Category Archives: Family

Over Hill and Under Hill

Or: So, just what the hell have you been doing for the last six months, two entire frickin’ seasons, anyway?

Good question. The short form is, “Knitting, physiologically speaking, for a couple of weeks, then going back to work, then adding some ionizing radiation and chemical warfare to the mix just to keep things interesting.”

The slightly longer form goes like this. In the wee hours of the morning on Thursday, June 5th, Stanford contacted me to come in for surgery. This was basically as per plan — we hadn’t known exactly what time I’d be scheduled for.

The process was smooth and efficient: I signed in, went through a little paperwork, changed into the patient’s gown I was handed, and was then prepared for surgery, with a needle here and a needle there. Once everything was in place, my parents were allowed in and we said our pre-surgical goodbyes. I would think that I was still conscious when I left for the surgical chamber proper, but I have no memory of the trip.

The next thing I was aware of was waking in the Intensive Care Unit, sometime late that afternoon. Given that the conversation I’d had with the anesthesiologist and neurosurgeon the day before, I had expected to find myself conversing with the surgical staff while my brain’s left temporal lobe and its surroundings were mapped. My first conscious thought was something along the lines of, “Oh, crap — I slept like an idiot right through the whole thing, and they had to fly, or rather cut, blind. I’ll be lucky if I can still form complete sentences when speaking out loud.”

But no. When the anesthesiologist and neuroscientist stopped by to check up on me, along with my parents, I learned that I’d been a conscious and, difficult though it is to believe, even civil patient. I just happened not to remember any of it. (I suspect that’s why I don’t remember wheeling into the surgery room, either — I’m guessing that I was technically conscious at the time, but that the tapes on which the mental log of the experience was recorded were wiped along with those of the surgery itself.)

Somewhere in all of that, as I tried to assess myself, I had a slightly childish but nonetheless comforting thought: “Whatever else has happened, I have enough mind left that I’ll be able to enjoy WALL•E.” I’d been looking forward to the movie for a while, and fretted that its release would take place three weeks after my surgery. Moreover, I’d made a promise to a friend’s daughter to take her to see it, and I wanted to keep my word.

Physically considering that I’d just had part of my brain removed, and forty small, rigid, steel staples were now embedded in my flesh to help hold the incision shut, I didn’t feel all that bad. True, it was a bit of a struggle to recall, when asked by the staff, just where the hell I was — “Palo… Alto…” — but hey, any job a $300 GPS unit can perform is not one I need to lose sleep over.

My parents, having established that I was conscious and reasonably coherent — I think we briefly exchanged words in German and Spanish, just to verify that I still spoke those — left the hospital to sleep in actual beds. (I was glad of this, having encouraged them to do so prior to my surgery, assuming all went well. I didn’t see the point of their sleeping uncomfortably on-site just to show “solidarity”.)

I also slept, albeit in regularly-interrupted stints — the rules required the nurse on duty to check on me every hour, and “checking on” meant verifying that I could still maintain some semblance of a conversation. Since that seemed preferable to letting me quietly slip into a coma or something similar, I did my best to reply civilly.

My parents returned around 10:00 a.m. the next day, Friday, along with the surgical staff. When the neurosurgeon, Dr. Harsh, indicated that he thought it would be safe to release me that day, my mother initially thought he was joking. It’s hard to blame her, since we’d originally been led to expect that I would spend four or five nights in the hospital. (Mom later expressed her suspicion that my father’s MD probably hadn’t hurt matters, which seems credible enough. Whatever the reason, it was gratifying to hear a member of the ICU staff remark that she’d never seen a patient discharged directly from her department in something like 20 years of service.)

We drove home, and I wrote and posted the previous entry before going to sleep. Of course, sleeping under the circumstances required a bit of arrangement: doing so on my side was out of the question for a little while. Basically, I had to sleep lying… back, rather than down entirely, on a small mound of pillows. Arms at sides, facing the ceiling at something like a fifteen-degree angle. It felt odd at first, but was surprisingly easy to get used to.

Thus ended a long day.

Next Steps

Here’s the approximate timetable (for me, anyway) for the rest of this week.

  • Wednesday: Meet with the anesthesiologist and neurologist. Submit to another MRI. (This is an additional reason to keep my head shaved: during the last MRI, they had to adhere little saline-filled discs to my head, to serve as reference points and target markers: since said discs adhere poorly and imprecisely to hair, this required them to shave quarter-sized areas on various points around my scalp. I’m expecting that they’ll want to use such markers again, so I might as well beat them to the shaving punch. There are few things more dorky-looking than a little pseudo-tonsure halfway between your hairline and the whorl where any normal human would start developing a real bald spot.)

