Here you go bloggers, the most recent pictures of our snowstorm. Catherine, Susan and I just finished digging out Catherine's car (Toyota 4Runner). I supervised and they shoveled. I then drove the car around the block. Julia remains stranded in Colorado Springs as the main highway between Denver and there remains closed. We are hoping to see her for Christmas.
Thursday, December 21, 2006
Wednesday, December 20, 2006
Thanksgiving Football
Here are some photos of our Thanksgiving Day football game. In addition to yours truly, other participants included Catherine, Julia, cousins Arlene and Jim Bell, and Julia's friend "Gold Mine" Bob--who works in a gold mine. Fancy that! Susan stayed home to cook! Catherine was voted most improved player for learning how to throw a perfect spiral. Julia was most surprising player--she actually knew how to throw a football. With this current blizzard, and since I have learned how to post pictures, we'll give you all a look at our snow conditions in a few days.
Wednesday, November 29, 2006
Oh, what a difference a year makes
Ah, here it is, the "numbers" report. IGG's are at 1207, a very slight 19 point rise from the previous 1188. Although a few other markers still show the presence of cancer in the blood, there is no treatment planned based on these latest numbers, primarily because the IGGs are still well within the normal range of 680 to 1680. White count is good, as are platelets. Hematocrit is low for most people, but good for me. I continue to feel better, although fatigue is still an issue, but I need fewer daily naps than before. Still some other lingering issues, but they are small compared to where we have been.
I have resumed the herbal regime that I started and then stopped in January when I went on the velcade (that does seem a long time ago, doesn't it?). I've only been doing it for about 2 weeks, so too early to know whether its effective (maybe we'll never know--if the numbers stay down, we can give credit to so many people, therapies, prayers, etc)
So life has taken on a new feel. It feels much less like the life and death struggle it was for so many months last year and into this year. Now we have 3 to 4 weeks of relative peace and then anxiety creeps in as the next appointment with Rifkin approaches. The good numbers report always brings me relief, although Susan would like for the numbers to stop drifting upward entirely. Of course, so would I, but I am a bit more accepting of the ups and downs of this experience. It will be what it will be. As time goes by I gain more and more confidence that new drug therapies and combinations of drugs will be developed which will keep me going and going and going.
This year's Thanksgiving was quite a contrast to last year's. Our friends the Richardsons invited us to their home last year and saved us from a very difficult holiday at home, as I was too sick to have company and even had to nap while at the Richardsons. This year Susan's cousin Arlene, and her husband Jim, came to Denver for the week, and we also had a few other guests, totalling 13 at our table. I was even able to prepare and stuff the bird. Susan, of course, prepared the 10 other dishes!! We even went out and "threw the old pigskin around" with Arlene and Jim. My passes were the worst, but it was great to just be out in the park in the nice Denver weather. Jim taught Catherine how to throw a perfect spiral , which was one of the highlights of the day in the park, the other being the game of tackle that Julia and Catherine engaged in.
I told Susan the other day that I felt like I was waking up from a bad acid trip. Her response? Yeh, except that you woke up shorter and fatter. Oh, what a difference a year makes! I don't get any respect.
My next appointment is just before Christmas so we won't have any numbers until after the 25th. I'll check in with you all then. Until then, Happy Holidays, Merry Christmas, Happy Hanukkah, Happy? Kwanza, and every other holiday wish you might like for the upcoming season.
Love,
Dan
I have resumed the herbal regime that I started and then stopped in January when I went on the velcade (that does seem a long time ago, doesn't it?). I've only been doing it for about 2 weeks, so too early to know whether its effective (maybe we'll never know--if the numbers stay down, we can give credit to so many people, therapies, prayers, etc)
So life has taken on a new feel. It feels much less like the life and death struggle it was for so many months last year and into this year. Now we have 3 to 4 weeks of relative peace and then anxiety creeps in as the next appointment with Rifkin approaches. The good numbers report always brings me relief, although Susan would like for the numbers to stop drifting upward entirely. Of course, so would I, but I am a bit more accepting of the ups and downs of this experience. It will be what it will be. As time goes by I gain more and more confidence that new drug therapies and combinations of drugs will be developed which will keep me going and going and going.
This year's Thanksgiving was quite a contrast to last year's. Our friends the Richardsons invited us to their home last year and saved us from a very difficult holiday at home, as I was too sick to have company and even had to nap while at the Richardsons. This year Susan's cousin Arlene, and her husband Jim, came to Denver for the week, and we also had a few other guests, totalling 13 at our table. I was even able to prepare and stuff the bird. Susan, of course, prepared the 10 other dishes!! We even went out and "threw the old pigskin around" with Arlene and Jim. My passes were the worst, but it was great to just be out in the park in the nice Denver weather. Jim taught Catherine how to throw a perfect spiral , which was one of the highlights of the day in the park, the other being the game of tackle that Julia and Catherine engaged in.
I told Susan the other day that I felt like I was waking up from a bad acid trip. Her response? Yeh, except that you woke up shorter and fatter. Oh, what a difference a year makes! I don't get any respect.
My next appointment is just before Christmas so we won't have any numbers until after the 25th. I'll check in with you all then. Until then, Happy Holidays, Merry Christmas, Happy Hanukkah, Happy? Kwanza, and every other holiday wish you might like for the upcoming season.
