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.

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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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volition

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.


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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.


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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).


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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.


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onward

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.


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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.


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on to budae

The back yard has been conquered. The weeds actually look good now, and will behave for about a week before they again look unruly.

I'll be making Mom a massive batch of budae-jjigae, a US/Korean fusion stew that combines nasty American ingredients like hot dogs, hamburger, and spam with good Korean stew ingredients like onions, mushrooms, kimchi, leafy greens, and so on. The end result tastes surprisingly good: the American meat products tend to have a gentling effect on the otherwise-spicy Korean broth. The stew itself is fairly simple to cook, but it takes a while to assemble and prep the ingredients: a lot of chopping and slicing needs to be done. It's after 4PM now, so if I want Mom to be eating sometime before 6:30PM, I need to get cracking. Poor Dad can't eat spicy food, so I'll need to make something else for him. Dad's usually fine with simple fare, such as a ham sandwich. So, who knows? Maybe that's what he'll be having for dinner.


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la tondeuse et moi

It's around 87 degrees outside (that's Fahrenheit for all my non-English-system-using readers), which is hot, but is nothing compared to tomorrow's temps. The current forecast for tomorrow is 96 degrees after a rain, i.e., it'll be hot and humid as hell.

So even though lunchtime is the worst time of day to mow the lawn, that's what I'll be doing in a few minutes, from about 1PM to 3PM. I'll be doing only the back yard today; it's gone without a trim for about two weeks, and the weeds that comprise 70% of the yard have grown big and mean during the interim.

Once I get back inside and shower up, it'll be Dad's turn to do housework: we need to start prepping for the arrival of some relatives from Texas, and as Dad pointed out, the stairs that lead down to the basement/family room look horrible. Dad and I have to do chores in a tag-team manner because one of us must always be there to watch Mom. It decreases our efficiency, but without another brother in the house to do some Mom-sitting for a few hours, we have little choice. No big deal; we'll do what needs getting done.


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the walks

We've been pretty good about getting Mom out and about the past few days. She's shown that she now has a great deal of energy, and she continues to regain her verbosity. Alas, she's still afflicted with the twitchy desire to wash and clean things, often with her bare hands, but just as often with whatever tissue or paper towel or inappropriate cloth happens to be at hand. She likes doing the dishes, but I often have to redo them: if I don't, they end up on the drying rack with soap still on them, or still covered in some sort of schmutz. Mom's focus is on the sensations produced by the act of washing dishes; she's not being driven by a specific purpose, e.g., to get all the dishes as clean as possible.

Pulling Mom away from the kitchen sink, to which she gravitates like a moth to a flame, is both frustrating and hilarious: like a child, she doesn't want to budge from that spot, but even while she resists my efforts at prying her away from her favorite activity, Mom laughs, apparently conscious of how ridiculous her own actions are. Part of her knows that, without outside intervention, she'll be stuck in front of the sink forever, doomed by her own compulsions to wash dishes until the Second Coming.

Mom also laughs at me, at my own attempts to be physically gentle even as I jokingly berate her stubbornness-- a stubbornness she can't control, thanks to all that's happening in her brain.* "Ayu, you're so silly," Mom laughs as I pull her away from the sink, holding on to her wrists to still her impulsive hands, and guiding firmly her back to her couch.

But I digress. We've gotten Mom to the park several times this week-- once to Great Falls Park and two or three times to Fort Hunt Park. Mom no longer seems quite so worried about being seen in her helmet, which is an especially good sign, given the return, in spades, of her general self-consciousness. I'd like to think that the recent increase in Mom's physical activity is helping her in some way. If nothing else, it's a break from sitting on the living room couch all day.

As Dad, Mom, and I were walking along Fort Hunt Park's perimeter road today, I joked that Mom should take up my walk for me, turning it into yet another Walk for Cancer. Mom smiled at the thought, and kept right on walking.

---

*People who doubt that the mind is what the brain does baffle me. I see evidence of the tight linkage between mind and brain every single day.


