Tuesday, May 12, 2009

A Rare and Valuable Resource

One More Test to Go

The good news is the pathology report from the .5 L of bloody effusion removed from around my heart did NOT show any tumors. This is especially good news, because metastasis to the pericardium was the most likely cause of the effusion I experienced. But it's a bit odd; this is only the second time ever my drs have seen this occur and it NOT be metastasis.

And I am still having trouble with my cardiopulmonary system, including uncomfortable chest pains and trouble breathing and fatigue. Still. Yet I am passing the imaging tests. So what is going on? We are 'perplexed but not despairing'. I do have a concern that the effusion was indeed caused by metastasis trying to get in there, and that my body is doing its best to fight it off. I sure was hoping I would be feeling better by now.

My regular oncologist notes I am whining about pain too much, so he has ordered a whole-body bone scan to check for metastasis to the bones. I have coughed so much, I feel like I have a broken shoulder!

My regular and second-opinion oncologists both had suggestions, but there are no standards of care for where I am now. I'm past all prognoses. The second-opinion oncologist tells me I am a "rare and valuable resource," a glorified guinea pig. I tell him, that's what I'm here for: to keep pushing that envelope until it's no longer an automatic death sentence to hear the news you have fourth-stage cancer. He is on the same page as me and my other doctors; keep me going and avoid anything bad happening until the cure is here. And this new oncologist will keep me in mind for any studies that might be helpful to me, too.

So I am going to get infused again with the monoclonal antibody on Thursday, and we will decide on and start a chemotherapy sometime in the next couple weeks (when I'm a bit stronger). Meanwhile, my oncologist has told me to AVOID elevations above 6000 ft and NOT push myself physically till we figure out what the heck is up with the chest pains, etc.

So perhaps it was a good thing we failed last weekend at driving out East Blue Ridge (parts of the drive are definitely above 6k ft). Darn it. What am I gonna do without my beloved mountains?

I guess that means it's time to go to the beach again!

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