I’m a 29 year old newlywed with a brand new stage IV kidney cancer diagnosis, hot off the press! Some call my case the Loch Ness monster due to the super rare nature of my subtype but we’ve named the tumor on my right kidney Newman – he’s a big fella (12cm)!
It’s been a rough couple of months that’s often felt like pure torture at moments, waiting for my treatment plan and not knowing how aggressive my tumor is. When most people are diagnosed with cancer, many get surgery or start treatment right away.
Because Newman has been such a stubborn one to classify, we’ve had major delays. My case looks and stains exactly like an oncocytoma, a benign renal growth that doesn’t metastasize. However, mine has spread to my liver which confirms it is indeed cancer and that I am stage IV.
My official diagnosis is an is unclassified oncocytic neoplasm, metastatic RCC. My case is rare and I’ve been told by my specialists at MDAnderson, there have only been two other documented instances of it. So it leaves us with a lot of unknowns.
Fortunately, my most recent CT scans showed my cancer was STABLE which is fantastic news and this hopefully means the cancer is slow growing for now. This was a major relief since I was unable to be on treatment during this time and often my greatest fears would convince me my cancer was aggressive and that I’d be out of the game before I even had a chance to fight. But this journey has given me a new purpose and new hope.
My scans are stable for now, I’m beginning treatment this weekend and I’m ready for the fight! Since my diagnosis I have dedicated all of my resources to learning as much as I can about RCC and I’ve completely opened up my case to patients and medical professionals to learn and research from.
I was unbelievably scared and didn’t know what to expect when I received my diagnosis. I have found purpose in sharing my journey and my case. Why hide from my diagnosis when I can share it with others to learn and benefit from. Making the best of a crummy situation, I feel like it’s my purpose to share my journey, so anyone following in my footsteps one day may have a little more information to run with than I did.
I use social media platforms to connect with other patients and share the raw emotions, journey, tips and FAQ I’ve found along the way for others to benefit from.
There are many of us in this journey together and I’ve never seen another group of people stand up and support each other with such compassion and endless amounts of hope.
It’s unfortunate we’re all a part of this club no one wants to join but I couldn’t be more grateful for the wonderful and incredible people I’ve met along the way. If you’re new to this journey or haven’t met other warriors yet in this battle, let me start by telling you – you’re never alone!
As for me and where I go from here, I’m learning to aim higher and taking my best shot at RCC. Shoot for the moon and if you come up short, you’ll land amongst the stars.
I hope to get rid of Newman and all of his little friends soon – Jerry approves of this message.
