Creator: The Nurse Practitioner
Duration: 19:42
The Nurse Practitioner
In this special episode of The Nurse Practitioner Podcast for the Oncology Patient Handouts & Resources, Alicia Taylor discusses life after her husband’s glioblastoma diagnosis.
https://www.youtube.com/watch?v=ijauhhqlfmo
For those of you who know me, I'm a planner, a do-er, a person who just gets things done grief laughs in the face of all of that. You don't make time for it in your schedule, plan days to just dedicate to it- Grief does its own thing. It takes the days or moments that it wants, sometimes a gentle wave that just reminds us that it is there, sometimes a wave that engulfs us, leaving us tumbling in its wake and trying to right ourselves again.
The first year was a blur. I like to say, “keep the lights on”. I did so many things to distract myself and my kids that year. The second year, reality set in for me and I walked around saying in my head “this really happened”. My children surprisingly were still doing OK, so I kept pushing forward. In any other instance, time and distance can make us stronger, can heal the wounds- we hear that all the time. When you lose your center, that stops being true. The reminders of that loss come at strange times and don't always hit the losers in the same way on the same days. On any given day, our squad of four is only as strong as our weakest link, and we have struggled mightily as each one of us has fallen into pockets of loss.
Covid compounded that, stealing the distractions of school, and friends, and the LIFE that can keep us from thinking about the loss of life that still affected us so deeply. Our foundation started to crack. I believe reality truly started setting in for my children.
We are now into our fourth year and we all are deeply feeling the gaping hole in our home in many different ways. I have had to handle things alone that have broken my heart into a million pieces. It may sound odd, but the reality is that we are still grieving into our 4th year. The 3 of us lost our “person”. He made things better when they were hard. He made things fun when we were bored. He made us smarter with all his knowledge. He simply made our lives easier by just being. I was so determined that things would get better each year and it is so much a part of me to attack a "project" and "see it through" that I have been bitterly disappointed. I realize now that the goal I should have set for us is not to live through this, but to continue finding ways for the four of us to live with this. I am as determined as ever to be - daily- what my kids need to grow along with this loss and come out stronger, knowing that grief will always be along for that ride.
GRATITUDE LOVE and KINDNESS! This is what we felt on Sunday and still do!! We saw a community come together to support and encourage others!! There is nothing more we could have asked for!! For some runners it was their first marathon and they did it! This course was not an easier one, but it was created to get in the many landmarks that were so special to me and my family. I witnessed so many amazing people cheering us along the way!! You made an impact on us!! Thank you to the many who cheered, donated, and supported the Win the Day Warriors!
We raised close to $5000!! This money will help local families this holiday season!!
Win the Day Warriors is an organization that gives the gift of kindness to those in need of extra love and support during a difficult life experience.
We thank you from the bottom of our hearts!!
Alicia, Aimee, Karen, and Kelly
Last week Souderton Area High School had their Seniors Awards ceremony. This was the first year that the Win the Day Warriors-Jason Taylor scholarship was awarded. I was honored to talk to the first recipient Maria Deaviz. She is an amazing young woman that has handled adversity but keeps moving forward. In my short time talking with Maria I quickly knew why she was selected for our scholarship. She has overcome some really difficult times in her life (and still continues to), she is an amazing athlete who has she has worked hard for her grades. Her whole class appreciates her and she has even helped mentor other students who need her guidance.
When I hung up the phone I knew it would not be the last time I talked to this young lady. A few hours later she sent me a message that she looked into Win the Day Warriors and said she honored and humbled to receive this scholarship. She also said "Due to Win the Day Warriors, Jason has become apart of my life and I will honor his name and legacy.
The Win the Day Warriors Scholarship (in Memory of Jason Taylor class of 1989) is awarded to a Souderton Area High School senior who processes the following attributes:
· someone who has a positive can-do attitude
· gives back to their community and school
· always willing to help a fellow student
· shows compassion and empathy
· looks at hardships or obstacles as opportunities to grow and learn
Thanks to Souderton Area High School for making this happen and helping my family keep Jason Robert Taylor legacy alive. Maria Deaviz
CONGRATULATIONS Maria Deaviz we wish you MUCH success and happiness
Jason’s baseball number was 22 and today marks 22 months since his passing. It was not until I started my push up challenge that I recognized the day. I always announce the date on my video to Aimee and instead of saying September 26th I said November 26th. I started to cry while I pushed through 55 push ups. I have been pushing through this past year the BEST that I can, but it certainly has been a challenge for me.
