Mom apparently woke up a little after lunchtime, but then closed her eyes and went back to sleep. She didn't actually get out of bed until after 3PM, and it's only now that she's gotten out of the bathroom and into the living room to eat lunch.
Lunch today is a mix of leftovers: leftover egg-and-cheese from Dad's brunch, leftover teriyaki chicken and rice from last night's dinner, and leftover miso soup from yesterday's lunch.
Sean came over and stayed with us a brief while. He had to look for some sheet music that he needed for a gig; in rummaging around some old drawers, he discovered his 1997 high school yearbook, in which we could see photos of a much, much fatter Sean. Sean laughed at the images of his former 200-plus pound self; he's around 180 pounds now, thanks to Atkins and exercise, which means he looks positively thin these days. Sean gleefully showed the yearbook shots to Mom, who had a quiet chuckle.
Dad and Sean have both stepped out the door; Dad's belatedly buying a new broom and some de-icing compound for the wheelchair ramp and deck, and Sean's gone because he's got a ton of things to do.
Given how late Mom is eating today, I doubt I'll be giving her much, if any, dinner. As for Dad's and my dinner... now that I've discovered how easy it is to make American-style teriyaki sauce, we'll be having teriyaki burgers tonight.
Saturday, December 5, 2009
Mom apparently woke up a little after lunchtime, but then closed her eyes and went back to sleep. She didn't actually get out of bed until after 3PM, and it's only now that she's gotten out of the bathroom and into the living room to eat lunch.
Friday, December 4, 2009
Dad found out, after speaking with the nurse who works with Dr. Boockvar at New York Presbyterian/Weill Cornell, that "one cycle" of Avastin equals two infusions. Earlier, I had written that Mom might be ineligible for the intra-arterial Avastin trial because she's already had so many infusions of Avastin. Happily, this turns out not to be true. She'll have had a total of seven or eight infusions by December 17; for six cycles, she'd have to receive twelve infusions. In other words: if she's ineligible for the trial, it won't be because of the Avastin she's already taken.
Mom woke up around 1PM, and didn't get done with the bathroom and shower until after 2:30PM. I treated her to a modified miso soup (extra tofu and seaweed added), boasting that this was her first meal in a week that didn't involve Thanksgiving leftovers (all of which had been slain yesterday).
Dad canceled one of his errands and took over lunch duty for me, helping Mom focus on eating. I, meanwhile, headed out back to mow up more leaves from the back yard. My intention wasn't to mow the entire yard; I simply wanted to vacuum up the rest of the leaves that had fallen from the Evil Tree.
Pastor Jeri arrived while I was outside finishing up. I've been hiding downstairs ever since, mainly because I need a shower.
Thursday, December 3, 2009
I checked on Mom twice before Dad got back from his shopping errands. The first time was at 6:30PM, and she was sound asleep. The second time was a little before 8PM, and when I went into Mom's bedroom, I saw that she was on her back, with one hand on her forehead-- a sign that she was slowly waking up. I leaned over Mom's supine form, and gently rubbed her upper arm to prompt her to open her eyes. She looked at me in the semi-dark; the only light was coming from the bathroom next door.
"You awake?" I asked. I thought I saw a slight nod, but couldn't be sure.
"You hungry?" Nothing. Mom stared at me.
"You thirsty?" Again, nothing.
"Let me get you something to drink," I said. "I'll be right back."
I went to the kitchen and prepped some pomegranate juice in the new "thermos cup" that Dad had bought for Mom. The cup has a screw-on cap and a large plastic straw; spilling the cup's contents is possible, but not likely, making it great for use in bed. I brought the pomegranate juice back to Mom, set it on her nightstand, then reached under her to raise her to a seated position. Mom held her neck steady as I tilted her forward, a sure sign that she was waking up and was also, perhaps, a bit stronger and more alert than she had been before her nap.
It quickly became obvious that I wouldn't be of any help if I stayed in that awkward position-- facing Mom, both of my feet on the floor next to the bed, my body bent double with my arms wrapped around her to keep her upright. So I kept Mom in position, and slid onto the bed behind her, sitting in the spot where her torso had been. I kept my left leg on the floor and tucked my right leg behind Mom. She now leaned against my stomach and chest, and my arms were free. It was almost as if Mom had become my blanket, or I had become her couch.
