It’s been a tumultuous couple of weeks. We had a visit from Peter’s sister Pam, from Port Elizabeth, South Africa (on the Eastern Cape for those who can’t pinpoint PE). We were planning to have her write a ‘guest entry’ on this blog, but that never happened. Suffice it to say that the three of us (sometimes with Jason and Nina) had many enjoyable chats, and Peter and Pam particularly re their shared childhood and so on.
However, the day before Pam left, we took a small drive to Jordan Lake (Pam’s an avid sailor, as is Peter) on a rainy, foggy day. When we arrived, Peter got out of the car and stumbled, which immediately sent up huge red flags for us both. We decided to see if his legs would improve, as fatigue can do strange things as we know, and with Pam’s visit, we’d had an unusually active few days.
The next day, we drove Pam to the airport, and once again, as Peter got out of the car, he stumbled quite badly, so we left Pam to make her way from the parking lot to the airport, and Peter and I sat in the car while I contacted various triage folks at Duke, and of course, the next step was Duke Hospital ER, once again.
So now it’s 8 days later. Peter was in the hospital for 7 days, and was discharged yesterday (Thursday) to an acute rehab facility in north Durham. So here’s what happened: Peter had severe dehydration, despite our constant efforts re drinking and eating. The diagnosis was kidney failure, although that didn’t actually happen. Many IVs of saline solution and many days later, Peter’s no longer dehydrated, although there’s a constant danger of that. The radiation burn on his throat, which while greatly lessened, still causes him problems in drinking and eating, and clearly that had a greater effect than we had thought. Another issue, which caused the leg weakness, is a swelling on C3 (cervical vertebra), which is worrying, but hasn’t led to a compression or fracture. It took 4 days and many scans, etc., for this to be both discovered and determined. Of course, spine guys (as I call all neurosurgeons, male or female) showed up in their usual less than affable selves, speech therapy people provided swallowing help for Peter (we never knew there were so many ways to swallow), oncologists of course, physical therapy types, and a constant stream of other medical types. We were once again on the oncology ward at Duke, and I stayed 24 hours a day with Peter except for what we thought would be the last night.
And why wasn’t it? Well, Peter had a ‘collapsed fall’ the morning of the presumed discharge, so it was decided that rather than go home, Peter really needed intensive physical therapy in order to regain strength and balance, caused by the problems in his spine. So another night, and then ambulance to the SNF (sniff), or Skilled Nursing Facility. Peter’s on his second night there, and after a very rocky start on Thursday night and Friday morning, he’s ok there, and I’m ok with his being there.
Rocky because said facility missed his meds, and a few other sloppy things, but I raised holy hell with them this morning, occasioning a grand meeting with all the top brass there, and my making many demands, all of which thus far are being met. Demands – a private room, meticulous attention to the meds, including their timing, no snarkiness from the staff (for example, one staff member commenting in Peter’s presence that they had too many folks with neck braces), and so on. I’ve given them a deadline to continue to meet every demand in every detail, or we would move Peter to another facility (arrangements already in place). I have everyone’s cell phone, so does Peter, and I’m sure things will go smoothly from now on.
On the bright side, most of the staff there are genuinely caring people, and the physical therapy is top notch, which is what Peter needs. You know Peter: as soon as he met a piece of equipment and was given a time and a goal to meet, he exceeded it, which made him feel a whole lot better. His days will be spent doing physical and occupational therapy (I now understand the difference – OT involves ‘living’ issues, such as making sure Peter can handle general day to day activities with ease, or with accommodations, depending on his mobility). Well, we don’t know how long he’ll be at the SNF, but we’re confident he’ll emerge from it stronger and with less danger of leg and arm weaknesses.
Neck brace: because C3 is involved, his neck is possibly unstable, so a brace is a precaution until we see spine guys at Duke in a couple of weeks, and a decision is made re keeping it on or not – it’s not uncomfortable, although it does rather resemble a modified Darth Vader.
So it’s been rather frantic. And as if the above hasn’t been sufficient, we have to move, because Peter will not be able to handle the stairs to our apartment for a long time. I’ve made arrangements (it seems as if that’s a continuing activity) to move temporarily into a condo hotel near Duke, which is very nice, and is acceptable both to the Duke and SNF medical teams. I’ll start looking for a new ‘permanent’ place shortly. Sigh…
Last night and this morning Peter had a fairly serious bout with depression, one of the very few he’s had throughout the nearly 4 year history of cancer. He’s feeling better now, still not completely over it, but the PT and his victory over the machine, helped enormously.
I don’t think I have any messages to impart, other than that we’re going through an especially tough time, and the onion of the disease keeps on revealing new layers, and all we want is to put back a few layers. Well, I’m lousy at analogies and that sort of thing, but you get the picture.
More in a while.
Thank you for the update… when you don’t post we fear the worst. As ever both of you keep a very positive view of the events. the power of positive thinking is HUGE! Love, Margie Hlava
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