hooray for small victories

We suffered some major setbacks, but still managed to get to Manhattan well ahead of the snow. We're all very tired right now, so you can expect a fuller update in the morning. For the moment, the greatest moral victory is that I was able to get my Mac set up with the Helmsley Tower's DSL connection. This connection happens automatically with a Windows machine like my laptop, but the Mac requires special help with configuration. Luckily, a quick tutorial and run-through with the Mac's version of a "connection wizard" solved that problem, which is why I'm able to write this blog entry on a computer and not on my BlackBerry.

More later. Mom's sound asleep. Dad's got an achy back. I ended up driving in the city-- which I hadn't wanted to do, and am still thrumming-- not in a good way-- from the experience. But the main thing is: we made it. Mom's MRI is Monday at 12:30, and we got the great news that her operation will happen on Tuesday (hour yet to be determined). Weather permitting, we'll be driving home on Wednesday.


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a quickie before we shove off

We're currently engaged in whirlwind preparations to drive off to New York before this snowstorm hits the east coast. The more we thought about it, the more sense it made to drive while the driving was still relatively safe. We're "wheels up" at 3PM; we anticipate that we'll arrive in New York as the first flakes are coming down, or maybe an hour or two before that. As long as we're safely parked, there shouldn't be a problem. Walking Mom across the street won't be a huge deal in Manhattan: I've heard that they're pretty good about taking care of their streets and sidewalks, so I'm hoping that pedestrian pathways will be clear on Monday.

We're going to pretend that we'll be snowbound for the next few days. In that spirit, I'm packing up a cooler of food, along with some utensils and pots and pans, so that I'll be able to cook in the unit's kitchenette. New York prices make us wary of spending too much on restaurant (or even cafeteria) food.

Dad's out right now, obtaining refills of some of Mom's meds. We're already mostly packed; the main thing, right now, is the food prep. We also need to gas up the car.

That's all I'm going to write for now. We need to get moving. I'll write more once we're ensconced in the Helmsley. Wish us luck.


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discharged

Mom is free to go. Here's the news thus far:

Around 8:45AM, two docs came by: Dr. Young (who had met Dad yesterday) and Dr. Bagenstos, whom we remember from Mom's previous stay at Fairfax Hospital. The main finding from the MRI related to the bump. As it turns out, the bump is a tumor. Without any skull to constrain it, the cancer is now creeping outside of Mom's head.

I marveled that Dad and I could have missed the progress of an externally visible tumor, so I asked the docs whether it was conceivable that such a large growth could appear within mere days. Dr. Bagenstos said it was possible: Mom's cancer is especially aggressive.

As far as the docs are concerned, surgery at NYP/WC is the next step. "At this point what she needs is the [intra-arterial Avastin]treatment," Dr. Bagenstos said.

They left, and I continued to feed Mom her breakfast: a waffle, a strip of bacon, a small bowl of oatmeal, some cubed honeydew melon, juice, and some coffee. Around 9:20AM, the attending physician, Dr. Wolfe, came in and confirmed that Mom could leave anytime. He also confirmed the return of Mom's thrush, and said to just keep giving her fluconazole (anti-thrush med).

Other nurses have swooped in and out to see Mom, take her vitals, and administer her meds. Someone will have to change her diaper. Meanwhile, Dad is on his way over to help me with discharge paperwork and with prepping Mom for yet another wheelchair ride to the van.

So that's where we stand. Now we need to focus on getting Mom safely to New York. This may mean leaving today so as to beat the coming snow.


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Mom's stats (from sometime during the night)

As you can see above:

Respiration = 18 breaths/min (a bit high for Mom)

Blood pressure = 114/65 (diastolic is low for Mom)

Pulse = 91 (high)

Pulse-Ox = 93% (uncharacteristically low for Mom, who usually varies between 96% and 99%, as I imagine most folks do)

Temperature = 97.3 degrees Fahrenheit (low for Mom)

I've been at the hospital since 7:25AM. Haven't seen any doctors, but it's possible I missed them. They often come around again later in the morning.




Sent via BlackBerry by AT&T

up early

I'd had only about two hours' sleep when Dad woke me yesterday morning, so I plan on getting a decent night's sleep tonight. I have to be up at 5AM so I can drive over to the hospital by about 7: we want to intercept the neurologists when they're on their morning rounds, and find out what they have to say about Mom's MRI images. There's a chance I won't be able to do this even if I get to the hospital in time to catch the docs: Fairfax Hospital has been very strict, during the flu season, about enforcing its truncated visiting hours.

