On behalf of my family, thank you for your love and support during this very difficult time. Your energy and prayers gave us the strength we needed to walk through this wrenching journey with our brother. Many people have asked to view the tribute I created for Sean which was shown at his Memorial Service on December 10th, 2011 in Orlando, so I am posting it here for now. May we all find peace . . .
The Orlando Sentinel
November 29, 2011
Sean Holton, who inspired a large following with his two-year struggle with brain cancer, died this morning at his home in Orlando. He turned 52 on Oct. 29.
Holton, who worked as a reporter and editor at the Orlando Sentinel from 1987 to 2007, wrote a blog about his disease, its treatment and his life that spoke eloquently to those who also suffered from the disease. Oncologists at M.D. Anderson Cancer Center Orlando, where Holton went for treatment and surgeries, referred other patients to his blog called same time tomorrow.
With his characteristic humor, Holton subtitled his blog: “How Sean Holton Learned To Stop Worrying And Just Have Brain Cancer Instead.”
“Thousands of people were following him,” said Ann Hellmuth, a Sentinel colleague who first met Holton when they both worked for the Kansas City Star in the mid-1980s. “He was always such an original thinker, even as a young reporter.”
Born in Kansas City, Mo., Holton graduated with a bachelor’s degree in English and political science from Rockhurst University. After receiving a master’s in journalism from Northwestern University, he started his career in newspapers at the Kansas City Star in 1983. At the Sentinel, Holton was a city desk reporter; investigative reporter; national correspondent; Washington, D.C., bureau chief; associate managing editor for investigations and special projects, and AME for local news.
He conceived and edited a nationally recognized, year-long series on Florida’s water crisis. He oversaw the team of reporters who worked on the Sentinel’s prize-winning series on the ballot recount following the disputed 2000 presidential election. He coordinated the paper’s coverage of the Columbia space shuttle disaster in 2003 and the four devastating hurricanes in 2004.
Holton approached his death much as he lived his life — with intelligence, curiosity, a writer’s eye for detail, and humor.
“He really did live life to the fullest,” said his brother Brian Holton, 53, of Philadelphia. “I think he went out without any regrets.”
Another Sentinel colleague Alex Beasley said Holton approached his disease with the same persistence and determination with which he reported a story: “He never quit, he never gave up. He never would get discouraged. It was the same thing that made him such a fabulous journalist.”
“I said, ‘What happened?’ He said, ‘My seat broke.’ I said, ‘Well, you can’t ride a bike without a seat.’ He said, ‘The hell I can’t.’ He rode standing up the whole time.”
Hellmuth said Holton brought to journalism an insight and intellect that ignored the obvious and found the most revealing detail, the most interesting angle. Assigned to follow the Pope during a visit to Florida, Holton — a Catholic — wrote a story about how far does a Pope’s blessing travel: the first row, to the back of the arena, outside the arena?
“He had that incredible eye for detail and a wonderful approach to a story,” Hellmuth said.
Another former Sentinel co-worker Mike Griffin described Holton’s unique ability to see a story from all angles and perspectives.
“Some people can see the big picture. Sean could see the forest, the trees, the leaves, the squirrels and make sense of it all. That was his gift,” Griffin said.
In his time as the Sentinel’s Washington correspondent, Holton wrote the stories everybody else ignored. On the day President George H.W. Bush was to give a State of the Union speech, Holton wrote about D.C.’s two 1600 Pennsylvania Avenues: one the White House, the other a neighborhood of crack houses and poverty.
“His skill set was incredible research with poetic writing,” said Craig Crawford, who worked with Holton in the paper’s Washington bureau. “He could take a cute idea and turn it into a social essay on the times.”
Sean Holton died wearing a Kansas City Royals T-shirt from his hometown. He was a long-suffering fan of the Royals and Kansas City Chiefs. He left Missouri, but never gave up his love for a big slab of beef.
