Jason Taylor’s journey with glioblastoma ended on November 26, 2017, leaving behind his wife, Alicia, and their three children: Gavin, Grace and Wyatt. In January 2017, Jason wrote about his diagnosis and the role cancer played in his life.
After his passing, Alicia wrote about her own journey on caring for a loved one with cancer. She details coming to terms with Jason’s diagnosis and moving forward after loss. November 26, 2019 marks two years since his passing, prompting us to reflect on their story. Read Jason's and Alicia's heartfelt words below to learn more about the Taylor family journey.
Who HAS Whom? What Is Your Answer to Cancer?
Written by Jason Taylor, January 17, 2017
“I may have cancer, but cancer doesn’t have me.”
I have a question that only you can answer (and answer you must). Do you have cancer, or does cancer have you? As you reflect, this question does not ignore the serious and threatening nature of cancer, nor the life changing impact it has.
In March of 2016, I was diagnosed with grade 4 glioblastoma. Within days, I had surgery at the Hospital of the University of Pennsylvania, where they removed a tumor the size of a plum. I had many scattered thoughts and, with the passage of time, a longer list of things about which to think.
At some point in this journey, I realized that a serious villain with bad intentions had been introduced into my story and that the good guy had to win. While I am sure it is normal to be devastated by the news or overwhelmed by all the thoughts that can derail life as normal, we do have say and choices and autonomy. I know I decided to keep my wits about me and I found that cancer also came bearing gifts.
I would not wish the experience upon anyone, but haven’t I seen my truest friends? Haven’t I been the recipient of a thousand small kindnesses? Haven’t my wife and children seen the once invisible community come to the fore in a hundred different ways, filling our respective buckets? Empathy and compassion have become woven into daily experiences, and are so much more than just hollow, trite, inspirational words. I have seen legions of warriors who fight, with dignity and courage, for their precious lives and those they hold dear.
So while cancer may be a character in my story, it is not the story. Of the thousands of days I have lived and millions of breaths I have drawn, cancer has just a cameo role in this saga! I am the hero of this romantic comedy! I have been here for over one billion seconds and have crowded so many moments of joy and beauty into them. Cancer’s last gift was the platform it gave for me to share, to help, and to inspire.
So yes, I have cancer. But I still steer my ship. I am the captain of my soul. I still choose to fight every day as I breathe and love and create and coach and teach and parent. I see the brighter future. I bask in the glow of the brighter now. I stand defiantly and marvel at the abundant gifts all around and the staggering beauty of life. I have cancer, but it doesn’t have me.
You must answer the question in your own way. You won’t have to utter a single word to answer the question I posed. Everyone whom you count as family and friends will see your answer. The experience can transform lives and give you opportunities to inspire and connect. Be well. Live well.
Moving Forward After Loss
Written by Alicia Taylor, September 2019
The woman that I am today is very different from who I was when Jason was first diagnosed in 2016, and in the 2 years since he has passed away. I went from being a mother of three healthy children and a wife with a robust, charismatic partner, to making it my full-time job to get the best care for a husband who needed to live as long as possible. Our family and our marriage faced countless challenges, and finding the ability to face all that I was confronted with was overwhelming.
I had to figure out a way to tell our children that their father was going to die. I had to watch Jason realize he would have to leave teaching, a job that he loved. I was in a constant balancing act of actions and emotions that had become my world. Sitting in my office, I sobbed because my heart was breaking into a million pieces— I knew how much teaching meant to him and I knew the end was near.
When the end came, I watched as our many beautiful friends planned a celebration of life for Jason. When I stood up and told that room full of people how much this man meant to me, I was so very changed from the woman I had been mere months earlier.
During that time, I went on my own journey.
I watched Jason dance with our daughter Grace to Aerosmith’s “I Don’t Want to Miss A Thing” because he knew he would never dance with her at her wedding. I videotaped them, my heart physically hurting, so Grace would always have that memory.
I listened to my husband asking me several times, “Why can't they operate again?”. I held his face and looked into his eyes as I told him it was inoperable. Part of this journey was feeling like I failed him as I became a person who had to keep moving, to keep holding things together, to keep being and doing and saying what our children so desperately needed.
