Jewel-toned meals and sunsets, too . . .

My latest hobby, next to making home-made ice cream, is now juicing. Anything that isn't bolted down isn't safe in this house any more . . . I just got the new juicer on Friday, and already I've made a V-8 style veggie juice, apple-pear juice, watermelon-kiwi-strawberry, a mixed-berry juice. So far, Bob has only tried fruit juices, but I add greens to mine, even the fruit juices, for a one-two-punch of nutrients. Bob is easing into the idea, but hasn't quite embraced the idea of spinach with strawberries. Yet. Just my latest attempt to do my part to help Bob get well . . . they are gorgeous juices, deep, rich, colorful liquids full of so many good things. Anything can be juiced, I tell you (plant-based, that is): greens, potatoes, bananas, nuts . . . I've been eyeballing the hostas in the front yard lately. They've gotta be good for something other than a bed for Gaia.

I'm seeing the world in juice-tones: walked Rocco the other night, and the sunset looked so juicy and vibrant, like a blood orange pulsing low in the western horizon. Juice is all around us, man. Love it!

Before I get to rambling, the basic gist of Bob's week is that he'll be hospitalized on Tuesday, August24, and surgery is Friday, August 27. He can have visitors—the more the merrier, but on Thursday, please call ahead, if you can, because I'm sure there will be pre-surgery stuff going on that might interfere with visiting (like the fact he may be sitting on the porcelain throne for a good part of the day, "prepping his bowels" for the big event. . . )

So we arrive at the U for Bob's appointments on Wednesday, I hop out of the car to let Bob out, and look down to see that the front of my formerly bright white v-neck T is splattered in coffee graffiti. Nice. Thankfully, I had the foresight to bring a sweater along, as the exam rooms are oftentimes kept at the temperature of a meat locker, now it will double-duty as a bib. Well, too late for a bib, I guess. Maybe while we're at the U, I can have that hole in my lip fixed, too. . .

As of Wednesday, Bob's pain was excruciating, had been for a few days, at least when he was on his feet. It also kicked in to a degree when he was lying down, made it hard to find a comfortable position at all; as such, sleep has been drastically affected. He sleeps a lot during the day, in small increments, to try to make up for it. Either the pain wakes him, or his alarm does, as he's back to setting his little timer to take something every two hours, to try to stay ahead of the pain. He was afraid we'd have to cancel his appointments on Wednesday, because even the short walks to the clinics might be too much, and sitting in a wheelchair just isn't an option. We just couldn't miss these appointments, so I told him to take more pain meds, to get through. He doesn't have a "maximum" dose on the one that he takes for breakthrough pain, though he's been somewhat conservative in taking them—the delicate balancing act to reduce the pain without turning him into Bob of the Walking Dead. I told him, too, that if his pain is at the point where he just can't take it any more, we'd be at the U already and could have him admitted right then and there. . .

He took extra medication before we left, but during the appointments, he was so uncomfortable—he tried to sit, but that just wasn't working, so he ended up having to lie on his stomach, facing away from Doc Rock and the endocrinologists during the appointments. Of course, they didn't mind, told him to do what he had to, to be comfortable, but makes for an awkward conversation, talking to a wall. . .

Checked in with Bob's primary doc first, a pre-op appointment. Bob's weight was 130—I can't believe that! There may be some variance with the scales at the hospital, but even if they are a few pounds off, he's almost to what he weighted before all this started. Amazing! He's at his top fighting weight and that's such a huge thing, in terms of how he'll withstand the stresses of the surgery and recovery, I can't even tell ya. Thinking back, I can't imagine the outcome of a surgery as long and extensive as what his will be, when he was at 105 lbs., so weak, so emaciated, so many things going wrong during those times . . . now, he has some reserves to fall back on, during recovery, and other than the pain (and lack of sleep because of it), he feels pretty damn good. Primary care was followed by endocrinology, a follow-up appointment to see how things are going with the steroid taper, if his adrenal glands are recovering.

Bob got through the appointment with Doc Rock, barely; we discussed the finer details of the coming week— that he'll be admitted on Tuesday, put on the IV blood thinner, then taken off a few (several? don't remember the exact number, probably because we've heard different things from different people) hours prior to surgery. After discussing Bob's pain with Doc Rock, the plan for his hospitalization and anything else we could think of with, we came up with Plan B: Bob is to increase his breakthrough medication over the next few days, see how he does (it takes a day or two for the increase to take effect) and if he's not feeling better by Friday, we call to have him admitted for pain management. We're willing to try upping his "breakthrough" medication, as he's not showing signs of zombie-dome or mental confusion, hallucinating, falling asleep standing up or any of the other signs of over-medication.

