We hit a local Korean restaurant called Sorak Garden on our way back from the dentist, purchasing a very nice stew for Mom. As it turned out, Mom has no major problems in her mouth; the "clicking" she's doing with he teeth isn't caused by a loose tooth, and aside from the thrush problem, Mom has no other worries. Her next appointment has been scheduled for three months from now.
Saturday, November 7, 2009
We hit a local Korean restaurant called Sorak Garden on our way back from the dentist, purchasing a very nice stew for Mom. As it turned out, Mom has no major problems in her mouth; the "clicking" she's doing with he teeth isn't caused by a loose tooth, and aside from the thrush problem, Mom has no other worries. Her next appointment has been scheduled for three months from now.
We're whisking Mom off to a dentist in Koreatown this morning. Mom's been needing a checkup, and lately she's been "clicking" one of her teeth in a manner that suggests it may be loose and in need of extraction. Today might turn out to be the first of several dental appointments.
A little after dinnertime on Friday night, I called out to Mom from behind the kitchen counter; she was sitting on the living room couch with her head resting on a pillow, facing away from the TV-- and from the rest of us. Something seemed amiss.
No answer. Mom didn't move.
"Mom!" I called again, alarmed.
Dad began walking over to where Mom was. When he was halfway there, Mom slowly turned her head toward me.
My chest was pounding like a kettle drum, but I sagged at the kitchen counter, flooded with relief.
Friday, November 6, 2009
We'll be taking Mom out to the park today for her walk.
A few other health notes:
Mom's diuretic, Maxzide, has helped reduce the swelling of her feet, as has our insistence on keeping her feet comfortably raised whenever she's seated at her couch. We'll be stepping down Mom's dosage from one Maxzide pill a day to half a pill per day.
Yesterday, I needed to find out whether Mom would be able to gargle or swish salt water around in her mouth, so I gave her a swallow of plain water and asked her to swish it around like mouthwash. As I suspected would happen, she swished the water around, then swallowed it. I don't want to risk re-doing the experiment with actual salt water; the last thing Mom needs is for me to play havoc with her blood pressure. To help her out with her thrush problem, we may need to purchase a medicine, such as the aforementioned Gentian violet, that can be applied directly with a swab to Mom's tongue.
During Mom's walk two days ago, I asked Mom to raise herself on tiptoe five times, which she did. This signaled the beginning of a new exercise regimen for her; she absolutely needs to strengthen her legs if she plans to be able to get into the car, onto a bar stool, and up off the couch or toilet ever again. As things stand, Mom tries her best to do all these things, but she's too weak to do them alone. Whether she'll ever be strong enough to move about more independently is doubtful, but we at least have to try to get her stronger.
Thursday, November 5, 2009
According to Dad, Mom's blood pressure was fine, but her blood sugar was high. Since I'll be moving Mom away from the pasta and bread carbs she's been eating the past few days, blood sugar shouldn't be a major problem. Mom's feet remain normal-looking, despite a hearty breakfast (I'd bought breakfast for Mom and Dad while they waited for Mom's infusions to finish). Lunch, when we got home, was simple: Dad didn't want anything, and Mom got a bowl of fruit and a cup of yogurt.
Today's session went from 8AM to 12:40PM. Mom goes back to the medical center in two weeks for an Avastin-only session, which ought to be much shorter than today's field trip.
We took Mom out to Fort Hunt Park yesterday, where she chugged along for 680 yards at a strong and steady pace. The weather was cool, but Dad had bundled Mom up pretty thoroughly, so she was fine.
When we got home, Mom again chose to use the deck stairs instead of the ramp to get to the house's back door. We're proud of her determination; climbing those five steps is one of the few remaining ways for Mom to demonstrate-- and experience-- a measure of dignity.
Traffic was horrible, as per usual, but we left at 7:06AM and made it to the medical center with a few minutes to spare. I'm once again sitting in the van atop the parking deck. It's going to be a long, long wait this time: Mom's getting blood work plus two intravenous infusions done. We may be here until almost lunch.
Meanwhile, I'm very worried about Mom's thrush. WebMD.com has a few good articles about it (here, for example); for most young and relatively healthy folks, thrush isn't bad news. But for older folks, especially if they're immunocompromised, thrush can be serious business, sometimes even moving from inside the mouth to the bloodstream and internal organs.
