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?
Suppose that you go away for two months, leaving your home unattended and unmaintained. What exactly do you hope or expect to find upon your return? Here are a couple of possibilities:
Scenario One: You return from the airport, open the front door apprehensively, and immediately notice some cobwebs in the corners and a thin coat of dust on the furniture and floor — certainly not something you would have wished for but, at the same time, not entirely unexpected either. And definitely not a crisis.
Scenario Two: You open the front door to discover that vandals have broken in and crapped on your living-room rug. Yes. A very ugly scene indeed.
As a brain-cancer patient, I have been on a long vacation of my own lately. That is, I went without chemotherapy treatments for a stretch lasting from October 12 until just yesterday (December 2). The chemo hiatus was necessary because of the surgery I underwent October 21 to drain a potentially dangerous collection of excess cerebrospinal fluid that had built up around my brain. One of the chemo agents I receive intravenously (Avastin) comes with a bleeding risk that makes it too dangerous to administer until the brain has fully healed from such a surgery.
A bi-weekly therapy combining Avastin with the cancer-killing drug Irinotecan has been extremely successful keeping my tumor in check since August. I was nervous being off the drug treatments for for so long. So I was more apprehensive than usual yesterday when I went in for my first MRI brain scan since October 20. Reviewing the results afterward with my oncologist would be a bit like opening the front door of my brain and wondering what we would find inside after such a long absence. Would it be crap on the carpet or just a little dust on the furniture? Thankfully, for me, it was more like the latter. Still, the so-called “clean scan that every patient with any kind of cancer always hopes for turned out to be too much to expect.
“”The scan looks a little worse. It shows the tumor might be coming back,” said my oncologist, Dr. George Bobustuc, stepping into the exam room.
“Oh no,” I thought. “My worst fears about being off chemo have been confirmed.”
But as Dr. Bobustuc calmly led me through the latest scan in a side-by-side comparison on the screen with my Oct. 20 scan, my fears quickly were diminished. He pointed out where the new MRI had picked up some “areas of enhancement” that showed up as tiny white flecks on the screen around the site of my original tumor. These little flecks looked nothing like the scary image of the full-blown recurrent tumor that I illustrated here with a photo of a comet afterI had a really bad scan on July 30. Now if you take out the comet and look only at the stars in the background of that picture you’ll have a better idea of what my new scan looks like. No turds on that carpet, folks. Just a little dust.
Another blessing I continue to enjoy as a GBM (glioblastoma multiforme cancer) patient is the fact that, while the disease is usually assumed to have infiltrated the entire brain by the time it is diagnosed, there have been no signs of new tumor activity anywhere in my brain beyond the site of the original tumor that was removed in July 2009. And that didn’t change with the latest scan. Less fortunate GBM patients often must deal with a progressive, spreading disease that creates multiple, new tumors popping up in more vital lobes of the brain.
Dr. Bobustuc put me further at ease when he used the term “soapy bubbles” to describe the little white flecks. He said he said he wouldn’t even use the definitive term “recurrent tumor” to describe what the new image showed unless those little dots had been larger, more dense and had popped up during active treatment — while my brain was being bombed with the chemotherapy. That would have been a troubling sign that my brain cancer might be”"learning” to resist the powerful medicine. Instead,the flecks’ appearance during the long treatment hiatus was fairly predictable. They are definitely signals that the underlying GBM cancer is still in there, and maybe just waking up a little until we can start bombing it again.
Speaking of that, I was extremely relieved that shortly after leaving Dr. Bobustuc’s office, I was back upstairs in a chemotherapy infusion room, sitting in an easy chair with an IV in my arm. I will have another infusion in two weeks, and then a third two weeks after that. Then I’m set up to get another MRI scan in early January to check on progress. Based on my history with these two drugs, having seen just two of these infusions wipe out a dense tumor mass back in August, I’m petty confident about what my next scan will show.
In other words, watch out, little soapy bubles. Avastin and Irinotecan are back in town.
If you’re looking for a place to have your faith in basic human kindness and generosity renewed, keep reading. If you’re tired of hearing about all the evil and hatred generated by the Internet and would rather read instead a story about the positive human energy that’s just sitting there, waiting to be unlocked by the breathtaking power of random online connections, stay right here.
I received an incredible gift in the mail just a few days after I returned home from the hospital recently — a stunning gift, made even more incredible because it came from 10 complete strangers. The beauty of this gift almost wiped away the miserable memories of my recent hospital stay.
The present arrived in a large box and was just sitting there on my front porch after being delivered with my daily mail. I rushed the mysterious package inside and immediately tore it open to see what it contained. It was at that moment that I learned a new word: “Senbazuru.”
The word is Japanese, and it describes a collection of 1,000 origami paper cranes that are painstakingly folded by hand. In ancient tradition, the creators of such a gift are granted a single wish — usually involving a desire to speed someone’s healing or recovery from a long illness or injury.
When I read the card that came inside the box, I learned that the effort to create my Senbazuru had been organized and led by Jane Smith, a health and fitness blogger for the Palm Beach Post, and whose name I recognized because she has added comments to some of my posts on this blog. Like me, Jane has had successful surgery to remove a brain tumor. She had learned about my blog from a mutual friend (former Orlando Sentinel staffer Tiffini Theisen), had become a fan and had written me some notes of encouragement last summer as I was going through my second surgery. Here is a post Jane wrote on her own blog last August explaining why she was launching the 1,000 cranes project for me and soliciting readers for help in folding the cranes. Nine other people joined the effort, including Jane’s sisters Colette Palovick and Judy Skinner, her niece, Kathy Palovick, and her friends and co-workers Annette Jones, Tory Malmer, Karen McGonagle, Michelle Quigley, Allison Ross and Susan Spencer-Wendel.
