Saturday, June 6, 2009

not looking good

[NB: This post has been updated several times, so please scroll to the end to see those updates.]

We've been at the hospital since 8:05AM, and the Mom we saw didn't look very good. She was feverish, breathing rapidly and shallowly, largely unreactive, and completely nonverbal-- as close to a vegetative state as I've seen. She's not completely vegetative, however: she did chew and swallow breakfast, and she accepted liquids that we poured into her mouth. But she didn't seem to have the strength to suck down water from a straw, and the nurse had a great deal of trouble trying to get Mom to swallow pills. As recently as last night, that task would have been easy. Apple sauce turned out to be a clever lubricant.

Dad and I are distressed, as you can imagine. The docs will be on their rounds soon, we hope. Meantime, we're finishing up a late breakfast while we wait. In a few minutes, we'll be back by Mom's side. When we left Mom, she had resumed sleeping.

UPDATE, 11:29AM: I have a feeling that Mom isn't leaving the hospital today. She seems so much worse than she was yesterday-- and yesterday, she wasn't too hot.

Dr. Kerr, one of the neurosurgeons who worked on Mom, did some neuro checks with her about 25 minutes ago. His feeling is that Mom is suffering from "global aphasia," i.e., the breakdown of the pathways involved in both productive and receptive aspects of speech. This sounds right: although different family members have tried to reassure themselves that Mom "understands everything perfectly," this is far from obvious.

UPDATE 2, 12:25PM: Mom is being taken for a third MRI. It's not just the family that's worried and frustrated.

UPDATE 3, 5:55PM: We're still here (David arrived a little while ago, and I apparently missed Pastor Jeri). Mom's been visited by a few doctors, including Dr. Benson, a neurologist. His reading of the second (not the third) MRI is that "a significant portion" of the tumor remains. It also appears that the intracranial edema-- and whatever other damage-- extends across the corpus callosum from the left to the right brain. This damage (and I'm unclear on whether this is new damage) is likely the cause of Mom's periodic fevers. We still don't know whether the problem is tumor-related or abscess-related.

I forgot to mention earlier that Dr. Kerr is sticking by his seizure theory despite the EEG results. His reason for this is that it best explains Mom's "in and out" moments.

But sadly, Mom seems to be going consistently downhill for the most part. She slept through lunch, but did awaken for dinner, and has been reactive enough to eat, and even to drink from a straw.

UPDATE 4, 6:10PM: Pastor Jeri has returned, and Mom was visibly happy to see her. About 2 hours earlier, a crew came in to take a chest X-ray. Oh, yes: David reminded me that Mom visibly brightened when David showed her some cell phone pics of Sean's chihuahua, Maqz. She even produced a weak laugh upon seeing Maqz's photo.

UPDATE 5, 10:39PM: A special note: Many thanks to Yma (pronounced "Ee-mah") the nurse, who is easily one of the very best nurses we've had at Fairfax Hospital. She's very much on top of things, is quick to find solutions to problems, wastes no movement, and evinces no confusion. She's also extremely energetic and very friendly. Fairfax is lucky to have her. I kind of wish she could be Mom's nurse all the time. While most of the other nurses attending Mom have also been very good, Yma is definitely a stand-out. She radiated competence during the time I saw her.

My buddy Mike showed up around dinnertime; he met Pastor Jeri and sat with Mom, holding her hand. Mom was as glad to see Mike-- whom I've known since the third grade-- as she'd been to see Pastor Jeri. David couldn't stay too late because he had to go to work, but Mike invited Dad, Sean, and me to dinner at Sweetwater Tavern, which sits about a mile away from Fairfax Hospital. Sean was involved with a concert; he wasn't able to join us at the restaurant until after he'd finished his gig around 7PM, and had driven over to see Mom. He met us at Sweetwater around 9PM, and reported that Mom was fast asleep.

Toward the end of our dinner (thanks, Mike, for treating us), we got into a discussion prompted by Sean re: whether Mom needs to be moved to a facility that can deal more specifically and in a more timely manner with her various problems. Sean's point, if I understood it correctly, is that Mom's problems seem to be piling up, one upon the other, and a more dedicated facility like the National Cancer Institute or MD Anderson might be able to get Mom into MRIs faster, process data more quickly, and treat Mom in a more focused, efficient manner than Fairfax can.

But before we can leap to the conclusion that Mom will get superior treatment elsewhere, we need to find out how these alternative facilities would handle Mom as she is now. At this point, we're facing the possibility of tumor regrowth, and/or the return or worsening of the intracranial abscess, and/or post-operative cerebral edema, any or all of which might be exacerbating Mom's condition.

So Dad, who has been the by-phone liaison for the various health care facilities, has been given the assignment of calling up MD Anderson and NCI to talk with docs at those places about what they might do, were they treating Mom, and whether they truly can, at this stage in Mom's treatment, offer a better alternative for Mom than what Fairfax can provide. Dad will be leaving messages at MDA and NCI tomorrow (Sunday); we hope to hear from the relevant offices on Monday.

