"The Thing Is . . ."

The Thing Is

-Ellen Bass

to love life, to love it even

when you have no stomach for it

and everything you've held dear

crumbles like burnt paper in your hands,

your throat fills with the silt of it.

When grief sits with you, its tropical heat

thickening the air, heavy as water

more fit for gills than lungs;

when grief weights you like your own flesh

only more of it, an obesity of grief

you think, how can a body withstand this?

Then you hold life like a face

between your palms, a plain face,

no charming smile, no violet eyes,

and you say, yes, I will take you,

I will love you, again.

This is one of the most beautiful pieces of writing I've read, next to my own mom's poetry. This is our world, right now. This poem, so sparse in words, sums up the past year in our world, no matter that the author intended it for us or not. I like to think she did. With just a few lines, it says all I've been trying to say with entry after entry, word after word after word, explanation after explanation, falling short . . . this is my treat for you on this beautiful Halloween morning. Enjoy.

The prince and the pea . . .

Here's a picture of our royal prince, high upon his bed of air . . . as if that weren't enough, he demands pillows, lots of them, to prop his legs and feet up, to use as a laptop desk . . . then he demands his servant girl to straighten the creases from the legs of his pjs, or he just won't be comfortable. "Nobody here does it like you do, Jen," he says, with just a tinge of whine in his voice."Oh, and could you bring my laptop over, too?" Servant girl lovingly obliges. The airbed he sleeps in is so high, servant girl has to let the guardrails down and stretch as far as she can on tiptoes to reach the prince, for a good night kiss. . .

Bob's been on the KinAir bed for a few weeks; initially, it was wonderful, when his wound was giving him so much pain. It helps to relieve pressure by constantly, automatically adjusting the pressure throughout the bed, so he doesn't need to be physically moved (though the nurses did do that, for added measure). The downside is, it's a bitch to get out of—we've developed a system where we help roll Bob to his side, then bring his legs over the edge of the bed as he pushes himself up. Ain't an easy task when one's mobility is limited and is trying to get upright on the hospital equivalent of an inflatable bouncy house. Once he's sitting up, we let the air out of the bed so it lowers him to the hard, cold frame of the bed. Then, his feet reach the floor, and he can transfer with his walker to the wheelchair.

Astoundingly, over the past few days, I've noticed that when Bob's ready to get out of bed, he's already slid his legs over to the edge of the bed and is pushing himself up before I'm even at the bedside. Which got me thinking, maybe it's time to ditch the KinAir bed. Seriously. I truly belive that he'd be able to get himself out of a regular bed on his own, with a little practice, of course. I'm sure the air bed is comfy as all get-out, but if the point of being here is getting him ready to come home, there sure as hell ain't a KinAir waiting for him in West Lakeland. . .

Busy, busy, busy day today. I made the mistake of mentioning to Bob's nurse this morning something about getting a shower in. I mean, c'mon, dude hasn't had a real live shower in over two months, since before his surgery; we tried to sneak one in on Tuesday, but there was just too much going on. Today seemed equally hectic, and Bob looked at the clock. Nearly 10 a.m. "Never gonna happen," he dictated more than observed. "I have MIST at 10:30 and PT at 11—you're gonna get the dressing off me and showered before then? There's not enough time." FYI: For anyone who doesn't know Bob, he's a planner. You do NOT throw things into the schedule without first discussing it with him. In his mind, there is no way a shower will fit into this already tighter-than-tight morning schedule. "Maybe Saturday will work better," he says, already dismissing the idea.

But, I'm nothing, if not persistent. See, try as I might to do a thorough job with the bedside baths, there's no way Bob can feel totally, thoroughly squeaky clean like what a good shower can do. It's been too long. I've seen what the simple pleasure of a real shower can do for his spirits, his overall feeling of "feeling better." His nurse picked up on my persistence. She's sofa king awesome. "Battle axe" comes to mind, in describing this woman, to borrow one of my Dad's fav phrases. A woman who means business, kinda pushes me aside so she can do her job (unlike most of the other nurses, who seem to welcome my involvement in Bob's care). But she's also a kind nurse, an efficient one too; when she heard my request, she was all over the idea, never-mind that Bob already had PT, the vac dressing change and MIST therapy scheduled this morning. "It's never gonna work . . . " Bob the Skeptic said, eyeballin' the clock again. "Let's go," said Nurse Cracks-a-Whip.

And so, she was right. Somehow, it all managed to work out. He got his dressing removed, whisked away for a shower, back in—I swear—five minutes, followed by MIST therapy, dressing and vac back in place, and clothes on and ready for PT, all in a record-breaking 20 minutes. {{{takes a moment to catch breath. . . }}} Granted, he was about 10 minutes late for PT, but his PT for the day was also the person doing his MIST therapy, so she just did therapy on the floor, instead of taking him down to the therapy room. They did a nice long walk down the halls of Bob's floor, then back to his room. I'd consider the shower as therapy, too . . .

Then lunch, followed by another session of PT and OT . . . in the meantime, I ran home to let the dogs out, walk them, grab a bite to eat, and got back just as Bob returned from his last therapy session. He told me he's now only doing OT every other day, as they said he's too advanced to be needing them every day. My li'l over-achiever! <3>

I should add that today was also the first day the dressing/vac change was done without the aid of heavy narcotics, and Bob tolerated it really well, just a few flinches here and there. I'd noticed a while back that the Dilauded didn't seem to be helping with the pain involved with the dressing changes and asked his doctor if something else could be used, maybe something topical, since it seems to be more of a wound-related pain rather than the deep-bone pain Bob was dealing with before surgery. This time, just Lidocaine was used, to numb the area of the wound, and that seems to be all that's needed.

We had a great meeting with Bob's primary doc at Bethesda on Tuesday. He's on a mission to get Bob off the narcotics he's been on for so long. "Too many side effects inhibiting your progress," is his primary reason. That, and that Bob may simply not need them any more. Makes sense to me. Pain has not been a big issue, as the weeks go on in Bob's recovery. He can sit, he can stand, he can lie on his back. All things he couldn't do without excruciating pain before his surgery. Any pain at this point is very sporadic, situational, and in the grand scheme of things, not very intense, as far as we can tell.

