We've decided to go to Arkansas so I can receive Dr. Barlogie's treatment protocol. We met with Dr. Rifkin on Monday and everything about that seemed to suggest that this is the way to go. We are waiting to receive my schedule from Arkansas and then we can finalize our plans. In the meantime, we've put our names in on a condo to rent. I'm thinking the start date is likely to be January 3rd. Julia will drive down with Susan and could stay for as long as a month, as she has some flexibility in her class schedule. We've already had many offers from friends to come down to Little Rock to help out for a long weekend and I'm thinking we're going to have to put together a schedule. On one level it seems to be quite a dramatic turn, and on another plane it all feels very natural.
I'll be much more diligent in my blogging and invite all of you to start posting comments so we can feel connected to all our friends.---just let us know what's going on in your lives. My recollection about my last transplant is that my blog is a large part of what kept me going----so let's do it again, and then again, just for grins!
I suspect there won't be a Christmas letter coming out this year, so you'll have to let this suffice. We wish you a very happy holiday season, and extend to you our deepest gratitude for everything you have done for us over these past few years. We are enriched and nourished by your support and friendship.
Love,
Dan
Wednesday, December 17, 2008
Sunday, December 14, 2008
Little Rock Bound?
We had our meeting on Friday with Dr. Barlogie. We went through the results of the multiple tests done during out last visit, the week before Thanksgiivng. No additional problem areas identified in the PET scan other than some gallstones. The bone marrow does not show heavy myeloma involvement (whatever that means). and the gene array has put me in the "low risk" category for the disease. My cancer levels are around 12% (compared to 68% when first diagnosed). I find the the labeling of this nastiness as "low risk" an oxymoron, but it refers to Barlogie's studies of treating people and how successful his treatment regime has been. Low risk brings a higher chance of remission. His recent studies show, when he is the initial treater, he gets 90% of his low risk patients into remission. 85% of those are in remission 4 years later. Becuase I have been previously treated I don't enjoy those same stats, but they are still good. So, what's the issue, you ask?
His treatment regime is rigorous, to say the least (brutal might be a more apt description). He proposes starting with 8 chemo drugs for a 3 week cycle, followed by further collection of my own stem cells, an auto transplant (my own cells), then a second auto transplant about 6 to 8 weeks later. This should take 3 to 4 months. Then 3 years of a 3 drug chemo regime as maintenance. He will require me to be in Little Rock for the 3 to 4 months of treatment, although suggested I might be able to go home a couple of times for a week or two.
We will see Rifkin, on Monday, to review the situation, although I am strongly leaning towards pursuing treatment with Barlogie. Of course, my greatest concern is my ability to handle this heavy chemo regime, but Susan will be by my side, keeping me going. We started looking at apartments this afternoon and will process that info over the weekend. If we decide to make the move, I expect we'll be moving to Little Rock in early January for a minimum of a 3 to 4 month stay. Many things to process, digest, and plan for in a short amount time---over the holidays, no less.
I struggle with how we will manage these months without the help of our many friends who have carried us through so many rough roads so far. But then we do have this blog, which Ted started before my last transplant in 2005, and we're already receiving offers of friends to come visit us, to help by giving Susan a break, and by just being there to support us. So, the journey continues. We love you all and continue to be full of gratitude for our many friends.
Dan
His treatment regime is rigorous, to say the least (brutal might be a more apt description). He proposes starting with 8 chemo drugs for a 3 week cycle, followed by further collection of my own stem cells, an auto transplant (my own cells), then a second auto transplant about 6 to 8 weeks later. This should take 3 to 4 months. Then 3 years of a 3 drug chemo regime as maintenance. He will require me to be in Little Rock for the 3 to 4 months of treatment, although suggested I might be able to go home a couple of times for a week or two.
We will see Rifkin, on Monday, to review the situation, although I am strongly leaning towards pursuing treatment with Barlogie. Of course, my greatest concern is my ability to handle this heavy chemo regime, but Susan will be by my side, keeping me going. We started looking at apartments this afternoon and will process that info over the weekend. If we decide to make the move, I expect we'll be moving to Little Rock in early January for a minimum of a 3 to 4 month stay. Many things to process, digest, and plan for in a short amount time---over the holidays, no less.
I struggle with how we will manage these months without the help of our many friends who have carried us through so many rough roads so far. But then we do have this blog, which Ted started before my last transplant in 2005, and we're already receiving offers of friends to come visit us, to help by giving Susan a break, and by just being there to support us. So, the journey continues. We love you all and continue to be full of gratitude for our many friends.
Dan
Monday, December 08, 2008
Preparation
What does one do to prepare for an upcoming regime of chemo followed by a transplant? Why, go skiing, of course. Cate, Julia and I hit the slopes this weekend to test out the old boards. Julia has kept at it these past years, but Cate and I have been slackards (4 years for me, 7 for Cate). The day was reminiscent of many days of skiing 10 to 15 years ago when I had to help with the girls' boots, carry their skis, etc. etc. Except this time roles were reversed. The girls helped me with my boots as the cement in my back apparently has limited some of my flexibility. Imagine that! Julia and her friend Bob carried my skis and Julia was the great protector, lecturing me about going too fast, not skiing "in control", and on and on. It seems those words of advice I imparted those many years ago did find a place in their memories and they brought them out to lecture me, of all things. Even though it had been 7 years for Cate she hasn't lost a step. She was a beautiful skier in high school and she hasn't lost a bit of her smooth form. Julia has progressed nicely and has a similar smooth parallel style. And I still look like a bulldog, or bowling ball barrelling down the slope. Nothing has changed except I ski a bit slower these days. We had a great time and I am now ready for the trip to Little Rock to get the news on the latest tests and the proposal for moving forward. I suppose skiing could be the metaphor for this journey: sometimes the terrain is steep; it can be a little scary; you might even fall down and hurt yourself; but smoother runs are ahead so dig those edges in, hang on, and ride it through. I'm ready. I'll check in with you later.
Love,
Dan
Thursday, November 27, 2008
No Easy Answers
First, a Happy Thanksgiving to all. This year our family is joined by my mother, her husband, Bob, my brother Tom and his daughter, Gina, for the celebration. We will also be joined by a few friends and there will be 14 at our table. Susan has pulled this dinner together in the wake of a difficult week last week. She continues to amaze me with her endless energy. We will gather round the table this year and once again give thanks for all of you, your love and support, and the blessings of another year past. Thank you.
And now for the news on the cancer front. I met with Rifkin yesterday to review the Arkansas approach and to wrest from him his views of Dr. Barlogie. We decided I might do better by myself rather than bringing the troops (Susan, Catherine and/or Julia). A good strategy, but given the tenor of the meeting I do wish Susan or the girls had been there, rather than having to rely upon my impressions. The meeting was casual, informative, and nonconfrontational. First, Barlogie has yet to make a recommendation, as he awaits info and data from the bone marrow biopsies. He sent a letter to Rifkin and as Rifkin said, this is the most noncommittal he has ever seen Barlogie. He suspects he is a bit perplexed as I am doing quite well despite 3 1/2 years of treatment, but still have evidence of the disease. I confronted Rifkin as to why he obviously disagreed with Barlogie's very aggressive approach and in essence he thinks the overall chemo regime is very very hard on people, can lead to long term permanent impairments, and has not yet proven to extend life any more than a less aggressive approach. Admittedly he gets more people into remission, but Rifkin said the studies are too young to yet establish this approach extends survival. Rifkin does believe a heavier chemo regime is probably in order for me, primarily because of the resistance I now have to velcade, but would probably approach it less dogmatically, i.e., if I experience too many side effects he would likely moderate the doses rather than push me on through the cycle. He also thinks at least one more transplant is in order, and maybe a second with one of my brother's stem cells. But, he seems most interested in hearing what Barlogie's recommendation is and going from there. He wisely noted that if a cure had been established, they would all be using the same approach. But since there is no cure, there is no agreement on the most effective treatment. Rifkin is willing to work in any capacity I want, whether it be as primary doctor, consulting doctor, secondary to Barlogie or whatever. In fact he said if I decided I wanted to go to Arkansas and then came back, I would always be welcome back as his patient. So, the meeting took the edge off and we will know, probably no later than December 12th, what Barlogie recommends. I will then meet with Rifkin and decide how to proceed. For now I am on a drug holiday, and happy for that.