With Mom starting carboplatin today, it's crucial that we hit the thrush problem hard: carboplatin depresses blood count, which means a further weakening of Mom's immune system.
Mom has apparently had thrush for a while. I see it on the tip of her tongue these days, and we know it's taken over a lot of the rest of her mouth. Dad and I are hoping that her new anti-thrush meds will be able to get rid of the infection within two weeks.
Mom hasn't complained of pain from the thrush yet, but then again, because she isn't too verbal, she doesn't complain about much at all. It's up to us to be her on-site doctors, exercising proactive vigilance-- not an easy task when you don't always know what to look for (which is why I was so relieved that Dr. Heery spotted the thrush a few days ago).
So that's where things stand for the moment. I've asked Dad to ask today's doc or nurse to check out Mom's thrush, and to give the rest of her body a once-over as well: thrush doesn't only appear inside the mouth.
We'll be making Mom gargle and swish salt water a few times a day to help her anti-thrush meds do their job. There's also a dye called "Gentian violet (1%)" that, when applied directly to infected spots, can help some cases of thrush. We also need to steer Mom's diet in a more Atkins-ish direction, because carbs and sugars encourage the growth of thrush. More jjigae, less juk. And no wine or mouthwash, either, as it turns out.
We're doing what we can for Mom, but every yang has its yin: whenever we start her on some new therapy, the treatment comes freighted with nasty side effects. In this case, as I mentioned before, the thrush was abetted by the Decadron, which looks more and more like a truly evil medication.
This article, about the many chemicals we ingest and absorb, ought to leave you nicely paranoid about your own chances for getting cancer. Extract:
Let’s start with the bad news: You are saturated with man-made chemicals, some of them toxic. Today’s exposure began when compounds in your shampoo and shaving cream seeped into your skin cells, and during your morning coffee, when you drank chemicals that were released into your brew as hot water ran against the plastic walls of your coffeemaker. It continued all day as you touched industrial chemicals in packaging, or walked through pesticide-sprayed lawns, or cooked dinner on nonstick pans. This very minute, your skin is probably touching a piece of clothing or furniture that was doused in protective chemicals to make it resistant to microbes, fungus or water. Tonight, there’s a good chance you’ll curl up in sheets treated with flame retardants.
Some of these chemicals can stay in the body for decades, and in numerous studies over the past eight or so years, environmental toxins have been linked to everything from early puberty to cancer. David Servan-Schreiber, a founding member of Doctors Without Borders in the U.S. and a cancer researcher who survived the disease himself, summarized our predicament in the New York Times last year. “Since 1940, we have seen in Western societies a marked and rapid increase in common types of cancer,” he wrote. Since 1974, leukemia and brain cancer rates in children have risen by 28 percent.
Read the rest on your own. The article is about a guy who's trying to analyze all the chemicals in his system.
Wednesday, November 4, 2009
Mom's chemo session happens tomorrow morning, 8AM, at the Prosperity Medical Center. I'm not sure whether the pros will be doing blood work; I kind of hope they will.
Mom will be receiving a double whammy tomorrow: Avastin first, carboplatin next. The entire infusion is supposed to take around 90 minutes. Her schedule for the near future looks something like this:
Session 1: Avastin + carboplatin
Session 2, at T + 2 weeks: Avastin only
Session 3, at T + 4 weeks: Avastin + carboplatin
Session 4, at T + 6 weeks: Avastin only
Session 5, at T + 8 weeks: Avastin + carboplatin
Dates haven't been fixed for sessions 2-5, but I'm sure they will be soon. After the fifth session, Mom will be MRI'ed at NCI, and we'll have another consult about whether the carboplatin is doing anything. In the meantime, we're to be on the lookout for any new symptoms-- not merely due to tumor growth, but also due to the depressed blood count that is a major side effect of carboplatin. As we proceed into colder weather, Mom will be increasingly vulnerable to infection. Caution is, as always, paramount.
Mom's being visited by a pastor and an elder today; as happens once a month, we'll be celebrating communion. After that, Mom absolutely must go walking: she's missed several days as Dad and I have busied ourselves with various tasks and errands.
On a more positive note, I'm happy to report that Mom's feet were almost perfectly un-swollen yesterday. We now have a comfortable system for elevating her feet-- one that involves pillows arranged a certain way to keep her feet up and her knees slightly bent.
