Mom's getting used to her new wig, which is the typical dark brown or black color I normally associate with older Korean ajummas, most of whom do their best to hide any hint of gray hair.
Seeing Mom with a full head of hair is a strange experience. Her actual hair, which is gray, is poking out from beneath the wig in spots; this spoils the effect somewhat, but the overall impression is powerful enough to bring me back to before April 16, when Mom would have looked something like the way she looks tonight. The wig is a reminder of more normal, less troubled days.
I don't know what the wig might be doing for Mom's self-image, but I hope that it helps her on some level. Whatever makes Mom happy makes me happy. Hell, if she wants to wander around town in sparkling purple clown shoes and a fluorescent orange necktie, she's welcome to do so, and I'll stand proudly by her side.
Saturday, November 21, 2009
Mom's getting used to her new wig, which is the typical dark brown or black color I normally associate with older Korean ajummas, most of whom do their best to hide any hint of gray hair.
We're taking Mom out to Old Town Alexandria to visit a Korean-run wig shop. This is another step in the slow process of Mom's makeover. The idea is that she'll get the wig today, then go to Ulta in the first week of December for an assessment, then go back to Ulta on the day of the Washington Korean Women's Society Christmas party for the makeover, so that she can be presentable that evening.
Parking in Old Town is horrible, especially at the intersection we're going to (King and Washington, at the heart of the city), so I'll be dropping the parents off in front of the store, parking elsewhere, then picking them up when Dad calls me.
Friday, November 20, 2009
Many thanks to Pastor Jeri for stopping by. Her kindness and empathy are always appreciated. Thanks as well to my brother Sean for stopping by and staying a while. Mom brightened when she saw him, just as she did when she saw Pastor Jeri.
A few minutes after Sean and Pastor Jeri left, Dad left to go shopping, and I took Mom out to the park (all credit to Dad for getting Mom ready to travel). I took Mom outside to the deck, but the moment she tried to descend the first step, her legs buckled. Luckily, she didn't sit down hard this time. I was able to get Mom back onto her feet, walk her down the wheelchair ramp to the Honda Civic, and drive her to the park. My brother David had called as we were prepping to leave; he was planning to be at the house in a few minutes, so we asked him to meet Mom and me at Fort Hunt Park instead.
David was there when I arrived. He helped Mom out of the car, and we took her for a shortened stroll-- probably no more than 340 yards, but it was enough distance and time to give Mom a taste of the remains of this beautiful day. Mom was weak and her balance was shot, but she managed to struggle along. On a positive note, David and I saw that Mom was more awake and reactive while outside. A neighborhood cat came toward us early in our walk, obviously unafraid of strangers. David and I leaned over to scratch it when it got close enough; we didn't allow Mom to do the same (and we refrained from touching Mom with our fur-tainted hands), but she was tickled to see such a friendly feline.
David went home after the park walk; he had to work later in the evening, so he wanted time to take a nap. Before we parted, he gave us a four-berry pie that he had picked up while in Emmittsburg, PA earlier today. As a result of all the food we've received, I won't have to do much when I prep dinner-- and maybe a tiny dessert-- for Mom.
Mom seems to be at a remove from the world today, which continues the downward trend we've observed since her massive sleep attack two Tuesdays ago. She used to be good about at least nodding yes in response to yes/no questions, but today it seems especially difficult to get any sort of response out of her. Asking her a question is enough to get her to look my way, but not enough to elicit further reaction.
Getting her to eat is becoming difficult, too, and this problem is only a day or two old. Mom stared at her Korean lunch after I'd placed it in front of her, and instead of automatically taking up her utensils and eating, she merely stared at the food. So I came around the bar and physically helped her to eat the first few mouthfuls of food, after which she began to eat under her own steam.
This was disconcerting and disheartening, and help isn't forthcoming. The only communication we've had from Mom's neurologist has been through the mail: his office sent us some paperwork to help us arrange for a speech pathologist to work with Mom. Actually talking to the neurologist has been impossible for two weeks. NCI, meanwhile, had told us to inform them of any changes in Mom during this eight-week carboplatin period, but when we tried to inform them of how Mom seems to have changed since two Tuesdays ago, they referred us back to Dr. Meister, Mom's medical oncologist. He, in turn, has proved to be extremely difficult to get hold of. My father has talked with him, but only after many repeated tries.
