Saturday, September 26, 2009

a quiet, rainy Saturday

Mom spent some of her day at the bar between the kitchen and living room, having at last caught onto Dad's habit of sitting there for meals. The day has been rainy and Mom seems tired, so I didn't bother taking her out for a walk in the park. Dad's been away for several hours on shopping errands. Later in the day, Mom transferred herself to her "throne" on the living room couch; she spent some time just listening quietly to classical music and reading her Korean newspaper. Later on, I switched off the music and turned on the TV; Mom watched the national news on NBC and ate dinner. When the news was over, I switched channels to the Korean station, where Mom's been watching goofy variety shows.

And that's been our day-- quiet, not much happening. I've tried talking with Mom, but she isn't all that verbal these days, and I don't think she's said more than ten words today. Whoa-- Dad just got back with a ton of groceries, so that's my cue to stop here.



Another of Mom's shirts lost a button yesterday while she was picking at it, so we changed her shirt since she seemed unhappy to have that gaping hole in front of her chest. I had sewn a button back onto one of Mom's shirts before; very late last night, as I watched a rerun of "The Matrix Revolutions" on cable, I sewed this button on, too.

As I worked, the monster hiding inside the crevices of my mind wondered what it was all for. She won't need that shirt in a year, the monster whispered. Probably true. This time next year, it's likely that I'll be looking at a sad pile of clothing with no wearer. It hurts to see how many of Mom's material possessions will outlive her.

But ultimately, I rejected the monster's slyly proffered pessimism. Giving ground to the monster would mean giving up on life, because after all, the monstrous logic extends to all of human existence: why bother doing anything when death is the end of the line?

There can be no concession to this kind of thinking, even when death is just around the corner. If I knew that Mom was going to die in a week, and I saw her upset over a missing button, I'd still sew it back on for her. We do these things in the face of death because that's how we're built: we're built to live, not merely to exist. That's why we clean the house even though we know it'll get messy again. It's why we go on vacation even though we know we have to return to work eventually. It's why we love each other, even though we know that love entails repeated pain. We are creatures built to live.

And that's our dharma, the law of our being. If you prefer Christian language, that's how we were created. Or if you prefer a more scientific phrasing, that's how we evolved. The why remains a mystery: why does life fight for itself? Right now, though, I can't worry about the why. A button needs reattaching, chores need to be done, a mother needs to be cared for, and that's reason enough to live.


Friday, September 25, 2009

belated thanks

I neglected to thank Mrs. Whitaker-Frevert for the very nice black-and-white shawl she gave Mom (pictured here).

Thank you.



Chris and Nancy Blackman came by today. Nancy is Mrs. Kopf's daughter. We're thankful for their kind visit.

More visits are coming up, and appointments, too. Here's a peek at our social calendar from now until the end of October:

Sunday, September 27, 3PM: Mom's former coworker, Mrs. Thuy Pham, will be dropping by. She learned of Mom's condition when Dad sent her a letter about it.

Sunday, September 27: Renée Molina, daughter of Dale Molina, will be visiting us for two nights before heading back up to New York City. We look forward to seeing her.

Monday, September 28: Mom has an appointment with Dr. Tonnesen, her radiation oncologist.

Tuesday, September 29: Pastor Jeri will be over at 3PM.

Wednesday, September 30: Dad will attend a 7PM caregiver seminar being held at Fairfax Hospital.

Wednesday, October 7, 10:30AM: Mom goes to Dr. Meister's office at the medical center near Fairfax Hospital for more blood work.

Thursday, October 8, 10:30AM: Mom gets her second Avastin infusion. Dad will attend another caregiver seminar at Fairfax Hospital that evening, at 7PM. (October 8 is also the birthday of Renée's brother Sam.)

Monday, October 12, 3PM: Mom will be visiting her neurologist, Dr. Benson, for an examination.

Wednesday, October 14, evening: Renée's brother Sam Molina will be coming over to stay a night with us.

Thursday, October 15: my brother Sean turns THIRTY. Will he have time to sit down for a bit, relax his Atkins regimen, and enjoy some politically incorrect food for an evening?

Wednesday, October 21, 1:45PM: Mom has blood work and an appointment with Dr. Meister, her medical oncologist.

Thursday, October 22, 11:15AM: Mom goes to the same office and gets her third Avastin infusion.

Thursday, October 29: A big day. Mom goes to NCI, gets blood work done at 12:40PM, then has an MRI at 2:10PM.

Friday, October 30, noon: An even bigger day, as we all go to NCI and meet Dr. Fine, who will deliver the news about whether the Avastin is working, and if not, what our options are.

