She's back to watching Korean TV with her big sis, my Emo. Dad had to go back out and get prescription meds from a 24-hour vendor so we can start Mom on her regimen right away. Because we had been given so much food, Dad planned to swing by the hospital and give most of it to the nighttime hospital staff-- we have no way to store it and eat it all (I hope Mom's friends will understand: we're simply spreading the love, and we don't want such bounty to go to waste).
I cried quietly in the van on the way home. Tears seem to come easily these days, and I'm not normally that sentimental. Mom sat with me; we held hands during the entire drive. Mom's fingers, so alive, flexed periodically in my grip. Emo sat up front in the passenger's seat while Dad drove us home. A gentle rain fell; lightning flickered in the distance as we rolled along.
Tomorrow will be hot. We're lucky: we can still think about tomorrow.
And tonight, at least, we can pretend things are almost normal. I'm thankful to Emo and to Uncle John-- and to the slew of visitors Mom had earlier today, including one of Mom's oldest friends-- for easing Mom's time in the hospital. The gift these good people have given to Mom-- and to the rest of us-- is incalculable.
Saturday, April 25, 2009
I can already see that I'll be doing a lot of thank-you posts for the foreseeable future. It's a happy burden: the kindness has been coming from all corners.
Big thank-yous to the folks who've been emailing their encouragement, or leaving comments on the blog, or sending cards, which now cover our mantel. Another thank-you to the people who have been constant visitors: Pastor Jeri, Pastor Kim, Mrs. Lindow, and others. I'd thank my aunt and uncle for coming, but they're in the same house with me, so it seems silly to put that on the blog. Nevertheless, I should thank them publicly-- them and their families-- for the kindness and love they've shown us.
I was delighted to receive emails from the Molina family; they all wrote very touching "e-pistles."
Thanks to my friends, and to friendly e-acquaintances yet unmet, who've been so supportive in person or via some form of e-contact (texting, email, Facebook, etc.).
Many thanks to the good people who gave Mom the book of prayers and inspirational writing. Thanks also go out to the medical professionals caring for Mom. To all the others I've forgotten to mention by name (and I hope you'll forgive the lapse): thank you.
Right now, we're prepping the house for Mom's arrival, which is likely (though not certain) to happen this weekend. In a few minutes, I'll be driving my aunt out to a large Korean store so she can shop for groceries and whip up a big feast for whichever day Mom finally arrives. I haven't been to the hospital yet; Dad is also home, and is keeping tabs on Mom via phone calls to the nurses on Mom's floor. My uncle has to leave today, so there's that to consider as well. All in all, lots of activity.
More later. Thanks again.
Friday, April 24, 2009
As I mentioned in the previous blog entry, there's a good chance that Mom will be coming home this weekend. We don't have official word on whether Saturday will be the day, or Sunday, or whether the original prediction was wrong and Mom will have to stay in hospital until next week. My brother Sean says that he's heard that Saturday is Mom's likely departure day, but I'm not sure this is canon.
We'll all be glad to have Mom back home. She's been away since last Thursday morning, April 16th-- more than a week. It appears that she'll be declared OK in terms of any MRSA-related protocol (i.e., we won't need to gown up once she's home), though people who visit Mom at home should probably exercise some caution. We're constantly reminded of the importance of infection control these days, especially with the recent news about that swine flu.
Mom will have about a week and a half to rest and heal. As part of that healing, she'll have those mean-looking staples removed from her scalp (and, I presume, her skull, a bit like in this photo) sometime next week; it's an in-office procedure.
After that, Mom's therapy begins. Her release from the hospital will be accompanied by a good bit of instructional paperwork relating to her post-hospitalization care: what medicines to take, what exercises to do, what infection control precautions to follow, how to bathe, etc. On May 11, Mom and the rest of us will be at the hospital for her first major appointment with the radiologist who will be supervising the radiotherapeutic aspect of her treatment. He will discuss the therapy's ins and outs, its benefits and side effects. On May 14, our family will meet with Dr. Meister, the man who broke the news about Mom's prognosis. It turns out that Dr. Meister deals with the chemotherapeutic side of treatment; he and the radiotherapist have worked together for years.
