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5 Things I’ve Learned After Being NED for One Entire Year

Last updated: September 2020

In July, I officially got to celebrate being one year 'no evidence of disease' (NED)! I was diagnosed with stage IV metastatic melanoma in late 2018, and by the summer of 2019, I was told there was “no evidence of disease” in my body. I remember not believing the news because it seemed too good to be true. I had tumors in my heart, lungs, brain, arms, and legs, and after less than a year of immunotherapy, they had all disappeared.

Lessons from melanoma to NED

Although any skin cancer diagnosis and treatment can come with its challenges, I really felt like my personal challenges came after all the good news. To say the last year has been one of the hardest years of my life would be an understatement. But I’ve learned a lot about myself and thought I’d share a few things I learned.

You have to become your own advocate

You know your body best and only you can determine when things feel different or off. I can’t tell you how many times I’ve had to beg my doctor for some sort of test because I needed that peace of mind. My immunotherapy treatment is so new that doctors don’t know much about long-term side effects. Deciphering what is something ‘normal’ vs. ‘treatment-induced’ vs. ‘potential recurrence’ is very challenging.

I use humor to cope with my cancer story (and really all difficult things in life)

I have and always will be the type of person that makes inappropriate jokes in a probably poorly timed manner. But I’ve learned that laughter really is the best medicine and it’s a gift to be able to find the humor in such a sh*tty situation!

Apply sunscreen - all the freaking time

After my initial diagnosis in 2013, sunscreen became a very important addition to my life. But I’ll admit, it wasn’t part of my daily routine. Sure, I wore it if I was spending any time in the sun, but I didn’t prioritize it daily. Now, I do. If I plan on leaving the house, you better believe I’m applying sunscreen before doing so!

The “could it be cancer” feeling will never go away

I consider myself a very positive person, but the mental trauma associated with a cancer diagnosis is very real. Once you have a brain tumor, a headache is no longer just a headache. Aches and pains from sleeping funny start to make you anxious. I’ve realized that this feeling will always be there and is something I have to manage.

Sharing my story has helped me connect with such a beautiful melanoma community

I remember searching high and low to find someone that was also going through what I was going through. There aren’t many stage IV melanoma patients under the age of 30, and I was desperate to find someone to relate to. I began sharing my story on social media and my personal blog. Because of that, I’ve found so many melanoma warriors and we’re all able to help each other not feel so alone.

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