handling Ted Kennedy's GBM

Most of what I've seen today on the news about Ted Kennedy has been about his life, not about his tumor. I suppose it's only natural to treat the death of someone important as an occasion to celebrate life, but given the media's emphasis on Kennedy's role as a health care crusader, I would have thought that more than a cursory glance at his final affliction might have been apropos. Perhaps some news agency somewhere talked in depth about Kennedy's cancer today; I didn't see any such analysis.*

And that's what I want to write about: the way Kennedy's cancer has been handled by the media over the past few months. I have no interest in discussing the senator's politics; suffice it to say that I'm neither a liberal nor a conservative, which means I find myself in agreement with Kennedy on some issues, and in disagreement with him on others. I am, however, interested in the way the various media-- especially online and on TV-- have handled Kennedy's sickness.

Even before we learned about Mom's tumor this past April 16, I was aware that Kennedy had some sort of brain tumor. As often happens when a certain type of pain makes one aware of fellow sufferers of the same pain, my interest in Kennedy's case increased once I discovered that Mom's glioblastoma multiforme (GBM) was the same type of tumor as Kennedy's. A bit of online research led to the discovery that Kennedy had presented with seizures in the spring of 2008, and that he was officially diagnosed with GBM in mid- to late May. As we now know, Kennedy survived approximately fifteen months post-diagnosis, placing him only slightly above the median life expectancy for patients who (1) are diagnosed with GBM, and (2) undergo the initial debulking surgery and the ensuing standard therapies. Patients who go untreated last only three or so months, at best.

The retrospectives on the news tonight reminded us that Kennedy spoke at Democrat functions as late as October of last year; even though his tumor was actually closer to one part of the language center than Mom's was, the surgeons must have done a bang-up job of excising as much of the tumor as they could, allowing Kennedy to retain a large measure of functionality.

What wasn't shown, though, was Kennedy's downward progress not long after that. By this summer, Kennedy must not have been capable of much at all, and as I guessed when he was absent from his sister's memorial service, he was in his period of final decline.

It was interesting to hear on the news, even as recently as a month or so ago, that Kennedy was supposedly "back at work." I tend to think this was a polite fabrication, given what I now know about how this tumor functions. Kennedy's cancer had been ravaging him for about a year; it would have migrated, as all GBMs do, from one side of his brain to the other, probably traversing the corpus callosum-- as happened with Mom-- thereby rendering a major portion of the tumor inoperable. The tumor's spread would have begun to affect all manner of brain (and, by extension, bodily) functions, making it difficult for Kennedy to appear in public without significant cost to the man's personal dignity.

I don't begrudge the senator and his family their desire to stay out of the limelight as this deterioration was occurring. Most of us have some sense of honor or shame that motivates us not to appear weak in public. As I noted long ago, we can't all be like Morrie Schwartz of Tuesdays with Morrie fame, a man who so easily let go of his earlier notions of dignity, inviting people to help him even with activities like going to the bathroom. No: Kennedy had a right to his privacy, and his family and friends probably did what they could to preserve his dignity.

But the average TV viewer was left with the impression that Kennedy had been more functional than he actually was over the past few months. Only a few days ago, on August 20, the news reported that Kennedy had "drafted" some sort of request to change Massachusetts succession law to make sure that his senate seat would not be empty upon his death. The news site Boston.com ran this piece, which was rather misleadingly worded. Note the first two paragraphs:

Senator Edward M. Kennedy, in a poignant acknowledgment of his mortality at a critical time in the national health care debate, has privately asked the governor and legislative leaders to change the succession law to guarantee that Massachusetts will not lack a Senate vote when his seat becomes vacant.

In a personal, sometimes wistful letter sent Tuesday to Governor Deval L. Patrick, Senate President Therese Murray, and House Speaker Robert A. DeLeo, Kennedy asks that Patrick be given authority to appoint someone to the seat temporarily before voters choose a new senator in a special election.

The video accompanying the article is equally misleading: it contains plenty of footage of an active and talking Kennedy, but fails to note that this footage comes from months ago, back when Kennedy would have been far more functional. When you look at the chronology and initial location of Kennedy's tumor,** it seems highly unlikely that he would have been competent to draft any letter about Massachusetts succession law even as recently as a month or two ago. GBM doesn't only migrate across the brain-- it is known for aggressive recurrence even after therapy. Killing the tumor cells becomes a game of Whack-a-Mole: you can kill cells in one or several spots, but more will appear elsewhere until the brain is shot through with cancer. So either Kennedy had drafted his request way back when he was still mentally competent to do so, or someone recently drafted it for him, and Kennedy gave it his blessing.

My point here isn't to promote some sort of wild-eyed conspiracy theory about fake documents. I don't really care who drafted Kennedy's request. What's important to me is that the media have, inadvertently or deliberately, done the public a disservice by obscuring the chronology of Kennedy's decline. In other words, an opportunity was missed to have a national discussion about GBM. Kennedy's progress, had it been somewhat more public, would have been informative to a lot of people. GBM cases surface at a rate of about 10,000 per year. It is the most common and most aggressive form of brain tumor out there, and yet most people have never heard of it. True: it might have been too much to ask Kennedy to make his own suffering public, especially given the amount of tragedy and scandal the Kennedy family has endured. But I still can't shake the feeling that the attempts to preserve Kennedy's dignity went too far, and left many people with a false impression about the progress of his tumor. As a result, Kennedy's death doubtless seemed sudden to some. It shouldn't have seemed that way to anyone.

When I learned the statistics related to GBM, had accepted Mom's prognosis, and discovered that Kennedy had been diagnosed with GBM over a year ago, I knew that Kennedy didn't have long. I wrote one relative that I didn't see him surviving beyond 2010. Little did I know, when I wrote that email a few weeks ago, that Kennedy's time was even shorter than I had suspected. Fifteen months.

As I've noted before, there are indeed a select few people who survive beyond the five-year mark: about 4% somehow manage this. But let's be realistic: half of all GBM patients are dead within a year; around 75%-80% are dead within two years. If you try to live life clinging to the hope that you're one of the people holding that lottery ticket, you'll go insane.

Considering what our family is going through now, I think it's safe to say that I have some idea of what the Kennedy family has endured during the senator's decline. I imagine that the old lion's death is both painful and something of a relief. Many caregivers report just such post-mortem ambivalence. For the Kennedys, the past fifteen months were probably made worse by all the media attention, but it would have been nice if the media had stuck to telling the simple truth about Kennedy's disease instead of leaving the public with the impression that the man was sprightly and vigorous to the very end (the video at the above-linked article is truly shameless). Just as I take a dim view of people who use their sense of denial to foist bogus "remedies" on my family, I also take a dim view of journalists who shroud or distort reality in ways not immediately obvious to the public. An opportunity to emphasize the dire nature of GBM was missed here, and that's a shame.

All that's left to say is... rest in peace, Senator Kennedy.

---

*I did, however, find a May 2008 Washington Post article on Kennedy's GBM.

**The diagnosis was in May of 2008; death was in August of 2009. The tumor's initial location was in the left parietal lobe, which includes Wernicke's area, a region dealing with the receptive aspects of language, i.e., listening and reading (Broca's area, farther forward, deals with the productive aspects, i.e., speaking and writing). I don't know where the tumor spread to, but its initial proximity to a major language center eventually would have made it difficult for Kennedy to communicate: the cancer's repeated return would have seen to that.


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walked

Mom's still fairly quiet today, but she did fine during her walk in the park. Dad and I took her to Fort Hunt Park after Mr. Go, the Korean siding specialist from Mr. Jeong's renovation/construction team, had finished his work (in theory, the sliding door problem has been fixed).

Mom managed to walk a few hundred yards with no real problem, though she did seem weaker than usual when getting into and out of the minivan. It was another beautiful day; the park was quiet. Dad mentioned that he liked the park when it was that way, and I agreed: the place is great when it's tranquil. Both of us held Mom's hands as we took her across grass and over asphalt, always following the tree shade to keep Mom cool. We looked around as we walked, enjoying the ambience. Then, without any ceremony, we drove back home.


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Lea Lane and her husband

My brother David emailed Dad and me a link to an article by Lea Lane titled "My Husband Fought the Same Cancer as Senator Kennedy." Lane is the wife of Rabbi Chaim Stern, a fellow sufferer of glioblastoma multiforme, like Ted Kennedy, and like my mother. Rabbi Stern lived a mere three months beyond his diagnosis, eventually succumbing to pneumonia. We, too, were told that infection is the most likely cause of death for many patients in Mom's situation. I can only assume that Rabbi Stern underwent the same therapies that Mom received; radiation and chemo would have contributed to a depression of his immune system and would have made him susceptible to something like pneumonia.

Lane's article contains many painful parallels with our own experience. Her initial mistaken assumption that her husband was having a stroke-- followed immediately by his aphasia-- was hard for me to read, because this is exactly what we experienced with Mom. Because the article is so short, it doesn't cover the minutiae of what life is like when caring for a GBM patient, but it is nevertheless a good summary of the overall trajectory of this cancer. I recommend that you read it.

There will probably be a whole slew of articles linking GBM and Ted Kennedy over the next few weeks. I, too, have some thoughts to share about this topic, but will take some time to gather my thoughts before writing that post.

Significantly, Lane writes:

With a grim diagnosis you are at least spared false hope and the ups and downs that distract from the time you have left. Accepting the inevitable, you can focus on the pleasures of the past and the precious moments of the present, carefully avoiding the difficulties of the future. Every day, fully lived, is greeted with appreciation.

My family's burden is in trying to get Mom's circle of care on the same page. Many of her Korean friends still refuse to accept that Mom's diagnosis is a grim one, perhaps holding on to hope that she will somehow, miraculously, get better. For these people, "positive thinking" or a "good attitude" means denying the prospect of death, as if wishful thinking were enough to stave death off. But as I wrote before, that sort of thinking is misguided and unhelpful. If anything, it causes more stress and pain instead of providing comfort where comfort is needed. It has the further effect of making us realists feel more isolated: we should all be on the same page, but we're not, because some among us remain in denial.

Obviously, some level of denial is natural, but as with everything in life, there's a time and a place for its proper expression or indulgence. Wallowing in denial or wrapping oneself in vain fantasies-- this isn't living, and it certainly isn't loving. Jeongshin charyeo! as the Koreans say: Wake up. Snap out of it. You can't live life with your head in the sand. In the above-quoted paragraph, Lane expresses what a proper attitude toward this sort of cancer should be. I fully agree with her. This should, in fact, be our attitude toward life, cancer or no cancer. No one lives forever; you never know when your time will be up, so treasure each moment. Accept that death is the Great Door at the end of the road, and make this life as meaningful as you can.


