Really helps to know the nurses, man . . .

My helpful hint of the day pertains to navigating the healthcare system: if the nurses already know you're just enough crazy, I mean, barely teetering on the edge of sanity and lockdown, because they've seen or heard you in action before, they'll do whatever it takes to keep you from melting down in their presence, even going so far as getting you in right away to see a doctor who is normally booked up for weeks, or producing a cup of rich French pressed coffee in the ER (that's a cute li'l story for another time, if I remember to come back to it) . . . in other words, don't save this precious trump card for sometime down the road—pull 'er out right at the start. It helps in establishing and solidifying your crazy credibility quotient, if you ever have to deal with a healthcare system for any length of time. 'Course, it always helps to be a little nuts, too . . .

A few phone calls today got Bob an appointment with his cardiologist right away tomorrow morning (when Bob's primary care nurse couldn't get him in until the end of July), and the surgeon's nurse on the ball to start coordinating for surgery. The main deal is his heart doc needs to give his blessing, that Bob's recovered well enough from a cardiac standpoint, to proceed with surgery. Why does all of this feel so strangely familiar . . . played phone tag with his palliative care doc today, too. Haven't seen her since Bob was hospitalized in the beginning of June, after the latest heart attack, but haven't seen or heard from her since. Left a message that we're in the process of getting the surgery back on track, but in the meantime, does she have any suggestions about what to do for the increase in pain? Bob does have a boatload of Neurontin, a nerve pain medication that was stopped a while back, for some reason, and I asked if it'd be okay to maybe start that back in small doses, since he's being tapered off the steroid. She called back when I wasn't by my phone, and left a message saying he should be okay to try the Neurontin again, but sounded kind of irritated that the steroid was being tapered in the first place . . . because the shit choked his adrenal glands a good enough answer? I do want to talk to her specifically about that, so another phone call will happen tomorrow.

Quite day at the home front today. Lots of sleeping, some good meals in, a walk or two outside for fresh air, more sleep. The pain in Bob's leg keeps him from being on his feet for long, so long stretches of sleep are punctuated by bits of activity. I am grateful for these quiet days, these restful days, even though Bob is in more pain, he's mentally with me, he's eating well, he is getting up and about, just not as much as before. I guess the trade-off for mental clarity is more pain. . . and hard to say which is worse . . .

It's getting late, should hit the hay, as it'll be a long stretch in the heart of rush hour tomorrow a.m. Funny how it seems like ancient history, the last time Bob was in the hospital, and I did that drive at least twice a day, some days. . . I'm sure my awesome rush hour driving tactics are gonna be a little rusty . . .

Let's get this show on the road! (again . . .)

And tonight for dinner {{{{{drum roll}}}} TA-DA! Frozen pizza! (needle rips across vinyl album, followed by pregnant pause, then crickets. . . ) Just for the record, this did not result for a lack of trying on my behalf—I offered to make sweet Italian sausage, zucchini, onion, sun-dried tomatoes and black olives sauteed in basil olive oil (thanks, Surdyks!) and garlic, then tossed with fresh parmesano reggiano (also from the Surdyk's booty), but Bob made a little face and said, "Naaahhh, not tonight . . ." Jack's pizza? I countered. "Okay!" was his all-too quick response. Listen, if you're not keen on my cooking, buddy, just say the word, and I'll gladly hang up the apron . . . but quite honestly, taking a break from the creative cuisine is a nice little break. And, I get it. Eating has become quite an endeavor again, physically, so I know Bob's thinking he doesn't want me to go through so much trouble when he's really in no condition to truly appreciate it. That's not the point, from my point of view, but I get it . . .

So, Jack's it was. Bob again ate in the bedroom, lying on the bed, as it's just getting too hard to be on his feet for very long before the pain sets in. I made several calls to doctors today, to try to get the surgery show back on track. Still waiting to hear back from cardiology, as they're really the deciding factor in the whole surgery thing, according to the surgeon's office, whom I also called today. Also made a call to palliative care on-call, because of the intensity of Bob's pain. We're wondering if it would be okay to start up his Neurontin again, to see if that would help at all, since he's tapering off the steroid. Neurontin was prescribed way back when Bob had back surgery and was part of his pain regiment until the steroid was added to the mix. For some reason I don't remember, the Neurontin was discontinued. The on-call doc said it should be fine to start it again, at a small dose, as Neurontin is a safe drug with very little side effects or interactions, but we've heard that one before . . . Bob, for now, has opted to not take one, and ride it out one more night. I can call his palliative care doc tomorrow for more details. As long as he's lying down, he feels pretty good. It's that getting up part that kicks it . . . tough gig, when your life is reduced to flat out on a mattress. Though come to think of it, Chelsea Handler made millions exploiting her horizontal life . . .

So, back in a holding pattern, till we can get all the players on the field again (like how I toss about sports analogies so frequently, as though I'm some sort of athlete or something?). By staying on the phone, trying to keep eveyone in the loop, I feel like we're doing something. Even if it's just spinning wheels in the mud . . .

I ate my pizza out on the deck again tonight, accompanied by a beer from my favorite brewery, Bell's, out of Comstock, MI. As I gnawed on my chewy slab of cardboard covered in salty fake cheese and rubbery pepperoni (can you tell I'm still a tad bitter about not getting to create my Italian dish?), I heard a rumbling coming from beyond the trees in front of our deck. Rocco ran to the deck railing, poised and alert, then bolted back to me, then back to the edge of the deck. I stood up, walked to the railing and peered through the trees. The sound was vaguely familiar, but much closer than I'd heard before. I rand to grab the digital camera from inside, Just as I returned to the deck, from above the trees, arose this image . . . (no, it's not Jesus . . . or Mary. Or even the most under-rated, but-he-had-the-ride-or-it-never-would-have-happened minor of supporting characters, humble Joseph.)

