We interrupt this blog for the following announcement . . .

We, the Robert Andrzejek Benefit Committee (for lack of a better name . . . we're open to suggestions—the We Love Bob and Jen Committee might be a good one . . .) have hijacked Jen's blog (actually, it involved wrestling it away from her. You know, Jen, she's a little feisty) for a moment to bring you news of a benefit event to be held in Bob's honor.

The RABC is a group of friends and family organizing the event for Bob, which is still in the planning stages. We have a site and a date, and even a separate blog dedicated to the event, www.buboman.blogspot.com. Here, you will be able to check out all the latest updates on the event. We've also added a permanent link in the upper right hand corner of this blog (the box with the cute baby owls), for you to click on at any time, which will bring you right to the benefit blog.

The benefit blog will be updated as planning progresses. Thus far, we have the date: February 13, 2011 from 1 to 7 p.m., and the location: Throwbacks Grille and Bar in Woodbury. We're planning live music, a silent auction and who knows what else!

So, save the date, and stay tuned! We now return you to your originally scheduled blog . . .

A beautiful, cold, November weekend . . .

Saturday, November 27, 2010

Happy Thanksgiving everyone, a few days late! We had a really nice turkey dinner at Bethesda, despite its source being the hospital kitchen. They must pull out all stops for this one meal—we were treated to turkey and all the trimmin's—mashed 'taters, sweet 'taters, dressing, cranberries, at least three kinds of pie . . .

Penny and Jim came up Thursday morning, stayed till late Friday afternoon. They were going to try to be here Wednesday, but southern MN was pelted with the freezing rain we were supposed to get, so they stayed put till traveling was safer. We, thankfully, didn't get the freezing stuff that threatened to coat the metro area with a thick glaze of ice. Just an inch or so of snow that started late Wednesday afternoon and ended sometime early Thursday morning.

Nuisance snow, I call it—not enough to justify firing up the snow blower, but enough to warrant shoveling, to keep it from turning into an icy under-layer if driven over. Which wouldn't necessarily be a bad thing in my world, if we had a short, flat driveway. But we don't. We have a long, U-shaped drive, with steep inclines on both ends, which turn into slick ramps when ice builds up on them, and I'd never get out of this joint if that happened. Which did end up happening, because I didn't get a chance to start shoveling until Friday morning, and by then, the thin layer of snow had been driven over several times, pressed into sleek tracks of ice.

So grateful to have Penny and Jim here, to help me shovel and chisel my way out, or I'd be stuck here till spring thaw. . . Jim helped shovel and break up the compacted snow while Penny stayed inside, doing some last-minute cleaning for a showing of the house on Friday . . . where would I be, without those two . . .

We got to Bethesda before noon on Thursday; Bob got a hall pass to leave his room and join us down in Bethesda's on-site cafe for the holiday meal. The cafe usually has a fairly decent offering of grub— for some reason, often a helluva lot better than what the patients are served, though they come from the same kitchen. Usually at least 2-3 main entrees and sides to choose from, along with various grill items and a fairly impressive salad bar and sandwich bar, and the patients always have the option to order meals from the cafe if the hospital menu isn't appealing.

On Thanksgiving, though, it was just turkey dinner (with a vegetarian lasagna option for non-meat eaters/non-turkey lovers). The four of us loaded our plates and brought them to a table in the dining room, where we ate in the cozy confines of the cafe. There were some staff members enjoying the meal, and a few other families, also celebrating the holiday with their own loved one/patient. One family, in particular, caught my attention; a big group, 10-12 people gathered around several cafeteria tables that had been pushed together to make one long one. Grandpa and grandma-types all the way down to kid-types. The guest of honor, the one toward whom everyone directed their attention, was a woman seated the head of the table. She was in a high-tech wheel-chair, wearing a protective helmet (could be for a number of reasons—perhaps she has severe seizures, maybe a serious fall-risk); she appeared to be paralyzed, at least to some degree . . . Her hands looked weak and atrophied, both were encased in some sort of brace, up to the forearm. The braces seemed to hold her hands straight, to prevent them from contracting, curling up toward her wrists. I could see that when she talked, it was a labored effort. . .

Another couple at this large gathering had two infant car carriers, each with a tiny baby inside. The babies were passed around to the guests and eventually brought to the head of the table, where the woman in the wheel chair sat. I saw her tip her head and smile at the babies, as they sat in their carriers in front of here, but she couldn't even so much as reach out to touch them, just smile.

A few PTs who were also in the cafe, came over to ooohhh and aaaaahhhh over the babies. I overheard the woman who was hauling one of the carriers, the one whom I'd assumed was the mom, reach over and rub the shoulder of the woman sitting in the wheelchair and say, "Mary here is their mom—they're twins, seven weeks old . . . "

Wow . . . I couldn't get my mind off that scene all day . . . still thinking about it . . . I've seen Mary before, in the PT room when Bob has had therapy; someone is usually with her, a family member, but I've never seen the babies before. All day long, I wondered what could have happened to Mary. Did she have a stroke while giving birth? Was it a terrible accident that severely injured her and sent her into early labor? Of course, I couldn't expect a staff member at the hospital to divulge such private info, as much as I wanted to know (though, if we had been at the U and had been a roommate of Mary's, we would've known her medical story inside and out, thanks to the parade of docs who exercise complete disregard of a patient's privacy, blabbing personal medical info, as though no one else were in the room . . .) Mary probably has yet to hold those sweet bundles of love in her arms . . . or maybe she has. Perhaps, in the privacy of her room, when she's lying in bed, someone brings the babies to her and lays them on her chest and lifts her arms for her, to encircle the tiny bodies. So Mary can feel the warmth of their skin and they can feel the beating of her heart, so each knows that they are of one another, that they belong to each other . . .

I send a pathetic little prayer upward and outward, toward Mary and her family, with the deepest hope that she makes a full recovery, so she will one day cradle those tiny babies in her arms . . . and am reminded, with glaring clarity, I, as so many people who know Bob, am at loss for words . . . I do the same, with endless patients I see at Bethesda—the young man (late teens? Maybe 20, at the oldest?) in the wheelchair, appears to be quadriplegic, with three very devoted sisters and parents, who are always by his side, in therapy, in the hallways . . . or the handsome young man who is in a body brace and a very complicated-looking wheelchair, with legs so thin and frail, always sporting a protective helmet, always seems to be sleeping when he comes down to therapy (once in a while I see his eyes open, but have yet to see evidence that he can speak). Or the man with two prothetic legs, trying to learn to walk again, or the woman with the short, spiky hair (is that how she wears it? Is it chemo-induced? was it cut for a surgery?), who looks around the room as she waits her turn for therapy, who sometimes makes sad eye contact with me, sometimes crying softly as her PT softly strokes her arm, gently coaxing her to please try to do the exercises he's asking her to perform . . . I am helpless, even neck-deep in our own shit, at a loss . . .

It's an emotional place, Bethesda. I'll never know the stories behind the broken bodies and souls and lives of those who share the the space Bob has called home for over a month. . . I met a woman in the elevator, on my way up to Bob's room yesterday. I've seen her several times. She's often standing outside a room down the hall from Bob's, gazing out the window. I say hi to her as I enter the elevator. Your home away from home, too, huh? I say. She gives a little laugh. "Yeah, my husband has been here for five weeks; was in the hospital for a month before this . . . " I respond with a weak, knowing smile. I could have said, We're going on seven weeks here; my husband's been in the hospital for three months . . . but I don't.

