Today I gave my docs the green light to schedule my second brain surgery for next Wednesday afternoon. Everyone — including the outside experts I consulted — agrees that this is the best move to make right now to keep me on track for long-term survival. GBM tumors are not to be trifled with. The plan is to go back into my head through the same portal that they created for the first surgery — as if it were the door to a cuckoo clock. I have authorized the neurosurgeon to remove a 2.3-inch section of my right temporal lobe surrounding the old tumor cavity and including the small area of new concern that showed up on my latest MRI, as well as a bit extra for a margin of safety. Then they’ll just close the cuckoo-clock door and wheel me off to the recovery room. The whole thing shouldn’t take more than a couple hours.
I expect to have a hospital stay of 2-4 days, and have human-wave attacks of siblings rolling into town to take care of the house and the dogs and me until I get back on my feet. That shouldn’t be long at all, based on how I bounced back last July after surgery. And this time I won’t be getting wiped out by follow-up radiation. But depending on what the docs learn from the tissue specimen they remove, I will resume some form of a chemotherapy maintenance program sometime soon.
This surgery will not affect my day-to-day functionality at all going forward, the surgeon says. One of my other docs described this as “some of the most useless real-estate in your brain.” (Thanks for the topical metaphor, Doc. But I’m hoping your medical opinion would have been the same even before the housing bubble burst.) If I were a left-hander, the story would be different. But as it is, the only aftereffects I might experience are some small changes in my short-term memory capacity (which will give me a good excuse for blowing off chores and showing up late for meetings) and some lessened ability to distinguish certain musical notes from one another (so I’m already throwing out my John Coltrane DVD library and replacing it with the Slim Whitman catalogue).
I’ve also submitted the following list of additional side-effects that I’d like to have included with my brain-surgery package:
- The sudden inability to hear the sound of leaf-blowers, right-wing TV pundits and other annoying noises.
- Onset of total blackouts when the Orlando Magic fall 10 points or more behind in the fourth quarter of any playoff game.
- A rare condition known as “Facebook Blindness,” which will render me unable to detect all status updates and discussion threads relating to Farmville or the final episode of “Lost.”
- The mysterious capacity to enter and win this year’s Tour de France, the premier, 20-stage, 2,200-mile bicycle race which begins July 3rd and runs through July 25.
So there it is. My docs are checking with my insurance company to see if those and other deluxe side-effects I’ll think of later can be included under my current coverage plan.
Meanwhile, thanks for all your continued support on this blog. It’s been a huge part of getting me through this ordeal with my spirits high. I’ll check back in with another update as soon as there is news worth reporting and I am able to report it.
PS: I’m accepting any and all additional suggestions for “deluxe side effects” that I can request, so if you have any good ideas please leave them in a comment. This game might even be more fun than playing Farmville.
Just got some good news today: I’m not going to have to pack up and travel to get the outside opinion I requested. The tumor board at the Johns Hopkins Comprehensive Brain Tumor Center in Baltimore has agreed to review my case history and MRI films and render their treatment recommendations in a few days. So I’ll just be sitting tight and waiting for my docs to call with the news. My expectation is that some level of surgery will be part of the recommendation and will be scheduled soon. But at least this time around I will be working off of a strong medical consensus and won’t be rushing to make the decision myself.
(PS: If you’re interested in keeping up with new posts on my blog as this thing plays out, just scroll down the right hand side and click where it says “Site Feed” and follow directions from there to get alerts)
“If everybody is thinking alike, then somebody isn’t thinking.” — Gen. George S. Patton
I have just experienced the most emotionally exhausting, medically educational and ultimately hopeful week of my treatment since my GBM-StageIV brain tumor was discovered and surgically removed last July. In fewer than five days, I’ve gone from thinking my maintenance treatment was proceeding smoothly, to being told my tumor had recurred and may require a radical second surgery next Wednesday, to learning my doctors on what is called “The Tumor Board” were deeply divided about how to proceed and finally to being told my prognosis for long-term survival never looked better and there’s no reason to rush into surgery right away. The big picture looks so good, in fact, that I might now be shipped off to a world class brain-tumor center for a day or two to enhance and refine a treatment plan that could help me outrun this terminal illness for many years to come. It may even be one for the medical history books. Seriously.
If you think reading that last paragraph was complicated, try living through it. This takes a long note just to lay out the basics, so I’ll keep the blow-by-blow simple and no-nonsense (except for the Gunsmoke picture, which I thought was funny). I can’t take the time to describe my emotions or all the complicated medical details at each stage, so you’ll just have to imagine the medical details and insert your own emotions as needed.
