Surgery, diagnosis, prognosis
Until July 24, 2009, I had never been a patient in a hospital. And it was only well into adulthood before I had ever even been to a doctor’s office for an official checkup. My Dad was an old-school family doctor. He’d get home from work after a long day treating patients (many of whom paid him with fresh vegetables, frozen fish or Ozarks wine), look us kids over quickly just to make sure we weren’t bleeding anywhere, send us back out into the yard, and then reach into the fridge for a cold can of Hamm’s Beer before settling into his easy chair to watch Walter Cronkite and cuss at Republicans. That’s what preventive medicine looked like, Ed Holton-style, circa 1968.
But what I was about to undergo on July 26, less than 48 hours after being admitted to ORMC, was the equivalent of walking into an amusement park for the first time ever, skipping right over the popgun shooting galleries and the rides with bumper cars and spinning teacups, then scarfing down a great big greasy corndog and heading straight for the Zipper Of Death, or whatever it is they call the scariest ride at the county fair these days. Only at my fair, that ride was called Brain Surgery.
I had been admitted on Friday and scheduled for surgery first thing Sunday morning. On Saturday, as I was going through all the preparations, my younger sister Ellen arrived from Los Angeles. She would soon be followed by my older siblings: Kathleen from Las Vegas, Tim from St. Louis and Brian from Philadelphia.
I knew I was in great hands medically and was actually looking forward to the surgery. I had by this time been moved into a comfortable private room on the eighth floor of the hospital, which is reserved for neurology cases. The room had a TV, but I didn’t even turn it on. Who needs TV at a time like this? Inside my head, I already had a built-in reality show going on called I’m A Brain Tumor, Get Me Out Of Here! And the docs were going full steam ahead to get it into full production. But oddly enough, no one had even asked me yet whether I had any insurance. And on my wristband, my name was still misspelled as “Shawn Holton,” based on the phonetic spelling of what I had mumbled to the ambulance crew. I don’t think anyone had even asked me yet for basic ID. At one point during my stay, someone from the hospital business office wandered into my room to ask if this was going to be “self-pay.” And to think just a couple days earlier I had been worried about a $15 cab fare.
My neurosurgeon’s name was J. Christopher Wehman. He would perform the craniotomy surgery. It involved making an incision just above my right earlobe, extending upward for just two or three inches before looping forward toward my right eye. That was enough to create a skin flap that could be peeled back to remove just enough skull bone to get in there and get at the tumor. (I don’t even want to think of the Black & Decker tools involved in that part of the process.) But the bottom line is that Dr. Wehman was able to remove most, if not all, of the core tumor and some of the surrounding mass. Then he replaced the bone and sewed me back up, the shape of my zipper-like incision vaguely resembling a question mark, appropriately enough. This was great news. Lots of brain tumor patients have large, gnarly masses growing inside their heads that cannot be operated upon at all, or can be only partially removed in order to avoid doing collateral damage that would affect their quality of life. The follow-up report said: “Postoperative MRI has been reviewed by Dr. Bobustuc, revealing a complete resection of right temporal lesion with no hemorrhage in the surgical site…Patient is feeling well with no headache, sensormotor deficits or speech change.” Thanks Dr. Wehman. You’re my new hero. The next time I see you, I’m standing up and giving you a hug (which I actually did a couple days later.)
The day after surgery, it was time for me to meet Dr. George Bobustuc. He would introduce himself to me as the neuro-oncologist at Orlando’s MD Anderson Cancer Center who would shepherd me through the several weeks of treatment that were to follow surgery. He was very nice. But the news he broke to me wasn’t so nice. The tumor had been analyzed, and it turned out to be what is known as a “Glioblastoma Multiforme,” or GBM, which is the most common, malignant and aggressive type of primary brain tumor one can get. The World Health Organization rates GBMs as “‘Grade 4” tumors on a scale of 1 to 4. I’m not sure exactly who at the WHO is really into American football, but to the best of my understanding a Grade 1 is like having a good high-school middle linebacker put a clean hit on you in a state championship game and a Grade 4 is more akin to having Dick Butkus tackle you hard enough to knock out all of your teeth and then (after the referee’s whistle has blown) reach through the earhole of your helmet, rip out your brain, throw it to the ground and stomp it into the frozen tundra of Lambeau Field during a vintage NFL championship game. Yikes! (Not to mention Yuk!). GBMs have microscopic cancerous tendrils that extend out into the brain like roots, so that even after one tumor is removed and carted off the field another Dick Butkus can quickly grow back in its place — or somewhere close by. So the goal of follow-up palliative treatment is to kill as much of the residual cancer as possible to forestall that process. As Dr. Bobustuc informed me, it’s essentially incurable. But he was careful to add that much progress has been achieved in treating GBMs just in the past three or four years, and a new pill-form chemotherapy drug called Temodar was showing lots of promise. In later meetings, he told me the successful removal of most of the mass of my tumor almost guaranteed that I’d have at least two more years to live, and probably a couple more beyond that. Not bad, I thought, for a disease where life expectancy from the time of diagnosis is typically measured in months rather than years. Some more encouraging news came from Dr. Bobustuc many days later after further chemical and DNA analysis of my tumor revealed that it was likely to respond very well to the standard chemotherapy and radiation regime. A gene called MGMT, at very high levels, can actually defend cancer cells from the docs who are trying to zap it. Not a good thing. But in my case, the MGMT level is “very, very low” — less than 5 percent, he said. Many patients show levels from 60 percent to 100 percent. So, Dr. Bobustuc said, between the removal of almost the entire tumor mass and the genetic report: “Everything that could be positive about this is positive.” That was definitely a quote I wrote down verbatim.
So thanks Dr. Bobustuc. I might have to start calling you Dr. Bobutkus. Please, please kick this tumor’s ass and stomp it into the Frozen Tundra.
NEXT UP: We’re almost up to date. I just learned today that my chemo and radiation starts Thursday August 20 and will last until Wednesday September 30. But there’s lots of other stuff to talk about in between.