Dying Is Not An Option/Installment -8-
On my next trip back to the Mayo, I knew I was going to be receiving my prognosis and potential timeline to complete my circles of living on planet earth. The gene test had been completed and was in the hands of my oncologist. I was nervous, but expected I would fall somewhere in the medium risk level. Considering the extensive cancerous nodes throughout my lymphatic system, I didn’t logically feel I would land in the low risk level. High risk . . . wasn’t even an option in my thought process!
Carol flew over from San Francisco to support me, and she and Lauren drove down to the Mayo in Scottsdale. She felt, and rightly so, that her Dad and I would need some time to talk after the prognosis.
It was a brave, but anxious little family group that walked into the oncologist’s office to await the impending test results. A prognosis that would alter, affect, and change our family forever.
As we were sitting in the office waiting for the doctor to show, I glanced around at the set for whatever news faces of my loved ones. I saw so much of myself reflecting back at me. In that moment, I knew that no matter what happened, I would live on through them and they through me. Whatever the prognosis, we would fight the battle together. Their eyes told me the vast resources of strength they were going to exhibit during the future stages of my treatments. They were resolute and ready. I would be OK. With their help, I could get through this new bump in the road called life. I could depend upon my family to be standing next to me for as long as I needed them to be.
Doctor R. arrived in a flurry of activity, greeting each of my family members with a handshake, and a twinkle of warmth in his eyes. He booted up his computer immediately, and motioned for us to gather around. “First Jaye,” he stated frankly, “you’re in the intermediate risk level. Not low, not high, but medium. Unfortunately though,” he sighed, scrolling slowly down the genetic test read-out. “You have some negative markers that’ll make your ability to recover from leukemia treatments more difficult. In a not so good way,” he smiled sadly, “you’re unique. The FISH panel shows you have an extra 12 chromosome. A trisomy 12.”
When I looked at him with question marks written on my face, he continued “an extra trisomy 12 chromosome . . . put simply . . . it means that every now and then, we find the presence of an extra chromosome in patients with CLL. A triplicate. Your extra chromosome happens to be an addition of the 12th chromosome. CLL patients with such chromosomal abnormalities carry a poorer prognosis than those patients with normal chromosomes. You also have unfavorable findings for the beta-2 macroglobulin and the CD38 positively. Given the profile of all the risk factors, you land in the intermediate range for an overall prognosis. You’ll need to have repeat CAT scans and blood tests every three months so we can monitor the progression of the invading B cells closely.”
“So, what’s the actual or expected time line or prognosis?” Carol blurted out.
“Depends on many related factors,” he nodded seriously. “We have to factor in a multitude of variables- like age, other potential impending illnesses related to CLL, negative therapy reactions, changes in the cancer cells to more aggressive types, as well as other potential changes down the road that could alter and shorten the time line. “But,” he added, “the overall medium prognosis for your mother’s CLL is 6-8 years, give or take a few years one way or the other, due to the variables. Nothing is written in stone,” he added, “those are the averages given your Mom’s multiple risk factors, and her staging level.”
“You have time,” he turned to me . . . “to get that knee replacement done. You’ve got a small window of opportunity here. I think you should take the time and get the knee taken care of. Get it out of the way.”
I agreed. I’d been living with extreme, bone on bone knee pain for ten years. I’d told him on my previous visit that if I could, I wanted to see a Mayo orthopedic specialist and get the right knee replaced. I didn’t want to be dragging my leg around behind me while fighting off leukemia and the ensuing treatments. I didn’t want to be dependent upon a wheelchair to get around. I wanted to walk and feel as independent as possible . . . for as long as possible.
He finalized the appointment by saying he’d begin the process of having one of his orthopedic colleagues make an appointment to see me and begin the process of taking care of my knee. He also warmly invited my family back anytime they wanted to be with me for my future appointments. He sincerely meant it.
First things first, I thought! Get the knee replaced and get rid of the awful pain I’d been living with. I felt I could rationally deal with the impending treatments for my leukemia if I didn’t have to deal with knee pain as well.
I needed my family and friends to find it in their hearts to turn the pages on yesterday and today, and to live life each day with forgiveness and gusto in the future. I figured I could find the acceptance and strength within my spirituality and within the love I felt for my fellow man to live with the leukemia, if my loved ones could remain supportive and optimistic about life in general. Most importantly, I needed them to go about their lives, doing good things, and living their lives to the fullest. Might sound Pollyannish, but it’s the way I view the vast universes of time and space. Good begets good. Negativity begets negativity.
One of my favorite sayings has always been . . .”Make a Memory, Guys.” We needed to continue as a family unit to make lasting memories. I had an important segment of precious time left to me and I wanted it to be without anger or denial. I also had a window of time to take care of the pain in my knee before my blood test spiked, foretelling the need for chemotherapy to chase back the multiplication of the cancerous white B cells. One pain at a time my dear, and one day at a time to fight back. Living life to the fullest is the only option.
More later . . .