The thought was too cool not to voice. "I'm your couch now," I declared in a whisper. I handed Mom her drink, and she took it from me with no trace of hesitation or perseveration. She drank down a few good swallows of juice; I could only imagine how thirsty she must have been after her nap, and still nursing those bruises from her two falls earlier in the day.
I took the cup from Mom's hands when I saw that she was no longer thirsty. And so we just sat there in the dark, Mom leaning on me, me supporting Mom. I don't know how much time went by; maybe just a few minutes, maybe half an hour. Mom said nothing the entire time, but she seemed content with that state of affairs. Her eldest son was doing something that he had never done before, holding her in such a comforting way. As Mom's cancer has progressed, more and more of my inhibitions have been falling by the wayside. The more I realize the importance of simple human contact, of presence, the more easily such gestures come to me. Even eight months ago, I'd never have done something like this for Mom.
Eventually I broke the silence, determined to try evoking a response again.
"Do you want to get up?"
And this time, Mom nodded, her head bouncing like a bobblehead toy.
"Are you hungry?"
Another weak-but-bouncy nod.
So I put on her helmet, slowly helped her out of bed, and took her over to the bathroom. She was able to walk the short distance without collapsing, and seated herself on the toilet with dignified deliberateness. Toilet time is reorientation time for Mom; it gives her a chance to regain her bearings after any sort of transition, be it a move from the bedroom to the bathroom, or a move from the living room to the bathroom. We normally let Mom meditate a few minutes on the pot before suggesting that we move on to some other activity; in that spirit, I stepped out of the bathroom, retrieved Mom's Korean newspaper, and brought it to her. Then I stepped back out to allow her her privacy.
A few minutes later, I poked my head in the door and said, "Hey! How're you doing?"
Mom stopped reading and slowly looked at me. I expected her to give her usual nod, but instead she whispered, "I'm fine."
It was the first time she'd spoken all day. The rest of the evening was so much better for Mom-- dinner, TV, and mental lucidity.
Strangely enough, this wasn't the first time I had cradled someone this way. Several years ago, while I was living in Korea and before I'd gotten my peach of a university job, I was standing at a bus stop in the Kwanghwamun section of downtown Seoul, in front of the Sejong Cultural Center. The cold that night was brutal; all of us at the bus stop had bundled up like Eskimos.
I saw two old ladies bickering in front of me, obviously longtime friends, and just as obviously drunk out of their minds. One of the ladies saw a bus approaching and shouted that this was their bus, the one they had to take. The second lady didn't want to board, and when the bus pulled up to the stop and opened its front door, a weird wrestling match ensued. The rest of us stood and watched as this bizarre tableau played out like an off-beat comedy.
The first lady managed to put the second lady in front of her and wrestle her onto the front steps of the bus. But that was as far as the two ladies got: the second lady, far too drunk, simply collapsed. The bus driver, agitated that he wasn't able to keep his schedule, began berating both ladies, and the first lady finally managed to drag her friend back off the bus, which left without them.
Imagine the situation at this point: two old, drunk, bundled-up ladies on the street in frigid nighttime weather, one collapsed on the pavement, the other swaying over her like a palm frond, shouting and gesticulating... with about twenty people-- including yours truly-- standing at the bus stop and staring at them. It became alarmingly clear to me, though, that the second lady wasn't moving. Perhaps she was merely out cold (she did seem to be breathing); perhaps something was truly wrong with her. I didn't know, and at that point, I didn't care. Someone had to do something, and no one else was moving.
While the first lady continued to tug drunkenly at her friend's arms and clothing, perhaps not even realizing that the second lady was down for the count, I stepped onto the street, hooked my arms under the second lady's armpits, and dragged her back to the bus stop. She proved to be heavier than she looked. The first lady was no help at all: she ignored what I was doing and continued tugging and punching (!) at her friend, demanding that she get up.
