Saturday, November 28, 2009

a brief walk

Dad and I took Mom for a walk this evening, having failed in our attempt to take her to Tysons Corner. The parking lot of the mall was jam-packed with cars when we got there; traffic cones and traffic guards abounded, and after crawling along the access road for several minutes, we decided to go back home: the effort simply wasn't worth it.

Mom's walk was short, but we were happy that she was able to walk any distance at all. We walked partway up the street, passing three or four houses, then turned around, walked back home, slowly made our way up our inclined driveway, and finally took Mom up the wheelchair ramp to our back door. I was impressed that Mom didn't falter at all during the uphill portion of the walk; in her state, both the driveway and the wheelchair ramp can be a challenge. I was chagrined, however, to note that Mom was back to compulsively squeezing my hand as we walked: she used to do this months ago, when she seemed to have less motor control because of brain swelling. As I wrote before, the clinical signs we've been seeing lately don't add up to a coherent picture.

Mom's been sitting quietly in the living room; soon, it'll be time for her to sleep. All in all, today was a better day than yesterday for her, in part thanks to the visit we received from Mr. and Mrs. James, who spent time talking with Mom and us guys, and also gave us a lovely jar of strawberry rhubarb preserves.

Tomorrow, we've got nothing on the calendar, but the coming week promises to be very busy, especially for Dad.

Monday (11/30): Mom has an appointment to see Dr. Meister, the medical oncologist managing her Avastin and carboplatin regimens, for a checkup.

Tuesday (12/1): Dad's off to a Northwest Airlines "good-bye" party, sort of a last hurrah before Northwest is completely absorbed by Delta Airlines.

Wednesday (12/2): Mom visits Ulta (cosmetics store) for a preliminary evaluation before her free makeover later in the month.

Thursday (12/3): Mom's goes to Prosperity Medical Center for both Avastin and carboplatin infusions. This will take up a huge chunk of the day.

Friday (12/4): Pastor Jeri will be visiting.

The following week is the week we go to New York to see about this newfangled experimental treatment at New York Presbyterian/Weill-Cornell. My brother David says he might be able to join us, but I don't know whether Sean can.

Much to do, much to plan, much to prepare. Life is never boring.

UPDATE: When Dad and I helped Mom off the couch for the night, I hugged Mom and said, "I love you." Tonight, she whispered "I love you" in return, and gave me a beautiful smile to boot.


Saturday sit rep

The sun is shining, my brother David has just made a batch of gooey cinnamon rolls, Mom is awake and about to receive a shower from Dad, and I'm doing little more than typing this entry.

Mr. James and his wife will be here at 3PM; after their visit, we'll be taking Mom out to Tysons Corner, a mall where the parking is free and the pedestrian thoroughfares are wide. Mom can witness some of the post-Thanksgiving shopping craziness firsthand, and might even have a chance to try walking.

Mom's leg strength has varied this past week. One day, Dad brought her out to the living room by hugging her and walking backward, essentially bearing all her weight himself. On other days, Mom has been strong enough to walk while we held her hands, merely to aid her balance. When I look back over the last ten or so days, it seems to me that, if Mom's various vital signs and symptoms were put on a graph, we'd see a haphazard picture, filled with random peaks and valleys. Her balance, her strength, her perseveration, the wateriness of her eyes, her verbosity, the puffiness of her feet... these things have all varied in different ways-- not in synch with each other, and not according to any detectable rhythm. The overall picture is rather chaotic; I don't know what to make of it.

We're also dealing with Mom's extremely chapped lips. She has been slack-jawed with increasing frequency, breathing through her mouth, and this dries her lips out. The chapping was quite extreme during the days before Thanksgiving; that was our fault for not keeping up with the maintenance. We've been doing what we can to gently soften and exfoliate Mom's lips; based on what I've seen online regarding care for severely chapped lips, the rejuvenation process will take a while, I think. Mom's had the warm washcloth treatment, as well as warm teabag applications, vitamin E rubs, standard lip ointment, and as of yesterday, a new, special lip ointment. I expect she'll be looking a lot better, if we pursue the problem consistently, by the end of next week.

