I carved four of the five pumpkins, but Dad had the honor of carving the one representing Mom. As I told my buddy Charles, Dad captured something about Mom that I would never have been able to capture.
The two large pumpkins represent the parents. I tried to capture some of Dad's wackiness; Dad captured Mom's grace and humor. It was up to me to carve the three small pumpkins, which represent us three brothers: David, the middle brother, is off to the side and laughing while I chew into Sean's head. It's Halloween, you see, and pumpkins tend to act strangely on that day.
Saturday, October 31, 2009
I carved four of the five pumpkins, but Dad had the honor of carving the one representing Mom. As I told my buddy Charles, Dad captured something about Mom that I would never have been able to capture.
The day is just beginning for Mom. It's Halloween, and I've still got pumpkins to carve before munchkins start appearing at our door in a few hours. Didn't do any carving yesterday; was feeling too down to do so. Today, though, we pick ourselves up and soldier on.
Sometime this weekend, I'll slap up an image from the most recent MRI session, and will add some explanatory commentary.
We were all pretty tired when we got home from NCI. I, for one, had been running on only four hours' sleep. I fixed lunch for the parents, checked out Mom's feet (slightly swollen at the time I checked, but not as bad as on other days), and rotated her so that she could stretch out on the couch and take a nap. I placed a blanket next to her, telling her in Korean that she didn't have to use it if she didn't want to. She wordlessly took the blanket and covered herself with it. I bagged up the stray food in the kitchen, sleepily typed up the previous blog entry, then headed downstairs for a nap of my own. It might have been a dangerous thing to do: Dad was napping at the time as well. There was almost certainly a period when all three of us were sleeping. I imagine Dad woke up first, since he had gone to sleep first, and also because he knew that Mom needed her afternoon/evening meds.
I napped until 8PM, and woke with a "Damn!" when I realized the time. I went upstairs and asked Dad whether he'd taken care of dinner. He had: I'd made a huge amount of super-proteinated soup* for Mom at lunch, and he microwaved a large bowl of it for Mom's dinner. For himself, he'd made a cold-cut sandwich.
I admit that part of the reason I slept so long is that I was depressed. The news about Mom's third tumor, which didn't respond at all to the Avastin, was hard to take. I was happy to hear that the "main area of the cancer," as Dr. Iwamoto had put it, had responded so well to treatment, but those tumors had both been kicked in the teeth by surgery and in-tandem radio- and chemotherapy. The third neoplasm is apparently a law unto itself, and I have yet to research the effectiveness of carboplatin, the drug that Mom's supposed to start next week. Carboplatin worries me because it depresses blood count, something that other meds in Mom's current arsenal also do. The potential for infection continues to rise, and Mom's thrush isn't a good sign.
I've been staying away from Mom lately because of my various illnesses-- the waning bronchitis (which might not be waning) and the new cold-like symptoms. Before I hug her good-night, I give my hands a thorough washing, despite knowing that that might not be enough to protect Mom. But what else can I do? Should I be wearing a biohazard suit, stepping into and out of disinfectant showers every time I have to get near Mom? How realistic is that? For now, I try to keep away from Mom, and when I have to be near her for some reason, such as to serve her food, I try not to linger. At the hospital, I held her hand while we were in the waiting room, but only after slathering on some of the cancer center's ubiquitous antibacterial lotion. I miss sitting with Mom and just holding her hand. She responds so well to people's touch; it seems cruel to deprive her of something she loves.
But I still break protocol to give Mom her good-night hug. Tonight, I came upstairs just as Mom was crawling slowly into bed; she settled in, I washed my hands, then I leaned over and hugged her good night. She squeezed me back, and I was thankful it was dark. That way, she couldn't see the tears in my eyes.
*It's a miso-based soup with seaweed, lots of tofu, and soybean sprouts, with a few eggs tossed in for good measure. I had made enough to last Mom several meals.
Friday, October 30, 2009
It was a long, long wait for a mere 25 minutes of talk with the docs. We arrived at the West Street gate of the National Cancer Institute at 7:30, as expected; we passed through security and made it up to the twelfth floor of Building 10 in plenty of time to check in. A few minutes after we got to the waiting room, Mom was called in to an exam room with several other people. A lady took her vitals, noting that Mom's blood pressure was at the high end of normal: 140/70. We went back out to the waiting room, which had filled up all of a sudden, and a few minutes later Sean arrived (he lives in DC and drove up separately).
