Introduction

Love big, live big, and do whatever you can in this space to help make other patients’ journeys just a little bit easier.

MIchelle C.

My name is Michelle Capell. I’m a stage 4 colorectal cancer patient and survivor.

I’m a teacher. I teach fifth grade and have taught fifth grade for 17 years so that is one of my passions. I take my job very, very seriously and really love what I do.

I like to work out a lot and spend time with my little doggy. I have a dog who is part toy poodle and part bichon. She has her own little personality. She’s a little bit aggressive, but she’s special.

I do not have my own family. My students are an extension of my family. They know that I love them. They know that they’re my family. I tell them that. Their families [have] become my family. I’m very close with all of my student’s families. Even though it’s summer, I spend time talking to them [and] meeting up with some of the families.

I was in the bathroom at my parents’ house and I said, “Mom, something’s wrong with me.” She said, “Oh, that’s hemorrhoid.” I said, “It’s the size of a golf ball though.” It’s not what you think a hemorrhoid is like. It was huge. Again, I was pushed off and they said this is another side effect [of] antidepressants.

This still is not sitting right with me, but I listened to what [the] doctors say. They’re the experts. They know what they’re talking about so I listened to it all. I took it all in. Increase your fiber, increase your water, watch my diet, all of those good things, but it never seemed to really get any better.

I was always very bloated as well and I worked out a lot. I went to doctors for that and they told me I was gluten sensitive, which runs in my family. They said, “You’re borderline celiac so that’s why you’re so bloated all the time.” I cut gluten out and still didn’t get any better.

I’m trying to do all these things, but something’s still not adding up. Then finally, it became [to] point [where] I could no longer work out. I had excruciating pain in my stomach. I was doing a lot of spinning classes. In the spinning classes, you bend forward a little bit so pressure was put onto that area. It hurts. I would get off the bike. I would walk around until it felt a little bit better then I would go back to class and finish. I really didn’t know what it was.

I had a friend in class who was a nurse and she also had Crohn’s disease. She said, “It really sounds like Crohn’s. Here’s the name of my doctor. He’s great.” I was going to make an appointment with him and then the pain got so bad, I could barely walk.

Initial appointment with a gastrointestinal doctor

I had all these doctors set up, but the first one I was a GI doctor because we thought that’s the direction we were headed first. He, too, said, “This really does sound like Crohn’s,” so he put me on Linzess to make me go to the bathroom and flush my system out. But he said, “I still have to schedule a colonoscopy just to confirm.” I was 40 at that time so I still wasn’t old enough to need a colonoscopy.

Getting a colonoscopy

I went for a colonoscopy. My friend who took me was my 34-year-old friend who already had lost both parents to cancer. It was unfortunate that it was her that took me.

I came out and they come and talk to you a little bit. He basically said, “What I saw in you, I wasn’t expecting to see. And when I see it that bad, it’s not just in your colon.” I was still digesting everything and still weaning off of the medication.

When we got to the car, my friend said, “Do you understand what he said to you?” I said, “Yeah, I think so. It’s that I have cancer and it’s bad.” She said, “Yeah, that’s what it sounds like.”

Getting a second opinion

I went to MD Anderson. They do all of their own scans. They will not take any tests from any other hospital. They did the CT scan, PET scan, MRI, echocardiogram. and I had a biopsy scheduled as well. At that point, we weren’t sure exactly what stage. We didn’t know if there was lymph node involvement. We didn’t know if it had metastasized.

I was in an O.R. getting prepped for a biopsy of my kidney. While I was on the table, they called and said, “Nope, stop now. We can already tell radiologists read the report. It has metastasized to her ovary. She’s stage 4. It’s not going to matter. We need her out. We need her to start treatments immediately.”

I met with my oncologist after that and my oncologist said, “You need to be in the chemo chair this week. We don’t have time for a port.”

I was still trying to process it all. It was so much to take in. I said, “I don’t even know what that means. What do you mean I don’t have time for a port?” A port is another surgery and it usually takes a week or two. He said, “You don’t have a week or two. We have to start immediately.”

Chemotherapy

Within two days, they put a PICC line in my arm and I was in the chemo chair that night. I would get chemo Friday nights then I would infuse Saturday and Sunday.

My chemo regimen was Friday, Saturday, [and] Sunday so that I could continue working. I would leave work a little bit early on Friday and get home at 11:00 and then I would have treatment Saturday, Sunday, and then drop the pump back off Sunday night.

