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.


1 comment:

Horace Jeffery Hodges said...

I'm sorry to hear of your mother's current condition. She is fortunate to have a son like you, Kevin.

Jeffery Hodges

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