and more waiting . . .

It's almost like I can't stop updating the blog now, I have to add daily, and I'll be honest here, because you know that's what I try to do here, keep it real. I'm doing it for Bob, now, more so than to keep anyone informed of what's going on. Because of that shift in perspective, I'm so often tempted to quite writing for the "public," as this train wreck really isn't fit for god and everyone to sit back and watch . . .but, it's our only connection, only outlet to the many people who used to be a big part of our lives. It didn't start out that way, but I had no idea that this would be going on for a year, that Bob would be incapacitated for so much of it, that he'd become an often absent presence—oxymoron, I know—a cameo, if you will, in his own drama. Some day, when he's farther down the road of recovery, we'll sit and read all the entries of the blog. He won't recognize himself or most of the events in the story . . . will probably think I've made much of it up . . .

He's still feeling like shit today when I got in to see him, bucket in lap, lying in bed, face so worn, so exhausted, I know he didn't get any sleep last night. Waves of dry heaves jerk his body, he tries to sit up to reach the bucket, but it's hard in bed. I swear, this has been worse than chemotherapy nausea. I ask if he'd like to get up into a wheelchair again, change positions, make it easier if he needs to throw up. Yes, he says. His nurse comes in to help me get him upright, pausing now and then on the way to the wheelchair, allowing him to dry heave into the bucket I hold for him, before continuing. I ask if any docs have been in; the hospitalist doing rounds, but no one from Bob's primary teams. . . soon after, a member of colorectal team comes in to see how he's feeling. Like shit, Bob replies. Doc suggests the NG (nasogastric) tube again, to try to draw out the stomach acid and gas that's going nowhere, and likely contributing to his extreme nausea. Bob painfully shakes his head, "I hate that thing," he says weakly. "I just hate it. It's a bitch to get in . . ."

Doc empathizes, but says once it's in, it can really help move the acid and gas out of the gut, give it a break, and ultimately help Bob feel better. I tell the doc that they've had problems in the recent past in getting the NG tube down, has to be attempted several times, Bob gags and chokes, nearly drowns on the water they have him swallow during the procedure, which is supposed to lubricate the throat as well as help push the tube to the stomach, with the swallowing action. Eventually, ultrasound had to be used, to guide the tube into place—how 'bout they just skip the whole gagging routine and go straight to the ultrasound? He says he'll see if that can be arranged, if Bob is okay with the procedure. I know he's not happy about it, but he concedes. Doc also says TPN (liquid nutrition administered via IV) is ordered to be started later today, to start getting nutrients, protein, etc. back into Bob, as he's still not to take anything by mouth, not even liquids. We're told a team from the plastic surgery dept. will be in later in the morning to talk to us about another option

Shortly after that conversation, Bob's nurse comes in and says transport will be arriving shortly to bring him to radiology to insert the NG. When he's taken away, I wait in his room, reading. Penny and Jim arrive late morning, give me the lowdown on what they did at home before coming in—walked the dogs, chatted with neighbors—so appreciate all they do . . . btw, I was able to stop at the vet yesterday, to pick up medication for Gaia's canine incontinence, and after just two days, it seems to be working! I was beginning to fear our house was turning into one of those pee-soaked homes I see on Animal Hoarders (on Animal Planet), where the urine-marinated floors rot underfoot, owner is oblivious to the powerful ammonia stench as guests gag, cough, eyes water . . . please, someone tell me if it ever gets to that point; I might be oblivious . . . next on the agenda is getting the big one into the shower. Hopefully, over the weekend.

Well over an hour goes by before Bob's wheeled back to the room. He looks even more miserable than when he went down to radiology. Now, he's got another tube running from his body, one that via gentle, constant suction, will draw out anything building up in his stomach out through his nose. Shortly after he is back in the room, a duo of docs from plastic surgery arrive. Ken and Barbie. Ken is the mouthpiece; Barbie must be a student doc. She stands silent, doe eyes attentively wide open, lips pouting slightly, at the foot of Bob's bed as Ken sits next to Bob and speaks.

He tells us he's been brought in by orthopedics, because of the issue of Bob's incision site not healing, and their specialty deals with difficult wounds and alternative treatments to non-healing wounds. hmmmm . . . I could have sworn Doc Rockstar said the plastic surgeon would be a woman, I think . . scans have shown an abscess, or air pocket, in the wound, and due to a number of factors, the wound is not healing as it should—poor nutritional status, scar tissue in the skin resulting of radiation—Bob didn't have radiation this time, I say, confused—no, not this time, Ken tells me; it's residual scarring from way back when he was a kid, from his childhood cancer treatments. . . WTF???!!! Why is this the first time we hear about this? What hasn't the radiation affected, is what I want to know . . . I ask why his team wasn't part of the surgery to begin with, if an incision such as Bob's seems to be notorious for not healing well. His nutrition status isn't a secret, his childhood cancer isn't a secret. Why were there not precautions already in place to deal with this, based on Bob's history, which is well known by all of his primary doctors by now (these are things I should have asked orthopedic surgeon, dammit . . . but see, when I'm told things and then asked if I have any questions, I stare blankly, mind stuffed too full of information, emotions, fears . . . need a day or so to process the info before the questions come)

He goes on to explain that because such a big chunk was taken out of Bob's pelvis, left a big gap for the body to have to shift things, try to fill it in, but if there's nothing there to fill it, an air pocket can form, which can become a breeding ground for bacteria, infection. And, normally, his team isn't brought in until complications arise. How effing proactive, I spit, already annoyed as hell with this conversation, knowing it's going to get worse before it gets better, if it does at all . . . Again, it was no big secret, no mystery, that a big chunk would go—there's no protocol in place for dealing with such a scenario? Around this time, Bob's palliative care doc enters the room, gives a little wave and stands to the side, listening.

Ken continues with what he thinks should be done—a horrific-sounding invasive procedure called a flap surgery, where live tissue, with blood supply in tact, is taken from one part of a patient's body and used to fill the gap; it's not a guarantee, but it may help . . . he's thinking of slicing a chunk of Bob's gluteal muscle—I stop him mid-sentence, as already I'm imagining the horrors, the complications—No you won't, I almost shout at him. Are you kidding?!? Bob's still recovering from an intense surgery that has caused a number of complications, and you're saying you want to subject him to another complicated procedure right now, one that may not even help him? One that sounds absolutely grotesque, not to mention the fact that Bob has no healthy muscle tissue left on his body. . . no, no no . . . this can't be the only alternative for what's going on—I feel tears burning my eyes, my throat tighten as I go on and on about how sick I am of Bob being used for everyone's experiments, that ultimately he's the one suffering, that everyone keeps missing the big picture. . .