Love,
Dan
Sunday, October 29, 2006
Status---Stable
A brief update for you regular bloggers. The proverbial numbers were drawn this week. IGG's are up ever so slightly, from 1144 to 1188. Nothing to worry about. Dr. Rifkin explained that we may see some jumping around of the numbers and only when an upward trend is identified will we start talking about resuming treatment. He has no idea how long this plateau will continue. My brother Tom tells me that a "trend" requires three points (don't ask me where this piece of information comes from, but I will trust the Ph.D.) Anyway, Rifkin continues to be very pleased with my status, congratulated me repeatedly on getting here and will see me again in 3 weeks.
I have started swimming again (trying to lose that 50 pounds the steroids packed on my belly). I cannot express how good it feels to be coming out of the fog. I'm off all drugs, other than one antibiotic. Susan, Catherine and Julia are also enjoying having me back, although they continue to fail to appreciate my sense of humor, which you will all be glad to learn, has returned in tact. So we are enjoying this break from the roid rage, sleeplessness, and fear. We know it's probably not over but the struggle has been redefined, and for that we are grateful.
I'll update you after the next visit.
Love, Dan
I have started swimming again (trying to lose that 50 pounds the steroids packed on my belly). I cannot express how good it feels to be coming out of the fog. I'm off all drugs, other than one antibiotic. Susan, Catherine and Julia are also enjoying having me back, although they continue to fail to appreciate my sense of humor, which you will all be glad to learn, has returned in tact. So we are enjoying this break from the roid rage, sleeplessness, and fear. We know it's probably not over but the struggle has been redefined, and for that we are grateful.
I'll update you after the next visit.
Love, Dan
Thursday, October 12, 2006
A Truce Perhaps? and Healing Images Revisited
Please forgive the long post, but at times, they are warranted. Saw Dr. Rifkin today and he was elated and ecstatic. This is the first he discussed the new IGGs (1144) after 4 weeks of no chemo. Excellent. Other blood measurements which I don't understand also are good, and continuing in the right trend, although they do confirm the continued presence of Mulitple Myeloma. But Rifkin said if I were a new patient, under the new treatment protocals, I would not qualify for treatment at this time: no current bone involvement, normal IGGS, and pretty normal white and red cell count. So, he is not going to treat me either, unless and until the IGGs, or other disease markers start showing the degree of the disease is increasing. He called my current state a plateau. Of course, I had to ask whether the numbers were likely to go up. His answer, yes. But as soon as I heard it I rejected it. I have never followed the expected course here and I won't start now. May the plateau extend beyond the horizon of my life.
So, I go in every 3 weeks for a blood draw and numbers check. As long as we stay on this plateau, no velcade, no steroids. I will receive zometa (the bone hardening drug) every other month (down from once a month).
Rifkin made a comment that I greatly appreciated for implicit in it was the acknowledge of the roller coaster through fire that he has sent me through over the past 9 months. He said, "I really beat you up to get you ready for this prostate surgery, there was no other way to get those numbers down. Now you need a break." This is in reference, I believe to the 11 or 12 cycles of velcade (the last 7 or 8 with the steroid booster) I have only heard of one other patient at the clinic who got to 8 cycles. So, yes, it felt like a beating, and Susan, Catherine and Julia took a piece of it also dealing with the roid rage. Time for some healing. As I got in my car, tears flowed from my eyes. Tears of relief, joy, or however you describe how someone might react to the news that he will get a respite from the most rigorous ordeal he has faced in his lifetime.
I think of the current state of stasis in my blood as a kind of truce. My myeloma and I have come to some terms. I will live for now, and it will live in me for now. I have great respect for this disease. It has the potential to bring me to my knees in an instant. And at the same time, this disease knows I will stand up and walk, even after it throws me to the ground over and over. Whether you call it a stalemate or a truce or something else, we are coexisting for the moment.
In reflecting on the healing that has obviously occurred over the past many months, Susan reminded me of a recent article in the New York Times, Science Section, about the healing energy of friends and families. duh! yeh! where have these scientists been.
So I have first duplicated a blog posting I did in March called healing images, because it perfectly describes these phenomenom of receiving healing energy from family and friends. Then the New York Times article (parts of it) follow.
I feel I am learning something very profound here, and everyone of you is a part of it. Thank you for your lessons. My life depends on it. Keep the prayers, meditations, good thoughts, cards, letters, emails, blog notes, silent "good thoughts" and whatever else you are putting in the universe for me and my family's health and well being. We are receiving it loud and clear.
First, the previous blog posting from last March:
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.
And now portions of the New York Times article:
A dear friend has been battling cancer for a decade or more. Through a grinding mix of chemotherapy, radiation and all the other necessary indignities of oncology, he has lived on, despite dire prognoses to the contrary.
My friend was the sort of college professor students remember fondly: not just inspiring in class but taking a genuine interest in them — in their studies, their progress through life, their fears and hopes. A wide circle of former students count themselves among his lifelong friends; he and his wife have always welcomed a steady stream of visitors to their home.
Though no one could ever prove it, I suspect that one of many ingredients in his longevity has been this flow of people who love him.
Research on the link between relationships and physical health has established that people with rich personal networks — who are married, have close family and friends, are active in social and religious groups — recover more quickly from disease and live longer. But now the emerging field of social neuroscience, the study of how people’s brains entrain as they interact, adds a missing piece to that data.
The most significant finding was the discovery of “mirror neurons,” a widely dispersed class of brain cells that operate like neural WiFi. Mirror neurons track the emotional flow, movement and even intentions of the person we are with, and replicate this sensed state in our own brain by stirring in our brain the same areas active in the other person.
