I'm done making and serving a huge fried-rice lunch for the parents; a home care nurse is here to change Mom's dressings and look her over.
The big news, though, is that Mom is now strong and mobile enough to get sneaky. Dad was out on an errand, and I was the one both watching over Mom and trying to prep lunch while keeping Mom in my line of sight. I had to dodge downstairs to grab some frozen items for the fried rice, but when I got to the downstairs fridge, I suddenly heard heavy footsteps on the floor above me. My first thought was that Dad had come back, but with mounting alarm I realized that that wasn't the case: I'd heard none of the upstairs doors open or close. I ran upstairs, and discovered that the living room couch was empty: no Mom. Fearing that Mom had taken a tumble, I hurried down the hallway... and found Mom nicely settled into the bathroom, looking for all the world as if this were how things have always been.
Just yesterday, Mom had been walking, but she wouldn't have been capable of standing up on her own. Today, somehow, within the space of barely a minute, she had levered herself to her feet, ambled down the hall, and taken care of her own clothing upon entering the bathroom.
This is nothing short of incredible, but it's also a sign to me that I can no longer afford to assume that Mom can be allowed out of my sight. She's proven herself capable of spontaneous mobility. Every yang has its yin, and this newest development is no different: it's cause for both joy and caution.
Saturday, June 20, 2009
I'm done making and serving a huge fried-rice lunch for the parents; a home care nurse is here to change Mom's dressings and look her over.
Friday, June 19, 2009
Our heartfelt thanks go to the Grant family for allowing Dad to come pick up their wheelchair earlier in the day. Mom was busy re-learning how to walk, but Dad and I tested the chair out, and it was great. We're glad to have it around. Mom might not want to use it right now, but we're going to need it eventually.
It's not my place to reveal sensitive matters about another family on this blog, but I do feel it necessary to express my-- our-- sincere condolences to the Grants as they deal with the very recent loss of a loved one. To help us out while they deal with their own pain is... well, there are no words for such compassion.
Mom did a great job of walking down the hall from her bedroom to the living room today. She insisted on not sitting on the office chair and being pulled. With Dad's assistance for balance, she made the trip entirely under her own power. She also just spent time talking with a friend on the phone, and when Sean dropped by for a brief visit, she talked with him, too. Pretty damn good.
A home care nurse is on the way to take care of Mom's dressings, check vitals, etc. As always, a busy day.
Many thanks to the Morrisons, friends and fellow congregants, for the offer to drop off dinner. As they say in Korea by way of thanks for the meal about to be eaten: "Jal meokgesseumnida." Literally, "(I) will eat well." It's a polite promise to attack the meal with gusto. Eating heartily is, after all, a pancultural way of expressing gratitude to the founder of one's feast.
My students in Korea frequently asked me what the US English equivalent to this expression might be, and I was stumped. I normally responded that, in America, the people serving the meal might say something like "Bon appétit!" which, despite being French, is a rather common expression. The people eating the meal might wait until they're finished before thanking or otherwise complimenting their host. But saying "I will eat well" just before digging in? About the only pre-prandial expression I can think of is, "Oh, this looks/smells fantastic!" or something similar.
In any case, Mr. and Mrs. Morrison, we will eat well. Thank you.
Mr. Frady came by today and spoke with Dad and me about the ramp. It seems this project is now under way, and I once again thank all who are involved in it. Mr. Frady is going to call us back to discuss the matter further, and I imagine we'll settle on a timetable for the ramp's construction then.
Thanks-- from all of us.
We've got folks from church coming by in the morning to look over our property and see what can be done about building a code-compliant handicap access ramp for Mom and her future wheelchair(s). The construction itself will take place later; I'm not clear on when, but I imagine it will happen soon. My thanks go out to Pastor Jeri for coordinating all this, and to Mr. Frady, his son, and Mr. Dickstein for their kind involvement in this project.
It's late, and my addled brain is imagining the ramp-building as if it were a scene from "The Ten Commandments," with whip-wielding taskmasters and a young Yul Brynner barking to no one in particular, "Let us see if they can make bricks without straw!"
Thursday, June 18, 2009
A lot of Mom's Korean friends, especially these days, claim to be her best friend. Mom has plenty of friends, but I've never heard her say that "So-and-so is my best friend," which got me curious. During a quiet moment at the ER the other day, I asked Mom whether she had a best friend, or whether she liked all her friends equally. She said without hesitation that she liked them all equally.
Ladies: on the bright side, this means you can probably still claim to be Mom's best friend, because you're on equal footing with all the other best friends. Less optimistically, what this really means is that Mom is happy with her circle of friends, and that for her, "best" refers to a group that she holds above an even larger group. No single person stands out.
Whether one has a best friend is probably a function of one's personality. Some think it's juvenile to "rank" friends, but others see it as only realistic to point out that, among one's friends, there are only those select few with whom one spends the best quality time, or shares the most private thoughts, or experiences the greatest joys in the spirit of philia. And among those in that inner circle, one stands out as the very best friend. When looked at this way, it's only natural that one friend will be the best. Why not be honest and proclaim this fact?
Mom is an extrovert (at least among her Korean friends; Koreans can be pretty cliquish, and examples of this-- among Koreans of all ages-- are innumerable), which makes it natural for her to have a large pool of friends. I'm an introvert, so I have a notion of friendship that limits, almost by definition, the number of true friends I have.
It's not always obvious which personality type-- extrovert or introvert-- has the richer existence. As an introvert, I tend to think extroverts go broad but fail to go deep: variety at the expense of profundity. I imagine extroverts would claim that all their friendships are equally deep and meaningful, but I have a hard time believing that claim when it's made by someone with 300 so-called "friends." A Korean Seon (Zen) monk who visited our church once explained why most monks* don't marry a single person: their love makes them want to marry everyone. While the sentiment sounds noble, I have my doubts as to whether all celibate monks feel this way.
