[Reminder: see this post for information about the memorial service for Mom. I'm assuming that, if you're savvy enough to be online, you're savvy enough to use MapQuest or Google Maps to get directions to the church. There's no reason to phone the church (or us) for directions. Both aforementioned websites are extremely easy to use. Thank you for understanding.]
Sometime around the end of January, this blog will go dormant, its purpose having been fulfilled. It had originally been about my walk across America, but it became a chronicle of something far more important: the decline and death of my mother due to glioblastoma multiforme, the most common and most aggressive form of brain cancer there is, and a cancer for which there still exists no cure.
There's very little left to write about as regards Mom's story; we stand in the aftermath of her passing. For now, our family's focus is on getting through the memorial service more or less in one piece, emotionally speaking. I did most of my sobbing on the day Mom died, and have cried a few times since then, but we are all, slowly but surely, picking ourselves up, dusting ourselves off, and doing our best to climb out of the wreckage of the past nine months.
Nine months. The time it takes to gestate a baby. It's still hard to believe that Mom is gone, but there we are-- those are the facts. Mom stepped through one door, and soon we'll step through another: the gateway to the rest of our lives. Here's hoping for brighter horizons.
You may have noted that I haven't described the events of Wednesday, the day Mom passed away. That was a deliberate choice. I did, in fact, tearfully type out a detailed report of Mom's death a day later; that part of the story might appear in the book version of this sad tale, but for now, I'm keeping it private. You, Dear Reader, don't really need to know what I saw and felt that day. Not yet, anyway.
Mom's been gone a little more than three days. Dad's been on the phone with various people, and today he received a visit from the funeral home providing cremation services. I've been working on several things at once: the format for the memorial service liturgy, Mom's bio for the church bulletin, her eulogy, and the biggest project of all: the compilation and finalization of a pictorial tribute to Mom. I'm hoping to send Pastor Jeri a draft of the liturgy format tonight; I also want to send her the finished bio, if possible. As Dad reminded me, we've got a lot of housecleaning to do since we're sure to have guests over the weekend. Relatives will be flying in from Texas; I'm not sure how many (if any) will be staying at our house, and how many will be rooming with our relatives in the area, or at local hotels. David and Sean are already sleeping at our house, but we're all willing to give up beds for house guests. To be discussed, I imagine.
It's been a bright, sunny day. Another day without Mom. I feel no self-pity about my own situation-- no sense of "woe is me." Instead I'm sad, profoundly sad, that Mom doesn't have the chance to see today's sun, or enjoy the way Sean's dog Maqz has been bounding happily around the house. I suppose this empty feeling will be with us for a while.
Ah, yes, before I forget: once the pictorial tribute is done (which should happen in the next few days), it will first appear on Flickr.com. This blog will provide a link to it.
Saturday, January 9, 2010
[Reminder: see this post for information about the memorial service for Mom. I'm assuming that, if you're savvy enough to be online, you're savvy enough to use MapQuest or Google Maps to get directions to the church. There's no reason to phone the church (or us) for directions. Both aforementioned websites are extremely easy to use. Thank you for understanding.]
Thursday, January 7, 2010
Those interested in making the pilgrimage to attend the memorial service for Mom should be advised that we've fixed a date and time:
10AM on Saturday, January 16, 2010
Mount Vernon Presbyterian Church (MVPC)
2001 Sherwood Hall Lane
Alexandria, VA 22306
There will be a reception afterward in the Christian Education Building, also located on the church grounds. Whether you live nearby or far away, you are all invited to attend. Pastor Jeri says that the MVPC phone tree will be activated to alert people that they are, if they wish, free to bring hors d'oeuvre-style food for the reception. I told her that I would do my part to advertise the memorial and reception to this blog's readership.
If you're an online friend whom I've never met face-to-face (and that would be most of you), perhaps we'll meet each other there. Please don't feel I'm pushing you to come, though: it's going to be an awkward day on which to meet for the first time, and you may live far enough away that travel time and expenses might be prohibitive. So if attending such an event makes you uncomfortable for any reason, I understand. I'm sure we'll still be in touch via email.
Our family thanks you in advance for attending the memorial service, and to all those who have sent condolences and photos of Mom: you have our gratitude.
