Saturday, September 26, 2009

sewing

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.


_

visitors

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

visit

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?


_

shopping?

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.


_

Saturday, September 19, 2009

brief, but OK

We spent a short amount of time at the very crowded KORUS festival in Annandale's Koreatown, wheeling Mom around, buying her cotton candy, and drinking in the sights and sounds. There were plenty of food stands (many were way overpriced), some tee shirt booths, and other booths devoted to things like banking and phone services. We met two people that Mom knew, and spoke briefly with them. There was some confusion about meeting some other people-- either they were supposed to meet us, or we were supposed to walk over to where they were. Either way, we didn't meet up, and after waiting a while, Dad and I decided we should go. I don't think we were there for more than an hour, but Mom seemed to enjoy the excitement, even though it wore her out.


_

some pics before we leave

A friendly alien appears while I'm making spaghetti:




Mom and a bear given to her by a childhood friend:





Right... we're off to the KORUS festival, and might even take Mom on a stroll elsewhere. She'll be in her wheelchair today. Ah, yes, before I forget: we've started her on a muscle buildup regimen. Today, she downed a protein shake made with soy milk. Not the nicest brew, but she was a good sport about it, and she'll do it again tonight. Here's hoping that the drinks, along with some leg-strengthening exercises, work at least somewhat.



_

gorgeous day

It's a fabulous day outside. Too bad Mom's still sleeping as I write this; now I know how she felt whenever I, as a younger man, would sleep in. "Sleeping your life away!" she'd snarl.

Of course, I don't view Mom's somnolence in quite the same light. I rue the fact that she's missing some fantastic weather, but I don't view her as wasting time or life. She's doing exactly what she needs to do to get through the day. If she wants to sleep, then let her sleep, I say. Your head is the vessel for most of your burdens; it's where you hold up the world. Add three tumors to what's already in your head, and you're shouldering more of a burden than Atlas ever did.

So maybe we should look at the situation in a more positive way: today, the earth shows its beneficence, and Mom can sleep peacefully under the aegis of a smiling sky.


UPDATE, 1:35PM: No sooner do I write all this when Mom wakes up. We'll be heading out to the KORUS festival once Mom is prepped and ready.


_

Friday, September 18, 2009

visits, a stroll, and tomorrow

Mom had two visitors today: the Quiggs, who passed by to drop off a care package (thank you), and Mrs. Strausbaugh, who very kindly stopped in for a bit and left a full dinner with us. Dad mentioned some time ago that Mrs. Strausbaugh had enjoyed a reputation as an excellent cook when we lived in our old neighborhood way back in the 1970s; from the meal we ate the last time she made dinner for us, we know that Madame hasn't lost her touch in the slightest.

After Mrs. Strausbaugh left, Dad departed on a Korean store run and I took Mom over to Fort Hunt Park for her first real walk in several days. Mom has been getting steadily weaker, and today she barely managed 60 yards. She bravely tried to chug along as fast as she could despite my urgings to slow down, but as she herself noticed, she ran out of steam after only a few steps, wilting like a time-lapse flower, and obliging me to support her with a hug as we shuffled forward across the asphalt. Mom chuckled at her own feebleness, but she didn't fall-- I didn't let her. I held her up, and turned her toward the car before her legs had a chance to give out.

We now know that this weakness is one of the side effects of Mom's Decadron, a corticosteroid that, according to the nurse practitioner at NCI, breaks down muscle tissue. Muscle atrophy, then, is what we can expect as use of the steroid continues. And here's a funny thing: Dr. Meister had tried to correct me when I associated Decadron with Mom's weight loss, claiming that Decadron causes weakness, but to me, the causal chain is pretty obvious: muscle atrophy means decreased muscle mass, which in turn means weight loss. This reference associates Decadron with both weight gain and weight loss, because a drug's side effects will depend on its interaction with each person. (The nurse practitioner at NCI had also noted that many people on Decadron get "thicker around the middle," i.e., they get fatter, gaining weight even as they lose muscle. Mom appears to be an exception, as she isn't gaining fat.) The above-linked online reference also notes loss of muscle mass as a side effect of Decadron. Come on-- get with it, Doc!

Watching Mom's downward progress is always painful, and today was no exception. She was obviously trying hard to maintain as quick a pace as she could, but she was also obviously weaker than she was last week. I have no idea whether Avastin will weaken her further, but if the present trend continues, it won't be long before Mom will be needing a wheelchair full-time, even inside the house. Of course, we've known this from the beginning, but foreknowledge and fruition are two very different animals.

Tomorrow, Dad wants us to go to the local Koreatown for the KORUS (Korea-US) festival. A recent check of Weather.com shows that tomorrow will be in the mid-70s and sunny, a perfect day for just such strolling. We'll roll Mom around in her wheelchair and see what there is to be seen. That's what care means these days: affording Mom as many pleasant sense experiences as possible, allowing her to drink in the world.


_

Mom's first Avastin infusion

Kudos to Dad for his doggedness in tracking down the exact date and time for Mom's first Avastin infusion: this coming Thursday at 1:30PM. From now on, infusions will be at two-week increments, and always on Thursday.

Mom is supposed to meet back with Dr. Fine in six weeks, but Dad and I are unclear on whether "six weeks" means "three infusions" or "four infusions." If Mom's first infusion is counted as Week 0, i.e., the day we start the six-week timer ticking, then Week 2 will be the second infusion, Week 4 will be the third infusion, and Week 6 will be the fourth infusion. If, on the other hand, "six weeks" simply means "six weeks," then Mom will have had either three or four infusions by the time we meet with Dr. Fine again. We've left a message with Dr. Fine's office asking for clarification.


_

feels good to sleep in

Woke up late today. Felt good to do that. Waking up shortly after dawn is no picnic when you're not a morning person, and I've had to do that three times in recent days. I used to wake up at 6 or 6:30 every weekday morning in Korea, back when I was teaching at my mother's university: classes started at 7:40AM, so I had little choice. Like the other teachers, I also had to supply the pep and verve that would get those early morning classes in gear: the students tended not to be morning people, either.

One of Mom's friends is coming over today sometime between 2PM and 3PM, I think. Gotta prep lunch for the family and get myself ready. That latter step isn't hard: I'm a guy, so I don't concern myself with makeup, and I've shaved my head, so there are no styling issues.

The day awaits. En avant!


_

Thursday, September 17, 2009

muchas Jerry Garcias

Many thanks to Pastor Jeri for her visits both yesterday and today; thanks, as well, to the entire Wednesday Night Live group at church for gathering up some scrumptious food and sending it our way through Jeri. I ate some of the salmon today; it was perfectly cooked, and was a great center for the salmon-and-dill sandwich I made using some of the rolls we received as part of the church's care package.

