Friday, January 28, 2011

Bob's Benefit Update

I've been asked to give a quick update on the developments of Bob's benefit. I'm trying hard to stay "out of the loop" because I really don't want to know about the nitty gritty details, but when my two sisters, mom and in-laws are part of the planning committee, I can't help but hear tidbits (or more . . .) now and again. And, it seems that perhaps more people follow the blog than any other "Bob Venue," so the hope is that this information will reach the most people this way.

Okay, so the nitty gritty is:
Event is Sunday, February 13, at Throwbacks Bar and Grill in Woodbury, from 1 - 7 pm,
Three bands play throughout the event
Kid-friendly! Bring the fam!
Spaghetti dinner served all day (buffet-style)
$20/person; $40/family of 3-4; 10$/kids 10-17; kids under 10 free

Auction goes until 5:30 p.m., after which all bidding will cease, winners tallied and announced by 6:30 p.m.

It sounds like it's going to be an amazing event. My ol' college advisor was right—it's not what you know, it's who you know . . . I'm blown away by the infinite generosity bestowed upon us—by the event planners, the venue staff, the silent auction and other generous donations that are streaming in, from so many sources . . .

Gorgeous hand-made quilts, stunning pieces of woodwork (made by Bob's mom and dad, respectively), fantabulous gift baskets of amazing varieties (wine, beer, bird feeders, to list but a few), an amazing sushi package, deluxe poker set, gift certificates for top-quality Valspar paint (which was just featured in Consumer Reports, incidentally. . .), baby items, countless gift certificates from endless eateries and retail shops, golf packages, jewelry, home items, hand-crafted art pieces, services (massage, salon, photography, guided goose hunting, even!), gourmet coffee, a few of Bob's 16 x 20 canvas prints will also be up for auction . . . I know I'm barely scratching the proverbial surface . . .

The event is features not one, but three bands . . . a friend of a friend is generously donating her artistic talents doing face-painting for kids (and kids at heart) . . . donations for the silent auction are pouring in, and I'm astounded, absolutely humbled by the variety, quality and sheer numbers of items being offered for auction, the outpouring of people coming together to make this happen . . . I've said numerous times that no money will be raised at this event, because I personally will be bidding on everything . . .

Just learned that there will also be a freakin' BAKE SALE at the benefit—this cracks me up to no end!!! I LOVE it! I, personally, was going to offer to bake a few things, then remembered the last time I baked—for a cookie exchange a few years ago with some girlfriends—the "truffles" I made ended up looking like little turds, and if that wasn't humiliating enough, I also forgot to tell everyone to refrigerate them, as cream cheese was one of the ingredients. Well, a few weeks later, the phone calls started: "What the hell! Are you trying to kill us??!!??" and "I opened your festive canister and found a HUGE PILE OF GREEN MOLD, Jen!!!!!!!!!" and variations on the theme . . . okay, so maybe I won't contribute to the bake sale. . .

My sister, Jill, may be doing a guest blog appearance in the next day or so, to solidify, clarify, finalize the details of the event, but I just wanted to do a preliminary update. . . As amazed, astounded, humbled, speechless, grateful, moved and all as I am about the event and all the hard work, generosity, love and support that is going into this, I say it again, I'd give it all back, a million times over, if only . . .


So, "what about Bob?" you ask? Well, for starters, he's really looking forward to making an appearance at the benefit. All depends on how he's feeling, of course, but if things stay on the course they have been, be prepared to take a number to get some face-time with the man . . .

As of tomorrow, we've logged four freakin' weeks of blissfully uneventful at home . . . {{{ . . . huge, contented sigh . . .}}} Mostly pretty good days, though Bob does have some new pain stuff flaring up in his right leg; could be the lasting effects of the surgery, could be from the blood clot yet, could be that the tumor is growing and pressing on new nerves. . . a few nights ago, it got so bad, he didn't get any sleep, but wouldn't let me call hospice 24 hour line. . . I truly don't think he's playing hero; rather, I just think it's all he's known for over a year, putting up with the pain, and unfortunately has become an expert at "dealing" with it . . . after talking to his nurse yesterday, I think she drove the point home that that is what hospice is here for—comfort, pain management . . . we came up with a few potential solutions—adjust his meds a bit, take some sooner than later to try to stay ahead of it (seems to flare up in the evening), should it happen again. Since her visit, he's had a few days of good, restful sleep, so we'll just be vigilant in keeping it in check . . .

