13.

I still have my port installed. Every oncologist is different. MD Anderson tends to be, like, very fatalistic and like, you’ll probably have it until you die. Most oncologists say if you can be cancer free for like a year, they’ll remove it. It doesn’t bother me that much. My daughter likes to crawl up in my lap, and she’s like, “can I touch your medicine button?” And she likes to massage it.

[It’s] kind of like a triangle, and it has three dots, and they just jam it [in]. And then it has a line that basically runs straight to my heart and so that they can give me medicine, fluids, whatever it is. I have to carry around this little card, and it tells people in an emergency how to flush it and stuff like that. Obviously, because there’s, like, a ton of muscles in the chest, sometimes it’s really pronounced and you can see it, and then sometimes it’s not. And the scar has finally faded. But for a while, it was gnarly. That was, like, the first of all the scars.

{So how did you first find out?}

We had dropped the kids off with my parents for spring break. They live at their ranch a couple of hours away. Totally looking forward to a kid free week, living our best life, that sort of thing. And the last night before we were headed back home, I woke up in the middle of the night, and I was like, wow, I have a stomach ache. I was like, that’s so weird. Super intense. It must have been something I ate.

We drove back [home], and I mean, every bump in the road, I was like, “wow, my stomach really hurts. It is angry. There is something not right. I must have really eaten something that upset it.” So got home Sunday night, and then in the middle of the night, the cat walked across my stomach, and apparently I winced in so much pain and screamed that it was like, ‘okay, this is not good.’ So it was like, “you need to go to the emergency room.”

I went to the emergency room in the morning, of course, because I waited. I was like, “let’s get the kids off to school. I don’t want to freak them out.” They did a CT scan and they were like, “there’s this area that looks inflamed, and your white blood cell count is, like, through the roof.” And they’re like, “it’s probably consistent with Crohn’s disease, which would explain the stomach. But they checked for appendicitis because it was kind of in that same area, and they were like, “this area is kind of lit up,” so [they] pumped me full of antibiotics.

The GI doctor on call was like, “schedule a colonoscopy just to be safe.” Oh, God, I really don’t want a colonoscopy. I get the call from insurance because I’m under the age of 50 and because at this point, it wasn’t a diagnostic, it was just like, ‘let’s see.’

It was, like, $1,500 out of pocket, which I feel really lucky that I’m in a financial place that I could afford it. But of course, I’m thinking, what if it had been ten years earlier when we were, like, poor right out of college and newlywed[s]?

That was deep in the heart of COVID and my spouse was not able to go in with me. He just pulled up to the colonoscopy clinic, dropped me off, and was like, all right, I’ll see you in a couple of hours.” So they send you into the colonoscopy clinic, and they do the thing. And even then, they’re like, “based on the CT scan, we don’t think it’s anything. Crohn’s disease can cause some issues, so we just need to be safe.”

I wake up from the anesthesia, and they just hand me a stack of papers, and they’re like, “we found a tumor. We biopsied it. If it’s negative, we’ll mail you a letter. And if it’s positive for cancer, we’ll call you.” [I was] just like, “what? Okay.” Even then, the poor GI doctor is like, “Crohn’s disease can sometimes cause scarring, and it can cause these. So, like, let’s not freak out yet,” but I’m looking at this [giant] stack of paper, and they send me on my way.

They’re like, “okay, text your pickup person that you’re [ready]” so I walk outside of the clinic and open the door. And Jordan at the time is like, “how did everything go? Do you still want me to take you to Jason’s Deli?” Because I told him that was the thing I want to do, and I just burst into tears and handed him this stack of paper, and I was like, “they found a tumor.” And he’s just like, “what?”

They were like, “it could be seven days; It could be 14 days because of COVID.” So they send me home in purgatory. But even then, they’re like, “it’s probably not cancer. It’s probably not cancer.” Everybody-family, friends, everybody’s like, “there’s no way it’s cancer. You’re 36 years old. That’s crazy. You had no symptoms.”

I was working from home at the time exclusively. So I’m sitting there. It was a Thursday. I still remember it perfectly. I’m sitting there by myself in the middle of my work from home day, and I get a phone call. And I didn’t recognize the number, but immediately I knew. My stomach just sank to the floor. And I answered the call.

I actually have [it] recorded on one of my phones because I just started disassociating. I was like- I’m not going to remember anything he said. So I- in some coherence- hit record and actually recorded the phone call. And at the very end of the voice memo, when I hang up the phone, there’s a split second where I don’t hit stop and you can just hear me burst into tears. It’s like, really sad.

