Sunday, February 20, 2010 11:19 PM, CST
I am remiss in updating Scott’s status. Generalissimo Francisco Franco may still be in the hospital (my diehard SNL watching friends might remember that era), but Scott was discharged on Tuesday, February 9th. In fact, my friend Wendy Kizzier had just arrived with a fabulous meal and had even poured two glasses of wine when Scott called to say they were discharging him. Until his call, for almost 5 whole minutes there was a calm in our household. By 7:30 I was at Walgreens to fill his prescriptions, and by 8 p.m., was reduced to tears when the pharmacist insisted that his prescription insurance had been cancelled so the bill would be $30 for one medication and $8750 for the other. “How would you like to pay for that?”
I confess that the ensuing few minutes, while the pharmacist “made some inquiries” weren’t entirely bad – pretty close though. Johnny Depp was on the cover of GQ. He kept me company. Early the next morning an insurance rep helped me straighten out only the latest insurance fiasco, confirmed that it had not been cancelled, and gave me an explanation that I was not yet sufficiently caffeinated to understand. In the midst of my telephonic 19th nervous breakdown, we bonded over the fact that she is convinced that Johnny Depp was the MBHA (apparently, I should have known that stood for “most beautiful human alive,” which I agreed with only because she was so helpful and it is more likely than not that I will need her assistance in the future). And, as our Johnny Depp impromptu fan club was forming Maya displayed the first symptoms of a 24 hour stomach flu, all before 6 a.m.
At one point we thought that we had defied statistics and it was simply a 6 hour stomach bug, so a friend took her to school. No such luck. 24 hours really means 24 hours, and that last few hours at school did not earn me any mommy points with the school’s maintenance staff.
Scott’s recovery and life at our house seemed to continue on a similar trajectory until the weekend when the festivities of my step-sister’s wedding swept us all up. Michael Weil and Dannielle Toner are two wonderful people, lucky to have found each other, and our lives are all richer and fuller with the addition of Uncle Mike and his family. Maya was an adorable flower girl along with her new cousin Jessica and the whole event was announced in the New York Times, which I didn’t discover until 4 days later when I had time to read the Sunday paper:
Scott missed most of the festivities but made a brief appearance at the wedding, dapper in his tux, with the tubes of his abdominal drains threaded under his cummerbund and the actual drains in each pocket.
His follow-up appointment went mostly well, except for some damage to his dignity and the not surprising news that he needs to gain weight. Apparently, he was informed, he has been wearing his orthopedic compression Spanx too high. His doctor informed him that it should rest at the “bra line.” As much as I have tried to convince him that this is an expression women use and not indicative of her mistaken assumption that he cross-dresses, his manliness, like Lindsey Vonn’s shin, seems to have been badly bruised. To add to the humiliation, his doctor handed him a pamphlet for Design Veronique, available at http://www.designveronique.com/ (which could never be confused with the type of lingerie for women, or even men who dress like women, but is covered by insurance), and suggested that he may need to order more orthopedic Spanx, since he will be wearing them for quite some time. As we know, Lindsey Vonn made quite a comeback. Scott, however was informed that he is off the slopes for the remainder of the season. His next set of scans will be in late March. Between now and then he is sleeping, gaining weight one bowl of cereal at a time, and would enjoy company. Just call ahead to make sure he is dressed appropriately….
Monday, February 8, 2010 11:30 PM, PST
I am not quite sure exactly when our life started to feel like we are perpetually stuck in a lost South Park episode, but it did and we are. It was probably somewhere between Scott’s 2nd and 3rd room change, or when he discovered that he no longer had a belly button and lamented losing forever the opportunity for a piercing there Yes, the plan was that he would be home on Sunday, in time to watch the Superbowl. Yes, it is nearly Tuesday and yes, the Toyota analogy is hitting just a little too close to home.
Scott’s first room change had to do with the amount of dust being stirred up by construction in the hospital’s addition. He, along with everyone else on his floor, was evacuated, seemingly randomly throughout the hospital. His new roommate was an unfortunate pairing – Scott was suffering from epidural induced hot flashes. It might have made more sense to move him to the maternity ward. In any event, that room lasted just a few minutes less than the amount of time it took the facilities department to send up a fan. Scott spent the next 11 hours in room number 3, deep into menopause like symptoms and without a fan (all the while I did my best David Copperfield imitation, complete with fingerless gloves, trying to ignore the fact that the heat was off and it is early February) . By the time he and his fan were re-united the acute pain team had decided it was time to remove the epidural, so he was cold again, but in a private room.
