Weekly Update with Bob & Jen . . .

I probably should be updating more frequently (would certainly cut down on the length of my blog entries, that's for damn sure), but I truly don't have a lot to report, so that's a good thing, right? I mean, I could write daily, but it'd be mundane ramblings that would bore you all silly. I could go on and on about my recent virgin voyage/drama with contact lenses, or how Gaia snagged a dead red squirrel on our walk one day and wouldn't give it up for nuthin', or the four-day computer-switching/office cleaning project I embarked on, or the snow-blowing/shoveling/roof-raking hell I've been subjected to lately, or all the cooking I've been doing—two words about that, peeps: roasted veggies! But I'll spare you all that . . . maybe I'll just toss in a few pictures here and there, for visual appreciation. (And now that I'm proof-reading this entry with the pictures in them, I realize the pics are truly random and have no connection whatsoever to the paragraphs they're nestled against. Just warnin' ya . . .)

Still quiet, still uneventful days out at Wrenwood, still no trips to the hospital for anything—oh wait, that's not entirely true—we did have the appointment at the Long Term Follow-Up clinic at the U last Friday, which I'll get to in a few minutes, if I remember—still wishing and hoping this World's Longest Winter would just dry up and move on, already. Sofa king sick of it . . . my sister reminded me that last year, mid-March, I had posted a pic of Bob and me sitting on our deck in 60 degree temps, enjoying a beer (well, I was enjoying the beer. Bob was on shitloads of pain meds at that time and wasn't able to partake in malt—or other alcoholic—beverages). So, those days aren't far off, right? Please, someone dangle that carrot in front of me, tell me that's the case . . .

Because of the swelling in both of Bob's legs, we'd been on a schedule of wrapping both legs

every day for about a week or so, but I'm not kidding when I say our days turned into an endless lymphedema therapy decathlon—I swear, all we were doing was wrapping, washing, hanging, drying, rolling leg wraps all day, every day, to the point we hardly had time or desire to do anything else. Not an easy task, as each wrap is over 5 yards long and each leg requires at least 5-6 wraps, plus a layer of padding and another layer of stockinette under the wraps. The padding looks like quilt batting and the leg wraps are similar to Ace bandages, but stiffer and come in a variety of widths. The area of wrapping determines the width of wrap to use. Poor Bob looks like the Michelin man when all is said and done, and is about as graceful. Having both legs wrapped makes walking awkward and uncomfortable, as the wraps, once bound around the legs, don't have much give. Moving around the house is difficult with the wraps on; pretty much extinguishes any desire Bob might have to get out and about in the "real world. . . "

There are basically two types of leg wrapping techniques for lymphedema—one is a reduction wrap, an intricate, labor-intensive and time consuming wrap that involves the three layers of wraps. First, the long, toe-less cotton stocking from foot to groin on Bob's leg, then we wrap the entire leg in cotton batting to protect from friction and too much pressure and top it all off with a semi-tight layer of 5-6 outer wraps, again, from toes to groin. That's the simple explanation, though there is a definite science and philosophy behind the size of wraps used, the amount of tension and method of layering the various materials that give the best results.

The amazing benefit of the reduction technique is that it helps move a lot of fluid out of the body. I told Laura, the lymphedema therapist, that we literally squeezes the piss right out of

Bob with this wrap! It significantly reducing the size of his right leg, and often helps with pain (reduces pressure on nerves) and mobility (once the wrap removed, that is). The reduction wrap is usually done during the day and kept on for 24 hours, then removed and rewrapped. It's done every day till leg measurements plateau and the patient is able to graduate to a compression stocking. Our routine has been to try to squeeze Bob's shower in right after removing the wrap (ideally, the leg shouldn't be left unwrapped more than an hour, as the swelling can return and result in having to wrap the leg for longer stretches of time), then wrap the leg.

We do daily measurements along various parts of the leg, and if the swelling has gone down enough, we can switch to compression stocking during the day instead of the reduction wrap. Still a pain in the ass (it's like TED stockings, if anyone's familiar with them, but they have much more compression ability. Bob's compression stockings go from foot to groin), but much less work and much more comfortable for Bob than the wrapping. At night, we do a maintenance wrap, which is a quicker, simpler (is that a word?) wrap that spirals up the leg (still using three layers of wrapping materials, however) and helps to keep the fluid at bay during the night.

