Saturday, September 5, 2009

Saturday

Mom's awake, washed, and eating lunch with Dad and me; she seems to be doing pretty well, all things considered. Over the past two weeks, we've been worried about Mom's headaches, but she hasn't reported any such pain more than twice.

Today, I'm making a day of doing laundry outside on our deck, third world-style: the washer is completely dead. Although we've had a kind offer from one of Mom's friends to do laundry at her house, I'm actually enjoying the slow, primitive process of doing the laundry in a basin, rinsing it and wringing it by hand, and hang-drying it for a couple hours before tossing it into the dryer-- which still works fine.

My new iMac looks fantastic. Alas, I can't connect my old hard drive to it: the new Mac has sockets of every description, except the one socket I actually need. I laughed when I discovered this last night. I also need to confer with Dad about how to get the computer connected to his wireless router; we've got a secure connection requiring a password, and the last time I went through this procedure-- around Christmas of last year-- we had to visit the Verizon site through the hard line and do some digging around in Dad's paperwork before we could get the connection established. I guess neither of us bothered to write the password down: at the time, I assumed that my netbook was going to be my only computer for a while, so we both assumed the password would be unnecessary. Bleh. This time around, I'll write the procedure down.

But right now, I'm done with lunch, and need to get back to the laundry.


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what we look forward to this week

Coming up this week:

1. A visit by two of Mom's Korean friends. (More may be scheduled. Keep 'em coming!)

2. A visit from the washing machine repairman. Our washer has been doing laundry three times a day for reasons that I am still loath to mention on the blog (though as I said a while back, we're eventually going to have to talk about what's been going on).

3. A visit from Mr. Jeong, the contractor in charge of our house's renovation. We have a couple small problems that need looking into (drawers and cabinets), and one large problem as well (dining room air conditioning).

4. On Friday, 9/11, we'll be taking Mom to the National Cancer Institute for the start of the aggressive, second-line phase of her therapy. The gloves are off now; standard therapy has been tried, and we've patiently taken Mom through the initial steps. Now we move to the harder stuff-- Avastin, or whatever other therapies seem appropriate. So on 9/11, Mom will have blood work done, and an MRI scan will, at long last, be performed (the last one was the controversial scan of July 20). Five days after that, we will go as a family to listen to Dr. Fine (or his cohorts/minions) to find out what our options are. One thing I plan to stress to these new docs is that Mom is not a set of statistics. I don't mind the idea of enrolling Mom in a clinical trial, but we'll need some indication that she'll be put into a trial that benefits her, not one in which she might end up as part of a control group receiving no treatment. That's my own personal Line of Death: Mom will not be part of a control group. And I want similar caution to be applied even to non-experimental treatments: before the docs commit to a certain established therapy, I want to be sure that they've considered Mom's own probable response to it. Avastin is a case in point: there's no use in putting Mom on Avastin if it turns out she's one of the 50% who don't respond to it. Test her first, then proceed-- don't assume she's "likely" to respond to Avastin just because the statistics say so.

More items will be added to the calendar as we think of them, but these are the major activities for now. For myself, I need to study up on the various therapies I've discovered. 9/11 isn't that far away.


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Friday, September 4, 2009

home again

We're safely home, thanks to all the folks who took care of us and helped send us on our way: my aunt, my cousins Marie and Mark, my uncle John and my aunt Deok-hui. The latter two met us at the airport today. Tears were shed, hugs were exchanged, good-byes were proclaimed aloud and whispered weakly. Everything went smoothly in terms of baggage checks and security: thank goodness for the wheelchair lane.

Thanks as well to my brother Sean, who arrived at National Airport to pick us up this evening, despite having a nighttime rehearsal. We're home, we're settling back in, and at least for now, all is as well as can be.


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departure

It's a little after 9:30AM, Texas time, as I write this. We'll be leaving for DC in a few hours, and will be back home in northern Virginia-- barring delays-- around 7 or 7:30PM. Mom held up surprisingly well during the trip down to Texas; I'm hoping she'll be fine during the trip back. My cousin Mark told us that it ought to be possible to bypass the huge lines through security because of Mom's condition. Here's hoping.

It's been a restful few days for me; Mom's been doted on by her sister, and I had the chance to go out and about for a few hours the other day-- something I rarely do. I don't know how restful this trip was for Dad; he still had to wash and prep Mom every morning and evening, and like me, he remained on standby alert should anything happen.

Time goes so fast. Our departure day is already here. At least Mom had the chance to see her sister one more time.


