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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leading Mom to her bed

I sat with Mom for a while this evening, watching some Korean programs with her. Mom no longer truly understands what she's seeing, but she responds to the emotional tenor of the images flashing across the screen. If something startling occurs, Mom jumps. If a cute kid appears on screen, Mom might go, "Aww." Sometimes, it seems that she does pick up certain recurrent aspects of a storyline. For example, if I were to ask her why a certain man and woman in a soap opera are having an argument, Mom might say, "He's cheating on her." She would know this because the subject of cheating probably came up repeatedly whenever the couple argued. So occasionally, it seems that Mom understands, on some level, what she's watching.

But for the most part, Mom wouldn't be able to tell anyone what a story was about-- not in any detail. She barely speaks in full sentences as it is. Were I to ask her to relate something that just happened on TV, she wouldn't be able to, not merely because of her problem speaking, but because she often can't remember. I saw this earlier this evening. Dad asked Mom where I had driven her, and she told us both that she couldn't recall her outing with me. That didn't faze me; I had half-expected her to make such a reply. Even during our outing, she couldn't remember that David and Sean had attended Woodley Hills Elementary School.

But tonight, when Mom had finished watching her usual shows, I turned off the TV and asked her, "So! Are you ready to go?"

Mom nodded, then looked at me and asked in a child's voice, "Where are we going?"

I almost cried then. I managed to stand in front of Mom, take her hands, and count out our usual, "One... two... three!"-- that's what we do when asking her to stand up-- without allowing my voice to tremble. I gave Mom my usual hug, holding her in that embrace a few seconds longer than normal. She hugged me back, one frail, tiny hand patting my massive ribcage. As sometimes happens, I found myself wondering who was comforting whom.

And then I led her to her bedroom, to sleep.

Another day with Mom that I won't get back.


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Dad's circuit

Dad spent almost four hours driving around northern Virginia today, giving back the food containers from the people who have given us food. Today's circuit, five or six stops in all, took Dad all the way down to around Woodbridge, and way up close to DC. As always, our thanks to all the good folks who have left us something to eat.


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touring and walking

I took Mom for a spin, visiting a local park and several local schools, all of which seem empty thanks to summer vacation. What's notable today is that I asked Mom whether she felt that we could do this without the wheelchair, and she said yes. So we walked carefully out to the car, Mom and I, braving the nasty heat and humidity, getting into the car, then rolling down the windows and cranking up the air conditioner to blow out all that hot air. We drove for a while with the windows down until Mom decided that her side was too windy. She closed her window, and out of solidarity, I closed mine.

Our drive took us past Woodley Hills, the local elementary school my brothers attended (I went to Mount Vernon Woods Elementary, across Route 1). I asked Mom whether she remembered which of us attended Woodley Hills; either she didn't remember, or she wasn't inclined to answer. I took us slowly through the school's front parking lot, giving Mom a chance to take the school in. Then we sped up and drove past Mount Vernon, the estate of George Washington, and the spot where the George Washington Parkway begins.

Readers who have been reading this blog since last year know that Fort Hunt Park lies at about Mile 2.75 along the parkway. I drove us to the park, and we cruised slowly around the mile-long circle drive that encompasses most of the park. I had thought about getting Mom out of the car and letting her walk around there a bit, but decided against it. The park was crowded, and I had wanted Mom to enjoy a bit of shade and silence.

We drove back toward home, but took a detour and swung by my old alma mater, Mount Vernon High School. Our loop around the school's exterior proved unenlightening; the school looks pretty much the same as it did when I was a student there from 1983 to 1987. One of these days, I might take a stroll through the school's hallowed halls. A while ago, I was told that MVHS now has the worst discipline problems in Fairfax County in terms of the number/frequency of suspensions. That's pretty sad. I could rant at length about American education and what needs to be done, but this blog is no longer the place for that.

We wended our way back home. Instead of taking Mom straight inside, I decided to walk her around the back yard. For the most part, I allowed her to stop wherever she wanted, but eventually it became obvious that Mom would, if left to her devices, stop every few paces and fondle the petals of this or that flower. She plucked two sets of blooms off one of our bushes, and I gently pulled her away from the bush. The point was to get Mom moving again, not to allow her to stand in one place for a long time. With Mom up and about thanks to the Decadron, she needs to exercise as much as possible.

The walk back up the deck and to our back door went fairly well, but it was obvious that Mom's legs would have been too weak to use the deck stairs. Instead, we went up the wheelchair ramp, which meant mounting only two steps, followed by an incline. I brought Mom in, got her to exchange her shoes for her slippers (thanks again, Mrs. Kopf), and managed to get her seated in her usual spot in the living room. I took Mom's flowers and placed them in a tiny, elegant vase given to us by my former French teacher, Mrs. Landgrabe; the flowers fit perfectly, and the vase now sits at our living room's bay window.

We've been wanting to get Mom to move around more, and today was the first day of real movement for her ever since she restarted the Decadron. We hope we'll be able to do this again with increasing frequency.

Today's outing began with me helping Mom up off the couch. Every time my mother succeeds at standing up, I give her a big hug. Her answering smile suggests amusement, as if she were aware that I was being patronizing, congratulating her for doing something that's ordinary for most people. But that's what I live for: my mother's smile. I'll take as many of those as I can get.


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walking better, and a discussion about the future

Mom's balance and gait have improved, and she talked with me a tiny bit when I first saw her today. She even went over to the kitchen and tried washing some dishes. We sat her down for lunch, and she went at it slowly but steadily.

I guess this is what we can expect from here on in: a downward-trending but sinusoidal pattern that indicates a slow overall decline marked by moments of improvement. The Decadron has been helping with Mom's new edemas. How long it will help, and exactly how much the tumor has progressed in other parts of her brain, is something we'll have to talk with the doctors about this coming week.

As mentioned a long while back, we want to get Mom back over to MD Anderson in Houston, and also to the National Cancer Center in Bethesda, Maryland again. The goal will be to see who has what to offer in terms of second-line therapies. This sort of long-distance travel can't happen until after Mom's bone flap has been put back in-- a procedure that is itself contingent on Mom's having finished her initial in-tandem radio- and chemotherapy (it is, finally, truly in tandem, and has been for a few days). So the future looks a bit like this:

1. Mom finishes her radio- and chemotherapy, then begins to enjoy a four-week break.

2. Mom gets her synthetic bone flap put in, probably during the break from therapy. This period will be dangerous: re-incising her scalp reintroduces the original risk of MRSA flareup.

3. Mom, Dad, and I fly down to Texas to visit MD Anderson and stay with relatives there. Hopefully, this is will happen during Mom's four-week break, but this depends on how Mom heals from her bone-emplacement surgery. Mom might still be able to travel even after her break is done, because the second phase of standard treatment is chemo-only: she can take her Temodar no matter where she is.

4. Depending on what MD Anderson has to offer Mom in terms of second-line therapy, Mom and Dad might remain in Texas for quite a while. If MD Anderson actually has something to offer in terms of innovative treatments and/or clinical trials-- then Mom will remain in Texas while this treatment occurs. Dad and my relatives will provide Mom 24/7 home care, just as Dad and I are doing here, with help from my brothers when they can make it over. If not, if the docs at MD Anderson feel they have nothing more to offer Mom, then Mom will come back up and stay with Fairfax Hospital. The National Cancer Center will remain in the loop since Mom signed a consent form to be part of their ongoing GBM research.

5. I've already made it clear to my relatives that Mom will spend her final days in Virginia. This is where her life is; it's where all her friends are, and it's where her immediate family is: her husband, her sons. If Mom declines rapidly while in Texas, we'll talk with the docs about our wishes and have her brought back up to her home to allow her story to end in northern Virginia. As painful as it is to do this, we have to think about the inevitable future.

