Just as a reminder, today is the 7th annual international celebration of Don't Slug Your Boss Day. Workers the world over will commemorate the festivities with a rousing 24 hour period of not slugging their bosses.
Wednesday, September 21, 2011
Tuesday, September 20, 2011
Not As I Pictured - A Film by John Kaplan
I was recently leafing through the Summer/Fall 2011 issue of the LIVESTRONG Quarterly magazine and ran across an interesting article brief in the Strong Stuff section entitled 'Through a Lens: What Survivorship Feels Like'.
The article highlighted Pulitzer Prize winning photographer John Kaplan's documentary film, Not As I Pictured , which chronicles the courageous, take-no-prisoners tale of John's battle with lymphoma. The up-close-and personal film is interspersed with numerous examples of his compelling photography, quick wit and gritty determination to beat his disease.
As a creative person, I particularly appreciate the style John has used to tell his inspiring story. Through the advent of today's social media, I was able to share my thoughts with him and he immediately got back in touch with me. He is the real deal, as they say, when he says that he wants to help others going through the cancer odyssey.
As an interesting aside, it turns out that John's oncologist and lymphoma specialist, Dr. Jay Lynch, is an old friend of mine from high school in Virginia. Together, John and Jay make a formidable pair.
Visit John's website, Not As I Pictured , to learn more about this project and to find out when the film will appear on your local PBS television station's schedule. You'll be glad that you did.
To my fellow MMers: if lymphoma wasn't enough, John is well acquainted with multiple myeloma, as his beloved dad bravely fought MM several years ago.
Stay well and stay connected out there in Myelomaville!
The article highlighted Pulitzer Prize winning photographer John Kaplan's documentary film, Not As I Pictured , which chronicles the courageous, take-no-prisoners tale of John's battle with lymphoma. The up-close-and personal film is interspersed with numerous examples of his compelling photography, quick wit and gritty determination to beat his disease.
As a creative person, I particularly appreciate the style John has used to tell his inspiring story. Through the advent of today's social media, I was able to share my thoughts with him and he immediately got back in touch with me. He is the real deal, as they say, when he says that he wants to help others going through the cancer odyssey.
As an interesting aside, it turns out that John's oncologist and lymphoma specialist, Dr. Jay Lynch, is an old friend of mine from high school in Virginia. Together, John and Jay make a formidable pair.
Visit John's website, Not As I Pictured , to learn more about this project and to find out when the film will appear on your local PBS television station's schedule. You'll be glad that you did.
To my fellow MMers: if lymphoma wasn't enough, John is well acquainted with multiple myeloma, as his beloved dad bravely fought MM several years ago.
Stay well and stay connected out there in Myelomaville!
Thursday, September 15, 2011
He Lives!
Yes, yes, I know. I have not been attending to my blog in an acceptable manner. Very busy. Very, very busy. And my dog ate my blog homework. And the 'M' key on my computer refused not to stick. How do you write Myeloma and Murray and Melphalan without a working M?
I promise to get on a more regular schedule soon. And when I do, you might just realize how nice it has been not to read my drivel. Maybe I should say dribble. Merriam-Webster defines dribble as 'issuing in small, sporadic bits'.
Anyway, here's a recent article of mine from the Myeloma Beacon .
Be well!
Sean N...I mean K....I mean M. M M M - that darned M key!
I promise to get on a more regular schedule soon. And when I do, you might just realize how nice it has been not to read my drivel. Maybe I should say dribble. Merriam-Webster defines dribble as 'issuing in small, sporadic bits'.
Anyway, here's a recent article of mine from the Myeloma Beacon .
Be well!
Sean N...I mean K....I mean M. M M M - that darned M key!
Sunday, June 12, 2011
Myeloma and May Winds
Here's a link to my recent Myeloma Beacon article referencing our good friends in Joplin, Missouri and the harrowing story of the massive, unprecedented tornado that struck the town on May 22. Just as in our battle with multiple myeloma, the people of Joplin face adversity with courage, strength and a deep faith.
Warm wishes to you all out in Myelomaville!
Warm wishes to you all out in Myelomaville!
Thursday, May 12, 2011
Sean's Myeloma Beacon column: Myeloma and Mother's Day
Here is a link to the Myeloma Beacon , where you will find information from last week's International Myeloma Workshop meetings in Paris (and lots of other great Multiple Myeloma news and resources) and my latest published patient-perspective column Sean's Burgundy Thread.
A copy of my column follows:
As this year’s Mother’s Day drew near, my thoughts turned toward the two ‘mothers’ whom have had a major influence on the way in which I have approached my battle with multiple myeloma – my mother, Eva, and the mother of my children, Karen.
After years of dealing with an array of perplexing symptoms initially, and incorrectly, attributed to arthritis, my mom, while in her mid 40s, was diagnosed with multiple sclerosis. We myeloma patients know all about tricky diagnoses.
