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Saturday, September 14, 2013

Dispatch from Casa la Brilliant, Part Deux, or "Why are all these children wearing scrubs?"
Posted by Jill | 7:04 AM
When we last left the valiant Mr. Brilliant, he was facing a carotid angiogram and a near-certain throat cutting. So it was with great trepidation that on August 20, we headed in at 4:30 AM to Big Prestigious Hospital, where some guy we've never met before would slice an incision in Mr. B's femoral artery and run a catheter up to his brain, which is sort of like driving to Florida by way of Albuquerque (unless of course you live in Albuquerque).

First we meet a bunch of pretty nurses, who wheel in a bunch of machines that go "PING!", which we're getting used to by now. The waiting area for this procedure is sort of cavernous, like an old 1970s nightclub turned into a radiology ward. Some very nice nurses come in, do some stuff with the machine that goes "PING!", stick some needles into Mr. B., which he accepts with a minimum of fuss, as he is starting to really identify with that old Esquire cover of Muhammad Ali. Then, in walks the neurology fellow, an Indian guy who is without a doubt the most gorgeous man on the planet. The nurses titter when he talks to them because he is so charismatic that a chorus of angels sings when he walks into the room. He looks like he just walked off the set of a prime time hospital show and thinks he's prepared to be the real thing. He looks maybe twenty-five. He does the chatty thing to put the patient at ease, and Steve finds out that he's a bass player, which gives them Something In Common, and so Steve starts to relax just a bit. This is good because he does not notice how I am gazing at the most gorgeous man on the planet. Then in walks the neurosurgeon, a Nice Jewish Boy with the serious and thoughtful demeanor of the president of the college chess club. The nurses don’t titter when he talks, which baffles me because he’s sort of cute too even if angels don’t sing when he walks into the room because he is clearly a Very Serious Young Man. He looks maybe nineteen, but carries himself with authority, and does such a good job of explaining the procedure so that I start to feel more comfortable leaving Mr. B.'s carotids in Dr. Chess Club's hands. Dr. Chess Club and the Most Gorgeous Man on the Planet wheel Mr. B. off for an hour of God-knows-what, and I hang around for the next two hours, trying to work and hoping mightily that these teenagers in scrubs and white coats know what the hell they're doing.

About an hour later, they bring a much-relieved Mr. Brilliant back, who says it wasn't nearly as bad as he expected, and Dr. Chess Club tells us that he had already scheduled Mr. B. for the full Dexter Morgan on Friday, but much to his surprise, despite Mr. Brilliant's penchant for cheesecake and the burgers served up at the Dog House Saloon, there IS no plaque to be scraped out of Mr. B.'s carotid, but instead, he is one of the "lucky" one-in-two-million with "classic" moyamoya. So three days later, surgery will still take place, and it is brought to you by the letter "E" -- not endarterectomy, as originally planned, but instead an EDAS procedure, which some kind person at some point set up as an acronym for encephaloduroarteriosynangiosis. What they do is they take the temporal artery in the temple and suture it to the covering of the brain, and over time, new blood vessels grow so that the temporal artery starts doing the big job of feeding the brain. I guess it's kind of like laying sod on your lawn in that you put it on the surface and over time it grows roots. If you have a strong stomach, here is a slide with a visual representation. Or if you have a less strong stomach, this. And he will have to have the other side done a few weeks later because he has this on both sides. The good news is that these bypass operations are nearly always successful in dramatically reducing the risk of stroke to nearly that of someone without this.

So a few days later, we head in once again at 4:30 AM to get there at 6 for BRAIN SURGERY. Now I've been pretty competent up until this point, but here I am, driving him into a hospital where a bunch of, well, kids, really, are going to do BRAIN SURGERY, and the Runaway Freight Train of Dread starts going and I start wondering what this parade of children in scrubs, little paper caps, and white coats who look like they are starring in a hospital show on the WB are going to hand back to me after they get done with Mr. B's brain.

