As we make our way through the helter-skelter maze of the Multiple Myeloma world we all need encouragement, laughter and a liberal dose of hope. In the middle of the dark, torrential downpour of MM, you will meet shining, bright-light people.
Today's S'Myeloma Award goes to caregiver extraordinaire, Lori Hudson Puente, from California. Read about her by clicking on the University of Arkansas for Medical Sciences' website in an interview entitled Myeloma Caregiver Recounts Rewarding Journey .
Lori, whom I met last month during a return trip to Little Rock, is an actively involved, dedicated caregiver to her husband Dave, a Myeloma patient at UAMS. She, like my wife and many other caregivers, are vital to a MM patient's good health and well being.
Do yourself a favor and visit her excellent blog and website Riding The Wave - Multiple Myeloma .
Thank you, Lori, for showing us how it is done!
Keep fighting out there in Myelomaville!
Friday, December 17, 2010
Thursday, December 16, 2010
Myeloma for a Season
Here is the recent article reprinted from The Myeloma Beacon in my monthly 'Sean’s Burgundy Thread' column.
You can read the article below or at the MB site: Myeloma for a Season
Sean’s Burgundy Thread: Myeloma For A Season
Hello, multiple myeloma friends!
I know that some of you Northern Hemisphere dwellers are getting hit hard with cold temperatures and a snowy, icy mix right about now. While I hope that you are safely weathering the deep freeze, I have to admit, without shame, that I am a Fall Guy. And sorry Mr. Shakespeare, I suffer no discontent in winter.
Now while some folks like to bask in the fun-in-the-sun days of summer and others are jazzed by the new growth of spring, I eagerly await the yearly metamorphosis from late summer into autumn and then autumn into the chillier months.
I long for the days here in the Ozarks to get shorter, when the air becomes cooler and crisper and fireplaces blaze with the burning of native woods. The wisps of smoke sneaking out of the neighbor’s chimneys signal to me that all inside are cozy and warm and well.
Having fractured many bones during my multiple myeloma journey, I do try not to fall prey to any inadvertent slips on the precariously slick walkways. My kids don’t mind my deliberate outdoors pace because I am a much easier target to hit during the family snowball fights! They’re only going to let their old dad get away with so much—even when I try to play the myeloma card for sympathy.
In our family, life in November and December is a whirlwind. The calendar is loaded with family birthdays, school programs and sporting events, job commitments, community projects, church responsibilities, and, of course, Thanksgiving, Christmas, and New Year’s Eve celebrations. We love every mind-numbing minute of it and wouldn’t do anything to interrupt our madcap fun.
But in 2008, multiple myeloma had no such qualms about doing its level best to bring our end-of-the-year family joy to a grinding halt.
That fall started out as usual. I was serving as the Creative Director for a successful group of companies, writing two original live show synopses on the side (I’ve been in the live entertainment business for nearly 30 years), and was generally keeping my nose to the proverbial grindstone.
In early November, my good friend, Marlyce, and I were producing a big black-tie event commemorating the 233rd anniversary of the United States Marine Corps. Lt. Col. Oliver North (USMC-ret) was the keynote speaker. Several hundred people were in attendance at the ceremony, dinner, and dance. And, most importantly, there were many active duty and retired Marines present. Some of the young leathernecks were to ship out overseas in the weeks to follow.
I had been suffering (I don’t toss around that word lightly) with an increasingly painful backache for a couple of weeks, but I just couldn’t spare a minute to get it looked at. Some of you multiple myeloma-ers know exactly what that backache is like. Some of you male multiple myeloma-ers know what putting off a visit to the doctor is like!
The extremely poignant and powerful event went off without a hitch, and everyone was feeling good. I, however, was in agony. I could barely stand. Ice, heat, Aleve (naproxen), sitting in a chair—none of them offered relief. Marlyce did absolutely everything she could do to get me through the evening.
I suppose my pride had overruled common sense, but what was I going to do? I was surrounded by courageous Marines, the youngest 19, the oldest 84, each of whom were willing to give their all, up to and including their lives, for me, my family, and our country. How was I not going to give them my very best?
It was the next day that I began the process of finding out what the heck was wrong with me and why my health seemed to change so drastically in just a few short weeks. Although I felt bad about canceling some morning meetings, I showed up without an appointment at my local physician’s clinic. My doctor wasn’t in, so his assistant took some x-rays, and we looked at the film together.
‘Do you have arthritis in your family?’ the assistant asked.
‘Yep, both of my parents lived with arthritis. Is it arthritis?’ I responded.
‘Maybe. It’s all up and down your spine. Hmmm. I’m not sure what’s going on in your neck. Any pain in your shoulder?’
‘Uh… yes. For about a year. I thought I’d torn my rotator cuff and was dealing with it until I could, well, deal with it. I can do this with my arm and this, but I can’t do this. Ouch!’
‘A year, huh? I’ll have the doctor take a look at these films and get back to you, okay Sean?’ his lips said. But his eyes, growing as big as saucers, said ‘You bonehead. You’ve got some problems.’
Over the next couple of weeks, I heard shocking words like cancer, shortened life span, incurable, and other terms that I’d never imagined associated with my name. And then I was introduced to the odd foreign language vocabulary of myeloma—which I called melanoma before I figured out that they were two different things. Plasmacytoma. Monoclonal. Immunofixation. Paraprotein. And so on. I wish that I’d studied harder in Latin class!
Long story short, I went into the Total Therapy 4 Phase 3 clinical trial at the University of Arkansas for Medical Sciences in Little Rock, Arkansas, in early December of 2008. I was to spend the better part of the next ten months at the Myeloma Institute undergoing rounds of high-dose chemotherapy, stem cell transplants, surviving blood clots and pulmonary embolisms, kyphoplasties to repair collapsed vertebrae, and more tests and blood work than I ever imagined I could handle.
Myeloma is the grinchiest of grinches. It stole a lot from me that fall and winter.
I missed the school musicals, band concerts, and basketball games. I missed the frenetic activity of a home filled with laughter, singing, rowdy kids, and rambunctious dogs. The Thanksgiving turkey and all of the trimmings were replaced by Ensure and soda crackers. There was to be no gathering with the family and friends for the holidays. No decorating the tree or snowball fights.