The "broad versus deep" dichotomy may or may not be a fair division to make, but it does seem to represent a fundamental difference in outlook when it comes to friendship. I was once accused by an out-and-out extrovert of "not giving enough" emotionally. My accuser, a woman I wasn't even dating, was being driven nuts by my combination of civility and lack of sociability, but here's the rub: from my perspective, it's the extroverts who "don't give enough," because it's impossible to tell how deeply they value any given friendship. By not making obvious distinctions between and among friends and acquaintances, extroverts end up with a pile of relationships that seem rather shallow and hollow.
Mom and I stand at opposite poles when it comes to the matter of friendship. She has dozens of friends, but no true "best friends" in the introvert's sense of the term. Instead, she has many friends who claim to be her best (or oldest) friend.
Despite my circumspection toward this type of friendship, this situation gladdens me. As much as Mom is stressed out by the thought of meeting these friends while she's in her current reduced state, she craves companionship and brightens when her friends (Korean or otherwise) show up. She has no lack of callers, and the sheer number of get-well cards she has received from all her friends-- and here I include everyone, not just her Korean circle-- is nothing short of incredible. If Frank Capra had used Mom as the protagonist of "It's a Wonderful Life" instead of Jimmy Stewart's George Bailey, the movie would have had to be much larger in scale. And as the days pass, I learn more and more about the lives Mom has affected.
I might have mixed feelings about what extroverts call friendship, but if the current outpouring of sentiment is any indication, Mom is indeed surrounded by many good friends. As the song from 2001's Baz Luhrmann hit cinemusical "Moulin Rouge" goes:
The greatest thing
you'll ever learn
is just to love
and be loved
My ruminations on friendship aside, it's obvious Mom is loved in return.
*Korean monks who marry are most likely holdovers from a tradition introduced during the Japanese occupation (1910-1945). Certain forms of Japanese Buddhism-- not all, by any means-- allowed monks to marry. Some of those tradition-strains survive today in Korea as well as Japan. In Korea, such monks are a small but noticeable minority.
Thankful for the little things:
1. We gave Mom a sponge bath this afternoon. When we were done, we set her in the rolling office chair that has served as her wheelchair for the past two days, with the purpose of rolling her from the bathroom back to the living room. As Dad began slowly pulling Mom backward to the living room, I jokingly called out from the bathroom, "Bye! Have a great trip!" Mom's reply as she crossed the threshold and rolled into the hallway?
2. Before David came to visit tonight, he called the house. We put David on speakerphone since he likes verbally clowning around for the benefit of anyone listening, especially Mom. True to form, David started singing his own twisted, faux-Korean version of "Arirang," a much-beloved song in Korean culture. Mom laughed and responded by faintly warbling the first half of the first verse of the song:
Arirang gogae-ro neomeo ganda!
These are the moments we live for.
The Bible makes a big deal about washing feet. While I'm creeped out by the notion of strangers washing each other's feet in a ritual context at church, I can now see why so much might be made of such a gesture. It's not merely the idea that the washer humbles him- or herself before the washee, but that an interesting sort of bond is established between the caregiver and the receiver of care. Feet are sensitive, and ministering to them requires loving attention. As I discovered this afternoon, the feeling of performing this humble little service is indescribable.
Mom's feet have been a bit puffy for a while, according to Sean, who came by today and stayed from about 1:30PM to a little after 3. I also noticed how dry the skin of her feet was, so I took it upon myself to play the pedicurist and perform a bit of exfoliation. I massaged Mom's feet first, just to keep circulation going, and when Mom drifted off into afternoon slumber (she's still napping as I write this), I got out some napkins and began to rub the skin of her feet gently, allowing the dead matter to drift to the floor, then cleaning it all up. I took Mom's mug of ice water, lightly wet another napkin, and went at her feet again, this time trying a bit harder to rub off the dead skin. The moisture worked wonders, allowing me to rub off even more skin, and although Mom's feet aren't perfectly exfoliated, they look a lot better now. Strangely enough, I feel better now.
If I'm not mistaken, Mom will be seeing Dr. Mirali, the plastic surgeon, this upcoming week. Dr. Tonnesen, the radiation oncologist, called to say that, based on his talks with Dr. Leiphart et al., he wants Mom to resume her in-tandem therapy on July 6 at 2:20PM.
Two major events have to have happened by that date: (1) Mom has to be declared infection-free, or to have made satisfactory progress with her antibiotic regimen (she gets another daptomycin push at 8PM this evening); and (2) Mom's scalp has to have shown sufficient healing, because radiation hampers the healing process. Back when Dr. Butler visited us, he said that Mom hadn't had enough radiation, after only two days' treatment, for there to be much concern about over-irradiated skin. He was confident that Mom's scalp would heal normally. I hope Dr. Butler is right. Dr. Mirali was more cautious, putting the odds of success at 65%.
We have several more appointments to schedule, and we're awaiting more calls about home care. We are also talking with members of the church about the installation of a handicap access ramp for Mom, to make life easier for all of us when it comes to getting Mom into and out of the house. As for wheelchairs... we've had offers from several different people (and we were told today that Inova can also order one for us, along with other home care items like a shower chair, etc.). My own feeling is that we might need two wheelchairs so as to avoid the problem of tracking dirt into the house and/or having to stop and wipe down those large wheels every single time.
Yesterday, I saw that the ER had a nifty little shopping cart-style wheelchair that was both light and sturdy. It seemed to work well for Mom, and looked easily transportable. It'd be great to have something like that inside the house: it would turn sharp corners with ease. The only real disadvantage with such a chair would be the smallness of its wheels: Mom wouldn't be able to propel herself anywhere. That's not a major concern right now, given Mom's overall weakness, but at some point she might become strong enough to want to give self-propulsion a try.
Lots to think about.
