I heard this gorgeous song on Pandora today and have been pretty much a mess the rest of the day. Antoine Dufour, Song for Stephen:



I am probably going to spin off further posts about this new life I'm trying to live into a different blog. It may be public, it may be by invitation. I'll let you all know if I decide to make it by invitation only and you'll be able to request and invitation. But I think that further episodes of the Deeply Personal don't really belong here.

I've gone back to work this week. I think it's good for me, it gets me back to something that passes for normal, it eliminates that irrational raw gnawing fear that they'll forget I work there, and it gets me back into the land of the living. My colleagues have been wonderful. This bunch that balks at gift cards for our administrative assistants raised $420 for the Ramapo-Bergen Animal Refuge, FOCAS, and the Bladder Cancer Advocacy Network. I've been pretty much OK this week until I heard the song posted above. Sure, I get a bit weepy, especially when I get home after work, but all things considered I've been OK. But tonight I was driving home and a massive wave of grief just washed over me just as I was getting on 287 north and it was as if the words I WILL NEVER SEE HIM AGAIN were written in fire on a two-by-four that was delivered soundly to the bakc of my skull.

It's a grief tinged with rage, because in a moment of madness last night I decided to listen to some of the recordings I made of medical appointments we went to. In a way, having these recordings make Mr. B. seem not quite so gone because his voice is still there. But it also underscores that concept of "NEVER". Where the rage comes in is just how often the word "hydration" appears, no matter who is talking -- Dr. Chess Club talked about hydration. Dr. Endearingly Nerdy Brain Doctor talked about hydration. The radiotherapy nurse talked about hydration. The oncologist talked about hydration. Hydration hydration hydration, and Mr. B. simply would not do it. In his last few conscious days, he developed a hankering for tomato juice, and went through two 64-ounce bottles in three days; probably 4-5 bottles during that last week. I argued with him that this was not hydration, but he insisted that he was allowed to have juice, and after thirty years, I knew that the more I dug in my heels the more tomato juice he would drink. It is a thing you guys seem to always do and it makes us nuts. So tonight the crying jags are not just about the grief that's really starting to hit now, but they also have an element of YOU DUMBASS...IF YOU HAD JUST HAD SOME GODDAMN WATER YOU'D STILL BE HERE.

I hate this.

Labels: dumbassery, grief, moyamoya, nothing is certain except death and taxes, personal musings

And it wasn't even the bladder cancer.

Mr. Brilliant suffered a very small stroke two weeks ago today. He even said it was small. "I seem to have suffered a small stroke," he said in words that were barely intelligible. It didn't seem all that small, given that he could hardly speak and his left arm was twitching. "I don't seem able to control my left arm." He seemed confused and loopy, but also able to think clearly. "I think your thoughts are OK, you're just having trouble pronouncing words, is that right?" I asked. "Yes," he said.

I called the ambulance to take him to the hospital. He started having seizures before we even left the house. Unfortunately, the EMTs have to take you to the nearest hospital, which is how he ended up at Valley Hospital instead of Hackensack University Medical Center. In the emergency room, they cleaned him up, did the same bedside neuro test that he had passed with flying colors just weeks earlier, only this time he was able to pass none of it. "M...o...y..a...m...o...y...a", he tried to explain. He was given Ativan and Keppra to try and stop the seizures and admitted to the neurology ICU.

Where they proceeded to let him seize for thirty-six hours, titrating the meds and telling me they had to do that to find the right dose.

By Monday night I was hysterical. I called Dr. Chess Club's office and he called back within 15 minutes, horrified that they had let him seize for so long. He explained to me about status epilepticus, which is a state of constant seizure, and told me to call the covering neurologist and say that he MUST be intubated and sedated to knock down the seizures before anyone turns in for the night. I will not relate anything else about my dealings with Valley Hospital right now, but Dr. Chess Club also felt that he would be more comfortable if Mr. B. was transported and under his care, at which point I began feeling more relief already.

It took all day on Tuesday the 24th to get a bed at Big Prestigious Hospital and the transport, but by late night, he had been moved, and I heaved a huge sigh of relief.

The plan was to keep him sedated for a few days to let his brain rest, then take him off sedation and make sure he's not still having seizures. The expectation was that he would gradually wake up, and then they could gradually withdraw the anti-seizure drugs.

On Friday the 27th the sedation was withdrawn. At 1:10 PM on Sunday the 29th, I was sitting in his room by the window, using the sill as a desk for my laptop. Suddenly I saw a yellow balloon bobbing right outside my window. Then it started wafting up, up, and away. There was no reason for a yellow balloon to be there outside a 2nd floor window of a hospital sitting on an overpass over the FDR Drive. But there it was. On September 30 he opened his eyes. There was no way to tell if he was actually in there. It seemed to me that he was, but now I am not sure. I went home for two medical appointments of my own, then back in to camp out in a chair in his room all night, because I wanted to be there as he started to emerge from the sedation. On October 1, no one was really sure of how conscious he was. Dr. Chess Club came in and said that he was not convinced the Versed had worn off. He said we are not there yet in terms of having to deal with decisions, and he was still hopeful we wouldn't get there.