In between two doctor’s appointments on Christmas Day, my wife and I called our two daughters on the phone. They were staying with relatives 650 miles away in Chicago. We missed them terribly.
But as we gained our bearings, it eventually dawned on us that I was exactly where I needed to be. I was doing what I needed to be doing. I was immersed in a world where countless people were focused on helping me to get better—helping me to get back to my family.
I navigated through the rigors of treatment a day at a time. Those days turned into weeks, then into months, and before I knew it, it was nearing the fall of 2009 and I was back home. I still didn’t feel like my old self, but my new self was in complete response to treatment. My pain was much less than it had been a year earlier. I was surrounded by my loving family and friends.
And now fast-forward to today. I have a year of maintenance therapy behind me, and I am still in complete response. If I am feeling well enough, I never miss a school or church activity. I speak to groups about myeloma and offer support to newly diagnosed patients.
I am slowly getting back into the rhythm of normal life – something I couldn’t even imagine doing two years ago. I am blessed to be able to continue fighting the good fight, and I’m excited that there is more hope in the myeloma world now than ever before.
Myeloma takes so much from us. I’m busy taking it back. And by the way, I’m getting much better at dodging snowballs!
Warm wishes and peace to all of you this holiday season!
Sean
For in-depth information, news and features about multiple myeloma visit The Myeloma Beacon
You can read the article below or at the MB site: Myeloma for a Season
Hello, multiple myeloma friends!
I know that some of you Northern Hemisphere dwellers are getting hit hard with cold temperatures and a snowy, icy mix right about now. While I hope that you are safely weathering the deep freeze, I have to admit, without shame, that I am a Fall Guy. And sorry Mr. Shakespeare, I suffer no discontent in winter.
Now while some folks like to bask in the fun-in-the-sun days of summer and others are jazzed by the new growth of spring, I eagerly await the yearly metamorphosis from late summer into autumn and then autumn into the chillier months.
I long for the days here in the Ozarks to get shorter, when the air becomes cooler and crisper and fireplaces blaze with the burning of native woods. The wisps of smoke sneaking out of the neighbor’s chimneys signal to me that all inside are cozy and warm and well.
Having fractured many bones during my multiple myeloma journey, I do try not to fall prey to any inadvertent slips on the precariously slick walkways. My kids don’t mind my deliberate outdoors pace because I am a much easier target to hit during the family snowball fights! They’re only going to let their old dad get away with so much—even when I try to play the myeloma card for sympathy.
In our family, life in November and December is a whirlwind. The calendar is loaded with family birthdays, school programs and sporting events, job commitments, community projects, church responsibilities, and, of course, Thanksgiving, Christmas, and New Year’s Eve celebrations. We love every mind-numbing minute of it and wouldn’t do anything to interrupt our madcap fun.
But in 2008, multiple myeloma had no such qualms about doing its level best to bring our end-of-the-year family joy to a grinding halt.
That fall started out as usual. I was serving as the Creative Director for a successful group of companies, writing two original live show synopses on the side (I’ve been in the live entertainment business for nearly 30 years), and was generally keeping my nose to the proverbial grindstone.
In early November, my good friend, Marlyce, and I were producing a big black-tie event commemorating the 233rd anniversary of the United States Marine Corps. Lt. Col. Oliver North (USMC-ret) was the keynote speaker. Several hundred people were in attendance at the ceremony, dinner, and dance. And, most importantly, there were many active duty and retired Marines present. Some of the young leathernecks were to ship out overseas in the weeks to follow.
I had been suffering (I don’t toss around that word lightly) with an increasingly painful backache for a couple of weeks, but I just couldn’t spare a minute to get it looked at. Some of you multiple myeloma-ers know exactly what that backache is like. Some of you male multiple myeloma-ers know what putting off a visit to the doctor is like!
The extremely poignant and powerful event went off without a hitch, and everyone was feeling good. I, however, was in agony. I could barely stand. Ice, heat, Aleve (naproxen), sitting in a chair—none of them offered relief. Marlyce did absolutely everything she could do to get me through the evening.
I suppose my pride had overruled common sense, but what was I going to do? I was surrounded by courageous Marines, the youngest 19, the oldest 84, each of whom were willing to give their all, up to and including their lives, for me, my family, and our country. How was I not going to give them my very best?
It was the next day that I began the process of finding out what the heck was wrong with me and why my health seemed to change so drastically in just a few short weeks. Although I felt bad about canceling some morning meetings, I showed up without an appointment at my local physician’s clinic. My doctor wasn’t in, so his assistant took some x-rays, and we looked at the film together.
‘Do you have arthritis in your family?’ the assistant asked.
‘Yep, both of my parents lived with arthritis. Is it arthritis?’ I responded.
‘Maybe. It’s all up and down your spine. Hmmm. I’m not sure what’s going on in your neck. Any pain in your shoulder?’
‘Uh… yes. For about a year. I thought I’d torn my rotator cuff and was dealing with it until I could, well, deal with it. I can do this with my arm and this, but I can’t do this. Ouch!’
‘A year, huh? I’ll have the doctor take a look at these films and get back to you, okay Sean?’ his lips said. But his eyes, growing as big as saucers, said ‘You bonehead. You’ve got some problems.’
Over the next couple of weeks, I heard shocking words like cancer, shortened life span, incurable, and other terms that I’d never imagined associated with my name. And then I was introduced to the odd foreign language vocabulary of myeloma—which I called melanoma before I figured out that they were two different things. Plasmacytoma. Monoclonal. Immunofixation. Paraprotein. And so on. I wish that I’d studied harder in Latin class!
Long story short, I went into the Total Therapy 4 Phase 3 clinical trial at the University of Arkansas for Medical Sciences in Little Rock, Arkansas, in early December of 2008. I was to spend the better part of the next ten months at the Myeloma Institute undergoing rounds of high-dose chemotherapy, stem cell transplants, surviving blood clots and pulmonary embolisms, kyphoplasties to repair collapsed vertebrae, and more tests and blood work than I ever imagined I could handle.
Myeloma is the grinchiest of grinches. It stole a lot from me that fall and winter.