While the title of this post might suggest a love story, I'm afraid I must report that Suzanne is a health care professional sent over by Inova, not the reason for my existence. She stayed here from about 11 to noon, checking Mom's vitals and redoing her dressings. Today was something of a teaching session, with Suzanne showing me, step by step, the process by which to change Mom's dressings. Dad would have stayed, but he had a dental appointment (and has another this coming Monday; the process of replacing his lost tooth requires several sessions).
Suzanne won't be coming back; she's the "admitting" nurse for home care, i.e., she's the vanguard, the one who gets us into the home care routine. Other nurses will be involved in the care of Mom's dressings, her physical therapy, etc., from here on in.
I signed a few consent forms and reviewed some of the information pertinent to home care, and then Suzanne left.
Ah, yes: one of the happier aspects of Suzanne's visit was that I had the chance to look at Mom's scalp again. It still looks fine, which is reassuring. At this point, we're super-paranoid about the return of any serious infection. No news is good news.
I don't want to embarrass Bill Keezer by making a habit of slapping his emails up here on the blog, but I do want to hold up a recent email of his.
Bill has been sending emails regularly since this crisis began, and was already a correspondent even before that. He maintains an excellent blog called Bill's Comments (with lengthier thoughts posted at Bill's Big Stuff). He and I probably fall on different parts of the political spectrum (Bill leans more rightward while I'd call myself a centrist), but we share a non-traditional view of Christianity and a great love of scientific thought. The major difference here is that, while I'm a scientific skeptic by temperament, Bill is more: he's an actual scientist. Along with that, and despite (or because of?) his non-traditional stance toward Christianity, Bill is highly active in his own church. I don't want to reveal too much about his personal project, but he's putting together a book that I'm very eager to read.
I often feel I don't deserve the wisdom that Bill dispenses so freely. But he's an excellent, thoughtful writer, and he seems fine with directing so much of that excellence and thoughtfulness toward my family, despite the fact that we've never met face-to-face. Bill generally sends his emails to my address, but I often share them, when they arrive, with Dad. As I said earlier, I don't want to embarrass Bill by making a habit of slapping his emails up on this blog (would you write private emails to someone who consistently made them public?), but I thought you might appreciate his latest. To wit:
I read your post on "Dressing" this morning and the first impulse was to send a quick note then a longer one. But I decided I'd rather take time and do it once.
Your last three paragraphs really grabbed me. I have been in and seen too many situations where not anticipating reality made things so hard and so impossible to ever properly deal with. Your zen knowledge stands you in good stead. I read some in zen and have an inkling of what it is about, and agree. I would express it more in Western terms, but this is where there is conceptual equivalence. "... we can't hold on to her, any more than we can hold on to anyone or anything else." It is the hardest lesson to learn sometimes. Holding things too hard simply makes them harder to hold or even causes their loss.
You and your family can rest in the knowledge that you did everything humanly possible to give your mom the maximum survival time. It is now up to God, the laws of nature, and your mom's constitution. Do everything you can to focus on the good side. So many people dilute the present with anticipation of hard times. Once you have done what you can to prepare for them, enjoy the present. It is much like a Samurai writing his death poem before going into battle. It may not be THE death poem, but it releases him from everything but the present. I have done that a time or two.
It is good to see your mom improve so much. Also, she may understand more than she can express. We don't really know where things occur in the brain except in the crudest of terms. Is output function separate from input and analysis? It is in computers. Just do your best with it. She will have some understanding, at least emotionally.
All of you remain in my thoughts and prayers,
Thanks so much, Bill, for this email and all the others, past and future.
For all I know, this item may have made it into the local news.
My father and my brother Sean both told me that a house down the street from us had put up a most unusual sign. It said something to the effect that, while the wife had been caring for her cancer-ravaged mother-in-law, her husband had been cheating on his wife-- with two women! Sean and Dad both applauded the wife's chutzpah. What a terrible thing for a son to do while his mother is sick.
Wednesday, June 17, 2009
Mom's talking more again. Just a few minutes ago, she had two phone conversations, one with her brother (my uncle John), who is currently in St. Louis on business, and another with her good friend Mrs. Kopf. I don't know what was said during these conversations, and have no idea whether the conversations followed a logical train, but at the very least Mom was interacting with people over the phone in both English and Korean.
Alas, Mom is much, much weaker than she was on June 2. She was barely able to walk to the van with Dad's and Sean's assistance when we left home around 2PM. Upon our return at close to 8PM, she had only enough strength to mount the stairs to our back door, simply allowing herself to sag in Dad's and my grip right when we reached the threshold. We ended up carrying Mom inside the house, crossing the dining room and kitchen, and finally depositing Mom on her couch. As we carried her, she laughed at the ridiculousness of her situation, alternately moaning "Oh, my goodness!" and "Oh, my gosh!" between weak bouts of mirth.
We got Mom onto her couch, settling her into her favorite corner. She slumped there, shoulders sagged, staring at the floor and panting from the experience of being awkwardly carried, obviously thinking hard about something. Finally, after a few quiet moments, it came out:
"It's pretty bad, isn't it?"
I could have broken down then, I admit, but I was buoyed by this evidence that Mom was starting to grasp her own situation. I feigned ignorance:
"What's pretty bad, Mom?"
Mom didn't look up from her contemplation of the floor.
"All of it."
I sat down next to Mom and took her hand.
"Yeah, it's pretty bad." I squeezed her fingers. "But that's what we're here for."
While I was out in the ER waiting room this afternoon, a father and two of his kids sat down in the chairs next to me. The son was fascinated by my Asus Eee laptop, and the daughter, more interested in introducing herself, faced me and declared, "I'm five! I speak Spanish and English! Five plus five is TEN!"
The son, a couple years older and more worldly, asked me how much the computer cost. "About $350," I said.
"Wow, that's expensive," he said. Then he asked: "How many laptops do you have?"