And so I found myself sitting on the cold sidewalk, my back against one of those trees that you'll find lining the streets of downtown Seoul, an old woman sacked out in my lap, and likely losing heat through her skin thanks to the alcohol. Worried that she would start to freeze, I took my own coat off and draped it over her, using one arm to ward off the inebriated blows of her friend. I turned toward the cluster of onlookers, beckoned to a young lady, and asked her to call 119, the Korean equivalent of 911.
The ambulance took a few minutes to respond, so I sat with this lady leaning against me, using my body to heat her from behind and hoping that my coat was trapping the air in front of her. At first, I had to spend my time both warming the lady and deflecting the wildly inaccurate punches of her drinking buddy, but eventually the first lady calmed down as she realized that two things were happening: first, her friend wasn't moving; and second, this foreigner was actually trying to help. By the time the ambulance arrived, the first lady was positively nice to me, telling me that I didn't have to do what I was doing. The paramedics took over from there, loading both ladies into their tiny minivan, then trundling off to a nearby hospital.
And that was that. The only strangers who got involved were me and the young lady I recruited from the crowd. Everyone else had just stood there, gawking.
I was reminded of that amusing night in Kwanghwamun while I sat with Mom on her bed earlier this evening. In the dark, with Mom in her blanket and with me acting as her couch, warming her from behind, I pressed my cheek against her cheek and imagined-- wished-- that my touch could dissolve the cancer in her head.
Here's the link to Super-Selective Intraarterial Intracranial Infusion of Avastin (Bevacizumab).
One scary research criterion on that page says the following:
No chemotherapy for six weeks prior to treatment under this research protocol and no external beam radiation for eight weeks prior to treatment under this research protocol.
Given how aggressive Mom's tumors are, we know that it takes only eight weeks for a tumor to grow to the size of the original mass in Mom's head. Six weeks without any chemotherapy? No Avastin, nothing? The wait alone might kill her.
Another likely obstacle to entering this clinical trial:
Patients must be able to understand and give written informed consent. Informed consent must be obtained at the time of patient screening.
It's unlikely that Mom would be able to understand what this trial is all about, let alone consent to participate in it. And Mom might already have failed one of the exclusion criteria:
Patients previously treated with more than 6 cycles of Avastin at 10/mg/kg.
She's had a lot of Avastin at this point-- well more than six cycles' worth, though I'm not sure of the specific dosage.
All the same, we'll see what the doctors in New York have to say. Maybe Mom can be a candidate for Phase II trials... but the time frame given for Phase I is three years. Mom can't wait that long.
Today should have been an uneventful day, and for the most part it was. Today was Mom's IV infusion day, and we had to leave home early. I grudgingly woke up at a single-digit hour after having about four or five hours' sleep; I showered and prepped and went upstairs. Dad and Mom were already out the door, and were slowly working their way down the wheelchair ramp and over to the van. The drive to Prosperity Medical Center was nothing special; traffic was great and we arrived at 10:45AM, a half-hour early for Mom's 11:15 Avastin-and-carboplatin appointment. I told Dad I'd drop him and Mom off, park, and buy a late breakfast for them. Dad said OK; I dropped the parents off at the building's street-level entrance, then went to park.
I quickly discovered, however, that the entire parking deck was full; as I wended my way upward, I saw that cars were streaming down from the deck's top level-- never a good sign. This is the first time that I had seen the parking deck this full; I zigzagged back down to the street level and tried the handicapped spaces next to the buildings, but they were full, too-- not surprising at a medical center.
It was becoming obvious that my simple plan of parking, buying breakfast on the first floor, and ferrying it up to the fourth floor wasn't going to work, so I took off down Arlington Boulevard. After about five minutes of driving, I realized I was near Lotte Mart in a wayward pseudopod of Koreatown (most of Koreatown is in Annandale, not Fairfax). I texted Dad that I would find food for him and Mom there, but that he'd have to meet me at street level because of the parking situation. When it comes to Korean food, Dad is sorely limited in what he likes, so I bought some Dad-friendly seafood fried rice and some mandu (Jpn. gyoza-- dumplings or potstickers). Dad met me outside at 11:45 and told me that Mom had only just been taken in. So despite having arrived 30 minutes early, the parents had had to wait nearly an hour before they were seen. That office is truly horrible.
