It took me well over an hour and a half to feed Mom her dinner tonight. We had leftover bulgogi, leftover rice, and a fresh cucumber-tomato-feta salad. Mom seems to have lost almost all of her ability to feed herself; if no one does it for her, she stares off into space or watches TV while her food just sits there, untouched.
Strangely enough, Mom appears to want us to feed her; when she's lucid and able to answer yes/no questions, she'll nod "yes" to the question, "Would you like me to feed you?" While this expression of dependence provokes tender feelings, it also stands in sad contrast to how Mom was a merely few weeks ago, when she would chow down her food all by herself, finishing in mere minutes if she was hungry.
I did my best to alternate bites: meat, rice, salad, all in sequence, in an effort to keep dinner pleasant for Mom. She nodded tiredly to some of the questions I asked her, though there was no way of knowing how well she understood what I was saying.
I've often wondered what it must be like to live in Mom's mental fog, to feel myself detached from everyday goings-on, to be so perceptually and conceptually blunted as to lose the ability to grasp the meaningfulness of this or that activity. I want to understand what Mom is going through, but I can't. There's no window into Mom's consciousness; there's only what I can see... and what I can guess.
_
Friday, December 11, 2009
over 90 minutes
the neurologist's report
Dr. Benson looked Mom over this afternoon. His first reaction was that Mom seems to have lost weight, which is likely: months ago, she had sunk down to a very thin 109 pounds; she then puffed up to almost 130 pounds. Over the weeks that followed, she stabilized at a more appropriate weight since the last time the doctor saw her, probably somewhere south of 120 pounds.
The doctor also felt that Mom was exhibiting cognitive decline; she was completely nonverbal with him, and only haphazardly responsive to instruction, but he also saw that she was reacting to faces, gestures, and actions in a way that indicated situational awareness.
We told the doctor about Mom's decline since her all-day sleep episode from about a month ago. He said this might actually have been the result of a seizure. The only way to determine precisely what's going on in Mom's head, especially as regards how much her language centers have been affected, would be through a test involving the touching of a wire directly to the exposed brain to see how the brain reacted to electrical stimuli. As we all agreed, this option was out: Mom's blood count is too low for us to risk opening her up, which is another reason why we like the new clinical trial Mom has entered: the only piercing of the skin will occur at whatever point the microcatheter is inserted (most likely the femoral artery).
We brought Dr. Benson up to speed regarding the new treatment; he agreed that it sounded like a reasonable course of action, but he gave us a general caution about taking extravagant measures that would yield few if any benefits. We've promised to give him a pile of data: the 10/28 MRI images from NCI (he was supposed to get these, anyway), the MRI images that will be done on 12/17, and the news articles about Dr. Boockvar's and Dr. Riina's research into intra-arterial Avastin delivery. Dr. Benson is going to become much more involved with Mom's case after the 12/18 operation: barring a messy and invasive test, the only thing we'll have to go on will be post-operative MRIs and clinical evaluations of Mom's cognitive abilities.
The most important thing I learned during our visit to the doctor was that an intracranial edema, if it's in a person's head long enough, can cause permanent brain damage, much the same way that constantly sleeping on the same arm can eventually cause permanent nerve damage. Mom has been living with her edema for weeks, possibly months. What this means is that Drs. Boockvar and Riina might succeed in shrinking Mom's tumors, but there's a chance that Mom will still be as cognitively impaired as she is now. We won't know until the procedure's been done and the Avastin has had time to work on the cancer.
That puts something of a damper on our hopes for what the docs at NYP/WC can accomplish for Mom, but we have to remain positive: we don't know anything for certain yet, and it'll probably be sometime in January before we know more.
And that's when Dr. Benson wants to see Mom again: mid-January. He told us that he thought we were doing a great job of caring for Mom. I was glad to hear that. Before he left the room, the doc shook everyone's hand, including Mom's. She understood that this was good-bye, at least for now.
_
off to the neurologist
Our appointment with Dr. Benson, the neurologist, is at 3PM, so we'll be out of here around 2. I'll be interested in what he has to say after he examines Mom.
_
Thursday, December 10, 2009
busy weekend, busy week, busy Christmas
Tomorrow, Mom's got an appointment with Dr. Benson, her neurologist. On Saturday (the 12th), Mom's big sis is arriving from Texas, and about 30 minutes after my aunt arrives, Mom is going for a manicure. The following day, Sunday the 13th, Mom has her big makeover, just in time for the Washington Korean Women's Society Christmas party later that same day.
