Saturday, May 16, 2009

the return of initiative

Little by little, Mom is recovering more of her old self. As I've mentioned before, she's shown an increased interest in meal prep over the past week. This morning, she apparently went into the kitchen, dug around the garbage disposal, and pulled out a fetid mass of vegetables that the disposal had failed to grind up. I'm assuming she recognized the causal connection between the sink water's slow draining, the disposal's having been used, and the unseen veggies. (Dad's the one who told me about Mom's exploits.) Again, this might seem like a mundane action, pulling gunk out of the sink, but it has to be balanced with the fact that Mom is starting to take even more interest in her surroundings, and is making causal connections.

Later in the day, before my brother David had to leave for work (David stayed overnight), Mom offered to give David a back rub. The poor guy often works seven days a week, and is constantly tired. The fact that Mom felt an imperative to do something for him-- not just verbally offer sympathy-- shows us another area in which she appears to be improving.

Mom is, however, still somewhat stressed by the notion of people visiting her. One of our next-door neighbors caught me while I was mowing the lawn the other day, and told me about how life was after her husband (who'd passed away in 2003) had a major stroke. He'd become depressed and was, for a long time, unwilling to leave the house or see any relatives. According to my neighbor (who is 82 and going strong), his feeling was that he wanted people to remember him as he was, not see him in his current state. My neighbor said she'd probably feel the same way, and I told her that my own sentiments were similar.

The imperative to "remember me as I was" is partly motivated by pride, but there's also an unselfish component there: people, like Mom, who have spent so much of their time being helpful to others want to continue to be helpful-- in this case, by not being a burden to others. One way to accomplish this is by ensuring that the circle of caregivers remains small. Mom doesn't mind that her kids come over to the house and help with chores; if she's unhappy about the prospect of visits from other people, it's not because she suddenly dislikes them: it's because she doesn't want to impose. Most potential visitors recognize this and are sensitive to Mom's current state. (And thanks to all those who take the time to call in advance. Your sensitivity is appreciated.)

In any case, I'm happy to report that Mom continues to improve. Her therapy starts this coming week on the 21st; on Monday, we'll be visited by relatives from Texas, so we're prepping the house this weekend. I just heard, however, that Mom has expressed a sudden desire to go out and about, so we're dropping everything-- right this moment (2:10PM)-- to take a nice jaunt out to Skyline Drive. That's right: Mom's the one who wanted to do this. How could we say no?


what real giving is

Mark 12:38-44

As he taught, Jesus said, "Watch out for the teachers of the law. They like to walk around in flowing robes and be greeted in the marketplaces, and have the most important seats in the synagogues and the places of honor at banquets. They devour widows' houses and for a show make lengthy prayers. Such men will be punished most severely."

Jesus sat down opposite the place where the offerings were put and watched the crowd putting their money into the temple treasury. Many rich people threw in large amounts. But a poor widow came and put in two very small copper coins, worth only a fraction of a penny.

Calling his disciples to him, Jesus said, "I tell you the truth, this poor widow has put more into the treasury than all the others. They all gave out of their wealth; but she, out of her poverty, put in everything-- all she had to live on."

The scriptural lesson isn't about dumping all your money into the church: the lesson is, instead, about what real giving means. Real giving is done in a spirit of true selflessness. Real giving doesn't ask for thank-yous. Real giving is about commitment-- large commitments of time and presence. How easy it is to give from one's bounty, to pat oneself on the back for a Job Well Done, to expect some sort of praise after having made a show of giving. We all do this sort of thing, and that's what makes such gestures merely common, not noble.


Friday, May 15, 2009

dinner elf

Mom wandered over to the kitchen and helped out with dinner today, washing some fresh parsley and tomatoes for me. I did the rest, but as with lunch, it was great to see Mom actually wanting to get back into the household bustle. Finding more such ways to recruit her, to keep her plugged into the pulse of domestic existence, is, I think, crucial for her intellectual, psychological, and physical health. Maqz the chihuahua keeps her company, and that's good, too, even though he's taken to pooping on our downstairs carpet. (Is it time to ship him off to the Dog Whisperer? And did anyone see that hilarious Dog Whisperer parody on "South Park"?)