Meanwhile, Dad will stay home in order to take a call he's expecting from Dr. Boockvar at NYP/WC. The New York hospital fixed a new MRI date-- this coming Monday at 12:30PM-- but we still need to know the date of the actual operation. Dad's going to lobby for having the operation the very same day. Assuming no further problems with Mom, we'll be driving up to New York on Sunday evening, checking into the Helmsley, spending the night, and leisurely taking our most precious patient across the street for her perfusion MRI the following day. What happens after that... we still don't know. Tomorrow morning's phone call from Dr. Boockvar ought to fill in the rest of the picture.

So Mom's alone at the hospital. I hope she's sleeping warmly and peacefully, and I hope the nurses are checking in on her regularly. Mom's at a point in her decline, now, where any little medical event could be disastrous. It may sound melodramatic to say this, but I hope she makes it through the night.


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MRI, finally

Mom was admitted to the Neuroscience wing a few hours ago; Dad's been watching over her. Sean was with the parents a while; David's here now, having arrived only a couple minutes before I did.

When I arrived in Room 364, David was feeding Mom her bland dinner: Salisbury steak, broccoli, and potatoes. I offered to take over so that David and Dad could go eat at the cafeteria. Dad hadn't eaten anything all day.

After Dad and David left, I began feeding Mom. She was already close to finishing her meal, but she began coughing as if she were choking on her food. I sat Mom up higher and called a nurse. Mom's airway wasn't blocked-- this was audible-- but it was alarming to watch her gasp as she struggled to clear her throat. The nurse read the situation the same way: as long as Mom's airway wasn't blocked, something as extreme as the Heimlich maneuver was unjustified.

Eventually, Mom was able to steady herself. The nurse asked me whether we should feed Mom softer food from now on. I nodded yes. She left, and Mom and I were alone.

Mom looked terrible, as if she had just been in a fight. Even before her coughing fit, Mom was in bad shape: she was largely unreactive, eating mechanically, and her right arm was shaking uncontrollably. After the coughing episode, she settled back into her mattress, exhausted. She closed her eyes, and just like that, she went to sleep.

A few minutes later, another nurse came in and announced that it was time for Mom's MRI. We'd had no warning of when this would happen; perhaps the imaging department itself had no idea what its schedule was.

The nurse had to change Mom's diaper before the MRI tech could transfer Mom to his gurney. This took a few minutes. I texted three people while Mom was changed, and held her hand just before she was wheeled out. She looked small and helpless in her gurney.

Dad and David reappeared about two minutes after Mom had left. We're sitting quietly in Room 364 right now, waiting for Mom to come back.

Dad managed to cancel our hotel reservations, but ended up having to pay for a day's stay because he had canceled less than 24 hours before check-in time. David, meanwhile, lost a huge amount of money on his Priceline plane ticket: Priceline refunded the ticket's value after David explained his situation, but the airline penalized David pretty heavily.

With Mom's health deteriorating, we can expect more situations like this: sudden dips in cognitive ability, bacterial, viral, and fungal flareups, and so on. I don't know whether this is something I'll ever get used to.

It'll be interesting to hear and see what this MRI shows. I doubt it'll surprise me as far as tumor growth is concerned, but if it sheds light on the bump atop Mom's head, that will be something.


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admitted

Mom is to be admitted to Fairfax Hospital's Neuroscience wing, third floor-- a place we know well thanks to Mom's tenure there from late spring to midsummer. Still no firm time given for the upcoming MRI, but according to my brother Sean, one doc came to see Dad and was taking about "tumor growth." "Unsurprising," I replied. I've suspected for weeks that the carboplatin has been doing nothing for Mom. Tumor growth is actually less of a worry for me than the question of Mom's new and disconcerting bump: what is it? What's inside it? How did it get there? What can be done about it? And while we're at it, the pink patches on Mom's scalp-- what are they, and what can be done about them?

No one has called me from New York yet re: rescheduling Mom's operation. I checked our calendar for next week and found it to be free through Christmas Day; Dad now knows this, and he intends to call NYP/WC back so as to hash out the rescheduling himself (no need for a middle man now that Dad knows the what the calendar hold for next week).

Sometime soon, Dad will call me to ask me to drive back up to the hospital. Unless my brother Sean buys himself and the parents food, I'll be bringing food from home. In the meantime, I haven't heard what time, exactly, Mom will be transferred from the ER to the Neuroscience wing.


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trip canceled for now

Fairfax Hospital hasn't told Dad when they plan to perform their MRI, so it appears that Dad will be waiting with Mom a while. We won't be able to make the 8:30PM MRI appointment. Sean is on his way over to the Fairfax ER (he may already be there). David's in DC, at his office, but is staying abreast of the situation. My buddy Mike has been calling and texting, as has Pastor Jeri.

NYP/WC called back to tell us that they will not accept Fairfax's MRI images, because for the purposes of the clinical trial, NYP/WC does its own special perfusion MRI (NCI also does this). This means that, whether or not Mom gets an MRI done in Virginia, she'll have to have a separate MRI done by NYP/WC the day before her operation.

