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.