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Dad and Mom at Fort Hunt Park

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more on mortality

Pastor Jeri sent me the following email:

Glad to know you and your mother have talked about death. It's often a difficult conversation, but a most important one to have. Your mother and I have discussed her condition and death at least twice. Each time she has assured me that she is not afraid - what is there to be afraid of? After all, there is nothing, absolutely nothing that separates us from the love of God in Christ Jesus. She knows this and it brings her a sense of comfort and hope for tomorrow.

Thanks, Jeri, for talking with Mom not merely about death, but about her death. Being frank about what's happening is the best strategy; awareness is better than lack of awareness. My mother had an aunt in Korea who, when we re-visited her in 1989 (after our previous trip in 1986), was rife with cancer-- some sort of stomach cancer, I think, which had metastasized everywhere. No one in her immediate family had had the spine to tell her what was wrong with her, so she never even knew she had cancer. While awareness of a situation can bring pain and anxiety along with it, I don't think the prospect of such suffering is enough to justify withholding crucial information about someone else's fate.

In Mom's case, she benefits, bizarrely enough, from blunted affect resulting from the trauma her brain has already experienced. I give Mom credit for being brave in the face of death, but I also know that, were her brain whole, she wouldn't be nearly so stoic about the prospect of her own demise. She would, instead, be upset and depressed, at least initially. Ultimately, she'd square her shoulders and face her fate, but such acceptance would come only at the end of a rocky road, emotionally speaking.

We saw a hint of this non-acceptance a while back, when I first talked seriously with Mom about death two weeks after her first operation, and only a short time before her major MRSA infection began. "If I die, I die," she said at the time (May 5, the day after her birthday), sounding more resigned to than accepting of her fate. She had more of her mental faculties back then, and because very little time had passed since April 16, the shock of her cancer was still fresh. Now, though, Mom seems generally calmer and more serene, perhaps because of her brain damage, but also perhaps because she's had time to consider her situation.

There will be more such discussions with Mom, especially now, while she's lucid and capable of some degree of future-oriented thinking. There's still a lot to talk about, many things to settle. If we learned anything from the sudden death of my great aunt (on my father's side) in the 1990s, it's that people shouldn't wait before setting their affairs in order. Going through life in denial of the inevitable is a stupid way to live (I'm saying this as much to myself as I am to you, Dear Reader). Just as good parents work for years to help usher their children into adulthood, so we all should take pains to prepare our loved ones for our own passing. It's not morbid to talk frankly about death; death is, like it or not, the One Sure Thing about creaturely existence. Instead of being a source of fear, that thought should be a source of comfort. See the world aright, and it will be.


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...and we're off

It won't be long before we leave for our regularly scheduled 2PM radiotherapy appointment. The radiation oncology department has been running behind the past few days, perhaps as a result of the breakdown earlier in the week. Yesterday's session ended late for Mom-- after 2:30PM. This is unusual; we've spent the last few weeks pampered by how promptly Mom has been treated: normally, if we arrive early, she finishes early, sometimes even before 2PM.

We'll see how it goes today.


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yesterday's dinner

Yesterday, we chowed down on salmon steaks and shrimp. The shrimp came to us courtesy of Mom's good friends the other day; the salmon was an archeological find, discovered in the recesses of one of our freezers and brought back to life.

I had made a huge pile of five-cheese macaroni the other day, so that was one of our side dishes. A large salad completed the ensemble.

The salmon and shrimp got about the same treatment: a sauté in butter and olive oil, plus a sprinkling of salt, pepper, and garlic. The shrimp also got an extra sprinkling of Old Bay, with a "spicy" seafood dipping sauce (it wasn't that spicy to me, but Dad claimed it was mighty spicy) on the side. The macaroni, which already had chunks and flakes of crispy bacon on it, received no extra adornments.

Mom saw the mound of food on her plate and said, "Wow!" when I placed it in front of her. True-- she says "Wow" a lot, almost reflexively, when she receives her meals from me; in this case, however, she was gawking at the sheer size of what had landed on her TV tray. But as Yoda said, "Size matters not": Mom demolished her meal as thoroughly as she would have demolished a smaller-sized dish. The salad came out separately, and it met the same fate.

