One day, I folded my arms and noticed something that wasn’t there before. It was huge. It felt like a golf ball on my left breast. I checked the right one thinking, Do I have anything like that going over there? I immediately broke down and cried. I thought, This is breast cancer. I know this is breast cancer.

Ironically, I volunteered a lot with my local breast cancer organization in October. As soon as I felt that lump, I thought, I help women that deal with this. I think I’m about to become one of them.

No one in my family had breast cancer. They’ve had cancer but not breast. I didn’t test positive for any gene mutation. I was 33 years old. No one knows why I got this.

Getting an initial appointment

I immediately called my gynecologist. I had to wait a little bit to get in with her. She’s fantastic. She has been the backbone of finding my cancer doctors throughout my treatment.

She looked at me and said, “You’re young. You’re 33. It could be nothing, it could be something,” so she sent me for a mammogram and an ultrasound. That took another few weeks to get in.

Diagnosis

Getting the biopsy results

I had a kidney stone at the time and I fully believed that my body wasn’t going to get rid of that kidney stone until I found out I had breast cancer.

I was working and had to leave because I was in so much pain. I said, “I need to go to the doctor. I need to go to the hospital because I need to know where this kidney stone is.”

They took me in and scanned me. It was the day I was supposed to get my phone call. They wheeled me out of the room to get my scan and I came back to see a missed phone call from my gynecologist. She sounded happy. She said, “Hey, Kelly, it’s so-and-so. Give me a callback.” I said, “All right, awesome.”

She called and said, “You have breast cancer and you need to find a breast surgeon immediately.” It was like whoa.

The doctor came in and said, “This kidney stone is so, so close to your bladder but also, we see a mass on your left breast.” I said, “Screw the kidney stone. I got breast cancer.”

I worked with the American Cancer Society every October for the yearly walk. Being in finance, I worked in the finance tent. We organized the deposits and all the donations that they would get. I thought, People get breast cancer all the time and they’re totally fine.

I went with my husband to see his partner. We did the tumor marker test and it came back elevated. I got a 75 on that, which meant there was breast cancer present in the blood.

We sat down with this gentleman and he said I had something called triple-negative breast cancer, what my treatment plan would be, and that I would need chemotherapy, surgery, and radiation guaranteed.

He turned and looked at me and said, “Kelly, people die from what you have.” I talk about that all the time and it shakes me so much every single time. Five years later, it’s still so hard to say out loud.

I thought, No, I’m 33 years old. My life is just beginning. I just got married at 27 years old. I’m thriving in my career and doing big things. I can’t. I can’t die. I said to him, “You’re not going to let me die.” He looked at me and said, “I’ll do my best.”

I’m not angry at him. Sometimes when things don’t work out, they actually do work out. You can’t appreciate the sweet without the sour.

Anytime I had an issue, I would reach out to my breast surgeon. My breast surgeon is a tiny lady, but you don’t mess with her. She will come for you, especially when it comes to her patients.

The first oncologist messed up a bunch of stuff. He wasn’t returning phone calls. I had no idea when chemotherapy was starting. The quantities of the pre-meds that I got from the pharmacy before I started chemo were all messed up. I said, “All right, enough’s enough. This is my life here.”

I reached out to my nurse navigator, who was side by side with her, and said, “Give me Cohen. Give me the doctor I was supposed to have.”

I knew this guy was something special. If you’re an elder millennial like me, back in the 2000s, there was a show called The O.C. Who was the best character on The O.C.? Seth Cohen because he was the funniest.

Treatment

Chemotherapy

We had two separate treatment plans. The first oncologist was only going to give me eight chemotherapy sessions considering my aggressive stage of cancer. Looking back on it now, I don’t know if I’d be sitting here if I stayed with that doctor. With his plan, I was only supposed to get four AC (doxorubicin and cyclophosphamide) and four Taxol (paclitaxel) then do surgery and radiation.

I did that first chemo without an oncologist. A lot of people don’t know that my first oncologist came to my first appointment and confronted me about firing him, which speaks to his own professional character. I’ll never forget it.

I went with my husband. The first day of chemo is such a long day. Your nurse comes in and explains everything that you need to know about chemotherapy.

As soon as she left to get the chemo, the oncologist walked in and said, “I hear that you’re going to whoever.” I said, “Are you seriously confronting a cancer patient on the day of their first chemotherapy?” He left and the nurse walked in. She looked like she saw a ghost.

She said, “I’ve been a nurse for 25 years. He was standing outside of the room listening to us the whole time. I’ve never experienced anything like that in my life.”

As for the second and third, that was a totally different story. I was extremely nauseous that I didn’t want to do it anymore. I didn’t want to leave my house. My friend would pick me up and drive me around just to go driving. You have car sickness the whole time.

