October 31, 2003: I Am A Guinea Pig

Dear Friends: It’s been a very long time since I last brought you up to date on the current state of our affairs—a fact that has been driven home by several inquiries and emails in the last few days. I’ll try and be concise as well as honest, and hopefully together we can find something like encouragement.

The last time I wrote I was engaged in two essential/immediate challenges and one particular opportunity.

Pain Management The first challenge was the on-going adjustment (or lack there of) I was having to my various (and necessary) anti-pain medications. Unlike when I first was diagnosed 2 & ½ years ago (when I had no reactions of any kind to any of the pain medications they prescribed), this time around the various drugs the docs have given me have made me constantly nauseous or worse. It’s been especially frustrating for a bunch of reasons, including the fact that I’ve had lots of work to do that I simply haven’t been able to get to—and billable hours are valuable hours, you know?

Anyhow, the end result of all this up and down with my meds has been that since the end of September (when my pain returned and my protein counts were shown to have dangerously risen), I have lost a bit more than 20 pounds—all due to either not eating at all or actually being sick. It’s been a rough month, to be honest—where I’ve been as physically drained as I remember being since just after my stem-cell transplant in the fall of ’01.

Costa Rica However, there was about a week-long break in my discomfort when I traveled to Costa Rica where I served as the keynote speaker of Habitat for Humanity International “Global Communications Conference” (my second big “challenge”). Before the trip, as I mentioned in my last ‘update,’ my doctors worked quite hard to help me find some kind of balance with my meds, and they all pushed me to make every effort to go. As it turned out, it was an amazing four days and was exactly the kind of direct and obvious answer to prayer we’d hoped it would be.

We had essentially two basic prayers for the trip. First, we hoped that I’d feel well enough to make the trip—especially the nausea and the discomfort in my pelvis and hip while riding in coach. Check. The travel to Costa Rica was remarkably uneventful—pleasant even. The same was true for my actual time in Costa Rica itself—there was just one of the 4 days I was there that I didn’t feel on top of my game, and that was a day when I had no real responsibilities. While I certainly had my share of the “cancer pain” throughout the trip, it was all manageable—or at least tolerable.

The second prayer was the deeper one that spoke to my own sense of self and purpose and even calling. As I told you, the theme of the conference was “Advocacy” and as I prepared, I became quite obsessed with two basic notions. The first was that I wanted to do well—that I wanted whatever I presented to at least aim toward excellence, I wanted to come away from the experience convinced that I had been good at my job. I wanted to be able to take justifiable pride in my work. This, obviously, is a function of hard work and concentration, and given what the days leading to the conference were like, I was more than a little worried.

The second notion was this one: that when all things were said and done I wanted to be able to say that “good happened”—that something above and beyond the sum of the parts of the content and the communicator had taken place. This notion, unlike the first, has nothing to do with pride or excellence in work, but is in fact the opposite—a fundamentally humbling experience, because you see your efforts, however confident or meager they might be, and you know that Grace had its way with them.

It’s an amazing thing, honestly, to talk about this trip, because while it certainly could have been better/smoother/more concise, I can’t think of another thing I’ve done in 20+ years of various “public” speaking and ministry, etc that was more deeply satisfying to my soul, and more humbling in my spirit. The stuff of my work, I believe (and have been told) was both timely and good, but there was also an intangible sense that somehow we’d found a way to get out the way of Grace and let it do some good work.

So, all that to say this: I know that many of you were praying, and I thank you. I certainly felt their effects. (It was also an amazing thing to get to spend quality time with so many good friends from the Habitat-universe. Those of you who are reading this update from that group know who you are—and know what an immense encouragement you were to me: thanks!)

Guinea Pig Just a few days after I returned from Costa Rica (on October 22) Sheri and I met with a team of research doctors and nurses at the Hospital at the University of Pennsylvania to discuss my involvement in an ongoing clinical trial of a new drug called Revimid. After looking over my past treatment history and checking my current state of health (and once again tinkering with my anti-pain cocktail) they determined I could be part of the trial, which I began last Tuesday (10/28).