Best to all of you and Happy Thanksgiving.
Love,
Dan
And now for the news on the cancer front. I met with Rifkin yesterday to review the Arkansas approach and to wrest from him his views of Dr. Barlogie. We decided I might do better by myself rather than bringing the troops (Susan, Catherine and/or Julia). A good strategy, but given the tenor of the meeting I do wish Susan or the girls had been there, rather than having to rely upon my impressions. The meeting was casual, informative, and nonconfrontational. First, Barlogie has yet to make a recommendation, as he awaits info and data from the bone marrow biopsies. He sent a letter to Rifkin and as Rifkin said, this is the most noncommittal he has ever seen Barlogie. He suspects he is a bit perplexed as I am doing quite well despite 3 1/2 years of treatment, but still have evidence of the disease. I confronted Rifkin as to why he obviously disagreed with Barlogie's very aggressive approach and in essence he thinks the overall chemo regime is very very hard on people, can lead to long term permanent impairments, and has not yet proven to extend life any more than a less aggressive approach. Admittedly he gets more people into remission, but Rifkin said the studies are too young to yet establish this approach extends survival. Rifkin does believe a heavier chemo regime is probably in order for me, primarily because of the resistance I now have to velcade, but would probably approach it less dogmatically, i.e., if I experience too many side effects he would likely moderate the doses rather than push me on through the cycle. He also thinks at least one more transplant is in order, and maybe a second with one of my brother's stem cells. But, he seems most interested in hearing what Barlogie's recommendation is and going from there. He wisely noted that if a cure had been established, they would all be using the same approach. But since there is no cure, there is no agreement on the most effective treatment. Rifkin is willing to work in any capacity I want, whether it be as primary doctor, consulting doctor, secondary to Barlogie or whatever. In fact he said if I decided I wanted to go to Arkansas and then came back, I would always be welcome back as his patient. So, the meeting took the edge off and we will know, probably no later than December 12th, what Barlogie recommends. I will then meet with Rifkin and decide how to proceed. For now I am on a drug holiday, and happy for that.
Best to all of you and Happy Thanksgiving.
Love,
Dan
Sunday, November 23, 2008
Little Rock Notes
We arrived home last night (Saturday) after 5 pretty busy days of testing in the Myeloma Institute at University of Arkansas. We thought we would be finished at the conclusion of our meeting with Dr. Bart Barlogie on Thursday afternoon, but during the meeting he ordered 3 more tests (2 more bone marrow biopsies and a PET scan), all compliments of the the Institute, since their cost was not covered by insurance. I had a complete workup from xrays, MRIs, bone scans, blood work, biopsies, etc. etc. My myeloma is not running rampant, but it is also not inactive. Catherine and Julia had fixed us dinner (mainly Julia) and we had a nice family dinner and discussed the heavy topic of Dad's likely treatment options (see below). It felt so good to be home and to be able to start to process some very complicated information.
Barlogie will be meeting with his team of doctors this coming week and we expect he will have a recommendation at that time as to treatment based upon the test results. We are scheduled for a revisit on December 12, although they were clear that if he thinks I should come back sooner, they will let me know. Suffice to say he does not mess around with this disease. He has been studying, researching and treating exlcusively myeloma for the past 20 years and I am confident he is the best myeloma specialist in the country, if not the world. He also has a reputation for being very aggressive with his treatment. Some in the medical community are critical of this, (probably including Dr. Rifkin) although one can't argue with his success. He achieves remission in a large percentage of his patients with his aggressive treatment. I think that the patient's "quality of life" is compromised during the treatment phase (which likely will include some heavy chemo, followed by one if not two transplants, and then another course of chemo, followed by maintenance chemo), but if remission can be achieved it seems to me like it's worth the sacrifice. Whether I will continue to treat here in Denver, or have to move to Little Rock is unknown at this point. My decision is complicated by the fact that I have a two well respected doctors and their egos have some play in all of this. I, on the other hand, just want to do what is best for my life. They may well have differing opinions on that.
And to end on a lighter note:
Barlogie referred to me early on as "chubby"; to which I replied: "better than mildy obese."
Susan has to return to Little Rock because all of her new friends will want to see her. She makes friends quicker than anyone I know.
The people of Little Rock are the nicest people I have ever met. They go out of their way to help you, to greet you, to put a smile on your face. This trait, in combination with Susan's ability to make friends, bodes well for any future visits.
If you're looking for a job opportunity, open a car rental shop in Little Rock. There were no rental cars available until Wednesday. None in the entire city.
We continue to be grateful for all of your love and support. I will post another note once I know what Barlogie is recommending.
Love,
Dan
Barlogie will be meeting with his team of doctors this coming week and we expect he will have a recommendation at that time as to treatment based upon the test results. We are scheduled for a revisit on December 12, although they were clear that if he thinks I should come back sooner, they will let me know. Suffice to say he does not mess around with this disease. He has been studying, researching and treating exlcusively myeloma for the past 20 years and I am confident he is the best myeloma specialist in the country, if not the world. He also has a reputation for being very aggressive with his treatment. Some in the medical community are critical of this, (probably including Dr. Rifkin) although one can't argue with his success. He achieves remission in a large percentage of his patients with his aggressive treatment. I think that the patient's "quality of life" is compromised during the treatment phase (which likely will include some heavy chemo, followed by one if not two transplants, and then another course of chemo, followed by maintenance chemo), but if remission can be achieved it seems to me like it's worth the sacrifice. Whether I will continue to treat here in Denver, or have to move to Little Rock is unknown at this point. My decision is complicated by the fact that I have a two well respected doctors and their egos have some play in all of this. I, on the other hand, just want to do what is best for my life. They may well have differing opinions on that.
And to end on a lighter note:
Barlogie referred to me early on as "chubby"; to which I replied: "better than mildy obese."
Susan has to return to Little Rock because all of her new friends will want to see her. She makes friends quicker than anyone I know.
The people of Little Rock are the nicest people I have ever met. They go out of their way to help you, to greet you, to put a smile on your face. This trait, in combination with Susan's ability to make friends, bodes well for any future visits.
If you're looking for a job opportunity, open a car rental shop in Little Rock. There were no rental cars available until Wednesday. None in the entire city.
We continue to be grateful for all of your love and support. I will post another note once I know what Barlogie is recommending.
Love,
Dan
Friday, November 14, 2008
And We're Off to Arkansas
We finalized our arrangements today to go to Arkansas for a second opinion regarding the path forward. We see Rifkin late Monday and head straight for the airport to go to Little Rock. I check in at the Myeloma Institute at 7 a.m. Tuesday morning to begin a series of tests for 2 days, after which I will have a consult with Dr. Barlogie, one of the world's leading experts in treating myeloma. Of course, Susan will be there to keep me in a positive frame of mind. She's the best! I couldn't imagine being on this journey without her. This contact with the Myeloma Institute was facilitated by Dr. Yosef Refaeli from Denver's National Jewish Hospital. The whole "adventure" makes me quite nervous, probably because I am fearful of what I might be told about my disease or future treatment. Not that I am unaware of the seriousness of this nastiness, but after some time of managing to keep it under control, I have become accustomed to blocking out those negative thoughts. I will, nonetheless, have put together a long list of questions for both of my doctors. And in 10 days I will report the answers to you.
Much love to you all.
Dan
Much love to you all.