In a matter of a few short years, multiple sclerosis, an autoimmune disease that affects the spinal cord and brain, transformed my mother from a bright, active, energetic woman in the prime of her life, into a whisper of herself, incapacitated and totally bedridden. It was devastating to see her razor-sharp mind being trapped in a body that increasingly betrayed her.
Through her arduous struggle, I was privileged to witness the strength and depth of my mother’s amazing spirit as she faced one medical challenge after another. She showed me how not to fall prey to self pity and how to live with joy and hope and humor, even within the bleakest of circumstances. I have no doubt that she was afraid as her disease progressed, but my mom would not allow herself to be ruled by fear.
Near the end of her life, communicating only through measured blinks and tiny smiles, she was still able to tell me how much she loved me. And that was enough for us. At fifty-five, she died much too young. I was in my twenties.
My father, a career member of the U.S. Air Force, took an early retirement to become my mother’s fulltime caregiver. In a storybook scenario, even though my parents had separated years before, my dad selflessly answered my mother’s call for help and set about to take care of the woman for whom he had fallen thirty years earlier.
My dad learned to become a skilled, confident advocate for my mother, one day at a time. I saw love and compassion in everything he did for her. He, like most devoted caregivers, was a hero. A dozen years after my mom left us, my dad succumbed after a brief battle with cancer. My brothers and I cared for him through his last months.
Little did I know that my parents’ courageous example of dealing with adversity would affect me in more profound ways than I could have imagined.
Fast forward twenty years and in one of life’s curious twists, I was diagnosed in my forties with my very own life-threatening illness. Of the many things about my mom that I would have gladly emulated, taking on a strange disease wasn’t one of them!
But my personal nemesis would not be multiple sclerosis, my mother’s foe. It would be multiple myeloma that pointed its ominous finger at me.
In the nearly three years that I have been sparring with multiple myeloma, I have endured rounds of high-dose chemotherapy, stem cell transplants, vertebral surgeries, broken bones, nausea, profound anemia, and more of the litany of tests, treatments, and troubles that we myeloma patients undergo. I am nearly halfway through a three-year cycle of weekly maintenance therapy designed to keep battering away at any hidden cancer I might be harboring. I am grateful to be in remission.
I recognize that I have been blessed with excellent health care, a committed medical team, and a dedicated group of caregivers, led by my wife, Karen.
Even in the middle of a dizzyingly paced life as a mother to our two daughters, an elementary school music teacher, community and church volunteer, and graduate student, Karen so thoroughly championed my cause that one of my doctors joked that with my ‘sickeningly’ positive outlook and Karen’s dogged attention to treatment details, myeloma is just going to get tired of dealing with us and skulk away. From his lips to God’s ears!
Karen has helped me navigate through the unforeseen quirks of living with myeloma. She is as quick with a smile and a laugh as she is with a hug to allay my frustration when things aren’t so easy. She isn’t afraid to admonish me to take my pills, eat more vegetables, and stop blaming Mr. Dex for my irascible behavior. There is no such thing as playing the cancer card with her. She’s one tough cookie!
Through all of the madness of myeloma, Karen has helped our family to maintain our balance and to keep moving forward as lovingly and faithfully as is possible.
I am fortunate that Karen is cut from the same caregiver cloth as my father was. I couldn’t be in better hands.
And if I can be half as brave and half as resilient as my mother was during her lifetime, I will make it through my days with myeloma with dignity, no matter the outcome.
Thank you, Mom, and thank you, Karen. Happy Mother’s Day!
And thank you to all of those incredibly dedicated caregivers out across Myelomaville!
___________
A big thank you to Boris, Julie and all at the Myeloma Beacon for their commitment to help patients and caregivers better understand and face the challenge of living with Multiple Myeloma!
As always, be good and stay strong out there in Myelomaville - not necessarily in that order!
Sean
A copy of my column follows:
As this year’s Mother’s Day drew near, my thoughts turned toward the two ‘mothers’ whom have had a major influence on the way in which I have approached my battle with multiple myeloma – my mother, Eva, and the mother of my children, Karen.
After years of dealing with an array of perplexing symptoms initially, and incorrectly, attributed to arthritis, my mom, while in her mid 40s, was diagnosed with multiple sclerosis. We myeloma patients know all about tricky diagnoses.
In a matter of a few short years, multiple sclerosis, an autoimmune disease that affects the spinal cord and brain, transformed my mother from a bright, active, energetic woman in the prime of her life, into a whisper of herself, incapacitated and totally bedridden. It was devastating to see her razor-sharp mind being trapped in a body that increasingly betrayed her.
