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A letter to Brittany Maynard: There’s more than the right to die

Joe Neyer, who has the same aggressive cancer, had a message for Maynard in the days before she ended her life

October 30, 2014 12:45PM ET

by Sameen Amin @sameenamin

Editors note 10/30/14: Brittany Maynard released a new video yesterday, explaining that she may not decide to undergo assisted suicide on Nov. 1. "If November 2nd comes along and I've passed, I hope my family is still proud of me and the choices I made," she says. "And if November 2nd comes along and I'm still alive, I know that we'll just still be moving forward as a family out of love for each other and that that decision will come later." Watch her full video here.

Brittany Maynard is planning to end her life Saturday. And in her last few scheduled days on earth, Joe Neyer wanted to send her a message.

America Tonight first met Neyer back in October. A year before, he'd been diagnosed with Stage IV glioblastoma multiforme, the same condition as Maynard. He rejected normal treatment protocols, but two years on, he's beat the odds.

Neyer said he admires how Maynard has opened up a national conversation about "dying with dignity." But he wants Maynard, and anyone else with a terminal diagnosis, to know that there's another option, too. This interview has been edited for brevity and clarity. His full letter to Maynard is posted at the end.

What did the doctors tell you when they gave you your diagnosis?

They gave me the baseline: that 60 percent of people are gone in the first year [and] that the average is 14 months on full treatment. I did surgery, I did radiation, I did chemo – two rounds – and I lost my ability to function on the second round. I couldn't get out of bed or off the couch for a long time. And with glio, it's chemo for life, basically. Five days on, 13 days off, five days on, 13 days off is the protocol until you die. That's not really how I want to finish, so I stopped. I had the paperwork in front of me many times to sign these different trials. I was being pressured by everybody to do this trial – my brothers, my family, everybody – tons of pressure. I couldn't sign the form.

Why did you want to write Brittany a letter?

I felt connected to her process, her condition, to the struggle she's going through and I really was deeply moved by reading her article. She's still alive, so I wanted to reach out to her in any way to show her that there's more than just the right to die. She's made a choice and I really honor that choice and respect that choice. And yet there's more we can talk about, about how to live well while you're here.

Joe Neyer in his Oxford, Ohio home.

America Tonight

Why did you decide to reject full treatment and "live with quality," as you put it?

The way the system funnels you in a certain way is toward fear, toward, 'You have this limited window of time, make the best, go on vacation,' all these things, right? And those are fine, but that was not my interest. My interest was, 'Wait, I'm not dead yet.' I'm interested in seeing how far I can push this.

What's your average day?

I typically wake up slowly and ease into my day as much as possible, some stretching, some sitting. My diet's somewhat structured and the medications I take – all these things are part of each day. Writing's a big part of my day. At this point in my life, I don’t have a job to go to, I don't have the standard normal things that would keep me in those kinds of routines. So my routines are about being attentive to this day and what I need to do to stay alive.

What medications are you on?

Anti-seizure. I'm on four milligrams of steroids, which I split into two and take half in the morning and then half shortly [after] because they keep you up late and kind of wind you up. And then I have a lot of different supplements, and I also have a fentanyl pain patch.

Joe Neyer rubbing ointment onto his ankle to help with the swelling. Routines like this, meditation and supplements are some of the adjustments he makes each day to his life.

America Tonight

What about the fear of suffering? Do you still suffer now?

I have a headache right now, yeah. My legs are weaker. I've had two years of not being as physically active. They're getting stronger, but it takes daily work for sure to get my legs back under me. Pain, sure, I have to adjust that every day. But fear acts to close our mind in a certain way. I'm looking at this chart over and over again and it tells me I'm going to die soon. It's overwhelming. And if you stay locked into that mode, it's very difficult to be open to other possibilities.

What's something you would say to Brittany if she were in front of you right now?

My gosh, I'd say, 'Brittany, you know we're all in this together. And it is a scary thing to be given a terminal diagnosis. It sure is. But there's more to be investigated. There's more to be learned. There's more to be discovered.'

It's incurable – that's what they say. But I don't necessarily believe that's the fact. In fact, we know it's not. Some people do make it through glioblastoma.

I could die tomorrow, very easily. That's part of the fact of glioblastoma. It's the most dangerous brain cancer there is. But I can't live well today if I'm worried about dying tomorrow. And no matter what the chart's saying, no matter what the people say, you're still alive today.

What are some experiences you've had the last two years that you may not have had if you'd handled your condition differently?

Last year, we were in California and I looked over at the Golden Gate Bridge thinking, "Well this is probably the last time I'll ever seen the Golden Gate Bridge, right?" And it kind of cracked me up. It just made me laugh, frankly. I had to let go of the image of the Golden Gate Bridge and be like, well, who knows? I may see it again. I may not. It's not that important to me. I've had a lot of great times for the last two years. I've had wonderful connections with many people and they just seem to keep growing. I wouldn't change a thing. I wouldn't change having glio frankly. It's what I have. It's part of my life.

Joe Neyer's open letter to Brittany Maynard:

Dying with dignity includes living with quality.

Hello. My name is Joe Neyer. I was diagnosed with glioblastoma multiforme (GBM) in November 2012. I had to face a terminal diagnosis, so I can relate to what Brittany Maynard is facing. I was given 14 months to live. I had surgery and chemo, but the tumor returned, which made my prognosis even worse. Months at best, they said and more likely weeks. That was over a year ago now.

I was given options, but they all involved living as a glio patient on chemotherapy or other hospital trials and that was not really how I wanted to finish out my life experience.

I decided to include medical treatment with other alternatives.

I looked into what other ways I could approach the "baby" growing in my brain.

I realized that my right to die included my right to live, that I could accept my condition and still accept being alive and living as well as I could. And in that acceptance alone I began to see positive effects in my condition.

I noticed others were also looking into these same things, asking similar questions, and discovered more and more. It is not without ups and downs, but opening to the actuality of the condition does help shed understanding on the fear that can arise when given a terminal diagnosis. Now I am looking to understand it, not run from it, so I pour my heart into that, understanding as much as I can. Understanding unfolds like a lily on a pond, naturally opening up and revealing what seems hidden in the depths.

I am now almost two years out from that diagnosis and defying all expectations.

I am not bed-ridden, not incoherent -- actually seeing improvements in all areas of function.

It is not a miracle cure.

I am still a human dealing with glioblastoma.

I take some meds: anti-seizure, low dose steroids and pain meds, adjusting these as needed as time moves along. Also, I include all sorts of other practices that have been a part of my life for decades now.

So, it seems to me there are many ways to approach a terminal diagnosis.

Sometimes we are limited by our own assumptions or by what the doctors and charts tell us ‘will be.’

Medicine should not be ignored or neglected of course, but there are often other things we can include that will make a big difference, not only in quality of life, but in the extension of life as well. As a human with glioblastoma multiforme who is defying the odds and the expectations, I think it is important to share this aspect as well when we are talking about the right to die with dignity.

It was great to see this conversation brought into the open by Brittany and there is much more to explore, it seems. Those with glio who watched her story were given death with dignity as an option. That is one story to be told here.

I would like to add to it about living with quality while facing a terminal condition. It seems to me those same people afflicted with GBM who saw her story may benefit to know there are other options that they do not know. Not only on how to live, but potentially how to live well -- if we are open to possibility

The right to die with dignity involves the right to live with quality. We are beginning to find out just how much we can do in this regard when it concerns a terminal diagnosis such as GBM.

Thanks for your time.