Slow start at rehab . . .

Day Two at rehab has been a whole day of exercises in frustrations, repeat of Day One . . .Bob's had to pass on several therapy sessions for various reasons: nausea, exhaustion, pain, plain and simply not up for it . . . I'm beginning to question whether acute rehab was too lofty a goal for Bob, given all he's gone through this whole year. See, the intent of acute therapy is to prepare a patient to go home, with the ability to function independently ("independently," within the scope of reason for each individual, of course). Two weeks is the typical time frame in acute rehab. There might be additional in-home or outpatient therapies to follow, but the ultimate goal is to go home, safely, functioning. To achieve this, a patient is expected (based on assessments done by physical medicine and rehab doctors and therapists) to tolerate three hours of PT and OT a day, with exercises and other activities that build strength, endurance, teach adaptive measures, how to use adaptive equipment, if needed, to achieve said independence. A quite aggressive level of treatment, but successful, for those who are physically ready for such treatment.

Based on what I've observed over the past two and a half days, I see that while Bob's spirit is willing, I don't know that his body is quite there yet. I was very excited and optimistic when we were told he was assessed to go to acute rehab, but now that we're here, I don't know if it's the appropriate level for him. Too much, too soon? As I told the doctors and therapists yesterday, it's not like he's only recovering from a lengthy, complicated surgery, which in and of itself, has introduced a whole new set of issues to deal with. He also needs to rebuild an entire year of wasting away, attempt to reverse the effects of a cancerous tumor that rendered him essentially completely debilitated, counter the ravages of chemotherapy, of two massive heart attacks and countless complications that came along for the ride and are still hanging on. Is it possible to do that in two aggressive weeks of therapy?

As I mentioned before, Bob's body is a faint shadow of the lean, muscular, very able-bodied person he was a year ago. His beautiful runner's legs and strong, defined arms have shriveled to limp, shaky appendages that tremble and threaten to collapse under his own weight (back down to 114 lbs, btw). I hold my breath and stand close by, ready to catch him, as he struggles to keep himself upright on a walker, painstakingly making his way to a wheelchair, to the toilet, to the bed. It still takes at least one other person to help him sit up and get to the edge of the bed from a supine position. He can't bend over to put on his shoes, he can't get himself to the bathroom, would not be able to shower on his own . . .when I start to think of the minutia, the daily little tasks we do mindlessly, every day, I wonder about Bob's ability to do them, so soon. Not to mention the big things we need to do, just to get through our days . . .

All that, and he's struggling with ongoing nausea, lack of appetite, his nutritional status has been so compromised since the surgery, hasn't been able to regain the motivation he had the month prior to surgery. He's plain and simply not hungry, the few times he has eaten a meal, he can only take in a few bites before he feels so full. As in Thanksgiving pig-out full. I'm sick of the nutritionists and dietitians coming in and telling us what he needs to do, offering disgusting supplemental "nutrition" in the form of thick, sugar-laden, chemically heavy products. We know what he has to do to get food in, but just can't do it. We're trying smaller meals, breaking things down to small portions, more frequently, but even that doesn't seem to help.

The nutritionists keep pushing supplements, but when I look at what they offer, it's such crap, so full of chemicals, artificially, sugar-laden, chemically enhanced calories . . . and the menu at the rehab facility is of the bland, uninspired, super-processed school lunch calibre. Yesterday, I asked Bob if there were any foods that sounded appealing, things I could bring in for him, to get him to eat. We came up with a list of things—home made soups, whole wheat pancakes, more fruit, turkey-avocado-tomato sandwich . . . he said to me yesterday, "Jen, I know what I have to do . . . if only you could live in my body for a day, to know what it feels like, to not be hungry for anything, to have this constant, bloated, full feeling, to feel like every time I eat even just a few bites, to constantly feel the need to throw up . . ."

"What did I do before, before the surgery, to get over this," he asked me yesterday. Ummmm, I think it was the threat and very real prospect of tube feeding through your stomach that did it, I tell him. All the docs were pushing for that, and you were adamant against it. Maybe try to conjure up that attitude again . . .I ask the doctors if maybe something physical could be preventing him from eating. They don't think so, as he's having regular bowel movements, no diarrhea, isn't throwing up everything he eats, so he is getting some nutrition, just not enough to sustain his health, much less to help him heal, recover . . . if this goes on another day, Crazy Wife may need to make an appearance . . .

They have talked about TPN and tube feeding again. The doctors and therapists say they will monitor Bob's activity levels very closely over the next few days, that they won't force him to do more than he truly is capable of. That sometimes, for some people, the first several days are very slow-going, but often, patients take everyone by surprise and take off, after a few snail's pace days . . . but that, if he truly is struggling to maintain the rehab schedule that is expected in acute care, he may be downgraded to subacute, or perhaps back to the hospital, to address the nutritional status . . .

I stayed home this a.m. to meet with our realtor; Penny and Jim came up yesterday and will stay for a few days. They went in early to be with Bob while I met with the realtor. We're kicking around the idea of putting the house on the market again. We had just put it on the market this time last year, when Bob was preparing to start his new job, thinking we wanted to be back in the city, closer to work, less of a commute, etc., but once the Krazy Karnival ride started, not even a month later, we pulled it off, as it was too much to take on, with everything else. . . now, the reality is, with neither of us working (I will likely go back soon, at least part time), living out in the sticks, so far from doctors, etc., with winter looming around the corner, it makes me sick to my stomach to live through a repeat of last year. Long winter, lots of snowfall, endless trip to the U . . . I being the only able-bodied on in the house to shovel, snow-blow, grocery shop, walk dogs, get Bob to and from appointments many times throughout the weeks, trying to work in between. . .

As suspected, our realtor brought in specs about the surrounding area, and it's still a horrible market. But that's no surprise. But, tough times call for tough measures, and we need to weigh the pros and cons of both situations—ride it out here another year, or bite the bullet, cut the losses, and simplify our lives exponentially by moving into the city, renting for a year or so, take some time to recover in many, many ways . . .maybe that's easier said than done . . .

On a plus side, this morning of Day Three of rehab, Bob got a shower. A real-live, honest-to-goodness, cleansing in the shower, with lots of assistance. He said it took a long time, but felt so good. Hasn't had one since before his surgery. Any cleansing has been at most, sponge-baths in bed or sitting in a wheelchair in the bathroom. After a few weeks, that just doesn't cut it any more. . . and this morning, he was eating some of the breakfast I'd sent along with Penny and Jim—whole wheat pancakes, a nectarine, a veggie sausage . . .got the "school lunch" packed for the other meals of the day, and need to hop in the shower and head in. Later. . . xxoo!