July Update: Me and Gore both want an recount.
Yesterday morning I drove into Philadelphia to “University City” for my monthly meeting with my team of doctors/nurses on the Revlimid drug study. To get right to the point, the news isn’t good.
My UPEP counts (the protein that shows the level of Myeloma in my system) are again up--way up.
For comparison sake, before starting the study last September my counts were approx. 22. In October they were 11.95, November 5.08 and before Christmas, after just two months on the Revlimid study, they were down to 2.04. Between December and April, there continued to be a dramatic reduction, with the big drops (good) accompanied by smallish increases every other month (not good), creating a graph that looks like a steep, but jagged mountainside. At 0.15 my April counts were the lowest since my diagnosis, and when they went up to 0.81 in May we weren’t worried--I guess after all the ups and downs in the winter we’d gotten used to the yo-yo thing, and fully expected the June numbers to decline again.
Instead, the June (6/7-8) tests produced all sorts of circumspection and elusiveness from my doctors and nurses (very out of character), insisting to me that while my numbers were up, a change in the protocol/method for analysis somehow made the numbers untrustworthy, and so they needed me to do all my tests over again. OK, but first tell me those “unreliable” initial numbers.
Do the tests again.
And so, the week after our little vacation in Maine in mid June, I once again spend a day (6/24) in “house arrest” doing a 24 urine collection, delivered the next day at HUP (the Hospital at the University of Pennsylvania) where as a delivery fee they took more of my precious bodily fluids--about 10 vials of blood. I returned to HUP today (after once again repeating the tasks of house arrest yesterday, and again paying a delivery fee of another 9 vials), where I was told that the results from the “make-up” test (from the 6/24-25 collection) were consistent with the first June tests--3.43.
You know what really sucks? I feel good. I’ve been golfing a bit. My shingles-damaged neuropathy-laden feet are improving (I can go for walks). I’m in decent shape. And I’ve finally got some traction on my writing and have a new retainer for the summer with an NGO doing some communications and marketing work for them, so we have income
C’est la vie, right??
Suck it up, Dwight.
So anyway… immediately, as of yesterday morning, the team supervising me took me off the Revlimid study. This means they are un-blinding it too--which means that by as early as tomorrow or perhaps as late as next Monday or Tuesday I will find out if I was getting the Revlimid or if I was on a placebo.
Because, of course no one working on a study like this here at HUP knows which of their patients is getting the study drug and which are getting the placebos--thus a double-blind study. While the medical, lab and patient care aspects of the study are controlled by the various participating study/university hospitals (in my case, controlled very well by HUP), the administrative aspects of the study are controlled very carefully and tightly by Celgene, the drug company developing Revlimid--and they alone know who’s getting the Revlimid and who’s getting the placebo.
But as I told you in previous updates, through the initial six months of the trial everyone--and I do mean everyone--working with me in the study believed, to the point of nearly dismissive, unanimous certainty, that I was getting Revlimid and not the placebo. There were certain--certain I tell you--mostly because my blood counts (hemoglobin and white cells) were behaving in ways consistent with earlier Revlimid studies. Until at least May, there was no doubt about it: I was getting the drug.
But since May, and now that my counts are up and I’m off the study, those same doctors are all, once again, equally uncertain.
Every one of them, it seems, is grasping at straws for me--especially straws labeled “Norman Vincent Peale,” “Robert Schuller” or “Clinton Campaign Media Advisors.”
Honestly, if it wasn’t my incurable disease (and so close to a big election), the flip-flopping would be funny.
And it just goes to remind us that almost all of it is alchemy anyway; all those fancy machines that go bing? They’re just the modern version of three old ladies, a cauldron and iambic pentameter.
And as for what’s next? I dunno. At least I dunno much, anyway.
But for now, anyway, here’s what we’re looking at:
There may be a correlation between my falling and rising Protein (UPEP) counts and the dosage levels of the Decadron (steroids) taken in the Revlimid study. Basically, my counts started rising after we decided in April to halve my Dex dosage from 40 to 20 mg/day. (We did this because I am a big baby and had been griping about the side effects of the steroids, side effects which are both annoying and many, but--and it’s important to hear this turn of phrase--not so annoying that I can’t live with them.)
And so, the second guessing begins.
But here’s another thing I know:
If it turns out that I have actually been on the placebo, the standard operational practice for the study I was on would be to put me in a new study where patients only get Revlimid; no placebos, no steroids, just you, me and the drug.
In many ways, this would be good.
But, given the bit of possible pro-steroid logic above, it might not be.
Bubble, bubble, toil and trouble.
Yep, we’re about to begin a few weeks of “dueling scenarios,” with everyone--everyone--offering theories and explanations and diets and drug cocktails to explain what went right, what went wrong and what might still might happen.
I can hardly wait.