The above frustrations are what led me to take Mom to the ER last week. The ER did its scans, saw an edema, and reassured us that there was no evidence of stroke. While that was good news, there was little else positive that arose from the ER trip: no one there was willing to make a firm pronouncement about Mom's current mental and physical status, i.e., to say whether the carboplatin was playing a role in Mom's unreactiveness, or whether a problem like tumor growth had caused a worsening of the edema in Mom's head.
So-- frustration all around as my mom fades away. Those most in a position to do something seem too busy to care.
Mom has an appointment with her primary care physician, Dr. Royfe, on Monday. Here's hoping that he can enlighten us a bit as to what we're seeing and what can be done.
Our thanks to family friend/little sister/recent visitor Renée Molina, for her kind offer of a place to stay in New York if we do decide to take a trip up there. It's always amazing that help comes from so many different directions.
Dad, meanwhile, has talked further with NY-Presbyterian/Weill Cornell Medical Center, and is sending them a copy of the information we have on Mom. This means doctors' reports, MRI CDs, etc.-- a lot of info. Just as we have to get ready for the medical center, they have to get ready for us.
Thursday, November 19, 2009
Dad did some research and found a great article from NYP.org about the experimental work mentioned in the New York Times the other day. Excerpts:
Neurosurgeons from New York-Presbyterian Hospital/Weill Cornell Medical Center performed the world's first intra-arterial cerebral infusion of Avastin (bevacizumab) directly into a patient's malignant brain tumor. This novel intra-arterial (IA) technique may expose the cancer to higher doses of the drug therapy, while possibly sparing the patient common side effects of receiving the drug intravenously (IV) or throughout their body.
The investigative procedure — called super selective intra-arterial cerebral infusion of Avastin — has been successfully performed on five patients with promising results. Details of the first case are scheduled for publication in the next issue of Journal of Experimental Therapeutics and Oncology.
The researchers are currently enrolling patients for the Phase I study, which will test the safety and tolerability of this new method of drug delivery. If proven successful, New York-Presbyterian/Weill Cornell physician-scientists believe that this promising method may one day offer patients a new and better therapy for glioblastoma multiforme (GBM), a common type of brain cancer that has not responded well to currently available therapies. In addition, the authors believe that this technique may herald the birth of a new field of "interventional neuro-oncology."
"We believe that infusing Avastin directly via the cerebral arteries deep into the site of the brain tumor may help to kill off the cancer cells hiding within the tumor and adjacent brain tissue," explains co-author and study co-principal investigator (PI) Dr. John A. Boockvar, associate professor of neurological surgery at Weill Cornell Medical College and director of the brain tumor research laboratory at New York-Presbyterian Hospital/Weill Cornell Medical Center.
"We are combining the latest in drug treatment with a revolutionary delivery technique, which could potentially be more effective than currently available treatments," says co-author and co-PI, Dr. Howard Riina, co-director of interventional neuroradiology at New York-Presbyterian Hospital/Weill Cornell Medical Center and associate professor of neurological surgery, neurology and radiology at Weill Cornell Medical College.
Because of the blood-brain barrier (BBB), which prevents many IV-administered drugs from penetrating the blood vessel walls sufficiently in order to get into the brain, no one knows for sure if current drugs actually get into the brain after IV infusion.
"This new technique may be a way to get through that barrier and deliver higher doses of drug to the tumor with less toxicity to the patient," says Dr. Boockvar.
To deliver the drug, neurosurgeons direct a hair-thin microcatheter through blood vessels in the body, via the carotid artery running up the neck, and then into the smaller arteries deep in the brain. Upon arriving at the tumor site, a drug to open the blood-brain barrier is injected. After the BBB is temporarily opened — a window of time lasting approximately five minutes — the chemotherapeutic agent Avastin is injected directly into the malignant tumor.
Participants in the trial will be given varying doses of the drug in order to test which dose is best tolerated. Following this Phase I trial, the researchers plan to immediately begin a Phase II trial to test the technique's efficacy.
The current standard of care is to give patients with GBM the drug bevacizumab (Avastin) intravenously (IV) — delivering the drug directly into a vein. The drug works by slowing the growth of new blood vessels within tumors, cutting off the life-giving blood and then causing the cancer cells to die. In May 2009, the FDA approved Avastin for the treatment of GBM.
