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.