Monday, June 8, 2009

once more unto the breach

I arrived late this morning, around 9:15AM, but still managed to be there when Drs. Kerr and Leiphart stepped into the room. The upshot: the surgeons have to get clearance from Dr. Yoho, the infectious disease specialist managing Mom's current antibiotic treatment, but in all likelihood, Mom will be going in for a third surgery tomorrow, June 9.

"I don't want to go in and just do the same thing," said Dr. Leiphart, "and get the same result," i.e., surgery followed by yet more MRSA infection. His plan is to treat the infection as aggressively as possible, which will probably include scraping out the cavity in the brain where the main mass of the tumor had been removed. This will, in turn, mean cutting out "a couple millimeters of tissue," according to the doc. He will do his best to preserve Mom's "executive functions," but when I asked him how Mom will turn out-- cognitively and in terms of motor coordination-- his answer was a frank, "I don't know."

The surgeons are also going to speak with Dr. Yoho about the feasibility of feeding a catheter into the brain cavity so as to drip the antibiotic solution directly onto the infected tissue. I imagine we'll know more after this discussion occurs.

Dad has a long list of to-dos today, including a rather urgent dental appointment, as he lost a tooth last night. He'll be by the hospital much later today. He's managed to get in contact with MD Anderson, but is displeased that NCI hasn't gotten back to him yet.

Mom is lying so quietly on her bed in the hospital, fast asleep. She has no idea what's ahead of her. And I'm glad.

UPDATE: Mom ate nearly all of her lunch today, and even tried to vocalize a few times. One utterance was a distinct English "no" when I tried to feed her some smashed [sic] potatoes; another was a distinct Korean "aigo" (an interjection that can mean anything from "whoops" to "oh, my!" to "woe is me!") as she was fussing with her own clothing.

Mom was also able to shake her head no, something she hadn't done yesterday, despite being able to nod yes. Today, both "no" and "yes" were in evidence as gestures made with her head.

Just got news from Dad (who's been both at home and driving around on various errands) that some anesthesiologist called him, and it sounds as if surgery is a definite go for tomorrow. Like my brother Sean, who has expressed a great deal of frustration over how Mom's treatment has been turning out, I'm anxious about the prospect of more brain tissue being removed. Part of me feels that any surgeon's first instinct will be to cut out the problem, and I wonder whether tomorrow's surgery is really necessary. Why not catheterize the cranium and flush the site with antibiotics directly, then wait and see?

Dad's been trying to get in touch with both NCI and MD Anderson about Mom's treatment. Before Mom gets tomorrow's surgery, it would be nice to have a second opinion. The problem, though, is that the surgeons at Fairfax consider the infection problem to be urgent enough to warrant this very sudden surgery. The problem for us, as a result, is that we've barely had time to process the news that Mom will be undergoing a third operation, and further, that we'll have no time to ask anyone from a different health care facility to look at Mom and offer another opinion.

I hate this goddamn tumor. From the beginning, the tumor's aggressiveness has left us no time to consider options and organize treatment in other than a hasty, ad hoc manner. The infection is to blame as well, of course, but it's an unforeseen consequence of the initial surgery. The tumor is the primary culprit. Sean's frustrated question to me was something like, "Are they just incompetent, or is it really this hard to treat Mom?" I don't know; I'm not a medical professional. Mom has many nodules in her forearm veins, making it hard to give her a regular IV. Her lungs have always been susceptible to things like bronchitis and pneumonia (she may have pneumonia now, in fact, according to her recent chest X-ray). Her tumor is of the worst possible type. It turns out that she's among the 4% of people who get this sort of post-operative MRSA infection. How much bad luck can one woman have?

"Nothing they've tried has worked," Sean said, highlighting the competence issue. Mom's debulking surgery led to the infection. The radiotherapy and chemotherapy had to be stopped because of the infection. The second surgery obviously didn't get rid of all the infection. The post-surgical vancomycin regimen resulted in a serious, body-wide rash. The attempts to put an IV in Mom's forearm led to a series of-- as it turned out-- unnecessary needlesticks. The current daptomycin regimen apparently isn't working fast enough to combat the infection in Mom's brain. As you, Dear Reader, can imagine, this sort of track record doesn't make us hopeful that tomorrow's surgery will accomplish much of anything. There isn't even a guarantee about Mom's cognitive and physical states after the operation. So I understand what Sean is feeling, and although I'm inclined to believe the docs are doing the best they can, part of me wishes they could do even better. Much better.

In comparing this negative post to yesterday's somewhat more positive one, I think the reader should be aware that, from here on in, it's going to be an emotional roller coaster for everybody. There will be bright spots, of course; we can always hope that the tumor can be stopped in its tracks for a few years and that Mom can regain some of her original self over time. That would be the best outcome. But the bright spots will be far outnumbered by the difficulties that lie ahead. That's not pessimism talking; it's realism. If wishful thinking helps you, fine. It's not my way. I've never counted myself among the relentlessly optimistic; I find such a worldview to be a recipe for insanity. Hope has its place, but it's bounded by the dictates of biology and physics. False hope is the leprous offspring of one's refusal to acknowledge what's actually happening. So I'll keep hope, but won't give in to false hope.



imp said...