The hot-air balloon slid out from behind the trees into full view. I could hear voices, and started waiving my arms, yelling, "Hello! Hello!" to them as though I were drowning at sea and they were the Coast Guard. Several people peered from over the edge of the basket and waved back. Rocco didn't know what to do—here was this great big talking ball tormenting him from the sky. . . he ran from one side of the deck to the other, never averting his gaze from the sky above, but never uttering so much as a squeal, either. The patio door slid open from the bedroom on the other side of the house and I saw Bob slowly walk out onto the deck, looking up as the balloon passed overhead. I snapped a few more pictures before the big colorful orb finally slid out of sight on the other side of the ridge.

We've seen and heard the hot air balloons before, but never this close to the house, passing directly overhead. I swear, if someone had jumped, they could have landed fairly safely (barring missing hard, lethal objects such as trees or houses and electrical things like power lines, and humongous granite monoliths that seem to be the favored lawn ornament in these parts, our house included . . . if they were all avoided, one might simply suffer maybe just a few broken bones, a concussion, perhaps) . . . so, hopefully tomorrow, we'll hear form a few doctors and have a few more pieces to the puzzle back in place. LOVE! to all!

For the love of god and small children, don't forget the bottoms of your feet!!

(my laptop, hydrangea blooms, illuminated by citronella candles in the darkness of the deck. . . )

Seriously. When have you ever thought about hosin' down the soles of your feet with bug spray?!? Never entered my mind until tonight, when the only part of my body that was bitten by a freakin' skeeter was the bottom of my foot. Now, it's driving me crazy, scraping the sole of my foot against the leg of the patio table, to no avail . . . I've been using this fabulous repellent, too—all natural, with oils of patchouli, lemon grass, citronella, catnip, from a company called V'tae, and I shit you not, it works as well, if not better, than OFF or any other toxic concoction labeled "bug repellant." And smells divine, to boot. But you have to remember to spray the soles of your feet!

Sitting outside in the cool darkness on our deck tonight, after dinner, after walking the dogs (again), after cleaning up the kitchen, starting laundry . . . The deck is my home office when the weather is good. Love, love, love this space. . . oak tree umbrella, breeze travels through—not too little, not too much—just so . . . tonight, we had dinner with the bounty of my first trip to the farmer's market this summer. Zucchini burgers: shredded a couple small zucchinis, a small onion, a handful of baby carrots, a clove of garlic in the food processor, then added the concoction to a pound of

ground beef. Oh, and tossed in a small container of feta cheese, for fun. Shape into patties, grill. Also cooked up some beets and greens (and stems—no wastin' anything in this house, man). I cleaned and trimmed the beets, tossed in the oven for an hour or so . . . sauteed the greens and stemswith a small onion, garlic and olive oil, dash salt and pepper, and added peeled and quartered beets to heat through.

I wish Bob could have joined me out here. Kinda lonely to eat on the deck all by myself. At least the doggies were both outside to keep me company (e.g. irritate the hell out of me), both couldn't get close enough to me (e.g., my burger . . .)

Bob's been having a tough couple of days. Nothing specific, nothing monumental, just tired, no energy, feeling kind of weak . . . He's been eating his meals in bed the past day or so, as it's been hard to stand long enough to even eat a meal, with pain and weakness interfering. Reminds me of the early days of this journey, when I'd bring him a plate of breakfast or whatever down to the basement, so he could eat while lying on the futon, on his stomach. . . almost seems like we're taking some steps backward . . .

Tomorrow, I'll be making a few calls, to his cardiologist, to primary care and maybe even to the surgeon's office, to start the surgery ball rolling again. A lot of things need to be in place for the surgery—the two main surgeons' schedules, the hospital stay to deal with the IV blood thinner, the bowl cleanse (which will be seriously monitored by moi) . . .so let's move . . .

sauteed beets and greens

finished burgers! Almost forgot to document the proof, that I can be domestic when I put my mind to it, I can do it, I can do it . . .

Quiet days, quiet nights . . .

my favorite place to write . . .

Has been a rather quiet week, which is good for the most part, but keeps me from updating much. When I finally do, there's lots to process and sort through. These days, I spend a lot of time doing stuff around the house, try to get as much quality time with Bob, now that I'm home full time. I mow lawn, clean, groceries, walk the dogs, take short walks with Bob, try to get him out and about when he's feeling up to it, making meals, help Bob with his PT exercises . . . even watched a movie today, Happy Gilmore (thanks Jim!)

Much of what goes on during these quiet times is more reflection, philosophizing, analyzing, all that "-izing" stuff that's so hard to write about, subjects about which my opinion changes daily, almost hourly, y'know the ol' "what's the meaning of life" kind of stuff . . . Bob's in a tough spot and can't seem to shake it. Surgery is still just an abstract idea a this point, nothing concrete or penned in a schedule. His heart is still healing, he still needs to gain strength, weight . . . he said the other day, out of frustration, "Why the hell do I have to gain weight or get stronger? Fatter and skinnier people than I have been operated on with no problems, so what's the hold up? I just want to get the show on the road, dammit!" I don't blame him one bit . . . when you're told that surgery is the only curative treatment, and it's been postponed for months, due to setback after setback, then hell, yes, damn everything else and get the show on the road . . . but, it's not like everyone's just sitting around doing nothing. It takes time to heal, and sometimes just that waiting for healing seems like a big waste of time, when we can't actually see signs of anything happening . . . at least he doesn't. . .

He's on less pain medication (though still struggles with controlling the pain. I think part of that is because of the lower steroid. The steroid is, among other things, used for acute pain. He's probably feeling the result of a lower, less powerful dose). Mentally, he's in better shape than ever. I've definitely noted that Bob's appetite has increased dramatically, and for a variety of food, not just ice cream, for the past few weeks. Certainly not near what he was pre-cancer, but absolutely the best it's been in months. We're working diligently at getting three main meals in, plus at least three "snacks" in between. Focus is calories and nutrition. My goal is to try to get at least two servings of fruit and/or veggie with each meal, and at least one serving with the in-between snacks. I've become so domesticated, I hardly recognize myself and I'm sure Bob's thinking, "Where has this woman been for the past 15 years?!?"

