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
Thursday, April 27, 2006
Sunday, April 23, 2006
Just Checking In
Not much news, but I thought I would log on and let you know what's going on here in Denver. I'm doing quite well on the velcade/dexamethasone. The steroids make me feel better and generally lift my spirits, so that's nice, although I do feel a bit like I'm flying on these drugs. Susan, Catherine and Julia accuse me of having 'roid rage. I am more loud, aggressive, argumentative and obsessive compulsive on this drug--we had this experience one year ago on my first chemo regime (thalidomide/dexamethasone). But I also have more energy. The weather has been beautiful so I have been taking lots of bike rides as well.
Susan leaves for Medjagoria this coming Thursday--a pilgrimage to the site of many apparitions of the Blessed Mother Mary. She is doing this for me and for her and will be praying for my health. Unfortunately she has come down with a sinus infection this past week, which she is trying to get rid of before getting on the airplane.
While Susan is gone my mother will be visiting. The family is still nervous about leaving me alone. I guess that comes from those many months when I was not to be left alone. Anyway, we'll have a nice visit, although I continue to believe I don't need looking after.
Catherine graduates on May 11. She will be graduating from the University of Colorado with high distinction with a degree in Finance and International Business as well as a certificate in Leadership Training. She is already working part time for a pension consulting firm and will start full time with them in June. We are, of course, very proud of her. Our friends, Sigun and Joe, will be flying in for the ceremony, direct from Paris. Susan's brother, Gary, will also be joining us.
My brother Tom will be visiting over Memorial Day and we are already putting together the job list for him. He is always so willing to dig in and do whatever needs to be done.
And then in early June a group of my high school classmates will be visiting for a mini reunion of the class of 1970. We have about 14 people committed to the event already and are all getting excited about seeing one another--for some of us it has been 30 years since we last saw each other. I am so touched that they would all fly in to Denver for this event and can hardly contain my excitement.
As you can see, it will be a busy couple of months and it feels good to have the energy to have all these plans in the works. Despite its difficulties, life is full. More velcade/dex tomorrow and Thursday, then a week off. I'm doing well. Love, Dan
Susan leaves for Medjagoria this coming Thursday--a pilgrimage to the site of many apparitions of the Blessed Mother Mary. She is doing this for me and for her and will be praying for my health. Unfortunately she has come down with a sinus infection this past week, which she is trying to get rid of before getting on the airplane.
While Susan is gone my mother will be visiting. The family is still nervous about leaving me alone. I guess that comes from those many months when I was not to be left alone. Anyway, we'll have a nice visit, although I continue to believe I don't need looking after.
Catherine graduates on May 11. She will be graduating from the University of Colorado with high distinction with a degree in Finance and International Business as well as a certificate in Leadership Training. She is already working part time for a pension consulting firm and will start full time with them in June. We are, of course, very proud of her. Our friends, Sigun and Joe, will be flying in for the ceremony, direct from Paris. Susan's brother, Gary, will also be joining us.
My brother Tom will be visiting over Memorial Day and we are already putting together the job list for him. He is always so willing to dig in and do whatever needs to be done.
And then in early June a group of my high school classmates will be visiting for a mini reunion of the class of 1970. We have about 14 people committed to the event already and are all getting excited about seeing one another--for some of us it has been 30 years since we last saw each other. I am so touched that they would all fly in to Denver for this event and can hardly contain my excitement.
As you can see, it will be a busy couple of months and it feels good to have the energy to have all these plans in the works. Despite its difficulties, life is full. More velcade/dex tomorrow and Thursday, then a week off. I'm doing well. Love, Dan
Friday, April 14, 2006
6 More Weeks of Velcade
Yes, the visit with Rifkin took place today at 4 p.m. The numbers report: IGGs at 2586, down from 2601. Not impressive; not even deemed responsive; but not upward. The multiple myeloma continues to be stable. The skeletal survey shows no change from 6 months ago, so that is good. Kidney and liver function are OK. I was more worried about the kidney function and a sore right hip. Rifkin attributes the hip pain to arthritis, although he is going to have the xray reexamined to make sure there is no change. No, it's not the bike riding as it started before I bought the bike. Because on the nonresponsiveness, however, I do not qualify for staying on the study for 4 more cycles.
Rifkin gave me the option of continuing with the velcade for 2 more cycles or going to Revlimid. Rifkin has presented papers at national conferences showing that 15% of the people on velcade don't show a response until 6 cycles. Feeling lucky, I chose 2 more cycles of velcade, which Rifkin said he was very comfortable with. Then I asked about using it in conjunction with dexamethasone (a steroid). He agreed that would be a good idea, and he could try the combination as I will no longer be in the study. My first treatment was thalidomide with dexamethasone,and I had a good response; although that combo ultimately put me in the hospital with a myriad of problems. So, the plan is 2 more cycles of velcade, with dexamethasone given IV with each shot of velcade. I felt that I had done my homework today, asked a number of questions, received good answers, and am pleased with the plan going forward. Susan and I both were relieved. Although we would certainly loved to have received news of a big drop in the IGGs, we have had doctor appointments with much worse news. Maybe stability in the numbers is OK after all.
Rifkin was also pleased to hear of my bike riding, saying that one of the goals of treatment is to give people some quality of life during treatment. He asked about work and I told him of my continuing struggles with back pain and memory issues, such that I was not comfortable taking on client's legal matters. (energy is also unpredictable) I taught a class at DU law school a few weeks ago. It was a good "trial run" as after one hour my back was killing me and I was exhausted. So much for that. I guess I'll stick with a leisurely bike ride!
If you didn't see the pictures from Australia, check out the prior posting. Those pictures are, again, compliments of John Sadwith, executive director of Colorado Trial Lawyers. He also provided the pictures from Africa and South America. Talk about being connected! Thank you John.
So, I start the velcade/dexamethasone on Monday and will finish in 6 weeks, likely with a bone marrow biopsy to check the cancer levels. I'll keep you posted if anything interesting happens on my bike rides.
Rifkin gave me the option of continuing with the velcade for 2 more cycles or going to Revlimid. Rifkin has presented papers at national conferences showing that 15% of the people on velcade don't show a response until 6 cycles. Feeling lucky, I chose 2 more cycles of velcade, which Rifkin said he was very comfortable with. Then I asked about using it in conjunction with dexamethasone (a steroid). He agreed that would be a good idea, and he could try the combination as I will no longer be in the study. My first treatment was thalidomide with dexamethasone,and I had a good response; although that combo ultimately put me in the hospital with a myriad of problems. So, the plan is 2 more cycles of velcade, with dexamethasone given IV with each shot of velcade. I felt that I had done my homework today, asked a number of questions, received good answers, and am pleased with the plan going forward. Susan and I both were relieved. Although we would certainly loved to have received news of a big drop in the IGGs, we have had doctor appointments with much worse news. Maybe stability in the numbers is OK after all.
Rifkin was also pleased to hear of my bike riding, saying that one of the goals of treatment is to give people some quality of life during treatment. He asked about work and I told him of my continuing struggles with back pain and memory issues, such that I was not comfortable taking on client's legal matters. (energy is also unpredictable) I taught a class at DU law school a few weeks ago. It was a good "trial run" as after one hour my back was killing me and I was exhausted. So much for that. I guess I'll stick with a leisurely bike ride!
If you didn't see the pictures from Australia, check out the prior posting. Those pictures are, again, compliments of John Sadwith, executive director of Colorado Trial Lawyers. He also provided the pictures from Africa and South America. Talk about being connected! Thank you John.
So, I start the velcade/dexamethasone on Monday and will finish in 6 weeks, likely with a bone marrow biopsy to check the cancer levels. I'll keep you posted if anything interesting happens on my bike rides.
Thursday, April 13, 2006
Australia!
[Dan's comment]
Photos from Australia. We have now circled the globe and received get well wishes from every continent. Amazing, just absolutely amazing.
From: Eva Scheerlinck
Subject: Photos for Dan
Hi John
As promised, here are some photos we took for Dan yesterday at the Sydney Opera House and Sydney Harbour Bridge. The people in the photo are JoAnne Barnes, Courtney Oliver, Kyrn Stevens, Patrick McCarthy, James Fielding, Gerry Ferretter and myself.
We all enjoyed our little field trip to the harbour. We hope they bring a smile to Dan's face.
[posted for Dan by Glen]
Saturday, April 01, 2006
The Roller Coaster Turns Into a Bicycle
After those last two posts, let's lighten things up a bit, don't you agree?
