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Managing lymphedema on the ride

The question I get asked by others with lymphedema and by my family is usually, "How was the leg during all those miles?" To my friend Alexa, a student of literature in Vermont who has a wonderful and very honest, frank blog site about young people dealing with lymphedema Alexa's blog. And to my friends at the South Metro Lymphedema Support Group near Denver, and my therapist Jessica in Denver (who also rides bikes in summer and telemarks in the winter) and others with an interest, I'll say it was very manageable. The rash was the big deal on this trip, not the legs.

Note the "real" rain
jacket this time!

As noted earlier on this site, exercise and especially lengthy exercise like this generates more waste fluid from the cells which ends up being retained by those of us with lymphedema. And more swelling results. 

I brought all my "supplies" to help reduce any swelling by wrapping the leg if necessary. These are the foam and single-stretch bandages that the lymphedema community is so familiar with. I was prepared to take an extra day and do some wrapping if the leg wasn't doing well.

I was also planning to do some manual lymph drainage massage to help the fluid flow out of the legs and into the functioning lymphatic system. We do that pretty regularly (if we're being good about our self-treatments) whether we are exercising or not.

So how did it go? Very well, in fact. Yes, there was some added swelling of the "old" lymphatic leg but I'm pretty used to that after years of cycling. It was, in fact, the "new" lymphatic leg, on my right, that started to act up more noticeably. So I added a compression garment just for the right leg and the swelling went away. I had been able to "get away with" no garment on the right leg for most one-day rides, and did so on the first day. But, alas, that "new" condition is gradually progressing and I didn't want the swelling to thicken so wore compression for the rest of the ride.

I did massage two or three nights to help move fluid out of the legs. That's something we generally do regardless of our activity levels.

And after the third day of riding I found that my foot was more swollen and wasn't strapping into the bike shoe very easily. So on the drive to the next ride I compression-wrapped just the foot and brought the swelling way down and fit into the bike shoe just fine.

By now you know there were two days of riding in the rain. The big "soaking" day (see the post "The Art of Riding in the Rain") drenched everything. This reminded me how poorly our lymphedema garments "compress" when they're wet. Keep them dry, at all costs. On the second rain day they stayed pretty dry except around the ankles and I survived the day just fine

So, those of you with lymphedema, here's a few pointers to remember if you want to undertake similar activities:

1. Make sure it's okay with your doctor. But I'm afraid most doctors will tell you to stay home and keep your feet elevated. I say, go anyway (it's up to you), but go prepared and with an ability to remain flexible in your schedule.
2. Bring extra garments. They get wet. They don't dry out in a rainy trailer or tent or yurt or whatever your lodging might be on the coast, during a rainy week. Find a laundromat (we did, twice). You may need to switch out various dry garments.
3. Do your massage. I know, there are more fun things to do, and I didn't massage every night, either.
4. Bring your wrapping supplies if only to wrap a specific problem area (like my foot) or parts of a leg later (I've had my left leg wrapped to the knee for two days on the drive home).
5. Allow time for treatment by adding a day to your schedule. Our extra day, though, was given to curing the rash, not the lymphedema.
6. Certainly, don't make a major adventure your first attempt at pushing your lymphedema legs. Get to know how your body responds to the exercise and how your own leg (or arm) is going to respond as well. 
7. Enjoy yourself. Don't let worries about your lymphedema keep you locked inside. Unless you are prone to open sores and infections (that's a very different circumstance than my own and calls for much different management techniques) there really is a lot that you can do if you are aware, careful, and take it in smaller steps. I've been cycling for many years with lymphedema. In fact, my first certified lymphedema therapist, Lindsay Benson, who taught me all I know about massage and wrapping just 2 years ago, said my leg was still in very good shape (no thick edema) after 40+ years probably because of my continued exercise - cycling and skiing and hiking. Gunter Klose, a world expert on the topic of lymphedema who runs the Klose Lymphedema Clinic in Lafayette, Colorado, told me last year that I should continue to exercise in all ways as much as I can. "And keep your weight under control," were his parting words of advice.
8. Oh, yes, one more pointer: if you're going to bike the Oregon coast call me if you need a partner. I'd go back in a heartbeat.

Heading home

We regretfully left the beaches of Oregon Oct. 4 in advance of a new storm system that the folks at Tim's Crab Shack in Bandon (excellent fish tacos, their own smoked salmon and crab cakes) warned us about. We were heading south with the trailer to do a final day of riding from Humbug Hill south from Orford to the state line. So it wasn't going to be an early start. As we were enjoying a chat and food at Tim's, the weather started closing in. They said high winds were predicted that afternoon. After the two days of wet riding, there wasn't room for yet another. Jim will post an update of those two days soon. And we'll post a link to our series of high resolution photos of the entire trip at our pharkles.phanfare.com site.

