already in bed

Mom nodded "yes" when Dad and I asked her whether she was tired, so she's on her way to bed now. She liked her dinner, but as she had been doing all day, she kept listing to the left on the couch as if she didn't possess enough strength to keep herself upright.

Whatever has been wrong with Mom since Tuesday is still wrong. Maybe what she needs right now is indeed sleep. We plan to take her walking tomorrow-- the weather promises to be great-- but I'm not hopeful that her strength, awareness, and motivation will have returned by the time we go to the park.

We really need to talk to the docs about her condition. She spent the day almost totally nonverbal, though Dad says that she spoke a word or two not long after she'd awakened. Just before Mom got up from the couch to go to bed, Dad asked her some vocabulary questions. They were the same sort of questions that she could have answered even yesterday, but tonight, she didn't say a word. Switching tactics, Dad held up a slip of paper with the word "table" on it and asked Mom to read it aloud, but she still said nothing.

As I mentioned before, it's probably the edema. At some point, tumor growth or some other factor may push the swelling beyond the limits that Decadron can control. What do we do then? I honestly don't know, and that's another reason why it's important for us to see Mom's doctors.

We'll see how she is tomorrow. I'm left to wonder how she'll be come Thanksgiving.


UPDATE: One symptom of carboplatin, for 10-30% of patients, is extreme fatigue. Also: I asked Dad to check Mom out to see whether she'd been injured in her fall. Dad reported that Mom had a red spot on her left buttock and a small scratch very low on her back. I can't imagine what caused the scratch; she sat down hard on the couch, then slid heavily to the floor after I'd grabbed her arms.


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a walk and a fall

I got Mom to eat a large lunch. She was starved after having slept through all of yesterday. I also put her through her paces with the spirometer; she didn't do as well as I'd hoped she would, but we have to make allowances for her having missed a day of doing anything.

We had wanted to get Mom walking; the plan went from taking her to Pentagon City to taking her to the local park to making her walk the wheelchair ramp to walking some laps inside the house. Mom was cold inside the house, even though it seemed warm to me, so I added some layers to her clothing and took her walking through the house's upstairs level. She did well, but she fell at the beginning, right at the moment when I turned around to kick an ottoman out of the way. All it took was an instant of inattention on my part, and Mom was down. Luckily, she didn't fall hard; I was able to catch her before she sat down all the way. The couch itself helped cushion the impact; she's not hurt, but I was left feeling awfully guilty for not having realized just how off-balance she was.

Dinner for Mom tonight will be budae-jjigae, which I haven't made in a while. Still not sure what I'll be making for Dad, but pesto shrimp is likely.


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belated thanks

Belated thanks to my dad for the dinner he bought yesterday. He did it to give me the night off, and even though I couldn't taste any of it, I enjoyed the texture and could imagine the taste.

Thanks, Dad.


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she's up

Mom's awake and showering. She greeted me with a dull nod when I saw her; her affect-- i.e., her emotive capacity-- remains more blunted than usual. There's no smiling, no frowning, nothing. Although we've gotten used to seeing Mom in a "bland" state ever since her first surgery, she's had moments where she laughs or smiles. Since Tuesday, though, Mom's look might best be described as bored or depressed or exhausted. There's something hangdog about her demeanor that seems oddly appropriate for the cloudy and rainy fall weather we've been experiencing. I've been wondering whether she's depressed and in need of more stimuli. Most of her Korean friends have stopped visiting, except for Mrs. Merrill, who had made a point of routinely dropping by on Mondays to see Mom. But Mrs. Merrill will be away for several weeks because of surgery, so the visitor schedule promises to be more sparse and erratic than usual.

To address the issues of exercise and the need for stimuli, we'll be taking Mom out today, either to Pentagon City or to Fort Hunt Park, to make up for our failed attempt to go out a few days ago. Mom needs a chance to walk around and see the sights. We'll also be exercising Mom's lungs with the incentive spirometer, and even though she's going to be walking today, we'll be making her do heel raises, squats, and whatever else we can think of to work her legs.

I continue to worry that Mom's edema is new, and is the result of increased tumor growth. Her next MRI is six weeks away, but we've seen what can happen when a tumor is given eight weeks to grow. Mom's third tumor may very well be growing through her carboplatin treatment; it's hard to say. I'm not sure how happy I am with carboplatin in general; it feels like a step backward instead of a step forward. Carboplatin is an older drug and has been around a long time. It has been in use for brain tumors far longer than Avastin; the latter was approved for brain cancer only this past May. Carboplatin's method of interaction with cancer isn't as well-understood as it should be, and to make matters worse, a patient can lose a lot of carboplatin through urine, thereby diminishing whatever therapeutic ability the drug has. Mom's on a diuretic, which makes me wonder how much carboplatin she's actually retaining.