I laughed. "Just this one!"
We spoke in Spanish for a bit, since I'd heard the father talking to the boy and girl in Spanish. My own Spanish is extremely basic, as I told the dad when he looked over to see his kids talking with me.
"Can I play a game on it?" asked the son, still eying the Asus.
The kids were charming, but their timing was poor. I would have said yes, but they had caught me right at 6:20, as I was getting ready to reenter the ER to see the second half of Mom's procedure.
By the time I finish with this hospital, how many languages will I have had the chance to speak? Here's hoping we meet some German speakers.
So the chronology is this:
1:30PM or so: Mom stops eating lunch, and we make ready to leave.
1:50: An Inova Health System nurse named Hulda comes by. We had called her central office to cancel her visit because of this PICC line business. It appears that no one told Hulda what was up.
2:05: We walk a helmeted Mom slowly to the van in the rain. Mom's very weak, barely able to stand on her own, let alone walk. It's obvious we'll be needing a wheelchair at home.
2:10: We're off to Fairfax Hospital's ER to deal with the PICC line blockage. The hope is that this will be an out patient procedure. Dad rides in back with Mom. Sean, who came by while Mom was still nibbling lunch, drives separately because he's got lesson or a performance or something later.
3:00: Mom is processed from the ER's front desk to the "sub-waiting" room, i.e., a waiting area past the double doors and inside the ER proper. Sean and I remain outside in the main waiting room. Later on, Sean decides to go inside, since he knows he has to leave soon. I nap.
4:00: Sean taps me on the arm to wake me up. He tells me Mom has been moved to Room 31 North. Not long after, Dad comes out and I go in to see Mom. I notice right away that no one has placed an isolation cart in front of Mom's room. These carts, which contain the paper gowns and rubber gloves we have to don when entering a MRSA-positive patient's room, are supposed to be there at almost the same time the patient has been berthed. My immediate thought is that Dad forgot to tell the nurses that Mom was MRSA-positive.
4:15-ish: Quite by accident, I meet Dr. Bagenstos, one of Mom's docs, in the ER. "What are you doing here?" he asks. I roll my eyes: "Mom's PICC line is blocked." I mention that Mom is MRSA-positive but that no one has put an isolation cart by her room's door. Dr. B finds another employee, who has to look around a bit to find a cart. I peek quickly past the curtain of Mom's room to say hi to her, and to tell her I'll be in shortly.
4:20: I gown and glove up, and step in to see Mom. She's once again on a gurney, with no pillow for her head. She's using her arm to support the back of her head-- exactly the sort of thing she's not supposed to be doing, because there's a chance she might unmoor her skin graft or reopen one of three long incisions across her scalp. I de-gown, exit, and ask another random employee to find a pillow for Mom; she very kindly stops what she's doing and finds two pillows.
I sit in the room and talk quietly with Mom in English and Korean, re-explaining why she's in the ER, trying to impress upon her the chain of events that have led up to this moment. Mom seems to understand, but as always, it's hard to tell.
5:50: Mom's been waiting 2 hours and 50 minutes for someone to see her. A nurse steps in; turns out she's half-Korean and has overheard me speaking Korean to Mom. She explains a bit about how PICC line blockages can happen, and describes the dissolution-suction procedure, which takes from 1 too 2 hours. She starts the procedure, then promises to be back at 6:20 to do the other half.
The procedure involves administering a solution that dissolves the blockage. A full dose is given as a 2-step procedure: 50% push, wait 30 minutes, 50% push, wait 30 minutes, then suck out the dissolved material. If the PICC is still blocked, wait another hour.
6:22: I'm back in the ER after typing all the above. I've found out from Dad that he did tell the professionals about the MRSA issue. The nurses, as it turns out, are done and Mom is ready to go. All that's left is to process out. I'm on my way to the parking lot while Dad deals with paperwork and the nurses fetch a wheelchair. Soon, we drive back home.
Many thanks to Mrs. Neet and to Mr. and Mrs. Kang for attempting to visit yesterday. Mom is currently enjoying the lunch that Mrs. Neet made for her.
Mom's still lunching and looking at a new pile of cards that had arrived at home in her absence. We're going to have to persuade her onto her feet soon to hit the ER.
Two home health nurses visited us at 11AM. They got Mom's history, redid her wound dressings... and noticed that Mom's PICC line wasn't letting anything through it, a fact Dad had discovered last night when attempting to give Mom her first infusion of daptomycin. Mom will have to have the PICC either flushed out or replaced. In either case, this will mean driving Mom back to Fairfax Hospital in the next few minutes. In the case of PICC replacement, I'm hoping this will be an outpatient procedure.
As a result of this latest development, the remaining visits by various health care professionals are being cancelled (as is Dad's dental appointment, which is now rescheduled for tomorrow).
We leave as soon as Mom finishes lunch.
Just FYI, Mom slept well last night and is about as talkative today as she was yesterday. She's trying hard to walk on her own, but the effort tires her out quickly, and her balance is fairly shot: even when she's sitting down, she tends to list to one side.
She'll definitely need a wheelchair once she reaches the ER today.
More updates by BlackBerry likely.
Tuesday, June 16, 2009
Mrs. Faircloth, the lady who spent some time in the bed next to Mom's, was taken away-- still quite weak and bedridden-- in the early afternoon, a few hours before Mom's own discharge. A nurse confirmed that she was being taken back to her nursing home. I can only hope the poor woman doesn't fall again: I saw the terrible bruising all up and down on her right forearm, and felt a pang for her.
I never did confirm the identity of the gentleman who visited her during the second and third days of her time in the hospital, but I'm pretty sure this man was her son. He and I exchanged cordial nods on two occasions. He seemed friendly enough-- not as withdrawn as I can be. I was glad he was there for Mrs. Faircloth. I wish them both well.