My aunt will be staying with us until the 15th; after that, we have a day to prep for our trip back up to NYC on the 17th. Mom's surgery will take place on the 18th, and assuming all goes well, we'll be driving back down to Virginia on the 19th.
That doesn't give us much time for Christmas prep, none of which has been done-- no tree, no cards, no cookies, nada. It'd be nice to do something memorable for Mom, something not slapdash and last-minute in nature, but finding the time and energy is going to be difficult.
The very next day after Christmas, we've got other relatives from Texas coming over; they'll be staying in northern Virginia a few days, I think. As a result, Christmas Day might end up being "Prep the House Day" as well. Heh.
_
whirlwind communion
Pastor Kim and our fellow congregant Beth Kline came over today to visit and administer communion... but communion happened in the narrow slice of time when I was downstairs tending to some laundry! Even Dad was marveling, afterward, about how quickly it went.
Still, our thanks to our guests for visiting. I learned a lot about horses and stables today.
_
possible static from NCI
We are, finally, hearing something from NCI regarding our new plan to take Mom to New York for treatment. As we expected, Dr. Fine's office has reservations about having Mom treated this way; they say they're worried about the necessity to open the blood-brain barrier, and about other possible problems. Personally, I think NCI is getting back to us way too late for there to be any meaningful discussion. In any case, Dad relayed NCI's reservations to Dr. Boockvar's office, and Dr. Boockvar himself responded in writing to assure us (and, perhaps, the NCI team) that the blood-brain barrier issue isn't a problem.
Whom to believe when you're in such a position and you aren't a cancer expert yourself? For me, it boils down to two questions:
1. If we allow Mom to undergo treatment X, are we killing her?
2. If we pass Treatment X up, can we say that we've done everything possible for her?
When these two questions are juxtaposed, all the other, more detailed, ethical questions arise from them. But upon these questions hang all the law and the prophets, if you will.
_
what care means
Allow my dad to demonstrate the meaning of care:


The above two pictures illustrate the preferred method for picking Mom up so that she can stand on her own. Trying either to heft her by her armpits, or to lift her by hugging her rib cage, only causes her pain.
You may also have realized that the above-illustrated method both looks and feels a lot like a loving embrace.
Mom had the same thought. What the photos don't show is that she held that position longer than she needed to, and patted Dad on the back.
We love you, too, Mom.
_
Wednesday, December 9, 2009
from yesterday: Dr. Boockvar's white board, showing Mom's cancer (shaded circle near center of brain)
COMMENT: Dr. Boockvar drew the above to illustrate what he saw happening with Mom's cancer based on the October 28 MRI done at the National Cancer Institute. His circle is close to the sites for both the first and second growths. Now that I think of it, he made no mention of the third growth, the one caught by Dr. Fine (who was reviewing this same MRI series) after the NCI radiology department missed it.
Is it possible that Dr. Boockvar missed the third mass, too? It must be hard to see if the pros can miss it. We may need to make sure that Dr. Boockvar's team is fully aware of the third growth, which would have gotten larger since 10/28, assuming-- as I do-- that the carboplatin hasn't done a thing for Mom.
But what bugs me about the above diagram is that it also seems to indicate that the Avastin has been less than spectacular, despite rhetoric to the contrary. The growth shown above is right where we thought the Avastin had been doing the most good (this is how the 10/28 MRI was interpreted for us at NCI: the Avastin had been mopping up the remains of the first and second tumors). It would be nice to have both doctors, Fine and Boockvar, in the same room so we could interrogate them about how they're reading and understanding these MRI images.
_
awake at 4:50PM
Mom was stirring around 3PM today, having taken a long rest after her ordeal over the past two days. Ever since April, Mom has been sensitive to shifts in her world: new people, new places, new activities outside of her comfortable routine-- these things all throw her off and tire her out.
When she officially woke up at 4:50PM, she had warm hands-- always a good sign. I saw Mom when she was seated upright on the edge of her bed. She dutifully wrapped her arms around Dad's neck so he could help her stand up from the bedside. Dad says he treasures that embrace.
Mom's supposed to have a visitor this evening at dinnertime: Mrs. Burns is coming over at 7PM. I hope she likes choucroute alsacienne!
UPDATE: I just heard terrible news from Dad: Mrs. Burns's mother-in-law just passed away. There's still a chance that Mrs. Burns might come over tonight, but as Dad said, we'd understand if she chose to focus on her own family in this time of loss. Our sympathies and condolences go out to the Burns family.