It's a funny phenomenon, I've noticed, in hospitals. Toss someone a little line and the stories come tumbling out, in a deluge . . . everyone's story is the worst story ever, in their world. And in their world, maybe in the whole wide world, it is true . . . stories of accidents, illness, horrible tragedies that no one could have predicted, planned for. . . to ask about it is like pricking a balloon and bursting the pent-up pressure, usually . . . but I don't respond like that. I can't. Because if I did, I don't know if I'd be able to stop. Besides, the elevator reaches our destination—third floor—quickly, and the doors open to let us out before I can begin. Saved by the bell. I smile, though not really smiling, knowing, as I feel like I'm the author of measuring life in increments of days in ICU or weeks in the hospital . . . But I don't offer much more. "Try to have a good day," she says, as she exits, and again, I know exactly what she means. You, too, I say, as we exit, toward the rooms where our husbands are waiting.

A few days ago, on Thanksgiving day, I believe, Bob told me he got chewed out by his nurse. What?? Why?!? I asked, alarmed. "Because I got up and went to the bathroom by myself. Twice." Shut the hell up! I burst out laughing. You did not! "Did too. I had to go, and didn't want to wait around for someone to show up and help me." Well, even though your nurse was probably mortified, she was also probably secretly ecstatic at your defiance, I say. It's a sign of of progress! "Whatever." he said. "I just had to go. She told me to promise never do that again, I told her I couldn't do that . . ."

The other day, Bob walked up a whole flight of stairs, 10 steps, and came back down again. His PT was by his side, but was just spotting him, not doing any of the work. We both looked at Bob in awe when he had finished. "I think you're holding out on us, Bob," she said. "I'm gonna have to come up with harder things for you to do. Even with your big ol' leg, you're surprising me how strong and mobile you're getting. . ." He also practiced getting in and out of a car (made it look like a piece of cake) . . .one of these days, we'll practice getting into the Jeep, as it's higher than the car that's used in PT. . .

Doc Writes-On-Her-Pants (the plastic surgeon from the U) paid a visit to Bob yesterday. She assessed the wound site, and has started a game plan for what to do next, and has arranged for an appointment with the colorectal surgeon who was part of his main surgery team, and will be contacting the orthopedic team, as well. All the components that are entwined with what's going on with the wound and what to do next. Overall, Doc WOHP was thoroughly impressed with how much it's filled in and closed in, in the six weeks Bob's been at Bethesda. She said it looks really good, but now she needs to come up with a plan for the final stages of healing. There is some issue with the exposed bowels in the surgery site that needs to be addressed; hence the re-involvement of the colorectal team.

We have so many followup appointments in the coming weeks, it makes my head spin, but also makes me feel that things are falling into place, that Bob is that much closer to home, but that also that a plan is being mapped out, for continued progress, as we make those plans to get him home.

random words of thanksgiving . . . in a round-about way . . .

Yeah, I know. After that last post, most of you are probably now scared shitless to communicate in any way, shape or form with Bob. Terrified of the Redhead Tasmanian Devil snarling at his bedside. . . Sorry about that. . . that wasn't my intention at all. . . I know we all say things without thinking (I happen to be reigning Queen of Diarrhea Mouth), and I know in light of all Bob's gone through this past year, most are completely at a loss for words, for anything, to say, and I do know that most things that anyone dares to say are said with all the best intentions, with love, concern, support and encouragement . . . in my heart, I know that, I really do. . .

This past week has been a tough one, with the latest setback, and just kinda got to both of us. Most of what I vented about in the last post was out of frustration that even I, Bob's wife, who has been by his side and witnessed the worst of the worst, who knows intimately the the jerks and spins of the Krazy Karnival ride we can't seem to get off . . . it's disheartening for me, knowing even I can't say the right thing, to keep Bob's spirits up, to keep him fighting, pushing forward . . . keep wondering when this will end, or at least ease up somewhat, in the hopes that that will help ease Bob's load . . .wondering when will the steps forward finally outnumber the setbacks? And words of encouragement sometimes feel like gnats buzzing around my head, irritating and infuriating, rather than the well-meaning gestures they were meant to be. . . it's the hardest thing in the world, peeps, to try to convey to you all, the depth and scope of all Bob's been through, in spite of all I've witnessed, in spite of my best efforts, often fail miserably in my attempts, and that typical, standard words of encouragement often leave me shaking my head, biting my tongue, and retreating deeper into our protected, sheltered little world, which is easier than trying to explain . . .

So anyhoo, Bob's doc at Bethesda is pretty amazing and has several orders out for specialists to come see Bob during his time here. Urology. Oncology. Neurology. Plastic surgeon (for the wound—we're actually having Doc Writes-On-Her-Pants scheduled to come see Bob! She remembers him, sounds like she still has a deep interest in his case. yea!), cardiology, Physical Medicine and Rehab, orthopedics . . . he's definitely a take-charge kind of guy, confident, thorough, and covers all bases. No wonder he's chief of staff at the joint here. I feel really good about all the pieces he's trying to put into place and feel we'll have a real solid plan in place before Bob is discharged. I'm grateful for proactive thinking . . .

A quick aside about this doc: the other day, as I'm giving my teary recount of all Bob's been through this past year, Bob's doc interrupts my soliloquy and asks, point-blank: "And what are you doing to take care of yourself?" I stop, stare at him. This isn't the typical patronizing, "But what about you, Jen? Are you taking care of yourself?" that I get over and over from other doctors, an empty question with an equally empty answer: nothing. This was a genuine, chastising, "What the hell are you doing to take care of yourself?" to which I replied, "Well, as much as I can, given the circumstances," to which he replied, "Totally off the subject of Bob for a minute—sorry Bob—but we're kicking around the idea of opening a clinic on-site at Bethesda, for caretakers and family members of patients here. I see it all too often, loved ones running themselves into the ground, caring for their husband, child, whatever. Just wondering if you have a primary clinic you go to, or if you'd be interested in such a service; we're doing an informal survey with family members, to see if it would be worthwhile to offer. In the meantime, we have clinics very close to Bethesda, if you need to get in to see someone for your own health concerns. I see it all the time. . . " I think back to this past spring, when I had gotten so sick but refused to go to the doc because it wasn't convenient, and it was convinced it was "just allergies" (ended up being bronchitis and whooping cough . . . dear God, I shudder, thinking of the countless times I'd been in the oncology wing at the U, damn near coughing up a lung in the hallways. . .) Anyhow, I was astounded. This was the first time any health care professional that Bob's seen has taken a sincere, concrete interest in me, the caretaker. And offered something concrete to me, as well. Thankful for outreach . . .