Monday afternoon: I went to MD Anderson Cancer Center in Orlando for my routine, bi-monthly MRI brain scan to monitor my response to treatment. The initial report from my primary neuro-oncologist was that the scan looked clean and stable, but that he couldn’t give me a definitive report until a dog-ate-my-homework variety computer glitch was solved: He was unable to access my March brain scan for a side-by-side comparison. Okay. Fine. I went home 95 percent happy and wrote a smartass blog post about how no one is immune from the tortures of the I.T. Department.
Tuesday evening: My neuro-oncologist called me at home and left me a voicemail saying he had finally accessed the March file and had discovered that, indeed, the area around my tumor cavity showed some small changes that might be either accumulating cells killed off by radiation and chemotherapy – or, more alarmingly, new tumor cells. Either way, he said he’d probably be switching me onto some new chemo pills and ordering a one-time jolt of radiation. But since it was a voicemail, I couldn’t ask any questions. I went to bed uneasy (and also pissed at the Orlando Magic for losing Game 2 at home to the Boston Celtics).
Wednesday evening: My neuro-oncologist called me at home and we had a live conversation. He explained the situation in more detail, including that the radiation would in fact be something known as “stereotactic radio surgery” – in which extremely powerful beams of energy are combined and wielded almost scalpel-like to removed unwanted cells inside the body. It’s an outpatient procedure that takes about 4-6 hours because it’s more involved than a simple radiation treatment. My oncologist said he was going to present his plans for me to the hospital’s six-person “Tumor Board” that was meeting at 6 a.m. the next day to review its portfolio of cases. The board includes my neuro-oncologist, my neurosurgeon, my radiation oncologist and three other cancer doctors and surgeons I don’t know. I went to bed uneasy again. Still, I thought, this is going to be manageable.
Thursday morning: I had a previously scheduled appointment with my neurosurgeon, who always likes to meet with me after each MRI to discuss findings. This time he would be coming straight from the Tumor Board meeting so he could give me the latest info in person. I figured he would just wave me on through the toll booth of treatment changes proposed by my oncologist. But then came this shocker: He informed me that the Tumor Board had voted 5-1 to overrule my oncologist and were recommending immediate surgery to remove most of my right temporal brain lobe (where the cancer is centered). He insisted that approach would keep me on the curve for long-term survival with minimal impacts to my physical functionality. He said he would give me time to decide whether I wanted to proceed, but was tentatively slotting the surgery for next Wednesday. I was to call back his office by Friday (today) with a final ‘Yes’ or ‘No.’ This news felt like a kick in the gut. I’d gone from the happy words “clean scan” to the scary phrase “temporal lobectomy” in less than 72 hours. I had to cancel plans for a trip I was making to Kansas City next week. Then I began consulting with my family and friends, my siblings made arrangements to fly down here to help me through next week, and with each succeeding conversation I grew more comfortable with the idea of surgery. “Maybe this will be the way to root this thing out once and for all,” I thought to myself. I went to bed feeling pretty good, but still freaked out by the roller-coaster ride.
This morning (Friday): I wanted one more face-to-face conversation with my neuro-oncologist because up to this point I still had only talked to him on the phone about the Monday scan results and his subsequent treatment recommendations. Besides, I wanted to hear him explain firsthand about being overruled by the Tumor Board and whether he would eventually be on board with the surgery plan. So I went to see him in person. He surprised me by saying right up front that the board’s discussion had been quite heated and that he still, absolutely, did not agree that surgery was necessary at this point – and he told me why. He thinks that even if the tumor has returned, it is growing so slowly that we can afford another month trying new chemo drugs to see if they stabilize it. At that point, if the answer is no, we can do the surgery then. He explained that he sees successive surgeries as a “diminishing returns” option based on “backward-looking data”, not a long-term strategic approach. He told me he would support whatever decision I made, but that I needed to call him back before 3:30 p.m. I left his office thinking, “Crap. My expert doctors are in disagreement, and I’m the one that must make the ultimate decision based simply on whatever gut instincts I managed to accumulate over a 25-year career in an industry that is now going down the tubes.”
Friday afternoon: I began consulting again with family and friends and doctors, and felt like I was racing the clock. I put calls in to the office of my neurosurgeon and radiation oncologist. I asked them if there was time to arrange for an expedited, independent, outside review of my case to help guide my decision. They’re doing that. Meanwhile, the deadline for giving the green light on the surgery passed – the neurosurgeon’s scheduling assistant had gone home for the day. So I told my siblings to cancel their travel plans. It would be at least the following week before I had surgery. I had decided that much, anyway. Then my radiation oncologist (who had supported the immediate surgery option) called me back – not once, but TWICE — to share the most encouraging information of all. He had gone back over my files in even greater detail and convinced himself that my response to treatment so far has been absolutely terrific – notwithstanding signs of the recurring tumor. He said that even if it has returned, it is growing so slowly that we have time to pick our path carefully. “You are in a great position here ,” he said. “We have a great shot at long-term survival. Let’s not squander that opportunity.” He actually said that in all his years treating GBMs in a variety of prestigious institutions, he cannot recall a case as promising as mine.