Pastor Kim came by a couple days ago, and I never thanked him for his visit. Also, a big thank-you to Mr. Jeong sajang-nim for dropping by the same day as Pastor Kim and repairing the kitchen drawers and doors that needed fixing. Mr. Jeong saw the wheelchair ramp outside and made a face-- not because of the workmanship, which he seemed to admire, but because, as he put it to me in Korean, "If you needed something like this done, you should've called me! I've got time to do this sort of thing!"

"Would you have done it for free?" I asked.

"Of course!" he replied. And then he said in a chastising tone, "If you ever have a problem in the future, call me." I'm pretty sure he meant a Mom-related problem, but I was sorely tempted to ask him to refurbish our attic. Heh.

As always, people keep proving that kindness abounds.


_

lost in translation

It somehow didn't come across, yesterday, that today's visit with Dr. Meister was merely to do more blood work and to get the ball rolling for insurance approval of Mom's use of Avastin. I had been under the impression that we would be starting treatment today, but according to Dr. Meister, we won't be starting until early next week. So stay tuned.


_

the bad news and the good news

Here are two frames from the MRI scans done for Mom on September 11. They were hard for a non-expert like me to find, but after much digging through nearly 3000 images, I'm pretty sure I've found the correct two frames that show what the doctors were talking about at the consultation. If not, perhaps someone reading my blog at NCI can leave a comment or send an email to correct me. The last thing I want to do is pass along misinformation.



The top frame shows the bad news: Mom has a new mass-- her third major one. The first mass was largely debulked; the second mass grew during the period when Mom was on her daptomycin regimen to guard against potential infection. The third mass may or may not have formed during radiotherapy. Given how aggressively these tumors have appeared-- all within startlingly short time frames-- it's possible that this third mass began forming right after Mom's radiotherapy stopped. I don't know, and I didn't ask. It was mentioned that the radiologist missed this mass, but Dr. Fine spotted it upon review.

The bottom frame shows the more or less good news: Mom's second mass was, in fact, affected by the in-tandem therapy: the darker center indicates necrosis. It's too bad she didn't get the full dosage of Temodar (you'll recall that she restarted radiotherapy before going back on the Temodar), but at least we see that the therapy did something. I should also note that the doctor never said the second tumor had been completely killed off. It still represents a danger. Even a single living cancer cell is a danger.

The plan, now, is to move forward with Avastin. As I wrote before, dosages are administered intravenously. Mom's first session will be an infusion over a 90-minute period. On the second visit, two weeks later, Mom will have the infusion done over 60 minutes. On the third visit-- and on every visit thereafter-- Mom's infusion will last only 30 minutes. The space between visits will always be two weeks, from what I understand. Dr. Fine seems pretty confident that Mom "fits the profile" for people responsive to Avastin. Unlike that article I linked to a while back, he puts the non-responsive rate at 30%, not 50%-- a more optimistic reading of the situation.

For myself, I just hope we're not wasting our time. I'm willing to try Avastin because I've heard good things about it, but I also recall Dr. Tonnesen's pessimism: in his opinion, the treatment won't add more than a few weeks to Mom's life. We'll see. Nothing wrong with hoping for a better outcome.


_

Wednesday, September 16, 2009

upshot

Today's visit in a nutshell:

1. It was determined by the nurse practitioner that Mom's current weakness has to do with her Decadron, the steroid that's keeping down brain swelling. Decadron apparently breaks down muscle tissue; it's also associated with weight gain in the form of fat, but in Mom's case, this hasn't happened: far from gaining fat, Mom continues to lose weight. The two rings on her ring finger now hang loosely.

The best solution to the problem appears to be the resumption of some sort of physical therapy along with the addition of protein supplements like Ensure, soy milk, etc. Mom's diet will be changing accordingly.

2. The newest MRI shows good news and bad news. Contrary to Dr. Tonnesen's assessment that Mom's second growth was "growing right through the radiation," it turns out that the second mass is now mostly necrotic, and appears largely black on the scan. So: radiation and Temodar did have an effect. The bad news is that Mom has a new, third growth, this one located close to the original debulking site, i.e., the left frontal lobe. This mass, however, is lower down in the brain-- the MRI image shows it on the same plane as the nose and cheekbone. The cancer is frighteningly aggressive. (Image to appear later.)

3. Dr. Fine thinks Avastin is the best way to go. I voiced my concerns about starting Mom on a procedure like Avastin therapy without even knowing whether her tumor would respond to it; his response wasn't exactly polite-- it was essentially, "If you want to try a different, less reliable method, well, be my guest and good luck." But his point was that, statistically speaking, Avastin offers the greatest chance of significant tumor shrinkage. With a third mass to worry about, one that may very well have done what the second mass didn't (i.e., grow right through the therapeutic bombardment), this seems like the most rational approach.

4. Avastin isn't administered as a pill; it's done intravenously. Mom will have to receive infusions every two weeks, so the current plan is this: let Mom do six weeks' worth of infusions, then bring her in for an MRI. Instead of coming to NCI, however, Mom will visit Dr. Meister, her current medical oncologist. Our first appointment is tomorrow at 9AM. We'll have to leave early to make sure we beat the rush hour traffic.





That's essentially what today's meeting was about. David and Sean were there, too, which gave the rest of us a great deal of moral support. We all took the elevator down to the lobby and discovered, much to our surprise, that Ulysses James was there with his "pick-up" orchestra, setting up for a noon concert. Mr. James has known our family for years; David and Sean both used to play in his orchestra. I had spoken with Mr. James some time ago about Mom's condition, but today was the first time he had seen her since this ordeal began. From his perspective, it must have been quite a shock to see Mom so thin and weak, sitting quietly in a wheelchair with a helmet on her head. I could see the conductor was about to cry; I didn't blame him, but I thought to myself, Please don't cry, sir, or you'll make me cry, too. Mr. James and his wife have both been very kind to our family. Today was no exception: Mr. James took Mom's hand, kissed it, and said huskily, "You are the most wonderful person I know. I love you."

We knew we couldn't stay long, because we needed to get home and schedule the appointment with Dr. Meister. We decided to sit by the orchestra for a few minutes all the same, and while we sat and listened to the musicians rehearse, we received our second surprise: Dr. Leiphart spotted us and walked over. He told us he would be playing with the orchestra today, which made the situation even weirder: it was strange to think of these two gentlemen-- Mr. James and Dr. Leiphart, who are parts of our lives for very different reasons-- actually knowing each other. A small world, indeed.