Close to 8:30AM, we were called again and taken to an exam room, where we waited until well after 9AM before a Dr. Heery showed up. He said he was a research fellow, and asked us about how Mom's been doing. We gave him our best long-story-short version of what's been going on, relaying the history of Mom's MRSA infection and how this threw off the rhythm of her in-tandem radio- and chemotherapy. The doc asked whether Mom's condition has shown improvement since starting the Avastin; we said she seemed about the same. He performed some neuro checks on Mom and I saw that, in at least one area, Mom had improved slightly: she was able to follow the doc's moving fingertip with her eyes. Even though she kept losing track of the fingertip, this behavior was, nevertheless, a major improvement over her visit to the neurologist in August, when she was so perseverative that she was unable to follow the doc's finger at all.
Dr. Heery also checked inside Mom's mouth, where he noticed some whiteness on the tongue and in the back of the throat. This, he said, was probably thrush, a fungus often associated with steroid use (that damn Decadron again). He noticed some crackling in Mom's lungs ("rhonci," he called it), probably indicative of atelectasis-- a condition in which the lungs aren't fully inflated due to disuse. The danger here, according to the doc, was that anaerobic bacteria tend to proliferate in those parts of the lungs that receive little or no air. Solution: get Mom back to using the spirometer. I also think we need to get Mom exerting herself aerobically even more frequently than we're now doing. She spends so much of her day just sitting in front of the TV. It may be that we can also adapt some of those "airplane cardio" exercises to Mom's situation.
The doc finished his checkup and told us he'd be back with one of the attendings-- Dr. Fine or someone else. Another long wait ensued, and when the door opened again, we found ourselves face-to-face with both Dr. Heery and Dr. Iwamoto. We had met Dr. Iwamoto during our very first visit to NCI, way back on May 6, two days after Mom's birthday. He came with two poster-sized MRI flimsies, each containing dozens of slice-images of Mom's brain, all laid out in neat rows.
The news about Mom was, as it turned out, mixed. The good news was that the Avastin had had a positive effect on the first two tumors. You'll recall that the first tumor had been partially debulked; the second tumor, by contrast, had had time to grow to about the same size as the first tumor (pre-debulking), but had been partially killed by the radiotherapy. Well, both of these tumors now show significant shrinkage.
The bad news, though, was that the third, most recent mass was unaffected by the Avastin, and had in fact grown. I asked whether the Avastin might prove effective against this tumor in the future; the doc thought that would be unlikely. Instead, he recommended that we begin a regimen of carboplatin, to be administered via IV, like the Avastin, but every 28 days, not every 14.
Calendar-wise, then, the plan goes like this: Mom will have another four infusions of Avastin, along with two infusions of carboplatin, before she gets her next MRI. That's another eight weeks' treatment, which takes us into-- what?-- late December, I think. The docs also recommend, as Dr. Meister did, that we get Mom into speech therapy. Dr. Heery's feeling, after doing his neuro checks, was that Mom probably has something to say, but needs help in saying it. This dovetails with our intuition that "she's still in there." She is still in there; we see it in her eyes and in her gestures every day.
So the docs sent us home with advice to call Dr. Meister (who's been in charge of Mom's chemotherapy, including Avastin) to arrange the in-tandem carboplatin/Avastin infusion, to inform him that Mom has been given a thrush prescription, and to see about finding a speech therapist/pathologist.
Right now, I'm too tired and drained to write anything more, but one obvious question for me is whether I'll be able to find work, given what we now know. Since we haven't established that Mom's condition has stabilized, this may not be possible. Leaving Dad to take care of Mom alone is unthinkable. I have no clue as to the third tumor's growth rate; all we know at this time is that it probably doesn't respond to Avastin because its "biology" is somehow different, whatever that means. Not a good time for me to be absent.
Our appointment with Dr. Fine was moved to 8AM-- it had originally been scheduled for noon-- so I'm off to bed now. We have to leave by 6:30AM to be at NCI's gate by 7:30; there's a security check to go through, and that takes a bit of time. Assuming no traffic problem, we ought to make the appointment with time to spare. Poor Mom: waking up at 5:30AM isn't going to be easy for her.
