One of Those Kindred Spirits

I ran into a fairly-new friend this morning as I was dropping off my six year old kindergartner at school.

Kelli B. is known as one of those 'Super Moms' in the town where my wife has been the primary school music teacher for the better part of the last fifteen years. She and her husband have three kids in the district and Kelli has served faithfully as an aide, community volunteer and involved parent. I'd heard about her through my wife, whom has known her for years and has always sung the praises of this parent active (in a good way!) in her kid's lives.

What I wasn't aware of until the last year or so, however, was that five years ago, Kelli, in her very early 40s, had been diagnosed with Multiple Myeloma. She went through the Total Therapy treatment protocol at UAMS in Little Rock and the three year maintenance plan. I have to tell you - she looks great, has tons energy (she runs road races for crying out loud!) and seems to be doing very well.  

Kelli is the first to tell you that it has been a roller coaster ride of feeling good/ not so good, intact emotions and difficult times, etc and that her faith has been a keystone in her recovery.  But I don't want to go into this too deeply, because I'm excited to pass along that Kelli is looking to share her wisdom, wit and indomitable spirit in the blogging world.

If I can do this, she can do it in her sleep! Kelli's been writing and journaling, but didn't know how to deliver it to a larger audience. She has a lot to say and I'm looking forward to her foray into this caring, intelligent, searching community.  She and her family are moving from our small town over the next few months, it'll be good to keep up with her through her new blog.

It is important for us to align ourselves with kindred spirits in these tough Myeloma battles. I've been fortunate to have many such spirits, including those of you spread out across the world. Your experiences, your words of advice and your steadfast encouragement have made a tremendous impact on my life. Thank you!

I'll be sure to let you know when Kelli ventures forth with her blog! No pressure, Kelli! : )

Keep fighting! I'll be in Little Rock next Wednesday through Friday for my second three month check-up. Any prayers for continued good news would be much appreciated. Again. thank you! I hope that your Spring has been pleasant and that you are well. Keep fighting!  Sean

A Phone Call From Beyond

One Saturday morning, not too long ago, I received this phone call from a guitar player I'd worked with in the distant past:

'Hello, this is Sean.'
'Wow, man, I thought you were dead!'
'Uh, no.'
'But you had cancer?'
'Yes... but I'm still here.'
'You had cancer and you didn't die?'
'Lemme' check. Nope, I'm hanging in there. Hey, if you thought I was dead, why'd you call?'
'I, uh... wow, you didn't die?'
'Hey, I'll make a deal with you. If I die, I'll give you a call.That way you won't have to worry about calling me.'
'Yeah! That'd be great, man! I mean, not if you died.. but if you called me when..er...'
'Enough about me. How are you doing? Are you still alive?'

The vast majority of creative folks that I've worked with are bright, in-touch people. Then there are some of them that could hide their own Easter Eggs. I have a sneaking suspicion that my guitar playing friend from yesteryear knows a lot about a kind of 'chemical' therapy that wouldn't help me much with Myeloma.  

It takes all kinds to make this big old Blue Marble go 'round! And I'm going to enjoy every revolution.

Purple Heart Weekend

Hi, all! I just wanted to share some information with you about a very special event is taking place this weekend in my hometown of the last fifteen years, Branson, Missouri.

This one-of-a-kind community, well known as one of America’s favorite family vacation destinations, delights nearly 7 million annual visitors with the area’s live entertainment, stunning natural beauty resplendent with pristine lakes and rolling hills, numerous attractions, outdoor activities, festivals and world-class events.

But lesser known is that every year, Branson opens its arms to welcome thousands and thousands of America’s Veterans. The red carpet is rolled out to active duty, retired and reservist members of the Army, Navy, Air Force, US Marine Corps, Coast Guard, National Guard, Merchant Marines and their families.

This weekend, April 22-24, 2010, my dear friends at www.Branson.com are producing  the Second Annual ‘Hand in Hand: Branson Honors Purple Heart Recipients', an event to recognize and commemorate those men and women whom have earned the Purple Heart for receiving wounds during combat.  