My brother David will doubtless want to bring up, during these conversations, a new treatment that he discovered while doing an online search for the latest news about treatments for brain tumors. You can read about 2.5-dimethyl-celecoxib, also known as DMC, here. As a family, we've already agreed that Mom will go wherever the best treatment is available (my Texan relatives suggest a facility in Houston). DMC isn't FDA-approved, but it's possible that we could set Mom up to participate in trials (read more about DMC here). David is right to be pursuing these avenues; I admire his determination.
In other news: Mom can walk around on her own, as she demonstrated several times on Friday afternoon, but she still has balance issues and will need constant watching. When Mom comes home, the simplest solution for us, at this point, will be to forbid her from going downstairs-- a place she doesn't visit much, anyway, because its messiness has always depressed her. (I'm using "depressed" more in a metaphorical sense than a literal one. Of course she's ventured downstairs on many occasions, but because the upstairs received a more extensive renovation, she prefers to remain there, among all that beauty. Who can blame her?)
Mom's memory has greatly improved, but it has holes. She doesn't properly recall certain recent events or doctors she has recently met, and she has completely misremembered other events; but her older memories, the ones that span years and not merely weeks or months, remain largely intact. She volunteers more in conversation, and when Mrs. Lindow visited on Friday afternoon, she remarked that Mom seemed "100% better" than she had been on Wednesday, when she was still groggy after Tuesday's operation. While Mom still doesn't seem fully emotionally engaged, she now laughs more freely and heartily than she did last week, as if the mirth of her interlocutors were truly resonating within her. She follows conversations not so much by tracking their intellectual content as by attending to their emotional flow. Her affective capacity seems to be returning.
Improvement, deterioration, disability, recovery-- it's a lot of data for those of us around Mom to absorb. Dr. Meister had told me that Mom "will never be tumor-free," which is about as depressing as things can get. Yet I'm witnessing Mom's slow rebirth after whatever horrifying system crash had taken place last week. Squaring my present observations with the professionals' dark prognostications simply produces a jumble of cognitive dissonance in my brain. Despite what I wrote in my earlier post about the need to understand reality's inevitable flow, I find myself acting like an unwilling roller coaster rider, bracing my feet in a vain effort to stop the coaster from plunging down the hill. I don't want this to be happening to Mom. I wouldn't be so exercised if I were the one with the tumor, which I'd gladly accept into my own head. I imagine that, if you asked my dad or my brothers how they felt about all this, they'd offer similar sentiments.
But that sort of self-sacrifice is just a romantic fantasy. The fact is that Mom has the tumor, not us. As always, the right conduct is just to be in the moment, to take life day by day, to "follow your situation," as they say in Korean Zen. Right now, we can be happy that Mom is improving. Right now, we can be glad that she will soon be home. These are good things, reasons for joy. And in that spirit of joy, I need to think about how I can use the next few months, or years, or however much time is left us, to make up for all the hugs I've neglected to give Mom.
UPDATE: We've heard from a doctor that Mom might be going home this weekend. This isn't absolutely certain yet; Mom requires a few more checkups. The point, though, is that if you're planning to visit Mom in the hospital (which is what this post is about), you'll either have to do so in the next couple days, or visit her once she's home with us. Just FYI.
Dad wants me to give all my readers the official go-ahead re: visiting Mom. Yes, you may go see her. She's in Fairfax Hospital's Tower Building (i.e., the main building when you turn left off Gallows Road at the "gray" entrance; it's the first major building you'll see). Park where you can, then find the "gray" elevators by the main lobby. You'll feel like a heel for doing this, but take the elevator up only one floor to the second floor. Turn left immediately upon exiting the elevator, and look for Room 276. Mom is in Bed 1, the bed closer to the exit. For Fairfax Hospital's phone numbers, check out their website.
There are, however, some issues to address. Please read the following before heading out to see Mom.
1. Mom is MRSA-positive (see previous posts if you're not up to speed on what this means). This isn't as scary as it sounds, but it does mean there's a protocol to be followed.
When entering her room, you'll need to glove up and gown up. A metal cabinet just outside Mom's door normally has gloves on top of it (be careful: the gloves come in several sizes, a fact I discovered when I ripped one while trying to put it on my hand), and gowns inside it, usually in the top drawer.
