Tuesday, March 30, 2010

A New Treatment?

I witnessed an amazing thing on Sunday afternoon when our church held its Annual Easter Egg Hunt.

Our teenager, Kate, and her friends, helped 'produce' the event by 'hiding' plastic eggs in the fenced-in playground behind the church. Lizzie, our six year old, joined her driven-by-their-sweet-teeth buddies in the 'finding' of the Easter eggs.

This is the amazing part:  I saw 61 little kids scoop up hundreds and hundreds of colored, candy filled eggs in a matter of seconds. It was like a blitzkrieg, except nobody died. Little legs were pumping, arms were scooping, baskets were filling. The truly talented were capturing three, eating one, capturing three, eating one.

What started out as a field covered in a rainbow coalition of Cadbury's finest, ended up as a monochrome green carpet that an army of lawn-goats would be proud of. A swarm of biblical plague locusts couldn't have pillaged the yard any better. I think that I even saw a crop circle in the shape of a rabbit.

If my body could harness the pure energy and exacting focus of those kids on their mission, I think that I could cure my Myeloma. Those MM cells are hiding, I need to do some finding. Maybe I should visualize the Myeloma cells in vivid food dye colors as they are obliterated by chemotherapeutic agents dressed in Garanimals.  

I'll let you know how it works out!

Bock-Bock! Thanks Easter Bunny!

Thursday, March 25, 2010

My Total Therapy 4 UAMS Treatment Schedule

Hi!  Here is a very myelomic post for MM people. It will make more sense to you than the non-initiated blog readers.If there are questions feel free to respond or  e-mail me at (sean dot murray57 at gmail dot com).

In an e-mail, a MM patient asked me where I was treated and if I would provide details. Well, sure.

I was treated at the University of Arkansas for Medical Sciences' Myeloma Institute for Research & Therapy (MIRT) in Little Rock, AR.    http://myeloma.uams.edu/

The protocol that I followed was Total Therapy 4- Standard Arm. Dx- 11/25/08, IgG kappa, 77.5 % plasma cells at Dx (3% now!) , in Complete Remission. I'll share number progressions in later posts - when I'm convinced that people are actually reading this blog!  : )

          Total Therapy 4: Phase III Trial for Multiple Myeloma

11/24/08         Diagnosis      IgG kappa

12/09/08 -      Induction # 1  
12/30/08         MVDTPACE    
                       Stem Cell Collection -  24 Million
                       Velcade     (days 1,5,8 and 11)
                       Melphalan   (day 3)
                       DTPACE    (days 5-8)

12/31/08 -       Bridging     
1/10/09           Dex / Thal

1/11/09 -         Induction # 2  
1/27/09           MVDTPACE
                       Velcade    (days 1,4,8 and 11)
                       Melphalan    (day 1)
                       DTPACE    (days 1-4)

2/27/09 -        Transplant # 1    (6 million stem cells)      
3/17/09           Unfractionated Melphalan 200
                       Melphalan 200mg/m2  (day -1 )
                       Dexamethasone 40mg (days -2, -1, 0, and 1)

3/18/10-         Bridging       
4/12/10           Dex / Thal
                      (stop Thal. 7 days before Transplant)

4/13/09          Developed DVT
                      Hospitalized , Vena Cava Filter placed
                      Lovenox SQ  prescribed  for blood clots

5/13/09-        Transplant # 2     (3 million stem cells)      
5/29/09          Unfractionated Melphalan 200
                      Melphalan 200mg/m2 ( day -1 )(BSA Cap of 2.0)
                      Dexamethasone 40mg   (days -2, -1, 0, and 1)

5/30/09-        Bridging       
7/13/09         Dex / Thal

7/14/09-        Consolidation # 1      
7/31/09         VDTPACE
                     Velcade (days 1,4,8 and 11)
                     DTPACE      (days 1-4)

8/6/09           Kyphoplasty
                     (1)  T-4

8/7/09-          Bridging       
9/3/09           Dex / Thal  
9/4/09-         Consolidation # 2      
9/21/09         VDTPACE
                     Velcade (days 1,4,8 and 11)
                     DTPACE  (days 1-4)