So tomorrow, we look forward to the beginning of more aggressive therapy. Our thanks, meanwhile, to Mr. James and Dr. Leiphart for stopping by to see Mom. And thanks as well to Kay Wood, who visited today while I was sleeping off my fatigue after getting only three hours of shut-eye last night.


_

back from NCI

I'm dead tired at the moment, having had only three hours' sleep. Will write about our trip to NCI after a nap that might last a while.


_

Dr. Leiphart (far left, violin) and Mr. James (conducting)

Sent via BlackBerry by AT&T


The above pic was snapped in the main lobby of Building 10 of the National Cancer Institute, sometime around 11:30AM. The conductor, Ulysses James, knows both of my little brothers very well (David played the violin; Sean plays the viola and cello). Dr. Leiphart (Mom's neurosurgeon) was there to play with Mr. James's "pick-up" orchestra. An interesting coincidence, to run into two people we know for very different reasons, and to find out that they know each other.


_

Tuesday, September 15, 2009

big day tomorrow

Once again, a big day tomorrow, as we'll be seeing Dr. Fine (or one of his teammates/team members) tomorrow morning at 9AM. The first part of the consultation will be an interpretation of Mom's MRI, which was taken this past Friday. I imagine the second part will be an explanation of where we go-- or don't go-- from here. There are some painful questions to face, such as how aggressively to pursue the cancer if we know that harsh treatment will mean a severe reduction in Mom's quality of life. Will such treatment be worth the pain of watching Mom in misery? Even the use of Avastin, only recently recognized as an official second-line therapy for GBM, is associated with some horrible risks, such as internal hemorrhaging. It was that risk, in particular, that made us decide not to have Mom's bone flap put back in.

Beyond the question of aggressive treatment is the question of which therapy to choose from. I hope that, through my writing, I've given people some idea of the dizzying variety of treatments currently available for GBM patients. Of course, we can't choose all of them, and none of them is a cure-- that was established at the outset. Although it's a hateful phrase to use, GBM is considered a "dead on diagnosis" disease. As I've said, the only possible positive outcome would be for Mom to somehow live long enough to pass away from old age. As far as ridding herself of cancer goes... there's no chance of that.

Part of life is about learning to confront one's limits and the inevitability of circumstances beyond one's control. This evening during dinner, we saw a clip of the late Patrick Swayze's recent interview with Barbara Walters. At one point, the startlingly gaunt Swayze told Walters that he had accepted the constraints of his disease, i.e., he understood that he had no chance of being free of his pancreatic cancer. He did, however, say that he now lived with an "openness to miracles." An admirable sentiment, but one that needs to be examined, since it's subject to interpretation.

Personally, I'm not big on miracles, if by "miracle" we mean something magical, something that defies the normal course of nature. My own idea of the miraculous is best summed up by a quote from the movie "Bruce Almighty," in which God, as portrayed by Morgan Freeman, says:

Parting your soup is not a miracle, Bruce: it's a magic trick. A single mom who's working two jobs, and still finds time to take her son to soccer practice, that's a miracle. A teenager who says "no" to drugs and "yes" to an education, that's a miracle.

I've spent a lot of time on this blog giving responses to an argument that has been going on behind the scenes, one that comes up periodically when we have visitors, some of whom are in denial about Mom's condition, and who retreat to magical notions of religion when the going gets tough. The problem, though, is that magic is inconsistent and unreliable. You can't base an argument for the power of magic on anecdotes and random, isolated cases. The logic never works. Consider a freak accident: if you're the sole survivor of a plane crash that killed 299 other people, is that a miracle? The magically inclined will think it is, conveniently forgetting the 299 people who weren't similarly spared. The crash survivor who claims he was miraculously saved will have a lot of explaining to do to all those other bereaved families. Personally, I'd say he was just lucky.

To be sure, this cuts both ways: magical thinking focuses not only on the "miraculously fortunate," but also on the "miraculously unfortunate," e.g., someone who is struck by a disease while millions of others are spared. From the magical perspective, it might seem that my mother is being punished for her (or for someone's) sins. Bunk, I say: she's just unlucky, a fact reinforced by current science, since doctors still have little notion of what causes GBM. The cancer's not related to one's personal habits, nor is it caused by any obvious genetic defect (which would make its occurrence more predictable). Because every GBM is composed of tissue from the patient's own brain, it's best thought of as one of those instances in which the body rebels against itself. Bringing magic and superstition into such a crisis situation only serves to confuse things.

However, if we think of miracles not in the primitive magical sense, but in the mundane, unexciting sense quoted above, we can look around us and take delight in the many ways, both humble and grandiose, by which people strive against entropy. It would, for example, be easier for the members of my congregation, or for members of Mom's Korean women's society, or for Mom's circle of friends, to hear the news about Mom's cancer and say "What a pity," then just sit there. But that's not what happened. Instead, people have fought that natural inclination to laziness and entropy, mustering the will to perform some truly extraordinary acts of kindness and charity for us.*

Every visit, then, can be seen as a miracle. Every time food arrives for us, that's a miracle. Every card is a miracle. Every hug, every kiss, every moment that someone holds Mom's hand-- those are all miracles. As the God of "Bruce Almighty" warns us, "You keep looking up." People keep seeking solutions from on high, an instinct that reveals our primitive and misguided desire to see and experience magic. But the solutions are actually to be found down here-- not at the gelid mountaintop, which has little bearing on our existence, but in the valley of the ordinary, where we all are at every moment. In his 1970s classic Zen and the Art of Motorcycle Maintenance, Robert Pirsig says, "There's no Zen on mountaintops." He and I are talking about the same human problem. Believing in magic is like pinning your hopes on fog.

If Patrick Swayze was open to the sort of everyday, mundane miracles I'm writing about here, then he and I are in agreement. If he was, on the other hand, holding out hope for some sort divine deliverance, well... he has his answer. Me, I suspect that Swayze was a hard-driving, practical type, not the sort of person to sit around waiting for angelic hierophanies. In the end, I don't doubt that he faced death bravely and calmly, with his family by his side. And that's as it should be.

So we'll meet with the docs tomorrow. I'm realistic: we can be sure that Mom's prognosis won't have magically changed. But we might learn something about life-extension or, at the very least, about advances in palliative treatment. I'll be curious to find out whether the radiotherapy actually did anything for Mom. Whatever happens, tomorrow will be an important day, and whether we come out reassured or even grimmer than before, we'll at least know more.