Study researchers are currently recruiting males or females, 18 years of age or older, with documented diagnosis of relapsed GBM, anaplastic astrocytoma (AA) or anaplastic mixed oligoastrocytoma (AOA) — two other types of brain tumors. The authors have no financial disclosures related to the study.
Whether Mom's tumors count as "relapsed" is open to question: if I understand "relapse" correctly, the tumors have to go away first before a relapse can be said to occur. Then again, maybe the appearance of a second and third tumor, despite ongoing therapy, is enough to qualify as a relapse. We'll have to find out whether Mom is even a candidate for this sort of research. I imagine she is, but we need to make sure.
Is a trip to New York in order? Dad's planning to call the medical center tomorrow. We need to start planning now, even if it turns out that we won't go. Timing is important here: Mom's current eight-week carboplatin regimen won't end until late December or early January; we won't be taking her to New York before that time, but if we do decide to enroll Mom in this trial, we plan to be on the road as soon as the carboplatin regimen is done.
We're back from Mom's Avastin infusion session. It went about as well as can be expected. Dad resolved some calendar issues with Dr. Meister's crew; NCI hadn't coordinated with Dr. Meister when they (NCI, that is) scheduled Mom's MRI and consultation. You'll recall that Mom is taking carboplatin along with Avastin; the carboplatin is the newest weapon in Mom's chemotherapy, and she's doing it for eight weeks so that NCI can determine its effectiveness on Mom's third mass.
With Mom becoming decreasingly verbal and increasingly perseverative, I'm not sure the drug is working at all. If anything, I expect we'll find that the tumor has grown right through the treatment and has become the size of the first two masses. Eight weeks is enough time for this to happen, as we've seen. If I'm wrong about carboplatin's ineffectiveness, I'll be very surprised; Mom's deteriorating behavior and condition both lead me to believe I'm right.
Dad has emailed NCI about the microcatheter treatment; we'll see what Dr. Fine's team has to say. Dad and I are in the midst of discussing whether we should get Mom some more aggressive treatment if NCI and Dr. Fine prove to be, as one commenter noted, more conservative in their approach to treating GBM. As always, the debate over quantity versus quality of life applies.
Mom's feet were hurting too much for her to walk yesterday. Her feet were swollen; I imagine that the swelling was the cause of the pain. She's gone a few days without walking, and that bothers me. Although Mom's been great about working with the spirometer, and has dutifully performed her squats and heel raises, the lack of exercise is a problem.
Today, Mom's getting an Avastin infusion and having more blood work done (as it turned out, Dr. Meister's office requested a CBC). We're going to try to get Mom walking today; if it's raining outside, we'll likely try inside a mall.
Wednesday, November 18, 2009
It's almost 5PM, and Mom's about done with her lunch, which took her some time to plow through. Pastor Kim came over a bit before 4PM and stayed nearly an hour; our thanks for his visit.
UPDATE: My thanks to Melinda Mason, from church, for her very kind card.
As of 11:15AM, when I checked on her, Mom was awake. As normally happens, however, she wasn't ready to get up. The process is laborious for her; simply moving from a horizontal to a vertical position can make her dizzy, and the cocktail of meds in her system doesn't help matters.
Dad's away at his meeting with the Ulta staff; he thinks he'll be back around 2PM. Today will be one of those rare days when I will be responsible for Mom's waking/rising process, which takes her from her bed to the bathroom to the living room couch (or the kitchen bar).
I still wear a mask around Mom. Yesterday's flirtation with the reacquisition of my senses of smell and taste appears to have been a temporary thing: I'm back to living in a world without scent or savor. All the more reason to wear the mask, since I don't know for sure what's got me in this condition. I'll also be working in close proximity to Mom today, so it'll be essential to protect her from any stray microorganisms.
11:45: I just checked Mom again. Same deal: she's awake, but not ready to leave her bed quite yet. I'll check her once more in half an hour.
UPDATE, 12:50: Mom's ready to get up (she's on her back and staring at the ceiling), but Dad just got home, so I guess he'll be taking care of Mom.
