Saturday, October 11, 2008
cabinets and recipes
Thursday, October 9, 2008
Impressions
I remember the first time I went to the Chicago Art Institute. I was captivated by the collection of art from the impressionist period. I find that I have always been drawn to art from this period. My favorite museum in Paris was the Musee d’Orsay which housed a magnificent collection of pieces from this period, Manet, Monet, Van Gogh, Serrat, Renoir and many others. Someone once described impressionist art to me as the image one might notice in your peripheral vision as you were passing by a scene. It is a moment in time, more of a glance, out of focus. This is embodied in a painting by Manet (Gare Saint-Lazare) in which a woman is sitting on a street bench as a train is passing; a mere glance by a passerby.
I realized that this reflected many moments in my life in the past. With so many duties and distractions, many moments passed by in a blur. Moments that should have been the focus of my attention. Sometimes I would sit a basketball game or piano practice of my daughter and instead of focusing on them; I would be playing a game on my Palm organizer. The game or music would be seen or heard, but the essence was missed. I had so many responsibilities, that even when I was with someone, I would feel anxious to move onto the next task or item on the schedule, not giving them my full attention. This was the impressionist period of my life.
This changed as I begin the period of illness whose symptoms can only be described as classical. The problem was that these symptoms individually were all common to other benign conditions and were easily dismissed as indigestion or de-conditioning, fatigue, poor appetite, difficulty swallowing, hoarseness, unable to walk up a flight of stairs, stomach upset etc… Taken together they were classical for Amyloidosis. But who has ever heard or thought of amyloidosis? It would be like hearing a piece of music from the composer, Ernst Wilhelm Wolf, the style would remind one of the classical period, and it could easily be ascribed to Mozart or Haydn. So it was with me.
The diagnosis was finally made and my life then can only be described a surreal. To different realities juxtaposed; Kevin, the guy for whom everything always worked out, the lucky one, was now facing a fatal illness, incurable. It was difficult to grasp. Everyday revealed a new detail which altered the path in many directions, Roseville, Sacramento, a pleural effusion. malnutrition, edema, a cardiac output with half the normal flow. How was this possible? How did I minimize my symptoms so much that I did not see it? Santa Clara, a biopsy is done; Amyloidosis, then to the Mayo Clinic for exhausting studies, back to Santa Clara, Dopamine, Lasix and confinement; Hard decisions and finally to Stanford for a heart. And so on. I realize that all of this may seem rather abstract, but helped me to see what I had been missing.
The one true thing, the constant reality in all of this was Barbie. I never feared dying or pain or anything. The only fear was leaving Barbie alone. I relied on her, not only for emotional support, but for the first time in our marriage, for everything. She drove, she shopped, she lifted the heavy stuff. But, whenever we had a moment alone, we began to realize how strong our love really was. There were some tender moments so sweet, so powerful, that they changed us forever. Thus began my romantic period. Form and function folded into feelings. I see the color and emotion more clearly. And the recurring motif is gratitude.
Now when I go to hear Caitlin in her piano lesson, my Palm remains in my pocket, no games, no distractions. I want to focus on the music. I not only hear the notes, I can feel her essence expressed through the medium of the piano. If she makes a mistake, I don’t notice it. The dynamics, the rhythm, the passion is all I hear now. And it is so beautiful. Things are so much more in focus now. I hope that I remain in this Romantic period and never again experience life as a passing glance.


Monday, October 6, 2008
Strength from others
Open House
It was wonderful to visit with so many friends and family at the open house last night. I am especially grateful to my sister-in-law Kathie for all of her help and support. Even though we were only away from home for two months, it felt longer making a reunion, of sorts, that much more enjoyable. It was a beautiful evening in October.
Kevin
Saturday, October 4, 2008
Heart of Friendship; Surgeons and Seamstresses
Then a thought emerges as I realize that a surgeon's thread is what binds my new heart to me. You hope that it is strong and will hold.
Time passes and distance separates us, but the rich memories that we share can never be erased. They will keep us warm as do these quilts.
Kevin
Directions
View Map
Thanks,
Kevin
Thursday, October 2, 2008
Chapter III
We saw Dr Schrier on Monday and he recommended that I start on treatment for the amyloidodsis. This is sooner than I expected, but I am excited to finally attack this 'bad boy'. He didn't find any other significant areas of involvement with the disease. The plan is to use oral chemotherapy with Revlimid and Decadron. Revlimid is a new drug which is similar to Thalidimide (a very nasty drug that caused birth defects in the 60's). It has been used with good success both with Multiple Myeloma (the plasma cell cancer that my Dad had) and amyloidosis. I will also take Decadron, a very potent steroid, (like super-prednisone).
Once again, my case is unique in that they usually don't treat patients after a transplant, so they are starting at a low dose because of all of my other anti-rejection drugs. It's fun to be the 'Guinea Pig'. If the medications don't drop my protein levels (kappa light chains) to normal. Then I will still need a stem cell transplant. Of course, we are hoping for the best.
One downside of this is that the folks that make the blood test for rejection (Allomap) don't know how the Decadron will effect the test so they don't want me in the Allomap program, which means more heart biopsies. Which to me is a small price to pay if the meds help me.
My friend, Debbie, is doing very well after her transplant and is waiting to see how they treat me so she can follow in the same path.
I am feeling so much better and walk 2-3 miles a day. I get stronger every day. I plan on remaining in the middle of this story for some time. The story's end will have to wait for another day, and probably another author, hopefully one of my grandchildren.
Kevin
