busy

It's been a busy Saturday. I've been inside, prepping food for a crowd and watching over Mom. Dad's been outside, moving tables, doing the burger and 'furter grilling, and helping the workers. Pastor Jeri stopped over for a bit, as did at least one of the workers' wives. Mrs. Kopf also stopped by with yet more food. The wheelchair ramp construction crew, about ten strong, has been out in the heat all day, toiling ceaselessly.

Progress on the ramp seems brisk to my untrained eye. I'm definitely having flashbacks to our recent renovation; the back yard is once again filled with people, lumber, and equipment. I'm not sure whether the ramp will be finished by tonight, but with so many people on task, it looks as though the team will succeed in making this a one-day affair.

Our family's thanks go out to all the people who have contributed to today's work. Thanks especially to Dad, who's been almost literally moving mountains to make things as smooth as possible for the workers. Last night, Dad even made two of his famous rum cakes, which were a hit during the 2PM break today.

More later. Break's almost over for me.

UPDATE, 3:56PM: Dad says a storm is moving in, which might cut things short. The ramp has definitely taken shape. I'm marveling at how fast this was done, as opposed to the construction of our deck, which took months. Many hands do indeed make light work.

I also wanted to note some good and bad news on the Mom front. Bad news first: Mom remains forgetful, and she also exhibits some of the obsessive-compulsive behavior we'd been warned about, behavior that normally accompanies damage to the frontal lobe. The bright side is that, when Mom toddles into the kitchen and starts cleaning something, she really cleans it. On the not-so-bright side, it's often necessary to pull Mom's focus away from one activity to get her to focus on something else. The other bit of bad news is that Mom's balance remains precarious. She can walk, but today she had trouble turning around while in the kitchen. I'm being a bit negligent, right now, by typing this update: Mom is outside with Pastor Jeri (Mom enjoys her company; I'm glad Jeri came back to see her), but Dad is helping the guys, which leaves Jeri to watch over Mom.

The good news, though, is that Mom is trying to re-engage with normal, everyday activities: putting on makeup and working in the kitchen, for example. Today, Mom de-stemmed and washed a bunch of strawberries; this was a huge help to me, as it allowed me to get dessert out to the crew in a more or less timely manner. She also washed dishes and trays after lunch was done, which was also an enormous help. Mom is still shy about appearing in front of people in her helmet, but that's changing. The fact that she's out there right now, watching the construction happen, is a testament to the diminution of her self-consciousness.

I'll end this update with a special note of thanks to Mike Frady and his work crew, as well as to the crew from the local Home Depot. Dad has taken down everyone's names and has shot some pics of the ramp-in-progress; either tonight or tomorrow, a post specifically dedicated to today's construction will be written. I still can't get over how quickly the ramp is forming.


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gracias, comme toujours

Many thanks to Mike Frady and Don Dickstein for stopping by and dropping off supplies for tomorrow's rampfest. Our back yard is starting to acquire an Amish ambiance, as if we were setting up for a barn-raising. At the same time, I'm being reminded of how the yard looked back when renovation was in full swing.

Thanks, as well, to Ruth Guirard, who came by to drop off enough food to feed an army. We'll definitely enjoy the rice, beans, and salad. Thanks, too, for the raspberry vinaigrette: my favorite salad dressing.

Dad came back from an errand at the local Home Depot on Route 1, and told me that the manager-- a gent named Tony, who became familiar with Dad during the madness of our of September-to-March renovation-- decided to donate a mess of supplies to us: material to build a stairway off the wheelchair ramp, as well as a shower chair, a "bath transfer" chair (it straddles the bathtub's edge, allowing the user to sit on it and swing safely out of the tub without falling), and grab bars to allow Mom a chance to stand up in the bathroom without fear of collapsing. The price tag for all this would have been over $200, possibly over $300, but instead, it was all free.

People are something else.


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garrulous

The trip to and from the hospital was pretty straightforward. Driving and parking weren't a problem, and Mom's session began promptly at 2:10.

