Unusual, I thought. We weren’t expecting anyone. I went to the door, opened it and — wouldn’t you know it? — there he was. The Big C. He had a twisted smile on his face, a “gotcha” smirk that really ticked me off. I said, “Bug off” and slammed the door.
Three days later I woke up in the hospital. I was hooked up to the usual plumbing and paraphernalia: IV there, surgical tape here. Suction cups were scattered across my chest like lily pads in search of a pond.
Hospital gowns have never evolved — in shape, style or color. They cover you in all the wrong places. Someone should really get in touch with Michael Kors or Armani about this.
I turned my head to the left and saw my wife sitting there. The right side of my head felt weird. I raised my hand. Bandage? No. Something metal. I traced my fingers down along a picket fence of metal staples that was lying just underneath some wisps of hair. Wait, my hair isn’t that thin. I touched the metal again. This isn’t looking good.
My wife came over and stood bedside. “How are you doing?”
Here is what I learned. I had suffered a grand mal seizure and had fallen on top of my wife. She’d had to crawl out from under me to get to the phone to punch in 911.
The cause of the seizure was a brain tumor, a glioblastoma multiforme, one of the most aggressive forms of brain cancer out there. A quick MRI at the hospital — Northwestern Memorial in Chicago — showed the tumor at its ugly best. They had to open up a good portion of the right side of my skull to get to it. And that was where the Frankenstein braid of stainless-steel staples came in. The staples started just behind my right ear and marched some eight inches, curving a bit, up the side of my head.
The tumor was a Grade IV. Later I learned that when it comes to this kind of tumor there is no Grade III or II. So I got the top grade, so to speak.
And then three days later I was out of the hospital. I had a headache the size of Cuba. I was thinking that a hospital bed, with all of its controls and symbols for arranging up, down, levels and planes, which probably cost a million bucks apiece, was still, much like a hospital gown, a work in progress, so goodbye to that mechanical marvel and hello to my really nice bed at home.
Glioblastoma multiforme (or GBM, as it is commonly known) is found in only two or three people per 100,000 in Europe and North America. And it is more common in men. The reason for that is not clear. But it may be due, the experts say, to the fact that “males eat more and increase their chance of eating something that is virus-infected.”
Oh, that is just great. I have been making quite a good living as a restaurant critic/food writer for the past 30 years or so. Looking back on what I have eaten over the years and the restaurants I have eaten in, I have probably been a walking petri dish for viruses. “Who gets the GBM?” the waiter asked.
Me eat? You bet. From Chennai, India, to Moscow to Mexico City to Europe and Canada and across our fruited plains I ate. Could I have eaten something that was virus-infected? You bet your fried calamari at a restaurant on the beach on the Bay of Bengal I could have. Or the horsemeat posing as a strip steak at a restaurant in Verona, Italy? The sushi at a rooftop bar in Moscow? I could go on, but you get the drift.
Here’s what else they say about GBM:
“No links have been found between glioblastoma and smoking.” I wonder how they can be so sure about that. From the time I was around 15 until I quit 30 years ago, I put away my share of cancer sticks. My best years of huffing and puffing were the four years I spent in the Air Force. And those wicked-smelling cigarettes I smoked in Morocco, France and Germany couldn’t have helped.
“No links have been found between GBM and electromagnetic fields.” I think lab rats should dig a little deeper into that. A good part of my time in the Air Force was spent looking through the gun sight of a B-29 bomber. The gun sight was a pedestal affair with all kinds of electronic readouts that we used to track and shoot down bad guys. I cannot say with any degree of certainty that there weren’t heavy-duty electromagnetic fields plowing through my brain cells, but there was something going on in there somewhere that made the graphs and numbers in that gun sight glow.
“Some also believe that there may be a link between polyvinyl chloride and GBM.” Now we’re talking about a virtually bouillabaisse of products that used PVC: plastic piping, ceiling tiles, toys, shower curtains, bottles, packaging . . . the list goes on.
