Again With the Roller Coaster--Sigh

Hi everyone: This morning was my monthly visit to the Hospital at the University of Pennsylvania for my 4-week check up; the news was not the good stuff we were hoping or expecting to hear.

Despite the fact that all my other (blood) counts are very good or improving, and the fact that, in general at least, I’m feeling very, very good, my UPEP Protein counts (the main indicator of the advance or decline of the cancer) are up again--and not insignificantly. From last month’s 8-point-something, I’m up to 13.1 this month. Go figure.

Go figure indeed. The truth is, we’re not entirely sure what this means. As I said, I’m feeling great, have little pain to speak of, the creakiness and other side-effect-ish arthritic and other pain has been decreasing, and I knocked the Shingles case off in close to record fashion. And yet the insides are, apparently, still in revolt. (Somewhere there’s a hard-nosed Calvinist preacher drafting three-points and a furrowed brow from that reference.) Whether this is a really bad thing or a really, really bad thing, is to be determined, but we do know that it’s bad enough to want to do something in response to it right away.

And so, in the short term, we’ll probably begin one particular “stop-gap” treatment we haven’t tried yet. Apparently arsenic (yep, that arsenic, but minus the old lace--groan), combined with high doses of Vitamin C) and given through IV infusions, has been successful in keeping Myeloma patients either in a steady-state (no advance, no gain), and in some cases, actually helped reduce the numbers. Given this, I’ll probably begin Arsenic treatments as early as next Monday.

These infusions (which are initially given five times the first week, then two times/week after that) will take about three months to produce a result, so this will, we hope, put off talking about another transplant (either a third stem cell or a “mini” bone marrow) for a while, and perhaps allow for Revlimid, which you might remember that I took last year for about 7 months, to finally be approved by the FDA (“any day now… any day…”), and assuming I keep feeling well, allow me to finish a few more chapters of the would-be books and do a bit more consulting for the folks who need it most (those who will pay!). Indeed, I need to make some money and hold up my end of this marriage bargain, or else some whacked-out conservative “life” group will challenge my wife’s word when she tells them DNR* and DNSAFTIHBILIEA.**

I miss my wife right now. She’s in Day 4 of her week long sojourn to LaLa Land in California for the American Association for Cancer Research’s annual meeting. Once again, good benefits come with bad timing.

Four years ago last month, Sheri was at her first AACR conference (having only begun her new job only a bit more than two months earlier) when I was first diagnosed. I remember, vividly and unblinkingly, being overwhelmed by the broad, deep and seemingly infinite array of feelings and needs that swept over me that morning, and I became a bundle of fear and questions and anger and wonder and panic and all sorts of unknown and only scantly recognizable emotions and numbnesses.

But the one thing I remember being overcome by, more immediately and intimately than all the other immediate and intimate things that were overcoming me, was how much I missed Sheri, how I didn’t feel like I could go on for a moment without her there.

Sometimes, the emotions and needs that come with marriage can feel like proximity as much as affection, habit as much as love. But that morning, with Sheri in New Orleans with her cell phone turned off and me alone in my office, there was no mistaking what I felt for simple nearness or the ritual of life together. That morning, with an intensity that is usually reserved for those last yearning, leaning, full-weight-against-you-while-your-weight-falls-against-the-door late-night good-night kisses of courtship, I needed to be with my wife, to look her in the eye, to hold her hand, to just sit alone near her.

Since then I’ve taken comfort from many sources—the laughter of friends, the familiar rhythms of a song, the bluesy wail of the Psalmist, the prayers of the saints—but none have ever come close to the grace that I felt that evening when she walked off of the plane and hugged me.

Today, I miss my wife. She’ll be home Thursday night.

Meanwhile, thanks for your prayers and kindnesses. You are loved.

And you are admired, too, for your willingness to shame this preacher with your embrace of his call to remember the voiceless and nameless in your life and prayers. Thanks.

And please, please, remember that these little admonitions began with a plea to remember the forgotten and the marginalized, the hated and scorned, with my wondering if the kindness I received would have been the same if I had one of those diseases you earn.

And so, with that I invite you to remember who broke the alabaster ointment and then later was first to the tomb? Were, perhaps, the others there late for fear of reputation?

Love you.
Dwight

* “Do not resuscitate”
&
**“Do not stick a feeding tube in his belly, isn’t life ignoble enough already?”

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