Anyhoo, sidetracked once again . . . speaking of discharge (were we? Oh yeah, like 10 paragraphs ago . . .), with all the pieces falling into place, with the astounding progress Bob has made thus far, our mission, should we choose to accept it, is to have Bob home before Christmas. There was talk of sending him to a TCU or other acute rehab facility, but I've made up my mind that, as long as the critical medical issues are under control, I think it would be best for Bob to come home, to our house. At least try it. All the things they'd do for him in a TCU could be done at home—he could have PT at home, have a wound care nurse out a few times a week to change the wound vac dressing (if he even has it still, at that time. He actually hasn't had the vac in a good week or so, since he had the blood clot, as they don't want to irritate the wound site, which could lead to bleeding, which could lead to enormous amounts of blood loss, given all the blood thinners he's on currently).

Bob hasn't been home in three months, and prior to that, he spent more time in the hospital than at home, so I'm really pushing and working toward discharge to home, given that all the right pieces are in the right places, of course. And that we are all comfortable with the plan, not just me. Bob needs to be okay with it, his doctor needs to feel confident he'd be as safe and comfortable at home, with all the services he'd need readily available, as he would at a TCU. A solid game plan for the countless loose ends that we left the U with . . . I'm grateful for solid game plans . . .

And, just so that y'all don't think I just sit around and dwell on the negative that's colored our world this past year . . . clinging to the positive, no matter how little or how faint, is what gets us through each and every day, despite the shit-colored glasses we've been looking through for too long. So, in the spirit of Thanksgiving, here's a quick run down of the things I'm really grateful for: right now, Bob is down to taking almost no narcotics. When he was admitted to Bethesda six weeks ago, he was still on 20-25 mgs. methadone 3x/day (in other words, a shit-load, for those of you unfamiliar with methadone doses). He's down to 2.5 mgs. twice a day. He was taking high doses of Dilauded (another heavy-duty narcotic) as needed for breakthrough pain every two hours on top of the methedone. Since being at Bethesda, he's maybe taken Dilauded once or twice . . . He can sit on a chair, in his wheelchair, whatever, for extended periods of time. He can lie on his back in a bed, reclined, flat, on his side . . . he can walk over 200 feet with the aid of a walker, and a few rest breaks along the way. He can put on a pair of pj bottoms, get one sock on his good foot, close to being able to get a sock on the bum foot . . .

I think back to this time, last year, and remember all too well, that the simple act of sitting, for Bob, was impossible. Lying on his back was impossible. Standing for any length of time, walking any distance, absolutely impossible. And that was his life, for months, until his surgery in August. After Bob's surgery, we needed a Hoyer lift to get him out of bed, and he cried out in agony with the slightest of movement. By the time Bob entered Bethesda, he still needed at least two people to help him out of bed. Now, he can get up and to the edge of the bed with no help (the clot-swollen leg has hampered that somewhat, but surprisingly, he's still pretty damn mobile, big fat blood-engorged leg be damned). He can get to the bathroom by himself, with the aid of his walker . . . his appetite has returned—he's actually hungry and eats most everything at each meal (though the food at Bethesda is pretty bad, gotta admit. . . a few faves on the menu here and there, but overall, grotesquely unappetizing). We've been doing lots of takeout lately—Pizza Luce, local Asian stuff, the occasional Taco Bell or Chipotle. . . I brought a home-made chocolate shake in, for a treat, today. Tomorrow, another shake and maybe a jug of one of my fresh-made juices. . . slowly, we'll be introducing real, healthful, healthy foods back into his diet.

Even though he still feels light years behind what a "normal" life looks like, I tell Bob each and every day, many times over, how "in awe" I am of his progress, that every day blesses me with the opportunity to witness yet another surprise accomplishment, no matter how small. They all add up . . . I think a lot about our set-up at home and am pretty confident he could maneuver I am sooooo looking forward to having Bob home, to go grocery shopping again, start cooking for two again, rebuilding our lives together . . .

Looks like Thanksgiving is going to be at Bethesda, but according to many of Bob's therapists and nurses, they put out a pretty good spread on turkey day; employees eat free (and they still do a full day of therapy, in spite of the hoqliday), and is available for family members visiting patients. Penny and Jim should be up here; might have a few of my own family members show up, depending on who's around. . .

Almost 11 p.m. (an early night for me), so I think I'll be wrapping this up. Oh, btw, just wanted to give a quick "shout out" to whomever sent the package with the collection of movies (all comedies! yea!) and gift card! What a great surprise, to find that in the mailbox after a tough day at "the office," but I feel bad as I don't know of the sender's ID! I "traced" the address to Surdyk's but there was no card or name or any other identifying info (which may have been the point . . .) Anyhow, thank you for the thoughtful gift! And thanks to all the visitors we've had lately—neighbors, old co-workers, family, friends. . . BIG love, to all. . . of al things, I am most grateful for everyone in our lives, near and far, who are on this journey with us . . .

xxooxxo j

Cancer Conundrum. Or, What Not to Say to a Cancer Warrior.

I've been finding myself biting my tongue a lot lately. And eating many of my words, to the point that they've become the bulk of my nourishment these days. After a year of all this shit, I should know better, I really should, but still, words fail me. Miserably. Horribly. Sadly. In spite of witnessing the horrors Bob has survived in the past year, of living them as closely as I can without actually experiencing them myself, I should know better. I do know better, but sometimes, in the heart of the matter, I forget . . . I'm sharing this in the hopes that maybe you all can learn from my mistakes. To think before you speak. To try, somehow, to realize the impact of words, in light of a situation, no matter what it is. . .

So, this latest setback—the clot in Bob's leg—we're told, is not a big deal, nothing to fret about. Happens all the time, we're told, given the limited mobility, the sedentary lives many patients live here at Bethesda. Thing is, Bob hasn't been exactly sedentary or bedridden while at Bethesda. He's been up and at 'em by 7 nearly every morning, and goin', goin' goin', with PT, OT, TR, wound vac changes, MIST therapy, doctor's visits, psychiatrist visits, chaplain visits, blood taken, meds and IV changes, meals and vitals snuck in between . . . oh, let's not forget the showers, clothes changes, several visits to the Throne (aka, commode) and maybe a power nap or so along the way . . .and, he's been taking a full aspirin and Plavix since his last MI. So, the latest "setback" doesn't mesh with what we're told is "the norm" at Bethesda, has defied all the "rules" that we're following, that are supposed to protect him from such potentially dangerous setbacks, and that's probably what set this li'l redhead on a crying jag, demanding to see Bob's doc ASAP because I need to talk to him now.

Because one more "setback" in Bob's world is a big fucking deal. One more sign to him, that he's not getting better, that things just ain't going his way, that so far, setbacks overshadow and outnumber progress about 10000 to one. A step forward is hardly perceptible. A step backward covers a helluva lot of ground, driving Bob deeper into the thick, sopping quick-sand world of despair, depression . . .

In other words, another "setback" is something Bob doesn't want to hear. Doesn't need to hear, but how do we ignore a leg that's swollen to 3x the size of the other, so taut and heavy with blood it's shiny-smooth to the touch and bleeds with the slightest bit of pressure. . . all thanks to a blood clot, which reminds us, with blinding clarity, that a previous cancer and treatments that occurred decades ago have left indelible marks in so many ways, most astounding, rendering Bob's blood prone to hyper-clotting. . . and blood clots are what caused three heart attacks that nearly killed him . . . so, when his doc and NP at Bethesda talk about blood clots as being "no big deal," that they'll tweak this med, take that one away, add another one—well, that's all it took to get this li'l redhead's head to start spinning and words to start spewing and tears to start falling and there's no stopping till someone hears her, till an intervention or something more effective is done.