When I said to my oncologist, “Why me?” he answered, “Bad luck.”
The thing is, I didn’t have to get in the ring and duke it out with this cancer. I was 77 years old. Forget the radiation, the meds, the chemotherapy. How much longer did I have to live, anyway?
But that’s not my style. I went along with the program for “battling” GBM.
All things considered, I wasn’t feeling too bad. I was in some pain. I wasn’t sleeping all that great. But I was still filing my columns on time every week. I was out of it a day here and a day there. But with my treatment regimen begun, I had help. Big-time help. Steroids. The steroid I was on, Decadron, had me flying high most of the time, pumped up like a float in the Macy’s parade. And then, just like that I was flying real low, scraping the ground, out of helium.
But those little white pills did what they were supposed to do. Unfortunately, most of it wasn’t good. How do I love Decadron? Let me count the ways: hyper-agitated. I was up, I was down. Sleepless in the saddle. Walking into walls. I was agitated, irritable. Depressed. I had a lot of weird dreams.
I had mood swings that went so far in every direction I was in two time zones at once. I was scaring the hell out of my wife. At one point I was considering moving into a hotel until I came down off my Decadron high.
And then there was radiation therapy in the offing. Radiation therapy. Now there’s an oxymoron to ponder. Radiation is part of the early protocol for all who have the bad luck to get saddled with GBM.
A mask had to be cast to fit over my face. It looked like what might happen if you were to mate a fencer’s mask and a pasta strainer. The idea of the mask was that it aided in the targeting of the high-energy beam needed to zap those bad cancer cells still floating around in my brain, the cancer cells that the surgeon didn’t and couldn’t dig deep enough for.
Five days a week for six weeks straight, I showed up at the hospital. I would lie down on the chute just below the linear accelerator. The mask would be locked over my face. Ten minutes or so getting the treatment. I came through those six weeks of radiation like it was a walk in the park.
Possible side effects of radiation therapy: “Fatigue, severe exhaustion, irritation and damage to the skin near the treatment site. Hair loss.” I had all of the above except for the severe exhaustion. I was still working, filing my columns, putting some finishing touches on my memoir. So much for your radiation side effects. Strong like bull here.
Ever so slowly, I was weaned off the steroids. “You need a break after you finish radiation and before you start chemotherapy,” the radiation oncologist said. “Go somewhere sunny. Relax. Soak up the sun.”
So the wife and I packed a couple of bags and headed out for Scottsdale, Ariz. “Pop four pills [the steroids] 10 minutes before you get on the plane,” my radiation oncologist said. “It will help your brain deal with pressurization.”
“Okay with me,” I said, smiling like I had just hit the chem-lab lottery. We played golf, hiked, ate, drank (a little) and soaked up a lot of sun. Yeah, I knew this was the calm before the storm.
I could drink — beer, wine, Scotch — but “sip s-l-o-w-l-y,” I was told. The reason for spacing a little (very little) alcohol out over a few hours was that booze negated the effects of the anti-seizure drug (Keppra) that I was on. Too much booze, possible seizure.
So knowing all this and what I was faced with down the road — chemotherapy, anti-seizure drugs, MRIs, blood work every other week, I decided, just in case everything went to hell and back, to take things into my own hands. I tutored myself on making pot brownies. Isn’t the Internet a wonderful thing? There are citations — okay, make that recipes — galore for making pot brownies.
I made a batch. I found that the Betty Crocker traditional chewy fudge brownie mix worked just fine.
A piece of brownie about the size of two sugar cubes gave me the same buzz as a double Scotch on the rocks.
Back from a week in the sun, it was time to get down to business with the second act of dealing with GBM. Chemotherapy. I met with my oncologist. I was looking at 18 months of a chemo regimen. Temodar was the drug of choice. Five days in a row, three 140-milligram pills a day. Then I get a 23-day break. Then the cycle starts all over again. And an MRI every four weeks to see if the Temodar is doing its job.