*Dr. M. Scott Peck, in his The Road Less Traveled, cites laziness as the basic human problem. Entropy is expressed as laziness in human beings. Spiritual growth-- the fight against entropy-- is a matter of effort and work. It involves striving, getting off one's ass and doing something instead of taking the easy path and doing nothing. For Peck, love is not a mere feeling. Feelings come and go in a mercurial, irregularly tidal manner; true love is action. Love is what's visible when an angry spouse cooks dinner despite his or her anger, or when a parent upset with a child's behavior nevertheless stays by that child and encourages him to study harder or behave better. Love is what we see when people too tired to move or think still somehow dredge up the energy to care for each other. Paul talked in I Corinthians 13 about how love is patient and kind, and that's all true. But love is also the gritty (the nitty-gritty) mortar that keeps the larger edifice standing.


UPDATE, 9/16/09, 2:49AM: THIS PAGE links to a wealth of information about therapies at NCI and elsewhere.


_

studying up

Tomorrow morning, we get up at 5AM again, as we did last Friday, to head over to NCI for Mom's 9AM appointment with Dr. Fine and/or his team. Today, I'll be reading up on the second-line techniques I've learned about, and if Dr. Fine doesn't mention them himself, I'll bring them up during the consultation. The ideal treatment(s) will be painless and minimally invasive, if they involve surgery at all. I'm mentally prepared to hear that, given the cancer's progress, surgery will not be an option. However, if something like that fiber-optic laser surgery is possible, I'll welcome its inclusion in our list of viable options.


UPDATE, 2:49PM: This is not welcome news.


_

Monday, September 14, 2009

another through the door

I just learned, sadly, of the death of actor and dancer Patrick Swayze, who has lost his battle against pancreatic cancer-- yet another intractable form of the disease. My sympathies go out to his wife and family.


_

aftermath

Today, we celebrated my brother David's birthday. David's a hard one to buy gifts for; if you ask him what he wants for his birthday or for Christmas, he'll usually say "Don't buy me anything" or something along those lines. We do know, however, that David's an avid mountain biker and that he loves electronic gadgets, so we got him gift cards for REI and Best Buy.

My own gift to David was tonight's dinner; I made my usual "crazy bolognese" spaghetti along with garlic bread and a simple salad (baby spinach, sweet onions, almond slivers, alfalfa sprouts, mandarin oranges, and raspberry vinaigrette). Dad, however, deserves the biggest applause for stepping out of his comfort zone-- he says he can't cook-- and making his first-ever vanilla layer cake with chocolate icing, served with several varieties of Ben & Jerry's ice cream.

David also enjoyed the Purple and Brown video to which I linked in the previous post; in a few minutes, I'll probably show it to Dad.

Hard to believe my little brother's thirty-three. Not so little, I guess.


_

my brother David turns 33

A big HAPPY BIRTHDAY! to my brother David, who turns 33 today.

David works two jobs, often going nonstop seven days a week. In his spare time-- when he has any-- he either comes to visit us, or he goes mountain biking. David's the go-to guy for most tech-related questions in the house. He combines a love of nauseatingly saccharine cuteness with a love of the gross and vile, often emailing me hilarious pictures of demented abominations (far more bizarre than this).

David's also been a steady, level-headed help with Mom, and he's often the one who, when Dad and I fail to elicit reactions, can make Mom say and do goofily humorous things. The world's a brighter place thanks to David.

And now, a haiku:

turning thirty-three
David pauses, ponders life
then goes back to sleep


Finally, a video I'm sure David will appreciate:

Purple and Brown: Bubble Gum


_

Sunday, September 13, 2009

a day in progress

Today, Mom got up around 11AM or so, and left with Dad for Fairfax Hospital some time after noon to get more blood work done-- this time for her primary care physician, Dr. Royfe, who wants to monitor her blood sugar levels. We wanted to use the results from Friday's trip for Dr. Royfe, but NCI said we would have had to put the order in well beforehand, thus necessitating today's trip to the hospital.

While Dad and Mom were gone, I mowed the front lawn, and have spent a large part of the day hand-washing a pile of blankets and pillows, mostly from my room-- laundry that hasn't been done in months. The word we got from the washing machine repairman was that we shouldn't put blankets and pillows into our washer, however "heavy duty" it might be. Taking these things to the laundromat gets expensive, though, and since I don't mind acting as a human agitator, I filled up some giant plastic tubs and churned away like an enormous, bald Cinderella.

David came over; he, Dad, and Mom took a stroll around the back yard and talked with our next-door neighbor, who hasn't seen Mom since all this started.

We're about to sit down to some chili dogs and Korean food. More later.

_

quick Saturday report

It's no longer Saturday, but I thought I'd provide a quick Saturday update.

Mom woke up very late. According to Dad, she wasn't out of bed until around 3PM. This is because she had insisted on staying awake all day on Friday-- a day that started at 5AM for all of us. I took a two-hour afternoon nap that day; Mom somehow managed to remain awake until her normal bedtime of 11PM. I still don't know how she did it.

Dad and I now suspect that Mom's disconcerting weakness on Friday night was the result of her lack of sleep. She simply had no strength left: she was exhausted. It's little surprise, then, that she remained in bed until 3PM on Saturday.

Dad went out shopping, and I mowed the weeds in our back yard. The weather was fantastically cool, which made mowing a pleasure. I didn't appreciate the presence of the neighbor's dogs, though; the two ladies who live in the house behind us-- their yard abuts ours-- own two huge, noisy, and decidedly unfriendly dogs. One of the animals routinely tries to climb the fence to get at me, barking insanely whenever she sees me. I'm tempted to feed both dogs Ritalin, but am not eager to have a talk con la policía: I'd have to steal the Ritalin first, you see, having none of my own.

Tonight, because Mom had gotten up and eaten lunch so late, I fed her a small, late dinner (I'd given Dad instructions on what to feed Mom for lunch while I did the mowing), then entreated her to try Sean's "stand up five times" exercise. She performed all five knee bends, cheating slightly by using her hands to tug on mine. But unlike the previous night, she actually had some strength in her legs. That was a good sign. We'll see how Sunday goes. Me, I've got the front yard to mow.


_

9/11 and facing crisis

You can't know who a person really is until you pluck him out of his quotidian circumstances and force him to face alien situations. This is why people have long believed that crises are tests of character and mettle. True: we each face a new state of affairs at every moment, but thanks to a combination of genetic nature and cultural nurture, we're programmed from childhood to know how to handle the demands of whatever counts as normal for us, no matter our cultural and genetic makeup.

But how do we perform when the normal is ripped away? Being a New Yorker down the street from the Twin Towers on September 11, 2001 must have been such a test. Being a passenger on United Flight 93, or being in or near the Pentagon on that same day, must have been similarly jarring. How do people react in such situations? Do they say, "It's not my affair" and walk nonchalantly away? Do they watch with horror and pity, yet do nothing? Or do they get involved as constructively as possible?

