A two-year survivor? Of what, exactly? And since when, exactly?

Posted in Uncategorized by Sean Holton on July 24, 2011

July 2011 with my new wheels

Today is the second anniversary of the day I was diagnosed with a malignant brain tumor. (July 24, 2009). The fact that I am still around to talk about it makes me a “two-year cancer survivor,“ in the parlance of my fellow patients and much of the rest of society. People have been asking me if I plan to celebrate and how. I will do something in my own way – like enjoy more rest today and  maybe make an extra special dinner tonight – like a slow-cooked pork shoulder roast with lots of veggies. I’ll also savor my usual glass of Jameson Irish for Happy Hour. In other words, today I will celebrate life much like I do every other day when I consider it a blessing just to be alive. The random nature of this particular day being the a two-year anniversary of my diagnosis doesn’t really make it that much more special than any other day. Last year, on the one-year anniversary, I used the day simply to review my medical records from that day in 2009 when I collapsed and went to the hospital by ambulance from the YMCA.

First anniversary rode my Scrambler back to the YMCA (7/24/10)

reflect and retrace and reconstruct my traumatic experience hour-by-hour

, minute-by-minute, allowed me to savor the pure normalcy and pleasures of a regular day of life exactly one year later.

 But if I am now to be termed and to think of myself as a “two-year survivor,” the journalist inside me  has two pretty basic questions that I need to have answered first:

Question No. 1 What exactly is it that I have “survived?”

Question No. 2: “At what precise moment in time did I actually begin to survive?”

In answer to the first, I am compelled to say that I don’t think I have survived cancer yet, because to me that implies that I have completely beaten back the disease and have been declared “cancer free.” That has not happened in my case and doctors assure me it rarely, if ever can be expected in the case of aglioblastoma multiforme
 brain tumor such as mine. Upon diagnosis, a man my age and in my condition could have reasonably expected to live 11 to 17 months (median survival time from the time of diagnosis.), have a 70 percent chance of living out another year and have a 20 percent chance of living two more years beyond that. So clearly I’m in the zone of good fortune, statistically speaking.  Several of my dear friends and fellow patients are true cancer survivors in that strictest sense of actually whipping cancer itself, in forms as fearsome as breast cancer, non-Hodgkins lymphoma, small-cell lung cancer and breast cancer, esophageal cancer, ovarian cancer, carcinoma, colon cancer, kidney and pancreatic cancer. I don’t yet feel I have earned the stripes to count myself in their ranks even as I continue to draw hope and strength from their stories on almost a daily basis.

These are the true cancer warriors I look up to even as I accumulate experiences and smaller victories of my own along the GBM trail.

What I have most definitely survived, at this point, are two tough years of cancer treatment. That time and the complications from and recurrences of my tumor have led me through three brain surgeries and hospital stays, two courses of intensive radiation totaling 47 treatments, at least a half-dozen chemotherapy regimes involving pills as well as muchintravenous infusions of harsher drugs. I have also survived a profound upheaval that has forced me to re-order my daily life around my condition and all the attendant doctors’ visits, diagnostic tests, laboratory visits, prescription-drug and side-effects management, health-insurance hassles and accommodations to new financial realities such as not being able to work, and  my newly compromised level of mobility and independence. So there. I have survived all of that and am still doing well and staying happy and maybe even encouraging  some other people to believe  that we each as human beings do indeed have the power within  us to weather even this category of personal shitstorm, or categories much worse in kind or degree. Survival is all about adapting to changing conditions and evolving thusly. Like Charles Darwin says, we’ve all got the instinct inside of us or we and our species wouldn’t even have made it this far And I’ll give myself and fellow patients  and survivors some credit for that, too, today as I raise my chilled glass tonight.

Now on to Question No.2: At what discrete, moment in time did I actually begin to “survive”? Was it when I unwittingly sailed right through  the invisible, unimaginable instant, perhaps many, many years ago, when something awful happened in the DNA of that first abnormal glial  cell in my brain to make it go rogue and then begin to multiply along with other fast-dividing cells and eventually percolate into a growing tumor?  If that is the case, then maybe I have really been living with (and surviving) brain cancer for a decade or more. Maybe lots of people like that are out there right now surviving cancer without even knowing they have it. We will never know the answer to that mystery.

Or did my good luck at the Big Casino of natural-selection begin  in the flash of good sense and instincts wo years ago today when I decided to suspend my routine workout on a stationary bike because I was pushing myself too hard? When I collapsed first in a chair and then to the floor, resulting in an ambulance being called?  Was that the crucial, Darwinian moment of adaptation – of change in my routine behavior in the face of a perceived threat? – that saved my life?

Did my “survivor clock” start ticking when I admitted to myself that I was more than just tired? When I stopped resisting the Rural Metro ambulance crew’s efforts to buckle me into a stretcher, inject me with anti-seizure drugs and load me up for a trip to the ER? When I (given a choice between two equidistant local hospitals by the EMTs) happened to choose to be taken to the one attached to the world class cancer-treatment center where I’m still a patient and doing very well today? (Even though at the time, lying in that ambulance, I wasn’t yet even thinking about cancer,let alone cancer treatment.) Did that snap decision save me, Charles Darwin?”?