The weekend includes fun events such as a  live music showcase with celebrities and other favorite Branson  entertainers, a fishing tournament with professional anglers leading Purple Heart Recipients,  a follow-up Fish Fry (with all of the trimmings-YUM!), a specially designed shopping excursion,  an emotionally charged parade in the downtown Branson Landing  area,  a Motorcycle Run and  a unique  tribute honoring Purple Heart recipients during the “Missouri Wine and Food Festival” at the five-star hotel, Chateau on the Lake.

As fun as these events are , there is also an important opportunity for Recipients and their families to speak with  a panel of experts from Military Order of the Purple Heart, represented by National Commander Jim Sims, and others. Topics will include 'How to Obtain Your Benefits.' Specific questions and concerns will also be addressed.

You should know that Branson sponsors many events for Veterans annually, including over 500 military reunions. What makes Branson stand out is that it does not glorify or politicize war, it reaches out to the faces touched by war and military service. 

For Hand in Hand Branson Honors Purple Heart Recipients event details visit  The Veterans Galleria at  www.Veterans.Branson.com. 

As full disclosure, when I was diagnosed, I was working as the Creative Director for Branson.com and its sister companies. They have been incredibly supportive during my difficult struggle with Multiple Myeloma. Branson.com owners Larry and Lianne Milton, the Purple Heart event producer Marlyce Stockinger and the entire company’s staff and employees are amazing people. They support cancer events such as Relay for Life, host blood mobile drives and contribute time and money to worthy charitable causes of all kinds.  They have been very blessed as a company and have never been shy about giving back.

We MMers know battles, we know sacrifice and courage, and boy, do we know about shedding blood. But I've never had a bullet or a rocket fired at me. Some of you have- thanks for your service! Friends, if you find yourself in Branson this week, I urge you to go to the Purple Heart event.  But if you can’t be there, would you consider taking a moment to remember those whom gave so much of themselves in the call of duty. I pray that someday the only wars we have to wage are against monsters like cancer. Until then...

Stay well!  Keep fighting!  Sean

One of These Things is Not Like the Others!

This is a fun game that I've played with my kids when they were younger. You've probably played it, too.

Give it a go. All but one of the items shown above is similar. Can you pick out the odd one? When you look closely, you'll notice that there are 5 pictures of 'apples' and one picture of a cascade of 'oranges.'  So which one of these things is not like the others? The 'oranges', of course.

Let's try the game again. Look at the collage below. Which one of these things is not like the others? 

Time's almost up. Here's the answer. What you see are 5 examples of some dastardly evil Myeloma cells- BOO! HISS!  And then there is a picture of some goofy guy mugging at the camera.  The guy is the odd one out, right? Hey, be nice! He's the one thing that is not like the others.

But sometimes I wonder how I see myself. Do I let Multiple Myeloma define who I am? Sure, it affects me everyday. The pain, the treatments, the medicine, the uncertain future, the incredible expense.

I may be guilty of personifying Myeloma, but I try very hard to not let it fog the essence of who and what I am. I don't want to give in to this disease one inch more than I have to. If it was a person I would call it greedy, and sneaky, and evil. It would enslave me if I let it. Left unchecked it would take my life, sooner than later. I definitely don't see it as a co-existing friend.

I am a lot of things. I am a husband, a father, a friend, a Christian. I'm a producer, a musician, a success, a failure, a goof ball in a picture. But in no way am I a walking, talking collection of cancer cells.

I understand better now what Joseph Merrick (The Elephant Man) meant when he cried out 'I am not an animal - I am a human being!'  To paraphrase, 'I am not Myeloma.'  

If you picked the goofy guy in the picture as the 'thing not like the other' you'd be right! He is the guy kicking the crud out of Myeloma and living his life. And he's never going to give up. 

Keep fighting! I'm right there with you.    Sean

R-E-S-P-E-C-T

"No, no, no! For the last time. I don't have melanoma! No melanoma! I have myeloma. M-Y-E-L-O-M-A! You don't have to respect me, but at least respect my disease! Now that we have that settled, when is my next appointment, Dr. Jones?" 


Illustration (C) Steve Greenberg / Ventura County Star


Disclaimer:  This attempt at humor in no way reflects the doctors, nurses or technicians (especially the bone marrow biopsy technicians) that I've encountered along my Multiple Myeloma journey. No really! Especially the bone marrow biopsy technicians. Especially my next bone marrow biopsy technician.   

