Deb Robertson is a former social worker living with an aggressive case of neuroendocrine carcinoma. She is advocating for the option of medical aid in dying in her home state of Illinois.
Deb Robertson shared her story in September of 2022.
Everyone wants to leave a legacy. I was lucky enough to work with and advocate for homeless youth over the course of 30 years. As an executive director of programming, I had the privilege of creating numerous housing programs for homeless youth, and I’m grateful for that. But I’ve had to step away from my work since I received my cancer diagnosis. Now I’ve had to ask, “What can I do with this time that I have left?”
Since I was in my 20s, I’ve told my family that I don’t want to die shriveling in a bed. I don’t want to have to watch my family and friends see me disintegrate. After I was diagnosed with cancer in January 2022, I took some time off work and I started to think about what I wanted to do with my life, because I knew that my time was limited. I did research on medical aid in dying and I thought, “This is what I want to be advocating for. This is what I’ve felt the need for over the last 40-something years.”
In December of 2021, I was experiencing a little bit of pain in my left side, but it wasn’t anything intense or debilitating. My mother had just been diagnosed with bladder cancer. My wife said to me, “Deb, I want you to go to the doctor to get checked out.” So I went to see the urologist, and they found blood in my urine. Then they had me do a scan. The next day, they called to say they had found multiple masses in my liver.
After some more testing, we learned that I have fast-growing, aggressive, high-grade neuroendocrine carcinoma. I had no idea what kind of cancer that was. My oncologist didn’t know anything about it either. It turns out that low-grade neuroendocrine carcinoma is common, and people can live with it. But with mine, there’s no cure. Every doctor I saw just kept repeating, “Terminal.”
I started treatment right away. I did five cycles of chemotherapy in four months. It was tough: extreme fatigue, constipation, nausea, just overall feeling like shit. I’m a very active person, and I went into chemo healthy except for the tumors in my liver. Initially, I was still walking at the gym and staying active, but by the fourth and fifth cycles, I could no longer go for my daily walks. I opted not to take a sixth treatment because my body was wrecked. I was already receiving blood transfusions, and my white blood cell count was really low. This made life during COVID-19 really difficult. Socially I was isolated, and I don’t handle that well. I’m a social worker — I like to be around people.
Then, this past summer, I ended up having extra time on my hands. I was all set up to participate in a state-of-the-art trial, but when they did the CT scan the day before I was supposed to start, all my tumors were gone except for one. Which was fabulous, but it meant I was not a candidate for the trial. So the doctor said, “Live your summer. Spend time with your family. We’re not going to treat you right now.”
With the time I have now, I want to focus on the things I didn’t have time to focus on before — for instance, there’s this LGBTQ summer camp for kids. I never had time to work with the kids at the camp before, but this year, I was able to do it. There’s also an organization called SAGE that serves LGBTQ elders that I’ve become an advocate for.
Then there’s the fight for the option of medical aid in dying in my home state, Illinois. I’ve advocated for homeless youth rights for so many years. Now, with aid in dying, I’m advocating for something that affects me.
Every Thursday, I get on a Zoom call with a group of people from all over the world who have my type of cancer. We talk about end-of-life decisions, and they’re all very supportive of my advocacy for medical aid in dying. I just went to a funeral last Saturday for one of my friends in my Zoom group. I spoke to her husband. He said, “The last two weeks, she was not herself,” because she was combative, in pain and delusional from her medications. I don’t want to go out that way. I want to go out with my faculties intact as much as I can. I don’t want to be in pain. I want my family to remember the good times.
Thankfully, my family supports me in this. They’re all here in Illinois — my parents, my wife, my kids and grandkids. I still live in the same county where I was born and raised. I’ve thought about moving to Oregon, where medical aid in dying is authorized, but there’s no way I would actually do it. I want to spend my last days with my family. That’s what’s most important.
If I had the option of medical aid in dying here in Illinois, it would mean I could make a decision for myself about when it’s time to go. It would allow me to die peacefully with dignity, and relieve my family of having to make that decision for me. It would allow them to say goodbye, and to know that it’s OK to let go.
We don’t have any control over whether we get a terminal illness, but to have some control over how we leave this earth with a terminal illness is something that everyone deserves. Who wants to suffer?
After my summer off from treatment, I had a scan last week. The news wasn’t good. I have to start chemo again, a different kind of chemo. I don’t know what the side effects will be, and I’m pretty anxious about it. But I’m going to live my life until I can’t. I played two hours of pickleball this morning. Yesterday I walked five miles. My oncologist said, “I can’t believe you’re still doing that.” But it’s my way of saying, “I still got this.” I’m going to do it until I can’t.
Same goes for my advocacy. Because this cancer has progressed so quickly, I want to do as much as I can for this cause while I’m still feeling decent. I want to give as much as I can any way that I can. I know this law is unlikely to be passed in Illinois while I’m here, but it could help someone else. If I can talk to more people about it, help somebody see things a little differently, if I can advocate, that’s what I want to do with the time I have left — however long that may be.
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