Dinner was a chicken-and-couscous affair, with healthy chunks of chicken tossed in butter and olive oil, seasoned and browned, with halved figs and raisins added during the latter part of the cooking process. Once the heat was turned off, I tossed in some halved red seedless grapes. The couscous, meanwhile, was done up with boiling chicken stock plus a bit of butter and olive oil, and I kept the cold ingredients-- feta cheese and chopped tomatoes in olive oil/balsamic vinegar dressing-- off to the side. When it came time to plate, the couscous went down as a bed with a caldera in the middle; the hot chicken mixture went into the caldera, then the tomatoes and feta were added to the top of the chicken. Very tasty. I should have taken a picture.

I'm not sure whether Mom feels ready to cook unsupervised. She interrupted the microwave defrosting procedure twice, each time having forgotten what was going on in the oven. She may have sensed her own incapacity; after she washed the parsley and tomatoes for me, she said, "Tell me if you need me for anything else," and went back to the TV.

Sean visited earlier in the day; he brought his own lunch, so he didn't witness Mom's activity in the kitchen. He also left before dinner, so he missed Mom's later performance, too. But Sean stayed by Mom's side the entire time he was here, watching TV with her, talking with her, and enjoying Maqz's presence as much as she did.

Post scriptum: dinner wasn't the only source of bounty. Our fireplace mantel is now close to overflowing with cards (thanks, as always, to all the kind folks who have sent them). We appreciate all the well-wishes, even though I feel a pang whenever someone expresses hope for Mom's complete recovery. There is no complete recovery from GBM, but I understand the optimistic and charitable spirit in which such sentiments are expressed. For us, for this moment, it's enough to look forward to Mom's next birthday and to the next Mother's Day. We've got one year to reach those milestones. From now until then, it's all about the little milestones, like having Mom rediscover her kitchen savvy. Mom's star turn-- as resident dinner elf on Thursday evening-- was a good beginning.

Mom's coordination has also greatly improved over the past month. She no longer flails her arms the way she did during her first week or so back home from surgery. Now she needs to work a bit on her balancing problems. For that, she needs to walk around more. We're working on that. Some of Mom's close friends want to take her out and around, and I think that's an excellent idea. First, it keeps Mom away from the TV and provides her with natural ambient stimuli. Second, being outside the house means she can't retreat from her situation to find comfort on her living room couch; she'll have to deal with reality. I hope I don't sound like a sadist, but I do feel Mom needs a change of scenery, plus more opportunities to interact with live people. TV is a poisonously passive medium; "interaction" isn't the word I'd use to describe humanity's relationship with the goggle box.


Thursday, May 14, 2009

conversation with Dr. Fine
(NIH/NCI, Neuro-Oncology Dept.)

Please come back to this post periodically, as I upload the transcript of the conversation in segments. As I discovered while doing transcription work in Korea, it takes me about 7 hours to write up and polish 30 minutes of dialogue. The exchange with Dr. Fine, et al., of the NIH/NCI Neuro-Oncology Department lasts about 35 minutes. I began recording this particular segment after the conversation had already begun, but the missing material is little more than introductory pleasantries.

DR. FINE (to Mom): Now that you know that there was a problem, can you date back any symptoms further than... a couple months...?

MOM: I can't go too far.

FINE: You can't go back too far?

MOM: I was doing fine, and then, suddenly, like, sixteen [i.e., April 16], I just, you know, kinda little bit lost or something. And so they [i.e., the men of the family] said, "You gotta go to the hospital." And, you know, I went to the hospital.

FINE: In the couple months building up to that, nothing? Did you notice anything?

DAD: Nothing, except for what I thought might have been something a little bit less than usual, and I was saying to them [i.e., the sons] before, conversationally, where there seemed to be less conversation-- in other words, not so much initiation, but simple answers, to the point where, historically, I would have thought, "Uh-oh, I'm in the dog house for some reason," you know, and when I asked her directly that, she said, "Don't be silly, don't even talk like that." So right away, that was out as fast as she was saying that. So it had to be something else, but nothing else happened, and I wasn't putting, if you will, two and two together until Kevin, you know, mentioned what his experience was on Thursday morning. And I'm sure that Dr. Chowdry and, uh, the other doctor [Dr. Iwamoto] mentioned to you about it. So, based on that behavior... yeah.