Each morning, we start with a real breakfast: it might be pancakes (homemade, mind you, not Bisquick. I know, I know, Domestic Diva, you're thinking. And you can't be further from the truth. I've always said Bob didn't marry me for my domestic qualities—{{wink-wink}}— but he's sure getting used to the routine), bacon and fruit. Or perhaps French toast, sausage, more fruit . . then he'll have a snack an hour or two later, maybe ice cream with 1/2 an Ensure mixed

in, or a slice of cheese, deli meat and fruit . . . lunch is usually light, maybe a sandwich and soup or leftovers from the night before. Then another snack. Then dinner. Last Sunday night, I made a chicken, wild rice, grapes & cashew salad that lasted us a few days, Monday was time with Bob's family, so we had leftovers from their visit. Another night was salmon with a blueberry reduction sauce and garlic mashed potatoes (LOTS of butter and sour cream); then spaghetti with meatballs, fresh green beans with more butter. Last night was beef and shrimp kabobs on the grill, with coconut-lemongrass rice. Freakin' awesome, if I do say so myself . . . his portions aren't what they used to be, pre-cancer (he's one of those guys who could pack it away and you were left wondering where it all went), but overall, his appetite is definitely better.

When Bob was discharged last Saturday, on the top of the list of concerns was to work on his

nutrition and get him ready for surgery. Since he absolutely refused the feeding tube route, his doctors told him that nutrition and hydration were big priorities, getting more than enough calories and fluids in him. My hopes are that, once he gets a few pounds back on his frame, and get his medications straightened out, his energy level will return and he'll be able to be more active and do more things to help his muscle development, too. He's been so weak and emaciated, it's been a cruel cycle for a long time: he couldn't eat, for a multitude of reasons, which lead to more and more weight loss, which lead to weakness and loss of energy, which lead to more weight loss . . . round and round and round . . . (coconut rice, above. Just substitute a can of coconut milk for water when preparing rice. I use brown basmati rice, and Trader Joe's light coconut milk. Added a stalk or two of lemon grass while cooking, a big squeeze of lime, dash of ginger syrup to cooking, then chopped cilantro at end. Good eatin' I tell ya.)

I've been loosely tracking his calorie intake on an online calorie counter, and even with my conservative estimates, he's pulling in over 2000 calories a day. Granted, in his state, it'll likely take much more than that to make a significant impact, but the fact he's getting that much in, and most of it nutritious calories, is huge, and will at least help maintain, not lose any more weight.

My cell phone rang in the middle of dinner Wednesday night, at a quarter to seven. Normally I don't answer the phone during a meal, but I was surprised to see a U of MN # on caller ID, so I answered. It was the physician's assistant who works with Bob's oncologist, the one who had ordered the steroid taper. She said she got my message from last week, and the update (e.g. an emotional rant) that I'd left with her nurse on Tuesday about Bob's most recent hospitalization and how, once again, it might have been prevented had she (the PA) taken into consideration Bob's precarious health condition and the fact that he's had incidents like this happen over and over and over again, before she started the steroid taper . . .

She told me she had been out of the office all weekend and just got back, but wanted to call us and talk about the hospitalization and see how Bob's doing now . . . it takes a big person, especially someone in a position medical authority, to admit making a mistake, and she did just that. She said she ordered the taper because it's not a good thing to be on a steroid for as long as Bob has, at the level he was at, and that she felt the taper she started was conservative. Normally, people don't have any problems with it, but given Bob's well-documented hyper-sensitivity to any kind of changes in his treatments, she should have exercised even more caution . . .

I truly appreciated the phone call and the chance to let off a little steam, though in the long run, it doesn't change the fact that ultimately, Bob is the one who pays the price for all the tinkering and "experimenting" and that price usually ends up being hefty. . . in this big, ugly battle, finding someone or something to blame seems to be a common past time of mine, searching for something at which to channel the anger, grief, horror, immense sadness that presses on me like a load of rocks . . . anger is okay, I think, as long as I try to point it in a useful direction, that making everyone aware of how precarious Bob's condition is, and that absolute caution must be made when making any sort of changes to his treatment, no matter how seemingly small and benign.

Right now, my latest rant is the fact that our health care system is absolutely, completely, utterly, without a doubt anti-preventive in focus. There's no money to be had in making and/or keeping people well . . . I sound like a crazy conspiracy theorist, but I've witnessed time and time again, not only with Bob's situation, but with my dad's when he was still alive, with people around me, reading the news . . . our medical system made Bob sick, with its treatments, and its medications. It dropped the ball BIG time in keeping him in the loop about potential problems he might down the road . . . even when signs started appearing, when he had his first heart attack three years ago, we were still kept in the dark . . . and I'm so freakin' sick and tired of hearing, "You have to be your own advocate for your own healthcare," I could run screaming from the room. Being your own advocate is exhausting, time-consuming, overwhelming, and the majority of us are completely, utterly unqualified for the job. Hell, all the doctors who see Bob don't know what the hell to think of his situation most of the time . . . But all you can do is try . . . you have to try. . .and keep on fighting. And keep on trying to find the good in a day, to keep the spirits up . . .

Bob had another check-in appointment with his primary care doc yesterday. Nothing major to report except that Dr. S wanted his thyroid levels checked; he thought Bob was on a pretty high dose of thyroid med (he's been on the med since his childhood, as his thyroid was affected by the radiation). In looking at several of his most recent blood work results, Doc S felt Bob's TSH (thyroid stimulating hormone) levels were very low, leading him to believe Bob's on too high a dose, which can also be contributing to the anxiety, weight loss, tremors in his hands, difficulty sleeping . . . of course, he has a lot of other things going on that could be contributing to these symptoms, too, but Doc S said his TSH levels have been consistently very low over the past several blood draws, so he's going to slowly decrease Bob's thyroid med. Funny, once again, how this information has been in Bob's records for all to see, but only now are we told this information . . . Jesus, Mary and Joseph . . . and yes, I kind of freaked a little at the thought of once again "tinkering" with one of his meds, but his primary doc at least half-way assured me that this was likely going to be a good thing overall for Bob . . .