To each of them, I express here my everlasting gratitude for this wonderful act of generosity. I spread these beautiful cranes out on my dining room table today and was amazed by the effort that went into each one. I could not imagine myself folding 10 of them, let alone 100 or 1,000 of them. After receiving the gift, I e-mailed Jane to thank her and tell her how stunned I was to be the recipient of such a thing. She wrote back to tell me how she kept the project secret from me, and answered my questions about why so many people would be willing to devote such time and energy to a stranger living nearly 200 miles away.
“I didn’t post my blog on Facebook or Twitter, as I normally do, to keep you from finding out about the project before you received the cranes,” Jane said. “If I had to explain why they wanted to fold cranes for a stranger, I think they did it simply because I asked. They also wanted to help me with a feel-good project, as a way of passing my good health forward. Annette and Allison had made origami in the past and were eager to help. Allison actually folded 1,000 cranes for her grandfather’s birthday, so she was familiar with the crane legend. Karen is a high school friend that I recently reconnected with on Facebook. Your former co-workers also played a role. Tiffini Theisen, now a web trainer and social media editor at the Post, told me about your blog in the summer of 2009. She said you had a dry sense of humor, which I’ve come to appreciate. Kathryn Quigley, a former Post reporter and now an assistant professor of journalism at Rowan University, recently gave me your snail-mail address.”
My thanks go also to Tiffini and Kathryn for your part connecting me with such a wonderful group of people.
Now I must think of what to do with my Senbazuru. As I wrote in my note to Jane, if the phrase “pay it forward” could ever have more relevance than it does in a situation such as this one, I certainly cannot imagine what that superseding situation might be. So now I am working on a way to pass the healing power of this gift along to all of my fellow patients at the M.D. Anderson Cancer Center here in Orlando. I don’t know exactly how that wish of my own might take form, but I have already been in contact with officials at the hospital and they are enthusiastic about helping me share this gift in that way. I will certainly be excited if I am able to pull off something like that, and I will let everyone know how things turn out.
I have been terrible about keeping this blog updated lately, especially during the past couple weeks of dramatic turns and big developments in my medical situation — including another brain surgery and an eight-day hospital stay, with six of those days immobilized in a bed in an intensive care unit. My apologies to all of you who have checked in hoping to find news about me, only to find nothing. My thanks to all of you who have e-mailed me directly to express concern. I hope this post answers all the questions you have.
On the morning of Wednesday, October 20, I went to Orlando Regional Medical Center for what I thought would be just another routine MRI scan of my brain. I fully expected the news to be as good as the news from my last scan on August 30, because in the interim I had completed four more two-week cycles of the powerful chemotherapy treatments that had already produced such excellent results in the earlier scan.
Though the scan, itself, was in the morning, my appointment to go over the results with my neuro-oncologist would not be until 3 p.m. the same day. My sister Kathleen had flown into town to be with me on this day, and we were hoping for more great news. Little did I know how incredibly lucky I would be to have her by my side for the most difficult, mentally challenging eight days of my life.
The doctor was running a bit late, so we didn’t get into see him in the clinic until 4 p.m. He announced immediately that the scan showed the chemo was still working wonders on the cancer. The disease was showing no signs of progession, and the brain tumor was continuing to disappear. Kathleen and I had about five seconds to savor that good news before the doctor hit us with this: The fluid collection around my brain had continued to worsen, was reaching dangerous levels and I would need to be admitted to the hospital immediately so that the problem could be dealt with directly. Immediately, as in “tonight.” And “dealt with directly” as in “surgery.”
We rushed home to await a call from the hospital telling us exactly what time a bed would be ready for me. I was to report in at 8 p.m. for the night, giving me just three hours to pack an overnight bag, say goodbye to my two dogs and get back to the hospital. I was told to expect a surgery to drain the fluid to be scheduled sometime the next day (Thursday). In my mind, I was thinking the surgery would amount to no more than a “drill- a -hole-insert-a-hose” operation to siphon the excess fluid away. But Thursday morning, when my neurosurgeon came in to brief me, I learned that it would actually be much more complicated. I was headed that afternoon for for my third “craniotomy” — a procedure that involves cutting away a disc of bone from the skull to allow the surgeon complete access to what’s inside. Once inside, the neurosurgeon would clean up the mess and implant an outlet that would allow fluid to continue to drain even after the surgery was over. The surgical consent papers that I signed said the purpose of the operation was not just to remove fluid, but to “evacuate a subdural hematoma” — which typically refers to trapped blood clots or small hemorrhages. The papers said the risks of the operation included “stroke”, “coma” or “death”. I asked the nurse awaiting my signature whether the “coma” package included meals, and she laughed and told me not to be so morbid. So I just signed the damn thing.
The surgery went well. When I woke up, I found myself in a “recovery room” surrounded by dozens of other patients in beds partitioned by curtains. The drainage tube coming out of the back of my head led to a reservoir where the fluid could be collected for later analysis. To keep the drain flowing I was ordered to remain flat on my back and not allowed to tilt my head up even an inch off the pillow to look around or take a sip of water. Try taking a sip of water through a straw while laying flat on your back on the floor with the back of your head touching the floor and you’ll understand a lot about what my next week in intensive care was like. Next, try sipping hot soup from a bowl that way — or chewing and swallowing cubes of cold Jell-O. (Please do not attempt without someone right there to keep you from choking).
