Anticipation: Making Me Wait

Hi friends:

It’s been a while since my last update, and to be honest, there’s not been that much to report, until now.

Not that I haven’t tried to have something to tell you. Two weeks ago on the Tuesday after Easter I met with Dr. Luger and the rest of the team supervising the Revlimid trial I’m on, and gave them blood and my regular offering of 24 hours worth of urine, upon which they perform some kind of Shakespearean alchemy and determine the level of the UPEP protein in my system, which is the myeloma “marker” protein.

Lots of UPEP is bad. Less UPEP is good.

Usually it takes about a week to get the results back, and so the next week when I spent most of Wednesday (the 22nd) at Dr. Hoessly’s office (my “other” oncologist) for my regular “infusion” of Aredia, the bone building drug I get each month, we were already anxious about our pending test results. (OK, I’ll be honest: It was driving us nuts. We were close to desperate to find out if the disease was advancing or if the drugs were beating it back since the March test results had shown another spike upwards in my UPEP counts. Add to the elevated counts the facts that over the last month or so I had done battle with a few too many annoying side-effects and that another UPEP increase might mean that they’d take me off the trial and start talking bone marrow transplant, and you had both Sheri and I pacing impatiently. I’ll put it simply: We don’t want to do another transplant.)

Just as I was about to walk out the door the office manager called me over and said they’d just received a fax from Dr. Luger—my protein numbers were in. I sat with Alice for a second and looked over the numbers and determined that it looked like the counts were up.

Damn.

I called Sheri on my cell, had a good cry and then drove home, where I called and left a message on my parents’ phone, and sent a short email to a few friends, seeking commiseration.

Then Joanne, my Revlimid nurse called: Oops. Wrong numbers.

There had been some kind of snafu at the lab, and they had sent the “total” protein count, not the specific UPEP counts. The “total” numbers were constant, and while they wouldn’t have the full results back for a while, they were pretty sure that this meant that my UPEP counts would be “steady” too—a very good thing.

Phew. Called Sheri back. Phew again. Second message on my parents machine. Second emails withdrawing need for commiseration. Phew a third time. Then bitterness. I wasted a good, steroid-fueled cry!

And then more waiting, each day with the same email to Joanne—“any word from the lab?”—and the same answer—“not yet.”

Joanne is a very patient person.

And then, finally, after almost two weeks waiting for the right “report” I received the following note from Joanne on Wednesday night:

Hi Dwight - Your UPEP results are back. The number is very good. It is 0.15. This is an incredible decrease. I went to Dr. Luger to get her opinion before I sent this on to you. She said it certainly looks as if that is the result. If by some chance it is inaccurate, we can still be sure that your UPEP results are certainly not any higher. It would be very unusual to get an inaccurate result, however, I never say never.

This is amazing. So good in fact that no one believed it without double checking.

So they’ve all double checked. And yep, my counts are now at the lowest they’ve been since we’ve known that there were such things as UPEP protein markers to check.

Now, you get these updates because I either trust you, like you, you asked to get them or a combination of these reasons, so I’m going to assume that you are at least somewhat happy to read this news, and so I at this point I invite you to utter an appropriate ejaculatory phrase of joy, thanksgiving and praise:

· Yowsa. (nope, not good enough.)

· Wow. (nope, too pedestrian, too pre-adolescent)

· Yippie ah yeah… (too Bruce Willis)

· Hallelujah!. (over done, but at more than 3000 years old, it’s hard to argue with the classics)

· Glossalalia? (perhaps perfect, save one thing—I won’t have a freakin’ clue what you’re saying!)

You get the point.

We’re pretty happy.

Now, if only the powers that be administering the Revlimid trial could allow me to take the drug without the steroids, well, it would be close to a perfect week. Truly, while with one side of my heart/brain I’m overcome with near giddy joy, the other side is far too aware of the fact that my battle with the side effects of the Decadron—for instance, I’m writing this at 1:08 a.m.—is keeping me from being as productive as I need to be.

Can you say “wired” boys and girls? Can you say “he’s acting like he’s on methamphetamines”? You can? Good.

Steroids are bad, boys and girls, steroids are bad.

In all seriousness, the side effects continue to be nasty, but given this amazing news we soldier on. I mean, it’s got to be an easy price to pay in order to be able to say this to any of them….

I AM NOT DEAD

Tee hee.

For the record, here are my counts from the last few months:

(Pre study: July 2003--approx. 2.5 gms; September 2003--approx. 21 gms)
10/22/03 11.95 gms
11/25/03 5.08
12/22/03 2.04
1/20/04 2.81
2/17/04 0.81
3/16/04 1.27
4/13/04 0.15

This is worth a celebration! Between my parent’s 49th anniversary (5/7), our upcoming anniversary (5/13), my birthday (5/25), the pending visit of Sheri’s folks this weekend (mine were here at Easter), the visit the following weekend by my sister Sue and her husband Jim from Hong Kong (5/8-12), and, of course, on 5/5 we have Cinco de Mayo, we’ll find some time to toast Revlimid, the University of Arkansas, Celgene (the pharmaceutical that developed Revlimid), my nurses past and present, my doctors (Hoessly, Luger and my amazing GP Marjean Brauch), my wife who keeps me alive, and anyone else we think might deserve a glass.

Like I said: Hallelujah and stuff.

Thanks for your prayers. Seriously. They seem to be working.

(Actually, they were working when my counts were on the rise. I’ve had my moments over the past 3 years, to be sure, but there’s never been much more than a millisecond of questioning… I’ve been convinced that God is leading and guiding us through this journey, no matter good news or bad.)

So, regardless of whether these notes are happy or sad, please keep praying.

And, as I have asked for three years now… if you remember to pray for me, please, remember to pray as well for those who are voiceless in this age of such immense noise, the powerless and the nameless in a time of endless celebrity and immodest familiarity.

We have so much beyond our needs, and yet we delight in so little of it.

That is our decadence: not so much our incredible, disproportionate abundance, but how little of it we genuinely take pleasure in, how little of it we actually love.

Pray for those nameless, voiceless, powerless throngs, and then pray for all of us in our soulless wealth—that we would be moved by their plight, and we would learn to love our neighbor.

Then wipe your eyes, get up off of your knees and raise a glass for them too—because God longs to join them in all that is delightful and good.

We love you.

dwight

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