Mom's still fighting the ventilator, but today the interpretation of her actions isn't so positive. Instead of viewing this as her attempt to wean herself off the machine, the docs today seem to think that Mom's overly rapid breathing, possibly motivated by so-called "air hunger," is a response either to the cancer in her brain, which may be forcing her into this pattern of respiration, or to the infection in her body.
The docs are adjusting meds and Mom's position on the bed in order to provide her maximum comfort-- all this in an effort to relieve whatever stresses are elevating her blood pressure and making her breathe so fast. They've once again increased her fentanyl (pain medication), and have administered a diuretic to help her expel the fluids currently swelling her body. Mom's been swollen since she entered the ICU: the docs had hooked her up to a lot of saline solution to try to rehydrate her.
Mom's lungs contain a good bit of pus; suctioning brings up large quantities of dark, sometimes bloody material. Her eyes were halfway open when we arrived, and her tear ducts began bleeding while we were there. Although she's been periodically receiving drops, this hasn't been enough to stop dryness and irritation, hence the bleeding. The nurses have cleaned Mom up and have administered a new type of eye drop, one with petroleum in it, so that the drops will coat Mom's eyes and protect them longer. I asked one nurse why no one had considered taping Mom's eyes shut to protect them. She replied that one major reason was that Mom's eyes were her only means of communication, now, and it wouldn't be right to take that away. I don't quite buy that explanation; if the docs need to see Mom's eyes during a procedure, they can simply un-tape or uncover them.
Mom's condition today doesn't give me much hope that she'll be leaving New York anytime soon, if ever. There's a good chance that she's "septic again," as one doc put it. With the chemical cocktail that's been coursing through Mom's body for months, Mom's immune system has been devastated, and she's now vulnerable to just about any opportunistic infection.
Not knowing quite what else to do, I'm now off to get a much-needed haircut. After that, I'll begin prepping dinner.
UPDATE: The salon is closed, but will be open Monday. It's rainy outside, and I have no desire to find another salon (even though I saw several up the street during my long walk up York Avenue in early December). Monday, then: the shagginess will end.
Saturday, December 26, 2009
Mom's still fighting the ventilator, but today the interpretation of her actions isn't so positive. Instead of viewing this as her attempt to wean herself off the machine, the docs today seem to think that Mom's overly rapid breathing, possibly motivated by so-called "air hunger," is a response either to the cancer in her brain, which may be forcing her into this pattern of respiration, or to the infection in her body.
The ICU doesn't want visitors between 8AM and noon, so we're heading out now to see Mom. I've reached a point where I badly need a haircut, so that's on the agenda for today, too. Luckily, there's a unisex salon not even a block from where we are; getting shorn shouldn't be a problem.
More later on how Mom is doing.
We four guys walked over to an Italian restaurant called Nino's, which turned out to be something of a disappointment. A dessert run to Cafe Luka, where Dad and David got their cheesecakes and Sean and I got chocolate mousse cakes (Sean had decided to abandon Dr. Atkins for Christmas), did much to relieve that disappointment.
We went back to the hotel, ate dessert and lounged around for a bit, then headed over to the hospital around 10:30PM. We stayed until midnight, holding Mom's hands, twiggling her toes with our fingers, and talking to each other.
Part of our conversation was about what was to happen next. With Mom still unable to breathe on her own and with the cancer multiplying ever faster inside her head, what were our options? Ultimately, we decided to do a bit more research into clinical trials-- at New York Presbyterian (since we're here already), or at Johns Hopkins, or at Duke University, or at M.D. Anderson in Houston. We decided to look for glioblastoma trials geared toward treating people near the end stages of the cancer, and agreed that it would be best not to get our hopes up. We knew we would have to work quickly; because the cancer is now so pervasive inside Mom's brain, the recent MRI will probably be out of date within a week-- no longer an accurate representation of the current state of the cancer.
We also agreed that we wouldn't subject Mom to trials that were overly invasive, i.e., requiring surgery or a large number of incisions. As we decided long ago, Mom's comfort and quality of life would always be paramount.
After a while, I had to ask, "Is all this crazy talk?" Dad's reply didn't exactly address my question. He said, "An outside observer might call this 'quiet desperation.'" He may have been right.
Whatever we decide to do, it will always be with an eye to Mom's comfort, happiness. If that ultimately means letting her go, then so be it. But right now, we all feel somehow raw about our experience here in New York, as if a solution had been dangled before us, then arbitrarily whisked away. As I told my family, a cynical part of me wonders whether Dr. Boockvar decided not to accept Mom because he wanted to preserve a perfect track record. He had, after all, initially allowed Mom into the trial by fudging her Karnofsky performance score-- giving her a 60 instead of a more truthful 40. That was the first week of December. He backed down later, a few days ago, upon reviewing her latest MRI and hearing reports about Mom's alertness and responsiveness. That same day, Mom succumbed to massive infection, almost as if she had understood, from Dad's and my faces, that no hope was left, and that it was time to give up.
Of course, I don't know Dr. Boockvar, and don't have the right to condemn him without knowing more about him and his methods. To be fair, I have to concede that a clinical trial needs to be tightly run so as to produce meaningful data, which is why such trials have very narrow and rigid entrance criteria. All of the other patients in the trial are (or rather, were) less critical than Mom before their own intra-arterial Avastin treatments. In Mom's case, the spread of the cancer-- including the now-visible tumor that, by all rights, needs to be resected-- would have made surgery extremely dangerous. Mom's body is so full of chemotherapeutic agents like Avastin and carboplatin that incisions would probably bleed profusely, and wounds would both heal slowly and be subject to serious infection.
As so many people have said before about Mom's situation: it doesn't seem fair. For the moment, I'd settle for having Mom wake up for a day, recognize us for who we are, and offer us each a glowing smile. But now, as things are, even that may be too much to ask. Mom's on her ventilator, and according to the docs, she may be on it for days, or weeks, or forever. Although her signs are slowly creeping toward the positive, it's a race between her recovery from infection and the continuing ravages of her cancer.
It was, by most measures, the worst Christmas a person could have experienced. We weren't delusional enough to expect a good and happy Christmas, but we did what we could, in our humble way, to make it just a tiny bit better for Mom. Our own misery is nothing. Mom's happiness is everything.
Friday, December 25, 2009
My thanks to my brother Sean for providing a few minutes of beautiful music for Mom, and for the ICU (staffers requested an encore, so Sean played one more tune).
Mom was actually in pain before Sean began; David had texted me to say that Mom was waking up and reactive to the environment, even tracking movement with her eyes. As it turned out, Mom's wakefulness was a sign that she was in pain: her anti-pain medication had been reduced a while before, and she was starting to feel the effect of all the tubes, needles, and treatments.
A doctor later noted, however, that Mom's reaction was a good thing: it meant that she was still connected to the world, and not moving in a comatose direction.
We guys are off to a quiet Christmas dinner at a nearby restaurant called Nino's. I feel guilty that Mom can't be there to join us, but I'll try to think of this dinner as similar to past Christmases in which one or more family members were missing (such as when I was living in Korea or Europe, or when Sean was living in Canada).
My thanks to all the people who tried, from last night through this morning, to see about procuring a cello. In the end, Sean's musician friend Carolyn (I hope I'm spelling that right) came through and found Sean a good cello in a protective carrying case that looks like the fuselage of a Stealth fighter. Carolyn, you rock.
Sean spent some time running through memorized tunes while at the hotel, and now he's setting up at the ICU. I'm at the hotel to procure my digicam so we can have some photos to mark the event. Not sure whether I'll blog them; I might blog one or two, simply because it's Christmas, and not a typical Christmas, either.
Thank you all.
