After a month on the maintenance dose of velcade/steroids the IGGs continue to go down. This week's results show the IGGs at 1231, down from 1338 a month ago. Maintenance isn't just maintaining, its actually driving the numbers down. I also had my first bone density test about 2 weeks ago, to determine whether I was at risk for bone fractures. The results today show my bone density to be essentially normal. My lower back is the worst of the areas tested, but its all fairly good. My orthopedic surgeon was quite surprised by the good results and believes my bone density has improved greatly since last summer when my back collapsed. I guess this test has deprived me of my claim to be fragile, when my daughters try to retaliate for the good natured tickling I like to inflict on them. Everything seems to be on track for the prostatectomy, which is scheduled for September 12th.
This week we had our "Good Bye Eileen" party, to say farewell to Susan's cousin, Eileen Stinson. Eileen treated us all to dinner at one of Denver's fine restaurants. The evening was not only filled with good food, but much laughter. We'll miss Eileen very much as she is truly the 5th member of our family. She arrived at a time when we were mired in the upsets of this disease. Her refreshing stories, big pots of sauce and meatballs, weekly chocolate chip cookies, invitations individually to each of us and together as well added to our continued belief that the worst of times can also be the best of times. Susan's Italian family, including Eileen, as well as Susan's brother Gary, regularly teaches us the meaning of generosity. Eileen's final gift to us was a plaster pig wearing a French beret. The pig is 24 inches high and has a small blackboard for notes. It now sits proudly on the end of our kitchen counter. Eileen's story of trying to get through airport security with "the pig" is hysterical. She was delayed for some time because the security guards believed the pig could be used as a weapon if allowed to be brought on the plane. So, of course, the blackboard attached to the pig now reads, "I am not a weapon."
My brother Tom spent a week with us in early August. This was his 3rd visit this summer and the more we see him, the more we want him to visit. His visit also prompted the visit of a few of his friends who were part of the reunion in early June and who live in Denver. Its nice to keep that connection. Not to be outdone by his younger brother, brother Mike will be here in October.
The days continue to bring ups and downs, but the seesaw nature of this disease seems to be evened out by the knowledge that we have come through 17 months of this struggle. I constantly compare my current situation to where I was a year ago and am so grateful for my improved health and spirits.
Love, Dan
Thursday, August 24, 2006
Tuesday, August 08, 2006
A Veteran of the Chemo Wars
Hello Everyone,
Today is Monday, which means I got my infusion of chemo and steroids--and because it's the first week of the month, I also got Zometa--bone hardening drugs. As I spent the morning in the infusion center (a large room with about 10 recliners for people to sit comfortably and "get infused"), 3 people circulated through the room. Each person displaying a look of deep concern, or worse yet, panic. I usually sit quietly and read and don't get engaged in conversation but for some reason these people wanted to talk. Each one was early in the process and understandbly scared. I felt like the veteran as I gave advice on such mundane topics as the mouthwash to use to reduce mouth sores following transplant, the ways to try to reduce fatigue, the anti nausea drugs that worked best, etc. As I walked out I realized, "I am a survivor." My step lightened.
Not much news on the numbers front. The white and red counts are stable and gradually and steadily rising over the last month or so. That is a good sign. I won't have any myeloma numbers for a couple of more weeks. I am very much looking forward to having next week off from the chemo as I find that, even though I only receive one dose a week now (compared to 2 for the past 7 months) it is still a roller coaster as I get boosted from the steroids early in the week, only to crash by the end of the week. Throw in a sleepless Monday night and the week feels like a trip to Six Flags. But Sundays are good.
Prostate surgery is scheduled for September 12th. My brother Tom tells me it will be a piece of cake given what I've already been through. His was an open surgery, i.e., an 8 inch incision below the navel. Mine will be laproscopic and thus less invasive. Although I'm not looking forward to another visit to the hospital, I am grateful my myeloma treatment has gone well enough that my doctors feel comfortable with proceeding.
Only a couple of more weeks and Julia goes back to school. Life won't be the same around here. She is such a great kid and we've really had a good time this summer. We often find ourselves watching reruns of Jon Stewart's "The Daily Show" late at night when I can't sleep. I laugh hysterically and then tell her how stupid it is. She just laughs at me and the show. Catherine sent me an email today with a lengthy piece explaining the new laws governing pension funds--said she thought it interesting. While I did find it interesting all I could think was, "Catherine, you are such a nerd!" She would agree. Susan continues with her busy life, walking her 8 miles day, keeping us all fed, engulfing us with her love and warmth, and generallykeeping the house running (and clean).
I'll check in after I have some news on the myeloma numbers in a few weeks. Until then, please know we love you all very much and that my continued improving health is due to all of your love and support.
Love Dan
Today is Monday, which means I got my infusion of chemo and steroids--and because it's the first week of the month, I also got Zometa--bone hardening drugs. As I spent the morning in the infusion center (a large room with about 10 recliners for people to sit comfortably and "get infused"), 3 people circulated through the room. Each person displaying a look of deep concern, or worse yet, panic. I usually sit quietly and read and don't get engaged in conversation but for some reason these people wanted to talk. Each one was early in the process and understandbly scared. I felt like the veteran as I gave advice on such mundane topics as the mouthwash to use to reduce mouth sores following transplant, the ways to try to reduce fatigue, the anti nausea drugs that worked best, etc. As I walked out I realized, "I am a survivor." My step lightened.
Not much news on the numbers front. The white and red counts are stable and gradually and steadily rising over the last month or so. That is a good sign. I won't have any myeloma numbers for a couple of more weeks. I am very much looking forward to having next week off from the chemo as I find that, even though I only receive one dose a week now (compared to 2 for the past 7 months) it is still a roller coaster as I get boosted from the steroids early in the week, only to crash by the end of the week. Throw in a sleepless Monday night and the week feels like a trip to Six Flags. But Sundays are good.
Prostate surgery is scheduled for September 12th. My brother Tom tells me it will be a piece of cake given what I've already been through. His was an open surgery, i.e., an 8 inch incision below the navel. Mine will be laproscopic and thus less invasive. Although I'm not looking forward to another visit to the hospital, I am grateful my myeloma treatment has gone well enough that my doctors feel comfortable with proceeding.
Only a couple of more weeks and Julia goes back to school. Life won't be the same around here. She is such a great kid and we've really had a good time this summer. We often find ourselves watching reruns of Jon Stewart's "The Daily Show" late at night when I can't sleep. I laugh hysterically and then tell her how stupid it is. She just laughs at me and the show. Catherine sent me an email today with a lengthy piece explaining the new laws governing pension funds--said she thought it interesting. While I did find it interesting all I could think was, "Catherine, you are such a nerd!" She would agree. Susan continues with her busy life, walking her 8 miles day, keeping us all fed, engulfing us with her love and warmth, and generallykeeping the house running (and clean).
I'll check in after I have some news on the myeloma numbers in a few weeks. Until then, please know we love you all very much and that my continued improving health is due to all of your love and support.
Love Dan
Thursday, July 27, 2006
A Short Vacation and Now We Hope to Maintain the Downward Trend
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
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
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
Thursday, June 29, 2006
Monday, June 12, 2006
We are the Titans, the Mighty Mighty Titans
"Titan: noun. 1. a person of enormous size, strength, power, or influence."
"We are the Titans, the mighty mighty Titans." Trinity High School's fight song, sung more than a few times this weekend.
The Titans arrived last Thursday and demonstrated the power of their titanic spirit. The day started as many others. A visit to the clinic for more chemo (tuning up for the arrival of "the boys"). But that day I was intercepted at the door by Dr. Rifkin's physician assistant, Anna, with papers in hand and a smile on her face. "I've been waiting for you," she told me as she handed me the lab results from Monday's blood draw. Myeloma numbers (IGGs) down to 1603 from 2050. YES! the combo package of velcade/steroids continues to work. Rifkin then tells me that maybe we'll try an 8th cycle after we finish this 7th cycle and then there is the possibility of a maintenance dosage. The best news I have had in almost a year; news that proved to be a very very good omen for the weekend.
The "weekend" started around 4 p.m. when the first wave of the class of 1970 arrived at the hotel. Soon another car arrived, then another. By Saturday there were 24 of us ready to see if we could make something of this reunion, which included not just the class of 1970, but also representatives from the Trinity High School Titans' classes of 1969, 1970, 1971, and 1972--and a lone representative of the rival public school (thank you Doug Henke).
I don't really know how to describe the 4 days. There were many events planned but the import of the weekend transcended the events. The feelings are so deep they defy description. On the surface this was nothing more than a bunch of guys getting together for a high school reunion. But scrape the surface and you'd discover a world I suspect many of us weren't even conscious of. Perhaps the following moments will give you a feel for what happened here in Denver this past weekend.
Thursday night Pat Engelhardt pulled out a baseball cap with "The Fuzz" printed on the front, and placed it on my head. The Fuzz being my nickname from long ago. Then, everyone else pulled out similar hats, with "the Fuzz" on each one, and placed them on their heads. Pat simply said "we're with you all the way Fuzz." These hats, and the blue multiple myeloma wristbands distributed at the same time(like the Lance Armstrong Livestrong wristbands only with "accelerate the cure" impressed into the band) were worn all weekend by everyone.
Friday night at the baseball game, a fifth inning stretch revealed a message on the jumbotron, being broadcast over the entire stadium, orchestrated by Bob Agnew, saying something to the effect of: Dan, your friends have finally arrived, we're here to support you all the way. (My memory won't do it justice, I'm sure).
