When we were in our 20s, our father, Mike, was diagnosed with non-Hodgkin lymphoma. My family was shocked. He was 53 and full of life. Our dad was the light of our household – goofy, laid-back, and full of cheesy jokes.
He was the kind of guy who lit up a room the moment he entered it and made everyone feel like they were his best friend. He was non-judgmental and had a kind soul. He simply made life fun.
At the time of his diagnosis, I was a junior at the University of North Carolina Chapel Hill. Living far away was both a blessing and a curse.
The curse was that I was not able to spend any time with my ailing dad; time I would spend the rest of my life yearning to get back. The blessing was that I wasn’t expected to be a caregiver at the young age of 20. I was able to live the life of any average college student.
But life was far from normal. While most of my friends seemed to be living carefree lives, I was trying to bury my stress, worry, and sadness.
The first time I came home for a holiday weekend after my dad’s diagnosis, I was shocked by his appearance. He had drastically transformed from a plump, jovial 53-year-old man to a frail, melancholy patient. The dad I knew that was full of laughter and warm hugs was gone. I was heartbroken. What I had been in denial about while I was gone I could no longer ignore. Life just slapped me into a new reality.
Over a ten-month period, my father would continue to lose his hair, weight, and energy. His health was quickly declining. Then, on June 24th, 1997, he passed away in his hospital room. Thankfully, we were all present. My dad was surrounded by his little family whom he did everything for in life. We were able to say goodbye to the man who taught us that life shouldn’t be taken too seriously, learning to tell a joke well is a valuable skill, and being kind to others is most important. Our family unit would never be the same.
Meghan
When I was born my sister, Meghan, was six years old. From the day I entered the world, she acted as my protector, my advice-giver, my giggle partner, and my other “unofficial” mom. As we grew into adulthood, we became close friends. Best friends in fact. We confided in one another, shared our darkest secrets, giggled over boys, and cried on one another’s shoulders when life threw us curveballs.
When our dad died, she was worried about me. Can you imagine? She had her own grief to deal with, yet she made sure I was going to be okay. It was official, I was born with the world’s best sister.
Twenty years after my dad passed, my family would once again receive devastating health news. Very unexpectedly, Meghan suddenly started having issues breathing. She immediately went to the ER and was diagnosed with non-Hodgkin Lymphoma. You read that right. Meghan was diagnosed with the same cancer our father had. This was a very unfortunate coincidence.
But the cancer diagnosis did not explain the breathing issues. After another night in the hospital and several more rounds of tests, the doctors found that Meghan also had a very rare and aggressive lung disease called Bronchiolitis Obliterans. We were floored. As a former Division 1 athlete, Meghan had never even smoked a cigarette in her life. Not one. Not even to just try it.
Once again, my family was frightened and disheartened. Certainly, this could not happen to us twice, right?
Eventually, the doctors would explain that Meghan probably had had cancer for about a year but never showed any signs of illness. Cancer had then caused an autoimmune disease, which had then caused the lung disease. We soon discovered that the cancer was the least of our worries. Meghan’s lung disease was the real issue. It was aggressive and rare which meant it would progress quickly, but doctors had little knowledge of how to stop it.
Unlike when my father was sick, I was determined to play a role in supporting my sister during her health battle. Years of guilt and grief taught me that being a part of a loved one’s health journey was critical. Denial doesn’t benefit anyone.
I would not take a backseat in supporting Meghan and pretend it wasn’t happening. This I knew for sure. My sister needed me, and I wanted to be there for her every step of the way. Even distance wasn’t going to stop me this time.
While Meghan was going through treatments, I would travel back and forth between my state and hers. I couldn’t be there every day, but I did find plenty of ways to support her and our family from afar. My only focus was to ensure she was receiving the best care possible so her story would end differently than my dad’s.
Patient Advocacy
While I was supporting Meghan, I realized that my knowledge and experience of being in the pharmaceutical industry for 20+ years gave me a different perspective than most family members who care for a sick loved one. I put my professional training to work and started to strategically advocate for her. I did this by asking healthcare providers effective questions, figuring out a way to capture key conversations, conducting research about her diseases and treatment options using websites I knew were reliable, and more. I was determined to be the most influential advocate I could be for the world’s best sister. I would not let her down.
To our dismay, the next 13 months were painful and heartbreaking as we witnessed Meghan’s condition worsen. No matter what the doctors did, the lung disease intensified. We did make sure that she got the best care possible, but even the best care was not going to stop Meghan from dying. The lung disease was too strong and too destructive.
In the end, Meghan died in October of 2018, just three days shy of her 48th birthday. Once again, my family was devastated. We lost another irreplaceable member of our tribe who brought light, love, and kindness to our everyday lives. How would we move forward?
After losing Meghan, I went into a dark place. Life seemed hopeless and pointless. We wouldn’t watch our kids grow up together. No more “girls’ weekend trips” to wine country. I wouldn’t be spending my golden years hanging out with my best friend laughing about our youth. Once again, I felt robbed of a future I imagined.
That is when I decided that my purpose would be to help others to powerfully advocate for their sick loved ones so they can learn from my experiences.
The people I love kept dying on me. What about my other family members? Was my turn next? Fear can do funny things to the brain. Grief can do disturbing things to the heart.
Upon lots of reflection, I knew that my state of mind was the last thing my dad or my sister would want for me or my family. I had to find a way to honor both of them and ensure their deaths weren’t in vain. That is when I decided that my purpose would be to help others to powerfully advocate for their sick loved ones so they can learn from my experiences.
In 2020, I published my first book, Badass Advocate: Becoming The Champion Your Seriously Ill Loved One Deserves. By sharing my story and lessons, I have helped many family members and friends to be Badass Advocates for their loved ones. If you currently are connected to or caring for someone who has a serious illness you too can be a Badass Advocate for them.
The strategies I share are simple yet effective. They also aren’t just for patients who are terminal. These strategies can be used for anyone battling a disease whether it be short-lived or long-term, terminal or curable. I have a website where you can find lots of resources I personally used as well as ones I wish I knew about when my sister was sick. Organizations like the Lymphoma Research Foundation are a great place to turn when looking for knowledge and support, whether you’re a patient, a survivor, or a caregiver.
If you love someone who is terminally ill, their ending may not be what you desperately are hoping for, but that doesn’t mean you can’t make a difference in their care. The goal of an advocate is to ensure the patient is getting the best care possible. This can mean the best medical care, the best mental health care, the best comfort care, and so on. Even if most of us do not like to face this reality, it is true that our lives are finite. If someone’s life is ending because of an illness, wouldn’t you want their journey to be the best, most peaceful experience possible?
Having a serious illness is an emotional toll on everyone involved. Remember to do your best to take time for yourself.
My goal is to show you how to do that so that no matter what the prognosis is, you can rest knowing that your loved one received the best care possible and that you played an integral part in ensuring that happens.
Lastly, I wish you and your loved one the best of luck. Having a serious illness is an emotional toll on everyone involved. Remember to do your best to take time for yourself. Meditate, pray, exercise – whatever is your thing, and use it to your advantage so you can get the mental breaks that are necessary.
