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What would you do if you were given a life-ending diagnosis? Oxford’s Bill Powell has made his decision, and he’s planning to think about it a lot as he hikes the Appalachian Trial this summer.
By Rose Hoban
If you knew your time was limited, what would you do? For most people, during most of history, the question was theoretical only. But with modern medicine, scans and tests can actually forecast your fate. And for people like Bill Powell, 36-years-old, with an inoperable brain tumor, the question has gone from being theoretical, to being a ponderable reality.
This summer, Powell hopes to find part of his answer on the Appalachian Trail, walking south from Maine to Georgia.
“With the diagnosis, I decided to ‘go south’ a little earlier,” Powell wrote on the fundraising website for a Kickstarter campaign that’s helping finance the trip.
Powell plans to fly to Maine on June 1st, and hike south for up to six months. Under any other circumstances, it would be a complete lark. But Powell has to consider other things like having a seizure on a mountaintop, or titrating his medication doses.
“There’s certain sections, especially early on, where you are climbing straight up and you’re scrambling over rocks and across rivers, what if something happens?” Powell asked. “But if I started living that way now, I would live that way forever. When you have a seizure you can’t drive for six months, so I might as well walk.”
I’ve got a secret
Powell’s wife drove him to our meeting, because he can no longer drive. Seizures in February blew the cover off of Powell’s secret, the one he kept from his wife, and the rest of the world, from the the time he was in an accident on his Vespa.
The accident was pretty serious. Powell broke bones in both legs and dislocated a collarbone. He was wearing a helmet when the accident happened, but the doctors in the emergency room took an MRI of his head, just to be sure.
That’s when they found the tumor on his brain stem, a medullary glioma, grade II.
Powell doesn’t know whether his tumor is ‘benign’ or ‘malignant.’ Its position on the stem of his brain, close to where the spine enters his skull, makes it essentially impossible to biopsy. And it really doesn’t matter. Any tumor growing in the brain will end up being malignant because as it grows, it will eventually make Powell’s cranium too crowded to happily accommodate it, along with his brain.
Powell said the little mass at the base of his brain didn’t change anything for a long time, six years to be exact. Doctors told him it would grow slowly, and probably not be an issue for a long time. So, Powell decided to hold off worrying the people around him, and tried to ignore it.
But he couldn’t entirely oblivious to his big secret. After the initial diagnosis, Powell drove around “in circles” for a day, considering his fate. It occasionally kept him up at night, thinking. It drove him to his computer, where he researched endlessly. And, it kept him wary of headaches.
But, for the most part, the tumor stayed at the back of Powell’s mind. “I had time to work all this out,” he said.
Powell didn’t tell a soul, but the tumor started to weigh on him. Last summer, he started getting persistent headaches he couldn’t shake.
“I was like, okay, I want to do something with my life that makes sense,” he said, so he considered making an altruistic kidney donation. He also had an ulterior motive. When he went to Duke Medical Center to get the tests for the kidney donation, he used it as an excuse to walk over to the neurology clinic, where he had another picture taken of his head without his wife knowing.
“I got my MRI and the tumor had grown which was what was causing the headaches,” Powell said. “So they said, it’s still a wait and see thing, but if there other symptoms that arise we will do steroids and we have some options for you.”
Six months later Powell had his first seizure, and finally, it was time for Powell to tell his family and his wife of ten years.
“The first couple of days that I told her were filled with a variation of tears, and it was very difficult for me to actually come clean and tell her that this is actually what’d been going on,” he said.
I mentioned that if I’d been his wife, he might be dead already.
“Yeah. She was super understanding… she is my rock,” Powell said. After the initial emotions died down, he said her attitude was simple, “She is one of those people who said ‘what we need to do.’”
(Powell asked me not to approach his wife for an interview, saying he wanted to respect her privacy.)[pullquote_left]Follow Powell’s progress at Twitter: @beholderbill
Health/General Blog: www.going-south.org
Hiking Blog: www.thedustycamel.com/bill [/pullquote_left]
The next step was back to Duke, for another MRI. It showed the tumor growing a little more.
“Based on three different MRIs you can see the rate of growth and they know that, okay, what you can expect is that this will continue in this fashion,” Powell said. He got a course of steroids to reduce swelling in his brain, and started on an anti-seizure medication. The medications are keeping symptoms at bay, for now.
