Saturday, May 9, 2009

coming back

Mom and Dad will be arriving at National Airport on Continental Flight 558. Arrival time is 8PM. I'll continue writing, polishing, and uploading the transcript (see below) sometime later this evening.


Friday, May 8, 2009

M.D. Anderson: the aftermath

I spoke with Dad a few minutes ago about his and Mom's visit to the M.D. Anderson Cancer Clinic in downtown Houston. The consult was constructive and informative overall; it's possible that we will be working with the clinic again. In the meantime, however, it seems that the best strategy is to get Mom home to northern Virginia, let her have her meeting with the radiotherapist (Dr. Tonnesen) on May 13, and have her start the 6-week phase of in-tandem therapy (radiation plus chemo) through a combined effort involving Fairfax Hospital and NIH/NCI. The latter's role will, at least for the moment, be more about monitoring Mom's progress than about administering treatment. Drs. Tonnesen and Meister (Temodar chemotherapy) will handle the actual treatment through Fairfax Hospital.

Mom got her scalp/skull staples out today; according to the folks at M.D. Anderson, the staples had been in there a mite too long, making them difficult to remove. But the job was done, and Mom is now staple-free. She can't wash her hair until tomorrow, alas, and she's been warned against coloring her hair for the next several weeks. I've been quietly pushing for Mom simply to shave all her hair off and pretend to be a Buddhist nun, but she's having none of it. I told Mom that she could be like pop star Tina Turner, who is (or at least was) bald and who uses all manner of big-hair wigs. Mom shook her head disdainfully at the idea.

She did, however, consent to wear a wide-brimmed hat when we drove her and Dad to the airport on Thursday. That's a step in the wig-ward direction, I think; once clumps of hair begin falling out during the radiotherapy, she might be persuaded to go all-out and do the Big Shave. I won't push her too hard on this point, but I'm sure she'll make an aesthetic calculation and conclude that being bald is better than walking around with patches of hair missing (targeted radiotherapy doesn't make a patient lose all her hair; it affects only those areas of the scalp targeted by the machines, resulting in patchy hair loss, not complete hair loss). Cancer clinics have, among other features, shops that sell various types of headgear, from hats to bandannas to wigs, for patients looking to conceal what is happening to their scalps. Mom might be persuaded to visit such a store in the very near future.

Dad wasn't able to record the entire session with the doctor at MDACC today; my voice recorder's batteries apparently ran out on him. When he brings the recorder home tomorrow, we'll have to see how much was recorded. I got the impression, in talking with Dad, that he generally liked MDACC very much, but that he wasn't convinced that it was light years ahead of NIH/NCI or Fairfax Hospital. At no point did he say, "We have to move Mom here right now!" I'll need to talk further with Dad tomorrow to know whether my impression of his opinion is correct.

For me, today was basically a day to hang out with my brother Sean, who came over around 11:30AM. We went out to see the new "Star Trek" movie, which turned out to be pretty good, though perhaps not as good as "Star Trek II: The Wrath of Khan," a film that has attained nearly sacred status in Trekkie lore. I wouldn't call myself a serious Trekkie, but I am geeky enough to pick up on the newest movie's many sly and overt references to "Star Trek II" and to other "classic" Trek films.

But having a mom with cancer makes me watch TV and movies differently. Watching "House," for example, can tug at my heart these days, especially when the "guest victim" is a cancer patient. Looking back at "Battlestar Galactica," I sense more keenly the trials of President Laura Roslin-- the tough broad with breast cancer who often seemed to cling to life out of sheer stubbornness. And in watching "Star Trek" today, I couldn't help feeling empathy for one of the main characters, a son who does his desperate best to save his mother, yet fails.

Of course, it's just TV, just movies. But we see the world through the filter of our current situation, and in my and my brothers' case, that filter now includes brain cancer.

My parents will be home tomorrow evening; I'll drive out to the airport to pick them up. Once they're home, I'm sure they'll both have more to tell me about what they thought of MDACC, and whether having Mom remain in Texas seems like a viable long-term option.



No word yet from the parents as to how their visit to the M.D. Anderson Cancer Center is going (it's happening right now). As my brother Sean just reminded me, Mom is also supposed to have her staples removed today. This is an outpatient procedure; all the docs have said it's a breeze. All the same, I wish my folks good luck, and hope their day is profitable.