I missed the school musicals, band concerts, and basketball games. I missed the frenetic activity of a home filled with laughter, singing, rowdy kids, and rambunctious dogs. The Thanksgiving turkey and all of the trimmings were replaced by Ensure and soda crackers. There was to be no gathering with the family and friends for the holidays. No decorating the tree or snowball fights.
In between two doctor’s appointments on Christmas Day, my wife and I called our two daughters on the phone. They were staying with relatives 650 miles away in Chicago. We missed them terribly.
But as we gained our bearings, it eventually dawned on us that I was exactly where I needed to be. I was doing what I needed to be doing. I was immersed in a world where countless people were focused on helping me to get better—helping me to get back to my family.
I navigated through the rigors of treatment a day at a time. Those days turned into weeks, then into months, and before I knew it, it was nearing the fall of 2009 and I was back home. I still didn’t feel like my old self, but my new self was in complete response to treatment. My pain was much less than it had been a year earlier. I was surrounded by my loving family and friends.
And now fast-forward to today. I have a year of maintenance therapy behind me, and I am still in complete response. If I am feeling well enough, I never miss a school or church activity. I speak to groups about myeloma and offer support to newly diagnosed patients.
I am slowly getting back into the rhythm of normal life – something I couldn’t even imagine doing two years ago. I am blessed to be able to continue fighting the good fight, and I’m excited that there is more hope in the myeloma world now than ever before.
Myeloma takes so much from us. I’m busy taking it back. And by the way, I’m getting much better at dodging snowballs!
Warm wishes and peace to all of you this holiday season!
Sean
For in-depth information, news and features about multiple myeloma visit The Myeloma Beacon
Friday, November 12, 2010
Myeloma Maintenance Anniversary
Time flies when you’re having fun!
And time, as we Multiple Myeloma patients know all-too-well, is a precious commodity. We all want more of it! And some of us are picky enough to want a good quality of life, too.
I wouldn’t characterize fighting Multiple Myeloma as a fun-filled joyride to a picnic, but the two years that I’ve squared-off against this formidable foe have passed rather quickly. Maybe it’s my quirky attitude which has allowed me to see the highlights among the low lights.
Or maybe it’s the Oxycodone! Just kidding – it’s probably a combination of a lot of things…and the Oxycodone. Hey, ibuprofen hasn't worked well on my collapsed vertebrae and other broken bones!
If I’ve learned anything while being the protagonist in this chaotic, life-changing mess that I’ve gotten myself into, it’s been to grab hold of and celebrate the seemingly small, positive things that happen along the way.
Yesterday, I quietly commemorated my first annual anniversary of weekly Velcade® infusions, a 21 days per month regimen of Revlimid® capsules and once-per-week dexamethasone tablets taken to chase the Velcade®. This Velcade® infusion is administered with high hilarity and pomp and circumstance (and great skill) by the terrific oncology nurses at Skaggs Cancer Center in Branson, Missouri.
As Dr. Barlogie, Dr. Nair and the world-class MIRT team guided me into a complete response (CR) through high-dose chemotherapy and stem cell transplants, I knew that everything wasn’t a ‘done deal’. I saw the wisdom in continuing to batter MM with the VRD arsenal.
After roughly 16 or 17 months in CR, we continue to use this combination of novel chemotherapeutic maintenance agents, and quarterly infusions of the bisphosphonate Zometa®, to keep up the onslaught. These guys are trying to find a cure for my MM. I love them for it.
Whether you believe in the maintenance therapy scheme (some practitioners don’t), it has kept my M-spike at 0.0 and my side effects have been tolerable. While Revlimid® and Velcade® have lowered some of my blood counts, I generally feel good, not 100% like when I was 21 or 31 or 41 for crying out loud, but not too bad at 51. I have very mild neuropathy, not enough to dictate a dosage or medication change. What we in the Myeloma world don’t yet know is whether maintenance will impact my overall survival time.
Clinical trials and errors (that’s what I said!) will get us ever closer to the answers we seek about all aspects of Myeloma treatment. I’m happy to help, in my small way, to ensure that we keeping moving ahead.
I am grateful to the pharmaceutical companies and their researchers (and the FDA oversight!) that have developed the drugs I use in maintenance. Thanks to the Celgene Corporation for Revlimid®, Roxane Laboratories Inc. for the generic Dexamethasone and to Millennium: The Takeda Oncology Company for VELCADE®.
Do I wish the medicines were less expensive? Yep! Am I grateful to my insurance companies for working with me to be able to better afford these wonder drugs? Absolutely! Am I aware that they both want to make money? You bet! If they don’t make money, they don’t develop Myeloma drugs and cover these orphan cancers.
Anyway, one year of maintenance down, two more to go! Maybe by then we will have discovered that diet coke and pizza, consumed in exacting quantities, will provide a cure for MM. I want in on that trial. At least I hope that they don’t find that that magic novel gastric agent combo is what caused it!
Back to Little Rock next week for my latest three month check-up. MRI, bone & bone marrow biopsy, gene array, blood work and a Dr.'s appointment.. Maybe I'll run into some of you there.
Be good out in Myelomaville! Keep fighting!
Sean
And time, as we Multiple Myeloma patients know all-too-well, is a precious commodity. We all want more of it! And some of us are picky enough to want a good quality of life, too.
I wouldn’t characterize fighting Multiple Myeloma as a fun-filled joyride to a picnic, but the two years that I’ve squared-off against this formidable foe have passed rather quickly. Maybe it’s my quirky attitude which has allowed me to see the highlights among the low lights.
Or maybe it’s the Oxycodone! Just kidding – it’s probably a combination of a lot of things…and the Oxycodone. Hey, ibuprofen hasn't worked well on my collapsed vertebrae and other broken bones!
If I’ve learned anything while being the protagonist in this chaotic, life-changing mess that I’ve gotten myself into, it’s been to grab hold of and celebrate the seemingly small, positive things that happen along the way.
Yesterday, I quietly commemorated my first annual anniversary of weekly Velcade® infusions, a 21 days per month regimen of Revlimid® capsules and once-per-week dexamethasone tablets taken to chase the Velcade®. This Velcade® infusion is administered with high hilarity and pomp and circumstance (and great skill) by the terrific oncology nurses at Skaggs Cancer Center in Branson, Missouri.
