Wednesday, May 26, 2010

The Perfect Day

Last Friday was the perfect day. How, you may ask, is it possible to marry off your daughter in a city 600 miles from both the groom and brides home, cater your own reception and have a wonderful time where everyone is relaxed and enjoying themselves? It is a wedding miracle. You start with the bride's desire for simple elegance. To that add two easy-going mothers-in-law. And finally, the focus was primarily on the temple marriage; the party that followed merely remained as a time to laugh and meet new relatives.
Rebecca and Jason beamed with excitement as they exited the temple to greet cheering family and friends waiting in the gale force winds blowing through temple square in Salt Lake City. Photos were attempted with hair blowing in all directions (for those with hair). Soon, Barbie and I were off to Draper, UT to a greenhouse/nursery where we would have the reception with tropical rains pelting the glass roof. It was a simple spread; cheese and crackers, mixed berries, saute'd meats with dipping sauces, sparkling lemonades and, of course, a huge cake of many colors (on the inside). Everyone pitched in to help.
Caitlin played the piano and sang a song that she wrote for Jason and Rebecca, followed by Rebecca performing a song she wrote specifically for Jason on their special day. Tears and lemonade flowed freely.
Barbie and I bid farewell to the newly wedded and as we drove back to the home of Barbie's parents, she observed with a very relaxed sigh, "That was the perfect day."


Thursday, May 13, 2010

A day with Caitlin

When I was sixteen I purchased the album, "James Taylor's Greatest Hits. It was the first record I had ever bought. He was the one artist with whom I could sing along because he is a true baritone. I have always wanted to see him in concert. When I saw that he and Carole King were performing together, I had to go. I bought the tickets on the spot. What I did not realize was the fact that Barbie would have her chemistry final on the same day. In addition, I later found out that it would also be the day of my four-month heart biopsy. I decided to take Caitlin as my date.
Tuesday morning at 4:00 A.M. Caitlin and I drove to Santa Clara to arrive in time for my 7:30 heart biopsy, 9:00 AM clinic visit and 10:00 AM chest x-ray. The heart transplant support group was from 12:00 - 1:30 PM and then I had a psycho-cognitive evaluation by Dr Epstein as part of a study he is doing on whether transplant patients remember to take their medications.
It was then time to go to the beach. Thirty minutes later we were in Santa Cruz on the Boardwalk. We loaded up on cotton candy and rode the Giant Dipper, an 85 year old wooden roller coaster. It certainly creaked like an 85 year old cripple. We dined at the Cheesecake Factory and then went to the concert. I was one of the youngest people in the audience. We watched as people rolled in in with wheelchairs and with canes and walkers. We knew we would be 'rockin out' (assuming you had brought your own rocking chair) No warm-up band; they started just after 8:00 PM. Given the combined library of these two prolific icons, we were carried away with one hit after another. James Taylor was fantastic, but Carole King stole the show. Her powerful voice filled the stadium with "I Feel the Earth Move Under my Feet". But the place went crazy, especially the women, with her anthem, "You Make Me Feel Like a Natural Woman". I was transported back to my high school and college days. Carole King looked like she was in her fifties, but then she mentioned that she had her first hit in 1956. The years have been good to her.
Soon we were back on the road for the 2 1/2 hour drive home, Caitlin slept (so did I), but we made it safely home.
The heart biopsy result was NER (No Evidence of Rejection!) That is always good news.
Caitlin and I had a wonderful day together making father/daughter memories. She really is a sweetheart to spend so much time with her over-nostalgic dad.


Monday, May 3, 2010


Yesterday I sat in the middle of the garden pulling weeds. (I cannot bend over or squat anymore.) I am not supposed to work in the dirt because I might inhale opportunistic infection agents such as aspergillus, So I held my breath for thirty minutes. (I have had some practice in breath-holding in the past few weeks). The intruders had overtaken the garden in a dense mat of intertwined interlopers. However, I soon found that one weed in particular was the source of the majority of the mass. It had spread its metastatic tentacles over a 1 square meter of space, occasionally shooting feeders down into the soil. I slowly separated this mess from the other weeds and drip system only to find it attached to the earth through one tiny stalk. I carefully pulled up on the stalk and, of course, it snapped leaving an equally elaborate root system below. We delude ourselves as we then look at the bare garden with pride; for the lurking roots our just waiting to return. I decided to rename my diease, amyloidosis, 'weeds'.
Somehow it feels the same. The tentacles of aberrant proteins choke off the good organs to prevent their normal function. I can 'Round Up' these invading plasma cells with drugs like Revlimid or Velcade. But there is always the risk of simultaneously killing off the good fruits of normal tissues. At one point I thought, "Only an atomic blast would annihilate this unyielding root system, similarly, a complete stem cell transplant might accomplish the same goal. Alas, these buggers are sneaky as it only takes one lone survivor to perpetuate the population. So we survive by occasionally trimming back the weeds to at least temporarily provide sufficient light, water and nutrients to the life giving plants that nourish us as we nourish them.
I took two months off from chemotherapy and felt wonderful, but the weeds grew and my light chains went over 160. After one course of Revlimid/Decadron/Cytoxan they have decreased to 130, but with the price of fatigue and malaise. But, the garden continues to grow and, with faith, this will be a very productive this year.