Dad's supposed to visit a place called Ulta, a chain store that deals in cosmetics, makeovers, and the like. This is toward the fulfillment of a promise made to our family by Tony Barnett and his wife. Mr. Barnett is a Home Depot manager who was involved in the construction of our wheelchair ramp. His wife works for Ulta, and after having heard about our situation, she promised Mom a free makeover session. Dad will be driving out to confirm the particulars, which will also involve getting Mom an appropriate wig to help her feel more human.
The Ulta errand happens at noon. Later in the day, we're to receive a visit from Pastor Kim, who has graciously found time in his busy and ever-changing schedule for Mom this week.
And that's all we've got on the calendar for tomorrow. Ah, yes-- we do need to get Mom a-walkin' in the park.
Tuesday, November 17, 2009
The only distinct utterance I heard from Mom today was a whispered, "What time is it?" in response to a question about whether she wanted to watch TV. Mom often looks at the nearest clock to determine whether it's the proper time to do something. Whenever I ask her whether she's ready to eat dinner, for example, Mom will glance at the clock on the small table next to the couch, near the front door, before turning to stare at me (usually without answering "yes" or "no"). The same is true when I ask about lunch, or about whether she's ready to head off to bed for the night.
Mom was supposed to go walking today, but she's been in a bit of pain ever since her fall the other day. She's also been weaker and more off-balance than usual; with Dad away for an eye appointment, I decided that I didn't want to try walking with Mom alone. Were she to fall, there'd be only one person to stop her from hitting the hard ground outside.
So Mom's had an easy day, spent mostly on the couch. She spent a good part of the afternoon napping, making up for the sleep she missed this morning because of her 10:45AM appointment. She's watching the Korean news right now; Obama's done with China and has arrived in Korea, where he doesn't have to worry about courting controversy: President Lee Myeong-bak isn't expecting Obama to bow low to him, as happened when Obama met Emperor Akihito in Japan.
Here's hoping that we can get Mom out to the park tomorrow.
Our thanks to Mrs. Eleanor Fina for pointing out this New York Times article about the experimental use of microcatheters to deliver Avastin directly to tumors in the brain, thereby sidestepping the blood-brain barrier. I doubt this therapy will be available for Mom in time to do anything useful at this stage of her cancer, but if it turns out that NIH is conducting its own clinical trials, we'll see about signing her on. The main issue appears to be one of safety: how safe is it to inject a drug like Avastin-- with all of its hazardous side effects-- directly into the brain? Initial results look good, but there's more testing to be done. In the meantime, tumor reaction to this direct attack has been drastic, with tumors just about disappearing under the onslaught of so much Avastin.
Side note: the NYT article lists many of the glioblastoma multiforme statistics with which readers of this blog have become familiar. I hope my readers won't be thrown off by some of the numbers. For example, the article says that the median survival time for glioblastoma is 15 months; this stat probably includes younger, healthier GBM patients, which is what bumps the average up from the stat I've been citing. 13 months is the median survival time for Mom's age group.
Dr. Meister, whose timing is never good, called us just as we were leaving for Mom's 10:45AM appointment with Dr. Mirali. He seems to think that the results of Mom's blood work were good: the glucose level, while still elevated, was much lower than it had been.
Mom's blood count was also normal-- a result that Dad interpreted positively, but which made me wonder whether Mom had been peeing out the carboplatin. One of the disadvantages of carboplatin is its slow absorption rate into the body, which means there's a chance that it can come right back out despite the intravenous infusion.
Mom's slower this morning than she had been yesterday. Yesterday, she got out of bed rather late, but was occasionally verbal and generally alert. Today's slowness might be attributable to the fact that she had to get out of bed so early. Morning appointments tend to throw her rhythm out of whack.
Mom's with Dr. Mirali now, and I'm once again outside in the van, waiting for the parents' return. I suspect that the appointment won't last long; if the infectious disease specialist, Dr. Wheeler, already dismissed the lump as nothing to worry about--
--and just like that, Mom and Dad came back out as I was typing the above sentence. As I figured, the appointment didn't take long: Dr. Mirali says we need to do nothing more than watch the lump.
Righto. We're on our way home.