I told Bob's doc that the palliative care team at the U put the fear of God in us regarding the narcotics, and that they have to be tapered very carefully, and only by them, he rolled his eyes. "Palliative care, in my opinion, has its place, but my specialty is internal medicine. I know medicines, I have to know them, inside and out, how they affect one's body, how they interact with other drugs, how they interact with various conditions . . . palliative care, in my opinion, are doctors, nurse practitioners, whomever, who are very compassionate people who want to ease the pain of patients, but really don't have the depth of knowledge I do, in terms of internal medicine . . . " He said the point of using pain medications is to first find the source of the pain, then prescribe the appropriate medication to address it. "Bone pain is different than nerve pain, which is different than wound pain," he said. "Each requires a different kind of medication to address the source. . ." He waved his hand and gave us the "half-life" of the narcotics Bob's on, how long it should take to decrease each medication. None of them seem to be extraordinarily lengthy. . . yesterday, he made another decrease in Bob's methadone. "If you find you do need it, we can always increase it again, or find another medication that's effective."

As I said, today was the first day Bob tolerated the dressing change without Dilauded. He did really well. And, he didn't have the mid-day, hours-long (e.g., drug-induced) slump that he's been experiencing as a result of the big dose of Dilauded he was getting prior to the dressing change. He actually remained upright and alert all day, until finally, after dinner, he finally starting to nod off. No surprise, he's been up since seven a.m. and going all day, without a nap, without much of a break at all.

I helped him to bed, and as we got him settled, he said, "Thank you, Jen, for pushing the shower issue. It really did feel so good. . ." At that point I decided it was time to take a few pictures of us together "in bed." Hide the kids' eyes, peeps; a racy photograpic montage to follow (i.e. Jen, utterly clueless in the art of cell phone self-portraits. . . )

Let's see if we can finally get this right. . . Okay, here's one (or not)! The very last one! Can you tell Bob's been watching too many episodes of Ghost Adventure (I can barely keep from wetting myself, he looks sofa king awesome! He even had a good laugh at seeing this . . .I look rather ghastly, myself . . .) xxoo LOVE!

Oh, I almost forgot to mention that Bob's 4th grade teacher paid him a visit yesterday. Yes, his 4TH GRADE TEACHER!!! I'm so bummed that I missed the visit—I'd gone home to let the dogs out when he popped in. What a great, unexpected surprise! I think Bob was still in shock, to have such a surprise. I truly think he has no idea how many people have been following his story, have been rooting for him, praying for him, holding him dear to their hearts as he fights his way back to health. . . love you all for that. Deeply. xxoo

Holy wind!

I often wonder, if it were I in Bob's position and he in mine, would he even notice my absence in the house? Since he's been gone—no, make that since he's been ill, which is officially a year now—I have found out exactly how much he did around the house, which was pretty much everything. Makes me wonder what the hell I've been doing all these years . . .

I raked the yard over the past few days, which has been a work in progress. . . I've decided I hate trees. At least the ones with leaves . . . weed-whapped the few spots in the yard that continued to grow in spite of the season changes, cleaned out some gutters (while dangling precariously from a 10 foot ladder on the deck, simultaneously overlooking the 20+ foot plunge to the backyard below), picked up dog poo, wrapped the outside AC unit with a tarp and twine (which was an infuriating, f-bomb-ladened endeavor all its own, like wrapping a huge, awkward Christmas present), changed the furnace filter, refilled the bird feeders and baths . . . last night, I dragged all the patio furniture into the garage, a preemptive strike in preparation for the hurricane-force winds that are reported to descend upon us in the near future.

Now all I have to do is put plastic on the windows, weather strip the doors, hope for at least one more nice weekend to do some touch-up painting around the house outside, clean the outsides of our windows, maybe clean the garage—move the snowblower to the front, the lawnmower to the back. . . I'm tellin' ya, our next house will be a townhouse.

So, I took Rocco on a romp in the back yard yesterday and came upon a tree that had bark torn from the bottom of its trunk all the way up at least ten feet. The bark lying on the ground below the tree was absolutely shredded, like someone or something had violently ripped it from its rightful place on the tree. I stood in horror for a few moments before snapping a few pics with my phone's camera. It's so freaky, I can't even begin to imagine what caused it. It didn't look like another branch had fallen against the tree, didn't look like a woodpecker's work . . . had to be other-worldly, and I couldn't wait to show Bob what I'd found . . . when I got to the hospital, I whipped out my phone, pulled up the picture and said, "Look at this picture of a tree in our backyard! I have no idea what could have done this! The bark was shredded, almost all the way around the tree. . . it has to be the work of a chupacabra, or Big Foot—"

"Or a buck scraping its antlers on the tree," Bob says so matter-of-factly. Oh . . .ummm . . . nevermind . . .

Long days at Bethesda. They work Bob hard, for sure; he may be "advancing" to two sessions of PT and OT a day starting sometime this week. Tough as the once-a-day sessions have been, the therapists think he's ready for more. "I guess that's why I'm here, to get stronger, so I can go home," he said, though his voice betrayed the exhaustion of his body.

Had his wound vac dressing changed today. Every week, they take pictures and measure the wound—depth, width and length. The length hasn't changed much, but already, with the use of the vac and the MIST therapy (an ultrasound wound healing treatment that I'm not even going to try to explain; I've included the link so if you're interested, you can read about it), the depth of his wound has decreased by about half and the width has closed considerably. In just two weeks of being at Bethesda. Pretty amazing.

The dressing change (he's on a 3x/week schedule) is a pain in the ass, because it has to be squeezed in between everything else. On Tuesdays, it's especially chaotic, because that's when the plastic surgeon on staff makes his rounds to see all the wound patients, and they can't put the vac back in place until he arrives, which isn't until later in the day. So Bob's at the mercy of so many others' schedules, who are all trying hard to fit into his already tight schedule. Today, it was "wham, bam, thank you, ma'am" kinda day, with everything starting right away in the morning, and not much time to rest in between: out of bed, dressed, breakfast, meds, vac and dressing removed, MIST therapy, temporary dressing in place, PT (all before noon) then lunch, a short break before OT, then a visit from the plastic surgeon, dressing back on, vac back in place, and before he knew it, it was dinner time. May not sound like a whole lot, but right now, it takes three times as long to do everything, and I didn't even include bathroom breaks in there. . . as Bob likes to say, "Takes all day to do nothing."