We had a new lift recliner delivered last night, part of the hospice full meal deal: comfort, pain management, quality of life. . . it's a big, brown "pleather" (Naugahyde? Plain ol' vinyl? . . . hmmm. . . ) chair with electric controls that not only reclines, but also slowly, ever-so-gently lifts one from a sitting to a standing position (though the picture on the website suggests it just might catapult one across the living room). It doesn't clash too terribly with the decor, so I'll allow it to remain (more so, because I "test drove" it last night and found it to be quite comfy. Could get ugly in here, fighting over the Laz-E-Dude chair . . .)

I don't know if I mentioned the amazing lymphedema therapist, Laura, who has been working with Bob for the past few weeks; if not, a huge round of applause and endless thanks are in order. She is nothing short of a miracle worker, and I truly, honestly, cross-my-heart-hope-to-die, feel that she is one of the few caregivers, besides Bob's cardiologist and primary care doc, that I can think of, in the entire past year, who has truly made a remarkable difference in Bob's quality of life. Three weeks ago, Bob's right leg was easily three times the size of his left, so swollen with fluid, so heavy and awkward for him to lug around—the swelling from the blood clot and the build-up of lymph fluid—added nearly twenty extra pounds of fluid. . . even I struggled to help him to bed, having to lift this fluid-logged limb into bed for him.

"Technically," lymphedema therapy isn't covered by hospice, as it's considered an on-going rehab-type of therapy, which really isn't what hospice is about. . . but I argued the point that it's made immense leaps in Bob's quality of life and personal comfort, as well as safety—he's more mobile, which means he is getting out more—we've logged THREE outings in the past month, btw, peeps! We made it to Punch pizza last week with my sisters, one of my bro-in-laws and mom—the best 'za I've had in a long time! Then out to the Bungalow supper club—not kidding, an honest-to-god ol' skook supper club, complete with dark wood, an endless display of hanging Tiffany lights (authentic, I cannot say . . .), with Bob's parents last weekend. Great comfort food, cozy ambiance, good times . . . Anyhow, back to the lympedema therapy— I recall Bob saying, months ago, back in Bethesda when the immense swelling first occurred, "If only I didn't have to deal with this heavy, bloated leg, everything would be so much easier . . . " They had started wrapping his leg back then, but it's now very evident that their therapists didn't have near the knowledge and expertise Laura has with the treatment. It's made such a difference in all that he does—he moves about the house much easier (and safer, too), he can get in and out of bed on his own, gets in and out of the car on his own. . . I tried taking pictures of his humungo right leg compared to his other scrawny chicken leg a while back, but photos just didn't do the situation justice, so you'll just have to take my word for it . . .

We weighed him the other day, and he's easily lost maybe 15 lbs. since Laura began working with him. She taught me how to wrap his leg, so that on the days she doesn't come, we can keep up with the progress. It's quite the labor-intensive treatment, requiring very in-depth training and knowledge of the very detailed philosophy behind it. Because I obviously don't have that, my wrapping is really simply to help maintain all her hard work (and to my amazement, it's working!). . . . He's moving around so much better—even getting down to his office at least every other day. He "graduated" to a compression stocking at the end of last week, which makes his mobility even that much better (the wrap is quite confining and doesn't allow for a great range of motion) so the routine is: wearing this insanely tight groin-high stocking all day, and wrapping his leg at night, to keep the swelling under control. So far, so good. . .

Most nights, he's sleeping well, appetite still going strong for the most part . . .

Anyhow, eyes are tired, bed is calling, Rocco's looking at me like, "C'mon, Jen, let's hit the hay, dammit!" so that's all for now. Expect a neater, more detailed entry from my sister in the next few days, with more info about Bob's benefit event. . . love to all. . . xxooxxoo j

Wednesday, January 26, 2011

The "H" word . . .


Bob and Rocco, sharing a meal . . .

As of last Friday, we've officially made the transition from Fairview's TLC program to hospice. {{{deep breath}}} There. I said it. The "h" word. A word that heaves and bends under the weight of so much emotion . . . the main reason we made the transition (besides the obvious) is that, after talking to the social worker last week and telling her how completely and utter overwhelmed we felt with the number of home visits we were getting, hospice seems more appropriate. First of all, we aren't seeking any more treatments, so having so many people checking in on Bob is overkill. Seriously, some days, we had three or more visits from nurses/therapists/social workers/whatevers coming in and out of the joint, I was ready to scream. Felt like a new mother with a baby—forget about showers, putting on real clothes, eating a real meal, not to mention grocery shopping or other errands . . . not that they all weren't incredibly nice and helpful, just that it got to be so disruptive and more than a tad unnerving, having so many strangers in and out of here. . .

