The vehicle for my mother’s lease was ending, so the big task for February 12th was to visit the Honda dealer. After several hours of weighing the pros and cons, she purchased her current Civic HR-V. The night had already swallowed the remaining daylight, and we decided to have dinner at the International House of Pancakes (IHOP). After receiving our meal, we sat in the corner booth, and she asked for details about Light Chain Deposition Disease (LCDD). It wasn’t the conversation I thought about having at an IHOP over scrambled eggs, but I provided high-level information about LCDD, testing, and symptoms. “Well, hopefully, they’ll eradicate it from you this year.”
“Mom, I am terminal. It’s unclear when, maybe in 6 months or maybe ten years, but unless some miracle pops on the horizon, LCDD will likely end my life. Doctors hope to keep my body at its current level of dysfunction.”
We arrived back at my mother’s home at 8:32 PM. I was in the process of changing into night attire when another family called. Without my initiation, she inquired, “What is Light Chain Deposition Disease?” For the second time, It wasn’t the conversation I thought about having, but I provided high-level information about LCDD, testing, and symptoms. “Text me the disease name.” I cautioned her about performing research, but she stated that her quick review indicates that LCDD is not a big deal.
And for the second time in one night, I reiterated, “I am terminal. It’s unclear when, maybe in 6 months or maybe ten years, but unless some miracle pops on the horizon, LCDD will likely end my life. Doctors hope to keep my body at its current level of dysfunction.”
Later that night, I was amazed. I said it out loud. I was ‘terminal’ and that nothing was likely to cure my LCDD. The best is life extension. Another thought quickly followed: I am not the only person whose life has been interrupted by cancer. Everyone who learns will face a similar pain. Death comes for us all. And for my mother, she might have to face losing another family member. My father’s death in 2021 was challenging. Then, her beloved dog Skip. Now, there’s a good chance she might outlive me.
The words’ I am terminal’ did not fail. I repeated them intuitively as if God or the Holy Spirit guided me. They poured out from a space in the inner soul, first by grace and second by kindness. I hid these feelings for so long that I no longer felt the need to hint. I confirmed that future-looking dreams of miracle cures would not happen. I intuitively knew it. I intuitively knew I would not live ten years, that my time was short. My sentences were grounded in the now. After several years of planning for death, I somehow felt permission to turn inward and openly admit the prognosis.
Being open is essential. The online and the Artificial Intelligence systems at work produced similar results. Median survival for patients with light chain deposition disease (LCDD) is approximately four years. A major study with a median follow-up of 27 months indicated 57% of patients developed uremia and 59% of patients died. I believe my symptoms have been around for at least two years, dating back to early 2022 at the onset and likely earlier than that. During subsequent conversations with my mother on Tuesday and Wednesday, I repeated that I wasn’t sure I would be able to return to Tucson and that during my MRI, I felt cardiac specialists would either find AL Amyloidosis fibrils or moderate heart failure. Intuitively, I know that post-MRI, I would likely be scheduled for chemotherapy or sent to the cardiac care center for heart treatment.
Finding ways to frame these experiences spiritually can bring comfort and strength. Here are some perspectives I considered.
- Gratitude for Modern Medicine: See the MRI and subsequent treatments as blessings of modern medical advancements. Access to these technologies and treatments is a testament to the progress of science and the care available.
- Opportunity for Healing: View the MRI as a proactive step towards understanding and addressing potential health issues. It’s an opportunity to identify areas of concern and take action to promote healing and well-being.
- Focus on the Present Moment: Instead of worrying about what may come after the MRI, focus on being present, taking each step, and finding peace in the here and now.
- Spiritual Meaning (even in death): See this journey as an opportunity for spiritual growth and introspection. Use the time during and after the MRI for reflection, meditation, and prayer to cultivate inner peace and resilience.