Strawberry Monday

It's Wednesday which means we are now in the comforts of Frisco, Colorado courtesy of Bob Brown (thanks again, Bob!). We're in a beautiful house tucked away in a wooded area in the foothills of Mount Royal. Craig is resting after taking a wheelchair walk around parts of Lake Dillon where sailboats glided between Frisco and Dillon and bikers whizzed by with the requisite "on your left".

We left Avon (Vail area) yesterday afternoon after a slow morning of coffee and chatter. Just as the days before, there was no rush. We had no doctors appointments to scurry to, no need to be at the apartment for medical supplies delivery. Time was dictated by "the pace of Craig" and what he wanted to do. Monday, he wanted to take a mountain drive, so Emily identified one that would criss-cross the mountains in an hour's time ending at an old mining community, Leadville. The drive was long enough for Craig to feel "out and about" but not too long to wear him out completely. The drive was breathtaking. Though a hail storm awaited us in Leadville, Craig wasn't deterred.  He elected to drive headlong into the storm in search of a lake he once visited. After driving a few minutes out of town, we came upon Turquoise Lake. Craig told us he camped there back in the day, spending most of the time reading books on the banks. It was nice to be a part of that memory.  Amazingly, Craig felt well enough to boldly try a strawberry - his least favorite fruit but one he was eager to eat (at least part of). Whether it was impulse or the drive to have some source of nutrition other than the popsicle and tsp. of sorbet he had a few days ago, he threw caution to the wind with a few small bites.

We drove back to Denver later in the afternoon just in time for one of Craig's friends to deliver his latest concoction of TPN. Craig has maintained the desire to go back on TPN intermittently for fear of "wasting away" or "starving" or "being left alone in the middle of nowhere" exposed and left to his own defenses. His language is a window to a more potent fear, one more powerful than the consequences of maintaining TPN. Though the TPN is less than a liter and a departure from his earlier "high-octane" TPN profile, it serves as his bag of mental comfort - his peace of mind.  We reconfirmed his wishes again, just before attaching and starting the pump.  We ran through the disadvantages and advantages one last time to ensure he knew what he wanted and what we were doing. We restated that the TPN no longer provides "nutrition" to the body in a sustainable and beneficial way (i.e. proteins, etc).  We also mentioned how the fluid will likely continue to pool in his extremities/lungs and perhaps exacerbate his pneumonia or other infection risks. Always aiming for a balanced perspective, we mentioned TPN's "pros", or the potential for some caloric intake.  We stressed that there's a lot of uncertainty with both scenarios, and that there's no assurance that the TPN wasn't somehow stabilizing his electrolytes, etc. That is an unknown. We mentioned that either road would lead him to the same or similar outcome: TPN is not going to change the process that has begun. Knowing the risks, Craig decided to continue the TPN and we are supporting him in every way possible.

The TPN will be on an every other day regimen and over a shorter, 12 hour period. We asked Craig under what circumstances, parameters, and symptoms would he want to discontinue TPN outright and he indicated further troubles with breathing, further swelling causing discomfort, and confusion. After turning it on, I asked him how he felt (from a psychological perspective) and he said it was comforting to be on it again -- that it gave him peace of mind. We do a litmus test each day to make sure he's still relatively comfortable. So far, it hasn't changed his energy or dramatically increased the swelling, but it seems to have given him a safety rope to hold onto as he navigates through this unknown.  Our priority is to make sure he's comfortable -- both physically and psychologically.  The last thing we'd want is for C to feel nervous or scared while he's enjoying his time in the mountains.

That night, we adjusted the chairs so that Craig could have front row seating under the starlit sky. The girls "grabbed floor" next to Craig and joined him in gazing at the stars through one of the balcony windows. Though too dark to see, his eyes felt full and excited; his voice seemed more alive as he exclaimed "we're front and center with the Big Dipper!" We lay there long enough to wander through childhood memories, various "did you know" comments, and lively black hole discussions. The familiar sound of TPN's wheezy pump complemented our chatter and filled the quiet spaces. Instead of something that faded into the background, it was unnervingly apparent. Though familiar, the sound now represents a different time, a tenuous time, a time that carries the knowledge that it's mostly dressing and no longer the meal. That knowledge is inescapable and sad.

Jill and I awoke deep in the night to Craig moaning and asking for help. His tail bone takes the brunt of his weight, now that he's mostly sedentary and must sit upright to help his breathing. Over time, it has become excruciatingly painful for him, enough to wake him from sleep and call for help.  This night, Jill and I helped roll him to his side and I applied a lidoderm pain patch directly to his bone-thin tail bone and rear-end. It filled my heart to help Craig in such a tender and personal way, yet it startled me to feel just how thin he has become.

Later that morning, Emily, Jill and I awoke again to him panicked, and gasping for air.  Again, he called for help and we were there. He was unable to breathe and panicked that he couldn't roll himself to another position with his own might. The fear in his voice cut to the bone. We helped right him and after a minute or two of panting, he calmed down enough to be repositioned back to bed without having to dramatically increase his supplemental oxygen.

The morning's trauma didn't seem to faze him and by early afternoon, we were off to our second and final destination -- Frisco.  After a brief rest, we took Craig on a wheelchair walk (which he calls a hike) around the neighborhood. A subtle smile curved his lips and brightened his eyes. I told him how good it was to see him smile and he replied "I'm really happy to be outside". -- E