We're home barely an hour, and Mom has already stripped off the protective dressing from the back of her left thigh, exposing the glistening rectangle of skin from which the graft had been harvested. Yes, I said "skin" and not "flesh": her leg doesn't look nearly as bad as we had thought it would. Somehow, in my Stephen King-fueled imagination, I saw that wound as a horror of exposed muscle. It wasn't. The layer of skin that got stripped off was very, very thin, and the raw rectangle on Mom's leg, while vulnerable to infection, isn't a bloody mess by any means. We can all relax about that, at least.
Sean and I went through the laborious procedure of re-dressing the site, during which time Mom had to lie on her side in bed. Mom got fully into bed when we finished, and talked with Sean. The fact that she's able to have mini-conversations now is heartening.
SEAN: Mom, you didn't even say hi to me when I came by today!
MOM (giving Sean her sincerest doe eyes): I was gone!
Indeed, Mom had been asleep while Sean was at her side, and Mom's "I was gone" indicated that she had figured this out.
None of this is to say that Mom is chatting away fluently. Her ability to converse comes and goes; we're still dealing with cognitive and memory impairment (she temporarily forgot that Dad had been with her all day today), and probably will be for the long term. Any improvement, however ephemeral, is something to hail.
In other news: while Mom was asleep, Dr. Wolk's proxy came by and told us that now would be a good time to begin facing the grim realities of Mom's GBM prognosis-- to be thinking about and discussing whether we want the professionals to use "heroic measures" should Mom suffer heart failure or other extreme problems during the end stage of her cancer. Infection, the doc said, is the way that most GBM patients die. The doc also gently suggested that Mom needed to be involved in this discussion while she was still in possession of some measure of her mental faculties. I agreed, but with a heavy heart: it's still not obvious to me that Mom fully understands her own situation.
Dad, ever hopeful, brought up the patient in the room next door-- a wife who is five years past a GBM diagnosis. Dad had spent time talking with the woman's husband outside in the hallway, and I suspect he's latching on to whatever silver lining he can find.
But the brute reality is this: our hopes are bounded by the statistical and biological realities of Mom's situation. The woman next door is in the lucky 4% who survive 5 years or more beyond their diagnosis. It's perfectly rational to hope for my own mother to be in that select group as well, especially at this early stage, but it's not rational to avoid planning for probable outcomes. A great deal of human misery results from a refusal to face things as they are; we, as a family, all need to be on board about what the future likely holds for us. Whatever hope we may each hold must be leavened with pragmatism, and that would be true even if cancer weren't in the picture.
But this isn't to say we should be joyless and mopey. If anything, Mom's prognosis highlights the fact that life is a gossamer, fleeting thing, and that as a result, every moment counts, and every second is maximally precious. So each time Mom smiles is a treasure. Each step she takes on her own is a gift. Each remembered event, each laugh, each successfully navigated conversation, is a benison, another memory to treasure.
Mom is alive. We have her now. But we can't hold on to her, any more than we can hold on to anyone or anything else. Jae beop gong sang: all phenomena have the character of emptiness. All things are here, and all things are passing. Accepting this is important-- not to deny or suppress the grief to come, but to make it easier to handle, and to return us always to a proper experience of this moment.
Today marks Mom 15th day at the hospital. She was discharged around 4PM, and was out by the main entrance, waiting in her wheelchair, at 4:30PM. We just got home, having avoided the worst of the rush-hour traffic.
Much to do tonight and in the coming days: doctor appointments to arrange, home care nurse and physical therapist visits to deal with, and more meds and equipment to buy. Please hold off on visits until Mom is again properly settled in.
And as always, PLEASE call at least 24 hours before visiting. At this point, frazzled as we are, this guideline is no longer only for Mom's peace of mind, but for all of us. Thanks in advance for your cooperation.
According to David, who came to the hospital last night, Mom was decatheterized. I also noticed that Mom's cranial drain has been removed. These are good things, but Mom now needs to call a nurse to help her walk to the bathroom.
A few minutes ago, Dad mentioned that Dr. Wolk will be back to see us. We plan to ask him about the wisdom of discharging Mom today. Much depends on his answers: if he feels Mom's anemia, low blood count, and low potassium aren't problematic, and that Mom's lack of mobility isn't a major issue, then we might consent to taking Mom home. If we still have a bad feeling about all this after hearing the facts, we'll insist on keeping Mom here until she's truly stable.
As of 11:30AM, Mom is once again sleeping. Earlier, she sampled some food given to her by Mrs. Quigg-- two types of Korean soup plus rice.
Mom was somewhat talkative when she saw us come in at 10:30. I was happy to see this. Mrs. Walters apparently left Mom a card, but the card seems to have disappeared. Mom insisted that the card was "here," but when I asked her to show it to me, she lapsed into silence.
11:40AM: Mom's about to get her head and leg dressings changed. More later.
Monday, June 15, 2009
Before the day is done, I need to offer a public HAPPY 40th BIRTHDAY! to my best buddy Mike, whom I've known since the third grade. Historian, raconteur, bon vivant, and family man (the last two items probably produce a certain amount of static), Mike blogs at Naked Villainy, where he wears his special brand of conservatism on his sleeve, dubbing himself the Maximum Leader and blogging in the self-parodic third person.
Like me, Mike's a bookworm. His pet subjects are history, politics, and philosophy, but he's happy to engage in discussions on just about anything: sports, cooking, religion, whisky, etc. Want to get on Mike's good side? Ply him with scotch and praise William Churchill. If you happen to be hiding some Cuban cigars in your contraband locker, share one with Mike and your passage into heaven-- well, his version of heaven, which might resemble a cosmic Hooters-- is assured.
