Waiting and seeing

I’ve been sick for twelve days now. It’s “just a cold,” except that ever since my leukemia diagnosis I can never really be sure whether a given ailment might be a symptom of disease progression. Because it seems like every conceivable everyday ailment also happens to be a symptom of chronic lymphocytic leukemia (CLL), from fatigue to joint pain to susceptibility to infections. It’s all part of the head-fuckery that one must take on board with this particular condition.

What’s at stake is whether or not I’ll be one of mythic “lucky ones” –  which legend has it make up about 25% of CLL-ers – who never need treatment and live out their normal life spans. Of course, even these lucky bastards couldn’t have known they were in that exclusive club until their dying breath, because at any point during their lives things could have headed south without warning. We get blood work done every three months, and the results are never known in advance. A low level here or a high level there, and the doc might say, “It’s time to treat the cancer.” It’s only in retrospect one can say, “I was one of the lucky few!”

Another question I ask myself is, “If 25% of CLL patients never need treatment, and the median age at diagnosis is 70, does that mean that most of those supposed lucky ones are merely old farts who died of something else before the CLL had a chance to wreak havoc?” I’m 49, so what are the odds that I’ll dodge bullets for the next 50 years?

I see the doc in five days. It’s a wait and see thing, and it always will be. If the blood levels look good, then I’ll know these past two weeks were just a cold from hell. If the levels are bad, then my inability to shake the cold might spell treatment time.

On a positive note, the treatments are supposedly getting better and better all the time, and I could truly be one of the luckiest if a cure becomes available in my lifetime, and many experts think that’s a distinct possibility. Secondly, I channelled some of my anxiety into creating a CLL resource page on this site. Check it out if you’re waiting and seeing, or know someone who is.

Illustration by Kimberly Carney