Dad also seemed to find the meal special. Sitting at our new bar, he remarked, "I feel like I'm eating at a restaurant somewhere." I was happy to receive the compliment, but I knew the truth: salmon isn't that hard to cook, the mac-and-cheese were merely reheated from the other day, and the little shrimplings needed barely any help at all, as they'd been pre-cooked. It was less a matter of cooking than of putting prepped meal components together.

Tasted good, though.


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delivery

We just got home, and barely a minute after we'd gotten inside, there was a knock on the front door. A gentleman stood outside with an enormous fruit basket, and when Dad read the note, we discovered that the basket was from Linda Stewart of NALC, Mom's previous place of employment (Mom retired last year).

Thanks, Linda!


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waiting for Mom and Dad in the hospital parking deck

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Mom and I talk about death

Yesterday morning, after I had fixed Mom up with her new leg dressing and her clothes, we lay on the bed in her bedroom and talked. We were waiting for Dad to be finished with the medical guy who had come over to give him a physical exam for insurance purposes. As I mentioned yesterday, my conversation with Mom was fairly directed: I asked questions and Mom provided answers; she volunteered little by herself.

One part of the exchange went something like this:

KEVIN: Mom, do you know what the problem in your head is?

MOM: Do you know? [Mom sometimes echoes a question instead of answering it.]

KEVIN: No, do you know? Do you know what the doctors took out of your head?

MOM: Some kind of cancer problem.

KEVIN: That's right. (long pause, then in Korean) Are you afraid? Are you afraid of dying?

MOM: No, I'm not afraid at all.

KEVIN (back to English): Good. When I die, I don't want to be buried.

MOM: Really?

KEVIN: No; I want to be cremated.

MOM (nodding): Oh.

KEVIN: I want my ashes scattered somewhere. Maybe the ocean, or in the Han River-- OK, maybe not the Han River. It's pretty dirty. But maybe a pretty Korean beach. How about you?

MOM: Yeah, I want something like that. Some pretty place.

KEVIN: You don't want to be buried?

MOM: No.



I had wanted to ask Mom outright whether she realized what chances she had of dying from this disease.* I didn't think of that question in time, but it's an important one; it would have provided me some idea of whether death held any immediacy for her.

What I did learn during our brief exchange was something I already knew: Mom isn't afraid of death, and she wants to be cremated. I had already intuited the first conviction based on Mom's attitude toward life, and my parents and I had discussed the second matter long ago, before this current mess began.

I'm glad that, at least in the abstract, Mom has her bags packed, so to speak. Having this reaffirmed yesterday was comforting, albeit in a strange way, and also made me unspeakably proud of my mother. The relentless forward march of time forces us all to face toward the Great Door, no matter how we try to avert our eyes. The door sits always at the horizon of our vision and cannot be blinked away. A life lived in conscious affirmation of our eventual destiny is, I think, a richer and fuller one than a life lived heedlessly in an attempt to deny the inevitable. I hope Mom's quiet lack of fear about her own mortality can be an example to others who dread the prospect of their own demise. To live mindfully in the moment is to see everything around you, and that includes the Great Door. Step through or be dragged through.

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*The chances of dying from glioblastoma multiforme, or from infectious problems related to the treatment of GBM, are nearly 100% by the time we reach the "five years post-diagnosis" mark. The only ways not to die from the tumor would be to live long enough to die of old age, to succumb to something totally unrelated to either GBM or infection, or to perish in an accident or some other unfortunate circumstance.


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thank you, ladies

To Mrs. Kopf and the friends gathered at her apartment today:

We're sorry that Mom decided she didn't want to go out again to see you all (she didn't seem up to another long drive after her radiotherapy, and also seemed somewhat tired in general), but we deeply appreciate all the food you prepared for our family, much of which was eaten this evening. The steaks, green beans, bread, and peach cake were all delicious, and the remaining food (there's a lot left over!) will feed us for several meals, I'm sure.

Thanks again!


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Mom's quirks

With the return of lucidity comes the return of ego. Mom still feels impelled to wipe down the kitchen sink (and adjacent counters) with her hands or with a wet paper towel, but when we try to pry her away from this activity, she now resists. Getting her to shift focus from A to B is becoming more difficult.

