Saturday, October 10, 2009


"Phlegmatic" doesn't mean the same thing as "phlegmy," but I've always wanted to use the word in a blog post title. "Phlegmy" is a good word, too: it sounds vaguely French. "Greetings! I am Jacques Flémy, and today, we study the mating habits of porpoises!"

I took Mom's Bactrim last night, and an hour after downing the pill, it felt as if things had begun to clear up. I experienced about four hours without phlegmy bronchial sounds, and didn't cough the entire time.

But late this morning, I woke to a rattling chest and plenty of goo. My mother's Bactrim dosage is set for three times per week, which seems to imply that each tablet provides a lingering effect. Was last night's bliss the result of a placebo effect? Was this morning's nastiness the result of leftover buildup from before the Bactrim began to kick in? I'm beginning to think the answer to the first question is "yes," while the answer to the second question is "no." The pill alone can't explain my swing from chest-rattling to clear within an hour, and because I've beeen coughing up mucus since waking today, I doubt that this morning's buildup is simply the dead remains of a defeated infection. Upshot: I'm still infected, and still producing. What most likely happened is that the pill did little to nothing.

So I'm probably going to visit a clinic of some sort-- somewhere cheap, for the uninsured. Of course, in the States, "cheap" may mean $150-250, depending on where I go. I know a place on Route 1, not far from home, where I can probably get looked at and have some meds prescribed, all at a reasonable price. It's a place I've visited before, back in the 1998-2002 period when I lived in the apartment complex next to the clinic. The doc might even remember me.

More news later. It's 3:14PM; Mom's done with her shower, and about to step out and have lunch.


is it pneumonia?

I'm beginning to suspect I have pneumonia. This might be the "walking" variety, since I still seem to be pretty functional. Until Friday afternoon, my main symptom was just the eerie rattling breath sounds and the mucusy, from-the-bronchi cough. But new symptoms appeared during lunch: I coughed up a tiny bit of blood (just a wee drop), felt slightly nauseous, and in the evening, I felt a little feverish, though not for long. Blood, nausea, and fever are all associated with pneumonia (which, I discovered, comes in several varieties-- bacterial, viral, fungal, and "other"). I obviously can't self-diagnose, but because this problem has been with me for a while now, pneumonia is looking more and more likely. Dad also thinks laryngitis is a possibility, but I'm not feeling any of the pain or difficulty breathing associated with it.

As always, I continue to wash my hands religiously, though I try to avoid antibacterial soaps where possible. Don't want to contribute to the superbug problem.* I also continue to wear an N95 mask, and have, sadly, stopped kissing Mom on the cheek. Tonight, I did something not quite legal and "borrowed" one of Mom's Bactrim tablets. Bactrim is an antibiotic that is prescribed for, among other things, pneumonia. If what I have is bacterial, and if it is indeed pneumonia, then I ought to see an effect by tomorrow morning or afternoon. We'll see. I'm supposed to go see a flick in the evening, but if I'm not better by then, I might have to cancel.

That's primarily what I'm doing to keep Mom and Dad protected from my cooties. The procedure isn't perfect, so to tie up all the loose ends, I occasionally bomb my bedroom and other areas with Lysol.

*Can creationists explain why bacteria evolve? I'm aware that many creationists have no problem with bacterial evolution, or with minor evolutionary variations within species: they simply refuse to believe that one species can evolve into another. But what about the creationists who claim that there's no such thing as evolution, period? How do they explain the arrival of superbugs?


Friday, October 9, 2009

many thanks

Our thanks to Mrs. Cheong Burns for bringing over a mountain of steamed shrimp. Dad didn't get home until late, so I peeled all the shrimp and converted them to a topping for fettuccine Alfredo, quick-frying them in olive oil and butter, with fresh crushed garlic and some Italian spices added.

Also, our thanks to Pastor Jeri for stopping by. I'm sorry I was downstairs for most of her stay.


"best day in a while"

Dad's describing yesterday as Mom's "best day in a while." He's not basing this on how verbal Mom was, but rather on her performance during her walk, her generally alert demeanor, and the vigor with which she attacked such tasks as mounting the deck stairs and climbing onto her bar stool. Like me, he was also happy to discover that Mom has regained some weight.