Dad bought me some Afrin nasal spray yesterday. I used it last night, and within about an hour, my sinuses had unblocked themselves. It was nice to be able to breathe freely for a while, but there was a catch: I still couldn't smell or taste anything. I imagine this is because Afrin works by reducing any swelling of the sinus tissues, which isn't the same as eliminating the mucus that's covering (and muffling) the olfactory apparatus.
If I puff air quickly through my nostrils, I can sometimes catch a whiff, and therefore a taste, of whatever I'm eating or drinking. But I can't huff and puff for minutes on end, so most of my food and drink go untasted. On the bright side, I'm developing a greater appreciation of texture.
This looks promising, but it's still in the animal research phase:
Duke University bioengineers have developed a simple and inexpensive method for loading cancer drug payloads into nano-scale delivery vehicles and demonstrated in animal models that this new nanoformulation can eliminate tumors after a single treatment. After delivering the drug to the tumor, the delivery vehicle breaks down into harmless byproducts, markedly decreasing the toxicity for the recipient.
Nano-delivery systems have become increasingly attractive to researchers because of their ability to efficiently get into tumors. Since blood vessels supplying tumors are more porous, or leaky, than normal vessels, the nanoformulation can more easily enter and accumulate within tumor cells. This means that higher doses of the drug can be delivered, increasing its cancer-killing abilities while decreasing the side effects associated with systematic chemotherapy. [Italics added.]
It would be nice if Mom had access to this. Is a phone call to Duke possible, at least to find out more? I should think so.
Tuesday, November 3, 2009
I was outside from about 12:30 to 4PM today, working on the front yard, which turned out to be much, much worse than the back yard. My two-day combined lawn bag total was 19. Compare that to a summer average of about 2-3 bags per mowing session (combined total for the front and back yards). Leaves make a difference: they curl up and add volume, acting like styrofoam peanuts. Now if only we could create a "Back to the Future"-style Mr. Fusion energy generator, so as to find an easy way to power the house with all those leaves...
And although both yards have now been mown, and all 19 bags are down at the curb (I piled them onto a tarp and hauled them, in two trips, to the street), there's still more work to do. We've got leaves on our deck, for instance; those need to be blown off and collected. We've also got leaves on the driveway, and leaves scattered on the sidewalk that fronts our property. I might have to go out again tomorrow and take care of all this, but part of me is thinking it would be better to wait until next week: more leaves will have fallen from the trees, and it'll be easier to bag them all in one fell swoop. Yard debris collection day is tomorrow; the recycling guys come early in the morning, so even if I did collect the extra leaves during the late morning or early afternoon, the bags would be sitting for a whole week. Not worth it.
Sean came by today and hung with Mom for a couple hours. He told me that Mom was a bit verbal with him; she even asked Sean where I was. A few minutes ago (4:16PM), Mom's friend Mrs. Krieger called, sounding as if she had a sore throat. She had wanted to say hi to Mom; when I told her that Mom wasn't very verbal, she spoke with me instead. Here's hoping that Mrs. Krieger's upcoming trip to the doc is fruitful. In the meantime, we thank her for her call.
Thanks, as well, to our church for sending us some lovely flowers. Today's good-will ambassador was Beth Cline, whose beaming face I've missed seeing. She introduced herself to me: "I'm Beth Cline!" "I know!" I cheerfully responded. With my short hair and sweaty appearance, I must have been unrecognizable to her. (In truth, I was pretty filthy.)
Tonight's dinner is a modest Southern-style barbecue: pulled BBQ beef, corn bread with honey butter on top, pork and beans, and salad.
Last night, I took out four pounds of frozen beef and stuck it in a slow cooker (we have an actual crock pot hiding somewhere, but the slow cooker was the first thing I saw), prepping it according to this recipe, with very minor alterations. Late this morning, I was rewarded with a cooker full of tender beef that would have fallen off the bone had there been any bones off which to fall. Dad said the kitchen smelled good. Not all of the meat had been tenderized; the chunks had originally been cut at haphazard angles so as to get the meat into resealable bags as quickly as possible for storage. As a result, some of the tougher muscle groups were left to cohabit with the more tender ones. Not to worry: the sauce in which the beef is slow-cooking contains enough acidity to break down any meat, given time.
Dad's back from his morning trip to the dentist (the saga of his tooth continues; repairs are occurring in tiny increments) and unable to eat a lunch of solid food. This works out well: the BBQ beef will be served at dinner. I was able to "pull" enough beef to serve him, Mom, and myself; the tougher beef ought to be more pliant by this evening.