Earlier today, back when I was helping Mom in the bathroom, she stopped for a few moments and stared at herself in the mirror. Finally, she shook her head and muttered, "Terrible."

"What's terrible?" I asked, already knowing the answer.

"This," Mom said, staring at the palm-sized crater where part of her skull used to be. "And here," she said, pointing at the skin that was grafted onto her scalp, barely visible to her in the mirror. No hair will grow from that area: the skin is from the back of her left thigh.

Mom's resistance to our attempts to pull her away from an activity and her self-consciousness about how she looks are further signs of the return of Mom's ego, i.e., her sense of self. This is generally a good thing, though I wish the reappearance of ego entailed the disappearance of Mom's compulsive behavior.


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almost loqacious

Mom's been quite lucid and talkative this morning. She and I had a conversation that, while largely guided by me, was characterized by the rationality of Mom's responses, which evinced not only improved memory, but also a somewhat-improved ability to connect cause and effect.

Dad was occupied with a medical professional from one of his insurance companies (he's altering part of his policy, which necessitates a checkup when you're over 65), so it was left to me to perform some of Dad's normal morning routines with Mom, such as helping her dry off after her shower and dress up, then re-applying the complicated set of bandages that generously cover her left thigh, protecting her skin harvest site from over-abrasion. Mom and I had plenty of time to chat; one topic of that chat will be the subject of a subsequent blog post.

Right now, though, we have to prep to get out of here: Mom's 2PM radiotherapy appointment awaits.


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advice about clinical trials

I received another pearl of wisdom from Dr. Bill Keezer that deserves to be shared more widely, so I'm reproducing his email here, with minor edits.

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Kevin,

I understand your concerns over therapies for cancer, and Dr. Bajaj sounds less warm or sympathetic than one would like in a doctor. From my own perspective, and I have put some thought and reading into cancer mechanisms over the years, the idea of individual therapies based on genetics is pseudo-science. I fully agree that many cancers have different etiologies, but I suspect that the underlying mechanisms and locations of genetic damage are fewer than the number of distinct cancers. Also, once the damage is done, it may not be reversible, but rather one is still in the problem of dealing with the results, not the lesion(s) themselves.

Some reading I did several years ago indicated that there are multiple pre-disposing factors to cancer and multiple steps to get there. There is also the matter of when and where the factors get expressed. Childhood tumors are far more aggressive than adult tumors, which seems to go along with the fact that children are growing and developing--it potentiates the cancer growth and development. The same underlying mechanism in one tissue with its own internal growth and metabolism controls will have different expression than in another tissue.

The same factors in different tissues seem to cause different progressions. The vulnerable links in the cancer will come at different points in its overall metabolism. In fact, rather than deal with the genetics, which sounds so wonderful (and may simply be the result of trying to justify genetic research), it might be more profitable to study the differences among cancers from different tissues and different types of cancer from the same tissue. There has to have been some of this going on, for there to be as many different chemotherapies as there are, and for drugs to have been developed that have fewer side effects.

At one time, chemotherapy was very crude. One administered a cytotoxin, and because the tumor was growing faster than normal cells, it would preferentially be killed. However, the drugs were so toxic that the patient also got sick from normal cell damage. Today, my mother-in-law is taking a chemotherapeutic, and she never did have major side effects except the loss of hair. The drugs are becoming more specific. That is why Avastin is for breast cancer and Temodar is for GBM.

One of the things that I still remember from pathology, is that tumors have stages, and these are not just clinical stages, they are cytological stages. As the tumor becomes more aggressive, it becomes more de-differentiated. Although, that is not the best term; rather, it becomes less distinct as a tissue and more amorphous. The cells lose their particular histological character, and become more and more a blob with a nucleus. It is rather like the control mechanisms are damaged or destroyed. Some of those are genetic in the sense of specific loci on the chromosome, but some may be more general, such as the alteration of the portion of the chromosome called the telomere, which seems to be tied into cellular longevity, and is altered irreversibly in immortal cell lines. If such is the case with cancers, then a genetic treatment is not in the cards.