Then, somehow it was determined that the person across the hall was too radioactive. Harkening back to the months that Scott was radioactive and I slept next to him, I am wondering how much is too much. But, in an effort to avoid a re-enactment of the horrible hospital Silkwood shower scene, he was relocated to room number 4.
How did Silkwood morph into Southpark or vice versa? As anyone who has had GI surgery knows, they won’t let you out until your digestive system wakes up. So, like a Toyota accelerator, Scott’s digestive tract seems to be stuck and no factory retrofit package is yet available. In spite of that fact that he is on a clear liquid diet, an officious dietician brought him two handouts – one on how a high fiber diet can help constipation and another on how a low fiber diet can achieve similar results. How he didn't lose his temper is really beyond me.
My still brilliant lawyer husband, who early this morning was able, off the top of his head, to describe the significance of an F/A-18D fighter jet (either it’s a navy multi-mode plane, that combines a fighter -- the "F18" with an attack aircraft the "A18" -- or he just made it up and I believed him) is now calling me hourly to describe how close to possibly passing gas he might be.
When he does come home, he will be sporting the equivalent of orthopedic Spanx, for several weeks. I told him this apparatus looks like what Lady Gaga will be wearing when she performs at the Superbowl 25 years from now. Oddly, he wasn’t amused, or he was just too drugged to be insulted. And frankly, it is what the members of the Who should have been wearing when they performed during Sunday’s Superbowl half-time, which we caught briefly as Scott did laps with his IV pole. (Whether they should have even been allowed to embarrass themselves and whether any amount of green laser beams could have covered up their cringeworthy performance is another topic – one that might have made Scott laugh, so was therefore off limits).
Saturday, February 6, 2010 12:24 AM, CST
In what now seems like a most unfortunate article in the Washington Post, Ceci Connolly wrote, on Friday, June 3, 2005: “The inspiration for Virginia Mason's newfound approach to cancer care came from a most unlikely source: the assembly line at Toyota Motor Corp. Like the Japanese automaker's plants, the glistening new cancer center here was designed around themes of high quality, super-efficiency and putting the customer first. Errors are embraced as learning opportunities, and every one of Virginia Mason's 5,000 employees is encouraged to offer ideas. According to hospital executives and some industry analysts, the management principles that made Toyota the world's most successful car company could have similar results at Virginia Mason.” Ouch. Luckily, Scott didn’t have a sticky accelerator and as far as we know, no errors were “embraced as learning opportunities.” In fact, the whole Toyota concept seemed to have been kept under wraps today.
What was embraced, however, were many back issues of “Trailer Life” magazine. Its seems that for every copy of Southern Living found in the M.D. Anderson surgical waiting area there are at least two even older copies of Trailer Life. My decorative mint julep decorating skills may be fading into the medical past, but I swear to god, I now know how to make fried chicken gizzards at home without the benefit of a commercial fryer (a sprinkle of Mrs. Dash in the batter, apparently, is the secret ingredient), you can also use Drake mix and beer for the coating and fry at 375 till a golden brown for a pretty good home cooked version, but on the road Gizzard City south of Lansing, MI off I-69 has the best ever chicken gizzards. And, if that isn’t frightening/enlightening enough, after 6 hours of not much else but a giant computer screen reporting the status of each surgical patient by number (Scott being #1386), in a 60 second rotation, if not for the generosity of our friend Lavinia Touchton, who brought me much needed lunch and distraction, I was starting to think that the key to our happiness might just be eco-friendly living in a Lance Camper (interview with wilderness expert and survivalist Brian Brawdy, December 2008) or maybe a brand new Keystone Raptor, whatever the heck that is anyway.
Thanks to Lavinia’s timely intervention, Maya and I are safely at home, with a basement and foundation beneath us. Scott’s surgery went as planned except that his surgeons admitted to pretty much having to improvise, lacking experience with such a thin fat layer. Typically they place 4 drains for this type of surgery but guessed that 2 should suffice.
His surgeons have warned him (and me) that he has a particularly painful recovery ahead of him, but for now, as long as he doesn’t inhale or exhale (or laugh), his epidural is doing what it needs to do. If all goes as planned, he will watch the Super Bowl from Virginia Mason and return (not to a Keystone Raptor) to our conventional, mint julep cup-free home, sometime on Monday. Thanks to the generosity of our friends, it is well supplied with good food (and wine) to nourish our bodies and spirits.
