You're walking
And you don't always realize it,
But you're always falling.
With each step,
You fall forward slightly,
And then catch yourself
From falling.
Over and over,
You're falling,
And then catching yourself
From falling.
And this is how
You can be walking,
And falling,
At the same time.- Laurie Anderson
[ Table of Posts - Oldest to Newest ]
I'm going to fast-forward through the next two weeks. They were filled with setbacks, small steps forward, a maddening stasis, general flailing, all manner of desperate searches for answers and advice on how to proceed. Sometimes our pleas for help were greeted with indifference, but way more often than not they were met with an overwhelming generosity of spirit.This was also the time when my sister's boyfriend (hereinafter “The Boyfriend”) and I started to get to know each other. He actually lives in New York but is in San Francisco often. He'd flown out there immediately upon first hearing the news on or around July 13. I'd met him only once before when my sister was here in New York. I liked him then. As I wrote in a subsequent email to both him and my sister:
She'll probably get pissed at me for saying this, but I think you're probably the first Romantic Attachment of hers that I actually thought was worth her time.... But then I'm her older brother so I guess that makes me a pretty harsh critic, all things considered.(For the record, my sister replied, in pertinent part: “OH SO TRUE!!!!”)
The three of us now formed The Team. Slowly at first, but with increasing focus and -- it has to be said -- with some frenzy, we swung into action.
I found and purchased one online journal article that was a case study of a woman whose situation was remarkably like my sister's. After one year (the article reported), the woman was free of the disease. Naturally, we were warned to not put too much stock in a single case study.
Yeah. Sure. That's exactly what we did. We didn't put much stock in it.
(Actually, the advice is correct. Journals usually publish single case studies only because the outcomes are so remarkable, so out of the ordinary. But still...)
We found out clinical trials existed for treatment of Neuroendocrine Tumors (NETs), and we found out my sister had connections with some people who worked with the drug company in question. (We were advised, however, again correctly, that clinical trials should be avoided until all standard treatment regimens had been exhausted.)
The Boyfriend through old college connections corresponded with a leading researcher and clinician who specializes in NETs. From this exchange we learned that we would do better to focus on the “small cell” part of the diagnosis and not so much on the “neuroendocrine” part.
From this exchange also came the first genuinely (somewhat) good news we'd seen. Quoting an email to a third party, written by the aforementioned specialist:
...it turns out that small cell is actually treated quite differently from the tumors I see in my practice. On the positive side, small cell cancer is often quite responsive to the more traditional chemotherapy regimens as well as radiation -- so it sounds as if the recommendations she has received [Ed: from SCC] are very appropriate and hopefully have a good chance of working.
Finally, after two weeks of running around like crazy people trying to assure ourselves that we were heading down the right treatment path, we started to feel we were in a position to make an intelligent and informed decision on how to proceed.
Comments