Andy Winnegar

After surviving prostate cancer, Andy Winnegar received a diagnosis of chronic lymphocytic leukemia (CLL) in 2021. Catch up on 

I’m sitting in a reclining chair in the chemo lounge of Christus St. Vincent Regional Cancer Center, in Santa Fe New Mexico waiting for the pharmacy to deliver the Tylenol and Benadryl I need before one of my four scheduled weekly infusions of Rituxan.

For years, my doctors and I assumed that my mild anemia was due to long-distance running. Maybe it was — but this is something new.

My new family doctor, who specializes in geriatrics, prescribed an antiviral medication used to treat shingles. The seven-day regimen left me nauseated and 10 pounds lighter, but the itching persisted. It wasn’t shingles, as confirmed by two dermatologists.

Eventually, an experienced chronic lymphocytic leukemia (CLL) oncologist diagnosed me with CLL — and with it, autoimmune hemolytic anemia (AIHA), a related condition in which the immune system mistakenly destroys red blood cells.

My wife, Judy, accompanies me to the cancer center. The visit begins with an orientation from Joyce, our oncology nurse and educator. Thankfully, Joyce is the parent of a friend of our daughter’s school’s running team, and Paula — another oncology nurse — has a son who played soccer with our son. It’s great comfort to be surrounded by familiar faces.

Still, I’m not well-suited to sitting in the chemo room all day. I struggle with hyperactivity and inattention, which means constant fidgeting, restlessness and difficulty concentrating. I also have degenerative disc disease; sitting too long causes my back to stiffen. So I pace the floor, trying to release pent-up energy without disturbing others. The nurses kindly allow me to wander.

Rituxan works by removing lymphocytes from circulation. It recruits the patient’s own immune cells to attack B-cells. Researchers suggest Rituxan may engage macrophages — a type of white blood cell — to "eat" B-cells through a process called antibody-dependent phagocytosis. It also appears to cause B-cell death through cell lysis.

About 10 minutes after the infusion began, I break into a full-body sweat. I signal Paula and another nurse, and they stop the infusion. I’m given dexamethasone, a steroid commonly paired with Rituxan. The nurses offer a warm towel and washcloth, and I return to normal.

My autoimmune hemolytic anemia may have been lurking for months. For the past weeks, I’ve had relentless nighttime itching that disrupts my sleep. A cold shower offers temporary relief, but it’s maddening. I’ve often been at my wit’s end.

AIHA is a disorder in which the immune system mistakenly targets red blood cells. Instead of protecting the body, the immune system breaks down these cells prematurely.

By late afternoon, everyone is tired. My infusion bag still has a way to go. Paula sits down across from me, rests her head on her hand, and gives me her full attention.

“I remember you were a fast runner,” she says. That simple sentence opens the door. Running has been my primary recreation since I started marathons in my late 50s. Time passes more easily as we talk. She shares plans for an upcoming trip to Big Bend with her husband. I told her how my brother-in-law loved that region and often took solo wilderness hikes there.

Talking with Paula felt like catching up with an old friend. Though we barely know each other, we share a neighborhood and a history through our children. That brief conversation lifted my spirits. It helped me relax — and prepare for the next visit. I will always be grateful for having such a thoughtful oncology nurse.

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Articles

A patient undergoing treatment for chronic lymphocytic leukemia (CLL) and autoimmune hemolytic anemia (AIHA) shares their experience at a cancer center. Initially misdiagnosed, the patient eventually receives Rituxan infusions, which target B-cells through immune system engagement. Despite challenges like hyperactivity and discomfort, the patient finds solace in familiar faces and supportive oncology nurses. The narrative highlights the importance of personal connections and compassionate care in managing the emotional and physical demands of cancer treatment.

During treatment for chronic lymphocytic leukemia and autoimmune anemia, I found relief and encouragement in a caring conversation with my oncology nurse.

Finding Comfort and Connection in the Chemo Lounge

In 2017, at age 67, I completed the Boston Marathon in under four hours. Despite the achievement, I noticed a shift — my recovery times lengthened, and my running pace slowed. This marked the beginning of a new chapter in my fitness journey, one influenced by aging and my diagnosis of chronic lymphocytic leukemia (CLL).