Mom's been awake since about 10:30AM; Dad's going to prep her when she's ready to get up. I'll serve her lunch, and poor Dad will fend for himself, I suppose; for him, lunch will be a soup or a shake). Once lunch is served, I need to go out and do the front yard, and Dad needs to go on some major shopping and prescription pick-up errands. It's going to be a busy day.
As I wrote before, yesterday's yard work took much longer than normal and required about three times as much bagging of lawn debris. I need to get a move on today: the front yard, though smaller than the back, has way more leaves in it.
Monday, November 2, 2009
Over the course of these five weeks of illness, I appear to have lost about nine pounds, largely thanks to the fact that I haven't been able to smell or taste anything for most of that time. This isn't quite how I imagined embarking on my weight loss campaign; if anything, it feels a bit like the other interruptions that have plagued my and my family's life since... well, since forever. That's been our curse: we make big plans, then something comes up.
Just a few recent examples:
I had been about to get back on the road when Mom's cancer announced its presence.
Dad went through training to be an EMT, then was the victim in a drunk driving accident that claimed most of the use of one knee.
Mom had just retired last year and had been hoping to enjoy her new life in a freshly renovated house, but now, thanks to the cancer, it's hard to say how deeply she enjoys anything.
Mom was supposed to start radiotherapy right after her first surgery, but a severe MRSA infection flared up, which meant delaying therapy while Mom underwent three more surgeries and an 8-week daptomycin (antibiotic) regimen. During that period of delay, Mom's second tumor (of three known masses) grew to the same size as the first tumor.
I hammered out my blood pressure attack plan, then promptly came down with bronchitis, a condition I've never had before.
It's enough to make one rail at fate.
But I guess you have to believe in fate to rail at it.
I went out today and mowed the back yard. Mowing, when so many leaves have fallen, also doubles as raking. I hadn't mowed either yard in more than a month due to my sickness; I'm still sick, but the yard needed doing (the back is being taken over by onion grass, and some of the exposed dirt-- a relic of last year's renovation-- has become overgrown with moss), and I'll be out doing the front tomorrow.
A normal session in the back yard, during the summer, means producing about two bags' worth of lawn clippings. But with a month of growth and leaves to boot, today's haul was about eight bags. The whole process took longer, too: close to three hours as opposed to an hour and fifteen minutes. I had to rake leaves out from under the wheelchair ramp as well; the mower was no good for corners and tight spaces. In the end, though, despite all the grunting and sweating, I felt that I had accomplished something. Doing little more than cooking and limited household chores for a month can get a bit stifling. It was good to spend time outside, sickness or no sickness.
Mom was visited by her friend Mrs. Merrill today; she talked to Mom the entire time, massaging Mom's feet as well. When I came in, I saw that Mrs. Merrill had made good on her threat to bring over some fruit: we now have a huge box of Korean pears. While I'm thankful for the fruit, I'm more thankful that Mom got just the sort of attention she needed.
The day wanes. I need to shower and think about making dinner. I've risked ducking downstairs to type this entry and get cleaned up, fairly confident that Mom won't try anything funny. She seems unusually quiet and passive today; she becomes more verbal only when I'm within touching distance. I worry that her perseveration is once again flaring up. These days, it's increasingly difficult to tell what sort of cognitive symptoms Mom might be suffering; the less she speaks, the more we have to infer from nonverbal cues.
Sunday, November 1, 2009
I was wrong: Mom didn't wake up at 11AM. She was asleep until well past 2PM, and got out of bed sometime after 3PM. She seemed fine; Dad didn't notice any temperature or any other signs of illness; Mom shook her head "no" when I asked her whether she had a headache.
She'll be out of the bathroom soon. I'm not sure what to call the meal I'll be fixing for her. Linner? Dunch? I hope Mom will be able to sleep normally tonight; she needs to wake up in time to receive a visitor tomorrow at 2PM. Then again, if Mom isn't up in time, we'll simply call our visitor and cancel. We've done it before-- just ask our pastors!
UPDATE, 4:46PM: Mom's showering. We're so close to dinnertime that I'll just be making her a bowl of oatmeal or something to tide her over.