Colon cancer is one of those weird cancers in that you can’t stage it until they actually get in there and remove it. So you’re in this again- purgatory is the only word I can describe it- where they’re like, “you have cancer”, but you don’t know- it could be stage one or it could be stage four, and you know nothing until surgery. And sometimes surgery can take weeks and weeks to occur. So again, you’re just immediately thrust into- this is your life. And that chapter is closed. That book is completely closed.

Then it’s like, “here’s four other books that could potentially be open, but you won’t know which one you’re reading yet.” So you’re just like in this weird in between stage right before surgery.

I called my husband at the time, and it’s the most heartbreaking phone call you can do is to call somebody in the middle of their workday. I’m just like, “hey, the doctor called. It’s cancer. He said that he has a call into a surgeon, and the surgeon should be calling me sometime today. And the surgeon will try to see us as soon as possible.” I called my best friend and just immediately burst into tears. I called a couple of other friends. I then FaceTimed my parents and was like, “hey, are like, you all sitting down?” Because I needed to see them. There is nothing as sad as having to just break everybody you love[s] heart in one 30 minute interval. It’s just like, okay, let me look at my phone and call every single person I love… basically just the most fucked up game of telephone ever, right?

Luckily, my parents being retired, they were able to come immediately. They came the next day. I got a call from the surgeon, and he’s like, “hey, I can see you all tomorrow.” We’re like, “great.”

So we go meet with the surgeon. Even then they’re overwhelmingly positive. It’s just, like, really funny the things that people tell you when you’re deep in grief to attempt to make things better. They’re like, “of all the cancers, this one’s the best to get.” And I’m like, “okay, thank you.” I know that that’s coming from a place of medical love, but also what?!

The surgeon that I used, he’s the best of the best when it comes to robotic surgery. He’s like, “normally I have, like, a six to eight week window,” but I shared my story with him, and he felt really empathetic for me, especially being a mom with young kids. And he was like, “okay, I was supposed to take a day off in two weeks. I’ll take a half day instead, and I can do your surgery first thing in the morning, so you have ten days to kind of get everything together.” And I’m like, “okay.”

So we have ten days to kind of assemble our army. We got to get childcare lined up. I got to fill out all of my medical paperwork to go out on leave. I have to break the news to everybody at work being like, “hey, I’m going out, and I don’t know how long.” I work for the most amazing company ever. When they found out, they were like, “just go. Come back when you’re ready.” I think I went out of work pretty much when I got the phone call that I was diagnosed.

Thankful for the space to just go and be, and that was one thing off my plate, but I know there’s lots of women in my situation that aren’t as lucky and have to manage that as well.

So we had ten days to prep for surgery. It’s a pretty invasive surgery. It’s basically like a giant C section scar with two other scars. I had never had surgery before other than my wisdom teeth, even when I had kids. I mean, other than giving birth, never been to the hospital, never had surgery, never had anything so [I was] absolutely terrified.

When they do colon surgery, there is a risk that they could perforate your bowels and have to have an ostomy bag. And that was something they told us. I think I disassociated. Jordan was much more freaked out about all the side effects than I was. I just was like, “all right, let’s get this shit done.” They ended up taking my appendix. They took half my colon, so I had to do a complete colon restructure.

They’re like, “we’ll biopsy everything, and usually the results take two to three weeks. We’ll see you at your first post surgery checkup.” So even then, after surgery, you’re feeling good.

{How did you tell your daughters about your diagnosis?}

We were really thoughtful in [that] we knew we had to tell the kids that I was having surgery. But at that point, they had no concept of the word ‘cancer’. We hadn’t had anybody in our life at the time that had dealt with cancer. So we told them there’s good cells in your body and bad cells in your body. Normally your body fights them, like when you get a cold.

During the height of COVID they’re very aware of germs and immune system in the body. So we kind of leaned into some of that. Some things like a cold, your body can fight it. Some things like COVID, some people struggle to fight it. And that’s why it’s very serious. So Mommy has some bad cells that have kind of taken over.

I have a picture of the little graph that I showed them and the girls on the floor right before I was telling them, and it’s a picture of my colon. And we showed it to them and said, here’s where the bad cells are, and they’re going to go in and they’re going to cut it out. And then depending on how that is, they may give me some medicine. And they understood.

Their main concern was like, “well, who’s going to stay with us?” They got excited once we told them, “family is going to be here, like grandparents and aunties and uncles.” And they got really excited by that.