Wednesday, January 6, 2010
At least for the next little while, the world has ended. I don't feel like sharing much at the moment, but I'll say this: Sean, Dad, and I were there in time to witness Mom's passing. Her heart stopped beating, and just to be sure she was comfortable, a tech added morphine to her line. She passed away, her chest still moving from the ventilator. David arrived just after she had gone.
Mom died of her own accord; no extubation was necessary. I don't attribute any volition to her timing-- as if she had somehow chosen her moment-- though I suppose it's romantic to think that she died on her own terms. That's fine with me. And who knows? Maybe it's the truth. Personally, I think she was already gone, so this was only a matter of time.
Rest in peace, Mom.
We're over four hours into Mom's final full day on earth. Perhaps I'm reckoning that wrongly: as I mentioned before, I think Mom checked out weeks ago, in the early morning on December 22. Wednesday is, at the very least, her body's last full day among us. We spoke with a doctor, a chaplain, and a social worker, and have all agreed that Mom's extubation will occur on Thursday morning at 10AM.
Every human story begins full of promise, and for most of one's life, it's a mystery as to where and when the final pages of that story will be set. We harbor the illusion that that non-specificity can somehow stave off death: as long as we don't know the exact time and location of our demise, life seems to have no limit.
But for Mom-- or her body, at least-- we now know. Mom will die in Washington, DC, inside the Walter Reed Army Medical Center, either in the Ward 40 ICU, Bed 7, or upstairs in a one-bed palliative care facility (assuming Mom lingers longer than an hour off the ventilator, and further assuming that the bed hasn't been taken by someone else). Mom will fade away to a chorus of mechanical whooshes and beeps and drips, with medical staffers outside her berth going about their business-- some serious, some joking with their colleagues, blissfully detached from this, our family's threshold moment.
But Mom will leave us in the daylight, and she'll be surrounded by her family: those who love her most. We four guys will be there for her, along with Pastor Jeri and my other brother Mike. We'll stay with Mom until the doctor declares her dead and announces the time of death. This will set in motion a series of events that are, thankfully, out of our control: the signing of a death certificate, the moving of Mom's body to the morgue, its transferral to the cremation service, and the service's completion of the death certificate.
At that point, we regain some control over the proceedings. Mom's ashes will be delivered either to us or to the church, depending on whatever Dad arranges. We'll continue to hash out the format for the memorial service (probably Saturday, January 16; we'll confirm this). I'll finish the photo tribute and my eulogy; Dad will compose his as well. Sean will rehearse with some musician friends; he's already selected two classical pieces for the memorial-- pieces Mom loved. The family will comb through scriptures for appropriate verses.
But back to the present. This day, Wednesday, is everyone's final chance to visit Mom. I apologize if some of you have been turned away by the ICU staff; we had originally been told that anyone could visit Mom at any time, but we've heard reports from some that the ICU staff is asking non-family members to visit between 11AM and 8PM. The staff itself hasn't been particularly clear or consistent about visiting policy, so please call ahead to confirm that it's OK to see Mom at your desired time.
I'm not sure what I'll be doing; I may stay with Mom a few hours throughout the day, then go home, sleep, and return in the morning to be with her in her final minutes before she steps through the Great Door. Or I may decide to remain with her through the night-- one last vigil at her bedside. I really don't know.
Do you have regular photos or digital photos of Mom that you would like to be included in the pictorial tribute? Please email them to me (my contact info is available through a link on the right-hand sidebar of this blog) or mail them to our family (email me for our address, which I'm hesitant to display in public) as soon as possible. If they don't arrive soon, I might not be able to include them.
If possible, please indicate the YEARS in which the photos were taken. I'm segregating photos by decade, in this format:
Chapter 1: 1940s-1960s
Chapter 2: 1970s
Chapter 3: 1980s
Chapter 4: 1990s
Chapter 5: The Aughts (2000-2009)
Chapter 6: The Cancer Period (4/2009-12/2009)
I don't want Chapter 6 to scare anyone. I have no desire to show vivid images of Mom's disease. There will be no MRI photos, no pictures of her damaged skin or of her craniotomy site, no photos of Mom's final weeks (as you can imagine, I never took any). There will, however, be images of Mom in various stages of disability. This can't be helped. Some images will be painful to see, but trust me: whatever pain the viewer feels won't compare with the pain of having actually been there, with Mom, to feel her misery up close.