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Thursday, September 3, 2009

third day in Texas

Mom's still sleeping. My brother David is heading back home later today; I'll be riding with him out to the airport. The rest of us-- Mom, Dad, and I-- will be heading back tomorrow.


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Wednesday, September 2, 2009

for future reference

These were the results when I typed the search string "fiber optic laser" + "brain tumor" into Google. I have yet to pore over the links, but several seem promising.


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in Texas, doing fine

Yesterday's flight out to Texas went as smoothly as we could have hoped for. Sean arrived at our house early; he was the designated chauffeur. We got to the airport and Dad checked us in with plenty of time to spare. One of the morbid benefits of Mom's condition is that we're now among the folks who get to board the plane early, so we took full advantage of that to amble on down the jetway before anyone else did.

The flight itself was comfortable; we arrived in Houston early. Finding the baggage claim area and retrieving our bags took only a few minutes, and our relatives were outside waiting for us when we stepped out of the terminal. The drive to my aunt's house was shorter than I remembered it, and Mom was comfortable the whole way. Dad drove my aunt's car, however; she was crying too hard to drive.

Since our arrival, we've had the chance to see my aunt, my cousin Mark, my (second?) cousin Darrell (well, he actually saw me sleeping yesterday; I didn't see him), my cousin Marie, as well as my uncle John and his wife, my aunt Deok-hui. Since our arrival, my aunt has fed us far more generously than we deserved (her cooking puts mine to shame), and we've spent our time just relaxing. My aunt's house is large enough to accommodate all of us comfortably, though Cousins Marie and Mark have been bumped from their usual billets and are sleeping on the floor and on a cot, respectively.

Tonight, our second night in Texas (and my brother David's final night), we took Mom out for a walk when it got dark. The air was humid, but far cooler than during the day.

I've been having fun catching up with the relatives, lounging around, driving briefly about town, and getting to know the three dogs. More important, though, is that Mom seems happy to be here. That's what counts, both for her, and for her big sister.


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more tantalizing nanotech

Using "nanobees" as a delivery system for bee venom that targets cancer cells. The article doesn't explore the potential dangers for brain cancer patients, though.


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Tuesday, September 1, 2009

on our way

We're at the airport, our bags are checked, my brother David's already on a separate flight to Houston, and we've got 80 minutes to get through security (the flight departs at 12:20PM). Lots of time to wait before we board.


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fiber optic laser surgery

We'll be looking more deeply into the question of fiber optic laser surgery over the coming days; simply finding basic information about it is difficult. Here are some links, the results of an initial search.

1. The recent ABC News video about new technology being brought to bear against various brain cancers, which first introduced me to the notion of fiber optic surgery.

A word of caution: as we learned from Dr. Leiphart, Mom's neurosurgeon, Mom's GBM grew through the corpus callosum, which serves as a bridge between the two hemispheres of the brain. This in itself is a serious problem: you cannot outright remove the corpus callosum, nor can you surgically excise (or otherwise damage) major parts of it simply to rid it of cancer. Whatever can be done with fiber optic surgery-- if we choose to go that route-- will probably be done on other parts of the tumor, and only if there is a high probability of minimal damage to healthy brain tissue. This surgical technique, only recently approved for use, is still a young technology; it offers no guarantees, and may bring its own inherent dangers to the table.

2. An article that offers tantalizing hints about what fiber optic laser surgery is like, and what it can, potentially, do.

3. A set of papers about lasers in neurosurgery.

4. An ad for a certain type of laser surgery equipment. Even though this is an ad, it does provide a great deal of information about what fiber optic surgical lasers are and do.

The above four links represent a jumping-off point for further research. I admit I'm curious to learn more about this. The above-linked article (Link 2) seems to hint at how minimally invasive this sort of surgery can be. That's what I want to hear, but I'd still need to know a lot more: Mom's tumor crossed over from the left to the right hemisphere early on, meaning that the site to be treated probably can't be reached through the current hole in her skull. The article says that the entry point for the fiber optic device requires only a tiny incision for ingress, but it's not clear whether this will be the case for all patients and all cancers.

Our family will need to be prepared to gather second and third opinions about this and other potential techniques. There will eventually be a time when we all have to bow out gracefully, but that time is not yet. Not yet.


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Monday, August 31, 2009

gracias a todo el mundo

My thanks to the folks who have wished me a Happy Fortieth on Facebook and via email. On Facebook, I wrote:

Kevin Kim was recently informed that life actually begins at fifty. Oy... ten more years as a fetus.

Here's to the next decade of life. Many thanks to my best buddy Mike for his tribute, and to my French brother Dominique for sending me his gâteau virtuel. Truth be told, I don't particularly feel like celebrating, given all that's going on, but I appreciate the gestures of friendship and love. Thanks as well to Pastor Jeri for calling and wishing me a happy birthday.