Mom and I had arrived about 25 minutes early, and the waiting room was fairly full. We found two chairs against the wall, separated by a small table on which were piled some magazines. Before I sat in one of the chairs, I asked the lady next to it whether anyone was sitting there and hoping to come back to it.

Little did I know that I had flipped on a switch. From the moment I addressed the woman until Mom came back out from radiotherapy, I was subjected to an constant stream of verbiage. The discourse ranged over a variety of subjects, with special attention paid to the virtues of marijuana over cigarettes ("What I wouldn't do for a doobie!"). The lady noted that marijuana is easier to grow and process than tobacco-- a fact I knew from seeing the news about foreigners in Korea who stupidly attempt to grow their own weed. She also (1) told me I needed to get Mom enrolled quickly in various "Life with Cancer" programs, (2) gave me advice on where to find the best wigs and bandannas for Mom, and (3) told me something about her own cancer.

Though I was a bit turned off by how chatty the lady was, I also saw that she was a kind soul and very well-intended. With nothing to do other than wait for Mom, I sat and nodded politely as my interlocutor talked and talked. When Mom came out of therapy and we ambled off to the elevator, I turned and waved to the lady. She's in her final week of radiotherapy; I wish her well.


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birthday

Happy Birthday to Madame Landgrabe, my French teacher for two years in high school, and my semblable in terms of worldview. Thank you for always believing in me.


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bustle

We're going back to radiotherapy today for the second time. As happened yesterday, we'll be leaving at 1PM.

Some of the gents from church who will be working on the wheelchair ramp tomorrow are supposed to stop by today and drop off building materials. I'm not sure when this is happening, but it might occur while we're out of the house.

Later this afternoon, a member of the Congregational Care Council will be dropping off food (cf. last Friday), so I won't have to worry about cooking dinner. Again, our sincere thanks to the church for this show of support.

The builders coming tomorrow should know that we're planning on grilling lunch and dinner for them, so they needn't worry about hunting around for food during their breaks. Thanks in advance for that ramp!


UPDATE, 11:55AM: Thanks, Pastor Jeri, for contacting Mr. Frady. He called me and we've worked out a rough schedule for today. Dad's planning to stay home while take Mom to therapy, so Mr. Frady and Co. can drop off building supplies with no worries. Someone will be home to meet him.


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back already!

The lady who led Mom to her radiotherapy treatment told us that Mom wouldn't be getting a new mask made. Sure enough, Mom popped back out of the treatment room almost as soon as she had gone in. I barely had time to read a few poems out of a Shel Silverstein collection (A Light in the Attic). Dr. Tonnesen also came out, and he barely had time to speak with Dad and me about Mom. He expressed pleasure at Mom's progress, noting that Mom's renewed interest in making herself up bodes well. (Actually, Mom has been self-conscious about her looks this entire time, even when her mind was foggier, but it's only been over the past week or so that she has actively tried to make herself up on a routine basis.)

Mom had no real complaints about the experience this time, so I imagine that there were no problems during the treatment.

And now we're home, finishing up a very late lunch. The back yard has been mowed, and I'll be spending the next little while planning lunch and dinner for Saturday. I understand that five guys from church will be coming over on Saturday at 9AM, and they plan to make the ramp in a single day, assuming there's no problem with the weather. I'm therefore planning to make lunch and a probable dinner for everyone.

And that's where things are at the moment. Mom's watching her Korean channel, I'm typing away, and Dad's running some errands.


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mowin' and goin'

I'll be mowing the lawn from 10:30 to about 12:30. We'll be leaving home around 1PM or 1:20PM at the very latest so as to have Mom at the hospital in time for her 2PM appointment. She might be getting a new radiotherapy mask today. The last mask was made back when her skull was a full dome. Because the shape of her head has changed, a new mask might be necessary. Today's procedure might therefore take longer than a normal radiotherapy procedure.


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thwarted

We were supposed to take Mom over for her first radiotherapy session at 2PM today, but Mom, who had wanted to shower, chose to perform her ablutions far too late in the game: 12:30. Because Mom moves at an understandably glacial pace, a shower is a large and involved project for her. We had intended to leave at 1PM for the hospital (squeezing in a quick lunch before setting off), but Mom wasn't finished showering by then.