In the meantime, we'll be heading back to Fairfax early in the morning, waking up at 6AM again and arriving at the hospital around 8, as we did today. Our purpose is to catch the doctors, ask them about the chest X-ray results and the third MRI, and also to ask the tough questions about what more can be done for Mom. Sean mentioned, yesterday, that one doc had talked about putting Mom on an Avastin regime. Avastin, according to Dr. Meister, is generally a second-line treatment, i.e., it's the weapon you bring to bear against the tumor only after the initial standard therapy has been done. To hear that it might be needed now is disconcerting, but at the same time, if it's what needs to be done, then my feeling is "Hell, yes-- put her on the treatment!"

One thing I personally want cleared up is whether the second MRI, which was discussed by the neurologist Dr. Benson, showed new damage to Mom's brain, or was merely showing us a better picture of damage that had already been there from the beginning (April 16). I had tried to ask a similar question when I'd spoken with the doc, but I didn't ask it very clearly, and his response was similarly unclear as a result.

Dad and I are home; we got here around 10:25 or 10:30. Tomorrow, we do it all over again, trying to catch those doctors during their early rounds. As you probably guessed, Mom is in no condition to be discharged.

Today wasn't easy for me. After hearing from Dr. Benson about the cross-hemispherical damage that was (1) probably linked to Mom's fevers and (2) a possible indication of tumor growth or regrowth, I admit I spent a few moments holding Mom's inert hand and silently crying. Later on, when Mom became more reactive around dinnertime, this felt like the first blooming of spring.

Alas, arduous days like today are only going to occur with greater frequency, because that's the nature of GBM. In a perverse way, Mom is better off not being fully aware of what's happening to her.


Friday, June 5, 2009

where do we go from here?

Dad and I plan to be at the hospital at 8AM on Saturday morning. By then, Mom will have been done with her MRI, and there's the slim possibility that someone will have had the time to look the MRI results over, and will be able to talk with us about them.

We're trusting the hospital staffers, who told us that Mom would likely be discharged on Saturday. There's always a chance that this won't be the case. As happened last time, the docs might feel that Mom's cultures* have come back positive for something, or they might discover that Mom has developed new symptoms, etc., necessitating a delay.

The InfuScience people (the ones managing the daptomycin regimen) have told me that they're flexible: if Mom has to stay an extra day at the hospital, they can schedule around her. Ideally, what will happen is that Mom will have one dose of the dapto before leaving the hospital on Saturday; not long after, she'll be discharged. We'll receive a call from an InfuScience rep later in the day, and will be visited by an InfuScience nurse-- just as happened last time when we started the vancomycin regimen-- on Sunday. Since we now know how to administer doses through Mom's PICC line, there's no need for another training session. The only major change is that the dapto will be administered only once per day, and will take only 30-60 minutes to empty into the bloodstream, as opposed to three hours. Blood samples will be taken once a week to determine how Mom is responding to the dapto.

Beyond Sunday... I suppose the main goals will be to (1) understand and attempt to eliminate the source of Mom's aphasia and cognitive impairment (the key to this is the latest MRI, which ought to tell us what's actually going on in Mom's head), (2) get her safely through the daptomycin regimen and back onto the chemo- and radiotherapy schedule, and (3) get her bone flap replaced with synthetic bone once the dapto regimen is finished in the next 6 or so weeks.

Beyond that, we'll be looking to get Mom through her 6-week chemo- and radiotherapy calendar. At the same time, because her surgical site will have been opened a third time for the new bone flap, we will once again have to be mindful of Mom's healing, taking pains to guard against even the most minor infection.

None of this will be easy, and the burden falls mostly on Mom, who at this point might not even fully understand the challenges that await her. I know it's my own nightmare: to be faced with a dire situation, but to be unable to do anything about it because I don't even realize how dire it is.

NB: If my narrative often sounds more like a dry recitation of facts than an attempt to weave an interesting story, that's partly because I'm using the blog as a sort of note pad for my own benefit. It may be necessary, at some point, to present a doctor with a chronicle of events. Instead of trusting myself to keep the story straight in my head-- which will never happen-- leaving this testimony in the semi-permanent medium of cybertext means that I can retrieve data at will, im'sh'al-Lah. Or in this case, im'sh'al-Google.

*The most recent set of cultures were to be held for 48 hours.


Friday afternoon update

Mom's been quiet today. Dad and I got to the hospital at 6:25AM, but this turned out to be for naught, as the docs hadn't made their rounds in the non-intensive section. So we fed Mom her breakfast. She ate the whole meal.