Oh, yes: Mom reacted to my presence today when I took her hand. David and Dad were already there, and they said that that reaction was the strongest one they'd yet seen. Later on, Mom seemed to move one of her legs. She's been taken off a lot of the IV bags she'd had, but is still on the ventilator. However, her dependence on the ventilator continues to lessen, which is very good news. The docs seem firmer that Mom's main infection is MRSA (so David told me), and they also said that Mom has a bladder infection, possibly related to the constant use of diapers.
More on Mom later. I've got a concert to go to.
I'm not sure how to describe what it was like, on this cold winter's night, to walk alone into the ICU, to don gloves and a gown, to step into Mom's berth, hold her hand, and wish her a merry Christmas. There were tears, there was silence, and outside the window, there was the shadowy East River to remind us of life's constant flow, the erosion that comes with impermanence.
I cleared my sadness-tightened throat and told Mom a few religious stories. First was the Jesus story, since this was Christmas. Ever the pedant, though, I followed that with the story of the Buddha's birth and eventual enlightenment. Finally, I ended with the story about Jang Ja (the Sino-Korean rendering of Chuang-tzu, one of the fathers of philosophical Taoism) and the famous "jeweled turtle shell" incident that ends with Jang Ja barking, "Let me drag my tail in the mud, then!" Maybe I should have added the story about Bodhidharma and his nine-year meditation, but since the legend says he ripped off his eyelids so as not to fall asleep (the lids hit the ground and sprung up as tea plants, which is how tea came to China), I decided to avoid the really gross stuff. I ended by noting that the great religious traditions all deal, each in their own way, with the issues of bondage and liberation. I told Mom, as I had before, that it was OK if she wanted to be free of her suffering; it was OK to leave early.
Mom was the best audience a guy could have: silent and receptive. I had no idea whether she really heard anything I was saying. She certainly wasn't reacting. But I talked all the same. I asked her what the hell we were going to do once she was gone. I promised that I would try to live a happy and fulfilling life, and make others happy as well. I told her not to worry, that we four guys-- Dad and us boys-- were going to be all right, and that that was thanks to her love and care. I told her she was the center of our world and that, just as Scrooge promised to keep Christmas in his heart all the days of the year, I would keep her in my heart, every day, forever.
And even though I had intended to spend only a few minutes with her-- just the time to herald the arrival of Christmas-- I straightened up to leave and found that I just couldn't go. I couldn't. Mom looked so alone there, all by herself next to a huge, dark window. Departure felt like abandonment. So I sat with her for about an hour, holding her swollen hand, stroking her face, wishing I could see some spark of life in her. In the end, though, there was nothing: just the machine going through the motions of artificial respiration, and the whites of Mom's eyes poking out from beneath her partly-opened lids.
Time passed; I finally got up and made ready to leave.
"Be at peace, Mom," I said. "Merry Christmas. I'll see you soon."
I left her there, alone, so tiny and vulnerable in her bed, next to a window through which stared the spectral night. I left her there, alone, to fight the cancer in her skull, the infection in her lungs, and the rest of that vile symphony of bad biological news.
I left her there, feeling as if I had abandoned her.
Merry Christmas, Mom.
People who've had a chance to read my book might not be comforted by my theological point of view, which veered away from classical theism (and any hint of scriptural literalism) long, long ago. If you haven't read the book, a few posts on this blog might give you some hint of where I stand. The insights won't necessarily be reassuring, and if you disagree with them, that's fine. Vive la différence!
Your religious point of view is the most fundamental point of view you have; as such, it's safe to say that logic alone doesn't inform it: it is, instead, a reflection of a deep and primal orientation toward the world and ultimate reality, only retroactively supported by logic. Even atheists have this point of view, though they won't style it "religious," per se: they, too, have some sense of their relationship with reality, and of what reality is. But more important, because the religious point of view is so basic to the human character, it's almost impossible to alter through argument.
My point? Well, my point is simple: some people get nervous when they start reading about other people's religious points of view, but really, they shouldn't. If they have confidence in their convictions, they can face any new perspective without fear. Then again, if they haven't bothered to reflect on their own perspective... maybe they'll be seduced to the dark side. And that would serve them right! Unreflective faith is blind faith, and blind faith is a source of so much of the world's trouble. As my mother used to say when I was a kid-- and this is the only theological utterance she's ever made-- "God gave you a brain!" (This theology was usually uttered in anger or disgust, but it has a wider application than the mere scolding of youthful stupidity. It's great that we are feeling beings, but we also need to think. Catholics, at least since 1998, use the Latin formulation fides et ratio (faith and reason) to encapsulate the marriage of heart and head in the face of the Absolute; East Asia encapsulates it in the Chinese character 心, pronounced "shim" in Korean, "hsin" in Chinese, and "shin" in Japanese-- which means both mind and heart.)
Without further ado, then-- religion-related posts for Christmas (read at your own risk):
1. On petitionary prayer
2. On miracles-- starting with the fourth paragraph
3. On the claim that "The Christmas tree is a pagan symbol!"
4. On that horrible, horrible exclamation, "Merry Christmas!"
5. On mixing and matching religions-- a comment that I left over at my buddy Mike's blog, which he saw fit to highlight as a separate post.
For those who don't know the slang: blog + beg(ging) = bleg(ging). A "bleg" is a blogged request for something free-- something normally rented or bought.
This particular bleg comes very late, but that's because, in the midst of our Sturm und Drang, the idea didn't come to us until Christmas Eve.
We'd like to know whether anyone local to NYC might have a decent-sounding cello that my brother Sean, a professional cellist, could borrow for the day, so that he might play some music for Mom, and possibly for the entire "5 South" section of the intensive care ward.
Anyone got a cello? Anyone know anyone in the music biz who'd be willing to lend a cello for Christmas, on very short notice? If so, leave a comment right on this blog post. That'll be faster than emailing me. If you can't figure out the comment system, then fine-- email me. As I've noted before, place "Kevin" in the subject line of your email, otherwise I'll have to search through my trash folder to find it.
Thanks in advance.
Thursday, December 24, 2009
David and I went over to see Mom around 1PM, and stayed until about 3:30PM, which is when the cleaning lady came by to usher us out: she had to take care of the floor. I'm impressed with the overall efficiency of this hospital's ICU; like Fairfax Hospital's ICU, staffers seem to be very attentive and communicative, both with us and with each other. Mom is constantly monitored, and as was true in Virginia, her berth sits right across from some of the desk workers. Should an emergency arise, help will be seconds away.
Mom's condition continues to progress in "baby steps," as Dad calls it. She's nowhere near ready for transport down to Virginia, but some of her stats show discernible signs of improvement. We're all hoping this upward trend will continue, but we have no idea how long it will take before Mom is ready to move-- or whether her continued confinement to bed might make her susceptible to nosocomial (i.e., in-hospital) infection, or to other problems associated with lying in one place for a long time.
Dr. Berlin saw us when David and I arrived; Dad was already there. He said that, although all the cultures aren't back yet, initial results from Mom's sputum seem to indicate the return of MRSA, which can cause, among other things, pneumonia. Dr. Berlin was at pains to point out, however, that because no one has taken any deep samples from Mom's lungs, it's currently impossible to know whether the fundamental problem is MRSA or some other pathogen. Once the docs have a better idea of what's happening, they'll focus their antibiotic efforts more tightly: wide-spectrum treatment can catch a variety of microorganisms, but the cumulative effect of such a bombardment can lead to nasty side effects. No yang without yin.
Mom herself seemed as calm and out of it as she had been last night. Her eyelids were once again cracked slightly open; David tried closing them, but they refused to stay shut.
I mentioned to Dr. Berlin that Mom had had a white node in the middle of a red patch on the top of her head; he removed Mom's helmet to check the spot, and saw that it had turned dark and crusty: it had become a scab, suggesting that it had popped and run. He didn't seem definite as to whether that scab was evidence of more MRSA from the old surgical site. But what's interesting was that, when Dr. Berlin started removing Mom's helmet, she reflexively opened her eyes despite the sedative coursing through her body. Once her helmet was back in place, her eyes closed again.