Mirror neurons offer a neural mechanism that explains emotional contagion, the tendency of one person to catch the feelings of another, particularly if strongly expressed. This brain-to-brain link may also account for feelings of rapport, which research finds depend in part on extremely rapid synchronization of people’s posture, vocal pacing and movements as they interact. In short, these brain cells seem to allow the interpersonal orchestration of shifts in physiology.
Such coordination of emotions, cardiovascular reactions or brain states between two people has been studied in mothers with their infants, marital partners arguing and even among people in meetings. Reviewing decades of such data, Lisa M. Diamond and Lisa G. Aspinwall, psychologists at the University of Utah, offer the infelicitous term “a mutually regulating psychobiological unit” to describe the merging of two discrete physiologies into a connected circuit. To the degree that this occurs, Dr. Diamond and Dr. Aspinwall argue, emotional closeness allows the biology of one person to influence that of the other.
John T. Cacioppo, director of the Center for Cognitive and Social Neuroscience at the University of Chicago, makes a parallel proposal: the emotional status of our main relationships has a significant impact on our overall pattern of cardiovascular and neuroendocrine activity. This radically expands the scope of biology and neuroscience from focusing on a single body or brain to looking at the interplay between two at a time. In short, my hostility bumps up your blood pressure, your nurturing love lowers mine. Potentially, we are each other’s biological enemies or allies.
What can I say my friends, but another thank you for all you have done for me and my family. This is a journey like no other and I am so grateful you are there with us.
With much love and gratitude,
Dan
So, I go in every 3 weeks for a blood draw and numbers check. As long as we stay on this plateau, no velcade, no steroids. I will receive zometa (the bone hardening drug) every other month (down from once a month).
Rifkin made a comment that I greatly appreciated for implicit in it was the acknowledge of the roller coaster through fire that he has sent me through over the past 9 months. He said, "I really beat you up to get you ready for this prostate surgery, there was no other way to get those numbers down. Now you need a break." This is in reference, I believe to the 11 or 12 cycles of velcade (the last 7 or 8 with the steroid booster) I have only heard of one other patient at the clinic who got to 8 cycles. So, yes, it felt like a beating, and Susan, Catherine and Julia took a piece of it also dealing with the roid rage. Time for some healing. As I got in my car, tears flowed from my eyes. Tears of relief, joy, or however you describe how someone might react to the news that he will get a respite from the most rigorous ordeal he has faced in his lifetime.
I think of the current state of stasis in my blood as a kind of truce. My myeloma and I have come to some terms. I will live for now, and it will live in me for now. I have great respect for this disease. It has the potential to bring me to my knees in an instant. And at the same time, this disease knows I will stand up and walk, even after it throws me to the ground over and over. Whether you call it a stalemate or a truce or something else, we are coexisting for the moment.
In reflecting on the healing that has obviously occurred over the past many months, Susan reminded me of a recent article in the New York Times, Science Section, about the healing energy of friends and families. duh! yeh! where have these scientists been.
So I have first duplicated a blog posting I did in March called healing images, because it perfectly describes these phenomenom of receiving healing energy from family and friends. Then the New York Times article (parts of it) follow.
I feel I am learning something very profound here, and everyone of you is a part of it. Thank you for your lessons. My life depends on it. Keep the prayers, meditations, good thoughts, cards, letters, emails, blog notes, silent "good thoughts" and whatever else you are putting in the universe for me and my family's health and well being. We are receiving it loud and clear.
First, the previous blog posting from last March:
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.
And now portions of the New York Times article:
A dear friend has been battling cancer for a decade or more. Through a grinding mix of chemotherapy, radiation and all the other necessary indignities of oncology, he has lived on, despite dire prognoses to the contrary.
My friend was the sort of college professor students remember fondly: not just inspiring in class but taking a genuine interest in them — in their studies, their progress through life, their fears and hopes. A wide circle of former students count themselves among his lifelong friends; he and his wife have always welcomed a steady stream of visitors to their home.
Though no one could ever prove it, I suspect that one of many ingredients in his longevity has been this flow of people who love him.
Research on the link between relationships and physical health has established that people with rich personal networks — who are married, have close family and friends, are active in social and religious groups — recover more quickly from disease and live longer. But now the emerging field of social neuroscience, the study of how people’s brains entrain as they interact, adds a missing piece to that data.
The most significant finding was the discovery of “mirror neurons,” a widely dispersed class of brain cells that operate like neural WiFi. Mirror neurons track the emotional flow, movement and even intentions of the person we are with, and replicate this sensed state in our own brain by stirring in our brain the same areas active in the other person.
Mirror neurons offer a neural mechanism that explains emotional contagion, the tendency of one person to catch the feelings of another, particularly if strongly expressed. This brain-to-brain link may also account for feelings of rapport, which research finds depend in part on extremely rapid synchronization of people’s posture, vocal pacing and movements as they interact. In short, these brain cells seem to allow the interpersonal orchestration of shifts in physiology.
Such coordination of emotions, cardiovascular reactions or brain states between two people has been studied in mothers with their infants, marital partners arguing and even among people in meetings. Reviewing decades of such data, Lisa M. Diamond and Lisa G. Aspinwall, psychologists at the University of Utah, offer the infelicitous term “a mutually regulating psychobiological unit” to describe the merging of two discrete physiologies into a connected circuit. To the degree that this occurs, Dr. Diamond and Dr. Aspinwall argue, emotional closeness allows the biology of one person to influence that of the other.
