Tuesday, August 16, 2011

Three Years

The last three years have been wonderful. I feel only gratitude for my new heart and the life I have been given. Today I spent 12 hours in the operating room doing what I love. I came home tired, but in a good way. Mostly, I cherish my continued companionship with Barbie, my family and friends. I used to think that if I made it to three years I could then tell Stanford that they didn't waste a heart on a primary amyloidosis patient. Now, Barbie and I don't really think in dates, endpoints or statistics. Life carries on just like it would for anyone else; with no particular thought of future mortality. We are so blessed.
Thank you to God, to my friends, to my donor and so many that have helped us never feel alone or without hope. Here's to many, many more years.


Sunday, August 7, 2011

Memory Refresh

Wades Lake
The magnitude of the scene took a while to sink in. I didn't even bother to drop my pack. Chris had said, "You think this is beautiful? Just wait until we get to the top." She was right. Immediately I was transported back to a place of my childhood; a place that I had remembered a thousand times. While hiking through Northern Yosemite at age 13, we camped at a lake that was so serene it captured my juvenile sense of awe. For years I would actively recall this place when I was anxious and couldn't sleep, when a nerve was struck while in the dentist's chair, while getting a bone marrow biopsy. The memory of its beauty would calm my nerves and leave my pain behind, (literally, in the case of the aforementioned biopsy.)
Three years ago I watched as Caitlin and Barbie left to go backpacking. This is the tradition at our annual church Girls' Camp. The 4th year girls, ages 14-15, have the opportunity to backpack and sleep overnight in the wilderness. This teaches them survival skills and builds their confidence. For the prior decade Barbie and I went on these hikes as leaders. I had gone with Rebecca 5 years previously on the Appalachian trail in Vermont. Now it was Caitlin's turn. In January of 2008 I began training to get in shape for the June hike. Unfortunately, as the months passed, I only got weaker. Finally, the day before we left for the hike I was told that I had restrictive cardiomyopathy, etiology unknown. As they walked into the woods without me I was so sad. I loved to backpack; it always made me feel young. I knew that I would likely never be able to strap on a pack again. I was wrong.
This last year has seen significant improvement in my endurance. My heart is strong and, when I am not on chemotherapy, I have the motivation to move. Chris Alston, the leader of the hike, allowed me to come along this year. My brother in law, Craig, was also going with his daughter Catherine.
The first day was only three miles, but the vertical climb was just under 1600 feet from 5000 to 6600 foot elevation. The last mile was the hardest; very little shade and very steep. I moved slowly with my 35 lb pack. This gave me time to really enjoy the wildflowers. An unusual number remained along the trail this late into the season,likely due to the late snow-melt that has kept the alpine flora in bloom. My favorite was the Tiger Lily. I had never before seen one. As I lifted the drooping orange blossom I was surprised to see countless brown spots inside, "Of course." I thought, "Hence, the name."
Craig never left my side the entire hike. I know he would have carried my pack at a moments notice. At the last quarter mile, as the trail finally leveled out a bit, President Perez called out to the 25 girls on the hike and said, "Let Brother Kevin lead us in." The gesture gave new strength to my tired heart. As I walked to the lake's edge there was thick green grass under my feet. The clear blue waters ended at the base of two separate snow capped peaks framed by sun and clouds overhead. The light breeze rippled over the water's surface as the sound of effluent in the nearby brook bubbled continuously. It was as if I stepped back in time 38 years.
We spent two nights camped there. I had forgotten how much bending over and squatting camping involves: pitching tents, filtering water, cooking, gathering wood and building fires. I was frequently light-headed from getting down and up. Notwithsatnding, in the end I would have to say that my health score for the last 7 days has been 100.
The week ended with Barbie and I celebrating 30 years since our first date and 29 years of marriage, both yesterday on August 6th. We plan many more to come.