FINE (responding to page): Can you give me one second? I need to get this. Thanks. (Exits.)

DR. CHOWDRY: So the CT, uh, the MRI that we do after the radiation and Temodar [chemo drug] is gonna be the baseline.


CHOWDRY: That is the baseline that we are gonna compare to when we do Temodar and then get the MRI every two weeks, OK? So this [i.e., the CT and MRI images from Fairfax Hospital] is not what we are gonna look at, what we just looked at today.

DAD: 'Cause you're gonna start--

CHOWDRY: We're gonna start post-radiation; that's our baseline. So every time we go back to...

DAD: So post-radiation is when everything starts. Well, yeah, that's logical. I understand that, 'cause that's when your research starts, and that's what happens there, to see if there's been any change.

SEAN: Did you say after she's done with radiation?

CHOWDRY: (inaudible, but probably a "yes")

DAD: Now, is that the full course of radiation, or the first 42 days?

CHOWDRY: The total course of radiation--

DAD: Six months or whatever it is?

CHOWDRY: Let Dr. Fine speak; he'll fully explain it.

FINE (reentering the room): Yeah, so-- I know you've spoken to a number of doctors. Lemme kinda' just give you my perspective on this, as someone who's seen about sixteen to twenty-two thousand patients with this disease over the last twenty years.

The first thing I should tell you is that the surgery you had was outstanding. It was a superb job, and I don't think there's any more role for any additional surgery at this point, and that's saying something, 'cause we see thousands of folks from all over the country, and many times, the surgery they get is sub-optimal, and we often have to do a second surgery. But thankfully, in your case, your surgeon [Dr. Leiphart at Fairfax Hospital] did a great job, so that's important.


FINE: The kind of tumor you have is a called a "glioma," and a glioma is what we call a primary brain tumor, meaning it's a tumor that starts out in your brain. It doesn't come from anywhere else. The good news [is that] it doesn't go anywhere else. You don't have to worry about it spreading to your lungs or your belly, so that's good. But obviously, it's in a pretty important part of the brain.

DAD: Or other parts of the brain?

FINE: Well, so, that's what I was gonna say-- talk about. The problem with this tumor is it's not as simple as having a lump in your head. If it was as simple as a lump in your head, then in the hands of a good brain tumor neurosurgeon, you could just kinda' scoop it out, like a plum in a pudding, and be done with the problem.

DAD: Right.

FINE: What this tumor is actually made up of is many, many millions of individual tumor cells. Each of these tumor cells kinda' lives a life of its own, and the major things these tumor cells can do is-- first of all, they can move within the substance of the brain. They don't jump around, but within millimeters, they can kind of move in between the normal cells in the brain-- what we call "infiltrate" the brain.

And the other thing these tumor cells can do is they can divide, so one becomes two, two becomes four, four becomes eight, and that's essentially what we call the growth of the tumor.

And the pattern of these tumor cells, relative to how they sit in your brain, is somewhat analogous to... if you think of a situation where-- if you think of your brain as this beautiful lawn of grass, and each one of the normal nerve cells in the brain is like a blade of grass, each of the tumor cells is kind of like a grain of sand, and it's as if somebody threw a hand of sand on your lawn. If you keep with that analogy, what might you end up with? Well, you'd probably have a pile of sand, and that's actually what your surgeon removed, appropriately. Got rid of that pile of sand, so that, you know, 90% of the grains of sand, the tumor cells, are removed.

But in keeping with that "throwing the sand onto the lawn" analogy, what you're also gonna end up with is some grains of sand flew over there, flew over there, flew over there, and it's all mixed in, now, with the normal lawn, so that you can't even see those individual tumor cells. So if you physically wanted to remove every last tumor cell, you'd essentially have to pull up the lawn. Well, we don't want to pull up your lawn, because your lawn's pretty important stuff: it's your brain. We can't do that. so the strategy for treating this tumor is to do exactly what's been done so far. There's a pile of tumor cells-- which there was-- remove it, which in your case, that's great, 'cause we got rid of at least 90% of the tumor, if not more.