The outer wraps and compression stockings have to be washed after every use, as they get stretched out and less effective at squeezin' the piss out of Bob, but when they're washed and dried, the elasticity returns. Ideally, the wraps should be air-dried (I drape them over the railing in the house and gently drag the entire length of each one along the railing to pull as many wrinkles out as I can before drying), as heat from the dryer can break down the elastic, but there are times that we have to, on the delicate setting, if the swelling in both legs is bad and we're doing daily wraps. The photo at the very top is not my latest home decorating project, btw; rather, it's a day's worth of leg wrappings drying on the railing. There are times when the entire railing is lined with leg wraps, when we've done it day and night, for a few days in a row . . . after they dry, Bob and I sit and roll each one up, ready to be used again.

After a week of this and sensing Bob's unspoken frustrations with the whole ordeal, I asked him what he thought of just doing the wrappings every other day, to give him a break from the tedious (and sometimes painful) daily treatments. He gladly embraced the idea, and it has made a world of difference, for both of us. Even though the daily wraps yield better results, isn't the whole point of hospice quality of life? Part of our challenge is finding that balance, in all we do. . .

Overall, there have been no dramatic changes with Bob's condition. He's still getting good sleep (though his sleep schedule seems to be kind of screwed up lately—gets up in the middle of the night to go to the bathroom, then is wide awake, so he heads out to the living room and watches tv, which leads to him crashing in the recliner for several hours . . . not good, restful sleep in my humble opinion, but hey, get the sleep when ya can, I guess. Not like we have a strict schedule to adhere to), his appetite is still strong, energy levels maintaining. If only the weather would clear up, it would be so much easier to get out and about. Right now, with all the snow/ice still hanging around, it makes getting out for Bob more treacherous; the walker gets bogged down with ice and snow and threatens to take Bob down, too. The wheelchair has its own set of issues in the winter, so more often than not, he passes at a chance to get out. I definitely see cabin fever setting in; maybe that's the cause of the interrupted sleep patterns. . .

I brought Bob's cameras upstairs the other day. He hasn't touched them in months. I want him

to show me how to use them, so we sat for a good hour, going over the cameras' features, the various lenses he has, talked about him going out into the wild and capturing his captivating images on film (well, not "technically" film any more, as his cameras are now digital). You should have seen his face, how animated and full of life, as he talked about the cameras, sharing his technical and artistic knowledge with me . . . haven't seen him that excited about anything in a damn long time. My heart swelled . . . and then my throat tightened as he said, "I wanted you to take me to a book store the other day so I could pick up some photography magazines . . .then I thought how stupid that was, because I can't do that any more . . ."

"Sure you can!" I countered. "We can get you out, Bob! We'll take a drive through Afton or William O'Brien state park, maybe even get you out on a paved path in the wheelchair—"

"It just wouldn't be the same," he interrupted quietly. "I used to hike off the beaten path, practically get lost in the woods, looking for subjects, photo ops . . . it just wouldn't be the same, Jen . . . " With just those few words, I knew deeply, at least to some degree, what he meant. . . and I know it'll be tempting to respond to this with all kinds of words of encouragement or whatever, but I'm asking you to please don't. I'm not saying this harshly; I'm saying this from personal experience. Unless you, personally, have been dragged down a similar hellish path that Bob has and are in hospice care, you simply have no idea the many, intense layers of emotions that come and go throughout the days, the hours, the minutes . . . even I, as Bob's full-time caretaker who is with him all day, every day, have no idea what this all truly means, what it really feels like, deep inside of Bob's head and heart and guts . . .

Soooooo . . . rumor has it, Nancy and her family will be flying to MN for Easter! So excited about this, to see the whole family again! Rocco will be bummed that their family pup, Casper, won't make it, but he'll get over it, once he's showered with extra human attention.

(This last pic is of Bob, Dan and Al, at Bob's benefit, toasting with a shot of Grand Marnier. Last time these guys did that, wasn't a pretty night for any of them, much to the chagrin of Wanda, Carol and me, who were left to pick up/ clean up the pieces . . . )

I think I'll save the visit to the U's Long Term Follow-Up clinic for another posting, and I promise to try to do it sooner than later. An interesting, frustrating, emotional visit (for this crazy redhead, anyhow; Bob, in spite of being in the throes of some intense pain that day, was full of composure and dignity, as he always is . . . ). So much to say about that visit and all that's wrapped up in it that it deserves a post all its own (and because this one is getting ridiculously long, for not having much to report . . .)

LOVE! to all . . . xxoo jen