Participating in the Revimid trial is simple enough. I take the Revimid (or it could be a placebo) in combination with very high dosages of Dexadron, a steroid that was part of my original “chemo” treatment when I was first diagnosed (the “D” in VAD) and that has since been shown to be very effective on its own in fighting Multiple Myeloma in post-remission patients. I take the Revimid daily for 28 days, and take the Dex in four day on/four day off cycles during that cycle. Since they never prescribe this size of dosage of steroid apart from a trial like this, right now that means four of eight mornings I take 21 pills—20 2 mg tablets of the Dex with the test drug. I have to journal exactly when I take the pills, as well as all other pills/drugs I take, and any and ever side effect I encounter. Plus, at the end of the 28 day cycle I must return all the drug blister packs and my journals. In short, they’re making sure that nothing is left to their imagination.

As this is a “blind” trial, I don’t know if I’m getting the Revimid or not; and they won’t tell me unless my ongoing tests suggest that the combination is not working and my counts rise some more. If this is the case, they’ll pull me from the study, unblind it and then take appropriate next steps—either get me on the Revimid (if I’ve been on a placebo) or decide what other options there are for me. If, God willing, my counts decrease on the study, then I’ll stay on it indefinitely (and blindly).

As I mentioned in my last update, Revimid is a derivative/cousin of Thalidomide, but without the sedative side effects. They are very excited about its usefulness and possibilities in fighting MM. The steroids, however, have some potentially serious side effects, including restlessness and (eventual) puffiness around the face and/or weight gain. The folks administering the trial, however, have an amazing support network, and we feel as cared for and as in good hands as we’ve ever felt along this journey.

Odds and Ends A few odd things of note between the 22nd and last Tuesday are worth mentioning however. First, I had to have a new “base” measurement of my cancer protein count for the beginning of the study, so last week I did the obligatory 24 hour collection of urine and a bone marrow biopsy. As you might remember, my counts at the end of September, after 3+ months on Velcade, had shot up to 18 from around 3, an extraordinary leap in such a short time. (Clearly Velcade is not the “miracle drug” for me.) Well, after nearly a month of being on no medicines designed particularly for my cancer, my protein counts have dropped to between 12 and 13—still very elevated, but still substantially reduced. Again and clearly, Velcade is not the drug for me.

Second, last weekend I had to be admitted into the hospital, initially due to a ramping up of my hip/pelvis and back pain (easily fixed with a big IV push of muscle relaxants and narcotics), but then ultimately because my hemoglobin and platelet counts had plummeted to dangerous levels. It was fixed with a simple transfusion and a big old shot of “Procrit” (for those of you who watch US Network News broadcasts, it’s the “Bobby needed a ‘big-boy’ bed” add), and again can probably be attributed to the cumulative effects of the Velcade. Still, it was a less-than-great way to spend a Saturday.

Balance Finally, it seems that we’ve finally figured out the right balance of anti-pain medicines. Since they’ve started me in the Revimid trial, I’ve managed to actually eat and sleep reasonably, and even noticed a slight reduction in my hip/pelvis and leg pain. This is an encouraging sign on several levels, especially since I’m so anxious to actually keep busy doing my work with the various ministries and publishers with whom I’m under contract. It also is encouraging in terms of simply keeping my “head up”—actually, our heads up, since I know that my constant worn-out-ness and nausea can more than add up on Sheri. She’s spent the better part of the past month waiting in that hinterland of “in-between,” trying to be encouraging to me, listening to my doubts and fears and worries (and honestly, those doubts and fears and worries have been far more real and pronounced this time around), while at the same time having to bear her own burdens and fears. She’s been amazing, to say the least, but I’ve been anxious to find at least a few small ways to help ease her load.

One of the ways I normally do that is by cooking, but with the pain in my hip/pelvis and leg exaggerated by standing still in one place for extended lengths of time, I’m pretty much incapable of making most meals. In fact, most of the household duties we normally share have fallen on her shoulders. This sucks.