I'd agree that Mom had a very good day yesterday, clinically speaking. Whether it deserved to be called the "best day in a while," though, is a matter of some debate. My two major worries, right now, are (1) the risk Mom runs of getting infected by me or by someone else (Dad's had the occasional cough and sneeze, yet insists he's fine), and (2) that Mom's current lack of verbosity has something to do with the cancer spreading rearward, toward her language centers. This latter worry may be nothing: Mom is usually quiet for long periods, making it hard to judge how verbal she really is. She becomes more verbal when she has to talk on the phone with someone, so her silence might not have anything to do with the cancer.

Mom got out of bed late today; despite waking up sometime after 10AM (I saw her around 11AM, with her eyes open), she didn't get out of bed until sometime past 2PM. I don't know how well she slept, but I wonder whether she had a rough night. She and Dad are upstairs right now, talking with Pastor Jeri. I'm about to go up and join them.


awake but not up

I checked on Mom about a half-hour ago. She was awake, but still in bed. That's a good thing: what's scary is when Mom tries to get out of bed by herself, without her helmet on.

Dad's already back from his dental appointment; he plans to go out shopping again, but is waiting to help Mom out of bed to get her day started.

I spent my night downstairs alternately coughing and spraying all the areas I've inhabited with Lysol. I still wear my mask, for fear of giving anyone else whatever I have. With Mom still in bed and me still sick, I'm going to put myself down for a bit longer, then take care of lunch for Dad.

Bleh. It's a lovely day outside. I should be tarping over the weeds and mowing the rest of the lawn.


Thursday, October 8, 2009

old fart

My buddy Sam Molina, who will be visiting us on October 14, turns 40 today.

Happy Birthday, man. May you scale many mountains.


back home

Mom's Avastin infusion went well, according to Dad. Her blood work turned up no abnormalities, her vitals were great, and the best news of all was that Mom has regained nine pounds. The protein overload is working, which makes me very happy. Mom can continue to expect more protein bars, more meat, and more tofu in her diet. Whatever it takes to counteract the corrosive effects of the Decadron.

Since Fort Hunt Park was on the way home, we decided to get Mom's walk in right away. She did her 680 yards just fine, and when we got home, she attempted the deck stairs instead of the wheelchair ramp. Dad helped her up the stairs somewhat, but Mom's success was mainly due to her determination not to do things the easy way.


...and here we are again

I've just parked after dropping my parents off at Dr. Meister's building. Will be waiting here on the parking deck's top level until Dad calls to tell me the session's over. Ah, the chauffeur's life.


Wednesday, October 7, 2009

once more unto the doctor's office

We're off to Dr. Meister's office again tomorrow morning for another 10:30AM appointment, this time for Mom to get her second Avastin infusion. I'm still rife with pestilence, so I might have to sit outside in the parking deck again. We'll see.

Mom's big sis called tonight. Dad usually hands Mom the phone, which Mom then puts to her ear. It's a gamble as to whether Mom opens with a greeting. Very often, all she does is hold the phone against her ear and wait for the caller to say something, which is simultaneously amusing and poignant. Sure enough, that's what Mom did tonight while she finished eating her dinner.

Mom's day isn't over after the Avastin session, though: Pastor Kim will be coming over, and then Dad will go to his second caregiving seminar. Somewhere in there, we also have to squeeze in a walk in the park.

This might not seem like much of a schedule if you're used to getting thirty things done in a day, but for Mom, who's easily tired, this is more than enough.

A big thank-you to my brother David, who came over today, helped cook chicken for dinner, served ice cream for dessert, and even did the dishes for us. I note for posterity that dinner was mixed rice, homemade oi-kimchi, homemade cole slaw, and chicken done up with either American barbecue sauce or Korean ggan-poong-gi sauce. Lunch, for Mom and me, was homemade ddeokbokgi and oi-kimchi, with some leftover soup for Mom. Dad, meanwhile, had a good old PB&J sandwich.



Mom's trip to the doctor's office today went quickly. Because I'm still coughing up phlegm and rattling when I breathe, I didn't enter the building. Today, my role was reduced to that of chauffeur: I parked at the top of the crowded parking deck, opened the windows, and enjoyed the fabulous morning. Today was close to my idea of a perfect day: cool, breezy, and partly cloudy, all with very little humidity.

I spent the afternoon napping, mainly to catch up on sleep.* I woke up to find that Mom's been sitting in the living room with Dad, watching TV. She just complained of a headache, so Dad's given her a Percocet.