Dan
Tuesday, November 11, 2008
Arkansas Connections
As I considered the narrowing options for my next chemo regime, I decided that seeking a second opinion might not be a bad idea. Fortunately, last month I met a research biologist at National Jewish Hospital here in Denver. He graciously agreed to meet me for lunch a few weeks ago, and even more graciously offered to put me in contact with the chief doctor at the Myeloma Institute at the University of Arkansas, which is the world's largest myeloma treatment center. The Institute was founded and funded by Sam Walton, of WalMart fame. Mr. Walton, it seems, had myeloma also. Anyway, I am now in communication with Dr. Barlogie's chief nurse and hope to have either a telephone or in person consult with him about his recommendations for my future treatment. I will then discuss those with Rifkin and we'll make a decision about how to proceed. I am scheduled to see Rifkin on Monday and he will have his recommendation for me at that time. I had hoped to have completed the consult with Dr. Barlogie by then, but things are proceeding a little more slowly on that front.
I've been off chemo for 3 weeks now and it is great. Finally, after 14 months of the steroid roller coaster and the velcade fatigue, I feel like I'm clearing out. It's a short respite, but most welcome.
I'll post something as soon as something develops.
Love to all,
Dan
I've been off chemo for 3 weeks now and it is great. Finally, after 14 months of the steroid roller coaster and the velcade fatigue, I feel like I'm clearing out. It's a short respite, but most welcome.
I'll post something as soon as something develops.
Love to all,
Dan
Thursday, October 30, 2008
Reevaluating
The visit with Rifkin on Monday would not rate as one of the better ones. My numbers are now 2435, up about 450 points from last month, and up almost 1000 in last 3 months. Time to change treatment. We reviewed all of my prior treatments, the success or failure of them, and the options going forward. There are not many new therapies currently available. I still don't qualify for the HSP 90 clinical trial (due to prostate cancer), and that seems to be the only place it is currently available. He seems to be leaning towards going back to the Revlimid/dexamethasone, which is part of what I was on last Fall--along with velcade. That regime brought my numbers down from 5500 to 1400 in about 3 months. Only this time we wouldn't use the velcade. The other option was Thalidomide and dexamethasone, which was my initial chemo in April 2005, but was extremely hard on me, although quite effective. Rifkin is going to Boston in a few days and will present my case to the myeloma specialists there to get their input and any new therapies. Nice to have a doctor that is so connected. He's giving me a few weeks off before the next treatment starts in order to let me detox from the past 14 months of chemo. (2 weeks to detox from 14 months???--whatever).
We also talked about transplants, and although that is not part of the discussion for the next line of therapy, I am expecting that if the next line is effective in bringing my numbers down, he will want to do another transplant. He sounded like he would want to use Mike or Tom's stem cells this time around as opposed to my cells. Using a sibling's cells is called a mini allo transplant. It doesn't wipe you out as much during the transplant phase, as I don't think they obliterate your bone marrow with high does chemo, like when they use your own stem cells. The difficult part of a mini allo transplant is the graft host disease, which is when your body fights the new immune system (just like when a person's body tries to reject an organ transplant). You want to have some graft host disease, but not too much.
It's hard to hear this news as I sure don't feel as sick as this sounds, but it's kind of like having to defuse a time bomb. We'd better do something or else. It's taken me a few days to process this as I must admit, despite its ups and downs, I've gotten used to this weekly chemo regime. Of course, fear wants to creep in and shake me. Fear that the chemo won't work; fear of complications with the transplant, etc. But then I think, we've been through all that--including both chemo and transplant not working, and I'm still here. So, with most challenges like this, I guess we take it one day at a time. In that vein, Susan and I took Tuesday off, did some shopping, went out to lunch, and spent the day together. We had a great day! That is, after all, what it's all about. I suggest each of you do the same with someone you love. You won't regret it.
Rifkin will give me the new plan on November 17th. I'll check in with you then. Until then, be sure to vote.
Much love to you all,
Dan
We also talked about transplants, and although that is not part of the discussion for the next line of therapy, I am expecting that if the next line is effective in bringing my numbers down, he will want to do another transplant. He sounded like he would want to use Mike or Tom's stem cells this time around as opposed to my cells. Using a sibling's cells is called a mini allo transplant. It doesn't wipe you out as much during the transplant phase, as I don't think they obliterate your bone marrow with high does chemo, like when they use your own stem cells. The difficult part of a mini allo transplant is the graft host disease, which is when your body fights the new immune system (just like when a person's body tries to reject an organ transplant). You want to have some graft host disease, but not too much.
It's hard to hear this news as I sure don't feel as sick as this sounds, but it's kind of like having to defuse a time bomb. We'd better do something or else. It's taken me a few days to process this as I must admit, despite its ups and downs, I've gotten used to this weekly chemo regime. Of course, fear wants to creep in and shake me. Fear that the chemo won't work; fear of complications with the transplant, etc. But then I think, we've been through all that--including both chemo and transplant not working, and I'm still here. So, with most challenges like this, I guess we take it one day at a time. In that vein, Susan and I took Tuesday off, did some shopping, went out to lunch, and spent the day together. We had a great day! That is, after all, what it's all about. I suggest each of you do the same with someone you love. You won't regret it.
Rifkin will give me the new plan on November 17th. I'll check in with you then. Until then, be sure to vote.
Much love to you all,
Dan
Tuesday, September 30, 2008
Light the Night Interview
Read the previous story first, then this interview of me on the day of the Walk. or do what you want, not that important.
9NEWS.com Colorado's Online News Leader Lighting up the night to help stop cancer
9NEWS.com Colorado's Online News Leader Lighting up the night to help stop cancer
Monday, September 29, 2008
Light the Night, Velcade Slipping
First, the good news. I have attached photos from the Walk. We had over 1oo people walking for Dan's Team and raised more than $30,000. I think Colorado will be close to its $1 million goal. Darin and Liz Schanker, who live next to the park, hosted a prewalk party that felt like most of the 100 people showed up. Then they made a most generous donation to Light the Night, after Darin and his partner, Kyle Bachus had already made a very generous donation from their law firm. Many of you were very generous and I have begun working through my thank yous. Oh, and don't forget Darin & Kyle had special T shirts made (the green ones in the walk), the Colorado Trial Lawyers made special shirts (the gray ones) and our neighbor had his own special shirt made---Yes Dan Can. Two former grade school buddies, Bob Agnew and Bill Ehli, surprised me by showing up at the party and the walk--they now live in Denver, but I had no idea they would be at the Walk. Such support we get!! I can't list everyone as it would be hundreds of you.
The next day Susan, my friend John Sadwith and I toured the lab of a Ph.D. researcher at Denver National Jewish Hospital, Yosef Rafaeli, who is doing Leukemia Society funded research on myeloma. Not only did we learn about his current research, but more about his funding woes. Not surprisingly the grant monies are getting more and more difficult to find. He showed us the various instruments they use (e.g., $250,000 microscopes, and $40,000 stem cell separators, etc. etc.) and let us observe the actual stem cells. He is trying to do some exciting things and offered to talk with me at any time about my treatment, and what other treatment might be available. Oh, how Dr. Rifkin is going to start dreading my visits. Not really. I'm sure he is very well versed in the drugs that are in clinical trials, although, because he has a medical practice, he may not be tuned into the lab work being done. Should prove interesting in light of what's going on in my blood.....read on.
Thank you everyone for your support, in spirit and in contributions. I continue to be humbled by the support we continue to receive from all of you. You keep us going. See above the a link to an interview I did with Denver's Channel 9 News that tells you how I feel about all of you. You're the best!!!
And now for the numbers news. Not so good. My Iggs have risen to 1984, (500 point rise in 2 months). My Myeloma Protein that roughly measures the degree of myeloma in the blood has risen from 1.1 to 1.7 over the last 2 months. It has been higher, but is has also been below 1. So, although I was not scheduled to see Rifkin today, I saw him in the hall, grabbed him and asked for 1 minute. He very graciously stepped over, told me he had seen the numbers, was not worried (he's only expressed worry a couple of times as far as I can remember (July/August 2005 and August/September 2007--when the Iggs were above 5000.) He said he has a variety of new treatments he is considering. His short term plan is to have me finish this cycle of velcade/steroids, maybe give me "some time off" (not further defined), and then do something completely new---also undefined. I won't have my next meeting with him until October 27 and won't get my numbers until November 3rd. Seems like a long wait--another opportunity to work on living in the moment and letting go of those worries for the future. Yeh, it can be hard at times. In the meantime, I will be shceduling that lunch with Dr. Rafaeli to find out what looks promising on the research and clinical trial fronts. It's nice to be connected--again thanks to friends, John Sadwith and Chuck Turner (the executive director of the Colorado Bar Assn, and whose son is working with Dr. Rafaeli.)