I was also a person who could not leave my house without arranging for someone to be with him because he needed constant care. I got him dressed to take him to Grace’s zoo trip, only to find he didn’t have the strength. I desperately tried to find a friend to stay with him, so that I could take our daughter and she wouldn’t miss her chance at hanging with her friends and seeing the animals. I knew how much Grace needed me to be there if he couldn’t be.
Mine were the arms that held Jason up with all my strength at Wyatt’s Halloween party as all eyes watched and noted how terribly changed he was.
Having my last day of work because he needed me was the next terrible turn in this road that none of us wanted to be on. I was the best one to take care of him. I made the changes that put me in position to provide the best care, to share forgiveness, to hear the last time he would say “I love you Alicia Marie,” before we went to sleep.
I was a mom feeling helpless as our boys consoled us, knowing what our tears and the terrible reality of the hospital bed meant for all of us. I was the mom watching my children take turns sleeping in the room next to Jason’s hospital bed, deciding a week before he died to run the Philadelphia Marathon, watching his eyes follow me around the room.
His wave of goodbye signified another change: Jason could barely manage speech anymore.
I’m the woman who heard, on this day, the final words that he would ever speak. He whispered, "You won" when I climbed up on the bed to greet him after my race. I would never hear his beautiful deep voice again.
I was watching a man with such life and love deteriorate in front of my eyes. I helped him eat, bathe, dress, and learn to use a walker. Before we were ready, the walker was replaced by a wheelchair and, eventually, by my own arms as he grew light enough for me to carry.
I hosted a Thanksgiving dinner, knowing he only had days to live because he stopped eating the day before. I worked tirelessly with the hospice nurse to figure out his pain meds so he would be comfortable. Heartbroken, I told my boys that they could no longer sleep in his room because the end was near.
I smiled again and again at the non-stop visitors that were in and out of my house in those final days. I gave hug after hug, delivering comfort in a time when it seemed as though I would never feel it again myself.
Before any of this new normal had ever really had a chance to register, I was lying with him in bed on his last night on earth, singing one of our favorite songs. I changed the words “I LIVED” to "You LIVED" for him. I told him I loved him and that it was ok for him to go.
I am the woman who fell asleep to the sound of my husband’s breathing for one final time, only to be awakened later by the harsh rattling efforts of a person’s final moments. I watched the man who I adored struggle to breathe as I frantically called his mother, his sisters and my brother to be by his side and mine. Unbelievably, I watched this amazing man take his last breath on this earth in front of me as I screamed and cried. I led our children to his side for a final, terrible goodbye, and watched the white hearse with my husband’s body drive away from the house that he loved so deeply.
The woman I had now become sat on the front step of our house and watched the sun rise as I cried alone, listening to the birds. I planned a funeral, stood up in front of a packed church to eulogize Jason, and remained standing as our son Gavin, dressed in his father’s tie, stood to speak about what his father meant to him.
On that day, so many days down this timeline of loss and sadness, I looked out on that congregation in awe, watched grown men weep, and buried a man that I had loved in a grave just down the street from the house where we had shared our life. I sat graveside as the ball players and my son carried Jason’s coffin to his resting place. I listened to the bagpipes play and felt my daughter's hands on my shoulders as they lowered him into the ground. I wept. Days later, I would weep again, lying on his grave. Although it was the first time I did this, it would not be the last.
This new normal had me helping my children celebrate their father’s birthday 17 days after he had left their lives. I bought Christmas presents so my kids could have some sense of normalcy among the many, many grim firsts that would come in that year. Somehow, the person that I had become found it within herself to live all of these moments. On the day after what would have been Jason’s 48th birthday, I took that first step into finding the courage to date again, to open the door to this life, to this person that stood at the end of this relentless, heartbreaking timeline.
This is not the woman you would have encountered ten years ago. This is not even the woman you could have been introduced to five years ago, with Jason’s hand on my shoulder and our children gathered around.
This is, instead, a new person—someone who lived every moment of all of those days and who stands here now, knowing the crushing pain of loss, the life-sustaining energy of the love of friends and family, and the absolute certainty that I need never move on from this man and the amazing experience of his life and our love. Instead, I stand ready to add on to the person that knowing him, building our family, and surviving his loss has created.
Forever grateful for each and every day, past and present, I will move not on, but forward.
You can contact Alicia at firstname.lastname@example.org.