands

In October 2013, I moved from upstate New York, back home to Maine to help my mom, a 30+ year breast cancer survivor, care for my ailing father and a large house.

Death with Dignity advocate Rebecca VanWormer at Cape_Elizabeth, Maine

Rebecca VanWormer with her husband Ken at Cape Elizabeth, Maine

Singing in church choir I noticed I couldn’t hold notes as long as I used to be able to; I’d take my dogs for a walk and an incline in the road which used to be no problem was now a challenge. In October 2014, I was diagnosed with liver cancer. I have two large tumors the size of grapefruit and lots of smaller ones. This meant more chemotherapy and that maintenance treatments would now be once every three weeks for the rest of my life instead of for just a year.

Death with Dignity advocate Rebecca VanWormer at Cape_Elizabeth, Maine

Death with Dignity advocate Rebecca VanWormer with her dogs Buster and Kal-El at Cape Elizabeth, Maine

I finished chemotherapy in April 2015. On May 24, I experienced what seemed like a stroke: a spot appeared in my vision as if I’d looked at the sun, my right hand and lips went numb, and I couldn’t think of how to say words to communicate with my husband. I went to the emergency room where they told me my cancer is now in my brain. I have two tumors the size of quarters and lots of little tiny ones.

Death with Dignity advocate Rebecca VanWormer with her husband Ken

Rebecca VanWormer with her husband Ken at their wedding reception

This cancer is going to kill me, I just don’t know when or what I will go through before it does. Will I go blind? Will I lose all motor control? Will I lose the ability to speak? Will there be a lot of pain? I expect most, if not all, of this will happen.

Before my father died in August, 2015, I saw what he went through in hospice and what my mother went through as his caregiver. I don’t want that for me and my husband. I don’t want to be in pain for several months or to have someone else clean up after me if I am unable to get to the bathroom and soil myself. I don’t want the final memories my husband has of me to be this blind, deaf, mute, body of flesh who can’t even feed herself. I don’t know if I will end up like that, but with this cancer being in my brain, it is a possibility.

Death with Dignity advocate Rebecca VanWormer with her husband Ken at Niagara Falls

Rebecca with her husband Ken at Niagara Falls

I wasn’t expecting middle age to be 21 for me, but I’ve done most of the things I’ve wanted to do in my life. I started a bucket list when I was 25. After my husband and I traveled to Ireland in September, there is only one thing left: to travel Route 66. I have a fascination with the past which I didn’t have in high school. I learned about the Dust Bowl during the 1930s and most people who moved used Route 66 to get to California. It’s a historic road and it’s disappearing bit by bit as well as many mom and pop businesses sacrificed in the name of “progress.”

Death with Dignity advocate Rebecca VanWormer at Kilkenny Castle, Ireland

Rebecca VanWormer at Kilkenny Castle, Ireland in September 2015

I know I’m dying. I accept that because there is no getting out of it. I’m hoping I have three years; but no one, including the doctors, can predict anything. I want to have a say in the matter. I want the option to go on my terms. That is why I am advocating for a Death with Dignity law in Maine. I will either die with the law in place, or fighting for it.

(August 2015)

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