Holton was a large guy with a big head, which earned him the nickname Bucket Head. He considered it a term of endearment and sometimes referred to himself as simply “Bucket.”
Of all his achievements as a newspaperman, Holton’s proudest moment might have been the book he created from letters he found in an attic suitcase after his parents’ deaths. The letters chronicled their love affair while they were separated by World War II. Holton compiled the letters, adding historical perspective with the events that took place at the time of each letter.
He made enough copies to share with his brothers and sisters — and resisted all urgings that he find a publisher for his book so that it could reach a wider audience.
“It was such a labor of love from start to finish. It was very personal and he felt very proprietary about it,” said Brian Holton.
Holton celebrated his last birthday with his family and a few friends, Brian said. It was a special day, but every day was a special day since he was first diagnosed with the brain cancer in July 2009. Every day was a gift and he wanted to share that gift with those he loved.
“He knew that things were drawing to a close at that point,” Brian said. “There was no sadness on his part, no self-pity. He was definitely a role model for all of us.”
In one of the last entries on his Same Time Tomorrow blog Holton wrote about being able to foresee his own death.
“I am not afraid. I still refuse to be afraid. That would be a fate much worse than just curling up to die. If there is any single thing anyone has learned from following my journey on this blog for these past two years, it is that. Do not be afraid. Fear is a waste of time, and a waste of life.”
In addition to Brian, Holton is survived by his brother Timothy Holton, of St. Louis; sisters, Kathleen Kaplan, of Las Vegas, and Ellen Holton, of Los Angeles; one nephew and two nieces.
A memorial tribute will be held from 6 p.m. to 8 p.m., Saturday, Dec. 10, at the Baldwin-Fairchild Funeral Home, Ivanhoe Chapel, at 301 N. E. Ivanhoe Blvd., Orlando.
Sean’s Obituary (by Sean Holton)
First, the bad news: I’m still dealing with an extremely aggressive brain tumor that’s eventually going to kill me. And the end is not going to be pretty. There will be continuing degradation in neurological function, leading eventually to diminished quality of life, physical incapacitation and ultimately a fewprecious, final days and hours bedridden and surrounded by murmuring hospice workers administering pain medication and doing whatever else they can to keep me as comfortable as possible until I’m dead.Now, the good news: I’m not dead yet. And I’ll continue to receive treatment aimed at extending my life for as long as possible at a level of quality that I can enjoy.
So…that’s how my MRI scan and follow-up consultation with my doctor went today.It was pretty much a textbook example of why a cancer patient riding the infinitely looping and twisting emotional roller coaster that is a recurrentGBM t must learn never to build mountains of hope that are too high e or dig pits ofdespair that are too deep based simply on the results of any single MRIscan. Because the results of these scans are really all the same:”You’re either going to live or you’re going to die.Rather, you’re going to live AND you’re going to die.We just don’t know which , and we don’t really know when. On the hopeful side, the new scan shows my chemotherapy drugs have continued to reduce the volume of the original tumor mass in the right temporal lobe of my brain, which one doctor once described to me as “pretty useless real estate.”On the bleaker side, the cancerhas now clearly infiltrated and grown into more vital areas of the middle brain and brain stem that so far have been spared from damage or unwanted pressure. Consequently I may begin to see neurological deficits compromisingthe right side of my body much as they have been compromising the left side for many weeks now.Remember my post about Half Ass? He could soon be losing even the sole remaining half of his ass that’s left Dr. George Bobustuc, my neuro oncologist, didn’t pull any punches about what this might mean. “This tumor has the potential to grow explosively, overnight,” he said. “You could fall into a deep sleep and never wake up.”Your caregiver my just come in one morning and find you. That’s some pretty scary shit. One day you’re a relatively happy, fully functioning human being and the next day you’rebasically just a 217-pound sack of potatoeslying between two snoozingJack Russell Terriers in the middle of a king-sized mattress, just waiting for a 140-pound Puerto Rican woman to decide whether to try to pick you up and haul you out of there or just call 9-1-1 and let local taxpayers pworry about it. About this time in my good-news-bad-newsmeeting with Dr. Bobustuc, I was starting to feel like I could have been either Larry or Curleyin one of those classic “Three Stooges” moments where Moe pokes them in the eyes to roust them with the command:”Wake up and go to sleep!”