Through her arduous struggle, I was privileged to witness the strength and depth of my mother’s amazing spirit as she faced one medical challenge after another. She showed me how not to fall prey to self pity and how to live with joy and hope and humor, even within the bleakest of circumstances. I have no doubt that she was afraid as her disease progressed, but my mom would not allow herself to be ruled by fear.
Near the end of her life, communicating only through measured blinks and tiny smiles, she was still able to tell me how much she loved me. And that was enough for us. At fifty-five, she died much too young. I was in my twenties.
My father, a career member of the U.S. Air Force, took an early retirement to become my mother’s fulltime caregiver. In a storybook scenario, even though my parents had separated years before, my dad selflessly answered my mother’s call for help and set about to take care of the woman for whom he had fallen thirty years earlier.
My dad learned to become a skilled, confident advocate for my mother, one day at a time. I saw love and compassion in everything he did for her. He, like most devoted caregivers, was a hero. A dozen years after my mom left us, my dad succumbed after a brief battle with cancer. My brothers and I cared for him through his last months.
Little did I know that my parents’ courageous example of dealing with adversity would affect me in more profound ways than I could have imagined.
Fast forward twenty years and in one of life’s curious twists, I was diagnosed in my forties with my very own life-threatening illness. Of the many things about my mom that I would have gladly emulated, taking on a strange disease wasn’t one of them!
But my personal nemesis would not be multiple sclerosis, my mother’s foe. It would be multiple myeloma that pointed its ominous finger at me.
In the nearly three years that I have been sparring with multiple myeloma, I have endured rounds of high-dose chemotherapy, stem cell transplants, vertebral surgeries, broken bones, nausea, profound anemia, and more of the litany of tests, treatments, and troubles that we myeloma patients undergo. I am nearly halfway through a three-year cycle of weekly maintenance therapy designed to keep battering away at any hidden cancer I might be harboring. I am grateful to be in remission.
I recognize that I have been blessed with excellent health care, a committed medical team, and a dedicated group of caregivers, led by my wife, Karen.
Even in the middle of a dizzyingly paced life as a mother to our two daughters, an elementary school music teacher, community and church volunteer, and graduate student, Karen so thoroughly championed my cause that one of my doctors joked that with my ‘sickeningly’ positive outlook and Karen’s dogged attention to treatment details, myeloma is just going to get tired of dealing with us and skulk away. From his lips to God’s ears!
Karen has helped me navigate through the unforeseen quirks of living with myeloma. She is as quick with a smile and a laugh as she is with a hug to allay my frustration when things aren’t so easy. She isn’t afraid to admonish me to take my pills, eat more vegetables, and stop blaming Mr. Dex for my irascible behavior. There is no such thing as playing the cancer card with her. She’s one tough cookie!
Through all of the madness of myeloma, Karen has helped our family to maintain our balance and to keep moving forward as lovingly and faithfully as is possible.
I am fortunate that Karen is cut from the same caregiver cloth as my father was. I couldn’t be in better hands.
And if I can be half as brave and half as resilient as my mother was during her lifetime, I will make it through my days with myeloma with dignity, no matter the outcome.
Thank you, Mom, and thank you, Karen. Happy Mother’s Day!
And thank you to all of those incredibly dedicated caregivers out across Myelomaville!
___________
A big thank you to Boris, Julie and all at the Myeloma Beacon for their commitment to help patients and caregivers better understand and face the challenge of living with Multiple Myeloma!
As always, be good and stay strong out there in Myelomaville - not necessarily in that order!
Sean
Thursday, May 5, 2011
News from the Paris Meetings at the International Myeloma Workshop
Bonjour to all of you out in Myelomaville! That means 'hello!' to my friends down at the 5 & Dime.
Thanks to the dedicated folks at the International Myeloma Foundation, you can watch an exciting, hopeful, helpful internet video presentation from the 2011 International Myeloma Workshop meetings taking place in Paris this week. C'est magnifique!
This presentation addresses some of the 'novel agents' (cool new drugs) being used in the war against Multiple Myeloma.
If you have Myeloma, or you know and love someone battling this difficult blood/ bone marrow cancer, by all means, watch this presentation.
And as always, check the Myeloma Beacon for the latest news, resources and information breaking in greater Myelomaville, where amazing things have happened in the last 10 years!
You ain't gettin' rid of me yet! Au revoir! That means 'see ya;' to the guys still hanging around the 5 & Dime.
Sean
Thanks to the dedicated folks at the International Myeloma Foundation, you can watch an exciting, hopeful, helpful internet video presentation from the 2011 International Myeloma Workshop meetings taking place in Paris this week. C'est magnifique!
This presentation addresses some of the 'novel agents' (cool new drugs) being used in the war against Multiple Myeloma.
If you have Myeloma, or you know and love someone battling this difficult blood/ bone marrow cancer, by all means, watch this presentation.
And as always, check the Myeloma Beacon for the latest news, resources and information breaking in greater Myelomaville, where amazing things have happened in the last 10 years!
