Last month I promised to update you following the discovery that I had developed several large plasmacytomas (lesions or tumors) under my ribs.  I had just started radiation therapy to relieve the sharp pain I felt there.

I’m happy to report that most of the pain is now gone.

Reflecting back, it’s been a tough month.

Leading up to the discovery of the plasmacytomas, I had been feeling much better than in the past, thanks in part to ongoing testosterone ther­a­py and a maintenance regimen of once-a-week Velcade ^[1] (bor­tez­omib) and 20 mg of dexamethasone ^[2] (Decadron) for four weeks, followed by two weeks to rest.  For close to a year, I almost felt normal again.

The discovery of the plasmacytomas changed all of that.

In addition to ten days of targeted radiation, my medical oncologist and my myeloma specialist agreed to resume Revlimid ^[3] (lenalidomide), Velcade, and dexamethasone (RVd) therapy immediately.  The plan was to increase the frequency of my subcutaneous Velcade injections to three weeks on and one week off, to add 15 mg of Revlimid daily, and to increase the dose to 40 mg of dexamethasone during the same three weeks I receive Velcade.  I was also on a half dose (12 mcg) of fentanyl for my rib pain.

That’s a lot of everything to be exposed to all at once.  I wasn’t bedridden, but I felt like I could be!

Since then, I’ve been able to drop the fentanyl, and my radiation therapy concluded two weeks ago.

My doctors suggested I stop using Revlimid early last year, not because it had stopped working, but because it was suppressing my white blood cell counts.  So far, my counts are fine, but I still don’t feel like myself.

I was surprised a therapy that I had endured for months on end before would bother me so much now.  But my wife, Pattie, reminded me that I felt this way then too.  I describe it as “punky.”  I feel fatigued, like I’m coming down with the flu much of the time.  I’m having trouble focusing on things, and my short-term memory is shot.

My peripheral neuropathy (pain, tingling, and loss of sensation in the extremities due to nerve damage) is also continuing to advance very slowly.  The bottoms of my feet are now completely numb.  My muscles become stiff and unresponsive following Velcade injections.

But peripheral neuropathy is the least of my worries.

My primary concern: Is the myeloma responding to this therapy combination that has worked for me in the past?

I won’t have the answer to that until week’s end.  Even then, if may be too soon to tell.

Feel like you’re caught up?  Good!  Because you know me – I can’t write a column without sharing my thoughts and feelings about what I’m going through.  While it isn’t any fun, I guess things could be described as tolerable.  That is, tolerable for someone who is running scared and peering back over his shoulder after relapsing for a third time.

That’s the perspective I would like to share with you this month.  You must be familiar with the term, “Everything is relative.”  This simple phrase perfectly describes how it feels as I march along on my myeloma journey.

I’m not sure I would have considered what I’m going through now as “tolerable” a number of years ago.  For one thing, I’m a lot tougher now.  But mostly, it’s the “relative” thing.  I’m willing to put up with a lot more discomfort and inconvenience now than I was back then.

In the beginning, everything is about quality of life.  We ask for dose reductions, or to switch medications, if side effects are uncomfortable or inconvenient.

That long first remission or period of stable disease is like a honeymoon.  The serious, life-or-death nature of things still hasn’t quite sunk in.

But as time between relapses shortens and I cycle through medications, my self-preservation instincts start to set in.  Tried-and-true therapies don’t work as well, if at all.  I find I’m willing to put up with a lot more than I once was.  Seeing one’s options dwindle – and catching glimpses of what things might be like in the end – will do that to a person.

Of course, all that matters is I’m here and alive today.  I’m able to write, wash dishes, and walk the dog.  I may not feel great doing it, but it sure beats the alternative!  I feel fortunate to still be around.

Feel good and keep smiling!