Thursday, February 9, 2012

Hello & My Recent Myeloma Beacon Article

Happy February!

It's starting to get cold here in the Ozarks of southwest Missouri. Up until now we've been averaging temperatures 20 degrees warmer than normal. No snow to speak of and much to the chagrin of my teacher wife and two school-aged daughters, no snow days off from school!  Not complaining, mind you, it could change any minute!

I've attached a  link to my most recent Myeloma Beacon article Sean's Burgundy Thread: Just This Week .
If you are interested in all-things-myeloma, the MB is a great site to visit.

As some of you have asked, I'm also re-printing the article as follows:

Sean’s Burgundy Thread: Just This Week

 Published: Feb 7, 2012 at the Myeloma Beacon    www.myelomabeacon.com


Just this week, an acquaintance of mine passed away due to complications from his long-running battle against multiple myeloma.  He was treated at the same out-of-state myeloma clinic at which I was treated. We occasionally ran into each other at the local cancer center where we both received maintenance chemotherapy.

He was fifteen years my senior and had a lot of medical problems aside from myeloma. Ultimately his kidneys were destroyed, he was on dialysis, his heart was diseased, and he had trouble getting around most days. While his condition dictated that he could no longer go hunting or fishing or walking in the woods that he loved so much, it was okay, though, because he quipped that he was ‘filled-up with enough outdoor memories to last two lifetimes!’

Although he had so much going against him, I never saw him without a huge, friendly grin on his face that broke into a hearty belly-laugh now and then. The oncology nurses painted the same picture of him.  Their sadness at his passing was profound.

I knew that he was in pain, but he never seemed to pity himself and he never failed to show concern for how I was doing. He told me to stay strong and to ‘enjoy today, because today is what you have and you don’t want to waste it.’

I didn’t know him outside our short visits at the infusion center, but his courage, his humor, and his thousand-watt smile will stay with me forever. I’d wager that his was a life well lived and that there were people all over the place who felt a connection with him.

He was much bigger than his myeloma.

Just this week, I ran into an old friend who had been a performer in some live musical shows that I had produced several years before. She was wildly talented and exceedingly bright, and it was always a great joy to be around her. In the busyness of life, we’d lost contact.

She was in town this week serving as the coach of a visiting high school’s girls basketball team that was facing my freshman daughter’s high school team.  Watching her work, it was obvious that she had taken the same passion, exacting skill, and determination that she possessed as a top-drawer entertainer, into the coaching and teaching fields. It was heartwarming to see the love and respect that her kids had for their coach.

Before the game, I caught her attention and waved hello to her. She smiled, came over, and gave me one of her patented bear hugs. The last time that I had an opportunity to visit with her in person was many months before at the benefit that her school had created to show support for her fight against breast cancer.
At the time of her benefit, she was sporting the proverbial ‘cancer uniform.’ You probably know it well: ball cap or scarf, no hair, gaunt appearance, fear etched deeply in her eyes. When she weakly hugged me, tears came to both of us.  I was afraid for her. All we could do was to say that it was going to be okay. I didn’t know if either of us believed it.

Breast cancer wasn’t the only difficult period in my friend’s life. She has overcome other challenges that would undo most of us.  But through her subsequent struggle with cancer, I have seen an amazing faith in God emerge that has buoyed and comforted her husband and young children, her friends like me, and her community. She has touched the lives of many people undergoing cancer treatment.

She recently announced that the doctors have declared her to be cancer free.  My dear friend is much bigger than breast cancer!

When I was diagnosed with myeloma and eventually understood the sobering nature and reality of facing cancer, I remember sitting down with my wife and saying that I wanted to be able to look back on our journey and say that we did our best in fighting it, that we would let the experience only strengthen our family bond, and that we would live with dignity, courage, and faith, no matter the outcome.

Just this week, I was reminded by one friend who passed away and by one friend who lives on, that we are not defined by cancer.  Multiple myeloma may someday take my life, but it does not own me. The caption of my existence will be the strength of my character, the depth of my relationships, my willingness to reach out to others and show compassion, and my ability to stand on my faith no matter what comes my way.