Saturday night, Bob Agnew, a fellow Coloradoan, from Trinity's class of 1969, hosted a party for everyone at his home near Castle Rock. The last reunioner, Big Dave Beaudoin, arrived that night to the cheers of everyone as he drove up in his Big Rig. The party was now complete!
"Little" Dave Beaudoin laid claim to being my "longest" or "oldest" friend at the reunion, our having met in about 1956, when we were only 4 years old. Dave Willer made the same claim. Eleven of the 34 guys who graduated with me in 8th grade from St. Patrick's grade school attended this event!
Sunday afternoon we just hung around my house, telling stories. It could have been a scene from 38 years ago, taking place at any one of our parents' houses. No pretenses, no egos, just hanging out and enjoying each other's company.
As the last goodbyes were said on Sunday night I was told by each of them, "I love you, Fuzzy. You know I'm just a phone call away." "I love you" was certainly not in the vocabulary of this group of high school jocks, yet those words seemed so natural, so worthy of being spoken this weekend. A promise was extracted from me by Dick Radant that we would see each other at our 40th reunion. The same promise I made him make in 2000, after he told me of his own multi year struggle with a nasty cancer.
A few overriding impressions: Despite our apparent differences in the directions our lives have gone in the past 35 years, there was complete and absolute acceptance of everyone by everyone. We genuinely value each other as important people in our lives, then and now. One friend commented that despite the size of this group of friends, never was a cross word spoken to each other, other than in gest, and never was a fist raised in anger. An amazing feat given all the testosterone that was flying around this group in the late 1960s. We have always liked and cared for each other, and always will.
The fact that 23 people traveled from Canada, Minnesota, California, Texas, Washington, Arizona, Nebraska, North Dakota and other places speaks volumes about the capacity of these guys' hearts. Make no mistake about it, these 23 open hearts marshalled enough energy to send me flying for the entire weekend. (no Doug, it was not the tequila--that is why you were flying) I truly have never had as much energy or felt as good in over a year. They catapulted me into orbit and I still feel like I'm flying through the universe.(but no Brad Sigl, I am not talking to God)--(an inside joke).
When I went into my office this afternoon, a framed picture of everyone rested on my chair; a picture taken Friday night at my law firm's reception for the group. The picture is a gift from a friend, Tony Melanakis, who shares offices with us. A permanent reminder that more than one person is watching out for me.
These are remarkable people. I continue to marvel at the whole event and my good fortune to be able to call these people my friends. As I struggled through this past year, I slowly came to realize how important family and friends are in our lives. It seems that these long time friends of mine always knew this and were just standing on the sidelines waiting for me to wake up. And in talking with everyone, it became apparent that no one has escaped the pain and struggles of growing old. Their stories, in many cases, are not much different than mine. And that's why they were here. They know what it takes to call upon that inner strength to transcend life's difficulties and arrive at a better place. And they knew they could help me do that. And they did. It is that simple.
Well, I am awake my friends. Thank you for everything. I love you all. When it comes to friendship, you are truly Titans!
P.S. And for those bloggers who knew us way back when, here are the names of the attendees: Duke Adamski, Bob Agnew, Arnie Badinger, "Big" Dave Beaudoin, "Little" Dave Beaudoin, Dewey Berger, Darrell Binek, Brian Bogner, Bill Ehli, Pat Engelhardt, Tom Filkowski, Doug Henke, Wayne Hatzenbiler, Doug Kappel, Dave Narum, Richard Radant, Jack Radant, Howie Sage, Brad Sigl, Bob Tescher, Jim Weiler, Mike Weir, Dave Willer, and "the Fuzz".
Wednesday, May 31, 2006
No News Is Good News
I was reminded today that people (that would be you) still check my blog regularly and there hasn't been a posting in some time. So here's the latest on "the numbers", as well as "my life". I last saw Rifkin 2 weeks ago. He was mildly encouraged by the last drop in numbers (from 2580 to 2030) and as a result, approved a 7th cycle of velcade with steroids. That starts on Monday, after a much needed 2 week break from the chemo. It also feels a long way from the depths of the sadness when I was told, after 4 cycles, that I wouldn't qualify for continued participation in the study. Yes, the roller coaster ride continues. Anyway, labs will be drawn on Monday with results on Thursday. What's next? don't know until the results are in. But I am generally feeling good--especially when I think about where I was last summer.
The family continues to take care of me--not just Susan, Catherine and Julia, but also my mother, brothers and sister. As you know my mother was here in April when Susan was in Medjagorie (sp?). Tom was here for the Memorial Day weekend and, as is our practice, we put him to work. He once again reorganized the garage--after the girls moved home and deposited more "stuff" in my parking space. His last day Susan presented him with the proverbial "to do list", which he completed with a smile. The house keeps running thanks to everyone else.
Susan and the girls also just returned from a long week at Scotsdale, AZ, thanks to Susan's cousin Eileen, who used her frequent flier miles or customer points, or something like that, to book a room at a local spa for the "girls". While initially it was to be a 4 day stay just for Susan and Catherine, as a graduation present for Catherine, Eileen later decided that she and Julia needed to join them. So, Catherine and Susan spent Monday through Friday there, and Eileen and Julia spent Thursday through Monday there--overlapping on the Thursday. They all look appropriately bronzed and relaxed. Eileen's generosity has us all overwhelmed. We are truly enjoying her being in Denver on assignment and will certainly miss her when she finishes her job here (I continue to receive a weekly package of home made cookies, which I'll also miss) But, what a nice gift from Eileen for the three ladies who took such good care of me this past year.
Next week more than 20 of my high school friends (24 is the current number) will be descending upon Denver for a 36th reunion of the class of 1970. This event was the brainchild of a couple of friends (as I understand it that would be Brian Bogner, Jim Weiler, and Wayne Hutsenbiler) as a way to boost my spirits as well as to just get together after too many years. The event has exploded into a guys weekend out, with golf, ROckies baseball, a reception at my law firm for "beer and brats" and lots of story telling.(No, I'm not playing golf but think I can manage driving the beer cart) The emails in preparation for this event have been numerous and hilarious. Initially I thought there would be 6 or 7 guys, but it has grown into this "can't be missed" weekend. I continue to marvel at the number of friends who are coming to Denver and count this, among so many other things, as one of the disguised blessings of this nasty disease. I will let you know if Denver survives the weekend onslaught of North Dakotans.
So that's the news. If this is sounding more like a normal life, then here's to it. It is actually beginning to feel that way too. While I still have my health issues, I have come to appreciate that while this is not a life that anyone would script for themselves, it is my life and thanks to all those who are in my life, it still brings me much joy and happiness and for that and all those who make it so, I am thankful. Love, Dan
The family continues to take care of me--not just Susan, Catherine and Julia, but also my mother, brothers and sister. As you know my mother was here in April when Susan was in Medjagorie (sp?). Tom was here for the Memorial Day weekend and, as is our practice, we put him to work. He once again reorganized the garage--after the girls moved home and deposited more "stuff" in my parking space. His last day Susan presented him with the proverbial "to do list", which he completed with a smile. The house keeps running thanks to everyone else.
Susan and the girls also just returned from a long week at Scotsdale, AZ, thanks to Susan's cousin Eileen, who used her frequent flier miles or customer points, or something like that, to book a room at a local spa for the "girls". While initially it was to be a 4 day stay just for Susan and Catherine, as a graduation present for Catherine, Eileen later decided that she and Julia needed to join them. So, Catherine and Susan spent Monday through Friday there, and Eileen and Julia spent Thursday through Monday there--overlapping on the Thursday. They all look appropriately bronzed and relaxed. Eileen's generosity has us all overwhelmed. We are truly enjoying her being in Denver on assignment and will certainly miss her when she finishes her job here (I continue to receive a weekly package of home made cookies, which I'll also miss) But, what a nice gift from Eileen for the three ladies who took such good care of me this past year.
Next week more than 20 of my high school friends (24 is the current number) will be descending upon Denver for a 36th reunion of the class of 1970. This event was the brainchild of a couple of friends (as I understand it that would be Brian Bogner, Jim Weiler, and Wayne Hutsenbiler) as a way to boost my spirits as well as to just get together after too many years. The event has exploded into a guys weekend out, with golf, ROckies baseball, a reception at my law firm for "beer and brats" and lots of story telling.(No, I'm not playing golf but think I can manage driving the beer cart) The emails in preparation for this event have been numerous and hilarious. Initially I thought there would be 6 or 7 guys, but it has grown into this "can't be missed" weekend. I continue to marvel at the number of friends who are coming to Denver and count this, among so many other things, as one of the disguised blessings of this nasty disease. I will let you know if Denver survives the weekend onslaught of North Dakotans.
So that's the news. If this is sounding more like a normal life, then here's to it. It is actually beginning to feel that way too. While I still have my health issues, I have come to appreciate that while this is not a life that anyone would script for themselves, it is my life and thanks to all those who are in my life, it still brings me much joy and happiness and for that and all those who make it so, I am thankful. Love, Dan
Friday, May 12, 2006
Mysteries Not To Be Solved
Medjagorje, Medicine, Meditation, Messages (spiritual and otherwise) From Many Many Family and Friends. Who knows where the magic lies? Thursday morning "numbers" report shows drop of 550 points in the "enemy" IGGs--from 2580 to 2030. The lowest those numbers have been in 11 months. More movement in the last 3 weeks than in the last 3 months! The rollercoaster ride continues, but this time we are not plummeting. No upset stomach. Hope does not seem futile despite its taking me out of the present. This hope makes the present pleasant. I feel good, energy continues to increase, whether due to decrease in cancer levels or increase in steroids is irrelevant to me. The final test comes in 3 weeks with the bone marrow biopsy--to get definite measurement on the cancer levels and determine, once again, a course of action for the future.