Around 10, Dad left on some errands, and I was there to witness the parade of nurses and doctors who came in to give Mom her neuro-checks ("Squeeze my fingers! Where are you? What's your name?"), check her vitals, and try to insert another IV into her left forearm. The reason for not using the PICC line has something to do with the delivery system for the contrast dye that will be necessary for Mom's second MRI (which wasn't done last night). The dye apparently needs to be delivered via some sort of high-pressure mechanism, which may rule out the PICC line, because the PICC line feeds into the superior vena cava, directly above the heart. High-pressure delivery might damage something.

Historically speaking, finding veins on Mom's arms is literally hit-or-miss. I watched Mom get punctured six times, mostly just before and during her lunch hour: she was stuck twice on the fingers of her left hand for small blood samples, and four times in her left forearm as three different nurses tried to find viable veins into which to insert the new IV. Mom's agony was heartbreaking, and the nurses were all apologetic. I held Mom's hand as all this was happening.

In the end, the nurses gave up and decided to call in the IV team, i.e., the folks who install PICC lines using special equipment to help them find blood vessels. The IV team doesn't normally put in regular IVs; PICC lines are their specialty. The team hasn't arrived yet, but if they also prove unable to install an IV, some other method will have to be found to get the dye into Mom's system, as the nurses are refusing to allow further poking of Mom's arm. I asked one of the docs to check on whether there was any way at all to use the PICC line; he said he'd look into it.

The various docs came to talk about Mom's condition. I've been told that the MRI will be done sometime today. We'll see. I've also heard that Mom is to be discharged tomorrow, as her only major problem at this point is her aphasia, which may be a function of brain swelling caused by her recent surgery. Mom's rash is also going away; the switch from vancomycin to daptomycin seems to have helped. An InfuScience staffer came by to tell me about the new "dapto" bulbs that Mom will be using instead of the vanco. Mom won't have to dose twice a day, and each dose will last about 30 minutes (which really means 45 minutes to an hour, given our experience with Mom's vanco bulbs). The infectious disease doctor confirmed that Mom would remain on the dapto regimen for another six or so weeks.

The big news is that Mom's EEG shows no evidence of seizure activity. On the one hand, this is great news: Mom is seizure-free. On the other hand, this leaves us to wonder what, exactly, is causing the pronounced aphasia; as mentioned above, the current theory is brain swelling.

Mom was also visited by a physical therapist who helped her do some exercises in bed. Pastor Jeri and Theresa Lindow came by later on. Dad returned from his errands around 2:30PM, arriving at the same time as Sean, who can stay only until 4:30.

I was lucky this morning at breakfast: another WKWS connection, Patricia Weldon (am I spelling that correctly?), very kindly approached the cafeteria cash register and paid for my breakfast. Patricia is a nurse at the hospital; Dad said she's a case manager.

As was true yesterday, today seems to be a day in which both everything and nothing is happening. There have been many visits by nurses and doctors, but little substantive activity. We're all waiting for Mom to get properly fitted with an IV (or to hear that the MRI team will allow the dye to go through her PICC line), and for the second MRI to happen. Beyond that, we're awaiting the MRI's results. Keep those fingers crossed.

Sean left around 4:30PM; Dad and I will remain until 7:30, then will go home. Dad told me that the Doe family, another set of friends and fellow churchgoers, very kindly gave us a whole mess of barbecue and potato salad, so we'll be chowing down on that. It promises to be a welcome relief from the endless conveyor belt of hospital cafeteria food. The cafeteria's food isn't bad, but eating there day after day, two or three meals a day, becomes both expensive and monotonous. Getting home as late as we do, and waking up as early as we do, we haven't had time, this past week, to make meals to take to the hospital, so this comes as a relief. As has been true of Mom's Korean friends' food deliveries, we're thankful to the Does and to others for their kindness.

UPDATE: Infuriating news: there was apparently a communication snafu. According to Dad, the case manager called the MRI team and discovered that the PICC line was fine after all. On the one hand, I'm seeing red that no one checked this more thoroughly. On the other hand, I'm angry at myself for not having done anything to stop the nurses from inflicting all that purposeless pain on Mom.

UPDATE 2: Dad and I are home as of about 7:35PM. We left the hospital at 6:50PM, right as they were wheeling Mom out for the long-awaited MRI.

UPDATE 3: A quick correction: the Doe family gave us a lot more than BBQ beef and potato salad! Holy frijole, they gave us an entire picnic basket of food! Many thanks.


Thursday, June 4, 2009

home as of 10:30

It was indeed a long day, during which not much happened. Mom didn't talk very much; her aphasia is more pronounced than ever. We never got any EEG results, and the only conclusion we heard after the pros had read the first MRI was, "We need another, more detailed MRI." This didn't happen during our watch, but might happen during the night. Mom didn't get transferred out of the ICU, either, but we agree that that's a good thing: she gets more frequent care in the ICU than she would in the non-intensive section.