Sunday, January 31, 2010 11:15 AM, CST
When Maya woke up on Saturday morning she asked Scott to check the score of the Bush school basketball game last name. Revelation – Bush has a basketball team. Yet another activity that completely eluded my attention. At the time, I was on the dining room floor updating our unreimbursed medical expense spreadsheet for our 2009 income tax return. Apropos of nothing except what a crazy place we still find ourselves in and why healthcare needs to be reformed, I am at just over $54,000 in co-pays, unreimbursed, not covered, travel, parking, mileage and other miscellaneous medical expenses. This doesn’t even account for the stuff that isn’t deductible (over 7.5% of one’s adjusted gross income to be precise), like Scott’s experiments with black raspberry powder, Chinese herbs, Nestle supplementary nutrition, aromatherapy and other varieties of near-voodoo, as well as the Barbie Band-Aids and all of the nonprescription medication we all took in 2010.
In any event, while I was sifting through the detritus of cancer, Maya asked Scott how you pick the team you want to win: “is it the better sounding name, the better looking athletes, or what?” It should be profoundly obvious that sports don’t make it onto the radar at our house, so it is surprising that she knows enough about the topic to even ask these questions. But it hit me -- my professional life right now is all about how I can stay at the top of my game and at home my job is helping Maya and Scott get up from the bottom of theirs. Both jobs are more than full-time. And what does “top of my game” mean when the rest of the family has hit bottom.
Somehow, during the evenings that Scott was trying not to vomit and Maya was asleep, I managed to write an article that will be published in two parts in July and August this year. The estate tax expired for one year on December 31, 2010, which has propelled my law practice into frantic overdrive to deal with the challenges caused by this complete Congressional failure and irresponsibility. Yet, Congressional inaction has also created a tremendous and exciting tax planning opportunity. And the hard-charging lawyer part of me wants to take advantage of those opportunities for my clients and to participate in the nationwide professional collaboration that is going on to understand and respond to those opportunities. I found myself somehow volunteered to be on a State legislative drafting committee, which is the last thing I have time for. But legislative drafting is my guilty pleasure (along with Us Magazine in the grocery store line), and I have been able to participate by conference call, which allows me to multitask in a multitude of ways and accomplish things that otherwise wouldn’t get done – dig below the emergency top layer of my in box, drink coffee while it is still warm, eat lunch, and look out my window (in addition to world class art, including the giant Calder, from time to time I am treated to a platoon of bicycle cops training in the Olympic Sculpture Park, also a sight to behold if not a bit distracting). Yet, when Maya and Scott are discovering their own new personal lows it seems inappropriate to seize the opportunities that are so tantalizing in my professional world. So staying at the top of my game has morphed into resisting the temptation to nap face down on my desk, dealing with the most recent irritated client and hoping that they will stick with me until I can get back to the former version of myself who prided herself on being able to exceed expectations.
To say that Maya has had a rough school year would be a gross understatement. Among other things, she was recently diagnosed with a potential hearing disorder. So, we are adding yet another specialist to our cadre and adding to my motherly sense of guilt for every time I got irritated when I asked her to do something and assumed she was simply ignoring me. This week Scott found out that he is severely anemic – which can be treated with a series of iron shots and supplements – but troubling as to its cause. He also broke a filling that at first needed only a crown but on Friday when he went to have the crown seated they decided he also needs a root canal - tomorrow. He has a somewhat short timeline because next Friday, at 6:30 a.m., he is scheduled for a Multilayer Reconstruction of Abdominal Wall Defects with Acellular Dermal Allograft and Component Separation. So, he has the unusual privilege of going straight from the endodontist following his root canal back to the dentist to seat his crown, and get it all wrapped up in time for him to get off the Tylenol and start his pre-op enforced fast and “bowel prep” prior to Friday’s extravaganza. Not the end of the world by any means, but he hadn't planned on spending likely his last day of skiing for the season sedated by Valium and nitrous oxide, plugged into an Ipod, which, come to think of it, doesn't sound that bad.
The best thing we can say about his upcoming surgery is that it will be in Seattle and he gets an epidural, so I get to sleep in my own bed and Maya will have to endure one less disruption. Scott will be in the hospital for a couple of nights. We hope to have him home by Sunday. (But he has made clear his preference, if offered a Sunday afternoon discharge instead of Sunday morning, to stay until Sunday night and watch the Super Bowl from a hospital room.) He expects a 6-8 week recovery, the first few weeks of which will be spent not far from our living room couch, and would welcome visitors. Maya and I would welcome a home cooked meal. Actually, we would welcome a meal, period. And we would all welcome some sleep and sanity if anyone has any to spare.
We expect Scott’s surgery to proceed without complication, but I will provide an update on Friday as his general anesthesia wears off and epidural gets titrated to quash the pain, a routine we have gone through enough times that it has become a familiar and bizarre routine complete with our own in-jokes that embarrass the heck out of me but endear him to the nurses, the orderlies and the semi-conscious patients within earshot.