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RIP

Senator Ted Kennedy has passed away. GBM waits for no one.


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less verbal

Mom was visited by Pastor Jeri around 2PM today; the minister brought over a nifty "sphere" toy for Mom. It's a light plastic structure that can expand and contract. In its contracted form, it resembles a star or a sea urchin; when you stretch it out, it looks reminiscent of a geodesic dome (see here). Mom wasn't the only person fascinated by the toy; my entire family had a go at it.

Sean dropped by as well. His legs, burned just a few days ago, are starting to peel. He amused us with tales of the weird beads of sweat that form blister-like pouches under the dead skin when he goes running. The sweat forces the old skin away from the new skin, promoting peeling. Overall, Sean's legs look significantly better.

Not long after Pastor Jeri left, Mom went walking at Fort Hunt Park with Dad, Sean, and me. She did her regular distance of several hundred yards, following the tree shade to stay comparatively cool. We walked over to a massive oak in the park; Dad and Sean spotted a newt-- or some sort of newt-like beastie-- on the tree's sturdy trunk. They pointed it out to Mom, who cooed in muted pleasure.

Around 5PM, three of Mom's Korean women's society friends came by: Mrs. Krieger, Mrs. Raho, and Mrs. Parkbarr; they spent an hour or so talking and laughing with Mom, and like so many other visitors, they brought massive amounts of food. Our thanks, ladies, but I'll never lose any weight this way.

Mom's appetite seemed fair today, all in all; she ate her entire lunch and followed that up with plenty of fruit, courtesy of the ladies. Dinner wasn't quite as much of a success; Mom didn't finish her soup or her side dishes. Dessert, on the other hand, went very well: Mom polished off her bowl of sliced fruit and vanilla ice cream with gusto. Sometimes it's hard to tell just what Mom will like or dislike.

Throughout the day, Mom was only minimally verbal, and she exhibited signs of her usual dishwashing and counter-wiping compulsion. For some time now, Mom hadn't been showing any signs of perseveration: when she finished her meal, she'd set her spoon or chopsticks down instead of scraping endlessly at her bowl; in the kitchen, she'd wash some dishes and then willingly leave. But over the past day or so, Mom seems to have been regressing: the old urges are back. What I now try to do, when Mom gets in that groove, is simply redirect her efforts: if she wants to wash dishes, then I make sure she's using the right sponge or scrub pad to do so, allowing her to wash to her heart's content. This seems to work for the moment; I'd tried redirection a few weeks back, but with less positive results. As with her taste in food, Mom's perseveration follows its own mercurial pattern.

I hope Mom's a bit more talkative soon. I hope we're not witnessing a trend. Mom still has almost a week before she goes to Texas; if she's not in any condition to travel on September 1, this is going to be crushing for her sister. I want Mom's time away from radiotherapy to be-- however briefly-- a time of healing and recuperation, not a time of continued deterioration. That's all I want right now. Not too much to ask, I think.


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morning notes

A delegate from the Mount Vernon Presbyterian Church flower ministry arrived a few minutes ago and dropped off a lovely bouquet. She also brought up Mom's latest issue of the Korea Times from our driveway. Our thanks!

It's our understanding that Pastor Jeri will be dropping by instead of Pastor Henry Kim later today-- around 2:30PM.

The Korean ladies visiting Mom today will be here at 5PM, not 6PM (please don't bring any more food!).

Dad and I spent a few minutes discussing some upcoming renovation-related financial issues. The timing of Mom's cancer couldn't have been better, eh? Poor Mom barely had time to enjoy the fruit of all this labor when the disease struck.

Gotta go mow the back yard. Those weeds need trimming.


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beware pseudoscience

Read about the difference between legitimate science and pseudoscience (which is garbage) here.

What follows is a short list of links debunking some of the wacky therapies and theories I've been told to consider (usually by people who are well-intended but gullible) since April 16.

1. GEMM therapy debunked. (NB: I linked to this before.)

2. Aloe vera treatment for glioblastoma-- number of search results for "aloe vera glioblastoma" = zero. Why wouldn't a legitimate medical website have anything to say about this "treatment" for cancer? (Aloe vera scam alert here.)

3. The notion that "all cancer comes from problems with free radicals" is debunked in this fine Guardian UK article. Significant paragraphs:

Alternative medicine proponents have also latched on to the antioxidant fable, this notion that heroic antioxidant supplements fight sinister free radicals out to wreck havoc on the body. This is an oversimplification. Free radicals are molecules with an unpaired electron, making them highly reactive. Yes, they destroy cell walls and lead to disease. And yes, antioxidants neutralise free radicals. Yet free radicals are crucial for the body to make energy, a process that occurs in the cell's mitochondria. Also, free radicals, such as hydrogen peroxide, are a key component to the body's immune system. Too many antioxidants - that is, megadoses of supplements - disturb this natural process.

Indeed, antioxidants such has vitamin C and beta carotene have been shown to fuel cancer growth, and selenium can be toxic. Conversely, there is no evidence that high doses of antioxidants help the body in any way - except (a big maybe here) vitamin E.

What bugs me is that the people who offer these suggestions and insights do so with no knowledge of Mom's particular cancer, and with little or no idea of how to assess the worth of whatever therapy or treatment they're trying to push. For my part, I need to learn to bite my tongue and avoid being sucked into debates about these laughable quack remedies. If people are already so out of touch with rationality that they seriously believe in the power of crystals or whatever, there's little point in attempting to engage them as reasonable people.

Reading assignment: Carl Sagan's The Demon-haunted World: Science as a Candle in the Dark. True, the only people likely to take me up on this assignment are, in all probability, already reasonable people. But hope springs eternal.


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thank you, ladies

My gratitude goes out to the ladies who visited us today from 2:20PM to a little after 5PM: they were three of the new WKWS officers for the upcoming year (roughly, fall 2009 to spring/summer 2010). I'm ashamed to say that I never caught the names of the vice president and the secretary, and didn't bother to ask, but later on, Dad told me that the new president is Mrs. Sawai. My congratulations to Mrs. LaPlant for finishing her 2008-09 term, and best of luck to the new officers.

One of the ladies brought along her adorable granddaughter, Ariana (I hope I'm spelling that right). Five-year-old Ariana and I set ourselves over at the dining room table while the grownups spoke with each other and with Mom in the living room. The ladies had kindly brought along bushels of fruit and other items as well; they invaded the kitchen and prepped some of the fruit, then ate and talked and laughed, taking time to ask me about Mom's condition and to compliment the house's renovation. The atmosphere was one of easy camaraderie; the ladies themselves later noted how happy they were, as new officers, to discover how well they were getting along with each other. I'm sure this augurs well for the coming WKWS year.

Ariana and I, off in our own world, explored the intricacies of the "Mario" universe as it was rendered on Ariana's tiny Nintendo handheld game system. Ariana-- who was extremely shy for all of three minutes before opening up-- showed me how Mario, a beloved video game character dating back at least to the early 1980s if not before, was able to perform a wide variety of tasks: he could collect coins, bounce evil turtles, avoid spiked walls, and leap across the tops of giant, swaying mushrooms. The world of Mario is a bizarre admixture of Hello Kitty-esque cuteness and sudden, Jurassic-style violence. Its was a kid-friendly way of affirming that nature is red in tooth and claw, but as Ariana sagely observed, "Kids' games don't have blood in them."

Along with Nintendo, Ariana and I made blue birthday cakes with Mom's Play-Doh, surfed the Net to look at different pet dogs and talked about color coordination for dresses. "My dress is pink and black!" Ariana declared. So were her shoes, as it turned out; even her Nintendo was pink.

The ladies ended their visit by singing to Mom; I can't say anything more about the song or the singing, because it's meant to serve a special purpose. Mom and I enjoyed the music, and before we knew it, it was time for everyone to leave. Ariana's grandmother noted that Ariana was far more relaxed and open than she normally was among strangers; to me, that's a good thing. I wished the ladies good luck with their new term, and Ariana waved goodbye. The ladies' visit left a warm afterglow; Mom was happy to see them.


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schedule

In the next few minutes, an assistant for Dr. Royfe is going to drop by to give Mom something personal. We're also supposed to have a visit from the new president of the WKWS (Washington Korean Women's Society-- of which Mom was the president twice) today at 2:30PM. Tomorrow at 6:30PM, two or three more Korean visitors will be coming by. Sometime Wednesday afternoon, a member of the renovation team (though not Mr. Jeong-- the big boss-- himself) will be tooling over to take a look at the leakage problem.

That's all I know about for this week. On the personal front, I'll be mowing the back yard tomorrow morning, and the front yard the following day. The weeds grow fast when there's been a great deal of rain.

Mom's still not up. She's awake, but is in no hurry to leave the bed, perhaps cognizant of the fact that she doesn't have to head over to the hospital today. Here's hoping she'll be ready in time for her visitors... but if she isn't, I know they'll either await her convenience or truncate their stay.


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Mom's walk

My brother David came over, and after a delay caused by Mom's rapt attention to a Korean soap she had to finish watching, we headed out as a family to a new park for us-- Lake Accotink Park, which was recommended to us by David.

The park was very beautiful despite all the gnats. We lamented not bringing along some sort of bug repellent, but were otherwise impressed that such a park existed in the midst of so much development in the Springfield area.

Mom felt brave enough to tackle a set of concrete stairs that led up from the parking lot to a small ridge or berm along one arc of the lake. It must have been around 30 or 40 steps-- far more steps than Mom has tried to climb since April 16. Somehow, Mom managed the climb, though her legs were somewhat weak afterward. Dad and I had moved away from Mom after she'd made it to the top of the stairs (David had been holding her hand) when Mom suddenly lost her balance and found herself sitting on the ground. David must have cushioned Mom's fall; she was completely unhurt, and Mom was embarrassed. We helped her to her feet; she remained steady the rest of the time, but we let her rest at the first bench we came to along the berm. While we rested, David took off and came back with drinks. Mom refused my lemonade, but accepted some of Dad's Sprite.

As she did at other parks, Mom managed to walk a fairly decent distance totalling several hundred yards. We were proud of her. Our mini-trek took us along the lake's edge to the marina and picnic area (where David had bought the drinks) before we turned around again. We guys noted with amusement that the term "marina" seemed a bit of a misnomer for the tiny strip of lakeside beach at which aquaphiles could rent pedal boats or canoes: the lake itself wasn't that big, and the only watercraft were the tiny, rentable ones-- no powered boats at all, as David noted.

The drive home was a happy one; we ordered Chinese food through David's iPhone and picked it up on the way home. Mom might not have much of an appetite these days, but she's vigorous enough to tackle a tall set of stairs and walk for a good fraction of a mile. That's got to mean something.