Maybe a quick explanation is in order before I continue: Fairview has three levels of home care. The first is your basic home health care, the goals being to help the patient achieve as much independence as possible, given the specific circumstances. Many medical professionals are likely involved in achieving this independence, and curative/ongoing treatments are part of the plan (chemo, dialysis, rehab, etc.), though terminal illness isn't really a factor. The TLC program is a "bridge" between home health care and hospice, providing a little bit of each, some treatments may still be pursued, but mostly focusing on palliative care/comfort (these patients may be terminally ill, but there is no "timeline" per se on the prognosis). Hospice focuses on quality of life, comfort, pain management, but there is no real focus on 'getting better,' or on curative treatments. Time frame is usually six months or less . . .

Anyhow, all that's heavy stuff that's much too much for this blog any more . . . on Sunday, we
got Bob out for breakfast, to the Woodbury Cafe, with his mom and dad. Get this: it was the first time in over a year, peeps that Bob's done anything beyond the confines of hospital walls or our house. Ruminate that one for a moment or two, if you will . . . all went pretty well, though as Bob said, you don't realize how handicap in-accessible the world is until you're handicapped. We got to the restaurant, found no handicap parking spaces available, so Jim let us off at the door, where Bob had to maneuver across the slippery, snow-packed road, make his way between ice chunks, up the curb, onto the icy sidewalk and into the building. With a walker and a bum leg encased in an ortho brace and heavy Darco boot, to boot . . .

In spite of the obstacle course, Bob expertly dodged and maneuvered the route, as though he'd done it countless times already. I guess I shouldn't have expected anything less. . . After a short wait, we were ushered to a booth and enjoyed a wonderful breakfast at the cafe. I believe the same people who own the Louisiana Cafe in St. Paul run this same operation, and we all highly recommend it. All four of us had a wonderful meal, great portions, reasonably priced, and pleasant atmosphere/service. They're only open for breakfast and lunch, so get there early.

Tomorrow (Thursday), we're going to try to venture out to meet my sisters and my mom for a late lunch. Coincides with a house showing, so it should work out just fine . . . maybe head Punch pizza, maybe a burger at the Groveland Tap. . . then again, knowing Bob, it could very well be White Castle, god help us all . . .

Life in the "h" lane is slow, for the most part, uneventful and despite the many heavy emotions, thoughts, feelings and all, as peaceful as it has been all year. . . for that, ever so grateful, if not heavy hearted . . .



Wednesday, January 19, 2011

(Posting of this pic is long overdue—it was taken during Bob's last hospital stay, a few weeks ago. Bob and our newest nephew, li'l Otto. Jill, Jade and Amelia's li'l boy . . . Bob's not normally prone to kissing babies, which is why I just love this pic, all the more . . .)

Sorry it's been a while since I last posted . . . mostly because all's quiet on the eastern front and there's not a lot to report, which is a blessing we're embracing fully, believe you me . . . It's been 2 whole weeks since Bob was last discharged after his GI bleed and he's holding steady. Not one ER run, or hospital stay—heck, not even a doctor's visit in this time. For the most part, since he's been home, Bob has been sleeping well, eating well, and moving about fairly well (a relative phrase in our world), just kind of tired throughout the day, low energy levels. . .

It's been such a long time since we've had a stretch where there hasn't been some crisis or another rear up, that I guess we're just basking in the quiet of it all, in spite of living in this bizarre in-between world . . . to interrupt the gentle flow that has become our daily routine up here on Walton's Mountain with something as a mundane blog entry seems kind of like a startling, unnecessary interruption. So selfish, I know, especially considering all you wonderful people who have been steadily holding us dear to your hearts for so long. . . Because of that, I do feel I owe at least a quickie here, to all who have been endless in your love and support in following Bob's story . . . right now, Bob's sleeping soundly, I'm still awake, as usual . . . I'll try to make this brief. (Yeah, I know. Whatev, peeps.)

The whole point of this blog has experienced a seismic shift in focus the past several weeks. Plate tectonics hard at work. . . when all this began, over a year ago, it was simply meant as a way to keep friends and family filled in on what's going on with Bob, a place to let off steam, to process events . . . but in the past months (or so, give or take), we've been violently shaken off our foundation, literally and figuratively . . . making time and effort to write, as a result, has become a daunting endeavor. Every time I sit down to try to write a "quick" update, I end up simply walking away from my laptop. "Quick" doesn't do it justice, yet anything longer—I fear I won't be able to shut up . . .