Now, today, he's started that lower dose of thyroid med, along with another drop in the steroid, and to top it off, added his blood pressure med back into the mix, because his heart rate has been consistently high for a few weeks now (usually over 115-120, even though his blood pressure isn't always that high). Already, even with such tiny changes in each medication, he's feeling the effects—very sluggish and lacking energy today . . . feels "off" even more than before. . . he says it's not enough to warrant a call to an on-call doc, but my whole body is on alert, in the event something seems to tip too far one way or another. . .

The week has been sprinkled with little bits of life going on around us, penetrating our cloistered existence. . . because that's what happens, life still goes on around us, with or without us. My sister, Gretch, called the other day to tell me that the son of a client of ours passed away after a long, valiant battle with colon cancer. He was 28. Father of three beautiful children. Much too young for colon cancer—I think he was about 25 when he started experiencing problems—wasn't diagnosed for quite some time, as the chances of getting colon cancer at that age are almost non-existent, wasn't even on the doctors' radars . . .

This same client recently found out that her husband has pancreatic cancer. Again, J, M & J . . . somebody tell her that God doesn't give you any more than you can handle. Or that everything happens for a reason. Or just remember that there are others in the world who have it worse . . . she and I had a discussion about that one night while she was in getting her hair done, about the things people say to try to make you feel better . . . well-meaning, well-intended, but end up pissing the hell out of you, instead. How about a simple, heart-felt, "I'm sorry . . ." and leave it at that. . . Her husband's prognosis is grim; he's refused any treatment because they're told it won't extend his life significantly, and after seeing the horrific personal war his son battled for three years, he doesn't want to go through that. Can't say I blame the man . . . Gretch and I went to the wake on Thursday night. Funeral home was overflowing with family and friends of this young man. . . poster boards of photographs on easels lined the walls of the hall, a video of more photos played on a TV in a corner, images of his childhood, teen years, adult years, family, friends . . . baseball, motorcycles, fishing, family scenes flashing before us . . . fuck cancer.

A delivery van pulls into the driveway the other day. Back door pops open, driver gets out and pulls out a huge wooden box wrapped in cellophane, tied with gauzy ribbon. Rocco barks furiously from the deck, I hush him and go out to meet the driver. I can see that the box is an

old wine crate, and is overflowing with treats I'm pretty sure are from Surdyk's, Bob's employer when all this began. We've received a few boxes previously from them, all filled to the gills with amazing treats from the store, and this time is no exception. The driver carries the box into the house, sets it on the kitchen counter, and bids us good day. Rocco sends the driver off with a few last barks and then runs up to the patio door to be let in so he, too, can see what's in the crate. Bob shuffles into the kitchen to see what the chaos is all about.

I untie the ribbon, strip the crate of its cellophane dressing and dig in, pulling out packages of cheeses, a bottle of extra virgin olive oil, another of a seasoned olive oil, a box of lavender-ginger shortcakes (which weigh in at a whopping 230 calories each! Guess who's going go be force-fed these babies?!? Well, I'll have to test one, of course . . .), and several containers of a strange looking concoction with the word congee written with a Sharpee across their tops.

Along with the goodies is a note, signed by the Surdyks. Kind words of well-wishes are accompanied with an explanation of what congee is: a traditional Asian porridge-like dish of chicken, jasmine rice, ginger, onions, carrots . . . according to the note, the chef at Surdyk's adapted this recipe for an employee's husband who was battling testicular cancer and finding it hard to eat anything. The congee, per to the note, was the first positive eating experience this man had, porridge from heaven . . . Looks a little funky in the clear containers, a greyish goop with chunks of chicken peeking through. I'm a tad skeptical, but c'mon, this came from Surdyk's, the gourmet food and wine mecca of the Midwest! I open a container and took a deep whiff. Smelled vaguely familiar, like chicken soup, laced with subtle ginger . . . I'm always game to try a new dish, and normally Bob is, too, but not lately, given all the things interfering with his appetite, taste buds, etc., so I'm a little hesitant to feed this mysterious goo to him, but then thought, what the hell. We have other stuff in the joint that he can eat, if this doesn't pan out, so . . .

We had the congee for lunch yesterday, after we got back home from his doc appointment. It was amazingly delicious in its simplicity. . . I steamed some carrots with a butter-ginger glaze, and had fruit along with it, and we both consumed a huge bowl of it. Bob noted how it seems that every culture seems to have its own version of comforting "chicken soup"-type recipe . . . my Irish grandma made chicken soup with big fat home-made egg noodles . . . Bob's mom makes something from their Polish ancestry called, "Kubley soup" (and I know I totally mangled the spelling on that—too many vowels, not enough consonants, for starters), which is a chicken dumpling soup . . . the congee was soothing, satisfying, and made the perfect lunch. . . .

Last night, before our k-bob meal, my sis, Gretchen, came out and did an hour long session of healing touch therapy for Bob. Afterward, he was conscious just long enough to float out of the bedroom and eat a plateful of k-bobs and rice, then floated back to to bed, where he remained for the rest of the night.

