Friday, December 24, 2010
Twas The Night Before The Day Before Christmas
Thursday, December 16, 2010
STAYIN' ALIVE
Okay. I know it's been a while since my last post. I know I've left some of you dangling with either incomplete or altered information regarding my health. I know I should have some kind of real excuse or explanation why it's taken me so long to put finger to keyboard. I should, but I don't. So I can't. I'm pretty sure it's Someone Else's Fault, tho.
All I can say for sure is that the Continuing Story has been just as complicatedly confusing as previous installments. So, it's not for lack of material that I have been tardy. I could write a BOOK! (or at least a Blog).
Let me just start with Current Events and work backward until the time is is all accounted for or I nod out. It's after midnight and I'm still awake. If I should doze, I know that I will bolt upright wide awake again at 2am. That's the way this pain pill I take (sporadically) works. Even though it says right on the side of the container “may cause drowsiness” it has the exact opposite affect on me. And, strangely, always at 2am. No matter what time of day I pop the pill, I can bank on the 2am mandatory wake-up. What is further nutty about this side-effect/ reaction is that fatigue and the sleepys have been my biggest problem of late. I also have occasional stomach cramps which I am using the meds to treat.
Then there's the skin irritation. I had noticed several weeks back that I was getting TheItchThatWouldNotBeScratched on my back(always that place I can't quite reach) and that it seemed to be progressing to other areas, remaining unquenchable. Dr Vencatraj at the local Hope Cancer Center said she thought it was leftover extra-effects from last summers Chemo.
This weekend I am going for a visit to The Cancer Treatment Centers of America
Midwestern Regional Medical Center. (or, “CTCA Mid-Med” as I now will begin referring to it) for a new round of poking, prodding, imaging and bloodletting. As you may recall, I have been to visit The Baylor Medical Center in Dallas and The MD Anderson Cancer Hospital in Houston.
I intend to keep visiting facilities like these until I get the answer I want.
Actually, it is my KORA Microphone-mate Devan O'Neal who found the CTCA for me. Back a few months ago when I was battling the Admissions Department at Anderson and deciphering funds and payments from First Care Insurance, I was becoming frustrated to the edge of a nervous breakdown, I decided to divvy up the load of inquiries I was trying to (unsuccessfully) handle myself. The Admissions People at MD Anderson turned out to some of the most rude, unco-operative, unhelpful and mean people I've yet to deal with. Not only were they obstinate, but they were wrong about the obstacles to treatment they kept throwing in my path. (I keep saying “they”, but, in truth it was one, single callous bureaucrat that gummed up my own personal works).
So Devan took on the task of trying to crack that particular nut. Unlike me, however, she went looking for somewhere else to take my business (Brilliant!!) after a couple of rounds with the MDA woman and found CTCA.
Now I know I should judge these places primarily by the services, treatments, and results they give, but these folks (so far) have been so polite, so informative, so accommodating I could not help but be impressed.
It is now unlikely that I will be able to get a new or gently-used liver. I am off the transplant list.
My condition is considered “inoperable”
There is no specific date or timetable for an obvious decline in health
There is, likewise, no set time or occasion that I would have to stop “working”.
The radiation treatment will not be used, nor do I qualify for any of the current Clinical Trials going on.
Where I once wasn't sick enough to warrant a prime spot on the liver-list, now I am too sick to qualify for any of the lists. What I'd like to know is: when was the time “just right”? And how did we miss it? Was it a window of weeks, days or minutes?
Both Doctors wanted me to begin a new chemical regimen featuring “Nexavar” a new Miracle Drug available at selected pharmacies for a mere $3000 a month. Even that took weeks of haggling, finagling, wheelin' and dealin' to secure. And then, just as I was ready to begin my closely supervised oral treatment, the CTCA possibility opened up.
Okay, I think we're up-to-date now. I had many many more notes for topics of discussion and debate, but they'll have to wait. I'll try to keep you posted on the latest rounds from CTCA Mid-Med. Hopefully I'll be able to update more frequently before the year expires, and then regularly in the New Year (where have I heard that before?).