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Mom in Fort Hunt Park with Dad and Cousin Jihae

Uncle John is also in the picture, barely visible behind Mom.

Sent via BlackBerry by AT&T

change of scene

We'll be hitting a different park today, Fort Ward Park, to celebrate the end of Mom's radio- and chemotherapy. I know Mom enjoys Fort Hunt Park, but we thought a change of scene would be nice.

We've also talked with my aunt in Texas (I'm talking about my Emo, Mom's older sister), and will be taking Mom down to Texas on September 1, barring any sudden emergencies here. We'll be spending three nights out in Conroe, leaving for Virginia on the 4th. My aunt apparently can't make it up to Virginia, which is why we're taking Mom down to see her.

We've asked Mom a couple times whether she wants to make the trip to Texas. Months ago, back when all this began, she was adamantly against it, refusing to consider the possibility of heading to MD Anderson for treatment. Since that time, we've opted to keep Mom in the DC-Metro area, which is why we're switching over to NCI's Dr. Fine (the National Cancer Institute is in Bethesda, Maryland; the drive there is about an hour, plus the time it takes to get through inspection).

So if Mom goes to Texas now, it'll be just to see her sister and her family. But when I asked Mom, a couple days ago, whether she was up for such a trip, she hesitated a long time, then said, "I'll have to think about it." When someone else posed the same question to Mom a day or so later, she simply shook her head "no."

Maybe Mom doesn't feel up to such a trip, or maybe she has other reasons for not wanting to go. I don't know. Maybe not all changes of scene are good. Or maybe she'll be fine with going to Texas once another week has passed. Mom's a bit lethargic right now; we were told that she might be this way at the tail-end of her radiotherapy. Maybe all she needs is a bit of time to recover from the near-daily bombardment of radiation she's received, for 33 sessions, at the hospital.

We'll see. In any event, Dad's getting the tickets.


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happy trails, happy visit, and... the leak

A fond goodbye to Uncle John and to Cousin Jihae; it was great to see you (and Aunt Deokhui) again. Again, many thanks for your patience with my cooking, and for doing the dishes after each meal.

Many thanks to Mr. and Mrs. Quigg for stopping by later in the day, despite the horrible weather. Mom enjoyed seeing you both. Thanks, as well, for the massive amount of meat you gave us!

Finally, a note about the house: the hard rain today seems to have revealed a flaw in the renovation: the sliding glass door that leads into our new dining room (formerly an old, grungy porch) began leaking. Strangely, the water was squeezing itself out from the top of the door frame. Dad called our contractor, and I took a quick video of the leak as it was happening.


UPDATE, 11:28PM: The contractor will be stopping by this week-- possibly as early as Monday-- to fix the problem.


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last day

Mom had her last day of standard radiotherapy today; tonight will be her final night of chemotherapy through Temodar. What happens next depends on what we hear from NCI.

There was a huge downpour when we left the hospital (my uncle and cousin were with us); by the time we had driven to the Telegraph Road exit of Route 495, there was no rain to be found anywhere. We took the scenic route, crossing Route 1 and hitting the George Washington Parkway between miles 6 and 7. From there, we drove south to Fort Hunt Park, and Mom had a chance to stroll a few hundred yards.

Mom also saw Dr. Royfe, her primary care physician, this morning. He told Dad that Mom's blood sugar problem might be related to the high dosage of Decadron (steroids) that she's taking. The doctor also observed that Mom has lost another two pounds. Her appetite is still generally good, but she doesn't always finish her meals. A net loss of ten pounds since this whole thing began isn't the best of news.

We're having filet mignon tonight. Here's hoping Mom eats her portion. (NB: I hear from my uncle that Mom ate her entire breakfast today; it was a biggie-- eggs, sausage, bacon, and French toast.)


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quick updates

Very nice to have the relatives here. Some notes about Thursday.

1. Dr. Tonnesen offered an argument for not getting an MRI immediately, which went something like this: "If you do get the the MRI done, will you not go to NCI? If you don't get the MRI done, will you not go to NCI?" The point he was making is that, in terms of our actions on behalf of Mom, an MRI at this juncture wouldn't add anything to our plan of action. The only function such an MRI would serve would be to satisfy our curiosity about the tumor's progress. This is true, and it's also true that whatever intelligence we gathered from an immediate MRI would not be actionable; a plan is already in motion, and can't be sped up. One way or another, Mom would still have to wait for NCI to do its own baseline MRI scans on Mom.

Dr. Tonnesen also said that NCI has very advanced facilities, but that its primary purpose is research; helping Mom was a secondary purpose. Was this his way of warning us against NCI and Dr. Fine?

We asked the doctor about whether we could continue to give Mom Temodar during the three-week waiting period before her scan at NCI (September 11). Dr. Tonnesen said he didn't know NCI's protocol, but he leaned toward the view that they would probably postpone any MRI in order to allow the Temodar to flush out of Mom's system. Also, Temodar presented its own risks (lowered blood count, etc.), such that continued dosage could be potentially harmful for Mom. We would have to call NCI directly to find out what they thought about giving Mom Temodar between now and September 11.


2. Dad called NCI and quickly learned that they did not want Mom on Temodar. We are, at this point, accepting the idea of not having Mom undergo another scan. Dr. Tonnesen's opinion is that the tumor won't show significant growth during the coming three weeks, assuming the radiation has beaten it down somewhat. Personally, I don't trust this opinion, given the massive growth that occurred during the eight-week period when Mom was off radiation.


3. Dad scheduled an appointment with Dr. Royfe, who has been Mom's primary care physician for years. Dr. Royfe hasn't seen Mom since before this whole mess happened, so this will be the first time he looks Mom over. Mom will see the doc tomorrow morning at 10AM. Later in the day, she'll have her final radiotherapy session. It feels as if some sort of ineffable, symbolic line has been crossed.


4. Mom had a nice-- if humid-- walk in the park. My uncle John and my cousin Jihae held her hands as we strolled.


5. Mom was somewhat talkative throughout the day, but not much. In the evening, we all spent a lot of time watching Korean dramas with her.


6. Sean came over for a bit, staying with Mom and talking with the relatives. He had a severe sunburn on both his legs, apparently from helping someone move the previous day. I've never seen Sean so badly burned.


7. The other day, correspondent "LM" wrote the following, which is an example of the "good attitude" I referred to earlier:

Good luck. My prayers are with you and your mom. Don't ever give up even if a doctor tells you it is hopeless. Keep fighting even if it seems like you are fighting a losing battle. It's a little like the Alamo. You know you are probably going to lose the battle sooner or later, but don't ever [wave] the white flag. All of those doctor app'ts, forms to fill out, prescriptions to be filled, and radiation and chemotherapy sessions to attend are tiring (for EVERYONE). But I've only got one father and you've only got one mother. I look at this time as my opportunity to help my father in a way I've never been able to before and also as a small way of repaying him for all of the loving things he has done for me during the course of my life.

Hang in there.

That's the sort of attitude I'm talking about. You have to acknowledge that this is a losing battle, but such knowledge shouldn't prevent you from doing what you can. The Alamo, indeed.


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here soon

My relatives are on the way. Blogging may be sporadic for the next few days. Or not. One never knows.


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two dates

At NCI on September 11: Mom gets blood work done, then moves right over to the MRI.

At NCI on September 16: We all sit down with the doctors for the consult.

As for getting an MRI done earlier... we'll be talking with Dr. Tonnesen at Fairfax about that tomorrow.


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our thanks

Two of Mom's friends, Mrs. Krieger and Mrs. Raho, dropped by yesterday with a massive amount of food for Mom and the rest of us. My thanks to both ladies and their husbands for their kindness and consideration.


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emailed wisdom

An email from a reader I'll call LM:

Kevin,

I just discovered your blog tonight and wanted to extend my sympathies to you, your family and your mom for what you are all going through with your mom's GBM.

I can relate as my father was diagnosed with GBM in April 2008 after surgery at Inova Fairfax Hospital following a seizure earlier that month. We live in northern Va. as well.

My father received 6 weeks of Temodar and radiation (at Fairfax Hospital) following his surgery, but shortly after that I elected to take him to the Preston Robert Tisch Brain Tumor Center at Duke Univ. because I was impressed by Henry Friedman's approach to treating this very difficult type of cancer. Dr. Henry Friedman and Dr. Fine do not see eye to eye on how best to treat GBM. Dr. Fine is much more conservative than is Dr. Friedman. Nevertheless, they are both excellent neuro-oncologists. And even though I enrolled my father as a patient at Duke more than a year ago, we still haven't seen Dr. Friedman as a patient yet. He is the architect of the brain tumor center there, but is assisted by an excellent team of doctors, PAs and nurses at Duke all committed to helping countless brain tumor patients who travel to Durham for help. They know us well at Duke.

At any rate, my point is not to to try to sell you on Duke. What I wanted to let you know is that Avastin is now FDA approved for people with recurrent GBM (which I think is how your mom would be categorized). So you don't need to get it via a clinical trial at NIH anymore. My father has received it since October at Duke off protocol and is now receiving it at the Lombardi Cancer Center at Georgetown. We've been fortunate in that it has been fairly effective at keeping my father's cancer in check even though he has suffered severe nosebleeds (a side effect which afflicts about 10% of Avastin users) and has not been able to receive the drug as often as we'd like.

Off protocol (i.e., outside of a clinical trial) it is given every 2 weeks intravenously and the normal dose for brain tumor patients is 10mg/kg. Also, they like to couple Avastin with other drugs. My father has received Irinotecan (CPT-11) and now takes a high dose of Accutane along with a low dose of Temodar each day.

Avastin has proven much more effective than Temodar for my father. As a matter of fact, he's been on Avastin for longer than surgery, radiation and Temodar combined. As you know, it is not effective for all GBM patients, but is for some. Apparently, GBM tumors with a high water content are more vulnerable to Avastin (something trained eyes can see via an MRI). I don't think my father would still be alive were it not for Avastin.

Anyway, so just keep in mind that if your mother does NOT qualify for a clinical trial at NIH with Dr. Fine, she can still get Avastin elsewhere off protocol and insurance should cover it because of the recent FDA approval for Avastin to be used on patients with recurrent GBM.

GBM is a rough diagnosis and my thoughts and prayers are with your mom, you and your entire family.

Eventually, I know that Avastin will cease keeping my father's GBM in check. His last 2 MRIs have shown small amounts of progression. When we reach that point, I will try once more to enroll him in a clinical trial for immunotherapy. Thus far, I have not had much luck getting him into any trials. For one reason or another, he has been deemed ineligible for every trial I have tried to get him into and that has been very frustrating. Just do your best and savor each day you still have with your mom. I treasure each and every day my father is still alive. And while we've been fortunate with the Avastin, he has definitely struggled during the past 16 months both physically and cognitively (not to mention the seizures).