Prior to the Surdyk's delivery, Bob was in kind of a funk, a mood I see more and more of in him lately. Understandable, no doubt, but I remind him, again and again, that he can't let this bug ugly thing overtake him . . . Pollyanna as it seems, I still very strongly believe that in this big, fucked up mess we're living in, despite all the out of control things going on to him, within him, there is one thing he does have control of, that I have control of. And that is the choice in how we respond to this big ol' shitpot we're swimming in . . . it's okay, hell, it's more than okay, it's normal, it's right, it's a must, to be angry, depressed, hopeless, furious, tired . . . but we can also chose to laugh now and then, to be grateful for friends and family that are thinking about us, praying for us, sending us generous gifts in the mail and to his benefit account, popping off sweet little e-mails or cards now and then, waiting in the wings for us to say the word to jump in and help (and I'll be the first to admit we've been holding off on that. Such subborn ol' mules, the both of us. . . but at the same time, it's hard. We live in the boonies. It's not easy for someone to just "pop" in to visit, or to ask someone to check on the dogs, or whatever we might need . . .)

We are blessed, with friends, family, even people we barely know, who are fighting this fight right along side with us. I tell Bob, reach out to friends, connect with an e-mail, a quick text. It's a huge effort for him, I know. But I also know that people have backed off on contacting him because of all the shit he's gone through lately. What the hell does one say, or do? Friends and family don't want to bother, don't want to interfere, say the wrong thing, do the wrong thing . . . I get it, I totally get it . . . a tough place to be, the friend or family member of someone in crisis. So, I tell Bob, you be the one to reach out. Send a message. Your friends are thinking about you, waiting for the word, they'd love to hear from you . . . the basket of goodies arrived at just the right time. That afternoon, he sent a few e-mails, a couple of texts. And wouldn't you know it, had responses in his in-box almost immediately . . . he's still in a funk, is still exhausted, but I know it boosted him, to hear from those people to whom he reach out.

Love! to all.

Happy 4th . . .

Bob gained his independence from the hospital yesterday—send up the fireworks and blast the cannons! As always, it's a conflicting event—wanting to be home, but scared about the potential "what if's" . . . It was a long day of waiting around before discharge, as he had to have another blood test done, to test the function of his adrenal glands. The results took longer to get back than expected, then we had a long wait for pharmacy to fill a few new prescriptions, didn't get out of the building until after 6 p.m.

The blood test he had was first done on Friday and then again yesterday, to determine how well his adrenals are working, given that he's been on a steroid (dexamethasone) for so long. As suspected, his adrenal glands are shot right now. The steroid has been doing the job of the adrenals, and it doesn't take much time before the adrenal glands essentially quit working. This, according to the endocrinologists who observed him over the course of this hospitalization, explains why Bob had the sudden crash, the generalized, over-all feeling like shit (more like dying, in his words, worse than he's ever felt throughout this whole ordeal, is that even humanly possible, given all the near-death incidents he's got under his belt already?!) ; his adrenal glands need time to make up for not working for such a long spell. Take that + the obvious and prevalent reasons/symptoms of having an active cancer + recovering from a heart attack = one sick dude. They said the steroid taper was started too much, too soon and needs to be done more gradually, over a longer period of time, given his hypersensitivity to the process. Thus, the reasoning to switch him from dexamethasone to hydrocortisone, the latter being able to taper in smaller increments.

Eventually, we were released from the care of the U of MN, and sent on our merry way, with the foreboding words that it's likely, given Bob's overall condition, he'll be back. The other big issue we've been 'raslin' with is Bob's nutrition/hydration. He's still severely underweight (a dietician who paid him a visit said he's far below their standard of "malnourished," according to his body mass index, which is kind of a hypothetical number based on the ration of one's hight to weight). Bob's never been a big guy—even at his "top" weight, he tipped the scales at maybe 130 lbs. But he's been holding steady at under 110 lbs, which is a dramatic loss, and translates to less than 16% body fat. According to charts I've consulted, less than 2% of the population have a lower BMI than Bob. And those people probably live in remote areas of India and China . . . and Hollywood.

Bob was absolutely adamant about not wanting a feeding tube, and we had to back off on that idea. We tried—oh, lordy how we tried—to convince him that we've been down this road endless times before and he always says, "I'll eat more! I'll eat more!" and then drops a few more pounds in the process—there's no way in hell he can possibly consume enough calories to make up for the deficit he's rackin' up (hmmmm . . . kind of reminds me of our government, but that's another blog for another time . . .). I ran into the colorectal surgeon in the stairwell yesterday, who will be part of Bob's surgery (I like to take the stairs, up all seven floors, for stress relief. Evidently, Doc M. does too . . .), and being we just saw him in clinic a few days prior, his first words were: "What are you doing here?!" I told him I like hanging out at the hospital on my free time . . . then I told him Bob had been admitted again. His hand slapped his forehead and he said, "Now what?!?" Gave him the quick down 'n' dirty, then asked, in his professional opinion, would he operate on Bob, in his current physical state? Absolutely not, was his reply. You tell him, from me, that his nutrition is of the utmost importance right now, and if he doesn't, or can't, put the weight on himself, he has to consider tube feeding. No way around it . . .

So, once again, Bob and I had the "come to Jesus" talk about his nutrition, his weight, and howi it's a big contributor to his overall health. We've had this conversation countless times before, he promises to eat better, to eat more, drink more, to do whatever it takes, but then we're back to square one, or negative square one, whatever that is . . . I know it's so hard for him because if it's not one thing, it's another getting in the way: loss of appetite, intermittent nausea, mouth sores, thrush, fatigue . . .we looked each other in the eye and solemnly swore that our sole (soul) mission is to get as much food as we can in him. That he would make an even better effort, that I would make daily menus if that's what it takes, since he's such a planner, that we'd try anything and everything, to get some weight on him. A ten pound gain would be astounding . . . he made the decision that food is his medicine, to be taken at scheduled intervals, just like all the other pills. No choice about it. The docs and nurses seemed heartily impressed with his food:medicine analogy. If they use that in marketing materials, we may have to sue . . .

And I, personally, am adamant about the calories not being just freakin' ice cream. He needs calories but he also needs nutrition—vitamins, minerals, protein, fiber—all the shit the body needs to survive, thrive, and fight shit like cancer, degenerative diseases, environmental assaults . . .

