It seems that everyone has an opinion on the tragic story of Jahi McMath.

For those who haven't heard about this yet, Jahi McMath is a 13-year-old who underwent what was supposed to be a routine tonsillectomy at Children's Hospital in Oakland, California. After surgery, she went into cardiac arrest after coughing up blood and has been declared brain-dead by the hospital. Jahi's family does not believe that she is dead and has been fighting to keep her on life support. There were earlier reports that a facility in New York has been found that is willing to take her, but more recent reports simply say that the family is trying to find a facility. If they do, Jahi needs to have a tracheostomy and percutaneous endoscopic gastrostomy (PEG, or feeding tube into the abdomen) before she can be transported. The hospital is refusing to perform this procedure because they regard Jahi as dead and legally they have no obligation to perform procedures on a dead person. There is at this point no outside physician set up to come in and do this, and it's questionable whether any physician would even be willing to. Of course the usual assortment of ghouls has come out of the woodwork, with a foundation dedicated to the memory of Terri Schiavo working with the McMath family.

Back when the Schiavo case was all over the news, to the point of federal involvement by officials smelling Christofascist Zombie Brigade votes, I too thought the case was cut-and-dried, that Schiavo was indeed brain-dead and that there should not be an issue here. I still do. But I no longer regard people as stupid who believe that their loved ones who are on ventilators are still present in their bodies. I no longer regard them as stupid or deluded because I've now been there. I've now seen it. I now know what it's like to see the person you love open his eyes and at first you think he's looking at you but there just seems to be nothing going on behind the eyes. You don't know if he's seeing you, if he knows you're there, if he feels you massaging his feet that are so swollen they feel like massaging wax, if he hears you tell him that if he will just wake up you will take him to the Grand Canyon and fly first-class, if he hears the music you play on your iPad on his pillow. You don't know until they shine a light in his eyes and stick a Q-tip in his nose and into the back of his throat and he doesn't blink or sneeze or gag -- and even then you don't know because hey, he opened his eyes, didn't he? I now know what it's like when the nurses turn the person who used to thrash so much during the night that being in the same bed with him was like being on a storm-tossed sea. I now know what it's like to see your spouse open his eyes after they take the ventilator off and run out of the room yelling at the nurses that they promised he would be sedated and comfortable -- and have them tell you it's just a reflex.

I know what it's like to sit in a room full of doctors and patient advocates and other members of hospital officialdom a week after he should have awakened and two days after the neurosurgeon you still trust said that he doesn't think it's time yet to talk about options, that he thinks your husband will still wake up. I know what it's like to be given four options as to what to do now that your husband's brain has shown that it simply cannot handle the withdrawal of even one of the four anti-seizure medications they have been pumping into him without going into seizures, only now it's seizures on BOTH sides of the brain, not just the left. Yes, Mr. Brilliant had an advance directive that made clear that if I agreed to have him trached-and-PEG-ed and moved to a rehab facility, and he ever woke up (which was doubtful) and had to re-learn how to walk and talk and feed himself, that he'd be really, really pissed. But that doesn't make it one bit easier to say "He would not want to live this way" and make him "withdrawal of care", as the hospitals call it. The only thing the advance directive does is keep you from being in this limbo of hoping for a miracle.

I also know what it's like to second-guess yourself endlessly, especially after seeing things like this, which seem to reproach you for not doing whatever you would have had to do in order to get a reluctant patient to the emergency room and taunt you about someone whose spouse DID get her to the ER and she recovered from a stroke. The second-guessing is horrible, and I will probably do it forever -- playing that Saturday over and over and over again and wishing I'd called Dr. Chess Club as soon as Mr. B's speech started to slur instead of being weary and not fighting his refusal because for months he'd been getting angry with me and lashing out every time I reminded (or nagged, if you prefer) him to drink water for hydration, or noticed something that wasn't quite right -- and wondering afterward, after seeing things like this if that would have made a difference.

So I really can't judge Jahi McMath's family for refusing to believe that their daughter is gone. Her chest moves up and down with each breath, even if that breath is being accomplished with a ventilator. Maybe Jahi's eyes are opening too, only her family doesn't work on oncology trials and doesn't know enough to be the pain in the ass that I was. They see her eyes open and they see her "breathe" and they simply cannot fathom that while the lights may be on, there's nobody home in there.