Thursday, November 18, 2010
Run For Roy
Registration for this event is open from: Oct. 18, 10 - Nov. 19, 10
TWS Red White & Blue Charity Extravaganza
Where: Texas World Speedway - College Station, Texas
Nov. 20, 10
Time: 12 pm - 1 pm
The Run for Roy 5k will sprint off at 12:00 pm. This one of a kind Fun Run will find you racing at a world renown racetrack. The route will take place on track at Texas World Speedway, with t-shirts provided for pre-registered entrants and prizes to be awarded to each four age divisions, male and female. Tickets are $20 in advance and $25 the day of the event.
We are proud to announce proceeds from the 5k Run for Roy will benefit Roy Gene Munse, the local morning show host from 98.3 KORA (Follow Roy's blog here). Please join us in the Run for Roy 5k at TWS to support Roy Gene in his fight with liver cancer and his route to a liver transplant. We have all listened to and enjoyed the Roger and Roy show in the Brazos Valley. Your 5k registration will benefit a world class gentleman who has entertained and put smiles on so many faces in the Brazos Valley.
Saturday, August 14, 2010
The Long and Short of It
First off, and right to the point, the news isn't good. I could sense that immediately when Dr. Walberg asked me if I was reading any long books. As fate/luck would have it, I'm right in the middle of the first book of the Stieg Larsson Millennium-trilogy. At least it isn't Tolstoy.
Chemo-Therapy has not only not shrunk the liver tumors, but they got bigger. Plus some new ones have set up camp. So instead the Weed-B-Gon of cancer, my doses were more like Miracle-Grow. I am not that good at reading scans like X-rays, and sono-grams and Magnetic Resonance Imaging. You could show me a black and white reproduction of an octopus and I'd think I saw vital human organs. But when the doctor showed me images side-by-side of pictures from May and then last week it was clear as The Visible Man model to me. Remember: I just needed to shrink the tumors small enough to swap livers. The Transplant was the whole reason for these 4-5 years of medical pandemonium.
So, off the transplant list, Chemo ineffective,what's a Poor Boy to do? That's what I spent the last week trying to figger.
I have few options remaining. One is a new Miracle Drug that costs roughly A $Billion Dollars, the other is a Clinical Trial to use some Not-Ready-For-Prime-Time therapy and another is start shopping for a nice looking urn. Actually my first move will be to secure a Second Opinion, probably from MD Anderson. I am still waiting for contact from the investigators on the Test Pilot Program. I also waiting to see how much my insurance will kick in for the meds.
In the meantime, if you'd like to help, you can get your very own commemorative green “Team Roy Gene” wristband at Maaco, Longhorn Tavern Steakhouse and the KORA studios 1240 Villa Maria. A $10 – 20 donation is suggested. And watch our website 983kora.com for other fun with fundraisers.
I'll letcha know any changes, updates and applications.
Thank you, God bless you and Happy Shark Week.
Wednesday, July 28, 2010
Studying For The Tests (A Continuing Story)
This Friday I (finally) return to Baylor Medical Center in Dallas to (hopefully) be given some sort of (positive) verdict. It's been a long, hard wait made only longer and harder by my problems trying to book my next procedures.
As you probably know by this point, I am rasslin' with a nasty liver featuring cancer tumors and scar tissue from Cirrhosification. If we can arrest the cancer growth (loitering), I can get me a brand new (or gently used) healthy liver. (See previous posts for excruciating and ceaselessly fecund details)
This was my Summer of Chemo with therapy starting in mid-May, and then a second application in June. I was to wait 4-6 weeks before strapping on the equipment for an MRI, blood-work and consultation to see if we'd done any good.
Long about week 3, post-hospital, I began calling for my appointment. It took numerous calls to succeed. Armed with only a phone number and a nurse's name from Texas Oncology, I proceed to wind through the matrix that is modern-day voice-directed phone answering. After a mis-button-press or two I finally got the voice mail, where I dutifully left my information: Name, Number, Date of Birth.
After a week of no reply, I re-entered the telephonic cryptogram and got the nurse who acknowledged my call, but said she couldn't decipher my (real) last name. Now, my (real) last name is Munse (pronounced MUN-see). It is rarely pronounced or written correctly on first meeting, so I am in the habit of spelling out my name after every utterance. I'm not saying she was LYING, but...well, maybe I AM saying that.