"You can't treat a blood clot without taking into consideration Bob's heart, and Bob's past cancer history and all the complications he's had this past year—they're all inextricable, all impossibly inseparable, that by messing with one thing without taking into consideration the whole picture can send Bob into a tailspin . . . ultimately, he's the one who suffers from the tweaking and tinkering—I've seen it more times than I can tell you . . ." I go on to say that Bob's cardiologist at the U is one of the only docs who has truly shown a personal, vested interest in Bob's complicated condition, being he's saved Bob's life not once, but twice, and he is the only person (God's not a person. . .) who is allowed to make any changes to Bob's heart/blood meds, and that they have to call him before any changes to blood thinners are made. . . I think I scared the bejeesus out of Bob's NP with my crying jag, because she said she'd make sure Bob's doc would be in ASAP the next moring, and to make sure I was here, to tell him everything I just babbled to her (she didn't say babble, but that's essentially what I was doing . . . )

Next day, Bob's doc at Bethesda (have I given him a name yet? I don't remember. . . will have to look back on previous entries before I anoint him . . .), and in his typical confident-bordering-on-arrogant manner, starts giving me the spiel about how any patient who develops blood clots is given the Coumadin/Lovenox combo and it wasn't really necessary to call Bob's cardiologist at the U because—I interrupt him, my voice thin and quivering, tears pooling in my eyes, telling him that I've seen, more times than I can count, doctors, who don't know Bob's complex medical history, doing things to him, based on "average patients" that result in horrific outcomes. In the next hour, our conversation turns into a very revealing one; the staff at Bethesda had no idea, truly, the extent of the past year of Bob's life. They get patients from hospitals with specific, immediate instructions and often don't delve deeper into the patient's background because it often isn't necessary. . .

I find out that they had no true knowledge of Bob's year long journey, that the current cancer was a secondary cancer resulting from the treatment of his Hodgkins, over 30 years ago . . .that he suffered two heart attacks in the past year, subsequent and countless complications along the way, wasted away to 100 lbs. in the midst of it, that his surgery was supposed to have been in April, but had been postponed till August, thanks to the MIs (the NP didn't even know that Bob's wound site was the result of the 13 hour surgery to remove a tumor the size of a softball . . . ), that we still don't know if he's "cancer-free," because the tumor had infiltrated a vein that leads to the lungs, a primary source of metastasizing . . . I looked at them with something akin to horror. How could you not know all of this?!? How can you give Bob the best and most appropriate care possible without knowing all this?!

I learn of another huge gap in the healthcare system: patients that come to a facility like Bethesda arrive with basically only the instructions they are given from the referring hospital. In Bob's case, the only "active" issues were the IV nutrition (the TPN), and the IV antibiotic which was prescribed to treat the wound as it heals. Anything else is essentially ignored. Bob doesn't have "active" oncology issues, doesn't have "active" cardiac issues, doesn't have "active" orthopedic issues, from the Bethesda point of view, because the U didn't specifically mention them . . . but that doesn't mean they don't exist!!!

"What the hell??!!?? So, seriously?!? A few bags of IV medications are what 'qualified' Bob's stay here?!? It doesn't matter to you that he's had a year long battle with cancer that's wasted his body to nothing, doesn't matter that he's had two heart attacks (technically three, but who's counting?), countless complications as a result . . .doesn't matter that he endured a 13 hour surgery that removed a tumor the size of a softball and a chunk of his pelvis, as well . . .doesn't matter that he has no function or feeling in his pelvis, that he's shitting in a diaper, peeing in a tube, that you guys think that because he doesn't need TPN or an IV antibiotic any longer that he's 'well enough' to go home?!?" Clearly, I don't understand the rules of this game, never have, never will . . .

Bob's doc listens patiently as I release my tirade, and as the words tumble from my mouth, I become more and more clear with how this game works . . . kind of. Patients are referred to Bethesda to be treated for specific issues, nothing more, nothing less. . . they treat the issues "at hand" but don't bother with any residual, "unmentioned" issues. . . as we talk, I "get it," but really, I don't "get it. . ."

"But seriously??? How can you treat his blood clot without knowing about his previous heart history, or about his previous cancer history?!?" I ask, incredulously. "None of what's going on with Bob is a separate issue; one begets the other and vice versa—I've seen it more times than I can tell you, it's all entwined, all related, you can't treat one issue without knowing about the rest. I'm not a doctor, but I'm telling you what I've seen, for a whole year and counting . . ." And how can you do PT and OT without knowing that a huge chunk is missing from his pelvis and all that went with it—wouldn't that dictate what can be done with PT/OT?!? And right now, I tell his doc, this is what Bob thinks his life will be like. This is it. Sitting in a wheelchair. Dependent on someone for every aspect of his life. Hasn't been out of a hospital in over three months. Prior to that, spent more time in a hospital than at home for the past year. And, no one has told us that things will be any different. Not a fucking thing. And you wonder why Bob's depressed beyond belief and not responding to your medications, I ask.

We came here so Bob could rehabilitate from the surgery but his history is so much more than that, and we've never been given a long-term plan set up for us, I continue. . . there's so many things unaddressed: the colorectal/urology issues, the wound plan, follow-up with the orthopedic surgeon (are the pelvic bones shifting and healing like we were told they should? We have yet to have follow-up x-rays or anything regarding that . . .), so many follow-up specialists that have yet to get back into the picture since the surgery. . . who the hell is going to fix all that for us? Answer those questions? Address those concerns? Put all the pieces of the puzzle together for us?

Bob's doctor listens to me intently, and finally, when I've lost steam and my story sputters and stalls and I start repeating myself, he tells me that this is the first time he's had a full, detailed account of what Bob's been through this past year. He tells me that when patients come to Bethesda, they come with specific instructions on what to treat, and not much more. Even though they get the full report from the referring hospital, so many patients have critical, immediate issues to treat that everything else becomes secondary. He asks what plans were made at the U for followup for Bob. Nothing, I tell him. There have been so many interruptions, so many setbacks, critical issues to deal with that any kind of "moving forward" plans have been thwarted or simply not been addressed. So, "setbacks" have been the norm, not the exception, and is beginning to feel like they'll never go away.

In his take-charge manner, Bob's doc says this is his specialty. He loves putting intricate, complicated puzzles together, orchestrating the people needed to address all the things I brought up. He tells us he will set up follow-up appointments with urology, colorectal, oncology, orthopedic, psychology, physical medicine and rehab . . . as our conversation continues, I start to feel a heaviness lifted from my shoulders, a fog dissipating from my brain, my heart rate slowing, my breathing less labored . . . I look to Bob and his expression has remained the same, throughout the hour-long conversation. Flat, expressionless . . .

So, all this rambling means many things, most of which meaning there's not enough time on this earth to begin to explain . . . to someone who's recovering from a certain hell, so much of it, likely, are things none of us will ever begin to comprehend. As such, if there's one thing to come of all this, it's the lesson in what not to say to someone who has spent the entire year fighting for his life, to someone whose been dragged through hell, hung up to dry and then dragged through hell again, lather, rinse, repeat.