It's been months (over a year, but who's counting . . .) since I've had this kind of alone-time with Bob. Just the two of us, in our own little home—he, clear of mind and as close to my "old" Bob as he's been in far too long. Not overly-drugged up on narcotics, no crises, no endless back-and-forth hospital trips, no constant stream of doctor appointments or ER trips . . . as close to bliss as we can be, in the midst of the hell we've been through, but still as far from bliss as we could possibly be, if that is at all possible. Tell me to shut the hell up at any time . . . Mostly, we're just "hanging out" at home, not doing a whole lot of anything (it's cold as all get out—who's doing anything but trying desperately to keep warm at the moment, is what I want to know!?!!). It's almost sacrilege, to spare even a second writing about, to share with anyone the mundane yet insanely intense world that has become our lives . . . this "in-between world" in which we're living is like nothing I could ever describe or hope anyone to understand, as such, to try to write about it does it huge injustice, to the point of being a big waste of time, as my grasp of my native language desperately fails, hence, the lack of posts lately . . .

But, at the same time, I want to sit here and write till my fingers bleed, till my eyes are bleary with tears and I fall onto my laptop with exhaustion, till I make everyone understand, myself included, what this time in our lives means—what this in-between world is like, what it means and what it does not. And I know there are not enough days or words or emotions available, in a lifetime, to accomplish this lofty feat. . .

There are times, countless snippets throughout a day, when it feels as though life is almost back to what our old life was like—Bob will crack a crude joke (okay, truth be told: it's likely moi cracking the crude joke, with Bob rolling his eyes. But sometimes he is the crude one and when it happens, it's a good one . . .) or, I'll be cooking like a madwoman in the kitchen while Bob rests on the couch (as if that ever happened before. . .more like the reverse: Bob cooking, I'm lounging—I said "almost back to the old life" didn't I??!!). . . all those lovely scenes, interspersed with countless events that harshly remind us that we're so very far from the "old" life we used to live, not even close to a shadow of it. Pill bottles lined up on the dining table. Rubbermaid tote next to the bed, housing bandages and other wound care items. A walker parked next to the sofa. The shower chair sitting in the corner of our bathroom . . . all day, every day, yanked back and forth, back and forth, between the worlds of "used to be" and "how things are now . . " and how to make the two blend, play well together, an exhausting, never-ending feat. . .

We're trying to live with—or defying, or fighting, or come to terms with, depending on the day, the minute, the second, the point of view—what's essentially a death sentence hanging above Bob's head, handed to him from his oncologist, and all that's bundled in with that, and how to move forward. Believe me, there's nothing beautiful or precious or romantic in it any of it, at all, and it's something that never takes a break, never lets up . . . with the effort that goes into trying to live life as "normally" as one can, without thinking about all that hangs heavy on that, is a super-human act, so far, beyond anything I'm capable of . . . It's only precious or sacred or dear to an outsider, who may romanticize the scenario that's going on behind closed doors. . . how do you romanticize a life ripped right out from under your feet, never to return, all the things you shoulda woulda coulda, done . . . never will happen . . . how do you romanticize feeling completely normal—that for a split nanosecond, our old life is back!—only to be abruptly, harshly, sometimes violently reminded again and again, that this is not our old life and will never be. Ever.

I have such grandiose ideas of getting Bob out of the house, to go grocery shopping with me, maybe take in a movie one day, or visit his old colleagues. "We'll make it work, hon! I've got it all figured out!" I say, "It'll be so good for your spirits, to get out of the house, to see someone other than my boring ol' mug!" Then, the day begins, and I am again reminded how much of an effort everything is for Bob, I see how very tired he gets, quickly, how he falls asleep sitting up on the sofa in front of a rerun of American Pickers playing softly from the tv. . . I see how much energy it takes simply to get from sofa to bathroom and back again. I see his appetite waxing and waning . . . he tells me he fell on the deck as he shuffled his way from the house to the Jeep when we were leaving for a house showing. I didn't even see it happen; I had run back into the house, for just a minute or two, when he fell. Thankfully, he didn't hurt himself, but said he felt like a helpless, struggling to get back on his feet . . . this getting out and embracing "The Wide Wonderful World!" isn't as easy as my little fantasies want it to be. . .

House is still for sale; we're averaging at least one showing a week or so—had three over the weekend. The upside to having the house for sale is that it forces me to keep it clean. The downside to having the house for sale is that it forces me to keep it clean. . . that whole thing—selling the house—comes with a whole bag of mixed feelings and issues, as well . . . to me, it's just a thing. It's not a life, a living being, but it has been Bob's haven, his escape, his "Wrenwood," for six years . . . it's too much house and property for me to maintain alone, and despite the generous offers and efforts of our beautiful neighbors, I can't expect that to go on indefinitely, nor do I want it to. Our reality is that we can't afford the joint any longer, and I want to get out while the gettin's good, to simplify our lives, to bring us close to doctors, caregivers, hospitals . . .