So I ask, once again, how do I get scheduled for an MRI and can I do it here (in B/CS) or need to head North? She says “Oh you don't need to call me, just contact the Magnetic Resonance Imaging department!” and “Yes, you have to come to Dallas so they can use the same scanners as they used for the original pictures in the morning and you can chat with the Doc in the afternoon”
So, says I, how do I get the MRI and Doc visit on the same day? She says “I can do that for you!” Then, wiping the foam and spittle from my mouth, I tell her to book me soon as possible. She tosses out a few dates (I had requested either a Monday or Friday, so as not to mess up my broadcast week too much). I say “Fine”. She says “Let me check with the Doctor and call you back” Only she doesn't. Call me back.
After a few more days go by Butch (from Maaco) offers to sic his wife, Nelda, on the lot of them. I hesitate and give it one more chance. This time I get the OTHER nurse (the one who treats me and my condition as serious as cancer). I think she can sense my imminent melt-down and moves quickly to calm me down. She gives me her direct line as well the one belonging to Bad Nurse. She says to call her (Good Nurse) if the other (Bad Nurse) fails to call by noon the following day. An audibly chastened Bad Nurse calls the next day at the studios. On the business line. Due to our flawless modern technology, the receptionist can't call you when you're in the production studio, so she left one of them “while you were out” notes from Bad Nurse. When I get into phone contact with Bad Nurse, she claims the biz number is the only one I have. Never mind that I've already donated several pounds of paperwork to several Baylor Med offices with all my information in TRIPLICATE every time I visit the premises for the last 5 or 6 years, THEY DON'T HAVE MY PHONE NUMBERS OR KNOW HOW TO SPELL MY NAME.
(Hulk Mad! Hulk Crush!)
There is actually much more to this story, some I've trimmed, some I've omitted. Bottom line is I'm going in on Friday morning to get tested and review results. I don't know what happens after that. I've quit trying to calculate what further treatments await with positive or negative result. I'm not even sure what CONSTITUTES a positive or negative result. I just take the next step after the current one is complete.
Meanwhile, on the fund-raising front, your green “Team Roy Gene” bracelet is now available. Get one for yourself, your spouse, your mistress, your paramour, your cousins, nephews and crazy uncles. The whole dang family. For a suggested donation of $5 -10, pick up at Maaco, Texas Longhorn Steakhouse, the KORA Studios, my son Alex (RG2) and other soon-to-be-announced locations. You may also make a random donation via PayPal on the KORA website. Use according to instructions, only as directed.
7/26/2010
Friday, June 25, 2010
Rip van Roygene
Slowly the fog lifts. My eyes focus. My ears begin to translate strange fuzzy frequencies. My pulse increases, my breathing becomes full. My blood circulates and warms to it’s proper temperature. My hibernation must be coming to a conclusion. I take one tentative step and then another. Pretty soon I am standing upright, erect, though walking wobbly. I hear the cell phone calling me. I pick it up, checking the caller ID before I answer, lest some pesky bill collector wants to ask when I’m gonna send a check (no one believes “soon”, “never” is too blunt, and “as soon as my health improves” just sounds like a dodge, so I’d rather not answer at all). It is safe. It is from a trusted Frambly member. I hit the “talk” button and say “So what’s new?”. Only I don’t exactly say that. That is the message my brain has assembled but as it passes my lips it becomes more liquid and lispy. Kinda like running it through Sylvester the Cat. Thus the results of Chemo #2. Sufferin' Succotash!
I haven't been able to update you as much as I had planned because I haven't been able to stay conscious long enough to operate a keyboard. This extends all the way to last week. About Wednesday (or pretty much smack dab in the middle of Chemo Drip #2 ) I began feeling sick to my stomach and sleepy. By Thursday, if I wasn't throwing up bile, I was asleep. Sometimes the two of them dangerously overlapped. It got to where just the smell of food would cue an expulsion. So, obviously, I didn't eat much for the remainder of my visit.
By Friday everything hurt. I couldn't move, couldn't reach my nightstand table, couldn't eat food. That's when they gave me the morphine (I thought I was gonna get Tylenol. Extra Strength) and everything pretty much disappeared until Saturday.