So he told me he is recommending not only that we take the time to get the outside opinion that I asked for, but that I actually travel to a place like Harvard, Duke, Johns Hopkins or MD Anderson Houston for a couple of days so they can meet me personally and review my case and make their recommendations on both surgical and chemotherapy options. Those are the top four cancer centers in the U.S., if not the world – particularly for brain tumors. My doctors are great, but it will give them an incredible boost to have this outside advice to guide my future treatment. The radiation oncologist actually sounded excited about the prospect of this exercise.
That’s where things stand now: No surgery next week. The Tumor Board members will confer over the weekend, and our goal by Monday is to have picked a center and finalized a travel plan. And then after that, maybe more surgery, maybe more chemo. At least the final decision won’t be in the hands of a washed-up newspaperman working frantically against his biggest and most important deadline ever.
Lesson No. 1 of the week: Never be afraid to ask for a second opinion.
Lesson No. 2: I am lucky to have doctors who are so passionate that they fight over how to treat me, but then show willingness to push the “Stop” button on the standard-treatment, Tyson-chicken-factory patient-processing line and take time to consider the best outside advice available. That — and the fact that they are able to air their own disagreements so vividly in front of me — is proof that I am in great hands.
Lesson No. 3: I love my family, and I have some pretty incredible friends. (PS: Thanks to my sister-in-law Julie for the Patton quote at the top. It was perfect for this post.)
I’m thinking hospitals are very different from typical, corporate workplaces where the “I.T. Guys” are the angels, not the hunchbacks. They are the Promethean firebringers who have blessed the mere mortals they serve with the wonders of computer technology. They strut around like they know it. They decide who gets access to what part of the system, and they know all the passwords. Their belted-on pagers beep and squawk as they roll their eyes and stride purposefully from one crisis to the next, scooting people’s butts aside as they commandeer keyboards and clean up our digital messes. Maybe it’s some idiot who can’t figure out how to import a Microsoft Word file into the C.C.I. system. Or an overly ambitious type who brought in some sophisticated mapping software from home and loaded it onto a company workstation without asking. Or some slacker who was playing online Scrabble on a laptop and infected a network drive. Whatever the scenario, the I.T. Guy is typically the smartest and most technically proficient person in the room — rushing in to save the day whenever incompetent worker bees screw things up.
In a no-nonsense place like a hospital, where business is a matter of life and death, that hierarchy of power is turned upside down. The bearers of the most specialized, technical knowledge here are the system users: The doctors, nurses and medical technicians wearing scrubs and white coats. These people are paid to diagnose problems and make repairs to the most complex machine nature has ever devised — the human body. Besides that, they are in command of multimillion dollar pieces of technology that make regular computers look about as sophisticated as salt and pepper shakers. I imagine the I.T. Guys in hospitals feel more like janitors than angels. They’re out of sight, out of mind; down there in the cathedral cellar with Quasimodo. Their job: “Just come up to ring the bell every hour. If we need anything else, we’ll page you.”
But when I went to the hospital Monday for my bi-monthly M.R.I. brain scan, the I.T. guys had turned the tables back again on the medical wizards. Everything was going smoothly until the time came for me to go over the results with my doctor. He called up the film from my scan onto his computer screen and said it looked great. But because of a technical glitch, he couldn’t give me a final and definitive report. He was unable to call up images from my March 16 scan to compare side-by-side with Monday’s scan. He needed the earlier image to see if there had been any changes in an “enhanced” area that always shows up as a tiny ring of light around the cavity left by my surgically removed brain tumor. The docs have explained to me before that most of the white area is probably “radionecrosis” — or dead cancer cells killed off during the 30 radiation treatments I had back in August and September. But any significant changes in the white area might suggest the first hint of a recurring tumor. That’s simply the nature of this type of cancer I’m living with, and I’m ready to deal with that day if and when it ever comes. Mostly, I’m just grateful that the technology exists allowing doctors to analyze changes as small as one millimeter so they can jump right on it with a new treatment approach.