I have no reason to suspect that what I was seeing was an example of sudden awareness of the environment; more likely, Mom's eyes opened because it was her head that was being moved. Later on, she remained perfectly still when a nurse came in and gave her an injection in her upper arm. Had Mom been truly conscious, she would definitely have reacted. Even though she was a seamstress for many years, Mom and medical needles have never gotten along.
So there's not much more I can report about Mom's progress, if "progress" is le mot juste. In effect, she's still being stabilized. Were she unplugged from even a single aspect of the care she's currently receiving, she would utterly crash. Luckily, every measure is in place, so things remain tenuous but stable, and there are tantalizing glimmers of improvement. Whether those glimmers point to more substantial improvement is hard to say.
The guys are all napping right now. I'm about to head out and shop for some needed household items. I then plan to go back out for a bit of Wi-Fi-powered "me" time since I have a few emails that need to be written. Dinner for the family can probably take care of itself; I've cooked plenty of food at this point-- almost none of which poor Sean can eat, since it isn't Atkins-friendly-- but David and Dad can dine on leftover spaghetti or choucroute alsacienne or any of a number of Korean soups that had originally been meant for Mom.
Our thanks to Pastor Kim and family, Pastor Jeri, and Melinda Mason for sending us an edible bouquet. It was perfect timing: we were running low on fruit. Because the hotel fridge is still stocked with the items I've brought over and cooked, the fridge didn't have room for the bouquet in its original form. My brother David took it upon himself to disassemble the bouquet and bag up the fruit in more manageable portions.
On behalf of our family, I'd like to thank everyone who has helped us during our trial. Whether you've given us money or food or cards or emails or some other form of comfort, we thank you.
Yes, we even thank some of the creepy ajummas who have insisted on ignoring our repeated requests to call 24 hours in advance before visiting us-- some of whom have even tried barging into our house after knocking on our door, too impatient to wait for us to come to the door and answer. While such behavior has added to our stress, not lessened it, we understand that the intentions behind the behavior have been good. [NB: the majority of the ajummas who have visited us have been much more scrupulous, so I hope no one thinks I'm casting aspersions on all ajummas everywhere. In point of fact, most of the ajummas guilty of the behavior I'm talking about don't even bother to read this blog-- and not for lack of English skills.]
We've received a lot of love from all corners, including right here in New York. Our thanks go out to the New Yorkers who have offered us cheap alternatives to staying at our current digs. We haven't taken you up on your offers yet, mainly because we've already extended our stay to Saturday, and because the Helmsley Medical Tower sits right next to New York Presbyterian Hospital. Mom is just a quick walk away, and that fact is precious to us.
I wasn't there for it, but based on what I heard from Dad and my aunt, Mom had a great time at the Washington Korean Women's Society Christmas gala. It lifted her spirits to see so many friends, coming to her in wave after wave of love. Dad is the one who had felt that attending the party would be beneficial to Mom; I had been less optimistic. Hats off to Dad, then, for following his gut and allowing Mom to experience an evening overflowing with joy.
So many people have played a role in Mom's care, each person doing something special. Whether the gestures were gracefully performed or hopelessly gauche, we appreciate the love and concern motivating each and every person who has felt moved to do something for Mom and for the rest of our family.
To all of you I say: Thank You and Merry Christmas. We haven't done any of the things we'd have liked to do this year: set up our tree, decorate our home, prepare gifts and cakes and cookies, mail out a barrage of cards and letters, drive over to nearby friends' houses with gifts. This isn't the Christmas we imagined we'd be having-- even as recently as two weeks ago, we had thought we could manage some sort of quasi-Christmas-ish celebration, with Mom on her way to a temporary recovery thanks to the Avastin that would have been busily shrinking her tumors. But that was not to be. For that reason among others, we rely even more strongly on the kindness and goodwill of our circles of care during this, our sadly silent night.
Wednesday, December 23, 2009
Mom's receiving a blood transfusion. It's supposed to take about two hours.
UPDATE, 1:02AM, Christmas Eve 2009: I spent two hours with Mom, alone, holding her hand. She had an air blanket on top of her to keep her warm, and it was working: her hands were again as warm as they had been two visits ago.
I took my sweet time visiting Mom this evening. Dad and David were there first, and they're the ones who briefed me about her transfusion via text. When I did finally get to the hospital, Sean was there; he left soon after I got to Mom's side.
Mom is now even less dependent on her ventilator, but she still needs it to breathe. Her stomach isn't absorbing nutrients as efficiently as it should, and her heart, despite a rate of 86 beats per minute, isn't pumping blood as strongly as we'd like. Different bodily signs are pointing in different directions. It's hard to know whether Mom is making any real progress.
Her hand remained limp when I held it. I started off by her right side, then moved over to her left. Mom's left hand was, I discovered, subject to random, slight twitching motions-- nothing in tandem with the environment. I squeezed her hand several times throughout my two hours with her, hoping she might react, but she never responded.
The nurse came in twice while I was there; at one point, she checked Mom's pupillary reactions and deemed them "sluggish," noting that Mom's pupils had been that way when she was first admitted to the ER. I also asked why the doctors weren't giving Mom a vitamin drip instead of trying to deliver liquid food esophageally. The nurse dodged the question, saying that they were giving her drugs that ought to help her stomach absorb nutrition better. Maybe they need to check the performance of Mom's stomach-- something that would be harder to do were Mom receiving her nutrients intravenously.
The nurse did provoke one reaction from Mom, however: it happened when the nurse inserted a small, moist, green sponge-on-a-suction-stick inside Mom's mouth. I was holding Mom's left hand at the moment the sponge went in; it simultaneously cleaned Mom's mouth and sucked out any loose debris, and that's when I felt Mom's entire arm give a tiny jerk-- most definitely a reaction to the nurse's ministrations. Get that thing out of my mouth.
I also saw that the hospital staff was taking better care of Mom's eyes. On my previous visit, I was saddened and discomfited to see that her eyes were closed, but her left eye was ever so slightly cracked open, leaving her rolling iris visible. The effect was disconcerting, and at the time, I spoke to a nurse about it. She said they would give her periodic drips to prevent any dryness. Tonight, I saw that no such measures were necessary: Mom's eyes, both of them, were serenely closed.
My two hours came and went quickly. Time passes whether we want it to or not. I squeezed Mom's hand one last time, told I'd be back tomorrow, and asked her to sleep well. Here's hoping we get no emergency phone call during the night.
We went out last night to Cafe Luka, a restaurant that has treated us pretty well during our two stays in New York City. I still have a ton of food to use up, so I've whipped up a makeshift choucroute alsacienne that we'll be eating around 6:30PM (it's in the oven now). Sean won't be joining us: one of his former high school teachers is on her way over; she'll stop for a bit to say hi, and then she and Sean will go out for dinner, New York style.
After dinner, we'll head back over to the hospital to see Mom. Dad's been out walking for while, and he's already been to the ICU. Nothing new to report, according to him.
Mom may be showing ever-so-slight improvement in her condition; her need for the ventilator is still acute, but lessening. She still has a host of systemic problems, though, so don't read too much into the word "improvement." The docs still say that taking Mom down south at this juncture would be nearly impossible, given her condition. No bacterial culture results yet, so we don't know what type of pneumonia, etc., we're looking at.
Dad and David visited the ICU before Sean and I did. When I got there, I saw Mom looking about the same as she had yesterday. Her hands were colder than they had been last night, with the right hand slightly colder than the left. I noted this to Dr. Berlin when he came by, and he said this temperature difference might be indicative of a flow problem with one of the IV attachments in Mom's right arm.