John T. Cacioppo, director of the Center for Cognitive and Social Neuroscience at the University of Chicago, makes a parallel proposal: the emotional status of our main relationships has a significant impact on our overall pattern of cardiovascular and neuroendocrine activity. This radically expands the scope of biology and neuroscience from focusing on a single body or brain to looking at the interplay between two at a time. In short, my hostility bumps up your blood pressure, your nurturing love lowers mine. Potentially, we are each other’s biological enemies or allies.
What can I say my friends, but another thank you for all you have done for me and my family. This is a journey like no other and I am so grateful you are there with us.
With much love and gratitude,
Dan
Saturday, October 07, 2006
Wednesday, October 04, 2006
IT MAY BE HARD TO BELIEVE BUT.......
Yes, it may be hard to believe, given that it took 1 year to get a response to any chemo regime, but, my numbers continue to go down, even though I haven't had chemo in 4 weeks and underwent a prostate surgery during that same 4 week period. I called in for my myeloma numbers today, from the blood draw on Monday, and my IGG's are now at 1144, down from 1231 in late August!!! Yes!!! I'll interrogate Dr. Rifkin next week when he sees me, but right now I am enjoying the progress even though I can't explain it.
Susan and I shared a bottle of wine tonight and enjoyed the good news, which was such a rarity last year. We toasted our good fortune for having so many good friends and family who cared for us during last year's struggles. May our blessings continue.
Love,
Dan
Post Script: I just heard this on a television program of all things, but liked it. Philosopher Kahlil Gibran wrote: "Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
Susan and I shared a bottle of wine tonight and enjoyed the good news, which was such a rarity last year. We toasted our good fortune for having so many good friends and family who cared for us during last year's struggles. May our blessings continue.
Love,
Dan
Post Script: I just heard this on a television program of all things, but liked it. Philosopher Kahlil Gibran wrote: "Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
Saturday, September 30, 2006
WOW!!!!
We have raised $12,750 to date thanks to all of you and many others who may not be bloggers. The Light the Night walk was a great event. We had a beautiful fall evening for the walk and about 20 walkers showed up to walk on my team. The total turnout for the walk was probably in excess of 2000 people, each walking the 2 miles with a lighted balloon. (the furthest I've walked in 2 years!) Thank you to everyone who donated and who walked. It lifted my spirits, and other survivors as well.
Inspired by Thursday night's walk, and wanting to enjoy our beautiful fall weather, I took a 2 1/2 mile walk this morning. I'm feeling quite well, despite the surgery of 2 1/2 weeks ago. My good feelings are no doubt attributable to the absence of any chemo for the past month. The absence of those drugs, and my increased energy, always awaken me to how much those drugs fatigue me. I'm not looking forward to a return to that regime and am hoping that this coming Monday's visit with Dr. Rifkin will bring news of another week off--in the interest of allowing me further time to heal.
I have heard the clamor for Julia's picture, but I can't figure out how to download it onto this site. I will forward it to Ted and ask him to send to his son, Glen, who does all our photo postings.
I will probably get some myeloma numbers later next week, and if so, I'll let you know how my numbers are after this month off from the chemo. Keep your fingers crossed!
Much love to all,
Dan
Post Script: Monday morning: Had my blood drawn for myeloma testing but no visit with the doctor and no chemo. I was advised that Rifkin will see me the end of next week, and make decisions then about when to reinstitute the chemo regime--he wants to give me ample time to heal from surgery. While Susan and I are a bit nervous about being off of chemo for almost 5 weeks, I welcomed the news, as I was really not looking forward to a return of the chemo rollercoaster.
Inspired by Thursday night's walk, and wanting to enjoy our beautiful fall weather, I took a 2 1/2 mile walk this morning. I'm feeling quite well, despite the surgery of 2 1/2 weeks ago. My good feelings are no doubt attributable to the absence of any chemo for the past month. The absence of those drugs, and my increased energy, always awaken me to how much those drugs fatigue me. I'm not looking forward to a return to that regime and am hoping that this coming Monday's visit with Dr. Rifkin will bring news of another week off--in the interest of allowing me further time to heal.
I have heard the clamor for Julia's picture, but I can't figure out how to download it onto this site. I will forward it to Ted and ask him to send to his son, Glen, who does all our photo postings.
I will probably get some myeloma numbers later next week, and if so, I'll let you know how my numbers are after this month off from the chemo. Keep your fingers crossed!
Much love to all,
Dan
Post Script: Monday morning: Had my blood drawn for myeloma testing but no visit with the doctor and no chemo. I was advised that Rifkin will see me the end of next week, and make decisions then about when to reinstitute the chemo regime--he wants to give me ample time to heal from surgery. While Susan and I are a bit nervous about being off of chemo for almost 5 weeks, I welcomed the news, as I was really not looking forward to a return of the chemo rollercoaster.
Friday, September 15, 2006
Home From Yet Another Surgery
The prostatectomy took place on Tuesday, although late in the evening due to an unexpectedly long surgery in the operating room ahead of me. Susan and Catherine were waiting for me in my room when I was wheeled in around 10 p.m. The surgery went better than expected, and although we do not yet have the final pathology report back, my surgeon seems optimistic that we got all the cancer (couched in the appropriate disclaimers we lawyers are trained to recognize). I was discharged yesterday morning and Susan and I promptly went for a short walk around the neighborhood. An activity very reminiscent of last summer's multiple hospitalizations and recoveries. One of our neighbors even asked if I had had a relapse, having noticed my slow deliberate pace. Fortunately that was not the case.