At this point, Mr. B. is scared shitless, I'm scared shitless, and the usual pre-op bullshit seems kind of surreal. There are more machines that go "PING", more needles, another bedside neuro test with the chorus of the Announcer's Test, and then the anesthesiologist comes in. He looks maybe twenty-one. So if Dr. Chess Club is the president of the college chess club, the anesthesiologist is the guy from whom all the college kids buy their pot. Every third word out of this guy's mouth -- and please remember that he is the ANESTHESIOLOGIST, and anesthesia with moyamoya patients is tricky even when you are correcting it -- is "awesome" or "dude". With his blondish hair peeking out from under his little scrub cap, I am already thinking of him as "Spicoli the Anesthesiologist," and I am half-expecting him to start passing around joints and playing "Scarlet Begonias" through the PA system. But this demeanor makes him someone that Mr. B. would enjoy hanging out with, and they chat amiably about guitars and kung-fu. Mr. B. seems to relax a little and I am again starting again to think we somehow took a wrong turn in this building and mistakenly landed on the set of a hospital show, only now it has a name, and it is either "Abercrombie and Neurosurgery Medical Center" where all the doctors and nurses are portrayed by people from Judd Apatow movies and "Gossip Girl", or maybe it's "The Big Lebowski: The Early Years", in which we learn that Jeff Bridges' character used to be an anesthesiologist until he started hitting too many White Russians.

Then Dr. Chess Club comes in, a Very Serious presence after Spicoli the Anesthesiologist, and explains the procedure again. This is where the internet is a physician's worst nightmare, because I've done lots of homework by now, and from what I've read, a more invasive procedure called an STA-MCA direct bypsss is the preferred procedure, and what Dr. Chess Club is doing is called EDAS, which is an indirect bypass. This creates a deadly combination of "Caregiver Who Knows Enough To Be A Pain In the Ass" and Intelligent question, but I frame it as "just out of curiosity". To his credit, Dr. Chess Club is a good sport about this, and explains that they do the direct bypass with little kids who are having many strokes and with adults when they have an aneurysm or an AVF, which Steve does not have. This reassures me, because I have realized that as we have escalated the neurological tests, this whole thing has started to remind me an awful lot of Nate Fisher from Six Feet Under, though thankfully I have not heard Mr. B. say "Narm" at any point. Anyway, it's pretty clear that Dr. Chess Club may look nineteen, but he's done this before, and the whole thing is for better or worse sort of inevitable at this point. Later on, I read Dr. Chess Club's jaw-droppingly impressive CV, with honors all over the place and a list of publications as long as your arm -- all this and he's only a year out of residency. That gives me a bit of pause, but then I think how lucky we are to have Dr. Chess Club as Mr. B's neurosurgeon while his bedside manner is still that of competence, confidence, and knowledge but also kindness and patience, before he gets older, realizes he's a hotshot and becomes the asshole that, alas, is probably his destiny.

At around 8 AM, they kick me out of the prep area, and I spend the next four hours chasing down available electrical outlets, because I am working during all of this, trying to get a project out while he is in surgery. This is a good thing, because otherwise I'd be thinking about this KID cutting into Mr. B's skull and freaking out.

Finally around 12:30, Dr. Chess Club comes out, which gives me a perfect excuse to get off the phone with the manager of the programmers who are helping with my project. (Note: Saying you have to speak urgently to a NEUROSURGEON!! is a good way to get off of phone calls.)

Dr. Chess Club tells me everything went well, they are bringing him out of anesthesia and taking out the breathing tube, and they will let me know when I can see him. When I finally get to see him about an hour and a half later, he is in ICU with 157 tubes coming out of him. He's not able to speak because the breathing tube has made his throat sore, he's utterly miserable, and I stay only a few minutes before going home because it is 3 PM and I want to beat the rush hour and there really isn't anything I can do for him other than let him be so he can rest.

The next day is Saturday, so the traffic isn't bad at all. I feel a sense of dread when the visitor pass is for the aame ICU as the day before, but when I get to Mr. B's room, he is feeling much better, is sitting up in a chair and eating an omelet and blueberry pancakes. He still has 157 tubes sticking out of him and a catheter, which is surprisingly un-painful, and I remind him that this is how a catheter is supposed to be, not the way the clock watchers at the outpatient surgery center did it after the Butcher of Paramus did his bladder procedure in April. One of the residents comes in to check on him. She is a stunning young woman who gives the impression that she'd love to stay and chat but she has to go strut down the runway in the new Stella McCartney bikini collection (if there even is such a thing). I am now thoroughly convinced that this really IS Abercrombie and Neurosurgery Medical Center. He talks to her about the stinginess with painkillers during the first night. (This is something we will have to deal with when he has the left side done, and I am thinking I may just have to camp out in the ICU overnight that first night next time so I can go all Shirley MacLaine on the nurses if I have to.)