I've told our realtor's office that we need at least a 24 hour notice before showings, but I don't want to miss an opportunity, so there have been times that we've had to scramble, to skedaddle with just a few hours' notice . . . so far, the only outings Bob's had since discharge are when we need to high-tail it out of the joint for a showing. I just bought a portable wheelchair on e-bay, which should arrive within the week. With that, it'll be much easier to go beyond the confines of the Jeep, to the grocery or Target shopping with Bob. . . every day, every week, presents a new challenge that forces us to work around, figure out. . .

My mom and baby sis, Gretch, surprised us with bringing brunch to us Sunday. What an awesome meal, and wonderful guests to accompany it—baby quiches from Trader Jose's, fresh fruit, a lovely spinach salad . . . (Subtext: come one, come all, to visit! With tasty, nourishing grub! ;) In the midst of cleaning up after the deelish meal, my mom opened a little drawer in the kitchen and let out a little gasp, her face frozen in horror. She turned to me, carefully choosing her words: "You might not want to open that drawer, Jen. . ." Of course I did, and defying her warning, I yanked the drawer open and found myself staring at scatterings of mouse shit, co-mingling with my rolling pin, mixer-beaters, cookie cutters . . . I could feel my stomach lurching upward toward my throat . . .

"I hate to tell you this, but the drawer over there also has some in it . . . " Mom said, pointing to the little drawer on the other side of the sink. "I was just putting things away, and when I opened the drawers, I saw it . . ."

Probably didn't help that Bob and I had watched a show called "Infested," on A&E or History channel or wherever—just the night before, an entire series devoted to horrific infestations: cockroaches, ants, spiders. Just adds to my Worstcasescenario Syndrome . . . as soon as Mom and Gretch left, I went t' town, pulling out every drawer, opening every cupboard in the kitchen and scrubbed them down, which lead to ripping out all the old Contact paper in each and every drawer and cabinet and replacing it with new (I had a few rolls on hand for this project, which should have been done when we had first put the house up for sale last year), which lead to grabbing a paint can to "touch up" a "few spots" on the cabinets, which lead to painting the entire interiors of all the cabinets (something I'd neglected to do over 4 years ago when I had painted the exteriors), which lead to organizing the spice rack in alphabetical order no less, which lead to purging anything and everything we haven't used in over a year, which lead to filling three bags of grub (GOOD grub, peeps! NOT mouse-fecal-infected or outdated grub!!!) which were donated to our local food shelf . . . if one didn't know me better, one would have thought this might be a meth-cocaine-alcohol-fueled frenzy . . . nope. Just an insane aversion to rodent-fecal-matter-induced-disease . . . and maybe a few other personal crises, to boot . . .

It was nearly 2 a.m. before I finally collapsed into bed, only to crawl back out again the next morning to finish the job. I was obsessed. Possessed. Whatever. I had seen evidence of mice under the sink this winter, had set traps and even caught a few, which I thought had solved the problem—I hope the rodent shit in the drawers is simply remnants of the recently deceased—the drawers in which the mouse poo was found are two drawers that are rarely used, except to stash quirky gadgets. They're very narrow and not practical for much else, so I'm hope, hope, hoping the problem is solved. I set a few more traps, for good measure. . . if I weren't already insane, this episode would definitely be the one to push me over the edge . . .

On a related note (insanity, that is), we've had several "nuisance" snowfalls lately—ones that don't warrant firing up the snowblower or calling in the plows, but enough that I do have to go out and shovel the walks and driveway, and clear the decks, for everyone's safety as well as for the aesthetics of the joint. Can't have the place looking abandoned if we're trying to sell it, fer cripes sakes, so it seems almost daily, I'm out shoveling the drive, the sidewalks, the deck . . .

Have had a steady stream of nurses, therapists, etc. visiting Bob—a regular nurse who pops in once a week, just to see how things are going; a lymphedema therapist, who started working on getting the swelling down in his right leg (due to the clot, as well as damage to lymph nodes from the surgery). BTW, this woman is working wonders! I spotted Bob's right kneecap last night—first time since November! And the beauty of it is that it involves no drugs; just a somewhat labor-intensive system of wrapping his legs with various ace-type bandages, to employ pressure which pushes the lymphatic fluid back up into the body, to be recycled through the circulatory system, then through the kidneys and out the bod. Already, his right leg has considerably decreased in size. A wound nurse also make semi-regular visits, as well as a social worker, and clergy, if we wish. All part of the full meal deal. . .