I had a few hours to kill, and hadn't bought myself anything to eat, so I trundled back down the street and happened upon a Red Lobster, where I helped myself to a guilty pleasure: fried clams. By the time I got back to the medical center, around 12:45PM, the parking deck had cleared out for lunch, so there was no trouble going up to the top level and finding a spot. I napped there until I got the call from Dad to pick him and Mom up.
Mom seemed more alert than she had been during the trip over. She was still entirely nonverbal, but she was both more responsive and more able to comprehend what I was saying. Earlier in the day, when I had dropped the parents off in front of the medical building, I had asked Mom to unbuckle her seat belt in preparation for her transferral to the wheelchair. Mom stared at me, then nodded, but did nothing. This was disconcerting, because up to now, she would always unbuckle her belt whenever the minivan's side door opened. Today, though, she stared at me as if she hadn't a clue what I was saying. In the afternoon, however, Mom nodded "yes" and "no" to various questions, doing so in a manner that reassured me that she had woken up from her stupor somewhat. When we finally got to the driveway and parked, I once again opened the van's right-side door and asked Mom to unbuckle her seat belt. This time she did as I asked, much to my relief.
None of the above was particularly exciting or stressful, but what came next was. Dad got Mom out of the van and held her hands while she walked weakly up the driveway. I went ahead of them with the intention of opening the gate and picking up some of the garbage that had flown out of cans blown open by today's wind. Suddenly I heard a sound, and turned around to see Mom sitting on the asphalt and Dad struggling to pick her back up. "She just fell straight down," Dad said. I sympathized: the same thing had happened to me a couple months ago while I was walking Mom in Fort Hunt Park. When Mom falls like that, it takes only half a second for her to hit the ground. It takes a quarter-second for her guardian to realize what's happening, then another quarter-second to try to react in time. Thus far, that's been impossible. None of us has ninja-like reflexes. Still, it makes a caregiver feel guilty when they're unable to stop something right in front of them from happening.
Dad picked Mom up and took her up the wheelchair ramp. She made it to the sliding door, then collapsed again, banging her knee, and once again hitting her bum. I could hear her laughing at herself in a mixture of amusement and self-disgust; she doesn't like being this weak and helpless. What sane person treasures the loss of their independence?
Dad got Mom all the way into the dining room and sat her on a chair so that she could rest and have her shoes removed. He then got her into the bathroom, changed her out of her day clothes, and put her to bed. Mom nodded "yes" when Dad asked whether she had a headache (she's been having headaches with more frequency lately); because she was all banged up, Dad decided to address the headache and the body bruises with a Percocet. I also suggested that she take her Decadron before going to sleep; she gets four per day-- two when she wakes up around lunchtime, one at about 6:30PM, and one before going to bed around 11PM. I knew she'd be sleeping through 6:30PM today, which is why I wanted to make sure she got her dose.
Right now (6:03PM), Mom's fast asleep. She's been asleep since 4:45PM. I'll be checking on her at 6:30, then checking her again at 8. Dad's out shopping right now; the house needs to be resupplied, because tonight is the final night for Thanksgiving leftovers.
Poor Mom. This should have been a normal day, but the latter part of it turned out to be quite an adventure for her. Dad and I need to get her exercising; she's so weak in the legs. Even though we've taken her out as often as we can, it isn't enough: she needs to be doing the exercises that Dr. Royfe, her primary care physician, had recommended for her. Indoor exercise: another item for the checklist.
Wednesday, December 2, 2009
In an unusual move, Mom fell asleep while sitting at the couch tonight. We decided she should go to bed early, so we woke her up around 10PM, Dad gave her her meds, and then we escorted her to the bathroom for her evening ablutions and clothing change. Dad then tucked her into bed for the night.
