Kylie:
Hi. I'm Kylie, and I want to invite you on my journey of living with courage, love, and legacy. I was diagnosed with CLL 18 months ago, when I was 40 years old, I was just about to turn 41. And at the time, my children, I've got three young boys, my youngest had only just turned five, my middle son was 10, and my eldest son was 12. And I tell you, it's been a journey. In 18 months, I was diagnosed, I've been through watch and wait, and a couple of months ago I started on a clinical trial of VENCLEXTA® (venetoclax) and GAZYVA® (obinutuzumab).
Early on, I decided it was going to be important to reframe my diagnosis to something that I could learn to live with and that I could live for. And so I chose to rename it and rebrand it, reframe it into CLL, meaning living with courage, love, and legacy. And that's what I've chosen to make these last 18 months about and what I choose to make the rest of my life about. So I would love for you to join me on this treatment journey. I'll go back and share some stories about diagnosis, and watch and wait, and the pretrial stuff. And then walk with me as I go through treatment, as I go through infusions, as I take VENCLEXTA® (venetoclax), what I discover along the way, what life looks like in treatment. Let's do this together.
I think any cancer diagnosis can feel lonely and isolating, initially. And it's when we are able to get vulnerable, share heart-to-heart, share what's going on for us, the ups and the downs. And I promise in these vlogs, I will be vulnerable, I will be open, I will be authentic and transparent because I think that's how we find hope. And that we are not alone and forging this by ourselves, but we walk together, even when we're across the world. My accent, by the way, for those of you who are in America watching, is a Kiwi accent. I'm from New Zealand, I live in a beautiful place called the Bay of Plenty. And from my house, even from where I'm sitting right now, I have this gorgeous sea view out across the Pacific Ocean.
Deciding to live with courage, love, and legacy, rather than chronic lymphocytic leukemia, happened when I was in my room. I had COVID, and we all remember those days. I think it was not even maybe four weeks after I was diagnosed, and I was feeling completely miserable, trapped in my room, unable to connect with my family, dealing with COVID and a cancer diagnosis. I went on a big scout for people that shared similar stories to me, or similar circumstances to me, that were young, that had kids, what their diagnosis is and what their journey with cancer looked like. And although on Facebook you find people saying, "Well, I was the same age as you and had the same amount of kids or close, and I'm still here." And that's really reassuring and great, and I love that. That filled my tank an awful lot when I needed it.
But what I found myself yearning for was a way to travel with people and understand what it looked like and what I could learn from their moments of difficulty and their moments of triumph. And I couldn't find anything like that. The most I found was on Patient Power, some great personal stories that went a little deeper and shared a little more heart, and I loved that. So while locked in my room, having COVID, I got busy, and I started designing a website and putting my story up there. I needed a way to frame my cancer in a way that could be positive, could be energizing, could be inspiring and motivational, rather than being what I felt like at the time was a death sentence.
And so here I am, 18 months after diagnosis, starting treatment, which is very early for a CLL diagnosis. I have a variety of CLL that seems to have skyrocketing white blood cell counts. I went from 50,000 at diagnosis to 360,000 by the time I started treatment. So they really ramped up very quickly, and it took a lot to get through. Every time I had a doctor's appointment, every time I had a blood test, seeing them climbing and climbing and climbing and climbing, and realizing how unusual that was, and that's taken its toll, that's been hard. That's been real tough.
Anyway, let me walk you through this time, some memories that I have of the entire process. And then I would love for you to join me on other vlogs as we discuss treatment, as we discuss what being in treatment and having a family looks like, while we discuss health and treatment, all these things that come up that we want to talk about with someone. Well, let me talk about that with you. Let me be the person to share my experience with you.