At the same time, Mom's had only one infusion of carboplatin, which makes it difficult to evaluate the situation. The eternal frustration for a cancer patient is that, when you embark on a certain course of therapy, you have to stick with it to see whether it's effective. Effectiveness is rarely instantaneous. So the gamble for Mom is that (a) the carboplatin is effective, but will need the full eight weeks to show this; or (b) the carboplatin is ineffective, and Mom's tumors will have had eight weeks to grow largely unimpeded. Because this is brain cancer, and because Mom's first surgery rendered her incapable of making important decisions for herself, the agony of choice falls to the rest of the family, especially to Dad and me.

My mind occasionally creeps back to the aggressive treatment options available at far-off hospitals like MD Anderson and Duke University Comprehensive Cancer Center. But the original reason we opted not to try those places is still in force: Mom's home, family, and primary circle of care is here, in northern Virginia, and NCI is also one of the foremost research centers for cancer out there. Even if we did elect to move Mom to a far-off hospital, we'd still be facing the same gamble: a treatment regimen that would last weeks or months, and whose outcome couldn't be definitively known until the treatment had finished.

Anyway, Mom's up today. She's done showering and is brushing her teeth, and even though she doesn't know it yet, she's got an active day ahead of her. I suppose that's something to be thankful for.


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asleep all day

It's been a very quiet day for me and Dad. Mom's been asleep the entire time, and I don't blame her. We had ripped her out of her normal routine, which generally involves leaving the living room couch at 11PM, spending some time in the bathroom (ablutions, meds, a new change of clothes), then getting into bed by 11:30 or midnight. We took Mom to the hospital after midnight last night; I apologized to Mom for having done all that to her.

I told Dad that we're now replaying Tuesday and Wednesday, but the difference now is that there's a bit less anxiety since we're not worried about problems as immediate as stroke. I hope Mom wakes up at a more normal time tomorrow; she usually sleeps about 11-12 hours, and with any luck, she'll be alert and energetic tomorrow morning, the way she was on Monday, before all this happened.

This coming week, Mom's got blood work, an appointment with her plastic surgeon, and an Avastin infusion to look forward to. There's a lot on her plate.


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also discharged

Good news: Mike's dad has been discharged. He's got a follow-up appointment next week. Likely causes of his heart condition seem to be age and heredity. As is true for many heart patients, this implies a need for closer surveillance of all matters cardiothoracic from now on. Kudos to Mike's mom for keeping it together, calling 911, and being with her hubby. Kudos to Mike for driving up to northern Virginia from his far-off residence, for sitting with his dad, and for staying so on top of the situation. As both of our families are discovering, calm and common sense are absolutely essential in a crisis.


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update

Dad's awake, and he tells me that he already texted Pastor Jeri last night. She got a second text message from me today, since I hadn't been told of the first message; I hope this doesn't feel like overkill to Jeri.

Side note: this must be one of the few times I've ever woken up before my father.


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zonked out

We left the ER around 5:30AM and got home a little after 6. I personally didn't get to sleep until sometime after 7, and for some reason I'm now awake, despite not having slept even six hours.

Pastor Jeri is supposed to visit us this afternoon, around 3 or 3:30, but if Mom's not awake by 2 (it's after 1PM, and even Dad's not awake), then we'll have to cancel.

My buddy Mike's dad has gone in for more tests, the results of which are pending, and which will indicate whether surgery is warranted. Mike has been keeping me posted on his dad's progress. I actually tried visiting Mike's dad last night, but was delayed, which led to problems. I'd had to prep dinner for my parents and couldn't get out of the house until about 7:30. I was aware that Fairfax Hospital had changed its visitation rules for the flu season, so I knew that visiting hours ended at 8PM (come to think of it, they end at 8PM even when it's not flu season), but I had been hoping that the hospital would let me slip past the doors even if I were a tiny bit late. I arrived at the hospital at 8:05, and all the doors I tried at both the main building and the cardiac building were locked to outsiders. The one door that was unlocked was manned by a security guard who was adamant about not letting anyone in. "Sorry, no choice," he said. I drove back home and called Mike's dad, talking to him for a few minutes. He sounded much stronger than he had a couple days ago. I apologized to him for not having visited, and resolved to make it to the hospital in plenty of time to visit during visiting hours the following day.

So yesterday-- and this morning-- turned out to be an adventure. There was one abortive trip to the hospital, and then a post-midnight trip to the ER to find out that Mom's brain wasn't bleeding.

For the moment, the house is quiet, except for the occasional ringing phone. I feel sorry for both Mom and Dad. It wasn't easy for them-- or for my brothers-- to be dragged out in the middle of the night. At the same time, though, I'm not sorry I insisted on taking Mom to the ER: if something had been seriously wrong, and we hadn't gone, I'd never have forgiven myself. We still don't know what's going on with Mom, but at least we've ruled out any immediate dangers. Now if only we can get in contact with her regular doctors...


