When It's Not Just Cancer

September is a month that holds special significance for many of us. It’s Blood Cancer Awareness Month, a time to highlight the struggles and triumphs of those affected by blood cancers. For me, this month represents more than just awareness; it’s a reminder of my journey with chronic myelogenous leukemia (CML) and another chronic illness that deeply impacts my life, adult cystic fibrosis (CF).

As a mother who navigated the complexities of cancer treatment while managing another disease, I want to share my story and insights with other moms who might find themselves in a similar situation.

With my mom and my girls, about a year before I was diagnosed with leukemia and adult cystic fibrosis

The Dual Diagnosis

When I was first diagnosed with leukemia in March 2006, I felt my world had been flipped upside down. The whirlwind of doctor appointments, treatments, and the cumulative emotional toll was devastating. Six weeks after my diagnosis, when doctors tried to confirm if I could receive a bone marrow transplant to cure my CML, they discovered instead that I had adult CF. Shockingly, I experienced two chronic, incurable disease diagnoses within six weeks. Yet, as I began to navigate this new reality, I discovered I was not alone. Many survivors, like me, face additional health challenges that complicate their journeys.

In my case, adult cystic fibrosis added another layer of complexity to my life. For instance, the treatments required to preserve my lungs from deteriorating, combined with the medicines I take for CML, create complexity in my daily routine along with fatigue. Studies show that approximately 40% of cancer patients experience fatigue from both cancer and co-existing conditions.

Over the last nineteen years, this dual diagnosis has taught me resilience in ways I never thought possible. I learned to truly listen to my body, to prioritize self-care, and to lean on my support system when I needed it most.

The Importance of Awareness

Blood Cancer Awareness Month is crucial not only for raising funds for research but also for fostering a supportive community. It’s a time to share stories, educate others, and advocate for those who may not have a voice. I have garnered a wealth of valuable health information and found support in groups at a time when I desperately needed it.

As a mom, I often reflected on how my health impacted my children, who were two and six years old when I was diagnosed at 38. I wanted them to see that, even in the face of adversity, we can find strength and hope. I made it a point to involve them in my journey, explaining my conditions in a way they could understand so they could be aware of what I experienced.

By doing this, I hoped to instill in them a sense of empathy and awareness about health issues that affect so many families. It’s not just about blood cancer; many people fight battles we can’t easily see. Research indicates that over 15 million adults in the U.S. are living with chronic health conditions, underscoring the importance of awareness.

Finding Support

One of the most valuable lessons I’ve learned is the necessity of finding support. Whether through local support groups, online communities, or simply confiding in friends and family, having a network of understanding individuals can make all the difference.

I’ve connected with other moms who navigated CML and chronic illnesses. We shared tips on managing fatigue, balancing treatments with family life, and finding moments of joy amidst the chaos. It wasn't always easy.

These connections were a lifeline for me. They reminded me that I’m not alone in this journey, and it’s perfectly okay to ask for help when I needed it.

Self-Care Strategies

As a busy mom, self-care often took a backseat to daily demands. However, I’ve learned that prioritizing my well-being is essential for both my health and my family’s happiness.

Here are some self-care strategies that worked for me:

1. Mindfulness and Meditation: Setting aside just five minutes each day for mindfulness has helped me manage stress effectively. Often, I listen to guided meditations focused on relaxation. Or, I would often take a nap, which was equally effective.

   
   

2. Gentle Exercise: Although I didn't have the energy for intense workouts, gentle activities like walking were beneficial for my physical and mental health. I wore out countless pairs of walking shoes.

   
   

3. Nutrition: Eating a balanced diet was crucial—especially when dealing with multiple health issues. However, preparing these meals had to fit into my family's routine, so I did the best I could. Julia Child, I was not.

   
   

4. Quality Time with Family: This tip was incredibly important to me. I prioritized moments with my kids, whether it was watching a movie together or playing a game. These moments reminded me of what truly mattered.

   
   

5. Setting Boundaries: It’s okay to decline commitments that drain my energy. I’ve learned to prioritize my health and well-being over societal pressures.

   
   

Advocating for Yourself

Navigating the healthcare system can be intimidating, especially when managing multiple diagnoses. I’ve learned the importance of advocating for myself and being my own health advocate.

This means asking questions, seeking second opinions when necessary, and voicing my concerns without fear. It’s essential to have a healthcare team that listens and respects my needs.

As a mom, I want to set a strong example for my children about the significance of standing up for oneself, particularly regarding health matters.

Empowering Resilience

September may be Blood Cancer Awareness Month, but for me, it serves as a reminder of the multifaceted nature of health challenges. Living with leukemia and adult cystic fibrosis has deeply shaped my perspective on life, motherhood, and resilience.

To all the moms facing similar battles of more than one disease, remember you are not alone. Your journey might be tough, but it can be filled with moments of strength and hope.

Remember, it’s okay to ask for help, prioritize self-care, and share your story. We are in this together.