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!