Who was I before the CLL diagnosis?

A fierce Scientist/businesswoman. I owned and operated an Environmental, Health and Safety (EHS) consulting firm in Jacksonville, Florida. I would travel to conduct environmental audits – one week in steel toe boots, safety vest, safety glasses, and hard hat. The next week meeting my client – usually Senior Counsel, in my Brooks Brother’s suit and 4” heels. Some projects kept me from my wonderful husband and cats for a month at a time, such as Libby, Montana v. W. R. Grace and September 11, where I was technical lead. I was also Caregiver to my parents and aunt. Meanwhile, I sang in a Cathedral Choir. I never thought much about extending myself so much. I loved my life. It was very fast paced, but I thrived on it.

For years, I knew something was wrong with me medically. I began having trouble with severe fatigue and constant infections. Some days I realized my colleagues (who were not in good physical shape – drinking 4 martinis at night) had zero problem getting to the gate at airports, while I was struggling to get to the gate (not drinking 4 martinis a night). I tried getting answers from my PCP, but he kept saying my 100-hour work weeks were the problem. My WBC counts were up and then down, and constantly anemic, protein levels were wonky. Joints hurt like crazy. Had every test imaginable. Nothing – “You work too much!” Had breast cancer in 2013 and never quite ramped back up to being me. Though I survived breast cancer, I felt a double mastectomy would be the best choice for survival (which now I realize was a great decision).

Then I went to breast clinic one day in 2018 because I felt my radiation oncologist had my back – while my aunt and mother were in hospice care. My radiation oncologist asked how I was doing. Told him I was sick and tired of being so tired. Had lymph nodes growing in my neck and groin. I had really cut back on my work load it was that bad. He looked at me and said I didn’t look quite right – pale and not my usual bubbly self. He ordered a ton of blood work and 2 biopsies Two days after my aunt passed and 3 biopsies later, I received a phone call nobody wants: “Lisa, this is Paulette with Dr. Herrera’s office. You have Non-Hodgkin’s Lymphoma – it is called CLL/SLL – Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma. You will never get rid of it. Don’t you quit. Do you hear me? Don’t you quit! Do you want to go to the 8^th floor oncology group, or the 4^th floor Mayo group?” I was in shock. I couldn’t speak. “Wait. I have what?!” I can’t have cancer; I have a PhD in Environmental Engineering. I own/operate a company. I spend my time helping the environment. What the hell just happened to my life?! I was one of those with the dreaded karyotypes del(17p);TP53, 9q partial deletion, 11q22.3 (ATM deletion), 13q14 deletion, Unmutated (IgVH VH3-33 family), Zap 70+, NOTCH1 and needed treatment upon diagnosis. My Mom passed one week before I began treatment. Meanwhile my husband was acting very strangely – very detached. Usually a very, very caring person, he didn’t think a thing of my diagnosis – let alone provide support. Not even a hug. Little did we know that he would be diagnosed with a benign brain tumor a few months later and fight for his life. I was a Caregiver to a brain tumor patient during and right after finishing first-line cancer treatment for CLL. I closed his law practice while recovering from microscopic colitis from Rituximab infusions.

Who am I now?

A retired person who is in Mayo Clinic Clinical Trial 1784 (Daratumumab and Ibrutinib) who is kicking cancer in heels (not really – too much bone pain for heels), a devoted choir member of St. John’s Cathedral – who sang throughout the pandemic. Most importantly a devoted wife to an incredible husband who survived 2 brain surgeries and gamma knife radiation and a “Mom” to 5 wonderful cats. I took up nature photography to compensate missing my work – photographing/enjoying nature, rather than protecting nature. My life is a very calm life now. No pressures. No work deadlines. I have learned that we all must be our own patient advocates. Physicians are just a person with degrees – they will make mistakes. We must look out for ourselves and utilize the voice God gave us. Do I miss my former life? Yes, but always remember, a lady learns to adjust her sail to the storm and straighten her crown! #CLLWomenStrong #KickingCancerInHeels