The absolute worst part of intensive care was the waiting. Kathleen and I were constantly waiting for word from the docs on what was supposed to happen next. I had naively hoped that I might be released to go home as early as Saturday or Sunday — but there was no way I’d be getting out that soon. The docs wanted to monitor the drainage for several days, and each morning I was awakened at 4 a.m. to be wheeled down for a CT-Scan of my head to give them an update on how things were going. The good news was that the golden-hued cerebral spinal fluid was draining. The bad news was that it kept coming back (all of our bodies naturally produce several milliliters of the stuff each day.) Even worse for me, my fluid had a thicker consistency that sometimes clogged up the drain tube. This discovery unnerved the doctors because it meant they might not have the option of installing a permanent “shunt” which would be a longer tube that would redirect excess fluid from my head all the way down to my abdominal cavity, where it could be absorbed. Saturday, Sunday and Monday all came and went — with us not knowing whether that type of operation, or some other fate, awaited me.
The clock on the wall in my ICU room became my worst enemy. In my restrained position, when I got tired of staring at the same acoustic ceiling tile, the clock dominated my field of vision and was a constant reminder of how tedious these days were. I’d watch the clock’s small hand jackhammer its way through each one-hour interval as if it were a bent, shrimp-cocktail fork chipping its way through successive, one-inch thick slabs of marble or granite. I had only to watch that process 24 times, and it meant I had another day under my belt and was another day closer to going home.
The quality of nursing care I received in ICU was incredible. Some of the wonderful nurses were familiar to me from my previous hospital stays. And having my sister there by my side to help me eat and do hourly breathing exercises was something I will never be able to properly repay her for. Some days Kathleen spent 10-12 hours with me there at the hospital, taking breaks only to run home to eat, sleep or tend to my dogs.
Some nights, the medical strain, uncertainty, unvarying white noise and overall tedium of the situation in ICU came close to pushing me over the edge. On Sunday and Monday nights — in the middle of the night — I awakened from dreams so vivid they left me disoriented about who I was and why I was there. I felt like I was actually losing my mind. One night I called my sister Ellen on the West Coast to help me talk my way back to reality, and another night I called Kathleen so she could assure me that the room I was in was indeed the same room I had been in for four days. Late Monday night, I woke up from a sound sleep while my neurosurgeon was checking on me at the end of his late rounds — at about midnight. But instead of engaging in the actual conversation that was going on in reality, I could not shake myself from the alternate reaility of a dream that the doctor was not talking to me in my ICU room, but instead was addressing the complexities of my case in front of an amphitheater full of medical students arranged around a floodlit stage that was centered upon my bed. My nurses and doctors explained that this degree of disorientation is not unusual for patients spending long stretches in ICU. In fact, there’s even a clinical name for it: “Intensive Care Unit Psychosis.” I Googled it and found this definition: “A disorder in which patients in an intensive care unit (ICU) or a similar hospital setting may experience anxiety, become paranoid, hear voices, see things that are not there, become severely disoriented in time and place, become very agitated, even violent, etc. The condition has been formally defined as “acute brain syndrome involving impaired intellectual functioning which occurs in patients who are being treated within a critical care unit.”
I don’t want to embrace the whole “psychosis” thing, but I guess things could have been much worse for me. I could have been in the coma that I signed up for. Or I could have been in an ICU room in a hospital in Islamabad (pictured at top) instead of in a non-flooded country with the most advanced health-care system in the world.
I don’t know how many more of those weird dreams I could have tolerated. Luckily for me, my ordeal was almost over. On Tuesday, the doctor entered my room to announce his plan was to remove the drain plug from my brain immediately and just keep a close eye on things to see if I might heal naturally as pressure in my head built to a level of equilibrium that would either A) allow no more fluid to collect there B) Force the fluid to return to natural circulation patterns or C) force my brain tissue to shift and fill in the cavity where the harmful fluid had been accumulating.
I was totally on board with that plan, especially because it put an end to my hospital stay in sight and meant I would be moved out of the ICU and up to a regular room on the eighth-floor of the hospital in time to watch Game One of the World Series on Wednesday night.
On the morning of Thursday, October 28 I was discharged from the hospital. Kathleen and my brother, Brian, drove me home and took care of me for most of the next week, along with Dave Noland, my childhood buddy from Kansas City. I am feeling a bit tired and dealing with occasional headaches, but otherwise am resting comfortably at home and doing my best to take care of myself and my noggin while watching plenty of football and Magic basketball. The doctors are continuing to monitor my progress with regular CT scans of my head. We will also continue to fight the brain cancer with chemotherapy, although it has not yet been determined when those treatments will resume.
So…there’s my big update after all this silence. I apologize for going over 140 characters to explain it all.
COMING NEXT: A stunning gift arrives on my front porch.
By Alicia Ostriker And all this while I have been playing with toys A toy power station a toy automobile a house of blocks And all this while far off in other lands Thousands and thousands, millions and millions— You know—you see the pictures Women carrying their bony infants Men sobbing over graves Buildings sculpted by explosion Earth wasted bare and rotten— And all this while I have been shopping, I have Been let us say free And do they hate me for it Do they hate me From Poetry After 9-11: An Anthology of New York Poets last year's post: How to write a poem after September 11th
One month ago today, the results of my last MRI brain scan produced one of the Scariest Fridays Of My Life. Today the exact opposite happened. The very same MRI tube spit out a new man with a new concept for a casual-dining restaurant chain: Thank God It’s Monday.
Quick refresher: Besides confirming the recurrence of a malignant brain tumor, the July 30 scan showed further growth in a dangerous buildup in fluid and pressure around my brain that had my doctor so worried he wanted me to report immediately to the emergency room lest I have a seizure or stroke. I managed to talk my way out of that, but the following week I was shifted to a new bi-weekly regime combining intravenous chemotherapy called Irinotecan (CPT-11) with a companion drug called Avastin (which can starve blood supply to tumors by restricting arterial growth around them). I’ve had two of those treatments so far, and my third is set for tomorrow morning.