Sunny morning on the beach

So we moved inland to Roseburg hoping to meet up with some ladies from California who we'd met through Airstream forums and Facebook. Their diesel truck runs on waste vegetable oil (something Marsha has been researching in Boulder for our next generation of tow vehicle). They have replaced their lights with LED lighting to save electricity. And they have installed a "Nature's Head" composting toilet instead of having a holding tank for "all that black stuff".

As for the bike trip, it was without a doubt, absolutely and totally, one of the most exciting things I've done in years. Following seeming secret roads through the dark forest; meeting other bikers from various countries and with different purposes; testing one's physical abilities for several days. It had its own stresses (the logistics, the weather, oh my) but they were a welcome change - which is what a vacation should do. No, I didn't ride all the miles down the coast - not sure I really ever expected to ride each and every mile. But I did ride about 250 total miles over five days. The highway measures about 365 total miles; the coast bike route (as we learned, there are a few variations of the route) measures somewhere between 365 and 390. 

Mickey and Buddy hated
to leave the beach, too.

There's no regrets; no "shoulda, coulda, woulda" in my head. We had a wonderful trip. Every day was a great cycling day, no matter the weather.

Seven Devils

The last day of riding, as it turns out, was a gift. The forecast was for rain and only rain for days. It had rained all night at our Sunset Bay campsite. The Airstream was dripping inside and out, most from condensation on the metal walls (this never happened in Colorado!) and some from a leak around the skylight. But the day broke with blue sky overhead and clouds in the distance. Marsha pushed me out the door, promising to meet me later in the day in Port Orford 60 miles from the California state line.
I geared up, lubed the chain from its previous drenching, aired the tires and hit the road. First turn was to Seven Devils Hill Road. Oh, that name didn't sink in until I turned the corner and had to stand. No problem, I thought, we'll knock this off and get down the road. I still had lessons to learn from DEAN or Enzo or something cosmic out there. Because after another two miles of steep I see painted into the road, "Devil #1" in white letters. Oh, I did laugh aloud at that.
A few miles of rolling and climbing and sweating later, I see the same paint, "Devil #2" followed by, "Don't you just love it!" Somebody before me had quite the sense of humor.
This road challenged my confidence not in its climbing but in its route. I had a map and the name of a road and two connecting roads to take on the way to Bandon. I left houses and driveways and chasing dogs far behind. There were no signs that this was still the official Oregon coast route. I was far out in the middle of logging country, new trees on this side and old trees over there and fresh cut dirt over yonder. At 8.5 miles I was supposed to find my next turn. It was almost 10 miles, had I missed it as Devils #3 through #5 passed by? And then Devil #7 appeared just as the road turned and the name changed to the one I was looking for. Way the heck out in the middle of somewhere on the Oregon coast. Two miles later I found the bike route sign, was confident I had always been on course, and cruised on into Bandon.
I met up with a young couple from Britain in Bandon enjoying the rugged coast. Marsha got some photos as she passed through a few hours later (will share at Pharkles later) - I didn't dare carry the digital camera any more, what with the threat of another rain day. And rain did come, but not till after I'd enjoyed a wonderful lunch at a surprise deli in a town of 25 souls along the way to Orford. The Brits were carrying all their gear on a ride from Anchorage, down the AlCan highway to Vancouver, the San Juan Islands, to Seattle, down to Portland, then the coast and now almost to California. They were heading to meet friends in San Francisco. Light rains came after lunch and this time I had a different jacket to stay dry. DEAN had taught me something about riding in the rain after all, and nobody got drenched.

The Art of Riding in the Rain - Day Four

Beverly Beach to Florence: 56 miles

All week, to paraphrase an old rock song, “I fought the rash (law) and the rash won.” The rash that started in Denver wasn’t letting go but instead was taking all the body territory it wanted. My head was itching, for crying out loud. I'd knocked over at least three trees trying to scratch my back!
So on Friday I visited a clinic in Newport instead of biking. This was the advice Marsha had gleaned from her phone research the prior day. It was just the ticket: they shot me up with some steroid to calm things down (calm the rash, not me!) and it worked. The doc said it should last for 3-4 days.

I was on the road again the next morning. With 132 miles in the saddle and a rest day, I was eager to roll out of Beverly Beach and head south. The sky threatened, but I had rain pants, booties, gloves, and my trusty old Gore-Tex jacket. “Bring it on!” I got 22 miles behind me before the rain came on.

