Saturday, August 1, 2009

leading Mom to her bed

I sat with Mom for a while this evening, watching some Korean programs with her. Mom no longer truly understands what she's seeing, but she responds to the emotional tenor of the images flashing across the screen. If something startling occurs, Mom jumps. If a cute kid appears on screen, Mom might go, "Aww." Sometimes, it seems that she does pick up certain recurrent aspects of a storyline. For example, if I were to ask her why a certain man and woman in a soap opera are having an argument, Mom might say, "He's cheating on her." She would know this because the subject of cheating probably came up repeatedly whenever the couple argued. So occasionally, it seems that Mom understands, on some level, what she's watching.

But for the most part, Mom wouldn't be able to tell anyone what a story was about-- not in any detail. She barely speaks in full sentences as it is. Were I to ask her to relate something that just happened on TV, she wouldn't be able to, not merely because of her problem speaking, but because she often can't remember. I saw this earlier this evening. Dad asked Mom where I had driven her, and she told us both that she couldn't recall her outing with me. That didn't faze me; I had half-expected her to make such a reply. Even during our outing, she couldn't remember that David and Sean had attended Woodley Hills Elementary School.

But tonight, when Mom had finished watching her usual shows, I turned off the TV and asked her, "So! Are you ready to go?"

Mom nodded, then looked at me and asked in a child's voice, "Where are we going?"

I almost cried then. I managed to stand in front of Mom, take her hands, and count out our usual, "One... two... three!"-- that's what we do when asking her to stand up-- without allowing my voice to tremble. I gave Mom my usual hug, holding her in that embrace a few seconds longer than normal. She hugged me back, one frail, tiny hand patting my massive ribcage. As sometimes happens, I found myself wondering who was comforting whom.

And then I led her to her bedroom, to sleep.

Another day with Mom that I won't get back.


Dad's circuit

Dad spent almost four hours driving around northern Virginia today, giving back the food containers from the people who have given us food. Today's circuit, five or six stops in all, took Dad all the way down to around Woodbridge, and way up close to DC. As always, our thanks to all the good folks who have left us something to eat.


touring and walking

I took Mom for a spin, visiting a local park and several local schools, all of which seem empty thanks to summer vacation. What's notable today is that I asked Mom whether she felt that we could do this without the wheelchair, and she said yes. So we walked carefully out to the car, Mom and I, braving the nasty heat and humidity, getting into the car, then rolling down the windows and cranking up the air conditioner to blow out all that hot air. We drove for a while with the windows down until Mom decided that her side was too windy. She closed her window, and out of solidarity, I closed mine.

Our drive took us past Woodley Hills, the local elementary school my brothers attended (I went to Mount Vernon Woods Elementary, across Route 1). I asked Mom whether she remembered which of us attended Woodley Hills; either she didn't remember, or she wasn't inclined to answer. I took us slowly through the school's front parking lot, giving Mom a chance to take the school in. Then we sped up and drove past Mount Vernon, the estate of George Washington, and the spot where the George Washington Parkway begins.

Readers who have been reading this blog since last year know that Fort Hunt Park lies at about Mile 2.75 along the parkway. I drove us to the park, and we cruised slowly around the mile-long circle drive that encompasses most of the park. I had thought about getting Mom out of the car and letting her walk around there a bit, but decided against it. The park was crowded, and I had wanted Mom to enjoy a bit of shade and silence.

We drove back toward home, but took a detour and swung by my old alma mater, Mount Vernon High School. Our loop around the school's exterior proved unenlightening; the school looks pretty much the same as it did when I was a student there from 1983 to 1987. One of these days, I might take a stroll through the school's hallowed halls. A while ago, I was told that MVHS now has the worst discipline problems in Fairfax County in terms of the number/frequency of suspensions. That's pretty sad. I could rant at length about American education and what needs to be done, but this blog is no longer the place for that.

We wended our way back home. Instead of taking Mom straight inside, I decided to walk her around the back yard. For the most part, I allowed her to stop wherever she wanted, but eventually it became obvious that Mom would, if left to her devices, stop every few paces and fondle the petals of this or that flower. She plucked two sets of blooms off one of our bushes, and I gently pulled her away from the bush. The point was to get Mom moving again, not to allow her to stand in one place for a long time. With Mom up and about thanks to the Decadron, she needs to exercise as much as possible.

