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.]


9 Responses

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  1. Kathryn Quigley said, on January 31, 2011 at 1:31 pm

    I like the outfits of your French cancer-fighting medicine-soldiers. Maybe you should start dressing like that, too, when you get your infusions.
    The whole analogy is great though and very detailed.

  2. Colorado Bob said, on January 31, 2011 at 3:13 pm

    This sounds like shopping for flood insurance in Australia, very tall premiums, and huge deductables.

  3. Elaine said, on January 31, 2011 at 3:46 pm

    One question: Are we supposed to picture you in those red pants?

    No, nevermind. don’t tell me.

    Just keep staying well.

  4. Justus said, on January 31, 2011 at 5:55 pm

    Great you are doing well. I did not know that France ever had soldiers but who carried the white flags?

  5. tonyb39 said, on January 31, 2011 at 10:10 pm

    Hey Shawn,
    Thanks for sharing! Your one tough dude. Damn, your wonderful… Again, if you need anything I’m not very far away and i would love to meet you anyways…Tony

  6. ellenpholton said, on February 1, 2011 at 11:29 am

    i love you Frenchie, I mean Seanie xoxo

  7. April said, on February 1, 2011 at 3:57 pm

    I’m with Justus … who knew that French had armies?

  8. Jane said, on February 2, 2011 at 9:44 am

    Great news! And I love the analogy….I’m with Kathryn, I think you should dress up as a French soldier for your next infusion!

  9. rebeany said, on February 5, 2011 at 11:57 pm

    ooh la la….i agree. a better fight than one where you’re swinging at shadows. keep going….i hope the collateral damage is minimal. – i was allowed to take L-glutamine powder (pharmaceutical grade mixed into some juice) when i was in chemo to help battle the neuropathy and if that’s an issue, ask them if it’s allowed.
    keeping you in my best thoughts.

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