11/11/09-     Maintenance           
10/31/12       VRD (every 28 days x 3 years)
                     Velcade 1.9mg   (days 1,8,15 and 22)
                     Dexamethasone 20mg  (days 1,8,15 and 22)
                     Revlimid 15mg   (days 1-21, off 22 – 28)
                     Zometa 4mg    (every 3 months)

2/4/10          Kyphoplasty   
                     (2) T 11-12

    Drug Key:

    V= Velcade
    M= Melphalan
    T = Thalidomide
    D = Dexamethasone
    P = Cisplatin
    A = Adriamycin
    C = Cyclophosphamide
    E = Etoposide
    G =  Granulocyte Colony
               Stimulating Factor
     R =  Revlimid,

What a year! All in all, I have fared well and feel pretty darn good. I still experience pain, neuropathy in my feet and hands, but I continue to progress. The treatment, as promised, was aggressively rough, but I'm still standing! Going to UAMS was a good decision for me.

graphic (c) UAMS/MIRT  used with permission

Ok, Ok, I'll Get a Facebook Account Already

I know that I'm way behind the times, but yesterday I jumped the chasm and joined Facebook. It was at the urging of my of my 13 yo daughter, Katie, a devoted Facebooger, er... Facebooker. Friends and colleagues from the past are starting to find their way to me. When I become more confident with how it all works, I'll venture out to find some more blasts from the past.

My career has largely been as a writer/producer of live entertainment and creative consultant and the talented folks I've worked with over a 25 year span  (literally thousands of instrumentalists, singers, dancers, performers, technicians, designers, choreographers, theatre owners, etc.) are scattered across the globe. I'm hoping that they visit this blog, in part to catch up with me (and vice-versa), but more importantly so that they can learn a bit about Myeloma.

Just as it takes a village to raise a Sean Murray, it will take a concerned, informed world to rid us of this  disease. Research scientists, doctors, and ordinary motivated folks just  like you and me. My extended entertainment gang is an incredible group of exceedingly caring people- I hope that they join the fight!

Thank you to the Myeloma patients, caregivers and bloggers out there - you've made a tremendous difference in my life! I didn't choose this &$%^#  malady, but I'm going to beat it!

Warm thoughts to you from Myelomaville!
PS -  insert the expletive of your choice for &$%^#.   Mine was 'darn' , Katie- really! ; )

Tuesday, March 23, 2010

Thank You, Mark Twain

Last night I finished reading (or re-reading after many years) The Adventures  of Huckleberry Finn, one of Mark Twain's great American novels. I remembered the same feelings that I had as a young boy, being swept away on Huck and Tom Sawyer's tale of drifting  down the mighty Mississippi River, meeting colorful antebellum characters, visiting quintessential river ports of the late 1880s. This trip was about freedom and losing yourself in a world of your own choosing.

During the final chapter it was time for me to take my Revlimid, Coumadin and various other evening pills. It just so happened that I ran out of three of the medications and, as I stared at the empty bottles, a bright idea hit me.

I decided to gather all of the empty pill bottles, and the as yet unused, send-a-sample-to-Little-Rock-once-a-month urine collection bottles, to build myself a modern day raft. Myeloma patients, if they're like me, go through pill bottles faster than  a speeding bullet. I have hundreds of them!

I live a minute from beautiful Tablerock Lake. I imagined myself floating under the stars, listening to the wind birth small whitecaps across the pristine water, an occasional cry of a lake bird. If lucky, perhaps I'd get a glimpse of one of the majestic eagles that call the lake and surrounding hills home.

Myeloma has tried to take so much from me, but I'm determined to keep the upper hand. I decided to use those pill bottles and the bright orange urine jugs to recreate Huck and Tom's voyage. This morning I excitedly told Karen about my bold maritime goal.  

'How are you going to tie all of those bottles together?  You realize that you weigh 190 lbs and are bigger than a breadbox. Do you really have enough bottles? Do you have to call the Missouri Water Patrol for permission? What about Celgene and the FDA? Using a Revlimid bottle as a raft is an off-label use. Can you swim with fractured vertebrae? Take your hand sanitizer. Do you really think that you can pull this off?'

'Well.... yes I do!'

'Okay, I believe in you. But be back before supper. And take your pills with you. And...........'  