Because all three of us sons are sick, the main worry is that Mom will catch whatever we have. I've been staying physically apart from Mom, and continue to wash my hands frequently, especially during meal prep. Every time I hear Mom coughing-- which is only once every few hours at most-- I worry that she's gotten whatever we have. But Mom isn't coughing a lot, and Dad doesn't hear anything wrong with her breathing. So far, so good.

*My Korean relatives have called us a few times in the morning, around 9AM; they don't realize it, but 9AM is about halfway through my regular sleeping schedule (roughly 5:30AM to 11:30AM). When Dad passes the phone to me, I'm usually groggy, prompting my relatives to ask what time it is over here. After all, what sane person isn't awake by 9AM, right?


blood work today, Avastin tomorrow

We're off to Dr. Meister's office this morning so that Mom can have her labs done at 10:30AM. Tomorrow, also at 10:30AM, we'll go back to the same office so that Mom can have her second infusion of Avastin. Tomorrow's infusion will last only 60 minutes; you'll recall that the first session took 90 minutes. All subsequent sessions will take only 30 minutes.


Tuesday, October 6, 2009

silent but smiling

Mom hasn't been very verbal today. She did exclaim once, when she saw how beautiful Cheong Burns's flowers were ("They're so beautiful!"), but has said little else all day long. On the plus side, she had a good walk in the park today-- about 660 yards, done at a strong, steady pace along a different stretch of the park.


having a blast

My buddy Sam Molina turns 40 on October 8. Lucky him: he gets fireworks.



Many thanks to Cheong Burns for the lovely flowers she dropped off today, and to Pastor Jeri for stopping by. We're going to try to squeeze in a walk at Fort Hunt Park before the rain begins.


...and then there was Sean

Well, whatever's going around has gotten to my brother Sean, too. He's at the house, wearing a mask and coughing up phlegm (no, he's not coughing it into his mask). If his sickness follows the same arc as mine, he'll get a sore throat in a few days.

Y'all watch out!


Monday night burgers

Mom's adventure in the kitchen and dining room on Sunday afternoon wiped her out. She eventually made it back to her spot on the couch, and remained there most of the day.

David came over around 7:30PM; we had burgers. Even Mom had one (which I cut in half to make it easier for her to eat). She took her time eating it, which was fine by me. Mom ended up getting a small bowl of Korean soup to go with her American meal; in general, she's been much better about eating Korean food than Western food. Dad, for his part, raved about the burgers. If they passed the Dad test, they must be OK.

For dessert, I made a makeshift pain au chocolat using some homemade fudge and "instant" croissants-- the cheapie kind that come in pop-open cardboard cylinders. Dessert turned out pretty well, and I think the corn salad I made for dinner was also appreciated.


Monday, October 5, 2009

neatening up

Dad's out on a shopping errand, and Mom is insisting on being up and about today. As happened a few days ago, Mom was irritable and stubborn when Dad tried to get Mom out of the bathroom, but once she was on her feet, she was ready to move on. Today, though, she was grouchy at both of us guys for forcing her to move around-- a good sign, since that indicates the return, at least partially, of her ego.

Mom tidied up the dining room, then went back into the kitchen and slowly washed the dishes, despite my repeated insistence that all those dishes were bound for the dishwasher.

I wonder if all this means the Avastin is working. It's hard to tell. At times, Mom's behavior seems as perseverative as ever, such as when she puts some pills into her hand and then stares at them for minutes before doing anything else. At other times, Mom seems to be exerting her will, actually taking initiative and making decisions on her own, even to the point of waving us off to prevent us from helping her. If that signifies the return of her fighting spirit, then that's a good thing.

But these very different behaviors leave me with little clue about the overall picture: are the tumors still growing? Are they shrinking? Have any new ones appeared? Only an MRI will clear that up, and Mom won't have her next one until the end of this month: October 29. On October 30, we'll be talking with Dr. Fine and his team again, and at that point we'll have a better idea of whether the Avastin has given Mom a temporary reprieve from the relentless onslaught of her disease.

Right now, Mom is defiantly upright and in the kitchen. She appears to be reading something in there. I have no idea what, and I don't care: I'm just glad to see her on her feet instead of seated in front of the living room TV.


sit rep

Dad's away at a dental appointment, Mom's awake but still in bed (she probably won't get out of bed until well past noon), and I'm awake but harboring a sore throat-- something of a downturn from yesterday, when things seemed to be improving. Will gargle with salt water, take the requisite meds, wear a mask around Mom, and see how things go.

