Days tick by here in Bethesda, one day folds into another seamlessly, can't tell when one starts and the other ends, can't believe it's December 2nd already. Bob's Giant Leg is ever-so-slowly improving, still gigantic, nearly twice the size of the other, still heavy and cumbersome (adds a good 15+ lbs. to his weight), still can't wear a shoe on it, which not only means his foot is not only huge and clumsy, but he also can't wear the AFO (ankle-foot orthotic), which means his right foot/leg is rather unstable, making PT and OT exercises especially challenging. But, the leg itself is "softening up," and the fluid is slowly starting to disperse (before, his swollen leg was so taut and hard, it felt like my fingers might puncture his skin when I'd lift the leg to help him into bed), and speaking of getting into bed, Mr. Determination is hoisting himself into bed these days—an impressive event to witness, and one of these days I'll try to remember to capture it on video—and the pain that started along with the clot has faded. In spite of the swollen appendage that doesn't seem to be going away any time soon, Bob perseveres. It's how he rolls . . .

Bob's doc ordered lymphedema wraps to be done on Bob's Giant Leg, a non-invasive treatment, to assist in the dispersing of the fluid. His doc believes that much of the swelling is not just the blood clot, but also due to the surgery and condition of Bob's right leg—that most likely lymph nodes were damaged and/or sacrificed in the extensive surgery, which inhibit the limb's ability to circulate fluids, and may be a permanent condition that he'll have to deal with. The treatment consists of wrapping his right leg, each individual tootsie all the way up his thigh, in 3 layers: a gauzy, sexy toe-less thigh-high stocking, followed by foam padding, then ace bandages. The compression of the wraps help to push the fluid back up into the body, to be recirculated and redistributed. This will be done three times a week, which makes getting showers in especially tricky, because we need to sneak them in before the wrap therapy and MIST therapy, and somehow in between multiple PT and OT sessions and the stream of doctors who vie for his attentions.

Penny and Jim came up today, went with us to PT, for the first time, ever, to see first-hand, how Bob rolls. A big f'n deal, you see, because Bob's been incredibly self-conscious about his therapies—a big ol' mixed-bag of frustrations, embarrassment, grieving, anger and god-only-knows-what else goes into each 1/2 hour of therapy, in spite of the progress he makes with every session he endures. Even having me there was tough for him, in the beginning; he didn't want me to see him in this condition, to witness how much his broken body couldn't do. So, finally granting Jim and Penny "permission" to attend therapy with him today was a big deal indeed. I could tell they were so in awe of all he can do, of the truly astounding progress he's made and how strong he's getting, but I can bet they were also thinking, as I always do when I see Bob in motion, that this body is so far removed from the man who used to hike state park trails and kayak lovely, lonely rivers and walk his dogs and go camping with his wife and strap his cameras to his back and head out into the woods for hours on end . . .

It's hard to explain the limbo state Bob's in now—in some ways, he's better than he was pre-surgery. Very minimal pain (and nearly narcotic-free!), he can sit and lie on his back indefinitely, but at the same time, he's light years behind what he was even right up to the surgery. Pre-surgery, he could shower and dress himself, he could get around the house, slowly but surely, by himself. He could get in and out of bed. All functions in his pelvis simply worked. Not so much, now. It's as though we traded one set of crap for a whole new set of crap, with new rules, new complications. And right now, so many unknowns still left up in the air, still trying to get all the follow-up appointments with all the specialists who have yet to see him post-surgery, to get the game-plan going for moving ahead. But, still, every day, in the midst of it all, there is tangible, breath-taking progress. Like getting himself into bed.

Bob's Physical Medicine and Rehab doc—a man who annoys the livin' hell out of me—says the most inappropriate things at the most inappropriate times, talks so fast as though his life depended on it, talks over everyone else, giggles like a schoolgirl at his own jokes—was in yesterday to tell us about a urology appointment/test he had set up for Bob at the U, something called a urodynamic study. It's a series of tests to study the functions of the urinary tract, to help determine if there's any nerve damage, function impairment, etc., the extent of it and what should/could be done to treat the condition(s). He goes on and on to say that it's really no big deal if Bob ends up having to self-cath himself if "things" don't work any more. "People do it all the time! They can go on international flights! They can go hiking! They can go biking! They can do pretty much anything they want to, so I hope you're not freaking out that this is a big deal or anything, if that's what they find out—"

I look at Bob, who's looking at his hands in his lap. Doc R continues, "I see patients all the time who have to do this! They get it down to a science and then it's nothing! Actually, self-cathing is actually healthier, because you can drain your bladder much better, because you know, we males start to lose urinary capacity as we age, due to enlarged prostates and such, so, if you end up having to do this, it's really no big deal! I hope you don't think this is the worst possible thing, because it really isn't—" he actually stops his run-on sentences to look at Bob.

"Are you following what I'm saying to you, Bob?" Bob barely nods his head, still looking down. "You really need to find it, in your heart, to be okay with this, if it's what ends up happening. I mean, somehow, you just have to—" Bob continues to look at his hands in his lap, never once looking up to make eye contact with Dr. R, and I can't stand to listen to him talk up self-cathing like it's, well, like it's no big deal.