Move Over David Beckham...

There's a New Cowgirl in Town!

Something that I try to do, despite my challenges with Myeloma, is to celebrate the 'everyday' things that come my way. As MM crept in with the subtlety of a two-by-four hitting me between the eyes, those charming slices of life have become even more important to me. Watching my children have fun, for instance.

Like millions of kids, my six year-old daughter, Lizzie, began playing in her first organized sports league this year. She is a proud member of the Wolves in the local youth soccer league.

Her team is coached by Dustin Rogers, grandson of famed television and movie star, Roy Rogers, the Singing Cowboy, and Dale Evans, the Queen of the West. Dustin, who has a son on the Wolves, performs with his dad, Roy 'Dusty' Rogers, Jr. in a great show at the Mickey Gilley Theater in Branson, MO. If you find yourself in Branson, make sure you see this show!

Branson, for those unacquainted, is a town of 7500 people in southwestern Missouri that welcomes more than 7 million annual visitors. One of the main draws to the area is the scope of live entertainment presented. Close to 80 shows, in styles ranging from Country to Broadway, Magic, Acrobatic, Comedy, Rock n' Roll  and everything in between, are produced in nearly 50 theatres. The area's stunning natural beauty, beautiful lakes and warm, engaging people, make Branson a terrific family-friendly vacation destination. It's also a nice place to live.  

Coach Dustin couldn't be a better representative of his iconic family. Friendly, hard working, ethical and great with the kids. Roy and Dale would be proud!

Lizzie loves being out on the soccer field, mixing it up with the other kindergarten boys and girls.  She's short on skills (time will take care of that) and long on energy, heart and a sense of pure fun. She loves wearing the uniform, which she insists on calling a 'costume' because her dad produces shows.

Lizzie also loves picking up the dandelions on the soccer field.

Let Mr.Beckham try that little trick during a game!



Happy Trails & Go Wolves!

Thalidomide & Filters & Clots! Oh My!

It was just about a year ago (April 09) that I found myself at home recuperating from my first autologous stem cell transplant (ASCT). Performed in Little Rock, the transplant procedure was, from my perspective, a piece of cake.  Well, maybe not like cake with frosting and sprinkles and little candles, but it wasn't too bad.

We harvested 24 million of my hematopoietic (blood) stem cells in December 08 and my UAMS transplant team transfused 6 million of those handsome, robust, hopefully over-achieving stem cells into my left arm in late February 09. I visualized them swimming toward my battle scarred bone marrow, triggering a microscopic parade filled with the deafening cheers of a gratefully rescued blood system. Hail the conquering heroes!

For the next three weeks, fighting nausea, no apetite, fevers, sleeplessness, and gastrointestinal hyjinx I'd rather not describe, I waited and watched my blood counts reach  levels sufficient for me to go home to Missouri for a much needed rest. I'd been away for nearly four months and now I was going HOME! What a great concept: Going Home! I missed my kids, my dogs, my wife, (not in that order!) my church, my everything from my normal life. I was looking forward to a couple of weeks R & R.

While I was at home, I was put on 'Bridging'  medications consisting of Thalidomide and Dexamethasone. And then it happened. One Friday evening, my left leg felt 'tight', like I couldn't 'stretch out' the muscles well enough. On Saturday it was a bit worse and on Sunday a mild pain started. By Monday morning  my leg was swelling,was warm to the touch, the pain increasing markedly. I high-tailed it to the local hospital's satellite clinic where my GP practices and he quickly asserted that 'You have a blood clot!'

A blood clot! So much for R & R! Though I'd never had one, I knew that blood clots can be extremely dangerous, even fatal. 

I was immediately admitted to the hospital and technicians performed an ultrasound STAT to assess the situation. Yep! Blood clots in my left leg, right leg and a small pulmonary embolism in my right lung. This might be bad. A doctor came in and suggested that we implant a filter in order to stop further blood clots from going to my lungs and heart and killing me.

Not killing Sean sounded like a good idea.

I remember the surgeon describing how she'd implant the filter, carefully trying to allay my fears of the 'going-through-the-groin' part. Thankfully, it doesn't mean what it sounds like. The catheter goes in through the femoral vein. Basically they snake it up through a blood vessel and deposit a metal, weirdly shaped filter into the inferior vena cava.