While this is my fight, many times I have thought that I have small influence on what ultimately happens with this nastiness inside of me--not that such moments have lead me not to try. But at times,I really do feel like a passenger on this journey. My meditation practice describes the process as one of surrender--not giving in, but letting go, and allowing the work to be done by nature, the universe, spirit, energy, God, or whatever you call that force that keeps us alive in this place we live. Well, the work is being done and it is being done with the help, push, force, prayer, and whatever other words might describe the intentions of all of you who have worked so hard to influence the outcome of the battle.
So once again I humbly thank all. I am still processing Susan's journey across the seas for me. I don't believe much in coincidences so the turn of the numbers coinciding with her Medjagorje visit are not lost on me. Then again, I am a bit of a scientist and the change in medication was recent. But don't forget that papal blessing, or all the masses being said for me around the world, or my daily meditation practice, or the many many friends who visit, write, email and blog--just to see how things are going, and there was that visit from my mother, and there is all that food that is still being delivered--prepared with love and care. Yes, everyone's efforts are continuing to keep my eyes alive with the enjoyment of life and my body is responding. No further explanations are needed, not even for this logic based, left brained lawyer. Keep up the good work everyone. Love, Dan
P.S. We saw Catherine graduate yesterday. She was in the top 2% of her Business School class--and she actually has a job. We are so proud of her.
While this is my fight, many times I have thought that I have small influence on what ultimately happens with this nastiness inside of me--not that such moments have lead me not to try. But at times,I really do feel like a passenger on this journey. My meditation practice describes the process as one of surrender--not giving in, but letting go, and allowing the work to be done by nature, the universe, spirit, energy, God, or whatever you call that force that keeps us alive in this place we live. Well, the work is being done and it is being done with the help, push, force, prayer, and whatever other words might describe the intentions of all of you who have worked so hard to influence the outcome of the battle.
So once again I humbly thank all. I am still processing Susan's journey across the seas for me. I don't believe much in coincidences so the turn of the numbers coinciding with her Medjagorje visit are not lost on me. Then again, I am a bit of a scientist and the change in medication was recent. But don't forget that papal blessing, or all the masses being said for me around the world, or my daily meditation practice, or the many many friends who visit, write, email and blog--just to see how things are going, and there was that visit from my mother, and there is all that food that is still being delivered--prepared with love and care. Yes, everyone's efforts are continuing to keep my eyes alive with the enjoyment of life and my body is responding. No further explanations are needed, not even for this logic based, left brained lawyer. Keep up the good work everyone. Love, Dan
P.S. We saw Catherine graduate yesterday. She was in the top 2% of her Business School class--and she actually has a job. We are so proud of her.
Monday, May 08, 2006
Susan's Message From Medjugorje
Dear Family and Friends,
I am a weary traveller just back from Eastern Europe. It took 26 hours to get home and three airplanes. It was grueling but I am safe and full of thoughts and remembrances of an incredible journey, a once in a lifetime experience that I never would have guessed I would make.
Medjugorje is situated in Bosnia - Herzegovina and is truly in the midst of some of the most beautiful country I have ever seen. It is a green, lush valley, surrounded by high rocky hills. The people are war weary and it is obvious they have been through alot. Yet they are kind, welcoming and always smiling. These are Croats surrounded by Serbs. The ethnic cleansing that was inflicted on them has left each family scarred and bereft at the loss of loved ones. That is why it is a gift for them to have the Blessed Mother always present in their community through her apparitions. You can feel the spirituality of the place and they have opened their hearts and homes to pilgrims from all over the world. Pilgrims of all kinds: young, very old, every ethnic group, religious, and clergy, all are there to profess their faith, or to be called back to their faith, or to pray for someone or for themselves. It it certainly not an experience I had ever expected to have, and yet, it is the most perfect gift I could have been given.
I told my family that I prayed more in these 10 days then I have over the last 30 years. I travelled with a remarkable group of believers who looked out for me, felt the pain I carried, and supported my desire to help Dan. We were fortunate to have a Benedictine monk, Benedict, travel with us. He is the brother of Jim Neenan who travelled there with his wife Nancy, son Chris and his pregnant and beautiful wife, Leah. I cannot even begin to tell you the comfort of having someone like Benedict with us throughout, leading us in prayers, saying Holy Mass and blessing us and every religious article we purchased. In addition to the Neenans I was also kept company by our long time friends, John and Jennie Amato.
It will take much time for me to sort out all I saw, experienced and wrestled with. I felt like I had returned to the Church of my youth and there was great comfort in that. I would always joke to Dan - "once a Catholic, always a Catholic" - but I knew deep down it was not a joke at all. I was always a Catholic and now I have been given the blessings of the sacraments and a group of people who live their beliefs and support one another in the kindest and loveliest of ways.
I have seen hundreds of people lined up for Confession, groups of people, all walking with their Rosary in prayer, a church filled to standing room only from 7 in the morning till 10 at night. Pilgrims were hiking up Cross Mountain in bare feet over huge, sharp rocks, praying the stations of the Cross and meditating on the Crucifixation with pain and sadness in their faces. I have seen old people going up those hills and mountains and I have meditated on the power of faith to keep us going literally as well as figuratively. I have seen Visionaries and listened to their words, tried to read their faces and feel what was in their souls. I have heard birds sing all night, and then be magically silenced as soon as one of the Visionaries experienced the presence of the Blessed Mother, saw the sun spin and witnessed a bronze statue of Christ drop water from his leg (as it has inexplicitly done for years) as people placed their religious objects on the spot and then kissed the object reverently. There are stories too numerous to relate, that would indeed fill a small book, but a book nontheless.
I will say I was in a place that is wonderous, devotional, pulsating with a spiritual consciousness, and at the same time difficult, even very difficult, physically, emotionally and spiritually. I found the life of a Pilgrim to be a daily challenge in comforts and belief. But at the end of the journey, the challenges were forgotton and the faith remained. I believe in my heart and mind that I was in a sacred, holy place that is filled with the presence of the Blessed Mother.
With that belief I left Dan's cancer at Mary's feet. I climbed up Apparition Hill where Our Lady first appeared to the children 25 years ago. There one finds her statue and I carried Dan's written intention with me and left it there for her to do as she decides. I have heard requests ring out twice in grand Churches; requests spoken by my friends on the trip, asking for Dan's health , once in a packed and beautiful service at St. James in Medjugorje, the other in Dubrovnik, in an old and inspiring place where Father Benedict said Mass for our small group of wear travellers at the end of our journey. Both times I said Dan is in good hands.
So I will remember, and try to understand, and accept on faith those things that my mind is incapable of comprehending. And most of all, I thank Mary for calling me to such a place. It is hard to believe it was only last October when I was first made aware of Mary's appearances at Medjugorje, and her statute visited our house, and now I have visited the place where she first appeared and stood on Apparition Hill. We are all on an amazing journey.
Love, Susan
I am a weary traveller just back from Eastern Europe. It took 26 hours to get home and three airplanes. It was grueling but I am safe and full of thoughts and remembrances of an incredible journey, a once in a lifetime experience that I never would have guessed I would make.
Medjugorje is situated in Bosnia - Herzegovina and is truly in the midst of some of the most beautiful country I have ever seen. It is a green, lush valley, surrounded by high rocky hills. The people are war weary and it is obvious they have been through alot. Yet they are kind, welcoming and always smiling. These are Croats surrounded by Serbs. The ethnic cleansing that was inflicted on them has left each family scarred and bereft at the loss of loved ones. That is why it is a gift for them to have the Blessed Mother always present in their community through her apparitions. You can feel the spirituality of the place and they have opened their hearts and homes to pilgrims from all over the world. Pilgrims of all kinds: young, very old, every ethnic group, religious, and clergy, all are there to profess their faith, or to be called back to their faith, or to pray for someone or for themselves. It it certainly not an experience I had ever expected to have, and yet, it is the most perfect gift I could have been given.
I told my family that I prayed more in these 10 days then I have over the last 30 years. I travelled with a remarkable group of believers who looked out for me, felt the pain I carried, and supported my desire to help Dan. We were fortunate to have a Benedictine monk, Benedict, travel with us. He is the brother of Jim Neenan who travelled there with his wife Nancy, son Chris and his pregnant and beautiful wife, Leah. I cannot even begin to tell you the comfort of having someone like Benedict with us throughout, leading us in prayers, saying Holy Mass and blessing us and every religious article we purchased. In addition to the Neenans I was also kept company by our long time friends, John and Jennie Amato.
It will take much time for me to sort out all I saw, experienced and wrestled with. I felt like I had returned to the Church of my youth and there was great comfort in that. I would always joke to Dan - "once a Catholic, always a Catholic" - but I knew deep down it was not a joke at all. I was always a Catholic and now I have been given the blessings of the sacraments and a group of people who live their beliefs and support one another in the kindest and loveliest of ways.
I have seen hundreds of people lined up for Confession, groups of people, all walking with their Rosary in prayer, a church filled to standing room only from 7 in the morning till 10 at night. Pilgrims were hiking up Cross Mountain in bare feet over huge, sharp rocks, praying the stations of the Cross and meditating on the Crucifixation with pain and sadness in their faces. I have seen old people going up those hills and mountains and I have meditated on the power of faith to keep us going literally as well as figuratively. I have seen Visionaries and listened to their words, tried to read their faces and feel what was in their souls. I have heard birds sing all night, and then be magically silenced as soon as one of the Visionaries experienced the presence of the Blessed Mother, saw the sun spin and witnessed a bronze statue of Christ drop water from his leg (as it has inexplicitly done for years) as people placed their religious objects on the spot and then kissed the object reverently. There are stories too numerous to relate, that would indeed fill a small book, but a book nontheless.