On Monday, though, my all-knowing, all-powerful oncologist was reduced to a level of helplessness and frustration familiar to any office drone who has ever seen the words “Access Denied” or “File Cannot Be Found” flash across his or her computer screen. Suddenly, he was at the mercy of the I.T. people, who explained that some sort of ongoing server upgrade had made the file he wanted temporarily unavailable. Haven’t we all heard something like that before? A technical explanation that bows down to “cause” but totally disregards “effect”? Translated from ‘I.T. Speak’ into English, it essentially means S.T.F.U. My doc may as well have been a frustrated cubicle dweller trying to call up a critical TPS report, or a newspaper reporter on deadline whose story just got eaten by the system. I actually kind of smiled inside as the man who is in charge of my brain scurried in and out of the examination room repeatedly to call I.T. to get the latest update on the problem. In the flash of a moment, a computer glitch had reduced this miraculous place of healing to just another episode of “The Office.” The I.T. guys were holding all the cards. They had the power again.
The doctor told me I could stay around until it was resolved, if I wanted to. Normally I don’t mind waiting in a hospital, but by that time the place was starting to feel like an ordinary office — and I didn’t feel like hanging out any longer. So I just went home to play with my dogs, and let the I.T. folks enjoy the rest of their day among the angels.
WEDNESDAY 5/19/10 UPDATE: Dr. Bobustuc finally was able to access the earlier scan and he called me Tuesday evening to leave a message saying there was a slight enough change between scans that he’s going to add an extra oral chemo agent to my current regimen and order a one-time-shot of additional radiotherapy. He says there’s nothing here to change the positive long-term outlook for me, but still, I’m glad he is jumping on this aggressively.
A group of current and former Orlando Sentinel staffers got together May 1 for an airboat ride on the beautiful St. Johns River. The occasion was a weekend trip to town by Sandra Fish, who was a reporter at the Sentinel in the early 90s and who now lives in Boulder, Col. We all thought it was only appropriate to take Fish to a Fish Camp. So she joined Mary Shanklin, Roger Roy, Mary Frances Emmons and me at a place called Lone Cabbage Fish Camp about 40 miles or so from downtown Orlando. There’s a great restaurant and bar with a menu including deep-fried gator tail. It’s a fun place to hang out after you buy your $22 ticket and are waiting for your boat’s number to be called. We got lucky because we drew Captain Gil as our airboat pilot. He’s quite a character, as you’ll see in the video. Woe be unto anyone who tries to impress Captain Gil with their own lame tales of trapping alligators, chopping down cypress trees or getting shot in the arm. Capt. Gil is a lifelong river rat. He’s seen it all, and you will not impress him. I love Lone Cabbage. Skimming along in an airboat above the marshes of the St. Johns is one of my favorite things.
The failed truck-bomb attack in Times Square has brought a predictable wave of media hyperbole and fear-mongering about how the “War on Terror” has shifted into a deadly new phase. Next will probably come the kneejerk application of entirely new security measures to prevent this kind of thing from Ever Happening Again. Really? Part of this panic dance is fueled by the overheated rhetoric of government officials. Last night on the news, I heard the chief of staff of the National Security Council state in a TV interview that the suspect had “tried to kill thousands of Americans.” Thousands, plural. No kidding? Has any bombing of this nature, even when well-executed with far more powerful explosives in equally crowded places, ever killed as many as one thousand people? I don’t think so. Most of this kind of thing happens in densely populated areas of the world that we Americans conveniently can’t pronounce. Far more fearsome and successful terror attacks — such as the Bali night club bombing, the Khobar Towers attacks (way bigger bomb) or the sarin gas attacks on the Tokyo subways, or countless more serious car-bombings in the Mideast — have had death tolls in the scores or the hundreds. Likewise with previous truck-bomb attacks on our own soil: The Oklahoma City federal courthouse bombing in 1995 and the first attack on the World Trade Center in 1993.
So what is really so new or unexpected or game-changing about this dud of a bomb, then? My biggest question is “Why hasn’t it happened long before now?” It’s so simple and predictable. Some wacko is always going to be able to go into a Home Depot or a Cumberland Farms convenience store and buy gas-grill propane tanks and some duct tape and then go someplace else to get a few M-80s firecrackers and some fertilizer. This story would have probably been a two- or three-day wonder if the dud bomb had been discovered and disarmed in downtown Des Moines instead of New York. But now because that has actually happened in the media capital of the world, we have to wring our hands and redesign the way we live to keep it from happening again. Are we going to outlaw gas grills and duct tape? Are we going to install security checkpoints at the entrances and exits of Home Depot stores? That’s been the pattern of our response to every new twist in this stupid, ill-conceived, poorly-framed and endless fight: We focus on symptoms and effects rather than root causes. Today no parking outside the bag-claim area. Tomorrow no shoes. The next day no liquids. And now what?
How about this idea for fighting terror: Stop Being Scared. For now, just live your lives and let the cops do their jobs. That’s what we should have done after 9/11 instead of invading and occupying two countries. And maybe one day soon, when we finally figure out how to get out of those countries and stop bombing people in their homelands, they’ll stop wanting to bomb us in ours.