World War I Inside My Head

Posted in Uncategorized by Sean Holton on January 31, 2011

 What I once described as The War On Terror Inside My Head is officially over. Now I’ve settled into a whole new way to think about my ongoing treatment for brain cancer. I’ve turned back the calendar nearly a century to another war: The so-called “War To End All Wars,” otherwise known as World War I. And I’m already starting to think that tragic folly makes more sense as a cancer-fighting model than today’s seemingly endless, global war.

On Thursday I had my 5th intravenous chemotherapy infusion since resuming my bi-weekly treatments in early December, after a two-month hiatus for surgery. Last week’s session in the IV chair also marked the 11th infusion overall since I went onto this new treatment regime in early August. Based on all the encouraging MRI  scans I’ve had during that time, my brain tumor seems to be responding very well – either by not growing or actually showing signs of shrinking or even going away when viewed from some angles in some scans. So the cancer appears to be highly sensitive to the powerful combination I’m getting of the chemotherapy agents Irinotecan and Avastin.

The Irinotecan part of the infusion takes about 90 minutes. The job of that drug is to seek out and kill the rapidly-dividing and crazily-multiplying GBM brain-cancer cells by destroying their DNA directly. The Avastin takes only 10 minutes per infusion, and its job is to prevent the formation of new blood vessels around the embattled tumor in order to cut off its blood supply and keep it from growing. In so doing, Avastin also helps Irinotecan break through the single most formidable factor making brain tumors so hard to treat. That’s the defensive shield called the Blood-brain barrier, which nature designed to keep toxins in our bloodstreams from contaminating our brains. But because it protects rogue cancer cells along with normal brain tissue, the blood-brain barrier makes brain tumors such as mine incredibly resistant to standard chemotherapy alone.

Yet as with most every kind of chemotherapy, this cancer-killing one-two punch of Irinotecan and Avastin results in lots of friendly-fire casualties, too. Destruction of other important parts of our DNA leads to well-known chemo side effects such as hair loss, nausea, crumbly fingernails, kidney damage, fatigue, weakened immune systems and the like. When powerful “systemic” drugs such as chemotherapy course through your bloodstream and turn your entire body into a chemical-war zone, these unintended targets become the collateral damage.

Thus far, my collateral damage consists of wooziness, stomach upset and moderate to severe fatigue for several days after each infusion. It could be much worse, based on my experience talking with other cancer warriors who are on chemo drugs much harsher than mine. Other chemo agents have names such as “Arsenic Trioxide,” “Cisplatin,” or “Herceptin.” And lots of cancer patients sit in the chemo chair for six hours or more, on consecutive days, for several weeks until their prescribed course of treatment is finished. I don’t know how those folks handle all that. They are my heroes.

For me, the current phase of my cancer war means I  just make sure I’m stocked up on everything I need in advance of each infusion date, and that I’m careful managing my time and energy throughout the entire 14-day cycle to make sure I take care of everything that needs to get done – like shopping, paying bills, keeping up with family and friends, making meals, feeding and petting dogs, doing minor household chores and all the other things involved in remaining independent with a reasonably good quality of life.

As I thought Thursday about how used I’ve grown to this new routine, my mind wandered back to that post I wrote in 2009 that described living with brain cancer as akin to having The War On Terror going on inside my head. At that time, I had been through emergency tumor-removal surgery, six weeks of radiation and had just started a much less challenging chemotherapy regime that simply involved taking an anti-cancer  pill calledTemodar for five consecutive days out of every 28. That’s the standard first line of treatment against GBM cancer, and the side effects were negligible. Temodar held my brain cancer in check for 10 months. All I had to do was keep popping the pills, go for another MRI scan every two months and hope for no signs of tumor recurrence. But as I wrote then, my primary measure of success was not in the realization of something positive (like being declared “cancer free”) but in the avoidance of a negative, such as a recurring tumor. That’s exactly how we’ve been conditioned to live in the age of Terror, where we cling to the notion that we must be safer not because we’ve rooted out the sources of global terrorism, but simply because we Americans have not experienced a second, major attack since 9/11/01. Never mind the paradox that “fighting Terror” seems to require that we live in a constant state of Fear. So who’s winning that war, anyway?