_
under two blankets
It's getting colder in the basement, so last night I threw an extra blanket on my bed. Our new central heating system keeps the downstairs at tolerable temperatures if you're up and about, but when you're lying in bed and not moving around, you can feel the cold seeping in through the walls.
The result was a much better quality of sleep than I've had in a while. I might have to stick with this two-blanket method for the duration.
_
home
We're safely back, and all the heroes who took part in a spectacular day have gone their separate ways-- David to his apartment, Renée back to Queens, Dr. Boockvar to another operation, and the rest of us back to the homestead in northern Virginia.
We've come back with fantastic news: Mom now joins about twelve other people (six more than the New York Times article mentioned) in Dr. Boockvar's and Dr. Riina's intra-arterial Avastin delivery clinical trials. Mom has, in fact, been booked to have her surgery on December 18th-- a mere ten days from now. So we'll be taking Mom back up for an MRI on the 17th, and her procedure is to be done very early in the morning on the 18th.
Thus far, none of the twelve patients has suffered any ill effects from this new method for delivering Avastin directly to a tumor site. One patient died, but this was the result of a combination of factors unrelated to the technique: (1) the patient's tumor had spread to the brain stem before treatment had begun in earnest, and (2) the patient had contracted pneumonia (see the original New York Times article that started us on this treatment path). The overall outlook for all the other patients in the trial has been encouraging.
We do still have to worry about the potential risks of such an operation. Any invasive procedure brings with it the chance of internal hemorrhage-- an especially frightening prospect where the brain is concerned. Also: Avastin is a potent drug, and as is true with all drugs, different people react differently to it. Might such a high concentration lead to some sort of brain damage, or to something worse? While such outcomes seem unlikely, based on the record of twelve patients thus far, there's always a chance that a later patient might not dodge the bullet. Keep in mind, too, that we're dealing with a very small pool of people from whom to collect data. It's still too early to be drawing general conclusions from current results, and this particular clinical trial is so new-- it started this past August-- that it's still in Phase I, i.e., the safety-verification phase. In other words, no one knows anything definite about the long-term effectiveness of the procedure.
So while I'm elated that Mom is now part of this trial, there's a knot in the pit of my stomach much like the knot that appeared when Mom first went off for her April 21 debulking surgery. Things ought to go very well, but there remains a chance-- Dr. Boockvar puts it at about one percent-- that something could go very, very wrong. Even though it's hard to argue with near-total tumor shrinkage, it would be criminal to paper over the potential risks.
I'm too tired to say much more right now; I need to review the audio of our meeting with Dr. Boockvar so I can blog later on about any other salient points. Suffice it to say that we all arrived home safely, and that Mom was, once again, a real trouper about the ordeal. She had to give a urine sample, have a blood sample taken, undergo an EKG scan and a chest X-ray, and endure, for a few minutes, the cold and wind of Manhattan in December. She spent most of the 8th starving: we fed her a large breakfast, but because we didn't realize how many tests she would be undergoing (these were all pre-operative requirements), we didn't feed her any lunch.
Renée very kindly hung out with us through the afternoon and early evening; her beau Ron also dropped by and met David. When all the testing was over and we had re-packed both our suitcases and ourselves in the minivan, we trundled over a couple blocks, bought food from a local grocery (Food Emporium), and chowed down, with Renée, inside the van. David had done some shopping as well: he surprised us with an assortment of tasty desserts, a move Renée described as "genius."
Eventually, we dropped Renée off by Bloomingdale's, and David took us out of Manhattan. Once we hit New Jersey, I took over and drove us into northern Maryland, after which David took over again and drove us the rest of the way home. The van was apparently a casualty in this trip: one headlight died, and the center brake light also gave up the ghost. Dad will be getting those repaired, and checking the wheels' balance (he sensed a great deal of vibration as we were cruising along) so that we can drive back up to NYP/WC safely on the 17th.
_
Tuesday, December 8, 2009
family at the hotel
Below is a pic from around 7PM, on the evening of Pearl Harbor Day. As you see, our family made it to the hotel just fine, thanks to flawless piloting by David and his nifty portable satellite navigation system (I drove us as far as south Jersey, after which David took over).
In the picture, you see Mom, very tired, watching TV. David, even more tired, stares blearily at the camera, while Dad is off in the kitchenette looking rather peppy.