The walk back up the deck and to our back door went fairly well, but it was obvious that Mom's legs would have been too weak to use the deck stairs. Instead, we went up the wheelchair ramp, which meant mounting only two steps, followed by an incline. I brought Mom in, got her to exchange her shoes for her slippers (thanks again, Mrs. Kopf), and managed to get her seated in her usual spot in the living room. I took Mom's flowers and placed them in a tiny, elegant vase given to us by my former French teacher, Mrs. Landgrabe; the flowers fit perfectly, and the vase now sits at our living room's bay window.

We've been wanting to get Mom to move around more, and today was the first day of real movement for her ever since she restarted the Decadron. We hope we'll be able to do this again with increasing frequency.

Today's outing began with me helping Mom up off the couch. Every time my mother succeeds at standing up, I give her a big hug. Her answering smile suggests amusement, as if she were aware that I was being patronizing, congratulating her for doing something that's ordinary for most people. But that's what I live for: my mother's smile. I'll take as many of those as I can get.


walking better, and a discussion about the future

Mom's balance and gait have improved, and she talked with me a tiny bit when I first saw her today. She even went over to the kitchen and tried washing some dishes. We sat her down for lunch, and she went at it slowly but steadily.

I guess this is what we can expect from here on in: a downward-trending but sinusoidal pattern that indicates a slow overall decline marked by moments of improvement. The Decadron has been helping with Mom's new edemas. How long it will help, and exactly how much the tumor has progressed in other parts of her brain, is something we'll have to talk with the doctors about this coming week.

As mentioned a long while back, we want to get Mom back over to MD Anderson in Houston, and also to the National Cancer Center in Bethesda, Maryland again. The goal will be to see who has what to offer in terms of second-line therapies. This sort of long-distance travel can't happen until after Mom's bone flap has been put back in-- a procedure that is itself contingent on Mom's having finished her initial in-tandem radio- and chemotherapy (it is, finally, truly in tandem, and has been for a few days). So the future looks a bit like this:

1. Mom finishes her radio- and chemotherapy, then begins to enjoy a four-week break.

2. Mom gets her synthetic bone flap put in, probably during the break from therapy. This period will be dangerous: re-incising her scalp reintroduces the original risk of MRSA flareup.

3. Mom, Dad, and I fly down to Texas to visit MD Anderson and stay with relatives there. Hopefully, this is will happen during Mom's four-week break, but this depends on how Mom heals from her bone-emplacement surgery. Mom might still be able to travel even after her break is done, because the second phase of standard treatment is chemo-only: she can take her Temodar no matter where she is.

4. Depending on what MD Anderson has to offer Mom in terms of second-line therapy, Mom and Dad might remain in Texas for quite a while. If MD Anderson actually has something to offer in terms of innovative treatments and/or clinical trials-- then Mom will remain in Texas while this treatment occurs. Dad and my relatives will provide Mom 24/7 home care, just as Dad and I are doing here, with help from my brothers when they can make it over. If not, if the docs at MD Anderson feel they have nothing more to offer Mom, then Mom will come back up and stay with Fairfax Hospital. The National Cancer Center will remain in the loop since Mom signed a consent form to be part of their ongoing GBM research.

5. I've already made it clear to my relatives that Mom will spend her final days in Virginia. This is where her life is; it's where all her friends are, and it's where her immediate family is: her husband, her sons. If Mom declines rapidly while in Texas, we'll talk with the docs about our wishes and have her brought back up to her home to allow her story to end in northern Virginia. As painful as it is to do this, we have to think about the inevitable future.

6. No matter when we do finally get down to Texas (hopefully late September, but possibly later), I personally won't be there that long. The house in Alexandria can't be abandoned, and I can't ask my brothers to house-sit for an indefinite period: they both work all week long and have their own places to take care of. Both are usually dead tired when they visit home. Expecting them to take over chores like lawn care and other forms of maintenance, along with handling the bills that will be arriving, is too much. I'm the one with all the free time. Dad, meanwhile, needs to stay with Mom: he's the one who knows the most about how to care for Mom's bodily needs, and he can help my relatives understand their part in how to care for her.

So I'll come back from Texas after about a week and will manage the homestead alone, talking with Dad via Skype or cell phone or email whenever bills arrive, or whenever we need to deal with medical paperwork. There are household projects that need doing, and I might be able to get them done during this time. I'll also have to find work, and since Mom will be down in Texas, I won't be limited to working from home. If, however, it turns out that Mom will be coming back from Texas in a matter of weeks, then I might just bite the bullet and take up private tutoring.

As you see, there's always a lot to think about, and this includes thinking ahead. Meanwhile, we can enjoy the fact that Mom's balance and ability to walk seem to have improved for now. I'm taking her out for a spin at 4PM; we'll visit a local park, and I might even get Mom to walk around a few minutes before we retreat to the air conditioned comfort of the car. It's hot today. Hot and humid-- my least favorite weather.