Mom had seemed "out of it" for much of the day, though she became more alert when we arrived at Ulta for her brief pre-makeover session with Mimi. In my opinion, she remained more alert for the rest of the day, but she did seem less responsive overall. Dad thinks Mom improved temporarily while at Ulta, then worsened for the rest of the day. With Mom so unresponsive, it's hard to tell who's right.
We got her to walk up and down the wheelchair ramp three times upon our return home; we also worked on her lips (much better, but still needing treatment), and got her to do some breath work with the spirometer, once before dinner and once before bed. She needs all the exercise she can get, but as was true even before the cancer, she doesn't seem all that willing to put herself through the effort.
Mom has what appears to be two tiny zits on her nose; we're watching those carefully to see whether they transform into anything threatening. Hopefully, they'll remain innocuous.
Tomorrow, Mom has her marathon Avastin-and-carboplatin session, which will keep us out of the house for at least five hours. I've got to get to bed early so as to be up on time for this.
We happened to be watching the local news on the ABC affiliate for northern Virginia, WJLA (we know it as Channel 7), when a report about a new drug treatment for glioblastoma appeared. We were fascinated, but one very, very important piece of information was left out of the report. I kept hoping the reporters would divulge it, but this never happened.
Thinking we would be clever, we checked out the WJLA website to find the printed form of the report we had watched. The report, in its entirety, appears below. I challenge you to figure out what's missing.
On Your Side: Brain Cancer Vaccine
posted 12/02/09 5:45 pm
NEW YORK - Every year, 10,000 people in the U.S. are diagnosed with the most aggressive and most common form of brain cancer. Even after surgery, radiation and chemo, doctors say the tumor returns in 95 percent of cases. Researchers are testing out a new vaccine that aims to stop the cancer from coming back.
Peter Rauch was just about to celebrate his 70th birthday when he got the news: brain cancer.
"I thought maybe I was getting dementia or something like that," Rauch said. "I just didn't feel quite right."
He had a crainiotomy [sic], where surgeons remove part of the skull and cut out the cancer. The operation went well, but doctors are always concerned the tumors will come back.
"They infiltrate into the brain, and we can take out the majority of them, but there are microscopic cells that go into the brain that are very, very hard to treat," Ted Schwartz, M.D., a neurosurgeon at NewYork-Presbyterian Hospital, told Ivanhoe.
Rauch is testing out a new vaccine. It works by training his immune system to target and kill cancer cells.
"With new treatments like tumor vaccines, we can actually 'rev-up' the body's own immune system to target and treat those tumors," Dr. Schwartz explained.
In phase II trials, patients who got the vaccine were free of cancer for about 16 and a half months and survived nearly three years. Those who didn't get the shot saw their cancer progress six months later. They survived a little over a year.
"We've been doing this for many years," Dr. Schwartz said. "It helps to stave off disease, but is not a cure. Now, we have a treatment that potentially can increase the number of long-term survivors."
"I don't think I'm back to where I was before the surgery, but I'm getting closer," Rauch said.
So far, he's feeling good, and grateful for every day his cancer stays away.
Patients in the trial receive monthly injections for as long as the tumor has not returned. To be eligible for the vaccine trial, patients must be over 18, have a newly diagnosed brain tumor and have recently had surgery to remove it.
Shouldn't have been too hard to figure out. How could something so obvious be missing? How the hell are we, as Mom's caregivers, supposed to research the topic without this rather crucial piece of information? Wake up, WJLA!
As it turned out, Ulta wasn't that far away from home. We were worried about traffic on I-95 south, so we left home around 2:30, but traffic was fine and we arrived at Ulta a full hour early-- at 3PM.
As you saw in the previous post, Mom gamely sat for her preliminary styling session. The stylist, a Korean woman named Mimi, trimmed Mom's gray hair so that it would fit well beneath her wig, then trimmed the wig itself.
We'll be going back to Ulta on December 13 for a full makeover. Two ladies will be ministering to Mom.
We're off to visit Ulta, the cosmetics store, in a few minutes. Today's visit is, as I mentioned before, the assessment before the true makeover-- a chance for the cosmetics ladies to look Mom over and get a feel for what needs to be done with her hair, makeup, etc. The makeover will happen on December 13, the day of the Korean women's society Christmas party.
