Saturday, August 15, 2009

...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.


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.



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.


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...?


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.


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.


Friday, August 14, 2009

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.


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.



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.



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.


Thursday, August 13, 2009

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.


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.


Wednesday, August 12, 2009


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.


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.



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


Tuesday, August 11, 2009


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.



It's becoming harder and harder to pull Mom away from a task on which she fixates. For her, the kitchen seems to be the primary source for her compulsions: her need to grab anything cloth-like (including a plastic bag) to wipe the sink and countertop is strongest when she's in that part of the house. No other room seems to have such a pull on Mom, not even her beloved living room, where she spends so much time sitting and/or watching TV.

Mom is currently flipping through the doodling book I bought her; she doesn't seem too fascinated by the Rubik puzzles (Rubik's Cube and Rubik's Magic), perhaps because they require a level of logic that she can no longer summon. I suspect that Mom might be better off with something like a snake puzzle, or some other such toy that doesn't necessarily require one to solve it. I also suspect that, given Mom's love of "find the differences in the two pictures" exercises, that she might enjoy activities that are of a more pattern-finding nature, such as word finds or "Where's Waldo?"

One thing I did notice today was that Mom, if left to her own devices (but still supervised from a distance), would eventually desist in her compulsive cleaning activities. Dad's been using the term for some time, but this finally looks like the behavior associated with obsessive-compulsive disorder: the rituals in which OCD sufferers engage tend to be of a world-maintaining nature-- something that we religious studies students pick up on right away. Think about the guy who has to wash his hands a specific number of times, or the woman who cannot enter her house until she's turned her key in the lock a certain number of times and in a certain way. In both cases, these are people who, if their ritual is interrupted, will spend the next while believing that something is cosmically wrong. Once the ritual has been properly performed, however, the unease disappears: adharma, chaos, has been defeated and dharma, order, has been restored.

All this is new for Mom, but it seems to be the next logical step in her disease's progression. Before, it was possible to pry her away from a task without having to deal with her resistance. She would switch quite willingly from one task to another, requiring only our guidance. Now, however, if I try to cajole her or even to gently force her away from an activity, she becomes unhappy with me, saying, "Just a minute, Kevin! Kevin!" by way of resistance. Physically forcing Mom to do anything is not a job I relish, but I find myself doing it more often, especially when Mom's actions result in dirty fingers (she loves to clean the sink with her fingers) or possible injury (we had a close call with the sink's garbage disposal unit). Treating Mom as if she were a wayward child is no picnic; it's yet another reminder that the hale and whole Mom we knew is gone for good, and has been since at least April 16, if not before.

At the same time, seeing Mom regain some measure of her own will is heartening. It's too bad that her will articulates itself in this splintered, fractured way, but what can be done about that? The architecture of Mom's brain has been sundered; impulses that might have articulated themselves normally, in happier times, now have little choice but to manifest themselves in weird and occasionally self-destructive ways. As with the other changes we've experienced, Mom's OCD-like behavior now becomes something new that we have to incorporate into our ever-evolving caregiving paradigm. She's regained a measure of will, but brain damage has prevented the return of common sense and wisdom, both of which are informed by reason. Without reason, we have nothing: sense perceptions are useless without higher functions to find or impose order on them. Life without reason is as directionless as a finger painting by a one-year-old.


no more PO box

Just a housekeeping note: my post office box has been gone since late May. I only ever received one or two bits of correspondence there, so it seemed better just to let it die off. This message won't matter to most of you, but to the one or two of you who might be thinking of mailing me something, please email me first for a proper mailing address.


Monday, August 10, 2009

the latter half of the day
(plus remarks on some conversations)

I didn't go with Mom and Dad to Mrs. Harding's house, but I understand that the parents spent a pleasant evening there. My thanks go out to Mrs. Harding and her husband Ron for their hospitality: they not only hosted my parents, but also sent back a bunch of leftovers. The chicken, shrimp, and fried kale were all quite delicious.

My own evening was spent doing two things. One was ordering some new pants from the online REI store-- didn't have to pay anything for them, thanks to the credit reserve I had built up from my massive purchases last year (REI gives you back 10% of your purchase as credit to defray the cost of future purchases).

The other thing I did was go out to the local Toys R Us. I spent well over an hour wandering the store, looking for items that might appeal to Mom. Eventually, I settled on two Rubik's items: the Rubik's cube, and a flat Rubik's puzzle that folds in crazy directions. The second puzzle has patterns on its surface; different folding sequences produce different images, and the challenge is to see whether one can reproduce certain set images. I also got Mom a doodling book-- one of those "finish the picture" exercises wherein the doodler can use her imagination to fill in major content and details (e.g., "What would you put in this picnic basket?"). Mom's been doodling a lot lately, so this seemed like the logical thing to purchase. Alas, I didn't find a snake puzzle, and will need to hit the bookstore if I want to purchase a "word find" book for Mom.

I also took a bit of a risk and bought Mom some Play-Doh. Actually, I purchased two small cans; this way, Mom and I can work separately yet together, perhaps inspiring each other to create something the world has never seen before-- mutant ddeokbokgi or some such.

Earlier in the day, Mom saw Dr. Benson, the neurologist. He was pleased with her improvement, overall. I asked him about how to deal with Mom's perseveration-- specifically, her tendency to fixate on cleaning things. I told him what I have been doing, i.e., prying her away from her activities by taking her hands or wrists and gently tugging her until she snaps out of it and moves with me to some other place. Dr. Benson thought this sort of treatment was fine, as long as we don't force sudden transitions on Mom, especially now that she's showing more volition.

