Saturday, November 13, 2010

Have I said this before: "It's always something . . ."? if so, let me reiterate . . .

Subaru is sold, house is up for sale. I listed the Sube on CarSoup and sold it in two days, to the first buyer interested, a souper-douper (ha—get it?! CarSoup? Souper-douper? ummmm . . . nevermind . . . ) nice family guy looking for a reliable used car for his soon-to-be-driving twin daughters. Had the Potential Buyer (PB) meet me at Bethesda for a test drive on Friday—I told Bob, as I headed out to meet the PB, to call the police if I wasn't back in an hour. The fact that the PB showed up with wife and kids in tow did little to subdue the apprehension (read: outright terror) that gripped my heart as I got into the car alone with this complete and utter stranger for the test-spin, despite my outwardly chit-chatty demeanor. I mean, who knows—the wife and kids could be in on the gig . . . I took note of the make, model and license plate number of their vehicle as we took off and intended to text the info to Bob.

Fortunately, I came back from the test-drive before I could finish the text (I'm waaaay bad at texting, peeps), in one piece, in the front seat (not bound and gagged in the trunk) and the car was sold the next day. I am forever grateful I wasn't dismembered by a serial-killer-family and grateful the family, who were truly nice as all-get-out, loved the car and made the whole process about as painless as a private-party car sale could be. I am confident they'll have at least as many, if not more, years of great service from my cute li'l Sube as I did.

I likely could have sold the Jeep as easily; even though the Subaru got better gas mileage and was paid off, the Jeep is Bob's vehicle, and in my heart, I just couldn't sell it. I am still confident that one day in the not so distant future, he'll be behind the wheel again, and when he's ready, I want his car to be waiting for him. I'll sure miss those heated seats, though . . .

And, can I just say that I am beyond grateful for Penny and Jim and all the hard work they did for us earlier last week—got the decks stained and the garage cleaned before the first winter storm of the season hit. No way I could have gotten those projects done without their help, not without sacrificing my visits to Bob. House went on the market officially on Friday, so I've been cleaning and purging like a madwoman to make the joint look like it's oh-so natural for us to live in such pristine digs. I'm hoping the good vibes of the Sube sale will carry through to the house . . .we just need that perfect artist/Unibomber/meth lab-type buyer to see our cute li'l house in the big woods and deem it perfect for his/her artistic or other endeavors.

There has been talk of Bob's discharge from Bethesda to a short-term acute rehab unit sometime this week, but that plan may be on hold. A clot was discovered in his right leg this morning (a deep vein thrombosis, or DVT, as it's called) which has been the source of recent increased swelling, pain and discomfort in the right leg. He skipped all therapies today, because of the discomfort, as the immense swelling does inhibit movement to a degree. Right now, his right leg is at least double the size of his left.

I'd noticed it yesterday as I was helping him get ready for a shower. "Holy shit! Your right leg is HUGE!" was pretty much the gist of my astute observation. I called Bob's nurse in to take a look, pointing out that it had just been his foot for the past week or so that had the swelling, but now it was his whole leg. She put in a request for the weekend doc on staff to come in and take a look. The doc stopped later, looked at Bob's leg, and recommended Lasix (a diuretic) and more fluids (seemed contradictory to me, but she said it was a delicate balancing act—to reduce the swelling but to keep Bob's fluid intake up, as he's supposedly been dehydrated, as well). This has happened numerous times throughout the past year, but never this bad. I asked if perhaps an ultrasound should be done, too, as this looks far worse than any other swelling that he's had in his lower extremities in the past. She ordered one for the morning, and left us with the assurance that they'd keep an eye on the leg overnight, but that she was pretty sure it was simply lymphedema, a condition caused by damage to the lymph nodes of a limb, which likely happened with Bob's surgery. If the lymph nodes of his right leg were damaged or removed during the surgery, fluids that are normally filtered out of the body via the nodes end up with nowhere to go, hence the swelling.

So this a.m., an ultrasound was done and by the afternoon, the NP who works very closely with Bob's primary doc told us it's actually a blood clot that's causing the swelling and as a result, his blood thinning meds have been adjusted to treat the DVT. I about blew a gasket over that (whatever the hell that means), telling her that NO ONE messes with Bob's meds except his cardiologist at the U, who has saved his life not once but twice and knows his cardiac history intimately!!! And yes, I started crying, again, but no f-bombs, this time. I do love his NP—she's an amazing woman and I sometimes forget she's not a doctor, because she's so thorough, so knowledgeable and confident, yet very compassionate. I apologized over and over for overreacting, but I've seen—more times than I can count—seriously adverse outcomes when doctors, who don't know Bob's history intimately, start messing with his meds and treatments. . . she assured me that what they are doing is even more effective at treating blood clots than just the Plavix and aspirin, and that she'll make a call to the U in the morning, to consult with Bob's cardiac team, as I requested, as well. She also assured us that this sort of thing is so common at Bethesda, because so many patients aren't very mobile (and factor in Bob's cancer, which has also affected his clotting ability); therefore, blood isn't being circulated through the body as it normally would. As a result, it pools in the limbs, gets thick and has a higher risk of clots forming. She continually reassured that he will be very carefully monitored and treated . . . once again, such a delicate balancing act, to treat one condition while not upsetting the status of another . . .

