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 other mutations in check, most anything goes after that.)

  4. With all of the preceding is said and done, median survival time for patients with astrocytomas is eight years and change. For those of you whose statistics are rusty, this means that half of those surveyed live longer, and half, well… don’t.

    This may sound grim, but I have every intention of being on the very far side of the bell curve. I have a first-rate medical team, a pathologist father who I trust will keep me from doing anything clinically stupid, and an incredibly warm and supportive group of friends and family who are stumbling over each other to offer their assistance in any way they can. (More on this last point in an upcoming post.)

    Lastly, the science on this stuff is moving quickly. The current arsenal of chemotherapy drugs is quite recent, and if I’m not mistaken, the weapon of choice against oligodendroglioma only appeared on the field something like six years ago. So there’s some basis for hope that the longevity curve will stretch out before me as I walk it.

Upshot: I’m totally banking on being ahead of the lot of you when they start rolling out the military-grade neural interface packages. I’ll have an easily-reopened hole in my head and a little cavity where they can stash the hardware-wetware bridge. You’ll envy me, suckers.

I’m Not Shipping Up To Boston, Either

Recent events in politics and related news have prompted me to reflect on things I do not have in common with Ted Kennedy.

  1. I did not lead a floor fight at the 1980 Democratic Convention.
  2. I have not had a roman à clef written about me by Joyce Carol Oates.

A trifle more seriously, Kennedy has apparently been diagnosed with a malignant glioma in the left parietal lobe of his brain.

This is similar to what it appears I’ve got, but not quite the same. Going from the most to the least clearly known:

  1. Mine’s in the temporal lobe rather than the parietal.
  2. We don’t know that it’s malignant.
  3. We don’t know that it’s a glioma.

The results of the biopsy should provide the definitive answers on the latter two points. So for the time being at least, I’m in distinguished company, but it’s not very close distinguished company.

That Was The Week That Was

I have just been gently reminded — he said, rubbing his shin and wincing — that it’s been about a week since I’ve posted here. Whoops.

There is, at the moment, not a huge abundance of news to report. On Thursday of last week, my father drove to Stanford and joined the head of Neuropathology there to look at slides of some of the biopsy-sampled cells under an optical microscope. The tentative conclusion is a bit of a mixed bag: it looks, I’m told, like an astrocytoma, but with certain characteristics of oligodendroglioma. The big question remains the same as before: does it feature the co-deletion of chromosomal arms 1p and 19q that are the hallmark of oligodendroglioma, and which presage a higher sensitivity to chemotherapy? Only culturing and genetic analysis will say for sure, and those are still in progress. The current estimate is that I’ll hear something by Monday, May 26th.

In the meantime, I’ve been officially scheduled for surgery on Thursday, June 5th, with another survey MRI and possible additional preliminary work to take place on the 4th.

My father returned to Memphis on Sunday morning, while my sister, who arrived last Thursday evening, proceeded to Orlando on the same day. My mom is still here, and will be staying until late June; my father will be returning shortly before the surgery.

That pretty much covers it as far as hard news is concerned. So… how am I doing?

For the moment, almost eerily well. I’d be lying if I said that the prospect of having a surgeon, however skilled he has already demonstrated himself to be, excise bits of my brain tissue completely failed to trouble my brow. That’s two weeks away, though. The future, as Dick Valentine so sagely observed, is in the future. At this instant, I feel fine. I’ve had no relapses, and the slightly spacy, dissociated feeling apparently produced by the anti-seizure medication has passed as my body has acclimatized to it. More than that, though. I feel focused. Alive. There’s nothing like a reminder that your time on this Earth is finite to reawaken your appreciation for every sight and smell you encounter.

I continue to feel that I’m in the capable hands of experts and professionals. I know it’s fashionable in some circles to regard western medicine and its supposedly impersonal manner with a skeptical eye, but… all I can say is that this has emphatically not been my experience to date. Everyone I’ve dealt with — doctor, intern, nurse, technician, administrative assistant — has been warm, friendly, and accommodating.

Moreover, it’s hard for me not to be impressed by the fact that modern technology has apparently made it possible to poke a hole in my friggin’ skull, proceed to carefully sample my brain tissue with a needle, and have me tromping through the woods with a slight tenderness behind my temple, feeling otherwise none the worse for wear, two days later. If that’s the cold, distant facelessness of western medicine at work, I’ll take that action. I’ll take all you’ve got.

Speaking of modern technology, the small incision above my left ear was not stitched shut, but instead bonded with surgical glue of some kind. It feels great — there’s no nonuniform tension on the skin, and the seal seems to have precluded even mild, superficial infection. The glue appears to be working its way out as the tissue heals: I’m trimming the excess as it does so, and finding that its consistency resembles nothing so much as the gummy adhesive they use to affix removable address labels to magazines before mailing them out.

Lastly, to preclude the question likely to raise itself in the mind of anyone seeing me for the first time in a while: no, they didn’t shave my head. I did that myself, post-surgery, having decided that the small shaved rectangle just above my ear looked stupid. More practically, the biopsy procedure inflicted a few nicks at random points on my scalp: these proceeded to bleed into my hair a bit, and since I couldn’t shampoo for two days post-surgery, I wound up dusting my pillowcase with a light coat of powdered dried blood instead. Yum. Screw that. Best to just be rid of the whole mess. I can at least sponge-bathe a shaven scalp if I have to. (Also, given last week’s record temperatures, this seems quite the opportune time to go with the Lex Luthor look.) I would like to take this opportunity to report that my hair damn near grows faster than my beard. Also, my scalp feels like sharkskin when you rub it against the grain of the hair, which I can’t help but think is kind of cool.