There were chairs in Mom's berth today. After spending some time sitting against the wall, I pulled my chair over to her bedside and held her hand, hoping to warm it up with my own. Some nurses came in to check IV flow; they decided to roll Mom slightly to her left because she seemed to respond better to treatment while on her left side. They asked us to leave the room while they performed the roll, so we left, electing to go back to the hotel room to eat lunch.
Our thanks to the many people who have written in with offers of places to stay. A special note of thanks to my brother David's employer, Hager Sharp, for having sent us a lovely gift basket that arrived in front of Mom's ICU berth.
We'll be going back to see Mom again soon. More updates later.
We're awake, but the ICU prefers not to have visitors between 8AM and noon because of doctors' rounds, so we're hanging here at the guest facility. Correction: three of us are hanging here. Sean went out to buy some more clothing; he had originally intended to be here one day to support Mom during her much-hoped-for operation. That hasn't happened, yet we all find ourselves still in New York. Sean was also cold last night, so he's looking to find clothing to keep him warm while he sleeps. I've had no problem in that department: I sleep on the floor, on a thin foam pad under my sleeping bag-- the same one I was using during my trans-American walk-- and that keeps me plenty warm.
Once we go over to see Mom, we'll have more to say. As far as I know, there were no phone calls during the night. Perhaps that means there was no significant change in Mom's status.
While doing some desultory online searching last night, I found a French-language song, "Je t'aime, Maman" ("I love you, Mom") that pretty much captures the feeling a child has for his or her mother. Except for a gender-specific line or two (the song was written by a woman), I found that the lyrics resonated in me. See here, if you read French. Perhaps I'll translate the lyrics at some point if people want a translation.
I've come back from seeing Mom. She doesn't look any different from how she looked when I saw her earlier. She's still in her bed in the ICU, silent and small, a fragile woman wearing her protective helmet the way a child might clutch a precious toy. Her blood pressure's relatively low right now: about 105/50 when I was there. Her heart rate is too rapid: about 135 beats per minute. As before, she lies at the center of a mass of tubes and wires, including a ventilator that does her breathing for her.
No one else was in the room when I arrived, so I talked to Mom. I told her, once again, how sorry I was about everything. I told her I was sorry that we weren't able to do more for her. And I gave her permission to do as she pleased: "We want you to come home with us to Virginia, but if you want to leave us sooner than that, that's OK. Be at peace, Mom." I held Mom's hand, which was limp from sedation and swollen-- like her face-- from a massive intravenous push. It was strange to hold her hand, which was paradoxically limp, yet warm and alive. The sensation was too much: I cried a bit. Crying can't be helped these days; I'm always holding back tears no matter where I go or what I do; they're going to leak out at some point.
Before I left the ICU, a nurse came into the berth and began tending to Mom. I remarked about Mom's high pulse and low blood pressure; the nurse agreed that Mom's pulse was far too high, but she said that her blood pressure wasn't bad.
As I made my way out to the East 68th Street exit, I noticed an alcove with a humble chapel tucked into it. I haven't been a praying man in decades, and I wasn't about to pray this time, but I ducked into the chapel just the same, hoping there'd be no one there, so I could sit in silence for a brief while. That proved to be the right thing to do: the quiet was calming; my thoughts had a chance to settle. So I sat-- just sat.
And then I came back to the hotel, where all the guys have been asleep for some time. I don't know how peacefully they're sleeping, but if they're like me, depression may be as good a soporific as alcohol.
Whatever happens over the next few days, I don't want Mom to suffer. I don't want her yanked back from the brink of death merely to endure more invasive treatments and other unnecessarily life-prolonging measures. Would Mom herself want to live through more of this? I doubt it. Intellectually if not emotionally, I'm willing to let her go, to set her free. God knows she's suffered enough.
And that's why I told her she could leave anytime she wants. We want her back in Virginia for reasons that may have something to do with Mom, but which have more to do with our own desire to see Mom pass away in a certain setting. At this point, with Mom's consciousness both buried under a pile of sedative and torn apart by rampant cancer, I doubt she knows or cares where she is. Reality rarely fits our desired picture of it; accepting this fact is part of life. For us, this means accepting the possibility that the final chapter of Mom's story will end not in Virginia but in New York City, the very city where my father was born. Perhaps there's enough cosmic symmetry in that to keep the world from losing all sense.
Enough about death. Death still lies in the future. For now, for this moment, my family sleeps, and barring an ominous phone call during the night, we'll all see what tomorrow brings.
The medical crew continues to work on Mom, but there's been no improvement. They're giving Mom some sort of medicine to alter the composition of her blood gases, perhaps in the hopes of finding out more about what's happening inside her lungs. Ultimately, they'd like to perform a lung tissue biopsy, but Mom's in too delicate a state for that.
Mom continues to fight to breathe on her own. The problem, though, is that her attempts at breathing over the ventilator follow the same sort of sharp, shallow pattern as she had shown when the paramedics took her away last night. The desired breathing pattern would be slower, deeper, and more measured.
Dad and David are back from visiting Mom; they had spoken with a certain Dr. Lee, who gave them the update I've just presented to you. Sean's about to hit the sack and I'm going to wander over to the hospital to stand with Mom for a few minutes (last I recall Mom's berth had no chairs in it). After that, I plan to come back and call it a day.
With the depression I'm feeling, sleep seems to come more easily. My fear, though, is that I'll be asleep when bad news arrives. I don't want that to happen.
Tuesday, December 22, 2009
Around 6PM, we met with Dr. Berlin in front of Mom's ICU berth. He spoke at length, but what he said can be easily summarized.
1. Mom's on the brink of multiple organ system failures as a result of massive infection. It may be possible to swing her away from the coming crash, but the doc isn't optimistic. At the same time, he made a point of not wanting to say anything definite.
2. No one has determined the specific nature of the infections; the cultures haven't come back yet, and might not for a while. Dr. Berlin doesn't think that knowing what microorganisms are at work inside Mom will make much difference, given Mom's overall state of health. He described her decline as "dramatic." Mom's infections are, however, likely lung-related. Pneumonia is commonly associated with long-term illnesses, including various cancers, as the doctor noted. His evaluation of a patient's prognosis largely depends on how the patient's health appears to be, overall (think: Karnofsky performance score).
In Mom's case, things look grim. She has become less and less able to protect her own airways through the usual means-- coughing, spitting, etc. It's likely that her lung and bloodborne infections are the result of her having aspirated bacteria from her mouth and from the air. She also appears to have aspirated some of the food she's eaten, being unable to cough out any particles that made it down her airway. However, Dr. Berlin doesn't think those food particles are the primary cause of the current slew of infections. He does, however, believe that this situation arose over a fairly short amount of time.
3. Dr. Berlin suggested that we think of Mom's progress in terms of 12-hour blocks. It's a good way to divide time up, especially for someone in as critical a condition as Mom is. We'll be checking in on her periodically, singly and as a group, throughout the evening, throughout tomorrow, and for as long as all this takes.
4. While we have no clear idea what the next few days will bring, we do know that Mom is trying to breathe over her ventilator, i.e., she's attempting to breathe on her own. This in itself doesn't mean much in the larger scheme of things (in fact, Mom's being sedated to calm her breathing efforts down), but it is, nevertheless, a welcome change from the previous night. If trends like this continue-- if Mom can begin breathing on her own, and if the antibiotic and other treatments succeed in stabilizing her, we're going to look into transporting her back to Virginia. This might not be easy, according to Dr. Berlin: there are logistical and insurance issues to consider. "In essence, she'd have to be medivac'ed," he said. Hospital staffers are available to help us flesh out the particulars of such travel arrangements, but we can't guarantee success. Mom may end up having to stay in New York.