My aunt will also be visiting sometime in early October; I'm working with my cousin to finalize travel dates.


the state she's in

I mentioned in the previous post that Mom seems to be stronger than she was a few days ago. On the down side, she's also been somewhat less verbal and has been exhibiting some of her old perseverative behavior. But in the evening, after she was home from her Avastin infusion session and her walk in the park, Mom seemed a bit more talkative and coherent. While I seriously doubt that her renewed vigor and alertness were the result of the Avastin, the improvement was a happy occurrence all the same.

The nurse, Gail, told us during the Avastin session that Mom might need to drink more. This was astounding to me, seeing as Mom has a huge plastic mug filled-- and refilled-- with water next to her all day long. Gail mentioned this because she'd been having difficulty finding a vein in Mom's left arm for the IV. "When you press them down, they should bounce right back," she said. That apparently wasn't happening for Gail, and it's true that Mom has been continuing to lose weight.

The most important thing, though, is whether the Avastin is doing anything to the tumors. We won't know until Mom gets her next MRI in six weeks, so keep those fingers crossed.


Thursday, September 24, 2009

from 12:30 to 5:50PM

Mom's Avastin infusion took about 90 minutes to do, as advertised, but the day went way longer: we had to drive to the medical center, check in, have Mom weighed (109 pounds today... she's still losing weight), have her vitals done, get an IV line put in (the nurse had to try twice), get a saline drip started, and then get the Avastin. After we finished, we had to check out, and then we drove in rush-hour traffic to Fort Hunt Park, where we led Mom in a circuit around one of the parking lots.

Mom was a good sport throughout the whole ordeal; our nurse, a lady named Gail, was very friendly and reassuring. She told us about how few people actually manifest side effects with Avastin, despite the long list of possible problems. I'm still apprehensive, though: we've been reassured before about what should happen with Mom, but things have rarely turned out the way the statistics predicted.

Today's walk in the park went as well as it did yesterday, when we took Mom to the park after her visitors went home. She was vigorous, moving along at a healthy clip, very much in contrast with her stooped and shuffling behavior two park walks ago. Remember when I'd written about Mom covering only 60 yards? That was a depressing day. Yesterday and today, Mom walked at least 130 yards-- possibly more. I jokingly asked her if she wanted to walk another lap around the parking lot. She smiled, in on the joke, and shook her head. She's getting stronger (maybe the protein shakes are helping), but she's not that strong yet.

We've been given a calendar that covers Mom's Avastin sessions for September and October. September is done now; Mom's got four dates to look forward to in October. Two are for blood work, and two are for Avastin infusions. After the third Avastin session, we'll be back at NCI for another MRI, and then we'll meet with Dr. Fine to discuss Mom's progress. I hope Avastin helps her in some way.


off we go

We're leaving in a few minutes to take Mom over to the doc for her Avastin infusion.


Wednesday, September 23, 2009

Mom with her friends

Here's a picture of Mom with Mrs. Whitaker-Frevert (L) and Mrs. Rapaport (R).

Mom hasn't been very verbal for most of the past seven days. Tomorrow, though, is her big day: she gets her first infusion of Avastin, which we're all hoping will prove effective in at least slowing or even somewhat reversing the growth of the tumors in poor Mom's head. It's not a cure, but it can buy us some time if it works.


thanks all around

Our thanks to Pastor Kim for stopping by yesterday. I heard that he had to cut his visit short; I didn't get to see him, primarily because I was downstairs looking at a gigantic, glorious image of Saturn, but it's my understanding that he spent time talking with both Mom and Dad upstairs.

Today, we were honored with visits from Mrs. Whitaker-Frevert and Mrs. Rapaport-- two of Mom's friends as well as prominent members of the Washington Korean Women's Society. They talked with Mom, Dad, and me for a while and took in the renovations. Mrs. Rapaport and I talked a bit about the meaning of caregiving-- not a cold philosophical discussion, but rather an exchange at the level of the heart.

The ladies' visit ended with a round of photo-taking; I'll have a pic or two up later. They also brought over a ton of food (Koreans never arrive empty-handed-- a custom that I still haven't internalized, even after all these years), for which we are all very appreciative. Mom is-- we all are-- fortunate to be surrounded by such care.


some more images

Here's a shot, from my brother David's iPhone, of the lunchtime rehearsal we saw at the National Cancer Institute on September 16. Mr. Ulysses James is conducting; Mom's neurosurgeon, Dr. Leiphart, is at the far left, suited up and playing the violin.

