Monday Morning... It use to signal the start of the work week... now it is the start of when I can contact people by telephone--- to get the dogs groomed, schedule maintenance for the air conditioning, have an alternator replaced in Denise’s car...(so I can get mine back...) and figure out if I am accepted in the Cal 101 phase 2 trial or not...I have an appointment at Moffit later in the week... but I would like to know before, so I can start arranging my life accordingly. If I can do the trial in Tampa, it would not require anything of me...but if I need to go to OSU, I need to start arranging housing, determine how I will get there---fly, drive, etc. and work out all the other minutia that is associated with a temporary relocation. I need to do all that stuff eventually if I am going to transplant... but I would rather wait until the deed is ready to be done...procrastination is an art.

The house is quiet-Denise has taken the grand daughters off- one to day camp, the other to the Zoo where they have season passes- so I am here alone with the dogs- they are Shtz Zus... Insecure Quincy, our 4 year old, and Ming our 16 year old who seems to be emulating Fish from the old “Barney Miller” television programs... Ming is getting pretty frail--- and mostly sleeps these days- but still has some zip...He swats at the bells we have on the front door when he wants to go out... or when he wants us to pick him up...or when he is bored... darn dog... He is getting quite frail... I know that he is on borrowed time.

The weekend went well... I felt rather good on Saturday-I wonder if it is a residual from my IVIG treatment, four hours getting an infusion from the collected “goodness” of 1000 blood donors to boost the immune system. Do you like my medical term “collected goodness?” I figure those of you who do not know what IVIG is can Google IVIG. Some people have challenges going through this infusion...physical discomforts- I never have had any problem with this or any of the chemotherapy... I once asked my Hem Doc- Dr. Lancet- if that was the reason I was not having remission from these agents... He claims there is no correlation to tolerance of the chemo and the effectiveness...but again, they do call it “practicing medicine” they haven’t quite figured it all out yet.

Sunday, Denise and I took a long drive to “explore”... we had lunch in a town called “Howie in the Hills”... no idea where the name came from- but it is a nice community on a lake in central Florida populate by retired “northerners”. We use to do that a lot of wandering in the past... more so when we lived in Vermont to go to the larger communities and “shop” at Home Depot, Lowe’s, BJ’s.... Also when we first moved to Florida- to determine where we wanted to live... Now that we have established roots and live in a rather urban area, we drive to see the sites. Usually lunch is involved- and usually we drive to the gulf, but I wanted to see something different and the rain thunderstorms looks threatening from the west.

Other than that, an uneventful weekend, the hot humid days of Florida really restrict what you can do here...

Geeze, I am sounding like Andy Rooney here... Rambling is one thing! Ming is ringing the bells...

I returned from Byrdland Tuesday...to those of you who do not know- that is my term for the James Cancer Center at Ohio State University- Columbus Ohio... and home of Dr. John Byrd- world renowned CLL specialist...I have been visiting Byrdland for several years now to try and keep my CLL (Chronic Lymphocritic Leukemia) in check. He is without a doubt a trustworthy man who I put all confidence in.

It was great being in the north with the humidity here sometimes as much as 97% (how close to rain can you get without having it???) Denise and I drove up to Cleveland and spent some time in the Metropolitan park there- Rocky River.

Looks like I may be spending some more time up there...

I am once more looking at the BMT train... Dr Byrd has suggested it once more- putting my bladder cancer as a secondary issue... I guess I am running out of viable options... Truth be told, I feel pretty good--- just a bit fatigued lately...

I am approaching the BMT with the same style I have approached everything in my life... moving forward with a watchful eye to determine if He has other plans for me...and willing to make adjustments accordingly- I get in trouble when I try to go my own way...sort of like Jonah.
Dr Byrd has suggested a phase two trial Cal 101 to reduce the lymph nodes... it is a trial that is also being conducted at Moffit- so there is a chance I can do it from Tampa...

I should have more information next week...

Introduction

At the suggestion of John and Sally on the Christian CLL site, I have begun a blog... I guess I had actually started one on the forums... and just hadn’t noticed it... This is a much more viable place to ramble on.

Introduction...a capsulated version- as I will surely address the multifaceted areas of my life in later posts...but this is a start- and doesn't eat up valuable space on the forums...

