In October of 2005, I was diagnosed with Agnogenic myeloid metaplasic with myelofibrosis Jak 2.
While at an annual appointment with my primary care doctor, he remarked: “It has been a while since we did a CBC (complete blood count).” The lab results showed that my blood counts were out the roof. He ran me through a series of tests, trying to find the infection that my body was fighting. He found nothing. I was referred to a blood specialist (hematologist) at Tennessee Oncology in Nashville. After another series of tests including a nuclear blood test and pulling some bone marrow out of my left hip bone, Dr. Cooper confirmed his original diagnosis of my situation. See paragraph 1.
My condition, producing too many red cells and platelets for some unknown reason, would have to monitored for the rest of my life. Dr. Cooper promised I could live a long, happy life but . . . if I did not have regular blood tests, take an oral chemotherapy and enjoy an occasional phlebotomy (draw off a pint of blood and throw it in the hazardous waste bin) . . . my condition could become very serious. I could throw a blood clot to by lungs, heart or brain and it would take me out in a flash. But, what I heard louder than: “this can be controlled” or “you will live a long and happy life” was the other possibility. Left unmonitored, my mile-long named malady could morph into a blood CANCER!
My younger brother James had died seven years earlier just nine months after his initial diagnosis. Was I going to be the next of Mother’s children to die. I was sitting alone in my dark bedroom soon after, contemplating the future. I asked God, “How could you let this happen to my mother, again?” I wasn’t afraid of dying so much as dreading how much my death would hurt Mother. It is awful hard on mamas to watch their children die.
I was reviewing the last days of James’ life and how he lived and how he died. Could I be as content as he? James was more concerned about the rest of us. On the night prior to his surgery (his 31st birthday), he announced: “Instead of getting birthday presents this year. I have bought one for each of you”. He had been to the bookstore that day and gotten each of us a book to read during the long multi-hour stay in the hospital waiting room. Mine was the autobiography of one of his favorite singer/songwriters: Neil Young. He said: “You like family stories. I think you will really enjoy this.” The last day I saw him, I was leaving Alabama to bring Big Daddy back to Tennessee. (Watching your son die is hard on dads, too.) Dad was unable to say anything to James. James helped: “Don’t worry, Dad. No matter what, I am going to be okay.” James died four days later.
After a while, Mother walked into my dark bedroom and handed me her phone. I put it up to my ear and weakly said: “Hello”. From the other end of the call came the voice of Mother’s best friend from Mobile, Miss Joy, singing:
Be not dismayed whate’er betide, God will take care of you; beneath his wings of love abide, God will take care of you. God will take care of you, through ev’ry day, o’er all the way; He will take care of you. God will take care of you.
Sometimes you need a soft voice singing a reminder of who is in control of your life.
Miss Joy has been crippled by arthritis for as a long as I can remember. Raising six kids and dozens of grandchildren and beyond, she has always impressed me by her outlook on life. She has certainly lived up to her name, Joy, through all of her life’s challenges. She is an inspiration to many. She lives the adages: “Joy is not a season. It is a way of living.” and “Joy is not necessarily the absence of suffering; it is the presence of God.”
Now almost 16 years since being diagnosed, on a new chemo drug and still making bimonthly trips to Nashville to see (now) Dr. Shepherd, I recall the words of Dr. Cooper: “The disease does not control our life. We control the disease. Live your life!” I recall the solid hope of James’ words: “I’m going to be okay.” I sing in my heart Miss Joy’s song: “God will take care of you.”
You are a wonderful writer. I enjoy your stories so much. Love to all your family.
El and El