Mom's latest MRI

Not long ago, Mom had her most recent MRI. Here's the last part of what the report said:

IMPRESSION: Improvement in the appearance of the tumor within the left frontal lobe with progression of tumor and edema in the right frontal lobe when compared to a previous study from Fairfax Hospital dated 6/3/2009.

This was dated 7/21/2009. I suppose it should be no surprise to learn the tumor's on the move, but it's still hard to read this. It certainly helps explain Mom's behavior: she's suffering from an edema, like before, but in new parts of her brain.


Friday, July 31, 2009

done for now

No more home care nurse. Dad made the call to Inova Home Health Services; the home care nurse won't be coming back. There's no reason for her to be here anymore: she had come primarily to redo the dressing that covered Mom's PICC line, but Mom no longer has a PICC line. She was also supposed to do blood draws for blood work, but that can be done right at the hospital, and Dad has arranged for Mom to slip over to the proper clinic every Tuesday. This cuts out the middle man, too: one of the things I haven't blogged about has been our frustration with Inova HHS's inefficiency at getting the blood work data to the proper offices. Now, the hospital will have the data directly, since Mom's blood work will be done on the premises.

It's strange not to worry about the PICC line. In place of all that, we now have to keep track of Mom's Temodar (chemotherapy in pill form), her Bactrim (to guard against pneumonia), and her Decadron (steroid to reduce any swelling of brain tissue). Dad keeps detailed notes on all this, and gives Mom her medicine in a timely manner.

This is what care means. It's the everyday rituals, the mundane gestures, the constant, moment-to-moment attention. Care isn't just emotion-- all the useless weeping and wailing that come from not understanding and accepting a situation. To steal a thought from Dr. M. Scott Peck, care is action. It's what we do, not merely what we say or think. Talk is cheap, and emotions come and go. Steady action, steady presence-- these are the marks of true care.


a pleasant visit

Mom received a visit from an NALC coworker today-- Mrs. Lim, who came over with her husband and daughter-in-law. It was, I think, a great occasion for Mom: our guests turned out to be wonderful people who had many questions about Mom's condition and who, through their presence, made Mom's day brighter. Mom was somewhat more verbal today, especially when our guests first arrived, but later she sat back and simply basked in the conversation, her fidgety hands going after the plated grapes and apple slices, rearranging them in new patterns. I'd like to think that she was trying to listen, even if she wasn't actively participating in conversation. Mrs. Lim held Mom's hand, and from what I've seen, that's the best sort of therapy for Mom.

Many thanks to Mrs. Lim's daughter-in-law, Lydia, who acted as the interpreter today. It's a good thing she was there; my poor Korean wouldn't have been sufficient for the task. My respect also goes out to Mrs. Lim's husband, with whom I spoke about the house's renovation. We made the acquaintance of a good family today. It's nice to know that they, along with all the other good people Mom knows and loves, are part of Mom's circle of care.


progress and a thank-you

The Decadron is definitely helping: Mom's gait is steadier, her balance is much better than it was yesterday, and she's decidedly more reactive.

Also: many thanks to Mrs. Farwell for dropping off a beautiful load of Korean food for us and Mom.


slight improvement, indeed

Mom's walking better and is somewhat verbal today. The Decadron is working as advertised. What this might mean, though, is disturbing: Mom was verbal before going back on Decadron; she then worsened, and now she's improved thanks to the Decadron. In other words, the Decadron doesn't help us understand why Mom experienced the dip in the first place.

We'll be talking with doctors about this, but now, we have to get Mom over to her therapy. Today is Session 19 out of about 33. A few more weeks of this to go, then we can worry about getting Mom's synthetic bone flap put in.


Thursday, July 30, 2009

slight improvement?

Mom's had two doses of the Decadron she'd been prescribed, and by this evening, she had managed to utter a few weak phrases. It's not enough to say she's truly improving, but the steroid might be helping.

Dad had to go out and get another prescription med called Bactrim, which is to counter the possibility of pneumonia. Remember that Mom is once again vulnerable to infection: she's back on Temodar, which affects blood count, and is back on Decadron, which is what exacerbated her original problem with MRSA. Now is the time to tread lightly, to watch Mom's hygiene as well as possible, and to make sure she gets through these final few weeks without even a hint of infection.


PICC line, steroids, and Temodar

Dr. Meister-- for whom we waited over an hour-- recommended that Mom not get a new PICC line installed because of the risk of infection. This wasn't an issue before because Mom had been receiving daptomycin through the PICC: the antibiotic had been keeping the line infection-free. Otherwise, the doc felt that Mom's blood work looked good.

