Melanoma With Weeks Left to Live by Katie O.

Guest blog post by Katie O, Melanoma Thriver:

My name is Katie and there was a time when my family was told I had weeks left to live. I thought my biggest challenge would be surviving cancer when I was diagnosed with melanoma at 25 years old. Hi, my name is Katie and I thought tanning was safe. I knew nothing about melanoma. I felt like sunburns were just what happened after a day outside. Like many young adults, melanoma wasn’t anything to worry about. I didn’t know melanoma could take my life.

By the time I learned, it almost did.

Being diagnosed with melanoma was only the beginning. Learning how to live through the years that followed, of surgeries, the recurrences, the losses and ultimately trying to survive it all.

What started as Stage IIA melanoma from a dark, raised mole on my left forearm would eventually lead to a Stage IV metastatic melanoma. Since 2006, I underwent 18 surgeries, multiple recurrences, 3 chemotherapies, 3 immunotherapies, tons of radiation, a double blinded clinical trial, countless hospital stays and endless scans. Melanoma took away my ability to have children, a throbbing head from brain surgery, chronic pain from years of trauma and therapy treatments and all of these experiences changed my life forever.

But after nearly two decades of living with the impact of melanoma, I’ve realized the most important parts of my story aren’t always found in my endless medical records.

Melanoma entered my life when I was building a future. I was a young wife, a young mother and someone making plans like any 20 something would.

But cancer interrupted everything.

In 2008, just two weeks after the birth of my second daughter, my melanoma returned in my left armpit after two years of NED. Months later, it spread again, it went to my right lung, then my brain, my uterus and other parts of my body. There were moments when the future felt impossible to imagine.

Through the considerable setbacks, my husband stood beside me. He became more than my spouse, he had to be my medical advisor, my advocate and my courage when I couldn’t find my own. Alongside my family, who helped with meals, my babies and everyday chores.

My daughters, just 5 and not even 1, became my strength and my inspiration. They gave me reasons to keep fighting on the days when treatment left me exhausted, scared and overwhelmed.

Cancer became part of our family’s story, but it never became the whole story. There were times when hope looked different than I imagined it would.

Hope wasn’t believing everything would be okay. Hope was agreeing to another surgery. Showing up for another appointment. Getting through gamma knife radiation or another chemo treatment.

It felt hard planning for tomorrow when tomorrow felt lost. Over time, I learned that hope is not a feeling. It’s a decision.

And that decision carried me through some of the hardest moments of my life. I had to learn to focus on the moment, not what was happening hours from now. My melanoma world was a minute-to-minute chance of seeing tomorrow. That same hope led us to Disneyland after another surgery and hearing I had weeks to live.

For years, my focus was simply survival. Then I realized surviving wasn’t enough. If I had been given another chance at life, I wanted to use it to make an impact, support others so no one had to go through this. My treatment began working and I was going to raise my girls.

What began as sharing my experiences online evolved into advocacy.

Today, I work to raise funds and awareness about melanoma prevention, early detection, patient support and research. I have had the privilege of advocating on Capitol Hill, volunteering within the skin cancer community, supporting fellow patients and helping advance conversations that can save lives.

Through my social media platforms, My Melanoma World and Stop Melanoma Movement, I share education, resources and support for others. I educate on the realities of life before, during and after a melanoma diagnosis. I spend my days helping others learn what I wish I had known at 25. I don’t want anyone to fight alone.

People often think survivorship means we are “back to normal.” This became our new normal. For many of us, this is our life forever, the skin checks, the scars, chronic pain, neuropathy, scan anxiety and the lasting reminders of everything our bodies have endured.

My pain turned into purpose and found a way of growing in my most vulnerable moments. I had no idea my journal, would be the thing that helped me cope and encourage me to share my story.

When I was diagnosed at 25, I was so scared and alone. No one who was like me but today I am advocating for change, building a community and helping others understand the importance of prevention and early detection. I’m no longer doing this alone.

Every conversation about prevention. Every skin check encouraged. Every patient who feels less alone. Every advocate who chooses to speak up. Every researcher searching for better answers. It all matters. It is all worth it. Melanoma changed my life, but it did not define me. I decided that part for myself. Today, I measure survival by the lives I can impact, the people I can support and the cancerversaries I am fortunate enough to celebrate.

And after everything melanoma tried to take from me, the greatest thing, is still being here to watch my daughters grow into remarkable young women. They are 23 and 18 years old. One has graduated from college, and the other is beginning nursing school after recently graduating high school.

Seeing them thrive is a reminder of just how much this journey has been worth. That, more than anything, is the best feeling in the world as a parent…

and I was here to see it all.