That’s why I’m switching over to the World War I model, because I don’t want to spend the rest of my life sitting around and fretting about a catastrophe that may never happen (a bigger, nastier and this time untreatable tumor). So my new focus is on what is actually happening, what I can see right there on the MRI scans I’m still getting every couple months. Those scans show wispy, white areas of enhancement indicating where my underlying brain cancer is struggling mightily to form another killer tumor, but so far has not succeeded. If that means I have to live with a bi-weekly chemotherapy routine that is the medical equivalent of trench warfare, then so be it.

Now I’ll just imagine those cancer cells dug in behind their mighty blood-brain barrier as if it were the Hindenburg Line and they were the German GBM Army, circa 1916.


French soldier

Entrenched on the opposite side of the battlefield, are the invisible molecules of  my own little French Irinotecan Army, waiting around in their red pants and Foreign Legion style caps for the bi-weekly whistle of the IV monitor. That sound is their signal to swarm over the top of the trench wall for another direct, frontal attack on the enemy. My little Frenchies will fight and die for ground a millimeter at a time, between long bouts of boredom and thinking (wistfully, in French*) about all the women they’ve left behind in Paris.


British soldiers

 On the northern end of the Allied trenches, meanwhile, are the jaunty molecules of my personal British Avastin Expeditionary Force. They snap off their cheery, can-do salutes from the brims of those old-style combat helmets that look like upside-down metal dinner plates on their heads (“Right-o, lads!”). For now the Brits will go about their critical job of outflanking and attacking the arterial blood-supply lines that sustain the Germans in their trenchworks. Eventually the GBM line may be turned, or even broken and obliterated. Who knows? My oncologist recently told me this stalemate could go on for at least another year, and that as long as we can keep the cancer cells where they are, then we are winning the war. If the GBM forces advance out of their trenches and push our chemo armies back, we can call new drugs into the fight, as if it were 1918 and we had the battle-ready but unproven United States Army waiting in reserve. I can only hope that my health insurance will cover U.S. intervention.

So that’s how I’m visualizing things for the forseeable future. My next look at the battle lines is scheduled for Feb. 22, when I get my next MRI scan. I’ll have at least one more chemo infusion before then. Even though I don’t look forward to the collateral damage, I do like being able to see the enemy and fight hand-to-hand, in mortal combat. I certainly like it much better than living in fear of something invisible.

*[ SAMPLE FRENCH-SOLDIER THOUGHT: “Les courbes et les plis du champ de bataille me tourmenter comme s’ils étaient la chair d’une femme volage. Hélas, on ne peut faire l’amour à la guerre.” ENGLISH TRANSLATION: “The curves and folds of the battleground torment me as if they were the flesh of a fickle woman. Alas, one cannot make love to war.”]

[2/7/2011 QUICK UPDATE: Well, as it turns out my insurance won’t cover “U.S. intervention” in the war, after all. A month ago, my oncologist prescribed a new chemotherapy pill called Nexavar to help reinforce and boost the effects of both the Irinotecan and the Avastin. The drug is proven and has FDA approval for treating kidney cancer, liver cancer and some forms of melanoma. But it’s still in clinical trials for use against GBM, so my insurance company denied coverage for the 28 tablets per month that my prescription calls for (200mg x 2 daily, 7 days on and 7 days off).  My oncologist did not back down, though. He and his team at MD Anderson hooked me up with a program where patients in my situation can bypass pharmacy and insurance issues and get the medicine for free directly from the drug manufacturer (Bayer Healthcare). The bottle of medicine arrived at my home Saturday and I took my first tablet this morning to begin my initial seven-day cycle.]