And here are two shots of Mom, taken with Dad's very nice Sony digicam. One shot shows Mom in her wheelchair, enjoying the sights and sounds of the recent KORUS festival in Annadale, Virginia. The other shot shows Mom seated at our kitchen bar, wearing what I believe are David's sunglasses.


Tuesday, September 22, 2009


Mom's only just now getting her shower; she was supposed to receive a visit from Pastor Kim at 3PM, but we've had to reschedule that to 4. I suppose I'll be prepping either a small lunch or some kind of "linner" or "dunch" for Mom once she's washed and dressed.


Monday, September 21, 2009

belated thanks

Belated thanks to Pastor Jeri for bringing over pies from church a few nights ago. They say Presbyterians love to eat; as a Presbyterian, I'd have to say that the rumors are true. Modern American Christianity retains more than a few elements of the Middle Eastern ethos from which it sprang, and one such element is the notion of breaking bread together. You might argue that all cultures and traditions share this meme, and you'd be right, but in order to appreciate how seriously Presbyterians take this particular notion, you need to hang around one of our churches.

Thanks, Jeri.

UPDATE: Bill Keezer emails: "Presbyterians have nothing on Lutherans when it comes to eating." Sounds like a challenge to me.

I'm bizarrely reminded of my trip to Haein-sa, a Zen temple not far from Taegu, back in 2000. There, at the spartan temple refectory, one wall had a newspaper clipping attached to it. The clipping showed a picture of Haein-sa's abbot. I couldn't see what the article next to the abbot's picture said, but the article's title said, in big, bold Korean: "We did not come into this world to eat." And I thought the Judeo-Christian tradition had cornered the guilt-trip market!


bar exam

One of the ways in which Dad monitors Mom's status is through her behavior. His specific metric: whether or not Mom chooses to sit at our renovated kitchen's new bar. Dad loves sitting and eating there, and I don't mind playing the role of line cook for him, but Mom has normally chosen to take her meals at her "throne" in the living room: the corner of the long couch that affords her a good view of the TV.

For the last few meals, however, Mom has chosen to sit at the bar and eat with us. Dad finds this encouraging: I suppose he feels that it reflects her determination to be engaged in family life. If that's true, then I'm encouraged, too. Mom got up around 11AM today, and was out of bed around 12:15PM. She's at the bar now, happily munching away on homemade soup, homemade oi-kimchi, and homemade cole slaw. If Mom's happy, then Dad's happy, and if she's sitting at the bar, he's even happier.


Sunday, September 20, 2009

"yes" and "no"

I'm becoming familiar with the cycle now. Whenever Mom's brain experiences swelling, the resultant edema exerts pressure, and Mom suffers cognitive impairment. We're witnessing the return of her perseverative behavior these days, perhaps as a result of Mom's third mass; she often has trouble responding even to simple yes/no questions, staring at me instead of answering. But this morning and this evening, Mom has seemed a bit more responsive. She said "yes" to shopping with Dad and David; she said "yes" to a nice, big bowl of budae-jjigae. During the afternoon, Mom was a bit spacey, but that was only for a few hours.

I find myself hoping for Thursday to come more quickly, because Mom gets her first infusion of Avastin that day. I know the measure is palliative-- Avastin is not a cure-- but I can't help thinking that anything that prolongs Mom's ability to experience and enjoy the world is a good thing.

Mom's tired and seems to want to go to sleep early. She sleeps a lot these days. Today, even though she woke up in the late morning, she was functional only from about 3PM to 9:30PM. I wonder where this pattern is taking us.


shopping and cooking

Mom's out with Dad and my brother David, visiting a Pottery Barn in Tyson's Corner to look at some possible window coverings. Mom took a while to get out of bed; she wasn't in the dining room until a little after 3Pm. I fed her a late lunch, and David came by around 4:30PM. He, Dad, and Mom all departed soon after-- close to 5PM. They might hit dinner while at the mall, but in the meantime, I'm home fixing up some food and laundering a large blanket plus some throw rugs-- things that can't go in the washer, per the repairman's instructions. The food: cole slaw, fruit salad, budae-jjigae, cheesecake (ready-made, minus a few ingredients; I don't have the skills to make a proper cheesecake on my own), and oi-kimchi. Eclectic enough for you?



It's my understanding that we might take Mom shopping for drapes and blinds for the new dining room today. She had expressed some interest, yesterday, in going out to select something nice for the room, which currently has nothing to cover its windows. It's about time: as I mentioned a while ago, the dining room is great, but the huge windows turn it into a greenhouse when the sun shines brightly-- as it's been doing for most of the summer. So I'm all for this excursion, if the end result is window coverage.