When I had my first kind of post surgical checkup, it’s like this tiny ass room. And even up until that point, even getting diagnosed, the only word I can describe it is I just disassociated, right? Because you immediately go into all of the things you have to take care of. And I’m like, “this is going to be fine. We’re going to have the surgery. We’re going to take care of. It’s going to be fine, it’s going to be fine.” So you cry, but it’s not like that kind of release. It’s just like, it’s fine. It’s sad, it’s fine, it’s fine. I was very stoic during all of it.

And then we sit in this tiny room and again a stack of papers, and they’re like, “okay, good news. Like, your incision looks really good and everything. The bad news is that it’s stage three.”

The way they grade it is 3A, 3B, 3C, and then it goes to 4. Mine was 3C because of the 25 lymph nodes that they took, cancer was in five of them. And in one of the lymph nodes, cancer was actually growing on the outside of the lymph node. So it was pretty invasive.

So they’re like, “we’ll get you scheduled to get a port installed, and I have an oncologist expecting your call. Give him a call.” Then we get in the elevator and I just started [bawling and] now Jordan’s having to physically hold me up. Everybody in the elevator is terrified. They’re like all cowering in the corners because they’re like, “what is this woman’s problem?”

Scheduled a meeting with the oncologist. He’s like, “you have garden variety colon cancer.” Which, again, it’s the audacity of these men to describe this life changing trauma in such a like, “this is the best cancer. This is garden variety cancer.” I’m like, it’s cancer.

{What is it that made yours a stage 3C?}

Usually, like a size of the tumor is a good indication of stage because it’s infiltration. With colon cancer, the way they stage it is you could have a massive tumor blocking your colon. But if it hasn’t infiltrated the outside, it could still be stage one. How much infiltration: does it go just into the wall? Does it go into the middle of the wall? Does it go to the outside of the wall? And then does it infiltrate the lymph node? So that’s how they stage it. It’s more about infiltration versus tumor size.

My actual tumor wasn’t that big, but it was the fact that it had infiltrated the way it had infiltrated. We meet with the oncologist. He’s amazing. We vibed instantly. I’m one of those people that I immediately go into research mode.

The only thing that got me through the early days was connecting with a couple of other young moms who also had colon cancer and young kids. I talked to one of them on the phone in Dallas for like an hour. It was like a friend’s, sister in law’s, best friend. Never spoken to her again. But that 1 hour conversation of just a mom being like, “it’s going to be okay. You’re going to be fine.” I mean, we talked for an hour, never met, don’t know this woman. But the fact that she was willing to talk to me after her kids went to bed was the only thing that gave me some sort of life back then.

My oncologist had told me this- “you’re always going to find the information that you seek.” If you’re seeking the survival statistics that are crap, if you’re seeking the sad stories, that’s all you’re going to find. You will always find what you’re seeking. I’ve joined a lot of the more like science based colon cancer groups. And that’s where I just went into education mode. I learned about the different types of tumors, what it means to be different grades, learning about asking for mutations.

There was this relatively new test. It was called a Signatera test. And at the time it wasn’t even FDA approved for standard of care. So it was still in clinical trial, but you have to get the timing perfect. So after surgery, they have to be able to access your tumor, and they take DNA from your tumor and then via a blood draw, every three months, they can detect via a positive or negative result.

Positive means there’s cancer DNA somewhere in your body or negative there’s not. And so it can detect a recurrence eight to nine months before a CT scan. But again, my oncologist, even though they had a relationship with Natera, had never offered the Signatera test and wasn’t really aware of it. I told him, “look, I read about this in my groups. I’m very interested in getting it done.”

I actually called the manufacturer of the test and said, “I’m a patient. I cannot find an oncologist that offers this. Can I self pay for the test?” And they said, “actually, your oncologist already has a relationship with us, so we could send a kit to his office, but you would just need to pay for the test out of pocket.”

It’s me having to advocate with my oncologist. And he’s like, “look, you know that this is a box that we can’t undo, because if it ever does come back positive, we can’t start treatment because we don’t know where it is.” So I said yes. I want the test. I paid for the first one out of pocket.

After surgery, right before I started chemo, I got the first blood test result back and it came back slightly positive, 0.5. And they’re like, that makes sense. It was in your lymph nodes. That’s why we do cleanup chemo- you need to do the twelve rounds.

