Mom is quite adamant that she won't be going to the M.D. Anderson Cancer Center in Houston. No one knows why, though we have our guesses: (1) due to continued cognitive impairment, she doesn't fully comprehend her situation, or (2) she understands just fine, but is either in denial or is willfully refusing to consider certain treatment routes.
Personally, I'm betting on (1). Mom's current behavior is remarkably similar to her behavior on April 16, the day we took her to the hospital. On that morning, I witnessed some frightening cognitive changes in Mom, including aphasia and problems with her memory. She was almost entirely passive, sitting in the living room and watching Korean TV. Alarmed at her sudden change and fearful that Mom had suffered a stroke, three of us four guys tried to persuade her off the couch to go to the emergency room. She shook her head and refused with a simple, almost childish, "No. No." When we asked her why, her response was again, "No." Eventually, David lifted Mom to her feet and she stopped resisting. I like to think she was rational enough to realize that she needed help, and that further resistance would have been useless.
Right now, despite marked improvement in her cognitive ability, Mom sits in front of the TV and resists the notion of going to Houston for evaluation. If it were not for my aunt, Mom might not be talking at all, but my aunt never leaves Mom's side, constantly engaging her in conversation in both Korean and English (as is common with long-time Korean residents of their generation). I encourage this. I encourage whatever it takes to keep Mom's mind working. My aunt says Mom's responses continue to be fairly short; I assume that Mom isn't carrying her side of the conversation the way she might have before all this happened.
My brother David is itching to get Mom out of the house. We'd all love to drive her out somewhere beautiful, let her take in some real scenery, but right now, there's so much going on: various appointments (including the hoped-for trip down to Houston), the imminent start of her treatment regimen, and the many callers and visitors who drop off food and offer Mom words of love and encouragement. In interacting with these visitors, Mom often gives them the impression that everything is now fine after the surgery, but the family knows this isn't the case. Why is Mom acting this way? Are we witnessing incomprehension or conscious denial? I'm no psychiatrist; it's hard for me to tell.
I think Mom ought to at least go to Houston and get the consult, even if she ultimately opts to remain in northern Virginia. But Dad seems to think we might try a bit of judo with Mom, letting her have her way right now, keeping her local until a later arrangement can be made to get her to M.D. Anderson.
More later on how all this turns out.
ADDENDUM: Many thanks to our family friends, Dale Molina and Pat Conforti, for visiting. I know it's a long drive for them both. Their visit (and their gifts) made Mom very happy.
Saturday, May 2, 2009
Mom is quite adamant that she won't be going to the M.D. Anderson Cancer Center in Houston. No one knows why, though we have our guesses: (1) due to continued cognitive impairment, she doesn't fully comprehend her situation, or (2) she understands just fine, but is either in denial or is willfully refusing to consider certain treatment routes.
Here's a somewhat jumbled list of avenues we're exploring. I say "jumbled" because the list is a mishmash of three things: (1) doctors we want to see, (2) places we want to take Mom, and (3) treatment options that might yield fruitful results. Because these things-- who, where, and what-- are all interrelated, separating them into neat categories is somewhat difficult to do.
What we've looked into thus far:
1. Fairfax Hospital: standard treatment with radiotherapy and chemotherapy. (Consultation with the radiotherapist, Dr. Tonnesen, on May 11.) This is our default path.
2. M.D. Anderson Cancer Center (Houston): possibly for standard treatment and/or clinical trials. Consultation on May 8; no doctor's name yet, but the appointment's been made. Mom and Dad will be flying down to Texas on the 7th, rejoining my aunt and my cousin at their house. The drive from my aunt's place in Conroe to downtown Houston is a little over 50 miles, or anywhere from 60 to 90 minutes, depending on traffic. The appointment's at 8AM. Mom will basically be seeing the docs and flying back to Virginia soon afterward; we haven't officially decided to ship her to Texas for the long haul.
3. Mary Crowley Research Center, affiliated with Baylor University, Dallas, TX: fat particle nanotech delivery system for tumor-suppressant gene. (Not possible at the moment, because Mom needs to go through the standard regimen first before she can enter the clinical trial.) We plan to contact-- and remain in touch with-- the docs who've developed the technique and are managing the trials.
4. Keck School of Medicine, USC, Dr. Florence Hofman: DMC treatment. (We still need to find experts who know about this drug. The chemotherapist who will likely be treating Mom at Fairfax Hospital, Dr. Meister, was unfamiliar with DMC.)