5. So the upshot is that we're focused on the proximate goal of taking Mom back down to Virginia, where she'll be cared for at Fairfax Hospital. As I wrote above, this may or may not happen. We might have to say good-bye to Mom here in New York City. We simply don't know, but we're aiming to get her back as close as possible to her circles of care, to her home since the 1960s.
At present, we know very little about Mom's condition. She remains sedated and on a ventilator, and is septic. Beyond that, here's where we stand:
Mom is currently suffering respiratory failure and is unable to breathe on her own. She's on a ventilator, and might remain so for the next few days, or forever. If it turns out that Mom will never breathe again on her own and that she's been reduced to a vegetative state, we seriously have to consider a "do not resuscitate" option-- a very sudden end after a long, drawn-out, and painful process.
But we're not there yet: the docs haven't ascertained what, exactly, is wrong with Mom, so I don't see any reason for us to cut Mom off from the world until we know for certain that things are hopeless. Once we know more, we'll have to make some hard decisions-- whether to cease resuscitation efforts, whether to transfer Mom back to Virginia, etc. A lot depends on what we learn over the next day or two.
We did hear that Mom's suffering from a great deal of intracranial pressure, probably the result of multiple edemas from all the cancer inside her head, as well as whatever infection or infections she's acquired. A lumbar puncture was deemed too risky; it seems that the docs are still trying their best to stabilize Mom.
I'm left not knowing what to think or do. Just yesterday evening, early on around dinnertime, I was alone with Mom and spoon-feeding her some Korean soup. She was quietly accepting it between attempts at coughing her disturbingly rattling cough. She and I looked at each other a few times between mouthfuls-- long looks. I had no idea what she was thinking, but because I was alone with her (Dad and the brothers had left the room), I decided to expose my heart tto her. I told her how utterly sorry I was for being a bad son. "Eomeomni-hantae jalmot han gae neomu mana-seo jeongmal, jeongmal mian-haeyo," I told her. "I've done you so much wrong, and I'm truly, truly sorry." And I held her close and sobbed. Poor Mom; she had lost so much affect that she was unable to respond with tears of her own, or even to understand why I was crying. She sat still in my arms as I wept, and her immobility made me weep all the harder and more bitterly.
Eventually I finished crying, and I looked at Mom again, unashamed of my tears. She was staring at me again-- really looking at me. "Do you know why I've been crying?" I asked in English and Korean. She didn't nod; she didn't shake her head. She just stared. And somehow I managed to shake off my sadness and finish feeding Mom her dinner.
Only a few hours later, we had paramedics in our room, strapping a rasping, hyperventilating Mom to a gurney and rushing her off to the hospital. No good-byes, no I love yous, just a whirlwind of activity as Mom was taken away.
Fast-forward to this afternoon. We'd slept from about 6:30AM to 11AM, though some of us (like yours truly) were harder to rouse from sleep than others. We've booked another night at this guest facility, but we've also had to move to a different room. Luckily, we were given the room next door, so the move wasn't all that painful. At around 4PM, Dad and David left to see Mom; Sean and I will be joining them soon.
I've occasionally published photos of Mom during her treatment at any given hospital. I hope you'll understand if I refrain from doing that now. The sight of her with all those tubes running into her, and with her so small and helpless on her gurney, wearing a protective helmet that at this point serves almost no purpose, is beyond heartbreaking. No one deserves this fate, least of all my mom.
Around 6AM or so, we four guys found ourselves cross-eyed with exhaustion while stuck in the ICU waiting room for hours on end. Information about Mom was scarce; the tests that needed to be done required time, so updates were infrequent. Dad signed some consent forms as we sat there, but eventually it became obvious that we were all having trouble staying awake.
I went back to the hotel first, but a few minutes later Dad and my brothers appeared. We all knew we weren't going to be of any use to anybody if we continued to stay up, so we elected to sleep a few hours and wake up around lunchtime, comparatively refreshed.
Dad's been on the phone with various doctors, hospital facilities, and Pastor Jeri. Jeri told us that various members of the congregation want to chip in to help us defray the cost of staying at this guest facility; we appreciate the kindness and thank everyone for the incredible gesture.
I failed to mention, last night, that one of the problems the doctors are trying to rule out is meningitis. I know meningitis can strike incredibly fast, and it's a good candidate as an explanation for what overtook Mom so quickly-- literally within the space of a few hours. Now that I'm more or less awake, I'm curious to know whether the antibiotics have taken hold (one doc said Mom was being given "the next step up" from vancomycin), and I'm hoping the docs have taken swabs to every part of Mom's body to get every culture imaginable.
Mom might have only three months to live, but this doesn't mean we can give up or otherwise stop caring for her. If anything, this is the time to gather ourselves and prepare for that final sprint.
Mom's sedated and hooked up to a mess of IV saline bags. She's got a urinary catheter and is breathing with the aid of a ventilator. I felt her feet and her hands; her extremities were cold, so cold.
She was still wearing her helmet, and her face was swollen. She's got an arterial line stuck in her neck, and various other needles in her wrists. The sight of Mom lying there... well, it's the most pitiful thing I've ever seen.
The docs are planning on doing a slew of bacterial cultures, a lumbar puncture, and other tests to rule out what's going on with Mom. If they're doing cultures, it's likely they'll need to keep Mom at least 24 hours, which means that we might be staying in New York until Thursday-- maybe longer.
I've heard some talk that people might stabilize Mom and then transport her back to Fairfax Hospital in northern Virginia. It's just a thought at this point. Since no one knows for sure what's going on with Mom, everything's up in the air.
[NB: If you missed the previous blog post about Mom going into the ER after suffering respiratory distress, see here.]
Mom's been moved to the ICU. They say she's "septic," i.e., rife with infection. It's possible she has pneumonia, perhaps after brief exposure to the New York (or northern Virginia) chill as we moved her from place to place.
I'm in the hotel room, cleaning up after Mom's incontinence and making ready to go back to the hospital to see her. Dad and my brothers are there by her side.
UPDATE, 3:44AM: I'm at the ICU, and Dad and my brothers are not by Mom's side: they're in the ICU waiting room, and they haven't had a chance to see Mom yet. This worries me. Right now, I'm wondering what poor Mom is going through, and whether she'll make it through the night.
Mom suffered severe respiratory distress sometime around 12:30AM. She was breathing rapidly and shallowly, with a horrible, deep rattling sound coming from her chest. Dad noticed the problem first and elected to call 911.
After a frustrating conversation with a clueless dispatcher, Dad made himself clear to a less clueless dispatcher, and the paramedics arrived within minutes (about 12:40). Mom sounded awful, as if every breath were a death rattle. She wasn't responsive to our shouts, or to our commands to spit out the phlegm. The paramedics were expeditious as they prepped Mom, took her vitals, got her to street level and into the ambulance.
By 12:50AM, Mom was in the ER. Dad rode the half-block distance in the ambulance with Mom; David texted Sean about the situation, and we walked quickly to the ambulance entrance.
David and I were guided to a small waiting room while Dad rattled off the list of Mom's meds to a doctor. A social worker asked us for contact information, and offered to bring us some drinks. We gave her our cell phone numbers but declined the drink offer.
Mom's been stabilized. They had to sedate and intubate her to get her breathing and heart rates down (originally 40 breaths per minute and 160 beats per minute, respectively).
It's quiet now, and as we began thinking out loud, we realized that we needed to tell the doctor about the red patches on Mom's scalp, one of which now sports a white pustule on its crown-- very reminiscent of Mom's MRSA from months ago.
So that's where we're at now. Mom is out of sight somewhere with a tube down her throat, and a doc will come by to update us on Mom's condition sometime soon.
The fun never stops, does it? We just might end up staying until Wednesday at this rate-- if not longer.
Sent via BlackBerry by AT&T
Monday, December 21, 2009
Our family thanks Pastor Jeri for arranging to have our driveway, wheelchair ramp, and other walkways cleared for us to allow us easier entry to our house. We realize this sort of cleanup is hard work, but we're grateful that people have volunteered to take on this project.