So originally we had chemo scheduled every two weeks. I started beginning of June 2021, and I was on a drug cocktail called Folfox. It’s all the platinum drugs. Those are the ones that when you see and hear about people having a terrible time with chemo, it’s usually the -ox drugs. Oxaliplatin specifically is really hard. And they told me up front, “most people will not complete twelve rounds on this drug. We’re going to have to go with as many as we can because it’s going to be very hard on your body.”

It causes horrible neuropathy. People will develop an allergic reaction to the Oxaliplatin at some point during treatment. So we knew that going in, and it’s really hard on your liver get through the first round of chemo. I feel really guilty saying this, but chemo was probably the easiest of all of this. I didn’t have a horrible reaction.

I did acupuncture twice a week. I was really on top of my symptoms. I worked out as much as I could when I could. I really tried to take care of myself physically. I got lucky that the physically presenting symptoms were fine. I didn’t have a lot of nausea. I did have some tiredness, but it was still very manageable. I could still be a mom, I could still function.

Where chemo really hit me hard was internally my liver was super angry and I had horrible neuropathy in my hands and feet. I lost feeling in my fingers and toes. I’ve since got most of it back, but that’s kind of par for the course with this drug and you know that going into it. My liver was just really angry. So they had to stretch out the chemo to every three weeks.

Then eventually, as predicted, around five rounds, I developed the allergy. Like ten minutes into getting the drug, broke out in hives, couldn’t breathe. They had to stab me with Benadryl. It was very dramatic.

I had a really wonderful group of women that I know via church. We had set up this little zoom mom’s call during COVID to just have a connection with each other, which was the biggest blessing to me, because then when all of this happened, I mean, they just rallied around us. They set up a meal train, so we had meals taken care of while I was at chemo. We had more just gift baskets and things for the girls and people taking them to Barnes and Noble.

If you talk to the kids about my cancer journey, they don’t have any sort of negative association with it at all. They are like, “oh yeah, we had people drop food off and we got dessert every night!” For them it was just like, “oh yeah, mom was really tired and we got to snuggle her when we got home from school.” It’s very interesting how our people kind of helped me protect them. They’re like, “oh yeah, we had a lot of family in town.”

We got through chemo. They kept running the blood test and after the first one that was positive, the next three were negative. So it’s like great, the chemo is working, it’s doing exactly as intended. This is amazing.

I finished Chemo in January 2022. You get through the twelve rounds, this is great. Get clean scans, everything’s wonderful.

My first checkup in March of 2022 on that three month rotation. They rerun the blood test. They redo my scans. Scans are here. Blood test is positive. Sorry I missed. But it was 0.15 after surgery, which is still a really low number because it can go, like, over 100. When they reran it post chemo, it was 0.7. So I’m devastated at this point.

In fact, it’s like every single crappy phone call I got after the first diagnosis, the kids just happened to be with me. I had taken the kids to go get boba because that’s our treat. And we’re literally standing there in line at the boba shop, and I get a call and I answer it, and it’s my oncologist. And he’s like, “I have to tell you, it came back positive.” And I’m just like, keep it together, keep it together. Don’t lose your shit in front of the kids.

I’m like, “hey, it looks like it’s going to rain. Let’s go drink our boba in the car.” So I put them in the car, and I’m literally standing in the parking lot outside of the boba place in the rain, just because I didn’t want them to hear my conversation.

I’m like, just make it home. Just make it home. Just drive home. So I drive home. I tell them, “oh, you can watch TV.” And I was like, I cannot have them see me. Just so sad. So I send them inside, and then I just laid in the front yard and just cried.

I was just like, I don’t think we can go through this again. I just don’t think any of us can. I mean, so soon, too. It’s like three months of “remission.”

I found the survival part of the journey has been substantially more difficult than the actual warrior part of the journey. I hadn’t even adjusted to the next phase of life. The goalposts are [already] moving. What is happening?

I met with my oncologist, and he’s like, “look, like I told you when we got the test, all we can do is monitor. We can’t treat. We just have to watch and wait.”

I’m not a watch and wait type of person, right? So immediately, overnight, I’m like, I am a vegan now. I am working out 150 minutes a week. I am plant based. No meat products, no alcohol, no sugar. But in the meantime, I was like, I can’t just wait.

I had made the conscious decision not to initially get treatment at MD Anderson, because I really liked my oncologist. He was very pastoral in his care. I liked the relationship we had.

[At this point], I scheduled a consultation with MD Anderson, and they ran their own set of scans, and they said, “yeah, your scans are clear. Let’s watch and wait.” And I again, had to advocate for myself. I said, “look, I was a three C to begin with. The chances of it coming back in my colon are small. It’s going to show up somewhere else, which is going to pop me to four. Can I please get mutation testing done on my tumor?”