I was lucky, as odd as that sounds. I dealt with doctors who were empathetic and caring and really "got" what my dilemma was and how much I wanted to balance hope with Mr. B's wishes. They knew the mental anguish I was going through and tried to do everything possible to give me the medical information I needed in order to try to put my mind at ease -- not that anything would have worked, but I give them credit for trying. There are things I wish they had done differently, of course; I wish Dr. Chess Club had emphasized that Mr. B. was still at risk of stroke and and about what symptoms to be vigilant. I wish a hospice nurse had been there at the end and that it had been better explained to me what to expect after the ventilator had been removed. But no one is perfect, and no one called Mr. B. a corpse or a dead person the way Children's Hospital is being with the McMath family. Bedside manner matters. Even when critical care physicans have to detach because if they got emotional over every patient where something goes wrong, they'd go nuts in short order, the illusion of caring matters. The doctors at Big Prestigious Hospital may or may not have actually cared, but they at least gave the illusion that they did. It appears that the doctors at Children's Hospital aren't doing that, and they are reaping the consequences.

I'm not sure one ever recovers from having to make that choice, to sign those papers, to make the affirmative decision to "let go." I don't know if I ever will. Yes, Jahi McMath is probably dead. But not so long ago she was a happy 13-year-old girl with hopes and dreams and giggles; just the way Mr. B. went from putting his resume back on the job boards and looking forward to a nice Thanksgiving dinner to celebrate the end of his cancer treatments and recovery from two brain surgeries to lying unknowing in a bed in an intensive care unit with tubes coming out of every orifice in his body. It's hard to wrap your mind around that. I had an advance directive and kind and caring physicians and a good support structure and enough understanding of medical terminology to provide a road map to the right decision, even if I do still second-guess myself. The McMath doesn't seem to have any of that. So I can't judge them, even if I think they are wrong.

Labels: end of life care, medicine, personal musings

Everyone who's ever worked in an office chuckles at Dilbert, but its creator, Scott Adams, is a douchebag. He likes to fancy himself a libertarian, but like many libertarians, he's just a douche. In his latest missive, he's decided that it's the government's fault that his 86-year-old father was being kept alive in a hospital by means he does not detail:

My father, age 86, is on the final approach to the long dirt nap (to use his own phrase). His mind is 98% gone, and all he has left is hours or possibly months of hideous unpleasantness in a hospital bed. I'll spare you the details, but it's as close to a living Hell as you can get.

If my dad were a cat, we would have put him to sleep long ago. And not once would we have looked back and thought too soon.

Because it's not too soon. It's far too late. His smallish estate pays about $8,000 per month to keep him in this state of perpetual suffering. Rarely has money been so poorly spent.

I'd like to proactively end his suffering and let him go out with some dignity. But my government says I can't make that decision. Neither can his doctors. So, for all practical purposes, the government is torturing my father until he dies.

Scotty, if you want to blame someone for this state of affairs, blame your father for not doing an advance directive. With an advance directive, you would have been able to meet with his doctors and determine what treatment was appropriate for his condition. Anyone who is in his or her eighties and doesn't have one should do one now. Even if you are younger, you should do one now.

I went to an attorney this week to draw up a will and an advance directive with a healthcare proxy, so that if I am ever in a situation like the one Mr. Brilliant was in, I'm not kept suspended between this world and the next for months or years with a tube to make me piss, another up my ass, a PICC line in my clavicle, an arterial line in my arm, and a ventilator and nasogastric feeding tube down my throat. That's not to say I don't want a chance at reasonable quality of life, but when to withdraw care isn't always a simple question, and I know that as well as anyone. I will always be grateful to Mr. B.'s doctors for heeding my pleas to be honest with me about his prognosis and whether it was going to be worth putting him through the invasive things he went through. They wanted as much as I did for him to come back from whatever place he went to when his brain started seizing and he had to be on heavy sedation and four anti-epilepsy drugs in order to quiet it enough to keep the seizures from coming back. There are people who have had strokes and left the neuro ICU with a trach and PEG and woke up six months later. But they are the exception, not the rule. And when it was clear that no amount of any medication was going to keep the seizures at bay without keeping him in a coma indefinitely, perhaps permanently, they offered him as quiet, painless, and fear-free an end as was possible. And they could do that because Mr. B. was thoughtful enough to make his wishes known well in advance.

