The Support I Needed Didn't Exist.
So, I'm Building It.
The Support I Needed Didn't Exist. So, I'm Building It.
In 2016, I was diagnosed with Stage III chondroblastic osteosarcoma, a rare form of bone cancer affecting my maxillary sinus.
Like so many patients, I entered a world of scans, specialists, treatment plans, and uncertainty. I learned quickly that a diagnosis changes more than your health. It changes your sense of safety, your plans, and the future you thought you were moving toward.
After treatment, I slowly rebuilt my life. I returned to the work I loved, focused on my family, and embraced the gift of moving forward. Five years later, routine surveillance ended. I was told what many cancer survivors eventually hear: pay attention to your symptoms and report anything unusual.
Then, during my sixth year of survivorship, the symptoms returned.
What followed was a significant medical workup driven by migraines and visual disturbances. The good news was that the cancer had not returned. The unexpected news was a second rare diagnosis: Macular Telangiectasia Type 2 (MacTel), a progressive retinal disease that can lead to central vision loss.
Once again, I found myself facing uncertainty. Once again, I found myself grieving.
The grief that accompanies a diagnosis like MacTel is often invisible. It is the grief of not knowing what the future will hold. The grief of wondering whether you will be able to continue doing the things you love. The grief of losing the certainty you once had about your plans, your independence, and your identity.
As a nurse with decades of clinical experience, I knew how to navigate healthcare. Yet even with that knowledge, I found myself asking questions that no medical appointment was designed to answer.
How do I move forward?
How do I manage the fear?
How do I continue dreaming when the future feels uncertain?
Who understands what this journey actually feels like?
I discovered something that changed the direction of my life. There was information about the disease, but very little support for the person living with the diagnosis.
Patients were being taught about their eyes, but not about navigating life beyond the diagnosis.
That realization became my purpose.
Today, through my coaching practice, Point of Light Life Coaching, I am working to change the landscape of support for individuals living with MacTel. As a Registered Nurse, Certified Nurse Life Coach, patient advocate, and Ohio's first Encelto implant recipient, I believe patients deserve more than medical care alone. They deserve education, connection, coaching, mentorship, and a community that understands the emotional and practical realities of living with a life-changing diagnosis.
My mission is simple: to help people see that a diagnosis does not define the end of their story. It may change the direction, but it does not diminish their value, limit their potential, or determine what is still possible.
The support I needed did not exist when I was diagnosed.
So, I am building it.
Not only for myself, but for every person who receives a diagnosis tomorrow and wonders if their story is over.
Because it isn't.
Sometimes the most meaningful chapters are the ones we never planned to write.
