Saturday, October 24, 2009

another day of no walking

Mom finally made it clear today that her feet hurt; she indicated, once again, that she didn't want to walk. We're going to drive out to Skyline Drive tomorrow, probably just to drive around, but we might get Mom to do a bit of walking whenever we park at an overlook. We have to strike some sort of balance between Mom's feet (the only worrisome symptom) and her need to exercise her legs. Perhaps a series of super-brief walks is in order, and Skyline is the perfect place to try that strategy.

Mom's quietly eating a Korean risotto right now; I had wanted to make my usual juk, but didn't have any more chap-ssal, the super-sticky glutinous rice that often makes it into certain types of Korean porridge. Mom's carb intake is normally lower in the evening, but I'm risking the risotto/porridge tonight because the weather is cooling down.


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what Mom didn't do

Yesterday, Friday, Mom decided she didn't want to walk, so she's going to have to go out for a walk today. Her feet are still very puffy, which makes me wonder whether it hurts her to walk. Dad has left a message with Dr. Royfe, the parents' primary care physician, and we hope he gets back to us early next week about those feet.

As I mentioned before, Mom's vitals and blood work are fine: she isn't ingesting too many carbs (we'd see this in her blood sugar), and she isn't consuming too much sodium (we'd see this in her blood pressure). But Decadron has many unpleasant side effects: it breaks down muscle tissue, which can lead to weight loss through loss of muscle mass; it also increases appetite, which is a good thing when you're trying to feed the patient more protein; and it's been known to cause swelling in the extremities, which is probably what we're seeing now.

The end result is that, lately, Mom has been less enthused about walking, and her feet may be one reason why. It's also possible that the weather is another reason. No matter: we've got to get Mom moving today, even if that means just walking her around the back yard.


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Friday, October 23, 2009

finally!

It took months to do it, but I finally installed a new and long-needed light bulb for our side basement door. The house already has plenty of outside lighting, but the absence of this particular light has been bothering me. I should have done something about the problem long ago, but as they say, I never got "a round tuit." If it's true that we get around to doing things only when we feel it's important to do them, then I can only conclude that, for a long while, I didn't find this bulb all that important.


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pastoral

Our thanks to Pastor Jeri for coming by and sitting with Mom.


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correction

Mom's MRI will be on the 28th next week, not the 29th. Dad told me that this was, in fact, the original date for the MRI. When I told him I would blog the correction, he said, "Tell them [the readers] that the old man made a mistake." Heh.


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Thursday, October 22, 2009

tantalizing

I don't know whether I'd apply the term "holy grail" to any sort of cancer treatment, but this does sound promising:

Researchers at the University of Pittsburgh School of Medicine and the National Cancer Institute (NCI), part of the National Institutes of Health, may be hot on the heels of a Holy Grail of cancer therapy: They have found a way to not only protect healthy tissue from the toxic effects of radiation treatment, but also increase tumor death.

NCI is the center that now has a primary role in caring for my mother. We'll be talking with Dr. Fine about this new development, even though we know the research isn't complete. At the very least, the doctor might be able to give us an insider's perspective on where the research is going, and how soon it'll get there.


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it may be too early to say this, but...

I may be getting better. I've coughed a lot less today, and while my chest continues to rattle, the rattling and general phlegminess have been less pronounced than they had been over the previous 24 days. How the hell can a simple infection last a whole freakin' month? I've been pumping vitamins, resting, drinking plenty of fluids like water and the occasional clear juice. I even went through a 10-day cycle of prescription meds, but in the end, it truly seems that the only thing one can do is weather the illness while it runs its course. Maybe most medicines are a placebo, designed to make us think they're working when in fact they do nothing. I hope I'm wrong: that thought has some dark implications.


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almost two hours

We got to Prosperity Medical Center at about 11AM, and I didn't get a "pick us up!" phone call from Dad until 1PM. Dad says that Mom didn't have the chance to enjoy a private room this time; she was out in a larger room with many other patients, all hooked up to IVs for various reasons.