Chapter 6 is important to me. This is the time when I reconnected with Mom in ways that hadn't been open to me since my childhood. The cancer gradually stripped Mom of her sophistication and returned her, however cruelly, to a state of simplicity that pared away a lot of the anger and resentment that often characterized my relationship with her, especially during my college years and my twenties. Did I pity Mom during her illness? Of course I did-- who wouldn't pity a person in such straits? Would she have resented my pity? Of course she would have. She did, in fact, get angry with me when she discovered that I didn't plan on returning to my trans-American walk. She knew I was staying because of her, and the thought burned her.
But any disease that rips away a person's dignity will engender pity. As proud as we were of Mom's defiance, it grieved us to see her independence drain away as quickly as it did. At the same time, the disease was a gateway through which I found myself once again able to hug Mom, touch her face, kiss her cheek or forehead, and hold her hand for long, long periods. I walked with her, joked with her, and above all, I fed her. Our relationship had become both a role reversal and a regression.
For Dad, too, this newly docile Mom was finally accepting his tender gestures without her usual Korean brusqueness-- the silly feminine rebuffs that Korean women will use to pretend that a man's gestures mean nothing to them. Perceptive men, like Dad, see through the ruse and understand that, hidden underneath such denials, there lies a deep and abiding love. But with the cancer peeling Mom down to her core, the time for ruses had ended. Dad, too, was introduced to a simpler, more direct emotional connection with Mom, one not complicated by the mind games that couples play. Her "I love you" to Dad was evident in the way she looked at him and embraced him-- toward the end, she was holding on to him for dear life whenever she had to move anywhere. Her dependence was complete, but it was matched by her absolute trust in Dad.
I've spent these months in Mom's role, frequently carping at Dad whenever I felt he was making a serious mistake or being generally loopy. But in the end, Dad was the one who was there to take care of Mom every time she awoke and every time she went to bed. He faithfully gave Mom her meds, following a schedule had been painstakingly plotted out. He was (and still is) the one taking care of all the paperwork associated with regular bills, insurance, and all the rest. He's even been sustaining me during this jobless period of my life with regular monetary infusions. Dad's retired, and neither of us could have taken care of Mom as we did had we gotten jobs. As I said: 24/7 care.
So much credit must go to Dad for the way he ministered to Mom. If imitatio christi (the notion that one should use Christ's life as a template) includes some analogue for foot-washing, then Dad was Jesus a thousand times over. He washed Mom; he insisted on being the one to prep her for travel, and despite the wrenching pain in his back, he was determined to be the one to lift Mom onto and off her seat in the van, almost every single time.
Tuesday night, after the doc and social worker and chaplain had left, Dad stared at the floor and said he felt he had let us all down by not somehow keeping Mom with us.
You didn't let anyone down, Dad-- least of all us and Mom. I saw that in Mom's eyes.
People have been writing me to say that I've done all that I could have for Mom. In truth, all of those good folks should be sending that message to my father.
Our thanks to Mrs. Eleanor Landgrabe, my former French teacher, for having written an absolutely beautiful tribute to Mom. Mrs. Landgrabe stopped by our house a little after 7PM (her husband, Dr. Ed Hayes, was in the car) and handed my father a small hard-bound book filled mostly with blank pages-- blank except for the first five or six pages, on which Madame had left her eloquent letter, which was addressed directly to Mom.
Since the rest of the book is blank, we've decided to use it at the reception following the memorial service. Our hope is that Madame's message to Mom might inspire others to write their own messages therein. The book is small; we might need to add an extra binder (with lots of paper) for others to write their messages.
Our thanks to the people who have been visiting Mom in the ICU. We're sorry that visitors have had to see Mom in such a broken state, but we're glad they made the effort to be there. One thing I've learned over these months is the importance of being there in a crisis.