While Dad is at the ER, waiting to find out when Mom's MRI will occur, I'm at home again-- having recovered my wallet-- waiting for a call from NYP/WC to reschedule Mom's perfusion MRI and surgery for next week. Dr. Boockvar won't be there next week, we were told, but his research partner, Dr. Riina, will be there. Dr. Riina is the one who generally performs this surgery, anyway, so Dr. Boockvar's absence changes nothing. Right now, the important thing is to reschedule Mom's operation for the soonest date possible-- Tuesday, if that's available (Monday would have to be the MRI).

So we're canceling the trip up to New York today. We'll need to call Mom's sister and let her know what's going on, since we promised her an update. Dad has to cancel the hotel reservation, and assuming Mom is to be discharged from the hospital today, I'll have to drive back there to pick her and Dad up.

What a day, eh? And it's not over: we still don't know what today's MRI will reveal. I feel bad for my brother David, who paid for a non-refundable plane ticket up to New York. Looks as though there's going to be an empty seat on tomorrow morning's flight.


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5AM: back to the ER

We're taking Mom to the Fairfax Hospital emergency room. Dad woke up earlier and noticed Mom touching the top of her skull, where a large, soft lump has appeared during the night. The lump sits just at the edge of the crater where Mom's bone flap is missing. It might be an infection; it might be something else.

Obviously, the timing is horrible, as we're supposed to be leaving for New York today. We may still do so, but we'll have to see what's going on with Mom first.

More later.

UPDATE, 5:30AM: We're about to head out. Mom needed some bathroom time. While she was on the toilet, Dad saw that Mom's tongue was covered in a thick white paste; this may be related to the lump if we're looking at some sort of infection. Mom isn't feverish, though, so who knows what's happening?

UPDATE, 6:50AM: I've dropped Dad and Mom off at the ER. As of 6:45AM, they received a berth. I have no idea whether they'll be out of the ER in time for us to leave for New York; it's likely that our trip will have to be rescheduled in light of what's going on. To make matters worse, I appear to have misplaced my wallet in the rental van, which Dad turned back in yesterday to Honda. A Honda staffer had told Dad that he would drive the rental van back to Enterprise Rent-a-Car, right up the street from the Honda dealership. My wallet could be at either place: the Honda dealership or at Enterprise Rent-a-Car. Here's hoping a sharp staffer at either place saw the wallet and stuck it in a lost-and-found box.

I'm about to head back to the hospital. I drove home to collect Mom's wig (a possible source of irritation, which might explain the red patches on her scalp, if not the swelling), my cell phone, and Dad's NYP/WC paperwork, so that he can call and reschedule, if necessary. Traffic was already starting to look bad at 5:45AM; it's going to be even worse now, at 7AM.

Final note: Mom had slept on the couch during the night, instead of going to her bed. Dad had thought she looked very comfortable and peaceful there (she'd fallen asleep before dinnertime), and I agreed that, maybe this once, we could leave her where she was instead of forcing her to wake up and move. Dad chose to sleep in the living room with her, to watch over her. My brother David stopped by, probably a bit before 5AM, to drop off his GPS navigation device (for us to use to get to NYP/WC and the guest lodging). This visit woke Dad up, and after David had left, Dad said he noticed that Mom was rubbing her wig-covered head. Upon removing the wig, Dad saw the scarily large bump. He woke me a few minutes later, told me he thought we needed to hit the ER, and that's how we ended up where we are now.

Right-- off to Fairfax Hospital.

UPDATE, 9:34AM: I'm back home as of about 8:50AM. Put $10 of gas in the van (which was nearly empty), then drove home with the intention of finishing up my trip packing and helping Dad by finishing up his and Mom's trip packing as well.

Dad just called (9:32AM) and had no further insights from the docs. Mom's had blood work done (no results yet), and is being taken in for a CT scan as I write this. We still have no idea whether the docs will feel it's OK to discharge Mom soon. Thanks to the paperwork that I'd fetched from home and driven to Dad, Dad was able to call up to New York to reschedule Mom's MRI tonight. They rescheduled her from 6:45PM to 8:30PM, which buys us some time.

Many thanks to Pastor Jeri, my buddy Mike, and my brother Sean for their text messages this morning (I had texted both my brothers at 6:50AM to relay what was happening with Mom).

Enterprise Rent-a-Car has yet to call me back: I had spoken with Honda first, and they had told me that their lost-and-found contains no wallet. I called Enterprise next, and found out that Honda still has their van, but they-- Enterprise-- will collect the van this morning and call me after they inspect it. I'm still awaiting their call; I might actually drive over there once I've showered: they're just 7 or 8 minutes down the street from us, as is the Honda dealership.

More news on Mom when we have it.