I remember walking through that room the first time Mom had an Avastin infusion; the room is on the way to the kitchen. On that first day, we were told that a whole spread had been laid out in the kitchen for the taking-- pastries, doughnuts, cookies, chips, fruit juice, soda, etc. Sure enough, there it all was, and I brought back a bundle for us all to share. But on Mom's second and third visits, this wasn't the case. I joked with Dad that the medical center must dangle the junk food in front of patients on their first day of treatment in order to lure them further into the health care web.

We're back home, lunch has been served, and Dad's off getting the minivan's tires-- all four of them-- replaced. Mom seems fine after her Avastin session; she's not very talkative, but she's aware and functioning.


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flat

The van had a flat tire yesterday, which forced us all to squeeze into the small sedan to go to the medical center. Later in the afternoon, Dad changed the flat for the van's spare "doughnut," and he'll have to drive to the nearest Costco automotive center to get a new set of tires. It's about time that this happened: at the van's last inspection, the inspector said that all four tires' tread depth was getting too shallow.

No idea what caused the flat, and no time to wonder: we're off to the medical center in five minutes for Mom's Avastin session.


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Wednesday, October 21, 2009

a decent Wednesday

When I picked Mom and Dad up after Mom's blood work and doctor consultation, Dad said that the reports were good: Mom has gained another 6 pounds, her blood work is fine, and her vitals were fine. Dr. Meister apparently recommended that Mom should go to speech therapy to help her with talking, but when I asked Dad for specifics, he said that the doctor hadn't gone into any detail. How soon we should do this, and why the doc thinks speech therapy might help-- we don't have this information.

Instead of driving straight home, we took Mom for a walk at Fort Hunt Park, stopping along the way to buy ourselves some bottled drinks. Mom walked her 680 yards, but somewhat slowly. She also seemed even weaker than usual when it came to getting out of the car, or with standing up after being seated at a picnic bench for a few minutes. She showed similar difficulty when she got home, struggling to get onto her bar stool. Still, despite her weakness, Mom was determined to walk up to our back door via the deck steps and not the ramp. She managed the feat, but it took a lot of help, and several pauses.

Dad told me, later in the day, that the doc also had good things to say about the level of Mom's home care. It seems we're doing something right. I'm glad to hear this: striking a balance between providing too much or too little care isn't easy, and it's not always clear we're doing the right thing. Mom still retains enough pride to get antsy when we over-coddle her, but she also tends to remain silent when she's suffering, such as when she's too cold (we periodically check her extremities for just this reason; hand-holding sometimes has an ulterior motive). It's good to receive outside confirmation that we're not neglecting anything major.

Tomorrow, we head out to the same place for Mom's Avastin infusion. This will be the third session; the infusion will last only 30 minutes, and all subsequent infusions will also be 30 minutes long.


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Mom and Dad at Fort Hunt Park (about to go for a walk)

Sent via BlackBerry by AT&T

...and here's my mother's oncologist's car!

Sent via BlackBerry by AT&T

off to the doc

Blood and a quick consultation with Dr. Meister today, at 1:45PM. Leaving now.


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Tuesday, October 20, 2009

quick update

My aunt made it back safely to Conroe, Texas. Meanwhile, Mom decided she didn't want to walk today, so we'll be taking her out to the park tomorrow, after her appointment. She has to go get blood work done, and the day after tomorrow she gets her third infusion of Avastin.

The following week, on the 29th, Mom will go to NCI to get an MRI done; the following day, we'll go as a family to hear the news about whether the Avastin is working. The 30th is a very important day for us: the news might be very good, very bad, or somewhere in between. Ideally, we'd love to hear that Mom's tumors have responded to the Avastin by shrinking, and that there haven't been any new cancerous growths. The worst news would be to hear that the Avastin has done nothing, and that new tumors have formed in the meantime. My gut feeling, at this point, is that Mom's condition hasn't changed much, whether for the better or for the worse.