So, Scott Adams, it wasn't the government keeping your father alive against YOUR will, since we don't know what his will was (and what the hell does his estate matter to you anyway? You're a fucking multimillionaire). It was your father himself, who put you, your family, and his doctors in the position of not knowing what he would want. You're blaming the wrong person, pal.

Labels: advance directives, medicine, nothing is certain except death and taxes

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)

Labels: medicine, moyamoya, personal musings

It's been quite a whirlwind here at Casa la Brilliant lo these last few months. I've been working 7 days a week trying, mostly in vain, to keep caught up at work. Mr. Brilliant underwent three rounds of chemo with relatively few side effects, given the massive doses he was given. Sure, he felt lousy for three days after the last dose, and he lost most of his hair, but he's been quite the trouper and a relatively good sport about the whole thing...and when you're anticipating bouts of retching nausea and cachexia, he came through it pretty well....until the day during the July heat wave when he collapsed coming out of the bathroom, hitting his head on the wall on the way to the floor. And of course this happened while I wasn't home.

A day later he finally got around to telling me, and three days later, when I became alarmed because he was not having his usual perk-up, I called Big Cancer Center where he's getting treated and they insisted he go to the emergency room, where they stuck him full of needles, brought in lots of machines that go "PING!", hot and cold running nurses, and finally, medical techs that rushed him upstairs for a CT scan of the head, because when you a) fall, b) hit your head, and c) have good insurance, and d) the hospital just opened in June and has almost no patients, you get lots and lots of procedures and tests.

After the MRI, the nurse practitioner comes in and asks, "So when did you have your stroke?"

Wha???

Turns out that the CT scan showed evidence of "an old infarction", which basically means a stroke sometime between birth and about a month ago. Who knew? Anyway, they admit him for observation at the concurrence of his oncologist, and for 24 hours they stick him full of needles every few hours, do a cardiac ultrasound, stick him with more needles, send in two giggling physical therapists whom he promptly dismisses, and then stick more needles in him...and then the next day they do a brain MRI, and in the afternoon, a neurologist comes in and says "You look like Jack Nicholson." Now, Mr. Brilliant looks nothing like Jack Nicholson, except that there are some people, including some family members, who think he does. Other people have said he looks like Rich Little or Jim Carrey, and my mother used to say he looks like Tim Robbins, which he doesn't either. But Jack Nicholson is a relatively cool dude, so Mr. B. decides to be a good sport about doing a bunch of silly bedside tests designed to measure his level of infirmity -- except he doesn't have one. He passes the neuro test with flying colors in a game of "Stump the Chump", which is what the neurologist is now feeling like. After much hue and cry and tantruming by both Mr. B. and me, they finally realize that this particular gravy train is bound and determined to leave the station, and they let him go home, where there is already a message from the oncologist, saying she wants him to see Big Cancer Center's neurologist.

So off we got to see Dr. Brain Doctor from Big Cancer Center, who also can't make heads or tails of what is going on with Mr. Brilliant's scans. There is clearly evidence of a stroke, and apparently a pretty significant one, and yet here is this guy walking in on his own, passing every cognitive test with flying colors, pushing him away and pulling him with what you'd expect from someone who took up Shaolin kung-fu at the age of 48, and topping everything off with an unsolicited resounding chorus of the Announcer's Test. Dr. Brain Doctor from Big Cancer Center is an endearingly nerdy sort -- the kind of guy who thinks out loud and whose mind is halfway down the road by the time he gets his sentences out. And he admits he's stumped, wants another scan (because Big Cancer Center's machines that go "PING!" have magic Lil BUB Amazing Space Cat dust on them or something, or because we have very good insurance), so we make another appointment to have yet another scan.

Meanwhile, Dr. Oncologist consults with Jolly Jovial Oncologist at Big Cancer Headquarters and they decide that Mr. B. has to stop chemo until they determine what's going on, because it turns out that one of the chemo drugs carries a high risk of stroke. So now Mr. B. is facing radical cystectomy sooner rather than later, and we are both starting to freak out, becaue neither of us is psychologically ready to deal with surgery.

