Moonshine and Velcade

(OP- 8/26/10) Ozarky Hills, MO - In order to mitigate the high cost of Multiple Myeloma chemotherapeutic agents in this struggling economy, some of my Ozark native colleagues have stepped up to lend a hand by utilizing their considerably honed creative skills.

Local onkolojist and beverage distributor, Henry 'Doc' Hallow, MD (Moonshine Doctorate)  and his twin brother, Lenny 'Happy' Hallow, have devised a way to distill generic bortezomib using an ages-old moonshine making and animal rendering approach.

Happy is also spearheading a process whereby lenalalomide tablets are stamped out using ingredients native to the local hills. The only drawback so far is that they have an overwhelming perfume d' skunk. It is also reported that it is difficult to keep the fine animal hairs out of the products. Oh, and then there's the side effect that it 'may cause permanent blindness.'   

Billycade and Lennyalomide may not be covered by insurance or prevailing patent laws, but at 3 cents per serving, er.. dose, the price is right!

Calls to Millenium, Celgene, Blue Cross / Blue Shield and the FDA have not been returned.

Reporting from the back hills of Myelomaville, Sean Murray

** Disclaimer / Confession:  Hillbilly is not a derisive term and I use it with deep respect, although within this parody it is utilized for cheap laughs. The folks (mostly of Scotish, Irish and Scotch/Irish ancestry) that I've met living here in the Ozarks for the last 16 years have been hard working, intelligent, honest, open and friendly. No doubt, a lot like you always and me on a good day! 

People Are Talking!

This past weekend I took my 13 year old daughter and her friend to the movie theater to see Vampires Suck, a parody of Twilight, the latest-craze motion picture and book series. I couldn't bring myself to see the Vampire movie with 150 giggling teens, so I went to the new Angelina Jolie spy thriller, Salt, which began 20 minutes after the girls' flick.

Katie and her friend joined the Vampires' line and I queued up in the Salt line, 30 feet away from the girls.  And that's when I became an eavesdropper par excellence. 

'Isn't that the music teacher, Mrs. Murray's daughter?' the woman in front of me in the Salt line loudly asked her companion. 'Yes it is. I remember when they brought her here from Japan.' 'You mean China.' 'That's right, China.' 'She's very pretty.' 'Yes, she is. It's a shame about her dad.' 'Her dad? What happened?' 'He got some strange form of cancer or a brain tumor or something. I think he died last year. He was a lot older than her.' 'Oh, that is so sad. I hope that they are doing okay. You want some popcorn?'

'Excuse me' the first woman said to me,  'Would you save our place so that we can go to the concession line?' 'You bet!' The ladies returned just as the Vampire line started to move.

So many things were racing through my mind. The little devil on my shoulder said 'Have fun with this!' but the angel said 'Let it go!' As it turned out, I didn't have an opportunity to play any tricks.

As Katie moved passed me in her line, she said 'See you after the movie, Daddy!' 

I thoroughly enjoyed watching the ladies' faces  morph to brilliant shades of embarrassed crimson. Not another word was shared and they sat very far away from me during the movie.  

For the record, Karen and I are the same age and I don't have a brain tumor. I think.


   

Myeloma Vacation - Texas Style!

My wife, two daughters and I combined my latest 3 month Myeloma check-up in Little Rock, (where it was hot! hot! hot!) with a quick vacation trip to the even hotter, but always beautiful Texas city of San Antonio. After a scattered, everyone-everywhere summer, we wanted to enjoy a fun family event before school started back up. 

Karen, a 20+ year music teacher, and our 1st and 8th grade daughters would soon enough be bringing home reading assignments, creating quirky art projects, telling tales of how difficult it is in public school  these days (and that comes from Karen!) and, no doubt, inadvertently exposing me to colonies of ne'r do well school kid germs. 

But before all of that began,  we needed one last summer fling before getting back to the grind. Don't tell them, but I love the grind. Last summer, I was in the middle of chemo and more chemo, stem cell transplants and surgeries. I'll take the daily grind over  an infusion session any day!  

When everything was expertly packed  into our mini-van,, Karen would describe it as crammed,  we left the sweltering Ozarks and arrived in Little Rock roughly 4 hours later - just in time for the girls to swim in the hotel pool. I didn't swim because ...uh...Velcade, Revlimid, and Dex don't mix with blistering sun. Right? Even if they do, don't tell Karen. This astute reasoning has gotten me out of push mowing my several acre lawn all summer. That and vertebral compression fractures. Why I didn’t think of Myeloma 15 years ago, I'll never know!

Little Rock, AR    I arrived for appointments at UAMS's Myeloma Institute for Research & Therapy (MIRT) on Wednesday morning where I underwent comprehensive blood tests, a full body MRI, and a bone biopsy with bone marrow aspiration, my 10th or so. The goal was to see what the last 3 months of maintenance therapy had done for me or to me.

