Tonight I’m writing from my home in the chair Dan used to claim. I’m surrounded by things we bought together and memories we made together. Dan and I spent almost three years together here. People often ask me if I plan to move out of this apartment. Not now, I feel at home here.
In the years of Dan as patient and me as caregiver, we spent many nights outside our home in hospitals, patient housing, and hotels for consults with specialists galore. But as husband and wife, we were able to redefine what it means to be home.
The year 2012 began as a year of hope for Dan and me, but it was also the year we lived in five different “homes”. In January, Dan was on track to finish his three-year chemo regimen, put leukemia behind him, and finish his PhD coursework. Tragically, in March, we were thrown off track. Dan’s leukemia relapsed after two beautiful years in remission. In the following months, Dan underwent multiple rounds of chemo, secondary relapses, a last-ditch chemo protocol, the miraculous remission, and, then finally, his transplant in October. In the year 2012, Dan spent nearly four months in the hospital having treatment and managing complications. We began the year in hopes of finishing it in remission, the emotional culmination of a rigorous regimen that messed up our lives. Instead, we ended the year more than 3,000 miles from our east coast home in a long-term housing complex for cancer patients.
When Dan’s leukemia returned unexpectedly, we learned he was in a high-risk group and that relocating to Seattle, Washington for about six months to have a bone marrow transplant would give us our best prognosis. We spent about a month in Seattle settling in and meeting with specialists when leukemia struck again, taking the transplant off the table. We booked two red-eyes home that night, but we were homeless because we had sublet our Virginia apartment to cover some of the rent while we were away. Graciously, we moved in to my parents’ house in Pennsylvania while we waited for treatment. Dan spent a week in the hospital in DC for chemo and I slept on a friend’s couch on campus. Finally, a negative biopsy was our ticket back to Seattle to start preparation, once again, for the transplant.
Our apartment complex in Seattle housed at least 70 families whose lives were turned upside down in pursuit of a cure, with tragedies like ours, setbacks like ours, and miraculous last-ditch chemo triumphs like ours – at least 70 families redefining their definitions of “home”. We did our best to make our temporary home feel like real home. We packed things like comforting keepsakes, blankets, and photos. We rested our heads on our pillows from home and we checked up on facebook about our friends from home. In those hectic months in so many different beds, Dan was my home.
They say “home is where the heart is” and I couldn’t agree more. Home is where the love is. Dan died in my childhood home. He passed away in the room that was once our piano room, where I practiced for hours on end during my adolescent years. His soul left this earth in the room that at one time was the computer room, where I logged onto my AIM account and flirted with boys in high school. Dan took his last breath in the place our friendship-turned-love blossomed. My husband passed away in what is currently the dining room, where our family gathers every Sunday to say grace to God for our blessings. In one of our last conversations he said “Can you believe I’m dying at home? This is like a dream. There is nowhere I’d rather be.” Dan passed away surrounded by love. A piece of my heart will always be in that Pennsylvania home, in that Seattle home, and in this Virginia home. Dan is here, love is here.
No matter what kind of home you have, tend to the love inside. Make your home a loving place, full of comfort, joy, and hope. A sense of home is a powerful thing. Right now, in Dan’s chair, in our apartment, I feel at home. And there is nowhere I’d rather be.