But after a couple weeks of all this, I finally had enough today, and cried, "UNCLE!!!" Truly, we considered installing a revolving door on the house to accommodate all the comings and goings of health care professionals who are part of the package deal of Fairview's TLC program (a "bridge" between home health care and hospice). Today, after talking to a social worker who had come for her first visit us and after patiently hearing our experiences of the past few weeks, suggested that perhaps all-out hospice care is the way to go. That way, we have control of who comes to visit and when, based on our needs, not what insurance/home-care dictates. . . hospice is a loaded word, with loaded connotations best left for another time, after we know more and that alone may be the reason we've skirted the issue (and please, don't respond with the stories of how "my uncle was on hospice, but after six months went off, because his cancer went into remission!" or whatever because we know all that, we've heard all that, we're more than aware. If YOU personally have had to come to grips with a "hospice" edict on your life, then come talk to me. Until then: "Pie hole. Shut it. Please.") In spite of all the emotional shit that comes with the deal, it sounds like it will give us more of the peace and quiet we're so yearning for at this time, so we'll see . .

I know this is all rather disjointed and probably hard to follow, but it's the best I can come up with right now. Love to all . . .

xxoo j



Saturday, January 8, 2011

Silent nights, holy nights. . .

Saturday evening, January 9, 2011 . . .
Quiet days (and nights) at home. . . so grateful for them, ever so grateful, for each and every one . . . Bob's home, I'm back in the kitchen—strangers in strange lands—and lovin' every minute of it. I went grocery shopping Friday, fridge is finally full of good food again (I have a tendency to forgo the grocery store when Bob's not here. . . lots of bowls of cereal are consumed while he's gone . . .). Back to chopping, slicing, dicing, cutting a finger now and then, blending, mixing, swearing like a trucker when I drop the spatula for the 18th time, splattering my concoction across the kitchen floor (to the doggies' complete and utter joy). . . believe it or not, this is the one thing that gives me just a little bit of control (even though I am a tad out of control in the kitchen), a little bit of power in this big ugly thing. . . to keep fighting with Bob, he best way I know how, which is being by his side, taking care of him, whether it's cooking, helping him with showers, medications, running errands, home projects (finally fixed that pesky basement patio door latch . . .tomorrow, dog poop patrol), tending the doggies. . . keeps me busy and out of Bob's face, for a while, anyhow . . .

Trying to get back into the swing of creating delicious, nourishing meals for Bob, getting a routine down here at home and working up to getting Bob out in the world, as tolerated. Thursday night's menu was chicken enchiladas, with juicy organic, free-range chicken and black beans stuffed into sprouted corn tortillas, covered in tomatillo sauce and sprinkled with an organic Mexican cheese blend. . . Saturday, cauliflower soup (with carrots, broccoli, onion, garlic, all pureed, then blended with rice milk, home-made chicken stock, a generous handful of cheddar cheese, tumeric, ground black pepper, sea salt . . .) We split a chicken, avocado and tomato sandwich on grainy, sprouted bread and cottage cheese sprinkled with flax seedb for lunch . . . snack was a 1/2 granny smith and p.b. . . .(pic to the left is Bob and his new BFF, Rocco. Rocco is so sweet and loving with Bob, surprisingly, given how much Bob hasn't been around for the past year)

Bob's appetite has once again rebounded and almost anything is a go, so I'm experimenting with all kinds of stuff—scouting out the local co-ops, Trader Joe's, even Cub, for the best quality food I can find. Priorities, peeps . . . good food will not hurt Bob (or me, for that matter) and may very well help, in terms of improving his quality of life, giving him more energy, strength and stamina. In addition to the physical attributes, who hasn't felt the pure mental—spiritual, even—qualities of good food brings to our lives . . . "food as medicine," once again has become my mantra . . . out with the processed, refined, in with fresh, natural, organic when available. . . did a tasty juice this morning (now it's Sunday)—handfuls of spinach, lemon, lime, clementine, carrot, 1/2 green apple and 1/2 pear grinding through my juicer to produce a gloriously tangy, emerald green liquid that I thoroughly enjoyed; Bob choked down a third of a glass (I know our pal Paulie would have chugged the whole glass down and enjoyed it, too!) . . . humoring his nutball wife is one of Bob's many endearing qualities . . .

Bob's also been sleeping so soundly at night again. Granted, it's only been 2 nights at home so
far, but almost every night at the hospital the past few weeks was a bad night's rest for Bob . . . I can hear him softly snoring now, as I type . . .