I'm never going to let Myeloma take away my dreams - even the little ones.

Monday, March 22, 2010

Where Should You Go? Branson, MO!

A friend with a diagnosis of Myeloma called to say that her family was traveling to Branson for an early summer vacation and she wondered if I had any insight about what they should do while visiting.

As a quick FYI for all heading this way, please take a look at these links for some great ideas and local information:

Having lived and worked in this area for several years, I'll be blogging occasionally about some of the interesting people and exciting things to do in this neck of the woods.  It is a friendly, warm, and charming place to visit, chocked-full with live shows, shopping, lots of hotels and restaurants, great outdoor activities - all offered at an outstanding value. No I don't work for the Chamber of Commerce and yes, there is an airport!

Stay well!

So What Is Multiple Myeloma?

I had never heard of Multiple Myeloma until I was diagnosed with it in November of 2008. I immediately consulted the decade-old medical encyclopedia that was gathering dust on my home office bookshelf and one glaring fact captured my attention: I was going to die. Or so I thought!

Since then, I have survived over a year of aggressive treatment, achieved complete remission and resolutely immersed myself in a world I never could never have previously imagined.

For those of you keeping score, following are are some simple facts about the disease:

What is MM?

Multiple Myeloma is a cancer of a particular type of white blood cell (WBC) called a 'plasma B cell.' Plasma cells, like all WBCs, are the major components, the soldiers, if you will, of a person's immune system. Our immune system, as you know,  protects us from infections and diseases.

Plasma cells (and all other blood cells) are manufactured in the Bone Marrow (BM), the spongy tissue found in the center of most of our bones. Some of these plasma cells stay close to home in the bone marrow, and some travel to other parts of the body and go to work.

Our bodies have many different types of plasma cells. Each plasma cell produces one specific kind of  'immunoglobulin' or 'antibody' which fights a specific substance invading the body. Antibodies are made up of proteins. 

When plasma cells become cancerous they reproduce uncontrollably. You've heard of one bad apple spoiling the whole bunch?  Well get a load of this:

In MM, one stinking little plasma cell creates a cancerous copy of itself and that dastardly clone makes a copy of itself, those cells make clones, over and over again. These don't have the normal genetic cell directive to die- you have to kill them. These abnormal plasma cells, all exactly alike, are called  "monoclonal," cells, meaning that they all originated from one common cell. I can identify the type of Myeloma I have from the existence of great numbers of specific kinds of plasma cells in my bone marrow. My Myeloma came from one traitorous original plasma cell that went haywire. BTW, doctors still don't know why this happens- but they will figure it out!

As these malignant Myeloma cells increase in number in the bone marrow, they begin to crowd out and displace healthy WBCs, healthy red blood cells (RBCs)`and healthy platelets, preventing them from doing the jobs our bodies need them to do. If you don't have enough WBCs working for you, your body is susceptible to infections and disease. Not enough RBCs? You can't transport enough nutrition/oxygen (via hemoglobin) to your body's cells and you become grossly fatigued and anemic. When you don't have enough
platelets, which help blood to clot when arteries, veins and capillaries are damaged, you are in danger of uncontrolled bleeding. 

Here's the scary scenario that I faced. Healthy bone marrow contains roughly 3-5% plasma cells. When I was diagnosed, tests revealed that my marrow was comprised of 77.5% plasma cells. Yikes! Sean had too many  cancerous Myeloma cells and not enough RBCs, WBCs and platelets. I have friends with Myeloma (some affectionately call us Myelomiacs) with 90% plasma cells at diagnosis. I have a sneaking suspicion that we weren't headed for anything pleasant had we not been diagnosed and thrust into treatment. 

Sounds like a Myeloma infomercial. These malignant plasma cells produce 'osteoclast activating factors' (OCFs) which cause calcium to be leached out of the bones and into the bloodstream. This results in (1) 'hypercalcemia' or dangerously high levels of calcium in the bloodstream and (2) 'osteolytic lesions' or holes literally being punched out in the bones. These holes weaken the affected bones, making them prone to fractures. Lift up a paint can- break your arm! you might have Myeloma. Kick a soccer ball and break your femur. Hey, you might have Myeloma! Not kidding here. I was sitting up after a PET Scan and my sternum broke.

