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
Sunday, October 29, 2006
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."
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