Because the highly specialized MRI machine that I was assigned was needed by a critically ill patient, I was asked to come back later that evening for a second MRI session to complete the ‘DWIBBS’ portion of the imaging test.

I thought that I was being asked to come back later when the 'dweebs' get MRIs.  A 'dweeb'  is an American (I suppose) colloquial term for a geek or a nerd. I admire those very bright, go-get-‘em MRI techs, but why do they have to go and insult a sensitive patient like me? Clearing up the confusion, I learned that DWIBBS stands for Diffusion Weighted Imaging with Background Body Signal Suppression of the whole-body. Oh, DWIBBS! Why didn't they just say so? Go ahead and DWIBB this dweeb!

 There were no appointments or tests on Thursday, so we ventured out near the William S. Clinton Presidential Library to tour the world headquarters of Heifer International, an amazing organization whose mission it is to work with communities around the globe to end hunger and poverty and to care for the earth. We have supported their efforts for several years, but had never visited with them.


Please go to  www.heifer.org  to see the tremendous work Heifer is doing. BTW, their corporate building is known as one of the 'greenest' office complexes on the planet.

One of the highlights of the trip happened Friday morning when had the pleasure of an all-too-brief visit with fellow MM blogger, Lina S. of   www.lsmyeloma.blogspot.com/ . Lina is in her last consolidation chemo round at UAMS before heading home. I happened to catch her pre-neutropenic and in great spirits. I must tell you, it was inspiring to meet Lina and her mother. Both vibrant, bright, beautiful, take-charge MM warriors. I wish the Lina Team the very best that life has to bring.

Later that morning Karen and I met with Dr. Bijay Nair to discuss my test & procedure results. I can't begin to tell you how much we like Dr. Nair and Dr. Barlogie, MIRT’s founder. I will certainly do this in a future post, as I feel a well deserved  S'Myeloma Award coming on!

Test Results   Drum roll please! I’m grateful to report that the results show that there is no evidence of plasma cell Myeloma in my bone marrow aspirate and biopsy. Serum and Urine Immunofixation results relate that I'm still in remission, in complete response. Thanks to my entire team at UAMS and thank you God for giving me yet more time to wreak havoc and try the patience of those around me. It is good to have purpose!

 
Texas!    After Friday’s appointment, we hopped into the mini-van and drove from Little Rock to Georgetown, TX to grab a hotel for a good night's sleep. We arose early in the morning and traveled the short distance to the Texas state capitol in Austin. After an impressive tour of the Capitol building, we got on the highway to continue our journey south to San Antonio.

Doug and Rita, our longtime friends now living in S.A., joined us in the early evening at the hotel's busy outdoor pool. The girls all swam as Doug and I caught up and enjoyed a libation (that's a drink, for all of my friends back in the Ozarks) in the comfortable, covered area adjacent to the pool. Curiosity, and hunger, took a hold of us as Doug and I walked over to the Whataburger, a chain neither of us had ever tried. On the way we mused about how the brand name is inflected. Is it WHAT? a Burger (conveying disappointment or surprise ) or is it WHAT A BURGER! (the endpoint on the exhilaration scale). The burgers were fine and a Diet Coke chased down my $381.00 Revlimid pill.   

On Sunday we drove to D & R's beautiful home and then headed to downtown San Antonio for some fun. We ate at a bustling Tex-Mex cafe on the River Walk, did some window shopping, toured the famed Alamo Mission (very interesting) and then bee-lined over to Sea World San Antonio.

Doug, Sea World’s V.P. of Entertainment, guided us to some of the park’s popular evening shows.  Karen, Katie and Liz had never been to a Sea World before and they were absolutely mesmerized by the love and care the trainers and staff had for the whales, otters, sea lions, walruses, penguins, dolphins and the other beautiful creatures. Many of these particular animals can't thrive in the wild and, contrary to what some would have you believe, they are exceedingly well cared for at this world-class venue. The educational outreach is second to none.

On Monday, Rita took my 13 year old, Katie, shopping and then we rendezvoused back at Sea World for a couple of more hours of fun. For dinner we gorged ourselves at the casual eatery Rudy's, branded as the Worst Bar-B-Que in Texas. Rudy's was HIGH on the exhilaration scale, by the way!  Good food! Then back to the hotel for the evening for more conversation, swimming and relaxation before saying our goodbyes.

I want to share that Doug and Rita's small family has endured several monumental health challenges with great courage and faith through the years. Spectacular family, fantastic kids, positive, active people. Their friendship is one of our most treasured gifts. It was healing to be with them.

Bright and early on Tuesday morning we said goodbye to Texas and began our 15 hour drive home to Missouri. Back to maintenance chemo, back to school, back to life with re-charged batteries.

Hope that you out there in Myelomaville have had some fun this summer. I'm thinking about and praying for you all! Keep fighting!

Sean