Monday, November 16, 2009
We took Mom out to Mount Vernon Hospital this evening. It wasn't anything urgent; both Dr. Royfe (Mom's primary care physician) and Dr. Meister (Mom's medical oncologist, the doc managing her Avastin and carboplatin) needed blood samples for blood work. This week, we were able to kill two birds with one stone: the samples given tonight will be used for both sets of blood tests. This doesn't normally happen: both docs are operating on their own schedules, which sometimes means that Mom has to give blood twice as often as usual (by "usual," I mean once every two weeks). The docs also tend to request different batteries of tests, which means that each doc needs a different set of blood. This time, however, one doc's tests were essentially the same as the other's, with only a few additional items.
Mount Vernon Hospital is only five minutes from our house; the drive there occurred in the dark: days here are short now, and by 5:30PM, it's effectively night. When we started back home, I opted to take some back roads that would lead to the George Washington Parkway. On the way to the parkway, we passed a deer that had just been hit by a van in front of us. The animal was lying on the ground, but was still moving as we passed it. The van that had struck the deer had pulled off the road; I assume the driver was calling the authorities. Deer are an occasional problem where we live; despite being so close to Washington, DC, we have plenty of green spaces, and the human population density prevents hunters from culling the deer population. Accidents like this will happen; I don't blame the van's driver, especially since this happened in the dark. Can't say that I blame the deer, either; it was simply doing its deer thing.
In other news: Mom's got her appointment with Dr. Mirali, the plastic surgeon who worked on her scalp, in the morning; our family friend Mr. James will be visiting in the early afternoon, and Dad has an eye appointment not long after. Tomorrow promises to be busy.
Ah, yes-- two personal notes: (1) I temporarily regained my senses of smell and taste, but only very slightly; (2) I managed to do a bit of leaf collecting. After the massive amount of work I'd done over a week ago, today's labor was easy. When I was finished, it was a relief to see both the deck and the driveway nearly leaf-free. This state of affairs won't last, of course, but in life you have to take what you can get.
Mom was fast asleep until around 12:30; I've been checking on her since 11:15. She's awake now, but still not out of bed.
As Dad has noted, Mom's waking-up process entails several distinct steps. She spends the entire night on her side, but as she drifts toward wakefulness, she tends to roll onto her back. After that, Mom begins to bring different parts of her body out from under her blanket, a bit like a butterfly emerging from its chrysalid shell.
When I checked on Mom after she had awakened, I saw that she had regressed, pulling her bedsheet over her face like a shroud. I gingerly stepped into the bedroom and tapped her elbow. For about twenty seconds, there was no response, then Mom suddenly ripped the sheet down and stared at me with her eyes bugged out in a comical glower. I laughed. Mom laughed.
And then Mom closed her eyes and went back to napping, not quite ready to get out of bed.
On Sunday evening, Mom lay on the living room couch. We had angled the couch so that Mom could watch TV. I sat on the floor next to her for much of that time, holding her left hand with my right, my fingers laced in hers. As I had done on many other occasions, I bounced my hand gently, and could feel Mom weakly matching the rhythm as we both watched Food Network broadcasts. I turned around to talk to Mom on several occasions, asking her yes/no questions to which she could nod or shake her head.
At one point, I noticed that she was staring at my hair, which had grown in quite a bit over recent weeks. Back when I was bald, I sometimes let Mom feel my scalp-- anything to allow her a tactile experience. Feeling my scalp sometimes made her laugh; with that in mind, I unlaced my fingers from Mom's hand and placed it on my now-furry head, then turned toward the TV and pretended to watch it. I was curious as to what would happen next.
Mom's hand sat limply on my skull for a few moments, then came to life, running through my new hair, which was now long enough to be soft instead of bristly. Her fingers traveled slowly and tremulously over my scalp, expressing a genuine emotion-- not so much curiosity as care. After a few moments, her hand crossed over to my left ear and stroked it, radiating a comforting, maternal warmth. The tenderness of Mom's touch was indescribable: however much the cancer and the surgery might have mangled her ability to think and feel, her love remained unfogged by disease. It was simple, pure, fulsome.
I almost cried then, as Mom's hand stroked the side of my head and the TV droned on. Over the past seven months, cancer has whittled my relationship with my mother down to its essence, leaving no more room for pretense. Mom doesn't speak much anymore, so all that's left to us is the language of eyes and palms and fingertips. I knew that she was telling me something through her tender, deliberate touch. I can only hope she understood my answer-- I love you, too, Mom-- as I placed my hand on top of hers.