UPDATE, 10:02AM: After being interrupted twice while in the shower, I've learned that NYP/WC messed up Mom's MRI scheduling to begin with: she should never have been scheduled for an MRI after 4PM. Why? Because she's part of a clinical trial, and for whatever reason, patients in her group all need to have their MRIs done before 4PM. The lady who spoke with me said she'd try to work something out for tonight, but my own prediction is that a trip to New York today is going to be a bust.

And maybe that's for the best: we need to stabilize Mom, I need to get my wallet back, and certain parts of the NYP/WC need to get their act together. As of this writing, I no longer know what time Mom's MRI is scheduled for.

UPDATE, 10:30AM: Just spoke with Erica from NYP/WC. Mom's MRI has definitely been scheduled for 8:30PM. The ball is now in our court: we have to make sure we can get Mom there in time.

UPDATE, 12:14PM: Mom's had her CT scan and blood work. The blood work doesn't show anything remarkable; the CT scan, however, has prompted the ER docs to schedule an MRI for Mom. There's good and bad to this: the bad part is that we may be dealing with something serious. The good part is that NYP/WC has told Dad that they might-- might-- accept the Fairfax Hospital MRI in lieu of doing their own. That would free us up to travel to NYC at our leisure. I'm going out the door, but someone from New York is supposed to call me about whether NYP/WC will indeed accept Fairfax's MRI images. We're coming down to the wire, now.


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almost ready for launch

I have relatively little to prep for tomorrow's trip back up to New York, so I'm taking it slow tonight. I'll do some laundry, pack some items up, then head off to bed early so I can wake up at a decent hour (we have to leave home by 10AM).

The weather forecasts for both Virginia and New York are looking good; Virginia might see snow on Saturday, the day we're driving back, but since we won't be in a rush to get home, we can afford to mosey along cautiously if we do encounter the white stuff.

I've already written about my mixed feelings regarding the upcoming surgery: excitement and trepidation. I focused more on the trepidation last time around, so let me balance that out with a couple more reasons to be excited about Mom's upcoming procedure.

1. I asked Dad to find out whether the team would be blasting all the tumors in Mom's head, or just one (the specter of the one trial patient who died-- his tumor infiltrated his brain stem-- continues to haunt me). Today (Wednesday), it was confirmed that, yes, the NYP/WC team's purpose is to eliminate everything they can find.

2. Earlier on, Dad asked the team another burning question we had regarding tumor shrinkage and subsequent reduction in swelling. With Dr. Benson's dire words in our minds (long-term edema can lead to permanent brain damage), we were worried about the timetable for edema reduction. Would it take a while to happen after the tumors had shrunk? The NYP/WC team replied that the shrinkage of the edemas would occur right alongside the shrinkage of the tumors. That, to me, is fantastic news.

So yes, I'm excited to see what this newfangled intra-arterial Avastin delivery system can do. My fervent wish is that Mom will pop out of surgery with no complications, and will be ready to head back home on Saturday-- already showing small signs of cognitive (and maybe even physical) improvement.

Like Red says at the end of the movie "The Shawshank Redemption":

I hope.


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getting it (almost) backward

I must have misheard Dad. It appears that Mom will be staying with us at the guest facility tomorrow night (after she's done with her MRI), and that it'll be up to us to wheel her over to pre-op very early on Friday morning. She'll then stay overnight in the hospital (where I'm sure we'll be by her side for much of the day), and we'll collect her Saturday morning/early afternoon so we can drive back home together.

I hope that clears things up (I'm talking to myself as much as I'm talking to you!).


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the day can finally begin

Mom is getting out of bed as I write this. She's been awake for a while, but as you know, there's a difference between waking up and actually getting up, even for those of us not afflicted with cancer. In Mom's case, there's also dizziness to contend with: Dad sits Mom up and holds her in place to give her a chance to reorient herself. The next step (after her helmet has been strapped on) is for Mom to stand up; again, Dad allows her some time to rest before he and she actually get moving.

I heard from Dad that Mrs. Merrill has cancelled her 3PM visit because she's been called into work. Dad will therefore take care of Mom's "morning" prep, eat lunch with her, and head out on two errands: (1) he has to drop off the "loaner" van that was given to us while our Honda Odyssey was in the shop, and pick up the Honda; then (2) he has to drive over to a pharmacy to pick up another bottle of Keppra, Mom's anti-seizure medication. Many of Dad's errands involve some sort of prescription pick-up; some pharmacies are quicker than others when it comes to getting the meds out in a timely manner, while others drag their feet, forcing Dad to wait an hour or more before they produce the meds.

So I've got sandwiches and budae-jjigae to prepare; Dad's helping Mom shower and dress, and we'll all sit down to a late lunch in the next 30 to 45 minutes.

Pastor Jeri, semper fidelis, is still coming at 4PM.