Each morning for almost 22 months I open Facebook to look at the memories. 2 years ago today I wrote about reading Adam Grant and Sheryl Sandberg’s Option B with Jason. He replied to my post:
“I like the part in the book about post traumatic growth. It is too easy to feel sorry for oneself or be the victim. It is nice to picture growth from our greatest trials in life, even the very darkest and most challenging. Life is a struggle. We just need to be worthy of that struggle.”
I looked up the definition of Post-traumatic growth this is what I found: helps people find a new sense of personal strength and a new focus on helping others.
It is my journey to focus on helping others through Win the Day Warriors like people like you did for Jason and my children. I am sad today, but that is OK I have a purpose that keeps me moving forward. Make it a great day everyone! #wintheday
I learned a lot in college and on the street, but lucky for me I was stuck on a baseball field early on and it taught me a thing or two about life. Your team includes friend and family and neighbor as well as the extended community called planet earth.
These are the things I learned:
1. Listen and things get better. You have many coaches and their advice is free.
Listen as if it is the most important thing being said in that moment. It just might be.
2. Watch closely the best of the best and be like them when the chance comes…and it will.
3. Watch closely the weakest of the weak, and help them when the chance comes. They need
you.
4. Run out every ball you hit in life… every time… every day… for the rest of your life.
5. Always back up your team mates.
6. Communicate clearly with team mates to avoid major collisions and errors.
7. Hustle. Everyone sees it. It says a lot about you.
8. Play hard. You get more juice when you squeeze a little harder in life.
9. Know when to rest. Rest is needed for the body and soul. It is not a sign of weakness.
10. Don’t yell at team mates. It helps no one.
11. A sacrifice might bring down your average but it helps the team.
12. Be gracious in victory- yes, you will shine but someone else is hanging their head. Don’t rub it in.
13. Be gracious in defeat- if you have played your best, there is nothing for which to hang your head. Sometimes you are beaten that day. Tip your cap, shake hands and move on.
14. You will strike out- It stinks and you might be embarrassed. It is OK to be mad. Try to let it go by the time you get back to the bench (your home).
15. The game of life is unfair. When the calls go against you, try to move on with poise, grace, and humor. Angry outbursts just make you look silly!
16. Love your team. There exists a bond in the shared experience of team mates that cannot be found anywhere else. When you can love and accept the whole team, you can do uncommon things.
17. Remember the words the coaches want you to yell. “I got it!” You have many things coming your way. It helps to remember that, “YOU GOT IT”. When you realize you got it and everything you say and do shows it, you reassure those around you, even you.
18. Swing hard- the ball doesn’t go over the fence any other way. If you want a home run with something you have to take a big mean cut.
19. Practice Practice Practice
20. WIN THE DAY
Well, most of you are sawing wood and that makes me smile to know, but I wanted you to awake to this smile and know that I am so grateful for the gifts of the past week. I get to show the world how truly strong I can be and my children get a front row seat in what a community of love, support, prayers, and care can do to lift a soul. I have not felt sorry for a moment. I have felt nothing but gratitude for all of the moments of the past week. This is not a wake up call and I did not need some perspective-changing life event. But I am too happy to seize this life back and do my best. I cannot thank you all enough. I smile so that you may know: I am not sad. I am defiant. I will read. I will fight. I will dream I will hug. I step out onto an unsure landscape on a journey fraught with uncertainty, but I don't expect (nor do I wish for) certainty. It is MY journey and I will go boldly and happily, warm in the thought that you are with me...that a thousand hearts and arms will swarm in should I falter.. that my family will walk beside me and among you. It is 4:30 a.m., but look at that picture: there is light on my face. Light always shines on me. I will try to let it shine from inside me so you can hear it! When you hear it... if it is too loud just know it is the sound of gratitude and happiness and that you all set off this powder keg when you touched my heart. Have a great day.. Smile, cry, be grateful. Those are three elements in the plan for today (and the rest of my many moments). All my love to all of you.