Now, if my bike, who’s named DEAN, were telling the story like Enzo, the narrator in the book, “The Art of Racing in the Rain”, he’d probably say something about a cyclist first needing to check all his gear to make sure it’s working right. Like racing tires. Or rain jackets. I’m sure DEAN was laughing or at least snickering at me as rain trickled then poured through the nylon shell I could have sworn was Gore-Tex.

What DEAN would also probably tell you is how important it is to be prepared for the unexpected. I was, to some extent. As the rain quickly penetrated my trusty old jacket I was thankful I’d switched from a simple cycling jersey to a synthetic polypropylene t-neck just before leaving the trailer. I was certainly drenched to the bone, but the nylon kept the wind off and that shirt kept me warm and marginally comfortable. I shook my head a few times, still smiling in the rain, in realization this was turning into an Adventure of the first water. “Yeah!”

I rode past Seal Rock (no seals), Yaquina Bay (pronounced Ya-Qween-A – but no Queen-A), Yachats (Ya-Hots), and navigated the tunnel at Heceta Head (the second of the two on the route). I suspected another cyclist was ahead of me because the lights were still flashing to alert drivers. It was odd, though, because when the rains come you hardly see any bikes on the road. Hmmm. So here I was without a rain jacket, biking in the rain when most other (What? Smarter?) cyclists were huddled in their tents, yurts and trailers or hotel rooms out of the rain? Except maybe one, just ahead of me.

I caught up to a biker in a bright yellow water-proof rain jacket, panniers and pants under a tree a few miles down from the tunnel. Our destination, Florence, was less than 12 miles away. I’d ridden almost as many miles as my previous days, most of these in the rain, and was feeling great. The other biker said his name was Ocean – no kidding, that’s what he said – and he was biking to San Diego. We agreed the rain sucked as we ate our energy bars under dripping branches. I wasn’t too thirsty.

I left him at the tree and made good time down the slight grade toward Florence. Then the Adventure got even more Grand: the back tire went flat as the rain came harder. I pulled over into a driveway and could only shake my head and, to nobody in particular, exclaim aloud, “Okay, enough with the Adventure already!” At that point there was no “getting wetter” – there was no dry spot left. So I changed the flat with a fresh new tube from my gear bag. DEAN, and Enzo, would have been proud: bring the right equipment (rain jacket the exception).

Ocean caught up to me and we pulled into a Fred Meyer supermarket together, one of the Kroeger chain, huddled under the roof, and declared we were done. If I felt I could have done more miles, perhaps it was that steroid shot the prior day? And then Marsha pulled into the market within minutes of my arrival – perfect timing, planning, whatever you want to call it. But, alas, I’d not put any change of clothes in the car. DEAN sat in the back of the car and told me I still had lessons to learn about riding in the rain.

Third day on the road

Sandlake to Beverly Beach State Park: 45 miles

There is something a bit unnerving about watching your wife drive away towing your Airstream, its silver butt slowly waddling out of sight toward the beaches, and just a bicycle and pack to find her again. I was pedaling from a wide spot in the road below Cape Lookout called Sandlake (pop. 25) on the Oregon coast bike route. I had no idea I’d be experiencing this same unnerving feeling two more times that day.

Along the coast

We were on the smaller coastal roads away from busy Highway 101 with its logging trucks and motor homes (yes, and trailers, too), which made the cycling delightful. Our plan was to meet up at the end of the day at Beverly Beach State Park, nearly 50 miles down the road. This being trailer moving day, we had to pack up and get on the road from Nehalem Bay State Park, which gave me an early afternoon instead of morning start on the bike.

Just past Cape Kiwanda, the third of the Three Capes, I was well warmed up and cruising through Pacific City (pop. 1,000 – the obvious metropolis to Sandlake) rubbernecking at the birds, beaches and surf, sand and sometimes even sun. I spotted our Airstream along the road up ahead. My wife and incredibly devoted, unselfish support driver, Marsha, had found cell service and was calling our insurance company. She was looking for help get rid of my rash that had started before leaving Denver. Red itchy bumps were consuming my back and then my chest and basically everywhere. One tube of lotion from my doc wasn’t going to touch this expanse, so we were trying any alternative remedy we could think of including corn starch. She explained what she was up to and waved me down the road with a simple, “Keep riding.” That was “Unnerving Departure No. 2” – but this time I was the one leaving the trailer behind.