Aging naturally brings about changes in our bodies, including decreased muscle mass, slower recovery, and reduced immune function. When coupled with CLL — a condition characterized by the overproduction of abnormal lymphocytes — these effects can be magnified. CLL often leads to fatigue, anemia, and increased susceptibility to infections, all of which can hinder physical activity and recovery.

Starting treatment at 75 with Brukinsa (zanubrutinib), a second-generation Bruton’s tyrosine kinase (BTK) inhibitor, has been manageable for me, with minimal side effects. However, the combined impact of aging and CLL has undeniably affected my motivation and ability to maintain an active lifestyle.

Despite these challenges, research suggests that tailored strategies can help older adults, including those with CLL, improve their physical resilience:

Adopt an anti-inflammatory diet rich in whole foods, healthy fats, lean proteins, and antioxidant-rich fruits and vegetables.

Ensure adequate protein intake (1 to 1.2 grams per kg of body weight daily) to preserve muscle mass.

Monitor and address deficiencies in vitamin D, B12 and iron, which are common in older adults and can exacerbate fatigue.

2. Engaging in Strength and Mobility Training

Incorporate resistance training two to three times a week to maintain muscle mass and bone strength.

Practice balance exercises, such as tai chi or yoga, to reduce fall risk and enhance coordination.

Engage in regular aerobic activities like walking to support cardiovascular health and combat fatigue.

3. Prioritizing Restorative Sleep and Managing Fatigue

Maintain consistent sleep-wake cycles and limit stimulants to promote quality sleep.

Pace activities and incorporate rest periods to prevent overexertion, which can worsen fatigue.

Stay up to date with vaccinations, including those for pneumonia, shingles and the flu (non-live vaccines).

Discuss the possibility of immunoglobulin replacement therapy with your healthcare provider if you experience frequent infections.

Practice vigilant hygiene and take precautions in crowded places to minimize infection risks.

Address feelings of depression or anxiety, which are common among older adults, especially those managing chronic illnesses like CLL.

Maintain regular social connections — through family, friends, support groups or community activities — to boost both mental well-being and physical resilience.

Engage in meaningful daily routines, hobbies, volunteer work or spiritual practices to provide a sense of purpose and enhance overall quality of life.

Review medications regularly with your healthcare provider or pharmacist to minimize polypharmacy, avoid duplications and reduce the risk of adverse drug interactions.

Engage in advance care planning by discussing future healthcare goals and preferences, helping to maintain personal control and reduce uncertainty or stress for caregivers and loved ones.

While the path back to exercise may differ from earlier years, it's essential to adapt and find new ways to stay active. By focusing on preserving strength, preventing complications, and personalizing care, we can work with our bodies to maintain resilience and functionality.

Aging and chronic lymphocytic leukemia (CLL) can significantly impact physical activity and recovery, as seen in the experience of a 67-year-old marathon runner. The combination of aging and CLL exacerbates fatigue, anemia, and infection susceptibility, affecting motivation and activity levels. Strategies to enhance resilience include optimizing nutrition, engaging in strength and mobility training, prioritizing restorative sleep, supporting the immune system, fostering mental health, and coordinating care. Adapting fitness approaches to accommodate these changes can help maintain resilience and functionality in older adults with CLL.

After running the Boston Marathon at 67, I faced new limits from aging and chronic lymphocytic leukemia — but I’ve found ways to stay strong and resilient.

Rebuilding Resilience: Navigating Aging and Exercise After CLL

After surviving prostate cancer, Andy Winnegar received a diagnosis of chronic lymphocytic leukemia (CLL) in 2021. Catch up on 

I am currently starting treatment with a BTKi, or Bruton’s tyrosine kinase Inhibitor, which represents an important advancement in targeted cancer therapies. These drugs were approved about 10 years ago following extensive clinical trials and have since become a cornerstone in the treatment of chronic lymphocytic leukemia (CLL). BTKis work by blocking a key enzyme, Bruton's tyrosine kinase, which is essential for the signaling pathway that drives the survival and proliferation of malignant B cells. By inhibiting this enzyme, therapy helps control the growth of CLL cells, slowing disease progression.

CLL is a type of cancer that originates in the bone marrow, affecting a specific type of white blood cell called lymphocytes. These cells are crucial for the immune system, helping the body fight infections. In CLL, however, they grow uncontrollably, crowding out healthy blood cells and impairing the body’s ability to fight infections. Despite being a form of leukemia, CLL is characterized by the slow and often indolent progression of these malignant lymphocytes.

