“I may not have gone where I intended to go, but I think I have ended up where I needed to be.” ― Douglas Adams

Boating and Rich’s cancer journeys seem to be always tied together in my mind. In 2003 we were prepping for a trip along New York’s St. Lawrence Seaway… home of the Thousand Islands… An island being defined as any land permanently above water and supports at least one tree. We were renting a houseboat for the week … determined to see as many of those islands as we could. I buzzed Rich’s hair short to make life easier and in doing so found a couple of small cyst-like bumps. We agreed to get those checked out when we got back.

I’ll always be thankful that these bumps, which turned out to be lymphoma tumors, manifested themselves where we could find them. But as our family motored our way around the Seaway, we were blissfully unaware what was to come. Our biggest worry was getting this crazy steel tub from port to port and to make our way through the canal locks without totally demolishing either it or any other craft. Sometimes we actually succeeded!

And what a week it was. Jumping off the upper deck into the clear water as huge steamer cargo ships, that all seemed to be named “Svorden Norden”, chugged by. Swimming, fishing, grilling, wending our way in and around so many of those islands, stargazing those clear nights…running around the deck as we docked or went through those locks.

The locks. Patiently we would wait as the water slowly filled, bringing us one step closer to where we needed to be on the canal. The wooden gates at least ten feet high held the water back, little waterfalls above us where the wood had separated over the years…these locks were built in 1830! Men on a catwalk above would turn the iron wheels which released the water into our bay. Once our lock was filled to the top, our level in balance with the next, the gates would open and we would move forward, another wooden gate ahead of us. Waiting once more. Over and over to take us from the lows to the highs until the last gate opened and the river spread before us. Our new journey revealed.

Lessons in patience as we were lifted to our destination.

Is it that the breezes are beginning to pick up from the south, bringing with them a tang of salt? Is it the promise of summer days on this island we call home? For some reason, boating has been on my mind. Well, okay, I do know why… Rich’s feet have been looking like pontoons these last few weeks… he’s walking on veritable flotation devices!

From atrophied to pontoons overnight

As it seems to be after each hospitalization, when he gets home, his breathing worsens. Once again, we’re back at the pulmonary doctor who, once again, gets his meds more in line with what they were at the hospital. While this does improve the wheezing, whistling, crackling symphony of each breath, this time we got some unwanted side effects in spades… the fluid in his lungs just seems to fall right to his feet. And as time goes on, fill up his legs as well. Someone has turned the iron wheel.

We marvel at just how much skin can stretch. But when the skin begins to dimple as if he suddenly has cellulite and his feet hurt just from the pressure alone, we call the doctor. Lasix, a water pill that has been in our medication arsenal before, is begun again. After a few days, there is no reaction. Another call to the doctor and an every-other-day additional dosage is added. In the meantime, we make a concerted effort to keep this pontoon boat upright… he, like our houseboat, has a wayward list. As he moves around the house, once more he’s holding on to keep from falling. Sometimes he succeeds.

More consults. His lungs clear, we can begin to wean off the suspected culprit, our nemesis prednisone. Ten milligrams at a time, every five days, we drop the dosage. We accept the emotional ramifications, the shakiness, the off feeling of the withdrawal because, frankly, we just want this medication gone. And no matter what the increments, there is always a withdrawal effect.

Finally, it’s slow and not quite steady, but the pontoons begin to deflate.

We welcome back each evidence of bones even to the tiniest of pinkie toe knuckles. While Rich’s legs once more have the shrunken look of atrophied muscles, we’re glad to see his shinbone is back from its long stay under water.

We do, however, mourn a missed opportunity. Gone with his flotation devices is the possibility of testing his ability to walk on water.

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