None of thigrim scenario was put on any specific timetable, of course, because Dr. B. is not the one in charge of exactly when I die or anyone else dies . He has just pledged to keep treating me with chemotherapy as long as my body can endure it and there is no compelling reason to discontinue treatment. An example of a “compelling reason” would be if I could no longer eat, drink or enjoy any other regular activities, or if I already were bedridden.
Idon’t feel anywhere near that juncture just yet, so the entire discussion today seemed very theoretical. But I know Dr. Bobustuc well enough by now, and Itrust his judgment based on his experience in dealing with GBM patients to listen closely when he says how quickly such a declinecould get very non-theoretical. As a practical matter that means thinking about and making arrangements for end-of-life-care, most likely while continuing to live in my own home and soaking every ounce of enjoyment that I can out of every second of every day.Right now I intend to spend as much of that time as possible in the company of people I love. It’s that simple. That’s my bucket list. No jumping out of airplanes, going around the world in a balloon,bungee-jumping into a volcano or anything dramatic like that.
Meanwhile I’ll just keep chugging along day-to-day on chemo pills and Irish whiskey like I am now and wait for my next scan. I’m also trying to remind myself that nothing really changed between Monday and Tuesday. I just have more informstion now. And information is a good thing — it never really kills anyoneSo please, please, please don’t worry about me. I am not afraid. I still refuse to be afraid. That would be a fate much worse than just curling up to die. If there is any single thing anyone has learned fromfollowing my journey on this blog for these past two years, it is that. Do not be afraid. fear is a waste of time, and a waste of life.
I’ll be staying in touch here with future updates on my condition, medically, attitudinally and otherwise.
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.
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.
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 (seeScaring the Neighbors 2: Meet Half Ass
.) 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.
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.
brain-cancer-having alter-egos I wrote about in September 2009
as I was trying to figure out which “look” worked best for me as a cancer patient while out and about in public. I couldn’t decide for myself, so I threw it open for a vote among blog commenters. Many of the women chose
Bad Ass as the best look while other voters thought
Crazy Ass was a better reflection of my true, healthy personality. I ended up committing to neither style and wound up somewhere in between—some sort of hybrid character twice as crazy but only half as bad as I’d like to imagine myself being. Story of my life.
But now the voting is over and I have no choice left in the matter. My growingGBM brain tumor has imposed a new style on me, whether I like it or not. And in the process, my little domestic cast of characters has grown by one. So Bad Ass and Crazy Ass have a brand new roommate. His name is Half Ass.
That’s because only one side of his body works the way it’s supposed to.
Half Ass showed up in late April, not long after my neuro-oncologist reported to me that my latest MRI scan showed the brain tumor was
Spreading and growing from its original location in my right temporal lobe. As it infiltrated and putpressure on other areas of my brain, Dr. Bobustuc warned, I might start to notice neurological deficits, particularly on my left side, because the functionality and motor response on the compromised left side of my body is dictated by thenow-diseased, right side of my brain (much as in the case of the United States Congress).
Within just a couple of days of Dr. Bobustuc’s warning, I began noticing small changes.