I will say I was in a place that is wonderous, devotional, pulsating with a spiritual consciousness, and at the same time difficult, even very difficult, physically, emotionally and spiritually. I found the life of a Pilgrim to be a daily challenge in comforts and belief. But at the end of the journey, the challenges were forgotton and the faith remained. I believe in my heart and mind that I was in a sacred, holy place that is filled with the presence of the Blessed Mother.
With that belief I left Dan's cancer at Mary's feet. I climbed up Apparition Hill where Our Lady first appeared to the children 25 years ago. There one finds her statue and I carried Dan's written intention with me and left it there for her to do as she decides. I have heard requests ring out twice in grand Churches; requests spoken by my friends on the trip, asking for Dan's health , once in a packed and beautiful service at St. James in Medjugorje, the other in Dubrovnik, in an old and inspiring place where Father Benedict said Mass for our small group of wear travellers at the end of our journey. Both times I said Dan is in good hands.
So I will remember, and try to understand, and accept on faith those things that my mind is incapable of comprehending. And most of all, I thank Mary for calling me to such a place. It is hard to believe it was only last October when I was first made aware of Mary's appearances at Medjugorje, and her statute visited our house, and now I have visited the place where she first appeared and stood on Apparition Hill. We are all on an amazing journey.
Love, Susan
Thursday, April 27, 2006
A Journey of the Heart
Susan left this morning for Medjugorje. As I think we have explained previously, this is the holy site in Bosnia Herzogovina where there have been innumerable appearances by the Blessed Mother Mary. I said goodbye as she climbed into our friend, Nettie's, car this morning and headed off to the airport. I turned and drove to the clinic for my chemo. The two hour clinic visit gave me much time for reflection. This little bundle of energy we know as Susan is tromping off to Eastern Europe for reasons she can't really articulate. All she knows is she has been called. That's all she can explain. This much I know--when it comes to matters of the heart, Susan's compass has always been 100% accurate.
From my perspective her journey for me, for her, for us and for our family is but another humbling event of an incredible year. She is packing herself halfway across the world to deposit my disease at the feet of Mary and ask for my healing. She doesn't profess to know how this can occur, only that it can. The more I contemplate the journey, the more I realize it really isn't about outcomes. It's not about what she asks for or what she, or anyone receives. The fact of the journey says it all.
She has been nursemaid to me for many many months and has cared for me in ways one might only expect to occur much later in our lives. All done without complaint and with a depth of love that is palpable. This cancer has not just happened to me. It has happened to us--Susan, Cates, Julia and me. And now Susan has volunteered to carry my cancer overseas and ask that I (we) be rid of it. Symbolically she is carrying my blue wrist bracelet purchased from the Multiple Myeloma Foundation and intends to leave it there, symbolizing the depositing of my cancer for Mary to take care of. She also carries my meditation beads to absorb the energy, blessings, and spirit that pervades this holy place, so they can be returned to me fully blessed.
And yet, this is not really about any of that symbolism or what Susan might see, feel, or experience while in Medjugorje. Susan's intentions and her willingness to travel to Bosnia to ask for healing is more than enough, in itself. I am humbled that someone would venture so far to ask so much for me. I can almost feel her intentions as I sit in this quiet house. She has, of course, left me dinner in the refrigerator complete with instructions for preparation. She has filled the freezer with food for my mother's visit while she is gone. And she is no doubt thinking of me, praying for me, and asking for my healing as she flies across the Atlantic. The care I have received from this young woman I fell in love with so many years ago is beyond description. Her heart is bigger than anyone's I have known and I have often exclaimed that I am so fortunate to have fallen in love with and been able to marry the nicest person I've ever met.
My studies in meditation have taught me that spiritual growth and healing are as much about intention as they are about action. The deeper the wish to grow or heal, the greater the growth or healing will be, especially when those intentions are accompanied by action. Right now a woman full of great energy is flying through the universe heading toward Medjugorje with a deep intention to heal her husband and her family. A greater love I could not ask for or receive. Please say a prayer tonight for my Susan. Godspeed my love. Dan
From my perspective her journey for me, for her, for us and for our family is but another humbling event of an incredible year. She is packing herself halfway across the world to deposit my disease at the feet of Mary and ask for my healing. She doesn't profess to know how this can occur, only that it can. The more I contemplate the journey, the more I realize it really isn't about outcomes. It's not about what she asks for or what she, or anyone receives. The fact of the journey says it all.
She has been nursemaid to me for many many months and has cared for me in ways one might only expect to occur much later in our lives. All done without complaint and with a depth of love that is palpable. This cancer has not just happened to me. It has happened to us--Susan, Cates, Julia and me. And now Susan has volunteered to carry my cancer overseas and ask that I (we) be rid of it. Symbolically she is carrying my blue wrist bracelet purchased from the Multiple Myeloma Foundation and intends to leave it there, symbolizing the depositing of my cancer for Mary to take care of. She also carries my meditation beads to absorb the energy, blessings, and spirit that pervades this holy place, so they can be returned to me fully blessed.
And yet, this is not really about any of that symbolism or what Susan might see, feel, or experience while in Medjugorje. Susan's intentions and her willingness to travel to Bosnia to ask for healing is more than enough, in itself. I am humbled that someone would venture so far to ask so much for me. I can almost feel her intentions as I sit in this quiet house. She has, of course, left me dinner in the refrigerator complete with instructions for preparation. She has filled the freezer with food for my mother's visit while she is gone. And she is no doubt thinking of me, praying for me, and asking for my healing as she flies across the Atlantic. The care I have received from this young woman I fell in love with so many years ago is beyond description. Her heart is bigger than anyone's I have known and I have often exclaimed that I am so fortunate to have fallen in love with and been able to marry the nicest person I've ever met.
My studies in meditation have taught me that spiritual growth and healing are as much about intention as they are about action. The deeper the wish to grow or heal, the greater the growth or healing will be, especially when those intentions are accompanied by action. Right now a woman full of great energy is flying through the universe heading toward Medjugorje with a deep intention to heal her husband and her family. A greater love I could not ask for or receive. Please say a prayer tonight for my Susan. Godspeed my love. Dan
Sunday, April 23, 2006
Just Checking In
Not much news, but I thought I would log on and let you know what's going on here in Denver. I'm doing quite well on the velcade/dexamethasone. The steroids make me feel better and generally lift my spirits, so that's nice, although I do feel a bit like I'm flying on these drugs. Susan, Catherine and Julia accuse me of having 'roid rage. I am more loud, aggressive, argumentative and obsessive compulsive on this drug--we had this experience one year ago on my first chemo regime (thalidomide/dexamethasone). But I also have more energy. The weather has been beautiful so I have been taking lots of bike rides as well.
Susan leaves for Medjagoria this coming Thursday--a pilgrimage to the site of many apparitions of the Blessed Mother Mary. She is doing this for me and for her and will be praying for my health. Unfortunately she has come down with a sinus infection this past week, which she is trying to get rid of before getting on the airplane.
While Susan is gone my mother will be visiting. The family is still nervous about leaving me alone. I guess that comes from those many months when I was not to be left alone. Anyway, we'll have a nice visit, although I continue to believe I don't need looking after.
Catherine graduates on May 11. She will be graduating from the University of Colorado with high distinction with a degree in Finance and International Business as well as a certificate in Leadership Training. She is already working part time for a pension consulting firm and will start full time with them in June. We are, of course, very proud of her. Our friends, Sigun and Joe, will be flying in for the ceremony, direct from Paris. Susan's brother, Gary, will also be joining us.
My brother Tom will be visiting over Memorial Day and we are already putting together the job list for him. He is always so willing to dig in and do whatever needs to be done.
And then in early June a group of my high school classmates will be visiting for a mini reunion of the class of 1970. We have about 14 people committed to the event already and are all getting excited about seeing one another--for some of us it has been 30 years since we last saw each other. I am so touched that they would all fly in to Denver for this event and can hardly contain my excitement.
As you can see, it will be a busy couple of months and it feels good to have the energy to have all these plans in the works. Despite its difficulties, life is full. More velcade/dex tomorrow and Thursday, then a week off. I'm doing well. Love, Dan
Susan leaves for Medjagoria this coming Thursday--a pilgrimage to the site of many apparitions of the Blessed Mother Mary. She is doing this for me and for her and will be praying for my health. Unfortunately she has come down with a sinus infection this past week, which she is trying to get rid of before getting on the airplane.
While Susan is gone my mother will be visiting. The family is still nervous about leaving me alone. I guess that comes from those many months when I was not to be left alone. Anyway, we'll have a nice visit, although I continue to believe I don't need looking after.
Catherine graduates on May 11. She will be graduating from the University of Colorado with high distinction with a degree in Finance and International Business as well as a certificate in Leadership Training. She is already working part time for a pension consulting firm and will start full time with them in June. We are, of course, very proud of her. Our friends, Sigun and Joe, will be flying in for the ceremony, direct from Paris. Susan's brother, Gary, will also be joining us.
My brother Tom will be visiting over Memorial Day and we are already putting together the job list for him. He is always so willing to dig in and do whatever needs to be done.
And then in early June a group of my high school classmates will be visiting for a mini reunion of the class of 1970. We have about 14 people committed to the event already and are all getting excited about seeing one another--for some of us it has been 30 years since we last saw each other. I am so touched that they would all fly in to Denver for this event and can hardly contain my excitement.