You ain't gettin' rid of me yet! Au revoir! That means 'see ya;' to the guys still hanging around the 5 & Dime.
Sean
Thursday, March 10, 2011
I Still Believe in Miracles... How About You?
Would you please take a brief moment to read this article from Holt's website? Your heart will be moved. Please pass this link on to someone whom might welcome it. You never know when someone you know, or someone they know, can help move a mountain.
THANK YOU out there in Myelomaville!!
Thursday, March 3, 2011
Some of My Memorable Myeloma Moments
Here’s a short list of some of my adventures while being treated for Multiple Myeloma. Best enjoyed with a bit of truth and grain of salt!
Note: Jugular port not pictured- thank goodness., The last time I did that, I had to apologize to my surgeons, the port maker, my grandmother, the FDA, the AMA, the IMF, the Vampires Union, the CDC, and on.
2. Trying to explain to my nosey neighbor that Myeloma is a 'monoclonal' disease and hearing him say: ‘Thank God! You just have a bad case of Mono! Don’t worry, Murray, you’ll have your 2 acre back yard up to community standards in no time!’ Fat chance. I'll be sipping my Port, instead. On non-Velcade days, of course.
3. Hearing the perky, newly matriculated student nurse say: ‘This is my first I.V.! We’re both going to remember this one!’
4. The time when I went in for a two-hour, full-body MRI and the Taiwan-born MRI imaging tech asked me to remove my silver ‘Made in China’ pendant that I picked up during my last visit to The People’s Republic. Curious, I asked how she knew my ‘Double Happiness’ character jewelry piece (I’ve always loved that saying!) was made in China. She told me: ‘Because the boy necklace say ‘Made in China.’ $2.89 doesn’t buy what it used to.
5. Discovering that the highly toxic chemotherapeutic agent doxorubicin, known as the Red Devil, doesn’t taste like cherry Kool Aid. Don’t ask. But I did end up thinking that that big Kool Aid Pitcher Freak was trying to break down my front door.
6. Trying to use the ‘Smiley Face Pain Rating System’ when describing my myeloma-caused vertebral pain that lies somewhere between the discomfort of a slow, over-stuffed, buffet-bound Wildebeest, stumbling through a pride of ravenous Lions and that of a red-hot fondue skewer being indiscriminately pressed into my exposed spinal cord. ‘So about a 3?’ the ER nurse says.
7. Many of my brilliant Myeloma medical professionals are from countries outside the U.S. I love, respect and am grateful for every one of them. I wouldn’t still be here without them. Although speaking in their mother tongue, pointing at me and giggling, does put me on edge.
8. When I last picked up my Oxcycodone my Pharmacist said ‘Here you go – Oxymoron!’ Still trying to figure out if it was an honest mistake or whether Wal-Mart is hiring stand-up comedians.
9. Finding out that the Bernie Madoff Marrow and Myel-High Club for Men was a scam. And to think that I had my card punched for every one of my previous bone marrow and bone biopsies. My next one was supposed to be free. Madoff told me that he wasn’t just the President, he had bone marrow ripped from his hip bones just like the rest of us. It may still happen.
10. My simpleton friend panicked and said that he would take care of telling all of my other friends that I was diagnosed with Melanoma - a cancer of the melon. ‘No, it’s Myeloma – a cancer of the blood’ I shared. ‘Blood! Did you know that there are more than 10 miles of blood in the human body?’ he said. ‘No, there are more than 10 pints of blood in the average adult body. And there are more than 316 million feet of blood vessels. That’s 4 times around the equator! ’ ‘You have cancer in your equator and your feet, should you be sitting? ‘No, I have cancer in my… never mind. I feel fine.’ We’ve set up an appointment to have my friend’s melon checked.
S’Myelomas (wink! wink!) from Myelomaville! Drop me a line to let me know how you’re doing!
Sean
Friday, February 4, 2011
Myeloma: You Give Me Fever!
Latest post from the Myeloma Beacon:
Seans Burgundy Thread: Fevers, Flu.and a Few New Multiple Myeloma Friends
After taking a much-needed break, I will be posting more often. Just thought I'd warn you!
Blessings to you out in Myelomaville.
Sean
Seans Burgundy Thread: Fevers, Flu.and a Few New Multiple Myeloma Friends
After taking a much-needed break, I will be posting more often. Just thought I'd warn you!
Blessings to you out in Myelomaville.
Sean
Wednesday, January 5, 2011
New Year's / Multiple Myeloma Resolutions 2011
Although one of my 2010 New Year's resolutions was to not have any more New Year's resolutions, I couldn't resist offering just a few for 2011. You can see them, unless one of your resolutions is not to read any of my resolutions, by clicking on this link to the Myeloma Beacon website. Happy New Year!!
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