But the rest of the tumor cells now are so intermixed with important brain tissue that we don't have the luxury of just being able to take the whole thing out without causing irreversible and unacceptable damage to you. So we have to figure out a way of killing off those last few tumor cells without hurting all the intervening normal tissue.

And we've made a lot of advances in this field.

[stopped at 00:06:50; more to come]


special meal

Lunch today was the remains of a Costco rotisserie chicken, multi-grain rice, Korean seafood soup, and a mess of Korean side dishes. Nothing special for a Komerican family, right? Lots of spicy leftovers.

But today, it was Mom who went to the fridge and brought out the meal's elements, Mom who plated those elements, Mom who asked whether Dad and I had enough food on our plates.

Nothing special? Considering all that's happened, I'd say today's lunch was one of the best I've ever had.


Wednesday, May 13, 2009


We're back from our trip to Fairfax Hospital. The meeting with Dr. Tonnesen went well; I recorded that session, but will probably offer only a summary of it. Most of the information we heard today amounts to a review of what we already learned during trips to the National Cancer Institute and to the M.D. Anderson Cancer Center in Houston.

Mom also had her radiotherapy mask made; the procedure involved the making not only of the mask, but also of the neck mold, which is shaped to Mom's dimensions to allow her head and neck to settle as comfortably as possible in an inclined position. The goal of all this is to allow Mom to remain comfortably still during the radiation treatment. As I noted in a comment to my brother in the previous post, I must have misunderstood the mask's purpose: while the mask is indeed there to aid in the precise aiming of the radiation, it is not a surrogate for Mom's face: to the contrary, it is to be worn during every treatment, and its sole function is to keep Mom still.

Mom is slated to begin treatment on May 21. This is currently a tentative date, but it's very likely to be the official one. Her radiotherapy will occur in the early to mid-afternoon for six weeks after the start date. Dr. Tonnesen wants to take "baseline" scans a couple months after the treatment is over, but we'll be taking Mom to NCI right after the 6-week treatment to see Dr. Fine and his people; they'll be scanning her to create their own baseline. I informed Dr. Tonnesen of this, and he said that that would be no problem, even though the NCI scan would be occurring so soon after the radiation.

Upshot: the ball is rolling. Mom knows to expect major, patchy hair loss to begin sometime around the third week of radiotherapy. She also knows to expect a long list of possible side effects resulting from the radiation and/or the Temodar treatment (I need to review that list; we have it on a sheet they gave us). We'll all be there for her during this trying period, but what this means for friends and non-immediate family is that it will be all the more important to plan their visits instead of just dropping in suddenly. Mom is likely to be very tired, especially during that initial 6-week period. Dr. Tonnesen noted that, during that time, many patients seem almost to be regressing instead of progressing, but that this is a normal part of the process.

OK... gotta go make dinner. More later.


an example of the radiotherapy mask that will be molded to fit Mom's face (Dr. Tonnesen's arm in pic)

Sent via BlackBerry by AT&T

going soon

We're off to Fairfax Hospital for Mom's 1PM appointment with Dr. Tonnesen, the radiologist. At 3PM, Mom has another appointment in a different building, this time to get a cast of her face made. The cast will be turned into a sort of mask that will be used as a contour guide to aid in the precise aiming of the radiation. The mask allows the docs to practice their aim without directly involving Mom.

More later.


Tuesday, May 12, 2009

pelouse tondue and other things

Dad and I hacked away at our unruly front and back yards today, starting around 10AM and working until, oh, a few minutes ago. While both yards have essentially become a mix of weeds (there's very little actual grass there, but I was comforted to note that many of our neighbors are having their own clover, dandelion, and crabgrass issues), the buzz cut at least presents passersby with the illusion of orderliness. About one or two weeks from now, we'll probably have to do it all again.

Personally, I'm not a fan of lawn care, not because I hate the work (on the contrary, I generally find it meditative, like washing dishes), but because it seems to be one of those vain human activities that perpetuates a "man versus nature" dichotomy. Alas, the imperative to care for one's own lawn comes from the neighbors: allow too many dandelions in your yard, and your neighbors will worry about all those seeds wafting over to their own lawn. Even if you don't "keep up with the Joneses" in terms of what technical gadgets you own, you have to keep up with them when it comes to lawn care. And that's vanity, too: maintaining appearances for the neighbors' sake. Such is suburban life.