As with any medication, BTKis come with their own set of side effects. I have new bruising and moderate night sweats and watch for any new infections. Additionally, in some cases, these drugs may inadvertently trigger autoimmune responses or worsen pre-existing autoimmune conditions, making the management of side effects a delicate balance. Each patient's experience with treatment is unique, requiring ongoing monitoring and adjustments. I have a blood test every week for the next six weeks.

We have a single daffodil outside our front door that blooms each spring. It serves as a poignant reminder of the delicate balance in nature — and, by extension, in life. The daffodil is a hardy flower, but like me, it is vulnerable to extremes. It wilts when the temperature shifts too drastically. Too cold, and it succumbs to the chill; too hot, and it withers in the heat. Much like the fragility of health, the daffodil requires care and understanding to thrive. It reminds me that resilience is not about avoiding change or hardship but about adapting to what is thrown our way.

As spring unfolds in Santa Fe, New Mexico, the weather in the foothills of the Sangre de Cristo Mountains mirrors this dance of resilience. The mountains, named for their reddish hue when covered in snow, stand as a symbol of enduring strength. The Spanish explorer who named them, impressed by their vibrant colors, called them "the blood of Christ" in 1719 — a name that endures as a reminder of nature’s permanence.

Surrounding Santa Fe are the Pueblo communities of Nambe, Pojoaque, San Ildefonso, Ohkay Owingeh, Santa Clara and Tesuque. These communities have a deep spiritual and cultural connection to the land. They have many names for the mountains in their native Tewa language — names rich with history and meaning but not easily translatable into English. Their connection to the land is woven through the centuries, shaping their way of life even as they face new challenges brought by drought.

The landscape here in Santa Fe is stark and beautiful, reflecting both the allure and the challenges of living in a high desert environment. The discomfort of extreme dryness and strong winds is forgotten when viewing the mountains, the blue sky and the dramatic sunrises and sunsets. Many artists have come here to paint, drawn by the brilliance of the colors and the clarity of the light.

The juniper trees are blooming this time of year, and clouds of pollen hang in the air, carried by the wind. It’s an annual reminder that the climate here is shifting in subtle yet powerful ways. Everyone in the community feels it, sneezing and rubbing their itchy eyes. Like many of my older neighbors and friends, I have developed dry eye syndrome, where the body does not produce enough tears. Fortunately, I found an effective eye drop medication that relieves my symptoms.

This year, we are amid a severe drought, with very little snow and no substantial rainfall during the winter months. As a result, fire season is arriving earlier than usual, and the threat of wildfire looms large. Like cancer, we must be on guard, prepared for change, and ready to find safer ground if necessary. That preparation is important, but we must not let it consume us with anxiety or worry.

These incremental changes in the climate create a challenging environment for gardening. Yet, much like the Pueblo people, we have found ways to adapt. The acequia system, a traditional network of community irrigation ditches, has been a key part of Pueblo agriculture for centuries. These ditches are not just physical canals; they represent a community effort to manage water resources collaboratively. The acequia system embodies self-governance and shared responsibility, teaching us that resilience is not only an individual effort but a collective one.

Adapting and Finding Strength in Uncertainty

Our gardening practices reflect similar strategies for resilience. By planting fruit trees closer to the house and growing vegetables in containers, we protect them from the unpredictable spring winds and cold nights. This approach mirrors my own journey with cancer. Just as gardening requires careful planning, adaptation, and resilience in the face of changing seasons, managing cancer demands flexibility and a strategic mindset.

It isn’t easy having cancer. But like gardening in a harsh climate, survival and growth come from strategies, adaptation, and patience. Every change — whether in the weather or the course of treatment — requires a thoughtful response. In this way, both gardening and health teach us the value of resilience: the ability to adapt, to adjust, and to continue growing, no matter the circumstances.

By aligning myself with the resilience observed in nature and the wisdom of the communities around me, I feel empowered to face the challenges of my treatment. Just as the daffodil, the Pueblo people and the acequias have adapted to their environment, we too, will adapt and thrive through this journey. It is our community, and we can do better working together.

