I always loved fall. It is such a special time. My birthday is the first day of fall. I love unpacking my favorite boots, lighting pumpkin spice candles, and making warm soups. Fall always signified that special holidays and quality time with family were quickly approaching. These were events to get excited about! But in the last few years, fall has taken on a new meaning for me.
This October will mark the fifth anniversary since my sister, Meghan, passed away. Meghan wasn’t just my sibling, she was also my best friend, trusted confidante, life advisor, and giggle partner. Losing her left a gaping hole in my heart.
Meghan was just 46 years old when she was diagnosed with non-Hodgkin lymphoma (NHL). Learning about her diagnosis was my biggest nightmare becoming real. Our father, Mike, died from NHL in 1997. He too was kind, easy-going, and loving. After he passed, I prayed to never go through that experience again. Yet, here we were again, dealing with another cancer diagnosis in our small family. My family was frightened.
During this time, I did my best to support Meghan. I lived in Texas while she lived in South Carolina. Living halfway across the U.S. meant that I couldn’t be her primary caregiver, but I was determined to still play an important role.
As time progressed, I realized that my knowledge and experience as a pharmaceutical sales trainer gave me an advantage. I was able to put my professional training to work and find ways to advocate for her both when I was visiting and while at home.
I asked healthcare providers effective questions, figured out a way for our family to capture and share key conversations, conducted research using websites I knew were reliable, and more. I also took on the role of her communication coordinator. With my family and Meghan’s permission, I would relieve some of their stress by communicating health updates to our close family and friends. Those who wanted to reach out to Meghan were still encouraged to do so, yet they also knew not to expect a response nor to take offense.
The good news was that Meghan would beat the cancer. By February 2018, she was cancer-free! But to our dismay, no matter what the doctors did, her lung disease intensified. In the end, Meghan died three days shy of her 48th birthday.
Throughout Meghan’s illness, it never occurred to me to reach out to The Leukemia and Lymphoma Society (LLS), but I wish it had. If I had known then what I know now, I would have leveraged their support and resources to be an even stronger patient advocate. I would have rallied family and friends to attend Light The Night (LTN), an LLS event I now cherish attending each year.
Since then, I have decided that my purpose is to teach families like mine how to powerfully advocate for their loved ones. In 2020, I published a book, Badass Advocate: Becoming the Champion Your Seriously Ill Loved One Deserves. By sharing what I've learned, I can help other family caregivers to be Badass Advocates too.
I also speak at events to share Meghan’s story and empower participants. My number one piece of advice is that no caregiver or patient should face this journey alone. If you don’t have a family you can rely on, then get creative by asking people in your community, church, or school to help. Most people want to help but aren’t sure how.
In honor of celebrating Meghan’s life this October, I will share one major lesson I learned during her illness – remember to ask the patient how they are doing emotionally. They are going through one of the most difficult experiences a human can have. Sometimes we get so caught up in fighting the disease that we forget that the patient is also facing a mental and emotional battle. Show them empathy by asking them how they are and listening without judgment or lending advice. If they don’t want to share with you, don’t take it personally, but rather ask them if you can help them find a therapist.