Dying Is Not An Option / Installment -1-
How can I fly when I don’t have wings?
How do I know there’s even such things?
A tiny still voice whispered back while he cried
I guess you won’t know until you have tried
– Excerpt from Caterpillar Had A Dream
Children’s book written by Jaye Bartlett
In September of 2006, I was swinging slowly back and forth on my outdoor patio glider, relishing a cup of coffee and the Arizona morning sunshine, when my life changed in a heartbeat. I was happily gabbing on my cell to my daughter, Carol, when my home phone suddenly rang. I asked Carol to hold on a second when the name of my allergy specialist popped up on the caller ID.
A few weeks before, I’d had an enlarged node removed from the left side of my neck. It had been sent to Stanford University Medical Center to be biopsied. I assumed the doctor’s office was calling to relay the lab results. It never crossed my mind that the results would be anything other than negative for cancer.
Boy was I wrong! On the other end of the phone was Doctor S., the specialist who had surgically removed the node from my neck. I remember my thoughts changed in a flash from . . . my biopsy’s O.K. (ta – da – ta – da) to . . . Oh, oh, I’m Screwed! Specialists don’t personally call their patients anymore.
As soon as I’d heard his voice on the other end of the phone, and he confirmed that he was speaking to Jaye Bartlett, I quickly interrupted him. “Hi, Do you have my biopsy results back yet?”
He was taken aback for a moment. I think he was rendered speechless by my question. I believe that he had a preplanned speech in his head and I’d jumped the gun on him. Stalling is a tactic of mine. My usual interference crap when I sense bad or upsetting news . . . (talk fast and furious before anyone can get to you) . . . kind of thingy I seem to do.
“I hate to be the one to give you the news”, he began again, “but your biopsy report from Stamford indicates you have B-cell leukemia.” He must have heard my sharp intake of sucked air, but he continued, “Jaye, you’ve been diagnosed with chronic lymphocyte leukemia . . . That’s CLL for short.”
My reply was questioning, stunned and simple. “CLL Leukemia. What’s that?”
“It’s a cancer of the white blood cells that begins in the bone marrow,” he replied carefully. “Your biopsy tested positive for B-cell chronic lymphocytic leukemia.”
I responded with my first thought. “Is it curable?”
He replied somewhat painfully, “There’s no cause for CLL and unfortunately, no cure. The good news is CLL’s a slow growing type of cancer and not the aggressive kind, like say . . . acute lymphocytic leukemia, or ALL. (pause) So, you have time.”
“Chronic leposetic whatever leukemia,” I gagged out. (I’d tried to wrap the words around my numbed mind and failed on the lymphocytic part.) “What to hell,” (pathetic sounding now) “I can’t even pronounce it correctly, so I can’t possible die of something I can’t pronounce.” (Sardonic laughter on my end of the phone. Humor works sometimes when I’m chasing away demons.)
“Chronic lymphocytic leukemia, or CLL for short,” he repeated again (emphasizing the lymphocytic part). “Do you have a computer available to you?”
I replied in the affirmative.
“You’ll need to read everything you can find on CLL and become familiar and comfortable with your disease.” (Great advice since I knew absolutely nothing about a deadly cancer with three capital letters assigned to its name.) “Then when you’re ready” . . . (a long pause from him) “you’ll need to see a cancer specialist . . . an oncologist . . . and undergo some more tests and receive an accurate prognosis and treatment plan for your future.”
I don’t remember much about the rest of the conversation with Doctor S. I think I thanked him for his concern and care, but I really don’t remember the exact details after my brain assimilated the diagnosis. I sincerely hope I thanked him. He was the specialist who’d suspected from the get-go I might have lymphoma, and I’m grateful for his patience and astute thoroughness.
In the small fraction of time I’d been on the phone with him, my entire life had tilted, spun out of control and changed. With the diagnosis of chronic lymphocytic leukemia, I’d become another female cancer statistic with a fatal disease. I couldn’t even fathom adjusting my mind and body to a disease that had no cause and no cure. I remember vaguely staring at the phone like I’d just heard a bad joke and wasn’t sure how to respond to the words. How was I going to tell my family and friends?
Then I remembered Carol was on the other phone and had probably heard my side of the conversation. I’d just received a potential death sentence while she’d been nestled tightly in the groove beneath my chin.
“You heard?” I asked her.
“Oh Mom,” she squeaked out, then started sobbing in my ear.
Yep, she’d heard. Damn, what an awful way to hear the news that your Mom had a potentially fatal disease. Yuck! Yuck! Yucky!
I moved in a light fog the first week following my leukemia diagnosis. It seemed to swirl by in a blur of numbness and a surreal reality. (I liken the passing time as quick-small photo snaps of life.)
Within a day of my diagnosis, I had downloaded and read all the information I could find pertaining to B- cell chronic lymphocytic leukemia or CLL. At the end of twenty-four hours, I still didn’t know a whole lot about my disease or an outcome for my future. I knew I was beginning to self-evaluate and I needed to stop! I needed a specialist to complete the necessary testing before jumping to any medical conclusions. The only thing that was registering from the materials I was reading was there were five stages to CLL. Stage 0 to 5. I had my mind wrapped around the absolute worst scenario. I believed I must be at stage 3 or 4 as I’d been symptomatic and had had nodes for at least three years before the actual diagnosis.