Briefly, a few moments to let you inside Suz and my heads today. These are hard days, although not unexpected. We shared a few watery eyes, but no tears. We're stronger than we've ever been, physically, emotionally, psychologically and spiritually. We have honed the tools for this next regime, whatever it might bring. We find ourselves bracing, working even harder to build just a little more strength, before I get hit with the heavier stuff (we both hit the gym and then drove to the ashram in Boulder for an evening meditation). Fear is circling but we've learned to keep it out most of the time. We spent more time together today and had not the slightest of disagreements---even about my driving! Even though we're bracing, we soften. Julia and Catherine are conveying strength and confidence, but their concern is evident. Of course, this is all based on past changes in my treatment which were more difficult for me to handle. Perhaps there is an effective nontoxic drug waiting to be used on me. So, we'll hold on to that thought.
I spoke in August to the membership of the Colorado Trial Lawyers Convention about living lives of consequence. When you realize it could all end rather soon, (as it can for all of us, but mostly we don't have to think about that) the look back at what you've been doing naturally is filtered through a different lens. I have tried to busy myself, when I had the energy, mostly with volunteer activities that matter to me, such as the Leukemia Society and the Trial Lawyers work for consumers (when you call in sick or drop the ball on a volunteer activity people usually don't get mad or threaten to fire you). I think I actually took too much on as I'm feeling more tired these days and with the new treatment coming on, will probably reduce those activities to some degree, but certainly not altogether--completing the Light the Night walk and the promo work for it should help. But more importantly, doing things I like for causes that are meaningful to me feels like a good way to spend my days. That will continue. We will continue.
Thank you for all your support. We love you all.
Dan
Wednesday, September 17, 2008
Light the Night Round Three
The Leukemia and Lymphoma Society's Light the Night Walk will take place next week in Denver's Washington Park, on Thursday, September 25th. This is my 3rd year of participation and LLS and my goals for this walk are higher than ever before. LLS has set a goal for curing blood cancers by 2015. This year for the Colorado LLS walks they have set a goal of raising $1 million. And I have set a goal (with a big push from my friend John Sadwith) of raising $50,000 and having 100 people walk for Dan's Team. Ambitious but achievable-----with your help. You can contribute, or sign up to walk, or both, by going to this site:
http://www.active.com/donate/ltnDenver/2285_dpattersonLTN
Once a year I get on an airplane for a getaway. Susan and I are currently in Florida for a week at the beach. I have continued my swimming and have managed to swim about a mile along the coast. It feels so good, including the 2 1/2 hour nap I need afterwards! As I think about it, I marvel at the recovery I have achieved with the help of so many of you. Two years ago, in 2006, we spent two weeks at our friends, the Coyles, in East Hampton. I had to travel with a surgical mask on my face and had great difficulty as the flight aggravated my back. I could not swim but rather could only wade in the waves. Last year was better, but I was still quite wiped out, as my cancer levels were very high and Dr. Rifkin held off on treatment just to give us a chance to have a getaway for our 25th wedding anniversary. I did some swimming, but as Susan likes to remind me, I spent most of the time on the sofa. And this year......even though I have been on chemo for one full year, and will be for the indeterminate future, I am seeing so much improvement. Of course, this is my week off from chemo, which helps tremendously with my energy levels, but I am encouraged by the strength I have built up over the last year. May it continue.
And, looping back to Light the Night......much of the money raised through that event goes to support medical research. In fact, I will soon be visiting the lab of one of the researchers who LLS funds, in Denver, at National Jewish Hospital, to learn more about the research he is doing on blood cancer. Many drugs given to myeloma patients lose their effectiveness. Every month I wait with great anticipation for my "numbers" report, hoping for the best and fearing the worst---that the velcade isn't working. The more drugs that are "on the shelf", the more effective our treatment will be. That is why I work so hard to raise money for this event. I am committed to seeing that cure in 2015!!!! Thank you again for your support of this cause. And for my Colorado friends who will be walking, there is a party at Darin and Liz Schanker's home, on Washington Park, 818 S. Franklin, at around 4:30 p.m. on Sept. 25, for everyone to congregate , eat and drink, and go to the walk together. Hope to see you there.
Love and Light,
Dan
http://www.active.com/donate/ltnDenver/2285_dpattersonLTN
Once a year I get on an airplane for a getaway. Susan and I are currently in Florida for a week at the beach. I have continued my swimming and have managed to swim about a mile along the coast. It feels so good, including the 2 1/2 hour nap I need afterwards! As I think about it, I marvel at the recovery I have achieved with the help of so many of you. Two years ago, in 2006, we spent two weeks at our friends, the Coyles, in East Hampton. I had to travel with a surgical mask on my face and had great difficulty as the flight aggravated my back. I could not swim but rather could only wade in the waves. Last year was better, but I was still quite wiped out, as my cancer levels were very high and Dr. Rifkin held off on treatment just to give us a chance to have a getaway for our 25th wedding anniversary. I did some swimming, but as Susan likes to remind me, I spent most of the time on the sofa. And this year......even though I have been on chemo for one full year, and will be for the indeterminate future, I am seeing so much improvement. Of course, this is my week off from chemo, which helps tremendously with my energy levels, but I am encouraged by the strength I have built up over the last year. May it continue.
And, looping back to Light the Night......much of the money raised through that event goes to support medical research. In fact, I will soon be visiting the lab of one of the researchers who LLS funds, in Denver, at National Jewish Hospital, to learn more about the research he is doing on blood cancer. Many drugs given to myeloma patients lose their effectiveness. Every month I wait with great anticipation for my "numbers" report, hoping for the best and fearing the worst---that the velcade isn't working. The more drugs that are "on the shelf", the more effective our treatment will be. That is why I work so hard to raise money for this event. I am committed to seeing that cure in 2015!!!! Thank you again for your support of this cause. And for my Colorado friends who will be walking, there is a party at Darin and Liz Schanker's home, on Washington Park, 818 S. Franklin, at around 4:30 p.m. on Sept. 25, for everyone to congregate , eat and drink, and go to the walk together. Hope to see you there.
Love and Light,
Dan
Monday, August 25, 2008
Numbers Rise But I'm Not Going There
Started this historic day in Denver in the infusion center (the Democratic National Convention is here). IGGs have moved to 1674, up from 1445. I am surprisingly unfazed. One other marker has gone down---beta 2 microglobulin is at 1.4, down from 1.7. The M protein (or M Spike), which measures the level of actual myeloma protein, was not available. I know that the IGGs can jump around a bit. I also know that in order for a "trend" to be identified, I need 3 points in a line. So this is but one point. Although fatigue is always an issue, life will go on.
Susan's cousin, Arlene, one of our regular bloggers, sent me a very interesting booklet called, "Year in Review---Multiple Myeloma: 2007-2008." It is most interesting because it sets forth the facts of numerous case studies and then asks four doctors how they would treat each patient. The four doctors are rarely in agreement. This booklet provides a very good overview of all treatments and these four doctors' views about when the different treatments should be used. My doc is clearly on top of all these therapies and, it appears to me, he is taking a conservative approach to my treatment, i.e., prescribing the fewest drugs and the lowest weekly dosage (only once a week). I am in complete agreement with his approach. Save the hammers for when the numbers run out of control. Thank you Arlene for sending this booklet.
Susan, Julia and I walked Denver's 16th Street Mall today and saw all the delegates, crazies, protestors, and heavily armed SWAT teams. Thousands of people milling around on the streets expressing their political views. It was great to see Democracy in action!!!