Crises plunge us into an alien environment, a new and unfamiliar world in which, at least for a short while, we find it hard to get our bearings. Our bodies all react instinctively in such situations, but each person's bodily reaction is unique. Some people find themselves filled with fear; others seem able to take violent change in stride. But along with the physical, there's the mental-- the exercise of will. A person initially filled with fear can, if he so desires, master that fear and function, but some people, when faced with crisis, forget they possess a will and simply give in to their emotions. For such people, rationality goes out the window.

I've seen the best and the worst in the human heart as we've dealt with our own family crisis. Some in our circle of care have reacted with denial, unable to face reality, yet ready to blame others should Mom's health undergo a downturn. Others, also in denial, have offered therapies and remedies based on pseudoscience and superstition. I don't doubt that any of these people is well-intended, but such reactions really do nothing to help the situation; in fact, far from helping to impose order on chaos, they make a hard job harder.

Other people, however, have truly shone in the face of crisis. The outpouring of help and concern for our family has been amazing to experience, not to mention humbling. The number of people who have visited Mom and held her hand is a reassurance that there's plenty of good in the world, an insight I saw firsthand during my meager 600-mile walk last year. Cards, food, a new wheelchair ramp that has already seen use many times over-- examples of care are legion, and we're all very thankful to know that Mom is surrounded by such love and friendship. We're lucky to belong to so many communities that, collectively, show such sterling character in the face of crisis.

New Yorkers, the folks at the Pentagon, and the local residents and professionals at the United 93 crash site all demonstrated similar fortitude when confronted with heart-wrenching adversity. Over the years, 9/11 has become a time of remembrance, a day to honor the dead and to reaffirm our resolve in the face of terror. But it should also be a day when we remind ourselves that, at our best, we can shine in times of crisis. And that particular reminder should echo in our heads every single day, not just on 9/11, and not just when dealing with major disasters.

When your world is torn asunder, keep your balance, and don't lose your head. To those who are already acquainted with this wisdom: thank you.


_

Saturday, September 12, 2009

inside Mom's skull

[WARNING: The following images aren't for the easily upset. Skip this post if you don't think you can bear to see MRI snapshots of my mother's brain.]


Here is a set of MRI shots taken at various dates. An explanation follows each pair of photos. Just so you know, the scans have "compass points" surrounding the skull (especially the right-hand images) that allow you to orient yourself. For example, the letter "A" stands for the anterior aspect, i.e., the front of the skull. "P," then, refers to the posterior aspect, i.e., the back of the skull. As you probably guessed, "R" and "L" refer to "right" and "left." You'll notice that "L" appears on the right side of the image, and "R" is on the left. This is because you have to imagine that the camera is under Mom's chin, looking upward toward the top of her head. At a guess, I'd say the "S" that you see in the left-hand images refers to the superior aspect, i.e., the upper or top portion; the "I" at the bottom of the left-hand images, then, refers to the inferior aspect, i.e., the lower or bottom portion.




The first image is from April 19, 2009, and was taken at Fairfax Hospital. Mom had two scans done on April 16, the day she presented with symptoms, but the images from Mount Vernon Hospital are fuzzier and don't provide you with anything you don't see in the image below.

Image 1:



EXPLANATION OF IMAGE 1:

Both the left-hand and right-hand images, above, show a golf ball-shaped (not golf ball-sized) mass inside Mom's brain.

Keep in mind that MRIs, like CT scans, create images in slices, so that a doctor can move through the patient's brain slice by slice to see what's going on inside the patient's skull. The CDs containing the MRI images all hold several hundred pictures; what you see above is merely two images among many. In other words, with only these two images to look at, you're unable to appreciate the dimensions of the tumor, and you're also unable to see that the tumor formed fairly close to the surface of the brain (this is obvious when you look at other slice-images). The right-hand image, in particular, looks as if the tumor is buried deep inside the brain. It was, in fact, close enough to the surface to be easily debulked. The left-hand image, by the way, is a slice from the left hemisphere, which is where the main mass of the GBM was on April 19. Like other GBMs, this tumor sent out tentacles, and was already crossing over to the other side of the brain when Mom was admitted to Fairfax the evening of April 16.

The right-hand image very clearly shows you the extent of the edema I had written about early on. An edema is a swelling, often in response to some sort of ongoing pressure or sudden impact. The tumor had become a significant mass by April 16, so it was pushing against Mom's brain in all directions, causing the edema, which in turn caused Mom's cognitive and speech issues. I chose this particular image-slice because of the clarity with which the edema was revealed in it.




The second image is from April 22, the day after Mom's first operation at Fairfax Hospital. This operation was all about debulking the tumor, a standard procedure, and one that was performed on Ted Kennedy as well. You'll recall that debulking, especially in the case of glioblastoma multiforme (GBM), is not about eliminating the entire tumor. By the time most people discover they have this tumor, they have already formed one mass or several masses. If a given mass is located too deep inside the brain, surgery won't be able to remove it, making debulking impossible. The primary purpose of debulking is, then, a delaying action-- the better part of the tumor's mass is removed in the hopes of slowing its progress. Of course, as several doctors have noted, even a single tumor cell is enough to restart the whole horrible process: one cell becomes two, two become four, four become eight, etc. Within a few dozen iterations, you're back to having a sizable tumor again. As you'll see in subsequent images, this is essentially what has happened to Mom.

Image 2:



EXPLANATION OF IMAGE 2:

This image scared me when I saw it. I couldn't help thinking, Christ, all that empty space! While it was tempting to think that the neurosurgeon had heedlessly hacked away a large chunk of Mom's brain, you can see on closer inspection that Dr. Leiphart and his team had actually employed a great deal of finesse, showing enormous respect for the brain's internal contours. Dr. Fine at NCI saw this very image, and complimented Dr. Leiphart's technique. The point of the surgery had been to remove as much of the tumor as possible while also allowing Mom to retain as much cognitive, motor, and autonomic function as she could. What would be the point of performing the debulking if the patient was left a vegetable?

The technical term for "cutting out" is resection. Much of Mom's frontal lobe-- not merely on the left, but also on the right-- was resected. As you can see, much of the edema remained, but because barely 24 hours had passed since the surgery, it isn't surprising to see the edema on this MRI. Very disturbing to me, however, was the evidence of the tumor's pressure on the brain's central fissure.




The third image is from June 3, 2009, Fairfax Hospital. This was a few days before Mom's final two surgeries on June 9 and June 10. She'd had another surgery on May 25. Mom was battling a MRSA infection (methicillin-resistant Staphylococcus aureus, one nasty bastard of a bacterium, and all too common in modern hospitals) that had penetrated her scalp, her skull, and her brain.