Thursday, May 7, 2009

homeward bound

Dad and Mom arrived safely in Houston, where it's extremely humid and in the 90s. They're on the road as I write this, making their way to Conroe, where they'll stay a couple nights with my aunt and her family. Tomorrow, they're off to the cancer center.


up next

Starting sometime later this evening, I'll begin writing up the transcript of Dr. Fine's meeting with us yesterday at the National Cancer Institute. Right now, I'm taking a bit of a break.


a request re: sudden, unannounced visits

Mom thoroughly enjoyed her Monday birthday party, a lengthy affair that occurred in stages and may have involved up to nine visitors, all arriving at staggered intervals. The next day, however, Mom said, "Please tell people not to come today." I think we ended up with visitors on Tuesday anyway, but this is mainly because we hadn't yet sounded out Mom's reasons for why she felt this way.

As it turns out, Mom was (understandably) tired from all the activity on Monday. I think she is also, generally, a bit stressed out by the sheer number of calls and visits that have occurred since news of her cancer became public knowledge. I'd add, as a personal note, that Mom does a great job of worrying about other people, but can't stand to have other people outside her immediate family worrying about her. Those who have seen or called her since her operation (and just before it, too) know that she has tended to end conversations quickly, and has often seemed to be shooing people out the door in ways both subtle and brazen. These behaviors reflect her discomfiture regarding others' sympathy or pity, so please don't be surprised if she doesn't act like Morrie Schwartz from Tuesdays with Morrie. Dr. Schwartz tended to welcome all comers, even involving them in the frequently messy day-to-day aspects of his care as his body atrophied from ALS. Mom would never do that, no matter how bad things got.

So in talking with Mom last night, I discovered that she's not too keen on having many visitors, especially unexpected ones. Some of her close friends have, understandably, tried to drop by with little or no warning, sometimes just to chat, sometimes to drop off dinner. This is extremely thoughtful, and I know Mom appreciates this. But based on my talk with Mom, I get the impression that she'd rather have the torrent reduced to a trickle.

In the interest of managing these visits better, and in order to give Mom the chance to say yes or no to them, I'd like to request that all potential visitors please give us at least 1-2 days' advance notice of their intention to drop by. Close friends of Mom might be put off by this, and I apologize, but she does have a point. After all, kindness and consideration aren't the same thing: sometimes, in trying to be kind, we fail to be considerate-- e.g., by not asking whether the family has already made dinner for Mom (we've already had some problems storing the veritable mountain of food we've received from many different sources), or giving us only five minutes' warning of impending arrival, etc. Were Mom healthier, this would be less of an issue, but right now, I'd ask everyone to respect Mom's wishes and to give us 24-48 hours' advance notice before trying to come over.

A note to people who have already dropped by unannounced: please don't feel bad. No one's upset about anything. Our feeling is that it's better to communicate all this now-- to set boundaries now, before this becomes a real problem-- than to grouch about it later on. Communication is always better than a lack of communication.

You can contact us through the email address listed on this blog's sidebar, or via our various phone numbers, if you know them. (Email me if you need one of our numbers.)

Thanks, as always, to all of you.


...and they're off

Mom and Dad got on the plane successfully. Boarding might not be a big thing for you, but when you're flying on stand-by status, waiting to see whether any seats are available, the mere act of getting on a plane becomes an adventure.

Luckily, Continental Flight 1059 to Houston had 17 empty seats at the time of check-in, and only 7 passengers on stand-by. I'm not so worried about how things work out on the way back from Texas; the important thing was to get Mom to Texas to be on time for tomorrow's appointment, which Dad had made about a week ago.

We hugged Mom, wished her luck, and told her we were proud of her. I drove back home with Sean; he grabbed a salad at the airport and munched on it in the car. Sean has cello lessons to teach today, so he'll be gone for a few hours, but he'll be back again this evening to take Maqz the chihuahua back home with him (Sean lives in DC). I don't know whether he plans to bring Maqz back when Mom is back home, but I imagine the dog will be making another house call soon.