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what happens next

Tomorrow, we've got two visitors: Mrs. Merrill at 3PM, and Pastor Jeri at 4PM. Sometime in the morning or afternoon, Dad and I will have to go out to the local Honda dealership to retrieve our minivan, which needed more repairs than we had thought (isn't that usually how it works?). If Honda calls us while we have guests, we may have to ask that guest to babysit Mom while we step out for a few minutes.

We also need to finalize preparations for Thursday morning, as we'll be departing for New York City once again. We hope to arrive a little after 3PM so as to be able to check ourselves into the same guest lodgings that we were at before, then we'll have to wheel Mom across the street to get her MRI done around dinnertime (6-something in the evening, I believe). Dad and I will spend the night in the hotel, but Mom will spend her night in the hospital, then have her operation between 7 and 8AM on Friday morning. We'll probably wake up very early-- around 5AM-- so as to be there for pre-op.

The procedure will take around an hour, or so we're told. I'm betting it might take longer if they're serious about blasting every single growth they see in Mom's head. At this point, because the carboplatin doesn't seem to have done a thing, I wouldn't be surprised to learn that Mom now has more than three masses inside her skull. From what we've seen of the aggressiveness of glioblastoma multiforme, two months is plenty of time for more cancer to bloom.

I don't know whether Mom will be allowed to stay at the hotel with us until Saturday morning. More likely, we'll spend most of Friday with her at the hospital, watching her rest and foolishly wondering whether we already see improvement in her behavior and awareness.

Late Saturday morning or early Saturday afternoon, we'll all head home. David and Sean are both saddled by work, so they'll be coming up to New York separately. Sean will drive up to Manhattan, arriving sometime Thursday night; David plans to fly in to New York on Friday morning; I don't think he'll be able to sit through the operation with us, but he'll be there to see Mom come out and begin the recovery process. Both David and Sean will leave Friday afternoon or evening; neither can afford to stay long.

I admit I'm on pins and needles about this whole thing, hoping against hope that we've chosen the right path for Mom. It's a massive responsibility, making choices for people who can no longer make important decisions for themselves. The docs at NYP/WC are treating this almost as if it were minor surgery, and I hope that's what it turns out be: catheter in, Avastin spritz, catheter out, period. Radical tumor shrinkage (and reduction in swelling) within a week.

But the chance that something might go horribly wrong casts a pall over this entire procedure-- which is, of course, still an experimental treatment. Mom is part of Phase I of this clinical trial: she's here to help test the method's safety. Before people start rejoicing prematurely, we need to be sober as we consider the potential risks. Inserting a foreign object in someone's brain is no trifling matter, so I'll reserve my rejoicing for when I know that (1) Mom's safely done with her operation, and (2) her tumors have demonstrably shrunk. That might be a few weeks.

Dad's optimistic. In truth, so am I, but it's a cautious optimism. Dad hasn't said so directly, but he's anxious, too. I know this because I asked him, tonight, "What's happening after New York?" Dad, who normally knows what he's written inside his 2009 plan book, said, "I haven't thought that far."

And that says it all. Cross your fingers.


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quiet aftermath

Not that it was noisy when my aunt was here, but the house seems somehow quieter without her. I drove her to the airport, helped her get through check-in, and walked her to the security area. We hugged and said our good-byes, and I once again asked her to consider coming back in January. She seemed amenable.

While I stood outside the roped-off area and waited for my aunt to pass through the checkpoint, a guard sauntered up to me and said, "I'm just curious as to which one's your wife or girlfriend." Not very subtle, that guy: I immediately caught the subtext. You're standing here, large and imposing in your military surplus coat, for a non-terrorism-related reason, I hope? I smiled and pointed out my aunt, who at that moment had just handed her ID and boarding pass to the airline staffer who stood in front of the X-ray conveyor belts.

The guard probably didn't mean anything by what he was doing; I suppose it was his way of doing his job. Perhaps I give off the impression that I'm about to go postal at any moment, or maybe I fit some sort of profile; I don't know. It could be that some people misinterpret my outwardly calm demeanor as a menacingly intent look. Oooh, scary.*

I've found that, even though Korea gets a bad rap for poor treatment of foreign customers at some stores and restaurants (an accusation I find partly true and mostly false after eight years in Seoul), most of the rude treatment I've received has come from fellow Westerners in America and Europe: French staffers at Charles de Gaulle muttering rudely (and assuming I don't understand them), or passport control officers in America who have asked their questions in an impertinent tone of voice.** By contrast, Korean airport staffers have never once bothered me: they've been polite and efficient. Other foreigners' mileage may vary, but that's been my experience.

Luckily, my aunt caught none of this. She was facing away from me when the guard came over. Her reaction to the incident (more an amusing happenstance than a significant event) would have been interesting.

---

*As someone who rates INTJ on the Myers-Briggs personality test, I've read that INTJs sometimes make other, more sociable people nervous because they give the impression that they're staring right through you.

