S1Ep1 The Diagnosis

Welcome to Care Partners Compass Navigating CRC. My name is Elsa Lankford. I am the care partner to my incredible wife, Kristine, who has stage four colorectal cancer.

She was 45 in 2021.

I think she was 48. So she was put on iron pills for a month and had the bloodwork checked again and her iron was even lower.

Wow.

So yeah, so there's obviously something wrong, but it didn't seem like, you know, a big deal.

Did she? So she was anemic. Did she feel tired?

She does a lot of exercise, a lot of steps, a ridiculous amount of steps for normal humans. So it seemed.

She might want us to edit that out. But I think you should hold on to that one. I think you can prove that legally, with over 10,000 steps a day you're.

On, right?

It's clearly. Yes.

Yes. 15,000 steps a day as your minimum.

Oh, my gosh. Wow.

Not normal, but she likes it In. retrospect. She was losing weight.

Oh, interesting.

She was doing a ridiculous amount of exercise.

So I was thinking maybe it might be worthwhile to mention her health background at this point.

So Kristine has been like I have been vegetarian. I became vegetarian earlier than her.

Like two months is no big deal.

Well, it was two years. It was actually three years. She she became vegetarian at the age of 16.

Oh, wow.

So so at that point then, she had been vegetarian for, what, 30, 33 years in 2016, she had been diagnosed as type two diabetic. And after a month, well, I guess during the the month that she was on insulin, she became diet controlled. She did not want to do medicine. You know, it's like one of those things where when you look back at pictures, then you can see it.

It's 15,000 steps a day. They lose weight like I would make cause effect with that. So I totally understand, you know, that you want assume something, but you're right. When you see each other all the time, you're not going to notice what might be more noticeable to other people or in photos.

Yes. So now looking back, it's like, oh, wow, You know, she really had, you know, been skinny.

You were in the waiting room and you found out more. Where do they bring you back to? an office?

It was to like, No, it was she was on the cot still or the gurney. Okay. You know, still kind of, you know, waking up. And they said that there was a that there was a tumor in her sigmoid part of her colon. And, you know, they they they stopped.

How much information did they give you at that point? Just that we're not doing surgery. It's metastatic colorectal cancer with a liver met. Is that sort of where you sort of knew you were at and the lymph nodes, the.

Well, they didn't necessarily connect anything together, but they did say that there is a cancerous likely cancer. So I don't even know if they could say for sure. But he knew

He had to send it. to pathology.

But yeah, to pathology. Yeah, but he knew that it looked at least cancerous.

Look, when I found out they they didn't take stage four primary cancers out or usually not until later. I was like, What? What is that about? But then when you realize it's going to take you weeks to recover and they want to start chemo right away, if that's the next step for stage four, they want to control everything in all the metastatic settings and all the outside the colon settings like that's that's the primary focus.

The tech had felt so badly that she was being notified about, you know, this cancer on her birthday that that he bought a you know, from the from the vending machine bought a of Rice Krispies treat and wrote in Sharpie like happy birthday I'm so sorry. I'm so sorry that you're having a bad day. But, you know, it was very sweet.

Oh, that was so sweet and, like, ridiculous too and lovely.

The thought of her or anybody our age or younger

Yeah, I think you're so on the money. I think people do think of it as an older man's disease over 60, over 70. And, you know, they say that the biggest risk for cancer is age just getting older. And now it's like it used to be that you'd had to be over 50 to be more at risk. And now it's getting earlier for colorectal cancer, where just being 45 is enough of a risk factor that it's like, okay, I get checked out that the polyps removed, you know, sure of yourself. And I

After I recorded with Annie, I actually had to go back and look at the calendar because between the colonoscopy and the oncologist appointment, it could have been a month. It could have been a day. I it was such a blur. So it turns out that it was the next week that we met with her oncologist.

Or what's important.