I must admit, I'm in absolute horror with what the hospital recommends as "nutrition": an abundance of processed foods, refined sugars, "calories, no matter what" kind of attitude, particularly for a cancer patient. I am done with that shit. From here on out, it's calories and nutrition. Bob can't have one without the other, for his ultimate health and well-being. Fats come in other forms than ice cream: in the form of nuts, avocados, olive and other oils . . protein from lean meats, beans, eggs (and to hell with anyone who says eggs are bad for you, unless you're vegan. NOT true. AT all. Even for heart patients. Especially for heart patients.) Fruits and veggies. Whole grains. I won't be militant about this (oh really, Jen?), but I will be firm. Frozen pizzas and ice cream are treats, not the foundation. Real, natural butter over artificial "supplements" (we tried this shit called Benecalorie, which is little more than liquid lard with artificial sugar and chemicals, to be mixed with hot foods like potatoes, rice, etc., to add more calories. Seriously?!? So what if it packs 350 calories in a little packet? How 'bout a few pats of natural butter, or oil?!? (stepping off the soapbox . . . )

And exercise will be a part of our daily routine, no matter how little he can do or feels like doing. A little is better than none. And some mindless comedy movies every other day or so. Bob has had so little to laugh about for months, it's time we split a gut over Adam Sandler . . .

Bob slept much of the day today, only getting up to eat or move around the house a little, to stretch his legs, do a round of exercises prescribed by PT. It's hotter than the 9th circle of hell itself outside,

not to mention the the absolute humidity {{{whewwwww}}}}, which I can physically wring from the air around me, so I don't blame him for trying to conserve energy. I flitted about the house, as I do, cleaning, walking Rocco (too hot for Gaia), cooked meals for the next day or so . . . went to Linder's and made a frivolous purchase of a few stunning hanging baskets for the deck. Everything is a frivolous purchase these days, with both of us not working, but our deck was begging for a burst of color, a blast of flower power, so I splurged on two beauties that will hopefully survive the rest of summer. Given my track record (I need plants like hostas and lilies—things the apocalypse won't even touch), thank God I got them 50% off . . . such a steep road ahead, and once again, so many unknowns . . . a day at a time, is all we can do. And, I think it's about time I tapped into some of those fantastic recipes we were flooded with way back when all this began . . . lots of recipes with gooey ingredients like cheese, cream, whole milk, eggs, sausage . . . I think I just put on five pounds just writing about 'em . . .

We had an unexpected visitor drop by today, Bob's uncle Richard, who lives down in the southwest corner of the state. He was up in the metro area visiting a friend and decided to swing over to our house to say "hi." I was surprised he even found us, but thanks to the miracle of GPS, no one is a recluse anymore, at least if you have an address. He stayed for just few minutes, literally, even declined my offer to come inside, and then was off. Nice little visit, short as it was. Tomorrow, Bob's entire family comes to visit (which consists of Penny and Jim, Nancy and her husband, Brian and their two adorable girls, Claire and Grace. And let's not forget Casper, the friendly springer spaniel! Rocco will be in heaven! Gaia will be in hell!

Happy 4th to all! Let freedom ring!

A seemingly farfetched analogy . . .

I had this little epiphany last night, and it's pretty convoluted and I'll try my best to explain it, so stay with me here, peeps, but I still might lose ya . . .

Bob is staying at least one more day at the U, just to be safe. He had an "incident" last night, where he stood up and his blood pressure bottomed out. He thought he was having another heart attack and freaked out . . . he didn't tell me about it till this morning because, as he said, "I didn't want to worry you," as though I'm usually just sitting around, filing my nails, watching Housewives of Orange county, not worrying about him . . .

Turns out, it was a relatively minor incident; they called it orthostatic hypotension, which means a drop in blood pressure when one stands up from a sitting or lying position. It's usually not serious (unless it's a chronic condition), and I'm placing my bets on the fact that Bob's blood pressure medication was started up again yesterday likely contributed to this. I'm no doctor and I don't play one on TV, but since being unemployed, I'm getting to be quite in tuned to his body rhythms and what is "normal" and what is absolutely not with him. Yes, I'm nuts, but pushing that nurse call button or calling his doctors or bringing him into the ER when something arises that I think ain't right has become as natural to me as breathing or picking zits.

His blood pressure has been running fairly high over the past week or so because he was temporarily taken off all blood pressure meds during his last hospitalization, as they were causing him to have dangerously low b.p. The decision was made just yesterday, to put him back on b.p. meds, but on a very low dose, to start. His blood pressure came down almost immediately since starting licinopril, but because the drug's job is to lower blood pressure so the recovering heart doesn't have to work so hard, it's not uncommon for someone on this drug to experience a drop in b.p. if they stand up too quickly.

Bob's nurses are awesome and have been wonderful advocates for him, being that so many of them have taken care of him up on 7D and know him and his story well. As one of his nurses said to me when he was telling me the story, "We never hear a peep out of Bob, so when we heard him call out from his room, we knew something wasn't right, and we all came running . . ." When the incident happened, his nurse told me, it was alarming, but almost immediately, his blood pressure returned to normal after sitting upright for a short while . . . he was thoroughly examined, and it was determined that it was probably just because he stood up too quickly. Now that he's back on blood pressure meds, he has to remember to take it very slowly, when rising from a lying or sitting position. An easy remedy to prevent this, his nurse (who also has chronically low blood pressure) told us, is to simply wiggle his toes to get the blood flowing through the rest of the body before standing up.

It's a relief to know it was a minor, preventable incident, but at the time, Bob truly thought he was having yet another heart attack, and said this was the first time in this endless war he's waging, that he really felt like, "Please . . . just end this now . . . " And I do have to wonder, more and more lately, how much, just how much, can a body take? Can a mind take? How much longer can this go on?