Now, before I go on, let me be clear: I genuinely like my doctors and their staffs.
No, check that. I adore them.
They are, to use a hyphenated, if not technical term, if-I-was-rich-I-would-shower-them-expensive-gifts good.
But I gotta tell ya: I am not looking forward to this coming “Dwight-as-a-guinea-pig” poke here and prod there and “here-take-this-but-be-sure-to-read-the-fine-print” phase.
If it keeps me from becoming a cadaver, fine, whatever. Prod as needed. Poke however necessary. But please, only as needed, only as necessary.
And so I’ll meet with my study team in the next few days, take a look at the un-blinded word from the good folks at Celgene, then pull out the cauldron, er, drawing board, shrug our shoulders, get back to it and start figuring out what to do.
Actually, the “drawing board” phase begins this morning (July 7), in just a few minutes. I have a standing appointment with my other oncologist, Dr. Michel Hoessly, (“my other oncologist”--add that to the list of phrases you never want to say) for a bone-building drug/chemotherapy called Aredia, and after that he'll do a bone marrow biopsy--a procedure where they put you face down and then using a long, hollow needle about an eight of an inch thick, bore into your, uh, pelvis like it’s the Texas countryside and take a sample of the liquid in the bone (this is called an aspiration), the bone itself and then bone morrow.
After the biopsy I may get a “full skeletal survey”--basically that's getting x-rays of literally every bone in my body to determine if over the past few months there has any more bone damage caused by the Myeloma. I say "may" because getting a full set of x-rays requires lying on a hard table, and that's usually not on the list of things to do after having your pelvis "tapped." The x-rays may wait a day or two.
(For those of you who are wondering, yes, the biopsy procedure hurts. A lot. But it only hurts for five minutes and then it’s over. I guess I’m past the dread part--the first biopsy was terrifying--but now I just lie there and go with it. (Thinking of England??) The worst, weirdest part now isn’t the pain (which is blunted by the topical anesthesia), but rather the actual physical sensation of feeling and almost hearing the needle thing pushing, piercing, puncturing the bone. It's creepy--but sort of interesting/cool at the same time. And so, another little lesson after 40 months with the C-word: You do what’s gots to be done.) br>
But here's the problem: so many seem to know exactly what to do.
Far more than the medical uncertainty leading to competing medical alchemies and experiments, the most maddening, patience-testing aspects of the coming months (and the past 3 + years) are the well-intentioned lay-people--especially well-meaning people of faith, whether that faith be in Jesus or heath-foods supplements--who take it upon themselves to corner me and tell me about something that they are absolutely positive will change me life. I can’t even begin to tell you how annoying that is. I can hear them now….
If only you’d have this coffee and mayonnaise enema…
Take this mixture of mangos, bananas, bat urine and low-fat cream cheese and make a tea.
Or, the worst of them all:
Just say it with me three times:
In Jesus’ name I am cancer-free,
In Jesus’ name I am cancer-free,
In Jesus’ name I am cancer-free.
Listen, I love Jesus. I’m a believer, period. I can say the creed and not wink, cross my fingers or raise my eyebrows. (Jenkins and LeHaye, on the other hand, make me run to the toilet screaming…)
But because I love Jesus, I’m not going to lie to him. I have cancer. He knows it. I know it. You know it. And while clicking my heels might take Dorothy home to Kansas, and while rocking on those same heels might make youth pastors feel like they’re keeping their charge on the straight and narrow, marching on those heels around some fictitious Jericho and repeating a mantra--even a mantra with Jesus in it--ain’t gonna do nothing.
I guess I just don’t believe that “God’s will for my life” has much to do with whether or not I have cancer, apart from this, anyway:
Will we make ‘the C-word’ an opportunity for good?
Will this foolishness be the playground of God?
Will we invite God come and dwell in the depths of our brokenness, and allow this stupid, crumbling-from-the inside-out, expletive deleted disease to be a sacrament--a means, a vehicle, of grace.
Cancer may feel a bit like a nasty ride at one of those traveling fairs that pull into third-rate strip malls in the summertime with their crappy rides and mullet-wearing, slightly-scary (in that lock-up-your-daughters kinda way) carnies announcing everyone’s a winner at their fixed carny games, but this isn’t even that special.
It’s just life.
But it’s a life where the Spirit really, really wants to dwell, to come along side.
I remember the week that I was diagnosed, sitting with Sheri at our dining room table together and praying the prayer that I’ve since shared with this list dozens of times:
If we have to do this, then at least let it be a chance to “make beauty out of ugly things.”
(And yes, it’s almost worth it just to have seen my mom quote Bono.)
Since then, we’ve seen that prayer answered in many ways, in our lives, and in some of yours as well.
And so, because of that demonstrable faithfulness, that prayer continues.
Pray for us, and when you do, remember those who have no voice.
We love you.
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