Image 3:



EXPLANATION OF IMAGE 3:

At this point, Mom's infection had gotten so bad that the scans were vague as to how much of the cloudy tissue was cancer and how much was infection. Was the tumor regrowing rapidly? Was the MRSA spreading like wildfire? The operations on June 9 and 10 revealed that, for the most part, we were looking at MRSA's evil work.

Above, you see the confused mess, along with what appear to be dots or pits or bubbles. The edema was back in force at that point, which is why Mom's cognitive abilities had once again regressed. All was not well, but the docs did their best and definitively cleared out the infection. The June 10 operation, Mom's fourth (and, up to now, final) surgery, was done by Dr. Mirali, the plastic surgeon. A portion of the skin from the back of Mom's left thigh was harvested and placed on her scalp; the rest of the scalp was rotated forward to allow Mom's initial incision point a bit of slack-- it had previously been under a lot of pressure.

By the end of the fourth surgery, Mom was without her bone flap, which is where we find ourselves now. Mom wears a helmet every time she stands up for any reason: because she's missing a piece of bone almost as large as the palm of my hand, it isn't safe for her to walk without protection.




The final image is from July 20, 2009-- the image that caused Dr. Tonnesen to conjecture that Mom has only months to live.

Image 4:



EXPLANATION OF IMAGE 4:

As you see above, the MRI showed a new mass (circled in red in both images), almost the same size as the original mass from the first pair of pictures. In this case, however, the mass is located deeper inside the brain; surgery isn't a good option. Because the tumor has taken over the corpus callosum in crossing over from the left to the right hemisphere, it's here to stay. As Dr. Leiphart told us, no sane surgeon is going to touch the corpus callosum-- the main connector of the brain's two halves. (Above, the left-hand image is a slice from Mom's right hemisphere, unlike the left-hand picture in Image 1, which is from the left hemisphere.)

Our frustration, though, is that we had heard from Dr. Tonnesen, Mom's radiation oncologist, that the tumor had been growing "right through the radiation." However, this MRI was taken at a point when Mom had undergone only about three weeks of radiotherapy. We had been told, earlier, that it normally takes around three weeks to notice positive effects from therapy. Was it therefore possible for any doctor to conclude that the radiation wasn't working? The more I thought about this, the more it seemed that something didn't add up. It was conceivable that the massive regrowth we were seeing was the lingering robustness of a tumor that had enjoyed a reprieve of about eight weeks, during which time Mom was on a daptomycin regime to rid her of any lingering MRSA infection. Fight the tumor or fight the infection-- that was the choice back then. And it was no contest: the infection was the more immediate threat. Unfortunately, this meant the tumor had two months to grow on its own, unopposed by therapy and in defiance of the doctors' guesses.

And that, too was upsetting: we had been told by several doctors that the tumor was unlikely to grow significantly for around six months. This turned out to be tragically untrue-- yet another case of docs making pronouncements based on statistics instead of looking at the actual patient sitting in front of them.

Anyway, the MRI that Mom took yesterday morning will give us a somewhat better idea of whether the radiation and chemotherapy actually did anything, or if it's true that, as Dr. Tonnesen said, the tumor had shown "exuberant" growth despite the therapy.

All of the above images were hard for me to look at when I first saw them, and the fourth set of images, in particular, came as a nasty shock, especially since Mom had seemed to be doing better, clinically speaking (walking, talking, interacting, thinking a bit more clearly, etc.). "Months," the doc said. Months. The syllable still echoes in my head.

Here's hoping the good folks at NCI can give us more than a few months. The moral question for me, and possibly for my dad and my brothers, is how to nurture and act upon the desire to see Mom's life extended while not succumbing to a certain species of greed-- greed that will lead to disappointment, anger, and depression if it turns out that significant life extension isn't possible. Somehow, we have to hope for the best while also preparing ourselves to accept the likelihood that the best outcome won't be ours. It's a morbid balancing act. During the first few weeks of this nightmare, as we were madly researching everything we could about GBM, I remember reading the survival stats and hoping against hope that Mom might be part of that golden 4% who survive beyond the five-year mark. Nowadays, I find myself merely hoping she'll make it past Christmas.

Tonight wasn't reassuring on that score. Mom was completely unable to stand up from the couch. She tried, God knows, but instead of standing, her knees buckled and she slid off the couch and gracelessly to the floor, with Dad trying to hold her up by her hands. I helped Mom to her feet, and once she was upright, she was able to walk. I don't know what this means, aside from the obvious fact that Mom is weakening. I feed her as well as I can, but we now have to balance quantity with other concerns, like her blood glucose level, which tends to spike periodically-- a possible sign of diabetes. To be honest, I find diabetes to be a relatively minor concern at this point, but Mom's primary care physician, Dr. Royfe, has asked us to monitor Mom's blood sugar levels nightly.

I avoid giving her starchy and sugary food in the evening, and we take Mom on walks as often as we can. But Mom continues to lose weight; her skin is papery, and her muscles hang off her increasingly visible bones, as limp as clothes on a line. Enduring this is hard. I probably won't care when I find myself humbled by senescence and/or disease, but watching it happen to Mom is painful.


OFF-TOPIC ADDENDUM: Before I leave you, let me give you a link to another article that makes it clear we shouldn't be listening to pseudoscience about cancer and antioxidants: the article reminds us that the science on this subject is still being done.


_

Friday, September 11, 2009

imaged

Today's trip to the National Cancer Institute in Bethesda, Maryland is over. Mom had her blood work done and got her MRI done, all without any major hitches... unless you count the traffic backup that suddenly appeared when we crossed into Maryland, and the car accident that blocked the entrance at NCI, almost forcing us to drive to another entrance until one of the two drivers decided to move his car out of the way.

We've put in a request for a CD of the MRI images from today; we'll be picking them up when we go back to NCI on the 16th.

Mom was a trouper about the whole affair; getting up at 5AM couldn't have been easy for her, given her tendency to wake up around 11AM or noon (or sometimes even later than that!). It turned out that we had worried needlessly about Mom and needles: many medical professionals call Mom a "hard stick," i.e., it's difficult for them to find a viable blood vessel in her arms, but today the phlebotomist got in there just fine, causing only a minimum of wincing on Mom's part. On the down side, Mom had difficulty remembering her own birth date, something that hasn't happened before.

I'll be curious to see today's MRI shots during the consult on the 16th, and to hear what our options are, based on what the NCI docs see. We'll pick up our CD that same day, and I'll probably display some of those images here.

In fact, I'm currently prepping a series of images from some of Mom's previous MRIs, to allow you to see the progress of Mom's cancer, her subsequent surgeries for tumor debulking and infection, and the cancer's rapid resurgence. When I eventually show you frames from this latest MRI scan, we'll have a chance to see whether the in-tandem radiotherapy and chemotherapy that Mom had received did, in fact, do something useful for her.