**After getting off the plane at an American airport, one angry-looking female staffer wondered what I had been doing in Korea. I told her that I had been staying with relatives. "And who are they to you?" she grated. I actually stopped and stared at her. What sort of stupid question was that? The fact that they're relatives isn't reason enough to spend time in Korea? What was she looking for? And couldn't she have found another way to phrase her question? "What's YO MAMA to you?" I should've asked her in return. But that sort of retort would have delayed my exit, I'm sure.


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up, up, and away

I'm taking my aunt to the airport around noon. Time flies, doesn't it? Last night's budae-jjigae was a dinnertime success (my aunt, who is a great cook, also complimented me on the amped-up miso soup I'd made for lunch yesterday), which means I'm not fired from my job as resident chef.

We're hoping that Mom's big sister will come back in January to see whatever post-operative progress Mom will have made. In the meantime, we've promised to keep her informed about what happens this Friday.


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more will

Mom woke up late, sometime after noon, and shuffled out to the living room around 2PM with help from Dad. My aunt was waiting for her, as was another relative: the sister of my aunt Deok-hui (the latter being the wife of my uncle John). Sean was also home for a while; he talked with Mom while she was in the bathroom; he later told me that she spoke: he had mentioned his dog Maqz, and she had asked whether he had brought the dog with him.

So Mom might still be riding the wave from yesterday's high. Although her "cone of awareness" remains narrow (it takes a lot to get her attention if you're not in her line of sight), in other ways she seems slightly more engaged in what's going on around her.

I made budae-jjigae for dinner; my aunt loved it the last time she had it, and I'd wanted to make it for her again. Mom had fallen asleep at the couch later in the afternoon, and didn't reawaken until around 8PM; my aunt chose not to eat until her sister had gotten up and taken some Decadron.

Just as she had done at lunch, my aunt fed Mom her soup. I should note, too, that my aunt told me that Mom took over the chore of feeding herself at lunch. I don't know whether she managed the same feat at dinner, but even if she didn't, it's still wonderful to see at least a partial return of Mom's will.

Lastly: our thanks to Pastor Jeri, who dropped by with cookies made by Ann Stover. Rest assured that they'll disappear quickly.


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I gladly eat my words

Mom ended up staying at the Korean Christmas party from 5:30PM-- which is when we arrived-- to almost 10:30PM, an incredible five hours. She's been out of the house for that length of time before (such as when she's had her combined Avastin-and-carboplatin infusions), but this time was different: the party was all about noise and lively interaction, not sitting in a quiet office with an IV drip.

Both Dad and my aunt reported that Mom thoroughly enjoyed herself, and that many of the ajummas beat a path to her. The emcee even took time to highlight Mom's presence so that people could applaud her.

In the end, from what I heard, Dad was right: this was just the sort of medicine Mom needed. She had fun being out with friends and family, enjoying good food, camaraderie, and love. When I saw her after the party, I could tell that Mom seemed tired but buoyant. Most telling of all: my aunt noted that Mom ate her salad all by herself, without any help from my father or anyone else. Dad fed Mom the main course, but Mom's ability to eat her own salad was a moral victory: it came after a depressing week during which Mom seemed to be losing the will to feed herself. I hope the party was a reminder to her that she has a lot to live for, and friends who care deeply about her. All the more reason to get this next treatment over and done with.

Dad says he took a lot of pictures. Some of those shots may find their way from his camera to this blog.


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transformation almost complete

I drove my parents and my aunt to Ulta, escorted them inside, and waited until Mom's makeover started before quietly exiting the store. The makeover took about two hours, most of which I think I spent snoring in the car. When Mom was brought back out, she looked more like her old self than I had seen in months. But for me, the vision gave rise to mixed feelings, because the makeover belied Mom's unreactiveness: her cancer-induced silence and her peppy makeup just didn't add up.

But it may be that Mom was feeling better about herself after her makeover. It was hard to tell what she was thinking as we drove back home, but once we were inside the house again, and my aunt began feeding Mom a second lunch, Mom seemed to offer her now-faint smile a bit more frequently.

We'll be leaving the homestead again around 4:45PM; Dad wants Mom in place to greet people at the Christmas party by 5:30. I hope this doesn't put too much strain on Mom, and I also hope Mom enjoys seeing so many people. I think the plan is for Mom to stay through dinner, so once again, I won't be cooking tonight.


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Mom and the crowd

Saturday went about as smoothly as could be hoped: I picked up my aunt at the airport, without any hitches, and got her back to our house safely. I fielded a call from some Korean relatives (even speaking with one cousin for 20 seconds in my poor German), chauffeured my aunt and my parents to a nail care salon where Mom got a manicure and a pedicure, and bought Chinese food for dinner.

