Video: Stage 4 Appendiceal Cancer: “Dr. Minkoff Gave Me Hope”

Before I came to LifeWorks, I felt that every single oncologist and doctor I spoke to, it was about just making me feel comfortable or treating symptoms or just going straight to chemo.

Nobody was thinking about we need her to live. She can live. She can survive this. None of them mentioned that.

On the contrary, it was more like keep her keep her comfortable like I was already in a deathbed and there was nothing to do.

Definitely Dr. Minkoff made me feel like I had a future like this wasn’t the end.

My name is Jamie Nikolas. I’m 40 years old.

Prior to this experience, I always been a dynamic, driven, workaholic person that likes to help others and grow other people.

And in October of last year, I was diagnosed with appendiceal cancer with with mucinous in my peritoneal area. This is a super weird cancer that only two in a million people get. And I was the lucky one to get it.

The weird part about this cancer is that the symptoms are like any other and anything can be symptoms. Like you cannot have appetite or be tired today, but then tomorrow you’re back to normal. So it there’s no pattern kind of to know.

A lot of people notice when their appendix burst and that’s how you figure it out. Mine was, I was inflammated. I was already stage 4, metastasized everywhere and that’s where I found out with pain and I was losing a lot of weight.

It’s a weird cancer to treat because regular chemo doesn’t work because it’s not connected to any blood vessels. So it’s just a gel a liquid that turns into gel that covers all of your organs. I discovered my illness because I was inflammated. My pelvis and my stomach was inflammated. I thought I was having like maybe a stomach illness or just virus or something and it but it wouldn’t go away.

Like a day I would feel good and then the next day it was back again inflamed.

Like 6 months or a year prior, I stopped eating sweets. So I thought losing weight was because of that, but then it was way too rapid and I felt all this pain in my right area of my pelvis and abdomen and we thought it could be something related to my ovaries.

We started calling to gynecologists to make an appointment and my husband and I were on the phone both of us non-stop calling doctors to see who can give me an appointment sooner. That last person which my husband Tony spoke with them, he explained what I was feeling and they said like I think you should take her to urgent care.

I went in and when they started to touch me, I screamed because it was so painful. Then they said she literally did like this, I can’t do anything for you, you have to go to the emergency room.

So we head up to the emergency room that fortunately was across the street and they started doing like CT scan. They couldn’t apparently see what it was there. They didn’t tell me nothing so they did a ultra vaginal scan and they wouldn’t tell me anything.

We were there waiting for a while in the room. I got more inflamed and they told me we need to head to the hospital and I was transferred to the hospital. Nobody told me anything about nothing. They did another CT scan but with contrast this time and the results wouldn’t come in.

Doctors wouldn’t tell me anything.

Two days went by and I was in the hospital. I started arguing that I wanted to know that I would didn’t want to do any more testing until somebody came to talk to me and over the phone, the doctor called me when I was in the hospital so they didn’t come in person and they told me they found a tumor. They they couldn’t pinpoint exactly where it was and then they had a ascites which is the liquid flowing [music] and it was seen to be malignant. And that time I discovered I had cancer.

From there an oncologist came in so I saw a few doctors in the hospital, which it was crazy because nobody could tell me anything. They decided to do a biopsy, but they wouldn’t tell me the scope of anything.

Like I wouldn’t know it was stage four, it was metastasized, or what was this liquid about. Like it was so so hard, and knowing now that it is a rare cancer, it was even less knowledgeable for us, or for probably they wouldn’t even know. I don’t, I’m giving them the benefit of the doubt there. But the oncologist that I got officially assigned, he came to the room and told my my husband and my mom, “just keep her comfortable. Give her ice cream, make her feel good.”

And that was it. So, we’re in South Florida, and my husband found LifeWorks here in Clearwater, and we made an appointment, and we drove the five and a half hours.

The moment I walked into LifeWorks’ office, the waiting area, what my my attention went to everybody has hair, and even though you know they’re patients, nobody looked like a patient.

Everybody was like happy, and everybody was talking. Completely different environment to going to a hospital.

Dr. Minkoff explained to me the type of cancer that I had, which it was the first person that actually like explained to me A to see what it was appendiceal, what it entail, and what the difficulties of it. Dr. Minkoff gave me hope. He explained everything really well. He says, “We’re here to fight, and if you want to fight, we’re I’m going to fight with you.”

And that made me not feel alone. He was really gentle with me, but at the same time he’s like, “We need to fight. We’re going to do a lot. Like it’s going to be hard work. It’s going to be overwhelm, but if we do it, you can get to the other side, and we’re going to make sure you do that.”

They sent me to do some blood work specifically for finding out what I had in my blood what was the medicines that my my body will react better to it. He caught it in phases to make sure I got ready.

So from the beginning he told me you’re going to have to get surgery so we need to get you ready for that. We need to make your body stronger. So let’s start with working with that. So diet was ready. Kaqun baths were included for me to get stronger to get more oxygen in my body and everything was like okay you’re getting better with this and they added another treatment.

So I went to the surgery strong.

I haven’t completed all my treatments yet. This was a three-phase process and now we’re in the part that I have to gain my – back my weight and everything and dealing with the remaining of the cancer. So I’m not cancer-free. But I’m really damn close to it.

I can tell you I feel night and day. Like I am not metastasized anymore. I’m not stage four anymore.

What I look forward the most is I want to get forward.

I think it I’m one of the lucky ones that are still here and I can share the story.

So I think I have to pay forward. And that’s what I’m looking forward the most how I would do that and I’m figuring that out. So doing even having the opportunity to share my story here was one of those things that I can pay forward and help somebody that is undecided on what to do.

It feels overwhelmed with all the information and maybe doesn’t have the support that I had. Here you can find that support if you don’t have it at home or you don’t know what to do next.