In some ways, Mom seems to be improving. While we sat at a Starbucks at the airport, she looked at my over-forested scalp and said, "Don't cut your hair. I'm gonna give you a haircut when I get back." I'm looking pretty shaggy right now, shaggy in a "plump Bruce Lee" way, mainly because I've been waiting for Mom to start the in-tandem therapy so I can show some solidarity with her. She doesn't want this; she simply wants my hair to be its normal, tame self. But the fact that she's thinking critically about my hair is a good sign. The fact that she took a break from TV yesterday to go outside, stand on our new deck, and contemplate the back yard was a good sign, too. Little by little, Mom is coming back to herself. I don't know whether she'll ever be 100% back, but I'll take what I can get.

I'm expecting a call from the folks when they arrive safely in Conroe. Let's all keep our fingers crossed, and hope that the visit to the M.D. Anderson Cancer Center proves fruitful, even if Mom ends up decides that staying in Alexandria will be best.


movin' out

We're on our way to the airport. I'll be dropping the parents off (my brother Sean is coming with us), then heading back home. Mom's appointment at M.D. Anderson is tomorrow morning.

Wish us luck.


Wednesday, May 6, 2009

our work cut out for us

The visit to NIH/NCI (National Institutes of Health/National Cancer Institute) this morning was very productive, despite the bureaucracy.* We met with Doctors Chowdry, Iwamoto, and Fine. All were quick to answer questions and explain what lies ahead for Mom. Dr. Fine seemed ready to take Mom under his wing right away, and while we haven't formally settled on NIH for any aspect of Mom's treatment, Mom signed the consent form that makes her part of an ongoing NIH research project related to her type of cancer. Mom's particular type of GBM (glioblastoma multiforme) may be of the "giant-cell" variety; if this is the case, her prognosis might-- might-- be better than we first thought. Dr. Fine wants to send Mom's data to a hospital in Boston (Mass. General? if so, that's where Ted Kennedy is being treated) to have his suspicion confirmed. The doctor also pooh-poohed the fat droplet and DMC treatments. In his opinion, there hasn't been nearly enough research for patients to give those alternatives serious consideration.

Dr. Fine strikes me as a very experienced, competent doc-- perhaps a bit too quick to talk and not listen (he tended to override the questioner in his haste to convey important information; like many veteran lecturers, he didn't really check our comprehension, which is the mark of a teacher), but obviously committed to solving the riddle of GBM and other cancers. I plan to transcribe his spiel for you, since I have it on audio and he spoke at great length. Perhaps you, Dear Reader, can read the transcript and help me in evaluating the very positive tone he took with regard to Mom's case.

One of the more important points made today was that we now have to get Mom ready for the start of her in-tandem protocol: radiation and chemotherapy. For six weeks, Mom will undergo both, and intensively so. She will then enjoy about a month's rest, after which she will be exclusively on Temodar for the first five days of every 28-day period (i.e., for every lunar month). The chemo-only therapy will last the better part of a year, with Mom being evaluated periodically by MRI to see what sort of progress has been made. All three doctors noted that the tumor can never be entirely killed off; Dr. Fine noted further that, according to research, each GBM tumor is unique-- a species unto itself, right down to the genetic level, making it hard to offer patients treatment beyond the generic standard. At the same time, this discovery is good news because it alerts researchers to the need for more idiosyncratic therapies. Finding out what technique works for whom is apparently a big part of current GBM research, which brings us back to Mom's having volunteered to be part of the NIH project. I'm proud that she's doing this.

Mom and Dad will head down to Texas tomorrow afternoon. We'll leave the house at noon, and I'll drive back to tend the homestead after dropping the parents off. When they arrive in Houston, Dad will likely rent a car; our relatives live in Conroe, just north of Houston, and the southward drive into downtown for the morning appointment at M.D. Anderson promises to take about 60-90 minutes, depending on traffic. This means the parents will have to wake up very early, and Dad would rather not impose on my cousin by asking her to take off work to act as a chauffeur all day. DC traffic is horrible during rush hour; if it's true that Texans do everything bigger, then Houston might give our area a run for its money.

I'll be sending Dad to Texas with my voice recorder. If he's blown away by his and Mom's experience at M.D Anderson, then we'll have to have a quick and intense discussion about whether Mom should remain down south. If, however, it turns out that M.D. Anderson isn't light years ahead of what we've got here locally, then we'll be content to keep Mom in Alexandria, regularly visiting Fairfax or NIH for treatment and evaluation. Of course, Mom's word is the final say, since she's the one receiving treatment.

