By now I don’t think anyone hasn’t heard of Brittany Maynard, the twenty-nine-year-old woman who will most likely be ending her life on November 1, 2014, with a legal prescription drug, before cancer takes her. Brittany’s case has special meaning for me, because almost a year ago to the day, my husband, author Robert E. Bailey, passed away from that same cancer.
Glioblastoma is fortunately rare; about 22,000 people are diagnosed with this each year. But the tumor is a terror. On Glioblastoma Support Group, our Facebook support group of about 3000 people, maybe 1/3 of the patients have a tumor so aggressive or in such a bad location that they survive less than a year. The rest of us, with very few exceptions, have lost our loved ones within two years. We’ve had debates over there since Brittany’s original video was posted, the same as everywhere else on the net, but a lot of the rancor and religious pronouncements and posturing is missing. In our community, where all of us have this tumor or are caring for someone who does, we all understand.
The more I read from outraged Christians or from people nowhere near this stage of their illness, the more I want to post a few words to urge those standing in judgement to have a bit more empathy for the situation Brittany is really in (and could you please try to understand what that is first? Thank you), or, at the very least: Butt Out.
This isn’t you. The circumstances, the personal and family situation, of each and every death are specific to that being, be it person or animal. So is the life that being has had up to that point.
First, let’s try for an accurate understanding of where Brittany is. I see so many ignorant comments such as, “There’s chemo!” “There’s radiation!” “There’s cannabis oil!” “She isn’t even trying to live!”
Please understand that Brittany is in end stage disease. If you would read or listen carefully before rushing to make pronouncements about sin, God, and redemptive suffering, or suggest things that have already been tried or ruled out for very good reasons, I wouldn’t be seeing posts like these. Brittany Maynard’s tumor is HUGE. It takes up one quarter of the space inside her skull. As we in the support group know only too well, when the tumor is that size and growing, the writing is on the wall.
There are only two drugs that really do much to combat this at all, along with a smattering of others that are sometimes used as fallbacks; when those don’t work anymore, or the tumor is progressing at an alarming rate, I hate to say it, but it’s all over. That’s exactly where we were this time last year. Of course I was asking our neuro oncologist (affectionately known in our support group as The Wonderful Dr. Khan), “Isn’t there anything else?”
Of course Brittany has asked the same thing. Repeatedly. In a word, DUH.
She is not choosing to die rather than pursue an available treatment that makes sense. This cancer is a monster. To illustrate: in May of 2013, my husband Bob’s scan showed no visible tumor. In early July, he had two tumors that together would be about the size of Brittany’s one, plus a possible third. That big in two months. Those tumors flatten and destroy any normal brain tissue in their way, and there’s no getting it back again.
We didn’t live in a Death With Dignity state. Of course I had to ask myself when this story came out: If Virginia had a DWD law, would we have chosen to pursue that? I am a veterinarian and no stranger to euthanasia. We’re the only profession where you see and practice euthanasia every day.
In our unique circumstances, we would not have ended up taking this route. I say this for two reasons: One, Bob just wasn’t that kind of guy. He was a war vet, had worked in a dangerous profession for twenty-five years, and worked as an armored car driver for several years more after that, during a spate of widely publicized armored car robberies. I’d catch him on the computer after work, looking up the latest one.
He actually believed he’d die getting shot at, not from something as run-of-the-mill as cancer. One of his favorite sayings was, “Every day above ground is a good one,” and no matter how his speech didn’t make sense, or how often I had to feed him because his right hand didn’t work so well anymore, or how often I had to push him in his office chair to the bathroom or, later on, change his diaper, his demeanor tended toward that same attitude. He never got despondent or weepy toward the end. The most obvious unhappy emotional state I could identify during those insane last weeks a year ago was more a childlike bewilderment. (“Why can’t I get up?” “Because I don’t think I can pick you up by myself.” “Oh.”)
But I have to say that this was a peculiarity of Bob’s. Our society admires people who are always accepting of defeats and problems and handle them with this kind of cheerful and optimistic attitude; in fact, it demands this of us. If we can’t be this kind of person, we are looked down upon and scorned by others. (Being of the opposite temperament, I know this only too well.)
But I have read that a person’s emotional baseline is partially determined by genetics, and after experiencing Bob with GBM, I don’t doubt it. The last weeks of the dying process couldn’t make much of a dent in his general optimism; but, two years earlier during treatment, the steroid dexamethasone certainly could.
Bob was diabetic and tried like heck to stay off of steroids; they sent his blood glucose skyrocketing and made him insulin-dependent for as long as he took them. But after a prolonged period of brain swelling from the radiation treatments, The Wonderful Dr. Khan had no choice but to put him back on them, or the disabilities that came with Bob’s tumor location–problems speaking, an inability to read and write, and right-sided weakness–might have become permanent. When this formerly cheerful soul who had accepted a five-hour brain surgery and everything else up to this point with jokes and laughter started crying every morning when I had to leave for work, crying when I put up Christmas decorations, crying when he dropped his favorite bowl and it broke, I began to see exactly how little of our emotions and our reactions to things are under our conscious control, and how much of all that is just, brain. Brain chemistry. How much emotional suffering is a person experiencing through any given trial or tribulation? It really does vary from person to person, and genetics really does determine some of that. Ask anyone who researches Borderline Personality Disorder. They can tell you some more about this. It’s real.