So that's the situation here. More later.


two pics from Thanksgiving

From this past Thursday:

The above photo doesn't include Dad, who took that shot. Below, we've got Dad and David with Mom, who is on her way to bed.

The first photo, which gives you some idea of the food we ate, doesn't show half the food. Sean's massive trays of broccoli casserole and green bean casserole (and David's rollicking sweet potato dish) are sitting atop folding trays very close to the sliding glass door. Unfortunately, those trays are significantly shorter than the dining room table, so they aren't visible in the photo... unless you can pick them out in the reflections in the sliding door.

Of note in the second photo, aside from Mom's beauty: the mass of cards from well-wishers atop our hearth.


Friday, November 27, 2009


Mom's gotten the royal treatment from Dad and me today: I spoon-fed her her afternoon meal because she seemed unable to feed herself. Her perseveration steals away what little initiative she retains: she might take a spoonful of soup out of the bowl, then simply stare at the soup in her spoon instead of eating it.

We've noticed that this condition comes and goes. If it's related to brain swelling, then this means that the swelling itself must also come and go-- a state of affairs I hadn't thought possible. I had thought that brain swelling always followed an upward curve. Some other cause might be responsible for Mom's behavior, but I wouldn't know what: Mom's perseveration has always been linked to intra-cranial edema, and the cause of her edema has always been tumor growth. Unless we're looking at some new, mysterious phenomenon (besides tumor growth) that's making Mom's perseverative flareups periodic instead of steady, the best hypothesis is that the edema itself follows some sort of cycle. The cancer probably does grow steadily, but since the edema is the brain's reaction to the pressure of the cancer, it could be that the brain's reaction follows some sort of sinusoidal rhythm, like a slow pulsation.

It was a very tranquil Friday. Mom woke up too late to receive a visit from her friend Mrs. Burns, who had wanted to come by today. Instead of visiting, Mrs. Burns very kindly gave our family some Zuni peanut brittle, roasted peanuts, chocolate nut clusters, and chocolate-covered peanuts. I gave Mom a small sampler platter, along with some of Dad's pumpkin pie and David's pumpkin ice cream.

Also of note: we received a post-Thanksgiving phone call from Texas. Mom listened as her sister spoke to her over the phone. She managed to whisper "I love you, too" when my aunt expressed her love for Mom, and she did the same for me later on before going to bed. From my point of view, the day was all too brief: Mom's already back in bed, having been out and about for not even eight hours. I don't begrudge Mom her need for rest; she continues to fight the monster inside her head.

Tomorrow, our family friend Mr. James will be visiting at 3PM. Sometime after that, Dad wants to take Mom out to a mall so she can try walking around. She's been very weak lately, and still has problems with puffy feet (an effect of the Decadron, as you'll recall), which hurt her and make walking difficult. Dad and I need to get on the ball about making Mom exercise while she's on the couch. We're pretty good about persuading her to use the spirometer, but as the weather has cooled, we've been remiss in taking Mom out walking. I'm worried about Mom's diminishing lung capacity, especially combined with the deterioration of her immune system. Her inhalations on the spirometer are becoming progressively weaker.

We're waiting for some sort of response from Mom's team at NCI regarding our trip to New York. I have no idea what Dr. Fine will say about our hopes at enrolling Mom in the Weill-Cornell intra-arterial Avastin program at New York Presbyterian. I'm guessing he'll advise against it, but for all I know, he may have taken a look at the work being done at NYP, and might agree that that's where Mom needs to go.

In other news: my old boss at Sookmyung Women's University wrote to tell me about a job opening in my old department this coming March. I had to write her back to remind her of Mom's situation, and to say that, unfortunately, I had no idea how things would be come March. I expressed my regrets at not being able to give her a definite answer. She wants me back, and I'd love to be back at my old job, which was easily the best job I'd ever had in Korea. Right now, though, I'm still at home, and am not actively seeking work: being away from home for eight to ten hours a day would put a more extreme burden on Dad than what he already shoulders.