And finally, I'm told that if I mention John Sadwith's name one more time, he may win a prize on Google for blogger references. So here's to you John Sadwith, you are a great American.
I won't have another numbers report until early October. In the meantime, Susan and I will be taking a week's vacation in Florida; we had such a good time last year (although brother Mike won't be joining us this year). Until then,
Much love,
Dan
Susan's cousin, Arlene, one of our regular bloggers, sent me a very interesting booklet called, "Year in Review---Multiple Myeloma: 2007-2008." It is most interesting because it sets forth the facts of numerous case studies and then asks four doctors how they would treat each patient. The four doctors are rarely in agreement. This booklet provides a very good overview of all treatments and these four doctors' views about when the different treatments should be used. My doc is clearly on top of all these therapies and, it appears to me, he is taking a conservative approach to my treatment, i.e., prescribing the fewest drugs and the lowest weekly dosage (only once a week). I am in complete agreement with his approach. Save the hammers for when the numbers run out of control. Thank you Arlene for sending this booklet.
Susan, Julia and I walked Denver's 16th Street Mall today and saw all the delegates, crazies, protestors, and heavily armed SWAT teams. Thousands of people milling around on the streets expressing their political views. It was great to see Democracy in action!!!
And finally, I'm told that if I mention John Sadwith's name one more time, he may win a prize on Google for blogger references. So here's to you John Sadwith, you are a great American.
I won't have another numbers report until early October. In the meantime, Susan and I will be taking a week's vacation in Florida; we had such a good time last year (although brother Mike won't be joining us this year). Until then,
Much love,
Dan
Monday, August 18, 2008
Where Have I Been??
Hello everyone,
It does seem that my blogging has slowed considerably this summer. From my perspective, this is a good thing. I guess it means I am spending less time sitting in front of the computer. Yes, that is a good thing.
But first the health news. I saw Rifkin Monday morning, had blood drawn, and will get my myleoma numbers next week. He is very encouraged at my continue stability. I have pushed him over the past several months about getting a month or two break from the chemo. It has now been 11 straight months of chemo, and although I tolerate it fairly well, it does take a toll. I mean how many of us really want to ride a roller coaster every week for a year? No, not fun, even in an amusement park.
In past months Rifkin seemed open to a break, but not so much yesterday. I guess he was just humoring me. Anyway, he ducked and dodged his way around my questions and I quickly concluded that he was not interested in discussing the issue. He continues to want to wait for completion of the clinical trials of Heat Shock Protein 90 (HSP 90)--the nontoxic chemo. You may recall from past postings that I did not qualify for the clinical trial because of my prostate cancer. Interestingly and as further confirmation of my doctor being deeply connected to current research, recently I met a man about my age who is be treated at Mayo for his myeloma. He carefully selected his doctor, is quite wealthy, is independently funding research and urged me to at least consider seeing his doctor. I talked with Rifkin about that today and learned that, in fact, Rifkin is working with this same doctor at Mayo. They are working on the clinical trials and will copublish the results. I continue to know I am in good hands.
So, what have I been doing? My involvement in the Leukemia and Lymphoma Society (LLS) has increased as we gear up for the Light the Night Walk in Denver on September 25th at Washington Park. The link for my fundraising site is: http://www.active.com/donate/ltnDenver/2285_dpattersonLTN. You can contribute right now by clicking on the link. My goal has jumped from $10,000 my first year (2006)--we raised $13,000. In 2007 I set a goal of $13,000 and raised $25,000. So this year, naturally my goal is now $25,000. The generosity of the Colorado Trial Lawyers and John Sadwith, and Darin Schanker (outgoing president) in particular, are responsible for much of the money raised; but that is certainly not to diminish the contributions of the many of you have donated and I am grateful for any and all contributions. Any amounts are appreciated. This year the trial lawyers, through John's hard work and generosity, once again, have already raised more that $6000 by sponsoring a suite at a Nuggets game. (those donations haven't yet been logged on the site, but soon will). For those who live in Denver, even if you can't donate please consider walking with us that night. It is quite a scene as thousands of walkers parade around the lakes of Washington Park at twilight carrying lighted balloons, in support of all those touched by blood cancers.
The LLS has asked me to speak at 4 or 5 events over the past couple of months--to tell the story of my ongoing struggle with blood cancer. I also was asked to film a spot with Comcast that will run once a day in September in Colorado on CNN Headline News. The spot is a 4 minute interview about LLS and Light the Night, with a smattering of my own struggles. After the interview I went home and took a 2 hour nap. Susan asked why I was so tired and all I could say was, "I now know what it's like to be a movie star!" Just kidding, of course, as I can take a nap anytime, any place. No, don't worry, this has not gone to my head. The response of the audiences I speak to is quite moving, and I am optimistic that with my help Colorado will reach its goal of raising $1 million in its Light the Night Walks this year. The LLS has set a goal of finding a cure for blood cancer by 2015. Of course, I am deeply committed to that goal. I continue to be very grateful for your continued support of this cause.
And I was recently installed as the president of the Colorado Trial Lawyers Association. Despite my numerous attempts to resign over the past 3 years, the association rejected those resignations, and elected me president last week. I am the first non trial lawyer, or mediator, to serve in that position. A number of people cautioned me against it, arguing that this will hurt my mediation practice, which I really need, in order to keep my health insurance in place. But, having looked over the abyss and realizing that my number can come up at any time, I have carefully chosen to use whatever energy I have to be involved in those activities that have meaning to me. The list?----(1) Taking care of my health, (2) spending time with Susan, Catherine, Julia, my mom, brothers, sister, and friends, (3) working at mediation in order to keep my health insurance in place and (4) working for worthwhile causes, i.e., LLS and Colorado Trial Lawyers. Why CTLA you might ask? Because it stands for protecting the rights of individual rights and keeping the courts open to everyone, without regard to status, privilege, wealth, or lack of all three. As an association we support both Democrats and Republicans, as we judge our supporters on their philosophical support of our mission, as opposed to their political party affiliation. I've discovered the wonderful thing about doing volunteer work is that however much or little work I do, it is always appreciated and when I can't follow through or show up; no one gets mad at me and they are highly unlikely to fire me. The LLS is quite tolerant of me, as I regularly get lost trying to get to my new venue for my short speech. Rifkin rejects the notion that these difficulties are due to aging and unequivocally attributes it to chemo brain. I find small consolation in that news. Along with a few other strange behaviors my family thinks I've just gone further off the deep end. Oh well, I may be crazy but I'm still here!
So that's where I've been. I continue to meditate daily and exercise regularly, as well as take my daily dose of the magic juice. Stability continues along with some semblance of peace of mind despite the weekly steroid roller coaster. In spite of it all I find happiness during most hours of every day. I am so grateful for the love and support I receive from so many and feel that this terminal disease has opened my life to wonders I never would have experienced without having been forced to walk through the fire. Thank you again for staying with us. I am humbled by your generosity and support.
With much love,
Dan
It does seem that my blogging has slowed considerably this summer. From my perspective, this is a good thing. I guess it means I am spending less time sitting in front of the computer. Yes, that is a good thing.
But first the health news. I saw Rifkin Monday morning, had blood drawn, and will get my myleoma numbers next week. He is very encouraged at my continue stability. I have pushed him over the past several months about getting a month or two break from the chemo. It has now been 11 straight months of chemo, and although I tolerate it fairly well, it does take a toll. I mean how many of us really want to ride a roller coaster every week for a year? No, not fun, even in an amusement park.
In past months Rifkin seemed open to a break, but not so much yesterday. I guess he was just humoring me. Anyway, he ducked and dodged his way around my questions and I quickly concluded that he was not interested in discussing the issue. He continues to want to wait for completion of the clinical trials of Heat Shock Protein 90 (HSP 90)--the nontoxic chemo. You may recall from past postings that I did not qualify for the clinical trial because of my prostate cancer. Interestingly and as further confirmation of my doctor being deeply connected to current research, recently I met a man about my age who is be treated at Mayo for his myeloma. He carefully selected his doctor, is quite wealthy, is independently funding research and urged me to at least consider seeing his doctor. I talked with Rifkin about that today and learned that, in fact, Rifkin is working with this same doctor at Mayo. They are working on the clinical trials and will copublish the results. I continue to know I am in good hands.