Dad also blames himself for having abetted Mom in her poorly-timed endeavor. He's been letting Mom sleep in on the assumption that the extra time in bed is allowing her to heal. I think Dad has a point, but Mom's need for sleep must also be balanced with her need for both increased physical activity and adherence to a proper circadian rhythm.

Mom is generally off to bed around 11PM and has, for the past little while, been waking up in the very late morning-- usually after 10AM. That's about 11 hours of sleep per day, not including long afternoon naps. We need to be more assertive in making sure that Mom gets up and takes care of herself in a timely manner, moving along from point to point on her daily schedule without slacking. When life slides too far out of rhythm, the body is affected. That, I think, is the flip-side of Dad's concern for Mom's need to sleep. Sleep shouldn't dominate her schedule, just as it shouldn't dominate the schedules of healthy people.

Assertiveness in dealing with Mom is becoming more important as Mom regains a measure of will. The problem is that, given the damage to her frontal lobe, she is experiencing no corresponding return of her logical faculties. This means we may have to treat Mom like a child, occasionally blocking her desire to fixate on this or that item, or to remain in one place for an over-long period. We-- Dad and I-- need to do a better job of viewing Mom's radiotherapy appointments as sacrosanct, which is what they are. For my part, I sleep only 6-7 hours a night, but I may have to wake up much earlier to provide an example for Mom. (As a night owl, the thought of waking up early pains me.)

So while we might, in some measure, fault Mom's slowpoke ways for today's missed appointment, the primary responsibility falls on Dad's and my shoulders. We need to be ready to push Mom, and if she becomes crabby in the process, well, that shouldn't deter Dad and me from doing whatever needs to be done to get Mom to her appointments on time.


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thanks again

Once again, many thanks to Dale Molina for making the long trip all the way from Gettysburg, Pennsylvania to visit Mom. Thanks as well to Rhee Burke for coming directly over from work to see Mom. She appreciated both visits, as did the rest of the family.


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chicken scrawl no more

I tried a writing test with Mom today, asking her whether she could spell out the word ajumma (aunt) in hangeul, and whether she could write her own name in both hangeul and Chinese. She did all this, and more: not content simply to write ajumma (Dad keeps mispronouncing it as ajima), she also wrote ajeoshi (uncle), halmeoni (grandmother), and halabeoji (grandfather). Most striking was that her script looked almost as it did before April 16-- clear, neat, and lucid. This improvement matches the improvement we've seen in Mom's ability to recall people and events, though she can still be shaky about such matters as her previous meal. Mom's nowhere near full speed in terms of conversation, but she's making a real effort at listening, and does interact in slightly more than rudimentary ways, sometimes even offering a concise opinion when called upon to do so.

We need to enjoy this while it lasts. I don't mean that in a sad or cynical way: we often forget that every moment needs to be enjoyed while it lasts, cancer or no cancer.


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visiteurs

Mom's got quite a few people to see today. Our family friend Dale Molina arrived at 11AM and has been regaling us with tales of her life in the Civil War town of Gettysburg, Pennsylvania. Sometime in the next hour or so, a home care nurse will be stopping by. Later today, at 5PM, Mom will be visited by a Korean friend, Rhee Burke. I expect Mom to be quite tired by the end of the day.

Saturday, a team of folks from church will be over at the house, constructing the wheelchair ramp. Assuming it doesn't rain too much (Weather.com is predicting "isolated" and "scattered" thunderstorms for the weekend), I hope to do a bit of grilling. Nothing fancy-- probably just burgers and dogs, along with soda, chips, and some healthier options.


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bone flap and other matters

The news I got from Dad just a few minutes ago is that Mom's synthetic bone flap won't be put back in until two weeks after the end of radiotherapy. I'm relieved: I had worried that the docs might want to do some something crazy, like installing the flap during the six-week radiotherapy period, when Mom's ability to heal will be diminished.