BTW, my sisters and I all graduated from Bishop O'Connell HS. We were there in the 1980s and graduated in '85, '87 and '88 (I am in the middle).

Also, my father and I traveled to M.D. Anderson in February 2009 to be considered for a clinical trial there. We met with Dr. Conrad and, while [my father] was ultimately deemed ineligible for the trial, we were very impressed by the place and Dr. Conrad. If you develop cancer of any type and live in or near Houston, Tex., you are fortunate.

Best of luck to you and your mom. I hope Dr. Fine and NIH have a clinical trial that your mom is a good candidate for and which helps her tremendously. If you have any additional questions for me, I'll be happy to try and answer them. Keep fighting the good fight on your mother's behalf. I'm sure she appreciates all you do for her more than she could ever express.

-LM

I wrote the following reply:

Thank you for an informative email, L. Duke has come up at least twice in conversations with doctors at Fairfax. It might be a place for us to consider. At this point, Fairfax is ready to write Mom off.

We're aware of Avastin's recent FDA approval for use [with] recurrent GBM, and hope to take advantage of this, assuming that Mom will actually respond to the drug (you probably saw my link to the July 31 article about the UCLA study re: predicting which patients will respond to Avastin therapy).

Dr. Tonnesen at Fairfax doesn't think that Avastin would offer Mom more than a few extra weeks, but when I look back over the past few months, his intuitions about Mom seem to have been wrong at every turn; he's been basing his remarks more on what the charts and stats say, and less on what's actually happening to Mom. Second-line therapy of some sort is worth a shot, in my opinion. And hey, even if the treatment gives Mom only a few extra weeks, that's still valuable to us.

I'm very sorry to learn that you're going through your own GBM ordeal with your father. You have my deepest sympathy, and I wish you and your family well as you pass through this crucible.

Pax,


Kevin

LM's reply:

Thanks.

FYI: My father received his 6 weeks of radiation at Fairfax Hospital under the direction of one of Dr. Tonnesen's colleagues (Dr. XXXX). After I told one of his nurses that we were [going] to become patients at Duke, Dr. XXXX actively tried to dissuade my father from going there almost as if he was afraid of losing him as a patient (like he was a customer in an auto dealer). In addition, my father's local neurosurgeon (Dr. YYYY) said it wasn't worth it to travel either.

When I told the surgeon I wanted to throw everything at this cancer I could (including the kitchen sink), he looked at me like I was ignorant. I don't know what either doctor would have proposed when the cancer starting growing again, but I'm glad I never had to find out. They were both wrong.

Sadly, I think many of these doctors secretly dislike the prestigious cancer centers because they lose a lot of patients to them. That is money out of their pockets. So they dissuade good people from seeking them out. Ultimately, you have to do what is best for your mom. These doctors are often wrong and when they have nothing more to offer your mom besides "standard" treatment, their arsenal of weapons against something like GBM is limited. NIH has a lot of clinical [trials], but places like Duke and M.D. Anderson have even more, I think. I chose Duke because it was within driving distance. Plus, if you don't qualify for a clinical trial at NIH, you can't be a patient there. They don't treat patients off protocol.

You should go to a place like NIH or Duke that has more weapons. I wish I had taken my father to [a] different institution for his surgery. He might have been eligible for a DCVax-Brain clinical trial had I known of it back then. Immunotherapy is the best weapon against GBM if you can find a [clinical] trial your mom is eligible for.

Just remember that you have to be your own advocate. The doctors at Fairfax Hospital have limited experience with GBM patients as compared with Dr. Fine or Duke. I lost a lot of respect for my father's original doctors when they sought to dissuade me from taking him elsewhere for better treatment. Thankfully, I listened to my gut and not to them.

Good luck,

LM

Yes, we certainly know about the "be your own advocate" part. Good intentions abound in the hospital bureaucracy, but the bureaucracy itself often prevents motion when motion is needed. Its Byzantine complexity also allows too much human error to creep into the mix, something we discovered time and again as we dealt with mistake-ridden hospital reports about Mom's surgeries and other procedures, problems with nurses who didn't read charts carefully, and even doctors who didn't have their facts straight about Mom. While the overall level of care Mom has received has been very good, the mere fact that mistakes happen so frequently is cause for concern.

Thanks for your emails.


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Mom and scans

Dad spoke with the folks at NCI on Tuesday, and they said they plan to do their MRI of Mom in September. In the meantime, however, Dad spoke with someone at Fairfax Hospital who said that the radiation oncology department might be amenable to doing another MRI much sooner; we're meeting with Dr. Tonnesen on Thursday and will discuss the matter with him. I'll be pushing hard for this to happen. The main point, here, is that Mom's tumor grew as fast as it did within a matter of weeks. We can't afford to await NCI's convenience, no matter how technically correct their reasons are for waiting.

Mom herself seems to be doing as well as can be, given the circumstances. She didn't go out and exercise yesterday, but she did seem a lot better: no more headache, which I guess was just an isolated incident from the night before. She was also a lot steadier on her feet; she could probably have gone for a walk at the local park.

On a personal note, I regret that it's taken this tumor to persuade me to show Mom more physical affection than I ever used to. Hand-holding, hugging, and kisses on the cheek or forehead are now routine for me. Throughout my childhood, Mom and I had a contentious, sometimes bitter relationship, which made it difficult for both of us to express affection to each other the way "normal" moms and sons might. Our relationship reached low points both when I was an undergraduate and just before I started graduate school. For most of my early life, Mom was never easily approachable; the love she felt-- and it took years for me to realize that it was love-- was often masked by a Korean sternness and volatility that made little sense to a young, introverted American kid. Part of this had to do with Mom's childhood, which included the horrors of the Korean War as well as problems in her own family. Part of the problem was also cultural; I grew up thinking in a manner that was often very foreign to Mom. As the years have passed, however, I've come increasingly to resemble Mom in terms of personality and character. My instinctively pragmatic and empirical orientation (as well as my inability to suffer fools gladly) probably comes from her. I've noted with dawning surprise that, during much of the time that I had thought I shared my father's way of looking at the world, I was actually settling myself into a more Mom-like groove. Living in Korea for eight years served to reinforce that development.

And maybe that's why I find it easier now, after so many years, to hold Mom's hand: I've come full circle, and understand Mom better. Having lived in her homeland, I have a clearer idea of who she is. Or... maybe it's simply that whatever contentiousness Mom had retained has been stripped away by disease and surgery. Whatever the answer may be, all I know is that it's now easy, so easy, to offer Mom my hand, my hugs, and my kisses. And Mom, for her part, readily accepts these gestures in a way she never used to. This, I suppose, is one of the morbid, Monkey's Paw-type blessings to arise from our current straits. We are at peace with each other, and we both know, bone-deep, how much we care about each other.

Tonight, I hugged Mom as she was shuffling off to bed with Dad, looking intrepid in her helmet. It was our usual ritual hug-- I embraced her and said "Good night," fully expecting a "Good night" in return. But this time, I added "I love you," a sentiment to which Mom doesn't always verbally respond. Tonight, I got lucky: I heard her whisper my words back to me.

And for a brief moment, the world was right.


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what a truly "good attitude" is

Some people think that, in life, all you need is positive thinking to get what you want, or to achieve your most cherished goal. It's a nice thought, but it's also idiotic. Consider Olympic athletes: they all visualize themselves victorious, but in the end, only one person can win each event. The losers probably spent as much effort visualizing victory as did the winner, but what good did such visualization do them? It may have helped them to strive, but it didn't help them to win. It should be obvious that merely wishing something to be true, or visualizing it to be true, is not enough.

I received a phone call late tonight that reminded me of this silly mentality. I won't embarrass the person by naming him/her, but suffice it to say that the call was offensive and insulting to me, and to anyone else who has tried hard to show Mom as much love and care as possible. The caller implied that, if our hopes flagged, if we showed "weakness," we would be inviting disaster. In other words, when Mom dies-- as she inevitably will-- it will somehow be our fault that she's dead, our fault because our mindset wasn't positive enough. I'm furious as I type this. It was an unbelievably stupid thing for the caller to say.

People who say such things are usually ignorant of the situation they're talking about. When you're ignorant, you feel free to say whatever you want, causing suffering for others (and possibly for yourself) through unmindful speech. Wise people say less in such situations; they recognize the limits of their own knowledge, and try to be helpful where possible-- not hurtful.

But the unwise seem to outnumber the wise. For example, I've heard some Christians argue that, for healing to occur (as in the case of cancer or some other illness), all one needs is the power of faith. The implication is that, if disaster happens, it must be the fault of the person or people whose faith weakened. Does this seem right to you? If you're at all rational, it shouldn't. It's little more than superstitious garbage. Mom's cancer doesn't give a damn about how hopeful or hopeless I am, how faithful or faithless. There are no magical "mind rays" beaming into Mom from my head, causing her cancer to slow or to quicken. This is the twenty-first century; we should have left such thinking behind long ago. But the world is full of primitive, superstitious, magical thinkers, so this kind of nonsense persists even today.

I once taught a Korean student at Sookmyung Women's University who had applied to study at a certain high-ranking American graduate school. She told me about her hopes for acceptance to the school.

"Wonderful!" I said. "But have you applied anywhere else?"

"Oh, no!" she said. "I applied only to that school!"

"Don't you have a Plan B?" I asked. "What if you fail to get in?"

I'm not joking when I tell you that the woman squeezed her eyes shut, shook her head violently, and passionately hissed, "I can't think about that!"

Does this woman's attitude seem rational to you? Intelligent? What could possibly be wrong with preparing for a negative outcome? Lack of preparation for failure, or an inability to face the worst, isn't a sign of intelligence or bravery in my book. Relentless positivity or optimism isn't a sane way to approach reality. You hurt more than yourself when you go through life that way. As Mick Jagger famously contended, "You can't always get what you want." That's a metaphysical certainty.

Life isn't something over which you have complete control. In fact, it's arrogant to believe that your successes and failures can be credited only to you. You're a fragile, highly dependent thing, a member of an immense web of intercausation. When you succeed, it's not only because of your own will, but also because many factors have aligned in your favor: a good family background, good education, an empty job slot at just the right time, etc. When you're victorious, you're never the sole reason for your victory. By the same token, when you fail, you're never the sole reason for your failure.

It's also important to see rightly about what causes what. Can my sadness or lack of conviction spur Mom's cancer to grow faster? That's manifest bullshit, akin to claiming that plants have a telepathic sense. My attitude and Mom's cancer aren't causally linked, at least not through some sort of empathetic hocus-pocus. There might be an indirect causal link if, say, I were so depressed that I failed to look after Mom at all, thereby allowing her to slip away. But that's not what we're talking about.