The thing about traumatic brain injury (and this surgery definitely qualifies) is that nobody really knows what a body will decide to do. A good surgeon has to say "I don't know".

I've seen patients go from devastating damage to walking, talking, functional people over weeks or months. It happens. It happens more when family is involved, when therapy is creative and interesting, when laughter and touch and smiles and music are part of the healing process. You're giving her those things, and will continue to do so.

Granted, your mom has a number of scary complications and what-if factors involved. This hell you're in - hang on. It's a long ride. But she has a chance at meaningful, happy, loving life after this worst is over. And she has just the son to give it to her.

You're a pretty damned amazing guy, Mr. Hominid. Don't lose sight of the value of your awesomeness, of your humor, of your dick and fart jokes, of your brother's music, of your intellect, of helping her pet a chihuahua, of love. If she has nothing else, she has you.

Take care of you while you take care of her. I'm here if you need anything, or if you don't.

Malcolm Pollack said...

I think I speak for all of your readers when I say our thoughts are with you, your Mom, and your family, Kevin, as you face this terrible ordeal together.

Malcolm Pollack said...

Oh, and what imp said, too.

imp said...

After reading your update -

False hope isn't gonna work for you, Kevin. And I hope that my last comment didn't come across as too pacifying. In rereading it myself, it looks like hearts and flowers, and I didn't intend it that way.

I've spent years as a brain nurse. I know what's going on here - and so do you. That's why hope - hope for happy moments and a good life - is only that. Hope.

Can quality of life happen in the middle of this hell? Yes. Will it? I hope so. For how long? Ya got me. No idea. Uncertainty's a right bitch.

I think the biggest fear right this minute is sepsis. There isn't time to wait and see. That's why the big rush, why surgery has to be done without time for opinions. Once the worst of the infection is gone, the antibiotics will hopefully take care of the rest. After that, then "this worst" will be over, and you can start again to deal with the next evil.

Just know that I care.

Anonymous said...

Remember that the debulking probably DID work as far as the tumor goes. The infection is a separate issue from the cancer. The allergic reaction is also a separate issue.

I have a feeling the docs want to *remove* the infection to avoid exactly the situation that would happen if you just killed the infection by flushing it with antibiotics without removing the tissue: you'd have leftover, dead tissue in the brain that used the be the infection. The previously infected, now dead, tissue could rot and cause sepsis.

There is no defined roadmap to recovery for this type of cancer and all of the related procedures that come with it. As we're experiencing, each procedure comes with its own set of risks. Who knows, god forbid she falls and breaks a leg while being guided to the bathroom. That would cause yet another unrelated problem - just like the infection and allergic reaction are unrelated to the cancer itself.

I have confidence in the doctors currently treating mom but I'm also very receptive to what MD Anderson and NCI/NIH have to say about this.

I understand your frustration with all of this. All we can do is continue to be proactively thinking ahead, when possible, about treatment and recovery for brain procedures and infections and keep mom as comfortable and relaxed as possible.

Preppin hatte

gcotharn said...

Thoughts are with you all.

Augusta said...

I had a great secretary when i was working in a parish in Montgomery Village. Her husband wwas diagnosed with a conditon and complications somewhat similiar to your Mom. From what i remember, things did happen rapidly, and the rollercoaster was the new norm.She would barely abe able to absorb the situation , when within a day, the situation would change . DRAMATICALLY. That being said, your Mom IS in God's loving hands, and I firmly believe that HE has her best interests at heart. It's called FAITH. Your Mom has it- and so do you!

Kevin said...

Imp, Malcolm, GCotharn, Augusta,

Thanks for the encouragement. Much appreciated.


I'm aware these are separate issues and never implied otherwise. The point Sean was making, and with which I can somewhat sympathize, is that Procedure A led to Bad Outcome A1, Procedure B led to Bad Outcome B1, etc. I agree that they're separate issues, but something bad has happened in nearly every instance.

None of these outcomes was intended, of course, but it sucks that they happened. How nice that most of the tumor was excised, for example, but how unfortunate that the procedure led to an infection that penetrated the skull and invaded the brain.

Sean was wondering: "Why couldn't they have anticipated these problems?" Especially in the case of MRSA, which most of the hospital staff (not to mention the home care nurse who visited us) seem to treat as something of a joke-- a fact we see daily in both the inconsistency of protocol enforcement and the blasé attitude the staffers have taken toward the bug.

I realize that there are thousands of possible bad outcomes, and that it's impossible to prep for all of them. But some bad outcomes are more likely than others, and with MRSA as prevalent as it is, I agree with Sean that more could have been done for Mom on that score. Sending her home so early after the first operation with that huge, bloody wound across her head probably wasn't the best idea.

I say all this with 20/20 hindsight, of course, but that's because I'm not a medical professional who can rely on his experience to make better judgments. The pros should be able to make better calls than we newbies can about the likelihood of this or that danger.

One step would be to rely on more than a statistic: we now know, in Mom's case, that it's not enough to gamble on Mom not being in that cursed 4% of people who get such post-op infections. Instead of taking a gamble based on statistics, why not test Mom for a predisposition to such infection? Was there no way to do this?