A very good news day

Posted in Uncategorized by Sean Holton on January 4, 2011

Ann Hellmuth

A typical MRI brain scan in progress

My first newspaper job was as a cub reporter for The Kansas City Star, the afternoon daily serving my hometown. There, I had to roll into work each day by  6:30 a.m., telephone local police agencies for all the overnight news and have all of my stories written and filed before noon so that the paper could be printed in time to hit the driveways of our news-hungry subscribers no later than around 5 p.m. I knew at the time that such a crazy chedule would be hard on my health. Besides the unforgiving deadlines, the sheer excitement and pressure of the job required me to  guzzle two pots of coffee and smoke a pack of cigarettes each morning before racing out for a Double-Whopper With Cheese for lunch. Then, after quitting time, the job description called for we reporters to arrive at some local watering hole  by late afternoon so we’d have plenty of time to slam down pitcher after pitcher of cheap beer before refueling our bodies for the next day with an a lousy, unplanned and non-nutritious dinner of pub food.

I was reminded of those PM-newspaper years today when I headed into the Orlando Regional Medical Center for my regular MRI scan. It was still dark when I got to the hospital just after 7 a.m., and then I had a hectic morning checking in, having my insurance verified, changing into warm, loose-fitting clothes and popping an anti-nausea pill and then being crammed into a small, extremely noisy tube just like the one pictured above. I lay there for two hours for all the scans to be completed. Then I rushed down the hall to my oncologist’s office to get the medical report and updated prognosis before driving home for the daily nap I need to relieve chemotherapy fatigue . Given all that activity, I was worried I wouldn’t have time to file an update for this blog by the end of the day. But I’ll be damned if I didn’t make the time to write this story –even without the assistance of coffee, cigarettes, cheeseburgers or beer. And I only blew deadline by a couple hours.

It’s very good news, and after that windy opening I’ll keep the rest of the story short. The scan showed my brain cancer has not progressed even a tiny bit since my last scan on December 2. If anything, mydoctor told me, the powerful chemo drugs I’m on continue to beat it back. “You should be very happy with these results,” said Dr. George Bobustuc. He told me he’d keep hammering away at the remnants of my tumor with biweekly chemo infusions. He’ll keep checking my progress with more scans about every six weeks. The doctor said we could keep this very effective combination of drugs going for as long as a year, if need be. If the tumor actuallystarts to recede, he may be able to cut back on the frequency of my infusions — which would be great news on the fatigue front. He also reported that there was no sign of a recurring buildup of excess fluid in my brain. That was the issue that plagued me last fall and required an eight-day hospitalization to drain all that extra juice out of my melon.

Yet another thing about today reminded me of my old days at The Star. There by my side, as I soaked up all this good news in the doctor’s office, sat my longtime, dear friend Ann Hellmuth, an ace journalist who was my editor and boss back in those days.We’ve been friends and colleagues for going on 30 years now. Ann moved fromThe Star to The Orlando Sentinel back in the mid-1980s and shortly thereafter talked me into following along. She said it was a great place to work, and she was right. We had a blast working together all those years in journalism. We’re both out of the biz now. But lately, Ann and I have become colleagues of a different sort: Colleagues in cancer treatment. Ann, a cancer survivor in her own right,  is currently helping her husband Justus right now in a grinding but increasingly  successful battle against lung cancer. Though Justus and I have completely different forms of cancer, the three of us compare notes almost daily on symptoms, treatments, side-effects and all the darker, scarier, and more existential shit that all cancer patients must deal with sooner or later. Ann wanted to be with me at my appointment today, and she showed up in the oncology waiting room with a smile on her face and a bag full of fresh breakfast pastries from Panera Bread. It was great having her there not only for the moral support but for her lightning-fast notetaking skills. If I ever need a verbatim transcript of today’s meeting with my doctor, Ann will be able to provide it.

Thanks for being there today, Ann. As usual, you made it all very  fun. I’m sorry I had to do such a rush job on the story, but at least I got the main news in. Of course, I’m still writing long, but this time I  almost made deadline. And I even have an idea for a cute kicker. 

How’s that for progress?