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
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