Day 6: Going Forward

We've had a lot of grief and exhaustion lately. Jean's right leg hasn't improved and she hasn't been sleeping or resting. But we've also got a lot to be grateful for.

Jean got a semi-good night sleep. A kind doctor and nurse gave her some sleeping meds to help her get over the wacky, hyper effects of Decadron, the steroid she's taking to soothe her nerves (oddly enough). She was still groggy this morning, but, thanks to some power naps, she went on a couple of walks. Fewer doctors today, which meant less prodding, which meant more rest.

She started seeing visitors and this really cheered her up. My Mom came from Rhode Island for the day. Our social workers from Mount Auburn, Annabelle and Beth, stopped by for a couple of hours. And my brother Chris and his wife Marianne stopped by. Together, the four of us walked down the hall with Jean for several hundred feet, her longest distance yet.

If you're interested in visiting, or calling, just give Jean a call at the phone number on the Visiting Information page. Don't be shy: if she's sleeping or out of the room, she won't answer (there's no voicemail).

Before I mention anything else, I want to thank everyone for the cards, gifts, and e-mails that we've received over the last few days. I'm terrifically grateful and promise to thank every single one of your personally.

Her surgical incision is healing nicely. She's eating solid foods, drinking lquids, and eating cookies. And she doesn't feel the pain she felt before in her kidney and ureter. There's no question that Dr. Hanto and his team did a great job with the surgery. If not for the problem with the right leg, she might be discharged by now.

We had a long talk with Dr. Hanto today, explaining our frustration with the state of the leg and just venting our disappointment. It's taken us a few days to adjust to the shock. Now we're starting to think about how to deal with it. Dr. Hanto is working with the Neurology and Physical Therapy team at Beth Israel to come up with a plan for discharging her. She'll likely get physical therapy for at least a few weeks. Right now she's still unable to get out of bed or move without asistance.

We don't know the details. Neither do the doctors. We're all just figuring this out. One of the most frustrating human experiences is a group of good, concerned people (doctors, nurses, patients, family) working against forces they can't control and don't know the outcome of. Jean's had this experience with her cancer: rare, no protocol to treat or cure, and an uncertain future. The damage of her leg nerves threw us for a loop over the last few days, but we're gradually regaining our balance and resolve. The same energy that fed Jean's frustration and anger is the same energy that will drive her will and determination to walk and be independent again. Actually, she's always pretty independent.

Posted by gasbarro at March 23, 2006 12:05 AM