5. NIH/NCI (DC): consultation on May 6 with Dr. Harold Fine. Dr. Fine's name was given to us by Dr. Meister during that recent consult.
6. University of Washington School of Medicine: Avastin treatment. We're actually hoping to speak with Dr. Fine (mentioned just above) about Avastin, but we'll be in touch with U. Washington as well.
7. Johns Hopkins University: consultation with a certain Dr. Levy (no date fixed).
One thing we've discovered about clinical trials is that, because Mom hasn't even begun standard treatment yet (she's still in the post-surgical healing phase), she isn't eligible for most of them.
We've been discussing the pros and cons of leaving Mom here in northern Virginia, or having her sent out of state for treatment. The obvious bottom line is that Mom should go wherever the treatment is best, but this is complicated by at least two problems.
First, because of the aggressiveness of this sort of tumor, we have very little time in which to make what is literally a fateful decision about our primary course of action. Mom is supposed to start her therapeutic regime within about two or three weeks of debulking surgery, which means we have to rush through a process that, by all rights, should go slowly and deliberately. We probably won't know, even after multiple consultations with various docs at different institutions, whether we'll have picked the right place and the right treatment regimen for Mom.
Second, we're talking about a disease that is generally fatal within a year. As I mentioned previously, survival rates plunge dramatically when we pass the one-year mark. In some cases, patients decline and die within a matter of months even after initial debulking surgery and the start of the therapeutic regimen (see the comments to this post; they manage to be both discouraging and frightening). The high probability of an unhappy ending to all this means that we must seriously consider quality-of-life issues. With Mom out of state, she'll be away from friends and family, especially if "out of state" means "away from northern Virginia or Houston." Even if Mom is in Houston with our relatives, she'll be in a fairly foreign environment, adjusting to new household routines, facing long daily commutes to the medical center, etc. These factors have practical implications. How much of Mom's time should be spent commuting and away from home, if her time is short? Will such an arrangement make her happy?
I'm all for placing Mom wherever the absolute best treatment is available. But if this means that Mom will be out of state, then Dad is most likely going to be the one to accompany her, and I'll be at home, holding the fort. My brothers will also have to remain in Virginia because of their own commitments. We'll visit Mom as often as possible, but we can't pretend that we'll be able to fly down to, say, Texas every single day, all while holding jobs in Virginia. Dad, being retired, can accompany Mom, and I can help him handle paperwork from Virginia-- mortgage, assorted bills, etc. Such an arrangement would be awkward, but it'd also be workable. Or, we could do things differently: I could head down to Texas with Mom instead of Dad, leaving Dad to mind the house... but I can't imagine Dad tolerating that arrangement. He'd want to be by Mom's side.
As you see, we have a lot to consider, and little time in which to do justice to all the alternatives out there. Facing a loved one's aggressive cancer requires the family to think in terms of both immediate tactics and long-term, overarching strategy-- to be platoon leaders and generals, all rolled into a single package. If we stick with the martial metaphor, this also means being decisive, and making decisions with as much sang-froid as possible. Heaven forbid we should make the wrong choices in the coming days. So much rides on the immediate future.
Speaking of days: May 4 is Mom's birthday. She'll be 66.
Friday, May 1, 2009
Dad did an incredible amount of phone calling yesterday. It was his way of aggressively pursuing multiple angles in our search for a better treatment route than than the standard therapy which Mom is slated to undergo. Dad is also the guy handling incoming calls from Mom's friends, checking our appointment calendar and making sure that friendly visits don't get crammed together into a single day.
My brother David has been the main Internet research guy, finding articles on new techniques and passing that info along to the rest of us. He's also been great about visiting the house during his free time, sacrificing his mountain biking and other aspects of his social life to spend time with Mom, often hanging out with her and my aunt upstairs.
My brother Sean has provided invaluable emotional support by coming over quite often. This is significant because, for as long as Sean has been a professional musician (for those who don't know: he's a cello teacher and performer), he's been hard to reach by phone and by email, and seeing him has been a rarity. Like David, Sean works seven days a week; both of my brothers often look exhausted. Now, however, Mom gets a larger dose of Sean, and this obviously cheers her up. The fact that he brought over his dog Maqz yesterday (Maqz is still here) is icing on the cake. Maqz definitely serves a therapeutic function; I don't know whether endorphins play any role in staving off brain cancer, but making Mom as happy as possible is a major goal for all of us.
