Day 142: Bexxar, or Bexxaren't?

Submitted by TLHines on Sat, 09/22/2007 - 16:35.

Now that I’ve decided on treatment, and now that said treatment seems to be imminent (knock wood, cross fingers and all that), an odd haze of uncertainty seems to have descended. You know, kinda like that kid in the Peanuts cartoons who always had that cloud of dirt surrounding him. Pigpen.

I always identified with Pigpen, but perhaps even more so right now.

So, what, exactly, is this cloud of dust? Well, I think it’s probably natural--a way of coping with all the “what ifs” in a course of action that has no definitive answers. This treatment game is something of a crap shoot/roll of the dice/ turn of the card/your favorite gambling metaphor here; you can do all your research, and say all your prayers, and ask all your advisors, but in the end, you don’t get a definite answer. Make no mistake, that’s scary.

It’s scary to look at treatments and compare figures. Because you’re talking about your life, and when you see something has say, a 75% success rate, well that’s not the odds you really want. A 75% chance of success means a 25% chance of failure. Sure, the odds are on your side, but it’s uncomfortable to look at your own life in the context and perspective of odds. Life should be 100%. That’s what we want.

But then, I’ve said it before: life isn’t always what I want. Case in point: I have lymphoma. That certainly wasn’t on my wish list.

So again, I think my current Pigpen phase is a way of coping with those odds. Bexxar, in a widely-read study of people who received it as a first-line treatment, resulted in a 75% complete response rate and a 95% overall response rate. That’s pretty good, really. Better than, or comprable to, chemo, in fact. So I’m automatically good with those numbers. A 75% chance of a complete respone rate gives me pretty good odds of a complete response rate myself--and if I get a complete response, the odds favor a durable, long (multi-year) remission. Maybe even, in some cases, a cure. Many people are out 10 years or more, and still in their first remission, on Bexxar. Doctors are loathe to say these folks are cured, but I’m not doctor. I’ll say it: I think there’s a good chance a certain subset of these people may never relapse.

So I look forward to that possibility, to being--perhaps--one of those people who gets a good, long remission.

But I have to look at the opposite side of the equation. A 75% chance of complete remission means a 25% chance of only a partial response or no response. Prognostically, neither of these outcomes is devastating. But emotionally, I do think they would be...well, I said it already: devastating. But I have to deal with that, think about those feelings right now. Because this is a distinct possibility. I may, after all this struggle, go through the Bexxar regimen and have no complete remission to show for it. I need to start preparing myself for that possibility. Like a chipped tooth that keeps attracting your tongue, I need to run my mind over that thought’s sharp surface until I wear it down and get comfortable with the new terrain. So that, I think, is what’s produced this cloud...and yes, chipped teeth and dust clouds probably make the list of all-time worst mixed metaphors.

I suppose I make it worse when I start to factor in all the variables. I have a low-risk FLIPI score, and among folks who are low-risk FLIPI scores, the complete response rate jumped to 83%. But I also have limited bone marrow involvement, and among folks with bone marrow involvement of any kind, the CR rate dropped to 63%. But still, with only 3% bone marrow involvement, I’m less than the vast majority of folks testing bone marrow positive so...well, you can probably see what I was doing on the internet until about midnight last night.

On the opposite side of my dual personality, though, I’m actually excited. I’m eager to begin this treatment, as if it’s some new gadget or toy to play with. And I suppose it is, to some extent. At least in the way my mind processes things. And maybe that’s actually healthy. I’ve said it all along: faith is a huge part of this. I’ve fought to have this particular treatment--not just radioimmunotherapy, but Bexxar specifically--and I have to trust there’s a good reason why that is. So there’s the sunshine behind the cloud, if you will: my faith that I wouldn’t be going through all of this for no reason. I don’t believe in, I don’t live in, a universe where things Happen for No Reason. Or, I suppose more precisely, I don’t believe in a universe where things Happen With No Opportunity. It’s a broken world we live in, I think, but not a dead world.

And so, in three days, I head to Missoula to begin treatment. I get to deal with all kinds of fun things I’ll be writing about here in the next few weeks--infusions, a playlist of songs I put together just to receive the treatments, having fun with radioactivity. All of it.

And even if Bexxar turns out to be Bexxaren’t in my case, I’ll keep going on. I’ll trust that the sun will always disippate any lingering cloud.

Because I choose to.

Bexxar

My son , mason, went through bmt and radiation for lymphoma.
Seven weeks later pet scan shows some cancer.

Your artical has given me hope....

Will talk to Dr. Friday about Bexxar.

Egleston In Atlanta, Ga.

Thanks for your inspiration

Jerry

Post new comment

The content of this field is kept private and will not be shown publicly.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Allowed HTML tags: <a> <em> <strong> <cite> <code> <ul> <ol> <li> <dl> <dt> <dd>
  • Lines and paragraphs break automatically.

More information about formatting options