I realized as I moved around my house that I was starting to bump my left shin on the coffee tables and chairs and sometimes slam my left shoulder against door jambs. It occurred to me that these little collisions were not the result of me dragging my left leg or walking any differently. I realized I was bumping into stuff on my left side simply because I could not see it. My doctors soon confirmed in quick clinical tests and later a comprehensive eye exam that I have experienced almost complete loss of sight in my left, peripheral visual field. This is all because of the tumor encroaching into specific areas of my visual cortex.This degradation so far affects only the left peripheral vision in both eyes. The right peripheral vision in both eyes is fine, as is the rest of my eyesight. That’s good news, because it means that I’m not going batshit blind just yet. I can work around the problem with adjustments as minimal as turning my head more to the left when I walk. I also test myself frequently to check for any signs of improvement or further degradation.Some days I feel like Colin ,
, “The Forger” character played by Donald Pleasence in the movie “The Great Escape” When he realized he was slowly going blind, Colin understood that he would become worthless as a forger and soon be cut ftom the escape plan by his fellow POWs. So he began devising little, well-rehearsed tests to prove to himself and his fellows that he could still see well enough to do his job. In one scene, Colin placed a tiny pin on the floor across the bunk room and counted out the exact number of steps he’d need to take before bending over carefullyto pick up the pin just to show his roommate “The Scrounger “ (played by James Garner) how great his eyesight still was. Of course, Garner screwed up the little self-exam when he stuck out his leg to deliberately trip Colin. I always hated that scene in the movie – and were it not for his ultimate loyalty to Colin (not to mention his later work in “The Rockford Files,”) I would never have forgiven James Garner for his cruelty.
So…adjusting to the left peripheral vision loss the first big concession to my new doppelganger, Half Ass. The next was discovering that I could no longer position my.left hand correctly to type on my computer keyboard. This function would fall under the heading of “fine motor skills” and I’ve learned from the docs that it’s another one of the first things a brain under pressure will throw overboard
to keep the human body’s little neurological lifeboat from sinking. Other fine motor skills, I have learned, are required for buttoning a shirt collar, opening a pill bottle or turning the page of a newspaper. But losing my left hand on the keyboard is a major hit. If I can’t type or write, I lose part of who I am, both practically and spiritually. When even the most routine e-mails must be executed with laborious, right-hand-only, hunt-and –peck proficiency, writing becomes an exhausting chore. And a long blog post such as is an order of magnitude more laborious than hunt and peck–it’s like a never-ending Mutual of Omaha”Wild Kingdom” safari with Marlin Perkins. (Marlin to camera: “I’ll just get the tent set up over here by the nice, large and level spacebar area while my sidekick, Jim, pins the small-but-deadly A,S,Dand F Mamba Viper Keys to the ground with his lame, left hand and then disables the dreaded, Caps Lock Crocodile, using only his right hand.)
I’d like to be able to that say the moment I learned that I physically could no longer write as freely as I pleased was
some melodramatic scene like the one in The Eddy Duchin Story when Tyrone Power, seated at the piano in the lead role, clutches his leukemia-stricken hands with the knowledge that he can no longer play The Chopin Nocturne in E Flat Major
. But Eddy Duchin I’m not, and Chopin this blog most certainly is not, so I won’t take you there. I’ll just get back to playing Chopsticks and finish telling the story of Half Ass.
