Tomorrow is the 3 year anniversary of the surgery that changed everything for me. Feeling extra sentimental today as I look back to this post that @LauraEsfeller and I talk about in this video.
“And you know what I'm rooting for tonight, what I believe in the depth of my heart? That Katie is going to be sitting here, almost 5 years from now, sharing her story and giving hope to the next Katie or Laura.”
In March of 2021, Laura shared this post for kidney cancer awareness month. During this period of time my prognosis looked rather bleak. I had a very large tumor on my kidney, many liver mets, a rare cancer, and not a lot of options or hope. But what I did have was Laura.
Laura participated in a clinical trial for the same drug I started as my front line treatment and while I sat across from my oncologist at the time and heard my treatment options weren’t curative I held Laura in the back of my mind to get me through that difficult conversation. The results from the her trial had not resulted yet, my oncologist sitting across from me didn’t know of Laura’s complete response. She was still in the process of becoming a dot on a graph. But I knew, because I knew Laura.
I didn’t need to know the same would
happen to me, I just needed to know it happened to someone. It wasn’t impossible. Laura not only became my beacon of hope but after this post she also became my catalyst to surgery when a comment under her post became my connection to the @NCIResearchCtr. The only place, after a million second opinions, who had ever seen a case like mine and were offering me a shot at surgery.
When Laura shared this post 3 years ago, I don’t know if there was a single person who thought I’d still be here in 5 years. While I’m still working on chasing that milestone, today I was blessed with one of the most surreal moments when @Sid423 shared a post about an early read of my book.
One I sent him because of how much he reminded me of myself in the early days of my diagnosis, when I needed connection and hope.
Nearly 3.5 years after Laura’s post I’m not only still here with no active cancer but also have been truly blessed to share my story with others.
There is no force greater than these communities and the ripple effect driven by them.
The first time I saw my scans after being diagnosed with kidney cancer, I felt like I was looking at abstract art. For
#WorldKidneyCancerDay24 let’s run through them together to see what kidney cancer looks like and pick up a few tips about advocating for yourself along the way
It happened - as much as I tried to dodge my way through the swarms of flying cicadas during my jog, alas I couldn’t avoid them all and one perched(?) on my shoulder. 🙇🏻♀️😖😖😖
Inspired me to create a t-shirt that says, “I am not a tree!” Or “No vacancy - go find a tree!” 👚🙅🏻♀️
It’s officially time to start planning my book tour… words I never in a million years thought I’d say but here we are!
I’m aiming for my tour to include visiting/speaking at different hospitals or labs. If your institution may be interested in hosting a talk or panel, please reach out!
Bonus points for any GU or pathology departments (thorough comments in my path report were key in my case), labs studying kidney cancer (or rare cancers), and medical schools (love speaking w/med students).
Reposts welcomed.
Sharing my story and joining @KimrynRathmell and @JeffRathmell’s R² lab retreat last year was one of the most rewarding experiences I’ve had. Hearing her share that experience back at #ASCO’s Meet the @NCIDirector session today is now one of my most meaningful #ASCO experiences as well.
When I returned home from the retreat, I told my husband not only how rewarding it was but also how @KimrynRathmell and @JeffRathmell may be two of the most genuine people I’ve ever met.
A few weeks later, I had tears of joy when I heard she was appointed as the Director of @theNCI because I knew how deeply she believes in the “Engage Every Person” goal of the National Cancer Plan and the transformative impact she will have on cancer research. We couldn’t be more fortunate to have her as the Director of the NCI.
Team NCI shines bright at #ASCO24! 🌟 I couldn’t be prouder to stand alongside this group of individuals. Together, we’re driving innovation, pushing boundaries, and making strides to #EndCancerAsWeKnowIt. #Every1HasARole@theNCI
#ASCO24—Let’s be impatient for our patients.
We have a bottleneck of good science waiting to move into the clinic. If we are to #EndCancerAsWeKnowIt, clinical studies must be more accessible, nimble, inclusive, and designed to answer questions in the populations that need them.