We stuffed ourselves with dinner (much of it unfinished and now languishing in the kitchenette's fridge), and by 10PM Mom was looking exhausted. Attempts to get her to use the spirometer were futile; she was too tired to understand the device. After Dad got Mom changed and we helped her into bed, Mom went to sleep almost as soon as her head hit the pillow.
Because I was feeling so stuffed, I took a walk tonight, from about 11:35PM to 12:35AM, walking a total of 42 "short" blocks along York from E 71st to E 92nd St. I walked fairly slowly, so I doubt I did anything close to three miles, especially with all the time-stealing delays at many of the intersections (New York natives jaywalked when the streets were empty, which wasn't so different from what I've done while in DC at night). [UPDATE, 8:26AM, 12/8: the round trip was 2.2 miles, according to Google Earth.]
The stroll proved to be a fruitful information-gathering session, which gave me a small sense of this rather quiet and well-behaved part of Manhattan. The walk toward E 92nd Street tended slightly downhill; I didn't notice this fact until I began walking back to the Helmsley.
In terms of establishments, the axis between E 71st and E 92nd Streets was a mixed bag. There were restaurants and coffee shops of all different sizes and types, fruit and vegetable markets (many of which were open past midnight), a few bars, a handful of hair and nail salons; there were some laundromats, apartment buildings, schools, exercise studios, alternative medicine clinics, and other businesses. I saw at least one church. I discovered that our building was almost right next to Sotheby's, the famous auction house. I was also interested to note the number of dog-walkers who were out at that time of night: they were mostly women, and their dogs were mostly large breeds. I initially found it strange to see so many large dogs in such a crowded city (Seoul, by contrast, plays host to yappy little toy dogs-- often bought on a whim, and sometimes cast away soon after). But as I reflected on the situation, it occurred to me that the weather may have had something to do with what I was witnessing: who in their right mind would take a naked chihuahua out into the cold? Larger dogs handle the cold better; it made sense that I would see mostly large dogs on a cold night (though I still wonder why a New Yorker would bother to buy a large dog).
I also noted that there were, along that axis, at least three "duane reade" convenience stores, one of which (as David and I discovered earlier) lay just opposite the front entrance of our building. Whoever "duane reade" is, he has no respect for rules of capitalization: when his name is written out fully, there are no caps at all, but the logo for the store shows "DR," both letters being capitalized. Perhaps "duane reade" is large and contains multitudes, like Walt Whitman. We don't have any DR stores in northern Virginia, as far as I know, and maybe that's for the better. I'm not sure we simple Southerners could handle that much internal paradox.
There were also at least two 7-Elevens along the route I walked, both of which seemed to be open.
My overall impression of that part of Manhattan was that it wasn't Where It's At. I imagine there are downtown sectors that, as is true in Seoul's Kangnam and Chongno districts, never sleep-- but York Avenue from E 71st to E 92nd Street isn't one of them. Not that that displeases me: I'm not a fan of big cities to begin with, despite eight years in Seoul, and I don't mind a more sedate ambiance.
If it turns out that Mom is deemed trial-worthy, it's likely we'll be back in this part of town again, so it's good to know what's available in terms of food, shopping, and entertainment. Tonight's little reconnaissance mission yielded information likely to be of future use.
_
Monday, December 7, 2009
unexpected encounter with the ineffable
We ordered our dinner from the nearby Cafe Luka; their ad was inside the hotel room, and they were offering a 15% discount on all food deliveries. I mentioned in my previous post that the cafe didn't skimp on its portions, but at the time I wrote that entry, I hadn't eaten my dessert: I was too stuffed.
A couple hours later, however, I pulled my dessert out of the fridge (our room has a kitchenette): a thick slice of chocolate mousse cake. Hot damn, that was one of the best pieces of cake I've ever eaten-- silky, smooth, celestial (see how good it was? I invoked both heaven and hell in a single sentence). The cake is way too rich to eat again right away, but if you're ever in Manhattan and looking for a good dessert, I'd highly recommend the chocolate mousse cake from Cafe Luka. It's what myths are made of.
_
arrived, settled, dinnered
The drive to New York went well; traffic didn't get bad until right before the Lincoln Tunnel, which kicked our butt with an $8 toll. David did an expert job of navigating his way through Manhattan to our lodgings, which are known as The NewYork Presbyterian Guest Facility at the Helmsley Medical Tower. (Yes: Helmsley = Leona. That Helmsley. I hope that's not a bad omen.)