UPDATE: I typed the above paragraph, went back to Mom's bedroom, and discovered that she had gotten out of bed and into the bathroom all by herself. Such moments are an occasion for simultaneous pride and terror: I'm proud that Mom is mobile and spry enough to move herself around like that, but because she never remembers to put on her helmet at such times, and because she's unsupervised, her feat generates a good bit of post hoc terror.

UPDATE 2: Dad came home from his dental appointment not long after Mom's achievement.


Sunday, October 4, 2009

up and very down

It was a happy Sunday, as far as Mom's walk was concerned. Fort Hunt Park was a crowded place-- something we don't normally see, because we usually do our walks with Mom on weekdays. Today, it was all about dogs on leashes, running and biking kids, billowing streamers of grill smoke, laughter, shouts, and cooking odors. We joked about crashing one of the parties, as it was getting close to dinnertime. I'm proud to say that Mom walked the same distance (roughly 680 yards) that she had walked the two previous times, occasionally squeezing my hand and even reassuring me that she was fine, just fine. Earlier in the day, she had looked at my eyelid and declared, very distinctly, "You look better." Except for the loose skin, the eyelid is just about back to normal.

In the evening, however, Mom was a bit of a difficult customer: she refused to down her Decadron pill, either holding it in her hand for minutes on end or leaving it on the arm of the couch while she watched TV and steadfastly ignored our entreaties to take the medicine. Eventually, Dad settled on the hospital solution: he ran out and bought apple sauce, which proved to be a winner. He put the Decadron on a spoon, scooped apple sauce onto it, and fed it to Mom-- with another spoonful of apple sauce as a chaser. Crisis averted.

Sadly, however, Dad learned that a friend of ours, Julie Burns, had died of cancer in 2007. We hadn't been in touch with her for a long time, and I think Dad had tried to contact her to tell her about Mom's situation. Little did we know that Mrs. Burns had had her own battle with the beast. I'm very sorry to hear about her death. She was a wonderful woman, with two great kids (who are happily married, I hear). She often allowed me to come over to her house to play video games with her son.

Many, many years later, when I was giving a small lecture on Buddhism at an evening "class" being held at my church, Mrs. Burns was in attendance. She was quiet throughout my presentation as I talked about the Buddha's life and some salient points in Buddhist metaphysics, but after everyone had adjourned, she walked up to me with a frown and said, "I'm a Buddhist, and I never heard any of what you said growing up in Taiwan." I had to laugh-- she was right. Reducing Buddhism to a dry set of principles, stripping away the religion so as to make it seem as if it's only a philosophy (hence all the hilarious debates in the West about whether it's a religion or a philosophy-- a conundrum of the West's making), turns it into something unrecognizable.

The same problem occurs when you take a person and reduce her to a few "essentials." Summarizing the life of Julie Burns, conveying her "essence" through a few sentences in a humble blog post, is an impossible task. I wouldn't be surprised if someone who knew Mrs. Burns well were to read this blog entry, frown, and say, "I knew Julie for years, and I never heard any of that about her." No summary could do her justice. I don't envy the person who had the unfortunate task of eulogizing her.

So we're sad tonight. My very belated condolences go out to Mrs. Burns's friends and loved ones. I remember her beauty, her smile, and how hard-working she was. Mom doesn't react strongly to much these days, but even she was floored this evening, when Dad told us the news. We never had the chance to say goodbye. Our thanks to another family friend, Mrs. Bentley, for giving us the news about Mrs. Burns's passing.


the Saturday jaunt

David came over yesterday; he went out with Mom and Dad on a drive up and down the entire length of the George Washington Parkway, which starts at Mount Vernon Estate (walking distance from where we live) and extends all the way into Maryland. Unfortunately, David couldn't stay for dinner, but we're glad he was here for Chuseok, even if it was just for a short while.


how Mom "decides"

Dad brought Mom out around 12:30 today-- early for Mom, given her frequent late awakenings these past couple of weeks. I was in the kitchen, preparing to have a simple bowl of cereal for lunch. With Dad next to her, Mom sauntered up to the bar and gave me a matter-of-fact look that she had perfected even before the cancer. In the BC (before cancer) era, the look could mean one of several things. Nowadays, it most often means, "Gimme food, boy."

So instead of whipping something up for Mom, I decided that this would be a good opportunity for her to practice her decision-making skills. With the loss of so much of her frontal lobe, Mom often needs help with making decisions and taking initiative. She's able to express when she doesn't want something, but has trouble verbalizing an active preference. (A lot of un-brain-damaged people seem to live their lives this way. What's their excuse?) For that reason, we have to do what we can to get the remaining functional parts of her brain to take over the executive functions that were shorn from her.