As she told me not to worry, that it doesn't hurt much, I began to laugh. Confused, she said everyone reacts differently in these  of kinds of situations. She assumed that I was just nervous. I went on to explain that I'd been through a lot of bone biopsies and bone marrow aspirations with nominal anesthesia, that I had a bunch of fractured vertebrae and other bones, that while pain wasn't my friend, we were kissing-cousins. All that aside, let's get the Save Sean's Life Show on the road!  The filter's implantation wasn't a big deal.

I remained in the hospital for four days and went home to my family not much worse for the wear, except that I now had to give myself Lovenox shots in the stomach every day. Fortunately I had  a big target!

As it turns out, conjecture has it that it was the drug Thalidomide that caused my blood clots. The product literature and side-effect cautions said that it might, and doggone if they weren't right. Probably.

Thalidomide has been instrumental in my Multiple Myeloma treatment. It appears that it also just about did me in. Sometime soon we'll talk about the strange history of this good news/ bad news wonder drug.

Thalidomide & Filters & Clots! Oh My!

Regards from Myelomaville!  Never Give Up!

One Year Anniversary....

Having been diagnosed in late 2008, it was about this time last year that we scoured through mounds of paperwork looking for medical tax deductions.

IRS Instructions

"You can deduct only the part of your medical and dental expenses that exceeds 7.5% of the amount on Form 1040, line 38."

I wonder if I have enough medical expenses to qualify?

...... uh, yeah.

Images (c) respective owners.  Millenium  Celgene HealthKids Sean Murray    

How Much Myeloma Stuff Do You Really Need To Know?

I spent this afternoon in the infusion center at my local hospital (it must be Wednesday!) and in the waiting room there were huddled masses yearning to get their radiation and chemotherapy sessions started and over with. 

Having been treated for a year down in Little Rock, Arkansas at a Multiple Myeloma focused center, I was accustomed to the banter, the quips and war stories centered around Myeloma. But in this local cancer center, patients of all stripes are being seen. I have found their stories and protocols all-at-once  fascinating, and scary and heartwarming. I've learned a lot and made some friends.

Please rest assured that I don't break the ice by asking 'What are you being treated for?' or 'What's your prognosis?', but it seems that many of the other folks have no reservations about inquiring why a fellow like me is eager to get into the souped-up chemo easy chair and why I'm not out making a living on a perfectly good Wednesday. Or why I'm not out doing something productive or world-changing or whatever.

I don't take personally the inference that I ENJOY being here, that I'd RATHER be here and that I have idiotically CHOSEN to get hooked up to toxic chemicals. Sheesh! I'm just making the best of it. Well, maybe they don't really think that way. Maybe it's Mr. Dex taking over my mind.Yeah, that's it.  Stop looking at me! Who said that?!  : )

I do enjoy (if that's the right word) telling people about Myeloma. Of course, most have never heard`of the disease and I feel good about spreading the word. You never know how it my help someone down the line. 

Anyway, what I've noticed is that many of these patients don't know much about their cancers. They can't name their chemotherapy drugs, they know information about treatment in only the most general of terms. Is this normal? Maybe. Are they wrong? NO! I firmly believe that a cancer patient and their caregivers have the right to get through this mess however they can, in whatever way that works for them.   If they want to leave the nuts-and-bolts to the medical experts, that's okay by me!

There are days I wish I could bury my head in the sand and forget about Multiple Myeloma. 

But I'm built differently. I NEED to know what's happening in Myelomaville. I know what drugs I'm taking, how much and why. I know what we're looking for in the tests, I fill in all of my results into Excel spreadsheets, I journal side effects and symptoms. I may not live and die by the numbers (well, maybe in essence, I do!), but I follow them like a hawk. I'm not afraid to ask stupid questions in the myeloma blogs, message boards and listservs. I've probably laid a couple of gems on my esteemed Doctors Barlogie and Nair and they didn't kick me out of the program. And I'm not afraid to write ridiculous things in this blog- but you knew that!

There are countless people working hard to keep me alive, and I thank God for them! I want to be the best team mate that I can possibly be. I want to be informed so that I can help make great decisions. After all, I have the most to gain.