6. No matter when we do finally get down to Texas (hopefully late September, but possibly later), I personally won't be there that long. The house in Alexandria can't be abandoned, and I can't ask my brothers to house-sit for an indefinite period: they both work all week long and have their own places to take care of. Both are usually dead tired when they visit home. Expecting them to take over chores like lawn care and other forms of maintenance, along with handling the bills that will be arriving, is too much. I'm the one with all the free time. Dad, meanwhile, needs to stay with Mom: he's the one who knows the most about how to care for Mom's bodily needs, and he can help my relatives understand their part in how to care for her.

So I'll come back from Texas after about a week and will manage the homestead alone, talking with Dad via Skype or cell phone or email whenever bills arrive, or whenever we need to deal with medical paperwork. There are household projects that need doing, and I might be able to get them done during this time. I'll also have to find work, and since Mom will be down in Texas, I won't be limited to working from home. If, however, it turns out that Mom will be coming back from Texas in a matter of weeks, then I might just bite the bullet and take up private tutoring.

As you see, there's always a lot to think about, and this includes thinking ahead. Meanwhile, we can enjoy the fact that Mom's balance and ability to walk seem to have improved for now. I'm taking her out for a spin at 4PM; we'll visit a local park, and I might even get Mom to walk around a few minutes before we retreat to the air conditioned comfort of the car. It's hot today. Hot and humid-- my least favorite weather.


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Mom's latest MRI

Not long ago, Mom had her most recent MRI. Here's the last part of what the report said:

IMPRESSION: Improvement in the appearance of the tumor within the left frontal lobe with progression of tumor and edema in the right frontal lobe when compared to a previous study from Fairfax Hospital dated 6/3/2009.

This was dated 7/21/2009. I suppose it should be no surprise to learn the tumor's on the move, but it's still hard to read this. It certainly helps explain Mom's behavior: she's suffering from an edema, like before, but in new parts of her brain.


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done for now

No more home care nurse. Dad made the call to Inova Home Health Services; the home care nurse won't be coming back. There's no reason for her to be here anymore: she had come primarily to redo the dressing that covered Mom's PICC line, but Mom no longer has a PICC line. She was also supposed to do blood draws for blood work, but that can be done right at the hospital, and Dad has arranged for Mom to slip over to the proper clinic every Tuesday. This cuts out the middle man, too: one of the things I haven't blogged about has been our frustration with Inova HHS's inefficiency at getting the blood work data to the proper offices. Now, the hospital will have the data directly, since Mom's blood work will be done on the premises.

It's strange not to worry about the PICC line. In place of all that, we now have to keep track of Mom's Temodar (chemotherapy in pill form), her Bactrim (to guard against pneumonia), and her Decadron (steroid to reduce any swelling of brain tissue). Dad keeps detailed notes on all this, and gives Mom her medicine in a timely manner.

This is what care means. It's the everyday rituals, the mundane gestures, the constant, moment-to-moment attention. Care isn't just emotion-- all the useless weeping and wailing that come from not understanding and accepting a situation. To steal a thought from Dr. M. Scott Peck, care is action. It's what we do, not merely what we say or think. Talk is cheap, and emotions come and go. Steady action, steady presence-- these are the marks of true care.


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a pleasant visit

Mom received a visit from an NALC coworker today-- Mrs. Lim, who came over with her husband and daughter-in-law. It was, I think, a great occasion for Mom: our guests turned out to be wonderful people who had many questions about Mom's condition and who, through their presence, made Mom's day brighter. Mom was somewhat more verbal today, especially when our guests first arrived, but later she sat back and simply basked in the conversation, her fidgety hands going after the plated grapes and apple slices, rearranging them in new patterns. I'd like to think that she was trying to listen, even if she wasn't actively participating in conversation. Mrs. Lim held Mom's hand, and from what I've seen, that's the best sort of therapy for Mom.

Many thanks to Mrs. Lim's daughter-in-law, Lydia, who acted as the interpreter today. It's a good thing she was there; my poor Korean wouldn't have been sufficient for the task. My respect also goes out to Mrs. Lim's husband, with whom I spoke about the house's renovation. We made the acquaintance of a good family today. It's nice to know that they, along with all the other good people Mom knows and loves, are part of Mom's circle of care.


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progress and a thank-you

The Decadron is definitely helping: Mom's gait is steadier, her balance is much better than it was yesterday, and she's decidedly more reactive.

Also: many thanks to Mrs. Farwell for dropping off a beautiful load of Korean food for us and Mom.


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slight improvement, indeed

Mom's walking better and is somewhat verbal today. The Decadron is working as advertised. What this might mean, though, is disturbing: Mom was verbal before going back on Decadron; she then worsened, and now she's improved thanks to the Decadron. In other words, the Decadron doesn't help us understand why Mom experienced the dip in the first place.

We'll be talking with doctors about this, but now, we have to get Mom over to her therapy. Today is Session 19 out of about 33. A few more weeks of this to go, then we can worry about getting Mom's synthetic bone flap put in.


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slight improvement?

Mom's had two doses of the Decadron she'd been prescribed, and by this evening, she had managed to utter a few weak phrases. It's not enough to say she's truly improving, but the steroid might be helping.

Dad had to go out and get another prescription med called Bactrim, which is to counter the possibility of pneumonia. Remember that Mom is once again vulnerable to infection: she's back on Temodar, which affects blood count, and is back on Decadron, which is what exacerbated her original problem with MRSA. Now is the time to tread lightly, to watch Mom's hygiene as well as possible, and to make sure she gets through these final few weeks without even a hint of infection.


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PICC line, steroids, and Temodar

Dr. Meister-- for whom we waited over an hour-- recommended that Mom not get a new PICC line installed because of the risk of infection. This wasn't an issue before because Mom had been receiving daptomycin through the PICC: the antibiotic had been keeping the line infection-free. Otherwise, the doc felt that Mom's blood work looked good.

We did, however, find out that Mom has lost about 8 pounds since April. Dr. Meister wanted to consult with Dr. Tonnesen about changing Mom's Temodar dosage, given her weight loss, so this was a question we had to take up with Dr. Tonnesen. The hospital was our next stop, as Mom had a 2PM radiotherapy appointment.

We got to the hospital around 1:45; Mom was done with her treatment by 2:05, and we all found ourselves in our second exam room of the day. Dr. Tonnesen asked us how Mom was doing; we talked about her weakness and her nonverbal state, which has been worsening. Dr. Tonnesen told us that he had thought Mom was still taking Decadron (steroids), as this would have alleviated some of the cognitive/verbal issues. We reminded him that Mom was taken off the Decadron because of her infection, so the doc gave Dad a prescription to go get more Decadron.

As for the Temodar, we were told to expect a call from Dr. Meister later today. He'll tell us what the new dosage will be.


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full day

We're leaving soon for Dr. Meister's office; the appointment's at 11:45, according to Dad. After that, we've got the regular 2PM radiotherapy appointment plus a sit-down with Dr. Tonnesen, and then later in the afternoon, around 4, a visit from Pastor Jeri.


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Mom's mental and physical state

Mom is just as nonverbal today as she was yesterday, if not more so. She's also acting a lot more confused: she doesn't respond with the same instinctive accuracy she had shown up to now (for example, she doesn't immediately let go of a spoon when I ask her to, so I have to pry it gently out of her hand). Mom seems increasingly caught up in her own world; interacting with her requires us to be directly in front of her, dominating her field of view. She'll nod when asked certain questions, but will seem to ignore others. I doubt this is deliberate; it's merely a function of her condition. Whatever the reverse of aphasia is, that's what Mom seems to be manifesting. With aphasia, whatever's inside the mind has trouble getting out because the channels are scrambled along the way. Whatever Mom has now is the opposite: our attempts to give her commands often elicit incomprehension. Signals are being scrambled on their way in.

We're approaching a point where, sometime in the very near future, it will be necessary to feed Mom by hand. Her ability to feed herself is eroding; she gets stuck in a cognitive loop whenever she finishes a bowl of soup or dessert, endlessly scraping the bowl's bottom with her spoon for no reason other than to scrape away. She can also become distracted by what she sees on TV; when this happens, she'll stop eating and stare, transfixed, no longer conscious of her meal. It takes some prodding by us to get her to refocus on her food.