So, to say, “I am going through this or something similar and I am not enduring such emotional suffering at the prospect of what will happen to me that I need to check out early, therefore neither are you and thus you are a coward/sinner/deserve to be punished by God,” is absolutely wrong. Not, not, not at all correct. Sorry, but that’s a fact.
I did say I had two reasons we would not have pursued assisted suicide under a DWD law. The second reason is that, for GBM, we had an easy ride.
Having spent almost three years on Glioblastoma Support Group, and having been there since the very beginning, I have read every story from the very, very good, to the very, very bad. We were lucky. Bob breezed through chemo, with nary a metallic taste, not a loss of appetite, no strokes, no persistent headaches, and only two seizures (and partial ones at that).
His disabilities, while distressing to him at the time–try being halfway through your fourth novel and suddenly being unable to read or write at all, and having terrible trouble speaking–resolved enough within two months to allow him to finish his last novel. He was never bedbound until the very, very end. He walked, he drove, he cooked for himself, he did laundry and dishes, he took out the trash. We went to the beach, to theme parks, he did book signings, he spoke at the first Richmond, Virginia brain tumor walk. He would apologize constantly for being sick. I’d tell him, “Sweetie, it’s no biggie. This is an easy ride,” and, having read absolute horror stories from patients much, much worse off, I knew it was the truth.
As a veterinarian, I have witnessed some horrible, horrible deaths. So when I read the accounts from those not so fortunate as we were, my understanding of what that family and that patient were going through was something alive and visceral. There is absolutely no way I would demand that any being, animal or human, die in such suffering, for any reason, religious or otherwise.
If I had seen Bob in that kind of pain at the end, and an option for ending it was available, would I have taken it? I guess it depends…on exactly how much pain, vs. how much I knew his first inclination would be to stick it out. And would I be looking for that one sign from him that made me absolutely sure, and not make that decision if I didn’t see that sign? You bet. Death is not a decision anyone makes lightly, and to accuse anyone of so doing is callous and, well, stupid. In the extreme.
But we never got there. Bob was in some pain at the end, that I know. One of the last things he wanted to do was for us to finally attend a writer’s conference together, which we had wanted to do the entire ten years we were a couple and circumstances simply had never allowed. On his birthday, September 13 of last year, we finally got to one. Instead of having his pain in his head, Bob experienced it down his right side. For the longest time, we thought he had strained his shoulder. It kept him from sleeping well, and one thing brain tumor patients need a lot of is sleep. He wasn’t at his best during the conference because of it (and he had to speak, oh dear.) And at the end of his life, when he had lost the ability to speak, we noticed him grimacing when we turned him onto his right side. But it was never so horrorific as some stories I read, where brain tumor patients died crying in pain for hours and hours, because they were allergic to the morphine drops and those could not be given. Again, we were lucky.
There are those who write, “But what meaningful experiences could you miss, ending your life prematurely like this?” And those questions have merit. During the very last weeks of his life, at exactly this time last year, Bob was mostly bedbound, able to sit up and get around only with extreme difficulty and the help of a strong back or two. He could understand speech, but his own was marred by what I can only call “brain static.” It was like trying to tune in a radio station too far away. Sometimes the conditions would be right, and three or four or many sentences would come out completely coherently. We had one marvelous conversation during this time that I will treasure for the rest of my days. Then, suddenly, a few minutes or a few hours later–BZZZ! A few sentences or a few words would sound normal, and then the gibberish would start.
Poor Bob. You could tell he understood what you said, and he was trying to reply intelligently, but the wires from the brain to the mouth were throwing sparks and smoke. Brain static.
Despite all this, when the news came through, in the last two weeks of his life, that two small publishers wanted the book it had been his goal to live long enough to finish, and that his agent wanted to shop it around to larger publishers, Bob was able to understand, and he was glad. We shared that last sip of champagne. He had longed all his life to be a writer, had to put it off until his late 40’s. It was a bittersweet triumph.
But he got to spend that last bit of time happy and excited. He tried to give me advice about dealing with his agent, about any book deal he might come up with. (I could only understand the first two sentences of it, but he knew and he was thrilled to talk about it.) For Bob, this was the culmination of lifelong dreams. Am I glad he stuck around for it? Yup.
But I don’t think that Brittany Maynard is talking about ending her life at this stage. If she reads this, she can correct me if I’m wrong, but I’m thinking she’s guessing, with medical guidance, when she might enter that period when disability is so great, when pain is so total, that moments like these are no longer possible. And we got to that place, too, make no mistake.
I’m quite sure that if November 1st rolls around, and Brittany feels better than she had assumed, and she does not want to go yet, she won’t. And that is as it should be. To think that any terminally ill patient would not approach the decision, that irreversible decision about the day they will die, any other way, makes little sense to me. These people asserting that Brittany will now choose “suicide” on the first because the public’s eye is now on her and she feels like she has to go through with it now, seem to have even less sense, and I don’t care who I offend in saying so.
So please. Let Brittany be Brittany. Let her life be hers and her circumstances be hers, and her decision be hers. Butt the you-know-what-out. And if you’re ever terminally ill, we’ll all do the same thing for you.