And that's life, post-Thanksgiving, at our house. In a nutshell: it was a quiet Friday. I fed Mom her one big meal of the day (and her dessert); Dad clipped her toenails; we rejoiced that Mom's feet weren't swollen, thanks to the Maxzide she's taking. Mom spent the day watching TV. She didn't exercise, but I did get her to use the spirometer. And then, all too soon, Mom was back in bed. She barely got to see any daylight.

Here's hoping she'll be more alert and active tomorrow.


only just awakened

Mom did what I did, and took her sweet time waking up. As of right now (check the time stamp at the bottom of this post), she's awake, but still wants to stay in bed. This sort of behavior is normal for Mom; she'll be out eventually.



Slow, slow, ssssslllloooooowww day.


Thanksgiving 2009

I hope your Thanksgiving went well, if you celebrated. If not... then I hope your November 26th went well.

Our meal came together nicely. The turkey turned out nearly perfect (and we are now all converts to the religion of brining), as did my stuffing, my peas and carrots, and my cranberry sauce. I ended up making two types of cranberry sauce by accident-- long story.

The food that my brothers brought turned out wonderfully as well. Sean brought a green bean casserole and a broccoli casserole; both were magnificent. He said he wasn't happy with the way his biscuits turned out, but I thought they tasted great with butter and cranberry sauce. Sean also helped me make the gravy, a process that was often amusing and sometimes scary, as neither of us had made gravy from turkey drippings before. In the end, the gravy was fine, nicely complementing the turkey and the mashed potatoes.

Speaking of those potatoes-- they were perfect. My other brother David was in charge of both mashed potatoes and sweet potatoes. He also made three kinds of ice cream: pumpkin, vanilla and "Atkins"-style chocolate for Sean to take home with him.

David's mashed potatoes were actually more toward the "whipped potatoes" end of the spectrum, but they were impeccable-- not liquidy at all, and not gooey from over-whipping. His sweet potato dish was great but also hilarious-- it made me laugh because the textural contrast was pretty extreme: David had broiled the marshmallow topping into a hard brown carapace, while the sweet potatoes themselves were almost fluffy. The contrast of soft and hard worked well, though: the dish was a delight to chew and to taste. David's three ice creams were all very nicely done, too.

Dad's efforts at making dessert-- two pecan pies, two pumpkin pies, and two rum cakes-- paid off handsomely. Everything he made was fine. Dad can be his own worst critic, though, and he worried about how the pecan pies turned out. For my money, that dessert was my favorite of the three.

So everything went about as well as it could have. We made enough to feed fifteen or twenty people, so we're overstocked with leftovers. Not to worry: we'll be scarfing everything down over the coming week. (Visitors: PLEASE DO NOT BRING FOOD!)

Mom was more animated than she had been recently, perhaps because Sean brought along a special visitor: his black chihuahua Maqz. Mom loves that dog, and when she saw him, she immediately said, "Hey, baby!" in her high-pitched, saccharine, cutesy voice-- the voice she never used for her sons, but always reserved for the dog. Dad noticed that Maqz seemed nonplussed: Mom was wearing her helmet and had obviously changed in terms of her health and demeanor; the last time Maqz saw Mom was in April or May, before her massive MRSA infection, and before she'd had part of her skull removed. As dogs often do, Maqz probably sensed right away that something was very wrong. Still, despite the fact that I think him a naughty, spoiled dog, he settled next to Mom after dinner and allowed her to stroke his head. For a moment, it felt like old times, and I was touched to see the bond between Mom and her favorite dog.

Overall, the day was a mix of frenetic preparation, monstrous gluttony, desultory dish-washing, and postprandial quiescence. By 9PM, everyone looked slumped and exhausted, defeated by the sheer amount of food. It's right and proper that Thanksgiving should come only once a year: any more often than that, and the entire country would explode.