Also: a big thank-you to my brother David. On his iPhone, he had a heart-warming photo of Mom and Dad. During our family's talk with the medical personnel, David felt that our interlocutors needed to be reminded that Mom isn't just a sack of dying flesh or a jumble of graphs and numbers: she was and is a person, someone whom, in better times, they would have gotten to know and love. David's picture showed Mom as we had known her: standing with Dad, glowing with life, happy as a clam. I hope the doctor, the social worker, and the chaplain understood David's wordless message.
Over the months, we've seen many medical professionals cut Mom apart analytically, using the language of statistics to measure the progress of her cancer, the probability that a certain treatment might delay tumor enhancement, and so on. I'm not against such language; I've relied on it myself. But too often, we've seen how the language of numbers can, when overused, create a psychological distance that makes the entire therapeutic/treatment process feel cold. Worse, such language (and the thinking behind it) can blind the medical professionals to the tangible personal reality sitting before them-- the frail living being in her wheelchair who has no choice but to accept whatever pronouncements and decisions are made by those around her. Even some social workers operate according to discernible rhetorical formulae, asking questions that shepherd the conversation along predetermined lines of thought.
Mom was never a set of statistics; if she had been, her initial MRSA infection would have been anticipated; the same would have been true for her allergy to vancomycin and the uselessness of carboplatin. But at every turn, Mom's battle with cancer veered-- always in a negative way-- from the statistical path. Most GBM sufferers don't experience rapid tumor enhancement within eight weeks; Mom did, as we saw with her second mass. Most people don't suffer near-lethal post-operative MRSA infection; Mom did. Most GBM patients are men; Mom's not. In the end, Mom didn't even come close to enjoying the mean life expectancy of the typical GBM patient (13 months; Mom barely made it through eight-and-a-half months). Statistically speaking, Mom should still be quite alive and more or less functional, with several months of life ahead of her. But many of the docs saw her through the lens of their stats, and that explains, in part, the failure of their treatment methods.
All the same, the medical community deserves thanks for what help it could give Mom since last April. Like Dad and myself-- Mom's 24/7 caregivers-- the docs weren't able to work miracles. But they did what they could, and for that, we're grateful.
As always, we're thankful to our fellow congregants for their compassion, presence, and help. Food, cards, flowers, phone calls, a wheelchair ramp, snow shoveling-- you name it, it's been done for us, and every member of Mount Vernon Presbyterian Church deserves our unreserved thanks. Dad constantly shakes his head in amazement at the gifts we've been given by the good people around us.
And not just MVPC: Mom's Korean and non-Korean friends, whether from her women's society or from her office, have been a wonderful support as well. From these groups, too, we've seen tremendous generosity in the form of cards, gifts, visits, and all manner of expressions and tokens of love.
Mom's relatives also deserve thanks: they've visited us, they've doted on Mom, and they've read this blog and cried about the news of Mom's progress. I'm especially moved by my cousin Ji-hyae's framed set of two photos of Mom and the rest of us. I've stared and stared at those pictures, which make for a heartbreaking contrast with what's happening now.
I know I've forgotten dozens, maybe hundreds, of people in this post. I apologize. There have been times when I thought I should create a cute animation of scrolling text-- like the ending credits of a movie-- to which I could add names as needed. But I never got around to doing that, and I'm sorry. In private, I've done my best to thank people as I see them: every time we've received food or some other form of face-to-face help, and every time I've received emails from both friends and strangers who have somehow found this blog.
So I feel I need to cover all the bases. To all and sundry, then: thank you.
Our hearts haven't completely turned to ash yet. There's still some humor rattling around in there. On Tuesday night, we visited with Mom, then had a closed-door meeting with the on-duty doctor, the army chaplain, and the social worker to discuss end-of-life and post-mortem issues.
Afterward, we said our good-byes to Mom, and David suggested an outing at IHOP (for my foreign readers: IHOP is the pretentiously named International House of Pancakes-- as if the chain were popular in France or New Zealand or Korea). We went there and ordered shamelessly high-carb meals. David's meal, a cheesesteak, had too many onion rings on the side, so at the end of his meal, he decided to stack them and top them off with a square-cut piece of ham to create his own version of the ancient Korean observatory, Cheomseongdae. See below:
Inspired. And an indication that, even with death this close, our family remains unbroken.