But wait, there's more!

So we go for the scan, and have a Top Secret (read: unbilled) consult with Dr. Brain Doctor from Big Cancer Center, who tells us that three radiologists have looked at his scan, and all agreed that what he has is moyamoya.


My response: "You're joking, right? What the fuck is moyamoya?" And yes, that is exactly what I say. It seems that neurology students learn about this in medical school, and then promptly forget about it because it is so rare. I won't take up blog space with a detailed definition, but here's a good place to start. We always knew that Mr. Brilliant's brain, like mine, is a strange and wondrous place, and now we have proof. But Dr. Endearingly Nerdy Brain Doctor doesn't care about the Jean Shepherd rants that are stored in it, or the memories of Gary Stevens and the Wooleyburger on WMCA, or the precepts of the Church of the Subgenius, or the entire sides of Firesign Theatre albums that are still housed therein, never mind that Mr. B. can still fix just about any PC problem you may have; he just wants us to see a stroke neurologist at Big Prestigious Hospital Affiliated with a Medical School.

So after more scans, or Tumor Assessment at End of Treatment, as we in the oncology biz call it, off we go for a fun day of first seeing the urosurgeon at Big Cancer Center, followed by enjoyment of a pushcart felafel, followed by Dr. Strokes "r" Us. The urosurgeon, a kindly man who is one of the top guys in the city and yet has somehow managed to avoid becoming an asshole, makes Mr. B's day by a) telling us that the scans show NO evidence of tumor and NO adenopathy in the pelvic lymph nodes and NO evidence of metastasis, which means a complete response to even the shortened regimen; and b) telling him that because of this moyamoya issue, surgery is out of the question, and they will do radiation instead, with a very low dose of the OTHER chemo drug, which does not carry risk of stroke but which makes him have trouble breathing so they have to shoot him up with Benadryl as a premedication. Mr. Brilliant is practically weeping with joy, because this means he is on the bladder-sparing modality that he had wanted in the first place, and "the team", which is about to grow bigger by some orders of magnitude, are clearly fanning themselves with relief because they were pumping megadoses of cisplatin into someone who, unbeknownst to anyone, was already at risk of stroke. This is in NO way a knock on the doctors at Big Cancer Center. With a disease that affects maybe one in two million people, most of them either children or Asian, why would you even THINK about it, let alone screen for it? In fact, that Big Cancer Center is a) able to turn on a dime, shift gears, and mix metaphors so quickly, and b) is going to be teaming up with Big Prestigious Hospital's neurology team makes us actually feel MORE confident in them. So all's well that ends well, we have what is essentially remission, and the radiation should clean up any pesky hidden cells that might be lurking. It's all good.

In the afternoon, off we go to the stroke neurologist, where Mr. B. passes with flying colors and a big brass band yet another bedside neurological test, topped off with another resounding chorus of the Announcer's Test. The neurologist confirms the moyamoya, but because moyamoya a) usually occurs in children; b) is usually symptomatic; c) usually occurs in women if it occurs in adults, he thinks that since we are looking at a 58-year-old white guy who is virtually asymptomatic, what we are dealing with is moyamoya-TYPE structures caused by garden-variety atherosclerosis, and prescribes a carotid angiogram.

Now, if you don't find the idea of a carotid angiogram terrifying, you either have been in and out of hospitals since childhood, or you are insane. So both of us spend the next few days freaking out in various ways at the thought of a procedure where they thread a catheter into your femoral artery, run it up to your carotids, and see what's going on. Dr. Strokes 'r' Us is convinced that what will come out of this angiogram is the need for an endarterectomy — an even MORE terrifying surgery that sounds like something Dexter Morgan would enjoy on a particularly bad day.

So after five months of dealing with a particularly nasty kind of cancer, and getting some preposterously unexpected but highly welcome good news, now we are looking at getting him through something even more terrifying. And this, my friends, looks like a good place for a cliffhanger.

Next up: Part II: Abercrombie and Neurosurgery, Hey Kids Let's Put On a Hospital, and Spicoli the Anesthesiologist.

Labels: cancer, medicine, moyamoya, personal musings