My uncle John's visit and my aunt's continued stay have also been hugely beneficial to Mom. Both relatives have supported Mom with their presence, their humor, and their help around the kitchen: through sheer determination and elbow grease, Uncle John rescued Mom's charred pot (from the morning on April 16 that began with Mom burning the oatmeal and acting strangely, and ended with her in the ICU of Fairfax Hospital, tentatively diagnosed as having a mass in her brain); he also bought food for us (hooray for string cheese!). My aunt, for her part, has been constantly at Mom's side and has done the lion's share of cooking for the entire family; she will remain here until May 5th, the day after Mom's birthday. She also promises to come back; the rumor I'd heard was that she'd be back in a month or so. Uncle John, if I understand correctly, will be back sometime in the latter half of May.
It's good to know we have a family that pulls together in crisis. They all deserve my thanks for everything they've done and will do.
Thursday, April 30, 2009
In our search for alternative treatments for Mom, I found an article off Instapundit about the development of a technique that uses fat droplets as a delivery system for a tumor-suppressant gene. My father called the relevant folks up and discovered that Mom is not currently eligible for the clinical trial because she hasn't started regular treatment yet. There is, apparently, an ethical issue at work here, but I'm not sure exactly what it is. We need to call back and find out whether Mom will be eligible later. Many clinical trials limit the number of participants-- not to restrict the pool from which they're gathering data, but because of funding limits, number of available beds, etc.
Before we can pick a treatment option, we need to know what's out there. The website for the M.D. Anderson Cancer Center at U. of Texas in Houston (where some of my relatives think Mom should go*) has links to clinical trials, as well as excellent explanations for what's involved in such trials-- benefits, risks, what "informed consent" means, etc.
I also found an article through Instapundit for a spanking-new nanotech cancer treatment using fat droplets as a delivery system for a tumor-suppressing gene. The doctor who developed the technique is at Georgetown University Medical (go, Hoyas!), but her clinical trials are being done at Baylor U. in Dallas.
Sending Mom to Texas to weather her therapy is an alternative we're seriously considering. Dr. Meister was good to mention his unfamiliarity with DMC, but the lack of familiarity does make us think we might need to look elsewhere to make sure Mom gets the best, most current treatment. But as mentioned before, we have to balance this with the idea that clinical trials, while representing the cutting edge, don't necessarily guarantee the best treatment: they can go horribly wrong, too, and that might mean wasting months on a fruitless, bootless effort. As terrible as it is to say, there's a gamble going on here.
Either today or whenever we can get everybody together, we'll have to sit down as a family and discuss our options. Before doing this, however, we need to find out more about what options are out there. If you know of anything, please feel free to contribute. (NB: Our pastor was just over with his wife, and he apparently offered to look into the Cleveland Clinic-- the one in Cleveland, not the one in Florida.)
UPDATE: Many thanks to Pastor Kim and his wife for stopping by this morning, and to Donna Brandes (Mom's friend and former coworker) for visiting in the early afternoon. Also, a big thank-you to my friend and former French teacher, Eleanor Landgrabe, for calling and offering some possible leads for Mom's treatment.
Wednesday, April 29, 2009
This post is a write-up of the meeting we had today with Dr. Meister; to make things easier on myself, I took along my voice recorder and we got about 30 minutes of conversation with him. The exchange was very informative; I had written up a series of questions, which I'll list for you below, with the doc's answers.
1. What is Mom's Karnofsky Performance Score? I ask because of this Wikipedia reference, which alludes to the importance of the KPS as one factor in determining her prognosis.
The KPS is a sort of "eyeballed" measurement of a person's functionality, i.e., their ability to get through the day with X amount of help. The lowest score signifies death; a 100 signifies perfect health and the lack of a need for any caretakers or assistants. Dr. Meister rated Mom fairly high, putting her around a 90. Having watched Mom's coordination issues more closely, and over more time, I would have rated her somewhere around a 70, give or take. Today, however, Mom's coordination does seem greatly improved. Her movements are more controlled and evince less looseness or flailing; she was even able to put on her own makeup this morning, with no assistance. Perhaps a 90 is justified, though I wouldn't quite put Mom behind the wheel of a car yet, nor would I ask her to cook one of her usual multi-course meals.
2. Can my brother Sean bring his dog Maqz over to see Mom even during her chemo- and radiotherapy? She may be immunodepressed during this time, so I'm wondering whether we have to worry about the dog bringing in allergens, pathogens, etc.