They’re like, “well, we don’t really do that unless you’re stage four.” I’m like, “I am literally standing outside the house ringing the doorbell. I don’t know how much closer I can get to being stage four. I’m asking you if I can get this mutation test.” So reluctantly, they do, right? Which, again, I had learned about in all my colon cancer groups.

I think the only reason why I’m alive today is because I had educated myself in a way that I could advocate for myself, because nobody else will advocate for you.

What’s really interesting in the cancer groups is it’s mostly all women, and it’s either women advocating for themselves or women advocating for their husbands.

I get the mutation testing back. One of the mutations that I have is called the KRAS mutation, which for years has been called the undruggable mutation, which is never a good thing. Then within the KRAS mutation, there’s all these other sub-mutations. You start to funnel it down to this really unique kind of mutation profile.

I had to call my oncologist and be like, “hey, I got the results in my chart. Are there clinical trials that I can be considered for?” I have to ask for it and beg for it. It took him a couple of weeks to do some research. He’s like, “hey, I think I found a clinical trial that would be great for you. It’s like a unicorn trial, and you’re like a unicorn patient. You have to have the KRAS mutation. You have to have colon cancer. You have to have not just the KRAS mutation, you have to have the G12D subset of this mutation, and you have to have a positive Signatera result, but a clean CT scan. They’re only taking 18 patients across the nation, and MD Anderson has ten slots. Are you interested?”

It’s a first in human trial, which is a whole other vibe. Again, they hand me the stack of papers, go through the consent forms, talk to your family, make a decision. It was an immunotherapy trial, which I had learned about in my colon cancer groups.

Immunotherapy is the hottest thing in clinical trials right now because it’s so much easier on the body. It’s working kind of like a vaccine, where it’s training your body to fight it yourself. And especially in the KRAS mutation, there’s some promising studies that are showing this formally undruggable mutation is where all of the money is being pumped right now in regards to clinical trials for colon cancers.

I qualify for the study and decide, yeah, this is something I want to do. Luckily don’t have any reaction. I have some itching, I have some tiredness. The good thing about the trial is the whole time, they’re monitoring all of my labs. Before I started the trial, they reran the Signatera test, and it had gone up a little bit, from 0.7 to 1.89. I’m like, wow, that’s a pretty big jump. But okay, so I’m doing what I need to do.

We’re monitoring another one of my tumor markers called CEA, which had always- even when I was initially diagnosed and had full blown cancer- [been] in the normal range. It was less than three, which is normal. It was like, 1.9. Great.

As I’m starting the trial, I start to see some of my tumor markers going up, and they’re like, “oh, it could be pseudo progression. Sometimes that happens. It’s inflammation. It’s your body reacting. It’s okay. Your scans are still clear.” I have scans in August. Still clear. Okay, so I have another round of scans in October, and they rerun the blood / Signatera.

I’m in the car with the kids. We’re going to Galveston for the weekend with our best friends, and I’ve got four kids in the car, and I’m getting a call from my oncologist, and I know that it’s my Signatera results. I answer the phone, I don’t put it on loudspeaker.

“I’ve got the results. It’s 12.89.” I said “okay.” He goes, “we’ll get you in for scans next week. The number is high enough to where we will find something next week. We don’t know where, but your cancer is back. We will know where next week. Okay?”

I pull over [at] James Coney Island. I’m like, “it’s a bathroom break and we’re going to get French fries!” I’m [thinking] ‘keep it together. Keep it together. Keep it together. Make it to Galveston.’ Finally, after the kids are [in] bed, [I] just break down. Just funnel Xanax the whole weekend just to get through.

It’s like the new stage of purgatory because you don’t know where it is. You just know that it’s back and it’s bad. That’s a big number. This means I’m going to be stage four.

This means that you just know that the next chapter is going to be really ugly. But you haven’t started the book yet. You’re like, I know I’m going to hate this.

We get back from vacation, we get my scans, and then we get the results on the Friday. And they said, “okay, we found it. The good news is that it’s metastasized to your ovaries, but it seems to be contained. The left ovary is the size of an orange and your right ovary is about the size of a key lime.”

I’ve always had ovarian cysts, so I didn’t really think anything of it. “This does make you stage four. However, the silver lining is that sometimes people who have ovarian mets seem to be self contained. Your prognosis could be okay.”