Side effects of Temodar? Constipation (check); unusual tiredness or weakness (check); anxiety (check); blurred vision (check); trouble with sleeping (check); loss of appetite (never happened, which is a good thing considering my work). Nausea (never happened — but then, following protocol, I would pop an anti-nausea pill a half-hour before taking the Temodar). Nausea was my biggest fear. Is it going to happen? Possibly. You can’t rule anything out when it comes to multiple pill-popping.
I am now into my fifth Temodar cycle. And my last MRI showed no change. If the next couple of MRIs do the same, I can come off the Temodar in three months. Then it’s an MRI every eight weeks.
Where is this going? I have no idea. GBM is not curable. The prognosis isn’t great. Two years of life after the removal of the tumor is considered very good.
I decided that I needed more time than that. For one thing, I need to finish the memoir I have been working on for more than six years.
In the meantime I am still writing and doing my weekly radio show on food and wine. As a freelance journalist, I have the advantage of working from a home office. So if I get tired, I step away from the computer and take a nap. Then I get back into my day — a little more writing, seeing some friends, some cooking. More writing.
I am working out with a trainer, eating healthfully but not to the point where I’ve gone over to the other side — vegetarian (not that I have anything against that). And I am not giving up on a good steak. I plan to enjoy a mineral-rich bone-in ribeye right up until the time that I can’t chew anymore. And should chewing become a problem, I will move directly into a classic risotto Milanese or spaghetti carbonara. Not at the same time, you know, because the rule against serving two starches at the same meal still applies.
Recently a good friend asked if I had a bucket list. “I never even thought about it,” I answered. Not being smug about it, but I really don’t know how much of a list I could put together.
No. Good luck.
Present cancer excepted, I have had a whole lot of good luck. I have managed to throw together a veritable minestrone of good times.
I sat on the sand on the beach at Malibu and watched the sunset of all sunsets.
I didn’t break the bank at Monte Carlo, but I did okay playing blackjack at the casino there.
I enjoyed the show at Le Moulin Rouge in Paris.
I taught Oprah how to toss pizza dough on her morning show when she was starting out in Baltimore.
I got to hear Sinatra sing on a stage in Chicago. I got to watch Elton John play piano and sing onstage.
I ate risotto Milanese in Milan (a few times). I ate roasted chicken at Chez l’Ami Louis in Paris. I ate breakfast on the side patio at Alain Chapelle’s place in Mionnay, France. Great cafe au lait and croissant.
I stood on the edge of the Grand Canyon and marveled at the magnificence of Mother Nature, the dame who dug this massive hole in the ground.
I managed to come in at just eight over par at the tough Blackwolf Golf Course in Kohler, Wis. I wanted to play the links course last year, but that would have been pushing it.
I got to go out with dogs and hunt for white truffles in the hills outside Alba in the Piedmont region of Italy. And the truffles we foraged were used on a few dishes at lunch later that day.
I learned, when I was only 19 years old, the right way to cook couscous from a vagabond chef called Remy (yes, Remy) in the kitchen of a restaurant in Morocco (when it was French Morocco).
I cooked in the same kitchen with Jacques Pepin, Giuliano Bugialli, Diana Kennedy and Madeleine Kamman. An experience that led me to author five cookbooks and teach Italian cooking.
I shared a glass or two of cool lemonade in a field outside Savannah, Georgia, where a carnival was being set up, with a young guy called Elvis who wanted to be a singer.
Bad luck? I hardly think so.
There were quite a few times during my four years in the Air Force when I could have bought the farm. But I didn’t. I am still here, and I plan to defy the statistics: Two years? I am about to finish two years since the tumor was taken out, and I am still working, still doing most everything I always did. And I have more things to do. So bug off, Big C.
Bruno, author of five cookbooks, was the freelance restaurant critic for the Chicago Sun-Times for 27 years.