I feel surprisingly good after undergoing this 3 1/2 hour surgery. I walked close to a mile this morning and will take a shorter walk this evening. The walks tire me out but I have learned they are the best recovery mechanism available.
The Light the Night Walk is gearing up well. The response has been tremendous. Thank you to everyone who has supported me in this endeavor. I've already rasied over $6,000!!! I am so committed to this because the new drugs are what has saved my life and I know that others will be facing what I faced when I was first diagnosed. Whatever you can do is greatly appreciated.
Oh, and Julia has, in fact, now shaved her head. We have seen pictures....she is still cute. And we get to see her this weekend. She's always been one to push the boundaries so we're not surprised. She makes me smile. My brother Tom thinks it is a great display of self confidence. Yeh, that's one way to look at it. Or another is ......never mind.
I don't know when we'll start the velcade/steroids routine again, but am actually enjoying the clearheadedness I feel after almost 2 weeks without chemo. I'll probably get next week off also, then back to the weekly chemo infusion. Oh well, that's my life. Thanks for all the support through this last surgery. It feels good to have it behind me.
My surgeon just called with the path results: clear at the margins, which means it does not appear the cancer spread beyond the gland that was removed; or the hormone shots I've been getting for the past year caused it to retreat. He'll watch me for a year or so, with PSA (prostate specific antigen) tests of the blood just to make sure.
Love,
Dan
I feel surprisingly good after undergoing this 3 1/2 hour surgery. I walked close to a mile this morning and will take a shorter walk this evening. The walks tire me out but I have learned they are the best recovery mechanism available.
The Light the Night Walk is gearing up well. The response has been tremendous. Thank you to everyone who has supported me in this endeavor. I've already rasied over $6,000!!! I am so committed to this because the new drugs are what has saved my life and I know that others will be facing what I faced when I was first diagnosed. Whatever you can do is greatly appreciated.
Oh, and Julia has, in fact, now shaved her head. We have seen pictures....she is still cute. And we get to see her this weekend. She's always been one to push the boundaries so we're not surprised. She makes me smile. My brother Tom thinks it is a great display of self confidence. Yeh, that's one way to look at it. Or another is ......never mind.
I don't know when we'll start the velcade/steroids routine again, but am actually enjoying the clearheadedness I feel after almost 2 weeks without chemo. I'll probably get next week off also, then back to the weekly chemo infusion. Oh well, that's my life. Thanks for all the support through this last surgery. It feels good to have it behind me.
My surgeon just called with the path results: clear at the margins, which means it does not appear the cancer spread beyond the gland that was removed; or the hormone shots I've been getting for the past year caused it to retreat. He'll watch me for a year or so, with PSA (prostate specific antigen) tests of the blood just to make sure.
Love,
Dan
Thursday, September 07, 2006
Bloggers--Help Light the Night
Below you will find a fund raising solicitation letter for all my blogger friends. Later this month I am planning on participating in a Light the Night fund raising activity here in Denver to help raise money for research on blood cancers, such as myeloma. Cancer has touched so many of our lives and sadly, as we get older, it seems to happen more frequently. But, the good news is that we are finding more and more cures as well as discovering new drugs to prolong and enhance the lives of cancer patients.
After five failed chemotherapy regimes, including a failed stem cell transplant, this April my blood cancer levels finally started dropping after I started a new drug combination, velcade with decadron (a steroid). Velcade was approved by the FDA only about 18 months ago. Its success in clinical trials was so impressive that it was fast tracked through the approval process, so patients like me could be given a chance to live. Another drug, revlimid, was also approved around the same time and, should the velcade stop working for me, I will likely be put on a revlimid regime. Not all patients respond to these new drugs. We need more research to develop new drugs.
On Thursday, September 28 The Colorado Chapter of The Leukemia and Lymphoma Society is sponsoring a Light the Night Walk in Washington Park in Denver, to raise money for blood cancer research (leukemia, lymphoma, Hodgkins disease and myeloma). My family and I have committed to walk in the event as well as to contribute financially. I am very excited at the prospect of participating in this effort, because a little more than a year ago I could only walk a block, and that required the assistance of a walker.
I am inviting you to walk with me that evening, donate to the cause or do both. A donation of any amount will be greatly appreciated, whether it be $25, $50, $100, $250, $500 or more. You can register to walk and/or to donate by going to my web page which has been set up specifically for this purpose. Go to this site and follow the directions: http://www.active.com/donate/ltnDenver/1785_dpattersonLTN. If you would prefer not to use the credit card pledge, you can instead send checks to me, made payable to The Leukemia & Lymphoma Society. Please send any checks them to me at 145 Garfield St., Denver, CO 80206 so I can present them the night of the walk. Donations are tax deductible. For those interested in walking with my team, my team is called simply, "Dan Patterson's Team" (how unimaginative, I know!)
Thank you so much for considering this worthwhile cause.
Love, Dan
After five failed chemotherapy regimes, including a failed stem cell transplant, this April my blood cancer levels finally started dropping after I started a new drug combination, velcade with decadron (a steroid). Velcade was approved by the FDA only about 18 months ago. Its success in clinical trials was so impressive that it was fast tracked through the approval process, so patients like me could be given a chance to live. Another drug, revlimid, was also approved around the same time and, should the velcade stop working for me, I will likely be put on a revlimid regime. Not all patients respond to these new drugs. We need more research to develop new drugs.