Mike and I have scarily similar temperaments, but frequently divergent tastes. Such similarity and contrast are what make our friendship work, I think. My own leanings are more toward science, religion, and philosophy; Mike gravitates toward history, politics, and philosophy. When cooking, I'm more of a slice-it-up person; Mike is more chunky-style in approach. Mike likes watching team sports such as hockey and football; I'd rather watch individual sports like singles tennis and boxing (and the occasional Ultimate Fighting tournament). Both of us are fans of "Battlestar Galactica," and both of us came away from the series finale with very mixed feelings (my long essay on the theology of BSG is here).
Mike is also a proud husband and father of three: two lovely daughters and one squirming, wriggling, energetic son. I'm sure Mike would be the first to say that no family ever achieves perfect harmony or fulfillment, but I'd counter that perfection is what we see in and through the imperfect. Mike's children-- the eldest of whom is my goddaughter-- faithfully reflect their parents' values in their own thoughts, words, and deeds. Mike has turned out to be a fantastic father, and he did well to marry a woman who so perfectly complements him, truly meriting the term "better half."
On June 15, 1969, my best friend was born, and my life has been richer for it.
Happy birthday, bro.
We're going to lobby for Mom to remain in hospital a little longer. The more I thought about it throughout the day, the more uneasy I felt about allowing Mom to be discharged in the next 24-36 hours. If infection was the problem before, then how is releasing her now a better solution? Her potassium level is down, she's anemic, and her blood counts are low (I'm no medical professional, so it's possible these are all interrelated and/or overlapping problems). Signs point to immunodepression-- precisely the sort of scenario that can invite MRSA back into Mom's skull. I also harbor a suspicion that although Mom initially caught MRSA in the ICU when she arrived there on the evening of April 16, her time at home after the first operation wasn't helpful, either. Perhaps we could have done something more to promote hygiene-- stopped her from picking at her scalp, washed her more frequently and more thoroughly-- something. Home isn't necessarily any safer than the hospital.
We want to avoid making mistakes this time around, given how important it is that Mom's various incisions and wounds heal. Without healing, she can't resume therapy. Without therapy, there's no hope of fighting the tumor, a goodly percentage of which (roughly 10-20%) was never removed.
More on this tomorrow.
ADDENDUM: It's my understanding that the Walters came by to see Mom today. Dad, Sean, and I had already left, and David might not have arrived by the time the Walters came by, but I thank them for taking the time and making the effort to visit, even though we didn't have the chance to meet.
Well, well, well-- quite the cavalcade of visitors today! Alas, in their excitement to see Mom, people have been forgetting that they should call us 24 hours in advance... but Mom doesn't seem to mind, and that's all that matters. It's barely noon, and Mom has already seen quite a few people. (NB: dropping in suddenly isn't a big deal, mainly because we're in the hospital. In other words, we don't have to tidy up the house every time someone wants to drop by. That will be different once Mom's back home, as Mom herself is easily stressed by unannounced visits to her home.)
1. Around 10:25AM, Dad and I saw Dr. Mirali, the plastic surgeon. He says that, at least as far as Mom's scalp goes, she's ready for discharge from the hospital as of today. Obviously, Mom will remain in hospital a while longer, as we're still monitoring her for infections and other possible post-operative sequelae. Dr. Mirali saw Mom's helmet, which we had brought in for his inspection, and pronounced it good to use on Mom's head, even though the fit might be snug with the additional dressings. Overall, he's happy with Mom's progress.
2. Around 11AM, we had three people show up: Pastor Kim and his wife, and a certain Dr. Butler, who works with Dr. Meister, the medical oncologist managing Mom's Temodar regimen. You'll recall that Mom is currently off therapy because she's dealing with infection issues, but the oncologists have to remain in the loop: Mom needs to resume therapy as soon as possible.
Dr. Butler confirmed that the cross-hemispheric material was from the tumor. He also noted the presence of cancer around the edges of the cavity where the debulking occurred on April 21. He noted that this was perfectly normal: lack of cancer in that area would have been strange. We have nothing to worry about in terms of sudden metastases in the brain, spinal cord, or the rest of the body: gliomas apparently prefer to remain in the brain; their aggressiveness articulates itself in a slow, steady, insidious way, unlike other cancers that infiltrate large volumes of tissue within the space of a week.
The oncologists promise to coordinate with the other docs to get the timing right for the restart of Mom's radio- and chemotherapy. It'll be at leas another few weeks.
3. A second couple, Mrs. Whitaker-Frevert and her husband Mr. Frevert, came by, bringing Mom a vase of flowers and a wig. Mom was fascinated by the latter, which she took out of the resealable bag and inspected. Mrs. Whitaker-Frevert did a fine job of talking to Mom. As with Mom's other Korean friends, Mrs. Whitaker-Frevert was very encouraging and supportive.
4. Dr. Yoho, the infectious disease specialist, dropped by initially to see Mom's roommate (who I now know is surnamed Faircloth), but spent some time talking with us. Mom is on an antibiotic called Zyvox, but there's a chance she might be switched back to daptomycin when she's discharged.
It's my understanding that more people are on the way-- one couple will be arriving in a few minutes, and another is coming this evening. It's possible that Pastor Jeri will also put in an appearance, but Pastor Kim had mentioned, several days ago, that he and Pastor Jeri have been alternating visits.
Mom is much more awake and verbal today, though still nowhere near capable of extended, fluent conversation. She was also nauseous between visits (a possible result of the antibiotic Zyvox, according to Dr. Yoho), but a nurse gave her some anti-nausea medication through her PICC line. We were told that Mom had been spitting up after breakfast this morning; when she tried taking the fragment of a potassium pill in our presence around 11:40, she managed to keep the pill down, but regurgitated into a plastic basin that Dad got under her chin in time.
Mom is being changed by the nurses right now; she's no longer nauseous. I'm out in the main lobby, writing up this blog entry and waiting for Dad to call me back up so we can feed Mom her lunch. Pastor Kim and his wife had brought some Korean food, and I had brought along a serving of Mrs. Kopf's seaweed soup. Mom ought to have plenty for lunch, but I do worry about whether she'll be able to keep it all down.