You do not say, "Bob, I know this is easier said than done, but you have to keep fighting. . ." Because what you'll get is a look that would spear you to the wall, if it could. Followed by, "What the hell do you think I've been doing this whole year? Sitting around with my thumb up my ass?"

You do not say, "Don't be discouraged by the latest little setback! Didn't you hear them? It's super-common! It's no big deal!" A year filled with setback after setback doesn't make the road any easier. If anything, it saps the energy, burns what little resources are left, as though "setbacks" are the way life will be from here on out. to hear the tiresome pronouncement. Don't act surprised if you're delivered a well-placed bitch-slapped across the head after uttering such a statement. You will have deserved it.

You do not say, "Bob, we knew this would be a long, hard road, and the harsh reality is that only you can do the hard work of recovery . . ." Because that would be followed by, "So fucking easy for all of you to say isn't it? In your perfectly healthy bodies, that do what you want them to do, whenever you want them to do, whatever you want them to do . . .I'd love for you to live in my body, for just one day, then come back and say that to me . . . "

You do not say, "Bob, we were told that if you didn't go through with the surgery, we would have been preparing for hospice . . ." Because that would be met with, "Right now, that sounds so appealing—at least I'd have died with my dignity and self-respect in tact. . . "

You do not say, "I know you'll get better, Bob! I just know it! I feel it in my heart . . . " Because that will be met with, "You don't know shit. Nobody knows shit. No body knows a fucking thing, not even the doctors . . . "

You don't say, "Leave it to God, Bob, don't fight so hard, don't try to control what you can't control. . . ." Because that will be met with, "If I don't fight, who the hell will do it for me? There's no guarantee, no assurance that God or anyone else is gonna do it for me . . ."

You don't say, "God doesn't give you any more than you can handle, Bob." Because we see every day, people at Bethesda, people on the nightly news, that have definitely been given more than they can handle. And there are days, many days, where I've felt that Bob has been given way more than a person could, should ever have to handle in a lifetime . . . I know very few people who could have withstood all that Bob has been dragged through . . . but, how much more can a person expect to "handle?" An easy cop-out "thing" to say when we're secretly grateful God hasn't tested us in this way . . .

Let's get one thing straight, peeps. God had nothing to do with any of this. If there's one thing I do know, it's that God doesn't make this shit happen to people and God doesn't fix it, based on how hard you pray, how much you believe, how much you "sacrifice." World doesn't work like that. If you really, truly believe that, then you be the one to tell that to the families of the two women who were senselessly shot in convenience stores in small-town Iowa, by some fucked-up 17 year old who laughed his ass off while being hauled away by the police. Tell me—no tell their families—the reason behind that. And don't give me the shit, "Only God knows the reason. It's not for us to know." No, the reason we don't know is simply because there is no reason. Life never makes sense. Even in wonderful events, it doesn't make sense. It just is. Leave it at that.

Or a variation on that theme: "You're so strong, Bob! The strongest person I've ever known!" As if he has a choice. As if those who die from illness, injury or other adversities in life weren't strong enough . . . see where that "logic" is going, peeps? Again, were the women shot in the Iowa convenience stores "not strong enough" to overcome their adversary? Oh, no wait, I forget the other "argument" that neatly sweeps things under the rug: that it was their time, that God wanted them . . . in that horrific way . . . again, tell that to their families . . .

The only reason I know what I know, is because if God does make this kind of shit happen to people, then that is not the kind of god I will ever follow. Ever. And I'm pretty sure my God's okay with that. Best we can do is simply say, "I'm so sorry." or "I don't know what to say," or "I'm keeping you in my thoughts and prayers." Simple, peeps, it really is . . .

And, after that rant, because sometimes that's what a girl's gotta do or her eyes will pop right of her head if she doesn't let off some steam, I wanted to share some amazing things that happened today. . . in spite of feeling like shit today, Bob went to all his PT and OT sessions (he'd missed most of them all week), and bent over, pulled a pair of pajama pants on, stood up and pulled them up to his waist. By himself. Followed by a pair of socks.

Big fucking deal? You bet it was. Last week, he could barely bend over to scratch his ankle; last week, he needed help with all his clothes. Bob's OT and I were ecstatically astounded at the very visible progress, in spite of dragging a 20 lb. blood-engorged limb along for the ride. He gave us that "look," the one that said very clearly, "So I pulled up my pants. Who the hell cares?" . . . all I can do, in spite of the looks, is hold onto moments like these, cling to them dearly, like a toehold on a sheer-faced cliff. And cheer him on, in spite of the looks. Being careful what I say to him, after the cheer. . .

Again, thanks for letting me vent. You know as well as I do that the perspective will probably change again, probably by the time I wake again, in the morning . . .

Have I said this before: "It's always something . . ."? if so, let me reiterate . . .

Subaru is sold, house is up for sale. I listed the Sube on CarSoup and sold it in two days, to the first buyer interested, a souper-douper (ha—get it?! CarSoup? Souper-douper? ummmm . . . nevermind . . . ) nice family guy looking for a reliable used car for his soon-to-be-driving twin daughters. Had the Potential Buyer (PB) meet me at Bethesda for a test drive on Friday—I told Bob, as I headed out to meet the PB, to call the police if I wasn't back in an hour. The fact that the PB showed up with wife and kids in tow did little to subdue the apprehension (read: outright terror) that gripped my heart as I got into the car alone with this complete and utter stranger for the test-spin, despite my outwardly chit-chatty demeanor. I mean, who knows—the wife and kids could be in on the gig . . . I took note of the make, model and license plate number of their vehicle as we took off and intended to text the info to Bob.

Fortunately, I came back from the test-drive before I could finish the text (I'm waaaay bad at texting, peeps), in one piece, in the front seat (not bound and gagged in the trunk) and the car was sold the next day. I am forever grateful I wasn't dismembered by a serial-killer-family and grateful the family, who were truly nice as all-get-out, loved the car and made the whole process about as painless as a private-party car sale could be. I am confident they'll have at least as many, if not more, years of great service from my cute li'l Sube as I did.

I likely could have sold the Jeep as easily; even though the Subaru got better gas mileage and was paid off, the Jeep is Bob's vehicle, and in my heart, I just couldn't sell it. I am still confident that one day in the not so distant future, he'll be behind the wheel again, and when he's ready, I want his car to be waiting for him. I'll sure miss those heated seats, though . . .

And, can I just say that I am beyond grateful for Penny and Jim and all the hard work they did for us earlier last week—got the decks stained and the garage cleaned before the first winter storm of the season hit. No way I could have gotten those projects done without their help, not without sacrificing my visits to Bob. House went on the market officially on Friday, so I've been cleaning and purging like a madwoman to make the joint look like it's oh-so natural for us to live in such pristine digs. I'm hoping the good vibes of the Sube sale will carry through to the house . . .we just need that perfect artist/Unibomber/meth lab-type buyer to see our cute li'l house in the big woods and deem it perfect for his/her artistic or other endeavors.

There has been talk of Bob's discharge from Bethesda to a short-term acute rehab unit sometime this week, but that plan may be on hold. A clot was discovered in his right leg this morning (a deep vein thrombosis, or DVT, as it's called) which has been the source of recent increased swelling, pain and discomfort in the right leg. He skipped all therapies today, because of the discomfort, as the immense swelling does inhibit movement to a degree. Right now, his right leg is at least double the size of his left.