He’s like, “we need to get you scheduled with the surgeon.” The thing with ovaries is because they’re self contained and they’re really good at attacking itself, it’s going to grow. By the time I had my surgery, the left side was the size of a pomelo, which is bigger than a grapefruit, and the right one was the size of an orange. So I looked like nine months pregnant. I was in so much pain.

I called MD Anderson and was like, “hey, I’ve been doing Advil leading up to surgery, but could you prescribe me something?” And I’m thinking like prescription Tylenol. Prescription Advil. They write me a prescription for 90 oxies. I did not fill the prescription. I don’t need 90 oxies. I’m like, this is why we have a drug problem in America. How would I take 90 in like ten days before my surgery?

Unlike the first time where they did it laparoscopic, this one, they had to do the one where it’s like my scar goes above my belly button all the way down. I mean, it’s like an eight inch long vertical incision. The surgery was two parts: removing the ovaries, but then it was exploratory. Typically when it metastasizes to the ovaries, there’s a couple of other areas.

Ovaries don’t respond to chemo. So they said “most likely it may have been in the ovaries when you were first diagnosed, and it just wasn’t responding to chemo. And sometimes you can get a negative Signatera during chemo because it’s killing off a bunch of cells, and that can kind of dilute it.” Luckily, it was localized. They didn’t find it anywhere else.

That was in November of 2022. So I’ve had a couple of doctors appointments since then. My Signatera continues to be negative, so I’ve gotten three or four negatives now. So I’m technically in remission. This is the longest I’ve been in remission.

Unfortunately, when you’re stage four, it’s just kind of like a watch and wait sort of thing. It could never come back. It could come back next month. You just kind of never know. So you’re just kind of in your new phase of purgatory.

I think there’s a lot more support and resources for how to actually be in the thick of cancer. It’s like when you have a baby, everybody tells you there’s pregnancy books and there’s books about how to have a baby, but nobody tells you what to do when your nine year old is having mean girl issues at school.

No one tells you that shit, which to me, it’s substantially harder for me to parent a seven and a nine year old than it was to do like a seven month old. Kind of like with cancer, too, though. When you’re in the thick of cancer, you have a chemo plan, you have a doctor. This is what you’re going to do. This is what you’re going to be monitored. It’s kind of like when you have that baby.

Survivor is like having a preteen. No one tells you anything. No one really talks about it because to the world, everybody is like, “well, you’re fine. You’re in remission. You’re supposed to be fine. Everything’s great.” And you’re like, “I am in worse mental health now probably than I was starting out.”

My first Mother’s Day after getting diagnosed, a month after getting diagnosed, I remember [saying], “I don’t want to make it a big deal. Don’t go all out with the kids because I don’t want them to associate Mother’s Day with making a huge production on the off chance that I’m not here one day. They don’t know that they’re missing out on something.”

I remember sitting there on the couch opening presents and just trying to keep it together. And then the kids go upstairs and breaking down crying. Jordan, my husband at the time was like, “you know it’s not going to be your last Mother’s Day, right?” I think it gave me the permission to [relax]. And I’m like “you’re right.” And he said, “this will probably be the crappiest Mother’s Day. This will be the worst one, so just get through the day.”

Was it the worst? No, it was not the worst one. Mother’s Day 2022, finish chemo, have this positive result sitting in a watch and wait. So it’s like purgatory 2.0. I remember just being thankful that I was there because the year before I was like, shit, I don’t know if I’m going to be there. So I’m thankful that I’m here for this. But still, it’s like, I don’t know what’s around the bend, right?

So then now we’re on Mother’s Day 2023, and it’s just like, technically I’m in remission, and technically you’re supposed to be good for most people. It’s like the cycle of grief should have ended. This is where you lean into the joy.

I very much have learned through all this cancer, joy and grief are like parallel roads that have touch points, but they’re very much always running alongside each other. And every one has been hard for different reasons. This one’s hard for its own reasons as well, because again, that survivor stage, I feel like is significantly more difficult.

You have pregnancy appointments and everybody throws you a baby shower, and it’s like, very sweet. And when you go through chemo, it’s the same things, but nobody shows up with a casserole. When you’re having a bad mental health day because you are in remission and you’re scared, it’s this weird black hole that you’re in. And that’s when most people need the most support. Survivorship is very hard.

Survivorship is like when you have your post chemo existential crisis, which is a thing and is a terminology that everybody uses. There’s that stupid country song. It’s like live like you were dying, and everybody has this- if you were dying, what would you do? And you’re like, I would have a list of like… I would take up art classes. I would take up piano. Everybody has this really romanticized version of what they think they would do given the thought of time being cut short.