by Jason Taylor-1/17/2017
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 a type 4 glioblastoma and had surgery at the University of Pennsylvania Hospital days later to remove a tumor the size of a plumb. 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 of the thoughts that can derail life as normal, we do have say and choices and autonomy. With that said, if you are dealing with this personally or alongside someone close to you, I want you to think of the hero in this story. While a villain may have stepped onto to stagecoach to rob the passengers of life or the high quality of life they were previously enjoying, no one has to be held hostage. Passengers on this journey don’t have to be passive. They may have cancer, but it doesn’t have to “have” them. The full grasp of cancer goes as far as one’s minds let it. 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 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.
By Alicia Taylor
The last 3 years have been the most heartbreaking of my entire life. The timeline that began with Jason’s diagnosis makes the woman who stood to hear that news very different from the one who sits here writing this to you. I barely recognize myself, but I do want you to see this version. I went from being a woman with three healthy children and 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. I watched my marriage falling apart and moved from being a mother whose children had never seen her cry to a mom whose breakdowns both scared and scarred them. Thrown into the biggest race of my life-rebuilding our marriage-before Jason lost his race with time and left this world entirely, I heard the words letting us know that the cancer was back and both our races now involved me figuring out a way to tell our children that their father was going to die. With this latest news still a surreal part of our journey, we flew to Chicago so I could run a marathon. It was a race that I would not get to run because Jason had a seizure in our hotel bed. In rapid succession, I went from thinking Jason was dead in our hotel room, managing to keep it together enough to call 911, watching.our hotel room fill with medics and police, and wondering how I would ever tell his mother and our children. Stunned and further transformed, I found myself leaving Chicago with Jason in a wheelchair,telling him he could not drive anymore, and watching him refuse to give up on a job that he loved. The next step was adjusting our lives once again to enable me to drive him to his school, where he was determined to continue making an impact. An hour into the first day of that effort, I was answering a phone call from his principal who was delivering the news that my heart already knew- Jason needed to be home. Another call- to Jason’s mom - because picking him up and bringing him home was beyond what I could manage in this balancing act of actions and emotions that had become my world. Instead, I sat at my office desk, sobbing because my heart was breaking into a million pieces because I knew how much teaching meant to him and I knew the end was near. The realization that Jason’s time was waning, and I watched as our many beautiful friends planned a celebration of life for Jason. The person who stood up and told that room full of people how much this man meant to me was so very changed from the woman I had been mere months earlier.
I watched Jason dance with 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?” and I held his face and looked into his eyes and 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 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 and heard him tell me he could not go. I was the heartbroken mom begging him to go and knowing it was both necessary and impossible to get him there. Crying to his friend to come sit with him, 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. Struggling not to cry in that moment and the moment when, while giving a presentation at work, I looked down to see the home nurse texting to ask where clean bed sheets were because Jason had soiled the bed, became a daily challenge. Maintaining my composure while I was presenting, finishing that job without breaking down, knowing that I was working my last day 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 forgive him before he died, to hear the last time he would say “I love you Alicia Marie”before we went to sleep. Unbelievably, I was now the woman who was setting up our home so my husband could die in a house that we all loved, having him scream at me in frustration because he wanted to go up to our bed, knowing that would never happen again. 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 following 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, helping him shower, 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, worked tirelessly with the hospice nurse to figure out his pain meds so he would be comfortable and-heartbroken- 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 and 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 and told him that night that it was ok to go and that I loved him. 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, 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, planned a funeral, stood up in front of a packed church to eulogize him, 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, 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, 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, and although it was the first time, it would not be the last time I would do that.
This new normal had me helping my children celebrate their father’s birthday 17 days after he had left their lives. I was buying 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 me to live all of these moments and, on the day after what would have been Jason’s 48th birthday, to also take 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 his 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.