Unfortunately, in this day and age, a lot of people think in this irrational, magical manner. They argue irrationally, too. Tonight's caller said, "I know about a man who was told by the doctors that he was going to die in three months, but he outlived them!" This type of reasoning isn't reasoning. Anecdotes aren't arguments. Laying out a single case doesn't prove that a separate case will have the same outcome. I feel I'm wasting my time when I hear people trot out happy anecdotes. Do they consider how such anecdotes make me and my family feel? Probably not. When Mom passes away, what will these people say to me? To my mind, there's nothing they can say. I might be able to forgive such deliberate obtuseness eventually, but it won't be easy.

So when people try to give me advice on how to have a "good attitude" toward Mom's cancer, I generally nod my head and then ignore their "wisdom." I think such people have no damn clue what a truly "good attitude" is. Here's my take as it applies to Mom's cancer.

To me, a "good attitude" toward Mom's cancer means, first, that I'll take the time to assess the situation-- to find out as much as I can about the cancer so that I can do as much as possible to help her. Knowledge is power. Irrationality is weakness-- and a sign of cowardice. I have little respect for people who can't face death. Mom has talked with me and with Pastor Jeri about the end, and she seems accepting of it. Tonight's caller said that he/she had told Mom to "fight hard," and Mom had said that she would. Well, OK... but Mom nods "yes" to a lot these days, and she probably wanted this person to feel reassured. Truth be told, Mom probably does want to fight as best she can: who doesn't want to live? But like me, Mom knows there's a difference between believing a fantasy and fighting smart.

Which brings us to the issue of actually fighting the disease. A "good attitude" toward Mom's cancer does entail fighting. We have to recognize that, eventually, the cancer will win, but this doesn't mean we should simply give up, stand back, and watch the monster consume her. If a bear attacks a child in the woods, you can bet the father will do what he can, even though he knows this is probably the end.

And fight we have. Tonight's caller doesn't seem to have read my blog very well. He/she obviously doesn't understand how hard we've been trying to seek good help for Mom, how painfully we've deliberated over our options. That's what I meant earlier about ignorance: if this person had bothered to read my blog carefully, he/she wouldn't have said anything about "giving up." If this person really wants to understand our situation, he/she should quit his/her job, come to our house, and help us take care of Mom on a 24/7 basis. But I doubt that will happen. It's easier to make comments and complaints from afar.

In the end, a "good attitude" toward Mom's cancer means being fundamentally realistic about Mom's chances, and about our chances of helping Mom score a few extra years of life. It would be silly not to plan for her decease, to be caught unprepared when the inevitable occurs. Why add more unnecessary suffering to an already-painful situation? Death doesn't care whether you face it or not, so why not be prepared for it? There's no contradiction between preparing for death and vigorously affirming life. The best life is lived in the knowledge that we always walk hand-in-hand with death. Only fear and ignorance prevent us from openly acknowledging this. Death and life are wrapped up in each other.

All in all, I don't understand why this caller even bothered to call. If the caller had actually read my blog, every day, he/she would have known better than to think that anyone in my family is giving up the fight for Mom. The very implication is deeply insulting, given all the heartbreak we've already experienced.

The caller also needs to stop being irrational and start being realistic. No one gets a remission from GBM. No one. From the day we learned what type of cancer Mom has, we've known that Mom's destiny was already written. As I've mentioned several times, the best outcome we can hope for is that she might live long enough to die of old age, but even in that scenario, Mom won't be cancer free, and she'll still be missing a chunk of her frontal lobe.

So here's a note to all of you who want to wish Mom well.

Don't say, "Fight hard and you'll recover completely!"

Don't say, "Stay positive and you'll get better in no time!"

Don't say, "You're gonna be all right, I can tell!"

In other words, don't lie-- to her, or to yourself.

You want to know what to say? Try something like this:

"I'm always, always here for you."

"What can I do to help?"

"Here I am."

And definitely try this one:

"I love you." Come visit my mom, hold her hand, look her in the eyes, and say that again and again.

Finally, there's this: our family doesn't need ignorant scolding. If you can't be constructive, shut up.


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meal plans

Dad's out and about again, this time to do some last-minute shopping for meals for the upcoming few days, and also to pick up some more household and Mom-related items.

It took a while for me to take stock of our supplies, but it was a useful exercise, as I now know what I hope to serve our guests tomorrow evening, Thursday, Friday, and Saturday morning. Here's a quick overview.

Wednesday dinner:

Freshly made budae-jjigae for everyone but poor Dad, who can't eat spicy. Side dishes will include rice, dried seaweed, kimchi, and possibly some homemade oi-kimchi (kimchi made from cucumbers) as well. There'll be plenty of budae to go around. I don't think small when I cook.

Thursday breakfast:

A French-style breakfast as I remember it from my time in France, with some additions. Fresh baguette, buttered, possibly with jam or some other confiture on top, dipped into a bowl of warm, very chocolate-y chocolate milk. Plus some fruit and yogurt on the side.

Thursday lunch:

Barbecue chicken and coleslaw sandwiches, kettle chips, and homemade fruit salad.

Thursday dinner:

Shrimp and scallops with mashed potatoes and green beans. I admit I still haven't figured out how I'm going to prep the seafood; I was thinking of doing something bacon-wrapped, since we now have an obscene amount of bacon. We'll see.

Friday breakfast:

American-style this time: eggs, bacon, sausage, potatoes, and French toast made from leftover baguette slices.

Friday lunch:

Samseon-jjajang, or three-seafood pasta in black bean sauce. Koreans call jjajang-myeon "Chinese food," but there's some debate over just how Chinese it is. Without a doubt, the black beans used in the black bean sauce are decidedly Chinese; I've had Chinese dishes in America that incorporated them. But how Chinese is the overall dish? Hard to say. Many Koreans reflexively call it Chinese, but it hardly ever appears on Chinese menus in Korea or America. One Korean woman who lived a long time in China (and who actually spoke better Chinese than Korean) told me that, in the region of China where she lived, jjajang-myeon was definitely a local dish, not considered Korean at all. China's a big place, so I grant that it's at least possible that jjajag-myeon is Chinese, but my own culinary ramblings lead me to believe it's not really that common a dish among the Chinese themselves. I could be wrong.

Anyway, alongside the noodles will be some mandu (dumplings, potstickers) with homemade sweet/spicy dipping sauce, some oi-kimchi to put atop the pasta, and some danmuji (sweet pickled Korean radish; see here).

Friday dinner:

FILET MIGNON! I'm still not sure how I'll be prepping this, but I'm thawing that monster out right now. The piece I have is about the size and shape of my arm, so there'll be more than enough for two families. For trimmings, I plan to accompany this with a vegetable medley atop a bed of couscous done up in butter and beef stock. Garlic will make an appearance somewhere.

I'm not planning desserts for any of these days, but we do have a whole rum cake waiting to be consumed, and strawberries that I can make into another lovely strawberry sauce.

Saturday breakfast:

How better to see off the relatives than with homemade Egg McMuffins and homemade fruit salad? One of the best inventions for making McMuffin-ready eggs is the microwave, which makes this task super-easy. Mix eggs and cheese, heat properly in the microwave, and you've got a crustless quiche that can be cut into little circles and placed atop English muffins along with slices of Canadian or American bacon. Bliss. Not for vegetarians.

Planning the meals is half the battle; prepping the food as far in advance as possible is also half the battle; and as Yogi Berra might observe, cooking the food well when the time comes is the third half of the battle. We'll see how this goes.


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delayed? better not be, dammit

Dad spoke with NCI earlier today, and they want to delay the MRI on Mom until three weeks after her radiotherapy is complete. Their rationale, which makes technical sense, is that Mom's brain needs time to "settle" after the in-tandem bombardment of radiation and Temodar.

What drives me nuts, though, is the idea that Mom's tumor will have three more weeks to fester and grow. I'd rather have an MRI done now, even if the images won't provide entirely accurate picture of the state of Mom's brain. With the tumor as large and obvious as it appeared on the July 20 MRI, it shouldn't be hard to discern were an MRI to be taken, say, today.

NCI is supposed to call us back sometime later today; Dad's out with Mom and I'm busy planning meals, but if NCI calls while I'm alone, I plan to push hard for an immediate MRI.


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how I spent my night

Mom went to bed with a nasty headache. It may have been caused by the tumor's continued aggressive growth, or it may have been the result of something more pedestrian. Mom hadn't complained of pain until around 11PM last night, when she woke up after having fallen asleep in the living room while watching TV with me next to her. Dad had prodded her awake and onto her feet to get her into a proper bed; the sudden combination of waking and rising may have caused a nasty head rush as the rapid change in position played havoc with Mom's blood pressure (you've probably experienced something like this yourself if you've ever been nudged awake and coaxed upright).

Dad prepped Mom for bed; I came into the bathroom as Mom was standing there in her pajamas. Dad had given Mom a Percocet tablet a few minutes earlier; even though it was too soon for the medicine to have taken any effect, I asked Mom in Korean if she was still in pain, and whether the pain had arisen suddenly. Mom nodded, signaling that it had. I cupped Mom's face in my hands and massaged her temples with my thumbs, doing what little I could for her.

Not long after that, Dad put Mom into bed, and she rolled onto her right side, as is her wont (I do the same when I sleep). Dad's back has been hurting him lately, so he adjourned to a different bedroom to lie on a heating pad, and I crawled onto Mom's bed, lying next to her and holding her hand. Mom's breathing came and went in shallow puffs, too rapidly to be thought of as a tranquil tide. I was reminded of her times in the ICU-- heart rate normal, blood pressure OK, but breathing at about 22 breaths per minute.

Neither Mom nor I really slept that much. The rapidity and shallowness of Mom's breathing wasn't indicative of deep sleep, and for my part, I saw my time next to Mom as a sort of vigil. In truth, I hadn't intended to stay there at all, but when Dad popped in to say he would be sleeping elsewhere, I decided to remain with Mom through the night. Someone needed to be by her side.

I got out of bed around 6:45AM. Mom seemed quieter, more at rest. Perhaps sometime during the night, she had sunk below her pain and managed to fall asleep. For much of the night, Mom had been little more than a shapeless mound in the dark next to me. In the morning light, though, I saw a tiny, vulnerable woman, sleeping on her side through the slow, horrible explosion happening inside her head.


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not good

Mom's about to go to bed and is complaining of a headache. Not a good sign. If her headache is from the tumor, then we can expect more and more of this as time goes on.

Dad just gave Mom a Percocet. He says the last time she had a headache was around a month ago. It's easy to freak out and conclude that this headache is tumor-related, which would be consistent with our luck thus far, but at this point I don't really know what's causing it. I just hope Mom feels better.