My aunt chose to feed Mom her dinner, which is appropriate, since Dad and I had been taking turns with meal responsibilities. Throughout the day, there was a mix of laughter and tears, and we shared our hopes for a successful outcome to the upcoming surgery. So much is riding on this: Mom's fading mind is at stake.

After the manicure/pedicure session, we took time to marvel at Mom's nails and generally dote on her. We held her hands, talked to her, made faces, and did what we could to keep her anchored in this world. Lately, it seems that Mom has been slipping away faster and faster; for that reason, December 18 can't come quickly enough. Dad thinks it'll be a photo finish-- the race to treat Mom before the final sand grain leaves the top of the hourglass.

It's now early Sunday; Mom will have to wake up earlier than usual in order to be on time for her makeover; later in the day, I'll be driving her, Dad, and my aunt to the Washington Korean Women's Society Christmas party. I won't be attending; Dad will go in with the two ladies, while I'll be parking elsewhere and awaiting his call for a pickup. Today is Mom's day to meet the ladies who haven't seen her since all this began, as well as to greet those who have (often with their husbands) so kindly dropped by over the past eight months.

It's doubtful that we'll stay at the party long; such trips are extremely tiring for Mom, and today she'll be meeting far more people than she's met in a long, long while. I'm betting she'll be exhausted within an hour or two.

There was some debate, within our family, as to whether taking Mom to this party was a good idea at all. I admit I was against it, as was at least one of my brothers. As that brother said, "The party might turn into a crying-fest." Dad didn't see it that way. In his way of thinking, the party would be exactly what Mom needs: before her cancer, she was very sociable (at least with her Korean friends), and this trip would give Mom the chance to feel like part of the community again. Both points of view, pro and con, are legitimate; in the end, it was up to Mom to decide whether she wanted to go. Over the past month, Dad has asked Mom just that question, and she has consistently answered "yes," even as recently as yesterday.

I hope she has fun at the party tomorrow, and I hope the people who meet Mom, who hug her and kiss her and slowly realize that she isn't talking anymore, put on a brave face and avoid treating her as an object of pity. Let this be an occasion for joy, not sorrow. Mom still responds to the emotions of people around her; expressions of sadness might be beneficial for others, but they'll also bring Mom down. Smile, and she'll smile with you-- even though her smile has dimmed almost to nothing.


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meal plan (of sorts)

I've got some ideas for lunch and dinner over the next few days. My aunt is arriving at National Airport in two hours, and will be staying with us until the 15th. She absolutely loved my budae-jjigae the last time she was here, so I'll definitely be making that again. I'll also be making spaghetti bolognese, pesto chicken and pasta, BBQ beef sandwiches, jjajang-myeon, and my amped-up miso soup. I'd try something more risky, like dwenjang-jjigae, but after having messed that dish up while living in Korea, I'll file that under "experimental: do not attempt while guests are in house."


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over 90 minutes

It took me well over an hour and a half to feed Mom her dinner tonight. We had leftover bulgogi, leftover rice, and a fresh cucumber-tomato-feta salad. Mom seems to have lost almost all of her ability to feed herself; if no one does it for her, she stares off into space or watches TV while her food just sits there, untouched.

Strangely enough, Mom appears to want us to feed her; when she's lucid and able to answer yes/no questions, she'll nod "yes" to the question, "Would you like me to feed you?" While this expression of dependence provokes tender feelings, it also stands in sad contrast to how Mom was a merely few weeks ago, when she would chow down her food all by herself, finishing in mere minutes if she was hungry.

I did my best to alternate bites: meat, rice, salad, all in sequence, in an effort to keep dinner pleasant for Mom. She nodded tiredly to some of the questions I asked her, though there was no way of knowing how well she understood what I was saying.

I've often wondered what it must be like to live in Mom's mental fog, to feel myself detached from everyday goings-on, to be so perceptually and conceptually blunted as to lose the ability to grasp the meaningfulness of this or that activity. I want to understand what Mom is going through, but I can't. There's no window into Mom's consciousness; there's only what I can see... and what I can guess.


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the neurologist's report

Dr. Benson looked Mom over this afternoon. His first reaction was that Mom seems to have lost weight, which is likely: months ago, she had sunk down to a very thin 109 pounds; she then puffed up to almost 130 pounds. Over the weeks that followed, she stabilized at a more appropriate weight since the last time the doctor saw her, probably somewhere south of 120 pounds.

The doctor also felt that Mom was exhibiting cognitive decline; she was completely nonverbal with him, and only haphazardly responsive to instruction, but he also saw that she was reacting to faces, gestures, and actions in a way that indicated situational awareness.