And a whole litany of other things, I don't remember . . . I'm openly crying now, asking these people if they know about Bob's history, his whole history, that he's been subjected to enough theories, experiments, hunches, all with horrible outcomes. This time, it won't happen. The whole time, Bob looks so beaten down, so despondent, keeps shaking his head over and over. His palliative care doc jumps into the conversation, as she often does, trying to play hero and save the day. "Bob, what do you feel about this? Do you have anything to say, since this is about you?" He shakes his head again. I'm tired of everything, he says quietly. Tired of it all. I'd just like people to leave me alone . . .

"See what I'm saying?!?" I feel vindicated that Bob confirmed the crazy notions his nut-case wife spews. . . "Bob ultimately pays the price. None of this tinkering and experimenting has helped him yet. None of it. He's worse off now than he was before surgery, and there's nothing, absolutely nothing anyone has said or done to help him. Nobody gives us anything, just keep on experimenting . . ."

"Now Bob," Palliative Care doc chimes in, in her syrupy smooth voice. "Remember when you told me, back when you were preparing for surgery, that it was the one thing that you felt could really help you, but that you knew the risks and knew it would be a long recovery . . ." I turn to stare at her, wondering what the hell she's saying."Was that back in March, before the shit really hit the fan?" I ask. She ignores me, continues, "Remember Bob, what you told me, after the surgery, Bob? That you were glad to be alive?" My eyes open wide. "Okay, that is the most ridiculous, most offensive and untrue thing I've heard anyone say in a long time. You really need to stop . . ." I'm trying so hard, so very hard, to keep the f-bombs in check . . .

I continue to press the surgeon for other options, because what he gave us is not going to happen. Not without consulting numerous other people, not without weighing it against other possibilities. . . wound vac is mentioned, doing nothing (meaning, just opening the wound, clean it out, then simply let it heal on its own) is also an option, but we're told it'll take a very long time for that deep wound to heal on its own, if it's possible. Hyperbaric oxygen therapy is another idea tossed out, though the U doesn't have such a machine, he'd have to be deemed an appropriate candidate for the treatment and he'd have to go to HCMC. "Does something have to be done right now?" I ask. No, it's not immediately, but the wound will need to be reopened and cleaned out again, soon . . .

I'm spent. I'm done. I have nothing more to say and look at Bob, who looks back at me. "We'll leave you two to talk this over. We'll be available if you have any other questions. Thank you . . ." Barbie and Ken exit. Palliative Care doc stays, talks with us a bit more. She apologizes for the comments she made. " I didn't mean for it to sound trite or offensive, I just wanted to be helpful, to be supportive for you . . ." I know, I say, but I don't really know. But no one really, truly seems to understand that this has been going on for too long, far too long. Nearly a year, with not one good day. To say that Bob's "happy to be alive," in this condition, with no end in sight, is an insult beyond words . . .

Met with a social worker again today. Somehow, she caught wind of my current frustrations (I love how useless the word frustration is . . .so sanitized, so full of restraint, failing miserably to tell the real story . . .) and came in to see how she could help. Another venting session. Bob's at everyone's mercy, that there are too many people in the mix, too many people not truly knowing his situation, making decisions when they don't know the whole history . . .she suggests a care conference. I'm not a big fan of them, I say, let me think about it. Maybe if there was a point to one, that'd be one thing, but just to gather up his docs and bitch at them seems impossibly exhausting right now. All of this is after the fact, hindsight, reactive, as it's been all along, since January. . . Bob's a complicated patient, yes, I know that, but that's why people end up at the U. . .instead, his care seems to be entrusted to people who don't know how to treat him, who continually experiment on him, and nothing, absolutely nothing has helped. And everything done has resulted in major crises, and so often the crises arise because of a condition already present—in hindsight, it seems os obvious, that precautions should have been taken to prevent the endless crises Bob has been through—but it's as though the big picture, his entire history is constantly being ignored . . .it's as though they've never seen the likes of him before . . .and sadly, that may be the case. Not many 30-year-out childhood Hodgkin's survivors walking around these days, much less, 3-time heart attack, secondary cancer Hodgkin's warriors . . .

Later in the day, plastic surgeons arrive again, this time, it's Barbie, Ken and another doc, a woman, who appears to be the one in charge this time. Don't know why, but I immediately like her. When she says her name, I recognize her to be the surgeon Doc Rockstar mentioned. She's a plastic surgeon, a wound specialist, this is what she deals with all day, every day, she tells us. She says she prefers a conservative approach to dealing with difficult wounds when at all possible and Bob's wound really needs to be reopened and washed out, as there definitely is the start of an infection, and that maybe contributing to the GI issues . . . her conservative approach is to leave it open after it's been cleaned, to heal naturally, with frequent cleaning and dressing changes. I ask if that will work because he's on his back in bed, can't lie on his side. She said a specialized inflatable bed for Bob to lie in as the wound heals, that'll relieve pressure, will be brought in (again, why wasn't that thought of before . . . I asked about it, had been told the mattress he was on was a pressure mattress . . .guess there's different "levels" of pressure mattresses. . . ) Other options could be considered down the road—wound vac, hyperbaric treatments—once they establish initial healing naturally . . . let's get him in on Friday, she says.

Waiting game. Again. I hate this game.

So, once again, Bob is a great, big ol' conundrum of issues . . . right now, someone needs to figure out if the excessive wound drainage/possible infection of the back incision is the priority, or is it the colorectal issues, and I'd hate to have that job, as we've seen countless times, decisions made about Bob's care, only to have them backfire due to unpredictable events . . . Still, I vote for the colorectal issues, based on what I've been observing over the past several weeks, and in talking with the stream of docs coming in and out of Bob's room today. He hasn't been able to eat much of anything at all, even on a "good" day, since the surgery, even the few days when he felt like he had somewhat of an appetite were quickly squelched by feeling so bloated and nauseous after just a few bites . . .

I told someone (maybe everyone?) that if one more dietician or nutritionist shows up in Bob's room, I'll have a fit. We know what he has to do. He knows it, more than anyone. He physically cannot do it. Let's figure out why.

Today, another x-ray was done on his abdomen and based on that, and the x-ray and CT scan done yesterday, we're told by the attending doctors that there's a bowel obstruction. Great! I think. Something concrete! Then I go and do the stupid, which is ask questions about the bowel obstruction. What is causing the obstruction, and where is it—y'know, that kind of stuff. . . we don't know, and we don't know are the answers we're given. So, what do you do about it? I ask. Right now, just wait a day or so, see if it corrects itself. Oh really? Like majick?!? Sounds like hoodoo to me, but at this point, I'm not entirely opposed to hoodoo. Funny, though . . . it hasn't corrected itself in the month that this has been going on, I say, I mean, it's not like this just happened yesterday. It's been ongoing since Bob's surgery. He has not been able to eat much at all for four weeks . . .

A PA from the orthopedic team comes up, takes a look at Bob's incision on his back, says doesn't look to terrible, don't think we'll have to reopen it and clean it again. Just let it drain on its own, get some antibiotics in, treat the suspected infection . . . Less than an hour later, a resident with the orthopedic team comes in, looks at the incision, says, Oh, that's draining a lot. We'll definitely need to go and open that up, clean it out, probably be sometime this afternoon—Doc Rockstar will have the final say—he should be up later today to take a look . . . . I've given up taking notes a long time ago, peeps.

