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.