Mom is also much weaker on her feet, and her balance is in tatters. She can still walk, but to walk with Mom is to dance with her-- I hold her by both of her hands, walking backward while she shuffles timidly forward. She still has a sense of humor, because she'll move her arms along with me if I pretend to swing them as if we're dancing, sometimes even smiling while we dance.

But it's not all fun and games. Another reason why I hold both Mom's hands is that it allows me to control her repeated attempts to grab at small items on tables and countertops. She's still as fidgety and grabby as ever; having just taken her PICC line out a second time, she's shown us that this compulsion never left her. If anything, it's likely to worsen.

A lot of this might be attributable to the effects of the radiotherapy. Tonight, Mom will also be restarting her Temodar. Along with affecting her blood count and increasing the likelihood of reinfection, the Temodar may cause nausea, forcing Mom to eat even less than she already does. Mom's appetite is often fairly healthy, but over the past few days, she hasn't been eating nearly as much, a trend that's likely to continue if she does become nauseous. She sleeps a lot more; in fact, she's been napping for nearly half an hour (it's 4:58 as I type this; the blog entry's time stamp shows when I started typing this entry). Her siestas are lengthening.

We need to know what's going to happen with Mom's PICC line-- whether it'll be reinstalled, or whether she has scarred the veins in her other arm as well, thereby precluding further PICC line use. Since Dr. Meister's office is now in charge of this aspect of Mom's care, we'll know more tomorrow. Mom won't be getting a new PICC line today.


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Mom's PICC line out AGAIN

It just never ends.

Dad told me that Mom pulled out her PICC line sometime in the early morning-- around 5AM. She rolled over in bed and tapped him on the shoulder; Dad "felt something plastic" in the dark, and knew right away that disaster had struck again. He has since been calling to schedule Mom for another short-stay clinic berth to get her PICC line reinstalled. The clinic has yet to respond with a firm schedule. Dad's hope is to get Mom into a berth after her radiotherapy is done; for the moment, he's not too worried about how she's doing, as she doesn't seem to be manifesting any problems, like hemorrhaging. Dad measured the PICC line, and its length matched the stats he had been given during our hospital visit last week: the entire PICC line had again come out. Nothing remained inside.

So the big question was obviously, How did Mom get through all that bandaging-- the bandaging she was supposed to have had ever since the first time she removed her PICC? Dad's answer shocked me: after that first night back home from the ER last week, he hasn't been bandaging her arm to cover the PICC. Instead, he's been covering the PICC with a thin elastic cuff, or some other such frail shield. "She was doing so well for six days," Dad said. I have no idea why Dad would assume that Mom's previous behavior would be a guide for her future behavior, given how often her state of mind has been changing. Dad also said he had tried reasoning with Mom: "You don't want to go back to the ER again, do you?" I shook my head in wonder: we've known for a long time that Mom is no longer capable of proper reasoning. She is, in many respects, like a forgetful, innocent toddler.

Keeping the PICC line out of Mom's reach is so absolutely fundamental that this incident blows my mind. It didn't have to occur; prevention required only a bit of vigilance and a proper understanding of Mom's mental state. Blithe assumptions that she's "doing so well" are completely unwarranted. From now on, I will be the one to make sure Mom's arm is properly secured every night. Shame on me for not checking this from day one.


UPDATE, 12:49PM: Dr. Meister's office, which has taken over responsibility for monitoring Mom's PICC line (Dr. Yoho, the infectious disease doc, was seeing Mom through her daptomycin regimen), doesn't think Mom needs to have her PICC put in today. We're meeting with him tomorrow, so we'll know more then.


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less verbal

Mom barely talked at all today. Most of her communication was through her facial expressions and gestures-- nods, shakes of the head, etc. She also got the sniffles, which is always cause for caution.

Despite the ominous signs of a possible cold, today marked the end of Mom's antibiotic regimen. She's now officially off the daptomycin, but her PICC line will remain for the near future: the home care nurse still needs to draw blood samples, especially as Mom is about to restart her Temodar, a chemotherapy pill that will depress her immune system and once again make her vulnerable to infection. The docs hadn't wanted her on Temodar at the same time that she was on the dapto; they wanted her to be done fighting her MRSA before moving forward with the chemo.

So that's where we are now: about to take our first step into a very uncertain immediate future. Off the dapto, back on the chemo, and we'll see whether she's now strong enough to take the chemo without once again becoming infected. Mom has, unfortunately, proven very infection-prone, and her current self-sabotaging behavior hasn't helped matters (such as when she scraped her leg back open recently-- this after having tugged out her previous PICC line). In the midst of all these worries, her silence today seems almost like a minor matter, but in truth, we have no idea how significant it is.

Dad's got a medical checkup in the morning, then we've got Mom's radiotherapy in the afternoon. On Thursday, it's a full plate: a morning appointment with Dr. Meister, Mom's radiotherapy, another appointment with Dr. Tonnesen, then a visit from Pastor Jeri. On Friday, Mom's got radiotherapy as well a visit from a Korean friend from her old place of work (plus one or two other people?). It's going to be a busy rest-of-the-week.



ADDENDUM: I need to sneak in another note of thanks to the Criswells and to the Doe family for the food they gave us. I know I want the recipe for the rosemary chicken and potato dish, as well as for the addictive banana cream pie, and my brother David raved about the Tex-Mex "calupa" (that's how it was written on the packaging... not "chalupa"?) Thanks, as always, to all the good folks who bring us food, whether as part of the Friday Congregational Care Council's wonderful gesture to us, or as a friendly delivery any other day of the week.


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reworking Mom's meals

As Mom's personal chef, I have to adapt to her changing state of mind. Lately, Mom has stopped eating the Korean way: instead of picking bits out of her side dishes and integrating them with bits of her main course, she's been attacking each individual dish or bowl one at a time, often lingering obsessively over a bowl after it's been emptied, using her chopsticks or her spoon to try to clean the bowl out as completely as possible. It's only when I take away the empty bowl (or dish) that Mom starts on her other dishes. She usually eats the main dish first, then tackles the side dishes (called ban-chan in Korean).

Korean side dishes are usually pickled, which means they're salty and strongly flavored. They're not meant to be eaten straight, a bowlful at a time. Instead, you're supposed to scoop up a small amount of the side dish, place it atop whatever qualifies as the main dish, and eat both together.

How, then, to solve Mom's problem? I see two possible solutions, a French one and a Korean one. The French solution would involve feeding Mom a full meal, one little course at a time. This might work best with Western food-- say, spaghetti and salad and garlic bread. It would still be a bit strange (most folks normally prefer their garlic bread alongside their spaghetti), but it would allow Mom to focus on one thing only while keeping the components of the meal separate. Since Mom sometimes mixes incongruous items together, this is a good approach to follow.

The Korean-style solution would be to use bibimbap (rice mixed with vegetables and red pepper sauce, often with a fried egg, and sometimes with some sort of meat or seafood) as a template for plating and service. Contrary to the French-style approach, I would take every component in the dinner and lump it all together in one plate or bowl, bibimbap-style. Again, Mom would have only one item on which to concentrate, but every component of the meal would be in front of her, for her to mix and match as she pleased. The obvious catch here is that all the components would have to be in harmony with each other: two incongruous items, if mixed, could produce some nasty, mutant flavors. But that's not usually a big problem with Korean food: the very nature of the side dishes ensures a general harmony.

So Mom might be in for a few changes in the meals to come. She's in a state where she rolls with the punches, eating pretty much whatever is placed in front of her, so I'm pretty sure she won't care about the upcoming paradigm shift.

Improvise, adapt, overcome. I love that motto.


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off soon

The one bright spot this morning is that Mom got to see her new bathroom cabinet, which replaces the old hall closet. The cabinet finally arrived earlier today; it had been ordered before Mom's cancer made its appearance. At long last, the parents have a place to store their bathroom-related items. I think Mom's happy with what she'd bought.

We're off to radiotherapy now; will be back in a couple hours.


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2 appointments?