Quick update from today: I got the unexpected, incredibly good news that in just one month the new treatment regime has not only halted the growth of the recurrent tumor in its tracks (which is the best I was allowing myself to hope for), but has actually wiped it mostly off the map. What was a dense, 2.1-centimeter-in-diameter growth that I compared last time to a comet with a long tail showed up in today’s scan as a white, wispy sheen of barely visible light in the picture. A growth that might easily have muscled up even more to become the new Bully of my Brain now looks instead like a scrawny sissy who got beat up and left in a roadside ditch on its way home from school. That tumor is cryin’ for its Mama to come pick it up. And the fluid buildup on the outside of my brain has significantly diminished. My doctor is as happy with the results as I obviously am. Talk about happy hour. Hey bartender, mix me up another one of those nice new chemo cocktails right away.
Quick update on prognosis: The doctor says the Irinotecan/Avastin therapy looks so promising in controlling my cancer so far that he expects me to squeeze many, many more months of high-quality survival out of it. I’m set for four more of the bi-weekly infusions to take me to the end of October. After that, I’ll get another scan and based on that he may be able to scale back the dosages I’m getting (if the results are good) or switch me to one of many more alternative combinations of agents that are available (if the cancer shows signs of fighting back again). Meanwhile, on the fluid-buildup front, he expects it to diminish even more and eventually disappear with the help of yet another medication he’s throwing into the mix.
Quick update on the quirkiness of it all: I wasn’t scheduled to even get any of these results until an appointment that was initially scheduled for tomorrow afternoon. But after my doctor took a sneak peek at the scan an hour after it was completed this morning, he had his nurse call me at home immediately because he didn’t want me to have to wait even a day to hear the great news. And he even moved up my appointment a day so I could go right back in this afternoon and go over the results in detail with my sister Kathleen, who came here from Las Vegas to be with me in case this turned out to be another topsy-turvy week of medical news. Instead, it will be a week to celebrate. All the prayers and positive thoughts and energy that people are sending my way appear to be working.
Quick kicker line (courtesy of my buddy Roger Roy) about getting so much happy news from a single brain scan: “Seems like the only thing they DIDN’T tell you they found inside there today was the key to Claudia Schiffer’s apartment.”
I can’t top that. Thanks Roger, and thanks to all the rest of you who have been tracking my progress and sending me all your love and support. You’ve been with me through the rough times, so I wanted to share this good news right away.
Scientists peering deep into space recently announced they have found a small black hole way the hell out there belching a vast bubble of hot gas into the universe. They say this perpetually burning balloon of matter is 1,000 light years (LIGHT YEARS!!) across. That seemed to me at first to be so unimagineably big and scary that it defied the human capacity to imagine, let alone be scared. The picture of the gas bubble is at left. Click this link
to read the whole story.
But you don’t even need to read the story to instantly grasp the basic questions raised by this development. What if we look out the window one day and see that one of these sputtering black holes has backed into our galactic driveway, parked within range and aimed its flame-belching exhaust pipe right at our humble home planet? What are we supposed to do then? Load Bruce Willis onto the space shuttle and send him up there to put the fire out with some giant, nuclear-bomb-powered extinguisher? I don’t think so. This situation sounds way more serious even than the familiar killer asteroid that we already know how to eliminate. Thanks to Hollywood, that apocalyptic scenario seems almost pedestrian at this point. But for this gas bubble thing, the human race may need a Plan B involving a representative even bigger and badder than Bruce Willis. Maybe we’ll need to line up someone like aging NBA giant Shaquille O’Neal. Could Shaq kick this thing’s ass? Maybe. Maybe we could give Shaq command of the International Space Station along with our whole fleet of space shuttles and some rebuilt Saturn V rockets from the Apollo program, then rig them all to a wheel as wide as one of Saturn’s rings that would turn some sort of Moon-sized valve and slowly choke off the jet of cosmic gas. Sounds cool. But on second thought I don’t think that plan works either. It just doesn’t seem like something you turn around on short notice in the face of such an extinction event, especially now with NASA’s budget being cut and the space-shuttle program being retired next year. Sorry, Shaq. But good luck with the Celtics this year, either way.
Now, with the “let’s-go-up-there-and-kick-this-thing’s-butt” option off the table, I can see how lots of scientists might start thinking ahead to a Plan C, even though one of these bubbles hasn’t popped up next door yet. That is: We must design and build sophisticated new spaceships able to transport continent-sized, environmental-control-and-life-support systems that will allow us to propagate our species far beyond Earth, sending humans to colonize other planets in distant solar systems. Maybe that can save us from stuff like this. But then you start running the numbers and things get big and scary again. The most distant human-made object now travelling through the universe is the Voyager 1 spacecraft. It was launched from Earth way back in 1977 and even at its speed of 38,000 miles per hour has only now made its way to the outer reaches of our own little solar system. According to my quick research and calculations, if that burning cloud of gas in the picture up there is really 1,000 light years in diameter like the story says, it’s big enough to swallow nearly 800,000 solar systems the size of ours in one gulp. Luckily it is located in the galaxy NGC 7793, which is 12 million light years away. But if something like this ever were to bubble up within the friendly, 100,000-light-year-wide confines of our own Milky Way galaxy, we’d be lucky just to get a few hundred years’ advance warning. Then our would-be, spacefaring Pilgrims of human propagation would need to design and build a Mayflower spaceship capable of traveling at the speed of light in order to haul ass in whatever direction necessary to escape the bubble’s fiery blast. Sound doable? I don’t know if the technology will ever be there. The speed of light is about 17,500 times faster than our current technological pride and joy — that 1977 Voyager spacecraft — which in a discussion on this scale of astrophysics might as well be a 1985 Plymouth Voyager minivan.