UPDATE: Pastor Jeri writes, "Henry [Pastor Kim] deserves a lot of the credit, as well, for the cleaning and plowing idea."
UPDATE 2: Pastor Jeri writes again to credit Melinda Mason (thank you!) with the original idea. As Jeri writes:
Idea - Melinda
Organizer - Jeri
Work Crew: Henry, Ray Cobb, Mike Frady, Brian Burns and possibly another youth or two
Thank you all!
I'll write more later, but right now, the docs have told us that, based on Mom's latest MRI (done today), her cancer has spread too much throughout her brain for anyone to do anything. Debulking the large mass would kill her; attempting the intra-arterial Avastin procedure would cause too much bleeding, and would also likely kill her. Mom also no longer qualifies for the treatment because her Karnofsky score (an indication of her ability to function on her own) has fallen too low. At this point, Dr. Boockvar's prognosis is that Mom has about three months to live. He told us this news from sunny Florida.
We're stunned, we're disappointed, we're angry, we're sad, and right now, we're all very quiet. We'll be keeping in touch with Dr. Boockvar, who might have some palliative treatment options to discuss with us, and we'll be talking with Dr. Fine's team as well. Dr. Boockvar's feeling was that the prescription of carboplatin-- which I knew early on was doing nothing for Mom-- amounted to an admission that nothing more could be done; he hastened to explain that that was merely his opinion.
We'll have to start looking into hospice care and other final arrangements. Right now, though, the world just doesn't feel real.
Our thanks to Renée Molina and her boyfriend Ron for visiting us at our hotel room. I wish we had better news for the world, but then again, we've known from the beginning how the story would end.
We're back from the MRI. Mom's got a runny nose and still has a phlegmy cough. We need to request an antibiotic push or something; I don't want Mom's procedure to be thrown off because of a new cold.
One nurse told us we'd need to call the people who are sponsoring the clinical trial to see whether antibiotics are allowable as part of the protocol.
Mom's awake, but Dad's out of the room. He hopes to be back by 10AM to get Mom ready. We're going to try to leave at 11:30AM (moved forward from 11:45AM) so as to give us [read: Dad] a bit of extra time to deal with paperwork, etc. The MRI itself has been scheduled for 12:30PM.
Since I was awake at an absurdly early hour-- 7AM-- I've decided to make breakfast for the family before everyone gets up (my brother David was awake for a bit, but he's sleeping again as I write this). On tap for today: a mushy, nasty-good "casserole" of eggs, bread, sausage, and cheese. Some extra flavoring thrown in, of course. We've got some leftover challah bread that can be buttered and jammed up, along with a variety of fruits, some juices, several kinds of yogurt, and some cereal to round out the experience, and our bellies.
Cooking in the kitchenette has made me paranoid: the fire alarm is only a few feet away, and since Saturday, I've been petrified of accidentally tripping the alarm, which would necessitate sending everyone out of the building. How sensitive are fire alarms in New York? Do they go off when you severely burn your toast? That hasn't happened thus far, but there's always a first time.
Anyway, cross your fingers for Mom, if not for breakfast. I'm pretty sure the food will come out OK (I'm using a sturdy Calphalon pot to bake the casserole, as I didn't bring along an actual baking dish), but Mom is another matter.
Mom's been coughing this morning; she sounds a bit phlegmy. I'm hoping the problem clears up by the time she has her MRI; she has to spend about an hour on her back, and in her present state, she doesn't take direction well. "Hold still, ma'am" won't work if she has to cough or otherwise move while on the table. We'll need to make sure the medical staffers are aware of this, and that they are both patient with her and ready to assist her should she start choking for any reason.
Sunday, December 20, 2009
My brother David is on his way up by rail. He departed Union Station at 3PM, per his itinerary, but suffered a delay somewhere in Maryland as his Acela train experienced a mysterious mechanical difficulty. For a few minutes, there was a question as to whether the passengers would all have to disembark and move to another train, but David texted me to say that his train was in motion again. I don't know how late his train will be, but he seems to be "back on track," as he joked.
Mom's starting to wake up, but she's fading in and out. At one point, I asked her whether she was hungry, and she nodded. But right now, Mom's eyes are closed, and she seems to be asleep.
I say, Let Mom sleep. She's got an MRI tomorrow, and will have to be awakened rather early-- around 10AM-- so that she can be out the door by 11:45. The appointment's been set for 12:30PM.
Breaking news: I just found out that Mom's surgery has been scheduled for 8:30AM on Tuesday morning. The hospital had called Dad, but he hadn't checked his voice mail messages until this morning.
UPDATE, 3:29PM: Mom's awake. Dad sat her up, gave her her meds, and fed her a granola bar and chocolate protein bar. Mom's got to have a shower and change, but before that can happen, I need to go out and buy a plastic folding chair for Mom to use in the shower.
David's on the train and on his way over here. He ought to be arriving in Penn Station around 6PM, and will be at the hotel before 7. He plans to stay with us all the way through Mom's operation, and will ride back with us. I'm hoping we'll have eaten enough food to reduce the amount of sheer stuff in the van; otherwise, David might not have a place to sit!
Mom is currently asleep. Dad and I got up around noon. I think we both slept better than we did the previous night. Dad's still favoring his back.
I'm about to shower and cook a late breakfast. If Mom wakes up, she might eat some of that meal, or I might give her more of the Korean soups I've made. I may have to run out to the local duane reade to buy some more plastic containers. I'll be cooking a lot of food through Tuesday, and it'll have to be stored in some way.
I feel for everyone in the DC-Metro area, but where I am in Manhattan, I see only the wimpiest of accumulation. Weather.com is predicting only a 20% chance of further precipitation for today and tonight, with 0% chance tomorrow.
Far from being trapped in our hotel room, we're pretty much free to move about town.
So is that it? Are we done? (Apologies to Sean Connery's Malone from "The Untouchables.")
Before I talk in detail about Friday, here are a few thoughts about our Saturday.
1. On Saturday afternoon, I got up after a fitful sleep. You'll recall that I was awake pretty early because of all Dad's snoring, but things improved later in the morning, after Dad got up; I slept more soundly and awoke feeling more coherent. Mom woke up while I was sleeping, according to Dad; she had her meds and was fed her oatmeal bar and part of her chocolate "power" bar, so she was fine for breakfast. She went back to sleep not long after her breakfast.
2. Mom seems more alert when she's eating. She makes better eye contact, nods "yes" more directly in response to questions (she almost never shakes her head "no" anymore, preferring instead to hold her head perfectly still to indicate "no"), and seems more aware of her surroundings. Emotionally, she's also more reactive during mealtimes: when I leaned close to her during dinner, and started twitching my nostrils wildly, she lit up with a laugh. It was a perfectly silent laugh, but her emotion was unmistakable. Dad saw it, too.
3. Mom is very, very perseverative these days. It seems to me, sadly, that the cancer has taken over so much of her brain that she's on her last legs, and this clinical trial is our best hope to retrieve, if only for a while, the scraps and tatters of Mom's fraying self. The other reason I believe we're nearing the end is that Mom is beginning to lose motor control in her arms and hands. There are times when she will grab something so hard that it's nearly impossible to pry the object from her fingers, and Mom herself will appear startled by what she's doing. At other times, her grip on an object is so shaky and loose that she seems almost to be flailing. Her hands shake more and more these days, oscillating uncontrollably when she's tired, but also when she's not tired.
4. Most of the time, Mom fails to feed herself. According to Dad, she has also stopped brushing her own teeth, leaving it up to him to do the job.
