As Far North As I Can Go… There’s traveling with CF, and then there’s TRAVELING with CF!
By Cris Dopher
My blog entry of July 13th, 2007:
“A few days ago, I ran in Whitehorse, Yukon, where Robert Service wrote a couple of his favorite poems, including ‘The Shooting of Dangerous Dan McGrew’. Took some pics of the old surviving paddlewheel steamer they’ve preserved there. A short run; but much better than the one up at Muncho Lake. But this morning I ran at the Arctic Circle! It is not nearly as cold or barren as one would suppose. I know it’s high summer, but still…it’s warmer at the circle right now than in many places in lower Canada. I woke up to 70 degrees for my run, which turned out to be a hell of a hill workout. The elevation must be pretty high there. Anyway, it’s an interesting enough place; the Dalton Highway parallels the Alaskan pipeline and that is fascinating to look at – quite an oddity. And the whole tundra area is bizarre, especially now, since there was a 7 million acre wildfire recently and the hills are COVERED in fire-flower – a BRIGHT pink flower. So the whole area is a patchwork of green tundra grasses & trees and this pink wildflower. Great stuff! Haven’t dealt with the famous Alaskan mosquitoes, except at the arctic circle – they are minimal everywhere else, so far.”
Though I’m often pessimistic, my blessings are too numerous to count, truly. Key among them are these three: that I have cystic fibrosis, that I have a career which offers many opportunities to travel, and that I own a motorcycle.
Now, you may be wondering how I can count this disease as a blessing, but I do. I could go on at length about the positive aspects of CF, the benefits it accrues; but that’s for another time and another article. One element, though, is that CF propels me. With a constant sense of how short my time on earth may be, I feel I must make the most of the time I have. (This is nothing new to most CFers, I guess.) What I choose to do with the time I have is to work in a rewarding profession and travel. Lots of travel.
I’ve purposely chosen a career that is the antithesis of the nine-to-five job. I am a freelance designer, with dovetailing professions as a CAD software teacher, draftsman, and writer. While a lot of this work can be done from home, it also involves frequent travel. For instance, I’m writing this on the train back from Blairstown, NJ, where a show featuring my set design is about to open. I’ve been back and forth for the last few weeks, painting the set for three or four days, then going back to New York for a few days. Round and round we go. And I’ve recently confirmed my teaching schedule, which has taken me to Vegas, Chicago, Bermuda, Calgary, Toronto, Vancouver, Seattle, and other interesting locales. Point is: I’m getting pretty good at the five-day jaunt.
I believe the other contributors to this issue will sufficiently cover air travel and long trips by car. We certainly covered these topics in CF Roundtable the last time this topic came up. We can all sympathize with each other about the hardships air travel places on us, especially when we’re hand-carrying our precious medical equipment and refrigerated medications through security, to say nothing of oxygen or in-air emergencies. I suspect we all smirk a little bit when normal, healthy people complain about their bottle of water being confiscated, and secretly dub them a little pathetic. We are CFers and we know how things work and how to push back when we have to. Come to think of it, traveling with CF through airports has made me a much smarter, more prepared passenger than most of the people around me. These days, armed with printouts of what is allowed (from the TSA website and their new blog), I practically skate through security, even with my compressors and thermos of iced medications. Sometimes I’m forced to check my bag, especially if I’m in a Colistin month and am carrying needles – there are some rules not even medical necessity can trump.
So what about my time off? Well, this is where the motorcycle comes in. I love to take long trips and live out of my saddlebags and I am fascinated by the northern regions, especially the idea of going to Prudhoe Bay, on the north coast of Alaska. But how can a guy with CF reasonably make such a trip? A week of travel is no problem; most of us can do that. But going to Prudhoe would take far more than that.
Sometimes, I have to just stop thinking about the problem and do something about it. Last summer I joined six other riders on my longest, most challenging motorcycle ride yet: a total of 40 days of riding that took me all the way to the Arctic Circle in Alaska and the easternmost point of the United States in Maine. And through all of that, I kept up my therapies and maintenance faithfully.
Preparation is the key, of course. How could I keep refrigerated medicine cold on a bike for over a month? How could I even carry that much? I laid out all my medicines and stripped them of their packaging, including trimming off the extra plastic from the Pulmozyme® vials. I looked at the volume of 40 days of TOBI® and Pulmozyme and decided my current quart-size thermos wasn’t going to be enough. Luckily, Stanley sells a 2-quart size thermos on their website I’ve never seen it in stores anywhere. Pack the medicine in that, fill it to the brim with ice, and tuck it away in my T-bag (the bag that sits on the passenger pad and acts as my backrest while riding). The other medications could be squirreled away in various other nooks and crannies, including pockets of my riding suit.