Julia and I went bicycle shopping today--for me. After a cursory review of the high end bikes, we selected a low end, wide seater with upright handlebars for yours truly. NOw, buying a bicycle might not be a bit deal, unless the buyer was in a walker 7 months ago and could hardly walk up a set of stairs 4 months ago. Under those circumstances this is a BIG DEAL. I remember thinking in January that I hoped I could recover enough from the transplant to ride a bike this Spring. Well, guess what--we have arrived!
The family was so cute. First, Julia maintained a watchful eye as I took my test drive. She tried to help me off the bike, but I refused any assistance, as I knew I had to do this on my own, or I wasn't deserving of the vehicle. No spills, so I didn't have to buy the training wheels. Wouldn't that be a sight! Susan and Catherine were concerned when I said I was going to ride my new bike home from the store--a mere 2 or 3 miles. I was required to take my cell phone "just in case", and when I turned the corner at home there was Susan with her camera in hand to preserve the moment. Small steps but important nonetheless.
I got over my funk within the required 2 days and am now ready for whatever the doctor prescribes. And in the meantime, if you need to get ahold of me, call me on the cell, as I will most likely be out for a ride.
Love, Dan
Julia and I went bicycle shopping today--for me. After a cursory review of the high end bikes, we selected a low end, wide seater with upright handlebars for yours truly. NOw, buying a bicycle might not be a bit deal, unless the buyer was in a walker 7 months ago and could hardly walk up a set of stairs 4 months ago. Under those circumstances this is a BIG DEAL. I remember thinking in January that I hoped I could recover enough from the transplant to ride a bike this Spring. Well, guess what--we have arrived!
The family was so cute. First, Julia maintained a watchful eye as I took my test drive. She tried to help me off the bike, but I refused any assistance, as I knew I had to do this on my own, or I wasn't deserving of the vehicle. No spills, so I didn't have to buy the training wheels. Wouldn't that be a sight! Susan and Catherine were concerned when I said I was going to ride my new bike home from the store--a mere 2 or 3 miles. I was required to take my cell phone "just in case", and when I turned the corner at home there was Susan with her camera in hand to preserve the moment. Small steps but important nonetheless.
I got over my funk within the required 2 days and am now ready for whatever the doctor prescribes. And in the meantime, if you need to get ahold of me, call me on the cell, as I will most likely be out for a ride.
Love, Dan
Friday, March 31, 2006
Healing Images
More stream of consciousness, but bear with me. This household is exhausted from the heaviness of this struggle, as I'm sure you are, but that's what you get when you sign up to be a "blogger." No one ever accused me of being a lightweight on matters of "the meaning of life". Back in the 70's we used to have sarcastic discussions of "what is reality"; Howie's position during any of those discussions was simply stated, "Who Cares?" Well, my friend, it is obvious you care.
I was so touched by recent blog comments I began contemplating this community of support that has rallied to my aid. The thought arises from this contemplation: our bodies heal themselves when cut, we involuntarily stop bleeding and over time the cells heal the wound. This community of family and friends is a macrocosm of a single body; each of us comprising individual cells in that larger body. The image forms: my body is an individual injured cell, surrounded by healthy cells (you, my friends and family). The healthy cells rally to heal their injured cellular colleague. They press against my cell membrane, sending healing energy into my cell. My cell begins to heal, to reform into a healthy cell, just as the cells in my body are healing. The image is very strong and stays with me. I meditate last night saying a healing prayer known as the Medicine Buddha; A powerful sanskrit chant that takes me into a trance. The image of the community of healthy cells surrounding me stays with me throughout the meditation.
I awake this morning from a dream. Pope Benedict appeared to me in my dream, introduced himself, "Hello, I'm Pope Benedict", placed his hand on my forehead and blessed me. Clear as day he was standing there with his hand on my forehead. I couldn't tell you the last time I even thought about the Pope.
Just yesterday my friend Doug Kappel and I exchanged emails about whether I was a practicing Catholic. In response to his sister, Deb's, question about whether I was a practicing Catholic, I waxed on and on about my own spirituality, unbounded by Catholic dogma or practice. I am more Buddhist or Hindu than Catholic in my practices, yet there is no conflict between my spirituality and that of any other religious follower. Spirit is spirit. So what's the Pope doing appearing in my dream? PLease, do not answer that rhetorical question. I accept the ways of spiritual healing and acknowledge I know little of that world. But I understand this much: you are as important to me in this healing process as are my doctors. You are all a part of the energy of the world, whether called God, Jesus, Spirit, or Universal Consciousness, and that energy is all powerful. Thank you for sending your prayers and energy into my cells. Love, Dan
P.S. I told Doug only yesterday that I would not publicize my spiritual beliefs as I did not want the blog to become a forum for religious debate, and here I am putting it on the front burner. But what am I to do when the Pope appears to me in a dream? I truly am awed and humbled by the experience, like so many I have had in the past year.
P.S.S. I spoke with Rifkin by phone the other night about my concerns. He is such a nice doctor. He just presented a paper that demonstrates that some people don't respond to velcade until the 4th, 5th, or 6th cycle. So, even though I might not qualify for continued participation in the clinical trial, I might be able to go on the velcade for a few more cycles, if my numbers are continuing to move downward. Also, the coordinator of the clinical trial told me that insurance usually pays for the velcade. We'll have a plan on April 14th, after we meet with Rifkin (late afternoon appointment so don't expect a posting until the 15th.
I was so touched by recent blog comments I began contemplating this community of support that has rallied to my aid. The thought arises from this contemplation: our bodies heal themselves when cut, we involuntarily stop bleeding and over time the cells heal the wound. This community of family and friends is a macrocosm of a single body; each of us comprising individual cells in that larger body. The image forms: my body is an individual injured cell, surrounded by healthy cells (you, my friends and family). The healthy cells rally to heal their injured cellular colleague. They press against my cell membrane, sending healing energy into my cell. My cell begins to heal, to reform into a healthy cell, just as the cells in my body are healing. The image is very strong and stays with me. I meditate last night saying a healing prayer known as the Medicine Buddha; A powerful sanskrit chant that takes me into a trance. The image of the community of healthy cells surrounding me stays with me throughout the meditation.
I awake this morning from a dream. Pope Benedict appeared to me in my dream, introduced himself, "Hello, I'm Pope Benedict", placed his hand on my forehead and blessed me. Clear as day he was standing there with his hand on my forehead. I couldn't tell you the last time I even thought about the Pope.
Just yesterday my friend Doug Kappel and I exchanged emails about whether I was a practicing Catholic. In response to his sister, Deb's, question about whether I was a practicing Catholic, I waxed on and on about my own spirituality, unbounded by Catholic dogma or practice. I am more Buddhist or Hindu than Catholic in my practices, yet there is no conflict between my spirituality and that of any other religious follower. Spirit is spirit. So what's the Pope doing appearing in my dream? PLease, do not answer that rhetorical question. I accept the ways of spiritual healing and acknowledge I know little of that world. But I understand this much: you are as important to me in this healing process as are my doctors. You are all a part of the energy of the world, whether called God, Jesus, Spirit, or Universal Consciousness, and that energy is all powerful. Thank you for sending your prayers and energy into my cells. Love, Dan
P.S. I told Doug only yesterday that I would not publicize my spiritual beliefs as I did not want the blog to become a forum for religious debate, and here I am putting it on the front burner. But what am I to do when the Pope appears to me in a dream? I truly am awed and humbled by the experience, like so many I have had in the past year.
P.S.S. I spoke with Rifkin by phone the other night about my concerns. He is such a nice doctor. He just presented a paper that demonstrates that some people don't respond to velcade until the 4th, 5th, or 6th cycle. So, even though I might not qualify for continued participation in the clinical trial, I might be able to go on the velcade for a few more cycles, if my numbers are continuing to move downward. Also, the coordinator of the clinical trial told me that insurance usually pays for the velcade. We'll have a plan on April 14th, after we meet with Rifkin (late afternoon appointment so don't expect a posting until the 15th.
Monday, March 27, 2006
Musings of a Passenger on a Roller Coaster
I don't know how to relate this day's events other than the stream of consciousness that has plagued me all day. This posting will probably provide the clearest look into the heart of a cancer survivor struggling with his disease. It is neither optimistic nor pessimistic. It is a window into my mind this day, like so many days. It is raw and unapologetic.
We were told early on that this would be a roller coaster ride, why do I continually forget that? There is a lesson here, not to go up when the news is good, no matter how tempting, and not to go down when the news is bad. But I am human after all.
First the context: Feeling good, run into a friend last night at the Avalanche hockey game whom I haven't seen since "the diagnosis". He has heard. He cannot believe how good I look. I tell him the new drug is working.