UPDATE, 6:57PM: Mom came out of the bathroom way late, probably around 5:30 or 5:45PM. She had enough strength to climb up into her barstool by herself, even going so far as to reject my help when I offered it. I ended up giving her a bowl of plain yogurt sprinkled with a bit of brown sugar, then topped with some applesauce and muesli-type cereal.
UPDATE, 11:19PM: Dinner involved the use of leftover ingredients in the fridge and freezer. I made some spaghetti bolognese, mashed potatoes that included some Korean goguma, and salad from whatever I could scrounge from the dark corners of the fridge. Making this sort of food without the benefit of smell or taste wasn't impossible, but it also wasn't easy. David came over this evening, so I enlisted his and Dad's help as tasters, just to make sure I was on track. Everything turned out fine, according to them, and Mom ate her entire serving.
Mom's feet also became quite swollen as she sat at the bar, feet dangling. I propped her feet up on an adjacent bar stool, and Dad came by a few minutes later to slip pillows under her feet. This sort of elevation does Mom's feet a world of good, but it also puts strain on her knees, which are locked into a full extension. In the bar stool situation, there's no way to prop Mom's knees so that they can bend slightly. Tonight, as it turned out, Mom figured out a way to help herself: she let down one foot at a time, allowing each knee a chance to decompress before putting it back up on the bar stool next to her. The end result of all this knee and foot care was that Mom's feet were far less swollen by 11PM than they had been around 8PM. What's more, I was impressed by Mom's ability to raise her feet to the level of the adjacent bar stool without any help.
This summary is intended for latecomers to the blog who don't have the time or patience to read the details about Mom's cancer, or about how it's affected the lives of her husband and sons. I will probably create updated versions of this summary from time to time. The summary that follows is the modified version of an email sent to a family friend. A link to this entry will be posted on the right-hand sidebar for easy accessibility.
Mom has glioblastoma multiforme (GBM), the most aggressive form of brain cancer. It's the same cancer that did Ted Kennedy in. He lasted 15 months after diagnosis. The average life expectancy for most patients Mom's age, post-diagnosis, is about 13 months. A very, very small percentage-- about 4%-- are lucky enough to live beyond 5 years after diagnosis. Life expectancy depends on a large number of variables: age, tumor location, ease of surgical removal, ability to function after surgery, etc.
Mom presented with cognitive symptoms on April 16, 2009-- very suddenly-- and it was discovered that she had a sizable tumor near the surface of her left frontal lobe, plus some growth moving across the corpus callosum. She underwent four surgeries (4/21, 5/25, 6/9, 6/10), suffered a bout of infection that nearly killed her (the second, third, and fourth surgeries were all related to the infection), and then began an in-tandem regimen of radiation and chemotherapy, as is standard for GBM, after completing an 8-week course of daptomycin, an antibiotic. By the time we were ready to look into second-line therapy, the cancer had formed two more masses in Mom's brain. Both of these were deeper inside than the first tumor, which had been about 80% "debulked," as they call it, during the first surgery. Debulking almost never removes the entire tumor; GBM and other gliomas tend to be fuzzy at the edges, making it difficult to determine how much affected brain tissue to remove.
We eventually learned that the in-tandem radio- and chemotherapy had killed a significant portion of the second mass, which was good news. But the third mass appeared (we think) after the therapeutic regimen was finished. Instead of continuing the standard treatment, which would have been several months of chemo alone, we moved to stronger, second-line therapy.
Mom is currently on Avastin, which became a standard second-line therapy for GBM only as of this past May. Avastin is taken through intravenous infusion; it works by stopping the growth of new blood vessels and helps to shrink the blood vessels feeding the tumors. Some patients experience a halting of tumor growth; luckier patients enjoy actual tumor shrinkage. A large percentage of patients, however-- 30-50%-- do not respond to Avastin at all. On October 30, we learned that the first two masses responded to the Avastin by shrinking, but the third mass has grown unchecked. Mom is therefore starting yet another type of chemotherapy on top of the Avastin: carboplatin. We are unclear on how effective this measure will be.
re: Mom's general condition
Mom's debulking surgery involved the removal of most of her frontal lobe, which is the seat of so-called "executive functions" in the brain-- things like initiative, logic, and so on. In the subsequent surgeries, a portion of her skull, called a "bone flap," was removed; because the bone had been badly infected, it was never put back in. A synthetic bone flap is available for Mom, but because she is currently on Avastin, which impedes healing, the risk of installing the new bone flap is too high: Mom could easily be re-infected. Because Mom's head is now extremely vulnerable to any sort of injury, she has to wear a special helmet every time she stands up.