I yakked on the phone to family members and friends providing them with web sites I’d found that provided fairly simplistic information about B-cell chronic lymphocytic leukemia. My friend in Connecticut called the Lymphoma Society and they send me a packet of information. Sympathetic and loving e-mails flowed in by the hundreds as family and friends converged on the computer information highway and messages of my leukemia spread outward.
There were a lot of personal bouts of tears and genuine expressions of pain, shock and fear by those closest to me. My husband, Danny was distraught and inconsolable. He never for a moment expected his wife of 43 years to die before him. He is six years older than my fifty-nine years and had always taken the position of noble caretaker and protector. He couldn’t control my cancer or fix it, and it royally pissed him off. He fully expected me to outlive him and never thought about a life without the two of us together. He was devastated and withdrawn. He didn’t know what to say to me other than, “I’m soooo sorry babe,” so . . . he said very little or nothing. The layers of painful onion skins from his soul would peel off slowly in the weeks ahead, revealing his innermost feelings, pain and expression of loss. But for those first few days, he was as numb and withdrawn as I was.
I found out later that he was talking to our kids in those first days, trying to deal with his emotions and fears by gaining comfort and strength from them. Our two boys, Ralph and Gary were great support for their Dad and were able to keep him from losing his cookies when he came home from work at night and faced the numb me. They were encouraging and upbeat. They didn’t feel for a moment that I was going to die anytime in the foreseeable future. Ralph felt sure a cure would be found before I got to the statistical timeline for CLL. Gary just refused to believe his Mom would ever leave him. End of subject! Our daughter, Carol wanted to come home immediately and take care of me. I guess she thought I was in bodily pain, when in reality . . . I wasn’t feeling anything close to pain.
Actually, looking back, I wasn’t feeling much of anything! Following the diagnosis, I had withdrawn into an inner world of frozen time. I felt absolutely adrift. My mind was clouded and fuzzy. The world around me felt surreal. I had removed myself from myself and was looking in a window, spying on a caricature of Jaye! I felt very vulnerable and fragile, and I hated those feelings.
In my mind, my potential life span now had a limited time line attached to it and I was trying to stretch my mind around a thousand little things I needed to do. More than likely, I would never see a great-grandchild grow up and go to college. Our retirement years would be filled with doctor appointments and cancer treatments, instead of the travel we’d planned to do. My mind and body was going to change and I couldn’t do anything about it.
My business projects would have to be accomplished around my health issues. Many of my dreams would have to go by the wayside, as I would have to prioritize the work and time involved in writing children’s books and producing scripts and music for my television productions. My time would have to be subservient to the leukemia invasion that was spreading within my body. Every aspect of my life would have to be adapted and remapped to accommodate my disease. I believe I was in shock, and utterly useless in the giving back comfort or making rational decisions department. I kept repeating the same words over and over again. “It is what it is. I can’t change it. No one’s to blame.”
In the days following my horrific news, prayers of support were circulated on the web for my health and welfare. There was so much positive energy pouring out for me from thousands of caring hearts and souls around the globe. I’m grateful to my family, friends and close business associates who took the time to pray for me. From those prayers, I feel God must have taken notice of my sorry plight and sent a human angel to speak to me.
The one lone person who remained her hyper, hipper self was our 21-year-old granddaughter, Lauren. She lived with us part time while she was preparing for art school in Phoenix. She didn’t miss a beat following the diagnosis, staying busy and preoccupied with her friends and her life. She refused to believe the time line averages for CLL, and remained completely positive. Nothing was going to alter her perception of a positive reality for me . . . by her, or anyone else. She knew I was in denial and kept repeating the same mantra to me over and over . . . “Get over yourself and take control of your life, Grams. Don’t allow a stupid disease to control you or your life. Really . . . now . . . think about it,” she joked. “The really, really good thing about having CLL is you’re not going to live with or die of Alzheimer’s disease or old age. You’d have hated that anyway, Grams!”
She was right of course. I needed to get over my shocked feelings and numbed disassociation and get real again. I guess I was waiting for that normal inborn stubbornness and fight to creep back into my life force.
After a few more days of allowing the pitiful self-diagnosis of my disease to run amuck, my granddaughter jokingly (but firmly) convinced me I knew absolutely nothing about my disease, and that I needed to stop trying to diagnose myself.
Right again, Lauren. I was panicked over the stupid time line thingy and she shamed me into realizing that our first plan of attack was to find an oncologist and get some initial testing done.
A week following my diagnosis my granddaughter, Lauren accompanied me to a local oncologist. Lauren had numerous questions prepared on CLL to ask the doctor, along with pages of highlighted computer data pertaining to the disease. She had read Web M.D. from cover to cover and had done as they suggested . . . prepared me for my first oncology visit. What a sneaky little minx she is. I love her for her balance and stubborn reality, especially when I had nothing to offer but my pity trip.
Anyone who’s diagnosed with any life altering disease needs an available (take no crap) buddy to figure things out with you. Don’t be afraid to ask for a good friend or loved one to be with you the first few weeks following your diagnosis. The mind is a magical place when it hears shocking and potentially dire news. It simply shuts itself down. Sometimes it takes a loved one to pull us back up from the abyss and get our butt in gear again. Lauren was my rock and my let’s go do it person. She got me motivated and moving in the right direction.
More later.ic