We did, however, find out that Mom has lost about 8 pounds since April. Dr. Meister wanted to consult with Dr. Tonnesen about changing Mom's Temodar dosage, given her weight loss, so this was a question we had to take up with Dr. Tonnesen. The hospital was our next stop, as Mom had a 2PM radiotherapy appointment.

We got to the hospital around 1:45; Mom was done with her treatment by 2:05, and we all found ourselves in our second exam room of the day. Dr. Tonnesen asked us how Mom was doing; we talked about her weakness and her nonverbal state, which has been worsening. Dr. Tonnesen told us that he had thought Mom was still taking Decadron (steroids), as this would have alleviated some of the cognitive/verbal issues. We reminded him that Mom was taken off the Decadron because of her infection, so the doc gave Dad a prescription to go get more Decadron.

As for the Temodar, we were told to expect a call from Dr. Meister later today. He'll tell us what the new dosage will be.


full day

We're leaving soon for Dr. Meister's office; the appointment's at 11:45, according to Dad. After that, we've got the regular 2PM radiotherapy appointment plus a sit-down with Dr. Tonnesen, and then later in the afternoon, around 4, a visit from Pastor Jeri.


Wednesday, July 29, 2009

Mom's mental and physical state

Mom is just as nonverbal today as she was yesterday, if not more so. She's also acting a lot more confused: she doesn't respond with the same instinctive accuracy she had shown up to now (for example, she doesn't immediately let go of a spoon when I ask her to, so I have to pry it gently out of her hand). Mom seems increasingly caught up in her own world; interacting with her requires us to be directly in front of her, dominating her field of view. She'll nod when asked certain questions, but will seem to ignore others. I doubt this is deliberate; it's merely a function of her condition. Whatever the reverse of aphasia is, that's what Mom seems to be manifesting. With aphasia, whatever's inside the mind has trouble getting out because the channels are scrambled along the way. Whatever Mom has now is the opposite: our attempts to give her commands often elicit incomprehension. Signals are being scrambled on their way in.

We're approaching a point where, sometime in the very near future, it will be necessary to feed Mom by hand. Her ability to feed herself is eroding; she gets stuck in a cognitive loop whenever she finishes a bowl of soup or dessert, endlessly scraping the bowl's bottom with her spoon for no reason other than to scrape away. She can also become distracted by what she sees on TV; when this happens, she'll stop eating and stare, transfixed, no longer conscious of her meal. It takes some prodding by us to get her to refocus on her food.

Mom is also much weaker on her feet, and her balance is in tatters. She can still walk, but to walk with Mom is to dance with her-- I hold her by both of her hands, walking backward while she shuffles timidly forward. She still has a sense of humor, because she'll move her arms along with me if I pretend to swing them as if we're dancing, sometimes even smiling while we dance.

But it's not all fun and games. Another reason why I hold both Mom's hands is that it allows me to control her repeated attempts to grab at small items on tables and countertops. She's still as fidgety and grabby as ever; having just taken her PICC line out a second time, she's shown us that this compulsion never left her. If anything, it's likely to worsen.

A lot of this might be attributable to the effects of the radiotherapy. Tonight, Mom will also be restarting her Temodar. Along with affecting her blood count and increasing the likelihood of reinfection, the Temodar may cause nausea, forcing Mom to eat even less than she already does. Mom's appetite is often fairly healthy, but over the past few days, she hasn't been eating nearly as much, a trend that's likely to continue if she does become nauseous. She sleeps a lot more; in fact, she's been napping for nearly half an hour (it's 4:58 as I type this; the blog entry's time stamp shows when I started typing this entry). Her siestas are lengthening.

We need to know what's going to happen with Mom's PICC line-- whether it'll be reinstalled, or whether she has scarred the veins in her other arm as well, thereby precluding further PICC line use. Since Dr. Meister's office is now in charge of this aspect of Mom's care, we'll know more tomorrow. Mom won't be getting a new PICC line today.


Mom's PICC line out AGAIN

It just never ends.

Dad told me that Mom pulled out her PICC line sometime in the early morning-- around 5AM. She rolled over in bed and tapped him on the shoulder; Dad "felt something plastic" in the dark, and knew right away that disaster had struck again. He has since been calling to schedule Mom for another short-stay clinic berth to get her PICC line reinstalled. The clinic has yet to respond with a firm schedule. Dad's hope is to get Mom into a berth after her radiotherapy is done; for the moment, he's not too worried about how she's doing, as she doesn't seem to be manifesting any problems, like hemorrhaging. Dad measured the PICC line, and its length matched the stats he had been given during our hospital visit last week: the entire PICC line had again come out. Nothing remained inside.