I left the hospital early today, while it was still light out, as the winds were picking up. I at least wanted to see any flying debris if it hurtled my way . . . so far, no large limbs have been dropped upon the deck, the roof seems to be intact, and both dogs are accounted for. Tomorrow's an early day; doc makes his rounds around 8 or so, so off to bed I go. xxoo Love! to all . . .

First full week at Bethesda

So. For the past few months, Bob's new favorite TV show has been Ghost Adventures, on the Travel Channel. Three dudes truck 'round the globe in search of haunted places, in which they willingly locked themselves up for the night, and attempt to document paranormal activity, all for the pleasure of the viewing audience. Real deal or staged, it's scary stuff, man. They employ night vision cameras, "spirit boxes" (which, supposedly, capture voices and messages from the beyond with radio waves. Huh? Yeah. That's what I said. Still gave me the creeps, hearing those scratchy words played and replayed . . .), all kinds of real-live ghost-busting equipment. The trio taunts and cajoles the spirits of those who have gone before, trying to get a peep out of the ghostly entities, if they can . . . often, what they get is more than just things that go bump in the night—they're hit, scratched, terrorized with screams, unseen things crashing, objects thrown at them, poltergeists hissing their names, doors slamming shut . . . for a girl who was queen of telling ghost stories at slumber parties "back in the day," (and was even, proudly, accused of being a witch by a friend's dad. The red hair always does me in . . .), I get chills watching this. . . whether or not it's real is beside the point, they do a great job of freaking me out. Maybe the setting in which I watch it has something to do with it . . .

So. I'm sitting there, watching a full episode tonight with Bob, and suddenly realize what's wrong with this picture. Often, the haunted halls of the show are abandoned hospitals, sanitariums, asylums . . . in other words, buildings not unlike what we are sitting in tonight. It occurs to me that when I leave, I leave alone, down three flights to an empty first floor, through a long, deserted skyway to the parking ramp. All. By. Myself!!! When the show is over, after getting Bob into bed and kissing him goodnight, I speed-walk as fast as I can, my index fingers in the shape of a cross in front of me, out to my car. Wait! Was that a baby crying? In the parking ramp? . . .at 9:30 pm? . . . and no one's around? . . . no, no, no, no!!!!!! I am suddenly convinced that the parking ramp at Bethesda was built over the site of an orphanage where all the kids died of an outbreak of cholera in 1898. . . Get in the car, now!!!!! This is why I don't watch much TV, peeps . . .

A long week for Bob. He has PT and OT twice a day; I've sat in on most of them with him this week, to see what they work on, ask questions about his progress, the expectations, goals . . . they started out just coming up to his room, doing some exercises, having him walk a few steps with the walker. On Wednesday, they brought him down to the therapy floor, for a "real" session, and he's done all his sessions there since. He has therapy twice a day, six days a week, usually PT in the morning and OT in the afternoon. For those who are unclear on the difference, PT typically focuses on working the lower half of the body, with exercises and stretches that work on strengthening muscles, increasing range of motion, movement and mobility. OT addresses the upper body, and typically also focuses on daily living skills—dressing, bathing, household chores, etc. There is definitely some crossover in what each therapy does, but often, a patient literally has to start from square one, learning a whole new way to live their life, with a body that has been drastically, permanently affected by the ravages of a disease or injury . . . as one website I read put it, "A patient often says they want to be able to walk again. I ask them, 'When you get to a door, how are you going to open it?'" Learning new ways to do old things . . .

The sessions are painfully exhilarating to witness. From my point of view, I see so much progress, so much strength and endurance already, in just a week and a half being here. My heart swells when I witness the steps he makes, the new thing he's learning to do again, a testament to the vast capacities of the human spirit. But I also see how absolutely exhausting it is for him, how difficult, physically and mentally, to do some of these very simple tasks, things he used to do effortlessly a year ago. To Bob, all the sessions underscore just how much his life has changed and will never be the same again, how much he can't do right now, how much he has to relearn, how very far he is from being able to function in life, even with me by his side, much less on his own at home. . .

Even though I see so many tiny glimmers of improvement every day, and those who see Bob only ever few days (e.g. his therapists) see remarkable improvements, right now, it's not what Bob sees or feels. Right now, what he sees and feels is that he's still so very dependent on everyone around him, so far behind where he was just prior to surgery. At least then, he could get in and out of a car, he could dress himself, he could get himself into the shower, he could move about the house, could go up and down stairs, all of that slowly and with much pain, but he could still get it done. . . at this point, he can't do any of that by himself. Couldn't even put a pair of socks on yesterday. . .

Much of it is being so de-conditioned, having lost so much muscle mass and strength, due to the wasting effects of the cancer itself over the past year, along with the heart attacks and countless other complications that did their part to add to the picture. With that alone, he has a long road get to the point where he was prior to surgery. The surgery itself has presented a whole host of new problems, with the nerve damage, the partial loss of functions on his right side, and all that goes with that. The surgery site right now, and will for a long time, interfere with movements and range of motion . . . he has several tubes running in and out of his body that make it a complicated process to do anything—we have to drape this here, wrap this one over there, making sure he doesn't get tangled or trip and pull something out. It's a delicate, complicated dance we do, to get him out of bed, into a wheel chair, to the bathroom, but one we've choreographed almost to perfection by now. He knows just which way to turn so his IV lines don't entwine with the wound vac tube as I make the instinctive bend and reach to move his Foley cath and tube from the bed to the walker, then he stands, slowly pivots to his wheelchair and sits, as the final draping of tubes wrap around, behind and settle into place. Take that, Dances with the Stars . . .

It took a whole year to get to this point; it'll take a long time to recover. Day by day, step by step . . . Easy to say for me, for someone who isn't in his place, who isn't dealing with all this first-hand. I can put my shoes on. I can step into the shower every morning, I can make breakfast, I can wash dishes, I can get in the car and go wherever I want, without a single thought about what I'm doing, how I'm doing it . . . the other night, we had a pretty intense conversation about all this . . . right now, he's not encouraged by our cheerleading, our happy faces, our "way to go!'s" There's nothing right now to celebrate, still no light at the end of the tunnel for him. Still no idea of how his life is going to be, how much function he'll regain, whether or not his body is cancer-free . . . for us to sit and cheer him on is almost insulting at this point. Who gives a shit if I can sit up and eat by myself? he asks . . . I get it, I totally do . . .

