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