The doctor gave the all-clear on having Maqz over, though he joked that-- like me-- he's not a fan of chihuahuas, instead preferring retrievers. I prefer "woof" dogs to "yap" dogs myself, but the point here is that Maqz will serve an important therapeutic function for Mom. The more we can reengage her with her normal life, the better.
3. Are we supposed to be starting Mom on her Temodar (chemotherapy regimen) now? How will the Temodar treatment schedule dovetail with the radiation treatment schedule? What effects can we anticipate as Mom embarks on these treatments?
The doctor said that Mom should NOT start on Temodar now; she needs to wait until we've had the talk with the radiology doc, Dr. Tonnesen. The two treatments must start on the same day. This promises to be brutal on several levels: the physical effect of the treatments on Mom (possible nausea and vomiting, hair loss, myelosuppression), the time spent going to and from the hospital every day (at least for the first few weeks of treatment), etc.
4. What about the pathology report?
Dr. Meister gave us the pathology report, and Mom has been diagnosed with a stage 4 glioma, glioblastoma multiforme. Mom herself hasn't seemed to register the import of this announcement, but I felt it keenly today. It confirms the worst, and it means that, unless Mom is one of the very, very rare cases to break the curve, we have about a year more with her, possibly two if we're lucky. The UCLA study I linked to earlier shows the steep drop-off in patient survival rates after the one-year mark. It's like a cliff, and this is very depressing news.
But we now have an idea what the shape of the battle is, what we're fighting, how long we have to take action, etc. I told Dad that we should shoot for the goal of putting Mom in among that golden 4% of patients who survive longer than five years. This is no time to give up, but at the same time, we have to start thinking about the probable outcome of this fight. Graceful surrender may be the only option in the end, because nature can be very persuasive when she wants to be. But there's no need to surrender yet.
Which leads me to...
5. What about the alternative treatment options my brother David has found out about, such as Avastin and DMC?
Dr. Meister isn't familiar with DMC, which means we need to talk right now to someone who is, and to see whether Mom can be hooked up with a clinical trial. The doctor is, however, positive about Avastin; he gave us the contact information for a professional at NIH (Howard Fine; we were advised to try to reach his research nurse first) with whom we can discuss Avastin treatment in the context of a clinical trial. The advantage here is that Avastin is further along in the FDA approval process than DMC is, and NIH isn't that far away, so we wouldn't have to be flying Mom out to UCLA or to some place in Germany for her treatment. Dr. Meister did say, however, that Avastin is more of a "second-line" treatment, i.e, not something a patient would receive right off the bat. He also noted that he wants to remain in the loop about whatever we decide to do. That goes without saying.
The doctor also noted something very important: if we want Mom to be part of a clinical trial, then we have to work out the arrangement for that immediately, before she starts her regularly scheduled treatment. As I suspected, there is the question of how different treatments might interact with each other, and we obviously would be doing Mom a disservice if we signed her up willy-nilly for everything that's out there. The down-side is that, because we have to pick and choose treatments, we will need to choose wisely. Precisely because Mom can't be signed up for every sort of treatment, there's a chance that we might choose one treatment, only to learn about an even better one later.
Mom's appointment with Dr. Tonnesen, the radiology guy, is on May 11. We have until then to see about signing Mom up for a clinical trial. At this point, we need to know more about the feasibility of going the DMC route before we try the Avastin route. If DMC begins to look implausible, then we'll probably have to move decisively toward Avastin. Time is of the essence: Mom's tumor was debulked by over 90% thanks to surgery (one article says that surgery usually reduces such tumors from an average of 10^11 cells to 10^9 cells, which is a 99% reduction), but delays in treatment due to our indecisiveness can lead to quick recurrence. The next few days will therefore see us doing some furious research-- something my brother David's been good at-- and making a lot of calls, which seems to be Dad's chosen role.
UPDATE: Dr. Meister's remark re: DMC: "I would not add that to standard therapy because it has not gone through the approval process. I think it would still be considered experimental."
6. What's the difference between a tumor and a cancer?
I asked Dr. Meister about this, and his answer was that the two terms are basically synonymous when talking about a mass with malignant tendencies. (Later on, I may review the audio and quote him more accurately.) There are, however, tumors that are not labeled as cancerous because they are benign.
7. Whom can we speak with about the psychological dimension of all this-- Mom's apparent denial that any problem still exists, etc.?