Don’t forget, you and I are much bigger than myeloma ever will be.



Thursday, January 5, 2012

Happy New Year!

Happy New Year 2012 out there in Myelomaville!

It sounds like a good year to hand multiple myeloma its walking papers. I am tired of having to say 'farewell' to the myeloma friends that I've made across the world. Maybe this is the year that will bring remarkable breakthroughs in the fight against cancer- I pray that it is so!  I will NEVER give up! 

Here's a link to my latest Myeloma Beacon - Sean's Burgundy Thread article. And make sure, MM patients and those curious about what I am battling,  to take a look at some of the other columns and the up-to-the-minute myeloma news and information that the Beacon presents on a daily basis.

God's Blessings for a safe, healthy, joyfully exciting year ahead! Keep in touch!

Sean

Thursday, December 15, 2011

Myeloma Christmas Memories

Christmas is just around the corner! I want to share a link to my December  Myeloma Beacon article which talks about how different my Christmas experience was when I began my myeloma journey three short years ago.

Happy Holidays and an early Merry Christmas to all out in Myelomaville!

Thursday, November 10, 2011

Marines and Multiple Myeloma

There have been some rough spots during my last three years of treatment for multiple myeloma, but when it gets particularly bad, I think of a short-list of people or groups whom have shown extraordinary courage under fire, proverbial and otherwise. 
I remember other cancer patients (including my parents) whom have quietly shown me that there is no disgrace in being afraid in the midst of adversity. They've shown me that it is possible to face difficult times with dignity and grace; that to ask for help and understanding is not a weakness; that to reach out and help another person in distress, even while facing my own pain and uncertainty, is noble. They have taught me how to march forward.
Today in the United States we celebrate and remember the 236th Anniversary of the founding of the U. S. Marine Corps. 
I have known many very fine Marines in my lifetime. Men and women, Generals and Privates, active duty, retired and reserves. Wet-behind-the-ears youngsters just out of high school, college graduate professionals, CEO quality senior officers, family members, neighbors. Some I like personally, some I don't, but U.S. Marines one and all.
Almost to a person, they abhor war. Like me, they prefer peace. They have made a choice to put their lives in jeopardy to protect, promote and preserve the freedom of our country and for others around the world.
I have met Marines with myeloma. They have shown me how to summon a personal strength from within to fight and keep fighting against this cancer. Some have said that the duel with myeloma is scarier than conventional warfare, because the fighting is internal. You can't look myeloma in the eyes - you can't reason with it. You can't sit at a negotiating table and vie for compromise or surrender.
I view the battle with myeloma as a that - a battle, a war. Myeloma is a terrorist, an aggressor. My job is  to wage the best campaign against myeloma that my team and I can muster. As I have said before, myeloma is willing to take everything I value and hold dear from me. I won't sit idly by, because my time is running out.
Please, these thoughts are not intended to spark a debate about Marines or policies or anything political. I'm just sharing a bit about a special group of people whom have influenced me in my joust with myeloma.
Most importantly, Semper Fi and Happy Birthday, leathernecks! Thank you for what you do.

Wednesday, November 9, 2011

Myeloma Institute Treats Its 10,000th Patient

Hear ye, hear ye!

Congratulations are in order to the University of Arkansas for Medical Sciences' Myeloma Institute  for Research and Therapy (MIRT) for hitting the milestone of treating its 10,000th multiple myeloma patient. Since MIRT's founding 22 years ago, patients have traveled to Little Rock from all 50 of the United States and more than 50 different countries.

I credit Dr. Barlogie, Dr. Nair, and the stellar team at MIRT for keeping me around to enjoy more time here on this Big Blue Marble of ours! Thank You! 