We may or may not have two appointments tomorrow. The first appointment, at 10AM with a nurse practitioner at Dr. Meister's office, is likely to be cancelled; the second one is, of course, radiotherapy, which absolutely cannot be cancelled. The first appointment strikes us as redundant, which is why we're probably going to cancel it: on Thursday, we're scheduled to visit Dr. Meister at his other office to get essentially the same exams done and have the same questions answered.

Both of the morning appointments are about Mom's chemotherapy. As Dad and I were talking tonight, we realized that one question has been bothering us: we have no clear understanding of how effective the chemo is supposed to be. One doctor had told Dad that, for GBM patients like Mom, chemo is ineffective without radiation. This was the rationale behind not catching Mom up on the chemo she's already missed due to her infection: taking the pills before restarting the radiation would have yielded no results.

And this is where we're confused. If chemo without radiation is ineffective for people like Mom, then (1) why must she undergo radiotherapy 5 days a week, but take Temodar 7 days a week? And: (2) why will Mom be placed on a chemo-only regimen that will last several months after she's done with her four-week break from the in-tandem therapy? If chemo alone is ineffective, why bother with several months of chemo? The doctors' claims don't add up.

I imagine that there are ways to make all the information seem self-consistent. But part of me is wary about all this. How can I, a non-expert, distinguish between a valid explanation of the apparent inconsistencies in what we've been told about Temodar, and an ad hoc explanation that's little more than a tossed-off rationale meant to mollify the patient's worried relatives? Bleh... I won't dwell on this problem: it's the quick route to paranoia.

I'll be calling Dr. Meister's office in the morning to see whether we do indeed have to come in. If I don't get a clear answer from the office (Dad mentioned he had some difficulty with a secretary whose English wasn't particularly good), I'll cancel the appointment, and we'll see Dr. Meister anyway on Thursday morning. Why see him twice over the span of three days, and for no good reason?

There-- settled. Now I need to hit the hay.


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meet the Criswells

We had a very nice sit-down with Reverend Bob Criswell, our church's previous pastor, and with his son Jim, the church's current music director. Jim brought over a truckload of his favorite dish, made by him and his lovely wife Anastasia-- rosemary chicken and potato, with Greek olive oil and garlic cooked to the point of sweetness. I think I'll need to ask Jim or his better half for the recipe.

Pastor Criswell looks great for a man who's gone through his own share of medical ordeals. I won't talk about them here, but suffice it to say that it was touching to see him hugging Mom: two people who know only too well what it means to be very, very sick. As with Mom, Pastor Criswell's woes began shortly after he retired.

Dad and I talked with the pastor and his son, with Mom largely spectating. While the conversation ranged around several topics, the one that occupied the most time was travel-- train travel, plane travel, Europe, America, Canada, Korea, Israel, etc. Pastor Criswell said he still wanted to meet with me to talk about my book (he's one of only a handful of people interested enough in the subject matter to want to talk about it). I don't know when I'll be able to make it up to New York, where he lives, but I look forward to the discussion.

We were all talking so happily that we forgot to give the Criswells our own gift: two of Dad's homemade rum cakes. Dad flew out the door after our guests had left and successfully delivered the cakes. Mom and I, meanwhile, dug in to the Criswells' lovely dinner, which truly was scrumptious. Many thanks to Jim and Anastasia for their kind efforts. Dad is already eying the Criswells' other gift: a huge container of banana pudding.


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off in a second

We're about to leave for Mom's radiotherapy. Later this afternoon, we're to be visited by our church's former pastor, Bob Criswell, and his son Jim, who is still working with MVPC as its music director. I understand they'll be bringing yet more food... pretty soon, we're going to have to invite all these good folks to sit down and eat with us, just to keep our fridges from exploding!

PS: Many thanks to Mom's friend (sorry I forgot your last name), who came over with a huge container of kimchi at noon today. However, I need to remind folks once again to PLEASE CALL BEFORE COMING! Simply dropping by unannounced is not acceptable, given Mom's condition and our occasionally hectic existence.

I'm going to have to take the suggestion of a friend who told me that I should put up a sign in the front yard, along with a bold announcement in this blog's banner.


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how she was before

With sincere thanks to Mr. Perry for providing this photo.


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laugh or cry?

"I don't know whether to laugh or cry" is a sentiment we voice when a situation seems outlandish, but poignantly so. Mom has me feeling this way nowadays, as her behavior slips into the ever more bizarre. We now have to watch her more closely at mealtimes: left to her own devices, Mom might do any of the following:

1. Tip the water from her glass into the bowl or plate holding her main course, resulting in a soggy or diluted mess.

2. Dip a napkin into her cup, then begin wiping her TV tray with it.

3. Put food into her mouth, chew it for a while, then forget that it's in her mouth.

4. Use her chopsticks to take food out of its proper bowl, place it onto a napkin, then attempt to roll the napkin up to do who-knows-what.

5. Take the remains of one drink and pour them into another, perfectly fresh drink.

All five of the above behaviors occurred at dinner today. Along with the above, Mom took the rotisserie chicken she'd been given, shredded it with her fingers, then separated the flesh into two neat, equally sized piles on her plate. After several minutes, I saw that she had eaten almost none of the chicken. And after she had had a chance to clean her greasy fingers with some sanitary wipes, she poured out a puddle of water onto her TV tray, then began using her sanitary wipe-- which was tiny-- to try to sop up the puddle.

Laugh or cry? Me, I sighed and cleaned up after Mom as best I could.

UPDATE, 10:20PM: Mom seems less fidgety now. She watched the latest episode of "The Next Food Network Star" with us, and now she's watching a Korean drama with Dad. Because Mom's on the Korean channel (MBC America) all day, I'm learning more about these dramas than I ever wanted to. Blech.


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visits

Many thanks to Mrs. Kopf and Mr. Perry for visiting us today, and for bringing over food for Mom and the rest of us.

Thanks as well to Mrs. Daw for dropping by with a pie and cans of shik-hyae.

Just a respectful reminder to any potential visitors: please call at least 24 hours in advance before dropping by. Suddenly dropping by can be a problem-- we might have other visitors, or Mom might not be in any condition to see people, or Mom might become stressed by the sudden appearance of a visitor. As Mom's guardians, Dad and I are responsible for reminding people about this rule. Please respect it. I've mentioned it on the blog several times, now, and am thinking about making that message a part of the blog's banner, because too many people still ignore it.


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salut aux Normands!

Je vois sur mon SiteMeter que je reçois parfois des visites de quelqu'un en Normandie (Moulineaux, Haute Normandie). Mon "frère français" Dominique m'a rappelé qu'il a de la famille là-bas, mais j'oublie qui c'est. Merci pour les visites, mais... qui êtes-vous? (Laissez un commentaire en cliquant le lien ci-dessous, svp!)


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scratching

Mom's awake. She's apparently scratched her leg back open. The way Dad put it was: "She just set herself back a week in terms of healing." Self-sabotage seems to be a recurrent trope. Oy gevalt.

UPDATE: It occurred to me that the above paragraph might cause some people to wonder whether Mom's going back to the ER. No, she isn't. It's not as though she'd scratched her leg to ribbons; she simply scratched open a few itchy spots around the harvest site on the back of her left thigh. Dad has bandaged the area heavily to prevent further scratching.


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a note to the Mad Googler:stop typing "blogs.com"!!

An idée fixe is a thought that gets so stuck in your head that, even if you know you shouldn't be thinking it and/or acting on it, you keep coming back to it, anyway. It's a fixed idea.

Someone who visits this blog is suffering from an idée fixe: he or she keeps typing "kevinswalk.blogs.com" into the Google search window (I can see this activity on my SiteMeter), and they really need to wake up and realize that the domain name isn't "blogs.com" but "blogspot.com." Why is this important? Because that person might decide to send the wrong URL to a friend who wants to visit this blog, and when they do, they'll discover that "kevinswalk.blogs.com" doesn't exist.

If this mad Googler is indeed under the thrall of an idée fixe, as I suspect s/he is, I doubt that this very public reminder will help shake them of the problem. Having labored under many fixed ideas myself, I know how easy it is to make the same mistake repeatedly, all while knowing that I should have learned from the previous twenty mistakes.