On Thursday, September 28 The Colorado Chapter of The Leukemia and Lymphoma Society is sponsoring a Light the Night Walk in Washington Park in Denver, to raise money for blood cancer research (leukemia, lymphoma, Hodgkins disease and myeloma). My family and I have committed to walk in the event as well as to contribute financially. I am very excited at the prospect of participating in this effort, because a little more than a year ago I could only walk a block, and that required the assistance of a walker.
I am inviting you to walk with me that evening, donate to the cause or do both. A donation of any amount will be greatly appreciated, whether it be $25, $50, $100, $250, $500 or more. You can register to walk and/or to donate by going to my web page which has been set up specifically for this purpose. Go to this site and follow the directions: http://www.active.com/donate/ltnDenver/1785_dpattersonLTN. If you would prefer not to use the credit card pledge, you can instead send checks to me, made payable to The Leukemia & Lymphoma Society. Please send any checks them to me at 145 Garfield St., Denver, CO 80206 so I can present them the night of the walk. Donations are tax deductible. For those interested in walking with my team, my team is called simply, "Dan Patterson's Team" (how unimaginative, I know!)
Thank you so much for considering this worthwhile cause.
Love, Dan
Thursday, August 24, 2006
Good Numbers Help Wrap Up a Busy Summer
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
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
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
Africa
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
Thursday, March 02, 2006
Numbers Move Slightly, But in the Right Direction
I know many of you are waiting for the news of the "numbers," so here they are: IGG at 2837. Previously it was at 2853. Not much movement, but at least in the right direction. I am remarkably unphased by it. As I was sitting in the exam room, after they had drawn the blood and just waiting for the results I realized that I had no investment in the outcome. I am feeling so much better than 6 or 7 months ago and I still believe that this drug will work for me that a temporary measurement of the numbers feels close to meaningless. I have been on this roller coaster for so long (11 months) that ups and downs are a given.
I had also decided that if there was little movement in the numbers today I would start back on the herbs, so when I got home that's exactly what I did. If I'm going to be a guinea pig (clinical trial= experimental) then I will do my own little experiment. This is also motivated by the drop in the white count. The white count did not move up significantly during the week off, and today I am actually neutropenic again. At a minimum I believe quite strongly that the herbal regime will boost the white count. And the white blood cells should have some capacity to attack the cancer cells, so the more the merrier, as they say. I will stick with it until the next myeloma blood draw and report of results. So, it will be about a 10 day test. If no adverse consequences, i.e., numbers going up, then I'll stick with it, as I know an herbal treatment will likely take longer to have some effect on the cancer.
Oh, they also measured my PSA (prostate specific antigen),which is .1. That means that the hormone shot they have been giving me (along with the velcade perhaps) is keeping the prostate cancer from growing. My PSA was 7.5 last March which lead to the prostate cancer diagnosis. So that is good, as it looks like it will take some time to get this myeloma in line (or out of my system). I'm scheduled for another hormone shot in a month. Love those hot flashes! NOT! I have developed great empathy (Yes, empathy) for all you women who have gone through menopause and suffered those years of hot flashes. Well, you got nothing on me anymore, my dears. I share your tears, and your sweats.
To put this all in perspective, I overheard a conversation today with a man who needs a transplant and whose autologous (his own) stem cell transplant didn't work and whose sister was not a match, and who they had yet to come up with a match in the national donor bank. Even if they find a match, a transplant from an unrelated donor is a much more difficult prospect than from a sibling. I can count my blessings every day for my brothers' matches.
Incidentally, my mother predicted long ago that Mike would be the match. A mother's intuition is hard to beat. She also said this fall that despite everything I am going through I will be OK--she just has that feeling, she says. Her intuition always threw me. When I was in college and would leave to go visit my friends, such as Spike and Howie in Grand Forks, she always knew the day I would return, even though I wouldn't have decided until that day. I could never understand that. And now she's even agreed to host a party at her house for the bloggers. What a Mom! But then all the people I grew up with have always known that.
Now, about that decision of selecting the proper donor. I see that the "Big Fella" has yet to weigh in on the matter. In reflecting on that I think I understand why. All criteria seem to have a common element: toughness. Whether a fight in the back yard, as I suggested, a test of orneriness as suggested by Joe, a Risk game as suggested by Kathy, or either of Spike's ideas, they all have that same theme. Now, if that is the test, can the Big Fella measure up when he is now going around in drag, masquerading as Mrs. Joshwick? Muscles Mike (his self assigned nickname in high school) would be so ashamed. Perhaps he's suffering some regret about revealing so much of his feminine side in light of the macho tests being recommended. I'm sure his silence has nothing to do with the fact that he is in Steamboat Springs, Colorado skiing.
And for those of you who didn't know, Tom's reference to his blood being able to beat cancer is serious. He recently underwent surgery for prostate cancer (late Jan.) and it appears to have been a great success. He is doing very well, is back at work, and as you can see, has a bit of orneriness still in him. Way to go Tom!
Cousin Rich just called and will be here soon, so I'll sign off. I'm doing fine, the velcade will do its job and I've got my two brothers to back me up if it doesn't. I'll bring you up to date in a week or so. Love, Dan
I had also decided that if there was little movement in the numbers today I would start back on the herbs, so when I got home that's exactly what I did. If I'm going to be a guinea pig (clinical trial= experimental) then I will do my own little experiment. This is also motivated by the drop in the white count. The white count did not move up significantly during the week off, and today I am actually neutropenic again. At a minimum I believe quite strongly that the herbal regime will boost the white count. And the white blood cells should have some capacity to attack the cancer cells, so the more the merrier, as they say. I will stick with it until the next myeloma blood draw and report of results. So, it will be about a 10 day test. If no adverse consequences, i.e., numbers going up, then I'll stick with it, as I know an herbal treatment will likely take longer to have some effect on the cancer.