It's quiet around here for the most part, but somehow the time flies by. Usually up by 6:30, to help Bob to the bathroom and get dressed (we're trying to fit a shower in every other day), a.m. meds, breakfast, dressing change, then a little R&R—I might run an errand or two while Bob rests (and yes, I call him relentlessly, to his utter annoyance. He doesn't say so, but I can hear it in his voice when he answers the phone . . .for the sixth time in an hour . . .), or we might have a visit from a home health nurse—then lunch, afternoon meds, maybe try to do a little PT or OT exercises, rest, and before we know it, we're eating dinner, cleaning up, another dressing change, p.m. meds and getting ready for bed. No set bedtime, just whenever he starts feeling the lids drooping. Had a random visitor pop in Friday night—a colleague of Bob's stopped by on his way home from work, to drop off a 4-pack of Surly Abrasive Ale. I had to try one, of course. Heavy on the hop-side. Just my style. Was good to see Bill, hear him and Bob "talk shop. . ."

Today (Sunday), we got Bob back down to his office, where he sat at his desk for a good hour and a half or so, cleaning up his desk, doing virus scans and such on his computer (wouldn't have to do that if he had a Mac . . . ) Tomorrow, we might try an outing in the car, just to see how it goes . . .

This working from home gig (sometimes from the hospital) for the past six months and counting, is the best job I've ever had. Wouldn't trade it for anything . . . It's also the hardest job (mentally and emotionally, more than physically), but I can't imagine anywhere else I'd rather be right now, than with Bob, 24/7. It's a blessing, an honor, a position I take most seriously, with every cell of my being, with all my heart, mind and soul. . .

Thursday, January 6, 2011

Back home . . .again . . .

Discharged from the U around 4 this afternoon; got home and settled in without incident. Thought we were done with that place, once and for all, but ended up spending nearly two weeks there with this latest crisis. But, other than a few extra prescriptions to treat the ulcer that caused the horrific bleeding that sent Bob into the ER then ICU then back up to 7th floor, nothing more has changed with his home care. We met with his primary care doc this morning, who will be our "go-to" contact at the U from here on out. . .

Also got a call back from Doc Writes-On-Her-Pants tonight (I had left a message with her a few days ago), as I was on my way home from grabbing a few groceries for the next few days. Had an awesome conversation with her regarding alternative/complementary treatments (an interest of hers) that we might explore. The goal now is to try to regain a sense of control, turn our attentions toward Bob's quality of life, a significant piece of his care that's been glaringly ignored by conventional medicine, for the entire year Bob's been at the U. Doc WOHP isn't the first doctor who has told me that the current, conventional modality of medicine is so broken, it's gonna take a helluva lot to fix it (as though I needed someone else to point that out to me. nice to have those thoughts confirmed by someone with "MD" behind her name, though). It's a system that blatantly, arrogantly ignores patients' quality of life, void of any consideration of truly "whole-"istic care . . . I would never say one should completely eschew modern medicine, but to ignore nutrition, the mind-body connection—the power of the mind, spirit, heart, soul—while treating the physical body is a travesty. . . so much evidence supports the success of treating the entire body vs. just parts. . . why the twain shall never meet is beyond me . . .

Anyhow, nice, very quiet night at home, even the dogs are better behaved (must be Bob's calming presence); chicken enchiladas in a tomatillo sauce for dinner. Bob is so tired tonight, but is resisting going to bed. Wasn't sleeping well at the hospital, maybe that has something to do with it, sleep schedule could be messed up, perhaps. But, he seems pretty tired now, so hopefully tonight will be a good night's sleep, for once. . . speaking of tired, I need to hit the hay soon. . . xxooxxoo j

Saturday, January 1, 2011

Happy New Year . . .

January 1, 2011. Happy New Year! Sounds quite heavy, almost ironic, coming from this source, doesn't it? I do truly mean for all of you to have a most wonderful, blessing-filled new year and hope that, in spite of the stuff going on on our end, you don't stop sharing with us all the wonderful, beautiful things life brings to you and your family.

Believe you me, I can hear, almost as piercing as chalk screeching across a blackboard, the painful hesitation behind so many face when I ask "what's new?" Don't hold back! Tell me, tell me! I want to hear about babies being born, about new jobs, a funny kid story, a transfer across the state or country, a graduation, a rant about an insensitive spouse, a retirement, death in the family, your garden, a new kitchen remodel—all of it! It's LIFE, people!!! SHIT HAPPENS!!!! GOOD AND BAD!!!! Your stories help to instill, ingrain, reinforce, solidify in me the hope and belief that life goes on, that the world carries on, despite, in spite of, in the face of adversity. . . even the mundane, petty complaints of shitty jobs, lame relationships, "why don't I have what ____ has???" kind of shit has its place. We all experience it, it's part of life. As long as you don't dwell. Seriously—mention it and move on. Wallowing in that kind of crap will result in a well-deserved bitch-slap from yours truly (sorry, Mom).