Dr. Meister gave us contact information for some sort of "Life with Cancer" group, which we'll be looking into. I'm torn between two equally powerful feelings right now: extreme worry that Mom hasn't grasped the gravity of her situation, and a sort of poignant relief that Mom may be oblivious to what is going on. I feel she needs to know what lies ahead, including the probable eventual outcome of all this, but I'm worried about whether this will mean piercing some bubble of denial she may have built around herself, and thereby plunging her into despair as she contemplates her own fate. Denying her the information she needs is unethical, but putting her into a deep depression isn't all that palatable an option, either. I can only hope that my mom is still as mentally tough as she's always been. In the end, we're going to have to talk with her as gently, openly, and understandably as possible.
Those who've begun reading this blog only recently are probably here because they've been told that this is Update Central-- this is where the latest information on my mother's health and treatment can be found. And that's proper: I myself have been encouraging people to follow the blog for updates, because the blizzard of emails during the first week of this crisis made it difficult for me to respond to everyone in a timely manner. Many of those emails contained essentially the same questions and remarks-- another reason for me to use the blog as a podium instead of endlessly repeating myself in individual emails.
I also felt that the blog format, which already resembles a diary without actually being one, seemed a bit more human than a form letter beginning with a sterile "Dear Sir or Madam." Journal entries strike me as more personal, less stiff; I can address you as "Dear Reader" without knowing who you are, and you can see yourself as having been invited into our family's story, wherever it leads us.
But I can't invite you too far inside, as you surely know. Mom has taken only the first few steps on her very own via dolorosa, and as was true for that ancient path of suffering, indications are that this journey will not end well, either for Mom or for those who love her.
Because Mom's suffering will take its toll both on her and on us, there is much about this story that I won't reveal here. For that reason, this blog can't be thought of as a journal in the truest sense, for it will never be an expression of our deepest, most private thoughts. At best, all I can promise you, Dear Reader, is a series of highlights, not the internal reality. Those among you who have undergone similar trials will have some idea what all this means, what its stages are, what it's like for hope to soar and plunge. Others will simply have to guess. I will do my best to make guessing easy, to open the door a little way, but beyond that, I will have to ask your forgiveness if I gloss over certain matters for the sake of our privacy and Mom's dignity. I recently expressed my dilemma to a friend this way:
My instinct is simultaneously to curl up in a ball and remove myself from all human interaction, and to write about every little detail in an effort to blow off steam. Obviously, I can do neither.
I hope you understand where I'm coming from. I ask your pardon in advance; readers are still free to write me, but as I think I've mentioned elsewhere, please be sure to read the blog entries from April 16 onward before asking questions that may already have been answered.
Tuesday, April 28, 2009
Mom's May 14 appointment with Dr. Meister, the doctor involved with her chemotherapy (and the same gentleman who delivered the grim prognosis), has been moved forward to tomorrow, April 29, at noon. I assume Dr. Meister will be talking about Mom's Temodar regimen; we also plan to ask him questions about other treatment options (David found yet another possibility for Mom), and about whether Sean can bring his dog Maqz (yes, you read that spelling right) to see Mom, given how much she loves that dog. Personally, I wonder how often Maqz will be able to visit: once Mom is immunodepressed by the Temodar, there's a chance that Maqz's presence might be harmful to her. I'm hoping the doctors can allay my fears about this.
We also need a clearer picture of how, exactly, the Temodar treatment is supposed to be scheduled in tandem with the radiotherapy; the latter won't start until after our May 11 talk with Dr. Tonnesen ("TAH-nuh-sen"), the radiology expert who works with Dr. Meister.
We're all hoping that Dr. Meister will have the long-awaited pathology report so that we can finally face the question of what grade the glioma is. We've already been informed, several times, that the tumor is aggressive; on the four-point scale for gliomas, this makes it either a 3 or a 4. If a 4, this puts the prognosis for Mom at around 1-2 years' survival, per the statistical average for people with such a tumor. Only 4% of patients with grade 4 gliomas (also known as glioblastoma multiforme; see here) survive beyond 5 years after the initial diagnosis and "debulking" surgery.* As Dr. Meister had told me, "She will never be cancer-free."
Now, the above quote came during the same conversation in which my aunt had asked whether Mom could be said to have cancer. You'll recall that this is where the whole "cancer versus tumor" confusion arose. Dr. Meister had answered my aunt by saying, "She has a tumor," which could have been either a polite evasion (is that ethical?) or a technical clarification. If the latter, why use the phrase "cancer-free"? I'll be asking Dr. Meister about this during the consultation tomorrow.