I tried everything. When you’re so desperate for something, you’ll try anything. Even the pre-meds that they give you to help with nausea didn’t do anything.

I said to my oncologist, “It’s bad. I don’t even know if I can continue going on.” He said, “No, you’re going to hang with me. We’re going to get through this and we’re going to figure this out together.”

I actually helped him come up with a way to help me. I was on Decadron (dexamethasone), Zofran (ondansetron), and Ativan (lorazepam). I would take them and would still be nauseous, but he would have me take them in a certain order.

I had this idea. “What if I took them all at the same time?” He said, “They won’t counteract so nothing bad will happen.” We put our heads together and that was the secret sauce.

Nipple-sparing, skin-sparing double mastectomy

My breast surgeon specialized in nipple-sparing mastectomy. It wasn’t that I sought after that because I’m fighting cancer, nipples or no nipples. Most breast cancer patients lose their nipples because sometimes the tumor is very close to it. Mine was in the armpit area.

If the doctors can save them, they will. I highly recommend saving yours if you can do it because it helps a lot with recognizing your body after surgery and having self-love again. They save the skin, too. I know a lot of times they cut the skin. My incisions are underneath my breast.

I was mentally prepared. I’m still going to identify with my own body. I’m just going to have more scars on my chest.

My surgery took a long time, about seven hours because I had my plastic surgeon in there as well. He put in expanders. I had under-the-muscle surgery so he helped me start the reconstruction part of the surgery.

Some doctors are going to recommend procedures that they want to do; maybe not necessarily procedures you want to do. I scream that a million times on social media, especially when it comes to breast reconstruction. Sometimes it’s really hard to pick what breast reconstruction you want. Do you want to use your natural tissue? Do you want to use breast implants? There are complications with both.

I met with a plastic surgeon in the middle of chemo. She spent five minutes with me and said, “You need radiation. I would never give you breast implants. In fact, if it was up to me, I would talk you out of getting radiation for that reason.”

Another situation where I was so scared about having surgery, but I was very firm in having the comfort of being with a doctor that I completely trusted. You’re rebuilding my body. I knew that plastic surgeon wasn’t meant for me.

I go back to my breast surgeon and tell her. She said, “All right. I’m very close with this one plastic surgeon. Let me give him a call.” She called him and said, “I can get you in tomorrow at 8:30 in the morning.”

He is by far one of the best doctors on my team. I’m very, very blessed to have so many amazing doctors. He’s just phenomenal. Again, sometimes when things don’t work out, they actually work out. Sometimes you have to go through the bitter doctors to appreciate the sweet doctors.

Radiation

I healed from the double mastectomy and then went on to the plastic surgeon. I met with him weekly and he would do fills where they fill saline in. I was doing I think 60 cc a week, which is actually pretty low. You can do more, but they can be uncomfortable.

Meanwhile, my oncologist asked, “Are you at radiation? What’s going on?” I said, “I’m getting my fills. We cut the cancer out, right? I’m fine now.” He said, “No, we’re not fine now.”

Ironically, my plastic surgeon and radiation oncologist fought at my first radiation appointment. My plastic surgeon said, “I get her next.” My radiation oncologist said, “No, she’s a cancer patient. I get her next.”

I had to get my medical oncologist on the phone and he said, “Kelly, you’re going to radiation.” We got all the fills in, got fully expanded, and then did radiation. I did 28 rounds, which is about a month and a half.

Radiation is tricky. Breast implant surgery, especially having what they call delayed breast reconstruction, could change. It all depends on how well you go through radiation.

I made it my absolute mission to research what I needed to do for my skin to ensure that I could have the surgery that I wanted. I read a lot about different creams.

My radiation department highly recommended Aquaphor. Aquaphor is greasy and could stain your shirt so get a loose-fitting shirt that you don’t care about. I would put Aquaphor three times a day: after treatment, once I got home, and once before bed. I continued even when I finished treatment.

Occasionally, I would have appointments with my plastic surgeon to see how the skin is looking. I did very well. My skin got red, but it never peeled or broke open.

Getting the results of the breast MRI

After the scan, I met with my oncologist. He put his arm up to give me a high five and said, “We did it. It’s a complete response.” It’s so amazing. I’m crying. I said, “Oh, I got this thing, Let’s go see my breast surgeon.”

I went to my breast surgeon. She looked at the paper and said, “Hmm, we’ll see what surgery says.” I thought, You should be happy. It’s a complete response. That’s what we wanted. That’s the overall goal here.

She was right. She’s never been wrong. I honestly wish that she would look into my eyes and tell me how the rest of my life is going to pan out because whatever this woman has said to me has been completely on the money.

After meeting with my breast surgeon, I met with my oncologist and the very chipper, positive-outlook oncologist sat in the office, put his head in his hands, and just sat there.

