While I am not so much a creature of habit, my Wednesday afternoon activities over the last three years have been pretty much chiseled in stone.

At around noon on a typical Wednesday, I drop everything that I’m doing, jump into my car, drive across the Kimberling City Bridge that sits perched 30 feet above beautiful Table Rock Lake, and then wind my way through the rolling Ozark hills and picturesque hollows toward the nationally known tourist and entertainment small city of Branson, Missouri.

Upon arrival at my destination, I am normally greeted with a warm ‘SEAN!’, as if I’m entering my friendly neighborhood pub.  I’m then invited to relax in one of the comfortable over-stuffed recliners that fill the venue’s main room.

The nice folks on duty kindly offer me a refreshing libation, sometimes a home-baked cookie or two, urge me to settle back, and assure me that someone will attend to me shortly.  I am free to read a book, web surf courtesy of the free WiFi, tune in to my favorite program on a small flat-screen television, or do whatever it is that contents my heart.

Ah... it is always so nice being pampered on a Wednesday afternoon.

And then, like clockwork, an always engaging attendant comes over to me, smiles, we exchange some pleasantries, and then she proceeds to stick a sharp needle into my arm.

And it was going so well up to that point!

It’s true, there is some sharp-needle-sticking going on around here, but never fear, it’s all part of my Wednesday master plan.

The needle sticker, a highly skilled nurse no doubt listed on some exclusive registry of nurses, sets an I.V. and draws several vials of blood from me, the stickee. The blood is then miraculously sent via a pneumatic tube to the nearby lab for testing.  I hope that the fellows in the lab prefer my blood shaken, not stirred.

Anyway, the test results are usually completed within an hour or so, or roughly the time it takes a nincompoop like me to pretend to read the latest headline article in Blood: The Journal of the American Society of Hematology.

The nurse faxes a copy of the hot-off-the-press results to my oncologists, and we call them to get a green light approval for me to receive an infusion of 2 mg of Velcade ^[1] (bortezomib), a novel agent normally used to fight multiple myeloma, a cancer of the blood.

Hey! Seeing as how I just happen to have multiple myeloma, a cancer of the blood, having Velcade handy is a good thing for these Wednesday soirées.

To date, I have completed more than 150 weeks of Velcade infusions and blood tests at the Skaggs Cancer Center in Branson. That’s a lot of chemo and a lot of cookies.

How did I find myself a willing, or a not so willing, participant in this madness?

Four years ago, during Thanksgiving week of 2008, I was diagnosed with an advanced case of multiple myeloma. In the span of a couple of weeks, a simple back ache morphed into an excruciating pain that I could no longer ignore.  Off to my docs I went. Sound familiar to some of you?

A couple of tests performed by my local medicos led to a hunch, which led to a referral for a diagnostic work-up at the Myeloma Institute for Research and Therapy (MIRT) in Little Rock. Never underestimate the potential power of a well-placed hunch.

After having confirmed suspicions that I, indeed, had an advanced case of myeloma, I sought second opinions. After performing due diligence and weighing my options, I consented to enroll in MIRT’s Total Therapy 4, a Phase 3 clinical trial for low-risk myeloma patients.

I temporarily moved to Little Rock from December of 2008 to October of 2009 and began the Total Therapy 4 clinical trial, which included an induction round of chemotherapy, followed by stem cell collection, followed by another round of induction chemotherapy, and then tandem autologous stem cell transplants (two back-to-back transplants using my own stem cells), and finally, two rounds of consolidation chemotherapy. While I was there, I also underwent three kyphoplasty surgeries to repair damaged vertebrae. Many MIRT patients have taken similar paths.

In periods when I was feeling better, I was able to make a couple of short trips back home. During the visit between my stem cell transplants, I was hospitalized for several days when my body, without permission, conspired with thalidomide ^[2] (Thalomid) to manufacture several potentially deadly blood clots and pulmonary emboli.  Bad body, bad!

