This is the sixth post in a series titled, Today’s Reality. The series will chronicle my journey to remission from Chronic Myeloid Leukemia (CML). My outlook as I begin this new phase in my life and blog series is living in the moment in mind, body, and spirit. I am not angry. I refuse to be sad. I am determined to live a long life with love and peace in my heart with the confidence of a better tomorrow filled with joy and humor.
Each time I have spoken to my 81-year-old narcissistic mother since being diagnosed with CML in this global pandemic of coronavirus has been an exercise of setting realistic expectations of future personal visitations and my progress with CML. She does not use the Internet. She had been reading about CML from a medical dictionary that I can only imagine is about 20 plus years old. I decided to mail to her information that explained CML, leukemia drug therapies, scientific studies on life expectancies. The information I provided to her is in this link from the National Organization of Rare Diseases “NORD” on Chronic Myelogenous Leukemia (https://rarediseases.org/rare-diseases/chronic-myelogenous-leukemia/) with the hope to reassure her that I do not have one foot in the grave.
After my next telephone visit with her, I realized my error in sending her the information.
My mother thanked me for mailing her the information. “It was very helpful.” She went to share with me that she heard recently that her old manager from her last employer had “the same blood cancer” as I have; and she went on to say, “he was a little bit younger than you.”
My mother retired over 20 years ago and while I vaguely remember this gentleman, I do not think he was younger than I am, but I was not going to quibble about it with her. After all, she is 81 years old, wears hearing aids with rarely charged batteries, and tends to piece her information together as she sees fit for her own edification.
“He did not last very long. He died last summer,” she blurted out.
I said calmly, “he probably was in an acute stage, and as the information I sent to you would indicate, he probably was diagnosed beyond the chronic stage. Mom, I am in the chronic stage. I went to state that my goal is to be one of the 90% that is still alive 5 years after diagnosis based on the studies of the my daily drug treatment.”
May I ask a favor?
I know my mother loves me and wishes the best outcome for me. Yet she likes the sympathy that my diagnosis brings her from her circle of family and friends. My cousin and I joke about this because we each have been on the receiving end of her narcissism as we both have been approached by sympathies from others who have received my mother’s notice of our ‘diagnosis.’
My husband was appalled by this conversation with my mother. “Even that story goes beyond on the pale,” he sighed.
Please do not share other patient’s cancer stories with me.
Each cancer patient’s journey is unique. While it is comforting to know other cancer patients are having success with their treatments and have reached longevity milestones, there is always the percentage of those who do not. For clarity sake, I am not being negative, nor do I have a negative outlook – quite the opposite.
I am positively mindful of my own unique reality with CML based on ongoing science with my rare cancer. CML affects 20% of all leukemias and is a rare slow-growing cancer. I am fortunate that even though I may have unknowingly had cancer for 2 years or longer based on my personal symptoms and missed diagnostic opportunities, I am in the chronic stage of this disease.
Let me illustrate my second favor that I ask of you.
A very long-time friend of mine and I catch up with each other weekly. She often prods me for how I am doing physically and usually ends with a statement in some fashion as, “You’re a fighter and I know you will beat this thing.” I know this is her way of believing I needed to be cheered on to victory even when I express to her that I have had a good week.
I appreciate the cheerful response, but please, just don’t.
Friends and family do not know what to say when they hear a person they care about has been diagnosed with cancer. I have heard all types of the responses from what feels like being dismissed with the “thoughts and prayers” to the “my friend died of cancer within 6 months from her cancer diagnosis.”
I understand. I may have said some of the very same things before my own cancer diagnosis. Now I know better.
The best answer you can give is, “I am here whenever you need someone to listen.”
Say it and then leave it. Wait for me to bring it up if I choose to do so.
You may think it rude of me to request you not be cheerful as though I want to wallow in the negativity of my cancer diagnosis, but again, for clarity sake, it is quite the opposite. I do have bad days like this past New Year’s Eve night.
As I worked on New Year’s Eve day fatigue and pain began to firmly grip me. I logged off at 4:30 p.m. And by 7 p.m. I was in bed so exhausted with excruciating pain, I could not even shed a tear. The throbbing of my joints that surrounded the brittle pain of my bones bringing about the panic of being acutely aware of the studies that indicate that approximately 85% of all individuals with CML enter the acute stage.
In my panic, I soothed myself with summer memories of being at Lake Michigan being massaged as I floated in her comforting waters under the bluest sky with the warmth of the sun kissing my face and the breeze tousling my hair. I finally fell asleep to the sound of gentle waves in my dreams of a better tomorrow.
Your antidotal cheers or your sorrow for me only reminds me of my cancer. Cancer has its’ own way of letting me of its presence on those bad days – whispering to me there is no known cure and that I may be one of the unlucky ones.
I am mindful of my reality but I have chosen to be positive. All I ask is that you choose the same by telling my about your day and I will tell you about mine.
Please treat me in our conversations the way you did before you knew I had cancer.
I yearn to be normal again. You can help me with that yearning by just being you. Because we all know my mother will never change and I do not want you to change either. I love you! So allow me to take the burden of cancer off you that cancer has put upon me. You just do you! You know what I mean?
No fear, no tears, God is here!
My oncologist is pleased with my progress after 12 weeks since beginning treatment. Unfortunately, I have a re-infected root canal that will require surgery in the coming weeks, so prayers are appreciated!
The Blogging Owl
This series, Today’s Reality will also offer a spiritual perspective on my website, The Prayer Journals, as well as a literary perspective on my website, The Owl Poet. I hope you will also follow me on those blogs too!
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