Nancy Uden

Nancy Uden is living with an incurable and aggressive type of brain cancer. As a longtime advocate for medical aid in dying, she is now championing the option in her home state of Minnesota as end-of-life healthcare autonomy has become profoundly personal.
Nancy Uden with her husband and their dog

“Years before my diagnosis, I told my family that I don’t want to die an ugly death. I don’t want it for me, and I don’t want it for them. No one wants that for their loved ones.”

Nancy Uden shared her story in October of 2023.

I had a car accident on November 30, 2022, caused by a seizure that was later attributed to a benign brain tumor. A second opinion diagnosis from Mayo Clinic in January 2023 was a glioblastoma multiforme — brain cancer.

I sought out a second opinion, not that I doubted the diagnosis from the first neurologist, but because I wanted the tumor removed and the neurosurgeon I was referred to refused to remove it based on the location of the tumor. He preferred a wait-and-see approach, and that just wasn’t a good answer for me. I didn’t care if the tumor was benign or malignant, I wanted it out. I referred myself to Mayo, and a resection and biopsy on January 26, 2023, confirmed a glioblastoma diagnosis.

If I had agreed to the wait-and-see approach I would be dead by now. The tumor grew 50% in the one month between the December and January MRIs. After my surgery, I’ve continued to do my part with chemo and other treatments. I want to be here with my loved ones. My family and friends are my purpose in life. Second to that is my only volunteer work — my advocacy to pass a medical aid-in-dying bill here in Minnesota. My most fervent wish for myself is to die peacefully when that time comes.

As expected, life has been different. Prior to my diagnosis, I was doing quite a bit of volunteer work, and shortly after my diagnosis my husband said to me: “I love your volunteer spirit, but I know how much energy it takes out of you and that you have a finite amount of energy. And I see how much energy you get when you’re with family and friends.” So that’s how I’m trying to spend my remaining time. I see friends for lunch, and I try to see my children and grandkids at least once a week. I’ve been on several trips this year to connect and make memories with family and friends.  

I try to live life like I’m living with cancer, not dying from cancer, but it’s always in the back of my mind. I am realistic about my disease and the overall survival rate. As an incurable cancer, it recurs, and the success with recurrence is not very good. They can go through all the things they’ve already done, but the statistics are not good. The median recurrence is nine to 10 months, and I’m there right now. 

Years before my diagnosis, I told my family that I don’t want to die an ugly death. I don’t want it for me, and I don’t want it for them. No one wants that for their loved ones. I talked to my oncologist about it, and he said some people slip into a coma and pass away and, because your brain is your command center, others’ last days are accompanied by terrible headaches, dementia and seizures. That’s the part I’m trying to plan for. I don’t want my family’s last memory of me to be a prolonged, horrible death where I’m robbed of my joy and who I am. 

My oldest granddaughter is expecting a baby, and she gets to choose whether to give birth in a hospital or birthing center, whether or not to have an epidural, all the details of how the birth of her child is going to look. I want that same degree of autonomy in planning my end of life. We all deserve autonomy. To me, medical aid in dying is on that same continuum of choices we get to make about our lives and healthcare. This is the last big decision we can make. I didn’t decide I was going to get this disease, but now that I have it, there are decisions I want to be able to make, decisions I deserve the authority to make.

 

Read More:

Minnesota Women’s Press – COMMENTARY: Additional Work to Be Done in Bodily Autonomy

The Lawton Constitution – A tumor in her brain, she wants the option to die peacefully

Star Tribune –  A tumor in her brain is ticking like a time-bomb. Nancy Uden wants the option to die peacefully

Minnesota Women’s Press – Deep Dive: Public Testimony About Dying With Dignity Legislation

Fox 9 (Minnesota) – Minnesota family advocates for end-of-life options: ‘A family affair, like a wedding or a birth’

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VICTORY: Colorado Gov. Jared Polis signed the improved End-of-Life Options Act.

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