In the meantime, I ask, since no one can make up their minds whether or not the incision is bad enough to re-do, how 'bout getting the colorectal team in here and assess the bowel situation? That, in my mind, is top priority, though we have yet to see anyone from that team. Bob hasn't been able to eat for a month, his nutrition status sucks, which affects his body's ability to heal in the incision site—we're told this over and over and over again—and I say over and over and over again, he physically cannot eat, hasn't been able to since the surgery over a month ago. That is not a recent development and it's no secret; it's gotten worse over the past few days, but his ability to eat without incredible discomfort has been with him since the surgery. I though it would be a given that they'd be involved already, but so far, by mid afternoon, we haven't seen anyone from colorectal. I call Bob's nurse in, ask her to please call for them. . .

A good friend of mine who works at the U (she's got insider knowledge—kinda the Deep Throat of the U—so I can't give her name or department, for fear of blowing her cover . . .), made a visit to Bob's room this afternoon. We went for a cup of coffee, she heard the latest, then made a call to the colorectal surgeon's office on our behalf, had his nurse get a message to him that he really needs to see Bob and give his two cents . . . momma was right—it's not what you know . . . I also place a call to Bob's primary doc, just to let him know Bob's back at the U, very sick, and maybe he could come act as general contractor for the holy mess going on again?!

In the meantime, Doc Rockstar, the orthopedic surgeon, shows up in Bob's room, hears what's going, on, says that based on what's he's seen, read, observed, consulted other teams on, etc. etc., they'll likely bring Bob back to OR, open him again, clean the incision, maybe employ the use of a wound vac (a device/treatment which I'm not going to attempt to explain other than that it's supposed to help heal a wound in areas that have proven difficult with other measures; check out the link), since the incision is in such a difficult spot to heal, for many reasons—the location, Bob's nutritional status, the blood thinners . . . . However, the wound vac is also not without its issues, so they'll have to assess the situation carefully. Another doc has been added to their team, a plastic surgeon whose specialty is pelvic surgeries and wound healing in these areas (evidently she works with a lot of patients, people who are paralyzed, for example, who have had complicated, difficult surgeries and subsequent issues with healing).

I ask if it's imperative that the incision be opened up right now, because in my opinion, the GI issues are more critical. He said he's already been consulting with the colorectal team, and agrees that those issues need to be addressed first. The incision isn't obviously, visibly infected, Bob is now on antibiotics, so he should (there's that should again . . . ) be safe for at least a few days . . .once again, I say, just for emphasis, that Bob's worse off now, a month post-surgery, than he was prior to it, if that's at all possible . . .

My insider friend calls me and says she learned from his nurse that the colorectal doc has been in surgery all day, a 10 hour job—10 measly hours?!?! CAKE walk, I say! Tell him to get his ass in here now, someone else can take over his job! (total joke, peeps). And, by the way, can anyone tell me why colorectal docs are so freakin' busy?!? Any time we've seen Bob's surgeon, dude's always in scrubs, either going to or coming from surgery. Then again, maybe I don't want to know. But I do know that I've never seen this doc in street clothes. Always scrubs. Which likely attests to the fact that abdominal surgery, no matter the duration, really effs (tryin' to clean it up, peeps) up the body.

He does make an appearance, at the end of the day (5-ish). Great doc, the colorectal dude. He listens intently, tells Bob it's good to see him again, but one of these days, he'd like to see him outside of a hospital bed. Tells Bob he's a ground-breaking patient, as the 10-hour patient he was working on in OR was someone who'd also had a heart attack just before a serious, necessary surgery, had to be postponed until they could figure out what to do. What they did to prepare Bob for his surgery was what was they ended up doing for that patient, the IV drip of Integrelin prior, aspirin throughout . . . unfortunate, that Bob had to be the sacrificial lamb for that procedure, I say. True, very true, he responds. Maybe they'll name a building after Bob when all this is over.

Anyhoo, after looking at the incision site, he says yes, it does appear to be infected somewhat, but that the GI issues are really what's causing serious issues right now. His take is that he really wants to wait to do anything drastic with Bob. That the CT and x-rays show a blockage of some kind—could be physical, stool, perhaps, that just can't pass because the bowels have yet to "wake up" from the surgery. Could be adhesions from surgery, that form within the bowels . . . he recommends IV nutrition as soon as possible, get some nutrients in Bob, as it's been too little, too long. Give it a day, hold off on all food/fluids by mouth, give the guts more recovery time, and see if the situation eases up on its own . . . worst case would be having to go in surgically to find out exactly what's causing the blockage and go from there. If the ortho team does need to go and open up Bob's surgical site again, he gives them his blessing to go ahead and do it, as it won't have any serious consequences on his GI issues . . .

I get it, I totally, completely, utterly get it, that Bob's a complex, complicated patient, with so many layers of issues to address, all often dependent on and affecting the others, oftentimes baffling the experts who have seen anything and everything. I know in my head, that there are no easy answers. Doesn't make watching him suffer any easier. Did I mention that all of this has gone on nearly a year now? Just tonight, Bob said to me, "If someone had told me, a year ago, that I'd be in this condition, I'd have told them they were nuts. Would never have believed it. A year ago, I was flying high . . . "

Few weeks out, marks that year-long milestone. An anniversary I don't care to celebrate.

Back to the U hospital, to that damn room with the view. . .

Bob was moved back to the U hospital late this afternoon. Has had this ongoing nausea/bloating thing going on, since post-surgery, but has gotten worse, not better, over time. So bad that he hasn't been eating much at all these past few days, absolutely no appetite. God knows he's given it the ol' college try, but nothing, not even food brought in from home or take-out has sounded good.

I got to the rehab unit late this morning, and found Bob sitting in his wheelchair, plastic tub in his lap, looking utterly miserable. Said he's been nauseous since he got up, has thrown up once already, has been dry heaving since, bringing up nothing but foul looking/smelling bile. I asked Bob's nurse if she could get a doctor in to see Bob right away. This has gone on too long, he's not eating, feels like shit, it's interfering with his therapy. . . and maybe, just maybe it was too early to send him to acute rehab, with all the layers upon layers of shit going on with him . . .

Doc comes in (same hospitalist who saw Bob post-surgery), exams him, listens to us, orders an abdominal x-ray and then says, yes, she thinks he should go back to the U, where he can be followed more closely, figure out what's going on for sure. Could be a bowel obstruction, could be an infection, could be both or something else entirely. On top of this, his incision keeps draining copious amounts of fluid, just won't stop, dressing has to be changed several times a day (they keep telling me this is "normal." Today, I finally say, this is not normal. Someone needs to address that, too. And the swelling in his right leg/foot.