It's an exercise we've done a thousand times before: we present Mom with a decision, usually framed as "Do you want (to do) X or Y?" What usually happens is that Mom will remain silent for a period, then will drift away from the decision to concentrate on something else. Keeping her on track often means repeating the original question, but Mom's no fool: despite the brain damage, she's aware that we're trying to keep her on track, and if we re-ask our question too many times, she begins to show annoyance. We treasure the annoyance-- it's a reminder that Mom is still with us. But the process can't go on infinitely. If time's a-wasting, we eventually have to decide for Mom, because she hasn't bothered to decide for herself.

Today, then, I asked Mom whether she wanted kongnamul-guk or ddeok-guk (both of which I'd cooked yesterday; the ddeok-guk was originally ddeok mandu-guk, but the mandu were all slaughtered during dinner). Mom paused a long time, then gestured with her head toward my cereal. So-- not X or Y, but Z.

This was both unexpected and encouraging. Mom had seen that both Dad and I were planning to eat cereal, and she wanted to join in. So now we were at another crossroads: I took out four different types of cereal and displayed them before Mom. "Which cereal do you want?" I asked. I tapped each one, and with each tap said a number: "One, two, three, four."

Mom said nothing. Deciding from among four alternatives was harder for her. She stared and stared, then eventually shambled around to the other side of the bar, took one of the cereal boxes in her hand, and tried putting it away. At first, I thought that Mom was using this method to pare down her choices, showing me, through a process of elimination, that she wanted the Last Cereal Standing.

Alas, that wasn't what she was doing. When she got to the last box, Honey Nut Cheerios, she tried putting that one away, too. As she was awkwardly stuffing the box into the pantry cabinet, I asked her again, "Mom, which cereal do you want to eat?"

In a move that looked more like disgust at my persistence than anything else, Mom took the Cheerios back out and handed it to me. I decided to end the exercise there: Mom needed to eat, and it would have been silly to prolong this. Since Cheerios is what she handed me, Cheerios is what she got.

This is the sort of behavior that I'll want to discuss with Mom's neurologist. Part of me feels that Mom may actually have been trying to reach a decision, but her crossed wiring now prevents her from doing so in a smooth way. The behavior wasn't exactly perseverative, and the fact that Mom had enough initiative to suggest cereal instead of Korean soup was significant.

It's possible that the selection of cereal was done to avoid Korean soup as an option. As I mentioned, Mom is still capable of resistance/avoidance behavior: she often knows what she doesn't want, but can't express that fact unless or until she's confronted with the undesirable thing/option. But if Mom's "decision" was actually avoidance behavior... then what was she implying? That yesterday's soups were bad? I ask this only half-jokingly: Mom normally loves my soups, and yesterday was no exception: she ate all of her lunchtime kongnamul-guk, and most of her dinnertime ddeok mandu-guk.

Let's assume that she asked for cereal despite liking yesterday's soups. If that's the case, then we're looking at proactive decision-making, which is encouraging. Mom was "in a mood for" something other than the options presented to her; she already had an idea of what she wanted, but perhaps the idea hadn't crystallized until she saw Dad and me with cereal. Her head-gesture toward the cereal, then, was a move toward an option, not away from one.

If we don't assume Mom liked the soups, then we're pretty much left with avoidance behavior as an option. This is a plausible interpretation of Mom's actions, but now, the head-gesture acquires a profoundly different meaning: if it's a function of avoidance behavior, then it means that Mom is merely latching on to the first non-X and non-Y alternative she sees.

No matter how I interpret Mom's actions today, the behavior itself was unusual, and for the moment, I choose to view it optimistically. Today, I witnessed a glimmer of initiative.


gone down

A quick update on my infected eyelid: the ciprofloxacin seems to have worked. It's been a few days, but the swelling has finally begun to subside rather significantly. The skin of my left upper eyelid had been swollen for so long that the distension may actually have caused the skin to stretch. Last night, when I noticed the reduction in swelling, I also noticed that the eyelid was looking slightly wrinkly. This isn't the sort of thing that a person standing a few feet away from me might notice, but the wrinkles were evident when my face was a few inches away from a mirror. Will the skin eventually re-tighten? I have no idea. For now, though, the important thing is that the swelling has gone down.