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Mom about to be discharged

Mom's blood work came back and was deemed "OK" by the doc, except for the elevated glucose level, probably an effect of the Decadron.

I'm in the waiting room of the ER, and Mom will be discharged soon. The doc suggested that we speak with Mom's primary care physician (Dr. Royfe, in Mom's case); implied in his tone was that Mom's regular caregivers (Meister, Benson, et al.) were the people we should consult about aberrations in Mom's behavior.

This leads us full circle back to the frustrating situation we were in: we'd been trying to contact these very people to get some clues as to what might be wrong, but had had no luck contacting any of them.

Anyway, we're out of here. Next stop: home and bed. At least we know we're not looking at stroke.

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update on Mom

The CT scan shows edema in the brain, but no bleeding. The doc said we would need to see the results of the blood work to know more, but the CT supports the stroke nurse's ruling-out of stroke.

According to Dad, the nurse had asked Mom to read aloud, and Mom proved able to do this. Purely by coincidence, I had asked Mom to read aloud from the National Geographic magazine she'd been holding while she and I had been in the sub-waiting room together.

Mom still likes reading, though it's not obvious how much she understands anymore. Sometimes she seems only to comprehend the rhythm and flow of the printed language in front of her; at other times she seems at least somewhat aware of the content. Lacking most of her frontal lobe, however, Mom has difficulty piecing together a coherent "big picture"; as you recall, the use of logic is one of the executive functions located in the frontal lobe.

As I mentioned, we're still waiting on Mom's blood work. It's 4:10AM, and I don't know how much longer we'll be here. Poor Mom's sleep schedule has been thrown off yet again, so I wouldn't be surprised if she ended up sleeping all day.


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update from the hospital

When I left Mom in her ER berth, her vitals were:

Pulse 83-- high for Mom.
Pulse Ox 98-- quite good.
BP 161/94-- high for Mom.
Resp 18-- high for Mom.

I talked with the nurse a bit, and gave her a vague sketch of Mom's history. Curiously, Mom's meds didn't show up on whatever screen the nurse was looking at-- a problem we've encountered before, because the hospital's various departments don't have a unified database. This boggles the mind.

Dad had given me his list of Mom's meds and had sent me in with Mom. This proved unwise, because Dad is able to quote chapter and verse about Mom's history-- her meds' respective dosages, frequencies, and purposes, etc. I can recite the dates of Mom's four surgeries, but quoting exact dates for things like her daptomycin regimen and her various visits to NCI (and to her other docs) is a more difficult task.

I'm not sure that Dad is convinced we should even be out here tonight, but I can't shake the feeling that Tuesday's day-long slumber was an ominous sign, and that Mom's reduced functionality since Wednesday morning does not bode well.

A doctor and a stroke nurse are both slated to see Mom. Dad's back in the ER berth with her now; Sean is waiting out front with me as I type this entry. The ER isn't allowing more than one visitor into the ER at a time. As I said to Sean, this is problematic: Dad's better at quoting Mom's history, but I'm better at asking the pertinent questions. He and I should be facing the docs together.

I'm hoping the stroke nurse will swoop in, do some neuro checks, and declare "It's not a stroke." It probably isn't a stroke: I'd associate a stroke with constantly deteriorating functionality, but in Mom's case, it seems more as if her functionality clunked down a distinct level, then immediately stabilized.

The problem these days is that it's hard to know what's going on in Mom's head. She's so uncommunicative that we have little choice but to examine her closely

Sean's got to wake up at 8AM, so he might not be able to hang around long.

Will write again when we know more.

UPDATE: Dad came out and Sean has gone in. David is on his way. Dad says the stroke nurse came by, and has ruled out stroke. This still leaves open the question of what might have caused the recent changes in Mom's behavior (e.g., digging through her soup with her fingers-- something she hasn't done in a while).

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ruling it out

The contrast between Mom's demeanor before and after Tuesday has finally persuaded me that she needs to be taken in for an examination. Per some insights I got from my buddy Mike, we want to rule out the possibility that Mom might have suffered a stroke. We're driving her to the ER now.


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another appointment

We'll be taking Mom to see Dr. Mirali, her plastic surgeon, next week to have a lump or swelling looked at. The lump is above Mom's left ear, and according to Dad, he first saw it about four days ago. Dad had mentioned the lump to Dr. Wheeler, the infectious disease specialist who looked Mom over on Monday, but the doctor felt that the lump didn't represent anything urgent. He also said, however, that there would be no harm in consulting Dr. Mirali, whose office is down the hall in the very same medical complex.