So the big question was obviously, How did Mom get through all that bandaging-- the bandaging she was supposed to have had ever since the first time she removed her PICC? Dad's answer shocked me: after that first night back home from the ER last week, he hasn't been bandaging her arm to cover the PICC. Instead, he's been covering the PICC with a thin elastic cuff, or some other such frail shield. "She was doing so well for six days," Dad said. I have no idea why Dad would assume that Mom's previous behavior would be a guide for her future behavior, given how often her state of mind has been changing. Dad also said he had tried reasoning with Mom: "You don't want to go back to the ER again, do you?" I shook my head in wonder: we've known for a long time that Mom is no longer capable of proper reasoning. She is, in many respects, like a forgetful, innocent toddler.

Keeping the PICC line out of Mom's reach is so absolutely fundamental that this incident blows my mind. It didn't have to occur; prevention required only a bit of vigilance and a proper understanding of Mom's mental state. Blithe assumptions that she's "doing so well" are completely unwarranted. From now on, I will be the one to make sure Mom's arm is properly secured every night. Shame on me for not checking this from day one.

UPDATE, 12:49PM: Dr. Meister's office, which has taken over responsibility for monitoring Mom's PICC line (Dr. Yoho, the infectious disease doc, was seeing Mom through her daptomycin regimen), doesn't think Mom needs to have her PICC put in today. We're meeting with him tomorrow, so we'll know more then.


Tuesday, July 28, 2009

less verbal

Mom barely talked at all today. Most of her communication was through her facial expressions and gestures-- nods, shakes of the head, etc. She also got the sniffles, which is always cause for caution.

Despite the ominous signs of a possible cold, today marked the end of Mom's antibiotic regimen. She's now officially off the daptomycin, but her PICC line will remain for the near future: the home care nurse still needs to draw blood samples, especially as Mom is about to restart her Temodar, a chemotherapy pill that will depress her immune system and once again make her vulnerable to infection. The docs hadn't wanted her on Temodar at the same time that she was on the dapto; they wanted her to be done fighting her MRSA before moving forward with the chemo.

So that's where we are now: about to take our first step into a very uncertain immediate future. Off the dapto, back on the chemo, and we'll see whether she's now strong enough to take the chemo without once again becoming infected. Mom has, unfortunately, proven very infection-prone, and her current self-sabotaging behavior hasn't helped matters (such as when she scraped her leg back open recently-- this after having tugged out her previous PICC line). In the midst of all these worries, her silence today seems almost like a minor matter, but in truth, we have no idea how significant it is.

Dad's got a medical checkup in the morning, then we've got Mom's radiotherapy in the afternoon. On Thursday, it's a full plate: a morning appointment with Dr. Meister, Mom's radiotherapy, another appointment with Dr. Tonnesen, then a visit from Pastor Jeri. On Friday, Mom's got radiotherapy as well a visit from a Korean friend from her old place of work (plus one or two other people?). It's going to be a busy rest-of-the-week.

ADDENDUM: I need to sneak in another note of thanks to the Criswells and to the Doe family for the food they gave us. I know I want the recipe for the rosemary chicken and potato dish, as well as for the addictive banana cream pie, and my brother David raved about the Tex-Mex "calupa" (that's how it was written on the packaging... not "chalupa"?) Thanks, as always, to all the good folks who bring us food, whether as part of the Friday Congregational Care Council's wonderful gesture to us, or as a friendly delivery any other day of the week.


reworking Mom's meals

As Mom's personal chef, I have to adapt to her changing state of mind. Lately, Mom has stopped eating the Korean way: instead of picking bits out of her side dishes and integrating them with bits of her main course, she's been attacking each individual dish or bowl one at a time, often lingering obsessively over a bowl after it's been emptied, using her chopsticks or her spoon to try to clean the bowl out as completely as possible. It's only when I take away the empty bowl (or dish) that Mom starts on her other dishes. She usually eats the main dish first, then tackles the side dishes (called ban-chan in Korean).

Korean side dishes are usually pickled, which means they're salty and strongly flavored. They're not meant to be eaten straight, a bowlful at a time. Instead, you're supposed to scoop up a small amount of the side dish, place it atop whatever qualifies as the main dish, and eat both together.