Mom held up well during the trip. She's been totally nonverbal, but has seemed more or less awake and aware. Dinner turned out to be huge; New Yorkers don't skimp on their portions.
The plan is to relax here for the night, check out in the morning, and drive home sometime after. Once we're done with the docs, we're going to try meeting up with our friend Renée, but a lot depends on how long the session runs. We've been warned that it might go at least two hours, which doesn't sound like a simple consult to me. But a two-hour appointment makes sense: Mom is going to be evaluated to see whether she's a proper candidate for the intra-arterial Avastin delivery procedure, so she may have to go through a few tests.
It's cold in the city, but that's no different from how it's been in northern Virginia. More later.
_
Sunday, December 6, 2009
slumber
Mom has been asleep since around 6PM tonight. Can't say I blame her. What worries me, though, is that she's had only one meal today, plus half a protein bar. She had her pills and vitamins this morning, and did a bit of spirometer work with Dad (she's getting weaker), but that was about it. Most of her waking time was spent staring blankly at the TV, and offering only the most wan of smiles to me whenever I tried talking to her while feeding her. While asleep, Mom has snored a bit. It's cute, but in her case, it's also an indication of mucus buildup. That, along with the possible jaundice/liver problem, will have to be checked while we're at NY Presbyterian/Weill-Cornell (I hope you won't mind if I abbreviate the center's name as NYP/WC from now on).
We'll probably have to force Mom awake tomorrow morning to pack her into the van. David came over this evening, and is helping Dad by copying all of our MRI CD-ROMs to give to the docs at NYP/WC. Dad's done as much prep as he can, for himself and for Mom, and I have to do some laundry, take out the house garbage, and make some other small preparations so we can be ready to shove off by 11AM tomorrow.
The next time I write something on this blog, it'll likely be while we're on the road, or after we've settled into our hospital campus accommodations.
UPDATE: Well, I spoke too soon. Around 9:55, only a few minutes after writing the above, Mom's arm moved to a spot above her head, indicating that she had awakened from her nap on the living room couch, where Dad had placed her earlier in the day. She still wasn't talking, but as happened the other night when I cradled her, Mom seemed more alert than she had been before her nap.
I knew she was probably hungry and thirsty, but I also knew she'd be going to sleep in her own bed around 11PM. With that in mind, I fed her a small container of yogurt, then helped her wash it down with some ice water from her nifty new travel cup. Because Mom was lying down, the cup's angle made it awkward for her to suck more water out through her straw, so once again, I tiled her up and ended up cradling her. From Dad's remarks when she saw her, Mom was delighted with her situation. Dad fed Mom her pills, and we eventually got her off the couch and over to the bathroom, after which Dad took over the rest of the bedtime routine.
After spending a lot of today on the verge of tears, I thought this was a good way to end the day.
_
fading
Over the past week, we've witnessed a perceptible decrease in Mom's responsiveness to us and to the world. Today in particular, Mom seems very detached from her surroundings. I placed her lunch in front of her and got no reaction, and even had to feed her the entire meal myself. She seemed more attentive while I was next to her and feeding her, but every time I walked away, she slipped back into her mental fog.
I also noticed a change in the color of Mom's right eye; the sclera appears to be darkening, possibly turning yellow. If it's yellow I'm seeing, this could indicate liver problems or even liver failure-- a distinct possibility given the terrible cocktail of meds that Mom ingests daily. We're leaving tomorrow to see the researchers in New York on Tuesday; we might be able to get Mom checked out right there. Maybe the docs will say I'm hallucinating, and that Mom's not having any liver problems. I hope I'm wrong about what's happening inside her.
We're puttering about the house, prepping for tomorrow's drive. Dad took the van out to get its interior cleaned; it's sparkling now, according to him. I'll be driving us partway up to NYC tomorrow, but my brother David will be driving the final section: I'm too much of a wimp to navigate in New York City. I did it years ago, and nearly got nailed by a car that blew by me. Once bitten, twice shy.
Mom's current Avastin-and-carboplatin regimen ends on December 17, when she gets her final dose of Avastin before her next MRI. I'm hoping that we have our consultation with Dr. Fine's team soon after that; it seems to me that the carboplatin hasn't done a thing for Mom, which in turns means that the third tumor has probably been growing freely all this time. I wouldn't be surprised to discover that the third mass had grown to the same size as the two previous masses. Eight weeks is all it takes.
