Introduction

I’m an educator of over 10 years and an author, a mother, and a wife. I love to read, write, and paint.

Most of all, I love spending time with my family, serving in my local church, and, since I’ve been on this journey, being an advocate for other women who are on the same journey that I’m on.

Pre-diagnosis

Initial symptoms

Cancer has been a part of the majority of my adult life. My mother was diagnosed with breast cancer during my senior year in high school. I spent most of my 20s being her caretaker as she went through her journey.

She went into remission. Six years later, she developed ovarian cancer and that was a red flag for her doctors. They did gene testing and found that she was BRCA1 positive. This was back in the 90s when gene testing was just becoming more available.

I did the BRCA gene test finally in 2019 and had my regular mammogram, which came back completely normal. About three months later, in January 2020, while on vacation for my husband’s 50th birthday, I was in the shower doing a breast self-exam. Because of my family history, I’ve always done breast self-exams and been very particular about making sure I know my body, what feels normal, and what feels different.

I felt four lumps along the side of my left breast that were not there before. My husband said, “Okay, don’t worry, we’ll just make an appointment when you get back and get it checked out,” so that’s what I did.

I made an appointment when we got back home. Within a week, I was in my primary care physician’s office. She felt it and was concerned so she immediately sent me over to the breast center. From there, it went from a mammogram the same day to an ultrasound.

The radiologist came in, looked at the ultrasound, and said, “We want you to come back in the next couple of days for a biopsy.” They did the biopsy, which was not a pleasant experience. About a week later, I was getting the call to come back into the breast center.

Treatment

Discussing the treatment plan

I first was sent to see the oncology surgeon. She explained to me all the details of what triple-negative was, that it doesn’t have receptors that a lot of oncologists target for treatment, and how aggressive it is.

The standard treatment for triple-negative was the same for everyone because there were not a lot of treatment options. For all triple-negative patients, it was chemotherapy with ADRIAMYCIN, which we call the Red Devil, a really strong chemo drug that you could only have once in your lifetime because it causes heart damage.

I did the carbo-Taxol-Adriamycin combo for six months and then I would come back to her so she could remove the tumor beds that were left.

She also explained to me that I was stage 2 because even though my cancer was still local to the breast, I had two lymph nodes involved, which automatically bumps you from stage 1 to stage 2, but I still caught it very, very early. It was just because of the lymph node involvement and how quickly it spread.

It was just a shock that, at 40, this was what was about to happen. I was going to have a double mastectomy and deal with having a completely new body and all the side effects of the chemo.

My now eight-year-old was four back then. He needs his mother. Having lost my own mother, I can’t help but worry. Will I be here for him? That was one of my biggest fears. I need to be here for my children and for my husband.

I’m the type of person that I have less anxiety the more information I have. It helps my anxiety. I immediately started trying to educate myself and learn more about triple-negative, all of the treatments, and all of the surgeries.

The other fear for me, too, was that it was during the pandemic. I literally started my chemotherapy at the beginning of the lockdown. At that time, COVID was such an unknown. For my treatment team, it was one of their biggest fears.

This chemotherapy was so strong. They’d already told me it was going to basically wipe out my immune system. At a time when you need your immune system the most, they were going to have to completely wipe mine out so they were really afraid of what would happen if I did catch COVID.

My family and I had to be under very, very strict quarantine. Literally, no one left the house unless it was for gas or doctor’s appointments, not even groceries because we were doing deliveries for that. There was a huge fear. I felt like I was having to fight two monsters at the same time, pretty much.

I also started to feel the really hard hits to my body, which was the nausea. Even though they’ve come a long way with the pre-meds that they give you right before the infusion, I still was very nauseated.

The lining of my mouth, my esophagus, my stomach — everything felt on fire. The chemo attacks any of the fast-growing cells, which are your mucous membranes.

I couldn’t use the same restroom as my family because I’m toxic. I had to worry about kissing or hugging my child. On top of not feeling well, it was mentally and emotionally hard to deal with the side effects of how sick it was making me.

After each treatment, I would spend 2 to 3 days in bed because I was so fatigued. They gave me steroids to help with my appetite because, with everything on fire, you don’t really want to eat.

By the time the three days were over, I’d have two good days to be out of bed and be able to do things with my sons and my husband then it would be time for the next treatment. That became my life for six months straight.

Testing positive for COVID during treatment

In the middle of chemotherapy, I ended up catching COVID. I went in to have chemo one day in July and my white blood cell count was too low to get chemotherapy. Then the next day, my whole family contracted COVID.

I initially thought it was a false positive because I didn’t have any symptoms and I don’t have an immune system. This has to be a false positive.

I had to go get tested for COVID every week for a month. I couldn’t go back to the infusion center until I tested negative. For a month straight, I tested positive for COVID. But somehow, by the grace of God, I remained asymptomatic and, to this day, my doctors have no explanation as to why.

