Saturday, June 27, 2009

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-

6 comments:

  1. Hey Randy, great idea on the blog but don't disappear on the site either or continue to email me now and again as I like to hear from my friend and how he is doing!

    Cindy

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  2. I have just added your blog to my favorites. Glad to see you decided to expand your writing-you are quite good. Can't wait to read more. Have a great weekend.

    Trisha

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  3. So glad you took the plunge, Randy. I always love reading what you have to say — you're an excellent writer!

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  4. Glad you entered the Blogosphere also Randy!!I know your blog will be filled with humor,love and uhhhhh food of course!!
    Will be adding it to my favorites as well!

    God Bless,
    Deb
    www.cllcfriends.com

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  5. Thanks Guys for the encouragement... unemcumbered, who knows what I might post...hence the name Ramblings....

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  6. Hi Randy You are a wonderful writer. I'm adding this to my favorites. Love Ya KIM

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