Sunday, January 24, 2010

More to fear, much to learn.

There is a horrifying article on the front page of the NY Time's today: "A Lifesaving Tool Turned Deadly". I had been warned not to read it but, of course, I felt compelled to do so. Despite the fact that the fight we were engaged in is over, I still feel compelled to follow medical updates that pertain to Alan's life, and my life. The fantasy is that it has nothing to do with the treatment that Alan endured, the horror rests in the fear that it does. And then more troubling, I will probably never know. The story tragically illuminates multiple, undisclosed until now, cases in which cancer patients were given fatally errant doses of radiation treatment. Computer glitches accompanied by incompetent staff have robbed many people of their lives - in essence, technology failed and then human negligence sealed the deal. What is most frightening is that never ever in our consideration of Alan's treatment did we concern ourselves with such a threat. We were aware of the risks of radiation and knew it came with its own problems but the illness outweighed the long term risks associated with the treatment. We consulted with doctors in San Francisco, Boston and New York city. We insisted on the "best" institutions and sought out the most highly recommended experts to handle Alan's case. But never did it cross our mind to inquire about software failure, computer crashes or inattentive staff.

When you're immersed in the world of cancer you are well aware of the physics that go into plotting your treatments. Numerous 360 degree scans are taken to zero in on the disease, tattoos are used as permanent markers by lab technicians as targets, a week can be spent plotting and programming radiation doses and beams, molds are taken to further ensure the patient is held completely still during sessions, sedatives are often used to keep patients relaxed and still for what are often excruciatingly long and claustrophobic appointments. I was always in awe of Alan's strength, inner calm and courage - he was subjected over the years to months of treatments. Some sessions lasted ten minutes, some an hour. It required infinite patience and he was heroic. I remember appointments when I'd be in the waiting room and after twenty minutes sometimes a tech would come out and kindly give me or other people updates on their loved ones. Sometimes it was "he's doing fine but we're having trouble lining him up with the machine", sometimes it was "she's having a rough time and we're having difficulty maintaining enough stillness to finish plotting - we'd like to let her go home for the day and try again tomorrow". Sometimes it was "we're getting him an atavan because it's taking us longer than usual". I remember one of the last sessions Alan had, our favorite nurse practitioner, Joan, came out and said "He's having a rough time in there today, he's doing OK now, but do you want to go back there for a bit?" I jumped at the opportunity. To hear that Alan was struggling was unusual but he had been through so many unimaginable trials over the months preceding that it was finally catching up with him emotionally. To hear that he was having a hard time was heart breaking and I was led back to where the techs were. I must say, after reading the article I was fearful of error in Alan's case, but what I saw that day was reassuring. Two techs had their eyes glued to computer monitors and occasionally one would focus on Alan on the camera screen overhead. When patients are undergoing treatment techs talk to them over speakers so they're never meant to feel alone or unattended. I was able to talk to Alan but I don't think I actually did that day. I asked that they tell him I was there just so he knew. I didn't want to make the situation more loaded, I just wanted him to know I was there, watching him and waiting for him.

But with all of the skepticism we have for our doctors and hospitals I don't think many imagine that "state of the art technology" can go awry. And we assume that if good doctors are overseeing the treatment, that there is little room for error. I continue to believe that that was the case for Alan. Yet Alan did not die from cancer. He died from complications from treatment. Generally unexplained complications from treatment. Doctors suspected the complications were inevitable side effects from prolonged treatment and as the disease spread his situation became more and more dire - but I hope, I pray that his overall treatment didn't hasten his passing. The stories mentioned in today's article were horrendous examples and showcased patients that had been blatantly mistreated - I do not think Alan was a victim of similar circumstance. He was a victim of an incurable disease and dangerous treatment that never promised anything. If Alan were here today reading that article he still wouldn't be angry at the injustice of it all. It wasn't in his nature. He'd perhaps want to discuss it with his doctors but then he'd leave it at that. I on the other hand would be ready to call our doctors to reaffirm he was and had been in good hands, I'd have written letters and contacted the president of the hospital just to double check. "Soapbox Susie" is what Alan called me when I ranted about similarly infuriating exposees. Tonight he'd surely call me that. But after reading this article, one can't help but wonder about any radiation treatment that anyone has ever received and it certainly is worth asking about if ever faced again.

Deep breath. Sigh. Must go check on Lily, just to be sure of her.

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