Once you have prepped yourself and have entered the room, you cannot exit without first removing your gloves and gown. They must be removed just inside the threshold, and thrown away in a large red plastic garbage bag. After doing this, you must wash your hands, which is a standard infection control procedure. Most infections are passed along through a lack of proper hand-washing.
Only after having removed your gloves and gown, and then having washed your hands, may you exit the room.
[NB: If you're an MVPC member and are unsure how to proceed, know that Pastor Kim and Pastor Jeri are veterans of the MRSA protocol and can mime the procedure for you.]
2. Although I need to verify this, I'm pretty sure that Mom cannot receive flowers, even though she's no longer in the ICU. Pollen is a potential allergen for some patients, and living things are all carriers of various "contact" and "airborne" pathogens. I should note, though, that our family is very, very thankful for the flowers that have been sent directly to our house. We don't know yet when Mom will come home, but I'm sure she'll appreciate the display (as do the rest of us). On behalf of Mom, then, I'll say, "Feel free to keep on sending those flowers!"
3. We family members have been told that we may kiss Mom on the forehead. Whether you decide to do this is, of course, your choice. Once gloved and gowned up, you may hold Mom's hands, grasp her feet through the blankets, etc. Mom might be embarrassed to see you at first; even before the operation, she had a sense of dignity, and would rather be seen after a proper session for her hairdo and makeup. Don't worry about Mom's embarrassment (if she even shows it to you). She'll appreciate your visit.
4. If possible, please coordinate amongst yourselves so as not to crowd Mom. Staggered visits will keep her spirits up throughout the day, but once there are more than four people there at the same time, all surrounding her bed, this may become a bit stressful for her. Mom will want to interact fully with everyone, but her verbal output remains fairly basic. She will, of course, remember who you are (long-term memory hasn't been affected), and might even ask after your kids or mutual friends/acquaintances. Beyond that, though, you'll find that you'll be doing most of the talking, which to me seems proper: give her brain as much auditory stimulation as you can. Come with stories. Read something funny. If you feel like praying with her, do so. If you don't, that's fine, too; we're not pushy (and long-time readers of this blog know that I'm not pushy when it comes to this particular topic).
5. Related to the previous point: Mom's visiting hours apparently aren't restricted, so if you pop up at 9PM, that's probably OK, unless she happens to be napping. She may have certain things to do throughout the day as the nurses check on her regularly, so please be prepared to leave the room rather suddenly if the nurse asks you to. Again, remember that you cannot leave without first removing your gloves and gown, and then washing your hands.
Beyond those considerations, you now know as much as I do about proper etiquette. If Mom is struggling to sit more upright, feel free to step in and help her. Your own common sense and compassion will guide you. Those virtues guided you to her door, after all; why would they fail you once you made it inside the room?
And to all of you, I say: thanks so much, in advance, for coming to see Mom. And to those good folks who had wanted to see her before now (but who saw only us guys), thank you as well.
In the front of my book, Water from a Skull, I quoted my favorite snippet of the Tao Te Ching:
Try to make this sacred world
into more than what it is,
and you ruin it.
Try to grasp it,
and you lose it.
To me, this verse expresses what religion is all about. First, see things for what they are. Second, don't try to possess, because possession is impossible. Try as you might to hold on to the things you think you possess, and you'll lose them eventually, if for no other reason than because the notion of possession implies the notion of loss, and reality is always moving out from under you.
This desperate grasping, this vain attachment, isn't the proper way to relate to reality. What's more proper is to remember that nothing you have is yours. You can't even control the ebb and flow of your own cells-- how do you expect to control the things around you? No: real wisdom comes first from acknowledging this state of affairs. You're not powerless, you're not helpless, but you do have to understand the basic nature of things if you want to know happiness and share it with others. Far less eloquently than the writer of the above verse, I put it this way in my book:
"Mastery" in calligraphy is like "mastery" in other pursuits, such as surfing: it's less about controlling outside circumstances and more about mastering oneself. The surfer doesn't seek to subdue the wave; his mastery involves an understanding of and harmonization with it. By the same token, the calligrapher can't alter the physics of ink's interaction with paper, but he can alter his own technique to produce the desired effect. As the ink is absorbed into the paper, so the calligrapher is absorbed into the work he creates.
Such activities point us to a way to conduct our own lives: not attempting to control what we can't control, worrying about what we can't change, but working instead to change how we move through the world, and therefore how the world moves through us.