This morning I trot off to the clinic; decline Susan's invitation to accompany me as "I will not be seeing Rifkin." Check in and get ready for the stick in the arm for the blood draw, the antinausea meds, and the velcade. Nurse says, "I see you're seeing Rifkin today."
"No, just getting the velcade as far as I know. But if he wants to stop in, I'll always be glad to talk with him." Nurse: "no, you are on his schedule so he will be seeing you."
Everything OK on the exam, but then Rifkin lays on me that I will not continue on velcade for another 3 months unless my numbers are down 25% from baseline. That translates, according to him, to a need to get the IGGs to 2100. He says my baseline is 2800--what your IGGs were when we started. "What's up with that, you told me I was at 3220 and dropped to 2800." We argue about my baseline, he punts the issue by saying, "well you haven't acheived the 25% drop even if you started at 3200." I'm not happy. and I have enough energy to get angry as opposed to sad. I start to argue, displaying signs of my old self, but I'm no match for the doctor, not on chemo, not on his turf. Whatever I sputter is unpersuasive. Besides, I don't even know why I'm arguing. Frustration, no doubt. But, no resolution of the issue, as I still have this last cycle to see where my numbers will end up. Do I dare hope for a 500 number drop on this cycle?
If I don't get to the magic 25% drop in numbers, I go on another clinical trial. THis time with Revlimid, a new drug that came out about the time velcade was approved a year ago. Rifkin is all excited about this drug; just like he was excited about velcade. He just returned from a conference last week singing the praises of Revlimid; "it's had some amazing results." Same words I heard 2 months ago about velcade. He leaves. I steam, I sulk. I can't think. I am frustrated not only because I can't think, but I can't think quickly anymore. What's the point. My brain is fried with chemo, emotion, frustration, anger. I used to be so proud of my great memory. Nothing could escape my steel trap mind. The steel trap has been cut into a sieve. Nothing stays in anymore.
Questions drown my brain, but he is already out the door and down the hall.No one ever told me of "qualifying criteria" for continued participation. I'm reminded of what I read only last night:
"The principle is simple and at first glance makes a certain sort of sense. In the case of complicated, possibly fatal and emotionally charged illness, never tell the patient more than he is likely to find out for himself, and only ever give the best-case scenario."
This from the book written by a multiple myeloma survivor of 7 years who refused all medical treatment and chemotherapy and went natural with herbs, vitamins, breathing exercises. "Living Proof" "A Medical Mutiny" by Micheal Gearin-Tosh. I understand this. So what if Rifkin had told me at the outset I need to achieve a 25% drop or no second three month cycle? I would have been fretting, just like I am now--only I would have started 2 months ago. I really believe oncologists learn to give dribs and drabs, only as needed. But truly out of compassion for their patients, as they know from experience there is only so much we can handle and then we shut down, or go into a permanent downward spiral.
Why am I reading this book, when I have chosen the opposite route? Is the herbal routine a fallback? Will I have the courage to go herbal when/if chemo fails me? Will it be too late? All I want is hope, give me good news, tell me I am making progress against this insidious cancer.
Instead, Rifkin tells me, "we've stabilized your disease." This does nothing for me. Stability is not our goal.
The Revlimid trial is called a "compassionate use" study. What is that? Sounds more like charity than science. I long for a scientifically established certain outcome. Not in this life. Not for anyone.
In the minutes before Rifkin walked in I was reading the buddhist monk, Nhich Nhat Hanh's book, "Peace is Every Step", where he says, "Hope is for the future. It cannot help us discover joy, peace, or enlightenment in the present moment....Hope can create an obstacle for you, and if you dwell in the energy of hope, you will not bring yourself back entirely into the present moment." What am I to think? I want to hope. Hope springs eternal. Am I creating obstacles to my enjoying my life by hoping for a respite from this nastiness? No doubt. Seems to be the human condition.
I no longer want to be a cancer survivor, the "brave, courageous" person facing this nasty disease. I never wanted to be "an example" of how to cope with such news. I want to slip back into my anonymous life. There is no "hope" of that, unfortunately. No matter. The journey has already begun and must be completed.
Another poem crosses my mind; this one from a book my brother, Tom, sent me, "A Whole New Life" by Reynolds Price. An encouraging, uplifting, inspiration memoir of Reynolds' cancer survival story. His poem, entitled, "The Dream of Refusal" ends with this: "I will walk all night. I will not die of cancer. Nothing will make me dance in that dark."
Yes, that would describe the state of my mind and my spirit. I refuse to acknowledge the darkness and most assuredly will not "go there" in my thoughts, despite daily temptations.
So, I get my velcade today and another shot on Thursday, then the blood draw a week later to see where my IGGs are. Meeting with Rifkin on APril 14th for the blood test results and the plan of action. Two weeks off the velcade. Is that good news? Hardly seems like it anymore. THe news of no bone marrow biopsy also fails to lift my spirits. Rifkin explained that if one doesn't qualify for continued participation then, the drug is no longer given free by the manufacturer. While he could continue me with it, it would be in a non FDA approved application (off label) and thus, my insurance company might (MOST PROBABLY) fight paying for it on the basis that it is experimental. At $6,000 a week, that expense would chew me up in no time.
The roller coast has reached its zenith and is plummeting. How can one sit in an examining room and have the same sensation in one's stomach as a plummeting roller coaster? I want to throw up.
I call Susan from the parking lot, give her the abbreviated version of events and go to work. I cannot go home with my thoughts. Escape to my work--an old habit perhaps, but effective. Before I know it, it's 5 o'clock, time to go home. How time flies when...
Catherine and Susan have conspired to present me with a fabulous meal and the face of optimism. "Dad, you're entitled to your two days." Catherine says, referring to what we have all learned is the time I need to get over this kind of news. Too much bad news, too many two day recovery periods. Well, one day down, one to go. Tonight during dinner I was in the present. I was enjoying Susan and Catherine and their love for me. In this household Susan's heritage has taught us: food is love.
Cousine Eileen just dropped in, in the middle of the last sentence, with homemade chocolate chip cookies, just for me. No kidding. Food is love.
I tell myself, stay in the present, just stay in the light. Do not dance in the dark. Goodnight my friends. I am fine. I love you all. Dan
We were told early on that this would be a roller coaster ride, why do I continually forget that? There is a lesson here, not to go up when the news is good, no matter how tempting, and not to go down when the news is bad. But I am human after all.
First the context: Feeling good, run into a friend last night at the Avalanche hockey game whom I haven't seen since "the diagnosis". He has heard. He cannot believe how good I look. I tell him the new drug is working.
This morning I trot off to the clinic; decline Susan's invitation to accompany me as "I will not be seeing Rifkin." Check in and get ready for the stick in the arm for the blood draw, the antinausea meds, and the velcade. Nurse says, "I see you're seeing Rifkin today."
"No, just getting the velcade as far as I know. But if he wants to stop in, I'll always be glad to talk with him." Nurse: "no, you are on his schedule so he will be seeing you."
Everything OK on the exam, but then Rifkin lays on me that I will not continue on velcade for another 3 months unless my numbers are down 25% from baseline. That translates, according to him, to a need to get the IGGs to 2100. He says my baseline is 2800--what your IGGs were when we started. "What's up with that, you told me I was at 3220 and dropped to 2800." We argue about my baseline, he punts the issue by saying, "well you haven't acheived the 25% drop even if you started at 3200." I'm not happy. and I have enough energy to get angry as opposed to sad. I start to argue, displaying signs of my old self, but I'm no match for the doctor, not on chemo, not on his turf. Whatever I sputter is unpersuasive. Besides, I don't even know why I'm arguing. Frustration, no doubt. But, no resolution of the issue, as I still have this last cycle to see where my numbers will end up. Do I dare hope for a 500 number drop on this cycle?
If I don't get to the magic 25% drop in numbers, I go on another clinical trial. THis time with Revlimid, a new drug that came out about the time velcade was approved a year ago. Rifkin is all excited about this drug; just like he was excited about velcade. He just returned from a conference last week singing the praises of Revlimid; "it's had some amazing results." Same words I heard 2 months ago about velcade. He leaves. I steam, I sulk. I can't think. I am frustrated not only because I can't think, but I can't think quickly anymore. What's the point. My brain is fried with chemo, emotion, frustration, anger. I used to be so proud of my great memory. Nothing could escape my steel trap mind. The steel trap has been cut into a sieve. Nothing stays in anymore.
Questions drown my brain, but he is already out the door and down the hall.No one ever told me of "qualifying criteria" for continued participation. I'm reminded of what I read only last night:
"The principle is simple and at first glance makes a certain sort of sense. In the case of complicated, possibly fatal and emotionally charged illness, never tell the patient more than he is likely to find out for himself, and only ever give the best-case scenario."