I walk the fine line of being too Pollyanna or being too realistic about all this. I want to be encouraging and positive, because I do see improvement, I swear to god, every day I see him, hell, sometimes even with every hour. But I'm not the one with the broken down body, I'm not the one whose life has been torn to shreds, and handed back in a form totally unrecognizable. The harsh reality is, if Bob's going to get better, if he's going to get a semblance of his life back, the only way it's going to happen is by some huge efforts on his part. And that reality bites, big time. In spite of the horrific shit he's already been dragged through for a year, now, he is the one who has to do the very hard work to regain his life back. The doctors, nurses and therapists and we are here to help, but Bob is the one, ultimately, who is doing the hard work. Who has to do the hard work. Even in rehab and recovery, when he's healing, he doesn't get a break. When people tell me God doesn't give anyone any more than they can handle, again, I say bullshit. People are handed things to them all the time that they can't handle. I see the people in Bethesda with bodies that are equally broken or worse off, even, than Bob's. Some of them may very well have been given more than they can handle, and it has nothing to do with God.

Do you want me to cheer you on, I ask, or be frank and say, yeah, your life sucks hugely right now, and no, we know nothing about what your future holds. It's scary as hell, depressing as all get out, and yeah, what's the point of all of it? The truth is, both are true. . . I simply don't know what to do, what to say, at times. . . I agree, it's not miraculous that you can now get up to the walker by yourself. It's not miraculous that you can walk 160 feet with the aid of a PT right now. The miracle would have been if none of this shit had ever happened in the first place. You didn't need a "wake up call," you didn't need several lifetimes' worth of shit dumped on you in a year's span, you shouldn't have to be the sacrificial lamb for everyone else in the world to "learn a life lesson" from—hell, I could list about ten people off the top of my head who could use a "life lesson" dumped on them, myself included in that list . . . It's not fair, it's not right, it's the worst thing I could ever possibly have witnessed in my lifetime, to see one person suffer as much as you have. . . but I still am in awesome wonder at the progress you've made, in the weeks, months, in the year, I am still astounded at your determination, your fierce will, your intense fighting spirit to get through this. . . I see it . . . I truly, honestly do.

I also get his anger, the frustrations, the complete and utter annoyance with people who cheer him on, me included, who say, "Yeah! Bob! You're doing great! You look stronger today! I can see it!" It's the same anger, annoyance, frustrations I feel when I talk to someone who asks me about Bob and says, "I read the blog and am so happy to hear he's making such a great recovery!" No wait, is that really what I said? Let me be a little more honest, a little more vivid about what's going on . . . I understand what they're saying, it's what I say to Bob, to be hopeful, positive, encouraging. And I appreciate it, am grateful for the kind words, in my heart, I know what they mean, because they mean it fully, truly, with all their heart. As I do. It's the same thing I mean when I tell Bob I'm astounded at his progress. The anger, if that's even the right word, I feel is because no one will ever know the horrors I've witnessed Bob suffer and therefore no one has the right to say everything will be alright, because no one knows. Period.

The anger Bob feels is that no one can get inside his body and truly understand what he has gone through and continues to face. I get it, it's all part of the journey, but it's a tough stretch . . . It ain't pretty, it ain't great, it ain't a happy time, it ain't easy and the honest truth is none of us will ever know, in our lifetime, what it's like to have to work so hard, physically, mentally, emotionally, spiritually, to regain our lives back, after having it ripped apart, for no reason, with no explanation other than just because. And to be clear, it's not all anger. The anger is just a part of the big complicated journey. A necessary part . . .

Bob was feeling especially down a few days ago, talked about missing the dogs a lot; it's been two months since he's seen the pups. I got the bright idea that I could bring the dogs to him—y'know, just load 'em in the car, haul 'em on down to the hospital. Penny and Jim could wheel Bob out in his wheelchair, to the park across the street from the hospital where the pups and I would be waiting. . . it'd be a big happy furry reunion, Bob and his doggies. Easy peasy, right? Well one dog is 13 years old and arthritic, can barely get up off the floor these days, the other is the poster-pup for ADHD and vomits every time he gets in the car . . .

Undaunted, I loaded up the car with doggie blankets, water, leashes and all this morning. Both dogs knew something was up—I let Gaia outside, she walked right over to the car, like she used to when we'd be getting ready to go camping. She still recognized the signs, even though it's been a few years since we've gone anywhere with her. But, the problem is, over the past year, her age has really caught up with her, and her back legs have become weak and arthritic. It's been a slow progression, but really has become evident this past year. She has a difficult time getting up from lying on the floor (mainly hardwood and tile), and now and then, her hind legs will give out on a walk. She recovers and can continue walking, but it's evident our 13 year old furball is getting old . . . we have a doggie ramp that we've been using the past few years to get her in and out of the car, as she's no longer able to leap into the back of either vehicle.

Today, she couldn't even use the ramp, but not for lack of trying . . .ol' girlie gave it her all, but after several attempts, she finally backed down off the ramp and her back legs collapsed underneath her, unable to get back up. I struggled to lift her backside so she could get her legs up underneath her again, to get her out of the driveway and back onto my hosta bed, where she likes to lie (yes, my hosta bed). We had to give up. I sat down next to her and started crying as I called Bob to tell him that my grand idea just wasn't going to happen today . . . maybe today was just a bad day for our big girl . . . I know Bob was sad about it, though he tried hard not to let it show in his voice, sad about Gaia not doing well, more than anything. I'm sure, he's wishing he could be home with his beloved furry "firstborn" and crazy "third born" now more than ever.

Anyhow, long days, painstakingly slow progress for Bob, but progress, nonetheless. It's how it has to be. Like it or not. Like Penny keeps saying: Everything is scary and hard the first time you do it, Bob. Like stealing, she said. First time is scary, until you do it a few times, then it's no big deal! Ummmm, Penny? Are you trying to tell us something . . .

Pain meds are being weaned, appetite is slowly, steadily improving, hair is getting really long. Dude needs a haircut in the worst way. . . might need to bring the shears in and at the very least, trim around his ears, clean him up a bit. . . very tired right now, more later. xxoo

Lovely fall day . . .