So later today, expect some older MRI shots to appear on the blog, and sometime next week, the most current shots will be up as well, providing you a visual chronology of Mom's progress. Up to now, you've had only my word about what's been happening inside Mom's head.


_

pyeonji (letter)

The house has been quiet... I just hand-wrote three pages of a draft of a letter to Korean relatives-- in Korea-- who still don't know what's happened to Mom. I dropped the ball on this one; they deserve to know, but they've been out of the loop this entire time. I'd also rather not call them right now; I don't trust myself to be able to explain the situation well enough in Korean, and I don't really want to handle more stress from the stressed-out. When people get flustered, they start taking the conversation in all the wrong directions; by writing things down (in admittedly poor Korean), I'm sure to cover most of what needs to be covered. After the relatives have read my letter, they can call me. I may also end up passing them off to better speakers of Korean who have kept up with our situation.

Anyway, the letter promises to be long. These relatives don't read English (well, maybe one or two of the younger cousins do), so there's a lot to tell them. In three pages, I've gotten them as far as the first surgery on April 21. I don't want to write a novel, but I also don't want to provide them with a terse summary that comes off sounding like a cold recitation of only the most salient facts. They deserve better.


_

Thursday, September 10, 2009

tomorrow = big day

Tomorrow, 9/11, Dad, Mom, and I will wake up at 5AM and leave the house by 6 in order to reach the National Cancer Institute by 7AM. Hopefully, we'll beat most of the traffic. Mom is slated to get blood work done, and right after that, she'll be getting an MRI. On September 16, we'll have our first true consultation with Dr. Fine or with one of his partners. Thus begins our relationship with the caregivers who will, in all likelihood, handle Mom's second-line therapy.


_

12

My goddaughter, the eldest daughter of my buddy Mike, turns twelve today. She now begins her final year as a pre-teen. It's hard to believe she's already in middle school.

Two days from now, my buddy Steve turns the big Four-Oh. And two days after that, my brother David turns 33. The poem I wrote for him last year is here.


_

Wednesday, September 9, 2009

a better walk (and what happened after)

Today, Mom, Dad, and I enjoyed the beautiful afternoon weather as we strolled across the grass at Fort Hunt Park. Dad recommended having Mom walk a short distance, then rest at a picnic table, then continue on, so that's what we did, and it worked out fine for Mom. No falls to report today.

As we were strolling, Dad found a golf ball in the grass, so while Mom was seated at a picnic table under one of the park's several large wooden pavilions, she and I did some hand-eye coordination exercises. First, I formed my hands into goal posts and asked Mom to roll the ball across the rough wooden table and into the goal. She finally arrived at a method wherein she "flicked" the ball across with a powerful blow from her right index finger. Her goal-scoring average shot up once she had mastered her own technique. Next, I took advantage of the pavilion's concrete floor and asked Mom to catch the golf ball when I bounced it to her (for those who don't know: golf balls bounce well on hard surfaces like concrete). She was able to catch the ball a few times with her left hand, which was good to see.

We walked out to another picnic table and sat down... just in time to have a beautiful white-and-brown dog run up and sniff at us. "Chelsea!" yelled the dog's owner, obviously perturbed that one of his several dogs had slipped her leash. And "Chelsea!" was what we heard for the next three or four minutes as the poor owner struggled with the fact that his dog (I assume it was his dog) wasn't planning on coming straight back. The temptation of all that open space was probably too strong for Chelsea; from her canine perspective, the park was a whole new universe of scents and textures. I didn't know what breed Chelsea was, but she looked like the sort of dog that would enjoy spending all day tearing around a vast swath of pasture or forest. I pitied the owner, but was fairly certain that Chelsea would eventually calm down and return to him.

Dad and I talked about all this while Mom sat quietly with us, then we got up and headed back to the van. Mom was still too weak to get into the van without help, but Dad was able to assist her. The shadows were lengthening as we departed; the weather was cool and beautiful, so I left the windows open as we cruised slowly around the park's perimeter road and headed home.

When we got home, Mom had another surprise in store for me: she helped me prep dinner. I cooked a shrimp and bacon "crustless quiche," and Mom helped out by removing the shrimps' tails. That saved me a lot of time, and the resultant dish was quite tasty-- shrimp, bacon, egg, milk, green onion, salt, pepper, garlic, cheddar, Swiss cheese, Gruyère, and very little else. I also made a red cabbage salad and brought out some leftover penne pasta for Dad and me (Dad normally tests Mom's blood sugar two hours after dinner, so we go easy on feeding her carbs after lunch), giving Mom a small bowl of yukgae-jang instead of pasta. We sat and watched Obama's health care speech together; I cringed when a Republican congressman shouted "You lie!" at Obama during the speech-- not exactly the way to demonstrate that your side is the more civil and rational one. Mom didn't react one way or another to Obama's speech or to the congressman's breach of etiquette; if anything, the speech served as a painful reminder of what Mom can no longer grasp. She might have been impressed by the president's presence and gravitas, but the content of his speech was lost on her.

This isn't to say that I didn't take pleasure in the simple things. Before Mom went to bed, I had her practice standing up from her "throne" on the couch. We did the same movement three times; Mom needed help every single time, as was to be expected, but she approached the task with determination. Each time she got up, she received a hug from me. And later, when she got up from the couch one final time to go to bed, it was Dad who hugged her and led her away.


_

l'eucharistie

Our thanks to Pastor Jeri and to Mrs. Fatzinger for coming over and administering communion for us.

And now, because the weather is gorgeous, Dad and I will be taking Mom out for a walk. Mom's still too weak to stand up without help, so today's walk won't be long.

Etymological trivia: eucharist comes from two Greek words: eu (good, well) and charis (favor, grace, gift).


_

it lives again

I don't think I wrote about this earlier: our washing machine has been repaired, and Dad bought a one-year warranty covering both the washer and the dryer. Given the amount of punishment we've been inflicting on both machines, this is probably a wise investment.


_

your moment of humor

I used to write more humor, but these days, little seems funny. Occasionally, though, as I scan the blogs and Facebook pages of friends and acquaintances leading more cheerful lives, I'll stumble upon something that gives me a chuckle.

So without further ado, here's an image I found on Justin Yoshida's awesome blog. It shows what happens when you edit two movie clips to make something new: you get Captain Picard attempting to machine gun a bulletproof fat kid:









_

a new afternoon dawns

Mom is up, washed, and about to hit the living room to have lunch (this ritual is entirely thanks to Dad, as is the prepping-for-bed ritual). We'll be starting Mom on her exercise regimen today, doing what we can to help her regain her strength. Later today, Pastor Jeri will be by to serve communion. After that... Dad has more shopping errands to run, and I'll probably take Mom to the park for a somewhat shorter walk-- at least until she seems more hardy.