Ulta is located rather far away, so we'll be gone a few hours.
Efforts at rejuvenating poor Mom's lips are finally paying off: as of Tuesday night, Mom's lips looked a heck of a lot better than they've looked in almost two weeks. The live skin still needs to heal, but the dead skin is almost all gone. Repeated applications of a warm washcloth, followed by vitamin E or medicated lip balm, have done the trick. It may sound silly to make such a big deal about this, but Mom is extremely susceptible to infection in her current immunodepressed state. Any wound, however small, is cause for immediate concern.
It was Mom herself who helped with the exfoliation process. Earlier on Tuesday, her lips still looked extremely chapped, and this was because of the thick layer of dead skin still hanging on them-- especially on her lower lip. But at some point after I had given Mom her third washcloth/vitamin E treatment of the day, she must have decided to take matters into her own hands. After having stepped away for about twenty minutes, I came back to where she was on the living room couch and immediately noticed that her lips looked almost immaculate. Mom reacted to the delight on my face by smiling and even offering a hesitant chuckle: she could tell I was happy about something that had to do with her.
"Your lips look great!" I blurted. Mom smiled again. I could tell that she, too, was glad to have liberated herself from the oppression of chapped skin. This was one of those rare cases when her perseveration might actually have been a blessing. Normally, I'd worry about any sort of obsessive skin-picking behavior, but Mom obviously knew what she was doing this time around: she had successfully removed the large flakes of dry skin without further injuring her lips. For the past week, Dad and I had been using a warm, wet washcloth to soften the skin of her lips, and had been gingerly rubbing at them to scrape off modest bits and pieces. Afraid to cause bleeding, we hadn't been aggressive about removing the larger flakes, even when they had looked ready to come off. Last night, Mom took care of all that for us.
It's not over, of course: the condition of Mom's lips is now another item on an ever-growing checklist related to her health. As with the other items on the checklist, we'll be watching very closely for signs of any problem. And we'll be continuing the lip balm and vitamin E treatments as a preventative measure even after the last remaining lip wound has healed.
Tuesday, December 1, 2009
Mom's finishing up her lunch: Korean soup, apple pie, and fruit salad. She's alert and responsive, but definitely perseverative: to give her napkins is to invite disaster. She likes placing food on them, or compulsively using them to wipe everything except her hands.
Our campaign to heal Mom's lips also continues. She gets a combination of treatments at various times throughout the day: a warm washcloth followed by a very gentle exfoliating scrub, specially medicated lip balm, and applications of vitamin E directly from a pierced capsule. When Mom got out of bed, Dad's gave her a vitamin E treatment, and I just treated her again with more Vitamin E. Her lips look better than they did last week, but we've still got a long way to go before the chapping and cracking are gone, and her lips have truly healed.
I strained my back while trying to lift Mom into the car yesterday, so I'm fairly achy today. The news about my respiratory health is mixed: happily, my bronchial woes seem to have departed, at least for now, and I've regained almost 100% of my ability to smell and taste. But sadly, I wake up every morning with a stuffy nose and a bit of sore throat, probably because I sleep downstairs in our basement/family area (the dungeon), where it's a substantially cooler. The nose and throat problem usually goes away within the first hour or two that I'm awake, but it makes me wonder whether I should be physically close to Mom without my N95 mask. I've been wearing the mask less often, but haven't stopped wearing it altogether.
Because my health is moving along a generally upward curve, I think it's finally time to implement the blood pressure attack plan. More on this as it happens.
Monday, November 30, 2009
We were a few minutes late to the doctor's office, but the place was crowded and, because one nurse was absent, the office was running behind. Mom was eventually called back; we rolled her to her exam room, where she had her blood drawn and her vitals taken. Dr. Meister came in not long after. He didn't have much to say, except that he felt Mom had actually improved, clinically, since the last time he'd seen her. He asked Mom a series of yes/no questions, to which Mom responded with nods. I mentioned that Mom sometimes tended to nod "yes" to everything, but in this case, she really did seem to be following what was happening (as was true yesterday and the day before). "On previous visits, she seemed to be somewhere else," the doc said. This is entirely possible; if he had seen Mom during a brain edema flareup, then she would have seemed unresponsive or somehow "off" in her behavior.