So, what have I been doing? My involvement in the Leukemia and Lymphoma Society (LLS) has increased as we gear up for the Light the Night Walk in Denver on September 25th at Washington Park. The link for my fundraising site is: http://www.active.com/donate/ltnDenver/2285_dpattersonLTN. You can contribute right now by clicking on the link. My goal has jumped from $10,000 my first year (2006)--we raised $13,000. In 2007 I set a goal of $13,000 and raised $25,000. So this year, naturally my goal is now $25,000. The generosity of the Colorado Trial Lawyers and John Sadwith, and Darin Schanker (outgoing president) in particular, are responsible for much of the money raised; but that is certainly not to diminish the contributions of the many of you have donated and I am grateful for any and all contributions. Any amounts are appreciated. This year the trial lawyers, through John's hard work and generosity, once again, have already raised more that $6000 by sponsoring a suite at a Nuggets game. (those donations haven't yet been logged on the site, but soon will). For those who live in Denver, even if you can't donate please consider walking with us that night. It is quite a scene as thousands of walkers parade around the lakes of Washington Park at twilight carrying lighted balloons, in support of all those touched by blood cancers.
The LLS has asked me to speak at 4 or 5 events over the past couple of months--to tell the story of my ongoing struggle with blood cancer. I also was asked to film a spot with Comcast that will run once a day in September in Colorado on CNN Headline News. The spot is a 4 minute interview about LLS and Light the Night, with a smattering of my own struggles. After the interview I went home and took a 2 hour nap. Susan asked why I was so tired and all I could say was, "I now know what it's like to be a movie star!" Just kidding, of course, as I can take a nap anytime, any place. No, don't worry, this has not gone to my head. The response of the audiences I speak to is quite moving, and I am optimistic that with my help Colorado will reach its goal of raising $1 million in its Light the Night Walks this year. The LLS has set a goal of finding a cure for blood cancer by 2015. Of course, I am deeply committed to that goal. I continue to be very grateful for your continued support of this cause.
And I was recently installed as the president of the Colorado Trial Lawyers Association. Despite my numerous attempts to resign over the past 3 years, the association rejected those resignations, and elected me president last week. I am the first non trial lawyer, or mediator, to serve in that position. A number of people cautioned me against it, arguing that this will hurt my mediation practice, which I really need, in order to keep my health insurance in place. But, having looked over the abyss and realizing that my number can come up at any time, I have carefully chosen to use whatever energy I have to be involved in those activities that have meaning to me. The list?----(1) Taking care of my health, (2) spending time with Susan, Catherine, Julia, my mom, brothers, sister, and friends, (3) working at mediation in order to keep my health insurance in place and (4) working for worthwhile causes, i.e., LLS and Colorado Trial Lawyers. Why CTLA you might ask? Because it stands for protecting the rights of individual rights and keeping the courts open to everyone, without regard to status, privilege, wealth, or lack of all three. As an association we support both Democrats and Republicans, as we judge our supporters on their philosophical support of our mission, as opposed to their political party affiliation. I've discovered the wonderful thing about doing volunteer work is that however much or little work I do, it is always appreciated and when I can't follow through or show up; no one gets mad at me and they are highly unlikely to fire me. The LLS is quite tolerant of me, as I regularly get lost trying to get to my new venue for my short speech. Rifkin rejects the notion that these difficulties are due to aging and unequivocally attributes it to chemo brain. I find small consolation in that news. Along with a few other strange behaviors my family thinks I've just gone further off the deep end. Oh well, I may be crazy but I'm still here!
So that's where I've been. I continue to meditate daily and exercise regularly, as well as take my daily dose of the magic juice. Stability continues along with some semblance of peace of mind despite the weekly steroid roller coaster. In spite of it all I find happiness during most hours of every day. I am so grateful for the love and support I receive from so many and feel that this terminal disease has opened my life to wonders I never would have experienced without having been forced to walk through the fire. Thank you again for staying with us. I am humbled by your generosity and support.
With much love,
Dan
Tuesday, July 22, 2008
It's Hot
Temperatures in Denver have been near 100 off and on during the past week. I love it, but still wear my wool socks to bed as the feet are a bit numb and cold, even when its 101 degrees outside. But my tomatoes love it. I've found a green thumb for growing tomatoes, or perhaps just found the right spot for the plants. Whatever. We've already harvested four beautiful tomatoes and promptly ate them, while standing in the "garden"----the walkway from our patio to the alley.
Numbers continue to be good. IGGs dropped to 1455, down from 1500 last month. Other numbers are stable. It sure feels good to get that report and, despite the fact that we're now entering 8 months of maintenance, I still get nervous whenever I'm getting the "numbers" report. I'll keep drinking the magic elixir, even though Rifkin told me that the new velcade data is showing that the longer patients are on the maintenance regime, the more the numbers move down. (he doesn't know of the elixir).
Susan is in New York. A trip home with her brother for a last visit to Yankee stadium, a visit home for the Italian feast, returning to their old haunts, and spending time with Arlene and Jim Bell. They've had a great time and it seems wise I didn't join them as just listening to their daily activities tired me out.
The girls are fine and summer feels like its whizzing by. We've gone to some baseball games, enjoyed evenings on the patio, and hung out doing not much. I've been swimming and biking regularly. My swim is now up to a mile. I won't set any time records, but its a good workout, especially as I swim in an outdoor pool and bask in the sun as I swim. I think I'll start planning my winter escape now, as I never got that planned last year and, as you know, suffered through two bouts of flu and a little pneumonia. Getting out of town seems to me to be the best prevention for that.
Much love to all.
Dan
Numbers continue to be good. IGGs dropped to 1455, down from 1500 last month. Other numbers are stable. It sure feels good to get that report and, despite the fact that we're now entering 8 months of maintenance, I still get nervous whenever I'm getting the "numbers" report. I'll keep drinking the magic elixir, even though Rifkin told me that the new velcade data is showing that the longer patients are on the maintenance regime, the more the numbers move down. (he doesn't know of the elixir).
Susan is in New York. A trip home with her brother for a last visit to Yankee stadium, a visit home for the Italian feast, returning to their old haunts, and spending time with Arlene and Jim Bell. They've had a great time and it seems wise I didn't join them as just listening to their daily activities tired me out.
The girls are fine and summer feels like its whizzing by. We've gone to some baseball games, enjoyed evenings on the patio, and hung out doing not much. I've been swimming and biking regularly. My swim is now up to a mile. I won't set any time records, but its a good workout, especially as I swim in an outdoor pool and bask in the sun as I swim. I think I'll start planning my winter escape now, as I never got that planned last year and, as you know, suffered through two bouts of flu and a little pneumonia. Getting out of town seems to me to be the best prevention for that.
Much love to all.
Dan
Monday, June 16, 2008
Confessions of a Closet Nutritionist
Good report from the lab this morning. Igg's have dropped from 1749 last month to 1501 this month. All other measures of myeloma (M spike, beta 2 globulin, and kappa/lambda ratios) are almost identical to last month. There is still evidence of myeloma, as reflected in the M spike number, which should be 0, but is 1.2 (it has been as high as 2.7), but things continue to be stable. Spreading the steroids over 2 days has had little effect, other than I get a little more sleep on Mondays, but still am wiped out on Thursdays and Fridays as I crash off the chemo and/or the steroids. Oh well, we have a comfortable sofa in the basement for me to nap on those days.