How, then, to solve Mom's problem? I see two possible solutions, a French one and a Korean one. The French solution would involve feeding Mom a full meal, one little course at a time. This might work best with Western food-- say, spaghetti and salad and garlic bread. It would still be a bit strange (most folks normally prefer their garlic bread alongside their spaghetti), but it would allow Mom to focus on one thing only while keeping the components of the meal separate. Since Mom sometimes mixes incongruous items together, this is a good approach to follow.

The Korean-style solution would be to use bibimbap (rice mixed with vegetables and red pepper sauce, often with a fried egg, and sometimes with some sort of meat or seafood) as a template for plating and service. Contrary to the French-style approach, I would take every component in the dinner and lump it all together in one plate or bowl, bibimbap-style. Again, Mom would have only one item on which to concentrate, but every component of the meal would be in front of her, for her to mix and match as she pleased. The obvious catch here is that all the components would have to be in harmony with each other: two incongruous items, if mixed, could produce some nasty, mutant flavors. But that's not usually a big problem with Korean food: the very nature of the side dishes ensures a general harmony.

So Mom might be in for a few changes in the meals to come. She's in a state where she rolls with the punches, eating pretty much whatever is placed in front of her, so I'm pretty sure she won't care about the upcoming paradigm shift.

Improvise, adapt, overcome. I love that motto.


off soon

The one bright spot this morning is that Mom got to see her new bathroom cabinet, which replaces the old hall closet. The cabinet finally arrived earlier today; it had been ordered before Mom's cancer made its appearance. At long last, the parents have a place to store their bathroom-related items. I think Mom's happy with what she'd bought.

We're off to radiotherapy now; will be back in a couple hours.


Monday, July 27, 2009

2 appointments?

We may or may not have two appointments tomorrow. The first appointment, at 10AM with a nurse practitioner at Dr. Meister's office, is likely to be cancelled; the second one is, of course, radiotherapy, which absolutely cannot be cancelled. The first appointment strikes us as redundant, which is why we're probably going to cancel it: on Thursday, we're scheduled to visit Dr. Meister at his other office to get essentially the same exams done and have the same questions answered.

Both of the morning appointments are about Mom's chemotherapy. As Dad and I were talking tonight, we realized that one question has been bothering us: we have no clear understanding of how effective the chemo is supposed to be. One doctor had told Dad that, for GBM patients like Mom, chemo is ineffective without radiation. This was the rationale behind not catching Mom up on the chemo she's already missed due to her infection: taking the pills before restarting the radiation would have yielded no results.

And this is where we're confused. If chemo without radiation is ineffective for people like Mom, then (1) why must she undergo radiotherapy 5 days a week, but take Temodar 7 days a week? And: (2) why will Mom be placed on a chemo-only regimen that will last several months after she's done with her four-week break from the in-tandem therapy? If chemo alone is ineffective, why bother with several months of chemo? The doctors' claims don't add up.

I imagine that there are ways to make all the information seem self-consistent. But part of me is wary about all this. How can I, a non-expert, distinguish between a valid explanation of the apparent inconsistencies in what we've been told about Temodar, and an ad hoc explanation that's little more than a tossed-off rationale meant to mollify the patient's worried relatives? Bleh... I won't dwell on this problem: it's the quick route to paranoia.

I'll be calling Dr. Meister's office in the morning to see whether we do indeed have to come in. If I don't get a clear answer from the office (Dad mentioned he had some difficulty with a secretary whose English wasn't particularly good), I'll cancel the appointment, and we'll see Dr. Meister anyway on Thursday morning. Why see him twice over the span of three days, and for no good reason?

There-- settled. Now I need to hit the hay.


meet the Criswells

We had a very nice sit-down with Reverend Bob Criswell, our church's previous pastor, and with his son Jim, the church's current music director. Jim brought over a truckload of his favorite dish, made by him and his lovely wife Anastasia-- rosemary chicken and potato, with Greek olive oil and garlic cooked to the point of sweetness. I think I'll need to ask Jim or his better half for the recipe.

Pastor Criswell looks great for a man who's gone through his own share of medical ordeals. I won't talk about them here, but suffice it to say that it was touching to see him hugging Mom: two people who know only too well what it means to be very, very sick. As with Mom, Pastor Criswell's woes began shortly after he retired.

Dad and I talked with the pastor and his son, with Mom largely spectating. While the conversation ranged around several topics, the one that occupied the most time was travel-- train travel, plane travel, Europe, America, Canada, Korea, Israel, etc. Pastor Criswell said he still wanted to meet with me to talk about my book (he's one of only a handful of people interested enough in the subject matter to want to talk about it). I don't know when I'll be able to make it up to New York, where he lives, but I look forward to the discussion.

