Sunday, December 20, 2009

the story of Friday (and Saturday morning)

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.



Horace Jeffery Hodges said...

This is hard to read, Kevin, and I can only imagine what you and your family are going through. I've been keeping up with your posts even though I don't very often know what to say.

I remember what you said several months ago . . . but I'm hoping for Christmas.

Jeffery Hodges

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Kevin Kim said...

Thanks, Jeff.