As Dr. Barlogie, Dr. Nair and the world-class MIRT team guided me into a complete response (CR) through high-dose chemotherapy and stem cell transplants, I knew that everything wasn’t a ‘done deal’. I saw the wisdom in continuing to batter MM with the VRD arsenal.
After roughly 16 or 17 months in CR, we continue to use this combination of novel chemotherapeutic maintenance agents, and quarterly infusions of the bisphosphonate Zometa®, to keep up the onslaught. These guys are trying to find a cure for my MM. I love them for it.
Whether you believe in the maintenance therapy scheme (some practitioners don’t), it has kept my M-spike at 0.0 and my side effects have been tolerable. While Revlimid® and Velcade® have lowered some of my blood counts, I generally feel good, not 100% like when I was 21 or 31 or 41 for crying out loud, but not too bad at 51. I have very mild neuropathy, not enough to dictate a dosage or medication change. What we in the Myeloma world don’t yet know is whether maintenance will impact my overall survival time.
Clinical trials and errors (that’s what I said!) will get us ever closer to the answers we seek about all aspects of Myeloma treatment. I’m happy to help, in my small way, to ensure that we keeping moving ahead.
I am grateful to the pharmaceutical companies and their researchers (and the FDA oversight!) that have developed the drugs I use in maintenance. Thanks to the Celgene Corporation for Revlimid®, Roxane Laboratories Inc. for the generic Dexamethasone and to Millennium: The Takeda Oncology Company for VELCADE®.
Do I wish the medicines were less expensive? Yep! Am I grateful to my insurance companies for working with me to be able to better afford these wonder drugs? Absolutely! Am I aware that they both want to make money? You bet! If they don’t make money, they don’t develop Myeloma drugs and cover these orphan cancers.
Anyway, one year of maintenance down, two more to go! Maybe by then we will have discovered that diet coke and pizza, consumed in exacting quantities, will provide a cure for MM. I want in on that trial. At least I hope that they don’t find that that magic novel gastric agent combo is what caused it!
Back to Little Rock next week for my latest three month check-up. MRI, bone & bone marrow biopsy, gene array, blood work and a Dr.'s appointment.. Maybe I'll run into some of you there.
Be good out in Myelomaville! Keep fighting!
Sean
Tuesday, November 9, 2010
Myeloma Beacon Total Therapy Article
My Myeloma Beacon article thoughts on Total Therapy at UAMS.
http://www.myelomabeacon.com/news/2010/11/02/seans-burgundy-thread-my-adventures-through-total-therapy/
See you around in Myelomaville!
http://www.myelomabeacon.com/news/2010/11/02/seans-burgundy-thread-my-adventures-through-total-therapy/
See you around in Myelomaville!
Reliving the Old Days... Sort Of
I received a warm, beautifully written note via a Facebook personal message a couple of weeks ago.
John described his new home on the Atlantic coast of Florida and how well his kids were doing in their young work lives. Theresa, his wife, had taken early retirement from many years as an executive assistant with a marketing company and was looking forward to volunteering in their new community. John said that she was even prettier than she was in college.
He went on to express how sorry he was that I had been battling Multiple Myeloma. He looked MM up on the internet and he lamented how difficult it must be to face a situation like this, but if anyone could get through it, it would be me. I was always the strong one in the group.
He then recounted that I was the instigator of the practical jokes (remember the Sigma Nu party?) and good times we had in our undergraduate days at Florida State University and how much he had thought.....
WAIT!!
I didn't go to Florida State University! Come to think of it, John and Theresa's names didn't at all ring a bell. Sigma what? I know that chemo brain did interesting things to me, but as far as I know, I haven't suffered any amnesia or loss of identity.
I sent a message to John thanking him for his thoughtful note recounting the 'good old days' and how much fun it was to read, but...
I also gave him the good news that his friend from yesteryear, Sean Murray, most likely didn't have MM.
A couple of days later I got nice follow-up message from John and, apparently, Theresa thought that my picture looked a lot like John's old buddy, Sean. The mix-up was put squarely on the shoulders of a friend-of-a-friend-of-a-friend. John thinks that Theresa has too much time on her hands. A good laugh was shared by all!
The good news is that the other Sean Murray does, indeed, not have Myeloma. Looking forward to hearing those same words about this Sean Murray some day!
Stay connected out there in Myelomaville!
John described his new home on the Atlantic coast of Florida and how well his kids were doing in their young work lives. Theresa, his wife, had taken early retirement from many years as an executive assistant with a marketing company and was looking forward to volunteering in their new community. John said that she was even prettier than she was in college.
He went on to express how sorry he was that I had been battling Multiple Myeloma. He looked MM up on the internet and he lamented how difficult it must be to face a situation like this, but if anyone could get through it, it would be me. I was always the strong one in the group.
He then recounted that I was the instigator of the practical jokes (remember the Sigma Nu party?) and good times we had in our undergraduate days at Florida State University and how much he had thought.....
WAIT!!
I didn't go to Florida State University! Come to think of it, John and Theresa's names didn't at all ring a bell. Sigma what? I know that chemo brain did interesting things to me, but as far as I know, I haven't suffered any amnesia or loss of identity.
I sent a message to John thanking him for his thoughtful note recounting the 'good old days' and how much fun it was to read, but...
I also gave him the good news that his friend from yesteryear, Sean Murray, most likely didn't have MM.
A couple of days later I got nice follow-up message from John and, apparently, Theresa thought that my picture looked a lot like John's old buddy, Sean. The mix-up was put squarely on the shoulders of a friend-of-a-friend-of-a-friend. John thinks that Theresa has too much time on her hands. A good laugh was shared by all!
The good news is that the other Sean Murray does, indeed, not have Myeloma. Looking forward to hearing those same words about this Sean Murray some day!
Stay connected out there in Myelomaville!
Tuesday, October 5, 2010
Staying Connected While Living with Myeloma
Here's the link to my latest article in the Myeloma Beacon:
http://www.myelomabeacon.com/news/2010/10/05/seans-burgundy-thread-staying-connected-to-yourself-while-living-with-multiple-myeloma/
I've had a very busy stretch recently, looking forward to posting some more blog nonsense soon!