So I string these words together for the first time: my mom has a tumor. But even if she didn't, it would still avail me nothing to try to grasp her, to halt her eventual disappearance. This is because we all disappear; it's in the nature of all phenomena to go places. Even when we're still as statues, we're moving on. Handling what's happening now requires recognizing this basic fact.
None of this implies giving up (sometimes fatalism is another word for laziness), but it does mean that, whatever we do, we don't give in to delusion or false hope: we should see things as they are, and however our love for others expresses itself, that love should never be grasping. That sort of attachment is ultimately selfish, and it goes hand in hand with fear, panic, and a general inability to function as we should. Especially during the coming months, I and the rest of my family will have to proceed with clear minds. This won't be easy, but it's what we have to do.
Thursday, April 23, 2009
When I went back in to see Mom and Emo, I was met by a certain Dr. Meister, who suited up alongside me so we could enter Mom's room together. He laid out to us what the docs know at this point, which is essentially what we already knew: the surgeons had taken out as much of the tumor as they could, and the preliminary assessment was that we are looking at an aggressive glioma. Mom will have to undergo radiotherapy for the tumor, along with a new type of chemotherapy in pill form (for those doing online research about all this, be aware that some information might be slightly out of date; some references that I consulted said that chemo is rarely suggested in cases like Mom's).
The prognosis for people with Mom's type of aggressive glioma isn't that great. A person normally has about one to two years of life with regular treatment, according to Dr. Meister. Anecdotally speaking, there are exceptions: Dr. Meister has one patient who has gone four years with no recurrence of his tumor.
We all want to be positive, especially today, especially now, with Mom doing so much better after surgery. But the doctor's news was devastating for my aunt, who's trying her best to be positive in front of Mom, her little sister. Obviously, it's devastating for the rest of us, too: more than ever, it brings each precious moment into focus.
Now is not the time to give up, not when we're at the very beginning of exploring our treatment options. I'll tell you more as new developments arise.
UPDATE: Here's a post by a neurosurgery resident re: Ted Kennedy's brain tumor, which is the same type as Mom's. The resident's blog is interesting; you get some idea of what the healthcare profession looks like from the inside. It's not always pretty, as this post demonstrates.
My aunt (whom I'll call "Emo" from now on, per the Korean title, i-mo, one of many Korean words for "aunt") and I left around 10:20AM to visit Mom. Dad has to stay home, catch up on paperwork, and be ready to pick up my uncle from the airport when he arrives around 2PM. Dad will be at the hospital with Uncle John in the mid-afternoon; Sean is also coming by later today.
Mom seems much better than yesterday. She's eating, she's less nauseous, and her cognitive improvement continues in terms of her aphasia, short-term memory, and ability to feel and express emotion. We're told that she'll likely be moved out of the ICU today, which is good news. And bizarrely enough, because she's MRSA-positive, this likely means she'll have a double room to herself, though there's a chance she might be placed in a room with another MRSA-positive patient.
No word yet on the results of Mom's latest MRI.
David came to the ICU not long after my arrival; the staff bumped me out because only two visitors at a time are allowed there, so I'm off in a nearby waiting room, typing up this entry.
More updates soon.
Wednesday, April 22, 2009
Brief chronology for Wednesday:
1. Pastor Kim visited Mom in the morning. She was asleep.
2. Sean visited Mom later in the morning; he reported she was "groggy."
3. Dad picked up my aunt at the airport around 3PM, then went straight to the hospital. Mom was apparently awake and talking, though not too chatty.
4. I got to the hospital around 4:30PM. Mom was still awake and talking with my aunt. I joked with Mom, too, and she was able to laugh. Dad waited outside the ICU while I was in there. Sean texted me to say he would be there around 7PM; he ended up arriving earlier.
5. By the time Sean saw Mom again, she had gone quiescent again. Dad, Sean, my aunt, and I all went out to dinner in the nearby Koreatown.
6. We came back to the hospital and Mom was seemingly asleep, or maybe just groggy. In pairs, we said our goodbyes to her, to let her rest.