I was with Bob for a few hours this morning then went home to let the dogs out, run a few errands and was back mid afternoon. Funny, how I can sit for hours in Bob's room and no one but his nurse says "boo" to us, but the minute I leave, he's flooded with visitors of the white coat kind. Dammit all to hell.

While I was gone, a team of endocrinologists showed up and decided that the likely culprit of this hospitalization is the steroid medication tapering that started this past Saturday. This was mentioned almost as an after-thought when Bob was first admitted on Wednesday, but I picked up on it, and when I got home last night, spend a few hours researching it, and had mentioned it again to the staff oncologist. Bob's been on a steroid called dexamethazone, which was prescribed months ago as an anti-inflammatory, particularly, for bone pain. Other beneficial side effects, especially to a cancer patient, are appetite stimulation and an increase in energy. But the longer someone is on it, the more adverse the side effects, most notably, adrenal suppression, which means that his body is not making natural hormones and steroids on its own.

Bob has been on this steroid for several months now, and it may be contributing to the countless issues Bob's been dealing with—dehydration, lack of sleep, anxiety. . . This lead the oncology PA's decision last week, to taper him off it, which may have been a wise decision, but the staff docs on 7D think it was done too much, too soon. When the drug is tapered, the withdrawal can be very dramatic, and from what I've read, exactly like what Bob had been experiencing prior to his hospitalization. Later, we're told that there's no "right or wrong" way to taper a patient off steroids, that it depends on the individual patient and their situation. Well, what the fuck??!?? As if it's a secret that Bob's health, for the past eight months, has been a precarious balancing act that takes very little to tip it? That he's as fragile as a rare orchid, susceptible to reacting to the slightest changes in his environment? And let's not mention the fact (oh, wait, I am mentioning the fact) that we weren't even told of the very common adverse effects of tapering a steroid . . .

So, the decision was made by the endocrinology team to adjust the tapering to be longer and more gradual, given Bob's already hypersensitivity to the process (which, from what I've read, is not uncommon . . . seriously, I am slowly but surely earning my MD with my own self-administered home schooling here. . .), and that a different steroid is replacing dexamethasone, with the tapering schedule being very different from what was first prescribed. When I read the note the endocrinologists left about the new taper schedule, scribbled on a piece of scrap paper, I immediately buzzed Bob's nurse into his room and asked, basically, WTF is this all about? I have lots of questions and don't want any of this happening until we get them answered. Has any of this been cleared with oncology and cardiology? Does this interfere with any of his current medications? Are there side effects of this new medication we need to be aware of? Are these doctors aware that Bob's health is extremely precarious right now, and that the slightest bit of tweaking and tinkering can send him into a tailspin?!?

I've been having a helluva time explaining to anyone—doctors, family, friends—just how delicate and precarious Bob's health is, and that the slightest inking, however farfetched it seems, can cause a crisis . . . I haven't been able to do so . . .

Until tonight, when my epiphany occurred. I stayed with Bob until almost 7, and then left to run to the grocery store and back home, to let the dogs out, feed them, and do whatever else I do when I'm at home. . . one of those "whatevers" was emptying trash cans throughout the house, and Rocco was tagging along with me. When I went into the master bathroom, he immediately trotted into the walk-in shower and started lapping up water on the shower floor. Odd, I thought, because he's never done that before, but the thought left my brain as quickly as it entered. He's an odd dog and does odd things all day, every day, but it still caught my attention, if only briefly . . .

I spent the better part of the night puttering around the house: feeding the dogs, cleaning the house, watering plants, filling bird feeders and other domestic chores. Eventually, probably a few hours after I'd gotten home, I went downstairs to let Rocco out to run around the backyard. As I walked through the family room, to let Rocco outside, I heard a faint, but peculiar, erratic puttering from the utility room behind me, almost, but not quite, like water dripping. I almost dismissed it as a strange-normal noise the water heater or softener or central air must make, something I've never noticed before.

But, absentmindedly, I walked over to the utility room and opened the door, and to my utter astonishment, found a big puddle of water on the floor. I looked up and saw more water dripping from the ceiling. A nanosecond's worth of thinking, and I realized it must be coming from the bathroom above. I ran upstairs to our master bath and found another large puddle of water covering the entire surface of the bathroom floor that was not there when I was emptying trash cans earlier. A quick assessment of the tiny room told me the water was coming from the shower. I tiptoed through the water to the shower and noticed a tiny trickle of water trailing from the faucet handle down to the shower floor and was now spilling out onto the bathroom floor. I fiddled with the faucet handle (which seems to be stripped) until I could stop the stream of water, mopped up the standing water in the bathroom, then ran downstairs and mopped up more water.

The water situation seems to be contained, at least for now; I might have to replace the shower faucet or at the very least, wrap some tape around the threads . . . this could have lead to a major crisis had I not absentmindedly listened to my gut. But still, I might have averted the water-leaking even sooner, had I acted on the fleeting thought as to why Rocco was licking water from the shower floor . . . but really, why would I have thought to investigate Rocco's goofy shower-licking behavior? As I said, he's an odd dog . . . but, in hindsight, if I had taken a moment or two and really observed the situation . . . but even typing that sentence seems ridiculous . . .

But now, perhaps, you all have a little inkling as to how my day is, every day, with Bob. Why each little hang nail, blood pressure reading, throbbing in his throat, medication tweaking, symptom, side effect—no matter how small and seemingly insignificant, can very quickly, turn into a big fucking deal. And I know, know, know that I'm trying to do, asking others to do, the impossible . . . but that's what you do when you're dealing with cancer and heart attacks and all the awful shit that goes along with the ride . . .

I have been vindicated!

So I'm sitting in Bob's room today, just hanging out when a voice at the door yoo-hoos in, "Hellooo! I'm Jan, the social worker—may I come in?" Bob says sure, and suddenly my mind snaps to attention. Jan. Social worker. . . Could it be . . .