Sometimes the Myeloma cells join together to form tumors, or plasmacytomas, which may subsequently break through the weakened bone structures. In addition to my sternum, I've had fractures in my shoulder blades, arms, ribs, and several collapsed and/or compressed vertebrae. OUCH is right! 

If that's not enough, these malignant plasma cells also produce excessive monoclonal immunoglobulins, or antibodies, called M-proteins which can overload the kidneys, leading to abnormal kidney function and possible renal failure. My Myeloma cells over-produce Immunoglobulin G (IgG) proteins. 

In brief (too late!), MM can cause bone pain, anemia, and renal failure. Frequent infections are common because of compromised immune systems. And here is a biggie: 

There is no known cure for Multiple Myeloma.

Major strides have been made in fighting this disease in the last few years. Brilliant research scientists and doctors continue to try to unlock the mysteries of this horrible cancer. Remissions are possible with new treatments, but Myeloma cells are infamous for becoming resistant to common chemotherapy. The immediate goal is to get the disease growth under control and to keep patients in remission, with a good quality of life, for as long as possible. 

The Numbers

Patients are usually diagnosed in their mid to late 60s or older. I was 49. MM accounts for between 10% - 15% of all hematological (blood) malignancies, with roughly 15,000 new cases diagnosed in the U.S. each year.  MM makes up roughly 1% of all diagnosed cancers and 2% of annual cancer deaths. Over 50,000 Americans are currently living with Multiple Myeloma. Median survival rate for patients in the United States is roughly 2.5 to 3 years from diagnosis, but it varies from the severity of the disease at diagnosis, treatment and support quality, and the patient's response to drugs, stem cell transplants, etc. MM is more common in men than women, and in African Americans than Caucasians.    

There you have it! Not very pretty, but I am convinced that major developments will happen over the next 5 -10 years. My doctors at UAMS believe that a cure will be found. That is what I pray for. In any event, I will not give up!

How did I get into remission? That'll be for a future post. For a deeper understanding of MM, check out the links to the right.

In the meantime, I'll keep fighting the good fight here in Myelomaville!

Thursday, March 18, 2010

A Day of Gratitude

I rolled out of  bed this morning and for the first time in many months, I was without significant pain and I had no nagging cold symptoms. For this I am truly grateful! Chilly and damp outside, but warm and toasty inside on this Spring Break week in Branson.

I am also mindful today of the anniversary of the passing of my mother. 23 years ago, at the age of 55, Mom died from complications of Multiple Sclerosis. The disease robbed this bright, active woman of so much. She was bedridden for several years, but she never lost her fight and her spirit. I also saw my dad, a tough, salty, career Military man, serve as an incredible example of a superb caregiver for my mom. He left us in April '99, at 67 years of age, after a two year bought with prostate cancer. I miss them both dearly.Sadly, my father-in-law passed from prostate cancer a few years after my dad.  Do I have to tell you how much I hate cancer? 

Even at 51, today I just feel like my parents kid. 'Gonna go  call my  brothers.

Deep thoughts and reminisces in this neck of Myelomaville today. And a lot of gratitude.

Be well!    Sean

Wednesday, March 17, 2010

The Luck of the Irish!

Karen and I sauntered over to the Cancer Center in Branson this afternoon so that I could have my weekly maintenance chemotherapy treatment (#18 of 156). Because our local school district is enjoying a week of rainy, 40 degree Spring Break, Karen, the local elementary music teacher, was able to come with me for the first time. She especially enjoyed the super-duper, feature rich, over stuffed recliners, the pull down TVs and, of course the engaging, ultra friendly Infusion Nurses. She's seen a lot of chemo treatments in the last sixteen months, and this was a nice visit.

Karen and our two daughters baked some special St. Patrick's Day cookies for the staff and fellow patients and their delicious mint and chocolate delights were a hit. I only ate one. Of course it was after my large panel of blood tests - don't want to drive up that Glucose score! I think the dex I take on chemo day does a good job of elevating those numbers already.  BTW Glucose came back at 96 - everything else was good, as well.

The big surprise was that all of the names of the Center's chemo patients were dropped into a box and one lucky winner was drawn to receive a St. Patrick's day treat. And wouldn't ya' know it (how do you write in an Irish brogue?)   yours truly, an honest to goodness Irish American laddie, won the prize.