So, what's with this "confessions of a closet nutritionist?" For the 2 weeks prior to the last blood draw I took a mystery nutrition drink a friend sent me. Without elaborating on the story behind it, he claimed it had some curative effects on some cancers, was made of amino acids, and urged me to drink it. The 4 quarts of clear liquid arrived in unmarked bottles, sitting in an unmarked box, with no instructions or ingredients. The only markings were his return address on the box. I let it sit on the counter for a couple of days, as I contemplated whether to "take the plunge" into the unknown. Then I decided to see if it would poison me. Having survived the sampling, I took a little more the next day. Still no adverse effects. So I went full bore and drank 12 ounces a day for 2 weeks. In the second week I noticed a definite increase in my energy, even managing to complete some to-do lists (a rare feat for me). Of course, I was a bit nervous about my numbers, worrying that maybe my mystery drink would interfere with my chemo, and have the opposite effect on my numbers. So, this month's report was good news. The numbers haven't changed much, but the increase in energy is encouraging and I think I'll ask for some more mystery drink. There are some who might call this "snake oil". But I just learned that clinical trials are going to start on this drink at the University of Utah within a few weeks. So they must have some legitimate studies to get it to that level.
Finally, this entire episode gives me (and now you) some insight into how much those of us with terminal illness would like our lives to change. Yes, we keep our chins up and endure, but make no mistake about it, when given even the slightest hope that maybe things could change for the better, we're likely to pursue that hope. We can't tell our doctors, because we know their advice is-- No, you can't take the chance with an unknown. Yet, they're giving us toxins with many unknown side effects. In my case, even those toxins bring no promise of a cure. So, we weigh the risks and often tell ourselves, maybe, just maybe, this will work for me. Delusional? Perhaps. But what do we have to lose? So, it seems I have not stumbled onto a cure; but I have found something to help with my fatigue. That's all for now: I've got a to-do list to finish!
P.S. Great movie tip: If the documentary "Bigger Stronger Faster" comes to your town, it's a must see. Not just because it involves one family's exploration of steroid use, but also because the director is Chris Bell, nephew of Arlene and Jim Bell. Arlene, as you know, is a frequent blogger, and is Susan's first cousin. In addition, the movie was featured at both the Tribeca and Sundance Film Festivals this year. (keep in mind that I am on corticosteroids, not anabolic steroids--hence I put on pounds of fat, not muscle)
Much love to all, and a belated Happy Father's day to all you Dads.
Dan
So, what's with this "confessions of a closet nutritionist?" For the 2 weeks prior to the last blood draw I took a mystery nutrition drink a friend sent me. Without elaborating on the story behind it, he claimed it had some curative effects on some cancers, was made of amino acids, and urged me to drink it. The 4 quarts of clear liquid arrived in unmarked bottles, sitting in an unmarked box, with no instructions or ingredients. The only markings were his return address on the box. I let it sit on the counter for a couple of days, as I contemplated whether to "take the plunge" into the unknown. Then I decided to see if it would poison me. Having survived the sampling, I took a little more the next day. Still no adverse effects. So I went full bore and drank 12 ounces a day for 2 weeks. In the second week I noticed a definite increase in my energy, even managing to complete some to-do lists (a rare feat for me). Of course, I was a bit nervous about my numbers, worrying that maybe my mystery drink would interfere with my chemo, and have the opposite effect on my numbers. So, this month's report was good news. The numbers haven't changed much, but the increase in energy is encouraging and I think I'll ask for some more mystery drink. There are some who might call this "snake oil". But I just learned that clinical trials are going to start on this drink at the University of Utah within a few weeks. So they must have some legitimate studies to get it to that level.
Finally, this entire episode gives me (and now you) some insight into how much those of us with terminal illness would like our lives to change. Yes, we keep our chins up and endure, but make no mistake about it, when given even the slightest hope that maybe things could change for the better, we're likely to pursue that hope. We can't tell our doctors, because we know their advice is-- No, you can't take the chance with an unknown. Yet, they're giving us toxins with many unknown side effects. In my case, even those toxins bring no promise of a cure. So, we weigh the risks and often tell ourselves, maybe, just maybe, this will work for me. Delusional? Perhaps. But what do we have to lose? So, it seems I have not stumbled onto a cure; but I have found something to help with my fatigue. That's all for now: I've got a to-do list to finish!
P.S. Great movie tip: If the documentary "Bigger Stronger Faster" comes to your town, it's a must see. Not just because it involves one family's exploration of steroid use, but also because the director is Chris Bell, nephew of Arlene and Jim Bell. Arlene, as you know, is a frequent blogger, and is Susan's first cousin. In addition, the movie was featured at both the Tribeca and Sundance Film Festivals this year. (keep in mind that I am on corticosteroids, not anabolic steroids--hence I put on pounds of fat, not muscle)
Much love to all, and a belated Happy Father's day to all you Dads.
Dan
Tuesday, June 10, 2008
Stealth Bloggers??
My posting last month that numbers would be delivered today was in error. I was a week off. I started my 6th cycle of maintenance yesterday and had my blood drawn for myeloma analysis, which results will be reported next Monday! My other blood counts were OK, although a bit down from the past month. No worries, yet, but not drifting in the right direction. Hoping its just some bouncing around, as these numbers will do occasionally.
On a brighter note, I've managed to push my swimming to 50 laps. When I started about a month ago, I struggled to get to 20, so we're definitely seeing some improvement. I wouldn't win any speed races--except maybe against my old friend Doug Kappel, who spent more time dating lifeguards than he did actually swimming---. I swim more for the pure enjoyment. I've been a swimmer my whole life, and spending 30 or 40 minutes swimming outside with the sun beating down (yes, I use my sunblock) is pure heaven.
Oh, and have you noticed that site meter, we have had over 1400 visitors since mid March when I installed that. Who are you people? Stealth bloggers, no doubt, who sign in during the middle of the night, and leave no messages!!!!!
More next week. My best to everyone.
Love,
Dan
On a brighter note, I've managed to push my swimming to 50 laps. When I started about a month ago, I struggled to get to 20, so we're definitely seeing some improvement. I wouldn't win any speed races--except maybe against my old friend Doug Kappel, who spent more time dating lifeguards than he did actually swimming---. I swim more for the pure enjoyment. I've been a swimmer my whole life, and spending 30 or 40 minutes swimming outside with the sun beating down (yes, I use my sunblock) is pure heaven.
Oh, and have you noticed that site meter, we have had over 1400 visitors since mid March when I installed that. Who are you people? Stealth bloggers, no doubt, who sign in during the middle of the night, and leave no messages!!!!!
More next week. My best to everyone.
Love,
Dan
Wednesday, May 28, 2008
Monday, May 19, 2008
Catching a Break
The memories of a series of disappointing news over the past couple of years are still a bit too fresh, which makes good news, even a small dose of it, very welcome. We had a nice visit with Rifkin today and reviewed my status, numbers, and discussed "the plan." The good news? I'm stable, holding my own, on a plateau, or however you want to describe numbers which don't change much, month to month. As for the plan going forward for someone in my situation, Rifkin's comment was, "there is no reason to potentially compromise the quality of life you currently have with the risks associated with a more rigorous treatment regime." Of course, no one knows how long I can maintain this plateau (can you say indefinitely?), but for now I know we are quite grateful for my current state of stability.
We also discussed the weekly roller coaster I go through with the steroids. As a result Rifkin advised that current studies support trying to reduce the toxicity of long term steroid treatment. Duh! I could've told them that, no study necessary! Rifkin thinks that I may well get the same result by spacing the steroids out over 2 days, rather than one major dose on Mondays. Does this mean I might actually get some sleep on Monday nights? We'll soon find out. Whatever the results, it will be easier on me than the current regime and for that I am also thankful. And Susan (who has to tolerate my 'roid rage and mood swings) is probably even more thankful. Maybe he's saved my marriage. (Just kidding. I'd never let Susan go.)
Julia is home for the summer, having completed her junior year at Colorado College. She is working for a Colorado vector control company that monitors and tries to control the mosquito population, primarily directed at controlling any West Nile virus. The company has many connections with the department of health and she will learn much of the groundwork used in controlling the spread of disease. This should be a good complement to her Public Health major. Besides, she gets to work alone, mostly outside, and will have her own truck (stick shift) to travel to different sites around the Denver metro area. She's excited. We think it's a stitch. Oh, and she will not be working with any pesticides.