A woman appears in Bob's room and in an instant, I knew it was her. At last . . . we meet again . . . (insert a crescendo of orchestra music here) It's the Jan, the social worker who dissed my handshake back in January, when Bob was doing his first in-patient gig of chemo. It's like a showdown at the OK corral . . .(The Good, the Bad and the Ugly whistling goes here . . .) I'll show her—I will be the first one to not offer my hand this time. And I don't. I sit sweetly in my chair, arms folded across my chest and look her directly in the eye. I'm sure she doesn't remember me, but that's not the point. The point is that I will be the first one to not offer my hand in greeting. And if she does happen to outstretch her hand, I will not take it. I. will. not. take. it.

She waves a stack of papers in our general direction and says, "Someone told me you were interested in getting information about a health care directive, so I brought one for you." Huh? Does she know something we don't know? There has been no discussion at any point since Bob was admitted that we were interest in that. I mean, such a document is important, but we've not talked about it with anyone. I told her this, and that we've been given the form several times previously, and that I thought we'd filled it out already, but what the heck, what's one more time for good measure . . . she kind of stood at the foot of the bed for a moment in a brief awkward moment of silence until I smiled again and said, "Thank you. If we need anything, we'll be sure to call." Hands still folded across my chest, smiling, but still not offering my hand. She finally says, "Well, here's my card. Call if you need anything." I just said that, dummy. . . and she was gone.

"Did you see that, did you see that, Bob?" I turned to him, giddy with passive aggressive excitement. "That was the social worker who blatantly disregarded my outstretched hand back in January! Did you see how I dissed her first this time? That I did not offer my hand first?!?" Bob appears to be ignoring me, eyes closed, no response. Don't blame him, I guess . . .

So, not a whole lot has happened with this recent admission, which was the point, really, to avert a crisis. He's been given continuous IV fluids and has had blood work and a host of other tests. His heart is still recovering remarkably, his appetite is better (not great, but better), pain is fairly well-managed (without turning him into a zombie), no more diarrhea, white blood cell count is not alarmingly high . . . But now we really have to get a grip on this every-other-week hospitalization thing, figure out just why and how Bob seems to have such a disposition to getting dehydrated so quickly to the point where he can get incredibly ill, but then rebounds so well with some IV fluids and a few days in the hospital. He eats better, sleeps better, gets more exercise when in the hospital . . . I have joked before that he likes coming up to 7D because the nurses are much nicer to him than I am at home (though I'm pretty sure it's no joke), but the more I think about it, the more I think there's some truth to that theory. Given all Bob's gone through, I think he feels very safe in the hospital, that being 20 minutes from the nearest ambulance, should something go wrong, is firmly planted in Bob's mind. . .

So we're trying to come up with a plan to help Bob feel safer at home, to put his mind at ease, and to keep up with the hydration and nutrition. He's still very malnourished, and we've had countless dietitians and nutritionists in, talking about what, how much, and how often Bob should be eating. Thing is, we know what he has to be doing, there just happens to be several obstacles getting in the way, first and foremost, the cancer itself. It kicks the metabolism into hyper-drive, it diminishes appetite and thirst, it can cause nausea, changes in taste, lowers satiation . . . which then, in turn affects electrolyte balance, over-all feeling of wellness, energy level . . . we've talked about a temporary feeding tube, as we have to get him as strong and healthy as we can for the pending surgery. He's absolutely adamantly against that, but we've had this conversation every time he's hospitalized—dietitians, nutritionists, everyone comes in and tells Bob what to eat, to use Boost, Ensure, etc. to supplement, to constantly drink fluids, to bulk up on high-calorie foods . . . then we get home and things don't happen. I ride that fine line between being his "food coach" and just being plain and simply annoying to him, nagging relentlessly about eating, drinking . . . the feeding tube may be his only hope to help get adequate calories and nutrients in him, because quite honestly, he'd have to eat like an elephant to even maintain, not to mention actually gain weight. . . we might see if going in on an out-patient basis, for bi-weekly IV fluids, start there and see what happens . . .

And on top of that, Bob's been on a steroid for pain for several months, which over time interferes with the adrenal glands ability to produce hormones, among other things. On the one hand, they give him energy, supposed to increase appetite, and some pain control, but they also can cause infections, mood swings, puffiness, other issues if on them for long periods. So he started tapering off it this past weekend, and after researching it online all night (that's what I do with my time when he's not around . . .), I do believe some of the symptoms he's experiencing are being caused by the steroid taper—the extreme exhaustion, overall feeling of crappiness, but nothing specific . . . adding to the layers . . .

Oh, before I forget, I got a surprise visit by my "oldest" best friend, Lisa, today at the hospital! We've known each other since grade school, her big, joyous family lived around the block from us ("daviddannymikemarkmarylisalona!!!" was how her mom would call the brood home for dinner, the seven kids' names all smooshed together into one word.). Lis was in the cities for a photo shoot (she's a photographer, lives in Alexandria) and called me on the spur of the moment to see if I could meet her for lunch. I told her we were in the hospital, that if she wanted, she could meet me here . . . she jumped on the offer, and joined me for lunch in the cafeteria. She got to see Bob briefly, gave us a ridiculously generous goody bag full of all kinds of fun things . . . It was so awesome to see her, as it's been too long. We had a totally disgusting, uber-salty-greasy lunch in the cafeteria, talked more than we ate, and before we knew it, she leapt to her feet, realizing that her meter must be expired by at least 20 minutes, so she had to make a quick exit. I felt blessed that we were able to make the last-minute get-together work out in the first place, and we did get to spend a good hour and a half playing catch-up, so it was a wonderful treat to see her.

Anyhow, just wanted to throw that in there, as it made my day, and put a smile on Bob's face, to see an "outsider." Bob should be discharged tomorrow, with yet another game plan in place. Stay tuned.