So if we can’t kill it and we can’t outrun it, then how are human beings supposed to respond to this infinitely horrible and new fact of physics? The only answer I can think of is the same answer that gives me strength each day as I learn to think about, read about and live with the infinitesimally horrible fact of my individual case of brain cancer: We simply worry less about Physics and put more of our trust in Spirit. Whether you label it “God” or “Divinity” or “Religion” or ”Faith” or “Life” or ”Soul” or “Hope” or “Eternity” or “Knowledge” or “Art” or ”Love” or “Children” or simply “Spirituality” depends on your personal perspective. But whatever our cultural traditions, the common and ancient ability humans have to discern and wield this force in the universe and live our lives within its framework is the most powerful factor we bring to the cosmic table. It’s way more powerful than any black hole, rocketship or rogue cancer cell. Sure, Physics will always seem to have the home-field advantage out there in the natural order of the visible universe. The crazy, mind-boggling numbers and inevitably grim medical outcomes will always seem to fall on the side of Physics. But the visiting squad — Spirit – will prevail if we can learn to let it do its work. I have sensed this truth in a fuzzy, abstract way for my whole life. I’ve touched on it here in posts about prayer and despair and spiritual death. Now I can say that because of my own experiences since July 2009, I believe it in my gut and I am confident my spirit cannot be broken no matter what else happens to me physically. (NOTE: I’ll have more news on that front next week after my next MRI brain scan on Monday, a report from my doctor on Tuesday about how my tumor has responded to my new chemotherapy routine and an updated prognosis.)
I didn’t start this blog to preach or prescribe, so please don’t mistake the previous paragraph for a sermon. I started this blog simply to share — with anyone who wants to keep up — what’s been going on inside my head (medically and otherwise) during my brain-cancer journey. So because the whole line of thought triggered by the black-hole-bubble-scare story has been part of that, I figured I’d better share that, too. If it’s all too rambling and random for you, then just don’t take my word for it. But encouraging me further in this direction this past week has been spending an hour or so each evening reading the poetry and prose of a guy whose been dead now for 42 years – the Catholic mystic Thomas Merton. Now if you want to hear a real pro weigh in on matters of Physics and Spirit, you should read some of his stuff. Merton was born in France in 1915, but he did his best and most popular writing from 1941 until his death in 1968 while living the contemplative life of a Trappist monk at a place called the Abbey of Gethsemani way out in the middle of Kentucky. A friend sent me a great introduction to his work, a brilliant 2007 compilation and distillation of writings called A Book of Hours. The book is organized to lead a reader through a full week of Merton’s observations of the physical world and his meditations on its spiritual dimensions. Each of the book’s seven chapters is devoted to a single day, which is in turn broken down into its four parts (dawn, day, dusk, dark). I’ve mostly enjoyed reading each day’s whole chapter at one sitting – usually while sipping on a Budweiser or a glass of Jamesons Irish Whiskey on my back porch at the end of the day while dinner is on the stove. Though not strictly in the Trappist tradition, spending Happy Hour with Merton has been a great adventure – like sitting down to have a beer each night with Henry David Thoreau, Walt Whitman and my parish priest all at the same time. Anyway, Merton’s gift was his ability to perceive and express his vision of God, Spirit and divinity suffused through all of physical reality. The implication being, of course, that it is the spiritual that informs, animates, supersedes and is therefore more powerful than the physical — not the other way around. Here, for example, is a passage from the first chapter, describing Dawn on Sunday:
For, like a grain of fire Smouldering in the heart of every living essence God plants His undivided power -- Buries His thought too vast for worlds In seed and root and blade and flower, Until, in the amazing shadowlights Surcharging the religious silence of the spring Creation finds the pressure of its everlasting secret Too terrible to bear.Then every way we look, lo! rocks and trees Pastures and hills and streams and birds and firmament And our own souls within us flash, and shower us with light, While the wild countryside, unknown, unvisited Bears sheaves of clean, transforming fire.
Those lines are just Merton’s reflections on a simple sunrise on a Sunday in Kentucky, folks. But as I read them, I thought immediately of that picture of the interstellar gas bubble and wondered what Merton might have said about that. I’d like to imagine him saying something like ”Hi there, God. How ya doin’?”
According to his biography on Wikipedia, Merton died while attending an interfaith conference between Catholic and non-Christian monks in Bangkok, Thailand: “While stepping out of his bath, he reached out to adjust an electric fan and apparently touched an exposed wire and was electrocuted.” Okay, so maybe in the end the great devotee of Spirit turned his back on Physics at a critically wrong instant and it bit him in the ass. Still, I don’t think it means his side lost. My guess is that when the final buzzer sounded on his life, the last thoughts to pass through Thomas Merton’s mind had more to do with irony than with death, defeat or fear.
Way back when I started this blog, I described my terminal brain cancer diagnosis as “a gift that will give me the opportunity to learn more than I thought I would ever know about the mysterious line between life and death.” When the Romenesko news-industry website picked up my story and zeroed in on that line near the bottom of a long post I had written, the editor inside me cringed. That was because, taken in isolation and read out of context, seeing the idea of cancer presented as some sort of “gift” struck even me (its author) as weird — just a throwaway, feel-good cliche. So I expected anyone who didn’t read the whole post just to dismiss my outlook as an irrationally blithe denial of my grave situation — just some random crazy talk coming from a cancer rookie working overtime to cheer himself up.
Well, guess what? Nearly a year has passed since I wrote The Death Bird, and I’ll be damned if I’m not still feeling that way today, even more than before. I’m no longer a rookie at this stuff, either. I’ve now had two successful brain surgeries, six weeks of radiation therapy, 11 months of maintenance chemotherapy pills, loads of MRI scans, a recently confirmed recurrence of my brain tumor and just Tuesday began my third course of chemotherapy — this time in a more powerful, intravenously administered form. And I’m still alive and learning more about that mysterious line. My latest confirmation came when I shared an outpatient ”IV-drip room” Tuesday at MD Anderson Cancer Center/Orlando with two other patients in succession; their names were Harold and Dave. Both have had far longer, tougher roads that me (Stage 4 lung cancer, liver cancer, colon cancer, metastasis-to-brain cancer, long hospitalizations, infections, induced comas, take-home-chemo IV kits, the works). These guys are true cancer ninjas – still keeping their spirits high and fighting hard. But we shared something else besides our cancer stories, a nice 8th floor view and a couple of cozy recliner chairs. We had in common the fact that none of us is in despair.