It's not easy to watch Mom fading away like this. Not easy at all.
_
two articles
It was thanks to my buddy Charles, who left a comment a few posts ago, that I learned that the name of the drug referred to in my "How Not to Do Journalism" post is CDX-110. Armed with that knowledge, and with the name of the main researcher running the experiments, Dad was able to find two articles that provide plenty of detail about the properties of CDX-110, and the nature of the trials currently being done. The articles are linked below.
1. Can a Vaccine Prevent Brain Cancer Recurrence? (May 11, 2009)
2. Can a Vaccine Stop Brain Cancer from Occurring? (September 25, 2009)
Despite the similar titles,* these aren't the same article.
I should note that Mom's prospects for getting into the trial are gloomy. As Charles noted when he viewed the ClinicalTrials.gov reference to the CDX-110 trial (last updated November 2009), it appears the researchers are not recruiting any new patients.
And when you read the above-linked articles, you'll see that the ideal candidates for CDX research are those whose tumors were almost totally resected during initial debulking surgery, and who successfully underwent standard in-tandem radiation and Temodar therapy. Longtime readers know that Mom suffered a severe MRSA infection, necessitating three surgeries after the first debulking surgery. This interrupted her planned therapy; she not only went through the operations, but also underwent eight weeks of antibiotic treatment to flush the MRSA out of her system to the extent possible.
By the time Mom was ready to begin in-tandem radio- and chemotherapy in earnest, she was growing a second tumor-- precisely what the CDX trial researchers don't want to see. The CDX vaccine isn't merely preventative, but the researchers want to see how well the drug works, along with Temodar, to prevent tumor recurrence.
All of this was unclear in the WJLA news report, but it's now clear that Mom doesn't really fit the research profile. Still, there's no harm in asking the researcher in charge, Dr. Theodore Schwartz, whether his team might consider Mom. Dr. Schwartz is also based at NYP/Weill-Cornell, so it's likely he knows the doctors we'll be seeing on Tuesday (Drs. Boockvar and Riina, we hope). During our Tuesday visit to NYP/WC, we'll ask the docs to let Dr. Schwartz know about Mom. It may be that they'll be able to tell us, on the spot, whether there's even a slight chance that Mom could be a candidate for the CDX trial.
Final note: one commenter-- whose comment I didn't publish because it lacked any identification (please see the comments policy; links to the policy are all over this blog)-- wondered whether the term "vaccine" referred to something preventative. That's a good question. One of the above articles says this:
Cancer vaccines are intended either to treat existing cancers (therapeutic vaccines) or to prevent the development of cancer (prophylactic vaccines). Therapeutic vaccines, which are administered to cancer patients, are designed to treat cancer by stimulating the immune system to recognize and attack human cancer cells without harming normal cells. Prophylactic vaccines are given to healthy individuals to stimulate the immune system to attack cancer-causing viruses and prevent viral infection.
So a vaccine isn't always preventative; it can also assist in diminishing or curing a pathology.
UPDATE: The second article linked above, the September 25 one, makes it clear that Mom is ineligible:
Dr. Lai is aiming to recruit up to 20 patients in the trial, but added that the study has strict guidelines about who is eligible to enroll. "It's by no means a very easy trial to get into – we're very vigilant in our screening of patients," she said. Patients are not eligible if they have undergone chemotherapy and radiation and still have a tumor larger than 1 cm or have more than one tumor.
Timing issues are also important for entering this trial, Dr. Lai said. "The patient would probably have to be screened before they start chemo-radiation to have a chance to get into the trial because the study starts two weeks after the completion of chemo-radiation." The major criterion is that patients must have the tumor protein that is the vaccine's target.
We can only hope that the treatment will have moved from the trial phase to actual implementation while Mom still has a chance of benefiting from it.
*"Recurrence" and "Occurring," it should be noted, do refer to two very different states of affairs. Frankly, I wonder whether the second article's title is appropriate, as it implies that people with no brain cancer might get an injection of the vaccine to prevent a first occurrence.
_
Saturday, December 5, 2009
lunch... at 5PM
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.
_
Friday, December 4, 2009
one thing Dad found out
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.
_
gray day
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 cradled her
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.
_
the trial we're hoping to enroll Mom in
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.
_
back from the medical center
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
Mom status update
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.
_
how not to do journalism
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.
(Ivanhoe Newswire)
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!
_
starting back
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.
_
Ulta, round one
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.
_
a minor triumph
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.
_