I've had a few incidents lately, maybe it's the holiday season that seems to possess peoples' brain? an eclipse of which I'm unaware? Carbon monoxide poisoning? Ice dams?—I can't quite explain the bizarre increase in frequency—but it seems many people are concerned about my "religious affiliation," in the midst of all that's been happening in our world. I use the phrase "religious affiliation," as for me, that's more what it's about, than anything. Nothing more, nothing less. It's happening in enough frequency that I finally feel a mass blog address is in order, because I'd end up with writer's cramp, if I decided to address everyone personally. . .

First of all, I am taken aback (I'm working very hard to tone down my language, peeps—New Year's resolution, you ask? No, guilt trip from my mom. Last year, I would have said fucking pissed!!!) at the audacity, the arrogance and the self-righteousness of those who have felt the "need" to tell me what to feel, how to feel, where to feel it, and such. Unbelievable, is the first word that comes to mind. No body, and I don't care what you've gone through in your life, has any idea what Bob and I have experienced, are experiencing, will be experiencing throughout this ordeal, and it is NOT YOUR PLACE TO INSTRUCT US AS SUCH. It's beyond self-righteousness, to tell anyone facing adversity what to feel, how to feel it, or what's right or wrong, in their experience. We all have our own journey to travel, we will all approach it the way that works (or sometimes doesn't work) for us, and not one single person will ever know what anyone else's path is like. Ask any parent—does simply telling your kid to do or not do something prevent it? If only it were that simple, we'd all be without flaws. A simple lesson, but amazingly, one many people fail to "get . . ."

Despite the astounding shit that Bob and I have experienced in the past year, I'd never, ever, ever be so arrogant as to tell someone else how to get through their own trials. Mainly because I'm nuts and I'd hate to be responsible for anyone else to follow suit, but on the off-chance that I might be even close to being right (whatever the hell that means), it still means nothing to someone else. We all come from different backgrounds, have vast and varied variables that color our life experiences; as such, there's no way any one experience can mirror another. Not even close. Therefore, by default, that makes no one an expert and all of us novices, in the Game of Life.

As a few of you might have inferred from the past year, I'm not a huge Bible follower (ummm.... alright, not even a tiny bit), but I did glean this lovely tidbit from a facebook friend's page, and it really struck a lovely chord with me:

‎1 John 2:4-6
4 Whoever says "I know him" but does not keep his commandments is a liar, and the truth is not in him, 5 but whoever keeps his word, in him truly the love of God is perfected. By this we may know that we are in him: 6 whoever says he abides in him ought to walk in the same way in which he walked.


Basically, to me (and I could be so far off base I'm not even playing the same game anymore), this is saying: shut your damn piehole and simply DO good in the world. No ulterior motives, no other reason behind your words, actions, or thoughts than to simply do good. Don't judge, don't hate, don't compare, don't worry about or try to change others, just concentrate on YOURSELF, DAMMIT! If ALL of us could adhere to this very simple tenet, the rest of the world would take care of itself. Or maybe not. Who am I to say . . .

Perhaps that verse resonated so soundly with me is the fact that this is how Bob has lived his whole life, without a preacher or church or bible telling him to do so. Just because. He does not concern himself with anything that anyone else says, does, thinks, feels. His philosophy has always been "to each their own," and basically, "why would you go out of your way to intentionally hurt someone else?" His motives, his actions, his words, have always been pure, untainted by worries of what anyone else is doing, saying, thinking. I recall vividly, something Penny told me a while back, about him. She said that when Bob was in high school, he said that he never understood "peer pressure," because he never felt pressured to do anything or be anyone than who he was. If someone else didn't like it, who cares?

"Who cares?" Really, who does? How 'bout, if for one of our new year's resolutions, we all adopted even just a tiny bit of that philosphy of "Who cares?" And I don't mean "who cares," in an insensitive kind of way, more of a "who cares" in a less-about-the-shit-that-doesn't-really-matter kind of way . . . Maybe we'd all live just a little more fully, judge just a little less harshly, push ourselves just a little more, love just a little more purely . . . and maybe now, you understand, at least a little bit, why my heart is broken, so deeply, so intricately, so irreparably . . .

Who cares, indeed. . . HNY, peeps. . .

xxooxxo LOVE!

p.s. Oh, what about Bob, you ask? Stable, still at the U, nothing monumental to report (yeah!) . . .hemoglobin levels have been fluctuating for no apparent reason, had 2 units of blood last night, seemed to help. . . advanced to "soft diet" today—mac&cheese and clam chowder for lunch, mushroom and barley soup and a fruit plate with cottage cheese for dinner . . . looking at maybe a discharge maybe early next week, Monday or Tuesday . . . day by day . . .