My mom was with me and I said, “This is terrifying because he’s scared. If he’s scared, then I should be scared.” He looked up at me and said, “Did they explain what this is? Do you know what this is?” I said, “Yes, it’s cancer and it’s estrogen cancer now and I can’t cry anymore. I cried already. I’m done. What are we going to do? What’s the plan?”

The good part was estrogen is very slow-growing versus triple-negative, which is very aggressive growing. By the time they found it, it was still considered low-grade estrogen cancer. Out of the whole cancer cell, only 20% of it was estrogen cancer. The rest of it wasn’t cancer at all.

Hormone therapy & chemotherapy treatment

I was put on tamoxifen and then I started Xeloda (capecitabine). Xeloda is oral chemotherapy. I did that for eight cycles, which is six months.

When I started radiation, I wanted to lose weight. I was overweight at diagnosis and then gained another 13 lbs, which technically gave me an obese BMI.

I was reading so much about TNBC and came across a statistic that said overweight women have a poorer prognosis. I said, “Absolutely not.”

Being a career woman, you put your health last. This time, I’m going to put myself first and put my health first. I’m going to lose this weight. I’m in the middle of my health journey.

I’m feeling depressed from tamoxifen. I thought, Let me go exercise. Let me get some endorphins released. It was weird because it was like I was mentally me and knowledgeable enough to know what I was experiencing wasn’t normal.

I was getting bad thoughts in my head and thought, Wait a second. That doesn’t sound like me. Why would think that? Why would that pop into my head?

Follow-up protocol

With surveillance, my oncologist does tumor markers, which I know is a whole can of worms in the cancer community. Most oncologists don’t do tumor markers. Mine does. Whenever I share about it, people say, “Why is your doctor doing it and not mine?” I don’t know, that’s just what mine does.

Tumor markers are one of those things that can be unreliable and I think that’s why a lot of oncologists don’t use them, but they’ve always been reliable in my case.

I get CA27-29 where anything over 38.6 is considered high and could be potential cancer. I got a 75 when I was diagnosed. When I initially finished radiation and started Xeloda, I would be in his office every three weeks and we would check the tumor markers. I had scans only if I had symptoms and if there was any kind of issue.

They described my lungs as mucky. They couldn’t really see through the left lung. They were going to wait some time and a re-scan was highly recommended. In fact, the notes from the hospital said, “We don’t think this is cancer, but we don’t think this is not not cancer.”

I re-scanned in a month or so and the lung cleared up. The spots were still there. I have my radiation oncologist on the phone and he said, “This looks like this is what radiation did. You had left-side breast cancer. A lot of times, unfortunately, with left-side breast cancer, your lungs can be affected by therapy. Not cancer and this is how it is.”

A few months later, I was out exercising and I started coughing again. I do very well with being positive and being, “I’m a survivor and cancer is in the back mirror.” I started coughing and it took me back to that place again. I texted him and said, “I’m coughing again.”

We scanned and my radiation oncologist ironically got the results on October 1st and I thought, Great. Breast Cancer Awareness Month. This is when we’re going to find out.

The scan’s totally fine and I get a diagnosis of radiation fibrosis. They saw the spots on the lung again and said, “This is as good as your lung going to look.” It’s something that comes along later on.

Starting an online community

I desperately looked for survival stories and I realized that I might need to go out and find these people. Again, going back to that first oncologist when he said, “Kelly, people die from what you have.” I’m going to find the people that are thriving with what I have and living many years.

Let’s be honest. A lot of times, you see bad stories or you’ll see recurrence. A lot of people that go through cancer and get through cancer leave the community and that’s totally okay because you got to do what’s right for you. But when you are always looking at these bad stories, you’re going to think no one makes it out.

I like to say that I was the first one to coin TNBC thriver as a thing. I created it in 2019, a year after my diagnosis. I said, “I’m going to find these people.” I would search hashtags and slide into people’s DMs and say, “Hey, can I share your post? Can you write something for me?” That’s how I started it.

Words of advice

There’s one message that I like to say and it’s something my mother told me: their story is not your story.

When I was diagnosed in 2018, there was nothing on social media where you saw uplifting stories. You had to find them. You had to aggressively search for triple-negative breast cancer and find people.

I remember going on the Internet very, very early in my diagnosis. It’s terrifying. You have TNBC and we have the highest recurrence and the lowest survival. In my heart, I thought, There’s got to be somebody thriving with this. I found stories of someone doing well. Six months later, they weren’t here. Same story over and over and over again.

I would call my mom in a panic, “Mom, I saw this person and now they’re not here. Then I found this other person and they’re not here.” She said, “A few things: you don’t know them, you don’t know their treatment, and their story is not your story.”