Be well!
Sean
http://www.myelomabeacon.com/news/2010/10/05/seans-burgundy-thread-staying-connected-to-yourself-while-living-with-multiple-myeloma/
I've had a very busy stretch recently, looking forward to posting some more blog nonsense soon!
Be well!
Sean
Thursday, September 9, 2010
Making Light of Myeloma
Over the last couple of days I have been 'bashed' by a blog reader, via e-mail, for speaking 'lightly' about Multiple Myeloma. Maybe it was the 'Hillbilly/ Moonshine / Revlimid Parody' or something else. I wanted to share this experience with you, not for your support, but just to let you see how some people approach life when MM is foisted upon them. Somehow, I thought that this day would come.
She wrote this to me: 'Don't you understand what a dreadful, destructive disease myeloma is?' 'Don't you realise that people are dying from this?' 'This is no topic for... (humor)..' And so on.
My response included the following thoughts:
Multiple Myeloma, as viewed in a vacuum, isn't funny. It is a destructive cancer. But there are many ways to deal with this diagnosis. I've made my choice. It may not be right for you and that's okay.
Yes, I know all-to-well the darkness of MM. I know first-hand the extreme physical and emotional pain it delivers. I know how devastatingly expensive fighting this disease can be.I am no stranger to the strain and stress MM puts upon my family, friends and all whom love me. I live daily with the medicine and their difficult side effects.I know the depression of not being able to work or to lift up my kids.
I have experienced the fear, confusion and uncertainty of where this is all heading. I have seen it in my mirror, on the loving face of my wife and on the faces of the hundreds of MM patients I've met in person.
I know what it's like to be a father of two young children, praying that I have an opportunity to see them grow up. Knowing them and being their dad has been one of the most powerful things in my life. Every day with them is a gift because I choose to see it that way. Would the thought of this blessing have been with me every day without being stricken with MM? Or would my busy life relegated such daily thoughts to the background?
I know the dreadful fact that I might leave my loving wife too early. I am a much better person for having known her, learned from her, loved her, and received her love and support. I want to grow old and cantankerous with her, dog-gone-it!
In no way do I hold myself to the standard of being a Myeloma 'expert', as you suggest. I am only an imperfect participant in my own personal journey. I struggle to understand all of the facets of the malady and the efforts of my team to vanquish it.
I reluctantly started this blog to communicate with my family and friends about MM and our family's battle against it. Nothing more. There are only 15 followers and a hundred or so visits to the page every day. One must not visit my site to feel that that they're doing what they need to do to successfully exhaust 'everything important about MM'. In the world of Myeloma, MyelomaYoureloma is not on the list as a 'must do.' And I am perfectly fine with this fact. I have benefited from the encouragement and loving support of those whom have contacted me through this blog. Many of them are MM patients or caregivers and they buoy my spirits in important ways they may never know.
Dear lady, I believe that you have the right to think differently than I do. And that you have the right to contact me with your thoughts. I appreciate the fact that you've taken the time to do so. I believe that you are in INTENSE pain because your father is battling this evil disease and you, sadly, can't cure it. I can't either. My wife can't snap her fingers and make this beast go away. But I do believe that it will eventually be cured - and my doctors do, too.
One of the most prominent physicians in the MM world took my hand in his and said 'If I don't screw this up, Sean, you will be given many years of good life.' To which I replied, 'Well, don't screw it up! There might be a bonus in this for you!' He laughed. The other doctor in the room also laughed. Ooops, there goes my attempt at humor again. I'm built that way.
You don't know me, but I refuse to surrender to Myeloma. I refuse to let it destroy my relationships and to steal the beauty, in the midst of the darkness, of the world around me. I refuse to succumb to the idea that I should be dying every day. I am much more interested in LIVING every day. I refuse to let MM change my light-hearted look at the world. I refuse to deny that I believe that God loves me and that I can handle what I've been dealt. I will continue, in my own way, to reach out to my MM warrior friends.
We are all connected through something I call the Burgundy Thread. Burgundy is the official color of Myeloma, or colour for my UK friends!, and in my imagination I see an invisible, unbreakable thread that connects us all together, whether or not we meet face to face. You are not alone. There are many people out there willing to offer you support, including me.
Your correspondence has moved me. Your choice, and your choice alone, is to keep visiting my sight and/or to keep in touch. I hope that you do. Lambaste me if you must - I can take it! I wish you the very best and will think about you and your father often as you move forward.
Sean
She wrote this to me: 'Don't you understand what a dreadful, destructive disease myeloma is?' 'Don't you realise that people are dying from this?' 'This is no topic for... (humor)..' And so on.
My response included the following thoughts:
Multiple Myeloma, as viewed in a vacuum, isn't funny. It is a destructive cancer. But there are many ways to deal with this diagnosis. I've made my choice. It may not be right for you and that's okay.
Yes, I know all-to-well the darkness of MM. I know first-hand the extreme physical and emotional pain it delivers. I know how devastatingly expensive fighting this disease can be.I am no stranger to the strain and stress MM puts upon my family, friends and all whom love me. I live daily with the medicine and their difficult side effects.I know the depression of not being able to work or to lift up my kids.
I have experienced the fear, confusion and uncertainty of where this is all heading. I have seen it in my mirror, on the loving face of my wife and on the faces of the hundreds of MM patients I've met in person.
I know what it's like to be a father of two young children, praying that I have an opportunity to see them grow up. Knowing them and being their dad has been one of the most powerful things in my life. Every day with them is a gift because I choose to see it that way. Would the thought of this blessing have been with me every day without being stricken with MM? Or would my busy life relegated such daily thoughts to the background?
I know the dreadful fact that I might leave my loving wife too early. I am a much better person for having known her, learned from her, loved her, and received her love and support. I want to grow old and cantankerous with her, dog-gone-it!
In no way do I hold myself to the standard of being a Myeloma 'expert', as you suggest. I am only an imperfect participant in my own personal journey. I struggle to understand all of the facets of the malady and the efforts of my team to vanquish it.