This from the book written by a multiple myeloma survivor of 7 years who refused all medical treatment and chemotherapy and went natural with herbs, vitamins, breathing exercises. "Living Proof" "A Medical Mutiny" by Micheal Gearin-Tosh. I understand this. So what if Rifkin had told me at the outset I need to achieve a 25% drop or no second three month cycle? I would have been fretting, just like I am now--only I would have started 2 months ago. I really believe oncologists learn to give dribs and drabs, only as needed. But truly out of compassion for their patients, as they know from experience there is only so much we can handle and then we shut down, or go into a permanent downward spiral.
Why am I reading this book, when I have chosen the opposite route? Is the herbal routine a fallback? Will I have the courage to go herbal when/if chemo fails me? Will it be too late? All I want is hope, give me good news, tell me I am making progress against this insidious cancer.
Instead, Rifkin tells me, "we've stabilized your disease." This does nothing for me. Stability is not our goal.
The Revlimid trial is called a "compassionate use" study. What is that? Sounds more like charity than science. I long for a scientifically established certain outcome. Not in this life. Not for anyone.
In the minutes before Rifkin walked in I was reading the buddhist monk, Nhich Nhat Hanh's book, "Peace is Every Step", where he says, "Hope is for the future. It cannot help us discover joy, peace, or enlightenment in the present moment....Hope can create an obstacle for you, and if you dwell in the energy of hope, you will not bring yourself back entirely into the present moment." What am I to think? I want to hope. Hope springs eternal. Am I creating obstacles to my enjoying my life by hoping for a respite from this nastiness? No doubt. Seems to be the human condition.
I no longer want to be a cancer survivor, the "brave, courageous" person facing this nasty disease. I never wanted to be "an example" of how to cope with such news. I want to slip back into my anonymous life. There is no "hope" of that, unfortunately. No matter. The journey has already begun and must be completed.
Another poem crosses my mind; this one from a book my brother, Tom, sent me, "A Whole New Life" by Reynolds Price. An encouraging, uplifting, inspiration memoir of Reynolds' cancer survival story. His poem, entitled, "The Dream of Refusal" ends with this: "I will walk all night. I will not die of cancer. Nothing will make me dance in that dark."
Yes, that would describe the state of my mind and my spirit. I refuse to acknowledge the darkness and most assuredly will not "go there" in my thoughts, despite daily temptations.
So, I get my velcade today and another shot on Thursday, then the blood draw a week later to see where my IGGs are. Meeting with Rifkin on APril 14th for the blood test results and the plan of action. Two weeks off the velcade. Is that good news? Hardly seems like it anymore. THe news of no bone marrow biopsy also fails to lift my spirits. Rifkin explained that if one doesn't qualify for continued participation then, the drug is no longer given free by the manufacturer. While he could continue me with it, it would be in a non FDA approved application (off label) and thus, my insurance company might (MOST PROBABLY) fight paying for it on the basis that it is experimental. At $6,000 a week, that expense would chew me up in no time.
The roller coast has reached its zenith and is plummeting. How can one sit in an examining room and have the same sensation in one's stomach as a plummeting roller coaster? I want to throw up.
I call Susan from the parking lot, give her the abbreviated version of events and go to work. I cannot go home with my thoughts. Escape to my work--an old habit perhaps, but effective. Before I know it, it's 5 o'clock, time to go home. How time flies when...
Catherine and Susan have conspired to present me with a fabulous meal and the face of optimism. "Dad, you're entitled to your two days." Catherine says, referring to what we have all learned is the time I need to get over this kind of news. Too much bad news, too many two day recovery periods. Well, one day down, one to go. Tonight during dinner I was in the present. I was enjoying Susan and Catherine and their love for me. In this household Susan's heritage has taught us: food is love.
Cousine Eileen just dropped in, in the middle of the last sentence, with homemade chocolate chip cookies, just for me. No kidding. Food is love.
I tell myself, stay in the present, just stay in the light. Do not dance in the dark. Goodnight my friends. I am fine. I love you all. Dan
Thursday, March 23, 2006
Velcade Continues to Do Its Work
Yes, today is the day for the "numbers" report. Today, March 23rd, also marks the one year anniversary of my multiple myeloma diagnosis. First, the numbers: Iggs are down to 2601 from a previous 2837. So, we have moved from 3220 to 2601--more than 600 points in a little over 2 months. I am happy, relieved, encouraged, hopeful, and thankful. I know we are not "there" yet, but we are moving in the right direction and that makes all the difference in how I feel when I get out of bed each morning. My white count is also better than usual. For you numbers watchers: white count at 2.5 today, with neutrophils at 1.4. Usually those numbers plummet as soon as I start my velcade (for example, I expected the white count to be around 1.6 and neutrophils around 800.)
Contrary to what I last reported, I did not go on the herbal regime. I tried it for a couple of days, felt sick to my stomach and started to question why I would want to potentially interfere with a good drug. So I just used a concoction that is mainly pulverized rice powder. Now that the numbers have moved, I don't know whether to stay with that powder or stop it. The numbers did move down more than 200 points. But would they have moved further without its use? or less? who knows?I am waffling, so I will ask you bloggers for your thoughts--continue? or discontinue? I am most anxious to hear from our scientist friend, Molly Johnston. Have I messed up the experiment by adding too many variables? What to do now?
And the final results of the DNA testing of Tom's blood shows he is also a 100% match. That makes both my brothers acceptable donors for a stem cell transplant. Looks like that backyard tussle may have to take place after all--unless I can get into remission on the velcade. Yeh, I like that approach--no more fighting my brothers.
Now, about that 1 year anniversary. One year ago, almost to the hour, I received a call from my internist telling me that my MRI and blood work were leading to the diagnosis of multiple myeloma. He had already faxed my info to Rifkin and talked to him about my diagnosis. He had made an appointment for me with Rifkin for the next day. Susan was in Houston taking care of her brother following his back surgery and I had to call her with the news and ask her to get on a plane to be at the appointment with Rifkin. She arrived at 8 a.m. the following morning, having gotten no sleep. In the year that has passed we have received a prostate cancer diagnosis, and gone through 5 chemo regimes, 2 back surgeries, a stem cell transplant and various other hospitalizations and treatments. But, guess what? In the words of Elton John: I'm Still Standing.
I feel better these days. Better, in fact, than I have in many many months. I believe this is a good drug and it's working. Susan and Catherine know I'm feeling better because I am not as passive as I have been over the past many months. They sometimes would prefer me in a more sedated state. No, not really, just less feisty. What can I say? It's been a long time without energy. I'm still adjusting to this new found energy--still not the energy I used to have but clearly more than I've had since .....oh my god, since June. We are making progress!
And a Julia story: Julia is just completing her spring break. She and a friend spent their 10 day spring break at my cousin's, Kelly Boulger's, in Orange County, CA. Kelly and his wife, Donna, graciously offered to let Julia and her friend, Suzanne, stay with them and explore southern California. Have they lost their minds--offering to house two 18 year girls on spring break? Much to our amazement, Julia accepted his offer, and moved in with them last Thursday! She and her friend Suzanne have "hung out" with Kelly's son, Sean, for much of the week, and gotten to know the new cousins, Kelly's and Donna's other kids: Riley, Shannon, and Corinne. The cousins got along famously, Julia and Suzanne got to experience southern Cal., and Julia got to see my uncle Dabby and aunt Phyllis. Susan and I are very grateful to Kelly and Donna for their hospitality, and are appreciative of what good kids Julia and Suzanne are. Kelly reports they were no problem whatsoever. Definitely not the kind of spring break that makes the news!
Next report? I guess it will be the bone marrow biopsy that should happen in about 2 weeks. Once that report comes in I will know if I am on for another 3 month velcade regime. I hope so. Until then, much love to all. Dan
And from Susan: I have not gone to the last few visits to the cancer center feeling that queasiness in the pit of my stomach as I asked Dan if he wanted me to come along. He would kindly say, "not necessary", and I would walk or pray or wait to hear from him. Today I decided to just go along and I was so glad I did. This strong, brave, determined to get this in remission guy waited too patiently for the numbers. When he read the report I saw the relief in his body and his face. Sometimes, because he never complains and always puts the best face on everything, I forget what a huge mountain he is climbing and how much energy it takes to face the day and this terrible cancer. So I left thinking that I am blessed to be on this journey with such an extraordinary man. It is not what I would have wanted but I will accept it with as much grace as I can for I am so grateful that Dan is still here a year later, thank God.
