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.