Tuesday, January 5, 2010
We're not totally decided yet, but Mom's extubation will most likely occur this coming Thursday. We'll be leaving home around 7:30PM to be up to see Mom and to talk to the doctors about what they think. We'll base our decision on what we hear from the docs.
Our thanks to Pastor Jeri for sitting and talking with Dad, Sean, and me about What Happens Next. It's comforting to know that so many people are in our corner to help us with the coming transition in our lives. A lot of the things that I thought we'd have to worry about have turned out not to be a problem. As a family, we can focus primarily on the important things, knowing that a lot will be happening in the background on our behalf. For example: the church already has templates for memorial liturgies, so it's merely a matter of tweaking the liturgical format to fit our preferences. Pastor Jeri also provided us with information about a well-respected cremation service, so the disposition of Mom's remains is no longer an acute concern. And the memorial itself doesn't have to follow hard upon the heels of Mom's cremation (which will likely be a private affair), giving us time to plan and prep for the memorial service and the reception thereafter.
Right now, the most important thing is to set the date for Mom's extubation, then call the cremation service, which will coordinate with Walter Reed on the moving of Mom's body. With all of that accomplished, a date for memorial service can be set; mostly likely, it will occur on January 16, one day before Dad's 68th birthday.
I'll be sure to say more tonight once we've been to the hospital, but for the moment, January 7 and 16 are looking to be the important dates for both the family and the public. The 17th, Dad's birthday, will be important for different reasons, and that will most likely be a family affair.
I had no energy or motivation to do anything last night, but Dad was in his bedroom for hours, sifting through old photos and finding ones that merit scanning for the photo tribute.
Today, Pastor Jeri is coming by at noon-- presumably to talk about the memorial and other post-mortem concerns-- and I've got to get working on a eulogy, photo prep, and research on cremation options. As a veteran, Dad had thought about Arlington Cemetery, and although they'll cremate the spouse of a veteran for free (more precisely, on the taxpayer's dime), they require interment or, in the case of cremation, "inurnment." We sons have rejected the notion of burying Mom's ashes at Arlington Cemetery; our own preference is for no grave, but instead for a scattering of ashes in the places she found meaningful.
Much to be done. Not a lot of time to do it. You might say that there'll be time to work on these things after Mom dies, but I'm not sure I can guarantee my own sanity after that point. So I need to be working on my agenda now.
Monday, January 4, 2010
We're at the very end. Mom's cancer has completely taken over, her scalp is covered with open sores, and her lungs are filled with pneumonia. She isn't running a fever because her immune system has completely shut down: it has nothing left to give. Mom might go on a while with her ventilator, or she might pass away during the night. That's how fragile the situation is. "Hours or days," we were told; that's how long Mom has.
Within 48 to 72 hours, our family is going to have to make the decision to extubate Mom, removing the support of the ventilator. I've been warned that that's how such things go, and it appears we're the family next in line to experience this particular pain.
The doctor tells us that it's possible Mom might continue to breathe after extubation; it happens with some patients, and it's hard to predict how long the breathing might go on. He said that, if it appears she's breathing on her own for some time, she can be moved upstairs to a small hospice facility where she will be given palliative treatment so that she experiences neither anxiety nor discomfort as she fades away. Both the doctor and the social worker felt that the entire family should be there for extubation, an idea that we already agreed with.
So there will be no true hospice care of any kind for Mom-- no homebound hospice, nor an institutional hospice. In her current condition, she's too delicate to move anywhere. The ICU will be where she spends her last few days, and unless we as a family fly off the rails and somehow decide otherwise, Mom will be extubated this week.
That gives Mom's friends only a few days to make their pilgrimage to her side. If you're a friend, tell her goodbye, and say how much you love her and will miss her. If you feel like crying, then cry. If you feel like laughing, then laugh. Don't force yourself to act with fake cheer or bravado. Now is not a time for falseness.
Sean and I are at the parents' house; we left before Dad and David did, having taken some time to say preliminary goodbyes to Mom. When David and Dad arrive, we'll be discussing the next steps, and getting right to work on whatever needs to be done for a memorial service, for cremation, and for whatever other post-mortem duties await us.
[NB: If you haven't seen the IMPORTANT ANNOUNCEMENT, please do so.]