The real bright spot for Mom, after visits by the hospital chaplain and Pastor Jeri, was the arrival of Kay Wood, a family friend and fellow churchgoer. Ms. Wood had made plans last week to visit Mom at home today, but since Mom wasn't at home, Ms. Wood adapted to the situation and came to the ICU. Dad and I were happy to see her, and she did a marvelous job of chatting Mom up. I could tell by Mom's expression that she was doing her best to follow what Ms. Wood was saying.

We helped Mom with her meals, cutting her food up for her, sometimes feeding it to her and helping her drink by bringing the drinking straw to her dry lips (Mom hasn't been hydrating enough). Dad helped her lips out by applying some lip balm provided by the hospital. We've had to do this on several occasions, not just this time around.

Sean is with Mom as I write this; he kindly stopped over at the hospital in the evening, and will hold vigil by Mom's side for some time before he, too, goes home.

Dad and I have been told to come early again if we hope to catch the docs, so once again, we'll be waking up at 5AM and making the run over to the hospital. Traffic is great at that time of the morning: at 5:45AM, rush hour has only barely begun.

I need to make something clear to the readership about my frustration with how things have been going. I realize that the hospital isn't really to blame for most of the delays. We learned that Fairfax Hospital has only two MRIs for the entire campus, so there's always a backlog. We also learned that the folks involved with taking and interpreting the EEGs are outsourced: they're with some firm that contracts with the hospital, a fact that adds another bureaucratic wrinkle to the big picture. Delays are therefore a sad fact of hospital life, and little can be done to speed up the process.

In my grouchiness, I've been critical of the inconsistent way in which the MRSA protocol has been followed and enforced by certain staffers (the protocol itself strikes me as highly illogical), and I've talked about other problems we've had while in the ICU and elsewhere. As a result, I may have given you a negative picture of Fairfax Hospital. If so, I apologize. As a family, we're tired and frustrated and worried about Mom, and this affects how we process hospital business. But the staffers at Fairfax-- doctors, nurses, and everyone else-- have shown their overall competence time and again. As stressed as we might be, it's only fair to note that these professionals are probably just as stressed, and often seriously overworked. The nurses we've had, especially lately, have been kind, courteous, and helpful. The doctors all seem to be on the same page; I haven't yet encountered one who appeared totally clueless about Mom's case. Everyone is obviously reading the charts.

I can't promise that I won't vent on occasion about mistakes or other unsatisfactory aspects of hospital life, but I do need to be fair to the good folks who work at Fairfax. They're not perfect, but they are doing a very good job, and we have no regrets about leaving Mom in Fairfax's capable hands.

And now... bed. Up in six hours.

Whoa-- UPDATE: I just received a call at 11:05PM from Mom's nurse. Mom is being moved out of the ICU to the third floor, i.e., the non-intensive section.


another MRI?

I heard from Sean (he and David arrived during lunch) that Mom is slated for a second, more detailed MRI, as the results from the first don't seem to give a clear indication of what's going on inside Mom's head-- specifically, the blood flow inside her brain, and the extent to which that circulation is nourishing the remnants of the tumor.

When I was up in Mom's room (I'm in the cafeteria as I type this on my BlackBerry's minuscule keyboard), a nurse came in and gave Mom an injection through her stomach to counter the possibility of DVT (deep vein thrombosis).

A Presbyterian chaplain named Betty visited Mom, and as she was leaving, Pastor Jeri arrived. I suppose you can't overdose on prayer (or can you?).

Sean is up with Mom now; Dad and David are sitting across from me in the cafeteria. We're all pretty quiet.

More later.


what we now know

What we now know, after arriving at the hospital at 6:20AM and intercepting a doctor at 6:45, is that Mom's rash is definitely the result of the vancomycin-- yet another thing she's allergic to. She's going to be switched to daptomycin.

What we still don't know, frustratingly, is what her MRI and EEG results are. This was the reason why we chose to arrive at the hospital so early today: to learn those results. The doc assured us that he'd ask the relevant departments to get back to him with the data, but this is roughly the same assurance we'd gotten last night. I'm not hopeful.

Mom was asleep when we gowned up and walked into her room, but she woke up not long after we'd entered. She's still aphasic; when the doctor saw her, she was unable to say her own name. Strangely, she was able to whisper my name, and the name of the current president. She couldn't tell us what the month or year was, but when the doc asked, "How many fingers am I holding up?", she immediately gave the correct answer: "Two." The doc says this sort of aphasia is to be expected, given the parts of the brain that have been affected by the tumor, its resection, the subsequent infection, and the second surgery. The stoppage of Mom's anti-seizure meds probably didn't help matters. I think they're going to start her on those again, or they already have done so. (UPDATE, 11:56AM: They did start her up again.)

It promises to be another long day.


