Weekly update. . . March 28

Not a lot to say/share these days, but I'll try to give a quick update . . . Penny and Jim have been with us for nearly two weeks, since Bob's condition started to go downhill. Things have plateaued and are now stable again, but not great, and certainly not back to the point we were when we first entered hospice, or even just a week and a half ago, as they were around St. Pat's (pic is from that day—first beer, chips and guac of the season, out on the deck). Oh, to have those days again. . . funny, what you wish for, given current circumstances and perspective . . .

Bob sleeps much of the day now, and when he's awake he often wrestles with confusion and hallucinations; it's hard to witness, as he sometimes realizes what's happening, but can't stop them and gets frustrated. The real hard part is to see him so confused about the day, his meds, things that he used to be so freakin' anal about . . . his appetite has been okay, usually not much for breakfast or lunch but he still tends to eat a decent dinner, maybe a snack in between . . . everything is much harder for him—moving about the house, getting to/from the bathroom, in and out of bed . . . gets winded very easily, and hasn't been up for any outings in a while. I got an e-mail from a cousin of mine not long ago; I was touched that she remembered the story I'd told (back when Bob was at Bethesda) about not getting to tour the state capitol as a 6th grader. She told me she has a friend who's a MN state rep; offered to give us the grand tour of the capitol, any time he's up here, in session. Even though Bob's been in the capitol before, he thought it sounded like a cool "field trip." Two weeks ago, I would have said, "Sign us up!" Today, I don't think it's in the plans. . .

Our days are pretty mellow, lots of sitting around, reading, watching TV while doing loads of laundry, still doing leg wraps and dressing changes, a daily shower still is a welcomed event. I'm still cooking up a storm, messing around (literally) in the kitchen—when Penny allows me in my kitchen, that is . . . ;) It's comforting to have them here with us, they're an immense help in so many ways—meal preps, running to the grocery store or Target for me, Jim likes to take Gaia on a slow, meandering walk (she likes it too), Penny helps keep the place spotless, keeps watch over Bob in a way only a mom can. . . forever grateful for all they've done and continue to do for us. . . funny, for as quiet and uneventful as the days are, they still go fast. The routine hasn't changed much: wake up, maybe have a bit of breakfast (bowl of cereal and fruit, at the most), then meds, remove leg wraps/stockings, take shower, dressing change, re-wrap leg(s), get dressed. . . then loads of laundry, maybe a little lunch, afternoon meds, several bathroom trips peppered throughout the day, more laundry, clean house in between, walk dogs in between, run an errand or two, if needed. Then prep for dinner, eat, clean up, nighttime meds, dressing change, one more load of laundry, then bed . . .

Nights, however, are another story, as that's when the "demons" come out. Bob becomes restless and agitated, doesn't sleep for very long, very quietly or very restfully; the first several nights of the past few weeks were non-stop activity—up to the bathroom, back into bed, then up to the living room, back to the bathroom; back to bed, then out to the living room again, lather, rinse and repeat over and over, never allowing more than a half hour's sleep at any given time, for either of us. A desperate call to the hospice on-call nurse at 3 a.m. one night reminded me that we had been given a "little bag of tricks" (given to all new Fairview hospice patients) back when Bob was first admitted to hospice, of Haldol, Ativan (two anti-anxiety meds) and a few other treats, to help address the various side effects, physical changes, etc. that are going on. I had shoved them into a drawer and promptly forgot about the, hoping we'd never have to resort to them. . . Haldol has proven to be the miracle med to take the edge off Bob's anxiety, helps him sleep for a few hours straight; when he does get up for a bathroom trip, he falls back to sleep again afterward. Ativan also works, but Haldol seems to have longer lasting effect. So far, at least for a few days in a row, we both have gotten some decent sleep, though I still pop wide awake every hour or so and have to check on Bob. . .

So about that Etsy/photography site for Bob's work . . . I haven't forgotten, haven't given up on it. I'm still working on it, but it hasn't been easy to squeeze that in with everything else we have in the day (you should see the sheer volume of photos Bob has! Incredible!! Makes for choosing pictures to print than many times harder . . . ) That, and I've been having printer issues . . . anyhow, will keep you all posted when it's up and running because I am still working on it, bit by bit . . .

Right now, as I type, Bob is actually deep in sleep, snoring, even. Who would have guessed even

that is a welcomed sound . . . g'nite, all. xxoo j

Tough week out at Wrenwood. . .

For the first time in I believe ever in the existence of this blog, this will be a quick one. Honest. Just felt I owed y'all a quickie update, since it's been a week . . .

