Cancer is a marathon, not a sprint. I’ve already been in the medical pipeline for six months, and *if* I get accepted into a clinical trial, it’ll be six more months.
That’s the *best* outcome.
But after months of phone calls and emails, after more than a thousand driven miles and dozens of doctors’ appointments and five cds (and six figures) of imaging (not to mention two eye surgeries and a course of radiation therapy), I may not end up in a trial after all.
Blue Cross is refusing to cover clinical trials in any way–even though the care offered by the trial is standard-of-care for my disease, the medication would be given to me for free, and there is *no other available treatment of any kind* to prevent the metastasis of OM. (As one article put it, “the overall survival rate of OM hasn’t changed since the 1970s.”)
Perversely, the trial won’t accept me without insurance–even though my parents could cover the costs. (I don’t want to. My God, I could buy an entire house with the same money. But it’s either that or just stick my fingers in my ears and sing lalalalala. That’s about what they had in the 1970s to treat this cancer, too.)
If I get into the trial, it may prevent metastasis, or it may not. Regardless, it would mean ten trips to Philadelphia over the next two years; it would mean taking chemo pills for six months; and the treatment might disqualify me for other trials and treatments down the road. In short, it’s zero fun and potentially an exercise in futility. But my only other option is to do nothing and pray that, for the next five years, my quarterly scans stay as clean as the one I just had.
I got to enjoy that clear scan for less than a day before having to commit to the decision to try for this clinical trial–before gambling my health (and possibly my future) on the generosity of a major corporation.
Cancer is a marathon. All the profound work that goes into making the runners safe in an actual marathon–fixing roads and blocking them off, rerouting traffic, providing police and EMTs along the route, the organization–that’s being done by my family and friends. Clear scans will be my aid stations along the way. But it’s really goddamn hard to run with insurance tied around my feet.