Twas The Night Before The Day Before Christmas

Just Me and The Mouse sitting around talking things over late night/early morning.

I know already I'm not getting exactly what I wanted for Christmas. But I still consider the journey North to have been a success. And, even though the diagnosis, prognosis and treatments are patty much the same as those from MD Anderson and Baylor in Dallas; I got a chance to meet and mingle with an excellent staff at CTCA Mid-Med. All three facilities recommend I commence taking "Nexavar" which I intend to upon my return to Texas.

I had so many memorable experiences and adventures, I hope I can keep them filed in my brain so I can describe them more fully in the coming days.

Right now I'm staying with a member of the Northern Branch of my GENEology, my niece Erin and her husband Wally #1. For Christmas Eve we will gather all available members of the Munse/Murphy clan together under the same roof for the first time in many, many years. It will either be a touching, sentimental photo-op, or A Griswald get-together.

So another opportunity to thank you for everything you've done for me in the last several months. I can't emphasize enough what it has all meant: your notes, letters, phone calls, in-person greetings, donations and-of course- your prayers. Please save a spot for me in them.

I'll write again when I get a chance.

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.

Her advice was, “Whatever you do, don't scratch it!!” This, as you may have guessed, is the medical equivalent of advising a friend NOT to think of Pink Elephants, or getting “Achy Breaky Heart” stuck on “repeat” in your brain ipod. I have become singularly focused on Itching & Scratching. I've added oceans of lotions, potions, and notions to my already-lengthy, steadily-increasing daily prescription list. ARGGHH!

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.

Now, we need to rewind the story a bit:

After my initial run-ins with The Mean Bureaucrat who told me the day before I had finally managed to schedule appointments that I needed to pay $5,000.00 upfront. The first she had mentioned it was the day before. I was unable to pay that amount at the moment and canceled the visit. By the way, no discussion of alternate payment plans or financial assistance was offered or advised. A couple weeks later my Family Doctor, Rusty Bacak, called me in for a fairly routine appointment on other health issues. He had no idea that I had been knocking on MD Anderson's door, he wasn't told of any of my most recent Baylor visits. Nor did he know I'd had Chemo therapy. He wasn't even informed of my liver cancer diagnosis itself. He immediately hooked me up with Dr. Venkatraj and the Hope Cancer Center. She immediately went to work trying to penetrate the MD Anderson Force Field. Luckily she had an “in”, a contact in Onocology, Dr. O.A. Kaseb (no, not Kasey Kaseb who used to do “American Top Forty”, a doctor guy). So I got rescheduled for a Houston Trip and, in the process, discovered I not only did not need to cough up 5K for my first visit, but I had actually already reached the top limit on my out-of-pocket medical expenses for the year. I thought all the Doctors in my vast overreaching Medical Staff, Entourage and Fraternity were being CC'd of all my testing and treatments. Now I know. I'll need to get summaries and hand-delivery copies to all my personnels.

The results of my Kaseb/Venkatraj diagnoses, in the proverbial nutshell:
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.

Now, the whole CTCA process may be all for naught. They may come to the same conclusions as my previous Doctors and send me back home with just few extra holes and a little less fluid in me. But, they are going to fly me and a caregiver to the Mid-Med in Zion, IL, feed and house me for a week all for around $75. Now close and long-time observers of the Roy Gene Life and Career may recall I spent 18 of my formative years in Illinois. A few miles to the south of Zion, actually, in Chicago. I still have two brothers, a sister, and several nieces, nephews, friends and school chums who still live in the South Suburban area. I haven't been back to visit in several years since Mama Gene moved down HERE. So, you can understand the appeal for me.

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?).

Run For Roy

Red White & Blue 5k 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

Registration (click)

TWS Map (click)

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.

The Long and Short of It

I guess it's time for an update. Due to popular demand and my son's insistence. Alex, who gets out a lot more than me, says The Public keeps asking him questions. For some reason he is unable to get away with the same smart-Alec (Smart-Alex?) replies I give (either that, or feels guilty when he does), and would like to know to truth of the situation so he can adjust his comments accordingly. I would have written last weekend, but I was still dazed and confused. I would have written first of the week, but I was stupefied. By mid-week: flabbergasted. Today I'm just plain out of excuses and elucidation.
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.

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

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!

Nope. Not ready yet.

Roy Gene's Bedside Reader

It's a little more difficult to be your intrepid reporter (insipid?) to post stories this time due to logistics, aesthetics and feng shui. When they went to install the liver blasting tube, previously located on the right side of me, they found it was still sore from the last application (I'll say it was!), therefore, the Medical Team put it on the left side, snaking through a spaghetti-like course of veins, arteries and hoses to connect to the liver, where it is to be doused with several bags of poison for the remainder of the week. The Chemo drip is a tiny tube that runs inside the artery. They showed me the last one they had in me when they fished it out after the process, it was about seven or eight inches long. I think this one will be much longer. It feels like about 25 feet worth.
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.