SAME TIME TOMORROW

Scaring the Neighbors 2: Meet Half Ass

Posted in Uncategorized by Sean Holton on June 30, 2011
Remember Bad Ass and Crazy Ass? They were the
 

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

Bad Ass as the best look while other voters thought

Crazy Ass

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.

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,

Half Ass knows he'll get his groove back soon

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.

24 Responses

Subscribe to comments with RSS.

  1. Laura said, on June 30, 2011 at 6:57 am

    Ah, I’m *so* glad to read a new post from you — the long silence was a bit scary, and I was about to write Craig and ask him if he knew what was up.

    Thank you for sharing the details of your treatment. I know that brain zapping is enervating, and I can well imagine that you were too wiped out to post any updates. But I’m happy to hear that you’re going to make an effort henceforth.

    I have a tip for you: Have you thought of installing Dragon “Naturally Speaking” software on your computer? It’s supposed to have improved greatly in the past decade, and you could spend your energy fixing the inevitable mistakes the voice-recognition system will make, rather than having to hunt-and-peck the entire text with your right hand. It would save you a lot of time, and give us, and you, the benefit of more of your wit!

    P.S. As a newspaperman, weren’t you glad that you found out about Bin Laden the ‘old fashioned’ way? There’s a thrill in reading front-page big news hat just can’t be had on the Web.

    • Sean Holton said, on June 30, 2011 at 8:50 am

      Thanks Laura….and yes I am trying out Dragon already, courtesy of a free copy from craig, david and david’s nephew who works for the company that makes it. It’s great stuff

  2. Jane said, on June 30, 2011 at 8:47 am

    I am so glad you are keeping up your warrior position. That’s super-important in your situation. Does M.D. Anderson offer yoga for cancer patients? I think it would help with your balance issues to heighten your sense of proprioception — how to know where your body is even if you have your eyes closed.

    Stay strong!

  3. Dexter said, on June 30, 2011 at 9:04 am

    Hi LL ! Do you still have Chopper? I have a new dog (a Black Labrador Retriever), named Pogo, because she sees a bird or a squirrel and she jumps up and down repeatedly as if she were on a pogo stick.

    Now those carts…rude shoppers who act like people in motorized carts inside stores are “in the way”, well, they are the same people who drive like you-know-what-kind-of-holes.
    I walk into a giant store , using a cane, and the attendants sometimes steer me to one of those battery-powered carts, but as long as I can, I am resisting. Now some stores are providing shorter grocery carts, with double-decked baskets for shopping. Those carts are the best walkers ever made! I can walk pain-free all over the store using one.
    Well, my friend, thanks for this update. I swear, you and “9-11 Survivor, Sort Of” (Jim F.) from Craig’s blog both amaze me with your strength and ability after going through what you must do.
    I never ran into guys like you two before. So yes, stay strong.
    Dexter Crawdad from Ohio.

  4. Jamie said, on June 30, 2011 at 9:43 am

    You never cease to amaze me. The graphic becomes fascinating and the progress personal all while wishing you well. Besides who else would combine Ol’ Half Ass with Shakespeare’s Tempest as you become something rich and strange serviced by sea-nymphs.

  5. Janice Blase said, on June 30, 2011 at 12:45 pm

    Damn! You’re one of the best writers I’ve had the pleasure to read, and one of the strongest people I know. Stay strong, Sean. This has been an incredible journey so far, and I have no doubt it will continue to be an amazing ride. Bad Ass, Crazy Ass and Half Ass…yep! Love ‘em all!

  6. fish said, on June 30, 2011 at 1:34 pm

    Agree with Joe K. over on FB, Sean, love to see that you, Bad Ass, Crazy Ass and Half Ass are still kicking ass! and typing names! thinking of you!
    fish

  7. Justus Hellmuth said, on June 30, 2011 at 7:55 pm

    Sean, You and Hawkins are my heros. Justus

  8. Pat & Becky said, on June 30, 2011 at 9:33 pm

    We’re pulling for ya, sean.