I asked Dr. Meister what he thought might have caused Mom to sleep all day several Tuesdays ago; he said he didn't know, but felt it wasn't worrisome since the behavior hadn't been repeated. I wasn't satisfied with this answer, and reminded the doc that Mom's behavior had changed noticeably for the worse on the Wednesday after her long sleep. The doc ventured that it might mean the carboplatin wasn't working, but that we'd have to await Mom's next MRI results to know more. That won't happen until early January, after she's finished her 8-week Avastin and carboplatin regimen.
While we were waiting for the doc to appear, Mom's blood work results came back, and we were given a copy. Of note: a low red blood cell count; a low hematocrit; a low lymphocyte count (LY#) and number (LY%); and a high granulocyte count.
When the above figures are compared to the normal ranges for these aspects of the CBC, what we see is that Mom is currently immunodepressed, and very vulnerable to infection. All the more reason to be careful around her.
The depressed blood count might be seen as evidence that the carboplatin is indeed in Mom's system, but the doc confirmed that the drug is often "processed by the kidneys"-- i.e., peed out, as I had read, thereby reducing its effectiveness. He didn't offer an opinion as to whether NCI had made the right choice in putting Mom on carboplatin.
The doctor also said, rather cryptically, that he had "absolutely no comment" on the treatment regimen that we're looking into for Mom. He wanted to know, instead, whether we'd gotten Dr. Fine's blessing to pursue this procedure; Dad said that he had contacted NCI several times, but hadn't heard back from anyone on Dr. Fine's team. We reassured Dr. Meister that we wouldn't be doing anything without communicating fully with all the offices that currently care for Mom. We're not crazy enough to act so cavalierly.
Sean accompanied us to the checkup, then went his own way when it was over. I'm glad he was there. When we got home, David was inside the house, napping away. The poor guy needs to catch up on his sleep. Mom was a trouper throughout the whole ordeal; she had trouble getting back into the van, under the cold and rain, but otherwise, she gamely endured all the tests, and walked up the wheelchair ramp to the house.
Sunday, November 29, 2009
Mom took her time eating her "lunch," and it wasn't until after 5PM that David and I took her out of the house. By then, Dad had already gotten some of his list done, and it was dark outside.
We ended up taking Mom to National Airport instead of to a mall. We parked in a handicapped parking space next to one of the pedestrian bridges connecting the parking deck to Terminal B, and wheeled Mom away from the car and onto the concourse. We pushed her along and allowed her to people-watch a bit until we reached a counter where a lady was selling Rosetta Stone language learning software. She kindly allowed us to keep the wheelchair at her station while we took Mom for a stroll.
We probably walked a few hundred yards with Mom, though nothing like the 630-680 yards she would have done at Fort Hunt Park. Still, she walked farther than she had yesterday. After the walk, we got Mom back into her wheelchair (thanking the Rosetta Stone lady), wheeled her over to a bank of seats, parked her next to the last one, and sat down with her to people-watch. David got us some drinks and bought some Ritter Sport chocolate-- junk food that David remembers seeing back when we traveled through Switzerland together in 1991. No one ate any of the chocolate, for some odd reason. I asked Mom whether she liked being at the airport (after first quizzing her as to where we were: a hospital? a church? an airport?); she nodded. I then asked her whether this outing made her want to go shopping; she visibly brightened and nodded again. It definitely helps to give Mom a change of scene.
When Mom had had her fill of people-watching, we decided to head home. Getting Mom back into the van proved tricky; as Mom has gotten weaker, she has supported less and less of her own weight. David had to do a good bit of lifting and pushing to get Mom into the van's bucket seat. Mom tired herself out as well; she was huffing and puffing from the effort by the time we were ready to leave the parking deck.