Some other doctors have chimed in about Mom's situation:

Dr. Yoho (infectious disease specialist): Hold the Temodar treatment until after Mom finishes the daptomycin regimen.

Dr. Mirali (plastic surgeon): Mom's ready for what's to come.

Dr. Meister (medical oncologist): As Dr. Yoho said-- hold the Temodar.

Dr. Leiphart (neurosurgeon): As noted in the first paragraph above, the bone flap won't be put in until two weeks after the end of radiotherapy.

Dr. Tonnesen (radiation oncologist): Will call back (later today?) with the new radiotherapy schedule. Mom might restart as early as tomorrow.


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nope

No radiotherapy for Mom today. Instead, we ended up sitting and talking with Mom's radiation oncologist, Dr. Tonnesen, about the need for him to coordinate with the other docs in order to reestablish a treatment calendar and begin treatment. I was a bit taken aback, as I had thought-- erroneously, as it turned out-- that the docs had already planned this out, and that today marked Mom's return to the treatment that had been interrupted by her severe MRSA infection.

Dad mentioned to Dr. Tonnesen that he'd been having trouble contacting Drs. Meister (medical oncology, Temodar treatment) and Leiphart (neurosurgery). Dad had tried to get in touch with Dr. Meister over the past week, and had tried to get hold of Dr. Leiphart over the past two weeks. Dr. Tonnesen apologized to Dad for what must have seemed like "being abandoned by the system." I saw the apology as good customer service: mollify your customer. I didn't, however, see it as a promise that things would be better from now on. Few large bureaucracies improve that quickly.

Dr. Tonnesen also said that the chemo- and radiotherapy didn't have to be in total lockstep, which is a significant departure from what we had heard before: in all previous talks about the two therapies, we had never heard that a variation of more than two days was permissible. Today, however, the doc said that one treatment could be delayed for as long as a full week after the other treatment had begun.

It's hard to know how exact a science all of this is. While I sense a general overlap between and among different doctors' opinions on GBM treatment, things almost always get fuzzy when it comes to the specifics. Part of this may be because each individual is different, making it difficult to predict how any given course of treatment will end up. The fuzziness might also be attributable to the natures of the many types of cancer out there, and the fact that even a specific subspecies of cancer will vary according to the individual, as NCI's Dr. Fine had said regarding gliomas.

The end result of all this uncertainty, alas, is a sense that all of us, even the scientists, are fumbling around in the dark when it comes to certain kinds of cancer. "I wish I had a magic wand that could heal your wife," Dr. Tonnesen told Dad today. "Chemotherapy and radiation destroy fast-growing cells, but they don't heal. What we need is a healing wand."

I keep hoping for some sort of nanotherapy to appear-- some lotion containing nanorobots that slip through the skin's pores, then swarm toward a given cancer and kill it, perhaps releasing healing enzymes along the way. But such a solution isn't going to happen in Mom's lifetime, which is, to put it politely, a real shame.

Anyway, the upshot of the visit with Dr. Tonnesen is that we have to wait for some calls to be made, for the docs to confer with each other (since they haven't done so yet, despite all the time that's passed since the MRSA issue began), and for a new treatment calendar to be laid out. Once the docs settle on the new calendar, I assume our family will receive a call informing us of when the first day of resumed treatment will be. So for now, Mom will stay on her daptomycin regimen, which finishes out at the end of July.

More news as we get it.


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resumption

Mom's in-tandem chemo- and radiotherapy treatments resume today. The chemo can be done at home, as it's Temodar administered in pill form. The radiation requires a trip to Fairfax Hospital; today's session is at 2:20PM, if I'm not mistaken.

Mom might have to have a new radiotherapy mask made; if this turns out to be the case, we're hoping that she won't suffer the same discomfort that preceded her second, third, and fourth operations. Her head wounds all appear uninfected this time around, so she ought to be fine. Last time, the tightness of the mask was an issue, perhaps because she was already infected. It may also have been the case that the mask irritated Mom's head wound, leading to the serious infection.