You should have all the questions in the world for your mom's regular oncologist. You and your dad continue to act as ideally as I can imagine in handling everything on your plates. As for the article on clinical trials, there is a lot of peripheral stuff around them, and a lot of it is forced by a combination of government regulation, scientific validity, and fear of torts. I don't necessarily agree with the undertone that many cures or better results are being lost due to lack of trials. There are probably more lives lost due to excessive requirements of efficacy and safety by the FDA. Plus, whether we like to admit it or not, once a drug is generally sold, the entire population becomes a large-scale clinical trial, albeit uncontrolled and unmonitored in detail. In the case of cancer patients, to be able to take a new drug, perhaps less tested than treatments for chronic disease, could literally be a life-saver or extender. With the death and illness risk of cancer, there can rationally be a higher risk factor in taking drugs, with the proviso that the patient is aware of the more limited testing.

The one doctor trying the reverse of the standard protocol is definitely of interest to me. The rationale sounds good, and the results may come faster. In some cases, a full-fledged clinical trial may not be justified, but even anecdotal evidence can foster further interest and study. Though the results would not be applicable directly without further clinical trials, tissue culture studies would be a great way to do research, and I suspect this is where the drug companies are finding new drugs. It would be analogous to the search for new antibiotics, first screening on bacterial cultures, then tests in animals, finally tests in humans.

It has been very heart-warming to read that your mom is showing mental improvement and a return of physical strength. There is also the underlying pathos of knowing it is limited in time. And so you build up strength during the good times for when they will no longer be, and retain the good memories for when that is all you will have.

On a different note, I have returned to reading Water, and find you and I think very much alike in the main structures, but with different details. As I said earlier, I will write notes that we can discuss when you have the time and energy for it.

In the meantime, my thoughts and prayers are with all of you.

Peace,

Bill

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Thanks, Bill, for this very informative email, which will be useful to more than just our own family.

I should note that, although Dr. Bajaj was direct in his answers, he was polite but not cold. Besides, if it's a choice between warm and overly optimistic versus cold and truthful, I'll pick the latter any day. Style and tone aren't as important as substance-- a value I know you share. Fortunately, Dr. Bajaj didn't force me to make such a choice. He was a pro, and I appreciated his candor.

It is indeed painful to know that, no matter what improvements Mom experiences, they'll eventually fade away. It doesn't seem fair, does it? I'm reminded of the poor patients in the movie "Awakenings," or of Charly in the short story "Flowers for Algernon." Both are stories about people in dire conditions who experience temporary improvement, then inexorably slide back into oblivion.*

Of course, "eventually fading away" is what we're all destined do. Buddhists are fond of remarking, "Look around you at the people in this room. In a hundred years, none of them will be alive, including you." Impermanence is a trivial yet powerful fact of physical existence, and making sense of death is one of the most important human tasks-- a task that some of us spend our lives running away from. For me, I have no trouble facing the prospect of my own eventual decease, but knowing that this will happen to those I love-- very likely in ways that will seem cruel or miserable-- is a phantom with which I wrestle constantly, especially these days as I witness my mother's decline.

Thank you again for your many insights, and for the care that prompted you to offer them.

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*"Awakenings" is a fictional story, but is based on the life and accomplishments of Dr. Oliver Sacks, whose The Man Who Mistook His Wife for a Hat is one of my favorite works of medical nonfiction.


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kamsahamnida

Our thanks go out to Cheong Burns for dropping off her wonderful (and enormous) lasagna. While I normally feed Mom Korean food whenever Dad and I eat Western food, I fed Mom the lasagna, and she ate her entire portion with gusto.


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on tumor growth and radiotherapy

Mom's radiotherapy finished early today; she was done before I had even finished my previous blog post. Dr. Tonnesen is on vacation this week, so we met with a different radiation oncologist named Dr. Bajaj (pronounce the "j"s like the "j" in "jump"; the name is Indian, not Spanish). Normally, our consults with Dr. Tonnesen have been on Thursdays, but Dr. Bajaj holds his own consults on Tuesdays, which is why we saw him today before wheeling Mom down the hall to get some blood work done.