The mad Googler's repeated Googling of my site leads me to believe that they don't know how to "bookmark" a link on their Web browser, which further indicates that they may not be all that familiar with how to surf online. Dear Mad Googler: your homework is to ask your kids, or your grandkids, or your students, or some random youngster how to bookmark websites that you repeatedly visit. Instead of having to search for the website through Google every single time, clicking the bookmark is a much, much easier way of returning to the site.

Of course, if you're visiting the site this often, mightn't it be even better to try memorizing the URL? After all, how hard can that be, if you're motivated to come here often? And once the URL has been properly typed, most modern browsers will remember the visit as part of one's browsing history, which means you'll only have to type part of the URL the next time you want to visit. (Or, as mentioned, you can just click your bookmark.)

"Kevin's Walk at BlogSpot dot com." See? Not hard. For navigation purposes, "Kevin's Walk" is written without capitals, spaces, or punctuation: kevinswalk. "BlogSpot" should be easy to remember, too: it's the spot where the blogs are.

Hey, I'm just tryin' to help.

At a guess, the Mad Googler is an older person. I know this person uses Cox as their ISP, and is based in Virginia. Their operating system is Microsoft WinNT, and their browser is Internet Explorer 7.* They might even be someone I personally know. Hello, you.

I'd love to write a long essay about the American psyche and its uncomfortable relationship with new technology (quite different from South Korea, where 90-year-old grandmothers can be seen frantically texting people on their cell phones), but I'll save that rant for another day.

---

*Yes, all these data are public. And yes, the word "data" is plural; the singular is "datum." The same goes for "media," whose singular form is "medium." Some might counterargue that "common usage" indicates that "data" and "media" can be used in the singular. That's a good, respectable argument-- one I've made in the past about other turns of phrase-- but I think the usage of these words in the singular needs to be even more common before I finally give in to the language barbarians.


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it's after noon, and...

Mom is still sleeping. At this point, since we're into Week 3 of the radiotherapy, it's probably safe to assume that Mom is feeling the effects of what she's been going through. Fatigue is just another thing we have to incorporate into our daily "routine." The word "routine" is in scare quotes because, truth be told, almost every single day brings us something different in terms of Mom's symptoms and actions. Sometimes the changes are small, like the almost-palsied quivering of Mom's right hand; sometimes the changes are more significant, such as when Mom goes from verbal to nonverbal and back.

The latest major problem is one I've written about before: Mom's tendency to grab at, fondle, and pick at anything she can reach, especially cloth. Whether it's her own bathrobe, or a blanket with strangely patterned stitching, or even a paper napkin, if it's within Mom's reach, it becomes fair game. Mom can't explain her own compulsion; she's aware that it's happening, but once she starts, the only way to stop her is to take away the objects that are fascinating her. It used to be easy to do this, but lately, Mom has begun to resist having objects taken away. She doesn't resist strongly; she merely tightens her grip on the object she's holding. once the object is taken away, her hands go limp for a moment, then begin searching for something else to feel. Her fingers obviously need something to keep them busy. When she and I watch TV together, I hold her right hand, which squeezes my left hand in an agitated manner.

My brother Sean has suggested buying for Mom certain kinds of toys that will allow her to give vent to this compulsion. It's a good idea-- Mom would have something endlessly fascinating in hand, and the objects around her wouldn't suffer any more damage. As a family, we've floated some toy ideas, and have largely agreed that several different types of toy would be good: Dad suggested, for example, a sliding tile toy; I've been thinking more along the lines of a snake puzzle. What we want to stay away from are things like stuffed animals, which would become targets for Mom's plucking fingers (she's already begun to de-fur the hem of her bathrobe). The toy needs to be a single piece with movable parts-- something to fuel fascination, allowing the toy to divert Mom's attention from damaging other things. I have no idea whether Mom's compulsions will become stronger as her cancer progresses, but just in case, the toys shouldn't be easily breakable.

At some point, either Dad or I will step out and buy a few items for Mom. Here's hoping the strategy works.


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a quiet Saturday morning

It's after 10:15AM, and Mom is still sleeping. The process of moving her from slumber to lunch-readiness takes a couple hours, and is entirely guided by Dad, who gets up far earlier than I do. He monitors Mom, helps her to the bathroom, deals with clothes and bed linens (I sometimes help when there's laundry to be done), fixes Mom her daily coffee, hands over her Korean newspaper or Washington Post Magazine puzzle, helps her wash up and dress up, redoes her bandages, makes sure she takes her morning meds, and leads her out to the living room for lunch and/or TV. During the week, Mom needs to be out in the living room and seated by about 12:15 or 12:30, so that she has time to handle lunch without too much pressure, and can then leave the house at 1PM to make her 2PM radiotherapy session.

Today, my own agenda is fairly simple: first, prep some Korean porridge for Mom; second, go out into the back yard and start chopping some of the wood pile down to size. A while back, Dad and David cut away quite a few low-hanging branches of one of the trees in our back yard so that the ramp-building crew could put up the ramp without impediment. The branch removal also serves to give us, the family, a clear path when wheeling Mom out in her wheelchair. Anyway, the branches have been sitting in a pile near the ramp, and need to be cleared out. I can't say that I'll have everything cleared by later today, but-- suburban weakling that I am-- I hope to put a small dent in the pile.

Pastor Jeri will be coming by later today, between 2 and 3PM, I believe. This will be good for Mom, who needs the interaction. Beyond that... it's just a matter of watching over Mom and making sure she doesn't get herself into trouble.


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in case you were curious

Here's a picture of the PICC line that Mom pulled out of her chest and arm. The angle of the shot makes the line look shorter than it is.

The part of the PICC that hangs outside of the arm is next to my thumb. That's where syringes are hooked up. The bundle of tape is what secures the line to the surface of the arm at the point where the PICC line goes through the skin. The thin, nondescript end is the part that originally sat close to Mom's heart.

The fact that Mom was able to extract this entire line without injuring herself is nothing short of astounding. Things could have been much, much worse. And now, knowing what we know about Mom's increasing tendency to fidget and fondle, it's up to us to keep extremely close watch over her.


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thanks

Many thanks to my brother David's friend Cathie, who provided us with beautiful flowers, strawberries, and apples. Thanks to David for a four-berry pie and a mess of freshly picked berries from Catoctin Mountain Orchard. Thanks as well to this week's Congregational Care ambassador and family friend, Mrs. Doe, who just delivered our Friday dinner. Support comes from everywhere, and is always appreciated.


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out and home

Pastor Kim arrived with near-Swiss precision at noon today. His visit with Mom lasted almost exactly an hour before we had to leave for Mom's therapy. Therapy itself went quickly-- Mom was in and out. Dad and I are starting to get to know the people whom we see in the waiting room nearly every day, including the very nice lady who speaks French with me when she sees me (her husband was French; she speaks fluent French and describes herself culturally as moitié-moitié, or "half-and-half" French and American). Dad has apparently been talking about the family while I've been busy parking the car: over the past few days, strangers in the waiting room have asked me about my trans-American walk, life in Korea, etc. I imagine these good folks would have questions for David and Sean, if they had the chance to meet my brothers.

So today's Mom-related agenda was done in a flash. Dad's out shopping for food and picking up the most recent MRI data; Sean's here, watching over Mom, who needs constant surveillance these days thanks to her wandering hands and strange compulsions (she tried eating a paper napkin a few minutes ago).

About those compulsions... as always, I've tried to strike a balance between (1) providing information about our family to Mom's relatives, friends, and acquaintances, and (2) protecting Mom's privacy and dignity. However, the blog also serves as an outlet for me, and I try to report what's going on as thoroughly as possible; in other words, you, Dear Reader, need to be prepared to encounter increasingly uncomfortable material on this blog as Mom's cancer progresses. I'm sorry, but Mother Nature is dictating much of this, and it will be more and more difficult for me to blog euphemistically or in the abstract. I've already preserved the reader from several bits of unpleasantness, but I can't guarantee that subsequent entries will be so sanitized. Ask yourself if you're ready for this. If you aren't-- if you have trouble witnessing struggle and pain, if you're the sensitive type who can stand only a limited amount of anguish-- then for your own sake, please turn away. I won't mind.


