Saturday, December 26, 2009

the rest of our Christmas

We four guys walked over to an Italian restaurant called Nino's, which turned out to be something of a disappointment. A dessert run to Cafe Luka, where Dad and David got their cheesecakes and Sean and I got chocolate mousse cakes (Sean had decided to abandon Dr. Atkins for Christmas), did much to relieve that disappointment.

We went back to the hotel, ate dessert and lounged around for a bit, then headed over to the hospital around 10:30PM. We stayed until midnight, holding Mom's hands, twiggling her toes with our fingers, and talking to each other.

Part of our conversation was about what was to happen next. With Mom still unable to breathe on her own and with the cancer multiplying ever faster inside her head, what were our options? Ultimately, we decided to do a bit more research into clinical trials-- at New York Presbyterian (since we're here already), or at Johns Hopkins, or at Duke University, or at M.D. Anderson in Houston. We decided to look for glioblastoma trials geared toward treating people near the end stages of the cancer, and agreed that it would be best not to get our hopes up. We knew we would have to work quickly; because the cancer is now so pervasive inside Mom's brain, the recent MRI will probably be out of date within a week-- no longer an accurate representation of the current state of the cancer.

We also agreed that we wouldn't subject Mom to trials that were overly invasive, i.e., requiring surgery or a large number of incisions. As we decided long ago, Mom's comfort and quality of life would always be paramount.

After a while, I had to ask, "Is all this crazy talk?" Dad's reply didn't exactly address my question. He said, "An outside observer might call this 'quiet desperation.'" He may have been right.

Whatever we decide to do, it will always be with an eye to Mom's comfort, happiness. If that ultimately means letting her go, then so be it. But right now, we all feel somehow raw about our experience here in New York, as if a solution had been dangled before us, then arbitrarily whisked away. As I told my family, a cynical part of me wonders whether Dr. Boockvar decided not to accept Mom because he wanted to preserve a perfect track record. He had, after all, initially allowed Mom into the trial by fudging her Karnofsky performance score-- giving her a 60 instead of a more truthful 40. That was the first week of December. He backed down later, a few days ago, upon reviewing her latest MRI and hearing reports about Mom's alertness and responsiveness. That same day, Mom succumbed to massive infection, almost as if she had understood, from Dad's and my faces, that no hope was left, and that it was time to give up.

Of course, I don't know Dr. Boockvar, and don't have the right to condemn him without knowing more about him and his methods. To be fair, I have to concede that a clinical trial needs to be tightly run so as to produce meaningful data, which is why such trials have very narrow and rigid entrance criteria. All of the other patients in the trial are (or rather, were) less critical than Mom before their own intra-arterial Avastin treatments. In Mom's case, the spread of the cancer-- including the now-visible tumor that, by all rights, needs to be resected-- would have made surgery extremely dangerous. Mom's body is so full of chemotherapeutic agents like Avastin and carboplatin that incisions would probably bleed profusely, and wounds would both heal slowly and be subject to serious infection.

As so many people have said before about Mom's situation: it doesn't seem fair. For the moment, I'd settle for having Mom wake up for a day, recognize us for who we are, and offer us each a glowing smile. But now, as things are, even that may be too much to ask. Mom's on her ventilator, and according to the docs, she may be on it for days, or weeks, or forever. Although her signs are slowly creeping toward the positive, it's a race between her recovery from infection and the continuing ravages of her cancer.

It was, by most measures, the worst Christmas a person could have experienced. We weren't delusional enough to expect a good and happy Christmas, but we did what we could, in our humble way, to make it just a tiny bit better for Mom. Our own misery is nothing. Mom's happiness is everything.


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