As you can see, it will be a busy couple of months and it feels good to have the energy to have all these plans in the works. Despite its difficulties, life is full. More velcade/dex tomorrow and Thursday, then a week off. I'm doing well. Love, Dan
Friday, April 14, 2006
6 More Weeks of Velcade
Yes, the visit with Rifkin took place today at 4 p.m. The numbers report: IGGs at 2586, down from 2601. Not impressive; not even deemed responsive; but not upward. The multiple myeloma continues to be stable. The skeletal survey shows no change from 6 months ago, so that is good. Kidney and liver function are OK. I was more worried about the kidney function and a sore right hip. Rifkin attributes the hip pain to arthritis, although he is going to have the xray reexamined to make sure there is no change. No, it's not the bike riding as it started before I bought the bike. Because on the nonresponsiveness, however, I do not qualify for staying on the study for 4 more cycles.
Rifkin gave me the option of continuing with the velcade for 2 more cycles or going to Revlimid. Rifkin has presented papers at national conferences showing that 15% of the people on velcade don't show a response until 6 cycles. Feeling lucky, I chose 2 more cycles of velcade, which Rifkin said he was very comfortable with. Then I asked about using it in conjunction with dexamethasone (a steroid). He agreed that would be a good idea, and he could try the combination as I will no longer be in the study. My first treatment was thalidomide with dexamethasone,and I had a good response; although that combo ultimately put me in the hospital with a myriad of problems. So, the plan is 2 more cycles of velcade, with dexamethasone given IV with each shot of velcade. I felt that I had done my homework today, asked a number of questions, received good answers, and am pleased with the plan going forward. Susan and I both were relieved. Although we would certainly loved to have received news of a big drop in the IGGs, we have had doctor appointments with much worse news. Maybe stability in the numbers is OK after all.
Rifkin was also pleased to hear of my bike riding, saying that one of the goals of treatment is to give people some quality of life during treatment. He asked about work and I told him of my continuing struggles with back pain and memory issues, such that I was not comfortable taking on client's legal matters. (energy is also unpredictable) I taught a class at DU law school a few weeks ago. It was a good "trial run" as after one hour my back was killing me and I was exhausted. So much for that. I guess I'll stick with a leisurely bike ride!
If you didn't see the pictures from Australia, check out the prior posting. Those pictures are, again, compliments of John Sadwith, executive director of Colorado Trial Lawyers. He also provided the pictures from Africa and South America. Talk about being connected! Thank you John.
So, I start the velcade/dexamethasone on Monday and will finish in 6 weeks, likely with a bone marrow biopsy to check the cancer levels. I'll keep you posted if anything interesting happens on my bike rides.
Rifkin gave me the option of continuing with the velcade for 2 more cycles or going to Revlimid. Rifkin has presented papers at national conferences showing that 15% of the people on velcade don't show a response until 6 cycles. Feeling lucky, I chose 2 more cycles of velcade, which Rifkin said he was very comfortable with. Then I asked about using it in conjunction with dexamethasone (a steroid). He agreed that would be a good idea, and he could try the combination as I will no longer be in the study. My first treatment was thalidomide with dexamethasone,and I had a good response; although that combo ultimately put me in the hospital with a myriad of problems. So, the plan is 2 more cycles of velcade, with dexamethasone given IV with each shot of velcade. I felt that I had done my homework today, asked a number of questions, received good answers, and am pleased with the plan going forward. Susan and I both were relieved. Although we would certainly loved to have received news of a big drop in the IGGs, we have had doctor appointments with much worse news. Maybe stability in the numbers is OK after all.
Rifkin was also pleased to hear of my bike riding, saying that one of the goals of treatment is to give people some quality of life during treatment. He asked about work and I told him of my continuing struggles with back pain and memory issues, such that I was not comfortable taking on client's legal matters. (energy is also unpredictable) I taught a class at DU law school a few weeks ago. It was a good "trial run" as after one hour my back was killing me and I was exhausted. So much for that. I guess I'll stick with a leisurely bike ride!
If you didn't see the pictures from Australia, check out the prior posting. Those pictures are, again, compliments of John Sadwith, executive director of Colorado Trial Lawyers. He also provided the pictures from Africa and South America. Talk about being connected! Thank you John.
So, I start the velcade/dexamethasone on Monday and will finish in 6 weeks, likely with a bone marrow biopsy to check the cancer levels. I'll keep you posted if anything interesting happens on my bike rides.
Thursday, April 13, 2006
Australia!
[Dan's comment]
Photos from Australia. We have now circled the globe and received get well wishes from every continent. Amazing, just absolutely amazing.
From: Eva Scheerlinck
Subject: Photos for Dan
Hi John
As promised, here are some photos we took for Dan yesterday at the Sydney Opera House and Sydney Harbour Bridge. The people in the photo are JoAnne Barnes, Courtney Oliver, Kyrn Stevens, Patrick McCarthy, James Fielding, Gerry Ferretter and myself.
We all enjoyed our little field trip to the harbour. We hope they bring a smile to Dan's face.
[posted for Dan by Glen]
Saturday, April 01, 2006
The Roller Coaster Turns Into a Bicycle
After those last two posts, let's lighten things up a bit, don't you agree?
Julia and I went bicycle shopping today--for me. After a cursory review of the high end bikes, we selected a low end, wide seater with upright handlebars for yours truly. NOw, buying a bicycle might not be a bit deal, unless the buyer was in a walker 7 months ago and could hardly walk up a set of stairs 4 months ago. Under those circumstances this is a BIG DEAL. I remember thinking in January that I hoped I could recover enough from the transplant to ride a bike this Spring. Well, guess what--we have arrived!
The family was so cute. First, Julia maintained a watchful eye as I took my test drive. She tried to help me off the bike, but I refused any assistance, as I knew I had to do this on my own, or I wasn't deserving of the vehicle. No spills, so I didn't have to buy the training wheels. Wouldn't that be a sight! Susan and Catherine were concerned when I said I was going to ride my new bike home from the store--a mere 2 or 3 miles. I was required to take my cell phone "just in case", and when I turned the corner at home there was Susan with her camera in hand to preserve the moment. Small steps but important nonetheless.
I got over my funk within the required 2 days and am now ready for whatever the doctor prescribes. And in the meantime, if you need to get ahold of me, call me on the cell, as I will most likely be out for a ride.
Love, Dan
Julia and I went bicycle shopping today--for me. After a cursory review of the high end bikes, we selected a low end, wide seater with upright handlebars for yours truly. NOw, buying a bicycle might not be a bit deal, unless the buyer was in a walker 7 months ago and could hardly walk up a set of stairs 4 months ago. Under those circumstances this is a BIG DEAL. I remember thinking in January that I hoped I could recover enough from the transplant to ride a bike this Spring. Well, guess what--we have arrived!
The family was so cute. First, Julia maintained a watchful eye as I took my test drive. She tried to help me off the bike, but I refused any assistance, as I knew I had to do this on my own, or I wasn't deserving of the vehicle. No spills, so I didn't have to buy the training wheels. Wouldn't that be a sight! Susan and Catherine were concerned when I said I was going to ride my new bike home from the store--a mere 2 or 3 miles. I was required to take my cell phone "just in case", and when I turned the corner at home there was Susan with her camera in hand to preserve the moment. Small steps but important nonetheless.
I got over my funk within the required 2 days and am now ready for whatever the doctor prescribes. And in the meantime, if you need to get ahold of me, call me on the cell, as I will most likely be out for a ride.
Love, Dan
Friday, March 31, 2006
Healing Images
More stream of consciousness, but bear with me. This household is exhausted from the heaviness of this struggle, as I'm sure you are, but that's what you get when you sign up to be a "blogger." No one ever accused me of being a lightweight on matters of "the meaning of life". Back in the 70's we used to have sarcastic discussions of "what is reality"; Howie's position during any of those discussions was simply stated, "Who Cares?" Well, my friend, it is obvious you care.
I was so touched by recent blog comments I began contemplating this community of support that has rallied to my aid. The thought arises from this contemplation: our bodies heal themselves when cut, we involuntarily stop bleeding and over time the cells heal the wound. This community of family and friends is a macrocosm of a single body; each of us comprising individual cells in that larger body. The image forms: my body is an individual injured cell, surrounded by healthy cells (you, my friends and family). The healthy cells rally to heal their injured cellular colleague. They press against my cell membrane, sending healing energy into my cell. My cell begins to heal, to reform into a healthy cell, just as the cells in my body are healing. The image is very strong and stays with me. I meditate last night saying a healing prayer known as the Medicine Buddha; A powerful sanskrit chant that takes me into a trance. The image of the community of healthy cells surrounding me stays with me throughout the meditation.
I awake this morning from a dream. Pope Benedict appeared to me in my dream, introduced himself, "Hello, I'm Pope Benedict", placed his hand on my forehead and blessed me. Clear as day he was standing there with his hand on my forehead. I couldn't tell you the last time I even thought about the Pope.
Just yesterday my friend Doug Kappel and I exchanged emails about whether I was a practicing Catholic. In response to his sister, Deb's, question about whether I was a practicing Catholic, I waxed on and on about my own spirituality, unbounded by Catholic dogma or practice. I am more Buddhist or Hindu than Catholic in my practices, yet there is no conflict between my spirituality and that of any other religious follower. Spirit is spirit. So what's the Pope doing appearing in my dream? PLease, do not answer that rhetorical question. I accept the ways of spiritual healing and acknowledge I know little of that world. But I understand this much: you are as important to me in this healing process as are my doctors. You are all a part of the energy of the world, whether called God, Jesus, Spirit, or Universal Consciousness, and that energy is all powerful. Thank you for sending your prayers and energy into my cells. Love, Dan
P.S. I told Doug only yesterday that I would not publicize my spiritual beliefs as I did not want the blog to become a forum for religious debate, and here I am putting it on the front burner. But what am I to do when the Pope appears to me in a dream? I truly am awed and humbled by the experience, like so many I have had in the past year.