  • Thursday: The main event. Put Dan under, open up his skull, bring him back to consciousness under sufficient sedation that he won’t freak out about the existence of the improvised access panel on his head, and probe him with electrodes while asking him various questions in a mixture of languages to map out the temporal lobe. Remove as much of the tumor as is feasible. Put Dan back to sleep and close him up.

  • Friday onward: Recovery. Give the bones a chance to knit, watch for signs of infection, perhaps keep me somewhat centered in a narcotic fog. (I don’t know that I’m getting any really good drugs, but I can hope.)

  • Tuesday of next week, maybe: Meet with the neurosurgeon and neurooncologist to map out further treatment plans. Chemotherapy is pretty much a given, but as I’ve written before, this is not as grim as it sounds. The chemotherapy agents used against brain tumors are supposedly well-tolerated, so the sick-as-a-dog puking-my-guts-out scenario seems distant and unlikely.

    Radiation is the big question mark. It can be effective in helping to kill the tumor cells, but it can also have some undesirable side effects, in particular upon vascularization (read: the distribution and character of blood vessels within the brain). The fact that this particular tumor is fairly superficial, lying close to the junction of brain and skull, means that the radiation won’t have to penetrate much healthy cerebral tissue to be effective. This is good, and may reduce to the potential downside.

    My father’s tentative inclination is to keep radiation in reserve, but he’s quick to add that the state of the art is advancing rapidly, leaving much published research inherently behind the curve. I suspect that this is one of the topics we’ll go most into depth on whenever we do meet with the neurosurgeon and neurooncologist. (Again, there’s no guarantee that it will be next Tuesday. A Tuesday, most likely, because that’s when the two practice together.)

I expect that I’ll be discharged from the hospital sometime in the middle of next week, but I don’t know exactly when, and I’m not sure that anyone else does at the moment, either. It will be predicated largely upon how quickly I recover and heal, and whether any complications arise on the way.

I will try to keep folks posted as best I can. This depends a bit on when I regain consciousness, how soon I’m allowed to use my computer, whether I can get any kind of network connection in my hospital room, etc., etc. It may well be that the place to look for the earliest first-hand sign of post-op life is my Twitter feed, since in theory I’ll be able to update that from my iPhone even if I don’t have WiFi. (Of course, lately Twitter has me completely beat when it comes to succumbing unpredictably to seizures, so… no promises.)

The Good, The Bad, and The Ugly

(Guest-starring Lee Van Cleef as The Man Made of Scalpels.)

I still haven’t received an actual tangible version of the biopsy results — I will apparently have to send a fax requesting them, and will likewise receive a fax in response. This feels oddly archaic, especially in a day and age where I was handed my imaging results on a CD-R the day after they were taken, but never mind that.

I do know, roughly speaking, what they say, having had a chance to discuss them with my surgeon a little over a week back. They’re a bit of a mixed bag in some respects, but overall, things could be a lot worse. Here, then, is a summary of what we know, albeit not in the order promised by the title.

First, the bad: it’s an astrocytoma, rather than an oligodendroglioma. This means that it lacks the chromosomal deletions that would maximize the effectiveness of currently-available chemotherapy. So it goes.

Next, the good: it’s a low-grade astrocytoma — Grade II on a scale where Grade III is ominous and Grade IV is serious stuff indeed — and it is, as far as we know, not malignant.

This brings us to the ugly, of which there are actually a few separate bits.

  1. When it comes to brain tumors, “benign” is a bit of a misnomer. A red herring, even. Nearly all other areas of the body feature membranes to keep things tidy and compartmentalized. This serves to contain, for instance, a benign skin tumor. The brain lacks any such membranes, so while a benign tumor won’t send out little metastatic seedlets to colonize other parts of the brain, it won’t be confined, either. Given enough time, it will grow and crowd healthy tissues — hence the need to control it.

  2. The odds of completely removing and/or killing the astrocytoma are somewhere between slim and none. The best that can be done is to remove as much of it as possible without affecting the function of healthy tissue, and then attacking what’s left with chemotherapy and possibly radiation.

  3. One of the obnoxious habits exhibited by astrocytomas is a tendency to eventually go malignant, even if they didn’t start out that way. It seems to happen to pretty much all of them eventually. (When you start out with a somatic mutation in p53, the gene that’s responsible for keeping