Mom rested on the couch a while, then went to bed around 11PM; Sean left early with Maqz; he said he needed to be up early on Friday. David hung around and helped with food containerization and cleanup, and also helped Mom off the couch when she felt it was time to go to bed. Earlier in the evening, Sean had tried to use my computer, and we discovered that my poor Asus had caught a virus-- one that suckered me into paying $40 for bogus anti-virus software. I flushed the virus, but will need to call my bank Friday morning to cancel payment. Stupid, stupid, stupid. It was a bizarre note on which to end an otherwise good day, but I'm hoping that there won't be serious ramifications from this mistake (it may be too late: I gave the virus a bunch of crucial personal information).

Lurking in the background of all this hubbub was the thought that this might have been Mom's final Thanksgiving. She's seven months into this trial now; GBM victims of Mom's age normally live an average of thirteen months, so the clock is always ticking. I've been trying to tell myself not to think in such terms-- "final Thanksgiving" or "final Christmas" or "final trip to Texas." Better to live moment to moment, to concentrate on the present and deal with the matters at hand. That's enough stress right there, isn't it? And yet... somber thoughts burble up unbidden. As time marches relentlessly forward, and Mom's tumors with it, I find myself reflexively marking the days by taking note of each milestone on the calendar: birthday. Thanksgiving. Christmas. Seasonal changes.

In times of trial, it's easy to despair. Dark thoughts have a way of creeping into the mind, settling there and threatening one's equilibrium. Such thoughts needn't be banished, but they do need to be put in proper perspective, especially on a day like Thanksgiving. Yes, time grinds on, bringing Mom ever closer to the end... but that's just as true for the rest of us as it is for her. Death is, when looked at this way, a universal-- and therefore trivial-- fact of life. We make a big deal of death, but its inevitability is inscribed in the nature of the cosmos. Worrying about the inevitable may be natural, but it's not the most constructive thing we could be doing. Thoughts of death should be tempered with gratitude for what each new moment brings, for the people we know and the new people we meet, for the care we receive and for our ability to return such kindness. Life isn't merely lived deathward; it's also lived lifeward.

So instead of ending this post on a somber note, I'd like to express how thankful I am to be part of such a loving, caring family. We've shown each other that we know how to come together in a time of crisis-- that we won't abandon or ignore each other, and that we can work despite our differences toward a common goal, such as offering Mom the best possible care and attention. I'm also thankful for friends like Mike, who have taken time to be there for us, or who have written me from afar. I'm thankful for the various circles of care that have ministered to us-- Mom's Korean women's society, our church, and Mom's former coworkers. Cards, food, bouquets, and gifts still come from all directions.

If acts of kindness are the flowers we give each other, then our family is blessed with a magnificent garden.


Thursday, November 26, 2009


Gotta remember: the turkey (currently brining in one of the downstairs fridges as I write this) absolutely must go into the oven by 1PM.

Or the universe as we know it will cease to exist.

And will be replaced by a universe that looks and behaves exactly like this one.

Except that all of the new universe's living creatures will emit a pleasant, chocolatey odor.


Wednesday, November 25, 2009

Thanksgiving Eve

Dad's finished with his baking: two rum cakes, two pumpkin pies, and two pecan pies. Quite an achievement for a guy who still claims he's not able to cook. Bravo, Dad!

We're eating small tonight in preparation for the morrow, and I'll be doing a good bit of prep this evening and tonight. I checked the turkey, which is, alas, still pretty hard. The outer quarter-inch of the turkey has softened up nicely, but the deeper layer feels like Rambo's biceps.

Although it's not recommended, I'll be switching to a quick-thaw method to thaw the obstreperous bird the rest of the way. The method involves cold water, changed every 30 minutes, and as with other quick-thaw methods, this potentially invites microorganisms into the picture. I plan to minimize the danger by brining the turkey immediately after thawing. The salt (1 cup kosher salt per gallon of liquid) ought to take care of any beasties.