Mom and Dad got back home from their time with Mrs. Harding before I got home from the toy store. They're both watching a subtitled Korean drama-- a repeat of an "ER"-style doctor drama that apparently came out last year. The story is often inadvertently hilarious, not because of the implausibilities (American medical dramas have their share of ridiculous moments), but because of the accidental commentary that the drama offers about Korean medical professionals. Suffice it to say that, if Korean hospitals are run as poorly as the one portrayed in this drama (which has the English title "New Heart"-- and yeah, I thought of Bob Newhart, too), there's no way I'll be stepping into one if something goes wrong.*

Speaking of medical professionals-- I mentioned in my previous post that my conversation with Dr. Tonnesen was both enlightening and frustrating. The problem I had was with Dr. Tonnesen's response to a question about Mom's tumor growth as shown on the MRI. The doctor observed that, in general, no one bothers with such scans during the main treatment period. The MRI scan that was performed not long ago at Fairfax MRI Center was, according to Dr. Tonnesen, one that wouldn't normally be done. When I mentioned to the doctor that the MRI report noted both the tumor's progress and the presence of necrotic tissue, Dr. Tonnesen said I was reading the report and drawing conclusions from it. This incensed me: I had wanted to ask him about what was going on, not imply that I knew better than the doctors, or that I was qualified to interpret the data. I sensed a bit of defensiveness on his part, and to be honest, I thought his response was out of line. He's a good, well-intended fellow, but I think we, the family, deserve better than condescension.

Anyway, the upshot of the conversation was that, during the eight weeks that Mom was being treated for infection, nothing more could have been done for her: the docs were, at the time, worried about whether she would even live through that phase of her illness. As he had said in a previous consultation, Dr. Tonnesen felt it was more important to look at how Mom is doing clinically, externally, than to focus on what might be happening inside her head. He called this a "pragmatic" point of view-- many patients with various types of brain damage can attain, each through his or her own individual means, a measure of functionality. In other words, internal damage isn't always a predictor of what one actually sees in terms of behavior, memory, etc. Functions (such as speech) have centers in the brain, but are also distributed throughout the brain like a network; the brain can often circumvent damage by finding other plausible neural pathways. It's therefore more useful to focus on what one can actually see.

I thought the doctor had made a valid point, but I countered that there is another form of pragmatism, this time from the caregiver's point of view: knowing what's going on in Mom's head can help us anticipate her future needs. If we know, for example, that Mom's speech centers will soon be affected by the tumor, then we can begin to prepare for this eventuality. Far better to manage affairs this way than to ignore or dismiss MRI scans, only to have a problem suddenly appear-- one we could have anticipated. Dr. Tonnesen said that it would be better to address such questions to Dr. Leiphart, and in truth, it was Leiphart who originally gave us a long spiel about the properties of the frontal lobe.

Dr. Tonnesen also promised to look over the recent MRI report (he's had it since at least July 21!), and to talk more with us on Thursday, which is our normal day to see him. Meanwhile, I've asked Dad to call MD Anderson to see whether their own treatment protocol includes not scanning patients during the initial six-week in-tandem therapy period.

*For the American equivalent, imagine being treated at the hospital in "Scrubs." The difference is that "Scrubs" is supposed to be a comedy. I think everyone's dream hospital would be the one portrayed in "ER," in which infighting is put aside so that everyone can work for the benefit of the patient (my commentary on "ER" here and here).


2 out of 4 appointments done

Mom's done with radiotherapy, and we also spoke with Dr. Tonnesen. The conversation with the doc was both enlightening and frustrating; I'll go into detail in a later post.

Now, Mom's got a 3:30PM appointment with her neurologist, Dr. Benson, and later in the day, she's supposed to visit one of her good friends, Mrs. Harding.

More later.



Mom apparently had a great time out at Lusby, Maryland yesterday, despite the heat and humidity. We're prepping for another week of radiotherapy, and then Mom has an appointment with her neurologist, Dr. Benson. I imagine he'll be happy to see how functional she is compared to when he last saw her.

We're also preparing questions for Dr. Tonnesen regarding the spread of Mom's tumor. Of critical importance is the vexing problem of why the doctors kept telling us not to worry about Mom's having missed treatment for several weeks, when the fact is that the latest MRI results show a noticeable spread during the time she missed treatment. You'll recall that this was a major worry for me: Mom was on her daptomycin regimen, and I kept wondering aloud whether we were missing the window of opportunity to treat Mom. I know that, in the grand scheme of things, no treatment is going to help her, but granting Mom as much life as possible, at as high a quality as possible, should be the goal for all of us.

Later today, after the neurologist's appointment, Mom is supposed to visit a friend for dinner. Whether she'll be in any shape to do that is up to her; we already cancelled another such visit about a week ago. Mom is prone to sudden bouts of fatigue thanks to the radiotherapy she's been receiving, so it's possible that today will end up the same way-- with a cancellation. We'll see.

UPDATE, 12:36PM: We're also going to try to see Dr. Tonnesen for a few minutes today. I had mentioned him above, but didn't know, at the time, that a meeting with him was possible today. Thursday is our normal day to see him, but our questions are urgent enough that we wanted to see him earlier. If we do see him today, I'll let you know what he says.


Sunday, August 9, 2009

much of the day alone

Dad will be driving Mom out to her friend's beach house at Cove Point in Lusby, Maryland today. They'll be leaving around 10:30 or 11AM, and won't be back until late afternoon or evening. I'll be mowing the front yard in a few minutes, then retreating into the house to avoid today's 96-degree (whoops-- 97-degree!) heat.