P.S.S. I spoke with Rifkin by phone the other night about my concerns. He is such a nice doctor. He just presented a paper that demonstrates that some people don't respond to velcade until the 4th, 5th, or 6th cycle. So, even though I might not qualify for continued participation in the clinical trial, I might be able to go on the velcade for a few more cycles, if my numbers are continuing to move downward. Also, the coordinator of the clinical trial told me that insurance usually pays for the velcade. We'll have a plan on April 14th, after we meet with Rifkin (late afternoon appointment so don't expect a posting until the 15th.
I was so touched by recent blog comments I began contemplating this community of support that has rallied to my aid. The thought arises from this contemplation: our bodies heal themselves when cut, we involuntarily stop bleeding and over time the cells heal the wound. This community of family and friends is a macrocosm of a single body; each of us comprising individual cells in that larger body. The image forms: my body is an individual injured cell, surrounded by healthy cells (you, my friends and family). The healthy cells rally to heal their injured cellular colleague. They press against my cell membrane, sending healing energy into my cell. My cell begins to heal, to reform into a healthy cell, just as the cells in my body are healing. The image is very strong and stays with me. I meditate last night saying a healing prayer known as the Medicine Buddha; A powerful sanskrit chant that takes me into a trance. The image of the community of healthy cells surrounding me stays with me throughout the meditation.
I awake this morning from a dream. Pope Benedict appeared to me in my dream, introduced himself, "Hello, I'm Pope Benedict", placed his hand on my forehead and blessed me. Clear as day he was standing there with his hand on my forehead. I couldn't tell you the last time I even thought about the Pope.
Just yesterday my friend Doug Kappel and I exchanged emails about whether I was a practicing Catholic. In response to his sister, Deb's, question about whether I was a practicing Catholic, I waxed on and on about my own spirituality, unbounded by Catholic dogma or practice. I am more Buddhist or Hindu than Catholic in my practices, yet there is no conflict between my spirituality and that of any other religious follower. Spirit is spirit. So what's the Pope doing appearing in my dream? PLease, do not answer that rhetorical question. I accept the ways of spiritual healing and acknowledge I know little of that world. But I understand this much: you are as important to me in this healing process as are my doctors. You are all a part of the energy of the world, whether called God, Jesus, Spirit, or Universal Consciousness, and that energy is all powerful. Thank you for sending your prayers and energy into my cells. Love, Dan
P.S. I told Doug only yesterday that I would not publicize my spiritual beliefs as I did not want the blog to become a forum for religious debate, and here I am putting it on the front burner. But what am I to do when the Pope appears to me in a dream? I truly am awed and humbled by the experience, like so many I have had in the past year.
P.S.S. I spoke with Rifkin by phone the other night about my concerns. He is such a nice doctor. He just presented a paper that demonstrates that some people don't respond to velcade until the 4th, 5th, or 6th cycle. So, even though I might not qualify for continued participation in the clinical trial, I might be able to go on the velcade for a few more cycles, if my numbers are continuing to move downward. Also, the coordinator of the clinical trial told me that insurance usually pays for the velcade. We'll have a plan on April 14th, after we meet with Rifkin (late afternoon appointment so don't expect a posting until the 15th.
Monday, March 27, 2006
Musings of a Passenger on a Roller Coaster
I don't know how to relate this day's events other than the stream of consciousness that has plagued me all day. This posting will probably provide the clearest look into the heart of a cancer survivor struggling with his disease. It is neither optimistic nor pessimistic. It is a window into my mind this day, like so many days. It is raw and unapologetic.
We were told early on that this would be a roller coaster ride, why do I continually forget that? There is a lesson here, not to go up when the news is good, no matter how tempting, and not to go down when the news is bad. But I am human after all.
First the context: Feeling good, run into a friend last night at the Avalanche hockey game whom I haven't seen since "the diagnosis". He has heard. He cannot believe how good I look. I tell him the new drug is working.
This morning I trot off to the clinic; decline Susan's invitation to accompany me as "I will not be seeing Rifkin." Check in and get ready for the stick in the arm for the blood draw, the antinausea meds, and the velcade. Nurse says, "I see you're seeing Rifkin today."
"No, just getting the velcade as far as I know. But if he wants to stop in, I'll always be glad to talk with him." Nurse: "no, you are on his schedule so he will be seeing you."
Everything OK on the exam, but then Rifkin lays on me that I will not continue on velcade for another 3 months unless my numbers are down 25% from baseline. That translates, according to him, to a need to get the IGGs to 2100. He says my baseline is 2800--what your IGGs were when we started. "What's up with that, you told me I was at 3220 and dropped to 2800." We argue about my baseline, he punts the issue by saying, "well you haven't acheived the 25% drop even if you started at 3200." I'm not happy. and I have enough energy to get angry as opposed to sad. I start to argue, displaying signs of my old self, but I'm no match for the doctor, not on chemo, not on his turf. Whatever I sputter is unpersuasive. Besides, I don't even know why I'm arguing. Frustration, no doubt. But, no resolution of the issue, as I still have this last cycle to see where my numbers will end up. Do I dare hope for a 500 number drop on this cycle?
If I don't get to the magic 25% drop in numbers, I go on another clinical trial. THis time with Revlimid, a new drug that came out about the time velcade was approved a year ago. Rifkin is all excited about this drug; just like he was excited about velcade. He just returned from a conference last week singing the praises of Revlimid; "it's had some amazing results." Same words I heard 2 months ago about velcade. He leaves. I steam, I sulk. I can't think. I am frustrated not only because I can't think, but I can't think quickly anymore. What's the point. My brain is fried with chemo, emotion, frustration, anger. I used to be so proud of my great memory. Nothing could escape my steel trap mind. The steel trap has been cut into a sieve. Nothing stays in anymore.
Questions drown my brain, but he is already out the door and down the hall.No one ever told me of "qualifying criteria" for continued participation. I'm reminded of what I read only last night:
"The principle is simple and at first glance makes a certain sort of sense. In the case of complicated, possibly fatal and emotionally charged illness, never tell the patient more than he is likely to find out for himself, and only ever give the best-case scenario."
This from the book written by a multiple myeloma survivor of 7 years who refused all medical treatment and chemotherapy and went natural with herbs, vitamins, breathing exercises. "Living Proof" "A Medical Mutiny" by Micheal Gearin-Tosh. I understand this. So what if Rifkin had told me at the outset I need to achieve a 25% drop or no second three month cycle? I would have been fretting, just like I am now--only I would have started 2 months ago. I really believe oncologists learn to give dribs and drabs, only as needed. But truly out of compassion for their patients, as they know from experience there is only so much we can handle and then we shut down, or go into a permanent downward spiral.
Why am I reading this book, when I have chosen the opposite route? Is the herbal routine a fallback? Will I have the courage to go herbal when/if chemo fails me? Will it be too late? All I want is hope, give me good news, tell me I am making progress against this insidious cancer.
Instead, Rifkin tells me, "we've stabilized your disease." This does nothing for me. Stability is not our goal.
The Revlimid trial is called a "compassionate use" study. What is that? Sounds more like charity than science. I long for a scientifically established certain outcome. Not in this life. Not for anyone.
In the minutes before Rifkin walked in I was reading the buddhist monk, Nhich Nhat Hanh's book, "Peace is Every Step", where he says, "Hope is for the future. It cannot help us discover joy, peace, or enlightenment in the present moment....Hope can create an obstacle for you, and if you dwell in the energy of hope, you will not bring yourself back entirely into the present moment." What am I to think? I want to hope. Hope springs eternal. Am I creating obstacles to my enjoying my life by hoping for a respite from this nastiness? No doubt. Seems to be the human condition.
I no longer want to be a cancer survivor, the "brave, courageous" person facing this nasty disease. I never wanted to be "an example" of how to cope with such news. I want to slip back into my anonymous life. There is no "hope" of that, unfortunately. No matter. The journey has already begun and must be completed.
Another poem crosses my mind; this one from a book my brother, Tom, sent me, "A Whole New Life" by Reynolds Price. An encouraging, uplifting, inspiration memoir of Reynolds' cancer survival story. His poem, entitled, "The Dream of Refusal" ends with this: "I will walk all night. I will not die of cancer. Nothing will make me dance in that dark."
Yes, that would describe the state of my mind and my spirit. I refuse to acknowledge the darkness and most assuredly will not "go there" in my thoughts, despite daily temptations.
So, I get my velcade today and another shot on Thursday, then the blood draw a week later to see where my IGGs are. Meeting with Rifkin on APril 14th for the blood test results and the plan of action. Two weeks off the velcade. Is that good news? Hardly seems like it anymore. THe news of no bone marrow biopsy also fails to lift my spirits. Rifkin explained that if one doesn't qualify for continued participation then, the drug is no longer given free by the manufacturer. While he could continue me with it, it would be in a non FDA approved application (off label) and thus, my insurance company might (MOST PROBABLY) fight paying for it on the basis that it is experimental. At $6,000 a week, that expense would chew me up in no time.
The roller coast has reached its zenith and is plummeting. How can one sit in an examining room and have the same sensation in one's stomach as a plummeting roller coaster? I want to throw up.
I call Susan from the parking lot, give her the abbreviated version of events and go to work. I cannot go home with my thoughts. Escape to my work--an old habit perhaps, but effective. Before I know it, it's 5 o'clock, time to go home. How time flies when...