20 years

Twenty years ago, it was 1989. At the time, I was a college junior, studying abroad-- first in Nice, France for a month-long présession, then in Fribourg, Switzerland for the better part of a calendar year. 1989 was also a year of world-changing events. June 4 is when the Tiananmen Square incident occurred. It's also the year that the Berlin Wall came down; I and a group of college friends went to Berlin a week after the wall fell. Finally, it's the year Nicolae Ceaucescu and his wife lost control of their dictatorial stranglehold on Romania; they were captured after an uprising, and were summarily lined up against a wall and shot.

It's been said that Kim Jong Il has been very mindful of what happened in Romania, as he has no wish to share Ceaucescu's fate. I admit I wouldn't lose much sleep if he did. In the meantime, I hope he enjoys watching the West celebrate the 20th anniversaries of some of the signal events of the end of the 20th century.

For myself, I look back at my time in Switzerland-- one of the very best years of my life-- and wonder how different my life would have been had I known then what I know now, especially had I known what would be happening to Mom.


Wednesday, June 3, 2009

this blog is not Twitter

For those who don't know: Twitter is an online "social networking" service that might qualify as a subset of blogging. To blog is to write an online journal about any topic you choose; to Twitter is to do the same thing, but using only up to 140 characters. In other words, Twittering is highly condensed, rapidfire blogging, and because it's easily done from one's cell phone, Twittering often makes more sense for people who want to give the world real-time updates as to what's happening right at that moment in their lives. While this sort of blogging continues the erosion of modern Americans' attention spans, it does have its advantages, such as when a group of Twitterers happen to witness a car accident or a bar fight and can Twitter about it in real time. One has the option of finding and "following" certain Twitterers. This allows "followers" to know, up to the minute, what that Twitterer is thinking. If the whole thing sounds a bit twittish, well, I agree that it is, but it's the "follower" notion that makes Twitter ideal for social networking. If that's what you're into.

I'm a blogger, not a Twitterer. I don't do real-time updates, often because I'm in the ICU and unable to blog while there. For that reason, hours will go by before you, Dear Reader, have a chance to see a new update. I apologize if this doesn't satisfy your craving for the latest news, but there's little I can do about the situation. Please be patient. If you have an urgent question, call us either at home or via our cell phones. You can also email me or leave a comment on the blog. I encourage this, because I blog often enough that I'll probably respond pretty quickly to any comments you submit. If I don't respond, it's probably because I haven't had time to crack open my laptop.

We cool?

(More on Twitter here.)



Many thanks to Sue LaPlant and to the Washington Korean Women's Society for the wonderful flowers that arrived at our home today.


awaiting results

Mom apparently had her MRI earlier than expected, and I was away when it happened, writing up my earlier blog post and awaiting a phone call from either Dad or Sean. I was a bit peeved that Dad didn't tell me about Mom's MRI before I got back into the ICU around 4:30PM. Despite the early MRI, however, we were told that the results would not be known to us until the docs had managed to work through their backlog (this makes it sounds as if Mom is always the lowest priority; having one of the most aggressive forms of brain cancer apparently doesn't cut it when the hospital triages its patients).

Dad and I decided to leave the ICU somewhat early-- around 7PM-- in order to go home, get some dinner without paying a fortune for it (we've been eating at the hospital cafeteria a little too often), and get to sleep early. We'll be waking up around 5AM and arriving at the hospital around 6:30AM in order to try and intercept the docs, who are often frustratingly hard to catch.

Our hope is to hear about both the MRI and the EEG. The EEG will give us some indication of whether Mom is, in fact, seizing. While Dr. Kerr is leaning toward the seizure theory to explain Mom's oscillating mental state, this remains a surmise pending confirmation. The MRI, meanwhile, will give us a better idea of whether Mom's brain is being affected by the remains of the tumor, or by yet more infection (the latter seems less and less likely: Mom's blood cultures indicate no new bacterial growth), or by some other factor. Dr. Kerr reminded us that the brain tissue will have reacted to the recent surgery, probably by swelling, and this in itself might be enough to explain what is happening to Mom.

I still have no clear idea about the rash and its relationship to Mom's other symptoms.

Though I was peeved at Dad for not keeping me up to date, I made him dinner when we got home. How could I not, right? Dad's been a real trouper; he fed Mom her breakfast, cut up the pieces of her lunch to allow her to eat it on her own, then fed her again at dinner. Mom seemed, at times, a bit too weak to feed herself; at other times, she was able to grasp and manipulate food either with utensils or (as happened with a dinner roll) with her hands. For most of the day, Mom was quiet, talking to us mostly through her facial expressions and body language. But she smiled for me before I left for the evening, and that's all I wanted from her.

We all felt bad about leaving Mom alone after 7PM, but Sean very kindly drove to the ICU to be with Mom a while, starting from 8:30PM. I'm glad he did this; I'm glad Mom didn't have to face the evening with nothing but her retinue of wheezing, beeping, clicking machines for companionship.