Bruton’s tyrosine kinase inhibitors (BTKis) have revolutionized chronic lymphocytic leukemia (CLL) treatment by targeting a crucial enzyme in malignant B cell survival. While effective, these therapies come with side effects, necessitating careful management and monitoring. The narrative draws parallels between personal health challenges and the resilience required in nature and community life, particularly in the context of Santa Fe's climate and cultural heritage. The acequia system exemplifies collective resilience, emphasizing the importance of adaptation and community support in overcoming adversity, whether in health or environmental challenges.

It isn’t easy having cancer. But like gardening in a harsh climate, survival and growth come from strategies, adaptation, and patience.

Managing Cancer Demands With Flexibility and a Strategic Mindset

As I prepare for the inevitable — though not death — I find myself on the brink of beginning treatment for my chronic lymphocytic leukemia (CLL). This transition brings a cascade of emotions: anger, apprehension and deep reflection on my journey with cancer.

I’ve lived with CLL for three years, heeding the CLL Society’s advice to delay treatment. Research supports this approach: starting treatment too early often means needing it again sooner with no measurable benefit. But as my oncologists at the UNM Comprehensive Cancer Center and Christus St. Vincent’s Regional Cancer Center have noted, the time for treatment will likely come in 2025.

The knowledge that treatment carries its own burdens — vulnerability to infections, fatigue, bloating and other side effects — has kept me vigilant and thoughtful about this next step.

Facing Fatigue and the Challenges of Aging

Of all the potential side effects, fatigue worries me the most. Running, even at a slower pace since turning 70 (I am now 75 years old), has been my solace. It clears my mind and quiets my anxieties. However, a recent fall while running left me with broken ribs, which sidelined me temporarily. The thought of treatment threatening this cherished part of my life is hard to bear.

Adding to this challenge is the frustration of aging itself. Time chips away at my endurance and strength, which amplifies my concerns as I approach treatment.

This is not my first brush with cancer. Years ago, I faced prostate cancer, now in remission. CLL, a slow-growing blood cancer, is a chronic condition and unlikely to claim my life. Yet it heightens my susceptibility to other cancers — a persistent, if not looming, threat.

Despite these realities, I remain focused on living. Researching my options and understanding my disease has empowered me to embrace the present. I take joy in my family’s milestones.

My wife stays active with yoga, swimming, biking and we often take walks together. My mother, who will turn 97 years old on January 1, 2025, lives nearby in Santa Fe, New Mexico, keeping close ties to our family. My daughter has two young girls, aged one and three, and my son recently welcomed a baby boy. These bright moments are a constant reminder that life’s beauty persists, even in the face of health challenges.

If there’s one thing cancer has taught me, it’s that while some of us may be predisposed to the disease, we can still take steps to lower our risks. My father, who lived to 100, managed his blood cancer alongside other age-related disabilities. While he followed his doctors’ advice, his lifestyle wasn’t always healthy.

A balanced diet, regular exercise and avoiding environmental pollutants like dirty air and water can significantly reduce cancer risks. Many in my generation grew up unaware of these connections. Smoking, excessive drinking and exposure to toxins were commonplace.

For younger generations, cancer prevention is less about undoing the past and more about making informed choices today. Balancing career, family and health while prioritizing screenings and preventive care can make a lasting difference.

The American Cancer Society recommends that screenings for colon, breast, cervical, skin and prostate cancers begin at age 45. For those with a family history of cancer, early screenings are especially critical. A healthcare provider can help tailor a screening plan to your needs.

Cancer may feel inevitable, but it isn’t. By embracing healthier lifestyles and prioritizing early detection, we can fight back. As I prepare for this next phase of my journey with CLL, I remain hopeful, grateful and committed to living fully — one day at a time.

The author reflects on their journey with chronic lymphocytic leukemia (CLL), emphasizing the emotional and physical challenges of impending treatment. Despite the potential side effects, such as fatigue, and the added burden of aging, they remain focused on living fully. The narrative highlights the importance of lifestyle choices in reducing cancer risk, drawing from personal and familial experiences. The author underscores the significance of early detection and preventive care, advocating for informed health decisions. They remain hopeful and committed to embracing life amidst health challenges.

As I prepare for treatment of my chronic lymphocytic leukemia, I reflect on the challenges of aging and side effects while staying focused on living fully.

Andy Winnegar

Finding Comfort and Connection in the Chemo Lounge

Rebuilding Resilience: Navigating Aging and Exercise After CLL

Managing Cancer Demands With Flexibility and a Strategic Mindset

Preparing for Treatment: A Personal Reflection on Cancer

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