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home

We left the hospital at 10:15PM and got home a bit before 11. Driving was slow, thanks to the thunderstorm, but the sky was entertaining: huge sectors of it lit up, flash after flash, at a rate of at least 1-2 bolts per second. It was like driving through the great, flaring brain of a planet-sized angel.

Mom is in bed now, her new PICC line in place. The daptomycin procedure went fine, so we know the PICC line works. Tonight, we'll try to get some rest. Our apologies to the people who left messages on our answering machine, but we won't be contacting anyone until sometime tomorrow; we've all been on the go since 10:30 last night, and we're too pooped to stay up and talk.

Cancer or not, life with Mom has never been boring.


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light at the end of the tunnel

Mom has had her new PICC line installed, but this time it's in her left arm. The gent working on the installation said he kept encountering scar tissue along the brachial route he had chosen on the right side. The procedure started around 6:30, but because the first attempt had gone awry, the procedure wasn't finished until around 8PM.

Some nurses came in a few minutes ago and took a chest X-ray of Mom (they cooed about how cute Mom was); this image will be examined to see whether there are any problems with the new line.

Once we get the all-clear, Dad will administer Mom's daptomycin for the evening. He had planned ahead this morning, packing up and toting along the syringes and other materials necessary for Mom's antibiotic regimen. We both agreed that it would be wise to do the intravenous injections here, while at hospital, both to test the new PICC line and to be sure that help would be at hand should a problem arise. What better place to have a medical crisis than right inside a hospital, no?

So we're awaiting X-ray results and prepping to administer the dapto. After that, we'll be heading home. Mom has a new set of bandages and stockings to be applied to her upper arm to prevent her from plucking out this PICC line. Let's hope we can get Mom through the rest of her dapto regimen without incident. She has about one more week to go.

UPDATE, 9:16PM: Mom's been given the all-clear, so Dad is administering her dapto. We'll be filling out paperwork and shoving off sometime within the next 60 minutes.


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waiting for Godot (or at least a new PICC line)

We're up on the tenth floor of the Tower Building at Fairfax Hospital. Mom is berthed in a bed, awaiting the PICC line "IV access" team. We were told she had two patients in front of her; that was at 3:30, and these procedures take around an hour, give or take a few minutes. It's never safe to assume anything about the pace or timeliness of hospital service, but if all goes well, the team will be seeing Mom around 5:30PM.

Our visit to radiology earlier today included a talk with Dr. Tonnesen. I asked him about the MRI results and what they might mean. His answer was a bit disturbing: he said that, based on the MRIs done by the hospital, there's evidence that some of Mom's tumor is responding to the therapy, but that there's possible regrowth of the tumor in other areas, about which little can be done. The reason for the qualifier "possible" is that the doctors don't know whether the apparent regrowth is a recent occurrence or something that dates back to some long-ago period between MRI sessions. Perhaps the recent MRI is showing an old growth that has, in reality, been stopped by the current treatment.

More disturbing was the doctor's contention that how Mom is doing externally is more important to him than what is going on internally. He saw her today and said she looked a lot better than last time. "I see this as a good thing," he said. For him, it's more important to focus on how Mom presents clinically than on what might be going on, tumor-wise, inside her head. I'm still having trouble wrapping my mind around what the doc was trying to say, and right now, I wish I had recorded the conversation so I could replay it and digest it. To me, it would seem that any outward improvement not accompanied by internal improvement should be considered superficial at best, but perhaps the doctor's point is that, since the treatment for GBM is palliative and not curative (there is no cure), we should view any clinical improvement positively.

Dad asked Dr. Tonnesen for his overall opinion on how Mom is doing. Dr. Tonnesen gave us a sympathetic look and told us that he can't jump for joy at what he's been seeing. "She isn't bouncing back," he observed, reciting the litany of problems Mom has encountered ever since she became a patient on April 16. Since we already knew this, the news wasn't particularly surprising. Maybe Dad just wanted to hear something, anything, that might be positive about this situation. Can't say as I blame him.

So that's where we are: waiting for the PICC team. We ought to be back home this evening.


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our ER adventure in a nutshell

A rough chronology of the follies that began last night:

10:30PM: Mom has 5-10 minutes alone in her bedroom and manages to tug out her PICC line. The worry now is that part of the PICC line may have broken off and remained somewhere in her thoracic (chest) region. We learn later that another possible risk is pulmonary embolism, should a tiny fragment of the PICC line float into a blood vessel in one of the lungs.

11:27PM: We drive like mad to the Fairfax Hospital ER, having long ago decided to avoid the Mount Vernon ER if at all possible.

A long wait at the ER ensues. Mom seems fine, aside from a bit of pain in her de-PICCed arm.

Around 2 or 2:30AM: Mom is X-rayed.

2:45AM: The doc talks with us, but has little more to say than that the X-ray image doesn't definitively show, one way or another, whether any PICC fragments remain inside Mom's chest or arm. I ask whether other, better scanning methods could yield results, and the doc says a CT scan would do it. Dad and I are left with the creepy impression that the doc was seriously contemplating sending Mom home despite not knowing for sure that her chest and arm were clear. It was only after discussion of the CT scan option that a CT scan was ordered.

3:15AM: Mom is wheeled off for a CT scan.

3:45AM: Mom is finally given a berth in the ER-- Room 18. It has taken us four hours to get a room. As always, MRSA protocols are in effect. Dad and I glove and gown up.

4:10AM: A male nurse/tech comes into the room to give us good news: the CT scan shows nothing. Mom is safe, and we now know she has miraculously pulled off a professional-grade PICC line removal.

4:45AM: After another long wait, we're told we can go. After Dad processes Mom out and I fetch the van, we get home by 5:30AM.

Many thanks to David and Sean for showing up and hanging around as long as they could.

I'm off to get some sleep. At noon, I need to get up, and we need to be on the road back to the hospital at 1PM for radiotherapy. We're also supposed to see Dr. Tonnesen, and what's more, we need to have Mom scheduled for PICC line re-installation. She has another week to go for her daptomycin regimen, for which the PICC is essential.


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off to the ER

Mom just pulled out her PICC line. We're taking her to the ER. She doesn't seem to be suffering any ill effects, but she needs to be looked at.


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non-invasive brain surgery

A link at InstaPundit brought me to an article about using a combination of ultrasound and MRI technology to perform brain surgery. It'd be nice if this technique could be used on the currently-unreachable parts of Mom's tumor.

The ultrasound beams are focused on a specific point in the brain--the exact location depends on the condition being treated--that absorbs the energy and converts it to heat. This raises the temperature to about 130 degrees Fahrenheit and kills the cells in a region approximately 10 cubic millimeters in volume. The entire system is integrated with a magnetic resonance scanner, which allows neurosurgeons to make sure they target the correct piece of brain tissue. "Thermal images acquired in real time during the treatment allow the surgeon to see where and to what extent the rise in temperature is achieved," says Zadicario.

Learning about these soon-to-arrive technological breakthroughs is a bit like being on a departing train and realizing you've left your family at the station. Mom's cancer chugs ever forward, taking us inexorably away from new developments. Will this tech be available to help her within a year or so?

NB: Be sure to read the second page of the article, which discusses the disadvantages of this new treatment method.


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déception

The French word déception means "disappointment," not "deception."* Today's disappointment arose from not seeing Dr. Tonnesen, the radiation oncologist, even though he had said he wanted to speak with us "on Wednesday." As it turned out, he wasn't even in the radiation oncology department. We suspect the good doctor may have meant "Thursday" when he said "Wednesday," since Thursday is when he's usually in his office at the hospital (like many of Mom's doctors, Dr. Tonnesen shuttles among several different offices). But we don't know that for sure. Maybe he did mean "Wednesday."