However, the evening out of my nausea this week did allow us a glorious and, ultimately, quite godly diversion on Wednesday night, when we were able to attend an Emmylou Harris/Buddy Miller concert at a local music venue. Buddy (and his wife Julie) have been dear friends of mine for a long time (I wrote the liner notes to one of Julie’s earlier records in the early 90s), and since then they’ve become greatly beloved as the “first couple” of Americana music. In fact, they’re really in that rarified list of “whose who?” in the Nashville scene—playing with and honored by almost everyone who is anyone on the scene. (If you don’t know their music, check it out at www.buddyandjulie.com or www.buddymiller.com –they’re genuinely revelatory and absolutely grace-laden) Thanks to Buddy’s generosity, we were able to go to the show—the first live music we’ve been to in ages—as well as meet Ms. Harris, which was also a genuine treat. (We’d missed another concert opportunity a few weeks before when our fantastic friend and artist Bill Mallonee had been through town—but I’d been too sick to go see him… sigh. Check out his music at www.billmallonee.net)

I tell you this little story largely because for me it encompasses for me the best kinds of little victories in this process. More than anything, I’m realizing that it is the simple things like being well enough to spend the night at a concert that give hope a little traction.

Traction And as I’ve suggested, hope has been a bit more elusive this time around than during my past episodes. I can’t really say why, other than this: the first time through was all about responding and reacting, but this time we’ve actually had time/opportunity to reflect on the fact that I have a disease with no known cure.

There are lots of little ways that this happens, like those mornings when I’ve wake up and look outside at a glorious Indian Summer warm and wonder if I might never play golf again. (Silly? Absolutely. But real nonetheless.) And then there have been the looks in my doctor’s eyes this time around, that far-away and perhaps even ‘wit’s end’ look that have suggested a deeper concern than I’ve noticed before.

Not to say that we haven’t been fueled daily by multiple sources of encouragement and hope, especially now that we’re in this trial and our doctors are again looking (and acting) confident around us again—so we are far from despondent. But the reality is that we’ve also experienced the bitterness of failure, and that also factors into our emotional calculus. I promised that I’d be honest and transparent in these ‘updates’ when I began them 30 months ago, and because of that I feel obligated to at least acknowledge the moments of fear or despair we may occasionally face.

But I acknowledge them not simply as an exercise in transparency. When I lectured in Costa Rica a few weeks back, I focused on the notion of the biblical word for advocate—“paraclete”—which means at its core “one called along side” or “one at the shoulder of.” It’s the word that Jesus uses in John 14, 15 and 16 to describe the Holy Spirit, and it’s suggestive of the very nature of grace. The whole point of this thing we allege is “Good News” is that God refuses to abandon us in our brokenness—that it is exactly at our point of greatest need where the Creator/Redeemer wants to be known and felt. God does not wait for us to catch up to him (forgive the gender-specific pronouns), to find a way for us to reach his level before he offers us his comfort or mercy or encouragement. Rather, he runs to meet us in our weakness. He seems to prefer us in our weakness.

In fact, it seems to me that we may do a great disservice to this notion of grace—and perhaps even blaspheme—when we try and make ourselves “appropriate” for an encounter with God—whether on a moral or emotional or even theological level. He prefers us as he finds us—faulting, failing, broken, and even profane—and probably hates our attempts at pretense as much as we hate them ourselves.

And so I’ve concluded that if there is to be any comfort, any wisdom, any tenderness or any mercy in this process, it won’t come by some bogus, scrunched-up, manufactured optimism manifesting itself in some kind of “positive confession” or overly-earnest prayer offered like Elvis pushing a stool on his death-bed or a sweaty-toothed evangelist trying to stretch “Jesus” into a three-syllable word. Rather, I’m convinced that I can tell the truth about my life and heart to my friends and, even more so, my Redeemer, and take my chances. God prefers, I am sure, the unsavory among us.

Thus, I invite you to pray for us in our very real moments of desperation as well as victory, and remind you that when you pray for me, to remember those whom the world—and above all the allegedly godly—despise or ignore. Take your chances with the self-important and the righteous. I have rarely found comfort in their numbers. But when you draw near to the outcast, the broken, the misunderstood, the unknown, you draw near the Redeemer.

And that is good news indeed.

Thank you for your friendship. Remember those who have no name.

Love, dwight

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