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?).
