Dying is Not An Option Installment -4-
My best friend and business associate from Connecticut is a take no prisoner type of friend. It was Mary Fedus who finally snapped me fully awake by stating the obvious. “I believe in you, but I don’t think you’re ready to take on anything to do with your disease, family, business, or your dreams right now. You need to get your head around the impending prognosis and then get ready to fight back, Jaye. You’re the creative edge and balance that drives Land of I Productions, and your friends and family. You and I both know you have to believe in your dreams to make them happen, and I don’t see that coming from you right now.”
I didn’t get what she was trying to tell me for a few more days. Then one evening, (for no reason other than it was time) the dam suddenly burst. The window of pain broke free and split into a thousand fragments, and I vowed to take back control of my life. I cried a bucket of tears for the losses and battles to come, wailed like a wounded banshee, then, I got madder than hell at my cancer diagnosis.
I found myself writing down a few new rules to follow and live by. (I’ve always written everything I plan to do in the future down.) It’s the act of words on paper that makes my life real. If I can see a plan in black and white, I can accomplish the goal.
First, living to the fullest and believing in my dreams would be my only option for the rest of my life. Period! Second, neither God nor anyone else would ever be blamed for my disease. I vowed never to question a higher entity, genetic inheritance, or the global environment for a stupid disease within my body. Leukemia really was, what it was.
I also wrote down the five personal things I wanted to accomplish with the rest of my life. First, finish the thirteen episodes of my children’s television show for sale and distribution (follow my dream).
Finish my writing projects (all of them).
Philosophically, try to change any of the wrong paths I perceived I’d taken in my life . . . (changing them into rights if possible).
Stay in close communication with those I love. (Say what I mean and express my love, admiration and pride in my family and friends).
And finally, never-ever give in to my disease or allow it to control my life. Dying was not an option. Living was the only option!
I need to insert right here at the beginning of my leukemia diagnosis that it’s very important to find an accurate and simplistic website for CLL patients. My girlfriend, Mary, provided me with a great site. It answered any questions I might have about the strange new words I was reading about. Potential staging, causes of CLL, deletions, gene markers, trisomy 12, various types of gene testing, CLL’s potential connections to other forms of cancers, available treatments, etc. It’s by far, the easiest site to understand and the most informative site that anyone had sent me.
http://cllfaq.acor.org/questions.html.
The site covers 71 potential questions anyone might have about CLL, in a clear, understandable language.
On my first visit, the local oncologist had diagnosed me at stage 1 or 2 and as CLL/SLL. (Chronic lymphocytic leukemia/ Small lymphocytic lymphoma.) CAT scans of my lymphatic system and extensive CBC’s had been ordered and I would find out how invasive the nodes had spread within my lymphatic system and if the nodes had invaded my spleen or other crucial organs.
According to the informative web site I was relying on for information, I had quite a way to go before an actual prognosis or time line for the expected progression of my disease was to be made.
I was beginning to understand that the initial staging or the discovery of my disease wasn’t the whole picture. My overall prognosis would depend upon whether I was a low, intermediate or high-risk CLL patient. The risk factor of low, medium or high would to be determined with a whole slew of genetic tests yet to come.
Other factors like self-determination, genetics, present health and age would also factor into the eventual prognosis.
I’d discovered that low risk CLL holds a (average) median life expectancy of 14+ years. (Some low risk patients with great prognostic markers live 25+ years or more . . . or so I’ve read.) A patient with an intermediate risk factor has an average survival rate of 6-8 years, (depending on the number of negative prognostic indicators) and . . . high risk patients have a medium average survival time-line of 4-6 years (high risk patients have a combination of several negative prognostic indicators and are subjected to the worst case scenarios).
Logically, the overall (average) prognosis or time lines for patients with CLL falls within the 4-14 year range (give or take a few years) due to the various immune system problems that can potentially arise from both the disease and the treatments. If the normal course of treatment (usually chemo) fails to keep the invading cells in check, there’s also the potential of clinical trials, new drugs coming on the market, as well as potential bone marrow or cord infusions to consider at later stages of the disease.
The biopsy slides from Stamford had been sent to the local oncologist and the diagnosis of B cell leukemia was confirmed by him. The staging level of l or ll was reached simply by the obvious presence of enlarged nodes that could be felt with an external exam. (Enlarged nodes presented themselves throughout my entire lymphatic system.) Some of the enlarging nodes had been obvious to me for three years prior to the actual biopsy, and had begun within my neck area. (It was me who discovered my enlarged nodes and insisted on the doctors providing more tests.) Now . . . (it appeared by what I was reading on the website) that I would have to wait for the new blood work and CAT scans of my lympathic system to be completed, return to the local oncologist to have the results read, and then be scheduled for specialized gene testing in order to pinpoint my overall prognosis. In other words, I was still at ‘point one – overall’ for my diagnosis and eventual prognosis. All I really knew for sure was that I had leukemia and the type of cellular disease I had. Other than that, I was in the dark as far as an actual prognosis was concerned . . . and would be for awhile yet. Talk about slow-mo going! I wish I’d known about the actual ‘time line process’ a leukemia patient has to undergo in order to receive a definitive prognosis. If you’re at all like me and want to know your actual prognosis or time line, don’t be impatient. The entire process from initial diagnosis to a pinpointed, “probable and actual prognosis” takes three or four months. In the meantime, be patient and stay positive.
Mary had been right when she stated that I wasn’t ready to fight back yet. It would be difficult for me, (given my aggressive and want to know bottom line personality) to begin a counter offensive without all the information about my prognosis . . . in hand and . . . mind. That’s just me though, and she definitely knows me! I need to know exactly what I’m up against before I can get my head around a plan and fight back.
Like most of the human species, I was in hopes I would luck out with my blood work (they’d be at low levels) and the lymphatic system CAT scans (the results would show low levels of spreading nodes to vital organs) and my gene tests and flow markers would place me in the low risk category overall. Yes!
By now I was taking one day at a time, and had made up my mind that whatever my eventual gene tests revealed, I wouldn’t become caught up in the trauma of a lower life expectency and potential time line. I have come to believe (with knowledge of the disease and the way it works) that anyone with a positive and can-do attitude can extend the average prognosis and time lines of low, medium or a high-risk averages for CLL. It’s up to us as individuals to fight back against the unwelcome invaders, no matter what the risk level may be, and no matter how old or young we might be at the time of diagnosis and eventual prognosis. Positive thinking, great support, keeping busy, and living a fruitful and full life are important for survival and an overall time line for ensuing, productive years. Nothing is written in the stones of life about an actual “set” time line for CLL. Nothing! I had come to realize that dying must not be an option for anyone with a newly diagnosed disease. Living and faith must be the only option!
More later . . .