I wonder: if they use the same mask today, will we have to warn the docs to make sure it's been sterilized? Well, I imagine we'll warn them whether we have to or not.


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thanks and apologies

My thanks and apologies to the Baumanns, who kindly dropped off a great quantity of Korean food (which I have sampled-- it's excellent!) today. Mom was asleep when the Baumanns arrived, but she'll appreciate the fantastic dinner ahead of her. Everything looks, smells and tastes wonderful. It's too bad Mom wasn't awake to greet her visitors, but there will be other opportunities, I'm sure.

Thanks, once again, to Melinda Mason and to Cheong Burns for their delicious food. As Melinda predicted, Dad was a fan of the chicken.


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tacos

Today, I'm hoping to prep one of the easiest meals in my ever-increasing repertoire: tacos. I've done tacos since forever, and I make them Amurrican-style, i.e., as a bastardized version of Tex-Mex. Today, I'll be cheating and using pre-made taco seasoning; in Korea, I always made my own seasoning.

I'm hoping my brother David can make it here for dinner; Dad knows how much David enjoys tacos, so this meal is primarily for my brother.


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how the Fourth went

I wish I could say more about how well Mom did during her time at Cove Point (Lusby, Maryland), but in truth, I spent most of my time as far away from the party as possible.

The long-time friend who invited Mom to the beach house party, whom we've known since my childhood as "Miss Lee ajumma," had invited several guests, starting with her three daughters. Two of them are married; one of the two has a cute little son who is just starting to toddle around. The youngest daughter has a significant other; all the relevant men were in attendance, along with the second daughter's aforementioned son, Ziggy. Ajumma had invited two other Korean ladies (friends? relatives?), as well as a neighbor from northern Virginia. With my parents and me there as well (Sean arrived later in the day, driving separately), it was quite literally a full house.

Mom seemed to be in good hands with Dad and the other guests. Almost as soon as I had arrived, Ajumma's eldest daughter told me about a lighthouse located a short walk away; I immediately set out for it, and ended up spending a few hours seated on crumbled seashells, staring out at the horizon and acquiring a lovely sunburn-- one the likes of which I hadn't had since stopping the walk.

Why the antisocial behavior? Well, I've never been one for parties, and I was feeling even less celebratory yesterday, given current family circumstances. I don't begrudge anyone else their merrymaking, but it just wasn't for me. Also, as an introvert, I've never relished the thought of going somewhere to meet a group of largely unfamiliar people. Even Ajumma and her family, despite being longtime friends, are at best a peripheral part of my life: over the past few decades, I've seen them only once every few years. As far as I was concerned, my main purpose was to drive the parents to the party and back home. If I'd had my druthers, I'd have been home alone, clearing my head, not traveling and attempting to look happy for others' benefit.

So sitting at the beach for a few hours (we arrived a bit after 2PM; I didn't make my way back to the beach house until after 6) was my compromise, my way of satisfying my own needs and of not stepping on other people's toes. I was the designated chauffeur and I didn't want to be a party pooper for the other guests, but at the same time, I've never enjoyed small talk and simply wasn't in the mood for interaction. Quietly separating myself from the proceedings seemed to be the best choice, which is what brought me to the very tip of Cove Point.

Had I been more of a beachgoer, I would have realized that even sitting by oneself on a patch of sand is no guarantee of solitude. In Korea, such a strategy might work, because most Koreans will leave strangers alone (unless they're looking for a free English conversation session), but in America, strangers often say "hi" out of the blue. I ended up meeting eight dogs and their various owners. One gent, Eric, stood and talked with me about various topics, including religion, for a while. Eric is retired from the US Air Force and now lives in the Cove Point/Lusby area with his wife, working as a contractor for the Navy. He told me that he was "on a quest" of sorts, having been raised Catholic but having dropped out of the fold.

I mentioned my background in religious studies, and my specific interest in Buddhism and issues related to religious diversity. "Do you think the Buddhists are on to something?" Eric asked. I told him that there was a lot in Buddhism that I found both interesting and enriching. Eric told me about his own research into the life and thought of Gandhi, whom he saw as a good example for us to follow. "Religion is about living life for others," Eric said.

