Wednesday, March 25, 2009


While the date of my departure from the hospital remains undetermined, I've at least made some progress. They removed one of my chest tubes yesterday with no dire consequences, so they pulled the second tube out about half way today. If nothing bad happens, they will remove it all the way tomorrow, watch for 24 hours or so, and then work on sending me home.

Of course, if the lung immediately collapses after removing the last tube, we're back to where we started, only with fewer options. Presumably, they would install a small chest tube with a one-way valve that I would probably keep more or less permanently.

Meanwhile, I'm dealing with discomfort and anxiety.

I felt like I had been riding along a more or less steady track of healing since I had the VATS and pleurodesis last Friday. Removing the first tube seemed to speed that along even more. Relocating the second tube, however, dramatically increased the pain I'm suffering. My scale for pain these days goes a little like this: aware of pain but can distract myself easily from it (four), highly aware of pain and finding it hard to shake from my consciousness (five), pain dominates thinking (six), pain is bad enough to create ongoing desire to shout or cry (7...) I've spent most of the last several days at three or four with occasional forays to the fringes of five. Today has been five and six pretty much all the way.

And the anxiety? We're wondering what this ongoing stay off-drug means for the study, and we've been receiving contradictory (or perhaps "evolving" is a fairer word) answers from my doctor.

The big question for us has been: We're scheduled to return to NY for a checkup and the 12-week scan next week. Do we still have to go on those dates, or can we reschedule? The big question for Dr. BT has been: Are we eligible to stay in the study at all? Is this pneumothorax possibly related to brivanib, in which case it would be a disqualifying severe side-effect?

It looks like he's pretty much answered his question. The penumothoraces have been an ongoing problem so there's no reason to believe that the drug caused them. So if we're still in the study, what do we do about next week? I had hoped (and even believed, based on my addled interpretation of some conversations) that the study clock froze while we were off drug and I would have my scan a couple weeks after restarting the drug. The doctor doesn't think this is true. About the best he can offer is a scan on Friday (when we are at least in town) and either skipping the required doctor's visit, counting one of our many in-patient visits as a brivanib study visit, or perhaps even drawing blood in Burlington.

This seems awful and depressing for too many reasons to get into right now -- I'm waxing on with a lot of verbosity but very little lucidity -- but I hate the possibility of coming back so soon and I really hate the possibility of going in for a scan having missed a third of the drug I was scheduled to get. I hope there's another way.
Original post lacked one of the highlights of the day: A bedside visit from a 130-pound bull mastiff named Lily. In fact, it was an in-bed visit from Miss Lily, who was happy to nestle herself among the pillows and blankets (so much as such a majestic animal can "nestle"), absorb some petting, and fall into a deep, companionable and apparently dreamless sleep.

I also got a nice massage via a free hospital program. Unfortunately, my upper back was killing me at the time so I didn't get all I could out of it. But it was still pretty good.


Elsa D. said...

Hang in there, soon they will remove your last tube and your pain and anxiety levels will drop to zero. I wish you all the best.
My next trial will be with a PI3 Kinase at Dana Farber.
A hug

Anonymous said...

I think what you're calling 4 or 5 on the pain scale would be most people's 8 or 9! Sending you home-returning thoughts daily...