Oh, they also measured my PSA (prostate specific antigen),which is .1. That means that the hormone shot they have been giving me (along with the velcade perhaps) is keeping the prostate cancer from growing. My PSA was 7.5 last March which lead to the prostate cancer diagnosis. So that is good, as it looks like it will take some time to get this myeloma in line (or out of my system). I'm scheduled for another hormone shot in a month. Love those hot flashes! NOT! I have developed great empathy (Yes, empathy) for all you women who have gone through menopause and suffered those years of hot flashes. Well, you got nothing on me anymore, my dears. I share your tears, and your sweats.
To put this all in perspective, I overheard a conversation today with a man who needs a transplant and whose autologous (his own) stem cell transplant didn't work and whose sister was not a match, and who they had yet to come up with a match in the national donor bank. Even if they find a match, a transplant from an unrelated donor is a much more difficult prospect than from a sibling. I can count my blessings every day for my brothers' matches.
Incidentally, my mother predicted long ago that Mike would be the match. A mother's intuition is hard to beat. She also said this fall that despite everything I am going through I will be OK--she just has that feeling, she says. Her intuition always threw me. When I was in college and would leave to go visit my friends, such as Spike and Howie in Grand Forks, she always knew the day I would return, even though I wouldn't have decided until that day. I could never understand that. And now she's even agreed to host a party at her house for the bloggers. What a Mom! But then all the people I grew up with have always known that.
Now, about that decision of selecting the proper donor. I see that the "Big Fella" has yet to weigh in on the matter. In reflecting on that I think I understand why. All criteria seem to have a common element: toughness. Whether a fight in the back yard, as I suggested, a test of orneriness as suggested by Joe, a Risk game as suggested by Kathy, or either of Spike's ideas, they all have that same theme. Now, if that is the test, can the Big Fella measure up when he is now going around in drag, masquerading as Mrs. Joshwick? Muscles Mike (his self assigned nickname in high school) would be so ashamed. Perhaps he's suffering some regret about revealing so much of his feminine side in light of the macho tests being recommended. I'm sure his silence has nothing to do with the fact that he is in Steamboat Springs, Colorado skiing.
And for those of you who didn't know, Tom's reference to his blood being able to beat cancer is serious. He recently underwent surgery for prostate cancer (late Jan.) and it appears to have been a great success. He is doing very well, is back at work, and as you can see, has a bit of orneriness still in him. Way to go Tom!
Cousin Rich just called and will be here soon, so I'll sign off. I'm doing fine, the velcade will do its job and I've got my two brothers to back me up if it doesn't. I'll bring you up to date in a week or so. Love, Dan
Monday, February 27, 2006
It's a Match, and Other Happenings
As I mentioned in an earlier post, my brothers and sister were requested to have blood drawn to see if their blood matched mine, for a possible transplant (called a mini allogenaic transplant). They look at 10 separate antigens. I think it's called HLA testing. Anyway, they have all been subjected to the needle in the arm and had blood sent to the lab for testing. The testing involves 2 steps--a blood serology test and, if that matches, then DNA matching. There is a 25% chance that a sibling will match. If the serology matches, then the odds are 95% in favor of a DNA match. So here's the news: Mike (aka "The Big Fella" or "Mrs. Joshwick" on the blog) is a complete match on both serology and DNA. Tom (aka "Mr. Pete", and apparently now also known as "T-Bone" in Spokane) is a serology match and we are awaiting the DNA testing. They decided not to complete testing of my sister Kathy's blood, after getting Mike's results back, as apparently a woman who has had kids (Kathy has 3) develops antibodies that make the transplant more difficult for the recipient, even if the antigens match. So, in the event I will need another transplant to bring this myeloma under control, I have a match with Mike and also probably with Tom (will know in about 10 days). So here are the questions for you bloggers: For those of you who know Mike, "Is the world ready for 2 Big Fellas?" Should I have them go out into the back yard and take the blood donation from the one who survives? What testing criteria do you suggest to assist me in this very difficult decision? As I told each of them as I was saying goodbye on the phone today, "You take care of yourself, your life isn't just about you anymore!" All joking aside, I am overjoyed that if need be, I have a sibling blood donor to get me through the next transplant.
I had blood drawn today for myeloma testing, but won't know the results until Thursday. I feel quite good after this past week off. I think this velcade is a good drug. I got velcade (I'm starting my 3rd cycle) and zometa today, along with an antinausea drug.