Dad was up much earlier than I was, and has been on the phone all day with various people-- friends and folks who know something about hospice arrangements.
According to Dad, it's not looking good for homebound hospice care. Some of the organizations providing such care want two to three weeks' notice before they can move equipment to a given house. Others are unable to provide ventilator-related services. Even with institutional hospices, there are hurdles. Moving Mom anywhere promises to be logistically and bureaucratically difficult.
So for now, Mom remains in the Walter Reed Army Medical Center ICU. We'll be seeing her soon; first, I need to hit the local post office to pick up two Christmas parcels. They would have arrived in time for Christmas, had it not been for the snowstorm.* Both are gifts for Dad.
Later today, I'll begin gathering photos for my project: the creation of visual tributes for Mom. Most likely, the blog will eventually link to a Flickr.com slide show with hundreds of scanned and digicam photos of her life. Those same data files will also be turned into a PowerPoint presentation that, with the proper digital projector, can be shown at any given venue. And finally, physical photos will be needed for a walk-by display-- something a bit more old-school for people who prefer their pictures to have some heft and reality to them, as opposed to being mere wispy photons.
There are other projects as well. Before I discuss the specifics of memorial service arrangements with my pastors, I need to run by several scenarios with Dad and my brothers. I already know that Mom wouldn't have wanted pageantry, but I also know that there were things in life that she loved, such as the classical music that both David and Sean provided through years of violin, viola, cello, and piano playing. (Sean has been a professional cellist for several years.) Such elements should be a proper part of Mom's memorial service.
Finally, I need to start working on a eulogy. I've gone back and forth on this idea: on one hand, a eulogy is a printed document that allows the emotionally distraught speaker to coast through his speech, using printed words as a crutch. On the other hand, a printed eulogy, one that's well-planned, allows the speaker to say everything he thinks should be said. The danger of speaking extemporaneously is that one might meander and become forgetful, so overwhelmed with directionless emotion that it becomes impossible to voice the most important things. No eulogy can ever do full justice to the person being eulogized, but every loved one who speaks on behalf of the dead has an obligation to honor that person as well as possible.
Of course, there's no real "right" or "wrong" way to approach eulogies. You go with what works for you. For me, I suspect a written speech will be best. But I may change my mind.
Those are our projects, both for today and the days to come.
*Whatever happened to "Neither snow nor rain nor heat nor gloom of night stays these couriers from the swift completion of their appointed rounds" (see here)?
We are now at a stage where Mom is never going to wake up. Her dependence on her ventilator remains the same as when she was first admitted into the ER at New York Presbyterian Medical Center. Since that night, she has shown no obvious signs that she is interacting with the world anymore. Her body still lives, but as my buddy Mike phrased it, "much of what makes Mom herself has already passed."
We are, therefore, no longer concerned about whether the unexpected presence of visitors might stress Mom. I had, for many months, done my best to defend Mom from all manner of well-intended but clumsy gestures, chief of which was the tendency of some people to try to visit her unannounced. Not only was this disrespectful of our repeatedly stated wishes, it was also very stressful for Mom who, at the beginning of this ordeal, often wanted to disappear instead of being seen. It was primarily Mom's stress that motivated me to set boundaries. Now, however, those boundaries no longer matter.
So the new visitation policy for Mom is simple: if you want to see her and pay your respects before she passes away, if you want to touch her or kiss her or hold her hand one last time, NOW IS THE TIME TO VISIT HER.
Some people have trouble visiting with the dying and/or the loved ones of the dying. Such people feel they won't know what to say, or they're afraid they might burst into uncontrollable tears. Believe me, I've been there, and I'm here to tell you that such worries are rooted in one's own ego. Don't worry about how you'll look and act in front of Mom or us. Those are mere externals-- superficial by nature. If you pass up the opportunity to see Mom merely because you're worried about yourself, then you'll kick yourself later, after she's gone, for not having had the courage to see her one last time. "Goodbye," done face to face, brings a kind of closure that avoidance never can.