And he walked in today with the Colorado Super Lawyers Journal. He is named a "Colorado Super Lawyer" for Plaintiff's Personal Injury. This represents the top 5% of the lawyers in Colorado, as voted on by the Colorado Bar. The girls and I are so proud of him. Way to go Dan!!!
Contrary to what I last reported, I did not go on the herbal regime. I tried it for a couple of days, felt sick to my stomach and started to question why I would want to potentially interfere with a good drug. So I just used a concoction that is mainly pulverized rice powder. Now that the numbers have moved, I don't know whether to stay with that powder or stop it. The numbers did move down more than 200 points. But would they have moved further without its use? or less? who knows?I am waffling, so I will ask you bloggers for your thoughts--continue? or discontinue? I am most anxious to hear from our scientist friend, Molly Johnston. Have I messed up the experiment by adding too many variables? What to do now?
And the final results of the DNA testing of Tom's blood shows he is also a 100% match. That makes both my brothers acceptable donors for a stem cell transplant. Looks like that backyard tussle may have to take place after all--unless I can get into remission on the velcade. Yeh, I like that approach--no more fighting my brothers.
Now, about that 1 year anniversary. One year ago, almost to the hour, I received a call from my internist telling me that my MRI and blood work were leading to the diagnosis of multiple myeloma. He had already faxed my info to Rifkin and talked to him about my diagnosis. He had made an appointment for me with Rifkin for the next day. Susan was in Houston taking care of her brother following his back surgery and I had to call her with the news and ask her to get on a plane to be at the appointment with Rifkin. She arrived at 8 a.m. the following morning, having gotten no sleep. In the year that has passed we have received a prostate cancer diagnosis, and gone through 5 chemo regimes, 2 back surgeries, a stem cell transplant and various other hospitalizations and treatments. But, guess what? In the words of Elton John: I'm Still Standing.
I feel better these days. Better, in fact, than I have in many many months. I believe this is a good drug and it's working. Susan and Catherine know I'm feeling better because I am not as passive as I have been over the past many months. They sometimes would prefer me in a more sedated state. No, not really, just less feisty. What can I say? It's been a long time without energy. I'm still adjusting to this new found energy--still not the energy I used to have but clearly more than I've had since .....oh my god, since June. We are making progress!
And a Julia story: Julia is just completing her spring break. She and a friend spent their 10 day spring break at my cousin's, Kelly Boulger's, in Orange County, CA. Kelly and his wife, Donna, graciously offered to let Julia and her friend, Suzanne, stay with them and explore southern California. Have they lost their minds--offering to house two 18 year girls on spring break? Much to our amazement, Julia accepted his offer, and moved in with them last Thursday! She and her friend Suzanne have "hung out" with Kelly's son, Sean, for much of the week, and gotten to know the new cousins, Kelly's and Donna's other kids: Riley, Shannon, and Corinne. The cousins got along famously, Julia and Suzanne got to experience southern Cal., and Julia got to see my uncle Dabby and aunt Phyllis. Susan and I are very grateful to Kelly and Donna for their hospitality, and are appreciative of what good kids Julia and Suzanne are. Kelly reports they were no problem whatsoever. Definitely not the kind of spring break that makes the news!
Next report? I guess it will be the bone marrow biopsy that should happen in about 2 weeks. Once that report comes in I will know if I am on for another 3 month velcade regime. I hope so. Until then, much love to all. Dan
And from Susan: I have not gone to the last few visits to the cancer center feeling that queasiness in the pit of my stomach as I asked Dan if he wanted me to come along. He would kindly say, "not necessary", and I would walk or pray or wait to hear from him. Today I decided to just go along and I was so glad I did. This strong, brave, determined to get this in remission guy waited too patiently for the numbers. When he read the report I saw the relief in his body and his face. Sometimes, because he never complains and always puts the best face on everything, I forget what a huge mountain he is climbing and how much energy it takes to face the day and this terrible cancer. So I left thinking that I am blessed to be on this journey with such an extraordinary man. It is not what I would have wanted but I will accept it with as much grace as I can for I am so grateful that Dan is still here a year later, thank God.
And he walked in today with the Colorado Super Lawyers Journal. He is named a "Colorado Super Lawyer" for Plaintiff's Personal Injury. This represents the top 5% of the lawyers in Colorado, as voted on by the Colorado Bar. The girls and I are so proud of him. Way to go Dan!!!
Sunday, March 12, 2006
South America
Here is a photo from Rio, in front of the great Cristo de Corcovado. [Posted for Dan by Glen]
Africa
Here are "get well" pictures from Africa. Unbelievable! Now, off to Australia. and we'll have covered the world. [Posted for Dan by Glen]
Friday, March 10, 2006
No One Is Alone
From Susan: In reading the blog last night I was struck by something Joe wrote. In Naples, he described the hummm before mass began and then the walk up to received communion, not in customary single file, but in pairs. He said no one is ever alone in Naples. That resonated. I thought about it all day. I have days sometimes when I don't want to exercise, tidy the house, cook a meal, or answer the phone. The most I can do is lie on the sofa, brain dead. I think that every now and then the enormity of the past year just numbs the senses and I shut down. Without being too psychological, I suppose I am protecting myself.
But here is what happened. Cousin Eileen dropped by on Wednesday evening and we made sauce until 10:30 pm. I planned to meet her on Thursday and having spent my hours on the sofa, decided to call and tell her I was unable to move. But the mailman, Dwight, rang the doorbell with a package and asked how "Faja" was doing. Julia had written her Dad a card earlier in the week and had addressed it with her pet name for her Dad--"Faja". Dwight, who picks up on everything, reconnected me with his inquiry as to "Faja's" health.
So I wrap myself in a beautiful coat my brother sent for no reason other than a need to once again express his generosity, and found myself singing as I walked down 2nd Ave. I ran into our neighbors, Ingrid and Byron, and spent 20 minutes chatting. I arrived at the Marriott and spent a satifying few hours talking to Eileen about home (New York) and rememberances of another life.
But back to Joe's comment. Walking home about 10:30pm, still singing, and thinking that although it has been a year, the circle remains, the bonds with our family and friends grow stronger, and I find myself happy. Will wonders never cease?!
P.S. Dan didn't have a terrible Friday and we just finished a wonderful plate of pasta with homemade sauce. All topped off with a bottle of Italian wine (Dan even had a glass).
Susan
But here is what happened. Cousin Eileen dropped by on Wednesday evening and we made sauce until 10:30 pm. I planned to meet her on Thursday and having spent my hours on the sofa, decided to call and tell her I was unable to move. But the mailman, Dwight, rang the doorbell with a package and asked how "Faja" was doing. Julia had written her Dad a card earlier in the week and had addressed it with her pet name for her Dad--"Faja". Dwight, who picks up on everything, reconnected me with his inquiry as to "Faja's" health.
So I wrap myself in a beautiful coat my brother sent for no reason other than a need to once again express his generosity, and found myself singing as I walked down 2nd Ave. I ran into our neighbors, Ingrid and Byron, and spent 20 minutes chatting. I arrived at the Marriott and spent a satifying few hours talking to Eileen about home (New York) and rememberances of another life.
But back to Joe's comment. Walking home about 10:30pm, still singing, and thinking that although it has been a year, the circle remains, the bonds with our family and friends grow stronger, and I find myself happy. Will wonders never cease?!
P.S. Dan didn't have a terrible Friday and we just finished a wonderful plate of pasta with homemade sauce. All topped off with a bottle of Italian wine (Dan even had a glass).
