Submitted by TLHines on Tue, 08/07/2007 - 16:52.
So, after several appointments, scans, consultations and such, here's where we're at.
Pretty much where we started.
Like most, I'm sure I had the illusion, at the beginning of this whole strange trip, that there were easy black and white answers to every medical dilemma. You know: "Oh, you have strep throat? Here's an antibiotic." We come to expect this from our medical establishment, and from our trips to doctors. We go to them with a problem, they figure out exactly what it is, and know exactly how to treat it.
It's scary, when you think about it. It makes us feel as if we're entitled to answers.
Going through something like an indolent lymphoma diagnosis teaches you how very little we really know about the human machine. We can described what happens quite well, but we run out of answers too soon when it comes to how or why.
I'm not railing against the medical community at all; I'm amazed at the advances and treatments we keep seeing every day, and I'm convinced we'll continue to see new diseases being cured in the coming years.
What I am saying, if you'll allow me to wear my philosopher's hat for a moment, is this: our hubris--thinking that we can understand everything as humans--really points out how very little we truly understand. We'll never understand every aspect of our existence, our environment, our own bodies.
And so, I have a disease that really falls into a gray area. There's no real consensus on what to do. Do you treat it with an intent to cure (or, for those uncomfortable with mentioning "cure" in the same sentence as "indolent lymphoma," an intent to induce a durable remission), or do you view the disease as chronic and simply intend to manage it?
Depends on who you ask. May even depend on the day you ask them. And, sometimes if you ask, the answer will be "both."
As I related before, I enrolled in a clinical trial for Bexxar, a radioimmunotheraphy drug which has shown some pretty amazing results. I was booted out of the study because of a high CD19 count. Since then, I've been trying to determine exactly what the significance of that high CD19 count is. No one seems to know, for sure. I've been given a number of kind-of-sort-of answers, ranging from the need to match a control group with the same range, to higher risk of infusion reactions, to potential treatment toxicity.
I've found another clinical trial, in which I may get Bexxar or its counterpart, Zevalin. As I said at my most recent oncologist appointment, this strikes me as a "Coke vs. Pepsi" trial: they're both pretty much the same thing, efficacy-wise. But there's a gray area here, as well. I'm finding that clinical trial listings aren't always up to date. This trial is listed as Johns Hopkins, and is listed as open and recruiting patients...but I have to confirm this with both emails and phone calls to Johns Hopkins. (I'm waiting call-backs and email-backs.)
If that study doesn't pan out, I can certainly go with the vaccine trial--the trial I've been looking at since the beginning. I love that study; I'm just trying to avoid some pretty heavy-duty chemo as my first therapy, if I can. (Although, to be honest, it seems as if this heavy-duty chemo may in the long run be the best first-line choice, depending on who you ask. Again, one of those "up for debate" questions.)
And so, for me, it comes down to something that might seem a bit surprising: faith. Hey, I know all about the debates of science vs. faith, but I'm not all that interested in them. I believe in science, and I believe in faith. They're not opposite sides of a coin for me.
And so, I have faith that all my research, and all the things happening to me--including this protracted state of limbo--are happening for a reason. They're forks in the road, leading me down the absolute best path for me.
And so, I have faith that the treatment I ultimately choose (or am able to have) will be the treatment that produces the best results for me specifically.
And so, I have faith the doctors I've chosen to work with are the best matches for me, and will guide me according to my risk tolerance and expected outcomes (instead of simply their own).
And so, I have faith.
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