Other people may feel that my often-prickly defense of Mom's dignity and tranquility-- especially when it came to my resentment at unannounced visits and my rejection of bogus "cures" proffered by some-- was a sign that I simply didn't want such people around. Not true. All I was doing was enforcing the clear boundaries I had set up. On this blog, during Mom's long period of suffering, I have repeatedly preached the gospel of realism: hope, but not false hope; mindfulness, but not fantasy. Some people, still in denial, tried to offer us superstitious or pseudo-scientific remedies that had nothing to do with Mom's cancer. I, like Mom, am not disposed to suffering fools gladly, so I tended to reject such "kindnesses" rather brusquely and directly. Hogwash by any other name is still hogwash, and even when the potions and spells were offered with kind intentions, I didn't look kindly upon them.
But the rejection of hogwash isn't the rejection of the whole person. We're all capable of saying and doing nonsensical things, and we'll often do such things at exactly the wrong time. For me, if you make a single mistake, you're not persona non grata. If I held everyone to such a strict standard, I'd be a hypocrite, since I myself say and do ridiculous things (more often than I care to admit).
That said, I don't regret the stance I've taken in defending Mom from the slings and arrows of well-intended silliness. Not one bit. I'd do it again. But if you're one of the people who feel stung by my defense of Mom, then-- as is true of the person who's worried about how he'll feel or act when he sees Mom-- I'd suggest putting ego aside. Forget about me; go be with her.
So that's where we are now. Mom is getting ready to leave us, and now is the time for everyone to say their final goodbyes. If you're unable to make the trip to be by her side, I understand. But if you're holding back from visiting Mom for reasons of pride or ego, then you should let those childish notions go and just see her. She doesn't have much time, which means you don't have much time.
Mom's current location (check this blog for updates if/when she's moved either to an institutional hospice or back to our house for homebound hospice):
Walter Reed Medical Center
Building 2, Ward 40, Bed 7
According to the ICU staff we met, Mom is accessible 24 hours a day. There's some debate as to whether there's a limit to the number of people who can be inside her berth at any given time, but we had three visitors at Bed 7 on Sunday: David, Dad, and me.
Depending on when you show up, you might see some or all of our family there. Mom needs your love, but we guys could probably use a few hugs, too. I hope that's not too forward of a request, especially after the above stern, finger-wagging lecture.
For me, Sunday meant waking up late after a decent night's sleep. Two friends and fellow congregants from our church, Mr. and Mrs. Doe, arrived at our door with food: a hearty soup, Italian bread, a salad mix, and cookies. Our thanks to the Does, whose food we ate (along with the food from Mrs. Burns and the Morrisons) later in the day for dinner. I regret not seeing our guests: I was downstairs, probably showering. Dad was the one who greeted them.
Our goal for the day was to see Mom, so Dad and I shoved off around 2PM. I had nearly emptied the van's gas tank after (1) driving home from New York, then (2) driving back into DC to pick Dad up. Before Dad and I struck out for Walter Reed Medical Center, we drove to Fort Belvoir to gas the van up (gas is usually about 20-30 cents cheaper on base). On the way to DC, we picked my brother David up, and once we got to the medical center, we saw that Sean was there. Sean left soon after our arrival.
Mom's new ICU berth proved to be larger than I thought. I had imagined something cramped, slightly bigger than a closet, in but fact there was enough room for three visitors (plus a doctor) to sit or stand in relative comfort. Mom's room was comfortably dark when we went in. Her poor eyes remained swollen; we were told that she was still receiving regular applications of petroleum-based ointment to reduce irritation and protect the eyes from over-exposure, and we saw for ourselves that, unlike in New York, someone had attempted to tape Mom's eyelids shut. The attempt had been only partially successful; Mom's right eye in particular has now become so swollen that it will probably never completely close again. A nurse came in to re-apply ointment and re-tape Mom's eyes; he, too, was unable to close the right one completely.
Mom herself was as still as death, but her hands remained warm. More to comfort myself than to comfort her, I again sat beside Mom and placed her left hand on top of mine, allowing her inherent warmth to radiate into me. For a while, I could fool myself into thinking that she had placed her hand there-- that it was her will, not merely the pressure of gravity, that kept her hand where it was.
Mom's vital signs were bizarrely good, though: heart rate 114 (high, but better than 140), blood pressure 122/58 (MAP = 78), pulse-ox 100 (David noted that, with the ventilator set for 80% oxygen, Mom might have been over-oxygenated; a respiratory tech later adjusted the machine downward), and best of all, respiration at 16 breaths per minute-- the lowest and calmest rate I had yet seen.