I had six months of FOLFOX (folinic acid, fluorouracil, and oxaliplatin) at that time. I worked through all of that and I took every precaution I could.

Side effects of FOLFOX

Being a school teacher, I had 28 kids that depended on me all day long.

Michelle C.

Cold sensitivity is a huge thing. I wore gloves all the time because I would forget. You grab something from the fridge and if I forget, I would drop something and break it because it feels like shards of glass. It’s a horrible feeling.

I had a lot of nausea with FOLFOX. I lost a lot of weight. I got down to about 84 lbs so I looked sick for sure. They put me on prescription-strength weight gainer shakes at one point

I didn’t lose all of my hair. I have a ton of hair. I lost half of it so I had normal hair for once. I assumed I was going to lose it all. It started falling out.

People looked at me, and said, “You don’t really look sick.” When you say that to cancer patients, it’s really rough. I know people are trying to be nice when they say that, but it’s almost like a slap in the face. I would love to tell you I’m not sick, but I’m super sick, I might not even make it. I’m that sick. It’s frustrating.

I would get super tired. Being a school teacher, I had 28 kids that depended on me all day long. If I sit down and they see me about to literally close my eyes, they knew to go and get another teacher to come into the classroom.

The chemo has an accumulation effect. In the beginning, it doesn’t seem so bad. A little bit is left in your body so it keeps building on itself. By the end, it’s a lot. I could barely stay awake.

Tell your doctor everything you’re feeling, every little side effect you’re experiencing. Speak up, even though it might seem little or insignificant to you.

I ended up having to go through pelvic floor therapy to help put those pieces back together the way they should be working and to make sure they were functioning.

A lot of people don’t know about pelvic floor therapy. It’s wonderful for colorectal cancer patients. They’re able to do wonders. I was able to do that for probably about eight months.

I was getting good results. They said, “Your CEA level is lowering. We know the tumor is shrinking. Your CT looks great.” I’m getting good news so I’m not thinking of these little things being of any significance. The more you know, the more you’ll speak up.

Now I tell people, “If you’re female and you experience this, tell your doctor. There are things that they can do to prevent something from happening.”

I’m sure it’s somewhere in the fine print that you sign saying this is a teaching hospital. I told the doctor, “Don’t ever do that, letting a fellow do a procedure. You knew how worried I was about having this done. You knew it took me three times to even come in. You shouldn’t have done that to me. Please don’t do that again. That was horrible.”

But that in itself saved me. I got out of the wheelchair. I was able to walk [and] that got me all the way through to surgery. Chemo was shrinking everything, too, so I don’t know if it was just the nerve block or the chemo that was shrinking everything.

Those are some of the bad side effects of FOLFOX. I still have neuropathy. It’s a severe cold sensitivity.

I’ve had instances on airplanes where I’ve had what appears like a seizure and I end up kicking and hitting everything. I can’t control it because I get too cold. I had several blankets. I pack a bunch of blankets in my carry-on so I can put the blankets on top of me.

Getting information from support groups

I was active in different Facebook groups so I knew what other people experienced. Everybody experiences neuropathy a little bit differently. Some people get tingling in their hands and their feet. I had it a couple times in my feet, but mine is more of a full body thing.

The patient advocacy groups are what helped me navigate through treatment. If it weren’t for them, I don’t know how I would have gotten through that. The doctors don’t tell you everything you need to know nor do they probably understand and know them for themselves. They don’t understand.

I wanted to do HIPEC (hyperthermic intraperitoneal chemotherapy) surgery. He was the guru at MD Anderson for HIPEC and he said, “You’re not a candidate.” He came in on his day off, in his golf attire, and talked with me for about an hour about why I wasn’t a candidate.

He said, “Listen, I’m talking to you like you’re my sister. If you were my sister, I would not be telling you to have HIPEC. It’s intense. You won’t be going back to work. Forget about work for at least a year. This is not something we take lightly. We don’t just pour hot chemo in someone if they don’t need it. You don’t need it.”

After talking with him, I said, “You’re still in on my surgery.” He said, “I am? Why? That’s not my thing.” I said, “I requested you and my surgeon is good with that.”

He ended up actually doing the hysterectomy part of my surgery, even though it’s not what he does. He was in there with the team as well. The number of people that were in there was incredible. It was a 12-hour surgery. I had no idea it was going to be 12 hours nor did they because they thought I was going to be open and close.

They were able to get everything. I had 14 positive lymph nodes as well as metastasis to the ovary. They could have just taken the one ovary, but we discussed it and said, “Since this seems to be like your progression and yours is going downward for whatever reason, we’re just going to take it all out.”