My compressor was a problem. I’d already lost one PARI Ultra® compressor while riding, when a saddlebag just plain fell off somewhere south of Syracuse. After that, I’d started carrying my medical gear only in the T-bag but the regular home compressors are big and require power. I spied a solution in a National Allergy flier: a portable, battery-powered compressor, the PARI Trek-S®. It was expensive, but worth every penny. While one may think of Alaska (and most of Canada) as a remote, barren wilderness with no running water or power; that accounts for only 99.99% of the land mass. The other .01% is along the roads there are hotels, campgrounds, restaurants, everything. Everybody has running water, everybody has power. A few nights in some campgrounds, there were neither, but the battery of the compressor would last me through two treatments, and I always carried a lot of bottled water.
The Vest® was another problem altogether. It boiled down to the fact that I just couldn’t take it on the bike. Not only is it just too big, but the bike would probably vibrate it to pieces and destroy it’s not something I’m willing to risk with something so expensive. With my doctor’s permission and a plan of alternative therapy in hand, I left the Vest at home. I rarely leave my Vest at home. I believe it to be an important part of my therapy and am very compliant in its use. But when traveling by motorcycle, one must make some hard choices sometimes.
A big part of the plan of alternative therapy was exercise. I have been a regular runner since October of 2004. While running hasn’t completely prevented exacerbations, I do believe it has helped lessen their severity, has held them off as long as possible, and has helped me recover faster and more completely. While traveling last summer, my left saddlebag held my running clothes and shoes. It often was great stress relief to my muscles to throw my bags into a hotel room or set up camp, then go for a short run of two or three miles. Once a week, I’d do a five or six mile run, to really help clear out the lungs. In fact, I felt better on the trip than I did most of the rest of the year at home.
A small part of the plan was to accept that I wouldn’t be able to get in every run and every treatment. I’d try my hardest, but travel requires compromise. The reality that I may be compromising my health was not lost on me. But I was feeling good at the time and that was just another reason to go; what if I never felt well enough again to do something like this?
I also took a little time to scope out the CF centers closest to my intended routes. I don’t often do this, but I figure if I got really sick, I’d need to go where they knew how to treat me. I should have also gotten fresh prescriptions from my doctor and taken those with me, in case I lost my medications, but I didn’t. Thankfully, I didn’t have a problem, but that flaw in my planning has stayed with me and won’t happen again.
So, equipped with plans, equipment, knowledge, crossed fingers, and two shiny new tires on my motorcycle, I took off. I’ll keep the travelogue brief. I met the group in Akron, OH, and we crossed Lake Michigan on the SS Badger. We drove across the top of the United States, through some of the flattest, hottest, most boring terrain I’ve ever been through (cows and corn and wheat and pigs). We finally got to the Rockies and headed through Glacier National Park, which is a destination itself. (Go before global warming destroys what’s left of the glaciers!) From there, we headed north, crossed into Canada, and joined up with Canada 2, which is the only land route into Alaska. We camped a lot on the way up, and eventually crossed into Alaska and got ourselves to Fairbanks.
Fairbanks is the northernmost major city in the US, but not the northernmost settlement. Most of our party was happy to have made Fairbanks and that’s where their northbound journey ended. One of the crew came with me and we went farther all the way up along the Haul Road to the Arctic Circle. It’s about a day of driving from Fairbanks to get there and there isn’t much there, just some unimproved campsites and a marker declaring the latitude: 66° 33 north. That is the line where, on June 21, the sun never sets, and on December 21, the sun never rises. To some of us in the contiguous 48 states, this is a magical demarcation, separating the real from the unreal, the normal cycle of night and day from a supernatural suspension of time. And though I was three weeks too late for a full 24 hours of sunshine, it never did get dark up there. I was awakened at 1 a.m. by the sun shining through the trees, through the window of my tent, and into my eyes.
I got home. I had less than a day of turnaround time before the second half of the trip that took me to Eastport, ME. Laundry got done, of course, but so did a thorough examination of my remaining medications. I supplemented or replaced as necessary, packed up, and was off again. By this point, traveling on my bike, taking care of myself through twice-daily breathing treatments and every-other-day runs, was easy. My new travel partners were amazed, though, and looking back on it, I also am amazed at how disciplined I became – because I had to be.
I have to go back someday. I didn’t get as far north as I wanted, didn’t tempt fate enough, some would say. I know now, though, that what limited me then and might limit me in the future isn’t my CF – it’s time. I just ran out of time. The CF is manageable, with the right planning and equipment. The treatments are a known factor – there is no guesswork about those. Traveling with CF is always a question mark, but only because the rest of the equation is full of uncontrollable variables. But taking care of myself on the road? Done deal.
Cris Dopher is a lighting and scenic designer living and working in New York City.