Susan
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
Wednesday, February 22, 2006
Nina's Quilt
Speaking of the abundance of friends (see previous post), I have to tell you about the quilt that our friend, Nina Companion, had delivered about 2 weeks ago. Nina used to live in Colorado and, although she now lives in Massachusetts, has been a source of constant support for us these past months, including a visit this past fall. So 2 weeks ago Friday I was having a particularly bad day and Susan tells me that a package has arrived for me. I open the large box and there is a quilt, with pictures sewn throughout the quilt. Nina got the pictures from Julia and Catherine (which they scanned and emailed) and they are photos of our family taken during the past 20 years. They are printed on fabric and sewn into the quilt. The quilt is such a work of love, even more so because Nina herself suffers from health problems which no doubt made this project even more difficult. To top it all off, Nina called the girls and asked them to show up that evening to share in the joy of the arrival of the quilt; so Julia and Catherine both showed up, independently and unexpectedly, and raised my spirits considerably. The quilt is in my favorite color: blue, and it keeps me warm every morning during my daily meditation. These last two posts are but a few of the many gifts of love that our friends have brought to us. Calls, letters, cards, visits, gifts, food, flowers, prayers and innumerable blog postings have rained down upon us. We are so grateful. Love, Dan
Tuesday, February 21, 2006
An Abundance of Friends
Since almost 2 weeks have passed since my last update I thought it might be appropriate to at least let all of you know what has been going on in our lives these past two weeks. I finished my second cycle of velcade last Thursday, got quite sick on Friday, as expected, and am now in the "week off" and enjoying the absence of any heavy drugs being injected into my system. In celebration of completing the second cycle Susan and I were invited to the mountains to stay with our friends, the Dowells, who have built a beautiful home in the Colorado Rockies. We spent two nights at their house with them just relaxing. It was so nice. Marta fixed great meals, we took long walks, and we sat in front of the wood burning stove and talked and talked (and drank a little wine--another one of the benefits of being off the velcade!) We returned on Monday very refreshed. When we arrived home we found dinner had been placed on our front step by our friend, Jeff Hammerberg, who stops by at least once a week (usually more often)just to check on us. We weren't home even two hours and our friends the Jennettes dropped by with a freshly baked apple pie. Of course, we had to drink some wine with them. While we were enjoying that visit another friend and former teacher of both of our daughters, Brett James, and a friend of his drop in "just to say hi". Oh, and while we were away at the Dowells, our close friend Ruth Clements, brought our 2 daughters fresh baked cinnamon rolls. (yes, we left our 2 daughters home for the weekend--they don't take after their father, thank god!)
This morning the founder of this blog, Ted Bettridge, calls and says he has fresh baked french bread and would like to drop by. He arrived a short time later with 3 loaves of warm bread. So, of course, he and I have coffee and bread slathered in butter and jam. While we are still eating, in walk Susan and Ingrid (yes, the blogger from Italy, who is here visiting her guy wholives next door). Ted was thrilled to finally meet Ingrid, after reading her many interesting postings from Siena. Then the doorbell rings and it is Peggy Rottner, with more food to keep us healthy. Just another morning at the Pattersons!
And this is how it has gone ever since that day I was diagnosed, almost a year ago, and our friends, Doris and Devraj Sharma showed up at our door that evening with dinner for the entire family. And as long ago and as far away as that day now seems, I continue to marvel at the warmth, generosity and steadfastness of our friends. Of all the things I have learned during the struggles of this past year, I think the most important one is what all of you have taught me--which is how to be a true friend.
I continue to feel better than I have in a long time, even though I tire easily and Fridays are just "the pits". I start the third velcade cycle on Monday and I'll have more numbers a week from this coming Thursday. Until then, take care and I love you all. Dan
This morning the founder of this blog, Ted Bettridge, calls and says he has fresh baked french bread and would like to drop by. He arrived a short time later with 3 loaves of warm bread. So, of course, he and I have coffee and bread slathered in butter and jam. While we are still eating, in walk Susan and Ingrid (yes, the blogger from Italy, who is here visiting her guy wholives next door). Ted was thrilled to finally meet Ingrid, after reading her many interesting postings from Siena. Then the doorbell rings and it is Peggy Rottner, with more food to keep us healthy. Just another morning at the Pattersons!
And this is how it has gone ever since that day I was diagnosed, almost a year ago, and our friends, Doris and Devraj Sharma showed up at our door that evening with dinner for the entire family. And as long ago and as far away as that day now seems, I continue to marvel at the warmth, generosity and steadfastness of our friends. Of all the things I have learned during the struggles of this past year, I think the most important one is what all of you have taught me--which is how to be a true friend.
I continue to feel better than I have in a long time, even though I tire easily and Fridays are just "the pits". I start the third velcade cycle on Monday and I'll have more numbers a week from this coming Thursday. Until then, take care and I love you all. Dan
Thursday, February 09, 2006
Numbers Dropping and Spirits Rising
This past 11 months have been such a roller coaster that we are naturally quite guarded in receiving any news. Good news has been rare and unfortunately temporary. We are ever mindful of there being no cure for this nasty disease but always hopeful for a turn towards greater control over the propogation of bad cells or even a push into remission. With that in mind we happily received Dr. Rifkin's report today that my IGG numbers have moved downward since we started the velcade. The IGG is "the enemy" in Rifkin's words. My numbers had been rising just before going on the velcade--they went from 2840 in late December to 3220 by January 9th, just before we started the trial. They have now dropped back down to 2850, as of Monday, Feb. 6th. Definitely a move in the right direction and seen by Rifkin and my study coordinator as a good response to the velcade, particularly in light of my having only received 4 shots as of the testing. Our whole family is relieved and guardedly hopeful. The failure of the transplant was so difficult to hear and then the apprehension of waiting for these tests results was quite unnerving. I just didn't feel prepared to deal with a nonresponse or worse yet, continued rising of the numbers. This has been such a mental struggle and even a bit of good news can carry my attitude a long way towards hope and recovery. So, today is a good day and we are ever hopeful that we will establish a long trend toward normal numbers and remission. I know, because I can feel it, that so many of you are waiting for this news and that we are in your thoughts and prayers today. Susan, Catherine, Julia and I are so very grateful that you are all in our lives and for all of your support. It feels like we are encircled by a wall of friendship that protects, prays and supports us. It is a very nice feeling. Thank you once again to all of our friends. We will get through this.
Incidentally, the vitamin regime has had a very positive effect on my neuropathy, having reduced the frequency as well as the severity of the shooting pains. Is it time for the herbs? Do I even want to start that debate again? Never mind, I think I'll just stick with the velcade for awhile.
So, I got my second velcade shot today for this cycle and will get 2 more next week, then a week off--thank god. They'll do more IGG blood work the morning I start my 3rd cycle--which will be in 2 1/2 weeks. I should finish the first regime of 4 cycles sometime in late March/early April. Then another bone marrow biopsy and a decision whether to undergo another 3 month cycle of velcade. That's all for now. In light of today's news, I feel much better prepared to deal with the side effects these next weeks. As always, Love, Dan
Incidentally, the vitamin regime has had a very positive effect on my neuropathy, having reduced the frequency as well as the severity of the shooting pains. Is it time for the herbs? Do I even want to start that debate again? Never mind, I think I'll just stick with the velcade for awhile.
So, I got my second velcade shot today for this cycle and will get 2 more next week, then a week off--thank god. They'll do more IGG blood work the morning I start my 3rd cycle--which will be in 2 1/2 weeks. I should finish the first regime of 4 cycles sometime in late March/early April. Then another bone marrow biopsy and a decision whether to undergo another 3 month cycle of velcade. That's all for now. In light of today's news, I feel much better prepared to deal with the side effects these next weeks. As always, Love, Dan
Monday, February 06, 2006
Velcade--Second Cycle Begins
Last week was nice without the velcade. I didn't realize how much it affected me until I got off it. My energy returned, just in time for my brother Mike's visit. Mike promised to bring some "fun" to the mile high city and he accomplished his mission. He had us laughing much of the time, which felt quite "normal" for a change. Our friends, Chris and Lenie Richardson went out to dinner with us on Friday and we had a raucous time. I thought the restaurant was going to throw us out. Catherine thought Uncle Mike was "hysterical" and truly appreciates his humor. I'm not sure the other patrons agreed.
I had blood drawn today to check the myeloma levels, but I won't know the results until Thursday. My white count rebounded some during the week off (although not as high as when I was on the herbs) and my platelets are good, so I qualified for the next round of velcade; yippee! Interestingly, one of the nurses gave me some home remedies to help reduce the neuropathy I get from the velcade. The remedy is heavy doses of Vitamin B 12 and folic acid--the same combination that my herbalist prescribed for me! hmmmmm.
So we start another round. I still feel good (relatively) and people tell me I look good, to which I always respond that "I'm the picture of good health". Truly, you wouldn't know I had anything wrong with me simply by looking at me. I'm not looking forward to these next 2 weeks but then there will be another week off and that will be nice.
And finally, I must apologize for the long delay between posts. Arlene gave me a hard time yesterday for not keeping more current(all in good fun I should add). I'll try to do better. I am very moved when I hear that so many of my friends and family check the blog first thing every day. How sweet to be in your thoughts so consistently. Your good thoughts and energy keep me going (and apparently looking good as well). Take care all of you. I hope you have a fine week and I'll report the news on the myeloma either Thursday or Friday. Love to all, Dan
I had blood drawn today to check the myeloma levels, but I won't know the results until Thursday. My white count rebounded some during the week off (although not as high as when I was on the herbs) and my platelets are good, so I qualified for the next round of velcade; yippee! Interestingly, one of the nurses gave me some home remedies to help reduce the neuropathy I get from the velcade. The remedy is heavy doses of Vitamin B 12 and folic acid--the same combination that my herbalist prescribed for me! hmmmmm.
