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
Friday, January 27, 2006
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
Thursday, January 05, 2006
A New Year's Update
Thank you to everyone for the fine new year's wishes, prayers, and good thoughts. Despite the disappointing news last month, I stay strong in my conviction of the power of prayer and postive affirmations. Keep us in your thoughts and prayers.
Although not much has happened I thought it time for a short update. As I had hoped, Susan and I have had the pleasure of spending much time with Julia and Catherine. Their long holiday break has given us time to just "hang out" together. They even watched the Orange Bowl and Rose Bowl with me, cheering for my favorites along with me. What a treat--and we have 2 more weeks together. In my reentry to the social world, i.e., getting out of the house, I have picked up "the crud". While not usually worthy of discussion, given my low white count (it continues to drop--probably due to the myeloma) I have few resources to fight the bugs. So, this holiday season has given me a few trips to the clinic/hospital, chest xrays and sinus CTs, and antibiotics. I am scheduled to start on the velcade on January 16th and am looking forward to getting some chemical help in fighting this disease--provided the "crud" is under control by then. Our best to you and we'll let you know how things are going once the velcade treatments start. Love, Dan
Although not much has happened I thought it time for a short update. As I had hoped, Susan and I have had the pleasure of spending much time with Julia and Catherine. Their long holiday break has given us time to just "hang out" together. They even watched the Orange Bowl and Rose Bowl with me, cheering for my favorites along with me. What a treat--and we have 2 more weeks together. In my reentry to the social world, i.e., getting out of the house, I have picked up "the crud". While not usually worthy of discussion, given my low white count (it continues to drop--probably due to the myeloma) I have few resources to fight the bugs. So, this holiday season has given me a few trips to the clinic/hospital, chest xrays and sinus CTs, and antibiotics. I am scheduled to start on the velcade on January 16th and am looking forward to getting some chemical help in fighting this disease--provided the "crud" is under control by then. Our best to you and we'll let you know how things are going once the velcade treatments start. Love, Dan
Antarctica
Hey Dan!!
There are people all over the world praying for you. My friends in
Antarctica made up a sign for you and sent it down with one of the
firemedics that flew to the South Pole. There she had her photo taken and
sent it to me yesterday. I need to get this to Ted so it can go in your
book. I hope you can read the sign. It says - "Get Well Soon Dan. Wishing
you all the best from the bottom of the world".
Very cool!
We love you.
P
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