Thursday, October 29, 2009
Sean came by sometime after noon today, while Mom was still in bed. She woke up, and decided to get out of bed a little before 1PM. She performed all the requisite ablutions, dressed, then wandered with me into the kitchen, where she wiped down a couple counters before consenting to go sit on the couch to await lunch.
Sean disappeared downstairs and reappeared wearing Dad's Air Force fatigues: he's been invited to a Halloween party being thrown by some military musicians he knows. I suspect that Sean will probably be the only one in any sort of uniform at that party.
We're all marveling at how thin Sean is. The combination of Atkins and exercise has worked very well for him. Long ago, he used to be well over the 230-pound mark, but now, thanks to years of dieting and discipline, he fluctuates between 170-something and 180 pounds. As a result, Dad's fatigues fit him quite well. The fatigues themselves are a bit outdated; the US military now seems to favor fatigues with computer-created prints.
Mom's finishing up lunch now, and Sean's gone. Once Mom is done eating and has had a chance to let her food settle a bit, she and I will hit Fort Hunt Park. Mom's new shoes ought to fit her quite well: this morning, I was delighted to see that her feet were far less swollen than they had been over the past few days.
Sean didn't want to carve his own pumpkin before he left, so I've got quite a lot of carving ahead of me today. I'll get started on that once we're back from the park.
I'd be out there doing yard work right now, except that Dad, who left the house around 9:30AM, will be out for a few hours on various errands. Mom's asleep, but I'm keeping watch over her, and will have the rare chance to help her out of bed to start her day. She won't actually get out of bed until sometime around noon, but I've positioned myself upstairs to be ready for her, just in case she stirs earlier than normal.
So my projects for today will be of the indoor variety. We still need to carve the last three pumpkins, and later today, after Dad gets home, I plan to make a classic chicken soup-- something Dad's been wanting for a while. Not the most ambitious of projects, but they'll get me through the day.
UPDATE: As my buddy Mike indirectly reminded me, today is a walking day for Mom, and she has new walking shoes. She and I will hit the park sometime this afternoon and pound out those 680 yards.
Wednesday, October 28, 2009
She didn't want to go at first, but this evening, Dad and I took Mom out to Tysons Corner to get fitted for some new, larger, more comfortable walking shoes. We visited the New Balance store and found a very nice pair of NB W811VK walking shoes that have adjustable velcro straps instead of laces.
Should Mom's feet expand further, these shoes will be able to accommodate that. And if/when Mom's feet finally shrink, the shoes can be adjusted downward by tightening the straps, and/or by adding insoles to fill the shoes' interior. We bought the shoes about 2 sizes too large; Mom tried them on at the store and walked around in them. She's not very verbal anymore, but she nodded when we asked her whether they were comfortable.
We ate some faux Cajun chicken in the Tysons Corner "food corridor" (Dad said the mall had a bona fide food court, but it was somewhere else); because lunch had occurred so late, Mom was stuffed after eating only part of her dinner. At one point she looked at me, her cheeks gorged with chicken, and uttered a sigh of defeat, unable even to chew any longer. Dad and I thought this was hilarious. Eventually, Mom was able to down her chicken with the help of a few swigs of water.
The drive home was fast but quiet; we got back in time to catch most of the latest episode of "Great Queen Seon Deok," a historical drama that happens to be about the only Korean drama I actively like. Thank goodness the broadcast is subtitled; a lot of the Korean is both old-style and very formal (the series focuses on Silla Dynasty-era palace intrigue; Seon Deok is the queen who commissioned the construction of Cheomseongdae, one of the oldest observatories in the world).
Dad and I watched the episode with Mom, then Mom watched the other soap opera she follows: "Bap Jweo," which has been given the English title of "What's for Dinner?"* Over the past few months, I've watched a string of "Bap Jweo" episodes alongside Mom with morbid fascination, but have lately been turned off by the various silly and increasingly perverse plot twists.