A filter was placed in my inferior vena cava to prevent future blood clots from traveling to my heart.  I was then introduced to the wonders of blood-thinning Lovenox (enoxaparin) shots delivered in the stomach.  Trying to think positively, I was sort of grateful that dexamethasone ^[3] (Decadron) helped make my stomach an easier target to hit. Some of you know what I mean.

In mid November of 2009 I moved back home to Missouri and began maintenance chemotherapy infusions on, you guessed it, Wednesday afternoons.

My maintenance chemotherapy regimen, VRD, uses the three drug combination of Velcade, Revlimid ^[4] (lenalidomide), and dexamethasone.

The Velcade is infused once per week, dexamethasone tablets are taken on the day of the Velcade infusion, and Revlimid pills are taken on a 28 day cycle of 21 days on and 7 days off.

My side effects have not been too severe and rather predictable.  I have experienced lowered red blood cell counts with the accompanying anemia, lowered white blood cell counts resulting in numerous colds and bouts with the flu, and low platelet counts typically hovering between 80,000 and 110,000 per microliter, significantly shy of normal platelet counts which start at 150,000 per microliter.

The dex has caused weight gain (do your friends call you Moon Face?), hot- and cold-running mood swings, and many sleepless nights.

I have also experienced mild to occasionally moderate peripheral neuropathy (pain, tingling, and loss of sensation) in my feet and hands, most likely the result of Velcade use. It was much better during my third year (not sure why, the dosage stayed the same) so I didn’t entertain the thought of switching to subcutaneous Velcade. Given worse symptoms, I wouldn’t hesitate to go the subcutaneous route, which is supposed to cut down on the occurrence of severe peripheral neuropathy.

In the three years of maintenance therapy, I have learned to fist bump, kiss no babies or strangers or strange babies, shave and brush my teeth carefully, and to always have tissues on hand for my perpetually runny nose. My family has learned to mark reminders of impending ‘Tyrannosaurus Dex Daddy Days ^[5]’ on the family calendar, and I’ve learned to steal a nap when I am able.  My ongoing bone issues remind me that I am no longer unbreakable.

Just this last week, I went back to Little Rock for a scheduled six-month check-up. An MRI (my 14th), a PET Scan (my 10th), bone biopsy and bone marrow aspirations (my 17th of each), and blood and urine tests (too many too count!) all revealed no monoclonal proteins and no active lesions.

I am fortunate to have been able to sustain a complete response since my first autologous stem cell transplant in February of 2009 – a total of nearly 46 months.

But my favorite outcome of the trip is that the main body of my four-year Total Therapy 4 clinical trial is finished!

For the time being, I will no longer be taking myeloma chemotherapy drugs; e.g., Velcade, Revlimid, and dex.  Yay!  I am looking forward to shaking off the side effects of taking those medications. Those of you savvy in all things myeloma know that this is a big, big deal.

My doctors and I will monitor my progress through monthly blood tests and bi-monthly urine tests. In six months, I’ll go back to Little Rock for another close evaluation.

I pray that I am able to sustain this remission for many more months and years to come.

I must note that several folks out there have already been willing to point out to me that relapse is a real possibility and that a cure is not attainable.  I know the realities. To you killjoys – back off! Let me enjoy my honeymoon!  Keep your negative thoughts to yourself.  Sheesh...

If I am granted even a handful of days during which I can completely forget about multiple myeloma, enjoy a meal that tastes the way it’s supposed to taste, get a good night’s sleep, march up the hill with an energy long forgotten, or not have my nine-year-old daughter worriedly ask, ‘How do you feel today, Daddy?’ – then I will be grateful.

In the meantime, thanks to God, the love and support of my family and friends, the hard work of the medical pros at MIRT and Skaggs, and my many myeloma friends, I’m still raising a ruckus. Let’s all agree to continue to conquer multiple myeloma.

And now I have to figure out what to do with all of those new-found Wednesday afternoons!  Wish me luck!

Be well out there in Myelomaville!