All this means that Mom needs 24/7 care, which is what Dad and I provide for her. I almost never leave the house; Dad's usually the one who goes on errands and such. Mom can walk, albeit slowly and with little strength, and she sometimes tries to help with kitchen chores. Dad and I often take Mom out for walks, either at local parks or in shopping malls. She doesn't talk much anymore, which might be a sign of the cancer spreading backward to language centers. She makes up for her silence by "talking" through facial expressions and gestures. She often has trouble deciding what she wants, usually hearing her choices ("Do you want rice or soup?") and responding by staring at, or turning away from, the questioner.
Her weight has fluctuated due to the meds she's been taking, especially Decadron, a corticosteroid that prevents brain swelling. Decadron breaks down muscle tissue (the opposite of anabolic steroids), causing weight loss; paradoxically, it also increases the patient's appetite, promoting weight gain. I'm the resident cook, and it's my job to keep Mom as well fed as possible. At first, Mom became almost gaunt despite our best efforts at stuffing her with food. She's back to a healthy weight now, after doctors suggested that she ingest way more protein. So we bombard her with shakes, special chocolate bars, and a lot more meat, tofu, and soy bean sprouts. Whatever works.
Among Decadron's many nasty side effects is susceptibility to a fungus called thrush, which can form inside the mouth, on the tongue and throat. During Mom's October 30, 2009 visit with the doctors at the National Cancer Institute (which has taken over care from Fairfax Hospital), it was discovered that Mom has a mild case of thrush. She has been prescribed meds to combat this.
[UPDATE: A visit to the infectious disease specialist on November 9, 2009 led to the discovery that Mom may have had thrush, but what she now had was a condition called "geographic tongue," which has a variety of causes, including vitamin deficiency, hormone imbalance, excessive sugar or spicy food, etc. There is no specific cure; it often goes away on its own.]
Mom's behavior also tends to be perseverative. Perseveration refers to the tendency to fixate or to coast along when exhibiting a certain behavior. A perseverative person might, for example, find herself unable to avoid repeating a certain word or expression, no matter what someone asks her. She might also fall prey to a compulsion to start cleaning things, and once she starts, she can't stop. She might also have trouble taking pills, holding them in her hand and staring at them instead of downing them right away. Mom becomes more perseverative when she's suffering a brain swelling; this was an issue after her various surgeries, because cutting the brain causes swelling in response. Tumor growth also produces edema as the tumors press outward against normal brain tissue.
So Mom is quiet most of the time, and we've been very lucky that, at least so far, she hasn't been prone to seizures, which are normal for many GBM patients. Occasionally, Mom will say something, but it's rarely more than a sentence, and it's not always coherent. Her memory is shot, so she needs constant reminding of what she's doing and where she's been.
GBM has no cure, and scientists still have no idea what causes it. They can't correlate it to personal habits, environmental factors, or heredity. Avastin has proven effective as a stopgap measure, but the cancer eventually becomes Avastin-resistant. In the end, most patients die not long after diagnosis. The only possible "happy" ending is for the patient to live with the cancer for years, then die of old age. We were told from the outset that Mom can never be cancer-free, and that the odds of such a "happy" ending were slim.
So that's what our family's been dealing with since April 16, 2009. I've been chronicling this on the blog; if you haven't been reading it, I highly recommend it as a way to keep up with what's going on. Early on, we were flooded with "How is your mom?" questions from friends, relatives, and former coworkers; it became too difficult to summarize and re-summarize Mom's condition, which is why I began blogging about it. Since then, word has gotten around, and the questions have dropped off.
The blog isn't a sterling example of great literature, and if you try catching up from April 16 onward, it'll be quite a slog, because I usually update the blog at least twice a day. A lot of what appears on the blog is mundane, housekeeping stuff, but I also write about how the family is doing. I'm not just writing about Mom's decline for others' benefit; I'm also doing this so that our family can remember, so that we can preserve a chronology of events. The blog has actually proven useful when we've been unable to remember the exact date of this or that appointment or surgery, which is another reason why I keep writing.
Anyway, the site is open to comments; all readers should feel free to leave some (comments appear subject to approval by me; see the comments policy).
UPDATE, January 1, 2010: Happy New Year. I'm writing this update from New York City at 1:16AM.