If the news we get from Dr. Fine turns out to be good, then I'll start looking for work. I may be doing all the cooking at the homestead, but I also do most of the eating, which isn't cheap for people on a fixed income.


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the last few sand grains in the hourglass

I'm just about out of prescription medicine. The cough syrup ran out a few days back, and I'm almost out of expectorant tabs and amoxicillin. The antibiotic didn't do anything: I still have a rattling cough, which has been with me for 23 days, now. Still no signs of pneumonia-- no blood or fever-- and still no headaches or inordinate fatigue. My energy level seems about the same. Nothing has changed in over three weeks, so maybe a lack of medicine won't make much difference. I've also been taking vitamins on the side; I sometimes wonder whether it's more the vitamins than anything else that are keeping me at equilibrium: I was taking them even before I visited that CVS clinic.

We'll see how this plays out. They say bronchitis usually needs to go away on its own, and that it lasts on average about two to three weeks. This morning, I felt as if I hadn't produced nearly as much lung-goo as usual, but later in the day, I started coughing and rattling again. Upshot: I have no idea whether I'm improving. Today feels slightly better than other days, but I may be mistaken.


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back to Texas

My aunt is on her way back to the Lone Star State after her brief stay at our house. We wish her a safe trip, and will see her again in early December. I'm thankful that she came over and spent time with Mom, sitting together in the living room, eating together both at home and away from home, walking in the Pentagon City mall, driving along the George Washington Parkway, and just being silly (Mom sometimes made a joke of not swallowing some of her pills, which drove Dad and Emo nuts).

What was true before remains true today: the best medicine for Mom is the simple act of being there, of holding her hand and talking to her. That's what Emo did for Mom, all day long, every day she was here, and we appreciate it.


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up earlier

I'll be waking up far earlier than usual-- about 9:30AM-- so as to be able to see my aunt off in the morning. Emo had arrived on Saturday; it's amazing how quickly the time passed, but it's good that the sisters had a chance to see each other, hold hands, smile, and talk.


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Monday, October 19, 2009

guests

Mrs. Merrill and Mrs. Neet, two of Mom's Korean friends, have stopped by and are happily chatting in the living room with my father and my aunt. I'm hiding downstairs like the pestilential freak that I am, eating a very late lunch, hawking massive loogies, and tapping out this blog entry. Our thanks to the two ladies for bringing over a load of food (soup, shrimp dinner, and doughnuts). Before I went downstairs to the dungeon, I saw Mom smiling; she's always happy to receive guests, and the good weather outside today is icing on the cake.

Emo and I had gone shopping at a ddeok-jip, i.e., a Korean rice cake house, where we bought a few packages of ddeok as well as one order of ddeokbokgi and one container of hobak-juk (pumpkin or squash porridge). I served Mom some ddeokbokgi and hobak-juk as a sort of second lunch; Emo was worried that Mom hadn't eaten enough at noon.

I can hear how noisy it is upstairs-- a happy noise. That's good. Whatever makes Mom happy is good.


UPDATE: I forgot to mention that Sean came over today; he was here when Emo and I got back from our shopping trip. He helped me prep some hospitality plates for the visitors: chopped Korean pears and US apples. The fruit, plus the ddeok we served, were our ambassadors today.

UPDATE 2: David came over later in the evening. He's been extremely busy, so almost as soon as he arrived, he crawled into a dark corner of the house and went to sleep right away, waking up to eat dinner. The poor guy could probably use about 36 hours' sleep, but he's got work in the morning.


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yikes

I stayed up until just past 7AM; the sun was shining brightly at the beginning of a new, beautiful day when I finally put myself down to sleep. I had set my alarm for 11AM, to give myself time to get up and make lunch for the crew. Instead, I slept through my alarm, got up at 12:40PM... and discovered that Emo had fixed lunch for herself and Mom, and Dad had eaten some oatmeal. What a terrible host I am.

And my lungs are still rattling.


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Sunday, October 18, 2009

a quick mea culpa

My buddy Charles writes:

By the way, there was something I wanted to mention after reading a recent post on your site: the term "imo" is used for *all* sisters of the mother, not just older sisters.