The next stage of my descent into Half-Assdom was ever-worsening weakness in my left side to the point that I could no longer stand in a stooped position for very long without losing my balance and falling. Exactly that is what happened to me while cleaning up dinner dishesafter watching 60 Minutes on the momentous night of Sunday, May 1. Just about the same time that Navy Seal Team 6 was raiding Osama Bin Laden’s not-so-secret hideout in Pakistan to take him out, my left leg gave out on me while loading the dishwasher and I soon found myself spinning in a circle and then hitting the floor, nicking my cheek on the dishwasher door on the way down. I just picked myself up, wiped up the blood and went off to bed, not even realizing I had missed the big Bin Laden story until I picked up my newspaper the next morning. (Thanks to the awesome performance of my old pals on the Orlando Sentinel Sunday nightside breaking news and production desk, who ripped up and remade a stunning front page right on deadline and got the extremely late-breaking story into the next morning’s paper. I think it must have hit my driveway before bin Laden hit the
Arabian Sea floor at Full Fathom Five. (… Of his bones are coral made, and those are pearls that were his eyes…)
My doctors were very concerned when I reported all these newfound deficiencies one day at the hospital while getting some routine lab work done. One of the neurological nurses on my treatment team was alarmedwhen she noticed a pronounced droop on the left side of my face. The nurses were so worried that they rushed up a previously scheduled MRI from the following week to that very afternoon, just to check inside my head and make sure I wasn’t having a stroke or cerebral hemorrhage. I got the good news from the scan when the nurse called me at home that evening: No stroke. No bleeding. So at least I wouldn’t have to rush into the ER. But the bad news was my tumor had grown still more since that bad April scan, and I would need to come in soon to go over the images in detail with Dr. Bobustuc. He told me on May 18 that the tumor was not only growing, but was doing so at a rate that meant “the disease “could take its course in a matter of weeks, if not d ays, (YES,DAYS!!!!) were I to choose to stop treatment right now.” That was quite a gut punch from Dr. B, because while I’ve always taken the grim prognosis and scary life-expectancy numbers of recurrent GBM cancer extremely seriously, I’d never heard with such specificity that I might be on such a short fuse.Now I was suddenly worried I might not be alive long enough to see the next edition of 60 Minutes that coming Sunday. I mean,what if Seal Team 6 had somehow in the meantime figured out how to to wake up bin Laden, swim him all the way back to Gitmo, clone him endlessly and then re-kill him on live television each and every Sunday night in strict accordance with Islamic tradition, right before The Amazing Race? Would I be missing all THAT, too–just because of this stupid brain cancer?
But I told Dr. Bobustuc that the whole premise of his report was moot, anyway, because there is no way at this point I would even consider discontinuing my treatment, let alone make that decision. I said I’d rather discuss ramping the treatment back up again and getting even more aggressive with both chemotherapy and a second course of radiation, which is what Dr. Bobustuc was recommending. So that’s how I ended up starting radiation again on June 1 for a course of 17 treatments planned out by my radiation oncologist, Dr. Naren Ramakrishna. Dr. Ram lined me up with a new, super-high-tech radiation system called Tomotherapy,. the system excels in treating tumors of all sizes and all kinds of odd shapes, which is perfect for me because my brain tumor is now a dissipated area of disease infiltrating a wide area of my brain rather than being a dense, focal mass in a single small area that can be easily targeted . Tomotherapy has the ability to treat the entire volume of the tumor – simultaneously focusing most of the deadly radiation energy on the cancer cells while sparing the surrounding healthy tissue from damage. Once again, I find myself a very lucky patient even to have this cutting-edge therapy available to me at theM. D. AndersonCancer Center just eight blocks from my home. Most patients would probablyhave to travel out of state or certainly make long commutesacross town every day just to have accessto a hospital with such equipment. I started radiation June 1 andwent to get my head nuked every weekday until my last day of treatment onFriday,June 24. It can take up to eight weeks for the effects of the radiation to become visible , so my doctors have scheduled MRI scans in July and August to assess my response to the treatment . after that , I will get an updated prognosis along with a new treatment plan that is likely to involve more chemotherapy.
in the meantime,I will continueto make adjustmentsto learn to live with my new buddy,Half Ass.