We asked Dr. Bajaj a few questions that have been nagging at us. One question, which has bothered me for a long time, is why the treatment for GBM is standardized if, as Dr. Fine at NCI noted, each GBM is actually unique at the genetic level. Wouldn't it be better to develop treatments tailored to the individual? Dr. Bajaj politely but bluntly noted that no such treatments have been developed (an answer that seems to sidestep the question), but he also said that the standard treatment today reflects the most current research on the subject. "What was novel three years ago is standard today," he said. His point, I think, was that it's those innovative treatments that help hone the way doctors deal with GBM in particular, as opposed to gliomas in general. As for the genetic uniqueness of the tumor, Dr Bajaj said, "At the end of the day, it's still a tumor," i.e., all tumors, no matter what their specific genetic structure is, will respond the same way to radiotherapy and chemotherapy administered at the appropriate dosages.

Science involves constant self-correction, especially in areas where rapid progress isn't easy. Fighting glioblastoma is one of those areas: scientists have been researching the cancer for decades, and still have found no hint of a cure. The introduction of Temodar as a supplement to radiation was considered a major breakthrough a couple years back because it extended the median life expectancy of GBM patients from a few months to a little over a year (we've been over those stats before, so I won't repeat them here). Tests are done on patients in clinical trials; the results of those tests yield statistics that allow doctors to have an ever more accurate picture of which treatment works, in what way, and for how long. The treatment Mom is receiving now is the current standard therapy for GBM-- i.e., it's the same protocol in all legitimate cancer treatment facilities.

We also asked Dr. Bajaj about the neoplasm (new abnormal tissue, i.e., the new tumor growth) in Mom's brain. We had learned a while back about the spread of the tumor from her left hemisphere across the corpus callosum to the right hemisphere, and we were unsure whether Mom's current radiotherapy was adequately covering the neoplastic tissue. Did the beams have to be recalibrated and re-aimed so as to target the new growth, or was this adjustment being made automatically as the docs scanned Mom's head during each treatment? I told the doc that I was unclear on how, exactly, the process worked-- were the beams narrow, almost like the coherent light of lasers, or were they more along the lines of a flashlight beam, easily spreading outward according to a "butter gun" spread pattern?

The doctor told us that the radiation covered 4-5cm more than the target tumor area, which was a way to catch more than just the principal cancerous masses. He showed us a printout of the beam coverage in Mom's case, and affirmed that the radiation beams were more like flashlight beams than lasers. In other words, the points of intersection between the beams were all rather large, irradiating a significant volume of the brain at each spot where the beams crossed. We saw for ourselves that a large portion of Mom's brain was thus covered.

This was, at least initially, reassuring. Dad and I had begun to worry that the new cancerous growths were somehow being missed, that the doctors weren't making adjustments to account for the tumor's progress. Instead, we've seen that radiation treatment tends to anticipate the tumor's progress by covering more than the main cancerous masses. Still, it was vexing to realize how much the tumor had progressed during the time that Mom was off therapy and on daptomycin-- a period of about eight weeks. Doctor after doctor had reassured us that we needn't worry about rapid tumor growth yet. As much as 6 months could go by before the question became significant, or so we were told.

But we've learned not to trust the doctors' reassurances when it comes to Mom's health. Better to assume that some form of Murphy's Law is always in operation: entire armies of microorganisms looking for any excuse to invade Mom's immune system, and/or a tumor that seems to be worsening faster than the standard predictive models can account for. In this case, Murphy's Law says that, if the docs claim that Mom's tumor won't show significant progress for six months, then it'll actually show progress in two. Dad and I have made arrangements to talk with Dr. Tonnesen about this early next week, when the doc is back from vacation.

In fact, we plan to hammer him with questions about this issue. What we still haven't established is whether the tumor's progress, as reported on the latest MRI paperwork, reflects rapid neoplastic growth or is merely a slow and steady continuation of what we had been informed of many weeks ago, back when Dr. Benson had first spoken to me during Mom's second hospital stay. A corollary question is whether the radiation has had much effect on the neoplasm since the resumption of Mom's treatment, or if it seems that the cancer is a juggernaut racing through Mom's brain. I hate to say it, but this is a practical question, because it affects how we make arrangements for Mom's future, and for our future without her.