I recognized that quality in both Harold and Dave immediately because the concept of “despair” has become a major part of my brain-cancer-related investigation into the unsecured borderline between life and death. My research and reading on this topic many weeks ago led me down an old-but-surprising path from my college days and eventually on to an even older story from the Bible that almost everybody knows.
I got my college education in Kansas City, Mo., at a school called Rockhurst, a small, Jesuit-run, liberal-arts institution. I did not major in philosphy but the subject was a big part of the core curriculum and the history and spirit of philosophy permeated the campus. Some of my dearest friends were philosophy majors. You could be hanging out at the library, the student lounge or even a keg party and hear names like Kant, Hegel, Kierkegaard, Nietzsche, Heidegger, or Sartre tossed around in casual conversation. So even had you spent four years cruising through Rockhurst College not as a disciplined scholar of philosophy, but rather as just a slackjawed mouth-breather with your convertible top always down, it would have been hard to avoid having a few such names as those slip right into your head and stay there, like little fireflies of fake knowledge.
One of those bugs that got stuck in my teeth carried the scary-cool name of Soren Kierkegaard, who was a 19th Century Danish author and early existentialist philospher. One of his major works I’d heard about in college was a book called The Sickness Unto Death. I never picked up that book and read it, so I didn’t even know what it was really about. But the title stuck with me, if for no other reason than that I thought it was an ultra-badass name for a book. Then, upon becoming a brain-cancer patient nearly 30 years later, just recalling the name of that book one day suddenly made me think it might be directly relevant to my personal medical situation. So on July 6 I thought, “What the hell? I’ll just see if I can download The Sickness Unto Death on my Kindle and see what it’s all about.” (Thanks again to my generous former Orlando Sentinel colleagues for that Amazon Kindle you got me as a get-well present last year.)
So that was my unexpected path. Now on to the destination that really surprised me.
As I began reading, I quickly learned that The Sickness Unto Death is a treatise about despair. “Okay,” I thought. “This could come in handy for me, because being diagnosed with a deadly form of cancer unavoidably will stir up certain human emotions in the soul — starting with the constant white-noise of medical uncertainty, leading naturally to pangs of anxiety, then fear, panic and eventually, if you’re not careful, sweeping you down into a whirlpool of utter despair. I have felt twinges of each of those emotions from time to time over the past year and have tried to manage them aggressively so as not to be overwhelmed by any of them. So what can Kierkegaard tell me that might help me now?”
Well, as I learned next, the origins of the ultra-badass title ”The Sickness Unto Death” sprang not from an 19th century philosophical tract, but from the Holy Gospel According to John (Chapter 11). And the scary-cool dude who came up with that phrase was not a gloomy Danish thinker with a hard-to-pronounce name, but Jesus Christ, himself. The phrase comes from the familiar story of the raising of Lazarus from the dead. A quick recap: Lazarus was a pal of Jesus’ who lived in Bethany with his sisters Martha and Mary, who are also recurring characters in the gospels. When Lazarus falls ill, the sisters send out word to Jesus in hopes that he will take a break from his preaching to swing by and cure their brother — just as he has cured so many others. When Jesus hears about the situation, he tells his disciples they would go to help Lazarus soon but that there was no huge rush because Lazarus is only “asleep.” “This sickness will not end in death,” Jesus says. So they make their way slowly, but by the time they arrive at Mary and Martha’s house it turns out that Lazarus has already been stuffed away and stinking in his tomb for four days. Like modern-day Americans frustrated with our complex healthcare system, Martha and Mary seem slightly miffed at first – they rush out to greet Jesus with a gentle complaint that Lazarus would not have died had Jesus just gotten there sooner to provide full miracle benefits (with a reasonable co-pay for the housecall, of course). But Jesus calms the sisters, tells them not to fear, and in short order he calls Lazarus forth from his tomb. Wow. Story over, right? The greatest miracle we’ve seen yet, right? Well, yes. Way back when I was a little kid hearing it in church with my parents the surface plot was all it took to convince me of Jesus’ superpowers. But closer, more devout listeners understand that the story’s meaning goes much deeper than a big magic trick. It’s a story about faith — the belief Lazarus and his sisters have in Jesus is so strong it is able to bring a dead man back from the grave.
But in Kierkegaard’s analysis, the most interesting angle of the story is not that Lazarus was physically dead and came back to life — but that he was never REALLY dead to begin with. Meaning he was not spiritually dead. And DESPAIR is the word the Dane uses to describe such spiritual death. So, in the end, he says, it is DESPAIR that is “the sickness unto death” — not nasty, physical stuff like cancer or any other sickness or disease. And in the book, the antidote that he prescribes for despair is faith, specifically Christian faith. And I think all of Kierkegaard’s other existentialist buddies later made fun of him for being such a religious sap.