These days—these weeks—at Bethesda are going to be roller coaster kind of days, ups and downs, over and over. . . past few days were tough for Bob, mentally and physically. So many new things to adjust to in the new setting, new routines, new ways of doing things, exhausting, endless interviews, exams, evaluations, assessments . . . then the wound vac, which worked just fine the day it was inserted (installed? applied? not sure of the correct terminology here . . . ), but yesterday, was fraught with technical difficulties. . .

Yesterday was the toughest so far, more so mentally than physically, but tough, regardless. Had some technical difficulties with the wound vac, as I'd mentioned; kept malfunctioning, setting off alarms and flashing scary messages like, "Leak Alarm!" across the screen of the pump, which only added to Bob's anxiety about the whole thing. His nurses kept assuring him it was simply a faulty machine and had nothing to do with the wound itself, but when the machine was swapped for another, and still had problems, we really started to wonder. It's most likely the location of Bob's wound that's causing the problems. The curves of his back and spine, as well as the waistband of his sweats being so close to the drainage tube that runs from the dressing to the pump, are making it difficult for the vac to get a good seal. Eventually, his nurses found a way to keep the adhesive dressing in place and the vac started working again, without interruption.

I also think Bob was pretty wiped out from the previous days' PT/OT sessions, and the constant

flow of people in and out of his room interviewing, assessing, examining him all day long, and the fact that he hasn't been sleeping well at night . . . on Friday, he told his nurses that Friday is his Crabby Day. Yesterday (Saturday), he said that he was extending his Crabby Day to Saturdays . . . his nurses teased him, "Well, if that's all you got, Bob, we've got it pretty good!" or, "Bob, if all of our patients' Crabby Days were as "bad" as yours, our jobs would be a piece of cake!" I told him he could have Crabby Days seven days a week, if this is as bad as it gets . . . he's earned 'em, for sure . . .

Later, he said, "Jen, I didn't tell you that I cried all morning, before you got here. . . and it about the dumbest things, things I shouldn't even be crying about," he said. Like what? "Like how mad I am about everything right now . . . so mad and so jealous, that everyone else can go about their days, go where they want, do what they want . . . and here I sit, wearing a fucking diaper, in a wheelchair, not able to walk, not knowing if I'll ever be able to walk well enough to do the things I used to do . . . and then getting mad at myself for getting mad about such stupid, petty things, but I couldn't help it. I just couldn't stop crying . . ."

I sat in silence, listening to him and at the same time, thinking about the psychologist who had stopped by on Friday. She asked Bob if he ever felt the need to talk to someone, just to get some things out, to have someone just listen while he vented a bit. He shrugged and said, "What's there to say? I could spend ten minutes bitching about how I feel, and then after that, I'd just be repeating myself, rehashing the same things over and over. How's that going to help me?"

I couldn't help thinking, as Bob was telling me about his morning, that he has a helluva lot more than ten minutes' worth of things to say about all this. All I could do was reassure him that he's entitled to being mad, sad, crabby . . . His life has sucked, big-time, for the past year and it's okay to start saying something about it. His nurses can take it, I can take it, his mom and dad get it . . . we won't take it personally . . . I didn't want to leave him yesterday, but I could tell he was really tired, so I stayed long enough to help him get his dinner, then back into bed. When I tried calling him to say goodnight, he didn't answer his phone.

Today, is another story. I called to check in, see how his night went. Bob answered his

phone (something he hasn't often done lately) and his voice sounded so strong, so much more determined than it did yesterday. He told me to take my time coming in as he was just getting up and ready for his morning meds, with breakfast soon to follow. When I got to the hospital, he was sitting up in his wheelchair, watching TV. I asked his nurse if it would be okay to take a little spin outside, if Bob was up for it. She agreed it would be great to get out for some fresh air before lunch. We unhooked his IVs and went out across the street to the little sculpture garden/park, which is part of Bethesda's grounds. I had to take pictures of all the sculptures we passed, then took a picture of Bob, with the capitol building behind him, quintessential St. Paul scene, like a couple of dorky tourists . . .

When we got back, lunch was waiting for him. Ate his whole egg salad sandwich (sans crust), some chips and fruit. After lunch, we rolled out to one of the sitting areas, and played a cut-throat game of Scrabble. It was truly neck 'n' neck, going back and forth; I was ahead by just a few points 236 to 224, sumthin' like that, when we both realized that the board was dang near full of tiles, yet we still had a boatload of unused letters in the bag . . . Bob looked at the little chart on the game board, and said, "Okay, I think we're playing with at least a few extra tiles here—there should be 8 O's but there are already 10 on the board, and I have a few more sitting on my rack . . ." I did notice another Scrabble board sitting on the shelf where I'd found this one, now that he mentioned it; guess the two games somehow co-mingled and had baby tiles . . . we finally end the game in a truce and a promise of a rematch, and headed back to his room. It was mid afternoon when Bob looked at the clock and said, "Do you realize I've been up and going since 8 this morning? Without a nap, without having to lie down because I felt dizzy?" And the vac seemed to be working just fine, too, we noted.

Later, my sister, Jill and her daughter, Amelia, stopped by for a visit, bearing Halloween treats for Bob, as well as a bag of movies for him to watch. Jill is ginormously preggers right now—"technically" about six weeks left of her pregnancy, but just found out her babe is already about 7 pounds, 6 oz. already (no gestational diabetes or anything, just a honkin' huge baby ready to bust out of her normally petite body). Bob said, "Oh, Jill, we have a present for you—Jen, get them out of the closet." I started laughing, remembering a conversation we'd had earlier. I opened the closet and pulled out one of Bob's diapers (though we prefer to call them loin cloths). "We figured you could use a few of these on hand for when the baby comes," Bob told her. I thought Jill might go into early labor, laughing so hard . . .

Bob finally hit his brick wall after that and asked to help get into bed to lie down for a while. That is an ordeal in itself, as he has a gigantic inflatable bed, which helps to redistribute the pressure under his wound site (as well as all parts of his body), but it's too high off the ground when fully inflated, to get on and off. It has to be completely deflated before Bob can get out, and when he wants to get back in, we get him onto the deflated mattress, he lies down on the hard surface, then I turn the valve to reinflate it, elevating him higher and higher as it fills with air. He fell asleep almost immediately; Jill and Miss A said their goodbyes, with promises of stopping by again sometime soon.