We came home around 8PM. Dinner was once again leftovers, but with leftovers as awesome as ours, this wasn't a problem. For Mom, however, I elected to give her the rest of her Korean seaweed soup. She hadn't seemed all that excited about Thanksgiving leftovers for lunch, even though she did eat what I gave her. Over the next 90 or so minutes, Mom slowly downed the soup, often so distracted by the TV that she would stop eating altogether. I had to prod her to return to her bowl several times, but in the end, she finished everything on her own.
Mom's behavior during her late dinner reminded me that she had also acted strangely during lunch, as well as during yesterday's dinner: yesterday, she ignored her fork in favor of eating everything on her plate with a knife-- until I noticed what was going on, took away the knife, and replaced it with her fork. Today at lunch, she was plopping food onto her napkin (David caught this)-- something she had done on previous days as well. When it comes to Mom, every day gives us something new to think about.
David left sometime after 8PM to meet some friends. At around 11PM, Mom took the rest of her pills and suddenly seemed a bit nauseous. She didn't throw up, but she looked as if she might have wanted to. Dad gave her some anti-nausea medication to ease any symptoms. We've been lucky so far when it comes to the usual inconveniences that bedevil brain cancer patients. We haven't had to deal with out-and-out seizures, nor have we dealt with hair loss and vomiting. Mom's been quite stable in that respect. We're also lucky that Mom spends most of the night on her side: this is the ideal position if you have to vomit all of a sudden. I hope the day never comes when we have to deal with a choking problem. What a nightmare that would be.
Mom's fine right now (11:51PM as I write this); she's in the bathroom, and will be in bed soon. Tomorrow in the early afternoon, she's got an appointment with Dr. Meister, her medical oncologist-- a checkup to see how she's doing. The week I had taken Mom to the ER was the week we had tried contacting both Dr. Meister and Dr. Benson (her neurologist), but neither had been reachable. Tomorrow, at long last, Dr. Meister will be looking Mom over.
Overall, today wasn't a bad day for Mom. While she was far from her ideal level of strength and alertness, she still seemed very engaged during the time she was out with David and me. She enjoyed the post-Thanksgiving bustle of the airport, and even though she was a bit strange in how she handled her meals, she finished both lunch and dinner.
Today, the plan is that my brother David and I will take Mom out for a few hours, and Dad still stay home, cleaning the house. My prediction: Dad will do his best to accomplish a great deal, but in the end, because most chores and projects tend to expand in scope even as they're being done, he won't be able to accomplish even half of his to-do list. We've all experienced that problem before: we start down the list with the best of intentions, but a few hours later, we marvel at how time has flown by. I'd rather stay home and help out-- the wind we've had the past few days has driven more leaves off our trees-- but I think today's plan is already set.
I asked Mom to write her name in Chinese and Korean. For comparative purposes, I did the same myself. The results are below. It's said that, if you're perceptive, you can tell a lot about a person's state of mind from how they write-- a conviction widely held in Asia, and which expresses itself, somewhat differently, as graphology (I hesitate to call it "the science of graphology") in the West.
Top row: I wrote Mom's name, Kim Suk Ja, in Chinese (金淑子). Read it from top to bottom as a column. The next two columns, Mom (1) and Mom (2), are Mom's attempts at writing her own name.
Bottom row: I wrote Mom's name in Hangeul (김숙자), the 24-letter Korean alphabet.* Mom's attempt is next to mine.
You can look at the above and be saddened, I suppose, by the obvious deterioration in Mom's ability to write her own name, but that's only if you use a cancer-free Mom as the standard of comparison. Look more closely at the bottom Chinese character for "Mom (2)," and you'll see that Mom executed a nearly perfect "Ja," despite how clouded her brain is. Note, too, that her writing still manages to look more organic and natural than mine does: I write Chinese and Hangeul like a foreigner, and that's pretty obvious to trained eyes. Mom's strokes retain much of their Mom-ness. When I look at her writing, my interpretation of the script is: she's still in there. She's still with us. She's still fighting.
*Note to expats: if you're one of the people who say "I can't speak Hangeul," you need to stop that nonsense right now. Hangeul is written Korean; the word geul means "writing." Hangukmal is "Korean language"-- literally, "Korean speech" (mal = "speech, talk").