The long walk
Powell’s decision to hike the Appalachian Trail caught his doctor off guard.
“His eyes lit up, this kind of thing. ‘A couple weeks?’ No, six months. ‘Six months!’ ” Powell laughed. “And he started going through the things that my mother went through.”
Powell’s doctor was mostly concerned about him having that mountaintop seizure.
“I I said I thought of that too, that’s entirely possible. But if I go for these next few months seizure free and I’m on this megadose of (medication) the entire time, it should be all right,” Powell said. “I did some research and most people are seizure free until they either change their dosages or change things up.”
After discussing it, Powell’s doctor conceded the point, but also asked him to check in when he reaches towns along the way.
“Other than the first ten days, I will hit a town every three days and I’ll carry a tracking beacon,” Powell said.
(Since our interview, Powell says he’s had another seizure, but has adjusted his medications. His plans remain intact.)
And he will have friends joining him for much of the way, who want to take advantage of some one-on-one time with Powell.
“There are so many people along the way who want to walk with me,” he said. “If it’s early on, that’s okay because I’m probably going to be doing 6 to 8 miles a day. But once I hit Pennsylvania, with trail legs and all that… you can do 20 or 30 miles a day, no problem. So these people who hop on with me for a day to have a nice leisurely walk will be pretty surprised.”
Powell has family and friends in Pennsylvania, his home state, and North Carolina, and supporters along the way. “People have come out of the woodwork and said if you need a place to shower, if you need a hot meal, stop here,” he said. “There are even Kickstarter backers who have said ‘stop here.’ It’s a little weird but… I’m down with it.”
Powell will be keeping a blog of his journey and plans to self publish a book when he’s done. He said the only thing that will keep him from completing the Trail would be a catastrophic accident.
“If I fail, I will have attempted to something. And if I fail because I failed mentally, that’s gonna be much harder than if I fail physically,” he said.
And walking the trail from Maine to Georgia is the harder way. Usually hikers start in the early spring, in the low, rolling hills of Georgia and hike northwards. By the time they arrive in the Smokies, they’re in shape. Powell will be starting out by climbing Maine’s 5,000 foot Mt Katahdin, and within a few days, will be walking the Hundred Mile Wilderness, then into the mountains of Vermont and New Hampshire. He’ll finish up in the cool fall, traversing the Smokies in time for the possibility of snow.
“It IS doable, it’s been done by a blind person, it’s been done by an 80-year-old woman, it’s been done barefoot, but it’s a supreme challenge to someone who’s not an avid backpacker,” Powell said. “If I can do it in the hardest way possible, I am bulletproof.”
Powell admits that being ‘bulletproof’ might be more psychological than physical in the long term. Powell’s doctors estimate he has 3-5 good years left. After that, they’re not sure. With the location of the tumor, surgery is possible, but would come with collateral damage to brain tissue adjacent to the tumor, same with radiation. Even if Powell did do the surgery or radiation, he would probably be left with long term loss of motor function.
“The side effects are, in my mind, so detrimental that it’s not something that I really want to even go through,” Powell said, “there’s not a whole lot to do other than wait-and-see.”
And Powell doesn’t want chemotherapy, which would come with big side effects and uncertain results.
“With chemo, I can stick around for the sake of my family and prolong things maybe a year, but maybe 6 months of it I’m absolutely miserable… is that worth it?” Powell asked. “Would they want to see me suffer through this portion? It comes down to the question of, is this the most selfish thing I’ve done in my entire life to not want to extend it out, or the least?”
Powell also said he’s concerned about leaving his wife with hundreds of thousands of dollars of bills after he’s gone. She’s told him that doesn’t matter, but it matters to him.
I asked if money were no object how that would change things.
“Not if it caused undue suffering for everyone involved, me and my family,” Powell responded. “I’ve had people say that you could just get a divorce and live together and you’re not responsible for the bills. But… I don’t want to defraud hospitals. I want to live life and do things the way they should be done. I’m not looking to game the system in that regard.”
Powell said he’s not prepared to sit around and wait for the end. ” I’m going to be kicking through life rather than… rather than not,” Powell said. “I admit, it’s not the right thing for everyone.”