I had delayed my visit to see Mom until about 4:30PM or so. It seems I came at the right time: Mom was awake and listening to my aunt, her big sis, chatting her up in Korean. I slipped in some jokes, and Mom laughed. When Sean had seen her earlier in the morning, she had been extremely groggy, as well as nauseous and in pain from a headache (naturally!). When Sean saw her again, sometime after I had seen her, she was once again groggy and barely responsive. I assume this means she's simply fading in and out on a cycle partly determined by the meds floating around in her system.
Dad and I were the last to see her this evening. Mom was prompted to partial wakefulness by a male nurse so that she could take some medication; after drinking and swallowing with some difficulty, she settled back into bed with her eyes closed. Nevertheless, I knew she could hear us. I said, "I'm going now" in Korean, and she nodded weakly, eyes still closed. Dad and I had flanked her bed, each of us with one hand on one of hers. I saw that she had gently gripped Dad's hand. In my case, Mom gripped my gloved forefinger the way a baby instinctively grasps a parent's digits. It was a moment I'll remember for a long time, not so much for how it looked as for how it felt.
My aunt is with us at home now. She's on Texas time, which means she's slightly less tired than we are. Uncle John arrives tomorrow afternoon; it'll be good to see him, too, and given how happy Mom was to see her older sister, I'm sure she'll be just as happy to see her younger brother.
For people wanting to visit Mom: at least for the time being, Mom is in the Neuroscience ICU of Fairfax Hospital-- second floor, berth 10. While the intention to visit Mom is appreciated, she remains positive for MRSA (a potentially virulent bacterium often associated with in-hospital infections), requiring a special glove-and-gown protocol. The rules for the ICU also stipulate that there should be only two visitors at a time, so visiting Mom en masse is inadvisable.
Upshot: for now, it might be better to hold off on visiting Mom-- who is currently floating in and out of consciousness as her body processes out the anesthetics-- until she is transferred to the step-down unit (i.e., to non-intensive care).
Those hoping to reach me by email will find my contact information on this blog's sidebar. I have more contact information on Facebook.
Many thanks to Pastor Kim of our church, MVPC, for coming out to visit Mom this morning.
UPDATE, 2:12PM: My brother Sean reports to Dad that Mom is "groggy." Dad and I were home this morning; Dad spent a lot of time making and taking various calls from people, rearranging appointments, running errands, and prepping to pick up my aunt from the airport. I'll be driving up to the hospital separately, as it turns it, but first I need to clean the upstairs floor.
UPDATE, 6:15PM: Mom is awake and very reactive. My aunt is in the ICU with Mom (Dad and I are taking turns, allowing my aunt to stay constantly at Mom's side), and they're talking in Korean. I added my broken Korean to the interchange for a while; Mom even mustered up enough affect to laugh weakly at our joking. Mom's not too chatty, but I noticed right away that her short-term memory had radically improved, and her aphasia seemed almost nonexistent. She doesn't seem to remember the desperate events of Thursday, which is probably for the best.
Sean swung by earlier today and saw Mom when she was asleep; he'll be back at the hospital at 7PM, and will probably be delighted to see how much Mom has improved.
Tuesday, April 21, 2009
[NB: See the bottom of this post for more updates.]
As of 5:50PM today (Tuesday, April 21), Mom is still in surgery and has been deemed "stable." Surgery began at 3PM; we're told that it might take 5 or 6 hours. When the surgery is complete, the docs will come and talk with us about their preliminary findings and probable treatment paths.
Mom will remain in recovery for a bit after surgery; she will then be moved to the Neuroscience ICU. For at least 24 hours, she'll be sedated and intubated; a respirator will help scour carbon dioxide from her brain. There's no fixed schedule for her extubation, but we know that she'll be in hospital for at least a few more days after surgery.
So much depends on what the surgeons find inside Mom's head. We were told that there were three possibilities; two of those possibilities involve tumors, and the third is infection: the mass might actually be an abscess. We were told that this third possibility is unlikely, however; if the mass were an infection, Mom would be sicker. The aggressive nature of the growth makes it highly probable that Mom will need further treatment. As we had been told last week, surgery was "just the beginning" of treatment.
Our church's associate pastor, Jeri Fields, was here with us again, along with Mrs. Higdon, a family friend (and fellow congregant) who very kindly brought us lunch. One of Mom's Korean friends, Mrs. Lindow, is a GI nurse who works at Fairfax Hospital, and she has taken the time to visit with us after her shifts, even asking after Mom and updating us on her condition.