Wednesday can't come fast enough; we have so many questions for the doctors. One thing we want NCI to do is give Mom another MRI. I just talked over the chronology with Dad, and it seems that Mom restarted radiotherapy around July 9. The scan was done on July 20, which means the tumor's robust growth occurred during the several weeks when Mom wasn't being treated, plus the first two weeks of the restarted radiotherapy (you'll recall that chemo restarted even later than that). That's about ten weeks for the neoplasm to have reached its current size.

We were told long ago that therapy wouldn't show significant effects until around Week 3, which calls into question whether the July 20 MRI is showing us an accurate picture of the tumor as it currently is. Has the in-tandem therapy done anything for Mom? Is the tumor even bigger now? We won't really know without seeing another MRI. Keep your fingers crossed.


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definitely not

We're back from both therapy and a walk in the park. I'm beginning to think that Mom might be able to tackle a half mile of walking. She also spoke with a Korean friend during the ride home from the hospital today, and sounded pretty good.

This afternoon, just before we left for the hospital, Dad spoke with Dr. Leiphart, the neurosurgeon, and asked his opinion about whether surgery was recommended if we were seriously considering Avastin therapy for Mom. His reply was a predictable "no," so we've agreed to delay surgery until after we know that the Avastin has done some good-- assuming it actually does any good.

Dr. Leiphart (in case you're wondering how to pronounce his name, it's "lype-hart," not something else) also talked with Dad about Gamma knife therapy. In the doc's opinion, the procedure is not advisable for Mom because the benefits for GBM patients aren't obvious. He noted, however, that Fairfax Hospital does do the procedure, with the hospital calling it by a different name-- "linear accelerator." (Actually, Linac/Cyberknife isn't quite the same as Gamma knife therapy, though both techniques involve high doses of focused radiation.)

We're not deterred, though; we'll be talking with Dr. Fine's team about our options on Wednesday.


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whew: appointment Wednesday

An appointment with Dr. Fine's team-- if not with Dr. Fine himself-- has been fixed for this Wednesday at 9AM. We'll need to be at NCI around 8:30AM, if not earlier: processing in is a chore, as I recall from last time: you have to pass through a security inspection, and then there's the paperwork. Hopefully there'll be less paperwork this time, since Mom is now officially Dr. Fine's patient (she has been since we first met him), but the security inspection will still be a pain.


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a lot resolved, but much to do

It's going to be a very, very busy week, especially for Dad. We four guys sat around the dining room table this evening, within sight of Mom, and talked about several topics relating to her decline and to a host of post-mortem issues. It wasn't an easy discussion for any of us, but we somehow managed to muck through it. Not everything was settled, but it was still good, I think, for the four of us to get together and see where we all stood on crucial matters. A quick overview of the discussion follows.

1. Mom's trip to Texas: the purpose? the necessity? the pluses and minuses?

After Dad's recent talk with Dr. Conrad at MD Anderson, we've decided that it's best to keep Mom in northern Virginia for her treatment. Dr. Conrad recommended NCI's Dr. Fine-- whom we met a while back and who did take Mom on as a patient-- as the go-to guy for clinical trials and Avastin therapy. If Mom goes down to Texas, it will be for the sake of her sister, who apparently cannot make the trip back up to Virginia due to her age and her own raft of health problems.

Right now, Mom is probably in good enough shape to make such a trip, but timing is of the essence here. Her trip to Texas will probably have to occur before her bone flap replacement surgery: once she undergoes the surgery, she'll again be vulnerable to infection (but she'll no longer need her helmet) for about six weeks. During those six weeks, her cancer will continue to progress. Now, while Mom is still relatively lucid, ambulatory, and interactive, is the best time for her to see her sister. After the surgery, Mom's not going anywhere.

Another complicating factor, however, is that Mom might have to start second-line therapy (probably Avastin) fairly soon-- maybe within the next week or so. I need to confirm this, but from what I've found online, it seems that Avastin is administered intravenously, once a week. If this is so, then this limits the amount of time during which Mom may travel, irrespective of the bone flap surgery question. A short trip between Avastin sessions may be possible.


2. Hospice care: when to start?

Pastor Jeri had sent me an email in which she counseled that searching for a hospice care provider is better done sooner than later. While it feels unreal to do this while Mom is relatively vigorous, Dad and I have seen the MRI scans of her tumor growth and know that every moment counts.

We plan to talk further with Pastor Jeri, with Inova Home Care, and with Corinne, the social worker at the radiation oncology department, about hospice care. Always keeping in mind that hospices are businesses, we'll need all the help we can get to suss out the best care possible. It's our understanding that Medicare covers hospice expenses, which frees us up to find high-quality care for Mom.

We'll begin our inquiries this week.


3. Final things to do with Mom?

I wasn't able to keep my composure when talking about this with my father and brothers, but I felt it was a subject we at least needed to broach. We agreed that Mom has enjoyed her drives to different parks, so something like a road trip isn't out of the question. Again, much depends on how Mom is doing, what sort of second-line treatment protocol she's on, and whether we'll be driving in regions where hospitals are readily at hand. However, as my brother Sean noted, the advantage of a road trip is that it's easily canceled, if necessary. It's not so easy to cancel a trip to, say, Europe or Korea.

Ultimately, nothing specific was concluded here. We made no firm plans for any sort of trip or activity, but I expect we soon will.


4. Memorial arrangements and other post-mortem matters...?

We all agreed that, as far as the memorial goes, this can be arranged fairly straightforwardly with our church. There might be questions about who says what and which hymns will be preferred, but we've got a good church and I'm sure such issues can be resolved smoothly when the time comes.

We didn't, however, discuss some questions I'd had about what to do with many of Mom's possessions. This promises to be a difficult topic, due to the ambivalence that arises when a loved one dies: on the one hand, the presence of a loved one's possessions can be a painful reminder of one's loss; on the other hand, the absence of such possessions can engender an entirely different feeling of loss, and possibly also of guilt for having given away or sold the possessions in question. There's a fine line between keeping something for sentimental reasons and being an irrational pack rat. Personally, I'm not that sentimental about anyone's possessions, including my own: possessions aren't the person.

But others may feel differently, and for legitimate reasons, so it's an important matter to discuss. What to do, then, about things like Mom's clothing, cosmetics, jewelry, etc.? What purpose is served by keeping them? What purpose is served by not keeping them? These are issues we didn't cover this evening.


5. Second-line therapy...?

We asked ourselves whether it would be best to go with MD Anderson or NCI, and ultimately agreed to keep Mom at NCI, based in large part on assurances from Dr. Conrad in Houston that Dr. Fine is the man for these matters. Whether we're talking about Avastin or other therapies, as well as about clinical trials, NCI seems more likely to be the place for us.

Taking Mom down to Texas for a long period of time causes several problems. First, it's a burden on my aunt, who is apparently too frail to make another journey up to Virginia. If she's too frail to make such a trip, there's little use in asking her to care for Mom. Second, the city of Conroe, where my aunt lives, is 60-90 minutes away from MD Anderson by car, and we have no idea how often it might be necessary to make such a drive. Can my aunt and/or my cousin afford to do this? Finally, if Avastin therapy is available at NCI, which isn't that far from where we are, then why not have Mom treated at NCI? She can remain in northern Virginia, where her circle of care is, where her (adoptive) roots are, and people can visit her whenever it's possible for them to do so.

We also talked about looking into Gamma knife therapy, and Dad, who will be calling three doctors in the morning, has been charged with asking all three about this form of therapy. The time has come to look seriously into second-line approaches; first-line approaches have, we now know, proven to be a bust.

Dad has a lot of calling to do on Monday morning. He's also dropping off more information at NCI, and thus may have a chance to speak face-to-face with someone there about some of our questions. We hope to have Mom physically in front of Dr. Fine this week. NB: This week is also Mom's final week of in-tandem radiotherapy and chemotherapy.


6. Maqz the dog...?

We also discussed whether and when Sean might bring his dog Maqz over to see Mom. Mom loves Maqz, a precocious obsidian chihuahua with a snowy patch on his chest. Maqz loves Mom, too. None of Mom's sons is married, so Maqz is the closest thing Mom has to a grandchild. She dotes on that dog.

With Maqz comes the question of infection risk. Sean says he'll be sure to have his dog washed and groomed before bringing him over. My own feeling is that Mom should see Maqz well before or well after bone flap surgery, when her skin is more or less whole.


7. What to do about the house?

While I'm fine with talking openly about the state of my own finances, I'm not too comfortable writing about anyone else's, especially without their permission, so I'll write only in general terms here. Suffice it to say that, when Mom passes away, Dad will lose a significant source of income from Mom's retirement benefits, and this will affect the family's ability to handle the mortgage and other expenses. Dad told us that there is the real possibility that we might have to sell the house to make ends meet.

What a shame it would be to lose the house, with the renovation not even fully completed. Watching the house's transformation has been quite a heartening experience; losing the house after Mom's passing would be a cruel twist of fate, and would greatly add to our troubles: it would no longer be just a question of what to do with Mom's possessions, but of what to do with all the family's possessions.

We three sons therefore resolved that we would do what we could to help Dad keep the house, pitching in X number of dollars per month to keep things afloat. I'm currently unemployed, having quit two jobs just before my planned departure back out west, but I'll seek work when I'm able, doing what I can to defray Dad's expenses (as well as take care of my own mountain of debt), especially after Mom's passing. The point, though, is that we sons will all be there for Dad, and we'll do what we have to to keep the house. Imagine being forced to move out just after losing the woman you love best in the world. Not a happy prospect.


8. Bone flap surgery...?

We didn't talk about the above topics in the order in which they're listed; this topic was actually one of the ones discussed early on. David and Sean both proved somewhat hesitant about putting Mom through the risk of infection again, with Sean saying he wasn't strongly against such surgery and David saying he wasn't strongly for it. Only Dad and I seemed solidly for the surgery; David and Sean consented to the idea with no real objections, though Sean cautioned that we would need to be hyper-vigilant on Mom's behalf: another bout of MRSA would be a true disaster. Having made the decision to put Mom through this procedure, we all have to step up and do what we can to make sure Mom doesn't go through the same MRSA horror again.

How the surgery would be coordinated with the second-line therapy is a question that we hope the docs can answer either tomorrow or Tuesday. This is one of the topics that Dad needs to cover with the neurosurgeon (Dr. Leiphart), the infectious disease specialist (Dr. Yoho), and Dr. Fine at NCI. Dad will also ask Dr. Conrad his opinion early this week.