The reality is, all of that is bullshit. You still have to show up and go to work. You still have to show up and be a mom. You don’t have the time and space to romanticize your life, right? Everybody thinks of joy as these big moments, right? It’s these big occasions. It’s these big trips, vacations and things like that.

And everybody, when you think about cancer, they’re like, “well, what are you going to do after chemo? Are you going to take a trip? Are you going to do something?” Everybody kind of clings to these big joys, so to speak. And the reality is that is not where your joy lies after this.

When you’re in the depths of grief, the big joy seems so far away. It just seems completely unattainable. And so when you’re in the depths of grief, you have to cling to the small joys. Like, I made muffins with the kids today or I went swimming with them.

Everybody tends to think that if you have this new lease on life, you’re going to grab the bull by the horns and you’re going to do all these magnificent things and you’re all of a sudden going to become this wonderful, altruistic, giving person in the next chapter of your life. You’re going to be all those things. And you’re like, that’s not the reality of what happens when you’re in the depths of grief.

The things that change you is like, “oh, I’m going to actually appreciate the small joys which are accessible to everyone.” Cancer or not, we just tend to ignore that.

There’s this phrase in the cancer community, it’s called grief tourists, which has completely changed my life because the people you think are going to show up for you the most when you have cancer are the ones that actually don’t show up for you. And it’s all like these other unexpected, beautiful friendships and relationships that come out of it.

There’s this concept of grief tourism where it’s like, all of a sudden you get cancer and it’s like you have these randoms that cling to you for information. And you go from being like “my friend Christine” to like “my friend Christine, with cancer.”

With grief tourism, there’s like a playbook, right? You’re allowed to be sad, but not too sad because then you’re depressed, but then they want to see you happy but not too happy because then you’re in denial. I had multiple people tell me, in the beginning of my journey, that I was being dishonest with myself and with other people because I had such a positive attitude the first time around.

I don’t know what you want from me. There’s no playbook for grief. But with grief tourism, there’s this [idea that]: you’re sad and then you get through it and then you move on. And then you’re a survivor and a warrior and you have a story.

The reality is all of that is just jumbled up into this big mess. But if you don’t follow this playbook that people tend to have as it relates to grief, it’s just really weird, the reactions that you get.

I’m really happy with where I am in my headspace. Even on the days that are hard, I feel like I’m exactly where I need to be, doing exactly what I need to be doing. Even on the hard days. This is just who I am. This is my story, my truth.

{What has been your daughters’ reactions to all of this?}

Have you seen the movie Encanto? There’s that really beautiful scene at the end of the movie where the casita is destroyed and the family’s having to rebuild and all of the townspeople come and they help them rebuild I think about that scene a lot and we talked about that a lot, actually. A moment where some of my church friends it was like at the very end of chemo and I was on my mom’s call and I was like, I’m so overwhelmed. The house is a mess. I don’t know how to get myself out of this hole.

My best friend and a couple of other people from the Mom’s Club are like, “we’re going to come to your house on this day from these hours, put us to work.” They walked in and they took down my Christmas tree. They put all the Christmas decor away. That giant donation crap pile that sits in your house that never goes anywhere- one girl loaded it in the back of her car to donate. Another girl took an entire trunk full of trash, just trash. And then another one helped me fold and sort the girl’s laundry and put it all away.

My kids see that. And so when I think of what my kids think about it, I would like to think that that’s the vision that they have is like, community and people coming together.

What’s made the journey a little bit more difficult recently is in my extended family, my dad had two sisters diagnosed with stage four cancer. My mom had a sister diagnosed with stage four colon cancer. And of my three aunts, two of them have since passed. We talk a lot about when my first aunt passed away.

The girls’ conversations were because they knew that she had colon cancer, was the same type of cancer that mommy had. They said, “well, how come auntie had the bad cancer but you didn’t have the bad cancer?” I think now that they’ve come out the other side of it, the actual journey through cancer, they have a positive experience, but they’re seeing the other side of it now and it’s brought up a lot of sometimes difficult conversations.

When my first aunt passed away, we talked a lot about like, “look, no two cancers [are] the same just because you have the same. It depends on how healthy you are, the age that you are, what treatment you get. So everybody’s different so you can’t compare stories, right? Mommy’s younger, mommy has a different doctor. Auntie Norma had other issues going on.”