So Mom's got an appointment with Dr. Mirali on Tuesday. Meanwhile, Dad has called Dr. Meister's office, NCI, and Dr. Benson's office about Mom's perseveration, weakness, and general lack of affect. NCI passed the buck to Dr. Meister, since Meister is in charge of administering Mom's Avastin and carboplatin. Dr. Benson, Dad was told, is out this week; his assistant Karen was supposed to call us back, but as of this writing, we've heard nothing from her. Dr. Meister himself is supposed to call us back today, but we've heard nothing from him, either. He's called us in the evening before, however, so we may simply have to wait for him to get around to us.

Well, more precisely, Dad's going to be the one waiting: I'm off to Fairfax Hospital to check on Mike's father (last I heard: still no diagnosis) and to hang in the cardiac wing for a while.


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not verbal at all

Mom hasn't been verbal at all since yesterday, and while she's now going through the motions instead of sleeping almost the entire day, as happened Tuesday, she still seems sluggish and weak. Once Dad gets back from his dental appointment (our life over the past few months has been punctuated with these appointments), I'll ask him to contact NCI about what's happening to Mom, and whether it's a lingering side effect of carboplatin.

On the speech therapy front, it's been frustrating. Dad has tried several times, on different days, to contact Dr. Benson's office (he's Mom's neurologist), but has only been able to leave messages on their machine or with a receptionist. It may be necessary to drive over to the office and speak with someone in person, if not with Dr. Benson himself. Why the man is so hard to get hold of is beyond me.

We're probably going to take Mom for a walk in a mall today, maybe Pentagon City, much as we did back when my aunt was here. It's too cold and dreary to risk exposing Mom to the weather for an extended period, even one as short as ten minutes. I hope Mom performs well during the stroll; her weakness worries me.


UPDATE, 1:30PM: Mom's been acting strangely as she eats her lunch. I caught her using her fingers to dig around inside her soup, and she insisted on using her fingers to eat some Korean short ribs. I tried several times to get her to stop, but she went right back to using her fingers. This is perseverative behavior, and it fits my intuition that Mom's day-long sleep is a sign of something wrong. when my father gets back from his dental appointment, I'll be asking him to call NCI and whoever else might be of help.


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food and visit

We'd like to thank Pastor Kim's wife for coming by and dropping off some delicious Korean food. Mom is enjoying it right now for dinner.

I've been away at Fairfax Hospital, hanging out with Mike and his dad, who seems to be doing somewhat better. He's pain-free today, but the docs still don't have an official diagnosis, which is frustrating for all concerned. More tests to follow; despite my frustration at the lack of information, I'm glad the hospital is being thorough. We want Mike's pop around for a long, long time, and if that means doing a lot of tests to figure out what's wrong, then so be it.


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straight for the carbs

Most of Mom's time in bed yesterday had been spent sleeping, so today, when she tottered out to the living room/kitchen area with Dad, she was ravenous. The meal I gave her was pork tenderloin and rice, leftover chicken soup, and veggie sticks with bleu cheese dressing as a dip. She immediately attacked the rice, and has been taking her time with the rest of the food.


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awake

Mom's awake, and is getting out of bed with help from Dad. I'll be making them lunch, then heading off to Fairfax Hospital around 1:30PM.


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another dad in hospital

My buddy Mike's father was admitted to Fairfax Hospital yesterday after suffering severe chest pains. Mike and I spent several hours at the hospital yesterday evening, and we'll be going back there today. His dad is in the cardiac telemetry wing, undergoing a battery of tests. As of last night, his chest and head were both hurting, which left us worried when we left the hospital. It appears, though, that his condition is now stable, and that his fibrillation has stopped as of this morning. Preliminary testing seems to indicate that the incident was not a heart attack, but we're still looking for an official diagnosis.

Please keep Mike's dad in your thoughts.


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to worry, or not to worry?

Mom spent her entire Tuesday in bed. Whether this is cause for alarm is still up in the air. Dad thinks Mom just needed extra rest; he noted that her vitals were fine, and that her behavior, during the few times that she was awake, seemed consistent with how she's been behaving for weeks. So maybe Dad's right: maybe all Mom needs is some extra rest. All the same, I told Dad that if Mom is just as sleepy on Wednesday, we're calling the docs.


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pork tenderloin for dinner

Tonight, we continue the saga of our efforts to eat up the meat we've been keeping in cold storage. On the menu tonight: slow-cooked pork tenderloin. My last attempt at cooking any sort of tenderloin happened when my relatives were here from Texas. It ended in failure as I discovered that broiling a filet mignon is perhaps not the best way to treat it, even though oven-broiled filet mignon recipes are easily found online. The slow cooker produces meat of amazing tenderness; the only thing it really lacks is the caramelization that comes from a good sear.

Along with the pork: some cinnamon apples, mashed potatoes, and salad. Ought to be good.


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