NY1

We met with NY1 yesterday. It was great to see him again, despite the circumstances.

To give you an idea of this guy’s stature within the sarcoma community, I frequently feel like a quasi celebrity as I make the rounds of other doctor’s offices, simply by virtue of the fact that I have been his longtime patient. These other doctor’s immediately defer to his opinion and marvel at how his prior work on me was buttoned up with plastic surgeon skill.

Here’s a summary of what he had to say:

“We have no magic bullet.”
“Chemotherapy is of limited effectiveness and WILL make you feel bad.”
“It would be difficult to recommend to someone that’s feeling and doing as well as you to do something that’s going to make you sick.”
“Radiation may have a benefit in shrinking the tumors at some point.”
“The tumor in your heart is the biggest concern. It may be weeks, months, or years before it creates a serious issue. When and if it does, consider a debulking operation at that time.”
“The kidney issue would be better addressed by installing a stent in the ureter than by debulking of the offending tumor.”
“I suggest you continue doing what you’ve been doing. When and if symptoms get worse, you can reevaluate.”

Given that he didn’t recommend any particular treatment plan, I asked him about several alternative approaches, sneaking in mention of NY2 among a list of other modalities.

“I am a big believer in the power of the mind. If you believe that a treatment will help you then I suggest that you do it. I would only caution you against offshore treatments that involve intravenous delivery – that can carry a high risk of hepatitis.”

So there you have it. Carte blanche to do whatever I want. And no particular recommendations. Freedom to do as I choose, with no guilt for choosing one path over another. Yes, I can read between the lines here. But I still feel great about my prospects. It’s gonna be a helluva ride.