I’m probably long overdue for any kind of an official “blog” and I’m honestly semi-dreading the project it will be to sort through all of my social media posts since 2020 and sort through the “noise” to really bring in what is most important to share as I try to capture my journey with ocular melanoma. But here we are.
If you’re reading this page, learning about this blog, I hope you’re just here as a witness to my story, and not because you too, are one of the 6 in a million people diagnosed with ocular melanoma.
But if you are, allow me to give you a special mantra to focus in on when the days are hard.
#SFD It literally means “hashtag shit, fuck, damn.” Cuz with this cancer, sometimes that’s the ONLY response you have to…whatever new curve ball you’re navigating.
I’m now 2+ years into my diagnosis with ocular melanoma. I’ve cried, screamed, laughed, peed my pants, been in denial, and really all around LIVED more than I ever have in all my years prior to a rare cancer diagnosis.
I am sharing this blog in an effort to capture my cancer story more completely, to piece together the glimpses into my world and mental and emotional processing that I’ve shared and will continue to share on social media.
If you’re here for the ride, I hope I can inspire you to trust in your own resiliency. To be your own advocate. And most of all, be rebellious in just how much hope you cast out to the universe.
Category: About us, OM, why starting this blog?
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You can’t exactly be “prepared” to hear the word tumor come out of a doctor’s mouth.
I certainly wasn’t.
Early Tuesday I noticed a drastic decrease in my vision in my right eye. It was enough that I would put in my contact on that eye, & nothing would change.
It would just stay blurry. It was weird: this week it never really improved, if anything it got a bit worse over a few days.
I called my eye doctor thinking maybe my prescription needed adjusting, & was scheduled rapidly for an appointment Friday afternoon.
She ran tests, did a retinal digital scan, dilated my eyes, & based on her findings, referred me to a retinal specialist ASAP (like 45 min later) for what she thought was a probable retinal tear. ( see left eye <normal> v my right eye <abnormal>)
The retinal specialist did further testing, images, then came to meet with me alone (thanks for that virus) & explained that it wasn’t as simple to fix as a tear, that there was something growing there.
“A tumor. I know that’s unexpected.”
Time sort of…stops… when you hear something like that.
You start to wonder what you missed, & if it could have been found sooner—the what if’s & questions zip thru at a speed of 10 million/min—& you see EVERYTHING differently.
So started the crying, & that hasn’t really stopped for 24 hours. Anything can set me off right now, which is to be expected, because I’m not fine.
If someone asks “how are you,” I can’t say FINE anymore, cuz my brain just screams tumor & cancer & what if & all the feelings flood back in.
I’m shocked, scared, coping: I don’t have a lot of answers, because answers take time.
Right now, we wait to meet with an ocular oncologist to do more analysis of the tumor. Next steps will be decided based on that appointment early next week.
Tumor. I keep making myself say it because “fear of a name only increases fear of the thing itself.”
So I’m naming it: Souza if you ask.
for now, prayers & positive vibes are needed. as we learn more, & update family, I’ll update here. I’m not sure what else I will need.
For now, we cope. *breathe*
Into the unknown we go. -
Hi!
So for anyone who is less than familiar with me as a person, or maybe who just knows a bit about my diagnosis story–I’m Danet. You say that “duh-nay.”
I know. I’ve lived with it for 31 years now. It’s a tricky name to say. I’m not actually French, but my name is.
Pictured in our little fam are Danny (my husband of 11.5 years to date), our son Joshua, our daughter Tatum, and our little caboose, Melody.
We live in the valley of the sun in Arizona, which is where both of us grew up.
We love our home, and have no intention of moving because frankly, moving with one child was exhausting–we can’t even fathom moving with three!
All 3 kiddos go to school 4-5 days a week, and sometimes, in mom life, I have no idea what to do with myself, but before I know it, it’s time for school pick up again and my time to twiddle my thumbs, go to medical appointments, exercise, and often work is gone.
I’m a TOTALLY different mom than I was 7 years ago–my poor oldest is gonna need some intense therapy to recover from how OCD I used to be as a mom. These days our house is clean one day a month, for roughly…45 minutes. That day is the day the hired house cleaner comes–and it’s picked up loudly the night before.
I put up this letter board in our house recently after my husband found it on the internet cuz it’s SO true, and a good humorous gut check for me:
Danny works as an electrical engineer, which he’s done for all of our marriage. He’s thankfully able to work full time from home since early 2020.
I have my degree in teaching, and have stayed home with our kids since completing that degree. I spent 7 years working within the MLM framework of Beachbody, and learned a TON about myself as a person, and about how powerful a tool social media could be. I got very comfortable sharing my story publicly–it became a way I processed the things I was going through.
When I was diagnosed and approached less than a year later by the president of a non profit that focuses on this small, rare cancer I have about running their social media pages on the side, I couldn’t say no. I have way too much fun connecting with people, and I enjoy what I do so much.
I now work for a non-profit (A Cure in Sight) to host their social media pages, create content, host their podcast (The Eye Believe Podcast) and occasional EMCEE for live patient-centered events. I also host a personal podcast, The Resilient Joy Podcast, which honestly I haven’t had time to focus on much this past year but I fully intend on giving it time moving forward.
It’s honestly been so incredibly fulfilling and gives me so much passion to serve a community and help empower people like me, just going through this for the first time, or years into their diagnosis.
I enjoy music (my sisters insist I have to memorize ALL the Taylor Swift lyrics before I go with them to the ERAS TOUR in 2023–we got opening show tickets TODAY!), and I tend to relieve my stress cycles by screaming loudly to my favorite songs in the car. Jenna (my baby sister) once told me there’s literally a Taylor Swift song for EVERYTHING and she is absolutely right.
Besides music, I love watching a good show–recent faves have been House of the Dragon (OMG!), Emily in Paris, FRIENDS (duh), and Grey’s of course.
Books include personal development, cancer journey stories, natural how to treat cancer ideas, and TONS of re-reading Harry Potter. It’s like…my bible. I can find something of value in any Harry Potter book. No joke. I lost count at finishing the series over 25 times.
So…that’s a bit about me. Obv there’s so much more to me as a person, to us as a family–there’s some that I may hint at that we’ve recently experienced as a family connected to my diagnosis with ocular melanoma–but I may not cover it in as much detail. But before you dive into the flashback of the last 2 years to get brought up to speed on everything relating to ocular melanoma in my life, well, this is a start.
Rebellious Hope 