UPDATE, 8:53PM: Well, I'm speechless. My family got me a sleek new 20-inch iMac! I had actually been wanting to buy a much smaller-scale Mac Mini, but this far, far exceeds my expectations. The family also gave me some cards, a cake, and one of my favorite flavors of ice cream-- mint chocolate chip. Everyone got a hug from me in return (including Mom, who was in on the plan), but it somehow doesn't seem to be enough. How do you repay this sort of love?


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back from two walks

Dad and I took Mom out for two walks today-- first to Fort Hunt Park, where Mom did her usual several hundred yards, then out to the riverside in Old Town Alexandria, not far from Jones Point, where Mom managed another several hundred yards on a wide pedestrian area behind a rich neighborhood. We strolled alongside the Potomac next to swaying fronds of hydrilla, looking out across the water at birds perched on pylons, and peering at some of DC's bone-colored landmarks in the distance.

Mom handled herself just fine during her two walks, though she had to pull herself up the stairs by grabbing the railing and heaving herself upward, hand over hand. It was just five steps, but Mom has been weak lately, which probably explains why she's been sleeping even later than normal. Still, despite the weakness, I'm proud of how much she walked today. The weather was, luckily, perfect for just such strolling.


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Mom's up

It's 2PM and Mom's only just now getting out of bed. Dad's going to get her ready; once she's washed and dressed, she'll come out to the living room, and I'll serve her lunch.

Dad just asked me to remind everyone that this is the reason why we keep telling people to call ahead before coming: you never know what Mom's daily schedule will be; Mom herself doesn't know. Her disease comes fraught with its own mystery and danger-- each GBM is genetically unique, and each patient responds in her own unique way both to treatment and to the disease's cruel progress.

We had to cancel Pastor Kim's 2PM visit for this reason. In his case, the visit had been planned days ago, but we still had to cancel: Mom didn't get up until a minute or so ago, and it takes her the better part of an hour to become presentable enough for her adoring public.

So please bear with us, and don't be resentful that you have to call in advance. Sudden schedule changes are part of what we have to deal with on a daily basis. Please consider Mom's and our situation; don't do the impulsive, inconsiderate thing and drop by unannounced.

Thanks.


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awake but in bed

Mom's awake, but she's still in bed and is contemplating getting up. Dad's out on a quick errand and will be back in a few minutes.

It's cool enough outside that we've killed the air conditioner and have left the windows open throughout the house. Were we in Nantes, France, we could do this with little fear of mosquitoes and other nasty creatures flying in; such bugs are rarely a problem in Western Europe (my experience in Switzerland was similar). Here in ol' Virginny, though, you don't open a door or window without first having some sort of mesh in place. Our sliding glass door is currently open, but the screen door has been closed.

I know from harsh experience that Seoul in summer is far, far buggier than Virginia-- the mosquito problem is horrific (big city, plenty of standing water), and the Koreans do the European thing by not placing mesh over their windows (there are exceptions). When I lived in Seoul, I almost never opened my windows during the summer; I generally waited until late fall, when the mosquitoes had been beaten into submission by the temperatures, to open my studio/dorm to the outside world.

Tomorrow, we're off to Texas, so today is a day of trip prep. We'll be gone for only a few days, so there isn't much packing for me to do, but Mom's packing requires some care and forethought.

Hard to believe we're on the threshold of September. I can't wait for fall.


UPDATE, 1:25PM: Mom's covers are back on and her eyes are closed. She's napping. Pastor Kim is supposed to visit at 2PM; I may have to cancel that, as Mom hasn't had time to wake up, wash, and get ready.


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Sunday, August 30, 2009

gracias

Our thanks to Pastor Jeri for visiting today, and to Mrs. Anna Stover, whose chocolate chip cookies Jeri brought to us (many of which are already gone!).


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Mom at the park

From yesterday:







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off to Texas on Tuesday

Just a reminder that we'll be heading to Texas on Tuesday. Dad, Mom and I will be staying in Conroe, at my aunt's and cousin's house, for three nights. David will be departing for Houston on a separate flight; he's staying only two nights, then heading back alone on September 3rd. Sean has agreed to chauffeur Dad, Mom, and me to the airport on Tuesday; he or David will pick us up on the 4th.


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morning in mourning

Dad's off to a funeral for an old coworker who died of lung cancer. Meanwhile, I'm watching the homestead while Mom sleeps.

UPDATE, 1:16PM: Dad's back and Mom's still in bed.


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