5. Saturday was fairly quiet, but also labor-intensive for both me and Dad. Moving Mom around requires a lot of effort. Dad insists on doing most of the Mom-moving, despite the wrenching pain in his back. I made lunch and dinner for the parents, a process that took a while, given the limited kitchen facilities. I had brought along a great deal of kitchen supplies-- food, pots, utensils, etc.-- but, being spoiled by the renovated facilities at home, I still felt I had only about half of what I really needed. I managed to MacGyver my way through the meals. I also went shopping for some extra supplies; Dad, too, went out shopping for things like a power strip, an extension cord, and a heating pad for his poor, beleaguered back.
6. Snow didn't arrive here until just before 2PM. It's snowing in earnest now (12:43AM), and the eventual accumulation will rival the snow in the DC-Metro area.
Let's now turn to our Friday adventure-- and an adventure it was. As is true in any good action movie, the suspense and tension we felt during much of Friday was caused by a ticking clock. In our case, the ticking clock came in the form of a massive weather system: snowstorms for the upper half of the east coast, from the mid-Atlantic region up through New England.
This system defined our day and guided our decisions. Dad was keeping tabs on the weather; he relayed increasingly dire forecasts throughout the morning and early afternoon. As the day progressed, it became obvious to me that we needed to be heading to New York as soon as possible. With that executive decision made, everything else fell into place: Dad called the Helmsley Medical Tower and booked two extra nights; he also called Mom's primary care physician to see about grabbing prescriptions for meds that Mom was running low on.
I woke up around 5:30AM on Friday morning, having had a much better night's sleep than I'd had the previous night (Dad had awakened around 5AM on Thursday morning to alert me to Mom's cranial protuberance, and to the need to take her to the ER). I knew I had to get out of bed to wash up and go to the hospital early, but I was too woozy to get myself ready in a timely manner. I think I drifted off for a few minutes before waking up in earnest. By the time I arrived at Mom's bedside, it was 7:25AM. The doctors who did their rounds often had a habit of visiting patients in the very early morning, and Dad and I had wanted to intercept them so we could hear about the results of the MRI that had been done Thursday evening. When I arrived at the hospital and saw no doctors, I had feared that I was too late.
Mom woke up while I was with her; eventually, breakfast arrived: a soft waffle, a strip of bacon, some oatmeal, a cup of cubed honeydew melon, a cup of coffee, and a small foil-topped cup of juice-- the kind whose top you're supposed to stab with a straw. I cut up Mom's bacon and waffle into tiny pieces; there was no way I was going to allow a repeat of the previous day's choking incident. Mom obediently ate everything I fed her.
I soon discovered that I had arrived in plenty of time: Drs. Bagenstos and Young came by while I was feeding Mom, and that's how I learned about Mom's cranial bump: it was likely a tumorous growth, leaving the confines of the skull through the hole in Mom's head. Strangely enough, this news didn't rattle me as much as I thought it might: it may be that I had become so emotionally committed to the positive results promised by the upcoming intra-arterial Avastin delivery technique that I had convinced myself that any tumor could be shrunk down to nothing. Of course, I have no real basis for thinking this; while the patients who have undergone the treatment seem to have shown radical improvement, the data set remains small, with roughly a dozen people currently enrolled in the trial.
It wasn't long after the two doctors left that Dr. Wolfe, the attending physician, came by to see Mom. He confirmed what the other doctors had said about the bump, and also talked about Mom's tongue: the thrush had indeed come back, and even though she had stopped her fluconazole (anti-thrush med) to deal with geographic tongue, she would have to restart it. During the night, the hospital had given Mom an IV drip of fluconazole; her tongue looked much improved to me when I saw her Friday morning.
Later in the morning, after the doctors had gone, Dad and Sean arrived at the same time. I had been texting back and forth with Dad, Sean, Pastor Jeri, and my buddy Mike. I relayed the doctors' news, noting that they all felt that Mom should be discharged, and could go anytime. The nurses were wondering when we might be leaving; I told them I was waiting for Dad's arrival so he could take care of any paperwork. When he got to the hospital, Dad also noted that he wanted to pick up the CD of Mom's MRI images from the previous day. He did this while I retrieved that van from the parking lot, and Sean helped Mom into the van. Sean's been doing pullups as part of his workout, and his arm strength has improved: it was easy for him to scoop Mom up and place her in her car seat.
In the hour before our departure, Dad, Sean, and I sat with Mom, who had been rather violently dressed up in her normal clothes by two nurses.* Mom lay in her hospital bed, and as our talk turned to the happy prospect of her departure from the hospital, Mom, who had been largely silent and unreactive, noticeably brightened, bouncing our linked hands with her own as a sign of her pleasure. It warmed my heart to see her so happy. I know she hated being back at the hospital.
So when Sean put Mom in the van and went to fetch his own car, Mom was practically beaming (to the extent that she can beam at all these days). Like Sean, Dad had driven separately, and he lingered to get the MRI disk before driving home in the Honda Civic.
As I mentioned earlier, Dad's increasingly dire weather reports led me to propose that we leave that very day for New York in an effort to beat the storm and minimize Murphy's Law. Dad agreed, and set a cut-off time of 3PM, which sounded reasonable. Dad had called the Helmsley Medical Tower to add two nights to our stay; our goal was to arrive sometime in the evening, before the snow, and hunker down in warmth and comfort over the weekend before trundling Mom across the street for her NYP/WC-administered MRI on Monday.
With all that in mind, I drove Mom home. Whenever we stopped at a traffic light, I turned around to look at Mom, grasp her hand, and tell her what was coming next. She seemed excited about the prospect of going to New York: her eyes would brighten and she'd nod vigorously each time I mentioned our plans.
We got home, meeting Dad and Sean there. Sean had to leave soon after, and once he was gone, I began my own preparations in earnest. It had occurred to me that we would need to take along more than just the usual bare essentials: with a snowstorm on the way, I envisioned us more or less trapped in our hotel room and relying on whatever supplies we had brought with us. By "supplies" I mean food, of course, and that's why I ended up packing a huge cooler full of edibles, along with several grocery bags and boxes full of kitchen supplies. Various meats, Korean soup bases, vegetables, spices, aromatics like yellow onion and green onion, mushrooms, drinks, a brownie mix, olive oil, canola oil, peanut butter, jelly, sugar, flour, butter, condiments... I brought the whole shebang. I was especially keen to take along food that would have spoiled had we left it in the fridge for nearly a week. Why spend a fortune on meals in New York when we've got our own food, a kitchenette in our temporary digs, and a cook?
I also decided to take along a great deal of technological hardware and software. What are people going to do, stuck inside a hotel room with nowhere to go? Watch movies, of course! With that in mind, I unplugged my lovely iMac, gathered up peripherals for both the Mac and my Windows laptop, grabbed an assortment of DVDs, and boxed the whole thing up for the trip.
While this was happening, Dad was finalizing his and Mom's own preparations. He was also trying to get a firm answer from New York as to when Mom's operation would be. One staffer had told us that there would be no problem scheduling an operation: even though Dr. Boockvar was to be on vacation next week, Dr. Riina is the gentleman who normally performs the operation. But on Friday afternoon, a different staffer told Dad that, "When Dr. Boockvar is gone, everything stops." The ominous implication was that Mom would have the MRI, but there would be no operation for a while.
I heard this and nearly flipped out. Steaming, I asked Dad what the point was of going to New York, with Mom now visibly fading from us, if all they wanted for the moment was an MRI. I had thought that the clinical trial's treatment protocol required surgery to occur one day after the MRI had been taken. Dad had no response to my anger; he simply kept on trying Dr. Riina's and Dr. Boockvar's offices as we both made preparations.