And our abundance of friends continues. This weekend brought more of the same parade of friends through our house. We had such a good time. Both Catherine and Julia were home, which made it all the more fun. Saturday morning our doors opened at around 10 a.m. and Gail and her son Paul arrived. I student taught with Gail (she was my supervising teacher) many years ago (pre law school) and we have remained close friends. Gail is a techno whiz and has been helping us with various technical issues around the house, like DVD's and headphones, etc. Paul made me a "chain" of colored links, to count they days for my release from the hospital after my transplant. Soon after Gail and Paul arrived, Jim and Nancy Neenan showed up just to check in on us. They are the couple who were responsible for the statue of Mary coming to our house a few months ago. While they were here, our friend Devraj dropped by. Soon after that Kathryn McNamee, the principal at our girls' high school came by to go to lunch with Susan. Then Gail's daughter, Molly, and her fiance' Dan stopped in. Molly is getting married this coming summer and Catherine will be her maid of honor. Molly works just up the street in the lab at National Jewish Hospital and has been a great resource for us biologically challenged individuals. Jeff Hammerberg then stopped in, for his 2nd visit of the week, bringing a bouquet of flowers, as he so often does. Jeff had been by earlier in the week with his mother, Dollie, and his brother, Jason, both of whom were here visiting from Minnesota. I should note that I was lounging around in my pajamas when Gail and Paul arrived and I finally had to excuse myself at 1:30 to get dressed before I left for my meditation class. I got home at 6 p.m. and our friends, the Richardsons, arrived at 7 for dinner. Yes, they are still our friends, even after surviving an evening on the town with The Big Fella. (see the posting entitled, "Velcade--Second Cycle Begins"). Chris and Lenie Richardson are going to Italy this summer for their 25th wedding anniversary and we spent the evening talking about all the great places to see, the best restaurants, etc. (along with Julia and Catherine--who spent a semester in Florence). We also had to drink some Italian wine to capture the moment--yes I still imbibe on that week off. Sunday was relatively calm, with only one couple--Kevin and Mary Beall visiting us. Most amazing about these visitors is that (with the exception of the lunch and dinner guests) they were all "drop ins". We are so tickled that our friends are that comfortable that they just drop in to see us. That is usually such a rare occurrence in larger cities, but not in this household. And we are comfortable enough that I just lounge around in my p.j.'s. It is so much fun.
We have a couple of out of town visitors coming in this week. Tim Boulger, one of the cousins from southern California, will be here on Wednesday and Rich Boulger, who grew up with us in North Dakota, will be here on Thursday (for his second visit). I am looking forward to seeing both of them and catching up on all the family gossip.
Despite all the struggles and worries, life feels rich and full. We so enjoy all of our visitors and look forward to the weekends when we know our friends will be dropping in for a visit. I think our daughters are of a similar opinion, as they certainly like to come home for the weekends. All they can say about it is, "This is crazy." Yes, it is. And may it continue. Love, Dan
I had blood drawn today for myeloma testing, but won't know the results until Thursday. I feel quite good after this past week off. I think this velcade is a good drug. I got velcade (I'm starting my 3rd cycle) and zometa today, along with an antinausea drug.
And our abundance of friends continues. This weekend brought more of the same parade of friends through our house. We had such a good time. Both Catherine and Julia were home, which made it all the more fun. Saturday morning our doors opened at around 10 a.m. and Gail and her son Paul arrived. I student taught with Gail (she was my supervising teacher) many years ago (pre law school) and we have remained close friends. Gail is a techno whiz and has been helping us with various technical issues around the house, like DVD's and headphones, etc. Paul made me a "chain" of colored links, to count they days for my release from the hospital after my transplant. Soon after Gail and Paul arrived, Jim and Nancy Neenan showed up just to check in on us. They are the couple who were responsible for the statue of Mary coming to our house a few months ago. While they were here, our friend Devraj dropped by. Soon after that Kathryn McNamee, the principal at our girls' high school came by to go to lunch with Susan. Then Gail's daughter, Molly, and her fiance' Dan stopped in. Molly is getting married this coming summer and Catherine will be her maid of honor. Molly works just up the street in the lab at National Jewish Hospital and has been a great resource for us biologically challenged individuals. Jeff Hammerberg then stopped in, for his 2nd visit of the week, bringing a bouquet of flowers, as he so often does. Jeff had been by earlier in the week with his mother, Dollie, and his brother, Jason, both of whom were here visiting from Minnesota. I should note that I was lounging around in my pajamas when Gail and Paul arrived and I finally had to excuse myself at 1:30 to get dressed before I left for my meditation class. I got home at 6 p.m. and our friends, the Richardsons, arrived at 7 for dinner. Yes, they are still our friends, even after surviving an evening on the town with The Big Fella. (see the posting entitled, "Velcade--Second Cycle Begins"). Chris and Lenie Richardson are going to Italy this summer for their 25th wedding anniversary and we spent the evening talking about all the great places to see, the best restaurants, etc. (along with Julia and Catherine--who spent a semester in Florence). We also had to drink some Italian wine to capture the moment--yes I still imbibe on that week off. Sunday was relatively calm, with only one couple--Kevin and Mary Beall visiting us. Most amazing about these visitors is that (with the exception of the lunch and dinner guests) they were all "drop ins". We are so tickled that our friends are that comfortable that they just drop in to see us. That is usually such a rare occurrence in larger cities, but not in this household. And we are comfortable enough that I just lounge around in my p.j.'s. It is so much fun.
We have a couple of out of town visitors coming in this week. Tim Boulger, one of the cousins from southern California, will be here on Wednesday and Rich Boulger, who grew up with us in North Dakota, will be here on Thursday (for his second visit). I am looking forward to seeing both of them and catching up on all the family gossip.
Despite all the struggles and worries, life feels rich and full. We so enjoy all of our visitors and look forward to the weekends when we know our friends will be dropping in for a visit. I think our daughters are of a similar opinion, as they certainly like to come home for the weekends. All they can say about it is, "This is crazy." Yes, it is. And may it continue. Love, Dan
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