I reluctantly started this blog to communicate with my family and friends about MM and our family's battle against it. Nothing more. There are only 15 followers and a hundred or so visits to the page every day. One must not visit my site to feel that that they're doing what they need to do to successfully exhaust 'everything important about MM'. In the world of Myeloma, MyelomaYoureloma is not on the list as a 'must do.' And I am perfectly fine with this fact. I have benefited from the encouragement and loving support of those whom have contacted me through this blog. Many of them are MM patients or caregivers and they buoy my spirits in important ways they may never know.
Dear lady, I believe that you have the right to think differently than I do. And that you have the right to contact me with your thoughts. I appreciate the fact that you've taken the time to do so. I believe that you are in INTENSE pain because your father is battling this evil disease and you, sadly, can't cure it. I can't either. My wife can't snap her fingers and make this beast go away. But I do believe that it will eventually be cured - and my doctors do, too.
One of the most prominent physicians in the MM world took my hand in his and said 'If I don't screw this up, Sean, you will be given many years of good life.' To which I replied, 'Well, don't screw it up! There might be a bonus in this for you!' He laughed. The other doctor in the room also laughed. Ooops, there goes my attempt at humor again. I'm built that way.
You don't know me, but I refuse to surrender to Myeloma. I refuse to let it destroy my relationships and to steal the beauty, in the midst of the darkness, of the world around me. I refuse to succumb to the idea that I should be dying every day. I am much more interested in LIVING every day. I refuse to let MM change my light-hearted look at the world. I refuse to deny that I believe that God loves me and that I can handle what I've been dealt. I will continue, in my own way, to reach out to my MM warrior friends.
We are all connected through something I call the Burgundy Thread. Burgundy is the official color of Myeloma, or colour for my UK friends!, and in my imagination I see an invisible, unbreakable thread that connects us all together, whether or not we meet face to face. You are not alone. There are many people out there willing to offer you support, including me.
Your correspondence has moved me. Your choice, and your choice alone, is to keep visiting my sight and/or to keep in touch. I hope that you do. Lambaste me if you must - I can take it! I wish you the very best and will think about you and your father often as you move forward.
Sean
Thursday, August 26, 2010
Moonshine and Velcade
(OP- 8/26/10) Ozarky Hills, MO - In order to mitigate the high cost of Multiple Myeloma chemotherapeutic agents in this struggling economy, some of my Ozark native colleagues have stepped up to lend a hand by utilizing their considerably honed creative skills.
Local onkolojist and beverage distributor, Henry 'Doc' Hallow, MD (Moonshine Doctorate) and his twin brother, Lenny 'Happy' Hallow, have devised a way to distill generic bortezomib using an ages-old moonshine making and animal rendering approach.
Happy is also spearheading a process whereby lenalalomide tablets are stamped out using ingredients native to the local hills. The only drawback so far is that they have an overwhelming perfume d' skunk. It is also reported that it is difficult to keep the fine animal hairs out of the products. Oh, and then there's the side effect that it 'may cause permanent blindness.'
Billycade and Lennyalomide may not be covered by insurance or prevailing patent laws, but at 3 cents per serving, er.. dose, the price is right!
Calls to Millenium, Celgene, Blue Cross / Blue Shield and the FDA have not been returned.
Reporting from the back hills of Myelomaville, Sean Murray
** Disclaimer / Confession: Hillbilly is not a derisive term and I use it with deep respect, although within this parody it is utilized for cheap laughs. The folks (mostly of Scotish, Irish and Scotch/Irish ancestry) that I've met living here in the Ozarks for the last 16 years have been hard working, intelligent, honest, open and friendly. No doubt, a lot like you always and me on a good day!
Happy is also spearheading a process whereby lenalalomide tablets are stamped out using ingredients native to the local hills. The only drawback so far is that they have an overwhelming perfume d' skunk. It is also reported that it is difficult to keep the fine animal hairs out of the products. Oh, and then there's the side effect that it 'may cause permanent blindness.'
Billycade and Lennyalomide may not be covered by insurance or prevailing patent laws, but at 3 cents per serving, er.. dose, the price is right!
Calls to Millenium, Celgene, Blue Cross / Blue Shield and the FDA have not been returned.
Reporting from the back hills of Myelomaville, Sean Murray
** Disclaimer / Confession: Hillbilly is not a derisive term and I use it with deep respect, although within this parody it is utilized for cheap laughs. The folks (mostly of Scotish, Irish and Scotch/Irish ancestry) that I've met living here in the Ozarks for the last 16 years have been hard working, intelligent, honest, open and friendly. No doubt, a lot like you always and me on a good day!
Tuesday, August 24, 2010
People Are Talking!
This past weekend I took my 13 year old daughter and her friend to the movie theater to see Vampires Suck, a parody of Twilight, the latest-craze motion picture and book series. I couldn't bring myself to see the Vampire movie with 150 giggling teens, so I went to the new Angelina Jolie spy thriller, Salt, which began 20 minutes after the girls' flick.
Katie and her friend joined the Vampires' line and I queued up in the Salt line, 30 feet away from the girls. And that's when I became an eavesdropper par excellence.
'Isn't that the music teacher, Mrs. Murray's daughter?' the woman in front of me in the Salt line loudly asked her companion. 'Yes it is. I remember when they brought her here from Japan.' 'You mean China.' 'That's right, China.' 'She's very pretty.' 'Yes, she is. It's a shame about her dad.' 'Her dad? What happened?' 'He got some strange form of cancer or a brain tumor or something. I think he died last year. He was a lot older than her.' 'Oh, that is so sad. I hope that they are doing okay. You want some popcorn?'
'Excuse me' the first woman said to me, 'Would you save our place so that we can go to the concession line?' 'You bet!' The ladies returned just as the Vampire line started to move.
So many things were racing through my mind. The little devil on my shoulder said 'Have fun with this!' but the angel said 'Let it go!' As it turned out, I didn't have an opportunity to play any tricks.
As Katie moved passed me in her line, she said 'See you after the movie, Daddy!'
I thoroughly enjoyed watching the ladies' faces morph to brilliant shades of embarrassed crimson. Not another word was shared and they sat very far away from me during the movie.
For the record, Karen and I are the same age and I don't have a brain tumor. I think.
Katie and her friend joined the Vampires' line and I queued up in the Salt line, 30 feet away from the girls. And that's when I became an eavesdropper par excellence.