I interrupt. "I'm sorry, Dr. R, but with all due respect, I don't think you have any idea of all that Bob's gone through this past year—not a clue. And now you come in here, all happy-go-lucky, and him it's really no big deal! that he might have to shove a straw up his penis every time he has to pee from now on. Easy for you to say, so easy for all of us, to tell Bob that all of this crap is no big deal, that it'll all be okay! because we're not the ones living with the endless life-altering "no big deals" . . . I'm sorry, but right now, that kind of information isn't something you dump on someone who's been through all Bob's been through this past year, and expect him to "find it in his heart" to accept it, just because you, who will likely never have to shove a straw in your penis to take a piss, tell him to . . ." And besides, something like that shouldn't even be discussed, until after tests are done, till more is known . . .

I can feel my ears burning and hear my voice cracking, but Dr. R is suddenly, finally, silent for several moments. "I see. I see . . ." he eventually says, and for the first time, I think maybe he does. Or maybe it was just that we were interrupted by the OT who had come to do the lymphedema wrap on Bob's leg. Dr. R stands, reaches his hand out to Bob and says, "Well, let's wait till we get the test results to finish the conversation, shall we?" Bob nods and Dr. R quickly excuses himself.

"I'm sorry," I say to Bob. "I just hated to sit here and listen to him say all that shit to you like that, the way he did. It was so insensitive, so truly obnoxious . . . " We weren't able to talk much about it, since his wrap was about to begin. . . just one more thing . . .

Warning: Emotional Rant of a Completely Unrelated Topic Ahead! Turn Around—NOW!!!

So, my latest hobby has been spending endless hours of the past few weeks on the phone and sending e-mails to COBRA (well, technically, to an out-sourcing company called CBIZ, who administers the COBRA plans for Bob's former employer) and Social Security, begging and pleading for an extension for Bob's coverage. His coverage with COBRA goes through April of 2011, but being the jacked-up system that it is, we missed the deadline to request the extension, even though he fulfilled the other two "rules," and still has over FIVE MONTHS LEFT OF COVERAGE!!! I mean, c'mon! I could see if it were ready to expire but a half a year left and it's too late to ask for that extension???!!!!! DOUBLE-EWE! TEE! EFFF! (like how I'm trying to disguise my foul mouth here? Believe you me, it ain't easy)!!!!!! Incidentally, Bob had asked about it, months ago, back in the spring after his first heart attack, when he realized he just might be needing that extension, but was told he wasn't eligible, because he hadn't been deemed disabled by SSA yet. Penalized for being too proactive. . . Soooooo, in the time that we're waiting for SSA disability to go through, Bob has another heart attack, countless critical setbacks, weeks in and out of the hospital, eventually the 13 hour surgery followed by months recovering in Bethesda. Somewhere, in the middle of that, I should have stopped all that I was doing, rifled through Bob's COBRA/CBIZ info and figured all that shit out . . .

So, now it's now December (well, was November when I started all this). Still, much longer than 60 days past The Date . . . I was told by CBIZ to still send the SS disability letter, which I did, then was told it wasn't the right letter, didn't have the right dates on it. Called SSA office, was told there is no other letter and they have no idea what I'm talking about, but will send another copy of the letter and add the dates CBIZ is asking for. Send it in, only to be told, sorry, can't grant the extension because it's past the 60 day mark . . .

Next option: contact Preferred One, Bob's provider, to see if he's eligible for a "conversion plan," which means that after the COBRA period is up, he may be able to convert the plan to an individual one with Preferred One. Several phone calls later, I'm told he is eligible, but they can't tell me what kind of policy it will be or how much the premiums will be until April . . . they suggest calling CBIZ back, ask to speak to a supervisor who may be able to make an exception in Bob's case . . . call CBIZ back, talk to a supervisor, who asks me to have SSA send another letter that states the specific date Bob was deemed disabled, because that's the date they are looking for. I tell her the letter I sent already had that information on, and SS said there is no other letter they send out . . . But, I call SSA anyway, the (believe it or not) very nice woman—sooo wish she had a direct line—on the other end once again told me there is no other letter than the award letter, but asked me to read to her, word for word, the e-mail I received from CBIZ, stating exactly what they want, and she'll send a letter stating that information exactly. I call CBIZ supervisor back, tell her what I'm told, she said in the meantime, she'd already contacted Bob's old employer who told her that they won't make any exception to extend Bob's CBIZ coverage if we didn't follow "the rules" to the letter. . . it's only by the grace of God I still have hair left on my head and the windows of my house haven't been shattered by flying chairs . . .

I know you all haven't following a word of this rant, and that's totally okay, but I just need to get it out because I just have to, or I will implode . . . the internet version of scream therapy. Because along with all the awful, awful shit that goes along with a long-term critical illness, this kind of shit just has to get dumped on the pile, just in case all the other shit isn't enough . . . and I know it will all work itself out, that we just have to keep plugging away, work on figuring it out, and we won't be without insurance, and the world isn't going to end just because of this stupid mess . . . but sometimes, just once, I'd sooooooo love for something to go just as it should. Just once, 's all I ask . . . Okay. Pity party over. Time to wipe the tears on the back of my dirty hand, pull up the big girl panties and move on. If you made it this far in the blog, you deserve a HUGE hug from me next time I see you. . . bless your sweet heart for listening. I feel better. Much.

xxoo j