September 30, 2003: "Reemergence"

Friends.

A very brief note to invite you to pray for Sheri and I.

As you know, at the end of June I received news that the Myeloma protein indicators in my blood/bone marrow were again quite elevated; this despite 6 months of thalidomide therapy and very promising initial results. My doctors then decided to take me off the Thalidomide and put me on a brand new drug called Velcade (approved for sale by the FDA on May 13) which in clinical trials had shown amazingly positive results—upwards of 45% effectiveness in reducing counts and reversing bone damage. We were very optimistic, and I’d been feeling quite well, aside from a few side effects (head aches, neuropathy). I’d even been out golfing and was exercising every day, and had a lost a pound or two of the Thalidomide weight gain.

Anyway, all this continued until the last few weeks, when I began to experience a sudden, and very steep ramping up of the pain and discomfort in my left hip—very similar (identical, in fact) to what happened a year ago in December when my counts first started going up again.

It began when I was in Toronto doing some work for Visionledd. One morning I was out golfing with Richard Brown, who is the defacto acting Executive Director for that AIDS ministry. It was less than a great round, but more than the bad performance on the links, the thing that made the time together a bit less than the normal it's-just-good-to-be-out-golfing, doesn't-matter-what-you-shoot time was that the during the round I began to have a bit of odd numbness in my left hip, leg and foot. It was more an emotional than physical nagging, just a bit of fearfulness that it was there. I didn't say much to Richard, but I think he understood that I was bugged and perhaps even frightened. That night I was at a Gala opening (School of Rock!) at the Roy Thompson Hall at the Toronto International Film Festival with my best friend Bob, in line for a gala and began to feel the numbness ramping into pain, and without anywhere to sit, it was a bit scary.

The next day I spent time with Visionledd in meetings again, but was sitting well without any real pain, and I let it go. That night I decided to check into Le Germain, Toronto a great, new boutique hotel (http://germaintoronto.com/en/accueil.asp) where I was able to rest my back from a few nights in my parent's guest room and then grab some light dinner on Queen St. West. I went back to the TIFF for another gala (Code 46, with Tim Robbins and Samantha Morton: quite intriguing and economic film-making), and my friend who was to go with me couldn't make it, so I scalped my extra ticket and I went to the line late so I wouldn't have to stand for long. Still, there was just enough discomfort for me to be aware of it and be a tad concerned.

By the beginning of the next week--I went home the day after the second gala--the pain was starting to ramp up. Basically, the situation was that early each day at my desk I’d experience an odd numbness in my foot, then an increasing tightness and severe pain in my calve and then, by day’s end (or earlier if I was on my feet at all), a fairly intense pain in the hip, pelvis and thigh bone--to the point of not being able to stand for more than abut 5 minutes at a time.

Unfortunately, I’ve been around this block a few times in the last 2 & ½ years, so basically recognized it for what it was and knew what was going on. I faxed, then called my doctors in order to fill him in on what was up and to find out exactly how he thought we should manage the pain until my upcoming tests were processed. By the last weekend of the month I began to take percoset again regularly for the first time in 18 months, and started some other meds as well to help control the pain. The last Monday of September I saw Dr. Hoessly (I had had my regular “state of the cancer” tests scheduled anyway) so given the new symptoms Dr. Hoessly just put a rush on the results and scheduled a full skeletal xrays for next week to see if there are any new Myeloma-related lesions on my hip or spine. About an hour ago I got off the phone with him and the results are, unfortunately, what we expected, but perhaps worse.

For comparisons sake, in July, my protein indicator “counts” had risen substantially to a bit more than 2.7 grams, (compared to a normal count of 0.015 grams). They are now around 18. (When I was first diagnosed they were around 36.)

This is, as you might guess, not good news at all.

In the coming days we’ll be meeting with our hematological/transplant oncologist at the Univ. of Pennsylvania Fox/Chase Cancer Center (Dr. Selena Luger) to look at possible options. Pretty much everything is on the table, including trying to find a “matched but unrelated” bone marrow donor for a transplant or finding a clinical trial to part of or heading to Arkansas where the best work on this disease is taking place. When we know what’s next, we’ll let you know asap, I promise.

And, if you’re like me, when you heard this news (or other bad news) you probably said an immediate mixture of scatological, profane and sacred words, an immediate combination of frustration and pure, unfiltered, desperate prayer.

I continue to cling to the notion of a God who not only understands, but actively welcomes that kind of guttural prayer… and responds to it, gleefully.

So, a few things....

Obviously, we need you to pray... for my stupid, mysterious, funny, maddening body (and its equally puzzling blood/bone marrow cells)... for our doctors and their wisdom… for our own discernment... for Sheri as she tries to cope with me... for our family and closest friends as we lean on them... for me as I try and stay focused (distracted by both circumstance and narcotics) and meet my ongoing (and exciting/engaging) writing and work commitments with ghosting and editing for Chalice Press and working with several ministries on communications, fundraising and management issues (and, of course, the related financial/income concerns that lurk should those commitments be interrupted)...

On a practical level, the next couple weeks for me will be about pain management and keeping an even keel so that on the 12th I can fly to Costa Rica where I’m scheduled to give the plenary address at Habitat for Humanity’s Global Communications Conference. I’m supposed to talk about advocacy—my address is called “Hints and Allegations”—and was so looking forward to it on many levels... as a return to the speaking circuit, as a chance to see a bunch of folk I love, as a resume builder, as a decent pay check…. The doctors and I have already agreed that we’re going to do everything we can to make that trip happen, if for no other reason than pure stubborn willfulness...

Yes, I’m back to that again.... How can how we respond to this, regardless of outcome or difficulty, mock the devil—mock that which would rob us of hope or joy or laughter?

My first step, this time around, will be to kiss my wife when she gets off the commuter train tonight. The second will be to work hard on a presentation designed to help people raise their voices on behalf of those in need, those who have no voice.

So, there you have it. Thank you in advance for your prayers on our behalf, and your ongoing friendship.

And thank you for remembering to remember the forgotten when you pray for me, for praying for those without a voice or name. In a world where people are unwilling to pay 10 cents extra for an espresso to help needy kids go to school, where corruption and lies rule the hearts of our leaders, where men are killed every day to defend the interests of the few, we so desperately need those who pray, however strong or weak, focused or vague their faith might be, to begin to become a voice for those on the margins, those whom our society ignores or just plain hates.

Friends, moral outrage is cheap. Righteous indignation is easy. Refusing to buy furniture at stores who sell stuff to people we don’t like is paltry and self-important. But a broken heart.... That’s what I want to come from all of this. I want to mock the devil, revel in my own joy and hopefulness, laugh at my self-importance and have some small sense of how deeply loved are those who suffer alone.

And if praying for me nurtures that in you as well, when then… good. (tho’ I’d prefer to not have to be prayed for at all)

Peace, grace and dirty fingernails.

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