I, in the meantime, will probably use tomorrow's quiet time to type up Dr. Fine's spiel. He really did have a lot of fascinating and useful things to say.

*Having never been to NIH before, I had no idea that security was tighter than at the local military bases. My brother Sean, who met us a little later on, pointed out that the NIH campus probably stores all manner of potentially deadly viruses for research purposes, making it crucial for all visitors to present their bona fides. At NIH, you have to get out of your car, which is then inspected. You must also submit to a check-in procedure reminiscent of airport security: bags are X-rayed, and you walk through a metal detector. Once you're back in your car, you will be stopped again before being allowed to enter the parking structure for the Main Clinic, which is where we met the neuro-oncology staffers.


special mention

On Mom's birthday, Anita Lea and Pastor Jeri visited our home to celebrate communion with Mom. As this was only communion and not an entire liturgy, the sacrament took only a few minutes. My brother David and I were out at the time, picking up the marvelous Korean take-out that would serve as Mom's birthday dinner. I mention this because, in the aftermath of Mom's party, I failed to acknowledge Anita's and Jeri's visit as one of the bright points of Mom's very full and active day. My apologies to both ladies.

Oh, and Anita: we have your jacket.


Tuesday, May 5, 2009

5AM reveille

We're off to the National Cancer Institute in DC tomorrow to meet with Dr. Harold Fine for a consult-- possibly to see whether he'll take Mom as a patient and get her involved with Avastin therapy, above and beyond regular therapy. The appointment's at 9AM; the paperwork says we have to be there 2 hours early, i.e., at 7AM, which means we need to be on the road by 6AM, which in turn means waking up around 5AM. Joy.

On Thursday Dad and Mom are, in principle, leaving for Houston. They'll arrive in Houston in the mid- to late afternoon, will stay the night at my aunt's palatial estate in Conroe (the very same big sister who was here for a couple weeks), then will make the 60-90-minute drive into downtown Houston to meet with docs for a morning appointment at the M.D. Anderson Cancer Center. I imagine that my parents will return to Alexandria very soon after-- either Friday or sometime over the weekend, depending on what sort of family discussion occurs in my absence.

Mom's May 11 appointment with Dr. Tonnesen (the Fairfax Hospital radiologist) has been moved back to May 20. I'm a bit nervous about the timing; Mom's supposed to start regular therapy soon, and we're talking about an aggressive tumor that will recur.

Questions for us to ask the experts, both tomorrow morning and in Houston on Friday:

1. What percent of the tumor was removed during the debulking, and how does this affect Mom's prognosis? What about the relevancy of the fairly high off-the-cuff Karnofsky score that Dr. Meister had given Mom?

2. Let's get into the nitty-gritty: how adverse, really, will the effects of in-tandem radiotherapy and chemotherapy be?

3. How much difference would it make, really, for Mom to remain in Houston for treatment, or for her to remain in northern Virginia? I'll be curious to hear the opinions of both NCI and M.D. Anderson on this point.

4. How should we interpret the MRI and CT images we saw on the compact disc? (This may actually be a different form of question 1, as I'm aiming to find out just how much of the mass remains in Mom's head.)

5. What do we need to know about clinical trials-- enrolling in them (specifically, Avastin therapy), etc.?

I'm sure there are other questions... perhaps I'll think of more in the morning.


a possible breakthrough

My aunt departed for Houston this morning, so I seized my opportunity. I may have convinced Mom, finally, of the necessity of going down to Houston to do the M.D. Anderson consult.

Early this afternoon, after my brother Sean had come and gone, I sat with Mom on her couch, in front of the living room TV, and showed her the "before" and "after" pictures from her pre- and post-surgical MRIs. I explained, as much as I could, what she was seeing-- the MRI's "camera angle," the different parts of her brain, skull, and other soft tissues... the cloudy edema surrounding the tumor, and the fuzzy-looking mass itself. It was the most morbid slide show I've ever conducted.