I was 40 years old. I said, “Okay, take it all out. I don’t care. Get rid of it. Get it all out of me. I don’t want to deal with this.” I was very, very lucky that they were my doctors for sure.

No evidence of disease

No maintenance chemo

When they told me no maintenance chemo, that was a tough pill to swallow. You feel like chemo is your safety net. I felt like something was being pulled away from me. I knew that a lot of stage 4 patients get put on maintenance chemo. I said, “What do you mean I’m not getting put on something to prevent it from coming back? How am I supposed to prevent it from coming back if you’re taking this away?”

I pushed and I went to the head of colorectal oncology. I spoke with her and she said, “We just don’t do it. If it’s clear margins, that’s a successful surgery. We do not believe in giving patients poison in their bodies if they don’t need it.

“To be honest, you’re stage 4. You’re going to need chemo again at some point in your life, more than likely. We don’t want you to build up a tolerance to it and have it not be effective the next time you need it. It’s not something that we just take lightly. We don’t just give it to people like that.

“Now, had you had a surgery where they came out and said, ‘There’s still some residual cancer left,’ or it’s in your bloodstream or something, then you get put on maintenance chemo. For you, you had a curative surgery so we do not recommend that at all.”

It’s rough. When you know you’re stage 4, it’s different. We don’t have good stats as far as recurrences. I felt like I needed something to help protect me.

Reaction to being cancer-free

I moved to Houston to be closer to some friends who ended up moving away. I was really contemplating moving back to Chicago. It was a really hard time in my life because I didn’t understand. I said, “Okay, God, you brought me here and now I don’t know why I’m here because I don’t have these kids to love on in my life anymore so why am I here?”

Then when I got cancer, I said, “I’m at the best place possible. People travel from all over the world to come to this hospital and I have this opportunity to be blessed with these doctors that are miraculous.”

The doctors telling me and giving me these reports, “You’re still clean. You’re still no evidence of disease.” I can breathe easy for the next three months. I can live my life. I don’t have to think about it 24/7, even though it never leaves my mind. It just doesn’t. Stage 4 doesn’t. It’s just there.

Any little feeling, you think it was cancer. Even though it’s great, you’re NED, it’s still not easy. It’s wonderful, but it’s still not easy in any shape or manner at all.

It was great until it wasn’t.

PET scan results

I got the report from my oncologist. Oncology and surgery are very different in how they talk to you.

Your oncologist is with you from the time you’re diagnosed all the way through, especially stage 4. They are going to be with you through your whole life. Your surgeon is only going to see you if and when you are surgical. If you are not surgical, you’re not getting into a surgeon’s office because they’re not going to waste their time.

My oncologist told me, “It’s in your femoral nerve. It was relatively small.” Again, I’m going down the road of, This isn’t that bad. We’re going to get it. We’re going to cut it out.

Side effects of FOLFIRI

My oncologist and I joked around about that one as well Irinotecan is part of that one and colorectal patients call that “I ran to the can” because it causes severe diarrhea.

I said, “Oh, so you’re putting me on I ran to the can?” He said, “No, no, no, it’s really not that bad.” I said, “Oh, have you had it? Because maybe if you’ve had it, then I would believe that from you. But the patients that I talk to are stuck in the bathroom for a really long time so I don’t know.”

There was some of that. It definitely wasn’t as bad though as what I thought it was going to be. Now, that’s not true for everybody though. Everybody responds differently.

I wasn’t as tired. I did gain a ton of weight. I gained about 40-some lbs, which was the complete opposite [of] the last time. This is crushing me, too, because now, I feel horrible about myself and what I look like and I feel disgusting.

That was a tougher pill to swallow because I’d always been so healthy. I’d always been so tiny and I’m very short. Extra weight is just hard.

I would say that chemo regimen wasn’t very effective. It didn’t shrink anything. The doctors told me that doesn’t mean that it wasn’t successful. They said it is successful because nothing grew. I get that. However, would I have been the same just jumping into surgery or jumping right into radiation without doing the six months?

To me, it would have been the same thing. Obviously, you don’t know until you go through it so there was no way for them to know. But after the first couple of scans, things weren’t changing drastically. They said, “Okay, this time, you’re going to have to have radiation.”

Surgery

We had all kinds of people in that surgery. There was a team [of] about six people ready to resect the nerve. My radiation oncologist had a team in there because she wanted to do internal radiation. We didn’t even discuss this. Then my normal surgical team again.

