Chance of recurrence? “100%”

We met with the oncology surgeon yesterday at UT Southwest. The building was beautiful, very classy. I was nervous heading there, didn’t know what to expect, didn’t know what he would say. Traffic through Dallas at 7 in the morning is a bitch. Don’t recommend it at all.

Two doctors came in after the nurse checked us in, the main doctor talked the majority of the time. He was very informative and straight forward. Explained that colon cancer is on the rise and there is no cure. I will never be “cured” in the traditional sense. Stage 4 is about managing it. He explained we have many diseases that people live with their whole life and manage with different things, and that’s how he views cancer. There are lots of treatments out there to help manage it. We talked about my current chemo treatments and he said I’m on the full force dosages and they could eliminate either the Irinotecan or the Oxaliplatin because I’m getting all the side effects. He wanted to make sure I was on Avastin because that stops any blood flow to any tumors that are there that we can’t see. Don’t know what those names are? I didn’t either before all of this. I wish I didn’t still.

He said with colon cancer the spread is in three levels, lungs being the easiest to handle, liver being the second, and the abdomen being the hardest. Of course, I have the hardest. Why wouldn’t I?

He wants me to do all 12 chemo treatments and somewhere in there he will do a laparoscopic surgery to see what my PCI is, Peritoneal Cancer Index. It needs to be low to be eligible for the HIPEC. Then if it’s low, I am off chemo for 6 weeks and then have the surgery. The surgery is a full up and down cut on my stomach. Wide open. He wants to be able to see the whole abdomen to make sure they can get as much as they can. After surgery they move you to the ICU for a bit then the regular floor. It’s about a week long hospital stay. Very invasive surgery.

I told him I just wanted to extend my life longer than the five years I was told I have but he didn’t ever give me a time frame of how much longer this surgery would extend my life. Then I said I wanted to know chance of recurrence after the HIPEC surgery and very quickly and abruptly he said, “100%”. I tuned out after that. I mean, I heard what he was saying, but I don’t know if I processed it.

100% chance of recurrence. All I could think of is that I will die from this.

David took this visit as good news. Very optimistic. They wouldn’t do a massive surgery like this on someone who only has a short time here is his thinking. And now I would agree. During the car ride was a different story. I broke down. I needed to have a moment of just being pissed off/sad/depressed, all the emotions.

I don’t want any of this. I don’t want chemo. I don’t want doctor visits. I want to go back to when I didn’t have to worry about my health. I’m never going to give up, but I just don’t want any of it.

It’s not fair. I want to live. I want to see my children get married, I want to see my grand babies. I want nothing more than to continue to be a mom, wife, and daughter. I’m not done with my time on earth. I cried the whole ride home, the whole hour it took in traffic. I don’t think I looked at David, I think it would have broke me even more, 100% chance.

At 46, I shouldn’t have to think of who my power of attorney will be, who will make all my medical choices for me if I can’t. And it be a very real thing, not just a back up plan, not a just in case. It’s a reality for me now. It’s in my face. It’s in my brain all the time.

I did ask the surgeon if I could be an anomaly and survive all this and live a long life. He said absolutely, he wants me to be an anomaly. And I absolutely can be. This morning I can cling onto that. Yesterday, there was no way.

He wants me to eat high protein, high calorie diet. No losing weight. First time probably in my whole life I don’t need to worry about losing weight. Just being healthy. I need to focus on staying active and fed. Not gaining weight, but not heavily focused on if the scale does go up. David specifically asked the doctor, “so she doesn’t need to freak out if the scaled goes up a pound?” The answer was no, don’t worry about it.

Once we got home, I sat outside with my mom and talked about the appointment. It was rough because I was still really upset about the 100%. She saw it and could feel it. It tore her up too. We talked a lot about what I want in the future and that’s not a talk a mother should ever have to have with her daughter. It’s supposed to be the other way around. I told her I could never chose her as my decision maker, not because I don’t think she would chose what I want, but because I just can’t put that weight on her. I don’t want her to ever have to endure that pain.

We also met with my original surgeon yesterday for a post op check up. He thinks my care plan is a good course of action and by the time I saw him I had snapped out of my funk and told him I will find him in 20 years and prove him wrong. David and I have had our backs up against the wall so many times and come out on top, why not this time? So many times life has said, nope, that’s not gonna work but somehow we figure it out. Never to this degree, and I am not minimizing what we are going through now by any means, but we will come out on top. I know we will and I have faith. God has a plan for me, right now I can’t see what it is, but I know it’s there. I know he’s got me.

Today, I’m going to ignore that 100% chance and put 100% into my two tween babies that are home with me. We have a day of school, baking, Minecraft, and laughing. Today, I’m going to continue to fight. Today, it doesn’t hurt to touch cold stuff, so right there we are off to a good start.

I hope everyone who reads this has a 100% fantastic day! I love you all.

This was the view from the waiting room at the UT Southwest cancer building