Life is good in Myelomaville - thanks for stopping by.  And thank you for your support! Sean

March Myeloma Madness

March Madness is so BIG in the U.S. (for some people, anyway) that it spills over into April. Basically,authorities haven't been able to contain all of the Madness into March. In any event, March/April Madness doesn't trip off the tongue very well, so we just say March Madness.

Tonight, Indiana's Butler University will play perennial powerhouse Duke University, from North Carolina, in the National Collegiate Athletic Association's Division I Men's Basketball Championship Game. The dream game of every boy who's ever bounced a basketball.

Las Vegas pundits say that Butler, a school of only 4500 students or so, is the 'underdog' in the game by 7 or so points. This is the first time that Butler has made it to the championship game. By contrast, Duke is one of the legendary programs in men's college basketball. They've won the tournament three times in their storied history. Led by their phenomenal coach, Mike Krzyzewski (pronounced sha-shef-ski), Duke is certainly expected to win.

This March Madness 2010  showdown is a real David vs. Goliath match-up.The Butler Davids will try to best the Duke Goliaths, but as we know, in life, anything can happen! What will give the winning team the edge? Maybe it's a combination of things such as preparation, talent, aptitude, attitude, heart, determination - you know the list.

During March Madness 2009, I was recovering from my first stem cell transplant in Little Rock, Arkansas. I don't believe I'd ever felt worse. MM patients know the drill. Nausea, pain, fevers, sleeplessness, no appetite, worry and more. Though I watched the basketball tournament in my rented apartment, March Madness wasn't my focus. Myeloma Madness was. 

What I discovered in the middle of Madness 09, was that the very same characteristics that will help earn Butler or Duke earn a victory tonight, will take us through the challenges we face with Myeloma. Heart, passion, fight, preparation, a great team, faith, trust, intelligence (in my case, not my own, thank God), persistence, drive, timing, and so on. I know, without a doubt, that battling MM is a team event. I belive in my team, I trust my team.

I know that I identify myself as a 'David' in this sling-shot contest. I am going to pester and punish that Goliath Myeloma until it either falls down dead with a resounding thump or it gets so sick of me, that it slinks away and lets me enjoy a happy life with those whom I love.  

And this March Madness it's not Ensure, ice chips and immodium for me. I'm having a hotdog, ice cream and, shhhh.....maybe even a beer.  

Those of you going through Myeloma Madness this year - hang tough!! You will win. You will get through this.

BTW - I like Duke and Butler. They are both winners!  But I HATE Myeloma.

UPDATE:   It was a fantastic game!  Duke 61 - Butler 59.  Wonder if Coach K. knows anything about myeloma?

Reflections on this Easter Day

Blessings to you whom gather together to battle against Multiple Myeloma.

Though we come to this journey from different places, life circumstances and varying beliefs and faiths, a  common foe unites us.Whether you are a patient, caregiver, family member, friend, spouse, doctor, nurse, researcher, administrator, blogger, whomever you are- I want to wish for each of you peace, happiness, and the courage to continue this arduous task.

I am grateful for the breadth and depth of encouragement shown to me along the way. My prayers and good thoughts are with you always.

Thank you.

Sean

Faces of Myeloma

Hello!

If you have a moment to spare, please click on these links to read some powerful articles about Multiple Myeloma patients that have courageously contributed their hearts and souls, their energy, their talents, and so much more to help everyone battling MM.

The first article is from The Fort Worth Star Telegram, (byline Clarence Hill, Jr. dated March 30, 2010), regarding the recent passing of Elijah Alexander, husband, father, NFL star and MM patient.

http://www.star-telegram.com/2010/03/30/2078800/ex-dunbar-nfl-player-elijah-alexander.html 

The second link (from the International Myeloma Foundation website and the  LA Times, byline Sandy Banks, July 21, 2002) shares the story of MM patient Brian Novis and his wife Susie Novis' journey through MM and the subsequent founding of the IMF.

http://myeloma.org/ArticlePage.action?articleId=618

The faces of Myeloma are just like yours and mine. People like Brian, Susie and Elija (and others) inspire me to action. I don't want one more person go through what some of you have faced  in your battle. I am buoyed by hope and faith and the progress that is being made every day.   Don't give up!

Sean