Abercrombie and Neurosurgery Medical Center is very nice in that they have valet parking that costs no more than parking in an independent lot. The parking guys are very nice to me because they have figured out that the fat middle-aged Jewish lady in the beat-up Corolla gives $5 tips while all the assholes in their Escalades give them a buck. On Sunday, after I turn over the car to the smiling parking attendant, Mr. B. is still in the ICU, but in a bigger room with a water view. The neurosurgery resident on the ICU unit that day visits. He looks about fourteen and comes across like a teenager dressed up as a surgeon for Halloween. He lacks the authoritative demeanor that Dr. Chess Club has. Mr. B. isn't as good at remembering names as I am, so we agree between ourselves to simply refer to him as "Doogie Howser" in future, should it become necessary. Doogie is under the impression that Mr. B. is staying in the hospital to do the other side, and we both rather vociferously set him straight, whereupon he crumples like a cheap car, and I feel like I have just kicked a puppy. I later on feel like a complete asshole, because it turns out that Doogie is not only a Harvard Med grad, but also has a Ph.D. in engineering and computer science from M.I.T. and ALSO a list of publications as long as your arm. You know, a freaking genius -- the kind of guy that makes you realize how little you yourself have accomplished.

Anyway, by Monday Mr. B. has moved into the step-down unit and Dr. Chess Club examines him and gives the OK for him to go home. Two weeks later, we go back so the stitches can be taken out, and Dr. Chess Club shows us the angiogram films. I find this fascinating, because my now almost five-year stint in the Land of Oncology has given me an interest in this sort of medical thing without having to do anything involving blood, I've read everything I can about moyamoya and what it looks like, and this makes it all REAL. I also find it kind of endearing that Dr. Chess Club is so clearly a Brain Geek, because while he explains everything in a very serious, doctor-y manner, you can tell that what he REALLY wants to say is "Look! How cool is THIS?" I hope he never loses that.

For someone who is battling not one but two life-threatening diseases, Mr. B. is lucky in an odd sort of way. He's lucky in that fate has conspired to spare him from a life-changing surgery that he dreaded, instead offering him the treatment he wanted in the first place. He's lucky that he could have been one of those kids who has stroke after stroke from moyamoya and has two brain surgeries in childhood but instead made it into his fifties pretty much intact. He's lucky that whatever strokes he's had have left him able to still recite Jean Shepherd rants, clear 800-plus viruses off of a PC, and play chess. He's lucky that cisplatin didn't give him a stroke. He's lucky that he fell in the bathroom and this moyamoya was discovered while it was still treatable. And he's lucky that we have good insurance and he can be treated by these amazing people.

I joke about Abercrombie and Neurosurgery and Big Cancer Center, but I am so humbled by the expertise and dedication of these young physicians and nurses at Big Prestigious Hospital, and by the doctors and especially the chemo nurses at Big Cancer Center. It is so energizing to interact with these ferociously smart and dedicated people. I'm awed by what they do every day. I'm just a chump that puts together systems for entering clinical trial data. These are the people who actually save lives. That many of them are still new at it means that they haven't lost their empathy and their excitement and their sheer joy in what they do. So if any of the people at either of these facilities should happen to stumble on this and recognize yourself or your friends, please know that we kid because we admire, and because in a year like we're having, laughter is the best medicine.

Related note: If you or anyone you know has been or ever is diagnosed with moyamoya, this series of videos by a 28-year-old woman who was diagnosed and treated are a first-rate resource.

(Go to Part III)

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Blogger skywind said...
I didn't think you could top Dispatch # 1; oh me of little faith. This is brilliant, and you may possibly owe me a new keyboard. I hope you're planning on sending it to Dr. Chess Club at some point. Hell, I hope you can get this published somewhere, it's fantastic. You're amazing.

Blogger Elayne said...
My god, Jill. I'm sorry I don't have any words of comfort to offer that will come close to your brilliant writing about this amazingly trying time in your and Mr. B's life. Just know that I'm thinking of you both and hoping all the nightmares are over soon, and I send you both all my love and lots of hugs and please please please let me know if I can help in any way.

Anonymous jb said...
I adore these brave-n-hilarious essays about the ordeal you and Mr. Brilliant are going through. Sending continued kind thoughts and good vibrations to both of you.

Blogger Batocchio said...
That Spicoli paragraph is pure gold.

Best of luck with everything!

Anonymous Anonymous said...
And I thought I was long-winded. What fun, this little cancer drama we all share. That was a good read. How far you have come in such a short time. Thanks.