I'll hopefully get a chance to talk with Bob's doc tomorrow and have more details about this newest setback. It's a hard position to be in, to tell Bob once again, that hopefully this is just a small set-back as the NP said, that we simply have to realize that that's how this path is going, a few steps forward, one step back . . . but for the love of God and small children, this path really needs to take a different turn sometime soon . . . I keep trying to assign an "end date" for all this shit, or at the very least, to finally be able to say we've had one really "Good Day," and are truly seeing the pinpoint of light at the end of the proverbial tunnel. Not just an "okay day," or a "not too horrible day," or one Good Moment, but a real, honest-to-goodness entire Good Day. But I forget that this isn't in my control, no matter how badly I want it all to please, please, please finally end, to have Bob home . . . to really, truly feel he's on the safe and solid road to recovery. But, right now, "it" still just ain't happening. And it's getting old. Sofa king old . . . my hardest job is to continually remind myself that all this shit didn't happen overnight, and won't get "fixed" overnight. . .

I've included a very short clip of Bob walking with a cane at PT. This is the stuff that makes me simultaneously elated and heartbroken—it's a glimpse of how far he's come, but how far he has yet to go. It's not great quality, just warnin' ya, as I was pushing his wheelchair and trying to capture a few moments' of video at the same time. He was especially tired this day, and couldn't walk very far, so I had to put the phone away and help him back into his wheelchair. Thus, please excuse the poor videography. . . the line running from Bob's back is the tubing from the wound vac. And, you can't tell from this clip, but his PT has a Spock death-grip on the gait belt around his waist, because if she were to let go, he'd go tumbling to the floor . . . he's very self-conscious about me taking pictures, video, etc. of him, and I don't blame him, but at the same time, I want to capture, as best I can, his progress, his determined spirit . . . maybe at some point, he'll want to see, from our point of view, his own astounding recovery. What he feels right now isn't so amazing, but what I see, despite the setbacks, is breathtakingly so . . . xxoo j

7 comments:

  1. So many things swirling through my heart and head after reading this post. I guess suffice it to say that I love you both and am very glad to have seen the little video clip of Bob. Thanks, Jen, for advocating (once again) and asking for the ultrasound. I'm no expert on lymphedema, but I think it generally sets in a little sooner after surgery than what is it... 10 weeks or so now? Anyway, thanks for your tireless care, love, concern, and advocacy!

    I shall make a small sacrifice to the real estate gods today (maybe in the form of that box elder bug stuck in the screen of the kitchen window...) in the hopes it will help your house sell quickly and painlessly.

    Nancy

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  2. I'm glad you found a "good home" for Leslie! Your video was great!
    Hugs and love,
    Jul

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  3. The walking looks great!! Even with the death grip. :-)
    I too will make a sacrifice to the real estate gods for a quick sale.
    xoxoxo
    -Jodi

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  4. Go Bob GO! The video is so exciting! We will continue praying for Bob's recovery, and progress.

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  5. The video brought tears to my eyes, Nenni. So good to see him trying so hard when it's probably not easy to do. Please send him my love, and to you, too. We'd love to visit as soon as Otto is a few weeks older. I'd love for him to meet Uncle Bob.

    Love you both to the moon, and I'll send good kharma that the house is sold soon.
    xoxoxox
    Jill, Jade, Amelia and Otto(man)

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  6. Thoughts on the post;
    1. I've heard some people say they carry a copy of there entire medical history with them if they are going in for an extended medical stay. This would probably be helpful for Bob, but you may need a Chiropractor after carrying it around.

    2. When I awoke the morning after my Grande Mal seizure, my Dr. came into my room and said,"You have a brain tumor, we will put you on meds to control the seizures, you will need to see a specialist, and if you need to come to the hospital in the next two weeks, you will need to see another Dr., I will be on vacation."

    Jenn, you are the only person not getting paid to try and keep Bob alive, yet you know more about his medical history then anyone else. Feel free to babble at will, you are more then qualified. I hope the Dr.s and Nurses learn something from you!

    We are with you both

    Ronda, Corey and Zane
    P.S. Have a nice Thanksgiving, AND a Happy Birthday!!!!

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  7. OMG on the walking video!!!!!!!!! OMG OMG OMG! Bob's a fucking STUD. Holy cow -- rocked my world. Wasn't expecting to see that already -- SO PROUD!!!!! xoxooxo

    Gwen (AKA Ginger!)

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