Mom, to her credit, seemed to take the grim presentation rather stoically, but when we got down to discussing her prognosis, it quickly became obvious that, up to now, she had not absorbed the true import of what all this means-- how aggressive glioblastoma multiforme actually is, and what her prognosis is both with and without treatment. Today's news obviously hit her hard, and she latched on to the notion of being dead in 3 months-- which, as I emphasized, is a strong possibility for people who receive no treatment. We discussed survival rates up to and beyond the one-year mark; I told her that we were looking into new treatments, such as Avastin therapy.

"So, even with all this, I might be dead and gone in a year?" Mom asked, incredulous.

"That's one possibility," I said. I wasn't about to sugar-coat things for her.

Mom got that resigned look she's given us in the past. "If I die, I die," she said. But at the same time, she said she understood why it was so important for her to get help. Though she wasn't entirely clear on this, I got the impression that our talk had made her more amenable to the notion of flying down to Texas on Thursday (Mom has an appointment tomorrow morning at the National Cancer Institute; we'll be discussing Avastin therapy and other matters with Dr. Harold Fine). The fact that I was crying toward the end of my spiel might have nudged her toward acceptance of the need for treatment.

But Mom's signals to me were mixed. Things might change in the next few hours as she digests the bad news; she might acquiesce totally, or she might wall herself off and stubbornly refuse to go anywhere. I held her hand for most of the time I was talking with her, squeezing it on occasion. She always squeezed back, even as she was balking at the news. I take that nonverbal cue as a good sign.

I understand Mom's fatalism, though. Personally, I'd want to get things over with as quickly as possible: why linger and put everyone through the misery of a slow decline? Why cling greedily to life when you know the prognosis can never be rosy? I know exactly what Mom is thinking; neither of us is the type to beg and plead for more life, though we're both open-minded enough to at least try some treatment options. Mom now knows that, even with treatment, her prospects are, in all likelihood, very limited. That's the nature of this vicious, poorly understood tumor: it sneak attacks you, you break it up, and it reappears in little spots here and there until therapy becomes less about preserving cognitive function than about easing the victim's decline. This is the path that Ted Kennedy is already following; statistically speaking, my mother will likely soon be his companion on this sad road.

But as I also told Mom, this doesn't mean the situation is hopeless. Thanks to Mrs. Landgrabe (my old French teacher, whom I mentioned in my previous post), I know, for example, that Dr. Fine at the National Cancer Institute has a higher-than-average number of GBM patients who survive beyond the four-year mark. Dr. Meister had told us, early on, that one of his patients has gone four years with no recurrence of GBM after the therapeutic regimen. There's still reason to hope. Life from here on in might not be cancer-free, but it's possible to live for years without a major recurrence. Now, at the very beginning of treatment, it's not unreasonable to think this way. It's not irrational to say, "We're gonna fight this."

So I've laid all the above out for Mom. I think she has a better idea of what's at stake, and I don't blame her for taking it badly. I'd need time to process all this, too, if this were my first time really understanding the situation. If anything, I'm proud of her bravery in the face of this crisis; what she faces is nothing less than the end of her world.

Upshot: I'm not a betting man, but I think Mom will be boarding that plane to Texas, with Dad at her side, this Thursday. She might not want to do it for herself, but she'll do it for us. All we want her to do is visit the clinicians at M.D. Anderson; nothing's been decided about where she'll be receiving her routine treatment.

I asked Mom whether she'd understood everything I'd told her. She gave me a dirty look: "I understand, OK?"

Mom's annoyance has never been so pleasing.


post-party reflections

Mom's birthday was one long celebration, literally from morning to night. Mom never asks for anything specific, and in years past, we've responded to the occasion non-specifically: sometimes there have been cards; sometimes there have been cakes, or dinners out, or whatever. I can't speak for my brothers, but I've long been a master procrastinator when it came to big events like birthdays. That may have been a good thing on this day.

The birthday began with few plans in particular; an idea had been floated around a day or so earlier that we should order take-out for Mom, since she seems loath to leave the house these days. But as the day evolved, things just got better and better, despite the lack of structure. Mom had several visitors throughout the day, including our family friend Mrs. Kopf, and another friend named Mrs. Steinberg. She received a ton of phone calls, got flowers and food from various sources, and also received two cakes (thanks, Mrs. Kopf and Mrs. Burns!). Each time I tried to leave the house to go on a shopping errand, something would happen to prevent me-- an email, a phone call from one of the cancer centers, or a visitor dropping by with little to no warning.