Ten miles later I turned onto old highway 101 at Neskowin (six times the size of Sandlake) to climb 600 feet over Cascade Head. I texted Marsha then I quickly lost my cell service. All my trust was in our plan to meet at Beverly Beach and the map in my pack to get me there. This section of the ride turned into one of the most remarkable stretches of road I’d been on in years. The rough un-tended pavement wound gradually up and past some houses, then a school, then a few old logging roads. It climbed steeper into a magically dark green lush, drippy forest with a canopy that kept the roadway wet and the hillsides a mystical misty land of emerald moss-flocked trees. The curving, climbing road crossed a single-lane bridge, cement flowing over with thick, green moss-fleece toward the gully below. I figured it doesn’t snow here much, and tried to recall how few roads in my own state of Colorado could support such a steep grade.

I reached for my Granny Gear and continued the six mile climb. Suddenly I was greeted by a loud, sharp voice passing me from above, “You’re almost there!” An older guy (in reality, probably not much older than me) passed me going downhill like some bushy, bearded Hobbit on a rocket: a one-speed cruiser bike, backpack and paisley or polka dotted shorts, I wasn’t too sure he went by so quickly. And two turns later, I’d topped out and started four miles of downhill to a surprise bridge closure and detour. “Oh great,” is not an exact quote but I was worried the detour would keep me from meeting up with Marsha before dark.

I had no choice but to pedal the detour. In 100 yards I was moving quickly downhill toward Highway 101. And as I got closer I was astonished to see our silver Toyota 4Runner pulling the Airstream right past me. I thought of waving, shouting for Marsha. The urge to catch her was surprisingly strong, and of course silly. The third Unnerving Departure of the day had happened. I stopped and texted as the trailer bobbed out of sight – telling her that I was now behind her.

Then I pedaled onto the highway en route to Devil’s Lake and Devil’s Lake Road, Lincoln City, Gleneden Beach, Lincoln Beach, Depoe Bay, over Cape Foulweather named by Capt. Cook, the first Englishman to set sight on these shores (foul weather kept him from beaching at all here), Otter Rock (no otters) and Devil’s Punchbowl State Park (no punchbowl). Then as I passed Boiler Bay I saw our unmistakable Airstream and Marsha, binoculars in hand, watching whales in the bay and making new friends of fellow whale watchers. She drove me to Beverly Beach State Park, saving me the last 5 miles of pedaling.

Day Two on the road

Nehalem Bay State Park to Oceanside: 44 miles.

This day I rode directly from the trailer camp at Nehalem Bay; it was sunny but a bit cool around Nehalem Bay and then Tillamook Bay. I counted Nehalem, Trask, Wilson, and perhaps two other rivers draining into these two bays - it's the rivers' destination after all, quite different from riding near river sources up in the Rockies. I guess I was surprised to see so many separate rivers flowing into the same bay right next to each other.

The mouth of Nehalem Bay

On this trip I’m traveling “day pack” light, in contrast to almost all the other riders we see on the coast route. They’re backpackers on wheels and carry all their food, shelter and clothing. Their pannier bags weigh down their bikes front and rear. Many ride modified mountain bikes with fenders (a couple from Britain cycling from Alaska to San Diego) and others ride a road bike like me with drop handle bars and panniers front and back (that was like this guy named Ocean – no kidding – who I met in a horrible downpour and who was heading to San Diego as well).

On the other hand, I carry just a fanny pack with rain gear, a few tools, patches and tubes and energy bars. Our Airstream is our base camp and a significant part of our week, it turns out, is planning for moving the trailer to a new campsite. That ended up having a greater impact on the week’s schedule than we’d expected. Our general approach was to locate the trailer, shuttle north and ride south to the trailer and camp. The next day I ride south from the trailer to a designated meeting point where we can ride together or just shuttle back to the trailer.

The Tillamook Bay RR connected
Nehalem to Tillamook Bay

On this day the plan was for me to ride solo to Tillamook, join Marsha to enjoy the start of the Three Capes Route from Tillamook to Oceanside, Netarts, and then she or both would bus back to Tillamook. On my way around these two bays I saw many small fishing boats clustered in parts of the bay a few yards from each other, every one with lines in the water. Later we learned that the salmon run had started and people were crowding the rivers all down the coast to catch salmon on their way upstream to spawn. And we thought that would happen in the spring? 

We discovered in Tillamook that the road had washed out between Netarts and Oceanside (the Brits told me a few days later they got through on bikes) so we improvised a ride out and back along the water, looking across Tillamook Bay where I’d just pedaled.

Marsha talked this fisherman into
posing with his catch at the Salmon River

In the end it was a very nice day that gave me an opportunity to push some solo miles first and then ride with Marsha. So far the ride is going about as planned, the first couple of days are building miles and conditioning for longer miles later in the week.