While we were conversing, Eric suddenly stopped in mid-thought and exclaimed, "Hey-- a shark tooth!" He reached down, grabbed the tooth, and handed it to me. "It's a fossil, probably millions of years old," he noted. Then he added: "If you believe that sort of thing." It turns out that Eric has Christian friends who are young-earth creationists, i.e., they probably believe the earth was created in 4004 BC and that dinosaurs were destroyed in the Deluge. I consider this garbage, and told Eric I had no trouble with the existence of fossils dating back millions of years. Eric seemed reassured that he was talking to someone rational.

Eric's dogs, a beautiful black border collie named Sam and a 15-year-old cocker spaniel named Abby, were the first to greet me. Sam got to me first, sniffing me out as I sat cross-legged while facing the water. Abby ambled up soon after. Later on, a dog named Baxter bounded over to me. Baxter was a jowly boxer who lunged for my plastic water bottle and began to chew it into a mangled mess, covering me with drool as I played fetch with him. Baxter wasn't Eric's dog, but Eric and his dogs knew Baxter well. The boxer's family showed up a few minutes later, and we talked briefly.

Sean arrived around 4PM, ate a mess of kalbi (marinated Korean short ribs), then wandered along the beach to where I was. He and I retreated to the sea wall close to the Cove Point lighthouse. While we talked, yet another dog-walking family came our way-- this time with five dogs. One of the most fascinating dogs turned out to be a cross between a basset hound and a Labrador-- a "bassador," according to the mom in the group. When I first saw the long-bodied, stubby-legged, large-headed dog, my first thought was that it looked like a giant dachshund, or a dachshund that had been crossed with a Corgi. It was a bizarre sight, but the dog moved with the the un-self-conscious nonchalance of a being that doesn't know it's the product of two very different worlds.

Sean wandered back to the beach house, leaving me alone with my thoughts. As the afternoon crept onward, I began to realize that the number of biting flies was on the increase, so I eventually started back toward the beach house, too. I met some partiers along the way, including Dad, who turned around and walked back to the house with me.

By the time I returned to the festivities, it was about 6:15, and I hadn't eaten. I sat in the house's porch, staring out at the water and the bayside flâneurs. Sean settled into the chair next to mine; we talked a bit, and then the porch began to fill with all the guests I hadn't spoken with. They all turned out to be great people; I regret not having been more talkative, but they seemed fine with my initial taciturnity. I generally talked when I was asked direct questions about my experiences living in Korea and walking in the Pacific Northwest, but by the time I had become a bit more animated, it was time for us to leave (Sean had left earlier to meet up with another group of friends). In the meantime, I learned a bit about my interlocutors, and a good bit about what life is like in Charlottesville, Virginia, a town I've enjoyed visiting, but which I barely know at all. I also found out that the fossilized shark tooth I'd received from Eric was a dime a dozen: there was an eroding cliff face down the coast that was releasing shark's teeth into the water; they were regularly washing up on the shore, and people picked them up all the time. So much for my diabolical plan to sell the tooth on eBay for $5000.

Dad did Mom's PICC line antibiotic treatment promptly at 8PM; he's been great about doing that, and about taking care of Mom's dressings. According to Sean, Mom had spent time both on the beach house's living room couch and at table, listening to the conversation happening around her. Mom looked happy when I saw her, a huge plate of fruit in front of her. I never did eat any kalbi, but did grab some kimbap and a few cherries. It a shame I didn't take advantage of the hostess's largesse: I'd heard that she'd bought thirty pounds of kalbi, which meant well more than two pounds of meat per person.

Around 8:25, we said our final goodbyes to the younger generation and started for home. Ajumma and the other ajummas had left earlier.

As we drove home, Dad turned to Mom and asked her if she'd had a good time. Mom nodded, tired but happy. My own mood throughout the day mattered little; the important thing was that Mom had had fun. From what I saw of her, she seemed thrilled to be in that animated, multigenerational swirl of family and friends.


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