So he's back at the U, back in a room with a view of the river. Now the trees are really turning. In a week or so, they should be full color. I had to run home, let the dogs out, feed them, clean up the lake of pee in the kitchen that Gaia's been leaving daily . . . need to get her to the vet, soon . . .then back to the U. Bob's in his room, back up on 6B, doc is in with him, getting the lowdown. I ask if he's seen the x-ray results. He looks for the results on the computer, says nothing showed up on the x-ray that seemed out of order. I asked if an x-ray is the best diagnostic tool to show anything amiss. He said a CT scan would be better, but it would require contrast, taken orally and/or by enema, and they don't want Bob taking anything by mouth right now. "The path of least resistance" is what he wants to do. Let the stomach rest from any kind of food, digesting, go from there. Yeah, but this has been going on way too long. It's not like it's a sudden development, I say . . . since surgery, he's complaining of this . . .

11:30 p.m. At home, I got a call from Bob's nurse. They're taking him down for a CT scan of his abdomen tonight. . . she calls back maybe half hour later, says that the CT scan confirmed there's an obstruction of some kind. Not many more details than that right now. More tests tomorrow.

A day in the life at rehab. . .

Tiring days at rehab . . . (sadness, that Amy Winehouse is such a train wreck, isn't it. . . so gifted, so love her music . . .) Bob gets no rest here at acute therapy—PT, OT, doctors, nurses, nutritionists, dietitians, a host of others stream in and out of his room, all day, every day—even Saturdays and Sundays—checking on his progress. During the day, that is. After 5 p.m., AcuteRehab turns into GhostTown. You could roll a bowling ball down the hallway and not hit a soul.

A daily routine goes something like this: After being wakened several times to reposition throughout the night, Bob is up at 7 a.m. to remove the compression wraps (above left) and

contracture boots (right) that have contained his legs all night (yes, he wears both). The compression wraps keep the blood flowing in his legs and help prevent clots by inflating and deflating, pulsing blood through his limbs, since he's horizontal much of the day. The contracture boots—aka the electric blue Ace Frehley's—keep Bob's feet at a 90 degree angle when he's in bed, to prevent shortening/tightening of the Achilles' tendons. All this together, think: KISS meets Flashdance . . .

. . . and into TED stockings (Thrombo Embolic Deterrent socks)—super-tight stockings that squeeze the bejeezus out of his legs, to increase blood flow and prevent clots. Bob's still experiencing post-surgery edema (swelling) in his right leg; an ultrasound was done on his right leg the other day, because of the increased swelling, to rule out a clot. Thankfully, none was found, hence, the socks. He's progressed immensely since the first few days, but still nowhere close to what I'd be comfortable with, in bringing him home. Some days, I'm amazed at the progress, others, I'm puzzled by the three steps backward . . .

So . . . 8:30 a.m. is usually when the fun begins, and doesn't end till around 4 p.m., alternating sessions between PT and OT, from 30, to 45, to 60 minutes, with a short rest between therapies . . . often, those rests are interrupted by doctors, meds, vitals . . .

Depending on who's torturing Bob at the time, the sessions include upper body work alternating with lower body, varying the exercises based on what he needs and what he's able to do. Might be some walking during one session, a recumbent bike another, maybe some steps to master another time. Some days, it's light hand-held weights and a set number of reps. . . seems like nearly every day, he returns from his sessions and mutters, "They're trying to kill me . . . " before melting into his bed for a good couple hours . . .

We have a care conference set for Tuesday, to discuss his progress thus far, to see what everyone thinks; "everyone" meaning all the above mentioned, in addition to Bob, me, and his parents, if they want to be part of the conference.

Will keep you posted . . .

Who snuck into rehab and swapped yesterday's Bob with today's???!!!

Okay, so I walk into Bob's room around noon today, heart a little heavy in my chest, expecting to see the zombie-like man I left last night. So. There he is, sitting in the bathroom in a wheelchair, with real clothes on—sweats, t-shirt—kinda forgot what he looks like in street clothes since he's been sportin' the hospital chic look for nearly a month now . . . freshly shaven (shoven? hmmmm . . .), combing his now long-ish (relatively speaking) hair in the mirror, barely looks at me as I bend over to kiss him, as though I'm getting in the way of his grooming. Sorry, Fonzie . . .

His OT greets me, says they got a shower in this morning, it went really well—took a long time, Bob interjects—but feels so much better, looks so much better, he does admit. Said it took longer to Saran wrap his incisions and PICC line than it did to actually shower. But he's brighter, more alert in the eyes, voice is clearer, stronger . . . said he'd eaten one of my whole wheat pancakes, an organic nectarine for breakfast, had sessions with both OT and PT already this morning, and was now ready to relax a bit before he ate lunch.

I tell him I'll be out in the lounge with Penny and Jim while he finishes with OT, and will come get him shortly. A few minutes later, he wheels himself out of his room and down to where we were sitting. Yesterday, I was the one doing all the wheeling for him . . .

We sit in the lounge of the rehab unit for a while, chatting, gossiping, shooting the breeze with Penny and Jim. The whole while, Bob is alert and present with the conversation, not nodding off once, as he had all day yesterday. Eventually, we wheel back to his room for lunch: a turkey, avocado, tomato and Swiss cheese sandwich on sprouted bread with mayo, and a pear. He peels the innards out of the sandwich, eats that and the pear, but can't do the bread. Says it looks too heavy . . . after lunch, he still seems so alert and alive, so I ask if he'd like to go for a walk outside, get out of the building and explore the grounds a bit, expecting "no" for the answer. "Yeah, let's do it," he says, instead. I'm telling you, peeps, this is not the man I left last night. Alien abduction, I swear . . .

So the four of us sign the prisoner/patient out and head for the great outdoors. We tool down the sidewalk and a block or so down the road from the facility, Jim pushing the wheelchair, Penny and I trailing behind. We turn around and wheel back up the hill to the campus, continuing around the sidewalks that surround the building. A lovely fall day, beautiful day for simply breathing in the fresh, crisp fall air, alternating between admiring and critiquing the old homes that hug the perimeters of the hospital grounds. By the time we get back, it's almost time for another session of PT. So much for resting between sessions. But when his therapists arrive, Bob is still alert, "with it," ready to go. . . I tell him I'll just wait in his room, I don't need to go to every session he has scheduled (thinking it might just be another painfully unproductive one like yesterday's . . . )

10 or 15 minutes pass when one of the PT's pops back into the room and says, "We need you down in the gym. Bob wants to kick your butt in Wii tennis!" Seriously, WTF is going on???!!! I drop my book and follow her. "You have a Wii here? That is sooo cool! Did Bob tell you I kicked his ass the last time we played Wii tennis? I don't know why he wants to subject himself to the humility again . . . "

So, they set up the game for us, and we play best out of three games. The goal is to get Bob used to being on his feet for longer durations, with multiple movements going on at the same time. He still had the walker to hold onto, but we got through three games, resting between each. A neck-n-neck game, but eventually, Bob slams a good one into the far corner of my court and I can't move my little Wii guy (yes, my wii character was a dude, with a mustache, glasses and sprout of black hair) fast enough to return the serve. He wins. His PTs cheer him on, telling him he was on his feet for over five minutes while playing the game. I congratulate him (Cheater! I hiss under my breath), and we sit for a while as his therapists take notes. He's silent for a minute or so, then turns to me and says, "You didn't let the handicap guy win, did you?" I can't help but laugh. Ummm, no, Bob. Unfortunately, that was my best work—the gimp won, fair and square. . . . he gives me a half-smile.

