Saturday, August 8, 2009

on to budae

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

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


la tondeuse et moi

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

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

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


Friday, August 7, 2009

the walks

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

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

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

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

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

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


Dad and Mom at Fort Hunt Park

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more on mortality

Pastor Jeri sent me the following email:

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

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

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

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

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


...and we're off

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

We'll see how it goes today.


yesterday's dinner

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

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

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

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

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

Tasted good, though.


Thursday, August 6, 2009


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

Thanks, Linda!


waiting for Mom and Dad in the hospital parking deck

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Mom and I talk about death

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

One part of the exchange went something like this:

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

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

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

MOM: Some kind of cancer problem.

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

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

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

MOM: Really?

KEVIN: No; I want to be cremated.

MOM (nodding): Oh.

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

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

KEVIN: You don't want to be buried?

MOM: No.

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

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

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

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


Wednesday, August 5, 2009

thank you, ladies

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

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

Thanks again!


Mom's quirks

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

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

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

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

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


almost loqacious

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

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

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


Tuesday, August 4, 2009

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.


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.



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.

*"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.



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.


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.


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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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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Monday, August 3, 2009

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.



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.


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.



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.


Sunday, August 2, 2009

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.


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.


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.


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!