Another round tomorrow.


a quick review of ICU protocol

I've written about this before, in bits and pieces, but here it is again in one place as a reminder to people wanting to visit Mom in the ICU:

1. You can visit at any time except during doctors' rounds: 7:00-8:30AM, and 7-8PM.

2. You cannot bring food or drink into the ICU.

3. You may not use your cell phone.

4. Only TWO visitors at a time are allowed inside the room with Mom.

5. Real flowers are not allowed inside the ICU, but silk flowers are fine.

6. Mom is still under a MRSA protocol, so you must gown and glove up before entering her room. This is also true when Mom is in the non-intensive wing. Upon leaving, you must de-gown and de-glove before crossing the threshold back out into the regular world, and must wash your hands immediately after crossing the threshold.


possible seizures

Dad and I have been at the hospital since about 8:50AM today. Mom's been getting visits from various doctors and nurses. At 11:40AM, Dr. Kerr, one of Mom's neurosurgeons, stepped into the ICU to talk about Mom's situation. His suspicion-- to be confirmed by an EEG (done earlier in the morning; results pending) and an MRI (bumped from this morning to this evening)-- is that Mom's "in-and-out" mental state, in which she sometimes seems lucid, then seems to go quietly off the rails, may be indicative of seizure. This isn't particularly surprising news; glioblastoma multiforme is a cancer that tends to produce seizures.

Dad and I hung around until Mom had received her lunch (she was eating breakfast when I came up from the parking lot); Sean had come by in the morning, then left for a rehearsal. He's back with Mom in the ICU now, with Dad. I'm in a quiet waiting room, writing all this down. David told us that he wouldn't be able to make it today.

Bizarrely enough, Mom's vital signs are fantastic. Her heart rate, which had been in the 80s for days, has been down to the 60s for the past two days. Her blood pressure, which is usually below the "classic" 120/80, partly thanks to meds, seems about normal. Her respiration is also calmer-- in the teens instead of the 20s. But those vitals belie the situation: we still don't know what, exactly, is causing the altered state, and I haven't heard a straight story about what's causing the rash (you'll recall that there are three competing theories), nor do I know how all these things relate to each other.

Mom might be moved out of the ICU because of her good vitals. As mentioned, she's had the EEG, and is awaiting an MRI. We're all curious and anxious about the results of both: the EEG might give us a clue as to whether Mom's current problems are indeed seizure-related, and the MRI can tell us more about what's happening inside Mom's already-wounded brain.

We probably won't have more news until later this evening, after the MRI is done. I suspect we'll be hanging out here until we have concrete news, which might take us until after midnight, like last night.


Mom in Neuroscience ICU

Mom is spending the night alone in the ICU. We were at the hospital from 4:30 to midnight, and will be back there in the morning. Doctors' rounds are from 7 to 8:30AM, so we'll be leaving home around 7:30AM or so. We're all anxious about the results of the upcoming MRI.

When I saw Mom before leaving tonight, she seemed somewhat more lucid and less aphasic. Unlike earlier in the day, she was able to tell me my middle name. She failed, however, to remember the year of my birth. Gently reminding her that I'll be turning 40 soon was of no help: she knew what the current year was, but couldn't do the math. She simply gave up trying to work the problem out, lapsing into silence like a person who suddenly begins pretending that a problem doesn't exist.

And as per usual, Mom eventually told me to just go home. "Go" is what she tells everyone. It's shorthand for "Don't look at me when I'm like this," or "I don't want pity or sympathy." I acquiesced without a fight, knowing I'd need the sleep, but gave her two kisses before de-gowning (MRSA protocol as always; it's a bit like being labeled a leper).

We'll be contending with the monster in Mom's brain again tomorrow. Here's hoping nothing has metastasized.


Tuesday, June 2, 2009

back in the ER

We're back in the ER as of 4:30 today. We left home around 3:45 and, not trusting MV Hospital after our last experience there, we drove Mom to Fairfax.

Mom had seemed groggy before an afternoon nap. She had also sounded a bit distant and confused, and had been wincing, as if in pain. Dad tried to give her some Tylenol, but she repeatedly refused it.

Sensing something was up, I asked Mom to perform some coordination exercises for me, using her index fingers, one at a time, to "swoop" between my own outstretched fingers. She performed less well with her right hand, which is what I expected, and not cause for concern in and of itself. As the nurses had done about a thousand times a day while she was in the hospital last time, I asked Mom to grab my fingers and squeeze them, then do a series of push/pull exercises. She performed these as well as she had at the hospital.

But when I tried to ask Mom what my middle name was, or whether she wanted to see a doctor, or whether she wanted to take the Tylenol, she simply stared at me and said nothing.