I plan to bring along a voice recorder; these docs have made it clear that they don't like taking the time to email people with detailed information, and I certainly won't be able to take notes on paper fast enough to assimilate what I anticipate to be a blizzard of information. The best solution, then, is the voice recorder. We can review it afterward as a family.
I'm hoping that the session will be informative and productive, and I'm sure I'll have more updates after we're done.
SIDE NOTE: Our thanks to the people who have called us (or tried to call us). Mom spoke with Lorraine Swerdloff, a friend from Mom's NALC job; she also spoke with Mrs. Walters of the Washington Korean Women's Society (WKWS, for whom I emceed this past Christmas). Thanks, as well, to Mom's good friend Cheong Burns for delivering flowers and a card, and to WKWS for delivering their gift of flowers as well. Along with all this, we wish to float a humble thank-you to my brother David's company, Hager Sharp, which has offered to treat our family to a dinner-- a very kind gesture, indeed.
My brothers were both over tonight, taking time out of their busy schedules to sit with Mom and my aunt. Thanks, guys, for doing that.
*The difference between the terms "grade" and "stage," when applied to tumors/cancers, is that "grade" refers more to a species of tumor, classified not merely by type but also by level of aggressiveness. "Stage," on the other hand, is a measurement of a given cancer's progress, e.g., stage IV ovarian cancer. Such cancers are usually assigned an earlier stage number, and this number increases over time. Tumors referred to by grades, however, normally maintain the same grade, though this may change over time.
ADDENDUM: Another source, this time from UCLA, on GBM (glioblastoma multiforme) can be found here.
Mom will be going through a combined regimen of chemotherapy and radiotherapy. The latter involves the use of targeted radiation; the former will involve a drug that goes by the brand name Temodar. The visible side effects of this drug include nausea and vomiting; one major, but less visible, side effect is myelosuppression, which refers to the lowered capacity to produce red blood cells, white blood cells, and platelets. You'll remember from biology class that red cells are associated with things like oxygen transmission/distribution throughout the body, white cells are associated with the fighting of infections, and platelets are associated with the blood's ability to clot.
For comprehensive information on Temodar-- its properties, how dosages are calculated, its side effects, etc.-- see this article, which goes on for several pages. Plenty of Temodar-related info is out there in cyberspace.
Monday, April 27, 2009
I guess this is a great time to be doing what I'm doing, which amounts to little more than hunkering down. Traveling overseas seems to be a bad idea, what with the current (and highly irrational) swine flu scare going on.* Being in Korea right now might be nice in terms of job security (the perennial English craze ensures employment), but Korea, too, is suffering from the global economic downturn.** Mom still has balance and coordination issues, which means we need to be watching her to make sure she's OK, which in turn means that I am-- we are-- right where we should be.
Just as she was before the crisis on April 16, Mom seems to like curling up on her new living room couch and watching Korean TV. My aunt sits with her, and they talk. I don't think Mom feels ready to go out into the world; she's very self-conscious about her surgical scar (no word yet on the date for actual scalp/skull staple removal). She does talk a lot more, and now handles phone calls, which is a very positive development. She is, however, telling some of her interlocutors things that she seems to have pulled from thin air, such as the idea that I'm leaving to continue my walk sometime in May. I heard her say this to a caller just a few minutes ago. I felt a pang, because I think I understand the cognitive issue that prompted Mom to say this.
We've talked about the frontal lobe before, and about its role as a connector of cause and effect. It also plays a role in forming and maintaining inhibitions, from which I deduce that its job has something to do with our understanding of the relationship between "is" and "ought." When the frontal lobe is damaged, the distinctness of these two concepts is blurred. From Mom's perspective, I ought to be returning to the walk and not worrying about her. Her motherly instinct is deeply engraved within her, so this line of thinking stems from the basic impulse to see her children happy and leading fulfilling lives, not "cooped up" with her. But because Mom doesn't neatly separate "is" and "ought," she may be prone to telling people things that ought to be true (from her perspective) but which are not (yet) the case. For Mom, then, expectation morphs into fact: Kevin OUGHT to go and enjoy his walk, therefore he IS restarting the walk in May.
I could be wrong, of course. Taking a few undergrad psych courses*** and reading M. Scott Peck's The Road Less Traveled doesn't make me an expert on anything. But having done the psychology and linguistics courses, and having spent a lot of time in both francophone and coreanophone cultures, I'm used to the idea of trying to figure out where people are at, mentally speaking. I think I have a handle on what's happening with Mom, and I'm constantly testing the boundaries of her mental terrain.