The nice thing about historical dramas like "Great Queen Seon Deok" is that they can't veer too far from actual history, which minimizes the amount of silliness that can creep into the script. By contrast, regular Korean dramas contain far, far too many contrivances. That's not a bad in thing itself (American dramas and soaps contain their own loads of baloney), but what gets me is that the contrivances aren't played tongue-in-cheek: they are, instead, treated with deadly seriousness (e.g., the idea that a woman can induce her own amnesia, which is based on rather antiquated notions of female hysteria: self-induced hysterical amnesia is of course conceivable, but makes for an awful plot device, especially when used more than once by the same character!).
Korean TV, much like Korean culture in general, isn't big on sarcasm, cynicism, or other forms of layering and subtlety. Koreans love le grand geste, which is why Korean TV acting often looks like stage acting: shouting, flapping arms, clenched jaws, and tears, tears, tears.** Korean movies, though, are a different story. The Korean film industry churns out better and better films every year, and much that goes AWOL on TV can be found in Korean film. In my opinion, Korean movies provide the viewer with a more nuanced view of Korea and Korean culture.
I've gained these insights, especially over the past few months, from sitting with Mom as she quietly watches Korean TV. I'm surprised at how many characters I can now name, and at my newfound ability to describe their backgrounds and the plotlines in which they're involved. There's some shame in this, too: I used to pride myself in disdaining Korean soap operas. In truth, I still do-- most Korean soaps are beyond silly, not to mention endlessly repetitive in their recycling of the same tropes (amnesia being one of them). But I've gained new respect for Korean historical dramas, which can be awfully corny at times, but which make a serious attempt at bringing Korean history to life for the masses. If "Great Queen Seon Deok" is any indication, historical dramas represent the better side of Korean TV.
I wouldn't have known any of this about Korean TV if I hadn't chosen to sit with Mom. It's been a learning experience, and as I continue to watch those MBC America broadcasts, my own perception of modern Korean culture is being altered in both subtle and not-so-subtle ways-- confirming some suspicions and overturning others.
Thanks, Mom. You're still teaching me.
*The Korean title roughly translates as the imperative "Feed Me" (literally, "Give me rice," i.e., "Give me food"); in the context of the show, it's a sexist reference to what a husband might say to his wife when he comes home from work. One character, a very put-upon wife, tells a friend that the words she most hates to hear in her marriage are "bap jweo."
**To be fair, one of my favorite American TV series, "24," is no less unsubtle and un-cynical. Jack Bauer is obviously a cartoon, and the show shouldn't be taken too seriously. But what I like about "24"-- at least the first six seasons of it-- is its grittiness, its willingness to go there, and to tackle major issues of the day, such as the ethics of torture, in a matter-of-fact yet obviously exaggerated manner, all while retaining a modicum of appreciation for the complexities of geopolitics (even as it gets some of its facts wrong regarding US constitutional law). "24" is unsubtle, but self-consciously so.
Mom's MRI took longer than usual today: about 70 minutes. It could be that she was shifting around, or that the techs had trouble moving her onto and off the table, given her weakness. We didn't receive any word about her pre-MRI blood work (patients must arrive 90 minutes before their scheduled MRI to have blood work done); perhaps the docs will fill us in on Friday.
I should also note that Dad did finally get in contact with Dr. Royfe, the parents' primary care physician, earlier this week. He prescribed a diuretic called Maxzide for Mom's swollen feet, the idea being that Mom needs to push her fluids out faster in order to help reduce the swelling. Dad gave Mom her first half-tablet yesterday; we were told to start with half a tablet, once per day, then move up to a whole tablet if there was no noticeable effect on Mom's swelling. Today, she had a whole tablet, but after waiting several hours for the medicine to take effect, we saw that her feet were as swollen as ever.
As far as we know, based on what various doctors have told us, Mom's swollen feet are the result of the Decadron (steroid) she's been taking. Her blood work, the last few times she's had it done, has revealed nothing alarming, which seems to confirm that Decadron is the likeliest explanation for the current problem-- not overly salty food or the over-ingestion of carbs.
We're going to keep Mom's feet elevated for the rest of the day, and Dad will probably speak with the doctor again tomorrow. The swelling might be a natural consequence of the steroids, but if you saw what I've been seeing, you'd be pretty worried, too.