I'd noticed it yesterday as I was helping him get ready for a shower. "Holy shit! Your right leg is HUGE!" was pretty much the gist of my astute observation. I called Bob's nurse in to take a look, pointing out that it had just been his foot for the past week or so that had the swelling, but now it was his whole leg. She put in a request for the weekend doc on staff to come in and take a look. The doc stopped later, looked at Bob's leg, and recommended Lasix (a diuretic) and more fluids (seemed contradictory to me, but she said it was a delicate balancing act—to reduce the swelling but to keep Bob's fluid intake up, as he's supposedly been dehydrated, as well). This has happened numerous times throughout the past year, but never this bad. I asked if perhaps an ultrasound should be done, too, as this looks far worse than any other swelling that he's had in his lower extremities in the past. She ordered one for the morning, and left us with the assurance that they'd keep an eye on the leg overnight, but that she was pretty sure it was simply lymphedema, a condition caused by damage to the lymph nodes of a limb, which likely happened with Bob's surgery. If the lymph nodes of his right leg were damaged or removed during the surgery, fluids that are normally filtered out of the body via the nodes end up with nowhere to go, hence the swelling.

So this a.m., an ultrasound was done and by the afternoon, the NP who works very closely with Bob's primary doc told us it's actually a blood clot that's causing the swelling and as a result, his blood thinning meds have been adjusted to treat the DVT. I about blew a gasket over that (whatever the hell that means), telling her that NO ONE messes with Bob's meds except his cardiologist at the U, who has saved his life not once but twice and knows his cardiac history intimately!!! And yes, I started crying, again, but no f-bombs, this time. I do love his NP—she's an amazing woman and I sometimes forget she's not a doctor, because she's so thorough, so knowledgeable and confident, yet very compassionate. I apologized over and over for overreacting, but I've seen—more times than I can count—seriously adverse outcomes when doctors, who don't know Bob's history intimately, start messing with his meds and treatments. . . she assured me that what they are doing is even more effective at treating blood clots than just the Plavix and aspirin, and that she'll make a call to the U in the morning, to consult with Bob's cardiac team, as I requested, as well. She also assured us that this sort of thing is so common at Bethesda, because so many patients aren't very mobile (and factor in Bob's cancer, which has also affected his clotting ability); therefore, blood isn't being circulated through the body as it normally would. As a result, it pools in the limbs, gets thick and has a higher risk of clots forming. She continually reassured that he will be very carefully monitored and treated . . . once again, such a delicate balancing act, to treat one condition while not upsetting the status of another . . .

I'll hopefully get a chance to talk with Bob's doc tomorrow and have more details about this newest setback. It's a hard position to be in, to tell Bob once again, that hopefully this is just a small set-back as the NP said, that we simply have to realize that that's how this path is going, a few steps forward, one step back . . . but for the love of God and small children, this path really needs to take a different turn sometime soon . . . I keep trying to assign an "end date" for all this shit, or at the very least, to finally be able to say we've had one really "Good Day," and are truly seeing the pinpoint of light at the end of the proverbial tunnel. Not just an "okay day," or a "not too horrible day," or one Good Moment, but a real, honest-to-goodness entire Good Day. But I forget that this isn't in my control, no matter how badly I want it all to please, please, please finally end, to have Bob home . . . to really, truly feel he's on the safe and solid road to recovery. But, right now, "it" still just ain't happening. And it's getting old. Sofa king old . . . my hardest job is to continually remind myself that all this shit didn't happen overnight, and won't get "fixed" overnight. . .

I've included a very short clip of Bob walking with a cane at PT. This is the stuff that makes me simultaneously elated and heartbroken—it's a glimpse of how far he's come, but how far he has yet to go. It's not great quality, just warnin' ya, as I was pushing his wheelchair and trying to capture a few moments' of video at the same time. He was especially tired this day, and couldn't walk very far, so I had to put the phone away and help him back into his wheelchair. Thus, please excuse the poor videography. . . the line running from Bob's back is the tubing from the wound vac. And, you can't tell from this clip, but his PT has a Spock death-grip on the gait belt around his waist, because if she were to let go, he'd go tumbling to the floor . . . he's very self-conscious about me taking pictures, video, etc. of him, and I don't blame him, but at the same time, I want to capture, as best I can, his progress, his determined spirit . . . maybe at some point, he'll want to see, from our point of view, his own astounding recovery. What he feels right now isn't so amazing, but what I see, despite the setbacks, is breathtakingly so . . . xxoo j

Welcome to our world, Baby Otto Jon!

Okay, this post was going to be a completely different topic, but I just had to share the amazing news of the arrival of Otto Jon Staus, my freshest, newest nephew!!! He arrived by accident—literally—as my sister, Jill, was rear-ended while driving their 5-year old, Amelia, to school this morning. Car was totaled and the impact of the accident sent Jill into early labor, and eventually, her docs decided to perform a C-section this afternoon.

First and foremost, Jill, Amelia, the babe and their doggie, Holly (who was along for the ride) are all doing very well. Jill was scheduled for a C-section next Friday, November 19th, as the baby was getting HUGE, and she was experiencing severe complications as a result (see, she ain't a big girl normally, so to have Giant Baby inside of her was really starting to cramp her style. Literally and figuratively). So, an early delivery wasn't a bad thing, per se, but perhaps the way it happened was a little troubling, to say the least . . .

Little (big!) Otto weighs in at an impressive 9 lbs., 1 oz, and 21 inches. So much for being a preemie. . . Jill and babe are still at North Memorial for the next few days, for observation and to recover from the C-section. I was able to pop over to the hospital for a while this afternoon, got to see "Crash" (his new nickname, whether he likes it or not!) in the NIC-U, but wasn't able to see Jill. I did get a call from her tonight, and she said she's doing okay, though will probably feel more of the effects of the crash tomorrow . . . I am so happy for the new addition to the Hildebrandt/Staus families! A fresh, new baby always adds an extra element of awesome wonder to the holidays, and to life in general!

Bob had a few visitors this week—Wally, one of Bob's oldest friends, whose friendship dates back to grade school (back when cave children rode dinosaurs to school and carved multiplication tables on slate slabs with burned sticks . . .). Wally brought the poster display and guest book from the benefit dinner and class reunion that was held in St. James this summer. What a great gift—I put the poster up on the window ledge in Bob's room, along with the guest book, so they're the first thing you see when you walk into his room. Also, Lynn, a colleague from the wine biz popped in last night, on his way home from work. . .they talked shop a bit, caught up on lost time. . .

I know it does a world of good for Bob to see people outside his "medical world," people who have lives and work and connections to Bob beyond the walls of a hospital. I love to see the expressions on Bob's face and hear the change in his voice when he visits with "new" faces; it's more animated, more expressive, and at the same time, more relaxed . . .