We've been having some very tough days out here at Wrenwood over the past week and could use some serious peaceful, loving, healing vibes. . . not that you all haven't been so generous in all you've done for us, and you know me, I hate to ask for anything, but. . . whatever you're willing to pass along our way, we'll accept, with open arms and hearts . . . speaking of hearts, mine is heavy, so very heavy, as I type, I can hardly breathe under the weight of it . . . Bob started running a fever a week ago or so, followed by low-grade chills and body aches . . . then, the congestion in the chest, wheezing, labored breathing set in—at first I just noticed it at night when he slept, now seems to be present all the time . . . he's been sleeping a lot more, experiencing periodic bouts of confusion that I initially attributed to an increase in his pain meds, but we backed down on them and it's still present . . . the fever, chills, etc., don't seem to be responding to antibiotics. . . he seems much weaker, energy levels waning, appetite just hasn't been there all week . . . could just be a bug that Bob's having a hard time shaking, could be more going on. . . I was worried enough that I called Penny and Jim and asked them to come up, just to be with us, lend a hand, figuratively and literally. . .

I have this tendency to get a little freaked out and call the hospice on-call nurse when a new symptom arises or with any little change in Bob's condition. The result of this "advocacy:" when Bob's pain increased, so did his meds. Fever increased, antibiotics were delivered the same day. Labored breathing, suddenly an oxygen machine and a nebulizer shows up at the door. A few days ago, Bob said to me, "Jen, I'm in hospice—you can't keep fighting like this for me. Every time you do, another machine shows up, or another drug appears. Ends up being just one more thing for me to take, for me to do. . . I'm tired of all of it all, tired of fighting . . . please, back off, just a bit . . ."

His words made me stop and think, but not before I said, "It's all I've done for you, for the past 17 months—I don't know how to do anything else, except fight for you . . . that mind-shift, from fighting to the "letting go" of hospice isn't an easy transition for me . . . I'm sorry, but I still think you're so worth fighting for . . ." and had to stop because I started crying for what I think was the eighth time that day. And it was only 10 a.m. . . .

Not really sure what's going on, if it's some kind of infection that just needs to run its course, or if something more is going on, if the disease is progressing, taking a deeper hold . . . I remind myself, all day, every day, that no one knows anything for sure—that's been proven time and time again over the past year and a half, and we have to take this step by step, day by day, the way we have been, all along . . . Penny asked if we should take him in, to be seen by someone. Bob refused. "For what?" he asked. Good question . . . Just tonight, Bob announced to us, after suddenly waking from a fitful nap in the recliner, "I think I'm going to feel better tomorrow." We all looked at him. He looked back at us. "I just decided that tomorrow, I'm going to feel better." I know better, after all these years, than to disagree with the man . . . will keep you all posted. Love you all so much . . .

Another quick favor of our faithful followers, if I may . . . a dear friend of mine lost her precious son yesterday. . . she's an amazing woman, her husband an awesome guy—they did so much for usat the benefit, I can't even tell you how grateful we are to have them in our lives. . . I never had the privilege to meet their son, Sam, their Peanut, but I know he was the light of their lives . . . if you could offer up a little prayer, a kind word or whatever is in your heart, to Lisa, Dale and their beloved Sam, tonight, I'd so appreciate it. And I'm sure they would, too . . .

LOVE! to all! xxoo j

12:26 a.m., but it's really only 11:26 p.m., so I shouldn't be tired, yet . . .

Once again, sorry for the lapse of time between posts . . . I did have a nice big ol' post written, complete with video of me wrapping Bob's leg for your viewing pleasure—Bob doing the "videography" using my phone—but the effin' thing wouldn't upload (I dunno, maybe the video file was too big for Blogger, maybe my phone didn't "communicate" well with my computer, who knows), so I deleted the video and just carried on. and on. and on. . .

Overall, things are pretty quiet up on Walton's Mountain. We're hangin' tough out here, things remain status quo, no major changes with Bob other than some random days of crazy-intense nerve pain episodes. Thankfully, they're not a constant deal, but plenty frequent enough and when they happen, the pain is so intense that at times, I swear I can feel it shoot across the room and innervate my own body . . . we were trying to figure out if something is triggering the episodes, but really can't pinpoint anything specific; they're quite random. We're working with Bob's hospice nurse to try some med changes and other things and hopefully get some positive results, soon. My sis, Gretch, has done some healing touch sessions with Bob in the past, which really help to calm and relax him, so we may see if she can come again (maybe once a week or so) as a complementary, holistic approach in addition to meds . . .