But Mom's serenity and her tranquil vital signs belied the fact that the top of her head had begun to look like the surface of a world that had suffered a global war. The tumor that had begun to rise through the hole in her skull was even more prominent, and red blotches, patches, and blisters were making their way from the top of her head down the left side of her face. Several things seemed to be happening at once: infection, lingering irritation from all those days spent with the helmet on, belated effects from radiation and chemotherapy, and possible enhancement of the tumor in new spots on her scalp. Even the nurse was unsure how to read all the signs, but on a gut level, I knew they meant nothing good.
The ICU is already viewing Mom as a palliative case: they're doing what they can to make her comfortable, but they're not giving her antibiotics or doing anything to prolong her suffering. Both her infections and her cancer are, I suppose, free to work their work on her, and it seems to me that we are, at long last, nearing the end. This is no longer a struggle or a battle with cancer; cancer and the germs have won, and we are merely witnessing the mopping-up.
Dad was, once again, in and out of the berth as he went about gathering information. He wanted to track down the social worker so he could talk with her about hospice options, but it was Sunday, so the social worker wasn't there. Dad did manage to take down some crucial phone numbers; he'll be calling people in the morning, and his hope is to have Mom scheduled to go somewhere-- home or to an institutional hospice-- by the close of business on Monday. Mom's actual move, if Dad is successful in finding and securing a hospice arrangement, will likely occur later in the week.
Dad had also brought along a pile of Christmas cards from various friends. He read the handwritten messages in the cards to Mom, asking me to decipher the Korean messages as best I could. One of Mom's old friends had knitted her a scarf. Mom will never wear it, but David took the scarf and drew it along Mom's right hand, allowing her to feel it.
Throughout our nearly three hours at the ICU, I did little but sit by Mom's side with my hand nestled under hers. Sometimes I shifted position and held her hand. Sometimes I stroked it. My brain didn't know how to reconcile Mom's organic warmth with her corporeal inertness. And the more I thought about it, the more I came to believe that Mom had already left us on the night between December 21 and 22. She had been there, in the office, to hear the death sentence handed to her by Dr. Boockvar from wherever he was in Florida; she had seen the crestfallen looks on Dad's face and mine, and later that evening, she had sat silently in her wheelchair, between spoonfuls of soup, and stared at me as I both sobbed my apologies to her for not having been able to do more, and begged her forgiveness for all my failings as a son.
That, I increasingly believe, is when Mom concluded it was time to look skyward and hitch a ride with the wind. There really was nothing more for anyone to do. With no hope from any medical corner, and with the cancer and the pneumonia raging within her, she may have decided-- at a primal, cellular level-- to stop fighting. For her family's sake.
But after spending eight months by her side, after following her bodily rhythms and feeding her meal after meal, after exchanging ten thousand hugs and going on who-knows-how-many walks in the local park, I feel almost telepathically linked to Mom. Her shutdown is now my shutdown, too. She's dying, and my heart is withering. As I wrote to my buddy Mike, I fervently wish I could magically take all Mom's cancer into myself and perish in her place. If such magic were possible, I'd use it gladly, no matter the cost to me. But that's never going to happen, and I feel there's no longer anything I can do except watch my mother die. When we left, I whispered to Mom what I had told her before in the New York ICU: "You can go anytime you want. It's OK." That was a lie, though: I don't want her to leave when I'm not there to see her off.
We three drove home-- Dad, David, and I. We had tested one route on the way up to Walter Reed; it struck us as rather long and out-of-the-way. The more direct route, which we took in the evening, seemed much shorter, but it also took us through the heart of DC, i.e., through a gauntlet of traffic lights. On a Sunday evening, though, the lights weren't a huge problem; we moved along at a good clip.
The ride back home was quiet. We dropped David at his place so he could pick up his own car and drive separately to our house. Dinner was "every man for himself," a smorgasbord of victuals prepared by others... and perhaps a harbinger of dinners to come as we lose, forever, Mom's savvy feminine touch at mealtimes. The rest of our evening was, as you might imagine, similarly quiet.