It was a shiny Irish Bowler Derby hat filled with lots of sweet goodies that neither of us really needed. We'll give them to the kids - get your hands off that Snickers Bar, Katie!  There was also a Kelley Green coffee thermos (for Irish coffee, maybe?) and some nifty sunglasses.  Thanks guys!

Here's an old Irish proverb for the fabulous ONC/RNs:  May the wind be always at your back, the sun warm on your face, may your friends always be at arm's reach and your Lord even closer. And if I might add: May all of your Irish American Myeloma patients stay in remission for years and years and years! HA! Can't say that I wouldn't mind becoming an old Irish American!

Life is good right now in this part of the Village of Myelomaville.  Happy St. Paddy's Day to you!


Tuesday, March 16, 2010

It's the Little Things

Having been away from home from late 2008 through 2009 during my cancer treatment, I missed lots of the 'little' things that happen everyday within the family. This morning I had the great fun to take my youngest daughter Elizabeth to get her hair cut. She is a very cute six now -we adopted her when she was almost two years old.
Lizzie walked over to the chair, slowly climbed up and shyly asked her hairdresser to 'leave it just off the shoulders, shape it in the back with a little curl and clean up the bangs, please.' I guess she knows what she wants! She also had a deluxe shampoo to wash out the temporary pink hair dye that she was sporting from a home beauty session the night before. 

The second photo is the picture Karen and I received in 2005 when we found out that Liz (then Guo Yan Wei) was available for adoption. Look at her! How could we say no?  She's come such a long way from that scared two year old to the kindergarten dynamo that she is today!   

I'm reminded of the song 'Turn Around' made famous by various artists including Diana Ross, Harry Belafonte and the Kingston Trio. You know the words:

Where are you going my little one, little one
Where are you going my baby my own
Turn around and you’re two,
Turn around and you’re four
Turn around and you’re a young girl
Going out of the door.

(c) 1957 CHERRY LANE MUSIC PUBLISHING CO INC & Reynolds, Greene and Belafonte

The kids are growing up so fast! I'm not going to let Myeloma get the upper hand and make me miss the precious 'little' things that happen everyday. They are far too important. And far too fun!

See you around Myelomaville!

Monday, March 15, 2010

In a Flash!

If you are like me, you can probably think of instances in your life when everything seemingly changed in the lightning flash of a split second.

Maybe it happened when that one-in-a-million girl eased her way  into the crowded room at a party. Your eyes met, she mesmerized  you with a dazzling thousand watt smile, the world around you ceased to exist and you were instantly made slave to her every beck and call. In my case, I've been under the magical spell of my wife for the last twenty or so years - and I've loved every minute of it!

Or maybe your life changed the moment you heard your newborn cry for the very first time. In ways too astounding to contemplate, you knew that an amazing adventure lay ahead of you.

These quick-change moments aren't always happy things, though. In the matter of a few seconds, a family is devastated because of a tragic automobile accident. A soldier, wearing a crisp dress uniform, steps onto your porch to tell you that your son has perished in war, bravely defending those unable to defend themselves. A call from your Grandma comes in the middle of the night to tell you that your beloved Granddad has passed on.

'I'm sorry to tell you this, Mr. Murray, but I believe that you have cancer. And, unfortunately, it looks like it is an incurable cancer of the bone marrow called Multiple Myeloma.'

I looked over at my wife and her thousand watt smile was gone. We were facing a disease that neither of us had even heard of.

Thursday, March 11, 2010

Myeloma Youreloma - What's in a Name?

Lizzie, my six year old daughter, visited me in Little Rock during my treatment for Multiple Myeloma in the Summer of 2009. She asked me 'How is your 'eloma' doing, Daddy?' My 'eloma'? Oh,  I get it. I scooped her up in my arms and said 'My 'eloma's' a lot better now that you and Katie are here! '

It was the first time they'd seen me without hair and a mustache and certainly the first time they'd seen me with three strange tubes dangling out of my chest. Shoot- they'd never even seen me with two tubes sticking out of my chest!

And because my white blood cell count was bottomed out at 0.0 x 10^3/u L (translation: just about no white blood cells on the job - where's my bubble?) I had to talk with them through a bright yellow and white face mask.