Charlie Haldeman came to get me on Saturday (you remember Charlie from the KORA afternoon shift several years ago, now a big-time star TV newsguy in Sherman). I rolled in to town, through my front door and after a perfunctory “Hello” and “Adios” I was back asleep, where I have remained far much longer that I expected, at least comparing this time time to my last Chemo bout several weeks ago.
The mouth sores returned on Sunday. They, too, seem to be more plentiful and painful than last time. I have several concoctions I swish in my mouth to numb and heal these, but still my diet has been mostly soup and Glucerna smoothie. Until Thursday, I couldn't even get my mouth open wide enough to get anything in. And then, if I get the slightest touch of salt or spice or sauce, I bounce off the ceiling.
Today, I'm feeling a bit better. I only slept through half the day as opposed to ¾ of the day. I have less sores, though still in critical areas: the tip and top of my tongue and both sides near where the teeth rub up against it (YEEEOWWWCH). If I can return my speaking voice to a non-cartoonish timbre, I hope to be back on the air on Monday. Keep ya posted.
RANDOM RAMBLINGS
I had a to-do list of things I wanted to do whilst under treatment at the Baylor Med Cen. It looks eerily like the list that I prepared tor this week. Mysteriously none of items on either list have been crossed off. Well, there's always the weekend,
I hate when people try to tell me what they dreamed of last night, but this is kinda different. Almost every night at some point I'll be in mid-dream, even mid-sentence, and wake up saying that last thing aloud. I mean, I'll be making some statement in Dreamland and suddenly be beack in the Real World finishing that sentence. Weird. Never had that happen to me before, and now it happens every night. Could it still be the morphine talking?
My apologies to Butch and Nelda, who both inquired to my Howabouts early in the week. I sent a text to Butch telling him I couldn't talk right now. Literally couldn't talk. As in “Unable to speak”. But I know Butch ain't exactly Mr. Gadget when it comes to modern communications and social networking.(No website, no email, no Facebook,etc). He does have a cell phone. I tried to text him a message but I'm not sure if A) it got through or B) he would know how to retrieve it. Anyhow, thanks to you both for the concern.
Sufferin' Succotash!
Tuesday, June 15, 2010
Roy Gene's Bedside Reader
Now in my palatial celebrity hospital room, the furniture and equipment is the opposite. In other words, the drip apparatus is all on the right of the bed, while the insertion hole is on the left. That means the main tube has to drape across my lower abdomen. I mention this because if the hose kinks up anywhere and flow interrupted, an alarm goes off getting progressively louder until it is un-kinked or reset. If it goes too long, it won't reset at all without the help of my RN or Tech. Or, in extreme cases, the guy in the next room tired of the racket.
The reason I'm to remain horizontal through-out this ordeal is because the spot where they drill in to me is right there on the fault line of belly and legs and dang near impossible to keep straight. So every time I make the slightest of move, I have a potential 3-Alarmer ready to launch. Sometimes I can wiggle around and get it all back in order, sometimes I can only make it worse.
Then there's the matter of the bed. It moves all by itself. I don't mean I'll find myself out in the hallway after a long sleep, but it is constantly readjusting to ease pressure points to lessen the possibility of bedsores. Well, you know what happens: The bed moves, my body moves, the hose kinks, the alarm goes off. It's got me scared to move.
There is something good about this bed; it's got a scale built-in. So when they take all my vitals - which they do on an ample, regular basis - I can get the poundage without moving to the scale. My bed-scale shows me to be 24lbs less than the measurement I got in B/CS just two weeks ago. They did a re-weigh to insure the results (despite my protestations). Still the same. I can only conclude I am lighter in Dallas, or gravity is weaker. I need this scale at home. Although, unfortunately, my waistline has not been notified of the change and my "fat pants" are still a bit snug.
When I first arrived in the room Monday morning, I started assembling my command post. From previous experience, I knew I wouldn't get much opportunity to re-arrange, so I tried to get everything within arm's reach. As you can guess, the problem is whenever I reach over to pull something out of the strategically placed nightstand and drawers, I kink the line and sound the alarm.
My room is situated reverse of my last one, so my table-tray has one storage bin that faces away from me, toward the wall. In addition to being difficult to access, it makes the alarm go off. Of course.