So we start another round. I still feel good (relatively) and people tell me I look good, to which I always respond that "I'm the picture of good health". Truly, you wouldn't know I had anything wrong with me simply by looking at me. I'm not looking forward to these next 2 weeks but then there will be another week off and that will be nice.
And finally, I must apologize for the long delay between posts. Arlene gave me a hard time yesterday for not keeping more current(all in good fun I should add). I'll try to do better. I am very moved when I hear that so many of my friends and family check the blog first thing every day. How sweet to be in your thoughts so consistently. Your good thoughts and energy keep me going (and apparently looking good as well). Take care all of you. I hope you have a fine week and I'll report the news on the myeloma either Thursday or Friday. Love to all, Dan
Friday, January 27, 2006
First Velcade Cycle is Over
Hello everyone. I wrote a lengthy post yesterday but alas the blog site went down in the midst of my writing and I lost it all. So I took 24 hours to recover and to see how much I can reconstruct. Yesterday (Thursday) I received my final velcade shot for the first phase along with an IV of zometa to keep building those bones back up. The side effects these past 2 weeks have included some nausea, which is controlled by meds, some neuropathy (shooting pains in the feet and some in the hands), which is tolerable, and significant fatigue the day after each of my velcade shots--Tuesdays and Fridays are energy challenges. But by the time I'm going in for my next shot, I seem to be feeling better. I am looking forward to having next week off from the velcade. My white count and neutrophils continue to fall and I am now neutropenic. Platelets are also low. I'm told this is most likely due to the velcade and we are hoping to see these numbers rise during my week off. They will check my myeloma numbers when I return for my first shot of the second cycle (Feb. 6th). I won't have the results until Wed. or Thurs. of that week and will report once I have more info.
My brother Mike is planning a visit next week and we are looking forward to it. We, as always, have a few jobs for him but mostly hope to just have some fun.
Both of the girls (young women to be more accurate) have returned to school. The house isn't as quiet as you might think as Catherine has started her part time job here in Cherry Creek and is here 3 days a week. While she is very busy with her work, course load and commute to Boulder, we are elated she is here so often and she also gets a good home cooked meal. Julia is taking calculus this block and is not happy. Her outlet? She plans to go skiing every weekend. Sounds like a gene I might have passed on to her.
Speaking of home cooking, Susan's cousin, Eileen Stinson, is on assignment here in Denver for the next 6 months and is staying at the JW Marriott here in Cherry Creek. Eileen is a fabulous Italian cook and has spent a few hours in our kitchen already. mmmmmm, delicious. She is also very funny and the girls think she is hysterical. Susan has long bemoaned the absence of family "out in the boondocks" so she is very happy a family member is now nearby.
With the posting from Antarctica my brother Tom commented that we are only missing posts from Africa and South America and we will have communicated with every one of the 7 continents. Not bad for a North Dakotan from the north side of the tracks.
So, I am doing well. My disease feels as if it has moved from dealing with acute situations to a chronic disease. While it is easier not to have to wrestle with the daily pain issues, the idea of always having to deal with these cancer treatments and the physical limitations due to my lack of energy and my back problems is hard to accept. My struggle with whether I will ever be able to try another case is another issue we'll leave for another day. I know we all age and as we do we will have to confront these issues; I just wasn't prepared to face these issues at the young age of 53. So be it. Don't worry, we still know how to laugh and have fun and as I continue to recover the from transplant we are certainly finding ourselves laughing a bit more. So, once again, stay with us as we walk this path and let's not forget to have some fun along the way. Love, Dan
My brother Mike is planning a visit next week and we are looking forward to it. We, as always, have a few jobs for him but mostly hope to just have some fun.
Both of the girls (young women to be more accurate) have returned to school. The house isn't as quiet as you might think as Catherine has started her part time job here in Cherry Creek and is here 3 days a week. While she is very busy with her work, course load and commute to Boulder, we are elated she is here so often and she also gets a good home cooked meal. Julia is taking calculus this block and is not happy. Her outlet? She plans to go skiing every weekend. Sounds like a gene I might have passed on to her.
Speaking of home cooking, Susan's cousin, Eileen Stinson, is on assignment here in Denver for the next 6 months and is staying at the JW Marriott here in Cherry Creek. Eileen is a fabulous Italian cook and has spent a few hours in our kitchen already. mmmmmm, delicious. She is also very funny and the girls think she is hysterical. Susan has long bemoaned the absence of family "out in the boondocks" so she is very happy a family member is now nearby.
With the posting from Antarctica my brother Tom commented that we are only missing posts from Africa and South America and we will have communicated with every one of the 7 continents. Not bad for a North Dakotan from the north side of the tracks.
So, I am doing well. My disease feels as if it has moved from dealing with acute situations to a chronic disease. While it is easier not to have to wrestle with the daily pain issues, the idea of always having to deal with these cancer treatments and the physical limitations due to my lack of energy and my back problems is hard to accept. My struggle with whether I will ever be able to try another case is another issue we'll leave for another day. I know we all age and as we do we will have to confront these issues; I just wasn't prepared to face these issues at the young age of 53. So be it. Don't worry, we still know how to laugh and have fun and as I continue to recover the from transplant we are certainly finding ourselves laughing a bit more. So, once again, stay with us as we walk this path and let's not forget to have some fun along the way. Love, Dan
Thursday, January 19, 2006
Velcade round two and thoughts on those herbs
Received my second shot of velcade today. Once again fairly uneventful, except for the following: white count is down to 2.4 today--from 3.8 on Monday. Neutrophils also dropped. Nurse says its due to the velcade most likely. Could it be due to not taking the herbs? no one can answer that and I'll comment more on that later. I did have a discussion with one of the nurses about my returning to the office for a few hours each day this week. She was a bit upset, and reminded once again that stressful environments for patients with myeloma are "toxic". I assured her I was trying to stay away from the stress, such as not interacting with clients or opposing lawyers and only going in for a few hours. She generally is not in favor of my return to the law firm environment. I, on the other hand, feel I need to do something on those days when I have more energy and hope that I can stay out of the fray when i go into the office. We'll see how it goes.--While I had pretty good energy this week, today I am quite tired, and in fact when I got home from the clinic had to take a nap. Not much threat of reestablishing a law practice with this kind of work ethic!
And now about those herbs. First, please understand that I love my doctor and think very highly of him and his knowledge and experience in the treatment of multiple myeloma (MM). While I can appreciate those of you who endorse more traditional medicine, I must say that my experience these past months, at least with this disease,makes me feel like a guinea pig. THe treatments have really not made much progress against the disease, but they certainly have hit me hard in other ways--such as wiping out my immune system and putting a strain on my kidneys. When I came down with the "crud", i.e., RSV, the baby virus, I got angry, as I know that I got that because of my compromised immune system, which is a direct result of my chemo. There have been times when I have certainly felt that the cure was going to get me before the disease did. I now understand the comments made by a couple of my doctors, that you have to be strong to survive this disease. What they meant is you have to be strong enough to endure the treatment regimes.
We all know that our bodies can heal themselves--witness the broken bones that have mended and the gaping flesh wounds that have healed. The same process can occur within my blood stream. Admittedly the herbal treatments don't have a lot of scientfic backup, but I blame the medical establishment for much of that. Linus Pauling is a great example. For those who are not familiar with him, he was a chemist, who won two nobel prizes--one for chemistry and one for peace. He did much research on megadoses of Vit. C as a treatment for cancer. He documented his results, presented it to numerous clinics, hospitals and med schools, and generally met with rejection and often ridicule. Having read a couple of his books, I believe he has legitimate scientific backup for his conclusions, but the medical community just doesn't want to believe it. (I did talk to my doctor about megadosing Vit. C, and although he did not discount its potential to help me, he thought it would be too hard on my kidneys--which are hit by my MM--but then so did most of the chemo he gave me.) I use this as an example and admit that most herbs don't have the scientific backup. That being said, there are MM survivors who have rejected traditional treatment and beaten the disease--my friend who referred me to the herbalist as well as another who wrote a book about his naturalisitic approach--"Medical Mutiny". The other problem is that most herbal approaches are taken only as a last resort--when all else has failed. One wonders what the results would be if it were a treatment of first resort. I started trying to figure out what nutrition could do for me in this struggle about 2 1/2 months ago and became very frustrated. For every wholistic approach, there was a harsh critic from the medical community and vice versa. I wish they would work more closely together instead of trying to trump one another. Simplistically, I feel that since my immune system is currently incapable of eradicating this cancer, herbs that can enhance my immune system function might present the possibility of increasing my body's ability to fight the cancer.