When they and opened up, they were surprised once again. Radiation moved it off of my femoral nerve. It was inside my muscle and my inner thigh. They ended up having to cut into the muscle to get it out.

I was very blessed because the head of ortho was two surgical rooms over. They called him in quickly and said, “Can you consult on this patient and tell us just how much we can cut out of the muscle in her leg [and] she’s still going to have function? Can we get all the cancer and still give her mobility?” They didn’t want to cut too much but they also didn’t want to not cut enough and not get all the cancer either.

He came in and said, “Cut here. You’ll get it all and she will have mobility back,” and that’s what happened. They were able to tell my family once again that I had a very good surgery, clear margins.

They didn’t need to resect the nerve like they originally thought. They didn’t have to do internal radiation, which they planned on doing. All of that was taken off the table. All they had to do was cut it out of the muscle in my leg.

We tried several different things. My OT had me try different things — rubbing a brush on the inside of the leg, taking a massager and massaging that area, and trying to stimulate it anyway I can.

We did that for a while and it was not going to come back. I don’t have feeling on the inside of my leg. In the grand scheme of things, that’s okay. I can walk. I can still work out.

I’m working with a trainer to build up the muscle in my leg. At first, I could barely drive because my right leg couldn’t push on the pedal. Even though I can walk, we didn’t think about building up the calf and shin muscle to push the pedal down. I couldn’t drive at first.

Even though I went back to work, I had someone driving me because I could get in an accident. My foot could easily slip off the pedal and I’m going to hurt somebody else in the process because I think I’m strong enough and I’m not. I’m still building up that area. It’s a process. It takes time.

Managing scanxiety

Scans aren’t fun. Leading up to them, that week going in, you don’t get a lot of sleep. It’s always in the back of your head. Even if you feel like things are okay, you just never know, especially being in the space that I’m in.

Thoughts of death

Dying from this disease is a very painful death. Death doesn’t scare me; it’s the pain that scares me.

Michelle C.

The more you do advocacy work, the more people you meet. The more patients you learn to love on, the more patients you lose.

I’m always upset when I lose someone I know. It freaks me out a little bit, too. I think, They were stage 4, too, and they were doing so well for so long. Look what happened to them.

I shouldn’t feel like that because, to me, that’s being selfish. I’m turning what happened to them onto me. But I can’t help myself. I lose someone and I mourn and grieve for that person, but then at the same time, I think about my own morbidity.

It’s still a very real thing for me. I’ve done very, very well. How long am I going to be able to defy the odds? Right now, I am one of the miracle stories of my doctor. But for how long, I don’t know. I would love to say forever, but at some point, I feel like I’ll die from this disease.

Dying from this disease is a very painful death. Death doesn’t scare me; it’s the pain that scares me. I’m okay leaving this life. I’m not okay leaving in severe pain.

I want to be able to say goodbye to loved ones. I want to be able to spend time. Often, people are so drugged up because they’re in such excruciating pain that it’s hard for them to even get the opportunity to do that with their loved ones and their family.

You never know when that’s going to happen so you have to live your life in a different way. Make every moment count. Love everybody in your life. Love big, live big, and do whatever you can in this space to help make other patients’ journeys just a little bit easier.

Words of advice

Be your own best advocate. Speak up for yourself. If you can, get actively involved. Get to know your disease and educate yourself. Bring reason as to why it is you have this disease.

Michelle C.

I got involved in a lot of groups pretty early on. Even while I was still in treatment, I had people reaching out to me, “Hey, do you want to help out?” I said, “I’m still in treatment.” They said, “Yeah, but you’re so positive, you always know how to respond, and you ask very thought-provoking questions.”

I started helping out right away. I jumped in the water. Anything that I can do, especially with the younger population. We know what the research says. For whatever reason, it’s on the rise in the younger population. It’s on the decline in the older population because they’re getting screened more.

The younger patients are all told, “You’re too young.” You have to push your doctors.

I wish I would have known at a younger age to push more on some of those early symptoms. I can’t go back. I don’t know what would have happened. But they told me for it to be advanced as it was, I had to have had it for 10 years.

I eat well, go to the gym every day, didn’t eat a lot of red meat, and didn’t eat a lot of processed foods. All these things that people tell you cause cancer, I didn’t do those.

You have to know what you’re going through. Know the disease. Educate yourself. Yes, doctors are wonderful, but you are one patient out of many, many patients. They are there for you, to support you, but they’re there to support and guide all of their patients. They cannot look up every little thing that’s wrong with you because they don’t have the time.