Tuesday, October 27, 2009
We're back from our pumpkin hunt, having found a garden center that was selling a slew of tastefully sized, cheerfully plump pumpkins. We bought two large pumpkins and three small ones to represent the family, and will probably start carving tonight after dinner.
There's good news and there's bad news about my sickness. The good news is that the bronchitis seems, at long last, to be fading away. I still rattle, but the frequency of coughing is decreasing, and I'm hawking up less phlegm. This change became apparent during our trip to Skyline Drive, and the trend has continued. After a full month, the bronchitis is, slowly and grudgingly, leaving the building.
However, even as the bronchitis steps out, we've got new party guests coming in. Yesterday, I had a slightly elevated temperature for a few hours, and also had a sore throat and a stuffy nose. Thanks to the blockage, I haven't been able to taste food very well for the past two or three days.
As much as I love cold weather, a stuffy nose usually comes with the territory. I may need to eat some spicy soups to get that problem under control; nothing unblocks me quite like red chili pepper.
If the assault on my immune system has been this intense, I can only wonder how Mom's doing. Thus far, she hasn't been coughing, nor has she been feverish, and she hasn't complained of headaches in a long time. We should probably speak with her primary care physician, or with her new infectious disease specialist at Fairfax Hospital, about how to handle the coming winter, what our guests should do when they come over, etc. It's a long period of cool and cold weather ahead; infection is potentially as deadly to Mom as her cancer is.
Monday, October 26, 2009
Tomorrow's a free day: no visitors. Our upstairs floor desperately needs cleaning (our apologies to the Merrills), Mom needs to go have her walk, both the front and back yards need mowing and raking, and I'm thinking that we should take Mom out pumpkin-shopping in the afternoon. It's supposed to be rainy tomorrow, so the pumpkins* might have to wait, but we might also be able to bundle Mom up and get her ready to travel.
Mom was occasionally verbal today. She heard me coming back upstairs to say "good night" to her, and I heard her ask Dad, quite distinctly, "Where is he?" We had our usual good-night hug, and I told Mom I loved her. On some nights, she whispers "I love you" back to me; tonight wasn't one of those nights, so she offered her smile instead. I mentioned that we might go pumpkin-shopping tomorrow, and she gave me that particular stare, the one I've come to read as, "No, I don't really want to, thanks." When I asked her outright whether she wanted to go out tomorrow, she said, again distinctly, "We'll see."
Despite her lack of enthusiasm, I was both touched and amused by Mom's Korean-style politeness. Many Koreans, in situations where they feel obliged to be polite (usually when in conversation with strangers or with higher-ups at work), will avoid offering a direct "no" to something they find objectionable, implausible, or otherwise disagreeable. "We'll see" is a Korean "no."** And in this case the subtext, the reason why Mom answered politely, was that she didn't want to disappoint her son.
She's trying so hard to be normal. Mom wants to converse, she wants to participate in everyday exchanges, but it's not easy for her. Some part of her still feels the rhythm and flow of conversation; she understands the process holistically, but can no longer participate in the particulars. The ideas are there in her head, both cloudy and coalescing, but the ability to express them has been severely hampered, as has her ability to feel frustration at this fact.
If Mom's adamant about not wanting to go hunt down some potential Jack-o-lanterns, that's fine; we'll just take her walking somewhere and bring her right back home. She can enjoy watching me carve pumpkins later.
*The mowing and raking might also have to wait.
**On the TV show "House," this would be considered a form of deflection-- i.e., avoidance behavior.
We got back late from yesterday's jaunt out to Skyline Drive. To be fair, we started late, too, but our trip was unexpectedly prolonged when we discovered that every tourist on the east coast had decided to go to Skyline Drive. Who can blame them? It was a magnificent day to be outside, and a Sunday to boot. The traffic jam into the park started in Front Royal, the town closest to Shenandoah National Park's northern entrance, where Skyline Drive begins at Mile 0. We crawled past the park's entrance gate (Dad gave us his lifetime senior citizen's ID to flash at the park rangers, so we got in for free), then continued crawling for about the first seven miles.
The pace was painful, but it helped us to appreciate the scenery in a way that none of us had up to then. Although we've all hiked and camped in the park many times, this was our first opportunity to crawl along the road itself.