Catherine and Susan have conspired to present me with a fabulous meal and the face of optimism. "Dad, you're entitled to your two days." Catherine says, referring to what we have all learned is the time I need to get over this kind of news. Too much bad news, too many two day recovery periods. Well, one day down, one to go. Tonight during dinner I was in the present. I was enjoying Susan and Catherine and their love for me. In this household Susan's heritage has taught us: food is love.
Cousine Eileen just dropped in, in the middle of the last sentence, with homemade chocolate chip cookies, just for me. No kidding. Food is love.
I tell myself, stay in the present, just stay in the light. Do not dance in the dark. Goodnight my friends. I am fine. I love you all. Dan
We were told early on that this would be a roller coaster ride, why do I continually forget that? There is a lesson here, not to go up when the news is good, no matter how tempting, and not to go down when the news is bad. But I am human after all.
First the context: Feeling good, run into a friend last night at the Avalanche hockey game whom I haven't seen since "the diagnosis". He has heard. He cannot believe how good I look. I tell him the new drug is working.
This morning I trot off to the clinic; decline Susan's invitation to accompany me as "I will not be seeing Rifkin." Check in and get ready for the stick in the arm for the blood draw, the antinausea meds, and the velcade. Nurse says, "I see you're seeing Rifkin today."
"No, just getting the velcade as far as I know. But if he wants to stop in, I'll always be glad to talk with him." Nurse: "no, you are on his schedule so he will be seeing you."
Everything OK on the exam, but then Rifkin lays on me that I will not continue on velcade for another 3 months unless my numbers are down 25% from baseline. That translates, according to him, to a need to get the IGGs to 2100. He says my baseline is 2800--what your IGGs were when we started. "What's up with that, you told me I was at 3220 and dropped to 2800." We argue about my baseline, he punts the issue by saying, "well you haven't acheived the 25% drop even if you started at 3200." I'm not happy. and I have enough energy to get angry as opposed to sad. I start to argue, displaying signs of my old self, but I'm no match for the doctor, not on chemo, not on his turf. Whatever I sputter is unpersuasive. Besides, I don't even know why I'm arguing. Frustration, no doubt. But, no resolution of the issue, as I still have this last cycle to see where my numbers will end up. Do I dare hope for a 500 number drop on this cycle?
If I don't get to the magic 25% drop in numbers, I go on another clinical trial. THis time with Revlimid, a new drug that came out about the time velcade was approved a year ago. Rifkin is all excited about this drug; just like he was excited about velcade. He just returned from a conference last week singing the praises of Revlimid; "it's had some amazing results." Same words I heard 2 months ago about velcade. He leaves. I steam, I sulk. I can't think. I am frustrated not only because I can't think, but I can't think quickly anymore. What's the point. My brain is fried with chemo, emotion, frustration, anger. I used to be so proud of my great memory. Nothing could escape my steel trap mind. The steel trap has been cut into a sieve. Nothing stays in anymore.
Questions drown my brain, but he is already out the door and down the hall.No one ever told me of "qualifying criteria" for continued participation. I'm reminded of what I read only last night:
"The principle is simple and at first glance makes a certain sort of sense. In the case of complicated, possibly fatal and emotionally charged illness, never tell the patient more than he is likely to find out for himself, and only ever give the best-case scenario."
This from the book written by a multiple myeloma survivor of 7 years who refused all medical treatment and chemotherapy and went natural with herbs, vitamins, breathing exercises. "Living Proof" "A Medical Mutiny" by Micheal Gearin-Tosh. I understand this. So what if Rifkin had told me at the outset I need to achieve a 25% drop or no second three month cycle? I would have been fretting, just like I am now--only I would have started 2 months ago. I really believe oncologists learn to give dribs and drabs, only as needed. But truly out of compassion for their patients, as they know from experience there is only so much we can handle and then we shut down, or go into a permanent downward spiral.
Why am I reading this book, when I have chosen the opposite route? Is the herbal routine a fallback? Will I have the courage to go herbal when/if chemo fails me? Will it be too late? All I want is hope, give me good news, tell me I am making progress against this insidious cancer.
Instead, Rifkin tells me, "we've stabilized your disease." This does nothing for me. Stability is not our goal.
The Revlimid trial is called a "compassionate use" study. What is that? Sounds more like charity than science. I long for a scientifically established certain outcome. Not in this life. Not for anyone.
In the minutes before Rifkin walked in I was reading the buddhist monk, Nhich Nhat Hanh's book, "Peace is Every Step", where he says, "Hope is for the future. It cannot help us discover joy, peace, or enlightenment in the present moment....Hope can create an obstacle for you, and if you dwell in the energy of hope, you will not bring yourself back entirely into the present moment." What am I to think? I want to hope. Hope springs eternal. Am I creating obstacles to my enjoying my life by hoping for a respite from this nastiness? No doubt. Seems to be the human condition.
I no longer want to be a cancer survivor, the "brave, courageous" person facing this nasty disease. I never wanted to be "an example" of how to cope with such news. I want to slip back into my anonymous life. There is no "hope" of that, unfortunately. No matter. The journey has already begun and must be completed.
Another poem crosses my mind; this one from a book my brother, Tom, sent me, "A Whole New Life" by Reynolds Price. An encouraging, uplifting, inspiration memoir of Reynolds' cancer survival story. His poem, entitled, "The Dream of Refusal" ends with this: "I will walk all night. I will not die of cancer. Nothing will make me dance in that dark."
Yes, that would describe the state of my mind and my spirit. I refuse to acknowledge the darkness and most assuredly will not "go there" in my thoughts, despite daily temptations.
So, I get my velcade today and another shot on Thursday, then the blood draw a week later to see where my IGGs are. Meeting with Rifkin on APril 14th for the blood test results and the plan of action. Two weeks off the velcade. Is that good news? Hardly seems like it anymore. THe news of no bone marrow biopsy also fails to lift my spirits. Rifkin explained that if one doesn't qualify for continued participation then, the drug is no longer given free by the manufacturer. While he could continue me with it, it would be in a non FDA approved application (off label) and thus, my insurance company might (MOST PROBABLY) fight paying for it on the basis that it is experimental. At $6,000 a week, that expense would chew me up in no time.
The roller coast has reached its zenith and is plummeting. How can one sit in an examining room and have the same sensation in one's stomach as a plummeting roller coaster? I want to throw up.
I call Susan from the parking lot, give her the abbreviated version of events and go to work. I cannot go home with my thoughts. Escape to my work--an old habit perhaps, but effective. Before I know it, it's 5 o'clock, time to go home. How time flies when...
Catherine and Susan have conspired to present me with a fabulous meal and the face of optimism. "Dad, you're entitled to your two days." Catherine says, referring to what we have all learned is the time I need to get over this kind of news. Too much bad news, too many two day recovery periods. Well, one day down, one to go. Tonight during dinner I was in the present. I was enjoying Susan and Catherine and their love for me. In this household Susan's heritage has taught us: food is love.
Cousine Eileen just dropped in, in the middle of the last sentence, with homemade chocolate chip cookies, just for me. No kidding. Food is love.
I tell myself, stay in the present, just stay in the light. Do not dance in the dark. Goodnight my friends. I am fine. I love you all. Dan
Thursday, March 23, 2006
Velcade Continues to Do Its Work
Yes, today is the day for the "numbers" report. Today, March 23rd, also marks the one year anniversary of my multiple myeloma diagnosis. First, the numbers: Iggs are down to 2601 from a previous 2837. So, we have moved from 3220 to 2601--more than 600 points in a little over 2 months. I am happy, relieved, encouraged, hopeful, and thankful. I know we are not "there" yet, but we are moving in the right direction and that makes all the difference in how I feel when I get out of bed each morning. My white count is also better than usual. For you numbers watchers: white count at 2.5 today, with neutrophils at 1.4. Usually those numbers plummet as soon as I start my velcade (for example, I expected the white count to be around 1.6 and neutrophils around 800.)
Contrary to what I last reported, I did not go on the herbal regime. I tried it for a couple of days, felt sick to my stomach and started to question why I would want to potentially interfere with a good drug. So I just used a concoction that is mainly pulverized rice powder. Now that the numbers have moved, I don't know whether to stay with that powder or stop it. The numbers did move down more than 200 points. But would they have moved further without its use? or less? who knows?I am waffling, so I will ask you bloggers for your thoughts--continue? or discontinue? I am most anxious to hear from our scientist friend, Molly Johnston. Have I messed up the experiment by adding too many variables? What to do now?
And the final results of the DNA testing of Tom's blood shows he is also a 100% match. That makes both my brothers acceptable donors for a stem cell transplant. Looks like that backyard tussle may have to take place after all--unless I can get into remission on the velcade. Yeh, I like that approach--no more fighting my brothers.
Now, about that 1 year anniversary. One year ago, almost to the hour, I received a call from my internist telling me that my MRI and blood work were leading to the diagnosis of multiple myeloma. He had already faxed my info to Rifkin and talked to him about my diagnosis. He had made an appointment for me with Rifkin for the next day. Susan was in Houston taking care of her brother following his back surgery and I had to call her with the news and ask her to get on a plane to be at the appointment with Rifkin. She arrived at 8 a.m. the following morning, having gotten no sleep. In the year that has passed we have received a prostate cancer diagnosis, and gone through 5 chemo regimes, 2 back surgeries, a stem cell transplant and various other hospitalizations and treatments. But, guess what? In the words of Elton John: I'm Still Standing.
