“As a pediatric palliative care nurse practitioner, I journey with patients and their families through the toughest of diagnoses, including disease-related pain and symptoms. I sit with them as they receive good and bad news, including conversations leading up to the last breath.
As I reflect on the work I do, the word embrace takes on a much different meaning. One of the favorite stories my husband Andy and I loved to share, was how we met. I am forever grateful to my mother-in-law, Joanne, not just for her resiliency and strength, but for introducing me to the man of my dreams. Throughout my undergrad I worked as a patient care tech on the same hospital floor as Joanne. She was a nurse and someone I looked up to. I begrudgingly agreed to share my email with her after she thought I would be a good fit for her son, who by the way, she always shared looked like Matt Damon. After a few weeks of emailing over winter break, we agreed to meet in person, once we returned back to school. He walked into my college apartment wearing what we soon would refer to as his ‘white snake jeans,’ brown trucker shirt, and black shiny shoes. Obviously, it was not his wardrobe that won me over, but his calming and reassuring voice.
It was that same voice that asked me to be his girlfriend on February 2, 2005, his fiancé on June 1, 2009, his wife on September 18, 2010, and rejoiced as he shouted, ‘It’s a boy!’ on October 20, 2016. It was his voice I heard as we shared many adventures. Throwing pennies in the Trevy fountain in Italy, drinking wine in California and Guiness in Ireland, eating olives in Greece, ziplining in Costa Rica, hiking Denali trails in Alaska, visiting Ground Zero in New York, dancing at Señor Frogs in Mexico, touching the Golden Toe (he did) in Croatia, skiing in Colorado, proudly wearing our Chicago Blackhawks gear while visiting Boston, and cheers-ing in unique breweries all across the US.
Andy, my strong, funny, fierce, cool, calm and collected husband, was diagnosed with stage 4 colorectal cancer in January of 2017. To say we were in shock is the understatement of the year. ‘How can this be,’ the medical professional in me kept asking? I kept reviewing the timeline of events. He had back pain from golfing 36 holes 3 days in a row in May, but clear x-rays. He pushed through 6 weeks of physical therapy. We escalated to an MRI which showed herniated and bulging discs. We thought we had our answer. He was constipated from the pain meds. The blood in his stool was from his hemorrhoids. In medicine, you could call it the perfect storm of events. It was also just three months after our son Andrew was born, hence the rationale for his fatigue.
I read that 67% of those diagnosed with colorectal cancer saw at least two healthcare providers before being diagnosed. We saw four – one of which was an ER visit due to his debilitating and severe pain. When Andy’s journey began, doctors thought his herniated and bulging discs were the source of his pain. It was not until efforts to treat the discs were unsuccessful, discussions of spinal surgery were being considered and the pain started to increase severely, that he underwent additional testing and re-imaging. This resulted in discovering cancer. Andy immediately began aggressive chemotherapy.
In my professional role, I am passionate about empowering patients and their families to ask for what they need, to think about their goals, and to let them know that hope is always alive. My husband brought that home for me. Despite the severe pain, emergent ostomy placement, infection, and time in the hospital, Andy fought hard to remain the most optimistic, energetic, and passionate person we knew. Prior to his diagnoses, Andy left corporate America to begin his dream job as an assistant brewer at Rock Bottom Brewery and cancer did not stop him!
Andy was not only the eternal optimist, he embodied a character fitting of a hero. In dire circumstances, so many, myself included, may ask the question, ‘why me?’ But right on par with Andy’s essence, he NEVER once posed that question. He actually stated the opposite, that he was thankful it was not one of his brothers instead. He truly encompassed qualities that almost seemed surreal and even in the harshest moments of his dark reality, that is who he stayed. His character was simply strong, wrapped in kindness, it remained impenetrable. The myriad of attributes and an authentic soul are what real superhero’s have in their DNA, and cancer never stole that because it couldn’t. Andy wouldn’t let it. And this is who I get to tell our son his dad was…a superhero.
Andy’s zest for life was contagious to those that knew him. Though he was the sickest in the room most days, he continued to be interested in those around him and empowered them to be the best version of themselves. He inhaled life and exhaled love in everything he did. He taught us what passion looked like for work and everyday life. He instilled kindness in all things even during the hardest days.
Many who knew my beloved husband were privy to the fact that he made a damn good beer. I am re-grounded by his passion for hard work almost daily as I pass by the pop-up craft breweries and see marketing for hopped-out beers. However, I believe his greatest accomplishment was becoming a father. He gave life to one of the coolest kids we have ever met. Though my heart is full of our adventures and traveling together, the daily reminder of Andy is our son, Andrew. He is his finest gift of all.
I am humbled by the strength and grace of the families I see at the hospital. When a child dies, we see loved ones come together, remember their little one, and begin to create a legacy that will live for years to come. My Andy was the definition of strength and grace, and I am grateful to be a part of his legacy.
Andy died September 13, 2017. A mere 8 months after being diagnosed with this horrible disease. A saying Andy used that will forever stay with me was from Bob Marley. It was, ‘Evil never takes a day off. So, how can I?’ He dealt with unimaginable adversity as a true warrior, followed his life passions and goals, and accomplished them with grace. I cannot say I am not lost, confused, angry, and sad. I will say that Andy would want us to harvest good just like he harvested his hops.
I miss his daily Seinfieldisms, unique movie quoting, calm demeanor, protective nature, his reassuring hand on my shoulder, telling me the sun will shine tomorrow. Most of all, I miss his voice.
Never in a million years did I think my career would help guide me through my darkest days. It did not make it better, but I came back to work with a new understanding of what my patients and their families go through. Yet another gift from my Andy.
The loss of Andy taught so many that the brevity of life is all too real. The amount of time our bodies will breathe air on this earth is indeed limited, unknown, and should never be taken for granted. Andy knew that already, he lived and loved that way. Even with Andy’s passing, he is till protecting others. 16 of our closest friends and family members have sought early colorectal screenings and more have scheduled appointments. This early prevention and life saving action, motivated by Andy’s fight, led to 5 out of 16 people having polyps discovered and one person in need of every 3-month monitoring due to the discoveries this early screening provided. Andy is inspiring early prevention for the lives he touched and impacted. This is the type of action that needs to become widespread to shield the loss of the most valuable – ourselves, our children, and the futures to come.
There are so many times in our life we are faced with moments of reflection and situations that cause us to pause. In medicine, this may be that time. Time for a new integration of how and when to act, rather than reflect, on what could have been different for the patient diagnosed with colorectal cancer. Perhaps, pushing out of our comfort zone will spark a needed and different perspective in how we are seeing patients. Often, subtle symptoms cloaked with life’s realities bring about under-diagnoses, particularly in young adults. Resulting in patients being seen by at least two separate doctors before the revelation and devastation of a cancer diagnosis. Recommendations for screenings at age 45 are now suggested – this would not have helped Andy. The ambiguity of symptoms makes the diagnosis difficult, especially in young adults because of, well, plain and simple, their youth. It’s often presumed it would be unlikely in young people, and yet people under the age of 50 are on the rise as are the overall numbers for all colorectal cancer diagnoses.
The numbers are growing, which would indicate we need to place the possibility of this disease even higher on our radar, so as to screen for it even sooner. Sometimes when in pursuit of answers, we need to recognize that our own boundaries are what create roadblocks, rather than develop pathways to early prevention. Let’s knock down those barriers and pave roads that allow people a longer journey through life.
I miss my Andy more than words.”
This story was submitted to Love What Matters by Meggan Mikal of Mokena, Illinois. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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