He gets along okay with Bad Ass and Crazy Ass ,too, except when he does something stupid like drop and break one of Crazy Ass’ last beer bottles on the garage floor or, even worse, mops up the mess with one of Bad Ass’ Harley-Davidson T-shirts – especially if it’s the solo-rider one that has the words THE BITCH FELL OFF!! stenciled on the back . Bad Ass got really mad and threatened to beat up Half Ass when that happened just last week. But it’s not all just hijinks and joy around here for Half Ass, either. The diminished strength on my left side has made it progressively harder to walk , so the biggest change has been learning to use a four-pronged cane to get around the house and a small, transporter wheelchair pushed by a caregiver for going longer distances. I don’t drive a car anymore, and have learned to use one of those motor-scooter carts for grocery shopping (learning valuable lessons along the way about how cutting the annoyed looks from able-bdied shoppers can be when you get in their way I’ve had a couple of nasty falls , including one after losing my balance while I was working over hot cooking surface . That was a pretty scary wake-up call. Luckily, I was able to spin away from the grill and land on my butt rather than do a face plant right into the pork chops , so I was not hurt . I have not been injured at all as a result of any fall.. Still, I have to take the risk of injury very seriously as long as I’m living with this condition. But no worries — I am determinedto make whatever adjustments are needed to enjoy as good a quality of life as I can manage while preserving as much as I canof the independenceI’m used to.Most significantly,I have made arrangementswith an at- home health care service to supplement the incredible support I’m already gettingFrom my siblings and friends in Orlando as well as those who visit from out of town to help take care of me.
n the end,
I think I’ll be able to get along just fine with Half Ass. Despite all his faults and physical limitations, he’s not such a bad guy. He goes to bed and wakes up on time, takes all his medications according to schedule and has not yet missed any doctors’ appointments. He made it through every one of those 17 radiation treatments without complaining a bit. Half Ass knows what we are up against and like me is ready to get better no matter what it takes. I hope I can teach him to type better or maybe even play that Nocturne in E Flat on the piano some day. But I have to be realistic and try not to push the poor guy too hard. In the meantime, I suppose he and I can just sit here and whistle Chopin to one another.
PRODUCTION NOTE: I realize it has been far too long since my last update here in April and lots of significant news over the past two months has gone unreported. I would like to start using this blog for more regular updates about my condition and progress, and maybe cutting back a bit on nonsense like the adventures of of HalfAss. To take advantage of what I hope will be more frequent updates, I would encourage readers of this blog to subscribe to the RSSsite feed feature that you can find by scrolling down the right-hand side of the screen until you reach the section called The Meta. In doing so, you will automatically be notified any time I post something new here.
Have I mentioned how much I love MRI scans?
I’ve been spoiled my my past several good scans, but my experience Tuesday (4/19/11) will surely cure me of that. The scan, itself, went as smoothly as ever. The path got rocky when I went over the results a few hours later with my oncologist. The bottom line: After being held in check for nine months by my combination chemotherapy drugs Irinotecan and Avastin,my GBM is living up to its fearsome reputation as the most aggressive and hard-to-control form of brain cancer. The scan revealed a growing, white area of tumorous enhancement in my brain that is about 60 percent larger than it appeared on the images just two months ago from my February 22 scan. That means the GBM is starting to spread and visibly infiltrate a wider area of my brain. We’re still not talking about a dense, focal mass the size of a golf ball, tennis ball or some other piece of sports equipment that we always like to use to describe tumors. Rather, we’re still talking aabout what looks on the MRI screen like a large, white, moving cloud of cancer. Instead of being 3.5 centimeters wide and 5.5 centimeters long, the “cloud” is now about 5.5 centimeters wide and 8.5 centimeters long, according to my doctor. This sort of disease progression on the backs of quick-dividing, fast-multiplying, rogue cells is why GBM is so scary, because growing and growing rapidly is what GBM does best. That’s why we call it ‘cancer.’ Even though we associate it with decay and death, what cancer really is exactly the opposite. Cancer is growth, growth that will not be denied, growth gone wild. Cancer is life, life unkillable and out of control, . After living with this diagnosis since July 2009, I can’t even trim my fingernails or shave my beard anymore without thinking about my brain tumor. Long nails and scratchy whiskers are just another reminder of unwanted growth, relentlessly going about their unwelcome business ofcellular division and multiplicationwith a constant eye, as I imagine them, on the same metabolic clock that rules the daily proliferation and spread of cancer cells.