Dad and I let her drift into a short nap while Dad called some docs at Fairfax Hospital. When Mom woke up not long after, she said, "Oh, my" and held her head, obviously in extreme pain. She gladly accepted the Tylenol this time, and after I asked her a few more questions, I saw that she wasn't even answering with a simple nod or shake of the head. I asked Dad to check Mom's temperature, as she had been patting her own cheeks and neck as if she were checking for a fever. She was over 102.

Mom had taken the Tylenol at 3:30PM. We were on the road at 3:45. Significantly, she didn't try to resist when we told her she was going to the ER: she obediently put on her shoes and helmet, and got in the van with Dad's assistance. Dad sat in the back seat with Mom, massaging her temples as we drove.

Right now, I'm in the ER waiting room, waiting for my brothers, whom I texted along with my third brother, Mike. Mom and Dad are inside, having a history taken. I imagine Mom will get a bed in a few minutes. Sean texted that he is on his way; David will arrive after work.

UPDATE: Mom has once again been admitted to the Neuroscience ICU. She's being transferred as I write this (10:05PM). We haven't gotten a coherent answer as to the source of Mom's rash (which has now spread all over). One doc suspects the vancomycin; another advocates the "contact dermatitis from the electrode leads" theory. Another possibility is infection. The docs are also doing a blood culture; results will be available in 24 hours. Still no word on the CT scan, and we have no clue as to whether there's some sort of causal relationship between/among the rash, the fever, and Mom's altered state.

Mom has been "in" and "out," cognitively speaking. Sometimes she's coherent enough to know today's date, where she is, and who we are. At other times, she looks at us and says the wrong name, or utters what sounds like gibberish. I'm impatient to know the CT results. I want to know what's going on in Mom's head.

If it turns out that Mom has an infection that might be related to the PICC line, the line will have to be taken out, and another one will have to be put in.

UPDATE 2: Mom is scheduled for an MRI in the morning. According to Sean, who visited her first, the doc says that the CT scan is unclear, but we could be looking at either tumor regrowth or infection in the brain, either of which could affect her cognitive ability. Tumor regrowth has been my fear for a while; it's why I'd been agitating for an early MRI after the second surgery. It sounds morbid, but I'm hoping the problem turns out to be bacterial.



Mom's trip to Dr. Tonnesen (the radiation oncologist) today has been cancelled and rescheduled to the 17th of June. This reflects Dr. Tonnesen's own conversations with Dr. Leiphart, Mom's neurosurgeon, who has contended that Mom's incision needs more time to heal before radio- and chemotherapy can resume. Mom has an appointment with Dr. Leiphart on the 11th; he'll be examining her surgical site on that day.

The healing won't be over once the incision has been declared healed, however: Mom will once again have to have her head opened up in order for the new synthetic bone to be placed in line with her skull. This replacement won't happen for several weeks, and after it occurs, Mom will once again have to be watched to make sure she heals without infection.

In other news: the front lawn has received its buzz cut. I then fixed Mom lunch, and now she's napping, which can only be a good thing. The state of her rash is about the same as it was yesterday, despite the Benadryl.


lawn and calls

Dad has given Mom her morning pills (9AM) and hooked her up to her vanco (10AM). I'm about to mow the front lawn, which looks as if it needs a shave. Dad's next task is arranging Mom's MRI-- a move we requested to track the progress, if any, of the remains of the tumor. As Dr. Fine at the National Cancer Institute said, all it takes is a single cell for the process to begin again.

Mom's got her bandages on, secured to her scalp by a stocking cap, making her look for all the world like a little lost elf as she sits in the living room, watching Korean TV.


Monday, June 1, 2009


Mom has developed a rash all over her torso-- a possible allergic reaction to the intravenous vancomycin. Aside from the rash, Mom is displaying no other symptoms, and the rash itself is not causing her any discomfort. Nevertheless, it's a very worrisome development, so we're contacting the InfuScience on-call nurse to see what can be done for Mom. If it turns out she's allergic to vancomycin, she'll have to switch to another antibiotic. Mom has proved to be allergic to a variety of medications. Her body, it seems, is a minefield.

UPDATE: The nurse seems to think the rash isn't a big deal: it's likely contact dermatitis from the stick-on leads that had been placed on Mom's body to aid in monitoring her vitals. Apparently, this isn't an emergency; Benadryl is the recommended treatment. Another nurse is coming Wednesday, so perhaps we'll know more then.

UPDATE 2: The nurse mentioned in the first update was actually the second nurse we called. The first nurse, who took two hours respond, just got back to us (10:15PM) and voiced my own suspicion: that Mom might be having a reaction to the vancomycin, possibly as a result of the antibiotic's cumulative effect over several days (Mom had been on vanco at the hospital). However, her opinion was that this reaction isn't an allergic one, and like the other nurse, she too recommended Benadryl to treat the rash.

