This week has been nothing shy of an emotional rollercoaster. In my last post just a few days ago I had a change of heart – I cancelled my chemo appointment and decided I was going to stop treatment. I left work at noon and went straight home rather than going to UPenn. I sat on my bed and cried. I cried and cried. Tuesday night felt like it was never ending.
But the next 48 hours brought me what I like to call, the gift of inspiration. My last post generated some responses and prayers from quite a few people. I don’t think I realized how many people I’ve inspired along the way through this journey. The truth is, it’s all of you who inspire me to keep going.
Tom and Kari Whitehead came into town this week and they took me out to a lovely dinner Wednesday night. We had such an amazing evening at this little boutique-like, Italian restaurant in Center City. The Whitehead’s have been influential and very supportive throughout my CAR T journey as well as survivorship. We talked about a lot of things, including potential treatment options. But we also talked about Tom’s whispers and how he had a vision (he had similar visions when his daughter, Emily was fighting cancer) that I was going to get my T Cell therapy at Penn just two years ago. I think I’ll touch on the whispers in another blog post… and for now, focus on purpose. Sitting across from the Whitehead’s on Wednesday night at dinner, I was reminded of life’s purpose. And although I may not understand what exactly my purpose is, I do know that my purpose had everything to do with where I was and how I was feeling in that exact moment… sitting across from the Whitehead’s at dinner. Not all of you will understand the meaning of this next statement but for those of you who do, you will smile. I want the Whitehead family to know that:
Yesterday, I had a doctor appointment scheduled with my doctor and PI at the University of Pennsylvania to discuss more details about the CART22 trial. I will post updates after I here back from my doctor at Penn.
Not all days are good. No matter how strong we are. We will have bad days. This is so true. The following is a link to the song that inspired me the most throughout this week. Sometimes I feel like giving up, but I just can’t, it isn’t in my blood. Listen to it here:
Things have changed since this morning. After receiving news that my cancer will come back (even if this new CAR T does work), I have decided to put an end to furthering treatment.
Besides having exhausted all of my energy and resources to fighting this cancer, I just cannot endure anymore of the emotional and physical pain associated with fighting and surviving – especially because I know what survivorship offers and truth is, the grass isn’t greener on the other side.
Today I was supposed to go to the hospital for chemo and another spinal tap proceedure, but I decided to cancel all appointments, procedures and chemo regimens. The scary reality and hard truth is that I’m tired of being a lab that. I’ve paid my dues and I just want to rest in peace 🧡
Two weeks ago, I was told my cancer had returned. It was devastating news and has
taken some time to process. For those who know me, know that this will be my eighth attempt to beat this cancer. My battle with leukemia (Acute Lymphoblastic Leukemia) began nearly eight years ago and has consumed most of my energy and resources. Considering this is a journey I am all too familiar with I choose to do something different – something I’ve never done before – I choose to write my way through this next part of this journey
I will post here regularly to provide updates on my treatment and to discuss topics related to cancer therapy. I’m not sure where this will take me, but writing is healing and I want nothing more than to tell the world how HORRIBLE CANCER REALLY IS – and how we (all of those involved with advancements in cell therapy) are trying to make a difference.
When I am in need of inspiration or need a form of release, I will use this blog as my guide.
I would like to end this first blog post by thanking all of my supporters – especially over the past two weeks. For those of you who reached out and sent prayers my way, I could not be more grateful. Stay tuned for my future blog post about the gift of inspiration.
I will post an update on my treatment regimen as I find out more this week. For now, I am home and getting outpatient chemo.