We were all talking so happily that we forgot to give the Criswells our own gift: two of Dad's homemade rum cakes. Dad flew out the door after our guests had left and successfully delivered the cakes. Mom and I, meanwhile, dug in to the Criswells' lovely dinner, which truly was scrumptious. Many thanks to Jim and Anastasia for their kind efforts. Dad is already eying the Criswells' other gift: a huge container of banana pudding.


off in a second

We're about to leave for Mom's radiotherapy. Later this afternoon, we're to be visited by our church's former pastor, Bob Criswell, and his son Jim, who is still working with MVPC as its music director. I understand they'll be bringing yet more food... pretty soon, we're going to have to invite all these good folks to sit down and eat with us, just to keep our fridges from exploding!

PS: Many thanks to Mom's friend (sorry I forgot your last name), who came over with a huge container of kimchi at noon today. However, I need to remind folks once again to PLEASE CALL BEFORE COMING! Simply dropping by unannounced is not acceptable, given Mom's condition and our occasionally hectic existence.

I'm going to have to take the suggestion of a friend who told me that I should put up a sign in the front yard, along with a bold announcement in this blog's banner.


how she was before

With sincere thanks to Mr. Perry for providing this photo.


Sunday, July 26, 2009

laugh or cry?

"I don't know whether to laugh or cry" is a sentiment we voice when a situation seems outlandish, but poignantly so. Mom has me feeling this way nowadays, as her behavior slips into the ever more bizarre. We now have to watch her more closely at mealtimes: left to her own devices, Mom might do any of the following:

1. Tip the water from her glass into the bowl or plate holding her main course, resulting in a soggy or diluted mess.

2. Dip a napkin into her cup, then begin wiping her TV tray with it.

3. Put food into her mouth, chew it for a while, then forget that it's in her mouth.

4. Use her chopsticks to take food out of its proper bowl, place it onto a napkin, then attempt to roll the napkin up to do who-knows-what.

5. Take the remains of one drink and pour them into another, perfectly fresh drink.

All five of the above behaviors occurred at dinner today. Along with the above, Mom took the rotisserie chicken she'd been given, shredded it with her fingers, then separated the flesh into two neat, equally sized piles on her plate. After several minutes, I saw that she had eaten almost none of the chicken. And after she had had a chance to clean her greasy fingers with some sanitary wipes, she poured out a puddle of water onto her TV tray, then began using her sanitary wipe-- which was tiny-- to try to sop up the puddle.

Laugh or cry? Me, I sighed and cleaned up after Mom as best I could.

UPDATE, 10:20PM: Mom seems less fidgety now. She watched the latest episode of "The Next Food Network Star" with us, and now she's watching a Korean drama with Dad. Because Mom's on the Korean channel (MBC America) all day, I'm learning more about these dramas than I ever wanted to. Blech.



Many thanks to Mrs. Kopf and Mr. Perry for visiting us today, and for bringing over food for Mom and the rest of us.

Thanks as well to Mrs. Daw for dropping by with a pie and cans of shik-hyae.

Just a respectful reminder to any potential visitors: please call at least 24 hours in advance before dropping by. Suddenly dropping by can be a problem-- we might have other visitors, or Mom might not be in any condition to see people, or Mom might become stressed by the sudden appearance of a visitor. As Mom's guardians, Dad and I are responsible for reminding people about this rule. Please respect it. I've mentioned it on the blog several times, now, and am thinking about making that message a part of the blog's banner, because too many people still ignore it.


salut aux Normands!

Je vois sur mon SiteMeter que je reçois parfois des visites de quelqu'un en Normandie (Moulineaux, Haute Normandie). Mon "frère français" Dominique m'a rappelé qu'il a de la famille là-bas, mais j'oublie qui c'est. Merci pour les visites, mais... qui êtes-vous? (Laissez un commentaire en cliquant le lien ci-dessous, svp!)



Mom's awake. She's apparently scratched her leg back open. The way Dad put it was: "She just set herself back a week in terms of healing." Self-sabotage seems to be a recurrent trope. Oy gevalt.

UPDATE: It occurred to me that the above paragraph might cause some people to wonder whether Mom's going back to the ER. No, she isn't. It's not as though she'd scratched her leg to ribbons; she simply scratched open a few itchy spots around the harvest site on the back of her left thigh. Dad has bandaged the area heavily to prevent further scratching.


a note to the Mad Googler:
stop typing ""!!

An idée fixe is a thought that gets so stuck in your head that, even if you know you shouldn't be thinking it and/or acting on it, you keep coming back to it, anyway. It's a fixed idea.