November and December saw Mom declining as her carboplatin proved completely ineffective, and the cancer raged through her brain. She began to lose all ability to speak, and continued to become increasingly perseverative. Her muscular atrophy worsened, and we found ourselves no longer taking her on walks; it was quite enough to try to get her into the car. The house's wheelchair ramp, which had been built for us in a single day (several months ago) by church members and staffers from a local hardware store, finally began to be used for its intended purpose. Mom, meanwhile, lost the ability to feed herself, and went from nodding "yes" and shaking her head "no" to merely nodding "yes" when asked yes/no questions. To indicate "no," she would simply remain still.
The above deterioration occurred over two months' time. Some readers and friends, meanwhile, found and passed along a November New York Times article about a radical new treatment using Avastin delivered directly to the tumor via a microcatheter. Excited by the initial results (near-total tumor shrinkage in almost every case), Dad found the doctors managing the trial, and in early December we took Mom up to see them. Initially one doctor, Dr. Boockvar, was enthusiastic about enrolling Mom in his trial. But when we brought her back for treatment (arriving in New York again on December 18, about half a day ahead of a huge snowstorm), we were disappointed to discover that, after Mom's December 21 MRI, that Dr. Boockvar felt the cancer had progressed too far, and that his treatment would more likely kill her than help her.
The news that Mom had been rejected from the trial, after all our efforts to get her ready for it, was a real blow to us. The very night after we had received the bad news, Mom suffered extreme respiratory distress; a little after midnight, Dad called 911 and the paramedics took Mom next door to New York Presbyterian Hospital. She spent her first night in the ER, and was moved up to the ICU of the Greenberg Pavilion, 5th floor, Room 5-404. She's been there ever since, and is there as of this writing.
It turned out that Mom was suffering from one or several severe infections, caused in part by her inability to swallow and breathe properly. She had been inhaling pathogens into her lungs (along with chunks of food) for at least a few days, and was also suffering a return of MRSA. Mom was unable to breathe on her own, and was placed on a ventilator. The ICU docs gave her massive amounts of fluids, as well as a suite of meds.
Mom's condition while in the ICU might best be described as a tenuous stability: her vital signs indicate no real improvement, but they waver enough for us to think she might crash at any time. In particular, her pulse and breathing remain too rapid, while her blood pressure vacillates between normal, too high, and too low. Visually, Mom looks terrible: she's swollen from all the fluids (despite regular diuretics), and she can no longer blink properly. Her eyes have consequently become swollen and irritated. She remains completely dependent on her ventilator.
Dad has been working hard to arrange for Mom to be transported closer to our home. At present, he has found an ICU berth at Walter Reed Medical Center; it's possible we might switch Mom to Walter Reed's new hospice facility (recently recommended to us by family friends), or we might arrange for home-bound hospice care (which would be my preference).
Our family has been in New York City since December 18, and has racked up a massive parking and hotel bill during our stay at the Helmsley Medical Tower, a facility for medical professionals (upper half of the building) and guests of the various medical facilities in the immediate area (lower half of the building).
Finally, in case the above update doesn't make it clear: I should note that we are no longer looking to treat Mom's cancer. Dr. Boockvar's trial was our final hope. At this point, we only want Mom to end her days with as little pain and discomfort as possible. Advance medical directives and a DNR (Do Not Resuscitate) order are in place. My own hope is that she will quietly and happily slip away-- perhaps to a great nothingness, perhaps to a great adventure. Whatever happens, may she not suffer.
That's where things stand as of 1:33AM, January 1, 2010.
UPDATE, January 7, 2010: Mom died yesterday morning, January 6, at Walter Reed Army Medical Center, in Washington, DC. Time of death was called at 8:03AM. Her heart gave out, sparing us the terrible burden of having to extubate her and watch her struggle to breathe during her final moments.
Mom had been transferred from New York Presbyterian Medical Center down to Walter Reed via a special patient transport service on Saturday, January 2. I drove the van alone while Dad rode in the ambulance with Mom. The transfer went smoothly; Mom's vital stats didn't change much during the trip, though they did settle down a bit once she was moved into Bed 7 at the Walter Reed Building 2 Ward 40 medical ICU. We knew she was in a pretty sorry state; her immune system had shut down, and not long after, we saw she was no longer feverish-- a sign that the fight had left her.