    Light and Love…

    P & B

  9. Ed Earl said, on June 30, 2011 at 9:59 pm

    Brother,

    Made me spit take George Dickel and shed a tear simultaneously. I love you, man.

    Cuz

  10. claudine hellmuth said, on July 1, 2011 at 8:15 pm

    Amazing post Sean. I am honored to have you as a friend half ass or crazy ass or bad ass!! xxoxoxox

  11. Dexter said, on July 1, 2011 at 8:19 pm

    Hero? Oh hell yes you are. Now don’t blow off a finger with fireworks this weekend!

  12. Craig Dezern said, on July 1, 2011 at 11:05 pm

    Great post, Sean. And thanks for the update. Beautifully written and all the more amazing since you dictated it!

  13. Sean Holton said, on July 2, 2011 at 9:00 am

    Thanks for all the comments and encouragement. Having friends and fans like you all in my corner makes any damn brain tumor look lots smaller. So you guys are better than Tomotherapy. And remember, Craig…my sidekick Jim gets all the credit for the typing. I loved just recalling how Johnny Carson used to regularly rip Marlin for his avoidance of danger whenever Jim came on the show to play with wild animals. Great memories. Love you all back.

  14. Becky Bultemeier said, on July 3, 2011 at 11:15 am

    Sean,
    As always I am riveted to every word in your post, and am so glad to see you writing again. Your sharing this process is a phenomenal incite to dealing with what life puts on us and helps me in dealing with all aspects of what life deals me. Thank you. It is so good to hear from you. We want “Crazy Ass” to pull out ahead of all the other “ASSES”. YOU GO CRAZY ASS! Lot of love, Becky (Royal) B.

    • Sean Holton said, on July 4, 2011 at 9:10 pm

      Thanks Becky. Love you And Pat so much, tooI love all your check-ins and comments here

  15. Ann Hellmuth said, on July 5, 2011 at 5:07 pm

    Sean

    don’t know how you remember all those movie scenes. I can hardly remember what happened in Treme last week. I’m so proud to have you as a friend. I don’t care which ass.

    Ann

  16. Maxtrue said, on July 7, 2011 at 8:51 am

    I wondered where you had been. To follow the metaphor, we need the Right side…
    You have some of that Seal Team in your blood. Its war again Sean and your stamina
    is amazing and inspiring as usual. Thanks for keeping Smart Ass alive and kicking…

    Max NYC

    http://www.sciencedaily.com/releases/2011/07/110706101603.htm

  17. bean said, on July 7, 2011 at 9:09 pm

    glad to hear from you – even from that silly half-ass – after the long quiet. stay strong…make adjustments as needed. subscribing to rss feed ….

  18. Steve Doyle said, on July 8, 2011 at 3:53 pm

    Sean
    The real irony in all this you are enduring — and God bless for that — that you finally at least have a reason for doing something half-assed. The rest of us shamefully do it all the time and waste the blessings we have received. Among those blessings is the inspiration you share for everyone. You keep moving forward, however you must, the rest of us will fall right in line.
    Take care,
    Steve

  19. Jennifer Brown said, on July 13, 2011 at 1:14 am

    i have not read your whole story. i just came across your blog. my dad fought gbm stage 4 as long as his body would let him but he was never really quite there. it is so nice to see someone who is able to communicate so well! what a blessing. can’t wait to read more about you.

  20. Karen Dillawn Fenter said, on July 13, 2011 at 1:30 am

    Hi Sean,
    Thank goodness you are in Houston and don’t live far from M.D. Anderson, which is one of the great cancer centers. I don’t know if I could deal with what you are dealing with and keep going. You are a great inspriration to everyone that you meet.
    Take care,
    Karen

  21. Kip Mitchell said, on July 13, 2011 at 5:39 am

    YOU are a wonderful writer and a very brave man.

  22. Kathy Siner said, on November 30, 2011 at 7:31 pm

    What an incredible person… read this via a posted link on facebook, and am impressed by the bravery, perspective, writing, and humor. I hope this blog is made available to a wider readership, esp. to others with cancer.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 31 other followers

%d bloggers like this: