On Monday, Susan and I returned from a fabulous week with our friends Sigun and Joe Coyle in East Hampton. They have a beautiful home, with a pool, that is only minutes from the beach. We spent our days poolside or beachside. Sigun also prepared numerous culinary feasts for us and we spent the evenings eating, drinking Joe's fine wine and talking. It was so good to get away (my first trip out of Colorado in almost 2 years). The trip was also made possible, once again, by Susan's cousin Eileen. Given my back problems I was very reluctant to travel. So Eileen used her frequent flier miles and purchased a first class ticket for me. I used my miles to get one for Susan (didn't have enough for 2 tickets). The trip was fine and I was no worse for the wear when we returned. My, how things have changed. But this questions looms: Does this short visit with the Coyles constitute a vacation if I haven't worked for the past year?
I saw Dr. Rifkin on Monday and have officially gone onto a maintenance schedule. My dosages of velcade and steroids remain the same, but my schedule is now once a week for three weeks, and then the fourth week off. My IGGs are now 1338, down from 1415 about a month ago, and, for an even better perspective, down from 7500 in April 2005. It has been rough at times, but we have made much progress.
The hope now is for the maintenance dosage to be sufficient to at least hold the IGGs if not continue to reduce them. If they hold, then I'll undergo the prostatectomy in mid to late September to get the prostate cancer removed.
I am generally doing well even though I still have the reactions to the steroids: 'roid rage (the family runs for cover on Mondays and Tuesdays) and also the sleeplessness. But all in all I am doing so much better than a year ago that my spirits remain high.
Catherine is enjoying her new job and seems to learning much about finance and investment. May I be the beneficiary of that knowledge! Julia continues to sell coffee in the local coffee shop and both are having a relaxing summer. I think Julia is experiencing some boredom, however. She has been threatening to shave her head, just to see what it feels like. I had that experience only last year, but she doesn't seem satisfied with my verbal description of what it feels like to be bald headed. We'll keep you posted.
Susan is doing well also. She's entertained and fed many visitors this summer. She also continues to make new friends. While in a bookstore in East Hampton she found herself engaged in conversation with two other customers and before we left, she managed to exchange phone numbers with them so they could discuss new books for their respective book clubs. She is a wonder and seems to attract friends more easily than anyone I've ever known.
I do hope that everyone is having as fine a summer as I feel we have enjoyed. My best to all of you. Love, Dan
Thursday, July 27, 2006
Tuesday, July 04, 2006
Greetings from Ireland, New Numbers, a Family Reunion & Happy 4th!
First, a thank you to our good friend Mari Bush who sent the pictures from Ireland. Mari has been sending me hilarious (and some stupid) cards over the past year without fail, along with her latest in music, which I have greatly appreciated. She was recently in Ireland (for about the 25th time--no exaggeration) and sent the Get Well Pictures. How nice that she took the time to send good wishes while traveling through the Emerald Isle. She's a sweetheart. Thank you Mari.
I always feel that I have to start with the numbers report, so here goes: last Thursday received the IGG report from the blood drawn on Monday (June 26--Cates Birthday). IGGs continue their downward trend and are now around 1415 (not sure of precise number). Down from 1605 last cycle. We are in the band of normal ranges for IGGs (700 to 1700 approx.). The goal is not to get them to zero, as IGGs are a kind of antibody and we all need them. I just produce too many of the IGGs, which then crowd out the other antibodies, which makes me vulnerable to other diseases. The mechanism that is producing the IGGs is the myeloma. The excess antibodies also attack the bone as they multiply. I still probably have myeloma (they haven't done the definitive bone marrow biopsy for many months--no complaints here). I get my last velcadel/steroid infusion on Thursday, then 2 weeks off, then Rifkin plans to devise some sort of maintenance schedule to see if lower and less frequent dosages will hold the numbers down. I am constantly reminded of the events of one year ago and marvel at how far I (we) have all come. I was literally unable to walk last 4th of July and entered the hospital on the 7th needing 4 pints of blood, recently diagnosed with 10 or 11 new vertebral compression fractures, and in terrible straits. The anniversary date of this downturn has haunted me as this holiday has drawn near, and I will be glad to get through this time, as it carries such heavy and difficult memories.
The day of the new numbers report my family also arrived for a celebration of my Mom's 80th birthday. Her birthday is actually August 30th, but we planned this a few months ago for a time we thought I would not be in the hospital, and we were right. My brothers, Mike and Tom, my sister Kathy and her husband John, and my mother and her husband Bob Walton, spent the last 4 days in Denver. Activities were a bit more subdued than the reunion of 24 high school classmates, but it was a fine time. Susan, of course, once again hosted a dinner at our house on Thursday night and we spent the evening on the patio enjoying the company and a beautiful Colorado evening (Julia and Catherine also joined us.). The weekend included a museum trip, a family portrait, a trip to the new Tattered Cover Book Store, and a couple of fine dinners at local eateries. Our friend Doris Sharma also baked a delicious chocolate cake, which we inhaled on Saturday night. Mom hardly looks 80 (could pass for mid 60s) and kept up quite well. I felt it was a fine tribute to everyone who has spent so much time here during the past year helping around the house and keeping my spirits up. Susan once again laid the ultimate compliment on the group after they had left: "your family is really nice, Dan." They are and we love them lots.
We plan on spending a quiet 4th of July around the house. No plans but rest and relaxation. May yours be the same. Love to all.
Dan
I always feel that I have to start with the numbers report, so here goes: last Thursday received the IGG report from the blood drawn on Monday (June 26--Cates Birthday). IGGs continue their downward trend and are now around 1415 (not sure of precise number). Down from 1605 last cycle. We are in the band of normal ranges for IGGs (700 to 1700 approx.). The goal is not to get them to zero, as IGGs are a kind of antibody and we all need them. I just produce too many of the IGGs, which then crowd out the other antibodies, which makes me vulnerable to other diseases. The mechanism that is producing the IGGs is the myeloma. The excess antibodies also attack the bone as they multiply. I still probably have myeloma (they haven't done the definitive bone marrow biopsy for many months--no complaints here). I get my last velcadel/steroid infusion on Thursday, then 2 weeks off, then Rifkin plans to devise some sort of maintenance schedule to see if lower and less frequent dosages will hold the numbers down. I am constantly reminded of the events of one year ago and marvel at how far I (we) have all come. I was literally unable to walk last 4th of July and entered the hospital on the 7th needing 4 pints of blood, recently diagnosed with 10 or 11 new vertebral compression fractures, and in terrible straits. The anniversary date of this downturn has haunted me as this holiday has drawn near, and I will be glad to get through this time, as it carries such heavy and difficult memories.
The day of the new numbers report my family also arrived for a celebration of my Mom's 80th birthday. Her birthday is actually August 30th, but we planned this a few months ago for a time we thought I would not be in the hospital, and we were right. My brothers, Mike and Tom, my sister Kathy and her husband John, and my mother and her husband Bob Walton, spent the last 4 days in Denver. Activities were a bit more subdued than the reunion of 24 high school classmates, but it was a fine time. Susan, of course, once again hosted a dinner at our house on Thursday night and we spent the evening on the patio enjoying the company and a beautiful Colorado evening (Julia and Catherine also joined us.). The weekend included a museum trip, a family portrait, a trip to the new Tattered Cover Book Store, and a couple of fine dinners at local eateries. Our friend Doris Sharma also baked a delicious chocolate cake, which we inhaled on Saturday night. Mom hardly looks 80 (could pass for mid 60s) and kept up quite well. I felt it was a fine tribute to everyone who has spent so much time here during the past year helping around the house and keeping my spirits up. Susan once again laid the ultimate compliment on the group after they had left: "your family is really nice, Dan." They are and we love them lots.
We plan on spending a quiet 4th of July around the house. No plans but rest and relaxation. May yours be the same. Love to all.
Dan
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