Bob 's docs are talking about a discharge date from Bethesda sometime next week. His medical conditions (the things that "qualified" him to be a patient at Bethesda) are resolving themselves to their satisfaction—he's no longer on IV nutrition, and his wound is healing amazingly well to the point they may be discontinuing the IV antibiotics. However, they are also saying he'll likely be referred to an acute rehab facility for another few weeks, to really focus on PT and OT services. The goal is to get him as strong and as independent as he can, before heading home (where out-patient rehabilitation will continue) . . . exciting as it is to think of Bob coming home soon, it's also scary. It's been 2 1/2 months since he's been home and his body and life have been drastically altered since. I know he's not thrilled about the idea of spending another few weeks in yet another facility, but there is no way he'd be able to be safe at home right now, even with me there, 24/7. He's still not "there" yet, though I'm sure he'll make progress by leaps and bounds being home, surrounded by his things, being in a familiar environment, no beeping IVs, no aides coming in to check vitals every hour, no shitty food (well, I can't say that last one with 100% certainty . . .)

As such, with all that's gone on this past year, we finally made the decision to put the house back on the market again. It's too much house, land, and work to be living out here, when it's just me taking care of the joint. It'll likely be many months before Bob will be able to operate a lawn mover or a snow blower, or drive a car, for that matter. Penny and Jim help as much as they can, but they're 2 1/2 hours away and have their own home to care for. . . our lives are very different than what they were even a year ago, and this house doesn't fit into the equation any longer. My hope is that it sells for our listed price, and that we can move back into the city, closer to doctors, hospitals, family and friends . . . not that we don't have friends out here in the "boonies," but remember, it takes 20 minutes for an ambulance to reach us, an hour to shovel out the driveway and walks, and the fact I'd have to go back to work full time if we stayed out here, leaving Bob alone in the house . . . just doesn't work any longer . . .

And let's face it, it's simply a house, a thing. A thing that is not worth crying over, scrambling like mad to try to save, or giving up and going into foreclosure over. My husband, however, is

worth crying over, scrambling like mad to try to save, is completely, utterly, absolutely worth fighting for. Out here, I feel much more isolated, so far from help, should we really need it. I am dreading the upcoming winter like never before. Even though one of our awesome neighbors have arranged to have our driveway plowed, I will still be making that long drive to and from work, leaving Bob alone out here . . . I am more than ready to leave this one behind, simplify our lives for a year or so as Bob continues his rehabilitation and recovery.

But, I am also prepared for the possibility that the house may not sell. It's a tough market, and with winter and the holidays are coming up, as such, things aren't stacked in our favor. But we won't know until we try. There may just be that perfect buyer waiting 'round the corner. We'll keep you posted. . . (pic above is Gramma K, Amelia and Baby Otto John . . .)

A note on visitors . . .

I've had several people ask me lately if Bob can have visitors at Bethesda, and to that I say, "Come one, come all!" No, seriously. We've finally figured out the routine around this joint and have a pretty set schedule from day to day. I know it would do a world of good for Bob's spirits, to see some mugs (other than mine), better than what any drug could accomplish. Overall, he's in far better shape than he's been in a long time and is much better company that he was even just a few weeks ago. He might even stay awake for most of the visit!

Bob's been so disconnected, literally checked-out, from the world for so long, and as such—I've said it before—he truly has no idea whatsoever just how many people have been keeping him in their thoughts and prayers, holding him dear to their hearts, rooting and cheering for him from afar. Up until recently, having visitors has been so hard, with all the crises, or the recoveries from crises, or because he's been so very wiped out from meds or his condition in general, all has made it really hard to see anyone other than immediate family. And I get it, too, peeps, from your point of view: it's been hard for you, too, as friends and family, to be watching this Krazy Karnival ride play out over the course of the past year, and the apprehension, fear, whatever it might be that many must feel about visiting Bob. I get it, I truly do . . . and I also say, "Get over it!" (said with all the love in the world . . .)

Please don't feel bad if you think you "haven't been better keeping in contact," or think you have to have the "right words," or worry about saying the "wrong thing" (starting to feel like Chris Farley's motivational speaker character, throwin' emphatic finger-quote gestures all over the place . . . ) because none of that matters. (Weeeeeeellllll, except for a few of "those" phrases you all know by know that I despise with a passion . . . that, everything happens for a reason, or God doesn't give you any more than you can handle, for example. Steer clear of those, peeps, and you won't get bitch-slapped into next week . . . ;)

Other than me, his parents and a handful of visitors, Bob's social circle has diminished considerably, encompassing mostly medical professionals. Sounds impressive, but I'm here to tell you, most are not people with whom I'd care to sit around, have a beer and shoot the breeze. Nothing personal, but really, our family and friends are waaaaay more fun than anyone in a white coat. And we miss you! All of you!

So after all that rambling, the lowdown on visiting is this: Monday through Friday, they keep Bob pretty busy, crackin' the whip from about 7 a.m. till 3 or so. During the weekdays, daytime hours are really hard to fit visitors in, between therapies, wound vac care/MIST, doc visits and a much-needed nap. But, after 4 p.m., things calm down and visits are totally welcomed—especially if you're bringing dinner (and beer. Oh, kidding. Kind of.)! No, really. I still can't figure out the Big Hospital Conundrum: in a place that's supposed to be healing patients, they're simultaneously trying to kill 'em off with shitty food. Anything is better than the Puke on a Plate served here, so feel free to come bearing gifts of food! (How's that for shameless begging?)

Saturdays are busy in the morning: usually a session of PT then pretty much free for the rest of the day. Sundays are a total free-for-all. No therapies, no wound vac/MIST (unless an emergency comes up, like it did yesterday—lots of bleeding from the wound suddenly, right before we were heading down for PT. Being on Plavix and aspirin, Bob is easily prone to bleeding, and for some reason, his wound started bleeding like a stuck pig and wouldn't stop. The bleeding site was just a tiny spot, most likely new tissue that had been irritated by the dressing or vac, but because of the anticoagulants, any little nick or cut can bleed like crazy. Ended up interfering with the morning session of PT, to remove the wound vac, clean the mess, stop the bleeding and put a new dressing on. For now, the vac is discontinued, to let the irritation settle down, and will be started up again on Monday.

To sum it all up in a neat, tidy little chart, visiting hours are as follows:

Monday - Friday: after 4 pm

Saturday: after noon

Sunday: all day

Speaking of visitors, I just have to give a shout-out to one of our frequent visitors, a long-time friend of Bob's, dear Paulie, even though I know he's going to be embarrassed as hell about it. Bob and Paul were roommates (along with Brian, Nancy's husband) many years ago. Paul lived in Mpls. until just recently, when he moved to out-state New York for a new job. He comes back to the cities every few weeks, and makes it a point to come visit Bob every time he's in town. Doesn't matter that Bob often sleeps through the entire visit (there's still moi to visit with—I'm witty! I'm fun! I'm funny! I'm . . . okay, I'll shut up . . .), he still shows up. When Bob had his first heart attack nearly four years ago, Paulie again came to visit Bob nearly every day, even if it was just to pop in, give us all a hug and leave. All of our visitors have been such a treat, and are such a blessing, so much appreciated and welcomed, but I just had to single Paulie out because even though he's a big, burly dude who likes to get into bar fights (just for the record, he doesn't instigate them. He just finishes them), he's a softie at heart, and such a good friend . . . we love you, P-man!