My other prep involves the cornbread stuffing. Tonight, I'll be making the bread, then setting it out to dry overnight. Meanwhile, I'll be cooking up the sausage, slicing the celery, and getting the other stuffing elements ready to throw together tomorrow.

I imagine David and Sean are doing their own share of food prep; David's bringing over ham, sweet potatoes, mashed potatoes, and two varieties of homemade ice cream, and Sean is bringing over broccoli casserole, green beans, and biscuits. Dad's done with dessert prep, so that leaves me to take care of the turkey, stuffing, peas, carrots, cranberry sauce, and the strawberry sauce that will go atop the rum cake and ice cream.

So the food for our family's Thanksgiving is currently spread all around the DC-Metro area, but I expect that everything will gel tomorrow when everyone comes together. We plan to eat around 4:30 or 5PM-- just us five. Just our family.

Happy Thanksgiving, everyone.


thank you (and a reminder about our visitation policy)

Our thanks to Mrs. Park-Barr and her husband for visiting, and for kindly dropping off some lovely pomegranate juice, a Thanksgiving card, and a Safeway gift card (which will see a lot of use in the near future!). My apologies for keeping the visit brief, but Mom wasn't ready to see anyone. She had a late start to the day.

Just a general note to all potential visitors: as consistent readers of this blog know, we ask people to contact us at least a day in advance if they want to visit. This minimizes stress on both Mom and us (by "us," I mean my father and me, Mom's caregivers), especially during a busy time like the holidays. We've been more relaxed about people who say they're coming by to "drop something off," but in such cases, I normally don't let people in past the door. I apologize if this seems unwelcoming, but I've repeatedly made our visitation policy clear, and have tried to enforce it as consistently as possible without being rude. We don't want to ruffle anyone's feathers, but we also don't want anyone ruffling ours. I hope that sounds fair.

So please call a day ahead if you want to visit, i.e., actually come into the house and see Mom. Thanks.


prep continues

Dad did himself proud by baking two pecan pies last night-- his first-ever attempt at making something other than rum cakes. Today, he's got two rum cakes and two pumpkin pies to make. My sense of smell was coming and going yesterday, despite the arrival of my neti pot (which did help somewhat), but I noted with satisfaction that, thanks to Dad's baking, the house smelled like Thanksgiving late at night.

My own prep also continues. Yesterday, I made some cranberry sauce, a sweet strawberry sauce that will go atop slices of rum cake and vanilla ice cream, and a gallon of mulled cider. Today, the main goal is to prep the elements for the stuffing that will be completed tomorrow, and to initiate the turkey-brining process. I've never tried brining a turkey before, but it's all the rage in this Food Network era, so I've been reading up on it and watching the TV gurus demonstrate various ways to do it. The point of brining the turkey is that it keeps the meat very moist through the baking process and also adds flavor. However, the experts also note that a whole turkey shouldn't sit in the brine for more than 12-15 hours. Beyond that point, you've got a bird that's super-saturated with salt.

So I won't be brining until very, very late at night-- say, 11PM or thereabouts. I can check the turkey at noon tmorrow, have it in the oven by 12:30 or so, and have it out by 3:30 or 4PM. We're supposed to eat between 4:30 and 5PM, so this ought to work out just fine.

There's nothing else on tap for today. Dad says he wants to get Mom's advice on making the pumpkin pies; I don't know what she can tell him, but I'm happy that he's engaging her in the Thanksgiving-prep process. Mom often likes to sit at the kitchen bar and watch the goings-on; I hope it amuses her to see her husband in there. Dad-as-chef is a rare sight in our house.


thanks, all

A word of thanks to the readership for having alerted us to the New York Times article about the experimental intra-arterial Avastin treatment. If it hadn't been for your attentiveness, this technique would never have captured our attention. Good save, everyone. Because of you, Dad immediately got on the ball, made contact with New York Presbyterian, and got Mom her first appointment-- December 8, as previously noted. We'll be driving up to Manhattan on Pearl Harbor Day, staying overnight right next to the medical complex, and wheeling Mom over the following day, possibly to meet with the very same Dr. Boockvar mentioned in the NY Times article. If he's a celebrity like Dr. Fine, then we might meet other members of his team.