'Isn't that the music teacher, Mrs. Murray's daughter?' the woman in front of me in the Salt line loudly asked her companion. 'Yes it is. I remember when they brought her here from Japan.' 'You mean China.' 'That's right, China.' 'She's very pretty.' 'Yes, she is. It's a shame about her dad.' 'Her dad? What happened?' 'He got some strange form of cancer or a brain tumor or something. I think he died last year. He was a lot older than her.' 'Oh, that is so sad. I hope that they are doing okay. You want some popcorn?'
'Excuse me' the first woman said to me, 'Would you save our place so that we can go to the concession line?' 'You bet!' The ladies returned just as the Vampire line started to move.
So many things were racing through my mind. The little devil on my shoulder said 'Have fun with this!' but the angel said 'Let it go!' As it turned out, I didn't have an opportunity to play any tricks.
As Katie moved passed me in her line, she said 'See you after the movie, Daddy!'
I thoroughly enjoyed watching the ladies' faces morph to brilliant shades of embarrassed crimson. Not another word was shared and they sat very far away from me during the movie.
For the record, Karen and I are the same age and I don't have a brain tumor. I think.
Monday, August 23, 2010
Myeloma Vacation - Texas Style!
My wife, two daughters and I combined my latest 3 month Myeloma check-up in Little Rock, (where it was hot! hot! hot!) with a quick vacation trip to the even hotter, but always beautiful Texas city of San Antonio. After a scattered, everyone-everywhere summer, we wanted to enjoy a fun family event before school started back up.
Little Rock, AR I arrived for appointments at UAMS's Myeloma Institute for Research & Therapy (MIRT) on Wednesday morning where I underwent comprehensive blood tests, a full body MRI, and a bone biopsy with bone marrow aspiration, my 10th or so. The goal was to see what the last 3 months of maintenance therapy had done for me or to me.
Because the highly specialized MRI machine that I was assigned was needed by a critically ill patient, I was asked to come back later that evening for a second MRI session to complete the ‘DWIBBS’ portion of the imaging test.
I thought that I was being asked to come back later when the 'dweebs' get MRIs. A 'dweeb' is an American (I suppose) colloquial term for a geek or a nerd. I admire those very bright, go-get-‘em MRI techs, but why do they have to go and insult a sensitive patient like me? Clearing up the confusion, I learned that DWIBBS stands for Diffusion Weighted Imaging with Background Body Signal Suppression of the whole-body. Oh, DWIBBS! Why didn't they just say so? Go ahead and DWIBB this dweeb!
There were no appointments or tests on Thursday, so we ventured out near the William S. Clinton Presidential Library to tour the world headquarters of Heifer International, an amazing organization whose mission it is to work with communities around the globe to end hunger and poverty and to care for the earth. We have supported their efforts for several years, but had never visited with them.
Please go to www.heifer.org to see the tremendous work Heifer is doing. BTW, their corporate building is known as one of the 'greenest' office complexes on the planet.
One of the highlights of the trip happened Friday morning when had the pleasure of an all-too-brief visit with fellow MM blogger, Lina S. of www.lsmyeloma.blogspot.com/ . Lina is in her last consolidation chemo round at UAMS before heading home. I happened to catch her pre-neutropenic and in great spirits. I must tell you, it was inspiring to meet Lina and her mother. Both vibrant, bright, beautiful, take-charge MM warriors. I wish the Lina Team the very best that life has to bring.
Later that morning Karen and I met with Dr. Bijay Nair to discuss my test & procedure results. I can't begin to tell you how much we like Dr. Nair and Dr. Barlogie, MIRT’s founder. I will certainly do this in a future post, as I feel a well deserved S'Myeloma Award coming on!
Test Results Drum roll please! I’m grateful to report that the results show that there is no evidence of plasma cell Myeloma in my bone marrow aspirate and biopsy. Serum and Urine Immunofixation results relate that I'm still in remission, in complete response. Thanks to my entire team at UAMS and thank you God for giving me yet more time to wreak havoc and try the patience of those around me. It is good to have purpose!
Texas! After Friday’s appointment, we hopped into the mini-van and drove from Little Rock to Georgetown, TX to grab a hotel for a good night's sleep. We arose early in the morning and traveled the short distance to the Texas state capitol in Austin. After an impressive tour of the Capitol building, we got on the highway to continue our journey south to San Antonio.
On Monday, Rita took my 13 year old, Katie, shopping and then we rendezvoused back at Sea World for a couple of more hours of fun. For dinner we gorged ourselves at the casual eatery Rudy's, branded as the Worst Bar-B-Que in Texas. Rudy's was HIGH on the exhilaration scale, by the way! Good food! Then back to the hotel for the evening for more conversation, swimming and relaxation before saying our goodbyes.
I want to share that Doug and Rita's small family has endured several monumental health challenges with great courage and faith through the years. Spectacular family, fantastic kids, positive, active people. Their friendship is one of our most treasured gifts. It was healing to be with them.
Bright and early on Tuesday morning we said goodbye to Texas and began our 15 hour drive home to Missouri. Back to maintenance chemo, back to school, back to life with re-charged batteries.
Hope that you out there in Myelomaville have had some fun this summer. I'm thinking about and praying for you all! Keep fighting!
Sean
Karen, a 20+ year music teacher, and our 1st and 8th grade daughters would soon enough be bringing home reading assignments, creating quirky art projects, telling tales of how difficult it is in public school these days (and that comes from Karen!) and, no doubt, inadvertently exposing me to colonies of ne'r do well school kid germs.
But before all of that began, we needed one last summer fling before getting back to the grind. Don't tell them, but I love the grind. Last summer, I was in the middle of chemo and more chemo, stem cell transplants and surgeries. I'll take the daily grind over an infusion session any day!
When everything was expertly packed into our mini-van,, Karen would describe it as crammed, we left the sweltering Ozarks and arrived in Little Rock roughly 4 hours later - just in time for the girls to swim in the hotel pool. I didn't swim because ...uh...Velcade, Revlimid, and Dex don't mix with blistering sun. Right? Even if they do, don't tell Karen. This astute reasoning has gotten me out of push mowing my several acre lawn all summer. That and vertebral compression fractures. Why I didn’t think of Myeloma 15 years ago, I'll never know!
