Rebecca Van Wormer (1974-2017): “I want the option to go on my terms”

A resident of East Millinocket, Maine, Rebecca VanWormer told us her story in August 2015. She died in January 2017 .


I’m 43 years old and I’m dying of cancer. My goal is to live as long as I can but when I get to the point where I can’t take care of myself, I want the option to go on my terms.

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.

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.

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.

Rebecca Van Wormer - Kilkenny Castle
Rebecca fulfilling items on her bucket list, Ireland.

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.

I don’t know which cancer will kill me and when, or what I will go through before I die. 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. That’s the hardest part.

Being able to plan and have a say in the matter would take that scary part out of it. It’s about having the option—and I’m all about having options.

Rebecca Van Wormer with Husband Ken - Niagara Falls
Rebecca and husband, Ken, at Niagara Falls.

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.

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.”

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. 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.

Rebecca Van Wormer - Portland Headlight
Rebecca at Portland Headlight with the family dogs.