I’m still not a scholar, and all of the above is just the result of my drive-by Kindle reading. Despite the length of this rambling post I know I’ve blown past a lot of nuance and boiled stuff down so much here that I’ve made a hash of it. But this part of my learning experience was definitely worth a $4.95 download, and I wanted to share it because it has helped me frame the positive attitude about my future that lots of people keep asking how I maintain. The point of this post is not to preach the Bible, Christianity or 19th Century existentialism – but just to endorse faith, period. Faith in SOMETHING — whether it’s in a Supreme Being, the teachings of Jesus, some other set of religious principles, the eternal nature of human spirituality, the love of family, friends and everyone you hold close or simply faith in your own higher self. I happen to have a wonderful church and priest helping me down my own road right now. I think anyone, whether religious or not, can find what they have faith in through careful listening, meditation and prayer, and once they’ve found it it’s not necessarily anyone else’s business. The main thing to remember is that faith is ultimately what protects you from despair — which is a scary thing that can be caused by lots more than just some dumb, terminal illness. Despair can come from family troubles, financial worries, constant mental strain, career obstacles, loss of self-assurance, or whatever. Lots of regular folks who are presumed to be alive and well and functioning normally are actually walking around out there in total despair, a condition that I now am confident is worse than death, itself.
Okay, that’s enough dimestore philosophy for now. Like I said earlier, I could instantly tell from just talking to Harold and Dave –the two guys who sat next to me in the chemo room Tuesday – that despite the gravity of their illnesses, neither was in a condition of despair. I could tell they were both staying very strong. And I could tell they both had some kind of faith in something, even though we didn’t talk about what that was. So…far from being exhausted and discouraged by what might have been a dreary new medical procedure for me, I came away from that chemo room feeling inspired and thinking again about the Lazarus story and Kierkegaard’s book. Because they teach that even if we are suffering from some serious disease that’s hard to control, it is always within the power of each of us to overcome the worst sickness of all – the sickness that is unto death.
After the near-emergency on Friday and getting through the rest of the weekend in fine form, I had an excellent, information-packed and ultimately optimistic appointment with my neuro-oncologist today (Monday 8/2/10).
First the good news: I was NOT immediately handcuffed to a hospital bed and rushed into surgery for some sort of emergency procedure that would have blown another big hole in the next month, or at least the next week, not to mention my head. Instead, my changing condition and the alarming fluid build-up around my brain appears to be very treatable by switching me over immediately to a bi-weekly intravenous infusion of a new cancer-killing chemo agent called Irinotecan in combination with a liquid drug called Avastin, which has shown good results choking off the blood supply to brain tumors. The infusions will involve sitting in a chair with an IV drip in my arm for about three hours once every two weeks. That’s pretty manageable in a world where similar regimes for other cancer forms involve sitting in the chemo chair for many more hours at a time on consecutive days. My heart goes out to people who must go through that.
Dr. Bobustuc and I sat down with his nurses and went over the results of my detailed MRI scan from last week. So now for the bad news: The scan confirms definitively that I have a recurrent tumor at the margin of my second surgical cavity that was created on June 2. The new growth is only about 2.1 centimeters (or .8 inches) in diameter at its widest point, but Dr. B believes that this tumor is actually the source of the fluid that is building up around the edges of the brain. That’s because the fluid buildup is visibly much richer in protein than the regular, clear Cerebrospinal fluid that naturally surrounds the brain and fills its various cavities. As such, the bad fluid shows up in the scan as a much darker area than the CSF. So you see? I really do have sort of a miniature Deepwater Horizon oil spill disaster going on inside my head. That’s what I get for making fun of Mother Nature when I made that joking BP comparison in my last post and an even earlier post. I obviously need to get some new material before dead pelicans start washing out of my ears and showing up on my pillowcases every morning.
Anyway, Dr. Bobustuc is actually more immediately concerned about the danger posed by the fluid buildup than he is about the tumor, itself. The fluid could cause pressure leading to a seizure or even more serious collapse. But so far, I haven’t even had so much as a headache from it, or any weakness on my left side or any sign of debilitating fatigue stemming from pressure on my brain. I’m still walking my dogs every day, doing chores and even getting some regular work done. Dr. B put me through some clinical drills to prove all of that to his satisfaction, and was thrilled by my performance. He thinks it definitely buys us time to attack that little tumor with this new, high-powered chemo cocktail until we knock out it’s fluid-producing ability. Then the fluid it already has produced can be naturally absorbed by my body. So I’ll have time to get two chemo infusions this month before getting another MRI scan on August 30 to monitor progress. Dr. B told me he expects the next scan to look very good, with the tumor either stopped in its tracks or maybe even showing signs of shrinkage. And if I continue on the routine, it could potentially halt further progression of my GBM brain cancer for many more months.
In the alternative, I could have been rushed in to have my head opened up to directly drain the fluid now. But that would have meant I’d have to hold off on attacking the tumor with powerful liquid chemo for a few weeks until my brain could heal from the more invasive procedure. And during that pause, more bad fluid might just start building up all over again. So we’d be treating the sympton rather than the source of the leak. Well, one might ask, why not just go back in there all the way and cut out the recurrent tumor itself? Well, that might just perpetuate a process by which every time a tumor is removed — a new one will simply appear in short order at the edge of the cavity. And here we go all over again.
On the MRI scan, Dr. B. showed me something I had never seen before — my recurrent tumor does not show up as a smooth sphere, but this time is more in the ragged shape of a comet. Since I can’t post the actual MRI scan here I did the next best thing and found a picture of Halley’s Comet to illustrate. It really does sort of look like my new tumor. If you can read the labels on the photo, the biggest, brightest, roundest part (labeled the “coma”) is the 2.1 centimeter part of the tumor. But then as it trails off into the Dust Tail and Ion Tail areas, it looks just like a tail that is now visible flowing off the right edge of my tumor as it shows up on the MRI scan. And inside my head right now, that visible trail is already drifting back into a more central cavity or “ventricle” that is like a passage way through other cavities and into other parts of my brain. That means further surgery could get scary. You could keep cutting off the round, highly visible part of the tumor and the tail might just keep producing another one at the edge of the new surgical cavity — sort of like you just pruned back a tree branch that will eventually just produce a new, faster-growing bud. That’s basically what’s already happened to me. But an even scarier prospect is you keep chipping away so much that the tail gets really angry and starts to push to grow tumors in newer, deeper directions. Yikes. I don’t like the sound of that at all. And if you start chasing that tail around all over the place to cut it out, you could quickly get into whacking out big, really more useful parts of your brain. And I don’t see that being part of my game plan.