Sunday, November 15, 2009
The shadows lengthened before I had a chance to do any leaf collection today. Instead, I drove up with Mike and his kids to see Mike's parents. After that visit, we drove back to my parents' house and took Mom out, together as one big family, for a walk at Fort Hunt Park. Mom did pretty well, chugging along nicely, and was far more alert and reactive than she had been yesterday. She wasn't very verbal, but Dad said that she had spoken some words when he'd quizzed her earlier in the afternoon, in my absence.
After the walk, I headed home with the parents while Mike and his kids drove back home, which is about an hour south of Alexandria. Meanwhile, when we got home, Mom insisted on climbing the steps instead of walking up the wheelchair ramp. Once we were indoors, I noticed that Mom was back to her old perseverative ways: she began compulsively wiping the kitchen counter with her hands. We eventually got her onto the couch; her bum still hurts a bit from yesterday's fall, so we've got her lying down and watching TV.
Mike's father is doing a lot better. He's looking and sounding stronger, and it's good to see that he's no longer bleeding profusely from the stitches on his face (the stitches were from a procedure performed the day before his cardiac crisis; the bleeding was a result of the Coumadin he'd been taking). His grip was strong, his balance looked good, and his demeanor was very positive. I left the house happy that Mike's dad had been properly stabilized. He's got followup appointments to look forward to, so he's not quite out of the woods yet, but things are looking are a lot better now.
My brother David will be here around 7PM; tonight's dinner will likely be leftovers. I hope David doesn't mind.
More than a week ago, before the current edema-related troubles started, I saw Mom in the bathroom, standing at the sink-cum-vanity counter in front of the wall-size bathroom mirror. She was gingerly feeling the edges of the depression in her head, the area that's been missing a large piece of bone since May. Sometimes she itches there; I've seen her gently scratching that part of her head, especially as hair has been growing back on her scalp. On that particular day, though, she seemed to have some other purpose in mind as she palpated the area.
So I asked her what was wrong. She turned slowly toward me, indicated the crater, and whispered, "Sunken."
It was a heartbreaking moment. It showed that Mom knew enough about her own condition to be saddened by it. I've wondered, both before and after that moment, whether (and how often) Mom has dwelt on her worsening condition. It's often hard, these days, to get an accurate picture of what life looks like from her perspective, and because she's largely nonverbal, she offers us few clues as to her internal state. This utterance-- "Sunken"-- told me a lot. It told me that Mom still had her pride, and didn't want to appear before her family, friends, and relatives looking the way she does. It told me that she was self-aware enough to be able to contrast her present condition with how she used to be.
I suppose I should be happy that the cancer and the surgeries have taken away her ability to feel anything too deeply. Were she afflicted with end-stage pancreatic cancer instead of brain cancer, she'd be aware enough to suffer mightily through the experience.
But Mom can still compare her present with her past, which is something the rest of us can also do. I, for one, still catch myself thinking back to recent months, before April 16, when Mom was amusing me with her English-language quirks, such as her inability to remember and pronounce the name of that home furnishings store, Bed, Bath, and Beyond. That used to make me laugh. I remember that we celebrated the parents' 42nd anniversary at a pizzeria called Faccia Luna, and that Mom enjoyed herself there. I remember how recently it was that Mom was master of our kitchen, not me. Images of so many things, so many recent things, arise unbidden; perhaps this is true for Mom as well. And perhaps when she remembers those things, she feels the same pang I do every time I stray from focusing on the exigencies of the present moment.
My buddy Mike will be driving up to northern Virginia with his kids after they eat some lunch. He's going to swing by and pick me up so that we can head over to see his parents. I'm not sure whether Mom will be awake by the time we get back from Mike's parents' place, but if she is, then Mike and company will likely stop for a short while to say hi to Mom. Whether she's in any condition to receive visitors is an interesting question; based on how unreactive she was yesterday, I have my doubts.
In any case, once I'm back home, it's likely I'll step out and do some of the leaf collection that I hadn't done early last week. That might take a couple hours, and will carry me over to dinnertime. So I'll finish up the day by prepping dinner, cleaning up afterward, doing some of the usual blogging and emailing, and helping with any other chores, such as floor cleaning and laundry.
Not much of a plan, I realize, but there we are.