It got scary for my husband. Thankfully, we all made it through that. When I finally finished chemo, it was August 2020 and I went to have the next step before radiation, which was to have a double mastectomy.

I honestly felt like it was an answer to a silent prayer. That’s one less thing I don’t have to do.

After seeing what my mom went through, I was determined to do everything that my doctor suggested. I was going to follow the entire treatment plan because I have my family to fight for. I wanted to be here for them so I wanted to do whatever it took.

Unfortunately, there was a little part at the bottom of the pathology report that I didn’t pay attention to that said that no biopsy clips were found in any of the tissue that was sent to the lab. Biopsy clips are little metal clips that they put into the areas where they biopsy to mark where they found active cancer cells

In my case, the chemo worked so well. Chemo works really well for triple-negative in that it shrinks the tumor all the way down to where it’s gone and you can’t see it. There’s really no way for the surgeon to see with the naked eye where it was unless there’s something there to be a place marker.

Even if the tumor is gone, it’s really important for them to go in and take out the tumor bed where it was because that’s where the microscopic cells can hide.

I got that pathology report in October. By March, the tumors were back in all the exact same places. Everyone on my treatment team was shocked that they were back so quickly, in five months or less.

Second round of treatment

I ended up having to go through a second round of chemotherapy in 2021 and another surgery. It was a different set of chemo drugs.

At that second surgery, the radiologist brought it up. She counted the clips and said, “She had this many clips and there were only this many sent to the lab. We need to do some more scans and figure out if there’s still some biopsy clips left to make sure that everything is removed.”

Side effects of chemotherapy

The side effects weren’t as bad. I didn’t lose my hair. I wasn’t as sick. I still had nausea and digestive issues, but it was a lot easier.

They added an immune therapy drug that was approved while I was going through treatment. I started having some side effects from that as well, but they were manageable.

The treatment was shortened because they were trying to get my surgery scheduled and it got moved up. You have to have a four-week break between chemo and surgery.

From that surgery, things spiraled for a bit because the clips were brought up and I had to have an extra surgery to retrieve those clips and that set the schedule back. It was 2022 by the time I started radiation.

Compared to all of the other treatments, I have to say radiation was probably the easiest treatment that I had. It’s just that it does do a lot of unseen damage.

You know how when you sit in the sun and get a sunburn but you don’t feel anything and then afterward you get that peel? That’s how radiation felt. I didn’t feel anything. Maybe a little tired or fatigued afterward, but other than that, no major side effects until after the radiation was done.

I started to have side effects from the damage it does to your tissues internally. About two to three weeks after I finished, I ended up in the hospital with a major chest infection.

Radiation damages the tissues and the blood flow so without the blood flow, any normal bacteria that your body would fight off, that tissue can’t fight off. It doesn’t have blood flow, which means the white blood cells can’t get over there and all the things that your immune system sends to defend your body.

After I healed from the radiation, everything looked good. I went on the treadmill to try to get my energy back and get rid of some of the fatigue. When I was going through radiation, I didn’t wear bras because I was trying to be very gentle with my skin. But afterward, I thought it looked good so I put on a sports bra and got on the treadmill for a light workout.

My infectious disease doctor seems to think that because of the friction from the sports bra and because the skin was so thin, bacteria from the sweat got into the chest. I was in the hospital for almost ten days before they could get it under control. They were able to clear the infection. They gave me some really strong antibiotics intravenously.

Surgery to remove nodules

It turned from a biopsy to a lung surgery because most of the nodules were very small. They don’t want to go digging in my lungs so they’re looking for one that was on the edge. The largest one that they felt comfortable to biopsy was right next to my heart. It turned into a surgery so that they could deflate the lung and make it fall off away from the heart.

They ended up taking that entire one out, which was good because it ended up being breast cancer in the lungs. They cut that little wedge out and took out that nodule.

Reaction to the metastatic cancer diagnosis

In September when they confirmed that I have metastatic breast cancer in my lungs, it was devastating. It wrecked us because we were now into year three; three straight years back to back with no remission. We had maybe a month or two here to come up and take a breath. No real relief from this constant fight against this disease. It felt very defeating.

It took some time to process and put it into perspective through my faith and understanding that there is still life after a metastatic diagnosis. It took a while because immediately after I got the results of the lung surgery, the chest infection flared back up, but this time, it came back with a vengeance.

Adjunct therapies

Hyperbaric oxygen therapy

When I was in the hospital for the second infection, the infectious disease doctor who handled my case had a hyperbaric oxygen therapy center that he also ran. He suggested that I do hyperbaric oxygen therapy, which I had never heard of, ever. Apparently, it was something that he did for a lot of cancer patients who had radiation, especially those who had issues with wound healing.

It was a nerve-wracking experience, but it made a huge difference in healing. When I first got out, my entire chest felt like a statue. It was just so hard and there was just very little blood flow there that it didn’t even feel like flesh. I couldn’t lift my arm. There was so much scar tissue.

