Three (baby) Steps Forward...

Feeling much better today than I did earlier in the week, and am even starting to make some progress towards being discharged, but there are also still a couple of big hurdles that have to be leaped, and I still don't quite have the "hop" to get up and over them.

Good news is that the Fentanyl patches really seem to be doing their job; went off the time-release Morphine drip earlier this weekend, and today we were finally able to unhook the Morphine-on-Demand, and switch over to pills for "breakthrough" pain relief. So I'm no longer plumbed for narcotics (although the patch does give me a steady base of relief), and as a result I've no longer have to wheel an IV pole around with me wherever I go, which gives me a FANTASTIC sense of freedom.

I'm also making some progress on the mobility issue in general. Moving around in the wheelchair, and transfering myself from the bed to the chair to the toilet(for instance) is getting a LOT easier, although it's still not something I can do quickly, in the middle of the night. Hence I'm still taking my showers down the hall in a shower seat, and the imfamous "bedside commode" remains my nightly accomodation. Still can't bear any weight on my leg for any significant period of time either, and when I move wrong the pain is still excruciatingly incapacitating, and lingers for a long, long time. So I try to do that as little as possible, while I wait for the benefits of this radiation therapy to kick in. Must confess, after ten full sessions I'm still not seeing much of a tan. Maybe I glow in the dark instead....

My aunt Mary Lou arrived yesterday safely on the Red Eye from Seattle to Boston, took the bus from Logan here to Portland, found the apartment without any trouble, let herself in with the key we had mailed her, dropped off her bag, found her own way to the hospital, dropped by my room to let me know she was here, and went back to the apartment to take a long nap while I went about my normal daily hospital routine. Today she explored the city and ran a few errands for me (like picking up my mail from my study at the Eastland) - again completely independently and with only minimal directions from me. I'm really looking forward to having her here for the next few weeks; her independent,adventuresome, self-reliant spirit has always been an inspiraton for me, and the fact that she is also a cancer survivor (15+ years now!) gives me confidence that I will enjoy similar success.

Today I was also able to get around to having my Living Will and Durable Power of Attorney for Health Care signed and notarized, and finished mailing out the last of the formal invitations to my May 4th Installation Service to local colleagues who are not part of our immediate Ministerial Chapter. I'm also finally starting to get around to making individual calls and e-mails to personal friends at a distance - people I wish could have been the first to know, but who I've been unable to contact personally because of the problems I've had here at the hospital getting on-line with my own computer. The word is spreading slowly through this blog and the grapevine. But my inability to contact so many of my best, lifelong friends has been frustrating, to say the least.

The biggest frustration though has been around this entire problem of being discharged from the hospital! My apartment is only two blocks away, but with my mobility restrictions it might as well be on the moon. My study at the Eastland is much more accessible, but will still need to be modified considerably before I can live there with the level of mobility I have now. There have been marginal improvements every day, and I'm told that the treatments I've received will continue to show me additional benefits for several more weeks, so I'm optimistic I'm not going to be stuck in this chair forever. But that still means the next step is probably a Rehab Facility, rather than directly home again.

Meanwhile, because of something the doctors saw on my CT Scan last Monday, I'm scheduled now for a second Bronchostomy tomorrow. After nearly three weeks in the hospital, all of which I've spent on immune-suppressing steroids, it looks like I may have picked up an opportunistic infection in my left lung, which (until it can be cleared up) will also prevent me from beginning the chemo to attack the tumor on the right. So, more tests and more pills and more waiting -- a "setback" I think they call it, although if you need a bright side at least they don't think it's malignent.