In the Eye of the Storm

Imagine life just starting to get good, feeling like things are finally falling into place. Seemingly worry free and looking forward to starting a new year off with a bang! 

And then the unexpected happens or should I say the unexpected returns! 

Just 6 weeks  after my husband died in 2018, I was diagnosed with a rare eye cancer with no cure, Ocular Melanoma. As hard as the news was to accept then, it's even harder now with a new diagnosis of Stage IV Metastatic Uveal Melanoma. 

Out of all my journeys in grief, widowhood and self discovery, my cancer journey has been the hardest to accept with a limited life expectancy.  

As I face this new reality I hope you continue to follow me on this journey of embracing life fully and finding joy in each moment until the very end. 

As always, Widow Your Way ❤️

Transcript

Speaker 1: 0:37

I'm gonna go through the day that I found out my cancer returned Well, not really returned, because it's always been there. Because there's no cure for ocular melanoma, so think of it as sort of being dormant and just waiting to metastasize. It's really hard to explain unless you have ocular melanoma and it's really hard for people to understand when there's been so many advancements in cancer treatments. Most people just assume because I had my eye removed and I did do radiation as well that it was gone. But the harsh reality for this disease is that there is no cure and there may not be a cure today, but hopefully there will be one day.

Speaker 1: 1:38

So on Monday, november 6, 2023, just the day after my 47th birthday was scan day and I have been doing scans every three months for the first three years and then every six months for the next two years. So this scan was a pretty big deal for me. Just six months before, in May, I had a scan and I was really really hoping that that would be the last scan for a full year Because, again, after five years of scans, I was all set to have scans annually and I actually argued with my oncologist about the scan. I said you said five years. And she said, yes, I did say five years, but it hasn't been five years yet. And I said July is just a month away. And she reminded me that not five years from the date of my diagnosis, which was July 14, 2018, she said it needs to be five years after surgery, after radiation treatment and, ideally, after your very first clean scan. So, with that disappointment and after much negotiating, I agreed to come back in seven months, which would have been December, and, for those of you that have been following me, I was super excited. I was getting ready to launch into a new career, starting my own business. So I had plans to go part time at my job at the beginning of the year. So I had decided, oh, I'm going to move my scan up a month just because I wanted to be able to make sure I had my insurance. So my scan was originally scheduled for December and then I moved it up to November 6.

Speaker 1: 4:01

That day, my friend Dana picked me up to head on out to the cancer center. It was so funny. We had to turn on the GPS to get there and she was like but wait, wait, don't tell me what the GPS is saying. She goes. I want to see if I can remember it, because six months is a long time to just go to Durham, which is an hour away from where I live, with no GPS and it just seems like the roads are always changing. The scenery just looks so much different. We were both really excited that she was remembering what exits to take and we were laughing the whole way and joking about how, when we come back in a year, we're not going to remember anything.

Speaker 1: 4:52

This year was the first scan that I've ever been excited about. I mean, I was so excited about this scan that I recorded the entire day on my cell phone. It is the first scan that I've really forgotten about in five years. It was also the first scan that I didn't send out a reminder and tell any friends or family. I didn't talk about scan anxiety and or anything like that. I wasn't even feeling nervous about the scan. This was the scan of all scans. It was my ticket to a one year follow up and this is the first scan that truly, truly, with all of my heart, that I just knew was going to be negative and it wasn't.

Speaker 1: 5:55

I knew as soon as the provider walking in the door was not part of my care team. She was really nice. She introduced herself and then the first thing she said was that my doctor wanted to be there today. But she was out of town and I thought, why? Why would she want to be there? This appointment wasn't even with my doctor, it was actually with my PA, because they rotate every other visit.

Speaker 1: 6:27

Second sign that there was potentially bad news is that she was long winded. My care team has been looking out for me for five years and they all know that as soon as they walk in the door, I want them to tell me the scan is clear. I don't want to chit chat. I don't want you to ask me how I'm feeling. I don't want you to start examining me. I want you to tell me the results of the scans, and I have been so lucky that ever since this diagnosis, every time I go to get a scan, I see the doctor afterwards and I always get my results the very same day, and I know that is not the case for a lot of patients with this cancer.

Speaker 1: 7:23

So she comes in, she is very long winded, but in reality it maybe only took like a minute for her to get the words out, but to me. It felt like forever. It felt like things were going in slow motion. I heard two lesions, mri metastasized. And then finally I heard I know this is not the news you were hoping for.

Speaker 1: 7:55

I look over at Dana, I look back at her. I look back at Dana Is this happening? Did she just say my cancer is back? No, no, no, no, no, no, no, no. This is not happening.

Speaker 1: 8:17

I look over at Dana she's not saying anything. Why is she not saying anything? And then I look back at the provider and she's not saying anything. So then I'm trying to figure out what's going on. But then she is saying something. She's just she's wearing a mask, but it's like I don't hear anything. All I can see is her eyes and I can just see her head moving, but I literally don't hear anything.

Speaker 1: 8:56

I felt completely numb and I felt like I was slipping, and I knew that feeling. It was the same thing that I felt five years ago when I got the diagnosis it's this autopilot. But this time it felt a little bit different than before. This time it felt dark and claustrophobic. Before the darkness felt safe, because before I didn't care if I lived or I died, because I just lost my husband, but now I do, or don't I? How have I become so comfortable with the thought of death and why am I not saying anything?

Speaker 1: 10:03

But then the provider. She touches my leg and she says I'll give you a moment to process. And I look down at her hand and she's rubbing on my knee and that's when I start to cry. Why is this happening to me now, five years later? Why does it seem, just as my life is starting to get good, that something always seems to come in and just tear it apart? She asked me if I had any questions and I just I just sat there shaking my head, no, and just tears pouring out of my eyes. But then there was this little voice inside of my head screaming with questions. It's like you have questions, say something. Why are you not saying anything? And I hear her. She's talking about treatments and options and next steps, and the only thing that can come out of my mouth is when can I get the MRI? And she said we're gonna do our best to get that scheduled for you as soon as possible.

Speaker 1: 11:17

So I'm just gathering my composure and I'm like I need to leave. So we're leaving, we're walking out and it's the craziest thing. I just kept trying to turn at every corner, like just trying to turn to leave, to get out of there, and we're totally missing the way to the checkout. I can't even think so. We get to check out and it's the same guy that's there every time. He's so nice and we tell him that we need to get an MRI scheduled and he's like, well, the first thing we can get is December 9th and me and Dana, both at the same time, said no, that's not gonna work. And he just looked up at me and I don't know if he could just see it on my face. But he got back down on his computer and just a few seconds later he's like what about tomorrow? Yes, we'll do it. We'll know more tomorrow.