Rewind to this morning. Dad and I woke up around 5-ish, prepped and got to the hospital around 6:40AM. I dropped Dad at the main entrance, and he tracked down one of the neurosurgeons, whom we were supposed to meet at 7AM. It's a good thing we got there early, or we'd have missed the surgeon altogether. The conversation didn't reveal anything new; Dad was told that the docs would be back before the pre-op phase to give us the lowdown on what would be happening.
Dad and I waited with Mom, who was surprised to see us in the ward so early. As always, there was a lot of hand-holding and talking and foot-massaging. My brothers David and Sean came by, fighting rush-hour traffic. We sat while Mom had routine tests done; today, she wasn't allowed to eat anything, so she was reduced to drinking a bit of water with her pills. She took care of personal hygiene as best she could, sneaking off to wash herself while I napped at her bedside (I must have slept pretty soundly to have missed all that racket), and later brushing her teeth when all of us were present. We got Mom to sign consent forms and the advance directive (a form that uses polite language to address ghoulish matters, like organ donation in the event of death, acceptance/rejection of heroic measures to save oneself, etc.). A group of docs finally came by to talk about the upcoming surgery. After all that, we were told to sit tight until Mom was taken down to the pre-op room. Pastor Jeri, meanwhile, prayed with us and presented Mom with a prayer shawl that was a gift from the congregation.
When the time came (a bit after noon), we followed Mom down to the pre-op area; she was placed in the "isolation" booth because of her MRSA. As before, we held her hands and hugged her and massaged her feet, talking all the while. Mom's mental state may have been a blessing in disguise; I'm not sure how I'd have felt in her place, acutely aware that I was about to undergo brain surgery.
We met the surgeons who would be working on Mom; they reviewed the game plan with us, outlining the risks, the hoped-for results, and answering what questions we could think of. A capable prep team set Mom up with IV drips, and once again, we had little to do but wait for the signal that it was time for Mom to go.
Soon enough, we were told that Mom had to head on over to surgery-- time for us to say our goodbyes and hope against hope that these surgeons were as good as everyone said they were. We took turns saying goodbye to Mom, none of us knowing whether this would be the final goodbye. I whispered "I love you" in her ear, and stepped back to look deeply into her eyes. She looked at me, a smile of gentle reassurance on her face, and for the first time since last Thursday, I finally allowed myself to cry. I saw that poor Sean was in the same boat.
We left the pre-op area with Pastor Jeri, and made our way to the spacious waiting area. There, we met our aforementioned family friend, Mrs. Higdon, plus two more of Mom's Korean women's society friends-- Mrs. Kopf and Mrs. Rappaport. At that moment, I would have preferred to sit alone, but ultimately, it was something of a relief to have people to talk with. I would have been a blubbering mess otherwise.
Around 5:50PM, after hearing that Mom was stable, we made the command decision to go eat. Mom's two lady friends had already left; Pastor Jeri and Mrs. Higdon remained with us until we got up to go to dinner; Mrs. Lindow also took her leave at that time. As Dad said, we've got quite a support group pulling for Mom.
Mom's elder sister and younger brother are flying over from Texas; my aunt arrives tomorrow (Wednesday) afternoon; Dad will pick her up from National Airport. Uncle John will arrive Thursday and stay until Saturday. Tonight, we'll be prepping the house for them, and I'm sure Mom will be happy to see them (thanks, Matthew and Jihae, for your kind expressions of support).
UPDATE: Mom's surgery ended around 8PM. A preliminary diagnosis, based on a quick examination of the mass removed from Mom's brain, is that we're dealing with a possibly malignant glioma-- in this case, a primary (i.e., not metastatic) tumor originating in Mom's brain. The surgeon said that gliomas tend not to have clear boundaries; at this point, the good news is that everything that was visible in the MRI has been removed, but this doesn't mean that absolutely every part of the tumor is gone.
Happily, Mom has already been extubated and is awake and responsive. The docs asked whether she was in pain, and she shook her head no. We're hanging around the hospital, waiting for Mom to be transferred to the Neuroscience ICU. Once she's there, we'll be able to see her and talk with her.
