10 Lessons I Learned from 15 Years With Chronic SLL

There have been many ups and downs over the past 15 years of living with small lymphocytic lymphoma (SLL). First, I had to learn about it because on first hearing this diagnosis, I was somewhat paralyzed. Knowledge is power. I tried to ask many questions of the doctors and I read reliable sources to try to understand what my new normal would look like. I dealt with infusion treatments, radiation and Mohs surgeries (procedure to remove visible skin lesions) during this time. Now I take a BTK inhibitor called Calquence (acalabrutinib) every 12 hours, which has allowed me to live a quality life.

Last month, I celebrated 15 years of survival with my chronic lymphoma. I paused to reflect on what I have learned during this time.

1. Knowledge is power: Understanding my diagnosis and treatment options was crucial. Educating myself through reliable sources and asking questions helped me feel more in control and prepared me for the future.
2. Maintain a positive mental attitude (PMA): Finding a supportive and positive doctor who aligned with my outlook was vital. Visualizing a future where I lived alongside my cancer fostered resilience and hope.
3. Healthy diet and exercise: Although I was told that diet didn't cause my SLL, adopting a healthier diet and exercising regularly became even more important. Walking in nature, reducing my sugar intake and increasing my fruit and vegetable consumption helped me maintain my health and weight.
4. Prioritize quality sleep: Getting enough restful sleep was essential for my overall well-being. I adjusted my night owl habits to ensure that I got at least seven hours of sleep each night, which helped me manage stress and also helped maintain my health.
5. Stay on top of all medical appointments: Regular visits to my oncologist, primary care physician, dermatologist and other specialists were essential. Being vigilant about other potential health risks, like skin cancer, was crucial since my Mohs surgeon told me it comes with the territory of chronic lymphocytic leukemia/SLL.
6. Take care of mental health: Integrating practices like prayer, and the mindfulness of my worries and concerns for about 15 minutes into my daily morning routine helped clear my head which gave me a more positive outlook the rest of the day.
7. Don't dwell on cancer: Allocating that specific morning time allowed me to manage anxiety without letting it dominate my life.
8. Keeping detailed medical records: Maintaining an organized record of all medical treatments, tests, surgeries and medications helped me stay informed and prepared for all medical consultations.
9. Accept help from others: Accepting the love and support from family and friends became essential. It strengthened my relationships and provided emotional comfort the emotional support I needed.
10. Find a greater purpose: Engaging in community work or finding a passion outside of my illness provided me a sense of purpose and helped shift focus away from my cancer. It also contributed positively to my mental well-being.

I hope the lessons I learned will help inspire others who are just beginning their journey… and quite a journey it is!

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