This plaque is on the wall just inside the main entrance to Bethesda. The picture on it of a sculpture in the front garden. In case you can't read this, it says: There was in Jerusalem a pool called Bethesda. An Angel of the Lord went down at certain seasons into the pool and troubled the waters. Whoever stepped in first was healed of whatever disease he had. John 5:4. Kind of a lofty assumption to think Bob will be "healed of whatever disease he had," but there are signs of definite improvement, even in the short time he's been here . . . had a feeling of comfort and peace, reading the plaque . . .

So, today, the roller coaster went back up. We went for a walk. Played Scrabble. Bob had a good appetite, ate more than he has in a very long time at each meal. Had visitors, and a ton of movies to watch (he had me pop in a DVD of Kolchak: Night Stalker before I left), pain is well-controlled. I noticed that when he gets up to his walker from a chair, he does it almost effortlessly, almost as if he didn't need the walker. And when he sits up in bed, he's pushing himself to an upright position (I or a nurse still has to help support his legs) quicker, with less effort every day. He sat upright for most of the day—something he hasn't been able to do in nearly a year, if you recall, peeps. The simple act of sitting . . . Before I left tonight, Bob said, as he often does, "Thank you, for everything you do for me. I can't tell you that enough . . ." I said, "Thank you for the good day we had together today."

"Was it a good day?" he looked at me, not questioning my statement, but truly asking, as though he didn't know. It's been so long since he's had a truly good day, I don't think he even recognizes them. Or, maybe it's just that my definition of a good day and his definition are still light years apart . . . a few more like today under his belt, and he'll come to know them again . . .

Out with the old, in with the new . . .

("Old" view for the past 7 weeks at the U . . . sorry about the blinds—they were "built into" the window panes and were somewhat defective—couldn't open them any more than that . . . .)

Takes a lot out of a guy and gal, to get set up in new digs. Y'know the drill: make yourself "at home," get all your stuff put away, hang up clothes and pictures, meet the neighbors, get assessed and evaluated by every freakin' medical professional in the joint: MD, NP, RN, PT, OT, RT, LSW, PsyD . . . WTF, LOL, JMJ . . . a two-day extravaganza of interviews, evaluations, poking, prodding, peeking, literally and figuratively, into Bob's extensive medical history. Despite this overly intensive, overwhelmingly invasive past two days, I must admit, for the first time in a very long time (ever?), I feel cautiously optimistic about Bob's care and the prospect of moving forward. Jury's still out, from Bob's perspective, understandably . . .

We got to Bethesda on Wednesday afternoon; the day was basically spent getting settled into Bob's new room (all are private), becoming acquainted with the facility, making the information transfer from the U—meds, health history, current condition, issues . . . .Things were so new, a little freaky (different ways of doing things), major NKOTB-syndrome (that would be "new kid on the block," for those unhip to the lingo . . . as I typed that, the 90's pretty boy-band, NKOTB popped into my head and now can't get rid of the image, hence, the link. Now you can all share my misery . . . Had dinner, took Bob on a wheelchair tour of the joint, before they hooked him up to the IV meds for the night.

Thursday, Penny and Jim came up. They went to the house first, to hang with the doggies because I'd left early again, to meet Bob's new primary doctor, who's not only an Internal Medicine doctor but also happens to be Chief of Staff of Bethesda (they must have gotten our "do you know who we are??" memo, for that VIP assignment. Or not.). He is my new stoic BFF. Personality of an iceberg, but I love him, nonetheless. Straight shooter, insightful, perceptive, tells it like it is. In the 20 minutes he spent with us, assessing Bob's history, he pinpointed no less than five issues that he wants to address immediately, if not sooner. As Bob zonked out during the conversation, Doc Iceberg noted, "Too many narcotics. He might have needed them prior to his surgery, but clearly now, they're overkill. We want him to be comfortable, but our goal is to strip him of the narcotics, get him on pain meds that don't have the side effects he's dealing with now. The narcotics interfere with so many things: obviously, his mental altertness—" as if on cue, Bob's body jerked as the doctor spoke, "—and that. Jerks like that while sleeping is an obvious sign of too much narcotics . . . then there's the ilius in his bowels . . .yes, surgery has that effect, but definitely the narcotics do, as well . . ."

He addressed the adrenal issue Bob's had. "You're now in another very stressful situation, Bob. Your body is unable to produce a 'normal' amount of steroid as it is because of the adrenal insufficiency issue, much less enough to compensate for this recent stressor. We'll treat you with a temporary increase in steroids, which should help appetite and overall feeling well." Talked about the wound care and that his adept staff would be in later to assess that; noted Bob's hypotension, ordered more IV fluids, talked about how his overall condition may be contributing to it, and once other issues (lower narcotics, increase fluids, steroids) have been resolved, the bp may resolve itself. . .

Doc Iceberg went on to talk about depression. He said the vast majority of the patients who wind up in Bethesda are depressed, whether they admit it or not. "Fact is, my patients have been through hell, like nothing most anyone can comprehend, many are not even close to being out of hell yet. They've had catastrophic illnesses, like you Bob, or experienced a devastating accident; they've been shot, stabbed, fallen off a ladder and broken their skull and spine, crushed in a car accident. . . lives that have been dramatically, devastatingly changed forever, and that's not something someone just 'gets over.' It's something very few of us will ever understand, will ever go through in life. Therefore, if one of my patients tells me they're not depressed, I know they're lying, or at least not yet facing that truth, and everyone reacts to these life-altering events differently. You have the right to decline any treatment I offer in this regard, but it's an issue I won't let up on, because it is so debilitating in itself and interferes with everything, from your appetite, to participating in therapies, to overall healing and progress . . . "

Bob continued to snooze; I sat with my mouth agape. Doc I. continued as though Bob were completely coherent: "As a two-time cancer- and multiple heart attack- and countless-other-complications-survivor, Bob, you've spent the past year doing everything you could, have spent every last resource you had to simply survive, to get through each minute of every day. That takes a huge amount of energy. Most people who go through devastating events like this don't experience the depression until the threat is over, until they're stable. Until things are starting to 'look up.' Then, it all hits you like a ton of bricks. Your defenses are down, you have time to think, you have time to reflect, to come face to face with the awful things that have happened to you in this long journey. It's too much for anyone to bear on their own . . . I'm just telling you that you don't have to. We have tools to help you, should you decide you want to use them . . ."

