Chronic Lymphocytic Leukemia Survivor

Focusing on Adding Life to Her Days

A 30-year career nurse diagnosed with CLL in 2016, Lana has so far not received any active treatment. She’s candid to say that living for today is her utmost priority. Having a type of cancer that currently cannot be cured has made each day precious, unleashed the poet within, and ultimately given Lana the freedom to be her true self.

My motto: Here’s the deal, I want the most out of what I’m allotted. To enjoy the life I live more than live as long as possible. Quality over quantity. That’s my motto.

~ Lana

Friends and acquaintances are stunned to find out I’m living with leukemia, so I rush to assure them I’m not headed off the planet any time soon. Next they usually ask how treatment is going, and that’s when the conversation can get tricky. The truth is, I was diagnosed in 2016 with chronic lymphocytic leukemia (CLL), and to date, I haven’t received active treatment.

Well-meaning people who hear this usually react with disbelief, or they’re completely baffled. And it’s understandable. People diagnosed with most types of cancer are scheduled for surgery or started on radiation or drug therapy as soon as possible. But CLL is different. One of the standard treatment approaches is “watch and wait,” and it involves close monitoring for any disease progression. Since my diagnosis, I’ve seen my oncologist every three months to have blood drawn and to manage my cancer symptoms.

My main symptoms are extreme fatigue and swelling in my lower legs, and the intensity ebbs and flows. The fatigue with CLL is mental as well as physical, and it’s a real struggle that comes up a lot in the online support group I participate in. I describe it as like having to push my body and my thoughts through water instead of through air. Mental sharpness just fades away.

My doctor has discussed treatment, and so far I’m not inclined. But I know I have options available when symptoms get worse. For now, avoiding treatment-related side effects has offered me a better quality of life. I’m a firm believer in quality of life over quantity of life. To me, it’s about the amount of life in your days, not the amount of days in your life, and I’ve always felt that way, not just since having cancer. So I’ve lived in Missouri, England, Idaho, Montana and twice in Hawaii. I’ve worked in many nursing specialties, including hospice care. I’ve indulged my love of travel and singing and art and theater and movies whenever I can.

CLL is a blood cancer, so it doesn’t behave like the cancers people are more familiar with. There’s no tumor to remove or to monitor with imaging scans because the cancer cells are in your bloodstream, traveling through your entire body. CLL is basically cancer of the lymphocytes, which are the white blood cells that help your immune system protect you against infection and disease. CLL gradually weakens your immune system, and that makes you much more susceptible to getting serious infections.

I’ve always been healthy as a horse, so having to accept that my body can no longer fight off disease like it once did is still tough to get my head around. Last winter I was terribly ill with what I figured was a mild case of pneumonia. I travel a lot for work, so by the time I finally saw my doctor, I was told I had triple-lobe pneumonia and should be hospitalized then and there. Seriously, that diagnosis was every bit as shocking as the CLL diagnosis because mentally, I still saw myself as the physically strong, athletic, healthy person I was before cancer.

Having CLL increases my risk for certain other cancers, mainly GI (gastrointestinal), breast and skin cancers. So I’ve had to become vigilant about those, too. I’ve had my second colonoscopy, get a mammogram every year, and see my dermatologist twice a year for full body scans checking for skin cancer. I’ve learned to keep close tabs on how I’m feeling and to be alert to even the smallest changes in my body or my health.

Having CLL hasn’t been all negative. I’ve written poetry off and on since I was a kid. Over the years, I’ve found it to be a great way to express my feelings, particularly during a crisis or when my life has been in turmoil. So being diagnosed with an incurable cancer apparently has my poetry muse working overtime because sometimes poems just flow out of me. I’ve posted a few to my online cancer support group, and it’s been gratifying to hear from others who say they can identify.

Having CLL has provided one notable positive to my life — how much easier it’s made it to live for today. I’ve stopped feeling obligated to do things I no longer want to do, and I’ve stopped putting off things I love to do. If one of my twin goddaughters invites me to fly down for an adventure, I say, “When do we go?” This disease has truly allowed me the freedom to become my authentic self.