Maybe it did.  But I think the more natural point for me to start dating myself as a survivor came the next day – it was a Saturday – when I signed those consent forms authorizing a neurosurgeon I’d never met before to cut open my skull and remove the malignant mass that MRI scans had picked up in my brain’s right temporal lobe. Getting through brain surgery successfully that Sunday morning (7/26/09)and being back at home in my own bed just four nights later is still something worth celebrating today. Undetected and left unchecked, that tumor would have kept on growing and easily killed me in just a few weeks. Or have been declared inoperable upon diagnosis, as in the cases of many GBM patients.

Still, even now as I look back over these past two years, I am most fascinated by all of those moments early on that might have changed the whole picture for me today had they gone differently. They were not the first salvos in some “heroic battle with cancer” like you read about in the obituaries all the time. I continue to be inspired by such survivors and they deserve to ne memorialized by poets in their death notices But my main, battlefield triumphs as a cancer-survivor have been more about the nails someone remembered to put in thehorseshoes on the night before the Battle of Agincourt than the longbows they put in the hands of the archers. And going forward I will continue to focus my mental energy on small victories, because I am learning they are the most important. I told my sister, Kathleen, just last week that deciding to take a long nap in the middle of a Wednesday afternoon somehow didn’t make me feel like much like someone in the midst of the epic battle I think I’m supposed to be visualizing now as part of my self-concept as a warrior- survivor. But Kathleen assured me otherwise, reminding me that naps are just as important as doctors’ visits, pills and good meals. So be it, then. I will remain determined to take more long,heroic naps, if that’s what it takes to survive. Maybe  my obituary can even say “On July 24, 2011, Sean Holtonage 51, of Orlando, tooke  a very nice, long and interesting nap two years into a long adventure with brain cancer. By the time he awakened, Sean had realized the most important tlesson he had learned during those two years was how to get over himself. So on that very day, he  became a true survivor, not only of  cancer, but a survivor of himself.

And  that was a story he thought was worth celebrating on every July 24 thereafter, for many blessed years to come.


Latest Brain Tumor advisory: Slightly less Grizzly

Posted in Uncategorized by Sean Holton on July 12, 2011

Dr. Bobustuc

Today I got to see the results from my Monday (7/11/2011) MRI scan . The report I received from my neuro-oncologistbwas better than anything I would have allowed myself to hope for going in. My worst fear was that the neurological decline and increasing left-side weakness have experienced since my last scan in May (see


.) could only mean that the GBM tumor mass on the right side of my brain had swollen up like some malignant, leaky, water balloon. Instead, Dr. George Bobustuc gave me the good news right away: “I think this is definitely better.” The new scan showed significant improvement since May,  meaning that the course of 17 radiation treatments I completed in June had the desired effect of beating back the disease inside my head and, perhaps, giving me more time to stay alive and actually enoy it. “The mass effect (of the tumor) is almost gone.” The only caveat in the report was the appearance of a new growth nodule at the edge of the tumor zone, which will give us something to keep a close eye on when I get my next scan in six weeks.

All in all, I’melated, if not “cured.” Doctors treating glioblastoma multiforme brain-cancer patients such as me don’t keep “Mission Accomplished” banners stored in their clinics because they know such a banner, realistically, cannot ever be unfurled and hung on the wall. In my two-year battle with GBM, I’ve learned to respect the disease enough to know not to put too much weight on any single scan. I’ve had scans indicating everything from zero disease progression to “you may have just a few weeks left to live (such as was the case with my May scan.)GBM can sometimes seem as exhausting and frightening as having a relentless Grizzly Bear on my tail as I run and search frantically for the best route out of the dark woods. Pinning one’s hopes on one good MRI scan is about as comforting (and also futile) as climbing a tree thinking you may have escaped, until the instant you remember, Oh , yeah, bears can climb trees, too.” I’ve already taken the well-worn treatment paths ofhospitalization with major brain surgery (three craniotomies), radiation (two courses totaling 47 treatments and many, many combinations of chemotherapy in both intravenous and pill form.  Sometimes the bear slows down a bit or seems to get distracted when it’s hit by the most powerful medicine, while at other times it seems to just rear up on its hind legs and swat away the latest batch of new-and unproven-chemo pills like so many rubber bullets. Then I just turn around and start running again as the bear crashes through the timber and underbrush behind me, always making some fearsome roar that comes out sounding like the words:”Next scan!” “Next scan!” T least that’s how the roar always seems to echo in my head whenever I wake up and lie there awake and thinking in the dark woods of 4 a.m.

"Cancer metaphor, my ass. I'm a a goddamn GRIZZLY BEAR, you idiot!!

After today’s report, I feel like I’m still running but  I don’t feel  at all like I’m close to being  out of room or about to climb a tree. I’ll just set abouttaking my newly prescribed chemo medications,go on managing my condition and neurological symptoms as I have been and just keep waiting forthe next scan. Just like the bear says.