Later, a wound care nurse came in to assess Bob's incision site. First "issue" is that their dressing change took all of 10 minutes, not a full hour, as it had been taking at the U. Bob freaked, thinking things weren't being done right. At the risk of sounding like I was telling them how to do their job, I told the nurses at Bethesda how it was done at the U, all the steps, how hard it was for Bob, that it took nearly an hour . . . they listened respectfully, then told me that what was done to care for Bob's incision site was great, that the nurses at the U did a beautiful job at keeping the site clean, moist and healthy, a perfect setting for healing, but in the next breath said, "But why hasn't a wound vac been used yet?! He's a perfect candidate for a wound vac—his dressing changes are so painful now, have to be done daily if not more, because of the drainage—everything gets so wet and uncomfortable; the wound looks beautiful, so clean and is healing so well already, that a vac would make things so much easier for everyone." (I'm still coming to terms with the words "wound" and "beautiful" being used in a sentence together, as I'm still using "wound" and "fucking horrific" together in a sentence—I gotta get over that . . .) Bob and I both freaked at the idea of a wound vac. Doc Writes-On-Her-Pants talked about one, but it seemed so far out in The Future; colorectal docs said the wound is too close to Bob's bowels, could cause damage . . . Bob had visions of his guts being sucked out by an Electrolux-like vac . . .

The wound care nurse (who gets many of Doc WOHP's patients, btw) talked to us at length about all the patients that they care for on this unit. Most of them are wound care patients, many have vacs and all the nurses are very well-trained with it. A vac isn't for everyone or every situation, but the benefits outweigh the risks in Bob's case, as his wound is clean and healthy (e.g. "beautiful"), he has issues that are interfering with the healing now (nutrition status, previous radiation, huge gap in pelvis); the vac facilitates new tissue growth, and gently pulls the wound closed, which helps to speed the process of healing. The dressing changes will only be 2-3 times a week, instead of daily, so it's less discomfort for Bob. The vac dressing totally seals off the wound, so there are no drainage issues; the bowels can be protected with light dressings . . . overall, it can help to increase healing time . . . she left us a video to watch, about the treatment, and philosophy behind it. . . .

Today (Friday), the wound care nurse came back to change Bob's dressing. He said to her, "Against my better judgment, let's do it. Let's just do the wound vac. It sounds terrible, I'm freaked out about the whole idea of it, but I just want to do whatever I can to get this show on the road . . ."

His wound nurse is so freakin' funny, so compassionate, so steeped in experience and knowledge of wound care, in spite of myself, I was laughing along with her. She called Bob's assigned nurse into his room to take advantage of his weak spell, and to get moving with the process before he changed his mind. After talking to her, I knew Bob would be in good hands. She picked up on Bob's anxiety and explained everything so well, in such gentle terms, but also picked up on Bob's sarcastic sense of humor and gave him shit like I've not seen anyone give him shit in a long time. Damn, she's good.

Finally. I feel like we're in a place where people understand. Where platitudes and cliches ain't part of the local vernacular, where people understand and respect the magnitude, the horrors, the long journeys, the fact that things just aren't suddenly "better" once the surgery is over, that sometimes, the very real fact is that some people just don't make it, or make it fully to what they were before. Sometimes far from it. Not saying Bob's part of that scenario, but saying that people sometimes just don't get there, despite the praying, the believing, the hoping, wishing, crying, bartering, begging . . . that's how life happens, peeps. Just how it sometimes happens.

A place where medical professionals take the whole picture into account, where there's one main doctor in charge, with a "whole"-istic approach. Where the medical professionals truly understand where patients with devastating illnesses and injuries are coming from, physically, medically, mentally, emotionally, spiritually . . . and can offer effective treatments. I'm not saying that the U didn't care for Bob well or that they didn't "understand." Each specialty has done a phenomenal job with their respective area of expertise. However, the U, like most hospitals, is equipped to deal with, in my opinion, short term acute situations, in dealing with whatever critical issue is going on at the moment. Even though they get many complex patients, the care is focused on what's going wrong right now. And, I truly believe Bob has been an anomaly for even the U, with the layers upon layers of issues he has had piled upon him. In such a situation, communication so easily breaks down, layer after layer, the more complicated a patient is and the more people who get involved . . .

Bethesda deals with patients like Bob every day. Patients with multiple, long-term health

issues that will take a very long time to rehab. It's a "whole"-istic approach, taking mind, body, spirit into consideration. The full meal deal. It's been such a busy two days, and I know I've missed some things here; maybe tomorrow, I'll add/delete/edit details once I', awake, have had a few cups of coffee and re-read the innane drivel . . . (new view out of Bob's room at Bethesda . . .)

It's been almost exactly a year to date, mid October of last year, when Bob's journey through hell began. Have been thinking about that all week. Some days, I'm astounded it's been that long . . . others, it seems like this is all we've ever known.

New digs, again . . .

Heard the most wonderful sound today, the sound of a real, hearty laugh from Bob, for the first time in so long, I can't even remember when I last heard that laugh of his, months . . . I was sitting next to his bed, reading, and thought he had fallen asleep watching TV when I heard it. It startled me because it sounded so foreign, but made me laugh, too, even though I had no idea what prompted it. An all-out, real-live laugh, followed by, "Hey you dang woodchucks! Quit chuckin' my wood!" in his best creepy Deliverance-hillbilly voice. I looked up to see the Geico commercial where a pair of wood chucks are, well, chucking wood into a pond. I looked at Bob, he's got a huge grin on his face . . .I think I had a stupid grin on my face for the rest of the day, every time I thought of the commercial and Bob laughing out loud at it. . .

Bob's being moved to Bethesda Hospital tomorrow, a long term acute care hospital. It's not part of the U of M system, but they get many referrals from the U, as it's an "in between" care facility—a step between the short term acute care of a "regular" hospital and the TCU or acute rehab. I should really draw a flowchart to explain the levels of care, but truthfully I still don't know the extent of all that's available, as far as care facility options are, so I won't, for fear of confusing all of us even more. He's qualified for this level of care, we're told, as he's stable, has no critical issues going on right now, and is therefore not sick enough to be in a "regular" hospital any longer. But, he still requires more extensive hospital-type care (the extensive wound care, the necessary IV stuff right now) than what acute rehab or even TCU can do. This is from the hospital's website:

"At Bethesda Hospital, we understand the staggering effects of a severe injury or illness, and we specialize in providing innovative approaches to treatment and recovery.

