I can remember the day that it began. My sister was a teacher at River Oaks Elementary and I took my brilliant and helpful 2 year-old to help her set up her classroom. That 2 year-old turns 16 this month, so my feeble math tells me that more than 13 years have past since my mom, sister and I sat under the tree at ROE that day and I first heard that there was a problem with my dad’s white blood cell count.
Fast forward through more than a decade of heath care blips, 4 wonderful and determined oncologists, countless bone marrow biopsies, a diagnostic trip to Mayo Clinic in Minnesota, kidney biopsies, 5 types of chemo, bone scans, and thousands of blood tests. If you have ever met my dad, you know that he is one of a kind. I have never met anyone that can combine profound and ridiculous thoughts into one conversation like Frank. Bully, Bully.
Unfortunately, his body and it’s quirky medical gems are equally as novel. After being seen by some of the smartest doctors around, I have learned that you do not want to be medically unique. I think the next person to use the term “unusual” or says “this is first time I’ve seen this” or “you don’t fit the norm” may receive a collective boot up the tailpipe from all 3 of the Bain children. With these words come treatment options, but really these are just educated guesses. They bring about more questions than answers. They bring on head scratching and the common feeling of wheel spinning. I’ll leave out the long names and the complicated challenges and summarize this 14 year adventure with an image. The Texas Cyclone.
If you are over 30 and a native Houstonian, you know exactly what I mean. The Cyclone was a large wooden rollercoaster that proudly took the breath of riders for almost 30 years. Located on the 610 South Loop in Houston, this fear inducer boasted a 80′ drop and packed tears, screeches of terror, laughter, joy and accomplishment into a 2 minute ride. That image completely incapsulates the last decade and a half of trying to get to the bottom of a myeloma protein that has attacked my dad’s body.
Today was a milestone. A new step in the JOURNEY. In December, we faced the reality that the kidneys were not able to be salvaged. The damage was too far reaching. After an unplanned twist in our best intended plan, an emergency forced a new fork in the road. This afternoon, my dad received a port and began kidney dialysis. With the miracle of modern medicine, today is possible. But in many hard ways, today changed our lives forever.
The details are murky, the road ahead is not super clear. But what I can assure you is that once again, I have been brought to my knees by the grace and love of the people in my life. Today, this is particularly true of my parents and siblings. These four humans are extraordinary. I wish it did not take days like today for me to realize the gift in front of me, but I need to stop and set a marker on this date in the JOURNEY.
The strength and laughter and faith and hope and shared fear and love and freaking fight of this family of 5 is something else. As we cooled our heels today waiting (hospitals are a great place if you need some practice in this department), my dad made continual laughter possible. My sister balanced her many plates and one of my favorite moments was looking around the room to see her – in full school administrator professional dress – lying in my dad’s hospital bed. When they took my dad to connect him for the first time to dialysis machine, my brother provided my dad with food and Baylor basketball as a perfect distraction. Oh, and they both kinda like each other, so that helps a little.
And then there is my Mom. Oh, this Diet Coke sucking, Pop Tart eating, hoodie wielding Mimi of strength. She is tough and loves hard and is living before her kids what marriage is all about. She doesn’t leave him. Not physically. Not emotionally. Not even when he would probably enjoy a quiet room. She has spent more nights on hospital sofas than her back should allow. She learns and listens, and best of all approaches each decision with Dad’s desires and best interest at heart. The last 47 years of her life are a living love letter.
As my dad’s kidneys have failed, his body has filled with toxic fluid. Dialysis removes wastes and excess fluid from the body so you can live. As I watched Mom, Dad, Liz and Bo today, I was reminded that they have been a similar filter for me throughout my life. They are my original dialysis unit and they have helped me develop a skill set and team of people in my life that continually point me to a cleaner and more whole way to live. The path has not always been straight. The adventure factor has been high. And for all 42 years of my life, they have been the place where I need to reconnect when things get murky and confusing and full.
Today was a huge day. Today was a hard day. We will never go back. And neither will I. I have been gifted a team, a precious, precious, team of filters. They come in every shape and size. They have spanned my lifetime. They have taught me the best and the hardest lessons. And they have allowed me to live another day with a bit more energy and clarity to face what may come.
So, we buckle up for the next drop or twist or turn in our roller coaster. Together.