Wednesday, 5/14/2008: Poke, Poke, Poke

The narrative is going to jump around a bit here, for which I apologize. I’m going to fill in the events of the weekend and the days following as soon as possible, but for now it’s more important to keep everyone as up-to-date as I can.

The bottom line from last week’s CT scans and MRIs was simple, if incomplete: there’s a mass in the left temporal lobe of my brain that doesn’t belong there. Odds are that it’s some kind of tumor. One possibility is that it’s an oligodendroglioma. This would be good news, because oligodendrogliomas tend to feature a chromosome deletion that renders them particularly vulnerable to chemotherapy. Another possibility is that it’s an astrocytoma, in which case prospects are not as good.

(Have I mentioned lately how demented it feels to talk about all of this when I feel as fine as I do? It does. Thank you. Moving on…)

Having reached the limits of what could be determined using non-invasive scanning, the next step was to take a small biopsy of the mass to determine its characteristics; that’s what happened yesterday. I was scheduled as an “add-on” at Stanford, which basically meant waiting by the phone for the word to be given. When it was, and sooner than expected, we headed north in my father’s rented car.

The first order of business, once there, was another MRI, this time with little saline-filled discs affixed to various points on my skull as reference points. Then to pre-op, where I changed into the airy gown and met with various members of my “team”: anesthesiologists, nurses, interns, etc. Everyone was incredibly, unfailingly, courteous and a pleasure to deal with.

With the preliminaries out of the way and a quick wave goodbye to my parents, I was wheeled off to the operating room. I was transferred from the gurney to the table, had a second IV line started in my forearm, caught a glimpse of what I presume to be my own skull-content on an overhead wide-screen monitor, and then fell prey to anesthesia’s usual sneakiness.

I awoke a couple of hours later, around 3:00 pm or so, being wheeled past my parents and into a recovery room. At that point there wasn’t much to do besides wait to come back to myself. If I understand correctly, a “frozen section” was performed almost immediately on part of the sample, and the very preliminary results suggest oligodendroglioma. However, there is more, and more detailed, analysis, particularly on the chromosomal level, remaining to be done: those results should filter in in the next day or two.

At any rate, because my surgery had taken place early enough in the day, I got to go home rather than spend the night in a hospital bed, which was a definite plus. I passed on the offer of a wheelchair to take me to the door — I’ve never quite seen the point, since you have to start walking sometime — and instead made my way out under my own power, with a parent on either side.

I slept surprisingly well. The hole in my skull hurts remarkably little, and in fact the biggest impediment to sleep turned out to be the fact that the anesthesia drugs seem to shrink your bladder to the size of a grape. You get up thinking you’re about to unleash Niagara, pad over to the toilet, and then… nothing. Or at least nothing epic. Dribble, dribble, dribble, and back to bed. Lather, rinse, repeat. So it goes.

Anyway, I’m up now, and likely to stay that way for a little while. There’s no further surgery scheduled at the moment; for now we wait for the biopsy analysis results to arrive. Aside from a little residual soreness at the point of incision, and the fact that the roof of my mouth feels slightly sandblasted, presumably as a result of intubation, I feel pretty good. The day is supposed to get blisteringly hot, so I think I’ll go for a walk with my mom before temperatures get too far out of hand.

Friday: The Out-Of-Towners

I don’t remember exactly what time the phone rang, or who reached me first, but the message was from my parents, in tandem, and it was simple: “We decided, individually, to screw waiting. We’re coming out there. Deal with it.”

There are times when you don’t realize how much you appreciate having your wishes disregarded until it happens. This was one of them.

Mom and dad would not be arriving until the early evening; my plans for the day were otherwise few. Rob and Frank met me for lunch at the Falafel Drive-In, a San Jose fixture. This was, by accident rather than brilliant plan, conveniently close to O’Connor, which allowed me to swing by and pick up my imagery CD-R immediately after eating.

Once home, there was not much to do but wait, write, answer e-mail, and fiddle with the imagery. The scan results are all in a format known as DICOM, short for Digital Imagery and COmmunications in Medicine; the Mac applications I was able to find which advertised themselves as consuming that format seemed to have… issues. I decided to switch rather than fight and let the work-issued Windows XP laptop earn its keep for a change.

My parents arrived; after dinner at Ma’s we dropped in on the usual gang of idiots at BSG, and collectively wrestled with the interface of the DICOM-viewing software burned onto the CD-R. The resulting informed consensus: well, yeah, there’s something there. Dad was still on Central time, so we called it a night early. This means I’m now two episodes behind on BSG; general opinion says that I’m missing painfully little. We shall see.

Thursday: Next Steps

Sometime in the afternoon, after the completion of my scans, I got a call from my neurosurgeon, Dr. Jason Lifshutz, expressing his apologies that he probably wasn’t going to be able to examine them for another 24 hours or so.

However, fairly late in the evening, the phone rang: it was Dr. Lifshutz, telling me that he’d had a chance to review the scans and would like to meet on Saturday morning. From the noises I could pick up in the background, not to mention the lateness of the hour, it was pretty clear that he was calling me on personal time: I appreciated both greatly.

I realized in conversing with him that I’d neglected to pick up the CD-R containing the results of my scans before my release, and made a mental note to take care of that the next day.

At some point in all of this I spoke with my parents, both of whom offered to drop what they were doing and come out here. I assured them that this was not necessary, surrendering to the warm comfort of my own bed, cushioned with an additional soft layer of Keppra.