So that’s how we were kind of able to explain away the first one. The second one, my aunt passed away from breast cancer. That was the first time that my kids actually asked, “well, how do they know if you have a bad cancer?” And I had to explain to them, cancers have different stages and it depends on a bunch of different things and the way that they give you the medicine is based on your stage.

I remember we were driving in the car, and it was the first time my oldest, Alex, asked me, “what stage is your cancer?” And I was like, you know what? I have to be radically transparent with them.

I said, “well, initially it was stage three, but remember when it came back, then it bumped me to stage four, which is why Mommy has to have more appointments, and that’s why I had to do the trial and stuff like that.”

I think now they know that it’s gone for now. And in that same conversation, Alex asked me, “are you going to have cancer forever?” And I said, “when you have cancer, it’s kind of something that’s always there. And even if it goes away, you just have to make sure you’re taking care of your body, you’re taking care of your family, you’re taking care of yourself, because you just never know. Sometimes cancer goes away and never comes back. And sometimes it comes back a bunch of times, you just never know. So all you can do is just be aware.”

So I think they’re overall in an okay space right now. The funeral for my second aunt, it was at my cousin’s house, and they had this prayer group come and lead it. It was a group of women from this church who specifically pray for people going through cancer.

So there was a lot of cancer talk at the funeral, and one kid is sitting in my lap, and my other kid is just, like, staring at me the whole time, trying to gauge my response. And I’m just like, you know what? Don’t cry, don’t cry. This is fine. Everything is fine.

Afterwards I was like, “wow, wasn’t that so great that those ladies pray for people that are going through cancer? Cancer is really hard, and it’s really nice to have.”

It’s like everything about parenting, you try to straddle the line between having radical candor with them, but then also you have to weave in hope and joy with some reality. I think for the most part I’ve learned that at least as it relates to my kids, my actions speak a hell of a lot louder than my words. So as long as the way I carry myself, my demeanor, I try to tell them all the time to match my energy.

So, “hey, Mommy’s okay right now. And if I’m not okay, that’s okay too.” But we talk a lot about that. So I think they’re okay right now. They’re in therapy for other issues in their life right now, and my cancer has yet to come up. In therapy, they would rather talk about the drama that they have with their friends at lunch. So I think that’s a good sign that they’re doing okay.

Their therapist had even said, “yeah, when I have talked to them about your cancer, they’re really well spoken.” I think they have enough information without having too much information.

The stupid shit that people tell me when I’m like, “oh, yeah, I have cancer.”

“My dad died of colon cancer three years ago.” I know about more people’s dead daddies and dead grandpas and dead grandmas.

I want to make sure that the girls are not caught off guard from any comments that may be inadvertently made to them because I think in an effort to be helpful, people just have diarrhea of the mouth and they say shit that’s so wildly unhelpful. And I really want to make sure that we can control their message and their attitude around it. But it’s hard, obviously.

It is one of those core memories. I think about that a lot, and there was a period of time where I held a lot of grief about that because I’m like, “oh, my God, they’re going to be those kids whose college essays is writing about their dead mom from cancer.” I was like, “well, you’re welcome, girls. This will get you into any college of your choice. This is a great tragedy trading card for you to have!”

That has since subsided. I think that’s a natural part of the grief process, but I would think that they’re doing okay.

{Since the interview was conducted, this mother received a positive Signatera result and is currently receiving chemo treatment.}

All content and information on this blog is for informational and educational purposes only and does not constitute medical advice. Always consult your doctor for advice on your particular medical situation.

The Mayo Clinic has information on Crohn’s disease– symptoms and treatment.

The American Cancer Society has detailed information on various ways to receive chemo; this mom has an implanted port which is what she discusses at the beginning and is shown in the photos of her scar.

Photo credit for the port scar pictures: Oak & Ember Photography

This mom recommends the Colon Town group on Facebook. Or visit their website Here.

For more information on the Signatera Test by Natera, click Here.

This mom advocated for herself by doing her own research and requesting the Signatera test. For more ideas on ways to advocate for your health during pregnancy or at any other stage in your health journey, Save Yourself Mama can help.

To learn more about the term “clean up chemo”, The Mayo Clinic has information.

For more information on Folfox Chemotherapy, GoodRx has an article.

MD Anderson has an article about the KRAS mutation for further reading, including details on sub-mutations.

The Cleveland Clinic has information on the CEA Test including the reference ranges.

For more understanding on the term ‘Grief Tourism’, with concrete examples of how you as a patient can deal with instances when they arise, click Here.

Watch the movie Encanto for a beautiful example of a community coming together to help.