" ROUND FIVE "
September 09. 2006
Dear Friends and Family,
Charlie picked me up from the hospital Sunday of Labor Day Weekend. This last round of chemo was round number five, and went very well. My hospital room faced Saint Nicholas Greek Church, and so I was able to watch the Greek Festival from my room and could hear some of the music through the windows. At one point on Saturday, Charlie and I left the hospital and sat across the street from the activities, so that I could not only hear the festival, but I could smell all of the delicious food as well. It was a wonderful diversion from my sterile hospital room and 6 days of hospital food.
Even after five rounds of this very aggressive chemo, I have managed to keep all side effects to a minimum. My focus is on staying healthy. Charlie and I knew going into this chemo that my cancer is so rare and so aggressive that it usually doesn´t respond to chemo. We reluctantly agreed to chemo in order to buy more time to find another answer. Well, chemo is having a response and an impact as well. After two rounds of chemo we have reduced the liver lesion by 2 cm. in height, width and depth. After four rounds of chemo we once again reduced the liver lesion by 2 cm. and began to reduce the heart lesion by 2 cm. as well. A cardiac echo one week following the MRI seems to show that even in that week; the tumor around the heart may have had further reduction. Our plans are to do one more round of this chemo (M.A.I.D.), beginning the week of Sept 18th, and then follow up with an MRI at the first week in October. After that, we will try a combination of two chemo agents, Gemzar and Taxotere. These are not new chemo agents, but the combination is now being studied for sarcomas. We don´t know how it will affect an Angiosarcoma, but we remain very positive. With this chemo, it will not be necessary to be hospitalized for 6 days at a time. Instead, this will be a 3 hour, in-office infusion. I can go home that same day. I always do much better when I am at home.
As you know, Charlie and I are not used to having moss grow under our feet. Charlie has taken advantage of all the time in Saint Louis, and has been very actively working on his own recordings of various harpsichord pieces. He has made many, many breakthroughs in his recording and performance. This is a very difficult task which is made easier by owning two incredible instruments built by Walter and Berta Burr. Walter is a master craftsman and Berta is a master artist, who lives in Up-State NY.
I have continued to paint both in the hospital and at home. I am constantly working on improving myself, and I am making breakthroughs as well. I can very proudly say that I also have two people to thank as my inspirations. Berta Burr´s artwork is what once again sparked my interest in painting. I had not painted in almost thirty years, but with Berta´s help and encouragement, I began to paint again in January, 2005. I struggled, and learned from my own mistakes. When I met Mikel Wintermantel in August of 2005, I learned how to approach and think about a painting. Mikel held a painting workshop at the Copley Society in Boston in August, 2005. I attended and marked that point as a new beginning. Once back in Saint Louis, I worked very hard to make myself better and better. I am very proud to say that in August of 2006, Charlie and I both flew to Boston and I once again attended Mikel´s workshop. Still undergoing treatment, I had the added benefit that Mikel´s wife Cheryl is an R.N. and could administer my medications. I would encourage you to look up Mikel at www.mikelwintermantel.com He might inspire you as well !
Flying to Boston was a milestone. It was the first trip Charlie and I took which was non-medical. We felt freedom. Our other milestone was a trip to Chicago. It was very important to me to spend this birthday, more than any other, with my parents. We planned a surprise for my mother at Zhivago´s restaurant in Skokie. It is a Russian/Ukrainian restaurant with live entertainment on the weekends. My father knew we had reservations and just told my mother he was taking her out for the evening. I cannot express how wonderful and magical the evening was. Wine, Vodka and Cognac were flowing throughout the entire restaurant. We were the only table in the restaurant where English was spoken as a first language. Let it suffice to say that at midnight we had to coax my parents off the dance floor to leave.
I feel honored, charmed and blessed for the friends and family that surround me. I thank you all for helping me through this chapter. Your cards, letters and prayers are all appreciated. I will touch base again and celebrate after the next MRI in October. Let us hope that we can start a new chapter by then. If not, maybe we can start a whole new book ! Maybe one with a bit more humor !!!
Love Always,
Randy