Tuesday, November 24, 2009

awake and eating

Mom's awake and finishing up a late lunch of East-West leftovers: yesterday's spaghetti (quick bolognese with angel hair and parmesan) plus a bowl of Korean seaweed soup brought over by Mrs. Farwell a few days back.

When I saw Mom in the bathroom a couple hours ago, I noticed that her feet were swollen, the left more than the right. Her feet and ankles also had the same reddish/purplish discolorations I'd seen before. I asked Dad whether these patches were as prominent when Mom's feet weren't swollen, and he said they were indeed visible even when Mom's feet were normal. Dr. Royfe had the chance to see Mom's feet yesterday, when they were less puffy, but he apparently didn't find the discoloration remarkable. For the moment, then, I'm going to assume they aren't the sign of anything urgent.

Mom's alertness is at about the same level as it was yesterday. That's two days in a row, now. Is she improving, ever so slightly?

Other big news: Dad's correspondence with New York Presbyterian has paid off: the facility wants to see Mom for an initial appointment on December 8. We'll be driving up on the 7th and checking in to a hotel-style guest facility right there on the hospital campus. It's possible that insurance will cover the use of this facility; if not, it's not a terrible deal at $225 per night for at least three people-- and that's for a rather large 1-bedroom space with its own living room and kitchen.

Aside from our friend Renée, we've had kind offers from other folks who have expressed a willingness to house us during our stay(s) in New York. Two things, however: (1) this upcoming December 8 trip is only for one night, as the only purpose of the trip is to allow the docs to evaluate Mom. We're still unsure whether she's a viable candidate for their intra-arterial Avastin study. Also, (2) location matters when you're dealing with someone's mobility issues. Having Mom right smack-dab on the hospital's campus is, logistically speaking, the best possible scenario. Wheeling her across the street from the guest accommodations and into the huge complex that houses the bulk of the NYP campus leaves us with little to do but take a short stroll. All other options will involve elevators, stairs, cars, traffic, distance, and time. For December 8, at least, there's little need to trouble anyone about a place to stay.

Things will be different if Mom is successfully enrolled in the clinical trial. It's possible that Mom will have to stay in New York a while, in which case cheap accommodations will be necessary for the family. I assume Mom will be housed inside the hospital proper for the duration of the trial period. Or perhaps she won't need to be: if the procedure is quick and simple (no one has to drill directly into her head; the microcatheter is inserted into the carotid artery, i.e., into the neck), then Mom might need only a single night at the hospital, after which NCI can monitor Mom and send the data back up to New York. I'd much prefer such a scenario to spending days or even weeks away from home.

Much still to find out. Wish us luck.


the cooking begins

Dad's spending today baking. His agenda includes pumpkin pies, pecan pies, and one or two rum cakes. I'll be prepping cranberry sauce for Thanksgiving dinner, as well as strawberry sauce for dessert. The latter sauce will be drizzled on slices of rum cake and scoops of vanilla ice cream.

Late tomorrow night, I'll begin the turkey brining process-- the bird's been thawing since Sunday night-- and will also begin constructing the cornbread stuffing. On Thursday, I'll be baking the turkey, finishing the stuffing, and prepping peas and carrots. My brothers will bring over their dishes, which they'll either finish prepping or reheat here at the homestead.

We couldn't help noticing, while watching a host of Food Network Thanksgiving specials over the past few days, that there was a striking contrast between Giada de Laurentiis and Tyler Florence. Giada's Thanksgiving special depicted her escaping an intense family game of "bocce ball on the beach" so as to prep the Thanksgiving meal by herself in an atmosphere of peace and quiet. The kitchen was her sanctum sanctorum. Tyler, on the other hand, talked about how meaningful it was to involve everyone in the making of the feast. Giada's program tends to showcase her control-freakish tendencies, so it makes sense that she would want to monopolize the cooking and prepping process. While I wouldn't exactly call Tyler easygoing (the man talks way too fast), he does seem more the type to be comfortable with other people in the kitchen alongside him. It may be that he has a higher tolerance for chaos, or is confident that he can redirect any chaotic urges/actions to more orderly outcomes.