I feel better these days. Better, in fact, than I have in many many months. I believe this is a good drug and it's working. Susan and Catherine know I'm feeling better because I am not as passive as I have been over the past many months. They sometimes would prefer me in a more sedated state. No, not really, just less feisty. What can I say? It's been a long time without energy. I'm still adjusting to this new found energy--still not the energy I used to have but clearly more than I've had since .....oh my god, since June. We are making progress!
And a Julia story: Julia is just completing her spring break. She and a friend spent their 10 day spring break at my cousin's, Kelly Boulger's, in Orange County, CA. Kelly and his wife, Donna, graciously offered to let Julia and her friend, Suzanne, stay with them and explore southern California. Have they lost their minds--offering to house two 18 year girls on spring break? Much to our amazement, Julia accepted his offer, and moved in with them last Thursday! She and her friend Suzanne have "hung out" with Kelly's son, Sean, for much of the week, and gotten to know the new cousins, Kelly's and Donna's other kids: Riley, Shannon, and Corinne. The cousins got along famously, Julia and Suzanne got to experience southern Cal., and Julia got to see my uncle Dabby and aunt Phyllis. Susan and I are very grateful to Kelly and Donna for their hospitality, and are appreciative of what good kids Julia and Suzanne are. Kelly reports they were no problem whatsoever. Definitely not the kind of spring break that makes the news!
Next report? I guess it will be the bone marrow biopsy that should happen in about 2 weeks. Once that report comes in I will know if I am on for another 3 month velcade regime. I hope so. Until then, much love to all. Dan
And from Susan: I have not gone to the last few visits to the cancer center feeling that queasiness in the pit of my stomach as I asked Dan if he wanted me to come along. He would kindly say, "not necessary", and I would walk or pray or wait to hear from him. Today I decided to just go along and I was so glad I did. This strong, brave, determined to get this in remission guy waited too patiently for the numbers. When he read the report I saw the relief in his body and his face. Sometimes, because he never complains and always puts the best face on everything, I forget what a huge mountain he is climbing and how much energy it takes to face the day and this terrible cancer. So I left thinking that I am blessed to be on this journey with such an extraordinary man. It is not what I would have wanted but I will accept it with as much grace as I can for I am so grateful that Dan is still here a year later, thank God.
And he walked in today with the Colorado Super Lawyers Journal. He is named a "Colorado Super Lawyer" for Plaintiff's Personal Injury. This represents the top 5% of the lawyers in Colorado, as voted on by the Colorado Bar. The girls and I are so proud of him. Way to go Dan!!!
Contrary to what I last reported, I did not go on the herbal regime. I tried it for a couple of days, felt sick to my stomach and started to question why I would want to potentially interfere with a good drug. So I just used a concoction that is mainly pulverized rice powder. Now that the numbers have moved, I don't know whether to stay with that powder or stop it. The numbers did move down more than 200 points. But would they have moved further without its use? or less? who knows?I am waffling, so I will ask you bloggers for your thoughts--continue? or discontinue? I am most anxious to hear from our scientist friend, Molly Johnston. Have I messed up the experiment by adding too many variables? What to do now?
And the final results of the DNA testing of Tom's blood shows he is also a 100% match. That makes both my brothers acceptable donors for a stem cell transplant. Looks like that backyard tussle may have to take place after all--unless I can get into remission on the velcade. Yeh, I like that approach--no more fighting my brothers.
Now, about that 1 year anniversary. One year ago, almost to the hour, I received a call from my internist telling me that my MRI and blood work were leading to the diagnosis of multiple myeloma. He had already faxed my info to Rifkin and talked to him about my diagnosis. He had made an appointment for me with Rifkin for the next day. Susan was in Houston taking care of her brother following his back surgery and I had to call her with the news and ask her to get on a plane to be at the appointment with Rifkin. She arrived at 8 a.m. the following morning, having gotten no sleep. In the year that has passed we have received a prostate cancer diagnosis, and gone through 5 chemo regimes, 2 back surgeries, a stem cell transplant and various other hospitalizations and treatments. But, guess what? In the words of Elton John: I'm Still Standing.
I feel better these days. Better, in fact, than I have in many many months. I believe this is a good drug and it's working. Susan and Catherine know I'm feeling better because I am not as passive as I have been over the past many months. They sometimes would prefer me in a more sedated state. No, not really, just less feisty. What can I say? It's been a long time without energy. I'm still adjusting to this new found energy--still not the energy I used to have but clearly more than I've had since .....oh my god, since June. We are making progress!
And a Julia story: Julia is just completing her spring break. She and a friend spent their 10 day spring break at my cousin's, Kelly Boulger's, in Orange County, CA. Kelly and his wife, Donna, graciously offered to let Julia and her friend, Suzanne, stay with them and explore southern California. Have they lost their minds--offering to house two 18 year girls on spring break? Much to our amazement, Julia accepted his offer, and moved in with them last Thursday! She and her friend Suzanne have "hung out" with Kelly's son, Sean, for much of the week, and gotten to know the new cousins, Kelly's and Donna's other kids: Riley, Shannon, and Corinne. The cousins got along famously, Julia and Suzanne got to experience southern Cal., and Julia got to see my uncle Dabby and aunt Phyllis. Susan and I are very grateful to Kelly and Donna for their hospitality, and are appreciative of what good kids Julia and Suzanne are. Kelly reports they were no problem whatsoever. Definitely not the kind of spring break that makes the news!
Next report? I guess it will be the bone marrow biopsy that should happen in about 2 weeks. Once that report comes in I will know if I am on for another 3 month velcade regime. I hope so. Until then, much love to all. Dan
And from Susan: I have not gone to the last few visits to the cancer center feeling that queasiness in the pit of my stomach as I asked Dan if he wanted me to come along. He would kindly say, "not necessary", and I would walk or pray or wait to hear from him. Today I decided to just go along and I was so glad I did. This strong, brave, determined to get this in remission guy waited too patiently for the numbers. When he read the report I saw the relief in his body and his face. Sometimes, because he never complains and always puts the best face on everything, I forget what a huge mountain he is climbing and how much energy it takes to face the day and this terrible cancer. So I left thinking that I am blessed to be on this journey with such an extraordinary man. It is not what I would have wanted but I will accept it with as much grace as I can for I am so grateful that Dan is still here a year later, thank God.
And he walked in today with the Colorado Super Lawyers Journal. He is named a "Colorado Super Lawyer" for Plaintiff's Personal Injury. This represents the top 5% of the lawyers in Colorado, as voted on by the Colorado Bar. The girls and I are so proud of him. Way to go Dan!!!
Sunday, March 12, 2006
South America
Here is a photo from Rio, in front of the great Cristo de Corcovado. [Posted for Dan by Glen]
Africa
Here are "get well" pictures from Africa. Unbelievable! Now, off to Australia. and we'll have covered the world. [Posted for Dan by Glen]
Friday, March 10, 2006
No One Is Alone
From Susan: In reading the blog last night I was struck by something Joe wrote. In Naples, he described the hummm before mass began and then the walk up to received communion, not in customary single file, but in pairs. He said no one is ever alone in Naples. That resonated. I thought about it all day. I have days sometimes when I don't want to exercise, tidy the house, cook a meal, or answer the phone. The most I can do is lie on the sofa, brain dead. I think that every now and then the enormity of the past year just numbs the senses and I shut down. Without being too psychological, I suppose I am protecting myself.
But here is what happened. Cousin Eileen dropped by on Wednesday evening and we made sauce until 10:30 pm. I planned to meet her on Thursday and having spent my hours on the sofa, decided to call and tell her I was unable to move. But the mailman, Dwight, rang the doorbell with a package and asked how "Faja" was doing. Julia had written her Dad a card earlier in the week and had addressed it with her pet name for her Dad--"Faja". Dwight, who picks up on everything, reconnected me with his inquiry as to "Faja's" health.
So I wrap myself in a beautiful coat my brother sent for no reason other than a need to once again express his generosity, and found myself singing as I walked down 2nd Ave. I ran into our neighbors, Ingrid and Byron, and spent 20 minutes chatting. I arrived at the Marriott and spent a satifying few hours talking to Eileen about home (New York) and rememberances of another life.
But back to Joe's comment. Walking home about 10:30pm, still singing, and thinking that although it has been a year, the circle remains, the bonds with our family and friends grow stronger, and I find myself happy. Will wonders never cease?!
P.S. Dan didn't have a terrible Friday and we just finished a wonderful plate of pasta with homemade sauce. All topped off with a bottle of Italian wine (Dan even had a glass).
Susan
But here is what happened. Cousin Eileen dropped by on Wednesday evening and we made sauce until 10:30 pm. I planned to meet her on Thursday and having spent my hours on the sofa, decided to call and tell her I was unable to move. But the mailman, Dwight, rang the doorbell with a package and asked how "Faja" was doing. Julia had written her Dad a card earlier in the week and had addressed it with her pet name for her Dad--"Faja". Dwight, who picks up on everything, reconnected me with his inquiry as to "Faja's" health.
So I wrap myself in a beautiful coat my brother sent for no reason other than a need to once again express his generosity, and found myself singing as I walked down 2nd Ave. I ran into our neighbors, Ingrid and Byron, and spent 20 minutes chatting. I arrived at the Marriott and spent a satifying few hours talking to Eileen about home (New York) and rememberances of another life.
But back to Joe's comment. Walking home about 10:30pm, still singing, and thinking that although it has been a year, the circle remains, the bonds with our family and friends grow stronger, and I find myself happy. Will wonders never cease?!
P.S. Dan didn't have a terrible Friday and we just finished a wonderful plate of pasta with homemade sauce. All topped off with a bottle of Italian wine (Dan even had a glass).
Susan
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