Monday, December 26, 2016

Christmas 2016

Multiple myeloma....I had never heard of it, until the doctor said those words to me in August 1995 after my first bone marrow biopsy. All I heard were the words: primarily seen in Black males over 65, about six months, hospital on Saturday for surgery to install port-a-cath, high-does chemo. No medical insurance. Who would help me?
I was 37 with blue eyes, blonde hair, already lost both breasts, terrified, lost , confused, and alone. 1995 was my seven-year survival from breast cancer, and the abnormally high protein found in my blood, while testing for breast cancer, revealed yet another new story, a new beginning, or the ending of my life.
As I sit here this morning, with tears, my hands on my head and crying in my breakfast after reading this story of Stottlemyre, I don't recall I had any words then, nor do I now, for what my mind was thinking on that Friday morning in August of 1995. More than likely I headed for the closest bar, the VI (Village Inn) on Balboa Island.
Danielle was 12, my court reporting business was more than thriving. I was living on Balboa Island, office on the Island, working at my dream job, owning a business, basking in the sun on the east bay front. After six years in court reporting school, a divorce, child-custody battle, two severe car accidents, and breast cancer, my life was moving forward and happy. Finally !!! I was celebrating seven years of surviving breast cancer ( for two days) --- then that phone call came at 5:00 p.m. to my office that the doctor needed to talk to me now!
I have worked since age 11, full-time in high school to support living on my own, and I loved being a waitress. I survived my childhood, a story in itself. I am worker. I have always loved to work. My dream of being a court reporter came true. I loved my job and I was able to support my daughter as a single mother with zero help from her father. I was never able to get medical insurance after breast cancer, denied by every insurance company, and so grateful for the five generous doctors who treated me for free for those seven years and had chemo donated to me from drug companies! How would I fight multiple myeloma?
I had just lost a good friend, Alan Tilly, to Ewings Sarcoma at age 24 that February, 1995, of bone cancer, not to be confused with my bone marrow cancer, multiple myeloma (or blood cancer)...He was a fighter and how I miss him. If you offered me my past, without cancer, without knowing Alan, I would have to decline. Thank you, Alan, for giving me the fight.
My remission of 23 years has ended, and my new fight has begun.
I have danced this cancer dance for many years and I have plenty of dancing shoes.
The holidays, I know, should be a time of celebrating, so can anyone tell me why they are very difficult for me? Is it emotions? Is it the over-whelming gratitude? Is it the sadness for the too many friends I have lost to cancer and alcohol? Is it the loss of my mother? Is it the loss of my father, who is still living and I just never got to know him?
Celebrating holidays, as I see it, is for normal people, whatever that is, I just know it is not I. Maybe it is all the alcohol involved in these celebrations that makes me uncomfortable? (Yes, that third terminal disease I have, alcoholism). And without being sober, we all know I would not be alive.
I am raw with emotions this morning. If you read the incredible fight of Mel Stottlemyre, you see the word "prayers" many times. So if you don't believe in prayer, then don't ask me why I think I am alive today. If you don't believe in prayer, I hope you don't get offended by my story. If you care to contact my doctors, let me know, they will admit, even non-believing doctors, that their treatment is not why I am alive. The treatment did not work, in my case. Maybe because I was drunk through the entire treatment. My plasma cells were still over 30% cancer after the tandem transplants. Interferon for seven years was a waste of needles in my stomach. Zometa for many years until it broke my femur..who knows? That ended in 2009. Everyone else died, but three of us, Dr. B tells the story. There are three of us that survived similar stories and treatment, as my oncologist recently told me, again. You can say coincidence, if you like, but if you read my prayer journals, I doubt you would. My doctor says he does not know why I survived, maybe luck. We all have our beliefs. But me, I have my gut, my core feelings, my heart, my journals of all these years documenting it all. I know why I am here, do you know why you are here and your purpose?
And if you think it is easy to pour my heart out on my FB, it is not. I am not looking for attention or sympathy. I used to fear what people think of me. It is easy today. They can defriend me if they like my posts.
My wishes for the holidays, and every day, would be that I might share hope, even in a dark time. If you don't have hope, ask for it, it will come. Speak your truth from your heart. Slow down. Journal your life, then go back and read it from time to time. Pray for others before yourself. Figure out why you here and whom you might try to help. Don't judge others, please! We are all doing our best with our story. Your life is YOUR STORY, nobody else's. So don't live another's story, or another's outcome. Make your own! You do not need anyone else to believe in you, only you must do that!
My dear friend, Gregory, tells me to give myself permission to write badly. I am giving it a try. Writing heals me. Writing helps me to breath. Writing turns a frown to a smile. Writing brings me back to what matters, and it is not the turkey, the dishes, or picking up the wrapping paper.
Prayer, gratitude and a 12-step program has gotten me this far. So I won't fix what is not broken.
God bless you, Mel Stottlemyre for your story this morning. You have renewed my hope for the holidays today! Much love to you and your family my MM fighting friend.