Our staff members have a tradition of combining expert medical care and innovative rehabilitation techniques that focus on abilities rather than disabilities. We offer programs in Respiratory Care, Complex Medical Care and Brain Injury Services."

Bethesda offers extensive rehab services (PT, OT, other therapies, psychology services, support groups, etc.), but in a more comprehensive, hospital-like setting. They're equipped and specifically trained to deal with patients who are facing a long recovery from illness or injuries, with additional complications such as wound care, necessary IV medications, respiratory care . . . CTs, MRIs and other services are available, they staff every -ologist under the sun (well, except for oncologists, but if needed, Bob can be transported to the U for any appointments necessary with his primary team there), as well as dieticians, spiritual counseling, and other services for specific conditions like brain injuries and severe respiratory cases. The average stay at this facility is about 30 days.

So again, my question was, "Where was this option seven weeks ago, after Bob's surgery?" Well, I'm told, he wouldn't have qualified for the facility back then because he didn't have a wound that needed daily cares, didn't have necessary IV nutrition/meds, wasn't "critical" enough back then. Oh, really? So, it didn't count that he was "just" recovering from an extensive surgery that resulted in removing a huge chunk of his pelvis, with visible complications right from the start, on top of the effects of a year-long battle with cancer that wasted his body to a frail old-man version of himself, along with two heart attacks and endless complications resulting from the disease, the heart attacks, the treatments? That's not sick enough? But now, just because he has a few bags of IV solutions and an open wound (that we've been told, many times over that it's really not as bad as some wounds are). . . man, if someone out there could explain this back-assward concept in a way that it makes sense, but something tells me that ain't possible . . . Preventive medicine is not a goal in our present healthcare system, I am telling you. My Krazy Konspiracy Theorie is sounding less and less Krazy, and more and more scary-real. . .

I stopped by Bethesda on my way to the hospital this morning, got the grand tour. It's a beautiful facility, private rooms, felt almost like a hotel than a hospital. It's right behind our state capitol building, and I didn't expect the surroundings to be much to speak of, but was surprised at how beautiful the grounds are, and the surrounding neighborhood is. The therapy room is the size of a workout club . . . doesn't have the slasher-movie "sanitarium" feel that Fairview had . . . I had a good feeling, leaving Bethesda, like finally, this is the place that Bob should be in. Not at all like how I felt when he was being shipped over the river to Fairview's acute rehab. . .

While he's there, I think I'm going to arrange a tour of the capitol. I've never been in it. Not even in grade school, when youngsters are supposed to get the class trip that coincides with a history lesson. No, I was part of the one and only 6th grade class in the history of Mt. Lake Elementary that had that privilege ripped from us, thanks to the antics of a few unruly classmates . . . a few bad seeds, and we all had to suffer. . .when I call to schedule my tour, I'm going to make sure I get included in with a 6th grade class tour, to get the full effect of what I'd missed back in 1980.

Wow, do I digress . . . Bob seems to be okay with the idea of going to Bethesda. He said, "For once, it sounds like it might be a real step forward, to get me closer to home . . ." I really do feel good about it, too. I'm almost scared to type those words. . .

random thoughts on the day. . .

Spent the better part of the day thinking today was Saturday . . . not that it matters what day it is in our world, just thought it was funny that all day, it was Saturday in my mind. Checked the mail, surprised there wasn't even so much as political garbage, was going to swing by the bank but didn't have time . . .

Today is another day that was microscopically better than the day before for Bob. Or, perhaps I shouldn't say "better than the day before," as that's really not quite accurate; rather, it was another day that showed improvement from the dark days that have hung over us for far too long. Not necessarily better than yesterday, still worse than pre-surgery (again, if that's possible), but better, generally speaking. We got Bob up and out of his room for the first time since he came back to the U a week and a half ago. He and I had lunch in the sunroom on his floor, DQ chicken strips, chocolate malt . . .

I think I said it yesterday, how much I'm looking forward to Bob's return home, to resume eating better, among so many other reasons. But right now, it's a mission to do what we can to jump-start his appetite, get something in him that isn't liquid IV nutrition, and that sounds appealing to him. Unfortunately for me, green smoothies or fresh juices aren't making the cut these days . . . hence, the DQ run. But, the more he eats on his own, the closer he'll be to getting off the TPN, and my hopes that are this junk food period is just temporary, to coax his appetite till his taste for more, real foods returns . . . Today, he ate something for breakfast, lunch and dinner—a first since his surgery (the big surgery, over six weeks ago). Not much for each meal, but it was something.

We got Bob up several times today, either to a chair, his wheelchair, to the bathroom, or simply to the edge of the bed to take his meds. The drop in blood pressure is dissipating as the days go by. His dressing change went without a hitch again today; hasn't had to take much breakthrough pain meds today. . .

I went home midday, to let the dogs out, rake the front yard, finish laundry. Great weather to hang a few loads on the line—I'll take advantage of this weather for that, as long as I can. Love my clothesline . . .Vacuumed the house, sucked up a pair of underwear in the process (ummm, yeah, I s'pose I should explain that one . . . see, the side entry to the house is also our laundry/mud room, and I was vacuuming between the washer and dryer, trying to capture stray leaves that get dragged in this time of year. The moment I realized a pair of skivvies was lodged between the dryer and wall was the same moment the vacuum sucked 'em up and immediately sent out a high-pitched wail, letting me know they hadn't made it all the way through to the dust canister. Had to retrieve the toolbox, take the vacuum partially apart, remove the hose and employ the use of a broom handle to reach the undies . . .), eventually freed the errant panties, finished vacuuming, fed the dogs and back on the road to the U to say "goodnite" to Bob.

I pass a corner out where we live, to and from the U, every day. A wide open lot that could be a lovely natural landscape, a prairie-like stretch, save for the fact that during election year, it gets so clogged with political signs you don't see any one name of any candidate for all the mess. Kind of defeats the purpose, I think . . . My secret fantasy is to dress in all black some night, sneak down to that eyesore of a corner and yank out every last one of those offensive signs, restoring the corner to its natural beauty. . . 'cept that I know the very next day, all the hard work would be for naught, as they'd all be back . . .

On my way home tonight, I thought of the day, sometime in the future, when I'll have Bob in the car with me, bringing him home, making this journey from the U, for the last time. . .