Mom saw me come in after my sweaty effort (I did the mowing and grass-bagging; Dad did the trimming and stick-bagging; he also combed the back yard for any debris left over from the renovation). When I declared I was done and that both lawns had been mowed, Mom shook her head and "tsk"ed me.

I'm getting better at decoding what this new Mom means when she does this sort of thing. Because of the damage to her frontal lobe (if you saw the post-surgical MRIs, you'd see just how much had been removed from the left frontal lobe, and even partially from the right frontal lobe), Mom's inhibitions have been somewhat reduced. Whatever her first thought is, this is what burbles to the surface of her consciousness and gets expressed. "Tsk-tsk," in this case, refers to the grungy state I'm in and the effort I must have put into the yard work. Were Mom capable of more complex, nuanced reactions, she doubtless would have followed up with her normal "Thanks."

Despite understanding all this, I deliberately asked Mom why she had "tsk"ed me. I often pepper her with occasional "why" questions, because I want the undamaged parts of her brain to start to pick up the slack, to do some cognitive heavy lifting, to make Mom once again aware of-- and responsive to-- the causal connections between events. "Why" provokes "because," and "because" requires elaboration of the initial thought. As a language teacher who spent eight years in Korea, I quickly discovered that yes/no questions were death in the classroom (a fact also known by American mothers who try to ask "tween" and teenage children about their day). To provoke thoughtful responses, you have to stick with "wh-" questions.

Mom's response to my "why" question was silence, which has been par for the course since her operation. I don't care that she was silent this time; my hope is to keep at this problem in a gently persistent way until we achieve some minor breakthrough.

For those who are curious about how all this has affected Mom when she's in Korean-speaking mode: there's no real difference. Because she's a fluent* speaker of English, her performance in both languages is about the same (changing back and forth between Korean and English during conversation is what linguists call code switching). Asking "why" in English or asking "wae" in Korean will elicit the same reticence in Mom.

Tomorrow, we're off to Fairfax Hospital for Mom's appointment with Dr. Tonnesen, the radiologist in charge of the radiotherapeutic aspect of Mom's treatment. Mom gets the cast of her face made tomorrow as well; it's possible that her in-tandem radiation and Temodar treatment will begin the following day. If not Thursday, the I'm guessing it will all start the following Monday.

Once Mom's routine has been set, I need to start looking for work. Being home like this is a financial burden on the folks (large guys eat a lot and have piles of laundry), and I've been jobless since the second week of April. My original intention had been to quit the proofreading jobs and give myself a free week to prepare more comfortably for the upcoming walk; I quit work around April 10, with the intention of leaving for the Pacific Northwest on April 18. Since Mom's symptoms manifested themselves on April 16, things have veered-- like the new "Star Trek" movie-- into an alternate time line. We are all now living an unanticipated sequence of events.

But money counts, and I need to be working, if for no other reason than to service my own monthly debts and keep myself from becoming too much of a burden to my folks, who are still smarting from the house's massive renovation. Ideally, I need to get a job similar to what I was doing-- whatever keeps me at home and on call is better than a job that requires a commute plus office hours. I'm going to try to find something local; in working for those Korean companies, I inverted my sleep schedule until I had become a vampire-- sleeping from 5AM to noon, working most of the day and into the night, taking breaks for dinner, and barely interacting with my parents. Whatever job I find, it needs to come with normal sleep hours.

One quick update (This Just In!) before I end this post: Mom is apparently upstairs fixing dinner for us. One of her friends is coming over to deliver some Korean food for Mom, so I'm curious as to what Mom is preparing, and whether she means it merely to supplement whatever her friend is bringing, or whether she means it to be eaten exclusively by us guys, while she focuses on the Korean food. The only way to find out which alternative is correct is for me to sign off here, so...

*Fluent doesn't mean perfect: a person can speak with perfect grammar and have an accent; another person might have great listening skills, but have grammatical troubles; fluency is a hard concept to nail down, but as the word's Latin root implies, it's related to one's ability to handle communicative situations in a fluid, flowing manner.