Mom is healing from her brain surgery, so I have no idea how long the cognitive and physical issues will last. The fact that she's becoming a more active participant in conversations is a great sign, but she still has such a long way to go. The diminution of her active vocabulary**** is painful to hear, but that deficit must be seen in light of the great progress she's made since surgery. Perhaps more will come back.
Major therapy for Mom doesn't start for a while-- perhaps a week or so. We have appointments with her therapists on May 11 and 14, and are currently trying to make an appointment with one of her neurosurgeons. Doctor after doctor told us, though, that Mom needs time to heal first before the radiotherapy can begin. For the moment, then, hunkering down seems to be the best thing to do.
*The news services that highlight entire states on their maps are misleading the public into thinking that entire states are infected ("It's hit California!"), when in fact we're talking about dozens or perhaps hundreds of confirmed infections and deaths worldwide. As with SARS, most of the current fears are unfounded, especially when you put those tiny numbers next to actual population figures: 300 million-plus Americans, over 110 million in Mexico, etc.
UPDATE: As of April 26, no one has died outside of Mexico.
**I'm amused when countries with nanny states (think: high taxes, big government, lots of strikes, gummed-up bureaucracies and, more often than not, too much unemployment), after spending so much time bragging about the superiority of their economic policies, suffer the same catastrophes as everyone else. Shouldn't these countries be more resilient? What's the point of bragging if that's not the case? And wherein lies the superiority of those economic systems if such countries turn around and blame their interconnectedness with America for their own crises? Shouldn't a robust, "superior" economy anticipate problems related to interconnectedness with other countries' economies?
South Korea's not really the source of my amusement in this case: its government has its nanny-state aspects (as does our own, unfortunately), but taxes are relatively low and many aspects of Korean society are arguably more capitalistic and free market-oriented than American society. A trip to Namdaemun Market illustrates this quite nicely: American retailers would be astounded to see such free-wheeling capitalism in action.
Then again, South Korean healthcare, more nationalized than our own and not without its faults, makes for an interesting case study. In terms of big government, freedom of speech also remains a somewhat dicey proposition on the peninsula, especially if you try to state publicly that the problem of North Korea's slow massacre of its own people is far more important than a couple of rocky islets whose possession isn't really, seriously in dispute.
***The courses in question: General Psych, Abnormal Psych, Educational Psych, and Second Language Acquisition (where you get doses of Piaget, Skinner, and Chomsky) as part of my certificate program to become a French teacher.
****Active and passive vocabulary are concepts found in language teaching. The former relates to the two primarily productive macroskills (speaking and writing), while the latter relates to the two primarily receptive macroskills (listening and reading). Most people generally develop more passive vocabulary before they develop active vocabulary. As babies, we spend about a year, on average, not saying a single distinct thing. During that time, a storehouse of passive vocabulary is being built up as the people around us fill our brains with often-repetitive auditory stimuli. Active vocabulary appears soon after, but almost always lags behind. We see the difference between these two storehouses even as adults-- for example, when we read authors who rely on 50-cent words, but don't feel adept at using such words properly ourselves. (There are, of course, exceptions to this.)
Sunday, April 26, 2009
Mom seems a lot happier and more comfortable. She sits and eats with my aunt, or watches Korean TV with her. Last night, Mom dozed off together with her sister, reliving their childhood. Dad ended up in a different bed, but if anyone needs a few hours of peace and quiet, it is he.
Mom gets visitors, too. My brothers came by today; Sean arrived earlier, and David just left to go to work. Mom's long-time friend Mrs. Lee, who had visited her yesterday afternoon at the hospital, stopped by again today, her youngest daughter in tow, bringing the requisite raft of Korean food. We've got no worries for dinner tonight, though poor Dad might have to find some non-spicy alternatives to the upcoming meal (Dad loves Korean food, but can't handle spices).
Thanks to the visitors and the mass of cards now sitting atop Mom's recently renovated mantel, one thing Mom is not is alone. Not that she ever was, really, but this fact has been brought home again and again in recent days as visits, food, flowers, cards, and other gifts continue to come her way. Dad has been doing great work fielding calls and trying to schedule visits so that they're staggered across the week. At the same time, he's researching insurance questions and assembling Mom's various medicines. I find myself downstairs, providing updates on the blog and answering a slew of emails and Facebook messages while also sketching out crucial aspects of the family's future. My friends in Korea and France have been very supportive, asking after Mom's condition.