I stay with him till after 9 p.m., help him to the bathroom and situated back in bed before evening medication time. A little annoyed that it took 15 minutes for a nurse to respond to the call light, when we needed some anti-nausea medication . . . also more than annoyed—pissed—to be precise, when, waiting for his nurse to answer the call light, Bob says to me, "I don't like it when you leave . . . " Why not? I ask, touched by the comment. He tells me that some night nurses have made him walk to the bathroom with his compression wraps (bulky, cumbersome leg-warmer-like wraps that inflate and deflate intermittently, to keep the blood flowing in his legs, to prevent clots) and his orthotic boots on, that kind of stuff . . .

What???!!! I nearly screech—those boots are at least a pound or two a piece, and are clumsy as all hell. The boots would be awkward for an able-bodied person, more so for someone who is weak, groggy from sleep, medications, in need of assistance . . . yes, the head nurse heard an earful from me before I left . . .

Before I make the wrong impression, the care Bob is getting at the acute rehab unit, for the overwhelming majority of the time, is amazing. His nurses and doctors are incredibly attentive, careful, sensitive, but also stress that acute rehab means that they really work hard to build a patient's independence as much as they can, as quickly as they can. And I love, love, love the beautiful multicultural aspect of the unit–his nurses, aides, doctors, therapists come from all over the globe. There's a map on the wall in the hallway asking, "Where are you from?" Pictures of the staff, with pins pointing to Ethiopia. Somalia. Philippines. England. West Africa. Guyana. India. New Zealand. All over the US . . . Makes me miss living in "the city" so much . . .

Unlike the hospital, however, with its constant, frenetic activity, the acute rehab unit is eerily quiet, especially after 5 p.m. Patient count is low, and the patients here tend to be higher functioning, which likely means the staff ratio is also lower. But, I told the head nurse that there are a lot of things Bob still can't do for himself, and waiting 15 minutes for someone to answer his call light is too long. And to make him walk to the bathroom with extra baggage on his feet, when one leg is limited in mobility and the other is still very weak just can't happen . . . I was nice, peeps. Firm, respectful, but nice. Likewise, his nurse was attentive, courteous and said she'd make sure to talk to the rest of the staff working with Bob about my concerns . . . she was extremely apologetic, said she'd make the rest of the staff aware of the issues, that there's no excuse for having Bob walk with the boots and wraps on. None at all. . .

As astounded as I am with the quantum leap Bob made, seemingly overnight, I'm not foolish enough to believe that this is how it's will be every day. Live and learn, huh? This was a good day, an awesome day, and I'm still in blissful wonder of it, so deeply grateful for it. But the day also exhausted him. By his last PT session at 3:45 this afternoon, he was spent. His energy level went from amazing! to I can barely keep myself awake long enough to finish the 1/2 hour session . . . but it did give me hope that maybe acute therapy just might be okay, after all. Then again, that's just today. Talk to me tomorrow . . .

Everyone keeps telling us that so many patients enter the facility in tough shape, but leave light years ahead of where they began. And two weeks is simply the average. If he's not ready to go home by then, they won't kick him out. They'll keep him as long as needed, till everyone, us included, feels he's safe and ready to come home.

As amazed and elated as I am with today's turn-about, my newest worry is the strange, flat affect that's washed over Bob, post-surgery. . . so little emotion displayed, no smiles, no joking, dead-pan expressions . . . not even when kicking my ass in Wii tennis, when normally he'd be gloating like nobody's business . . . I saw a punching bag in the corner of the PT gym yesterday. I'm thinking maybe some boxing therapy might be in order . . .

In spite of the horrific events I've witnessed Bob dragged through over the past year, there is no way I can begin to comprehend the mental anguish he's facing now that the surgery is "behind him" and he's supposed to be "moving forward . . . " none of us is in any position at all to empathize, to relate, begin to understand even one iota of the hell he's been through and continues to plod through. Anything said, is so trite, so absurd, so ridiculous, even . . .

JM & J . . . so much could be said about that whole concept, but it's late and I know I'll be talking in circles for hours on end if I start . . . tomorrow's another day, another opportunity for more progress, more healing, more forward motion . . . xxoo!

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!

New view . . .

The view from Bob's new digs at the acute rehab facility at the U of M/Fairview facility (or would that be the Fairview/U of M facility . . . no one really knows what the deal is, even people who work here, clueless . . . ). Not a great view, but not terrible, either. Green velvet, sunny lawn five stories below . . . hopefully, we'll be taking walks out there before long. Not sure how long he'll be here. Average stay is 10-14 days, but it will depend on his progress, his goals, his insurance . . .

This move forward is taken with immense apprehension and trepidation. We've never gotten to this point before. Many times close, but have been jerked back for multitude reasons . . . a whole year gone by in which Bob has been conspicuously (or not) absent. A whole year of holidays come and gone, the same round of holidays soon to be making rounds again . . . seasons come and go . . . friends, family, colleagues engage in life, take vacations, attend ball games, have babies, start new jobs, try to find new jobs, curse traffic, go to school, paint living rooms, plant gardens, go camping, bitch about work, fight with spouses . . . cycle of life . . . and all Bob's done, for the past year, is fight for his life. No small feat, that, and continues to be . . . tumor was removed via surgery, but the big question is, is the cancer still lurking in his body, in other, unseen places . . .

Right now, Bob still suffers debilitating pain that comes and goes in tidal waves, is still dependent on others to help him move, to get out of bed and into the bathroom, to clean him, dress him . . . still trying to figure out how to live life with a non-functioning limb and possibly non-functioning other body systems, to live with the heavy knowledge of a stealthy, potent cancer possibly lurking in the shadows of organs, bones . . . still light years behind what he was, pre-surgery . . . His body is wasted, a trembling, old-man shadow of the lean, muscular, vibrant soul he was just a year ago. His limbs shake when he stands, his hands fumble when grasping for a toothbrush, a pen, legs falter when taking a step forward. His words become garbled when he tries to force them out . . . He's lived through a horror that very few of us will ever comprehend and shouldn't even pretend to. In one year, he's endured immeasurable suffering, more than most of us will ever know in an entire lifetime. Not even close. A one man holocaust. A one man war. . . and no real, tangible evidence, yet, that all of this has been worth it.