So, how do I answer my dilemna? I have decided to forgo the herbs for the first velcade cycle (2 weeks) to see what my numbers are while solely on velcade. Depending on the results, I may, or may not, restart the herbs. I will tell my doctor what I am doing. I am going to continue to take one of the products, which is a pulverized rice grain powder, as it really isn't an herb, but made from a natural food source. So, thanks for all the input and I'll keep you all informed. I really enjoyed all the thoughts and comments. What an interesting group you are! (and Arlene, thanks for the PDR reference, I am on it!) Love to all, Dan
And now about those herbs. First, please understand that I love my doctor and think very highly of him and his knowledge and experience in the treatment of multiple myeloma (MM). While I can appreciate those of you who endorse more traditional medicine, I must say that my experience these past months, at least with this disease,makes me feel like a guinea pig. THe treatments have really not made much progress against the disease, but they certainly have hit me hard in other ways--such as wiping out my immune system and putting a strain on my kidneys. When I came down with the "crud", i.e., RSV, the baby virus, I got angry, as I know that I got that because of my compromised immune system, which is a direct result of my chemo. There have been times when I have certainly felt that the cure was going to get me before the disease did. I now understand the comments made by a couple of my doctors, that you have to be strong to survive this disease. What they meant is you have to be strong enough to endure the treatment regimes.
We all know that our bodies can heal themselves--witness the broken bones that have mended and the gaping flesh wounds that have healed. The same process can occur within my blood stream. Admittedly the herbal treatments don't have a lot of scientfic backup, but I blame the medical establishment for much of that. Linus Pauling is a great example. For those who are not familiar with him, he was a chemist, who won two nobel prizes--one for chemistry and one for peace. He did much research on megadoses of Vit. C as a treatment for cancer. He documented his results, presented it to numerous clinics, hospitals and med schools, and generally met with rejection and often ridicule. Having read a couple of his books, I believe he has legitimate scientific backup for his conclusions, but the medical community just doesn't want to believe it. (I did talk to my doctor about megadosing Vit. C, and although he did not discount its potential to help me, he thought it would be too hard on my kidneys--which are hit by my MM--but then so did most of the chemo he gave me.) I use this as an example and admit that most herbs don't have the scientific backup. That being said, there are MM survivors who have rejected traditional treatment and beaten the disease--my friend who referred me to the herbalist as well as another who wrote a book about his naturalisitic approach--"Medical Mutiny". The other problem is that most herbal approaches are taken only as a last resort--when all else has failed. One wonders what the results would be if it were a treatment of first resort. I started trying to figure out what nutrition could do for me in this struggle about 2 1/2 months ago and became very frustrated. For every wholistic approach, there was a harsh critic from the medical community and vice versa. I wish they would work more closely together instead of trying to trump one another. Simplistically, I feel that since my immune system is currently incapable of eradicating this cancer, herbs that can enhance my immune system function might present the possibility of increasing my body's ability to fight the cancer.
So, how do I answer my dilemna? I have decided to forgo the herbs for the first velcade cycle (2 weeks) to see what my numbers are while solely on velcade. Depending on the results, I may, or may not, restart the herbs. I will tell my doctor what I am doing. I am going to continue to take one of the products, which is a pulverized rice grain powder, as it really isn't an herb, but made from a natural food source. So, thanks for all the input and I'll keep you all informed. I really enjoyed all the thoughts and comments. What an interesting group you are! (and Arlene, thanks for the PDR reference, I am on it!) Love to all, Dan
Monday, January 16, 2006
Velcade--round one
As you all know, I received my first dose of velcade today. I now know how much people enjoy my analytical description of my treatment regimes (this is for you Patti Hallowell!) so here goes: blood work drawn, clinical trial coordinator pays a visit and explains once again what the routine will be, explains possible side effects, and invites questions, Dr. Rifkin conducts examination and I continue to look "beautiful", in his words, and then an IV, an antinausea drug, and a syringe full of velcade are given to me. A fifteen minute wait to make sure no adverse reaction and I get to go home, 1 1/4 hours after arriving. Not too bad. I return on Thursday for the second dose and will get 2 next week, then they analyze the blood and I get a week off before the second of four cycles begins. I didn't have many questions as Molly Johnston, the daughter of my good friend Gail, stopped by over the holidays and explained to all of us the cellular function of velcade and why it can be so good for myeloma patients. Molly has a degree in biology and is working in the research lab at National Jewish Hospital here in Denver. She had diagrams and velcade studies for us and even wrote everything out in laymen's terms for our nonscientific minds. Thank you Molly!
An interesting side note: one week ago I visited an herbalist on the recommendation of someone I met who has myeloma but claims he took it into remission after seeing this herbalist who prescribed a variety of herbs and vitamins. I purchased many such herbs on her recommendation and have diligently been taking them as prescribed this past week. I am feeling pretty good this week and have been able to resume my visits to the health club; I'm also over the crud. My white count today is 3.8, which is higher than it has been in more than a month and my neutrophil count is similarly up--both good signs. So I presented Dr. Rifkin with my list of herbs I'm taking and asked whether he thought I shouldn't be taking any of them. He says that since we don't know what they will do with the velcade I should stay away from them until we see how I respond to the velcade. We (Susan, Julia and I) are discussing whether I should follow that advice. I suspect they won't harm any positive results from the velcade but might wait a few weeks before resuming the herbal diet to see how I respond to the velcade. On the other hand, I am just as inclined to continue with them as I think they have helped restore my immune system function. Your thoughts will be appreciated.--but not necessarily followed--I always have been a contrarian.
Catherine returned to Boulder today and we miss her already, even though she will be visiting with us 2 or 3 times a week as she will be working part time at her new job in Cherry Creek. Julia returns to school this coming weekend and until then is planning numerous ski trips to our snow laden ski resorts. Susan continues to be the pillar of strength and hope for my continued health--when I returned home from the clinic today she had just completed saying a rosary for me. We all had a great holiday, laughed way too much, and enjoyed just being together.
Friends continue to show up on the blog, which always gives me a smile. I particularly loved hearing that one of my high school friends (yes, you Patti, once again) is teaching the daughter of another of my high school friends (that would be you Howie). Somehow it seems to me that justice would have been better served if Howie had, not only a sweet daughter, but also a son like himself to give him a bit of a challenge comparable to those challenges Howie gave his mom. On the other hand, nothing softens up us "tough guys" more than having a daughter or two to wrap us around their little fingers!
I continue to be optimistic for this coming year and extend my gratitude once again for all our many friends who have supported us through these past 10 months. My best to all of you. Love, Dan
An interesting side note: one week ago I visited an herbalist on the recommendation of someone I met who has myeloma but claims he took it into remission after seeing this herbalist who prescribed a variety of herbs and vitamins. I purchased many such herbs on her recommendation and have diligently been taking them as prescribed this past week. I am feeling pretty good this week and have been able to resume my visits to the health club; I'm also over the crud. My white count today is 3.8, which is higher than it has been in more than a month and my neutrophil count is similarly up--both good signs. So I presented Dr. Rifkin with my list of herbs I'm taking and asked whether he thought I shouldn't be taking any of them. He says that since we don't know what they will do with the velcade I should stay away from them until we see how I respond to the velcade. We (Susan, Julia and I) are discussing whether I should follow that advice. I suspect they won't harm any positive results from the velcade but might wait a few weeks before resuming the herbal diet to see how I respond to the velcade. On the other hand, I am just as inclined to continue with them as I think they have helped restore my immune system function. Your thoughts will be appreciated.--but not necessarily followed--I always have been a contrarian.
Catherine returned to Boulder today and we miss her already, even though she will be visiting with us 2 or 3 times a week as she will be working part time at her new job in Cherry Creek. Julia returns to school this coming weekend and until then is planning numerous ski trips to our snow laden ski resorts. Susan continues to be the pillar of strength and hope for my continued health--when I returned home from the clinic today she had just completed saying a rosary for me. We all had a great holiday, laughed way too much, and enjoyed just being together.
Friends continue to show up on the blog, which always gives me a smile. I particularly loved hearing that one of my high school friends (yes, you Patti, once again) is teaching the daughter of another of my high school friends (that would be you Howie). Somehow it seems to me that justice would have been better served if Howie had, not only a sweet daughter, but also a son like himself to give him a bit of a challenge comparable to those challenges Howie gave his mom. On the other hand, nothing softens up us "tough guys" more than having a daughter or two to wrap us around their little fingers!
I continue to be optimistic for this coming year and extend my gratitude once again for all our many friends who have supported us through these past 10 months. My best to all of you. Love, Dan
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