Yes, indeed. Mea maxima culpa.


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Mom and her sister at the food court of Pentagon City (Mom's in mid-chew)



UPDATE: I'm here with Dad, Emo, and Mom. We're about finished with lunch and getting ready to take Mom on a stroll. After that, we'll head back home: during our lunchtime discussion, we determined that we already have everything we need for bulgogi-making at the house. No need to shop for the proper beef or for any other ingredients.


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today's agenda

Mom's awake and out of bed, but still not washed. She's supposed to walk today, so we're planning to take her to the huge mall at Pentagon City, where we'll eat lunch and have Mom walk.

We might also need to go shopping for dinner supplies; I'm hearing rumors that Emo might want to teach me the proper bulgogi-making procedure.


UPDATE: Mom's feet are looking better today, and while she was in bed, she was more interactive than she had been yesterday.


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sisters

Today, I had the honor of providing dinner to both Mom and her sister, who arrived safely from Texas. Dinner for them was budae-jjigae, a stew I've made many times before. My aunt-- I'll call her "Emo" from here on in, per the Korean designation for an aunt who is the mother's older sister-- raved about it, which I took as high praise, since she's a talented cook. As happened with Mom, Emo wasn't familiar with budae-jjigae, a dish that gained popularity long after she and my mother had left Korea in the 1960s. Unlike some of the old-school Koreans in America, however, Emo was open-minded from the start, not blinking once when I told her what the stew was made of. Even Mom made a face the first time she heard it was a fusion of a traditional Korean stew and American junk meats: fatty hamburger, Spam, and hot dogs. The concept sounds disgusting, but the taste is surprisingly good.

Dad's dinner was leftover spaghetti from yesterday, plus leftover "caprese niçoise," my brother Sean's designation for the salad I'd made. Dad can't eat spicy, and I'd made the stew especially spicy by adding four jalapeños and four Korean gochus (seeds and all, of course).

Emo sat with Mom all afternoon and evening, often holding her hand and talking to her about this or that. It was the sort of care Mom needed, and which I'm currently unable to provide: my bronchitis is still rattling my lungs, so I'm still wearing a mask and washing my hands at an insane frequency. I hug Mom when I can, but avoid holding her hand and kissing her.

Mom's feet were swollen most of the day-- probably because of her Decadron, which looks, more and more, like the root of all evil. Decadron's main virtue is that it's a corticosteroid: it keeps the swelling down in Mom's brain. We had tried reducing her dosage a while back, but Mom's symptoms only seemed to flare up as a result. She's been back on the full dose ever since. Aside from its anti-inflammatory benefits, I see nothing good about Decadron: it's causing swollen feet and is deteriorating Mom's muscles. Her calves are now frighteningly thin. Emo and her family had lamented how gaunt Mom looked when she traveled to Texas. Now that Mom has regained some weight thanks to the sustained protein blast we've been giving her, Emo seems encouraged. It's a Catch-22 for us: if we lower the Decadron dosage to diminish the side effects, we risk brain swelling; if we keep the Decadron at its current level, we have to live with the side effects.

As a confirmed Texan, my aunt can take any amount of heat, but for her, 70 degrees is freezing. So we warmed the house up for her by a few degrees, and Emo bundled Mom's feet, which she (Emo) said also felt cold. I draped a shawl over Mom's shoulders to warm her up. Mom took our caring gestures in stride, as she usually does.

Sunday afternoon or evening, we'll be trying a new approach to walking: a trip over to the capacious Pentagon City, a mall with plenty of floor space for walking. Since the mall has a food court, we might just take a meal there. These sorts of outings tend to tire Mom out, though, so I don't think we'll be treating this like a typical people-watching adventure. We'll arrive, help Mom walk, hit the food court, and mosey on home. Or something like that.

The two sisters are happy to be reunited for a while. Emo's here until Tuesday; her stay is the same length as ours was when we went to Texas at the beginning of September. Symmetry.


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