For the moment, then, we can breathe a sigh of relief. Mom needs time to heal before other therapies can be implemented (e.g., chemotherapy, radiation therapy, etc.), and the road to recovery doesn't promise to be easy. For the moment, though, it seems the worst is over.
UPDATE 2: It's 8:37 the following morning. We got to see Mom last night, sometime around 10 or 10:30PM. She spent most of her time lying in bed with her eyes closed. While she was completely uncommunicative, verbally speaking, she did open her eyes twice and stretched her left arm out twice as well. The first time, she appeared to be looking straight at me and reaching toward me, but I'm not sure this is the case, given that the second time she performed the gesture (which I saw after having switched position to the other side of the bed), it looked more as though she were simply stretching her arm. The same arm occasionally made slight movements while it rested on her body; the nurses said this was possibly a sign of discomfort with or agitation at the ambient auditory stimuli.
Mom's breathing was a bit labored and her vital signs were elevated: higher blood pressure and more rapid pulse than usual, but we were assured that she was stable and that "her labs were excellent," whatever that means.
8:45AM: Dad tells me that Mom's morning CAT scan came back "fine," though the nurses with whom Dad spoke a few minutes ago had no details on what "fine" might mean; I assume the docs will provide us with a detailed reading. Mom's also been moved from PACU (post-anesthetic care unit) to the ICU; she's in the same bed she was in when she first arrived at Fairfax Hospital: Number 10.
I'm breathing a bit more easily this morning. Yesterday was a stressful day, and though it ended well, we were all physically and emotionally exhausted. Today, we'll visit Mom in the late morning or early afternoon (they've got docs working on her right now), and Dad will pick up my aunt (Mom's elder sister) from the airport. Tomorrow, we'll collect Uncle John (Mom's younger brother). In the meantime, we'll play things by ear. We've got a week until we get detailed results from the pathology lab, and Mom will use that week to keep on healing. The docs had told us that starting her on some other form of therapy right away (such chemo or radiation) wasn't advisable, given her need to heal first.
Oh, yeah-- Dad thought that I should save the head-shaving for a barber instead of taking the do-it-yourself approach. So I haven't shaved my head yet. I really should; I look like a fat Bruce Lee.
UPDATE 3: Mom's glioma is also called an astrocytoma. The aggressiveness of such tumors is graded on a scale of 1 to 4, with 4 being most aggressive. We've been told that Mom's tumor is probably in the upper end of the spectrum, the implication being that it's a 3 or a 4. You can read about such tumors and the treatment options for them here. According to that online reference, Mom's operation, which removed all of the mass that was visible in the scans, is called "debulking." The rest of the tumor will be kicked into submission through other therapies (radiotherapy or chemotherapy), but the article notes that high-grade astrocytomas are difficult to treat successfully. In other words, we're not out of the woods yet.
Monday, April 20, 2009
Mom's operation has been slated-- last I heard-- for 1PM Tuesday afternoon. Mom seemed largely the same on Monday, with the short-term memory issues and the aphasia. Toward the end of our time with her, however, she began to manifest a strange detachment from reality, insisting that she didn't have a tumor and that the doctors had told her so. When we were about to leave, she got out of bed and said, "I'm going with you guys." Luckily, Mom was still pliant enough that we could persuade her to return to bed, but we asked the nurses to watch over her during the night to make sure she didn't try to wander off somewhere.
My understanding is that Mom will be prepped for surgery (which will involve shaving her head; I plan on shaving mine in solidarity, and Dad and my brother David have said they have planned to do the same), and that the operation should be fairly straightforward. The mass will be biopsied, and further treatment will be discussed. Mom is likely to be returned to the ICU, which is where she was first placed when she was transferred from Mount Vernon Hospital to Fairfax Hospital. For at least the first 24 hours after the operation, Mom will probably be both unconscious and intubated. A drainage tube (or tubes) will be in her skull; her steroid regimen will also continue, since the brain will swell in response to the trauma of invasive surgery.
Much depends on what the doctors see when they finally have a good, clear look at the mass. We know nothing at this point. I'm hoping we'll know a lot more within 24 hours.
The neuro team is visiting Mom at 7AM; visiting hours begin at 10AM, but Dad, David, and I will be there to intercept and talk with the team.