So we came away from our two doctors' appointments with mixed feelings. We're reassured that Mom's skin is healing well, and it's nice to know that surgery and in-tandem therapy have done something to stave off the progress of part of Mom's cancer. We're also reassured that the docs are doing what they can to cover every part of Mom's brain that has been affected by the cancer. But we're still worried about where and how the tumor is spreading, and we'd like a clearer notion of the big picture: how rapidly is the spread happening, and how effective, overall, has the resumption of treatment been?

Mom got up a little after 7AM today. I'm guessing she didn't sleep that well, perhaps because of her aches and pains from yesterday's walk. She's been fast asleep almost since she got home from therapy. The contingent from church has been called off to allow her to rest. They can come by another day.



UPDATE, 4:59PM: A family friend emailed me a link to a NY Times article about clinical trials for cancer. It's a must-read for people who are interested in this subject. Significantly, the article briefly mentions my own concern when it says:

In most studies researchers have not accounted for genetic differences in tumors.

As cancer-fighting technology continues to advance, I can only hope that more individualized therapies will become available. Cancer is essentially a genetic beast; the battleground therefore lies at the genetic level.


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at the hospital early

We had so much time after the appointment with Dr. Mirali that we drove up 495 to the Virginia side of Great Falls Park. It's $5 for a 3-day pass, but Dad whipped out his senior membership card-- good at all national parks-- and got us in for free.

So we parked the car, parked Mom in her wheelchair, and entered the park. We ate a small but expensive lunch at the park ($3.25 for a hot dog will give you an idea of what "expensive" means), then headed out to see the falls.

Two of the three overlooks are wheelchair-accessible; we took Mom to what was billed as the best view: Overlook 3. It was indeed a gorgeous sight, and we stood there a while, baking in the sun but fascinated by the angry movement of so much water.

It wasn't long before it was time to go. We drove back down to the hospital and arrived around 1:20, very early for Mom's 2PM radiotherapy.

And that's where matters stand at the moment. Dr. Mirali was generally satisfied with the way Mom's skin has been healing, especially her scalp. He did mention that Mom's leg wasn't healing as fast as he would like, but that she would be fine. He also told us that, when the time came for bone emplacement surgery, Dr. Leiphart would be able to use the same initial incision as before.

The appointment ended with Dr. Mirali telling us that we needed to visit him again only if we had any problems. That sounded like good news to me. I'll take whatever good news I can get.


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appointments

We've just arrived at the office of Dr. Mirali, Mom's plastic surgeon, for an 11AM appointment. At 2PM, Mom's got radiotherapy just down the street at the hospital, and later today, I understand that we'll be visited by a contingent from church who will serve us communion.

Mom's a bit achy today because of yesterday's activity, so we won't be marching her long distances.

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Mom's walk

Mom's performance was wonderful today. She didn't have to go to radiotherapy, so Dad and I took her out to the nearby Fort Hunt Park to let her have some fresh air.

The park was fairly empty at 1:30PM on a weekday; we drove a little more than halfway around the circle drive and found a shady spot at which to park, then we got out with Mom and strolled nowhere in particular, doing our best to stay in the shade. It was a bright, sunny afternoon, but not nearly as humid as it had been over the past few days. Our stroll took us over grass, weeds, dirt, and gravel. What a sight we must have been: two large guys flanking a tiny woman in a crash helmet.

Mom's stride was vigorous and strong today. She held Dad's and my hand as we wandered across the grass and looked at various trees. We moseyed over to a nearby pavilion and sat down for a while, watching squirrels and listening to a variety of birds. Mom wasn't talkative during all this, but she was definitely verbal, making random remarks about this or that sight or sound. Dad pointed out some chalk drawings done by some kids-- probably as part of a party-- on the concrete floor of the pavilion.