Dad had to stop and leave, however: he had realized that some of Mom's medications were dangerously low, in danger of running out over the next few days, so he wanted Dr. Royfe, Mom's PCM (primary care manager-- i.e., her regular doctor), to write out some prescriptions, which Dad would take to some local pharmacies to be filled. To Dad's mind, it was better to resupply now as opposed to attempting such a thing in New York, with the dodgy weather. While Dad was out of the house, I spent a great deal of time cleaning our largest cooler. It was filthy, having sat outside on our deck for months, and required extensive cleaning. Thinking desperately about our 3PM deadline, I scrubbed and washed the cooler as fast as I could, moving the operation from the frigid deck to the warmer kitchen. By the time Dad got back from his medicinal errands, I had packed the cooler (and other boxes and bags) with most of the food and kitchen supplies I'd intended on taking.
Along with Dad's sudden pharmaceutical errands, we also experienced a further delay. I apologize that I can't be more delicate, but it was caused by Mom's incontinence. Normally, Mom's problems are urinary, and generally occur when she's either tired or fast asleep. When she's awake, Mom normally has better control of herself. But Mom's stay at the hospital probably threw her balance off; the stay also interrupted the normal rhythm of her medication schedule, a schedule that Dad has been scrupulously following for months. 3PM had already come and gone when Dad hurriedly transferred Mom from the couch to her wheelchair, ready to roll her out the door. That was when I noticed a familiar smell, and suggested that we might have to stop everything and change Mom's clothes before loading her back into the van. We wheeled Mom into her bedroom, and Dad converted the bed into a changing station. He elected to deal with Mom alone,** so I went out and set up the lovely GPS navigation system that my brother David had lent to us.
Mom's intestinal problems were one delay among many, and Dad gamely dealt with her as the clock ticked on. He also somehow managed to field an important phone call while working on Mom, and I found out about this when I went back into the house after setting up the GPS: New York had called back to say that Mom's surgery had been scheduled for Tuesday. No hour had been set, but Tuesday it was. I was overjoyed, and that joy probably buoyed me for the rest of the day. I hugged Dad, told him I was proud of him, and marveled that he had managed to juggle two such disparate activities-- cleaning Mom and handling a phone call-- with the grace and poise of a seasoned juggler.
By the time Dad had gotten Mom cleaned up and re-clothed (I helped, at this point, by taking soiled linens down to the laundry), David had arrived. He and I wrestled Mom into her coat, then I tasked David with doing a second load of laundry and salting the various pathways on our property. David, for his part, offered to bring up any items we might have forgotten. By the time Dad, Mom, and I left the house to start on our drive to New York, it was 4:50PM. We were nearly two hours late.
During the drive, we listened to the radio to keep track of the storm. It wasn't long before we heard that Fredericksburg, a city about an hour to the south of us, had already started to receive snow, and that northern Virginia would likely receive the blow around 9PM. We wanted to be as far away as possible from the leading edge of that weather system.
But our route had a series of delays in store for us, starting with two accidents in Maryland that forced us to crawl along for inordinate lengths of time. David's GPS navigation system seemed to be mocking us as it readjusted-- and re-readjusted-- our estimated arrival time. In New Jersey, along the Jersey Turnpike, we encountered three more traffic jams, none of which had visible causes. I recall reading a science article, years back, about the inevitability of traffic jams: all the variables of individual driving patterns tended to coalesce into larger mass behaviors, often resulting in regularly appearing areas of "bunching" and "looseness," even along long stretches of road with no apparent impediments to steady, rapid travel.
I drove. But despite my joy at learning that Mom's operation was definitely on for the coming week, I was dead tired. Eventually, I had to ask Dad to take over for 20 or so minutes, so that I wouldn't nod off at the wheel. Dad drove about 40 minutes in order to get us to a rest area. We grabbed some fast food there, along with a healthier dinner for Mom (yogurt, etc.), then plowed onward. And despite constant checking, we saw no hint of snow.
The original plan had been for me to drive us all the way up to north Jersey, then for Dad to take over, since he had said that he wouldn't mind driving in New York-- a prospect that I hated and feared. But I must have missed my final opportunity to let Dad behind the wheel while at a rest stop, because we suddenly found ourselves past all the rest stops, and on roads with signs pointing toward the Lincoln Tunnel. "Well, guess who's driving us into Manhattan!" I said, falsely cheerful.
Luckily, we were so late arriving in New York that it was past 11:30PM by the time we exited the tunnel and found ourselves in New York City. The traffic at that hour was relatively light, which made navigating the city streets easier than I had anticipated. Still, I told Dad several times that "I'd never try this during the day." My mantra.
We arrived at the Helmsley Medical Tower a few minutes after midnight. No snow, but New York was definitely cold. Dad had booked us for five nights; we had just wasted $220, having missed Friday night.*** Another setback awaited us: the parking garage door had been closed. Luckily, Dad was there to rescue me again: he saw a sign on the wall beside the door saying that the garage was open 24 hours, and that if the door was closed, one only needed to ring the bell for entry. This I did, and sure enough, the door rose and allowed us ingress.
Although the van groaned under the weight of our supplies, our first priority was to get Mom up to her room and settled in. We got Mom into her wheelchair, made our way up from the subterranean garage to the lobby, checked in, and found ourselves at our room on the eleventh floor. Dad tended to Mom while I went back down to the lobby, grabbed a luggage cart (the kind that looks like a rolling brass jungle gym), and went back down to grab supplies out of the car.
In the end, it took two trips to bring out all the necessities. I had to open all the kitchen-related containers and bags, stock the fridge, freezer, and cabinets, and then turn to the task of setting up the computer equipment. As I wrote previously, the Mac posed a special problem, as it was initially incompatible with the DSL hookup the hotel had provided.
But we had arrived. We were here. And we had beaten the snow. Despite delays, despite Mother Nature herself conspiring against us at every turn, we had made it. All of us were dead tired, and Dad and I eventually drifted, at different times, into a troubled sleep.
If I had to name one hero for Friday, I'd name Dad. He was the one who kept after the staffers in New York, and he managed to do this even while performing the unsavory work of taking care of his wife's physical needs. He also helped with the baggage-toting, and was the primary mover whenever Mom needed to be shifted from her couch to her wheelchair to a seat in the minivan. His back protested the terrific strain he was putting on it, but if there's one trait that every member of our family shares, it's stubbornness, and that includes stubbornness in the face of cosmic forces that are determined to see you fail. It might be in poor taste to end this long blog post with a middle finger triumphantly raised against the heavens, but I hope you understand that we had to contend with impending snow, unstable bowels, uncertain scheduling, unanticipated logistical issues, and nightmarish traffic. From the appearance of Mom's cranial bump onward, it really has felt as if great powers have been attempting to dissuade or force us from our chosen path, and it feels good to shut our ears to them. We're here. Mom's going to get the treatment. And that's that.
*The nurses had noted that Mom's clothes were no longer appropriate for her, especially in a hospital context: she would need to wear looser garments so there would be less strain on her joints while putting the clothes on. I've been pestering Dad about getting Mom some sort of simple, stripped-down hanbok style of clothing, but so far, we've been making do with things like sweatsuits. On Friday, however, Mom was wearing a white button-down shirt, a green cardigan, and brown pants. Dressing and undressing Mom has become increasingly difficult, especially as she has begun to lose motor control.
**Having helped Dad attend to Mom before, and having helped minister to my little brothers when they were very, very little, I have no problem with the human body and all the entertaining things it emits. It made no difference to me whether I helped Dad or not: if he wanted my help, then fine. If he didn't, that was fine, too.
***You could counterargue that the money hadn't been entirely wasted: hotel check-in times are usually after 3PM, and check-out is at noon. Viewed in that way, only nine hours of a 21-hour stretch had been wasted. Nine-twenty-firsts of $220 equals $94, which isn't quite as tragic as wasting the entire $220. If we include the noon-to-3PM "dead time" as part of our paid time-- which it is, given that we've paid for five nights-- then only 3/8 (i.e., 9/24) of the $220 had been wasted: $82.50.