---

So there we are. That's a brief overview of a discussion that took us from dinnertime until almost 10:30PM. There's more to talk about, much more, and as the situation changes, we may have to revise some of the conclusions we've reached. But a partial action plan is in place, and as we nail down dates for therapy and surgery and a trip to Texas, we'll have a calendar to take us through... well, through the next little while, however long that might be.


UPDATE, 1:58AM: I may have answered our Avastin/bone flap question. According to this site, Avastin cannot be administered until well after surgery:

Do not initiate therapy until at least 28 days following major surgery and after surgical incision has fully healed.

Avastin has been associated with various hemorrhages and even gastric perforation-- a frightening prospect for us when we think of what Mom has already gone through. Whether Avastin is even worthwhile for Mom is a huge question, since about half of all brain cancer patients don't respond to Avastin therapy. A team at UCLA, however, has developed a way to tell which patients will respond favorably to Avastin. Read the July 31, 2009 article here.

Putting these articles together, I surmise that the best course of action may, in fact, be to bow to David's and Sean's misgivings about bone flap surgery-- at least for now. As they both pointed out, second-line therapy is the current priority, not Mom's bone flap. If Mom proves responsive to Avastin and experiences some tumor shrinkage, it might be possible, at a later date, to have Mom undergo the operation. But from what I've just read, it sounds as if bone flap surgery is off for the foreseeable future.


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the talk

In a few minutes, we four guys-- Dad, my brothers David and Sean, and I-- will be discussing some rather important matters related to Mom. She'll need to be seated away from us for most of the discussion. Even though she probably wouldn't comprehend the specifics if she did sit with us, I still don't want her nearby.


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shout-out

Our thanks to Kathy Carriere for driving all the way down from North Beach to visit with Mom today. Mom was very happy to see her friend and former coworker.


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a heads-up to visitors

Just an FYI: We'll have relatives from Texas here this coming week, starting on Wednesday the 19th. They'll be here for a few days-- three nights, if I'm not mistaken.

This coming week, we're also going to be dialoguing rather intensely with both MD Anderson and NCI; we may even be taking Mom up to NCI while the relatives are here. We'll also be finishing up Mom's radiotherapy this week-- her final five days. In other words, this week promises to be extremely busy, so PLEASE CALL WELL IN ADVANCE if you want to see Mom-- at least 24 hours in advance. We have no idea when we might be home, so please leave messages or send emails if we're not able to answer the phone.


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fleurs

Many thanks to Mom's friend Doong-ja for the lovely bouquet that arrived yesterday, just in time to be put on display for our guests.


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up very late

Mom woke around 9:30AM according to Dad, but she apparently didn't get out of bed until around 11:30 today. I woke up even later-- around noon. Mom seems to be doing about as well as she was doing yesterday. She and Dad both ate a late lunch at the kitchen's new bar; Mom had the last of Mrs. Bishop's fantastic Brazilian fish stew (I want the name and recipe!); Dad had two sandwiches. Both parents ate the fruit salad I'd concocted yesterday; we have so much fruit, and we can't eat it fast enough when it's fresh, so a good portion of it has to be turned into something else, be it fruit salad or banana bread or some kind of sauce.

Sean was here for a while yesterday, and one thing he noticed was that Mom didn't "chime" after she finished her soup. We call it "chiming" when Mom finishes something in a bowl or a plate, then continues to scrape the bowl's bottom with her spoon-- another example of perseveration. Today as well, Mom finished her soup and set her spoon down without fanfare, simply waiting for the fruit salad to appear.

Right now, Mom has wandered over to the dining room, where I'm sitting and writing this entry. She's pulled a copy of Water from a Skull over to her, and is flipping through it. Before her cancer, I don't think Mom bothered trying to read the book. She may have attempted a few pages, but Mom's not really the type to read much written English, unless it's in magazine form. Generally, Mom prefers the Korean newspaper when she wants to read something. But right now, here she is, waiting for a guest to arrive and flipping through my book. How much of it does she understand? I just asked her, and she answered, "Well, I'm not really looking. Know what I mean?" I suspect that a lot of the people who bought my book are in the same boat. Heh.


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...and belatedly

If you're Catholic, you're celebrating the Feast of the Assumption today (15 August).

If you're Korean, you're celebrating Korean Liberation day. Will Lee Myeong-bak offer any thanks to the countries that helped liberate South Korea? Recent Korean presidents have avoided mentioning the countries that helped Korea, leaving young Koreans to believe that Korea somehow liberated itself. Review the August 15 speeches by Roh Mu-hyeon to see what I'm talking about: there's not a single word of gratitude toward America or any other country. All the same... I'll be a good sport and wish South Korea a Happy Liberation Day. You're welcome.

According to Wikipedia, August 15 is also VJ Day.


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thanks, ladies!

Many thanks to Jemma Bishop, Cheong Burns, and Susan Strausbaugh for visiting today, and for doting on Mom. Thanks, as well, for all the food you brought. I know that Mom thoroughly enjoyed all the loving attention; it's just what she needed on a beautiful Saturday.


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prepping

We've got guests coming over in less than an hour. The upstairs has been cleaned (thanks primarily to Dad), and the parents' respective lunches have been made. Now I need to clean myself up, then cut up some fruit and prep some of the cake Dad made for our guests. Will write later, when things settle.


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note to self

Read this page thoroughly. Be prepared to discuss with folks at NCI. Of interest:

A new approach for delivering antiangiogenic agents to gliomas uses naked plasmid DNA targeted to brain tumors via intra-arterial injection. The intra-arterial delivery of the gene for endostatin, a suppressor of angiogenesis, was recently investigated in a rat gliosarcoma model. Administration of the endostatin gene resulted in an 80% tumor volume reduction, and survival time was up to 47% longer.

Reference: Barnett FH, Scharer-Schuksz M, Wood M et al. Intra-arterial delivery of endostatin gene to brain tumors prolongs survival and alters tumor vessel ultrastructure. Gene Ther 2004;11:1283–1289.

That was 2004. Now it's 2009. Progress...?


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if you're interested

A gent named Mark Miller has been documenting the progress and treatment of his own brain tumor since 2007. For him, the tumor started off as a grade 3 astrocytoma, then transformed into a full-blown GBM (all GBMs are grade 4, the most aggressive type of brain tumor there is, so there's no need to say "a grade 4 GBM").

If you're interested, Mr. Miller's blog is here. The site contains plenty of brain cancer-related resources, including some literature on Gamma knife therapy that caught my eye. I don't completely agree with his attitude toward his own (and others') cancer, but Mr. Miller's blog is honest and informative.


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watching him from afar

I've quietly monitored Ted Kennedy's struggle with glioblastoma multiforme (GBM) since I learned that his tumor was the same type as Mom's. I found it significant that the poor man was in no condition to attend his sister's funeral. The memorial service in honor of Eunice Kennedy Shriver took place yesterday. I fear that her brother won't make it through 2009; he was diagnosed in May of last year, having presented with seizures (much as Mom presented with an altered mental state and aphasia), and thus far has managed to survive fifteen months with what I imagine is, at this point, a very advanced GBM.

I saw a recent video of Kennedy; it was taken by some well-placed cameraman as Kennedy's car was driving by, with Kennedy himself in the passenger seat, his window opened to the multitudes. What I beheld saddened me: Kennedy was at least marginally aware of his surroundings, but was slack-jawed and mostly unreactive. Watching his progress from afar gives me and my family a grim preview of what is to come as Mom's own decline continues. We're on the same roller coaster as the senator, approaching the same drop. And as everyone can see, even fame, political power, and riches can't stop the inevitable. I'm sure that Senator Kennedy has had the best healthcare money can buy. It's a testament to the viciousness of this type of cancer that even the very best is not enough.


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holding hands

After our delayed radiotherapy appointment, Mom and I drove through snarled traffic until we were close to our neighborhood, then wended our way over to Fort Hunt Park. I was surprised to see how few people were there; it was a gorgeous Friday afternoon.

Mom and I walked hand-in-hand along the perimeter road, probably covering a few hundred yards as we strolled away from and then back to the van. The day was quiet and beautiful. So was Mom.


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a busy Saturday ahead

Dad and I had originally hoped to use Saturday as a day to clean the house from top to bottom in preparation for the August 19 arrival of relatives from Texas, but a few friends want to visit Mom on that day, so we're switching to more of an "open house" format. Four or five people will be arriving around 2PM. I'm not sure how many of them know each other, but they're all people that Mom has known for many years.

In a sense, the visits won't disrupt our plans to clean: the upstairs, at least, will need to be presentable for our guests, so we'll have to clean it, anyway. We can also continue to clean after the guests depart. Luckily, there isn't too much that needs to be done; the upstairs is already fairly tidy. The only real concern is the floor which, being a hardwood floor, requires constant attention. As with any rugless floor, hardwood floors show every single speck of dirt. I remember being against the parents' choice to have a hardwood floor upstairs for precisely that reason, but there's no denying that the current floor looks pretty good.

When it's clean.


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delayed

Mom's radiotherapy session has been moved to 3:20PM today. The machine is once again acting up.

Dr. Tonnesen had told us that, if we were to stop the radiotherapy right now, with several more sessions to go, he wouldn't think we were crazy. The neoplasm has shown robust growth in spite of the radiation, which means the radiation and chemotherapy have been ineffective. From the doc's point of view, therapy isn't worth continuing.

Last night, I asked Dad whether he wanted to see the in-tandem therapy through. He said he did. That's fine by me. It's a bit like defending yourself from a tiger with nothing more than a wet noodle as a weapon, but if the idea is to go down fighting, then I approve.

Dad has sent data down to MD Anderson and has also talked with the National Cancer Institute about Mom, updating the respective offices of Dr. Conrad and Dr. Fine as to Mom's condition and the cancer's progress. MD Anderson requested the most recent data from Dad, so yesterday he went to the local Kinko's/FedEx, burned a copy of the MRI CD-ROM, and sent the copied CD plus the 2-page written report from July 20th down to Texas. He also spoke with Dr. Conrad this morning; Dr. Conrad said he had seen the data and agreed that the situation was dire. His recommendation would be Avastin therapy as a second-line treatment, but he also recommended that Dad talk with Dr. Fine at NCI-- "He's the guy" for this sort of thing, according to Dr. Conrad.

NCI said it wanted more than just the most recent data, so Dad is once again out, burning CDs and prepping a copy of the massive, 700-page collection of doctors' reports and notes from Fairfax Hospital, this time for NCI's Dr. Fine. Dad will then drive over to NCI himself to make sure the information is delivered today.

This leaves me to take Mom to the hospital alone. Luckily, she's ambulatory, so today, this won't be a big problem. Mom and I can drive to the hospital and walk in together. If it turns out, for some reason, that Mom is suddenly weak, we've got a wheelchair in the van.