There is no reason for any of this. I've said that before. No reason for one person to endure the pure and utter shit Bob's endured this past year. No lesson to learn, no message to glean, no miracle to behold . . . let's be real. No one will truly change their lives because of what they've read about Bob's experience. Oh sure, we'll gasp in horror, we'll cry some, we'll be moved by his story, certainly, but most of us will go back to life as we know it, a quick little prayer offered up to whomever that we are not he . . . little will change because of it.

Bob is the best person I have ever been blessed to know, hands down. And I meant that in the purest sense of the word, best. He has always lived his life simply, honestly, ethically. Despite his childhood illness, it was never an excuse, a crutch . . . it was several months after we were dating that I learned about his Hodgkin's lymphoma, and that was only because a mutual friend had told me of it, and I had to ask . . . There is no reason for Bob to shoulder the burden of all mankind, to trudge through the horror of the year that has passed. He's no one's sacrificial lamb, there is no "wake up call" to be had.

Each of us has our own journey to travel, our own lessons to learn. I could think of enough people to fill my fingers and toes and then some, who could use a "wake up calls" a helluvalot more than Bob ever needed, myself included. Some who've already had "wake up calls," multiple, even, but have chosen to ignore them. That is not how life works, in my book. We find messages (or chose to ignore life messages) all day, every day, throughout our lives, to fit our personal agendas. It's plain and simple, purely, without reason, life. Human nature, if you will. The sooner we quit trying to ascribe meaning to life events, and simply let them be, the sooner we can move on . . . no God to be angry at, no one to be envious of, no judgment, no punishment, no misdirected fury . . . just life . . .

Soooooo, Bob's been cleared for acute rehab—yea!!!!—and arrived at the facility today, around 11 a.m. Today has been a day of rest, of getting acquainted with the facility, the routine, the "what to expect" kind of stuff. Tomorrow is the real deal, the Boot Camp of rehab, the moving forward. Three hours a day of PT, OT, other therapies as determined. Because his doctors, his therapists, now know what I've known all along, that he's ready, he's ready. In spite of, despite of, the awful shit he's been dragged through for the past year, Bob is ready to get his life back. Fuck social security disability. Bob has said he's never wanted to go back to work more than he does right now . . . right now, at this moment in time, I have very little faith in much of the world. But I do have faith in Bob. Faith in the strength of the human spirit. He rocks it. More than any prayer, any scripture, any burning bush could convey to me. Amen.

New room with a new view. . .

Slow, quiet days at the U of late. . . Bob's orders for the past few days have been to rest as much as he can, limit movements to simply getting in and out of bed into a chair. His surgeons wants him to take it easy and let the "re-cision" heal (that's my made-up name for redoing the incision, btw), thus keeping physical activity to a minimum. He has been doing PT and OT in bed, but no walking or anything too strenuous, until today, when he finally got orders to be able to do some short walking exercises. Makes for some very long days, just sitting. At least he's sleeping a lot, hopefully, to make up for some lost zzzzz's. Says it's restful sleep, too, not exhaustive sleep. Big difference, y'know. .

Yesterday morning, I sat in the corner, reading a book, as Bob's PT worked on some exercises and stretches while he sat in the recliner. She was being extra gentle with him, telling him that she likes to tell her patients that sometimes recovery is like getting onto an on-ramp on the highway, slowly work up to the speed limit a little at a time, five miles an hour, then ten, then 15 . . . "Hell with that," Bob says. "Let's gun it." I nearly spit my coffee across the pages of my book. "Well, that's motivation if I've ever heard it," his PT said, laughing. As much as we laughed I could tell Bob wasn't kidding.

Eating is ever-so-slowly improving. Usually eats a pretty good breakfast—pancakes/french toast and/or hash browns, fruit . . . has been skipping lunch because breakfast seems to carry over for quite a while. Dinner has been take out or me bringing something—last night, I brought turkey meatloaf, steamed veggies, mashed sweet potatoes and cranberry chutney from Good Earth restaurant in Roseville (love, love, LOVE that place! Local when possible, organic, non-processed, honest-to-goodness real food. Something for everyone, carnivore to vegan. If you ever find yourself at Rosedale, make the effort to cross Fairview and have lunch or dinner while shopping. Beautiful grub, man). This a.m., I brought in some homemade whole wheat pancakes, kiwifruit and a yogurt . . . tonight was a turkey sandwich with avocado, tomato, Swiss cheese, on uber-grainy sprouted bread, with sliced nectarine on the side. . .

The powers that be have granted Bob's transfer to acute rehab, even with this most recent set-back of the incision re-do, and tomorrow's (Sunday) the magic day. All the deciding parties are in agreement with sending him over, all the other medical criteria have been met (no more IV meds or nutrition, no signs of infection, the ability to withstand 3 hours of therapy—that may be tough initially, but they can modify that schedule for a few days). I can't help but think it'll do a world of good to get Bob out of the hospital—finally!—and into new surroundings, with activities that will push him forward like nothing else has in this past year. I just know it will.

It's been over three weeks that Bob's been in the hospital. September half over, every day of the month thus far, spent looking out the windows of the room with the fabulous view. . . he's ready for a new one.

"Wow, great view you guys got here. . . "

Why is it that whenever someone comes into Bob's room bearing bad, or at least not-so-great news the first thing they mention is the great view we have of the river, as though to soften the blow of what's to come next. . . we've seen three season changes from this room, entering the fourth. The green of the trees below have already begun to fade, I swear, since this morning . . . if I never see the view from these windows again, once Bob is out of here, it'll be too soon. . .

Bob ended up back in the OR today, as the incision on his back opened up a day or so ago, has been draining considerable amounts of blood, despite attempts to stop the bleeding with pressure dressings, etc. I called Bob on my way to the hospital early this a.m., to see how he was, he responded with this latest development, that his sutures needed to be redone. Initially, I thought it was just quick bedside procedure, but after hearing how despondent Bob was about the whole thing, I called Doc BoHunk and asked for more details. He told me it was a more involved procedure, an actual surgery in the OR, to open the wound, clean it out, check for any infections and close it up again. Because of the location of the site, and the fact that Bob's been up and moving around quite a bit lately, coupled with the copious blood thinners he's on, all contributed to a nice little scenario for complications.

Add this to the past few days of other minor setbacks over the past few days—drops in blood pressure (80/40 range), which sent everyone into hysterics, changing meds, throwing him back on antibiotics, upping his steroids again, to "stress doses . . . " There had been talk of transferring Bob to acute rehab either today or tomorrow, but that's postponed until everything else falls back into place.

Over and over, I'm begging staff to look at his history, look at his charts, quit making changes and messing around with him unless they know his history—have they seen that he has had drops in blood pressure in the past, a situational thing (when getting up from lying or sitting or being more active), when on higher doses of cardiac meds? Does anyone know that Bob's hypersensitive to cardiac meds, and has a history of low blood pressures as a result? Why not decrease his cardiac meds first, before messing with the steroid stuff, or better yet, how about consulting with his cardiology team first? And, how safe is it to keep putting him on and taking him off antibiotics for "suspected" infections that aren't verified? Or, does anyone know his adrenal issues/steroid history? Isn't going up on the steroids going backward—that's what caused his adrenal shut-down to begin with???!!!