Anyhow, that's the skinny on the visits. We'd love to see you, even if you only have a few minutes to spare. It'd be nice to reintroduce Bob to the real world again . . .

LOVE! to all! xxoo j

Another year, another election down the tubes . . .

This is the first election year Bob didn't vote, in all the years he's been a legal, registered voter. He's such a history-political geek, I'd bet money that as an underaged teen, he probably had a fake ID—not to purchase booze with—to vote. I suppose we could have procured an absentee ballot for him, but pretty sure he's feeling just a little out of the political (and otherwise) loop, being so disconnected from everything for so long . . .

I left the hospital midday to run some errands (seriously, haven't been to Target in over a month. I'm sure 3rd quarter sales plummeted, thanks to me) and was able to swing by the polls and cast my vote. Even for me, it was hard; other than the major races, I was pretty clueless about the other offices up for grabs, so I did what any good uninformed voter would do: wrote my husband in for a few seats. Though about Sheriff, but figured it might be too strenuous for his first public servant gig. Instead, I scribbled Bob's full name name in for Water and Soil Conservation and a judge position or two. Yeah, I know, wasted votes . . .

Rehab isn't going as fast as Bob would like it to go. I keep reminding him of where he's starting from. Basically, zero. It took a year to get to this point, it's gonna take a while to recover. In rehab today, as Bob was working on his exercises, I watched a young man, who appeared to be completely paralyzed, being lifted from his wheelchair to a large, low padded platform for his exercises by a Hoyer lift. Wasn't that long ago that nurses were using one of those to get Bob in and out of bed. . .

I'm filled with equal parts elation and heartache when I see Bob working in PT and OT. I can physically feel my heart swell when, each time he goes to to therapy, I see that he is stronger than he was last week: he does a few more reps, adds another pound or two to the weights, he tries new things with each session . . that even though he grumbles when the PTs and OTs push him, I know he likes the extra dose of "tough love," because that's the kind of guy he is—determined, motivated, strong. But I can feel, to a tiny degree, what he feels inside, that for all the exhausting efforts, it's still going to take weeks and months of strengthening, exercises, stretching, to get to a point where he feels comfortable, truly at ease with his new body and how it works now. I have to really fight back tears when I see how hard he's trying and sometimes things just aren't there yet for him, and how frustrating that is, and that the exercises sometimes take so much out of him that he'll sleep for a good two hours after . . . I see how hard it is for him to get that damn right leg to move the way he wants it to, or to walk without the walker, or to get out of bed by himself. He curses the body that now, does nothing right, nothing the way it used to, doesn't listen to him when he whispers between clenched teeth, "Come on, foot, move with me. . . "

When he walks, he has to think of so many things: not leaning too hard on the walker or his arms and shoulders will pay the price (and inhibits his progress if he relies on the walker too heavily), standing straighter, looking ahead of him, not at his feet, taking a big stride with his left foot, using more of his adductor muscles in the right leg to keep his foot from swinging out to the side . . . that's just walking, peeps. Think of all the things we do, all day long, day in and day out, that we don't think about: getting in and out of bed, getting up off a chair, brushing our teeth, taking a shower, going to the bathroom, getting dressed, eating . . . each of these things takes concentrated effort on Bob's part. No wonder he's often dropping off to sleep when he has some down time. I think of all the things we haven't even tried yet, and know we have a long way to go before he can come home.

Last week, I asked his primary doc what sort of mobility and movement can Bob expect to recover, given the nature of his surgery, the nerve loss and such. Right now, it's so hard for Bob to get excited about all the hard work he's doing, as he really doesn't know just how much he'll be able to recover, how much he'll eventually be able to do again. At this point, Bob feels this is it, "this" meaning the state of his body right now: walking (and not very far, in the grand scheme of things) with a walker, so limited in mobility and/or ability to do much of anything right now, far from being independent. I told Bob's doc I think he could use a dose of realistic insights, based on his situation, to perhaps give him something to work for, that proverbial light at the end of the tunnel.

I love it that Bob's primary doctor defers to another specialist when we speak of issues out of his realm of internal medicine. He's confident almost to the point of arrogant about his IM knowledge but also knows when to bring another specialist in when the questions we ask are out of his realm. His doc said a Physical Medicine and Rehabilitation doctor would be the best person to talk to about that.

Next day, we're paid a visit by the PM&R doc. I relayed the same concerns to him as I did to Bob's primary. The PM&R doc looked at Bob, almost in shock and said, "Oh, Bob, I hope you don't really believe that you're not going to get much better that where you are now! No, no, no—even with the foot drop and nerves that were lost, you will be able to regain strength and mobility again, even be athletic, if that's your desire." He went on to explain the amazing world of orthotics and how there's one to fit every person, every lifestyle. "It will take a long time to recover from all you've gone through, no doubt about it, Bob, but with physical therapy and your motivation and determination, I see no reason why you can't resume much of what you did prior to all this." I was encouraged by his words, but I could tell Bob wasn't much. I know it's gonna take more than a pep talk by a doctor who just met him, so we'll persevere. . .

And here at Bethesda, we may have discovered Bob's new calling. Jewelry making. Yes, I said jewelry making. See, he goes to recreational therapy (or is it therapeutic recreation? I always forget . . .) once a week; the first time I went with him, the RT's were all happy welcoming, "Hey, Bob! Welcome to Recreational Therapy! Here, you can do all kinds of cool things, like paint a bird house, make a ceramic trivet, play a game—we have tons of board games. . ." Bob just stared at them. He wasn't biting. When they turned away for a minute, he said, "What the hell, am I at summer camp?" I told him to just go along with it, be a good sport, see what it's all about. We played a game of Yahtzee that first session, that took up the entire half hour of RT, so he didn't have time to do anything else.

Next session I missed, as I'd ran home to let the dogs out. When I got back, we were sitting in his room when he suddenly said "Oh, wait, I have something for you." He reached into his jacket pocket and pulled out a little baggie. "I made this in therapy today." I pulled a lovely, sparkly turquoise and crystal beaded necklace. "You did not make this!" I said, fastening it around my neck. "There's no way I can picture you stringing beads to make jewelry—they must have drugged you!" Penny and Jim vouched for him; they said Cindy, the super-nice woman from Transport whose job it is to bring patients to and from therapies, talked him into making the necklace, because she's seen other patients come through with beautiful jewelry made from their very own hands. When I got home that night, I dug through my vast collection of earrings and found a pair that matched the necklace, like they were made for each other! I wore them to the hospital the following day, and made it a point to tell everyone I could that he had made the necklace for me. . .

Today, it was a pair of earrings. Beautiful, earthy, dangly earrings made of stone and silver beads. I told him he could be making all his Christmas presents while he was here. Place your orders soon, or you won't get yours in time for the holidays . . .

Eyes very sleepy, not a monumental amount of news to share (funny how I can still ramble on endlessly even without tons of progress to share, huh?), but still celebrating the baby steps, even when they so small, they don't feel like they're taking us anywhere . . . and the beautiful November weather. . . tomorrow is a busy day—PT twice, OT, wound vac change and MIST therapy, maybe try to sneak another shower in. I helped him with one the other day, so if he does want one, we don't have to wait around until a nurse or an aide is available. . . off I go. . .

xxoo LOVE! Jen