Someone who visits this blog is suffering from an idée fixe: he or she keeps typing "" into the Google search window (I can see this activity on my SiteMeter), and they really need to wake up and realize that the domain name isn't "" but "" Why is this important? Because that person might decide to send the wrong URL to a friend who wants to visit this blog, and when they do, they'll discover that "" doesn't exist.

If this mad Googler is indeed under the thrall of an idée fixe, as I suspect s/he is, I doubt that this very public reminder will help shake them of the problem. Having labored under many fixed ideas myself, I know how easy it is to make the same mistake repeatedly, all while knowing that I should have learned from the previous twenty mistakes.

The mad Googler's repeated Googling of my site leads me to believe that they don't know how to "bookmark" a link on their Web browser, which further indicates that they may not be all that familiar with how to surf online. Dear Mad Googler: your homework is to ask your kids, or your grandkids, or your students, or some random youngster how to bookmark websites that you repeatedly visit. Instead of having to search for the website through Google every single time, clicking the bookmark is a much, much easier way of returning to the site.

Of course, if you're visiting the site this often, mightn't it be even better to try memorizing the URL? After all, how hard can that be, if you're motivated to come here often? And once the URL has been properly typed, most modern browsers will remember the visit as part of one's browsing history, which means you'll only have to type part of the URL the next time you want to visit. (Or, as mentioned, you can just click your bookmark.)

"Kevin's Walk at BlogSpot dot com." See? Not hard. For navigation purposes, "Kevin's Walk" is written without capitals, spaces, or punctuation: kevinswalk. "BlogSpot" should be easy to remember, too: it's the spot where the blogs are.

Hey, I'm just tryin' to help.

At a guess, the Mad Googler is an older person. I know this person uses Cox as their ISP, and is based in Virginia. Their operating system is Microsoft WinNT, and their browser is Internet Explorer 7.* They might even be someone I personally know. Hello, you.

I'd love to write a long essay about the American psyche and its uncomfortable relationship with new technology (quite different from South Korea, where 90-year-old grandmothers can be seen frantically texting people on their cell phones), but I'll save that rant for another day.

*Yes, all these data are public. And yes, the word "data" is plural; the singular is "datum." The same goes for "media," whose singular form is "medium." Some might counterargue that "common usage" indicates that "data" and "media" can be used in the singular. That's a good, respectable argument-- one I've made in the past about other turns of phrase-- but I think the usage of these words in the singular needs to be even more common before I finally give in to the language barbarians.


it's after noon, and...

Mom is still sleeping. At this point, since we're into Week 3 of the radiotherapy, it's probably safe to assume that Mom is feeling the effects of what she's been going through. Fatigue is just another thing we have to incorporate into our daily "routine." The word "routine" is in scare quotes because, truth be told, almost every single day brings us something different in terms of Mom's symptoms and actions. Sometimes the changes are small, like the almost-palsied quivering of Mom's right hand; sometimes the changes are more significant, such as when Mom goes from verbal to nonverbal and back.

The latest major problem is one I've written about before: Mom's tendency to grab at, fondle, and pick at anything she can reach, especially cloth. Whether it's her own bathrobe, or a blanket with strangely patterned stitching, or even a paper napkin, if it's within Mom's reach, it becomes fair game. Mom can't explain her own compulsion; she's aware that it's happening, but once she starts, the only way to stop her is to take away the objects that are fascinating her. It used to be easy to do this, but lately, Mom has begun to resist having objects taken away. She doesn't resist strongly; she merely tightens her grip on the object she's holding. once the object is taken away, her hands go limp for a moment, then begin searching for something else to feel. Her fingers obviously need something to keep them busy. When she and I watch TV together, I hold her right hand, which squeezes my left hand in an agitated manner.

My brother Sean has suggested buying for Mom certain kinds of toys that will allow her to give vent to this compulsion. It's a good idea-- Mom would have something endlessly fascinating in hand, and the objects around her wouldn't suffer any more damage. As a family, we've floated some toy ideas, and have largely agreed that several different types of toy would be good: Dad suggested, for example, a sliding tile toy; I've been thinking more along the lines of a snake puzzle. What we want to stay away from are things like stuffed animals, which would become targets for Mom's plucking fingers (she's already begun to de-fur the hem of her bathrobe). The toy needs to be a single piece with movable parts-- something to fuel fascination, allowing the toy to divert Mom's attention from damaging other things. I have no idea whether Mom's compulsions will become stronger as her cancer progresses, but just in case, the toys shouldn't be easily breakable.

At some point, either Dad or I will step out and buy a few items for Mom. Here's hoping the strategy works.