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achievement

In the midst of all the sadness about Mom's prognosis, I should note that Mom took her first trip downstairs to our basement/family room since this whole mess started on April 16. The stairway is thirteen steps long; descending to the basement was the easy part. Mom made it down and looked around in wonder, probably noting what a mess everything still was, what with piles of boxes left over from the renovation which, technically speaking, still hasn't been completed.

Mom and I wandered over to the laundry room, which also houses two old refrigerators. Mom opened each fridge up, one door at a time, and examined the contents intently. She couldn't help rearranging the items inside one of the freezers, but I think her fingers became too cold for her to keep at it. She stopped herself after barely a minute.

Eventually, I suggested that we try going back upstairs. Mom nodded, her loose helmet bobbing precariously, and we began the ascent. I stood close behind while Mom trudged upward: step, step, step she went, one hand gripping the rail. Somehow, she made it to the top, even though it was obvious that her legs were close to giving out. It was quite the feat: up to now, Mom hasn't climbed more than five steps since mid-April. It'd be nice to see her do this more often to condition her legs. Today's stair-climbing session was also a reminder to me of how fleeting our bodily strength is, how easily we take our ability to do simple things for granted.

Perhaps for that reason, that we shouldn't take simple things for granted, today's athletic achievement was a proud moment for Mom, and for me. She made it up thirteen steps, and that's wonderful.


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a talk with the neurosurgeon

Today's drive to Dr. Leiphart's office at the George Washington University Medical Center reminded me of why I dislike driving in DC. DC's layout was originally conceived by a French-American named Pierre L'Enfant (his name is immortalized at the locale called L'Enfant Plaza). Like the French designers who laid out Paris's haphazard network, L'Enfant cursed DC with a massive hash of diagonals and circles superimposed on an otherwise-rational grid, creating some of the most awkward intersections in America. Later on, we Americans compounded the problem by messing with the simple traffic rules that govern rotaries (ronds-points in French-- circular intersections with only two rules: traffic circulates in just one direction, and those inside the rotary have the right of way), eventually leading up to the urban mess we know and love today. As far as driving goes, DC sucks.

Nerves jangling from the drive, I managed to halt the van in front of Dr. Leiphart's building. I then dropped Mom and Dad off at about 2:05PM and found parking a few blocks away; GW is a parking nightmare. I walked back to the medical building and found Mom and Dad around 2:15PM; our appointment was at 3, but we still had to wait an extra hour for Dr. Leiphart to show up; he apparently has a huge patient load. Close to 4PM, the doctor walked into the exam room.

We learned little during our conversation with the neurosurgeon that we hadn't already heard from Dr. Tonnesen. I asked some questions about what sorts of symptoms we might anticipate during Mom's final decline; I was worried that Mom might reach a point where she began to experience violent mood swings and the like. Such a thing hasn't happened thus far, thank goodness: if anything, Mom has never seemed more worry-free than she now is, and in a morbid way, that's been the one great blessing from this horrible disease.

Dr. Leiphart said that, in his experience, violent mood swings aren't part of the profile for brain cancer patients. Such patients tend to become less active and more withdrawn over time. I might be a bad person for saying this, but I find this to be a relief. Dealing with unbridled emotions on top of all Mom's other problems (many of which remain tastefully unblogged) would be an impossible burden. It's bad enough when other people we know slide into irrationality in the face of crisis. If Mom has the most level head among us, then all the better. Her calm keeps the rest of us calm.

We talked about bone flap surgery. Mom's recovery period-- if we decide to have the surgery-- is expected to be around 6 weeks. The operation should be relatively simple this time: a single major incision, then insertion of the synthetic bone, followed by suturing. (In theory, the synthetic bone is already prepped and ready to go, but Dr. Leiphart told us he needed to confirm that.) Now that we know about Mom's susceptibility to infection, we have a better idea of how to prepare for it. As to whether such surgery would be worth the effort, cost, and time, Dr. Leiphart offered no opinion, leaving such a decision up to us.

We also asked about second-line therapies. The doctor mentioned NIH/NCI as one possibility, and also mentioned Duke and UCLA as places where cutting-edge therapies were being tested. MD Anderson also got a mention, though more as an afterthought, because Dr. Leiphart couldn't recall whether the facility was currently doing clinical trials related to GBMs.

"She looks good," Dr. Leiphart noted, though he also affirmed that Mom's prospects were grim. For us, this means that Mom's relative lucidity and functionality are to be treasured while they last.

We left the office a bit after 5PM. Parking on campus was hellishly expensive, so Dad's wallet took quite a hit. All that was left for us was the nerve-wracking drive back home.


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two appointments

Mom is currently receiving her radiotherapy; her appointment was rescheduled from the usual 2PM to 11:20AM because she has a 3PM appointment with her neurosurgeon, Dr. Leiphart, at the George Washington Medical Center.

I have no idea what's left to discuss. The question of whether to put Mom's bone flap back in seems of dubious relevance, given what we now know.

Then again, Dad made the point that Mom would feel better, knowing that her head was whole. I've seen Mom staring at her reflection and shaking her head in sadness or disgust. She still retains enough sense of self to feel some pride about how she looks. Dad may have a point: Mom might feel better about herself if her skull were intact.

But would such surgery be worth the effort? I don't know. I don't know anything these days.


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"months"

Two of Mom's friends, Dale and Pat, visited earlier today (thanks for the food, ladies!). Dad didn't have the heart to tell them the news we got today from Dr. Tonnesen, who very suddenly summoned us to his office (we had thought he wouldn't be able to meet us this week, but I guess he found the time).

The news is basically this: the doctor has now had a chance to review the latest MRI, and the tumor appears to have been showing "exuberant" growth despite the radiation and chemo. It's "been growing right through the radiation," according to him. He acknowledged that he ought to have looked at the images earlier-- that the words of the report didn't convey the same import as the images, which clearly showed the severity of the problem. But as we discussed the chronology of the tumor's growth, it became evident that Mom's fate was probably sealed as much as a year or two prior to April 16.

As I'd already noted in previous posts, the tumor has indeed spread across the corpus callosum and into the right hemisphere. We all knew this much-- have known it for weeks, in fact-- but didn't have a clear idea as to the true extent of the neoplasm (new cancerous tissue). We now know: the size of the new growth is currently comparable to the growth that Dr. Leiphart removed in the original debulking. With each tumor cell doubling periodically, and with the tumor as robust as it is, we can expect the cancer to win its battle with Mom within a short period of time. How long? "Months," according to Dr. Tonnesen-- possibly less than six months. We'll be lucky to have Mom around at Christmas.

A lot of today's discussion focused on what else could have been done, and whether second-line therapies like Avastin would be of much help. Dr. Tonnesen leaned toward the view that second-line therapies wouldn't do much to extend Mom's life-- a few weeks or a couple of months at most-- and that that extended period would still be marked by a deteriorating Mom with little capacity to appreciate what was being done for her. What would be the point of extending her life a few weeks or months if her quality of life promised to be miserable?

Dr. Tonnesen also noted that, even if Mom's tumor had been caught a few weeks earlier, the same situation would have arisen, though it's possible that the tumor's growth could have been delayed a few weeks. The tumor itself is following a relentless mathematical progression, increasing in size by powers of 2 as its cells divide and divide. This cancerous process started long, long before Mom's symptoms appeared on April 16; a brain scan taken a year or two ago might have caught a tiny white spot inside the brain, but even such an early sighting wouldn't have altered the ensuing course of events. GBM is deadly-- period. Once you've got it, you've got it.

We also discussed whether it was worth the effort to restore Mom's bone flap. As you might imagine, Dad and I reached no conclusions on this topic while in Dr. Tonnesen's office; we were still absorbing the import of Mom's latest prognosis.

There's a lot to think and talk about. Should the bone flap be put back in, only for Mom to have to undergo another arduous antibiotic regimen near the end of her life? Should we bother taking Mom down to MD Anderson when we already have a good idea that they won't be able to do much for Mom? Should we look into hospice care? As always, the cancer leaves us little time to make important decisions.

I don't know how many of my readers have held the hope that, somehow, Mom will miraculously snap out of this and spontaneously get well. While I acknowledge how natural it is to think so wishfully, such thoughts are pure fantasy. For me, the main impact of today's session was that we finally had a specific time frame to use as a guide for Mom's decline. The prognosis answers certain existential questions, such as "Was this past May 4th Mom's final birthday party?" or "Is this Mom's final summer?" But those questions are minor compared to the fundamental yes/no question: "Is she going to die?" We received the answer to that question early on, when the early biopsy results confirmed that the mass inside Mom's head was indeed a GBM. All that was left was to settle whether Mom's death would be sooner or later. The answer is sooner.

Just a reminder: the median life expectancy for GBM patients is about 13 months, post-diagnosis. That's a statistical average-- an indication of how things might go, not a guarantee. Many GBM patients will last beyond that average, but many will also fall below it. Mom was dealt a bad hand: she's got a super-aggressive tumor, and it's intent on taking her down fast. While I hesitate to say that there's a bright side to any of this, we can take some comfort in the fact that this will happen quickly, and that Mom's blunted affect and awareness will make the experience less frightening for her than it might otherwise be.

Dr. Tonnesen had put Mom in an exam room off to the side so that he could break the bad news in his office, to Dad and me alone. You'll never know what it felt like to receive this prognosis, then to walk back out to the waiting room to see Mom standing there, alert, smiling her happy smile and poignantly unaware of what we had been discussing. Mom seems to be doing so well right now. It's hard to believe that, this Christmas, there might be only four of us around the Christmas tree. Just us guys.


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every 2 months

Dad spoke with someone at MD Anderson this morning; he asked how often MD Anderson performs scans on its GBM patients during their radio- and chemotherapy; the answer he got back was "every two months," but if the patients show signs of infection (as happened to Mom), they are immediately referred to the infectious diseases department. The protocol there seems to be about the same as what we're going through here. Infrequent scanning during therapy isn't abnormal.

It still rankles me, though, that a doctor would dismiss a recent scan by saying something like "We normally wouldn't even take such a scan at this point in the therapy." So what? The scan is there; it was done for a reason, not frivolously, so it's supposed to be of use to someone. And shouldn't a good scientist think that more information is better than less information? The scan report clearly mentions that the tumor has progressed in multiple areas during the time that Mom was on her dapto regime. This isn't important information?

I'm sitting here, shaking my head in bitter wonderment.


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great

It appears we won't be able to talk further with Dr. Tonnesen this week. The doctor is otherwise engaged.


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gracias

Our thanks to Mrs. Burns for dropping off some Korean snacks-- red bean-filled goldfish pastries (just goldfish-shaped-- no actual goldfish are used) and ho-ddeok, one of my favorite street foods.


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