We wandered even more, ending up at a different picnic table shaded only by trees. Mom tried to clean the tabletop with her fingertips, obliging me to go to a restroom and grab some paper towels so that Mom could wash her hands. The last thing Mom needed was dirty fingers; the threat of infection is always with us. Allowing her to sit facing toward the picnic table probably wasn't a good idea, but once we reseated her facing away from the table, she was immediately less fidgety and more in tune with the panorama around her.

I often like to talk about Mom's "cone of awareness," an imaginary volume of space that radiates out from her face like the beam of a flashlight. If something enters that narrow cone, she'll pick up on it. If, however, something happens outside of that cone-- even just outside of it-- she'll often miss it completely. I can, for example, stand just off to the side of Mom while she's watching TV and ask her a question, only for her to ignore it. But if I wave at her, with my hand passing just inside that cone, she'll jump as if startled and then look straight at me, giving me her full attention. At that point, it's possible to ask her anything. This is why Mom interacted the way she did with the picnic table: it consumed her attention because it filled her cone of awareness.

It was only during the final walk back to the van that Mom showed signs of fatigue, but I felt this was a good thing: it showed that she had pushed herself a bit. Never once did Mom complain; in fact, she seemed to have thoroughly enjoyed her outing today. It's nice to know the park is so close at hand.

To cap it all off, when we got Mom home, she managed to mount the five steps of our deck without needing a boost. She held the banister with one hand and gripped my hand with her other hand, but at no point did I or Dad have to boost her by pushing or pulling. This is an amazing contrast to how she was even a mere few days ago.

Thus ended Mom's brief time at the park. We'll be out that way again soon. For now, we're all happy at the improvement we see, and we hope it lasts a while.


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denied!

No radiotherapy appointment today. We just got the call as we were heading out the door: the machines are being repaired today. I was told before that this happens periodically at hospitals: the machines are delicate and are in constant use, so breakdowns happen. This is, for our family, the first time we've experienced such a breakdown. It shifts our treatment calendar by a day, but won't affect Mom's Temodar intake: Temodar is a pill, so she can simply ingest her regular dosage this evening.

On the Temodar front: Mom's been on the chemo for several days now, and has shown no signs of nausea or abnormal weakness. I recall one health care professional telling us that, nowadays, most patients suffer no side effects from the pill. I have misgivings about this, though: most people aren't highly susceptible to severe MRSA infection, either, but Mom ended up being among that unlucky 4% who are vulnerable. Unwarranted optimism, in Mom's case, is a bad idea.

Anyway, we're taking Mom out to the park again, hoping to give her another chance to walk around a bit. Our own form of therapy.


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the week begins

We're off at 1PM for Mom's regular 2PM radiotherapy appointment. Mom's about ready to finishing "primping" (she doesn't really primp these days, but Dad helps her wash and dress), which means I need to get lunch laid out for her. Mrs. Farwell came by again today and dropped off more food for Mom. Her own mother died of cancer not long ago, at the age of 85, I think, so she sympathizes with us and has some idea what Mom is going through.

Right-- off I go. The kitchen is calling.


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strength

Decadron seems to have helped Mom regain a bit of focus and vigor. This was most evident in her actions today: she bounded off the couch without help-- not just once, but three times. Normally, Mom needs a lot of help just to stand; this may have to do with a loss of both strength and balance. With the current reduction in brain swelling, she seems to be regaining some motor function. Along with sitting with two sets of guests today, Mom took a walk around the back yard and helped Dad pick some flowers. In all, it was a very good day for Mom.


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yesterday's Mom

Here's a picture of Mom yesterday, around 4PM, just before we went for our little jaunt around the neighborhood. As you see, she's waving at her many fans.

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the Smiths!

Many thanks to Brad, Amy, and little Harry Smith for stopping by, talking with us, and dropping off enough food for at least two dinners. I'll be emailing those surgically altered photos of Brad and Harry later this evening.


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another drop-off

Our thanks to Mrs. Farwell for coming by to drop off Korean food for Mom, but.... please stop trying to open our front door! Heh. It's cute when ajummas do this, but also a little creepy.


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guests and deliveries

We've got Mr. and Mrs. Quigg coming at 2PM today, and Brad Smith will be showing up later in the day to drop off food. Thanks, Brad!


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