I am Randy Shannon, 54 years young, married for 29 years to my best friend and cohort, Denise. We live outside Tampa Flrida in Plant City... I am a Christian conservative, currently on disability... paid by my company’s insurance plan now, hopefully soon to be on SS disability... Denise and I adopted two boys (brothers) at a later age (them-not us...) they were 13 and 9... and have three granddaughters... I am originally from Cleveland- moved to Tampa to escape the cold over thirty years ago- met Denise, who was from Vermont and attending USF for her masters in Special Education... We married and then compromised on where we should live...we moved to Vermont. (Denise is getting very tired of that joke...)

I worked in sales and marketing- owning several businesses in Vermont, and eventfully found myself working in the ultimate guy’s candy store--- Hemmings Motor News--- an old car publication that mandated that I attend car shows all over the country-Pebble Beach, Carlisle, Hershey, Goodguys, Hot Rod Power Tour, etc. From there, in 2002, I was recruited as a National Account Manager for Primedia- the publishers of Hot Rod, Car Craft, Motor Trend, Automobile, and a slew of other magazines...Like being called up from the minors to play for the Yankee’s...The only requirement was I had to relocate to Tampa Florida.... After twenty-three years in Vermont, with my wife taking an early retirement from teaching- we returned to the scene of the crime...

Denise’s mother stated “I knew he would take her back to Tampa...” I remain the flatlander who stole her daughter...

Five years ago I was diagnosed with CLL- Chronic Lymphocritic Leukemia...sometimes-called “the good cancer...” (Although that could earn someone a shot in the eye), characterized by an uncontrolled accumulation of large numbers of white blood cells (specifically, B-cells) in your blood, bone marrow, lymph nodes and other organs. It is a unique disease that can lay dormant for years or aggressively get worse and not respond well to treatment... I have the bingo kind that is aggressive. It weakens the immune system, enlarges internal lymph nodes and can cause ailments that are fatal...most people die from “other” illnesses- pneumonia, things like that... It has a lot of similarities to AIDs (in my opinion)... For those that want a better understanding- see http://clltopics.org/Primer.htm Ed Bradley and Tom Snyder are some of the most recent “famous” losses we have had to CLL.

To complicate the matter, I also have a recurrent bladder cancer-but it is superficial type...dare I say- “the good kind. Nope- anything associated with cancer is NEVER appropriate to call good. But, at the moment it is not life threatening...I have had four transurethral resections since August last year... all in all I have had about ten since 1998...so the bladder thing is pretty much no big deal. Usually done as an out patient...

I have tried several times to get into remission with the CLL- but have not... The net of the net is that by all regards, unless I have a Mini Bone Marrow Transplant---I have about two years or so... The challenge is that a MINI MUD BMT is no walk in the park... and there is a good chance I may not survive the procedure... Thus my faith is important... I will follow the path as He dictates... and jump ship if it is not appropriate.

I had attempted a BMT, in the past...In 2007, Denise and I moved to a rented condo in Columbus to prepare for the Mini MUD (Matched Unrelated Donor) BMT at Ohio State University- James Cancer Center. We were under the impression it would only be a three months or so... we were there seven-months knocking down the lymph nodes so I could go to transplant.

During a final examination of all my functions to clear the way, we discovered I had kidney cancer as well. The right kidney. That kicked me off the BMT program. I suspect the kidney thing was a result of the chemotherapy agent Cytoxan I took to knock back the CLL - I liken chemotherapy to throwing a hand grenade into a barn to get rid of the mice.

I called Denise from the hospital to tell her we were going home--- when I got back to the condo the boxes were at the door. I guess she was ready-it was February in Columbus...

We returned and I had the Kidney removed at Moffit here in Tampa (the right one- I marked the spot...)

Now we are looking at the Mini MUD BMT thing again...


I know, I sound like a medical wreak- but I feel very fortunate to have my faith to guide me--- and a twisted sense of humor to rely upon...My faith reminds me that only He knows when I will be called home... But, I need to proceed with all options available... my twisted humor allows me to joke about the situation...

I will try and tie the loose ends together of all this in future postings... but I wanted to get underway...

Thanks again John and Sally for the suggestion-