And who knows what else can happen in this crazy world of cancer? I’m learning about the absurdities of this disease not only on my own journey but also by sharing and learning from the experiences of other dear friends of mine who have been are currently being treated for other forms of the scourge. Because I live in Orlando, I can visualize the potential for this stuff spreading around in a way that my many friends who also live here could easily relate to. I just imagine all those angry, sweaty little Mom, Dad and Kiddie Cancer cells taking off like a bunch of Orlando tourists armed with Park Hopper passes — eager to treat the rest of my brain or body like it’s some sort of new, cancer theme-park attraction. (Kid #1: “Hey Mom let’s go to Cerebral Cortex Land!”, Kid #2: “No! I’d rather ride down Frontal Lobe Falls.” Irritated Dad: “If you kids don’t start behaving, we’re going to get in the car and take you down to Pancreas World. And nobody EVER has fun down there!”
So I’m on board with the heavy-duty, liquid chemo plan for now. Let’s just try to poison this crap and see how it goes.
Meanwhile, let’s just keep our chins up and keep making fun of my brain cancer while we still can. I think that pisses it off more than anything.
Thanks for all your support and encouragement here. It really has meant the world to me, and helped me keep a positive attitude.
Yesterday (Friday, 7/30/10) featured another wild and momentarily scary ride on the brain-cancer roller coaster. I went in for my regular MRI scan in the morning. It took about 90 minutes instead of the usual 30-45 minutes because my doctors had ordered some extra studies to zero in on two things I’ve mentioned before: The fluid accumulating around my brain and a new spot (thought to be a surgical abrasion) near the edge of my new surgical cavity from the June 2 operation.
I wasn’t scheduled to meet my doctor to go over results until this Tuesday. So after the scan, I just went home and got to work on some freelance projects that have been piling up on my desk. I was happily entering the homestretch of the workday and looking forward to a relaxing Friday evening when my cell phone rang. The woman identified herself as my neuro-oncologist’s nurse.
She said: ”Doctor Bobustuc has just looked at your scan from today, and he wants you to come to the hospital right now.”
When I asked if that meant his office at the hospital, she said: “No, you need to get yourself to the emergency room and have yourself admitted. Now. Like, tonight.”
When I asked why, she said: “Doctor Bobustuc is very concerned that the fluid buildup around your brain is growing rather than diminishing. He is also concerned that the nodule we are watching has doubled in size since June 30.”
That’s was certainly not the kind of news I was happy to hear on a Friday night less than a week after celebrating a full year as a GBM cancer survivor. But it certainly got my attention.
Luckily, Dr. Bobustuc himself soon was able to get on the line to explain the situation in further detail. He said I would probably have to have the excess fluid drained ASAP. He said that we would also have to discuss how to attack the growing nodule at the edge of the cavity — which he said the MRI tests suggested was recurrent tumor. He suspected that would mean switching to yet another chemotherapy routine (my third, after being on my second regime for only one month). I asked him if the Big Brain Drain operation would be that very night, and he replied that it might be hard to line it up that quickly or even any time during the weekend. I cringed, suddenly envisioning two or three days laying around in a hospital bed doing nothing but thinking about my brain while watching the latest, relentless footage from the BP oil spill on a small, ceiling-mounted television. So I told the doctor I felt absolutely fine and would rather wait if we could. He asked if I had any symptoms such as headache or weakness in my left side. I told him absolutely not. That pleased him immensely, and he said it was very encouraging. He said rather than rush me into the hospital, he now believed he could simply prescribe me some steroid drugs to ease or prevent brain swelling and that I could manage on my own through the weekend at home. I breathed a big sigh, then headed over to the hospital pharmacy to pick up the new steroid drugs and (hopefully) get a refund on the extremely-expensive-but-now-useless chemo drugs that I had just picked up that morning. Luckily, I was able to do both.
I got luckier still on my way to the pharmacy when I was standing in a hallway and out of an elevator pops Dr. Bobustuc, himself. He was thrilled to see me in the flesh, and said I looked even stronger and better than I sounded on the phone. He felt the right side of my head and said there was no indication that the excess fluid inside was causing any undue swelling — at least not on the outside. He said he thought the fluid buildup might be stemming from irritation caused by the growing nodule, tumor or whatever the hell it is. I guess we’ll find out. Even though it has grown, it’s still pretty small — maybe just the size of a nickel.
My doctor will spend the next couple days conferring with my neurosurgeon and some other doctors, and I am scheduled to meet him Monday. He told me to be prepared either to be admitted for an additional operation or perhaps to begin a new chemotherapy treatment featuring direct, intravenous infusion. That’s something I haven’t yet experienced on this journey — I’ve been a pill-popper until now. But IV chemo is actually what most patients suffering through other forms of cancer must learn to endure. So I can’t really complain about the switchup.
I’ll know a lot more next week. But I wrote this post anyway because I didn’t want to cram all this necessary background information from Friday into a future update that will probably contain more news.
My mental and emotional state is still very positive. I am still lucky to be alive. I am staying calm. Many people with my diagnosis might be dead by now or dealing with multiple, large and inoperable tumors if they’d even made it this far. And until further notice, all I’m dealing with is a leaky brain and a stray, nickel-sized, something-or-other.
Of course the news could get worse in relatively short order. But no matter what happens, no one or nothing — not even cancer — can ever take the last year away from me. And that’s what keeps me happy.