Mom died quietly and, we hope, peacefully. Some mythologize her passing by saying "she went on her own terms." She certainly defied predictions, even to the very end. We had been planning to extubate her on Thursday the 7th, but she slipped away from us on Wednesday.
For me, there have been plenty of tears during this entire ordeal, but during the final weeks of Mom's life, my emotions became ever more raw. The moment she died, I sobbed and sobbed, as did Dad. My brothers cried as well, but Dad and I had been her 24/7 caregivers all these months, so we felt her loss with the intensity of people who had spent far too much time fighting off the specter of death.
People following the blog have left many kind comments-- condolences, well-wishes for the family, etc. Our thanks to everyone for their care, concern, and love. Love makes the world go 'round, a fact that all moms know very well. Our mom certainly did.
We love you, Mom. Very much.
Mom spent a good part of her Saturday standing at the kitchen bar, watching me carve the three small pumpkins, and occasionally reading a news magazine or catalog. In the middle of the afternoon, Dad and I took Mom out for a walk at Fort Hunt Park; the weather was fairly warm and humid and occasionally breezy, so we bundled Mom up against the wind.
The walking route we took was a bit different this time, and totaled about 640 yards instead of 680. Unlike what happened during her previous walk (the hilly one at Riverside Park), Mom's pace was steady and surprisingly fast, and her grip on my hand was firm-- no shaking or trembling. When she got home, she tackled the five steps up our deck with surprising strength, needing very little help from Dad. Where did this vigor come from?
She hadn't wanted to go walking at first. Dad surmised that Mom's reluctance had to do with her fascination with the pumpkin-carving I'd been doing. He was probably right; we had originally wanted Mom to go walking alone with Dad while I finished the pumpkins, but it wasn't until I stopped carving, and asked Mom if all three of us should go to the park, that she agreed to do some exercise.
When we got back home from the walk, Mom resumed her position at the bar and continued watching me work. Dad, meanwhile, prepped the Halloween candies for all the trick-or-treaters, and set up the pumpkin display. He put out the two "parent" pumpkins first; when I finished the laughing pumpkin that represented David, Dad placed that one outside and lit the little votive candles. I completed the fanged, head-biting pumpkin next, then finished with the screaming pumpkin. Mom didn't want to go outside to see what the final display looked like, so I took some pictures on my digicam and showed them to her. The picture I ended up blogging, however, was taken by Dad on his far superior digicam, which handles nighttime shots a lot better than mine. (Note: avoid Olympus; buy Sony.)
Dinner was Papa John's pizza. Mom had seen the coupon sitting on the bar, and Dad had hinted that he had a hankering for pizza, so around 6PM, Dad ordered carry-out and drove off to get the 'zza. While Dad was gone, two groups of children came by to ask for candy. They were tiny and cute, and far too young to appreciate my pumpkin art, alas.
Dad came back fairly quickly with the pizza. Bizarrely, Mom didn't eat her slices, preferring instead a bowl of that super-proteinated soup I'd made for her. She didn't seem all that hungry, which I felt was a good thing: she needs to eat less in the evening, anyway. But I still had to wonder why she had seemed so interested in the Papa John's coupon.
We didn't have too many trick-or-treaters. When the first group arrived and knocked on our door, Mom jumped. The sudden appearance of guests still surprises her, and she still needs time to ready herself. I reminded Mom that it was Halloween, and that we'd be hearing from lots of munchkins. "Oh, yeah," she whispered, nodding. But only a few groups of munchkins showed up in the darkness and rain.
Because the head-munching pumpkin had a wide-open maw, the candle inside its mouth kept blowing out in the evening breeze. We didn't have any tiny, battery-operated lights, so I went to the local Home Depot and bought a mini-maglite, one of those tiny flashlights that can hang off a key chain. When I got back home, I bored a hole in the back of the pumpkin, and placed the light inside it. Perfect. Solved all my problems. (Dad's picture was taken when the pumpkin still had a candle inside it.)
While I was away on my hardware store errand, Mom ate her soup and watched Korean TV, happy as a clam. Later, she was tired enough to want to get to sleep early. I gave her her nightly hug. Tomorrow, thanks to the rollback of the hour to bring the US back to "standard time" as opposed to "daylight savings time," Mom will wake up at 10AM instead of 11AM. But right now, she's asleep. Another day with Mom gone. But happily, another day with Mom dawns.