Given this biomedical reality, I can only continue to count myself lucky that I have enjoyed as many “clean scans” as I have in the 21 months since my diagnosis. I’ve had more good scans, in succession, than a GBM patient really has a right or a statistical basis to expect. These types of tumors typically grow and spread at a rate that cripple and kill patient in a matter of months, not years, from diagnosis. Until now, my biggest physical setbacks have come in the form of peripheral issues not directly related to recurrent brain cancer. There was a bad scan in May 2010 that prompted a second surgery to remove a chunk of my right temporal lobe that contained fewer live cancer cells than dead cells killed off by previous treatments. Then there was that horrible scan in October 2010 that showed a dangerous buildup of fluid around my brain that had to be drained in a third surgery followed by a grim week flat on my back in an intensive-care unit. Yet even through all of that, the cancer, itself, has remained mostly under control…until now. Until now, as I’ve often told people, I haven’t really been through the experience of what it’s like to have a brain tumor. I mainly know what it’s like to be treated for a brain tumor. I don’t yet know what it’s like to suffer from degraded motor function, muscular weakness, difficulty walking, slurred speech, frequent seizures and other symptoms that typically result directly from brain tumors and often prompt the discovery and diagnosis of such a tumor. I had one sudden and, for me, unprecedented seizure on an exercise bike at the YMCA – that’s how my tumor was discovered. Since then, all of my bitching and moaning has centered around the secondary effects of each phase of treatment – surgery, followed by radiation followed by then by a number of harsher chemotherapy regimes. Those remedies have affected my day-to-day functionality and quality of life far more than the underlying disease or tumor. Sure, the popular drama always casts the noble patient “battling cancer” and beating it against all odds. But the real story for me so far has not been about the patient battling the cancer so much as it is about the medications battling the cancer and the patient battling the meds.
So now, after Tuesday’s scan, what does the path ahead look like? Right off the bat, my oncologist – Dr. George Bobustuc – announced that it is time to “switch gears” to new medications that will attack the cancer in new ways that it has not yet had time to adapt to or build up resistance. Some of the pills I’ve already had experience with. It also comforts me to know that I will continue to get regular, intravenous infusions of the chemotherapy drug Avastin, which has worked so dramatically well for me in the past. Dr. Bobustuc said he is optimistic that I will respond well to this new combination of chemo pills, given how well I have responded to previous chemotherapy combinations. “I think we will be able to turn this around again,” Dr. Bobustuc said Tuesday. He is also sending me back for a consultation with the radiation oncologist who oversaw my initial radiation treatments back in the late summer of 2009. Usually an aggressive, six-week course of targeted radiation such as the one I went through is aimed at the original tumor cavity and a wide margin of surrounding tissue. My understanding is that when that tissue has been treated once it has essentially been treated forever. But now there is a chance that, with the cancer infiltrating into previously unradiated areas of my brain, we may be able to retarget radiation to those new areas and achieve a desirable result. I will know more on that front after meeting with the radiation doctor next week. My doctors and I will know even more about my new, overall prognosis in about a month, when I get another MRI scan to assess whether the new treatment will work or the cancer will continue to spread and grow.
Have I mentioned how much I love MRI scans? Have I also mentioned how much I hate them?
One of the most memorable rhymes penned by lyricist Ira Gershwin pairs the words “maybe Tuesday” with the phrase “my good news day.” Well there were no maybes attached to this particular Tuesday. For me, it was an unqualified good news day.
For the third consecutive time since early December, an MRI scan of my brain showed no progression of disease. My chemotherapy regimen continues to keep the GBM cancer in check. The combination of the drugs Irinotecan and Avastin is working so well, in fact, that my neuro-oncologist has decided to cut back on the frequency of my chemo infusions — from once every two weeks to once every three weeks. That’s huge news for me. Basically, it will give me lots more time to recover from the debilitating side-effects that wipe me out after each infusion. And while I’m at it, I’ll get time to enjoy each precious day of life ven more than I am now.
“Your scan is good,” said Dr. George Bobustuc. “All in all, it is very, very good.”