_

Tuesday, September 8, 2009

a small spill

Sean and I took Mom out to Fort Hunt Park today; I decided to have Mom try the same longer-than-usual walk she'd done yesterday, despite some misgivings about her weakness. The walk was quiet and smooth for the most part, but Mom did end up collapsing, her knees buckling under her when we were somewhere around the halfway point. Sean and I, who were already holding on to Mom, tugged upward as Mom fell, keeping her from smashing anything. We asked Mom if she was all right; she laughed, embarrassed at her weakness, and nodded. Sean and I kept a far firmer grip on Mom as we headed back to the car, and she didn't collapse a second time.

Sean had driven to the park separately; he had to leave for a rehearsal, so I took Mom home, examined and tended to her knee, then changed her pants: they were white, and the knees were somewhat mud-streaked from the fall. Mom's right knee turned out to be fine, but her left knee was a bit raw and scraped; thankfully, there was no bleeding. I washed the area with soap and water, dried it, applied wound cleanser and dried it again, topped it off with ointment and placed a large bandage on top before putting Mom's new pants on.

Before we parted, Sean and I talked about ways to help Mom strengthen herself. Increased protein intake is one line of attack; another is the resumption of the strengthening exercises Mom had done a while back with her therapists. Sean suggested having Mom practice standing up and sitting down while at her couch; that way, if her legs were to give out, she'd plop onto something soft. Sounds like a plan to me; we'll start that tomorrow-- whatever it takes to stave off the inevitable day when Mom will be wheelchair-dependent.

Mom's fine right now; she's sitting comfortably on her couch and watching Korean TV. Earlier in the day, she had sat at our "bar" for lunch (one side of the new cuisine island is essentially a bar), but I'd had to help her get onto her bar stool. As I mentioned before, she's been weak for the past few days. Good thing we all stay vigilant.



DIGRESSION: Before I forget, I owe Mr. and Mrs. Lindow thanks for the food and flowers they had so kindly brought over yesterday. And our apologies to Mom's friends today: we'd had to cancel because Mom had gotten up so late.


_

Mom and her walk

Mom received a visit from Mrs. Lindow and her husband yesterday; I was looking even grubbier than usual, so I spent most of my time downstairs, eventually taking a shower and popping back up in time to say goodbye to our guests (Dad kept them entertained in my absence).

My brother David pulled up as Mr. and Mrs. Lindow were pulling away; not long after, he and I took Mom to Fort Hunt Park for a longer-than-usual stroll. Mom was fine while walking, but she's been having balance and weakness issues for a few days. Today, she wasn't strong enough to lift her leg high enough to get into the minivan. To compensate for this, she grabbed her pant leg at the thigh and tugged upward, using the cloth as a sling to lift her leg the last few inches so that her foot could enter the van. With some assistance, she was able to pull herself into the vehicle and get seated.

Once Mom started walking between David and me, all seemed normal. Later in the afternoon, when we were back home, she did her little dance.

Today, right now at 1:15PM, Mom is still in bed, so Dad cancelled the 2PM visits from her two friends. Getting Mom out of bed and ready is a chore-- one that Dad performs gladly, but a chore all the same. Were Mom to get up right now, it would still be at least an hour before she would be ready to receive visitors.

So for the moment, the house is quiet except for the sounds of classical music from David's XM Radio equipment.


_

visitors

Our visits for today include a washing machine repairman and two of Mom's Korean friends, who will be arriving at 2PM. We'll be happy to see everyone: the washing machine died on us just before our trip to Texas, so it'll be a relief to have it working again; for her part, Mom will be delighted to see her buddies.


_

Monday, September 7, 2009

your pearl of wisdom for tonight

Silence is a grating clangor to the unwhole man.

Found over at Dr. Vallicella's blog.


_

David's iPhone and Mom's little dance

My brother David has had his iPhone for a little while, and seems to have quickly mastered all its various quirks. Earlier this afternoon, he took the phone out and played a video of a Baskin Robbins TV commercial-- you might know the one I'm talking about: it features deliberately bad stop-motion animation of various human and monster dolls dancing around while the following lyrics are barked:

ice cream and cake and cake!
ice cream and cake and cake!
ice cream and cake, do da' ice cream and cake!
ice cream and cake, do da' ice cream and cake!

(etc.)

(Video here. It turns out the lyrics are from the song "Ice Cream and Cake" by the Buckwheat Boyz, whoever they are.)

David showed the video to Mom, and as he and I bopped to the painfully corny tune, Mom smiled and started gently bopping along with us. Hee hee.

Cancer might not be contagious, but if Mom's little performance was any indication, music and dance are.


_

thanks again

Thanks again to my buddy Mike and his family for a nice day out yesterday, and for taking the time to take me out to dinner, then to visit with Mom. It was great to see the family again, to help my goddaughter celebrate her twelfth birthday, and to have everyone over at our house for a brief time.


_

Sunday, September 6, 2009

where I am right now

Sent via BlackBerry by AT&T

outing

My best buddy Mike invited me to join his family in watching a baseball game today; the outing is also for his daughter-- my goddaughter-- whose birthday is September 10. So in a major break from my usual indoorsy, sedentary protocol, I'll actually be leaving the house (cue trumpets and tympani) and watching the Washington Nationals-- known locally by the somewhat uncomfortable-sounding nickname "The Nats"-- kill or be killed. Dad's been prepped on what to do about lunch, and I'm pretty sure I'll be home in time for dinner. If not, I can coach Dad over the phone. Ave, BlackBerry!

Mom's awake and in the bathroom meditating. I told her I was going out; she nodded and told me to have fun.


_

Mom's condition yesterday

Mom went for a walk in the park with Dad yesterday while I worked on our laundry. She hasn't been very talkative lately, but she has been responsive, either verbally or through gestures, when addressed. Once or twice yesterday, she even volunteered a few remarks, which is always encouraging (the frontal lobe is associated with, among other "executive" functions, one's initiative). Otherwise, Mom did what she normally does these days: she sits quietly in the living room and either watches TV or listens to classical music. Someone will often be sitting and talking with her, especially if either of my brothers comes by, and since I'm often in the kitchen, I talk to Mom from across the cuisine island. She's never alone.

So she had a good day yesterday, for someone in her condition. As always, we're thankful for the little things.


_

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.


_

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.


_

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.


_

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.


_

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.


_

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.


_

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.


_

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.


_

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.


_

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.


_

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?


_

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.


_

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.


_

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.


_