Despite (in spite?) of the pain Bob's dealing with, we've been trying to get out and about a few times this week . . . Penny and Jim were up last weekend, just for a day—went to Nacho Mama'sin Stillwater for lunch on Sunday (note about that cute li'l hole in the wall, which it literally is: you could share an entree with someone and still have leftovers for another meal! Good food, but ridiculously huge portions! Not that I'm complaining, because the leftovers were dang tasty the 2nd day, too, but still, had we known . . . ). Penny and Jim came up again today, we crossed the river to San Pedro's in Hudson for a late lunch. Again, superb grub (and this time, Bob and I shared an appetizer and an entree—smart move on our part. As of 11:45 tonight, still feeling the stuffed . . .) and divine dessert. Highly recommend the joint, and you must try the habanero chocolate cake . . . my sis, Jill, and her kids popped out for a visit this afternoon, as well, so was a busy day. We've been trying to plan a sleepover with her and the kidlets, as Amelia is itching to show Bob her new owl pj's (her original idea, when she saw them in the store, was to buy them for Bob, but alas, they only came in kid sizes . . . ), but Jill's family has been passing around a late-winter bug among each other for weeks now, and are only just beginning to feel better. Maybe next weekend . . .

We are so looking forward to the promise of warmer weather that is looming in the not-so-distant forecast, hopefully to melt the fortress of snow encapsulating Wrenwood, might even be able to see our neighbor's house across the street for the first time in months. . .

Sorry for rambling along here. . . I always feel that I could have so much more to say, but I'm kind of done philosophizing on our whole deal for a while, maybe forever, and just need to stick the mundane, the benign—I mean I could restart the thread on the lines of, "So about this horrific earthquake and tsunamis in Japan . . ." which weighs heavily on my mind and in my heart these days, and how it relates (or doesn't) to "God never gives you any more than you can handle . . ." or how could I possibly pray for a miracle to spare my husband when 10,000 people, most of them very likely wonderful human beings, have just been wiped from existence . . . but I've kind of exhausted the argument that people are handed crap all the time, every day, that they can't handle . . .

Perhaps some day, after a few glasses (i.e., bottle) of wine/liquid courage to back me, I'll take on that challenge again, but these days, I've lost desire and interest in trying/wanting to share, explain, defend—whatever—the intricacies of the good and bad, the holy and evil, the beautiful and ugly of life these days. It's deep, it's wide, covers so much ground, too many emotions, layers upon layers deeper than deep that defy and refute neat, tidy, shallow explanations, trite cliches or hollow platitudes . . . yet, at the same time really, truly, is so very simple, which makes it so hard to explain and/or understand. That life simply happens, and we derive purpose and meaning through our own deeply personal reactions and choices, not by what someone else says we should do/say/think . . . And since I told my mom I'd try (didn't promise . . . ;) and avoid the phrase "bitch slap" in the blog from now on, I'll work hard on biting my tongue and just keepin' it simple. And sometimes downright stupid, I see, now that I'm re-reading this . . .

As I've said numerous times, our days are quiet, uneventful, blessedly mellow. I keep myself busy helping Bob with his stuff, as well as with little projects around the house: just installed new shower heads in both showers, a new smoke alarm in the living room, changed furnace filters (hey, guess what? They really do need to be changed every month!), have ongoing projects of cleaning/consolidating our offices, purging closets . . . the last of the snow slid off our roof the other day, which gave me the additional despicable task of clearing the remnants of that hot, sloppy mess. Top that off with shoveling here and there thanks to those freakin' nuisance snowfalls of 1-2 inches now and again, and our days fly by . . . Bob's been a big help, folding laundry, rolling leg wraps, tormenting (distracting) Rocco so I can get other things done. . . still cooking a lot, in spite of going out for dinner once or twice a week: honey ginger shrimp with cilantro-lime rice last night; beef stroganoff with shittake and crimini mushrooms over brown rice, with steamed asparagus . . . just made the tastiest and dare I say--healthy?!--whole wheat-oatmeal-chocolate chip-almond cookies (yes, all in one cookie!) yesterday. All natural ingredients, nothing processed or refined, organic if possible. I've been knockin' back 3-4 cookies, per meal. Like Charley Sheen, I have one speed (as far as cookies go) and that's go! It's how I roll, peeps. . . (I can't believe I just worked Charlie Sheen into the blog. I have been watching waaaaaaaaaaaaaaay too much t.v. . . O Spring, you cannot come soon enough . . .)

With some nicer weather finally peeking its head around the corner now and again, we also trying to get out and about for other little outings a tad more frequently, even if it's just to Target or the grocery store for a few things. It's nice to get out, not only to leave the tired ol' confines of the house and into fresh air and new surroundings, but also so we can get more practice in the fine art of maneuvering a walker and/or crutches and/or wheelchair through what we're discovering is the very un-handicap accessible world in which we live. . . holy shit, Batman, a huge eye-opening experience. . .