In Mom's case, she has long understood full-speed American English, up to and including many slang and idiomatic expressions. She speaks with an accent and makes some grammatical errors, but she makes herself understood clearly and in a short amount of time. The ability to express oneself succinctly means that one has command of a large active vocabulary; a smaller active vocabulary forces one to resort to circumlocution ("talking around") to express even simple thoughts in a second language.


to the reader in Huntington, Maryland

Dear Reader in Huntington, Maryland:

Thanks for dropping by the blog. I see that you've been using Google to search for the blog, and that you've come by several times using the same search string, ""

Please be aware, however, that you've been repeatedly typing "spotblog" for the domain name. It's actually "blogspot," i.e., "the spot where you find the blogs." A lot of people hate BlogSpot; an easy way to remember the domain name is to abbreviate it mentally as "BS."

I hope this helps. You can also add the blog to a "favorites" list on your browser so that you don't have to type the URL into Google every time.

Say howdy in the comments if you like.


Monday, May 11, 2009


I'm sorry there haven't been any updates before now. Yesterday was Mother's Day, so I decided to slack off. Today, there's little to report, except that I'm increasingly becoming the head chef in the house, as Mom doesn't feel much like cooking. This works fine for me; I enjoy cooking.

Dad called Fairfax Hospital to find out whether Mom can have her radiotherapy mask made on the same day as her appointment with Dr. Tonnesen, the radiologist; the hospital said yes. (The hospital has to create a cast of Mom's face to aid their machines in aiming the radiation more precisely.)

My brother Sean dropped by this morning; he's promising Mom that he'll be bringing Maqz the chihuahua over tomorrow. David's coming over tonight with food for Dad. Because I stepped out for a short while with my buddy Mike, poor Dad almost had to cook dinner for Mom this evening-- an interesting prospect, since Dad claims he can't cook. I had shown him a bunch of Korean food that he could reheat; he was getting ready to do that when I walked back into the house.

Mom continues to exhibit blunted affect: her emotions just don't seem as strong as they used to be. She occasionally rouses herself from staring at the TV to ask questions like, "Are you going out wearing that?" (Yes, that was addressed to me; I've never been a fan of button-down fashion, preferring to dress like a slob whenever possible.) She seems concerned about goings-on inside the house, but doesn't seem proactively motivated to bustle around the house the way she used to. This isn't a critique: Mom's surgery was only a few weeks ago, and we can't expect her ever to heal fully. It does worry me, though, that this might be the new Mom from here on in.

Dad noted, last night, that Mom seems fine when she interacts with us three sons, but her temper is shorter with Dad. She gets annoyed with him very easily, usually about nothing important. It's a strange thing to witness: on the one hand, Mom doesn't seem to feel things as deeply anymore; on the other, her talk often seems more blunt and frank (the frontal lobe is related to inhibitions), and I too perceive that she gets a bit edgy toward Dad in particular. But are these repressed feelings coming out, or simply emotions distorted by a combination of cancer, surgery, and medicine? It's hard to know. For the moment, I lean toward distortion, because Mom has made some wildly inconsistent remarks to us.

I do know that Mom doesn't like to hear talk about doctors. Whenever Dad and I mention her treatment in her presence, she'll turn from the TV and declare, "OK, that's enough." Never forcefully, never with a tone of overt resentment, but in a manner that indicates she's tired of hearing about herself.

Many thanks to Mrs. Burns for dropping off a lovely soup and a bunch of fruit. Thanks, as well, to the good folks who continue to mail Mom get-well cards. The kind gestures are appreciated.

I'll be continuing the Dr. Fine transcription soon. From now on, I'll push that post to the top of the queue every time I make an update.

Oh, yes: Mom's appointment with Dr. Tonnesen is this coming Wednesday the 13th. She's also got to make her radiotherapy mask that day, so we'll be out of the house for a while.

Many thanks to the people who have called in to ask about visiting Mom, and for being considerate re: planning such visits in advance. This method is a lot less stressful for Mom, who still feels hesitant about meeting or calling people.


Sunday, May 10, 2009

special announcement

Happy Mother's Day to all mothers everywhere, present and remembered.