By Wednesday, October 2, it was becoming clear that he was not coming out of it. They withdrew one of the seizure meds, and at my request, we had a meeting in the afternoon to discuss Mr. B's advance directive. The short-term plan was to try to withdraw the anti-seizure meds and see if he would go into seizure. They suggested I take a day off an not come in, since for 8 days straight I had left the house at 5 AM to get there by 6:30 and beat the traffic, worked an 8 hour day by the windowsill including teleconferences, and then driven home at rush hour -- and I was exhausted. I think they were not all that hopeful by that point and did not want me to see him go back into seizure, which he did, on Thursday night, after all the depakote had been flushed from his system.

On Friday, October 4, he broke into seizures on BOTH sides while the ICU team was examining him, and this time THEY requested the family meeting. By now I knew full well what was coming.

They offered me 4 options for long-term plan going forward:

1. Continue the same plan of medicating for seizures and support for breathing and nutrition, with resuscitation.

2. DNR but continue the same plan for medication, breathing and nutrition.

3. DNR with no escalation of care - no tests, no MRIs, no infusions.

4. DNR and withdrawal of care - use morphine drip and continue medicating for seizures.

Options 1 and 2 required tracheostomy and feeding tube in the stomach.

Option 3 could result in blood clots, pneumonia, other infections.

So there was really no option other than #4. No way did Mr. B. want a trach and direct feeding tube...and there was no sign that he would ever be able to stop seizing no matter how long we let his brain rest on Versed, which they put him back on when he started seizing.

So Saturday we went in. I have never felt so utterly awful in my life. I knew in my head that Mr. B. the person -- the guy who joked about wanting to be stuffed and propped in the corner after death as a constant reminder of our marriage, the guy who liked the Grateful Dead and Miles Davis and kung-fu and comic book movies -- was already gone; perhaps gone with that yellow balloon on Sunday. But it's one thing to know that what lies in the bed is by now just a shell holding him back from whatever is next for him. It's quite another to know that when the ventilator is removed from your spouse, he will die; to go into the room after it is removed and watch him, swollen with edema, still with hiccups from chemotherapy, nearly bald, with a healing EDAS scar, covered in bruises from needle sticks and IVs, open his eyes briefly in a reflex action. It was barely 20 minutes after they removed the ventilator that he stopped breathing. It is so upsetting just to type that again, because I can never un-see what I saw and what I had to experience. I don't wish that on anyone, and I hope none of you ever have to make that decision or stand by while it happens.

After he was gone, one of the ICU doctors told me that the results of his MRI from the day before showed multiple strokes all over his brain, as if his entire head -- all those little weak moyamoya vessels -- were exploding at once. There really was no other choice I could have made that would have been anything other than torment.

Mr. B. had always said he was not afraid of death, but he was terribly afraid of dying. At some point I will regard it as a blessing, that he got the end he wanted -- unconscious and painless and gentle, instead of the horror that is slow painful death from bladder cancer. But we were together for thirty years, lived together for twenty-nine, and had celebrated our twenty-seventh wedding anniversary just the evening before his stroke. I cannot bring myself to believe that he's gone. I go upstairs and there are all his clothes and his CDs and the size-13 sneakers that we always called Bozo shoes. There's the chair he sat in while he smoked, and his guitar and bass and his tech books. And when I think that never again will someone come downstairs and say, "Good morning, sweetie"; never again will I need to call home to tell someone I'm on my way home from work; that I will never, ever see him again, I feel like I don't know how I will go on. And yet I will go on, and make a life, because I have to. Because life is just too short not to. I just wish his wasn't as short as it was.

Note: Thanks to everyone on the medical teams at Memorial Sloan-Kettering Institute and New York Presbyterian/Weill Cornell that treated Mr. B. over the last six months and who tried mightily to restore him to health. These are some of the brightest, most caring, dedicated people I have ever met:

• Dr. Jonathan Rosenberg
• Dr. Bernard Bochner
• Dr. Han Xiao
• Dr. Preeti Parhar
• Dr. Igor Gavrilovic
• Dr. Babak Navi
• Dr. Jared Knopman
• Dr. Daniel Lahm
• Dr. Fowaz Al-Mufti
• Dr. Baxter Allen
• Dr. Benjamin Rapoport
• The chemotherapy nurses at Memorial Sloan-Kettering Cancer Center in Basking Ridge, NJ
• The nurses and all the staff in the Neurosciences Intensive Care Unit at NYP/Weill-Cornell

Labels: grief, moyamoya, nothing is certain except death and taxes, personal musings

I don't mean to turn this blog into a personal diary, but Mr. Brilliant's medical saga is starting to have more twists and turns than the roller coaster at Coney Island. Sometime during the night on Saturday, Mr. B. suffered a stroke. I am heading out now to Abercrombie and Neurosurgery Medical Center, where I hope Mr. B. is now, after Dr. Chess Club, a.k.a. a real-life Superman, and his real life Angel of Mercy, managed to get him sprung him from Klown Kar Hospital here in NJ, where an impaired but still with us on Sunday Mr. B. turned into an unresponsive person whacked out on three seizure meds with aspiration pneumonia. As of 9:30 last night he had still not arrived, but I'm assuming that if he didn't, they'd have called me.

I'll write more about this saga later, probably with somewhat less humor than last time, but right now I'm hoping that whoever takes out his breathing tube when they bring him out of sedation is under the expert eye of Spicoli the Anesthesiologist so Mr. B. doesn't freak out. At least I got to sleep a few hours last night without wailing. That might have woken the neighbors.

(Go to Part IV)

Labels: moyamoya, personal musings

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