I do a lot of hand-holding now-- more than I've ever done with Mom since, oh, my elementary school days. Mom has little to do aside from lying in her hospital bed and occasionally making the five-yard stroll to the curtained-off bathroom. When life becomes that circumscribed, when a person's world is reduced to just a few activities, every little motion starts to take on significance. Just ask a monk or a prisoner.
We family members watch TV with Mom, or we attempt conversation with her, but conversation never gets that far given Mom's aphasia and short-term memory difficulties. We can do little more than broach a topic, express some very basic, general sentiments about it, and end the discussion with an "Oh, really?" or an "Ah, OK." Each topic gets about thirty seconds' to a minute's treatment. We can create the illusion of conversation if we talk at length and invite Mom simply to nod or answer yes/no questions; as a passive contributor, she's a great conversationalist. Discussions including the notion of "because" are out of the question; the frontal lobe is associated with, among other things, a person's ability to connect cause and effect, and you can't offer a "because" if you're unable to draw causal connections. In other words, if Mom wants to tell us not to do something, she can express a negative imperative, but she can't explain why; the effort is beyond her. It may well be that the reasons are in her head, but the train that leads from her utterance to those reasons has derailed somewhere along the way.
Mom's short-term memory problems and the diminution of her world mean that she likes constant audiovisual stimulation. She might have trouble following the flow of a long newscast or an extended conversation, but it seems to do her good to hear people talking. She's also got a healthy appetite; some of her Korean friends have begun dropping off meals for her, and she attacks the food eagerly, supplementing her drab hospital diet with Korean soups and American-style BBQ ribs. This stimulation, too, is good for her; it embellishes the tactile and gustatory dimensions of her narrowed, simplified world.
Mom's ability to recognize people, even to ask after their welfare, is rooted in her long-term memory, which is largely intact. And that brings us back to hand-holding. It's a very here-and-now gesture, holding hands, and doing it with a friend or relative links the present gesture with memories from the past. When Mom isn't holding someone's hand, she's holding and stroking one of the stuffed animals that sit alongside her in her bed. The simple fact of touch does something for her, and I am-- we are-- all happy to help her on that score. Mom needs this from us... and if I'm honest, I have to admit that we need it from her, too.
Sunday, April 19, 2009
1. Mom is positive for MRSA, but currently, she's only been colonized, not infected. She probably got the bacterium while in the ICU. We had to spend our day wearing disposable gowns and gloves. The ritual for putting these on and taking them off was rather annoying.
2. One of the docs told us a bit about Mom's tumor, the exact nature of which remains unknown. It was described as "aggressive," but one strange result of this is that the tumor's center is necrotic: the tumor's tissue has built up thickly and quickly enough to block blood flow to its interior. I asked whether there were any ramifications in terms of sepsis, and was told no: to the contrary, this means that the center of the tumor will be very easy to remove.
3. Despite the MRSA, which the docs don't see as a huge problem for the moment, Mom's surgery is still scheduled for Tuesday. I asked why Monday wouldn't do and was told that the neurosurgical team is all booked up Monday. Perhaps because Mom has been classified as not in need of intensive care, the doctors feel it is enough to use steroids to reduce the swelling of the edema to keep Mom stable.
4. Surgery to remove the tumor is being considered "the beginning" of Mom's treatment. Much depends on the nature of the tumor itself.
5. On Friday night, some genius almost double-dosed Mom on blood pressure meds. Luckily, my brother Sean was there to catch the second nurse to come in and try to feed Mom the same meds she'd received ten minutes earlier. I'm normally the type to salute health care professionals, but I have to admit I've seen incompetence on a few occasions, often caused by a simple failure to read the damn charts. In 1997, when Dad was in the hospital after his minivan was hit nearly head-on by a drunk driver, a hospital staffer tried to take Dad's blood pressure... apparently unaware that he had placed the pressure cuff over a massive hematoma on Dad's bicep. That time, I was there to catch the mistake before it happened. Strangely, Dad himself said nothing as the cuff was being fitted over his arm.
6. Visiting hours in the new ward are restricted; we can stay from 10AM to 8PM, which means Mom has 14 hours a day with no visitors. I don't like this arrangement, especially after the blood pressure meds incident. Dad and Sean are now taking notes of everything that happens, procedurally, to Mom.
Many thanks to the people who continue to write in and voice their concern and support.