I have my moods when it comes to food prep, often rejecting help, Giada-style, in favor of doing everything myself. Such behavior is control-freakish and betrays a lack of trust in others. But I'm not always that way: I'd have to agree with Tyler, for example, that there's something meaningful about involving the family in the meal-making process, especially this year. Mom used to be the center of the Thanksgiving whirlwind; she was the one who did most of the prep, with peripheral help from us kids. This year, however, it's up to us guys to put out a fine meal that we all can enjoy; we're doing this for Mom, so in a sense, she's still the center of the Thanksgiving whirlwind, the hub without which the wheel makes no sense.


more alert

Mom was more alert on Monday than she had been on Sunday. While she didn't speak much, she did give me a bright-eyed "Hi!", along with a smile, when she saw me for the first time, a little after 1PM. She had a good appetite at lunch, and even felt good enough to sit on her barstool without any grimacing or complaints. As the day wore on, she remained quiet but responsive, laughing gently at my attempts at humor; she was even able to pull her focus away from the TV to look at me whenever I called out to her from the kitchen. Unfortunately, she didn't eat much dinner, but these days, that's not necessarily a bad thing: we're still campaigning to keep her blood sugar down, and because she's gained back so much of her weight, we can ease back on the quantity of food we give her. If she eats only a few bites at night, it's not tragic at this point. She's not starving by any means.

I wasn't upstairs when Dad put Mom to bed, so I didn't have the chance to do my usual good-night hugging ritual. When I got upstairs, I went over to Mom's bedside and whispered "good night" to her, rubbing her arm through her blanket. A moment later she stirred, and with some effort, Mom drew one of her hands out from under her blanket, freeing her fingers to wave at me and to hold my hand.

Final note: Dad took Mom to see Dr. Royfe, the parents' primary care physician, on Monday. The doctor's office is right down the street from us, so I didn't come along. Dr. Royfe told Dad that Mom has a vitamin D deficiency (this was true even before the cancer); he also offered us some strategies for helping Mom exercise her muscles, and gave Dad some advice about how to feed Mom her supplemental protein without upping her blood sugar too radically. Aside from that, and aside from the brain tumors, Dr. Royfe was satisfied with Mom's overall condition.

Now she's asleep. How will Mom be tomorrow? Alert? Withdrawn? Could the alertness mean that the carboplatin is working, or was this just a hiccup in a generally downward trend? Thus far, Mom has had only one infusion of carboplatin; while my own intuition, based on the worsening of Mom's symptoms, is that the carboplatin is doing nothing for her, it's possible that, as my buddy Mike ventured, the drug is working, albeit slowly. We'll know more sometime close to the new year.

Dad, meanwhile, has been diligent about communicating with New York Presbyterian; their office has requested quite a bit of paperwork, and Dad's the paperwork guru in our house. I'll keep everyone updated about whether Mom is deemed eligible for the intra-arterial Avastin trial.


Monday, November 23, 2009

almost hawkless Sunday

Sunday was notable for me in that I hawked up almost no snot. Definitely an improvement over what's been happening for weeks. My nose remains mostly blocked, but my senses of smell and taste now come back intermittently. With my new neti pot arriving Monday or Tuesday (thanks,, I ought to be ready to enjoy Thanksgiving. If not, well... at least I'll chew my food with gusto.

In other news: Mom was tired during most of the time she lay on the couch on Sunday. She ate very little dinner (not hungry, as I suspected), but got all her meds and did a lung workout on her spirometer. How she'll be on Monday is anyone's guess.