In case you didn't catch the link   



(Thanks to the UAMS News Service for this link)

Saturday, November 5, 2011

RIP Matthew Peterson

Please pray for the young family of Lutheran Youth Pastor Matthew Peterson . Matthew, 41, passed away this week from multiple myeloma and leaves behind a dear wife and two young daughters. This breaks my heart.


- link courtesy of the Chicago Daily Herald

Thursday, November 3, 2011

Thanksgiving Thoughts

With Thanksgiving just around the corner, the native Ozark wild turkeys are getting a bit nervous. I see them darting around in the woods between my house and Table Rock Lake. They keep looking over their shoulders and conspiratorially talking with each other and pointing my way.  I think that they are the ones cooking up something.

I try to tell them that they needn't fear me because they don't have those little 'pop-up-I'm-done' buttons that have been genetically bred into the Butterball birds. Such interesting creatures - such little trust....

In the meantime, here's a link to some of my Thanksgiving Thoughts as recently posted at the Myeloma Beacon.

Happy belated Thanksgiving to my Canadian friends, Happy early Thanksgiving to my U.S. friends and Blessings to the rest of you around the world in your corner of Myelomaville!

Thursday, October 6, 2011

Think Before You Drink


Although I hate having been diagnosed with Multiple Myeloma, the experience has taught me many valuable lessons. About myself, about the strength of my wife and children, about my faith, and about the immense courage of others facing this disease-  not to mention a good bit about the world of cancer and medicine.

One of the terrific things that I have learned about is a wonderful drink with which I really hadn't been much acquainted. Karen and the kids drink it, but I'm not as adventurous in my libational leanings. My mom drank it. My dad drank it. Not sure why I never acquired the taste.

It seems that someone wiser than I  managed to remove preservatives and additives from this drink to make it more healthy to consume. Gone is the high fructose corn syrup and other sugars. Missing are the artificial colorings and exotic extracts, the phosphoric and of other varieties of acids, the grains, starches, yeasts and clarifying agents. If you get the right kind, it has no hormones, antibiotics or other questionable goodies.
 And it looks good in a snifter, stein or stemware, a mug, a tumbler or a coffee cup. Heck - it works in a paper cup! 

I will admit that it is an acquired taste. Give it some time and you will be craving it.  

And best of all, they've managed to ensure a reduced caloric content. I will still have an occasional beer or glass of wine, a diet soda or a refreshing glass of milk, but more and more I've come to rely on this new drink.Though it doesn't work well for me with my magic bullet food - pizza!

I like it so much that I give it to my dogs when appropriate.

 Click this link to learn more about this Wonder Drink . And no, I don't sell it!

The  American Cancer Society even mentions it, along with other drinks, in their guidelines about dealing with chemotherapy and cancer treatment.

Let me know if YOU drink it!

See you out and about in Myelomaville!

Sean

Image courtesy of the fine folks at VectorStock.com (file id# 344325)
Thanks to www.allaboutwater.org for the link


Tuesday, October 4, 2011

Myeloma Beacon: I'm Just Wild About Hairy

If you're interested in reading some cutting-edge news & information about Multiple Myeloma, sail on over to the Myeloma Beacon.

After you've read the important articles, browsed the forums and checked-out the numerous MM resources, why dontcha' kill a couple of minutes by reading my monthly Myeloma Beacon offering at  Sean's Burgundy Thread .


My article, I'm Just Wild About Hairy, may just help you stay rooted during your chemotherapy. 

Stay connected out there in Myelomaville! 


Monday, September 26, 2011

Myeloma Move-Its



It is rumored that famed Hollywood directors M. Night Shyamalan  and Spike Lee have joined forces to launch 

M-Spike Productions

Tinsel Town’s first studio solely created to release full length pictures featuring health-challenged superheroes. 

Award winning actors Myeluma Thurman &  Chemeau Reeves will appear on tonight’s Jay Lenolidamide Show to announce their participation in M-Spike’s   

Transplanters:  Revenge of the BiopZs.



 Stay tuned for more news from the fine folks at 
Myeloma Move-Its.