That's the news this Monday. Next numbers will be reported on June 9.
Love,
Dan
We also discussed the weekly roller coaster I go through with the steroids. As a result Rifkin advised that current studies support trying to reduce the toxicity of long term steroid treatment. Duh! I could've told them that, no study necessary! Rifkin thinks that I may well get the same result by spacing the steroids out over 2 days, rather than one major dose on Mondays. Does this mean I might actually get some sleep on Monday nights? We'll soon find out. Whatever the results, it will be easier on me than the current regime and for that I am also thankful. And Susan (who has to tolerate my 'roid rage and mood swings) is probably even more thankful. Maybe he's saved my marriage. (Just kidding. I'd never let Susan go.)
Julia is home for the summer, having completed her junior year at Colorado College. She is working for a Colorado vector control company that monitors and tries to control the mosquito population, primarily directed at controlling any West Nile virus. The company has many connections with the department of health and she will learn much of the groundwork used in controlling the spread of disease. This should be a good complement to her Public Health major. Besides, she gets to work alone, mostly outside, and will have her own truck (stick shift) to travel to different sites around the Denver metro area. She's excited. We think it's a stitch. Oh, and she will not be working with any pesticides.
That's the news this Monday. Next numbers will be reported on June 9.
Love,
Dan
Monday, May 12, 2008
Stable Statistics Sprout a New Start
How's that for alliteration? Now, what does it mean? Numbers are about the same. Igg's up 100 points, to 1750, but nothing looks alarming. The M-protein (detects the presence of the myeloma protein) is 1.2--the same as last month. It has been as high as 2.5. If I were in remission it would be 0, but 1.2 is a good number for me. Other measures are about where they were last month, so I think it's safe to say I'm holding my own. Given that I missed one dose of chemo in the last cycle due to the flu/pneumonia, these numbers are just fine with me.
The new start refers to my resuming my swimming. I swam all last summer, when I was not on chemo, but haven't been back in the pool since restarting my chemo last September--just too tied most of the time. Feeling pretty good today, and with my white count in the normal range, I ventured back to the pool. While it felt good, it was disappointing to discover that I am a long way from the condition I was in last September. I was only able to swim 20 laps, which is about 25 to 30% of what I was swimming last August. Oh well, it'll give me something to work on. I have managed to drop 35 pounds over the winter, which should give me greater speed, don't you think? It is nice to have finally rid myself of the weight the steroids packed on me a couple of years ago. Fat boy no more! Although I'm still on the 'roids, I was deeply motivated to lose the weight---all prompted by Julia's comment last fall that I ran like a bowling ball. I'm not sure how a bowling ball runs, but the image disturbed me greatly. This makes me wonder if I swim like a bowling ball.
That's all the news here. Susan is pulling out of her bout with the crud. Julia returns from school tomorrow for the summer, and Catherine continues to keep a watchful eye on the financial markets. Have a great May and I'll probably check in with you with the next numbers in mid June, unless something exciting happens.
Love,
Dan
The new start refers to my resuming my swimming. I swam all last summer, when I was not on chemo, but haven't been back in the pool since restarting my chemo last September--just too tied most of the time. Feeling pretty good today, and with my white count in the normal range, I ventured back to the pool. While it felt good, it was disappointing to discover that I am a long way from the condition I was in last September. I was only able to swim 20 laps, which is about 25 to 30% of what I was swimming last August. Oh well, it'll give me something to work on. I have managed to drop 35 pounds over the winter, which should give me greater speed, don't you think? It is nice to have finally rid myself of the weight the steroids packed on me a couple of years ago. Fat boy no more! Although I'm still on the 'roids, I was deeply motivated to lose the weight---all prompted by Julia's comment last fall that I ran like a bowling ball. I'm not sure how a bowling ball runs, but the image disturbed me greatly. This makes me wonder if I swim like a bowling ball.
That's all the news here. Susan is pulling out of her bout with the crud. Julia returns from school tomorrow for the summer, and Catherine continues to keep a watchful eye on the financial markets. Have a great May and I'll probably check in with you with the next numbers in mid June, unless something exciting happens.
Love,
Dan
Monday, May 05, 2008
Statistics and Other Tidbits
The visit with Dr. Rifkin today was uneventful. My basic blood counts (white, red, platelets) are normal. We'll get myeloma numbers (IGGs) next week. I've still got a small amount of the crud that leveled me a few weeks ago, but it's on its way out and I feel fine. So they juiced me up with velcade and the steroids and I'm off and running for another week. After being off the 'roids for 3 weeks, I'm bracing for an all nighter tonight.
Soon after returning from Paris Susan came down with the same flu I had. She's been quite sick for the past 10 days and is finally moving about again, although still not 100%. We're tired of it!
But now for the real statistics. Every once in awhile I get a report on my blog. It has some very interesting statistics. For example, the blog has had 968 visitors since March 17. The visitors have been from 4 different continents (North America, South America, Europe and Asia) and 20 states in the U.S. with an average of 12 visitors per day. All this activity causes me to think I should make this blog more interesting. But, then when it was more "interesting" I was a lot sicker. I think we'll hope to keep it boring.
Finally, as I mentioned earlier, I've taken a position on the Executive Committee for the Leukemia and Lymphoma Society's Light the Night Walk in Denver. If you're wondering what to do with those Economic Stimulus Package checks that are coming in the mail, a donation to the Leukemia and Lymphoma Society would be a great way to stimulate our economy. I will be setting up a website as in years past. Checks can be sent to Leukemia and Lymphoma Society, Rocky Mountain Chapter, 5353 West Darmouth Ave., Suite 400, Denver, CO 80227. Please note on the check "Dan Patterson's Team". And thank you. I can't emphasize strongly enough how important the research is, for me and many others like me. In my visit today with Rifkin I asked how long he thought I could go on this velcade maintenance program. His response was he didn't know (of course). But more importantly he said, it would depend on what other drugs have cleared the clinical trials and are available. The Leukemia Society's funding of cancer research has been highly successful, including the application of Gleevec to chronic myeloid leukemia, which is estimated to have saved 20,000 lives already. Any amount of a contribution is greatly appreciated.
I'll let you know about the IGGs next week. May you all have a great week.
Love,
Dan
Soon after returning from Paris Susan came down with the same flu I had. She's been quite sick for the past 10 days and is finally moving about again, although still not 100%. We're tired of it!
But now for the real statistics. Every once in awhile I get a report on my blog. It has some very interesting statistics. For example, the blog has had 968 visitors since March 17. The visitors have been from 4 different continents (North America, South America, Europe and Asia) and 20 states in the U.S. with an average of 12 visitors per day. All this activity causes me to think I should make this blog more interesting. But, then when it was more "interesting" I was a lot sicker. I think we'll hope to keep it boring.
Finally, as I mentioned earlier, I've taken a position on the Executive Committee for the Leukemia and Lymphoma Society's Light the Night Walk in Denver. If you're wondering what to do with those Economic Stimulus Package checks that are coming in the mail, a donation to the Leukemia and Lymphoma Society would be a great way to stimulate our economy. I will be setting up a website as in years past. Checks can be sent to Leukemia and Lymphoma Society, Rocky Mountain Chapter, 5353 West Darmouth Ave., Suite 400, Denver, CO 80227. Please note on the check "Dan Patterson's Team". And thank you. I can't emphasize strongly enough how important the research is, for me and many others like me. In my visit today with Rifkin I asked how long he thought I could go on this velcade maintenance program. His response was he didn't know (of course). But more importantly he said, it would depend on what other drugs have cleared the clinical trials and are available. The Leukemia Society's funding of cancer research has been highly successful, including the application of Gleevec to chronic myeloid leukemia, which is estimated to have saved 20,000 lives already. Any amount of a contribution is greatly appreciated.
I'll let you know about the IGGs next week. May you all have a great week.
Love,
Dan
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