David came over Sunday evening, arriving not long after I had finished mowing the front yard. He was dead tired, and spent much of his time sleeping, though he did wake up both to eat dinner and to watch the final episode of "The Next Iron Chef," whose conclusion was easy to predict. Dinner was breaded chicken breast on angel hair pasta with a fondue-based sauce, plus a baby spinach salad topped with fruits and nuts. Not bad, if I do say so myself.

This coming week is mostly about Thanksgiving prep. It'll be just the five of us-- an intimate dinner with a ton of food, most of which will have to be packed up for reheating. How's your prep going?


Sunday, November 22, 2009

Mom report

Mom got out of bed quite late today; I showed Dad what to do to prep lunch for her, so that I could go out and work on the front yard. Leaf collection took some time, but the job wasn't nearly as arduous as the last time I performed the same task. This time around, instead of nearly twenty bags of yard debris, I had only about five. The next time I do the front yard, about two weeks from now, I probably won't have more than three bags. The back yard, which I'll be doing next week, will be similar: except for the space underneath the evil tree (the one mentioned in the previous post), the back yard is looking almost pristine. At best, a light dusting of leaves covers the yellowed grass.*

When I got back in from today's labors, I saw that Mom and Dad were at the kitchen bar, and Mom was eating a very late lunch. Knowing Mom, I can assume she started much earlier, possibly as much as 90 minutes earlier. Such days are awkward: because the meal schedule has been thrown off, I tend to treat Mom's lunch and dinner as one long meal, done in phases, instead of as two distinct meals. What usually happens is that Mom will end up eating a super-small dinner, then will be ravenous the next day at lunch.

Dad said that Mom was too sore to sit on her barstool, and that she had been standing there, eating her meal, since she had come out to the kitchen/living room area. Mom is probably still bruised and aching from her fall a while back, and according to Dad, she's starting to ache all over from the various places where we grip and push her to get her into, out of, onto, and off various places, like car seats, toilet seats, beds, couches, stairs, ramps, and yes, barstools. Her hips are sensitive, as are her ribs. With so many blood-thinning medicines careening through her body, I'm worried about the implications of bruising. For normal people, a bruise isn't a big deal, but for people with a tendency to bleed, bruises can be dangerous.

More worrisome, however, is that Mom has a runny nose today. She's had the occasional cough or random sniffle before, but in each case, Dad reassured me that her condition was only temporary, and he was always proved right. This time, though, Mom's nose was undeniably runny, which may be cause for alarm. I've spent my life since September 28 doing my best to keep Mom from catching whatever I got that day; now, it seems, Mom has caught something entirely different. Her immune system is pretty shredded at this point; we'll have to watch how this runny nose progresses, and if signs worsen, we'll need to take her back to her infectious disease specialist for an antibiotic prescription. In the meantime, we've given her some cold medicine (after checking online about drug interaction, of course).

6:06PM: Mom finished her meal about 15 minutes ago, and is now on the living room couch, comfortably on her back so as to relieve pressure on her fundament. I'll be making dinner soon; for Mom, who ate late, this will simply be Phase 2 of lunch.

UPDATE, 6:39PM: Here's a recent picture, probably from before Mom's oversleeping incident from two Tuesdays ago, showing Dad and Mom asleep in bed.

*NB: Our weeds, however, are still green, as is the onion grass.


yard work

The leaves continue to fall. We have one tree in particular that is especially obnoxious on this point: it seems to have an infinite supply of leaves, which it drops on both our yard and the next-door neighbor's yard at a pace designed to madden us. Sweep away all the leaves one day, and the cleared area is covered the next day. Look up at the tree, and the number of leaves seems unchanged. It's like a grim version of the miracle of feeding the five thousand.

But that tree, which sits by the side fence and hangs over our wheelchair ramp, won't be the focus of my yard work today; I dealt with it last week. No: today, I'll be mopping up the front yard, which is no longer as leaf-covered as it had been. The maple out front is about done with dusting us, so today's session might be the last, or next-to-last, leaf collection for the front of the house until next fall. Still, wish me luck. This might take a while.