When everything was expertly packed into our mini-van,, Karen would describe it as crammed, we left the sweltering Ozarks and arrived in Little Rock roughly 4 hours later - just in time for the girls to swim in the hotel pool. I didn't swim because ...uh...Velcade, Revlimid, and Dex don't mix with blistering sun. Right? Even if they do, don't tell Karen. This astute reasoning has gotten me out of push mowing my several acre lawn all summer. That and vertebral compression fractures. Why I didn’t think of Myeloma 15 years ago, I'll never know!
Little Rock, AR I arrived for appointments at UAMS's Myeloma Institute for Research & Therapy (MIRT) on Wednesday morning where I underwent comprehensive blood tests, a full body MRI, and a bone biopsy with bone marrow aspiration, my 10th or so. The goal was to see what the last 3 months of maintenance therapy had done for me or to me.
Because the highly specialized MRI machine that I was assigned was needed by a critically ill patient, I was asked to come back later that evening for a second MRI session to complete the ‘DWIBBS’ portion of the imaging test.
I thought that I was being asked to come back later when the 'dweebs' get MRIs. A 'dweeb' is an American (I suppose) colloquial term for a geek or a nerd. I admire those very bright, go-get-‘em MRI techs, but why do they have to go and insult a sensitive patient like me? Clearing up the confusion, I learned that DWIBBS stands for Diffusion Weighted Imaging with Background Body Signal Suppression of the whole-body. Oh, DWIBBS! Why didn't they just say so? Go ahead and DWIBB this dweeb!
Please go to www.heifer.org to see the tremendous work Heifer is doing. BTW, their corporate building is known as one of the 'greenest' office complexes on the planet.
One of the highlights of the trip happened Friday morning when had the pleasure of an all-too-brief visit with fellow MM blogger, Lina S. of www.lsmyeloma.blogspot.com/ . Lina is in her last consolidation chemo round at UAMS before heading home. I happened to catch her pre-neutropenic and in great spirits. I must tell you, it was inspiring to meet Lina and her mother. Both vibrant, bright, beautiful, take-charge MM warriors. I wish the Lina Team the very best that life has to bring.
Later that morning Karen and I met with Dr. Bijay Nair to discuss my test & procedure results. I can't begin to tell you how much we like Dr. Nair and Dr. Barlogie, MIRT’s founder. I will certainly do this in a future post, as I feel a well deserved S'Myeloma Award coming on!
Test Results Drum roll please! I’m grateful to report that the results show that there is no evidence of plasma cell Myeloma in my bone marrow aspirate and biopsy. Serum and Urine Immunofixation results relate that I'm still in remission, in complete response. Thanks to my entire team at UAMS and thank you God for giving me yet more time to wreak havoc and try the patience of those around me. It is good to have purpose!
Texas! After Friday’s appointment, we hopped into the mini-van and drove from Little Rock to Georgetown, TX to grab a hotel for a good night's sleep. We arose early in the morning and traveled the short distance to the Texas state capitol in Austin. After an impressive tour of the Capitol building, we got on the highway to continue our journey south to San Antonio.
Doug and Rita, our longtime friends now living in S.A., joined us in the early evening at the hotel's busy outdoor pool. The girls all swam as Doug and I caught up and enjoyed a libation (that's a drink, for all of my friends back in the Ozarks) in the comfortable, covered area adjacent to the pool. Curiosity, and hunger, took a hold of us as Doug and I walked over to the Whataburger, a chain neither of us had ever tried. On the way we mused about how the brand name is inflected. Is it WHAT? a Burger (conveying disappointment or surprise ) or is it WHAT A BURGER! (the endpoint on the exhilaration scale). The burgers were fine and a Diet Coke chased down my $381.00 Revlimid pill.
On Sunday we drove to D & R's beautiful home and then headed to downtown San Antonio for some fun. We ate at a bustling Tex-Mex cafe on the River Walk, did some window shopping, toured the famed Alamo Mission (very interesting) and then bee-lined over to Sea World San Antonio.
Doug, Sea World’s V.P. of Entertainment, guided us to some of the park’s popular evening shows. Karen, Katie and Liz had never been to a Sea World before and they were absolutely mesmerized by the love and care the trainers and staff had for the whales, otters, sea lions, walruses, penguins, dolphins and the other beautiful creatures. Many of these particular animals can't thrive in the wild and, contrary to what some would have you believe, they are exceedingly well cared for at this world-class venue. The educational outreach is second to none.
On Sunday we drove to D & R's beautiful home and then headed to downtown San Antonio for some fun. We ate at a bustling Tex-Mex cafe on the River Walk, did some window shopping, toured the famed Alamo Mission (very interesting) and then bee-lined over to Sea World San Antonio.
Doug, Sea World’s V.P. of Entertainment, guided us to some of the park’s popular evening shows. Karen, Katie and Liz had never been to a Sea World before and they were absolutely mesmerized by the love and care the trainers and staff had for the whales, otters, sea lions, walruses, penguins, dolphins and the other beautiful creatures. Many of these particular animals can't thrive in the wild and, contrary to what some would have you believe, they are exceedingly well cared for at this world-class venue. The educational outreach is second to none.
On Monday, Rita took my 13 year old, Katie, shopping and then we rendezvoused back at Sea World for a couple of more hours of fun. For dinner we gorged ourselves at the casual eatery Rudy's, branded as the Worst Bar-B-Que in Texas. Rudy's was HIGH on the exhilaration scale, by the way! Good food! Then back to the hotel for the evening for more conversation, swimming and relaxation before saying our goodbyes.
I want to share that Doug and Rita's small family has endured several monumental health challenges with great courage and faith through the years. Spectacular family, fantastic kids, positive, active people. Their friendship is one of our most treasured gifts. It was healing to be with them.
Bright and early on Tuesday morning we said goodbye to Texas and began our 15 hour drive home to Missouri. Back to maintenance chemo, back to school, back to life with re-charged batteries.
Hope that you out there in Myelomaville have had some fun this summer. I'm thinking about and praying for you all! Keep fighting!
Sean
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