I started doing hyperbaric oxygen therapy. The experience with that is a lot like radiation in terms of having to go every day. For two hours, you lay in a pressurized chamber that forces high levels of oxygen into the cells, which forces your stem cells to regrow blood vessels and all these different things.

I did that for 44 treatments over the course of two months. Halfway through it, I started to feel my chest softening. I could feel the blood flow returning. That was the amazing part, being able to see the difference with my own eyes. He felt that would set me up in good standing, in case anything was to ever happen, like another surgery, or protect me against any future infection.

I’ve shared it with every survivor I’ve talked to who’s had radiation. I wish I had known about it sooner, but I’m glad that I was blessed to find out about it.

Financial toxicity due to cancer

I didn’t realize all the ways that cancer affects you and your family outside of the physical, mental, and emotional. It completely drains your finances even when you have good medical insurance.

There are patients out there who don’t have access to health care. I did have access, thankfully, through the Affordable Health Care Act. I was very blessed that my health insurance covered the majority of my medical expenses. I still had deductibles, copays, and things like that.

However, it’s also the loss of income and not just by the patient. We live in a city where we don’t have a lot of family. We have a church family and friends. They’re a great support, but during the pandemic, it fell on my husband to be my caretaker and take care of the kids. There was a lot of time that was taken away from him being able to earn income as well so we did what we could for as long as we could.

We worked hard throughout our lives to be good financial stewards. We had savings. We had retirement accounts. We did all the “right things,” but this cancer diagnosis wiped all of that out just trying to survive and not being able to go to work. A two-income household and me not being able to work is a whole hit to our finances.

Even though there are so many organizations out there for research — and I’m so thankful for cancer research — I have a special place in my heart for the grassroots organizations that are boots-on-the-ground organizations that provide help to patients themselves who are currently on the journey.

There are so many things that you don’t think about. I’m helping the organization that helped me, My Style Matters, founded by Tiah Tomlin, the young lady who got me the icing kits. I’m helping her now with some of her programs and the things that you don’t think about that become a struggle with the diagnosis — school supplies, Christmas, things like that.

They’re not on the priority list, but as a parent, it’s way up on the priority list. Being able to take those burdens off of patients makes a huge difference. It’s all these little things that you just don’t even think about or realize.

Patients are overwhelmed enough. There is a huge need out there when it comes to managing breast cancer patients or patients in general.

The main one is fatigue and severe anemia. It can kill red blood cells, which can cause severe fatigue and anemia. Sometimes you have to have transfusions. My oncologist is very good about titrating, monitoring lab work, and staying on top of those things.

In February, I had a scan that was looking really promising. Everything was stable from August of last year. In February, the scan, everything looked the same as in August, which was great. They actually said a couple of nodules were shrinking so that was great news.

I had another scan in July that said things were growing again, but that’s the nature of this metastatic journey. It’s ups and downs and I’m learning how to not be just thrown off course.

Managing scanxiety

After three years of dealing with this, I had a social worker tell me at the radiation center, “There’s such a thing as medical PTSD,” and I’ve never heard it phrased that way, but that’s exactly what it feels like.

When I go into the infusion center, my body has a physical response to the sight of the infusion center and the smells so there is this high level of anxiety.

I usually manage anxiety pretty well. It definitely feels like medical PTSD because it’s out of my control and it’s an actual physical response.

I dread every piece of information. It’s just information. The doctors are not trying to give you doomsday information. It’s cancer and there’s nothing good about cancer. I do have to mentally prepare myself.

I try to tackle everything from a place of faith and not fear. I try to give myself and others as much grace as I need and as they may need. Always try to find a reason to be thankful every day, every moment, no matter how bad, even on my worst days.

I allow myself the moment to cry and to grieve. We’re human. It’s important to allow yourself those moments to curl in a ball on the floor and just let it out, but I know I can’t stay there. I won’t allow myself to stay there. I won’t allow myself to be destroyed or conquered in that way.

Find something to be grateful for, whether it’s my son’s smile and his little face, walking outside and seeing my favorite red cardinal or blue jay flying by, or a sunny day. Take those things in with appreciation and gratitude.

I wanted him to have that that daily reminder and it was something that we could do together. He helped me with the drawings and the pictures. It was good for us. It was also my prayer that it would help other families with young children who were going through similar hard times and encourage their children as well.

Encouraging other cancer patients

My prayer is that by sharing my journey, I’m able to help some other person out there dealing with a cancer diagnosis.

Be encouraged that no matter what your diagnosis is, it’s simply a diagnosis. It’s simply a journey that you’re on. It’s not a journey that anyone wants to be on, but there is still a joy to be found. There’s still life to be lived.

You’re here for a purpose. Every morning that you wake up, there is a reason that you are still here. I just want them hopefully to be encouraged by a little portion of my story, to have faith and know that with God, you can get through this. You can and you will get through this.