Sunday, October 25, 2009

Search for a cure.

I actually read the front page of the paper today, drawn to it because of an article on MD Anderson - a mecca of sorts for cancer patients. Part of me was excited to read it, to learn of it's hopeful research and treatment, and part of me was fearful I'd learn of something experimental for hemangiopericytoma's that we had missed out on. In our research we heard mention of MD Anderson when we pressed for places that might have something experimental that was promising and while we wanted no one else to be plagued with the same disease, when it comes to a rare cancer, misery loves company - only for the simple reason that with disease, numbers mean funding and research. We knew MD Anderson had multiple cases of hemangiopericytoma (He - man - geo - peri - cy - toma) and that alone made it an alluring destination for a fresh set of eyes and ideas. But it wasn't an option. We had phoned them, I had a list of all of the reports and scans needed, but you cannot go unless you're a certain number of months between treatments and you cannot go while on any sort of regimen. The most excruciating aspect of the actual fight against cancer is the obvious: Time. And when you're fighting for your life, the thought of refusing treatment in order to attempt something else further down the line is a gamble with death. Pure and simple. I had spoken to the NIH, had information on trials, we went to Dana Farber in Boston for an opinion and MD Anderson was on my wish-list. Forget about the question of what you'll do about work, where you'll live or how you'll go back and forth to Houston, the concept of what might be there was worth it. The article was inspiring because it's entirely devoted to all things cancer, and they are at the forefront of critical research. It was also devastating because it acknowledges that there is yet no cure and positive results often mean extending one's life by months.

I was desperate to find a cure for Alan's illness. I would have gone to the ends of the earth to stop it's progression. And that is another struggle - you become obsessed with research and the quest for an answer and it occupies every sleeping and waking moment. Just the other day I used a purse I hadn't used in over a year and on a piece of scrap paper inside, was the name of a drug. Obviously I had read about it somewhere and written it down - the kind of note taking that becomes second nature when you're searching for any port in storm. When I came across it for a moment I worried I had neglected to look it up, to find out about it's potential for Alan - but I let it go, trusting that had it been an option, it would have been explored. Whether Alan would have benefited in Texas or not, I'll never know. Thankfully, what I do know, is that doctors talk. They exchange notes, share findings, and gather at conferences - Alan had excellent doctors thinking out of the box so I have to rest assured that no stone went unturned. We ended up at MSK because we were told that there was technology there that he needed that Columbia Presbyterian did not yet have. It took a selfless doctor to admit that, but thankfully, he did. Sadly bureaucracy and funding can limit even the finest hospitals.

I remember Alan cracking a joke during a visit to the radiation oncologist, having to do with Ted Kennedy being able to sail and live largely while top doctors scrambled to provide him with ground-breaking therapies. As it happened, they both ended up on the same chemo, and the Senator's prognosis (though a different tumor) wasn't any gentler. But it is exhausting navigating an uneven and poorly run health care system, insulting to consider that money or lack thereof could influence the length of one's life, and bottom-line, unfair. Health care is discriminating and Alan had strong opinions about it. He was furious at one point when we decided to move him to a private room because the nursing care was so poor on his floor - he felt it was unfair that he had that option. And yet he also felt it was fair for doctors and hospitals to charge what they did - the system had to pay for itself. But even with excellent insurance, Alan was cheated many times. He was repeatedly denied scans when he desperately needed them, hospital stays had to be fought for and when he did get scans the angst that went into getting them approved added insult to injury. Most of the time I was the one showing desperation, not Alan. He was the one with the sentence but it was I who openly and frantically sought the answers. He showed up to every treatment, surgery, scan and follow-up, he went to work and came home and loved and lived and did it all over the next day. That's the most admirable fight I can think of. So when I read of the patient who has shown up for sixteen, week-long stays within a nine month period, on the front page, my heart is glad she's getting some recognition from others beside her family and friends. And I hope she has years ahead of her.

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