I get the patronizing answers, the "yes, we know, but . . . " excuses, reasons, theories . . . so, he was wheeled down to OR around 4 or so this afternoon. Doc Rockstar came in, and in his usual confident, non-alarmist manner, said that he doesn't expect the surgery to last long, and hopefully won't have to open the entire site, just the part that's open and draining. He said that due to the location of the incision (particularly the lower part), it's not uncommon to have some complications with healing. That, along with the blood thinners (he's recommending that the heavy-duty injection of Lovenox that Bob's been getting daily, along with his full-dose aspirin and Plavix, needs to be stopped, to help in the healing process), and the fact that Bob's nutritional status over the past few weeks post-surgery have all impacted his progress. The nutritional piece is that he's hadn't been getting a lot of nutrients, protein, etc, that are critical to help the body heal . . .

The procedure didn't take long, I think maybe an hour and a half or so, when all was said and done. Doc Rockstar came out, said everything went well, nothing critical, that this is something that he's not surprised it happened, that it's actually fairly common to have issues with the location of his incision site . . . that this shouldn't set him back more than a few days, getting into acute therapy, when the time's right. He'll make note in Bob's record for nursing staff to be extremely careful in keeping the area clean and hermetically sealed, for the next few days, and that he'll be monitored very carefully, as it heals.

I'm waiting in his room for his return. In my head, I get it, that he's an extremely complicated patient, with countless layers of issues to address, and that it's so hard to predict from one day to the next how his day will go. But tell that to Bob, who's checked out, mentally, at this point. Sick of this ride. Sick of being told, "just one more hump to get over." Sick of being sick. Really, who gives a shit about the view from here?

Something's come between Bob and me . . .

I feel something's come between Bob and me . . . this is the view I get when Bob is up and out of bed, and into a chair. The room he's in is so tiny and cramped, with all the equipment and furnishings that one can barely turn around without tripping on a cord, a pillow, or something. He has a roommie, too, a very nice man who's very quiet (as is his family), and we barely hear boo from them, except to exchange a few pleasantries when we're coming or going. But adding another patient to the room requires serious strategerizing, getting wheel chairs in and out, getting Bob up and out of bed, etc. In fact, when we bring in a wheel chair, the nurses have to remove half the furnishings in the room, to clear a wide enough path. Seriously. His nurse, one night, said, "If I ever meet the person who designed these rooms, I'm gonna slap him upside the head!"

The past few days have been busy, busy, busy, with three scheduled sessions of PT and OT every day. Just a few days ago, we needed three people hovered around his bed to get him up. Standing at the walker took every ounce of strength he could muster, and pivoting to the chair beside the bed was a heroic effort. Today, Bob damn near swung himself over to the side of the bed, he was so rarin' to go with PT. . . I had to slow him down, as he still can't move his right leg much on his own, and I didn't want him hurting himself in all his unbridled enthusiasm.

A few days ago, taking a few steps forward was a monumental task, requiring at least two

people by Bob's side, guiding, spotting, helping as needed, with Bob grimacing, struggling to keep himself upright on the walker. Today, Bob's PT got him up and walking (with the walker) through his room, out into the hallway and back, without the hip brace (I do need to try to get a pic of that contraption—I put it on myself yesterday, just to feel what it was like. Awkward and cumbersome, yes, but I can see how Bob might feel more secure with it, as it does support the leg and hip, and because he has little control over his right leg at this time, any additional support is good). Bob calls his PT "Vern," after the Asian designer on Trading Spaces. . . "just because he's Asian doesn't mean he looks like Vern," I scold, though I now find myself calling him Vern, too . . . everyone has nicknames here at the U . . . to protect the innocent. And a few guilty, too . . .

Vern is a tiny man—I can only describe him as petite. He's gotta be a marathon runner—I can totally see that, with his lean, slight build, his focused manner. . . and seriously makes me feel like an Amazon woman next to him . . . Vern works really well with Bob. He's been able to get Bob up and out of bed, and get his brace on, all on his own, without issues. He's careful, yet challenging, a delicate balance that he works to Bob's advantage, because he knows Bob is very motivated. Bob was kind of winded after that first walk, and when they got back to the bed, Vern sat him down and gave him a gentle lecture about how it's great that he's pushing himself so much already, that he's so ready to get moving. But Bob also has to "respect his pain" and the fact that even though in his head, he might be willing, his body needs time to catch up . . .

Vern (I really need to stop calling him that, because I know I'll slip up at the hospital one of these days . . . ) comes by twice a day, sometimes getting Bob up, transferring from bed to chair, and/or to wheel chair, or walker, depending on the tasks of the day, sometimes working on strengthening his leg muscles, or on endurance. . . a great guy, that Vern . . .

Bob's TPN (the IV nutrition) was discontinued tonight, so Bob should be on his own, as far as nutrients, hydration, etc. go. Now, I really need to step up the orders to eat more, drink more, all that stuff I haven't been too naggy about, since he was getting the IV stuff. Speaking of food,

Bob ordered French toast for breakfast this a.m. Thinking the toast was called Texas French toast (though seriously, could there be two more divergent cultures coming together? A beautiful thing), I guess we just assumed it'd be a big honkin' serving, especially since his pancake yesterday was the size of a manhole cover. To the right is a pic of his breakfast this a.m. I'm thinkin' Bob got Rhode Island French toast . . .

Still not sure about discharge; they're talking possibly some time this coming week. Bob needs to be off IV meds, which I believe he is, now, just since today. From the U of M hospital, he'll likely head to subacute transitional care (more basic), and hopefully cruise right along to the acute therapy program. And, if things play out right, he can go back to the Riverside unit, which would make things very easy, to stay within the system . . .

Anyhow, that's all I know. Nite-nite! xxoo!

Beautiful lonely night. . .

What a beautiful, lonely night, out here in my outdoor office . . . It's dark by the time I get home from the hospital these days, and tonight, I'm sitting out in my office (first time in a long while), candle glowing, no bugs! Rocco gnawing on a bone at my feet, Gaia's deep rhythmic breathing from somewhere in the dark, off to my right . . . I wonder how that happened, that the days are becoming visibly condensed, nights are cooler, how it is that we're entering our fourth season at the U . . . soon, the trees that crowd the river's side will be slipping into their fall colors. We started this journey in the frigid winter month of January when the river was frozen, the lawns and paths six stories below Bob's window were buried in white, trees flocked in hoarfrost . . .

Now, early September, the lawns are still green, still used by runners, walkers, groups of impromtu soccer games . . . the river still moves barges along, coaxes an ocassional rowing team downstream, ripples and shimmers in the afternoon sun. . . but the sun sets earlier, the nights call for sweaters, the smells in the air are different, in changing with the seasons. I sit alone on our deck tonight, think about Bob, lying alone in his hospital bed, countless nights in a hospital bed, so far away. Everything, is so far away.