After ten or so miles, we decided that doubling back would be unwise: the traffic leaving the park through the Front Royal exit was as bad as the influx. Instead, we continued driving south until we reached the Route 211 exit toward Washington, DC. Before leaving the drive, however, we made one pit stop at Elkwallow Wayside to allow antsy passengers a restroom break, as well as to let Mom stretch her legs and walk a bit.
In all, it was a fantastic trip on a perfect day. Even the crowds and traffic jams weren't a problem: the mountains and trees and sky were too flush with autumnal exuberance to be diminished by human distractions. Mom, for her part, took it all in, not napping once despite hours on the road. I drove us to the park, and my brother David drove us back home.
It was a good day on the culinary front, too. We had started the afternoon with my own version of a BLT: prosciutto with Gruyère, broiled to crispness, with baby spinach and thinly sliced tomatoes, all on toasted multigrain bread with spiced-up mayonnaise. I decided to name this sandwich The PTSD: prosciutto, tomato, and spinach delight. The "D" might also stand for "disaster" or "destruction": the sandwich is so good that you'll suffer post-traumatic stress disorder after eating it. Heck, the very sight of the sandwich might put you into an ecstasy-induced coma.
That was lunch, just before the trip. Dinner, when we got back, was chili dogs. The chili was an amped-up version of the leftover homemade taco sauce from the previous meal-- I merely added two cans of pork and beans. David also left us a four-berry pie (he often purchases such pies when out on company trips); we baked it, but the hour was late, and David felt the pie needed time to cool and settle before it would be edible. We might tackle and devour it tonight.
Today, the weather is once again fantastic. Dad's off to Walter Reed Medical Center to meet with military docs about his back. He's had nasty back problems for years, and it's gotten to the point that he requires cortisone injections every five or six months in order to function. The alternative is dangerous surgery, so he's sticking with the injections for now. Dad's last injection occurred in early April, just a few days before Mom presented with symptoms.
Mom's got a visitor today: Mrs. Merrill, who will be here any moment. Guess I'd better sign off here.
This is the week when we find out what's been happening inside Mom's head. She gets her MRI on Wednesday the 28th, and the whole family will be present at NCI on Friday the 30th to hear what Dr. Fine has to say.
I realize I may have built this week up in people's minds, but this truly is an important time. Will we find out that Mom has a new lease on life, at least for a while? Will we hear that the Avastin has done nothing to stop her tumor growth, and that new tumors have formed? Will we need to accelerate certain grim plans and paperwork, or will we discover that we have some room to breathe? While I doubt the Friday consultation will answer all our questions (it may, in fact, add more to the pile), our family considers that meeting to be pivotal. Keep those fingers crossed.
Sunday, October 25, 2009
This resonated with me when I read it over at Dr. Vallicella's blog a few minutes ago:
Human reality is an ever-shifting play of perspectives and evaluations and, insofar forth, bare of ultimate reality and so not to be taken with utmost seriousness. All wisdom traditions teach the need of detachment or non-attachment. You are grasping at straws and chasing after shadows if you seek your ultimate reality in the broken mirrors of others' subjectivity. And your mirror is broken too.
Merken Sie gut! Human reality shouldn't be taken seriously, but ultimate reality should. This goes doubly for members of "shame" cultures throughout the world: people in those cultures put too much stock in status and prestige, measuring their worth by where they stand among their fellows. Such people view honor as something contingent upon what others think, instead of linking it to the pan-cultural notion of integrity: the idea that inside and outside should evince a harmonious correspondence-- thought, word, and deed all working together.
It's a nice day out, and we'll be motoring out to Skyline Drive with Mom, possibly to do a bit of walking, or just to go and see the sights from inside the car.
Will my brother David be able to make it to our house for our scheduled 11:30AM departure? We'll see. The poor guy usually sleeps in on Sunday morning after working four out of the seven previous nights. Fridays and Saturdays are especially tough, because he'll work until dawn. On Sundays, we don't normally see David until sometime after 4PM; if he makes it here by 11:30AM, it'll mean he's sacrificed most of his sleep time to join us.
Which means, in turn, that we won't force him to drive the van out to Shenandoah. He can doze while we cruise.