If I'm not mistaken, Dad's been told that we'll see the doctor tomorrow. I admit I'm a bit stressed and annoyed by this delay, but I'm hoping that the enforced wait will be worth it, and that we'll know a lot more tomorrow. Dad says we'll also be picking up our copy of the MRI files tomorrow afternoon. Good.

Despite being stood up, though, we did end up spending time with another staffer: a friendly social worker named Corinne. We talked with her about several things, including some of the practical issues related to Mom's care, such as the eventual need for a way to lift Mom bodily into and out of the minivan. She told us to stick with the advice we'd gotten from the occupational therapist.

Corinne also asked us about how we were all doing, emotionally speaking, and what sort of support systems we had in place, so we told her about the support we get from each other, from our church, from Mom's Korean friends and associates, and from other friends and ex-coworkers. We also talked a bit about spirituality, which led to a discussion of Buddhism and Catholicism. I ended up saying too much on the subject, I think. In any event, it was a pleasure meeting Corinne today. Meanwhile, here's hoping we do get to see Dr. Tonnesen tomorrow.

ADDENDUM: Pastor Jeri dropped by, but Mom and Dad were both napping, so the pastor and I talked for almost an hour (here, too, I think I talked her ear off). This reminds me: I need to work on my hospitality. Poor Pastor Jeri didn't even receive a glass of water from me today.

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*The French word for "deception" is tromperie, from the verb tromper, to fool, dupe, or deceive.


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today's agenda

As far as I know, we've got nothing scheduled for this morning. It's a little after 11AM, and Mom's still in bed. Dad has grown more confident about and proficient at helping Mom with her morning ablutions, so he's letting her sleep in a bit. As far as I'm concerned, we're doing OK if Mom starts eating lunch by 12:30, just before our 1PM departure.

Today, we're not only taking Mom to therapy: we're also visiting with Dr. Tonnesen, just down the hall from the Trilogy radiotherapy machine (don't ask me why it's named Trilogy; I have no clue). The doctor will, I hope, provide us with a thorough, spin-free explanation of Mom's latest MRI results. As I wrote before, I'm worried about the possibility that part of the tumor is showing renewed vigor. More than that, I won't say, because we as a family know almost nothing in detail.

After we get Mom back home, Pastor Jeri will be swinging by for a visit. We're happy when this happens; Pastor Jeri takes good care of Mom during their time together.

Beyond that... I'm not sure what's on the agenda for this evening. Dinner ought to be easy: we've got a ton of tasty leftovers. Perhaps an "international" meal...?


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night magic

I hung up after talking with my buddy Mike this evening, sat alone and quiet for a few minutes, then tromped back upstairs.

Sean, who had initially swung by around 6:30 or so (is that right, Sean?), had left. Like my other brother, David, Sean is perpetually busy. Both brothers work grueling 6- and 7-day weeks, and they're both pretty tired most of the time. I imagine Sean had something more to do this evening, or maybe he just needed some rest. He had sat with Mom tonight, and had also helped me with dinner prep and pre-dinner dishwashing, this on top of his usual load of gigs, lessons, practice sessions, and group rehearsals.

There were dishes to wash after dinner. When I came back upstairs, it was around 9:30PM, and I saw Mom and Dad sitting together on the couch. Dad had made good on his promise to start reading aloud the messages in Mom's many, many get-well cards. As I washed, I looked over the counter at my parents.

Mom seemed to be listening intently, nodding at some of what Dad was reading. Occasionally, Dad would encounter a card written in Korean, and he'd ask Mom who had written the message. Mom would make a show of staring hard at the card, as if she were trying to decipher the writing. I didn't often hear her say any names, but I noticed, at those moments, that she would laugh, perhaps embarrassed at her current inarticulateness. Dad would laugh with her; far from being cruel, he was simply appreciating the sound of her laughter.

It was one of the rare times that I have seen Mom and Dad, as a couple, simply sitting and enjoying themselves so openly. Throughout my childhood, Mom would be the one who, in true Korean fashion, would brush aside Dad's expressions of affection, even though she privately appreciated each gesture. This evening, though, there was no such theater. Dad and Mom laughed, in tune with each other, enjoying-- and creating-- uncomplicated streamers and bubbles of mirth. Dad had, at long last, caught Mom after years of chasing her.

Seeing Mom in this simpler, stripped-down state has been educational. She has literally had part of her mind shorn away. In many ways, this is a terrible thing, but one of the sneakier blessings to arise from all this has been Mom's enjoyment-- at least for now-- of a higher level of inner peace than she has experienced since, well, forever. The agitation, the worry, the stress... they're all part of a cortex that has been stripped off and cast aside. What remains is, to my eyes, a Mom who feels more free to enjoy herself. Oh, she's still self-conscious about wearing that helmet and about moving around so feebly, but her response to these situations is embarrassed laughter, not snappishness.

The rest of us, tangled in a complex skein of emotions and thoughts ranging from the noble to the petty, don't often enjoy such peace. I'm not saying Mom is lucky to be where she is; the implications of such a thought are too sickening to countenance. I guess what I'm saying is that most of us spend time stressing out over problems of our own creation-- problems caused by all the thrashing, wormy components of the human ego.

One way to begin the process of un-knotting that tangle is to calm down, look in the mirror, stop blaming others, and move forward as constructively as possible. Another way is, as I witnessed tonight, to sit side by side on the living room couch, just talking, just enjoying each other's presence. What I saw happening between Mom and Dad wasn't reducible to the effect of a tumor and four surgeries. It was deeper than that.

What I saw tonight was magic, and the reagents that informed the spell were the most ordinary in the world: humor, presence, attentiveness, communication, and love. And the greatest of these is love.


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Friday visit?

We heard from Pastor Kim-- our MIA-- that he'll be over on Friday at noon. This won't give him much time: we have to leave at 1PM to take Mom to her treatment.

But maybe a few minutes with Mom will be time enough. We're looking forward to meeting the pastor. From what Dad says, he sounds like a decent fellow.


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more pics from France 2007

Dominique sent me some more photos from my Christmas 2007 visit to France. Here are two. The first shows me with Dominique's youngest son, Timothe. The second shows me with all the kids-- Joséphine, Augustin, Héloïse, and Timothé... all somehow lined up in descending order of age. Poor Augustin was sick at the time; I remember introducing him to the painful ritual of gargling with salt water to help out his sore throat.

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in and out; much French was spoken

The trip to radiotherapy was quick; we arrived at 1:40 for Mom's 2PM appointment and were done by 2, but we lingered a bit: Dad had met a lady whose late husband was French, and who wanted to speak French with me after Dad mentioned that I speak the language. We had a great conversation about her hubby, a World War II vet whose ashes were going to be interred in France. We talked about Mom's and the lady's respective cancers, and even compared travel notes. It's always a plus when I can practice French with someone; I so rarely have the chance to speak it. It's a beautiful language, and I sometimes wish I had plunged more deeply into its study.

We're home now, but Dad went out again to do some shopping errands. It's been a full day for Mom; she could use a quiet afternoon and evening. Right now, my main concern is to persuade her to drink more water: she's been a bit dehydrated over the past 48 hours.

UPDATE: I forgot to mention that we're putting the new ramp to good use. As Mom's legs have gotten weaker, we've found it more convenient to wheel her out to the van and back. We started doing this yesterday, and we did it again today. My thanks, again, to the MVPC and Home Depot folks who labored all day to construct the ramp.


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crowded schedule

By 12:30 today, Mom had already had three visits: (1) her home care nurse, (2) her occupational therapist (who won't be back until early fall), and (3) two Korean Jehovah's Witnesses, who greeted Dad while I was downstairs. Dad initially thought that one of the men-- they both spoke mostly in Korean-- might have been the mysterious Pastor Kim (who was supposed to visit yesterday, but who never showed up). It was only when Dad saw the literature they tried to give Mom that he realized these guys were JWs.

We're about to head for the hospital, so I'll leave off here. For those who have been reading this blog since April 16, but haven't been curious about anything I've written before that time, here is a post I wrote on April 2, two weeks before we found out about Mom's cancer, regarding an encounter I had with a pair of Mormons at my door.