The night before they visited, Lizzie told me on the phone that she was afraid to see me without hair, that she might not recognize me. It broke my heart that my kids, both adopted as orphans in China, had to worry about their dad being really sick and having to live away from home for a long time. But in Lizzie's magical everything's-going-to-be-okay way, she ended up rubbing my head for good luck and asking if I could put root beer into my port tubes. I wish! 'Daddy, what happened to your eyebrows? Do you still use shampoo? Did those tubes hurt when they put them in?' Well, no honey,it didn't hurt at all. They gave me a little shot.' Yes, they gave me a shot when they shoved a catheter into my jugular vein and sewed the port into the skin of my chest. Just so that you readers know - it didn't hurt. Really!

Things haven't been easy through this struggle, we've fought very hard to keep going. But never harder than when I remember that I'm not just some guy tackling this disease. I'm Katie and Lizzie's Daddy. I'd do just about anything for Katie and Lizzie's Daddy. Those kids deserve it.

It's never been all about me. This disease has affected everyone that loves me. I may have the diagnosis, but they, especially my wonderful wife, experience the fear, the uncertainty in ways that I can't imagine. I'm still standing because a lot of people have rallied around me. You folks living with cancer and dealing with other difficult situations know exactly what I mean.

Lizzie and Katie, I'm sorry to say that Myeloma is, well, Youreloma, too. But we're going to get through this together, Kiddos. My prayer is that one day we'll be able to say Bye-eloma to Myeloma. In the meantime, we're going to keep dancing and singing songs and baking chocolate chip cookies - with extra chips, of course, just the way we like them!

Wednesday, March 10, 2010

It Must be Myeloma Wednesday!

Today's Wednesday, so like every Wednesday from now until November 2012, I can be found enjoying my weekly chemotherapy treatments at the local hospital's Cancer Center.

My primary care is provided at the University of Arkansas for Medical Science (UAMS) and the Myeloma Institute for Research and Therapy (MIRT) in Little Rock, AR - four hours south from my home in Southwest MO.   http://myeloma.uams.edu/     Having gone through MIRT's Total Therapy IV protocol from November 2008 through 2009, I'm now in the 'Maintenance' phase of treatment at my local hospital In Branson, MO. I return to Little Rock every 4 months for testing, evaluation and Dr.'s appointments. I also think that they use me for Bone Marrow Biopsy new-technician training!  : ()

Today was weekly chemo session #16 of a projected total of 156 treatments over the next 2.5 years or so. To date, I am tolerating everything rather well. This phase is certainly easier than the induction rounds of high-dose chemo, the two autologous stem cell transplants, four kypholpasties (surgery to repair damaged vertebrae), and consolidation chemo treatments which I underwent in Little Rock. 

For those of you that are curious and unfamiliar with a chemo session, my Big Wednesday Maintenance Chemo Treatments run like this:

> 1. I drive the 40 minutes to the Cancer Center in Branson.
> 2. I grab an infusion chair whenever they call my name. Sometimes there's a wait, sometimes not. A $50 bill gets me a seat by the window and a  bottle of wine. Should one choose red or white when receiving platelets?
> 3. I give the RN/ONC (whomever drew the short straw) my weekly lab/chemo orders and we discuss the day's game plan. They are fantastic oncology nurses, though they haven't seen a lot of MM patients. I chose UAMS in Little Rock because of their vast experience with MM. My Branson nurses ask great questions and tolerate mine with non-condescending smiles. I am very fortunate on all fronts.
> 4. We start an IV. I chose not to have a 'port' implanted for the 156 infusions. I alternate arms from week to week and, so far, I've had no problems with veins failing.
> 5. We take my vital signs (temp., blood pressure,pulse oxygen levels, IQ).
> 6. We collect the blood work and send it to the lab. Once a month I send serum and urine samples back to Little Rock, once a month we draw an expanded panel of blood tests and once every three months I get an infusion of Zometa, a bisphosphonate (say that fast 3 times) that helps combat some of the bone issues present with MM. Also, once a month, we take pokes at a pinata in the shape of a cancerous myeloma cell. You should see the mad scramble when Oxycodone and Jelly Beans rain over the infusion center floor!
> 7.  I wait anywhere from 45 minutes to 2 hours (you know how it is!) for the lab reports to come back. Each chair has a fold-down TV, but I usually hop on my netbook and catch up with e-mail, read blogs, steal passwords, manipulate my test results, etc. Ok! Ok! Sometimes I watch TV, but only educational programs. What do you mean that 'Ice Road Truckers', 'Three Stooges Marathons' and 'Seinfeld' reruns aren't educational. 
> 8. The results finally come in and the Branson nurse calls a nurse in Arkansas to report the lab results (she also sends results via fax). We either get the 'greenlight' to administer 1.9mg of Velcade or the 'redlight' to not administer the chemo! So far  we've had 16 straight green lights.
> 9. The local nurse gives me a complete copy of my lab results and I enter them into my nerdy Excel spreadsheet to see where I'm at in the program. Anybody seen my pocket protector?
> 10. With the go-ahead, the RN/ONC orders the magic bag of myeloma-busting Velcade and when it arrives, they give it to me in a 6 second IV push. That's right - six seconds of chemo! Trust me, I am not complaining! Of course, the dexamethasone I took earlier in the day has already whacked me out and I rattle on like a banshee and keep making trips to the refrigerator for the 'free' snacks and drinks. It's great to get a free Diet Dr. Pepper when you've been billed several hundred thousand dollars for treatment.   
> 11. Then they run saline through my IV for 15 minutes or so, announce to hospital security that Sean Murray will soon be off the property and the threat levels can return to normal, and I'm on my way home or to Burger King to screw up my blood chemistry even further!

So that's what I do every Wednesday afternoon. At least it keeps me off the streets!

Stay well! 


Let the Blog Begin! or There's a Monkey on My Back

It was Tuesday, November 25th, 2008 at 9:45 pm and I was laying on the space-aged sliding table of an MRI machine at the University of Arkansas for Medical Sciences in Little Rock. My claustrophobic,  two hour long joyride, complete with that infernal BANG, BANG, BANG-ing noise,seemingly delivered by an unsupervised barrel of monkeys armed with ball peen hammers, had mercifully ended. What normally might have been 'no big deal' was made infinitely more difficult because I was experiencing excruciating pain in my bones.

A young doctor (not Doogie Howser young, but likely half my 49 years) came into the room to tell me ‘We need to admit you to the hospital tonight because of your back problem.’ ‘My back problem?’ ‘Yes. You have a collapsed vertebrae at T4, there are bone shards and a tumor compromising  your spinal cord and if you fall down or turn the wrong way at the wrong time, you might paralyze yourself from the chest down.’

Oh, THAT  back problem.  No wonder a heating pad and a fist full of Aleve hadn’t  given me any pain relief.

Sheesh! It was just three weeks earlier that my GP had calmly told my wife and me ‘You might have cancer- but don’t quote me. We need more tests.’   Unfortunately, he was right. And above and beyond an eventual diagnosis that included the word ‘incurable’, it now sounded like a sudden attack of my natural klutziness might lead to unimaginable problems. Stop this not-so-merry-go-round, I want to get off!

Fast forward to today. It’s been a remarkable sixteen months and [SPOILER ALERT]  I’m not paralyzed and my incurable bone marrow cancer is in remission. The struggle continues, but there is HOPE! And to tell you the truth, my team and I are aiming for nothing less than a cure.

Myeloma Youreloma is designed to answer some of the questions that my friends, family, and unsuspecting internet travelers may have regarding Myeloma, my personal trek through Myelomaville, and more.

There are some decidedly cerebral, exactingly detailed Myeloma blogs cast out across the net - this isn't one of them! I can’t promise that I’ll spell everything korrectly or offer a daily update, but this will be an honest attempt to share my thoughts, as  ill-focused and silly as they might be.

Feel free to participate in this process, yell at me, beg for me to stop, ask questions, bribe me with apple pie, do whatever you'd like. By stopping here, you are now an honored visitor to the village of Myelomaville. And I need your help, for as they say, it takes a village to raise a Sean Murray.

Welcome to the Village!

Sean 'trying hard not to be the village idiot' Murray

Illustration (c) Ariel Schrag