My day began when my brother, Brian, drove me to Orlando Regional Medical Center to report for the MRI
scan at 7:30 a.m. The first part of the scan was the straight-up imaging of the brain,, followed by a second series of snapshots taken after I was injected with a contrasting dye to highlight areas of enhancement indicating the presence of tumor cells. For whatever reason, my blood vessels weren’t cooperating with the IV needle at first, and it took the MRI technicians six tries to find a vein that would accept the dye injection. They were mortified that they had to stick me so many times to get it to work. But as I told them, I didn’t mind the pain too much because pain is generally a good indicator that one isn’t dead yet. So as far as I was concerned, my day was already off to a good start.
There was only one caveat in Dr. Bobustuc’s report once he had finished reviewing the results of the brain scan. He said the imagery indicated there had been been a small hemorrhage in the area of my chemo-besieged brain tumor sometime after my previous scan on January 4. That, he said, was an effect of the Avastin part of my chemotherapy. If given in far stronger doses than I’m getting, Avastin can cause severe internal bleeding problems. As much as that particular side effect might piss off the folks at the U.S. Food and Drug Administration, the hemorrhage was so small in my case that Dr. B expects it to heal itself and be absorbed to the point of invisibility by the time I get my next scan in another couple months. In other words, he assured me, don’t be overly concerned about it because it’s a sign the drugs are working exactly as they are supposed to be. And of course, no one ever said killing cancer is supposed to be pretty. And as long as I can expect this treatment regime to keep me alive at least through the end of this year, and perhaps for many more years to come, what’s a little brain hemorrhage between friends?
Dr. Bobustuc said something else that stuck with me long after I left his office. He told me to make it a goal to not even think about my brain tumor for two full days out of each week. I really like that prescription. It means I’m making progress. Maybe, if I keep it up, I could take that advice even further – and eventually someday will come along when I’ll have whittled my “thinking-about-my-brain-tumor-time” to just one day each week.
Maybe I will make it Tuesdays.
I promised that I’d keep everyone posted on the fate of those 1,000 origami cranes I received last November from an extremely caring and generous group of strangers in Palm Beach County. In case you don’t remember, they heard about my situation via this blog and just decided they wanted to do something to help me get better. So they got together and folded 1,000 origami cranes for me — in accordance with a Japanese legend that says such a gesture will help sick people heal. Such a collection of cranes is known as a Senbazuru. Part of the tradition goes back to a group of Japanese schoolchildren who made a Senbazuru for a young girl who contracted leukemia after surviving the 1945 atomic bomb attack on Hiroshima. For more background, read this blog entry.
Well, I knew I couldn’t keep such a wonderful thing all to myself. I wanted to share it somehow with my fellow patients at MD Anderson Cancer Center here in Orlando, in order to pay the gift forward and maybe help them heal, too. My first idea was to ask a well-known Orlando artist to create a giant mobile sculpture so that all 1,000 cranes could hang together in the atrium of the hospital’s main lobby. But that idea for the cranes didn’t fly, because the hospital had fire-safety concerns.
My next idea was to pass the cranes along, one-by-one, in envelopes addressed to other patients, along with a personal letter from me explaining where they came from and what they meant. The hospital approved that plan, so I got busy writing the letter, getting 1,000 copies made and getting 1,000 envelopes printed up at Sir Speedy Printing. The video slideshow here explains what happened after that, when a group of my friends got together Feb. 5 at my house in Orlando to do the work of enclosing a single origami crane in each envelope. Thus was the circle completed: Strangers helping me heal, and then my friends helping me help other strangers heal. (Click Play button on image below to view slideshow).
I delivered all the envelopes to the hospital last Wednesday, and by the time I went for my chemotherapy infusion on Thursday they were already set out in trays on various patient check-in counters. I was also told that many of the medical oncologists at M.D. Anderson asked for envelopes in order to hand them out personally to their patients. I love the way this all turned out. I hope you do, too.
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.
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.
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.]