Had an hour to kill before the endocrinology appointment. We went up to their clinic, hoping that maybe there was a cancellation, but no luck. They were able to get us into an unused room so Bob could lie down while we waited, which helped immensely (and certainly beat lying on the dirty carpeted floor, which we were prepared to do, and brought a small blanket and pillow along, just in case). The appointment with endocrinology was quite insightful. It's information I've heard before, but all new to Bob. The adrenal gland stuff happened after his last heart attack when he was really, truly effed up, one of may periods of this crazy carnival ride that he doesn't remember. Doc N (a young guy, cross between Zach Efron and David Spade, I kid you not. Super nice, knows his stuff . . .) explained to Bob that because he was on a very heavy dose of steroids back before he had the last heart attack (the highest dose he's ever seen anyone on, this doc says. WTF?? is what I say . . . ), for pain management, but in the process, the steroids took over the job of the adrenal glands, which in turn, forced them to go dormant. We're told that steroids are never meant to be used long-term for pain management, at that high of a dose, because of al the dangers associated with it.

That explains the increase in pain; the steroid was doing its job helping to control it, and I believe it was intended for him to be on them for just a short time—a week or two, to get him through to his surgery, then the heart attack happened and all hell broke loose . . . again, I "get it" when someone tells me we have to be our own advocates in this big fucked up system, but when disciplines of doctors don't even agree on the treatments, how the hell are we supposed to know what to do?! Bob's primary care doc put him on the 'roids, his oncologist team decided to taper him off, because they felt he was on them too long, and ran the risk of infections, kidney and liver issues (since they had been affected, temporarily, by the heart attack and subsequent issues). But when he had such a severe reaction to the taper, and I called Bob's Palliative care doc to let her know what was going on, she was pissed that he had been taken off them . . . but the endocrinologists, Bob's primary doc, and the oncology team all seem to think that he shouldn't be on them for so long . . . Again, will someone please tell me how I'M supposed to know this without an MD behind my name? And apparently, even that doesn't seem to do the trick, at times!

Which brings me to the big surgery looming in the not-so-distant future, and all the things racing through my head as we race toward this event, once again. All day, I constantly push the thought, "What could possibly go wrong between now and Friday?" out of my head, but it returns, again and again. What else am I not thinking of? What else should I be asking? Am I missing anything? I've called all the doctors involved and left rambling messages about various concerns that pop into my head throughout the day. That Bob wants to meet with both surgeons face-to-face while in the hospital, prior to the surgery, to discuss the procedure and other concerns. That Bob will not undergo the horrific bowl prep he was subjected to the last time—that there has to be another option, because that one just ain't happening. To remind them that Bob is to stay on the aspirin throughout the surgery, and will need extra platelets to help his blood clot as needed, and that he needs a big ol' "stress dose" of steroids during the surgery, because he's adrenal insufficient. That it's his right side that has the tumor . . . maybe I should go mark his right hip with a Sharpie right now, just to be safe . . .

To have been living in this "in-between" world for so long now is such a surreal thing. So out of touch with the "real world, neither of us working, one debilitated by pain, illness, set-backs, horrifying events that have gone on for so long . . . the other, just witness to those events . . .wondering how our world will be when this surgery finally, really, truly arrives, and what our lives will be like afterward. And then my mind stops. Hits a black wall. I can't go beyond that.

So, after all the doctor's appointments, all the calling to various offices I've done all week, all the nurses I've talked to, did it surprise me that 1.) we got a phone call at home, after Bob's appointments on Wednesday, at 8 in the evening, from the orthopedic surgeon who will be removing the tumor. Doc is on vacation and takes the time to call us at home (maybe because his nurse told him that Bob's nutcase wife has called every day the past week?) He talked to me for a good 10 minutes or so, then I handed the phone to Bob, who carried on with the doc for at least another good 15-20 minutes . . . clarified some questions and concerns, said he's absolutely stop in to see Bob before the surgery . . . and 2.) I got an email from Bob's primary doc later that night (close to midnight, I believe), asking how Bob's pain has been since we left his office, and to let us know he'd be available by pager all weekend, should Bob's pain increase to the point where he felt he needed to be admitted for pain management, just call (maybe because I just couldn't stop asking questions and expressing concerns about the surgery and all that's involved, and that I fear Bob's going down the same path we did over two months ago, with the increase in pain prior to surgery) . . . and 3.) another phone call tonight (Sunday), from the colorectal surgeon, just checking in, first to see why Bob wasn't already in the hospital, because he was going to stop in and see him but didn't see him in the admission records. I told him about the change in admission plans, and he said he's swing by on Wednesday, to talk to Bob. Does all this surprise me?

Part of me says "yes, I am surprised." These are busy doctors, with tight schedules and vacations to take and conferences to attend, patients to see and families of their own, yet took the time to call us personally, at home, to check in, ask questions, take a few minutes to listen . . . and a part of me says, "no, I'm not surprised." They're good doctors, doing their jobs. Either that, or their nurses have told them about Bob's raving lunatic wife who's been relentlessly calling the office all week. "Will you just call her, so she stops calling us?" I can hear them saying . . . maybe that's it . . .

So, Sunday night (1 a.m.), Bob's made it through another night, once again, with the help of this deep reserve of internal strength I've witnessed in him time and time again, for months on end, the likes of which I'll never know. He's toughed it out, as he wanted to, to be at home for these days prior to the hospitalization, to be in his house, with his things around, being able to putter around a bit here as he can, instead of having to go in early due to pain. One more day at home, and then it's back to Hotel U of M.