Lunch was small and informal, but delicious. Dinner-- about the only planned aspect of the day-- involved takeout from a local Korean restaurant, Han Seong Ok. Dinner also saw us eating together as a family in our new dining room-- this for the very first time. It was the five of us, plus my aunt, who has been by Mom's side this entire time. They may be Korean, but the two sisters have seemed more like Siamese twins since my aunt's arrival just after Mom's surgery.

Dessert was a sugar overload for everyone, including the dog. We dug into one of the two cakes and had two versions of chocolate mousse-- one that I made from a package, like pudding, and another that I made per Nigella Lawson's incredible egg-less recipe, which I had stumbled across while in Korea. Still to be sampled are Dad's ice cream, the other cake, and a multi-berry pie that David brought over from a trusted pie-maker.

The dog was at his most ill-behaved on Mom's birthday, much to everyone's amusement. Maqz patrols the house with an inflated sense of entitlement, but because Mrs. Kopf began sneezing around him, he was banished to the downstairs for much of the early afternoon. This must have come as quite a shock to Maqz, who is normally given far too much leeway in our home-- not by me, as I'm the "mean" one, but by my parents, especially Mom. Of course, Maqz's presence is good for Mom, but the dog is also a thief and a beggar. When we began to sit down for dinner in the dining room, Maqz would leap onto an empty chair. Each time he was shooed off by someone, he would growl that high-pitched chihuahua growl of his, jump off the chair, and immediately seek out a different empty chair. This sequence was repeated three or four times: leap on, be shooed, growl impotently, leap off. Maqz's growling is what made the whole thing hilarious: it's hard to take a puny canine nebbish seriously.

But Maqz crossed the line when he snapped at his owner, my brother Sean. Sean duly consigned the dog to the basement-- yet again-- during dinner, which then proceeded smoothly. Maqz was let back upstairs after dinner, but was re-banished when we received a surprise 10PM visit from my former French teacher, Mrs. Landgrabe, and her husband, Dr. Ed Hayes. It was great to see them again after a long time apart; they've been a part of our lives since we three boys were students at Mount Vernon High School, where Mrs. Landgrabe taught French. Madame may be properly credited with motivating me to major in French and to think more globally; she had successfully passed on her love of the Hexagon's* language and culture to me. She's going through some trying times herself these days; those of my readers who know her are asked to keep her, and her daughter, in their thoughts. In any case, Mrs. Landgrabe's and Dr. Hayes's visit was a welcome way to cap off the evening.

All in all, it was a day of canine yipping and nipping, but also a day of laughter and togetherness, with plenty of hugs to go around-- not to mention flowers and more flowers to punctuate the hours. Mom got some presents, too, but I think I've said enough already, and will let her enjoy her new things in private.

We have two photos from dinner and dessert, courtesy of David and his camera's timer function. Mom, self-conscious since this whole mess began, didn't want to be in any of the pictures, but we promised we'd Photoshop them so that she'd be presentable to the public. Once I get that editing work done, I'll slap the pics on the blog so you can have a tiny glimpse of what May 4th was like for us.

UPDATE, May 16, 2009: It's come to my attention that I neglected to specifically mention the gifts of clothing from Mrs. Rapaport. Thank you, Mrs. Rapaport.

*"L'Hexagone" is France's nickname for itself, because the country's shape is reminiscent of a hexagon. The French jokingly use the expression "[in/at/from] the four corners of the Hexagon" ([aux/des/etc.] quatre coins de l'Hexagone), which means "everywhere in France."


Monday, May 4, 2009

Happy Birthday

To the most beautiful woman in the world:

Happy Birthday.

The above photo gives you an idea of how Mom might handle a situation in which five people have to travel in a minivan with only four seats-- the rear seat having been taken out to make room for a load of personal effects.

That's the sort of mother we have.

UPDATE: Many thanks to Mom's Korean friends, Mrs. Kopf and Mrs. Steinberg, for dropping by today with gifts and assorted kindnesses. Mom was very happy to see her friends.


Sunday, May 3, 2009

seeing the mass

I finally had a look at the CD from Fairfax Hospital, the one showing images of the mass in Mom's head before the debulking surgery. Because Mom will be visiting at least one new cancer clinic this coming week (NIH on Wednesday; possibly M.D. Anderson on Friday*), we are requisitioning several copies of the pre- and post-surgical MRIs; I hope to have a look at those images, too.