UPDATE: Dad forgot to call me back up to help Mom with lunch; he's been feeding her. I'm on my way up now, though it's possible that lunch is now over.
UPDATE 2: We've had more visits, this time from Mr. and Mrs. Harding, more of Mom's friends. The Hardings brought various gifts, including some Korean bakery items. Upon seeing the food, it occurred to me that bringing individually wrapped consumables was a great idea. One of the main problems with bringing food to the hospital is that Mom might not always be able to eat everything, and once she's done, the leftovers have to be thrown out: no one else may eat them, and the food may not exit the room due to the MRSA isolation protocol. The nice thing about small, not-so-perishable items is that they can be saved until the next meal.
A speech pathologist also wanted to come in to see Mom, but apparently decided to wait. She hasn't come back. Three more doctors came by: Dr. Leiphart came in to check on Mom and was happy to see her more talkative. Dr. Wolk of internal medicine, who was pretty frank about Mom's prognosis (we told him we were aware of the survival rates for GBM patients), and Dr. Bresner, a neurologist who had come in to check on whether Mom's nausea might be brain-related.
The upshot is that Mom's potassium level is low, and her blood count is somewhat depressed. She's anemic, too, which makes me wonder why the docs think she can be discharged in a day or two. I'd rather have her stay in the hospital until she's as stable as can be.
Dr. Wolk noted that, because Mom's tumor will only worsen over time, it's necessary to think seriously about things like wheelchair access for the house so that she can be wheeled to and from the car on her trips to the hospital.
ADDENDUM: I hope people don't find my first paragraph too brusque or rude. I didn't write it in a spirit of resentment, but as a reminder that we really do prefer some sort of advance notice before people come to see Mom. She's easily tired out by too many visits, and Dad and I need the chance to coordinate things by putting the visits down on a calendar. As I noted earlier, this will be even more true when Mom is back home. Please respect the 24-hour guideline. Thanks in advance.
The plastic surgeon, Dr. Mirali, came by around 11AM or so (Sunday), checked and changed Mom's head dressings, and looked over Mom's leg dressing. I had the chance to look at Mom's scalp, which is now completely bald except for a few random tufts and wisps of gray hair. At long last, she and I finally look like escapees from a Korean Buddhist temple, and while I'm tempted to take a photo of us both in our shorn state, I know that such a move would horrify Mom, who still has some sense of dignity, even if I lost mine years ago.
My point is that I had the chance to see Mom's scalp for myself, and I'm happy to report that her primary incision-- the one that was the gateway to all of Mom's most recent problems-- looks a thousand times better than it did when Mom came in on June 2. The incision itself, now sewn together with much less tension and cleared of the bloody, infected mess that had been there, looks the way a post-surgical wound should look: clean, clear, and straight.
Later on Sunday, Mom had two more visitors: Mrs. Jemma Bishop, and Pastor Jeri. I stepped away with Sean to sit and relax in the cafeteria; based on the remains of Mom's dinner tray, I gather she ate both Western and Korean food for dinner, though I didn't look closely enough at the leftovers to see what sort of appetite Mom had displayed.
Many thanks to all of Mom's visitors this weekend: Mike, Pastor Jeri, Cheong Burns, Mrs. Kopf, Mrs. Quigg, and Mrs. Bishop. I hope the visits continue; Mom needs as much mental stimulation as people are willing to give her. No one can force her to talk, but by constantly exposing her to speech in a convivial environment, it may be possible to rouse her own desire to participate in whatever discussion is going on.
Sunday, June 14, 2009
Whoever Mom's roommate is, she's the picture of abject misery-- sunken cheeks, wispy white hair, and a shrunken, brittle form, looking for all the world as if she were approaching her final days. Not a single visitor came to see her the entire time I was at the hospital. I have no idea whether the poor woman can even talk, though I know she can moan and cough. My brother David overheard that the woman had been living in a nursing home and had fallen, which is what had brought her to Fairfax Hospital. Like Mom, this woman is MRSA-positive. We know this because only MRSA-positive patients can be berthed next to Mom who, upon entering her current room, assured that the room would be subject to an isolation protocol.
While I hate to give my church's pastors more work, I'm hoping they might take a few minutes to sit with this woman. In the time I saw her, she was either lying in bed with her eyes closed or was staring sadly off into space. Time and again people have commented on how much of a support group my mother has, but today, we saw no one come to be with this lonely creature-- no one other than the nurses who periodically cared for her.
Might this woman reject attempts at contact or interaction? Would she respond positively to a warm hand? I don't know; I haven't tried it myself, though I might try tomorrow if no one shows up to see her. What a horrible way to spend the gloaming of one's life-- alone in a hospital, bereft even of the most basic human warmth born of well-cultivated relationships.
I hope I'm wrong: I hope that she has visitors, lots of visitors, tomorrow.
Today, Mom seems a bit less talkative, but about the same as yesterday: awake, alert, and even able to feed herself (though she didn't mind getting help at lunch).
My buddy Mike came by and regaled us with stories from his life as a husband and father; he turns 40 tomorrow, being among the first in my circle of friends to do so (my turn comes in late August). After we had fed Mom, we-- that is to say, Dad, Mike, and I-- drove down the street to The Four Sisters, a Vietnamese restaurant that had been recommended to us by Sean. For once, this was our treat for Mike: Mike has already treated us two or three times to dinners at Sweetwater Tavern, a family dining spot that features good food, but isn't exactly cheap. Dad and I thought Mike might enjoy a lunchtime birthday treat; it was the least we could do for my buddy since third grade.