Yes. Or anything. I mean, I mean, I went in I mean, we both went in not knowing we knew what it was, but he was mostly concerned not about the giant liver tumor, but about her, her distant lymph nodes. And I didn't understand why. But during this first meeting, tha was what he was the most concerned about. He talked about what plan he had he wrote it down I was taking notes, but I couldn't understand what he was

Really, you can't spell them now. I think that's bizarre. Hats off to you for being able to pronounce them.

Well, it was. It was We got a lot thrown at us. And he explained that there is some recent studies

So like a triplet.

Exactly. And, you know, and now now that I know better, it was a triplet. It was FOLFOXIRI. So 5FU plus Oxaliplatin plus Irinotecan typically 5FU is used with either Oxaliplatin or Irinotecan. In this case, it's like putting it all together and then adding Avastin to it.

I just want to I want to ask one question. How like a spoiler, how did she do on the chemo to cheat, tolerate it pretty well.

She tolerated it like a champ. I mean, she had fatigue and that was it. This was a lot of chemo. She was she was lucky. She also follows instructions like nobody's business. She is the ideal patient for so many reasons, but she listens to everything that you know that any medical professional says and follows it to the tee.

So and the other thing I wanted to bring up is that one of the things that is available is the NCCN, like the National Comprehensive Cancer Network, something like that.

I found that afterwards, and I found it incredibly helpful. But of course it was afterwards and it helped explain for me, it was like the the Cliff notes of yes, what I wish I had had beforehand. But I by ended up with after and yeah that's that is a great idea to have it with you.

You know having a notepad is one thing, but having like a cheat sheet of these are probably the things that are going to come up the genetic testing or the mutational testing or like all the treatment things. I did want to go back, you know,

this had come up to the tumor board. The tumor board is basically where oncologists and radiologists and surgeons and, you know, a lot of different medical professionals in the cancer center go through patients cases. And they come up with plans. And that way it is not just one person's point of view, it's getting the point of view of multiple people and multiple departments. And it is crucial!

They thought it was limited to two mets and that, you know, if they could get to shrinkage, then she could be eligible for surgery. And so that's why they had that as a goal. Does that sound right?

Yes. The remaining part of her liver was healthy and the liver surgeon believed that he could remove the cancer from her liver.

I guess the takeaway is that it's. Like some people at first, they might not even think they have a chance to get to liver surgery. But if you have an exceptional response to chemo, you know, then you can go to an expert liver surgeon and see if they think it's surgical. It's it is like you said, it's a complicated disease and it's anything can happen. And they're trying to prepare for anything can happen. And part of it is preparing for something good can happen. I think

I mean, he was. Also very realistic with her. And with us and said

Oh, wow. Wow. That that's amazing that she made it. 20%. Wow.

Yeah. Yeah. There's a lot of statistics with this disease that are mind boggling

And some of them you never forget.

That was one that I will never forget

And you heard that the first day. The first appointment with the oncologist.

Yes. Now, what I did block out was when he asked if she wanted survival statistics and she said yes. And there's a lot of crying from that from those numbers that were said. They are humbling, to say the least, and hopefully continuing to, you know, get better. But yeah, that 20% became the hurdle to get past. That was THE goal. And that's that was that was really like the only goal

This was not going to end the way, you wanted it to.

No. No.

So Kristine asked for that to be told.

He asked if she wanted to hear it. And she said yes. I said no.

Oh,

yes. Oh, because he wasn't asking me. But I still gave my opinion. Because I didn't want to know. Reading them and then hearing a doctor tell you are two different things. But also reading them was also, you know, horrible.

And

Everybody has a story. Maybe not exactly like this, because it's Kristine's story. Life changes. So. Incredibly much. You know, at this point, every changed. Everything that I ever thought was important all of a sudden became it. It was no longer relevant. The only thing that was important was for her to be in that 20% category, to get to that liver surgery. That was the only thing that mattered.

Thank you for joining me for this episode of Care

Navigating CRC. Please listen up for the next episode, which will come out next week. If you subscribe to the podcast on your favorite podcast app, you will know exactly when the next episode comes out. I hope that you'll share the podcast with your friends and family. The transcript of Care Partners Compass: Navigating CRC and additional links can be found on our website Carepartnerscompass. transistor.