For the moment, then, Mom is doing very well, indeed.
The astute reader will notice that many of my posts will change slightly or radically as I revise them-- catching typos, adding or deleting information, and cleaning up the style. Some of this may stem from pride: I'm an inveterate retroactive proofreader, and I'd like to provide the reader with easily digestible prose. But these corrections are also done out of a sense of necessity: readability facilitates communication, and I'm all about clear communication.
Some people approach their blogs as if they were diaries. By this reasoning, everything written on the blog is sacrosanct, and thus untouchable, once the writer has hit "send" or "publish." I understand and appreciate this; such writers feel it is unscrupulous to alter the past, even if that means letting mistakes lie.
But in my case, the blog is not meant to be a diary in the strict sense; I see myself simply as trying to convey information to readers, doing so as correctly as possible. By my reckoning, I would be remiss if I didn't go back and redress any errors or stylistic flukes.
So: my apologies to people who might be doing a double-take when they come back to a given blog entry an hour later and find that it has changed, but I hope those people will now understand why such changes have occurred and will continue to occur.
When I spoke with Dr. Meister on the day he gave us Mom's prognosis, my aunt asked whether what Mom had could be called cancer. He replied in the negative: "She has a tumor." I'm ashamed to say I don't yet understand the distinction being made here, but I assume that "tumor" applies to a class of malignant or benign growths composed of matter that may or may not be cancerous-- where "cancer" refers, at least in part, to the twisted genetic structure of cells gone wild and no longer able to die (see here; scroll down to the "apoptosis and cancer" section).
However, I noted last night that Mom's discharge papers contained the term "brain cancer."
This may be indicative of a larger dynamic we noticed at the hospital: departments don't always talk to each other, and a lot gets lost in translation as a patient's charts and paperwork are moved from one section of the bureaucracy to another. I don't know what sort of literature there is about family as caregiver, but it became obvious to us, during Mom's stay, that the family definitely plays a role in making sure that each element of the hospital system does what it's supposed to. Blind trust is not an option. While many of the nurses who dealt with Mom were friendly, neat, and efficient (shout-out to Manuel and others), some were, unfortunately, lax and sloppy. We also noticed that various doctors and nurses had wildly different ways of dealing with the MRSA protocol; while most put on gowns and gloves, some would walk in and say loudly, "I'm not touching anything! Just writing an update on the wall chart!" when entering and leaving the room (MRSA is spread by contact; it's not an airborne pathogen). One doctor walked in having taken no precautions at all; when we reminded him of the MRSA protocol, he nodded and said, "I'll wash my hands when I leave."
I don't mind the blasé attitude toward MRSA colonization; there were valid biological reasons for the medical professionals to believe that Mom wasn't in any immediate danger of MRSA infection. But the inconsistency with which the various personnel handled the protocol was disturbing, and the protocol itself, when examined closely, didn't seem to make much sense. For example: we were told by one nurse that, when an object (like a purse) was brought into the room, it was technically contaminated. Despite this fact, the various medical personnel were walking in and out with pieces of equipment (such as barcode scanners to update patient treatment information) that they would often lay on Mom's bed. These same professionals were also carting in pagers and cell phones (see this recent article on cell phones as an epidemiological problem). Were they all somehow immune to MRSA and other pathogens? Suffice it to say that I have my doubts.
All of which is to say that I'm not entirely clear on whether Mom can be said to have cancer, because different sources say different things. Hospital bureaucracies are enormous; information has a tendency to morph in direct proportion to the size and complexity of the bureaucracy. Determining what's true becomes something of a chore in such conditions. It's up to the family, to the people who have a personal stake in caring for the patient, to make sure that everyone is on the ball.
So you can guess what sort of research will be occupying my upcoming week.
ADDENDUM: None of what I said about hospital care is meant in bitterness. I'm deeply thankful to all the people who contributed to Mom's care. My point, however, is basically that people make mistakes; the more people involved in a given endeavor, the more likely it is that mistakes will accumulate and snowball. For this reason, it's up to those closest to the patient to watch out for her.
After that earlier near-disaster (alluded to in this post; see item 5), Dad and my brother Sean began taking notes about what was happening when; Dad remarked that the quality of Mom's care improved visibly when the staff realized notes were being taken. See what I mean? The lesson here is Be visibly vigilant.