What do you write about when nothing is happening?
I’m doing fine. No problems. OK. End of story.
I go to Houston next week. Um. Yeah. So?
Tara came from Oregon to visit. Well, that’s a story, but it is not directly related to my health. She does look good though. Her original plan was to come help us get to Houston for the Stem Cell transplant. Not happening. She came anyway.
ABT-199 seems to be working well. I will know how well in March when I am scheduled for both a bone marrow biopsy and another CT scan. That was a short story. More in March.
I suppose one could call this “writer’s block,” since I don’t know what to write. How does a writer handle “writer’s block?” One of my favorite movies stars Sean Connery in Finding Forrester. Forrester is a famous one-book reclusive author. Forrester takes a young writer under his wing to help him improve his writing style. When the young author doesn’t know what to write about, Forrester gives him a piece of his own work and tells him to type (on an old typewriter) until his own words come. The message: when you have writer’s block, write. Write about anything. The important thing is to begin. So, I’m beginning. How am I doing so far?
The problem with CLL, with any disease is that it is a thief. It steals one’s health. It steals one’s wellbeing. It steals friendships. It steals positive emotional strength. I makes no difference if the disease is chronic and long lasting, like leukemia, or acute and of short duration. It is still a thief.
To be honest, I have felt much worse when I suffered from the flu than I have ever felt with CLL. I know: it’s strange. The flu drains the body’s strength like few other acute diseases. It pulls the body down and sometimes releases. In a recent news item, I learned that a pregnant woman was advised by her doctor to NOT get a flu shot. She didn’t. She contracted H1N1 and lost her baby. A short while later she left her husband a widower. The flu is a thief. It drained away two lives.
My dad died with Alzheimer’s disease. Alzheimer’s is a thief. It began by stealing his short term memory. It later stole his sanity. Within hours of placing him in hospice care, it stole his life.
So I have CLL, a potentially fatal disease. I haven’t lost tons of weight. I haven’t been extremely ill requiring long hospitalization. I didn’t even lose my hair until my final rounds of chemotherapy. I have lost untold hours sitting in a recliner watching strong chemicals drip into my veins. I have lost precious time visiting with my friends. I have left a job I love because the risks were too great. I have lost opportunities to take pictures since I have become less active. I have lost the toned body I worked so hard several years ago to achieve.
Am I depressed? No. Am I regretting the losses? Well, maybe. But I will tell you what I have gained. I have gained compassion for those who are suffering at the whim of disease, especially chronic diseases. I have gained a sense of what caregivers go through as they suffer along with their loved ones. I have gained a platform for sharing my story – my writing. I have touched hundreds if not thousands of patients and caregivers through the things I write. I have a greater appreciation for the medical professionals who lovingly and sometimes sacrificially care for the seriously ill.
All-in-all, I have gained much more that I have lost – even if I succumb to the disease. The trick, for me, is to use what I have gained to help better the lives of those in my world, both locally and internationally. I want to spend the rest of my life reaching out, touching, and helping those in need of what I can give because I have and/or survived a potentially fatal disease.