We told the doctor about Mom's decline since her all-day sleep episode from about a month ago. He said this might actually have been the result of a seizure. The only way to determine precisely what's going on in Mom's head, especially as regards how much her language centers have been affected, would be through a test involving the touching of a wire directly to the exposed brain to see how the brain reacted to electrical stimuli. As we all agreed, this option was out: Mom's blood count is too low for us to risk opening her up, which is another reason why we like the new clinical trial Mom has entered: the only piercing of the skin will occur at whatever point the microcatheter is inserted (most likely the femoral artery).

We brought Dr. Benson up to speed regarding the new treatment; he agreed that it sounded like a reasonable course of action, but he gave us a general caution about taking extravagant measures that would yield few if any benefits. We've promised to give him a pile of data: the 10/28 MRI images from NCI (he was supposed to get these, anyway), the MRI images that will be done on 12/17, and the news articles about Dr. Boockvar's and Dr. Riina's research into intra-arterial Avastin delivery. Dr. Benson is going to become much more involved with Mom's case after the 12/18 operation: barring a messy and invasive test, the only thing we'll have to go on will be post-operative MRIs and clinical evaluations of Mom's cognitive abilities.

The most important thing I learned during our visit to the doctor was that an intracranial edema, if it's in a person's head long enough, can cause permanent brain damage, much the same way that constantly sleeping on the same arm can eventually cause permanent nerve damage. Mom has been living with her edema for weeks, possibly months. What this means is that Drs. Boockvar and Riina might succeed in shrinking Mom's tumors, but there's a chance that Mom will still be as cognitively impaired as she is now. We won't know until the procedure's been done and the Avastin has had time to work on the cancer.

That puts something of a damper on our hopes for what the docs at NYP/WC can accomplish for Mom, but we have to remain positive: we don't know anything for certain yet, and it'll probably be sometime in January before we know more.

And that's when Dr. Benson wants to see Mom again: mid-January. He told us that he thought we were doing a great job of caring for Mom. I was glad to hear that. Before he left the room, the doc shook everyone's hand, including Mom's. She understood that this was good-bye, at least for now.


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off to the neurologist

Our appointment with Dr. Benson, the neurologist, is at 3PM, so we'll be out of here around 2. I'll be interested in what he has to say after he examines Mom.


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busy weekend, busy week, busy Christmas

Tomorrow, Mom's got an appointment with Dr. Benson, her neurologist. On Saturday (the 12th), Mom's big sis is arriving from Texas, and about 30 minutes after my aunt arrives, Mom is going for a manicure. The following day, Sunday the 13th, Mom has her big makeover, just in time for the Washington Korean Women's Society Christmas party later that same day.

My aunt will be staying with us until the 15th; after that, we have a day to prep for our trip back up to NYC on the 17th. Mom's surgery will take place on the 18th, and assuming all goes well, we'll be driving back down to Virginia on the 19th.

That doesn't give us much time for Christmas prep, none of which has been done-- no tree, no cards, no cookies, nada. It'd be nice to do something memorable for Mom, something not slapdash and last-minute in nature, but finding the time and energy is going to be difficult.

The very next day after Christmas, we've got other relatives from Texas coming over; they'll be staying in northern Virginia a few days, I think. As a result, Christmas Day might end up being "Prep the House Day" as well. Heh.


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whirlwind communion

Pastor Kim and our fellow congregant Beth Kline came over today to visit and administer communion... but communion happened in the narrow slice of time when I was downstairs tending to some laundry! Even Dad was marveling, afterward, about how quickly it went.

Still, our thanks to our guests for visiting. I learned a lot about horses and stables today.


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possible static from NCI

We are, finally, hearing something from NCI regarding our new plan to take Mom to New York for treatment. As we expected, Dr. Fine's office has reservations about having Mom treated this way; they say they're worried about the necessity to open the blood-brain barrier, and about other possible problems. Personally, I think NCI is getting back to us way too late for there to be any meaningful discussion. In any case, Dad relayed NCI's reservations to Dr. Boockvar's office, and Dr. Boockvar himself responded in writing to assure us (and, perhaps, the NCI team) that the blood-brain barrier issue isn't a problem.

Whom to believe when you're in such a position and you aren't a cancer expert yourself? For me, it boils down to two questions:

1. If we allow Mom to undergo treatment X, are we killing her?
2. If we pass Treatment X up, can we say that we've done everything possible for her?

When these two questions are juxtaposed, all the other, more detailed, ethical questions arise from them. But upon these questions hang all the law and the prophets, if you will.


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what care means

Allow my dad to demonstrate the meaning of care:

The above two pictures illustrate the preferred method for picking Mom up so that she can stand on her own. Trying either to heft her by her armpits, or to lift her by hugging her rib cage, only causes her pain.

You may also have realized that the above-illustrated method both looks and feels a lot like a loving embrace.

Mom had the same thought. What the photos don't show is that she held that position longer than she needed to, and patted Dad on the back.

We love you, too, Mom.


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