Bob did advance to "real" food today, with slight restrictions, and dammit, I can't remember what they call his new diet. I kept calling it low resolution, but that's not right. . . it's. . . it's . . . ummmm . . . low . . . low . . . {she heads over to Google . . . types low res—first entry to pop up below her typing is: low residue diet. That's it!} Seriously, Low residue?!? WTF? I mean, if I really think about it, I get it, but that's probably why the term grosses me out. Some things don't need to be thought so hard about. . .

It's basically a low-fiber diet, with a few more restrictions, as the idea is to slowly introduce foods into his system, to minimize adverse side effects: stress on the bowels, abdominal pain/distention, diarrhea, etc. Therefore, no whole grains, no fiber-rich fruits or veggies (e.g. apples)—in other words, arguably the worst diet on the face of the earth. Pretty much any sort of processed crap is allowed: refined pastas, breads, etc., white rice, sugary juices, jello . . . man, I get the "philosophy" behind it, but it churns my stomach anyhow. I keep telling myself it's only temporary. . . so, Bob had a pancake, a 1/2 a yogurt and a few pieces of melon for breakfast (not eating much, so maybe that's a good thing; he is still getting IV nutrition along with the other food, to keep his nutrient intake up). Breakfast was followed by three sessions of OT/PT (spread out throughout the day, with maybe an hour and 1/2 to 2 hours between) which kicked his ass, knocked him out over the lunch hour so he missed that. Every day, I see the smallest of improvements, an increase in mobility, strength, endurance. Not huge strides, and right now, to Bob, seems like the most tedious, painstakingly thing he's ever done, and surely must think at this rate, he'll never get anywhere . . .

Penny and Jim came up for the day, spent the morning and most of the afternoon with us, and left around 6 or so, to attend a niece's wedding in the western metro region. We also had guests this afternoon in the form of my brother Kurt and his family, who had come up for the U of M v. South Dakota game at the swanky new stadium. They stopped by after the game. Was so good to see the crew, and if my memory serves me well (which I can't say it does, as I forgot my keys in Bob's room on my way to go let the dogs out this afternoon—got all the way to the ramp before I realized it, had to run back, calling Penny on the way to meet me in the lobby for the Key Handoff, then back at the ramp, where I'd forgotten which floor I parked on, wandered around for a good 10 minutes, pressing the lock button on my key chain, blindly following the faint beeping echoing through the ramp . . .) Anyhooooo, I don't think Kurt, Teresa and the kids have seen Bob since all this began. Been over a year, I'd guess . . . despite being wiped out with the PT/OT ass-woopin' sessions, Bob still managed to give the kids a little grief as only he can, chatted a bit with K & T, then promptly fell asleep. . .even though he's not great company right now, I know the little visits do him well—diversions from the monotony of the hospital, new faces that are a change from my ol' mug, day in and day out . . .

Dinner tonight was Bob's favorite from the kitchens U of M food service—parmesan crusted cod, with mashed taters and mushy veggie blend (the mushed veggies are not a favorite—that was my idea, thinking he should add 'em in for color and and an extra dose of nutrition. Bad idea. Had I known that all color, taste and nutrition would be blasted right out of the veggies before serving to patients, I'd have passed . . .). After dinner, we got Bob back into a wheelchair for a ride; went down to the main lobby and outside for a breath of fresh air. The cluster of buildings that surround the U of M hospital create a wind-tunnel effect, and if there's a breeze, there are days where one feels the need for rocks in the pockets when the wind picks up velocity and races around the nooks and crannies of the structures, gaining circular momentum as it passes through . . . tonight was one of those nights. Not the worst I've ever seen, but enough that if one is in just a flimsy hospital gown and lap blanket, it was a tad breezy . . . we went back inside and sat by the fireplace in the lobby, people watching, making small talk.

I'd told Bob I ran into his favorite nurse from 7D the night before, the sweet rocker chick who took such good care of him . . . (all the nurses we've encountered at the U have taken such good care of Bob—I can't think of one who hasn't—but I believe sweet Rocker Chick holds a special place because she was his nurse in the wee hours when he'd had his heart attack back in March . . . he credits her calm, yet swift actions for saving his life. That, and he's always had a thing for rocker chicks. . . ). I glance at the clock on the wall, it's twenty to seven. "Maybe we'll see her tonight—she's doing her streak of 12 hour days and starts at 7 pm . . ." not a few minutes later, a figure sneaks up behind Bob and taps him on the shoulder. Rocker Chick! I know it made Bob's night to see her; we bs'd with her for a few minutes before she had to be on her way to work. We decided to call it a night, as well.

I was able to get Bob from the wheelchair to the bed, the brace off and him into bed by myself. Well, not really "by myself," as Bob did most of the work, I just stood by as spotter, really. I cheered him on, gave him a big high five, he gave me a look that said, "Shut the hell up." I get it. He's in a tough place right now. And rightly so. Facing the realities of what his new reality will be. Right now, his right leg doesn't work, his left side is fraught with excruciating pain, he's still so weak, body's plumbing ain't working the way it used to and don't know if it ever will . . . right now, the surgery's promise of a bright, new future ain't looking great yet, but we're only two weeks out. . . still lots of uncertainties . . .

Who am I to tell him to keep fighting, to cheer him on with all the little baby steps I see? I am in no place, have no point of reference, by which to compare to all he's suffered through, and continues to suffer. I have two legs that work, I can get in and out of bed without three people hovering, grabbing, pulling, pushing, twisting into place. I have bowels that work, can get in a car and drive, go back to work when I want to, can eat what I want, can fall asleep for hours straight . . . He's entitled to the anger, the pity, sorrow, the grieving, and needs to allow that to come out, too . . . all part of the process . . . I still, truly, in my heart, he will come out of this in amazing ways. But it's gonna take a helluva lot of work on his part. That's the hard part. For all the cheering, encouraging, pep-talks I try to give him, I'm not the one doing the hard work. I get the shut-the-hell-up look. Completely. And don't blame him.

I was watching a news program on TV the other night; not really paying attention, until two US soldiers who'd served in Iraq came on, one was a young man who'd had both legs blown off during his tour . . . spent 22 months in rehab at Walter Reed . . . two artificial titanium legs now propel him to run, to water ski . . . and I thought, someone like that young man needs to be giving Bob pep talks, someone who's been through war. Or, perhaps the man I saw as I waited for the light to turn green near the hospital today, in a wheel chair, making a wheelchair to van transfer. By himself. And he was the driver . . . whatever his story is—accident? Genetics? Disease?

A soldier of war. A survivor of a horrific accident, disease, faulty genetics. . . . Guess in Bob's story, he's kinda been through all that, in the past year. Fighting a one man war, caused by the accident of faulty genetics, of disease . . . hence, the "shut the hell up" look. On second thought, I will never, truly get it.