I placed the laptop atop the tray (Thanks again, Tom Fussell) but the cord is too short (note to self: Bring extension cord), and when they bring my food tray in, we pull out the hidden surface and the meal ends up between me and the keyboard. Then, whether I eat or not, I gotta wait for the tray to be cleared before I can go back to my online activities. I could try to move it myself, but there's no where close to put it. Besides, it would just set off the alarm.
Well, gotta go. My Night Nurse Caitlin (a good Irish girl) needs to install a new bag of Cancer Elixir. It's number 2. I need a total of 3.5 to complete the set.
Monday, June 14, 2010
Leftovers
As you may know, I'm back in "stir" at the Baylor Med Center in Dallas for ChemoThon 2. I want to tell you a few things about my Latest Adventures in Medicine, but first I wanted to clear out some old stuff. Some gently used information of the past few weeks.
About two weeks after my previous protective custody, I noticed stray hairs on the microphone. I was at work, so it seemed odd. Not that a hairy microphone would not be odd at home, just that I use them more at work. Microphones, that is, not hair. Anyhow, I picked and flicked them and promptly forgot about them. Minutes later, I noticed more stray hairs on the microphone. Using my superior powers of deduction and detection (not to mention "inflection") I came to the conclusion "Something's causing that". I pinched a lock of my own locks between my index finger and thumb and received a clumpful of unattached hair. I repeated the process over and over again to insure the validity of my first test. Then once more just to freak out Brandie Alexander. It was true. I was losing my coiffure (I assume) to Chemo . So, I did the only thing I could think of. I went to Sport Clips and had 'em finish me off. After freaking them out with a couple of tufts I let them harvest, I offered the chance at the easiest haircut they'd do all week. Possibly all month.
I've never taken the chance to listen to the "field" recording we made for the Endless Summer of Chemo Benefit at Revolution downtown Bryan, but I got some pictures:
Maybe I'm just scairt of what we really sounded like, and want to preserve that memory in my mind the way I thought it sounded that night. Big thanks to son Alex Gene for putting it all together and getting me back to play for the first time in years.
The very next week, Kathy Ross headlined another Benefit show along with Leanasaurus Rex at Texas Hall of Fame. Both shows were well-attended and well-donated.
There will be more special occasions my Frambly and co-workers will be organizing in the next few weeks and months. Maybe I'll get another chance to play. I got a small taste of how expensive it is to have liver cancer and a transplant this past week when I was asked for a whole pile of money down and my part of an 80/20 split. Did I mention how grateful I am for your assistance?. I hope I don't wear out my welcome in your generous hearts .
More soon.
Tuesday, June 1, 2010
PO Plenty
Today I've spent hours trying to get a connection (yes, HOURS - I'm nothing if not determined) to no avail. There been more wigglin' and jigglin' than the prime time performers at a Gentleman's Club. And for naught.
So, I give up. I will now go to the other room and sulk. And keep all these good stories to myself. Then I will look for my receipt and demand customer satisfaction from the store of origin. Well, I actually bought it way up in the Piney Woods, but there is a franchise locally and I will be forced to vent on them.
Have a nice day.
Saturday, May 29, 2010
On With The Show! This is IT!
Endless Summer of Chemo Benefit Show
aka Livers Alive!
or White Blood Cells Are For Losers
Tonight Saturday May 29th at Revolution, Downtown Bryan
211 South Main Street, Bryan, TX
7pm: Gates Open
8pm: Frankie "Fresh" Eneks (aka Grandbaby Mama)
8:30/9pm(whenever Frankie is done) First Raflle drawing
9:30 Chad Boyd
10:30 Gene Pool (RGs 1 & 2) with Brandie Alexander
11:00 Second Raffle
11:30 Puente
12:30 Gene Pool Rides Again (Roy Gene & Alex Munse & Friends)
1:00 Magic Girl
2:00 Final Raffle Drawing
Thursday, May 27, 2010
WWWD?
Willie Nelson cuts off his pigtails!
Millions of lives disrupted! Fans fall into mass depression. Chris Austin and Lorrie Lynn analyze at 6 and 10 on KBTX! Swine have no comment.