The Four Sisters proved not to be cheap, either, but the food was delicious and very reasonably priced. The service, though a bit harried, was prompt and error-free. I, for one, enjoyed my spicy chicken and ginger. I think Mike liked his seafood combo and Dad enjoyed his sesame chicken. How Vietnamese any of this was is anybody's guess. Dishes change when they enter a foreign culture, sometimes to the point that visiting natives can't recognize them. Case in point: when you order spaghetti at an "Italian" restaurant in Korea, you'll get a little bowl of sweet pickles on the side-- a fresh, crunchy substitute for the normally ubiquitous kimchi. Korean pizza might include ingredients like corn and bulgogi. The list of conversions and perversions is long, and it wouldn't surprise me to learn that most of the "Vietnamese" menu at The Four Sisters isn't really Vietnamese.
Mike left after lunch to go home to his family and grill flounder for dinner. When Dad and I walked back into the hospital's main lobby, we saw that two of Mom's Korean friends had arrived: Mrs. Kopf and Mrs. Quigg. They bought Mom balloons and a bouquet of hospital-safe silk flowers; when we got to Mom's room, they showed Mom that they had also brought along some Korean food, which Mom will have for dinner.
Mom now has a roommate, a MRSA-positive grandmother with a deep, rattling cough. She didn't have any visitors at the time she was brought into the room; I can only hope that someone will come see her before visiting hours are over. She looked sad and alone.
Because of the new roommate, and because Mom was initially asleep when we gowned up and walked in, we all had to talk in hushed tones. Dad and I updated Mom's friends on her condition; I sensed sadness and optimism emanating from the two ladies.
Perhaps as a way of cheering Mom up after she had awakened, Mrs. Quigg asked Mom if she would be up to assuming the role of president of the local Korean-American women's society again. She also told Mom to get better: "Think about your husband and children! They need you! You know you want to cook for them!" Mom nodded assent.
Upon hearing this, I found myself recalling a scene from Juzo Itami's movie "Tampopo," in which a dying wife is commanded by her husband to make dinner for him and the kids. The scene doesn't really fit the cheerful tone of the rest of the movie, and is instead a window into poignancy: the wife, deathly ill, shakily pushes herself to her feet and proceeds to make a meal for the husband and her children. She manages to sit at table with them, and holds herself up long enough to see that everyone is eating heartily. With a weak smile on her face, the woman slumps sideways to the floor and dies. The tearful husband commands his children to keep eating: it's the last meal their mother would ever make.
Why would the husband make such a demand of a woman so near death? I suspect it was an appeal to the wife's love and her sense of duty. The husband wasn't trying to be cruel; like anyone else, he wanted to see the love of his life move about-- act alive-- just a little bit longer. What's more, the wife wanted to show her love and devotion to her family. Such a scene might seem foreign to us non-Japanese, but it follows a comprehensible emotional logic.
The husband's behavior doesn't qualify as "tenderness" by Western standards. Similarly, some might interpret Mrs. Quigg's words to my mother as overly harsh or demanding: how could Mom possibly serve as the women's society president, or even expect to cook for her family, months or even years from now? Mom's got an incurable brain tumor, after all. But I'm sure Mrs. Quigg was appealing to Mom's own sense of love and devotion, providing Mom with simple reasons to go on living. She did this in a Korean way, but her intentions were benign.
Mom was a bit quieter today than she was yesterday. This may have been because she was content to listen to Mike and to her Korean friends. Perhaps it was enough for her to let the pleasing sounds of conversation wash over her; perhaps it was enough for her simply to nod "yes" when she was directly addressed. Conversation is something we can hope for later. It can't be forced out of her; she'll heal on her own time.
Both of Mom's friends are eager to help out by bringing Korean food to the hospital. As long as food deliveries are timed to coincide with Mom's mealtimes, this won't be a problem. The problem arises when food is left to sit in Mom's room for several hours: there's no place to refrigerate it.
I'm in my usual aerie right now (the cardiac telemetry waiting room), and just learned via text message that a third Korean friend, Mrs. Bishop, has arrived to see Mom. Many thanks to her as well for visiting. I suppose I should head back to Mom's room.
Mom's Saturday was eventful and momentous.
1. Mom sat in a chair twice, the first time thanks to the help of a physical therapist in the morning.
2. Mom was more verbal than she's been, often making sentence-length utterances. She has a long way to go, though, as she's still fighting aphasia and is often unresponsive to questions posed directly to her.
3. Cheong Burns came to visit, very kindly bringing Korean food for Mom and a wad of cash for us guys to use for meals. Mrs. Burns fed Mom lunch and talked with her, even staying a while to watch over Mom after she had fallen asleep in the afternoon.
4. Mom insisted on walking to the bathroom, and despite a shaky start, she made the round trip under her own power as we walked alongside her, ready to catch her if she collapsed. Her knees, though wobbly, never once let her fall. We're very proud of Mom for this.
5. Pastor Jeri arrived in time to see Mom eating dinner, which she ate ravenously (Mom, that is, not Pastor Jeri). When Pastor Jeri said "I love you" to Mom, she replied very clearly, "I love you, too."
6. David came by in the early afternoon and stayed until 6PM or so. He prepped Mom's dinner, then had to leave, but we were all witness to the extraordinary fact that Mom took her fork and began actively feeding herself.
7. We were all disappointed that the plastic surgeon didn't come by to look at and redo Mom's head dressing. We were told that he might come by during the night or the following day (i.e., Sunday). The nurses put on a temporary dressing for Mom's leg to prevent to much seepage, and Mom got pain meds throughout the day to ease the discomfort of all those bandages and punctures up and down her poor body. Her endurance is something to behold.
I also need to add two notes of thanks-- first to Mom's friend and NALC coworker, Donna Brandes, who gave us some excellently made moussaka. Secondly, we need to thank the Bennetts (fellow congregants) for their scrumptious lasagna, salad, and brownies. And as always, we're thankful for the cards and the many other kindnesses that have come our way. We're fortunate-- and humbled-- to have so much support.