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mixed message

According to Dad, Dr. Tonnesen's office doesn't see much to worry about in Mom's MRI, though they did apparently note shrinkage of the tumor in one area, and a possible reinvigoration of the tumor in another. To me, that's cause for alarm: shrinkage and growth do not "cancel each other out" when it comes to cancer. Any growth is bad.

We're supposed to learn more tomorrow. In the meantime, we're still left with the mystery of Mom's behavioral changes, even if she does appear more reactive and communicative this morning.


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...and we're back

We've returned from our trip to the Fairfax MRI Center. We won't know anything until tomorrow morning or afternoon. Strangely enough, Mom seemed more animated and talkative when she exited the MRI (Dad says she also moved around a lot during the imaging process).

Mom just enjoyed a McDonald's hot fudge sundae provided by my brother David, who fed us all (thanks, big boy), and now Dad is working on administering Mom's daptomycin through her PICC line while David looks on and I type this entry. Here's hoping Mom sleeps well tonight.


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...and we're off

I'm not sure what time we'll be home this evening, but it'll probably be late. We're on our way to Fairfax MRI Center at 7:30. If we find out anything important while at the center, I'll be sure to report the findings ASAP. Keep your fingers crossed.


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back but going out again

Well, we waited until 1PM, but Pastor Kim (not to be confused with my church's Pastor Kim) never showed up. Was he lost? Was he busy? Did he forget that today was his day to visit? We'll never know, I guess, unless he contacts us, which he apparently didn't. I see no message signal on our answering machine.

More important: when Mom and I arrived at the hospital today, the nurses were uneasy about the way Mom currently looks and acts. As I've noted, Mom is weaker and has issues with her balance. She's also manifesting more perseveration than ever in the form of little obsessive behaviors, such as wiping the kitchen counter with her hands, over and over again. She's also nonverbal; along with this, she has, bizarrely, a very good appetite. I had mused earlier that we might be looking at new neurological symptoms, and Dr. Tonnesen, the radiation oncologist, seemed to agree. The nurses had called the doc over to look at Mom before her scheduled radiotherapy, and he was more alarmed than I was at what appears to be too drastic a change for radiotherapy to account for.

So Mom is going to a medical center near the hospital this evening to have an MRI done. The appointment's at 9PM, but we have to be there at 8:30, probably to check in and process paperwork. MRI results will be known either tonight or tomorrow; since we have to take Mom in tomorrow, anyway, the latest we'll know the results is early afternoon. It's possible we'll know something by morning.

Dr. Tonnesen wants to rule out a number of potential problems, from aggressive tumor regrowth to the return of infection and/or edema caused by an assortment of possible factors. If it turns out that Mom does have a new problem in her skull, this will likely mean yet more surgery-- her fifth operation since April 16.

Expect updates as we find out more.


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happy 40th

The Apollo 11 moon landing occurred 40 years ago today. Forty-two days later, I was born. Coincidence?


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a visit and a trip

Dad's got an appointment today, so I'll once again be driving Mom out to the hospital for her radiotherapy. Before we go, however, a Korean pastor whom we don't know is supposed to visit us at noon. Dad won't be here for that; it'll be just Mom and me at home (unless Sean drops by, as he often does). The pastor is coming at noon, which is an awkward time, since Mom usually needs that time to get ready for her 1PM departure. Dad has tried to help Mom get ready in advance, though, so we ought to be all right.

On a different note: Thanks again to all the good folks who gave us food over the past few days. Our fridges are chock-full.


UPDATE, 12:31PM: I'm a bit worried. This pastor still hasn't shown up, and we have to leave at 1PM. I wonder whether he's aware that Mom has an appointment at the hospital. Maybe he's busy; most of the clergy I know are often hard to meet up with because they have to be available to everyone in their flock. It could also be that he's lost: a lot of people have trouble finding our house, even though it's just off Route 1.


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bump in the road

Dad and Mom came home about an hour earlier than expected. Not long after they got home, however, Mom vomited. Somewhat alarmed by the gray color of the vomit, I asked Dad what it might have been, and he said it was probably the soba (gray buckwheat noodles) she'd eaten while at the beach.

Dad and I had noticed a marked improvement in Mom's appetite over the past week, but we're now thinking that Mom might no longer be in touch with her appetite-- the reason she's eating so much is that she may no longer have a clear idea when to stop. If so, that's both good news and bad news. It's good news inasmuch as it means that Mom's episode today might be a simple reaction to eating too much too fast. It's also bad news, however, because we may be looking at a new neurological symptom.

We're planning to speak with both Mom's neurologist and her infectious disease specialist this week. If we can, we hope to set up appointments with them.

Dad notes that Mom was nonverbal while out in Maryland. She's tucked away in bed now-- Dad just took care of her PICC line antibiotic treatment-- and maybe that's for the best.


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my French family

I've known the Ducoulombier family since I first went to France in 1986. Years passed; my French "brother" Dominique got married to his lovely wife Véronique, and they had four children-- Joséphine, Augustin, Héloïse, and Timothé. Dominique recently wrote me a very nice email that updated me on his family's situation, and sent along some photos of the family that also include a shot of his parents Pierre and Jeannette, my French Papa and Maman. Maman is a cancer survivor, so Dominique has an excellent idea of what our family is going through as we endure this crisis with Mom.

But far from dwelling on the specter of my mother's cancer in this post, I'd rather share the images Dominique sent me. Hover your cursor over each image for information.

The last time I saw my French family was in late 2007. Domi's parents live near Nantes, on the west side of France, while Domi and his family are near Colmar in the Alsatian region, close to Strasbourg (France) as well as Germany and Switzerland. A great location, except for the fact that it's all the way on the other side of the country.

Domi and his family moved into their new home last year, I think; I gather that they've pretty much settled into it. I saw the house while it was still under construction in December of 2007; it looked very impressive. I hope one day that his family will take a trip to the US and stay with us for as long as they want. As they know, la porte est toujours ouverte. The door is always open.

I see that Héloïse and I have a lot in common: neither of us likes to be serious when people take pictures of us.


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on gliomas

Pastor Jeri very kindly sent me some links to articles about gliomas, of which Mom's glioblastoma multiforme is one type. I'd like to share those links with you:

1. Scientists find 7 key genes driving tumor growth in type of cancer afflicting Kennedy

2. Research is personal for patient

3. A MediFocus article on glioblastoma.


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and they're off

Mom and Dad just left for Ajumma's beach house on Cove Point. It was a very late start (Dad had hoped to be out of the house by 10:30AM), but it seems that Mom slept until well past 11AM, leaving Dad little choice but to leave late. Forcing Mom awake before she was ready to get up would have been pointless, especially since the purpose of today's jaunt is enjoyment.*

Getting Mom bathed and ready isn't difficult, but it's a task that takes time. I helped a bit today by ironing her day clothes, but Dad did the bulk of the preparation. My only other contribution to the proceedings was to make a quick snack for both parents.

Mom is nearly nonverbal again today, but seems otherwise aware. I'm a bit worried about her balance and the strength of her legs; she seems weak and a little off-kilter. She's also worsening in terms of her obsessive tendencies, and requires more prodding to perform basic ablutions like hand-washing.

The other day, Dad ascribed this change to Mom's radiotherapy; she's gone through a total of 9 days of it, if you count the first two days before all the MRSA problems started. This puts her close to the three-week mark, which is when the docs had said Mom would start showing signs of apparent worsening. We were assured that this is how it normally goes for therapy: the patient is hit hard by the various treatments, weakens, then regains strength during the recovery period and after the end of all major treatment.

I hope Mom talks with Ajumma today, but it wouldn't surprise me to learn that she'll have spent the day in relative silence, contemplating her friend and the big water.

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*A lot of people who go on vacation seem unable to figure this out, forcing themselves to keep to a grueling vacation schedule because they've convinced themselves that quantity equals quality, i.e., you have to see and do everything to make a trip worthwhile. Almost all of these people are adults; they really should know better.


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