Flipping through the layers of Mom's brain was a strange experience, and watching the mass appear, frame by frame, larger and then smaller, was harder than I thought it would be. Dad watched with me as I advanced through the images; according to him, the tumor itself was easier to see on a different scan than the one provided to us. What I saw looked a lot like a cloud in the frontal lobe, taller than it was wide. Most of that cloud was probably the edema-- the swelling of the brain in reaction to the pressure of the aggressive mass. The mass itself didn't appear to have definite boundaries, though it was fairly distinct to my untrained gaze.

Most of that mass is gone now, thanks to the surgery, but Mom's headache complaint worries me, and she's still iffy about dates and events. When we tried to persuade her to go to Houston earlier in the day, we attempted to explain our reasoning to her, but at each step she would demand "Why?", which would seem to indicate the persistence of frontal lobe-related cognitive impairment. I've talked before about the frontal lobe's role in connecting cause and effect; this means it has a role in our ability to follow logic, our ability to understand the "why" of things.

So there remains a question of the extent to which Mom understands her own situation. I keep hoping for this aspect of her cognition to improve; perhaps it's impatient of me to expect more progress after so little time has passed since surgery, but my urgency is fueled by the time crunch imposed on us by the tumor itself.

But seeing the tumor was educational. It gave a shape to the enemy.

*The situation, as of this writing, is that Dad made the appointment with M.D. Anderson a few days ago, though no doctor was specified as the person who will meet Mom. Flying to Houston on Thursday (the appointment is for early Friday morning) is looking bad, according to my cousin Marie, who works for Continental Airlines and is trying to help us out with passes. It may be that Dad and Mom will have to fly to Texas on a military hop. Then again, if Mom remains adamant about not going to Houston at all, we might simply start her regimen here in northern Virginia and get her to M.D. Anderson later.


progress report

Mom complained of headaches today, which is worrisome. Cognitively, she seems about the same, but we still haven't persuaded her to take the trip to Texas.



Many thanks to Mom's friend Cheong Burns and to another Korean friend from church for dropping by today. Mom enjoyed the impromptu visit.

Thanks, as well, to Pastor Jeri for having stopped by yesterday after Dale and Pat's visit. The support Mom has received is appreciated by us all.


on seizures

I knew this from my own reading and coursework, but in case you didn't know, seizures (often associated with brain tumors) aren't necessarily about falling to the ground and jerking around uncontrollably.* I remember one of my psych professors saying that, for some folks, a seizure might be as simple as standing perfectly still and staring off into space for a time. This article, by a person diagnosed with a brain tumor, offers a description of a seizure from the victim's point of view. While I didn't ask the doctors about this, it's entirely possible that what I witnessed on the morning of April 16, the day Mom's symptoms appeared in full force, might qualify as a species of seizure.

UPDATE: This entry was inspired by a bit of research that led me to this blog post on a site called Kevin MD.

*As someone who has watched a lot of "House" since coming home from Korea, I've noticed that, when patients have seizures on the show, they tend to be of the stereotypical variety. Along with seizures, other recurrent visual tropes on "House" include: vomiting blood, drilling into someone's skull, and fouling the bed.


the Big Talk

Dad wants us to have a serious talk with Mom today, Sunday, about going to Houston this coming week. She's heard from each of us individually, but we have yet to gang up on her; I'm content to have the talk on Sunday rather than on her birthday, which is Monday. An appointment for a consult has already been set at M.D. Anderson Cancer Center in Houston on the morning of May 8th. According to Sean, Mom is at least willing to consider the idea now, but we do need to drive home how important this consult will be. The trip to Houston will also be an opportunity for Dad to sound out the place, to gather his own impressions about whether Houston will indeed be a better location for Mom than somewhere closer to home, be that Fairfax Hospital, or NIH, or the Lombardi Center at Georgetown U., or the facility at Johns Hopkins. Persuading Mom to get down there this week seems to be the right thing to do. Even if Mom eventually decides to stay based in Alexandria, the consult will nevertheless prove valuable.

Keep your fingers crossed. This might not go smoothly.