A note to Barnes and Nobel in Woodbury: you have a million handicap parking spots in your parking lot, yet the only way into the joint is through a set of humongous, solid wood, heavy-as-unholy-hell doors that belong on a castle, not a retail store, with no magic button to make them open???!!!! WTF, seriously?!? Do you possess a perverse sense of humor?? If someone with a walker or crutches, or even a parent with a kid in a stroller happened upon your store and wished to enter, they'd have to stand outside in the freakin' elements and wait for someone to come along to open the door for them!

AND on the flip side of that, a loud and proud shout-out to the new Target Mega-Super-Ultra-lopolis in Woodbury: not only do you have a million handicap parking spaces, but you also have magic doors that open for everyone, regardless of ability, race, gender, sexual orientation or anything! AND a huge number of scooter/basket-combo 4-wheeler thingies! They were immensely helpful (and fun! It was evident Bob really enjoyed zippin' around corners on two wheels, nearly taking out other shoppers . . . ) as we meandered (well, I meandered, Bob zipped . . .) through the acres upon acres of retail aisles, purchasing things we really didn't need amidst the things we did . . . Target is the MasterMind behind the concept: "Come In for Batteries, Leave with a Cartload of Shit You Don't Really Need," of which I'm a faithful follower. Though I must admit, this past year, I've reigned that in substantially, just one of my many money-saving principles put into practice. . . we're trying our damnedest to become more a part of "the real world" again, though for endless reasons, easier said than done. Handicapped or not, this winter has been a tough one on everyone, and I'm sure many have chosen to hibernate rather than be out and about, if given a choice.

Sooooooo . . . our other li'l project (that's turning out to be more work than I realized) has been working on putting together an Etsy.com site for Bob's photography. (For those who aren't familiar with it, Etsy is "a social commerce website focusing on handmade and vintage items," their credo being, "Buy, Sell and Live Handmade.") I was so astounded with the overwhelming response to Bob's photos at the benefit, that we decided to make them available for anyone and everyone to purchase. We'll start with card sets, and at some point, hope to have canvas prints available. Etsy is free, and easy way (relatively) to get Bob's photography "out there" and into an online store, and available to a wide audience. My goal is to have the site up and at 'em sometime this week, and I will update the blog with all necessary details when we're ready. Please have patience with me, as it's more time consuming than I thought, main reason being having to go through the literally thousands of images of Bob's and trying to create "collections" of cards. . . I will print the first ones out myself, but may end up enlisting in the help of a photo developer, to make things quicker. . .

We do the name of the online "store" chosen: Prairie Smoke Gallery. The prairie smoke is one of Bob's favorite native wildflowers—he's taken dozens of images of the ethereal, feathery flower (we have a large canvas print of the wildflower above the fireplace in the basement, of the photo at the top of this entry). The name prairie smoke, for me, is also somewhat of a metaphor for our life this past year and a half, conjuring images of raging prairie fires, fraught with violent devastation, tearing across the landscape . . . but when the fire burns out and the smoke clears, amidst the charred remains, something amazing occurs—the prairie begins its painstaking rejuvenation process. . . plant life pushes up through the blackened ground, animals return, eventually, the prairie recovers, stronger and more vibrant than before. . .

It is my hope that we can create something beautiful from the wreckage that has swept across our lives this past year and a half, if in no other way than to bring joy to other's lives by sharing his breathtaking images . . . but, I'd like for it to be even deeper than that; just how, I'm not entirely sure. I've got some pretty strong ideas, but the fine details are what we're still pondering. Part of my feels so strongly that not enough is being done to make childhood cancer survivors (and the general medical community, as well) aware of the potential yet very real horrors that lay in their futures, and that perhaps proactive measures could be taken to catch these potential problems earlier . . . I know I'm up against a huge looming moster with that task, as I've seen time and time and time again that our medical system is not a proactive one, and it's my conspiracy theory that it never will be, because it's just not profitable. . . Bob's insurance company has paid out over two million dollars to the U in just one year. . .two fucking million dollars in endless reactive care . . .

Another part of me is so deeply grateful for the love, support and generosity that has been been bestowed upon us throughout the past year and a half, and I wish to somehow pay it forward . . . the opportunity for me, for now, to continue to be at home full time and care for Bob and just have him here with me, is at the same time the most difficult yet the most rewarding place I've ever been in life, an honor and a privilege that, without the immense support of friends, family and even complete strangers, simply wouldn't be possible . . . in these difficult times, it's underscores a simple, simple life lesson, that really, the only reason we're here on earth is to be kind to each other, to take care of one other. We can't stop horrible things from happening, to us, to those we love, even to those we don't know . . . But we can help each other through it all . . . it's about all we can do . . . anyhow, stay tuned for more about Prairie Smoke Gallery. . . so tired. So time for bed . . . xxooxx!

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