UPDATE 3: It occurred to me that we'll be seeing a doctor tomorrow, as Mom has an appointment to see Dr. Tonnesen, the radiation oncologist. While we're in the Radiation Oncology department, it'll be easy to snag a nurse, who can take an actual look at Mom's rash. Because we'll be physically at the hospital, it'll be no big deal to get Mom to a doctor (or the ER) if it's discovered that Mom needs immediate treatment. For now, though, we're not stressing too much: over the past few hours, Mom has shown no other ill effects, even though we started her on another IV bulb of vanco.

UPDATE 4: There's a lot of online discussion about allergic reactions to electrodes. Type the search string "allergic reaction to electrodes" into Google and you'll see what I mean.



Dad had a morning doctor's appointment today, as well as a pharmacy errand, so I did something very unusual and woke up early, prepping Mom's breakfast, giving her her 9AM meds, then administering her IV vancomycin at 10AM. The phone rang often, so I took over Dad's normal role as house secretary. Around 12:15, I prepped Mom's lunch, then checked and flushed her IV; while this was going on, Sean came over. Dad got back home around 1:30 or so; Sean left around the same time, then Pastor Kim arrived around 2:30. An InfuScience nurse, different from the one who visited us twice over the past few days, will also be visiting us a few times this week-- not merely to tend to the PICC line and Mom's incision site, but also to draw blood for testing.

Life has changed a lot since Mom's recent return home. She's been told, repeatedly, that her helmet is there for her safety, and that she has to wear it every single time she needs to move from place to place. Alas, the only way to make her follow this rule-- a sensible one, given her skull's delicate condition-- is for me to hover close by and to jump up at the first sign that Mom is planning to stand up. Mom has already beaten me to the punch several times, especially if I'm away from her for some reason, and I've had to run over to make sure she didn't keel over. Mom also tends to pick at her PICC line, and still tries to run her fingers over the depression at the top of her head, where some bone used to be. In each such case, one of us family members has to tell Mom to stop. Her normal response is a grumble, but she usually desists.

As far as walking goes, Mom seems to shuffle along fairly well, usually without a walker, though she still tends to list to the right when walking. I hold her shoulders while walking behind her, prompting her with gentle guidance. Sometimes Mom tries to shrug my hands off, but most of the time she accepts what I'm doing. When Dad walks with her, he tends to hold her right hand. Each of us is mindful of Mom's weaker right side, and we take pains to stand close by her to make sure she doesn't suddenly collapse.

It's 5:20PM now, and a visiting physical therapist just left. She checked Mom out and determined what areas Mom needs to work on, and will be back on Thursday.

Day by day. That's how it goes.


Sunday, May 31, 2009

there and back again

My brother David and I took a trip by ourselves out to Skyline Drive while Dad stayed home with Mom. Mom was visited by one of her oldest and dearest friends from the 1970s today, and also received a care package of food from another close friend.

When David and I got back to the house, it was close to 10PM. Dad walked me through the IV antibiotic procedure, which turned out to be fairly easy, thank goodness. I'd been having nightmare visions of shooting air bubbles into Mom's heart or doing something equally terrible to her, but the procedure basically consisted of swab this, unscrew that, check for air bubbles, insert this, inject slowly, etc. So simple that even an idiot like me can do it.

When midnight rolls around, I'll be removing the antibiotic bulb and flushing Mom's line with saline followed by heparin. And that, folks, will end the day.


thank you, MVPC!

A church member kindly drove over and dropped off a huge amount of food from today church picnic. Our family thanks you all!


passing the test

Dad seems to have passed the test: the visiting nurse has adjudged that he is now officially ready to give Mom her IV antibiotics on his own. Tonight, Dad will be teaching me the same procedure so that either he or I can do it. I'll probably teach the technique to David and/or Sean, if they're willing to learn it. I'm sure they will be.


digression: the US unveils a spanking new superlaser

The term "superlaser" is familiar to geeks who read Star Wars spinoff novels. It refers to the enormous, planet-destroying laser mounted on that infamous, moon-sized space station known, charmingly, as the Death Star. It seems that America now has its own superlaser-- one that will ostensibly be used primarily for scientific reasons, such as the creation of fusion reactions. (The laser will have military applications, but not necessarily as a weapon.)

Me, I want us to use that laser (well, it's actually a collection of lasers) for only one purpose: to melt the head of that huge, bronze Kim Il-sung statue in Pyongyang-- the one in front of which tourists are obliged to place flowers and make a show of reverence. I'd love that.

Unlike in the movies, laser beams generally aren't visible unless they're traveling through a medium filled with floating particles (e.g., smoke), thereby causing diffraction, which makes the beam visible to those standing alongside it. No diffraction, no visible beam. Ah, how wonderful it would be for a group of tourists to look up on a clear day and see, to their shock, Kim Il-sung's head smoking and melting for no apparent reason.