Jeff shared his story in July of 2021.
My partner of 45 years Joanne ‘Rocky’ Kunz was given an advanced stage 4 cancer diagnosis at the beginning of 2021. After chemo and immunotherapy failed, and her pain became increasingly intense, we stopped treatment. Her oncologist and hospice team knew she was in her last days of life and that she would decline and suffer significantly before her death. I am angry that Illinois forced my wife to suffer needlessly and pointlessly. I’m only willing to revisit the worst days of my life to articulate clearly the need for medical aid in dying.
Rocky and I met in 1976 while I was in college and she was living with a group of artists at a nearby farm. A mutual friend set us up, telling me that Rocky was interested in me and that I should ask her out, then telling Rocky I was interested in her and planning on asking her out. I was only 21, and she was 28. She thought I was too young, but I was persistent. I knew she was somebody who would make a tremendous partner and make me a better person.
Rocky was one of a kind. Given her nickname endearingly by a housemate, she kept it because she wanted a non-gender specific name as an artist. She was highly talented–cartooning women's comics and creating linoleum block prints.
She was funny, outgoing, bright, emotionally intelligent, quick witted, a feminist and a willful and determined woman. She balked at anyone who tried to tell her what to do. She was a force to reckon with and became our son Ted’s biggest advocate. He was born with cerebral palsy and Rocky fought the school system for his rights and interests to keep him connected and part of the community. Though a trailblazer for Ted and other children living with disabilities in our community, she never wanted any credit for the things she did on his behalf. She believed any loving parent would advocate just as strongly for their children.
In September of 2020, Rocky went to the doctor regarding discomfort in her back. An X-ray showed a lot of arthritis, and the doctor prescribed physical therapy and ibuprofen. Two months later, Rocky said, “I just don’t feel right. I can feel something on my left side. This is something else.” She went back to the doctor, and in December, CT scans showed that she had cancer in her left kidney and lungs, and it looked like it had already spread further. The first week of January 2021, she was officially diagnosed with stage 4 kidney cancer.
As longtime supporters of Compassion & Choices, we had had conversations over the years about what we did and didn’t want in our last days. We both felt medical aid in dying was an important option and had even discussed moving to a state with this option, but we have a son with disabilities and his home and network are here so we stayed. We faced the reality of being without an option at a time of need.
My wife endured nearly five months of chemotherapy, then immunotherapy, but neither were effective. Suffering from severe pain in her left flank that kept her up one terrible night, moaning in agony and struggling to breathe, we went to the ER the following day. There, they discovered her sodium level was dangerously low. Rocky was admitted to the hospital, spent 12 days there, and learned through another CT scan that the immunotherapy was not working.
We decided it was time to end all treatments. When she shared her decision with her doctor, Rocky told him, “If I had a safe way to end my suffering, I would do it right now.” Rocky wanted and needed the option of medical aid in dying. She was unwilling to illegally end her life, even though she had access to medications that would likely bring about a peaceful ending. She feared doing it incorrectly, damaging herself further, and creating a legal problem for me or anyone else who might help her.
Rocky’s pain and discomfort continued. Sometimes she would just stay in the same position for nearly an hour, moaning softly in pain, angst and sadness. She wouldn’t move because it was bad lying still, but moving made it worse. It was heartbreaking to see and hear her trying to work through her pain, even while on morphine.
She enrolled in hospice, and almost immediately developed dementia-like symptoms from an apparent tumor in her brain. Separately, two hospice nurses and Rocky’s oncologist advised me that “she will get worse.”
And it did get worse. Her brain tumor stole her short term memory, her ability to speak and eventually to walk, but not to comprehend. She was aware and it was beyond horrible. She continued to decline for several days until she was more heavily sedated. Rocky finally died peacefully on June 25th, but only after the traumatizing suffering she and I both endured.
If the professionals knew that things would get worse, why couldn’t something have been done? What was the point of extending Rocky’s life? The professionals were telling me: It’s bad now, but just you wait. It’s going to get worse. There was no need for Rocky to suffer, regardless of her own personal beliefs. There’s no need for anyone to suffer like that. I beg lawmakers to give people the option. Whether they choose it or not is up to the individual, but please create the option for people who need it and want it.
I have the memory of Rocky in this bewildered, forlorn, frightened state. I don’t want that in my head. It’s not the last image I want of my wife. The experience of dying is somewhat abstract until you’re there trying to help someone you love who is going through this. You can’t imagine what it’s really going to be like. I certainly couldn’t. For those opposed to medical aid in dying, the option should still be provided. There may be a time when you change your mind. Dying can be much worse, much more painful and torturous than you may have ever imagined.
Our experience was horrid. I can’t think of a single person I would wish this on. It was such a hideous process to go through with my wife. Knowing she was ready to die, and there was no way I could help her, I’m left feeling like I failed her. It was such a tragic ending for such a beautiful person. My wife deserved to make her own decision.
