‘Should I leave here anticipating I have cancer?’ Nothing braced me for the answer I didn’t want to hear: ‘Yes, I would.’: Woman shares journey battling breast cancer while pregnant

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“It was supposed to be a good year, a great year. It’s the year we complete our family. In May we found out our IVF transfer was successful and had our focus and excitement around bringing our third child into the world. With our first pregnancy being high-risk twins, this one was supposed to be a breeze. This time we should be able to slow down and enjoy the moments more with only one baby. This pregnancy was going to be ‘normal,’ right? Wrong.

mom with her two kids
Willow & Grace Photography

Early in pregnancy, I had swelling in my left underarm. I had the same thing while postpartum from my first pregnancy. The first time around, doctors did scans and found there was nothing alarming. Despite both of us assuming it was the same scenario, my doctor recommended I get it checked again. With the chaos of twins and summer and life, the appointment was scheduled for a couple of months out. I didn’t care. I assumed it could wait. We already know it’s nothing. I spent the next two months going on with my life without giving it much thought.

September rolled around and it was time for the scans. Since there didn’t seem to be much concern around the swelling, the medical team let me choose whether I wanted the mammogram in addition to the ultrasound. Due to the pregnancy and low radiation from the imaging they felt it was optional. I opted for both since I was there, and the radiation exposure was less than that of a ‘one-way flight on an airplane.’ Since I’m too young for the standard preventative mammogram, this was my first. When they asked for additional images on calcifications, I didn’t think much of it. That doesn’t sound scary, calcification, milk production, calcium. Sounds normal? They proceeded with all the imaging before doing the ultrasound.

After wrapping up the tests, they asked that I return for a biopsy on these areas the next day. No one’s demeanor noticeably changed, and I didn’t feel any sense of alarm. Looking back, I wonder if I just didn’t notice the concern because I immediately chalked it up to pregnancy and hormonal changes. This is the obvious answer and one I had heard before. I walked out of the office without asking any questions and had a follow-up appointment the next day.

woman getting checked up on
Courtesy of Michaelene Schwai

My husband offered to come with me, but I told him it was unnecessary. We’ve had so many appointments already with IVF and the baby, there was no reason for both of us to miss more work. ‘It’s nothing. I’m fine. It’s just a precaution.’ There wasn’t the smallest part of my thoughts thinking something was wrong. It didn’t take long for me to realize I made a mistake by coming alone. When discussing doing more contrast imaging and possible impacts on the fetus, I had the realization my doctor was worried. I knew I couldn’t make these decisions that could impact not only me but our unborn baby, but my husband wasn’t here.

Thankful to live in our current times, I called my husband to participate through phone. Together we made the decision to hold off on additional imaging until after the results. Throughout the rest of the biopsy, I had my phone gripped tightly in my hand. It felt like every minute I was texting my husband the different words I was hearing. ‘We will get you through this.’ ‘We can recommend a great oncologist who specializes in younger women.’ I recall sending the text at one point and saying, ‘They are talking to me like I have cancer.’ Typing out that exact text finally pushed me to have the courage to ask the question that changed my life forever, ‘Should I leave here anticipating I have cancer?’ Nothing braced me for the answer I didn’t want to hear, ‘Yes, I would.’

Never in a million years was I prepared to hear these words at 32 years young, alone, and 22 weeks pregnant. Everything became a blur as they explained what to expect next. The official results wouldn’t be in until after the weekend, but they were going to get in contact with an oncologist to get the ball rolling. I didn’t cry. I didn’t say much of anything. I left feeling completely numb and like I couldn’t breathe. This was not happening, not to me. Not to us. The walk out of the hospital felt like forever. I wanted to wait until I made it outside the doors to call my husband. That was the first moment I let it sink in. I felt the fear creep in, and the tears immediately started to roll down my cheeks.

woman waiting to receive treatment
Courtesy of Michaelene Schwai

It felt like a timer began instantly after hanging up the phone. It was the longest five days of my life. We did everything to keep busy; went to a baseball game, went to a kid’s zone, went out for dinner. As the weekend progressed, the more I convinced myself the radiologist probably made a mistake. She said she had been wrong before, maybe she was wrong again? Monday morning when my phone rang, I recognized the number. By this point, I had secretly filled myself with so much hope I expected to hear I didn’t need to go to my appointment, the results showed it wasn’t cancer. It didn’t. They confirmed I have breast cancer. While my husband wasn’t sure he appreciated the call, since we were on our way to see the oncologist who could have shared, I was glad. I needed this time, even if just an hour-long car ride, to wrap my head around it. I had to start accepting it.

We arrived at the cancer center. How at 32 two years young, and 22 weeks pregnant, is this where I am? I expected meeting my oncologist to be the hardest part, but it wasn’t. The hospital has a big stairway to the second-floor cancer center. Walking up for the first time was the scariest part. On the way up we passed a skinny young woman wearing a hat where hair is supposed to be. This was the exact moment it hit me like a ton of bricks the journey we were about to embark on. I couldn’t fight the tears. I couldn’t talk. Her story, while different and unknown to me, was a look into what our future had become. This was what I was about to take on when we arrived at the top of these stairs.

stairs to cancer ward
Courtesy of Michaelene Schwai

The first appointment was filled with information and a lot of unknowns. Fortunately, immediately the future of the baby was secured. While we may not know much, we knew we wouldn’t have to choose between my life and the baby’s life. This had been the biggest weight on my mind. I’m sure my husband’s too. Neither of us had ever let it come out of our mouths. For me, saying it was too terrifying. Turns out that despite there being a ton of rules to follow during pregnancy, chemotherapy is considered ‘safe’ during the second and third trimesters. No matter how many doctors told us this, we never felt good about it.

In a typical cancer journey, this would be the point to do scans, CT, MRIs, PET scans. The medical team would determine which are appropriate to help develop a treatment plan and to stage cancer. Due to my pregnancy, all additional scans would have to wait. Doing any could cause harm to the baby and was not worth the risk at this point. The suggestion was to complete another biopsy on another area of concern. The purpose would be to identify if I had two different masses or one larger mass. Since the biopsy results were identical, it confirmed it was one mass sized approximately 8.5 cm. With this news came both anxiety and relief. The anxiety came from the mass being larger than originally anticipated.

port where chemotherapy goes
Courtesy of Michaelene Schwai

We hadn’t known if chemotherapy would be required or if a lumpectomy alone would do the trick. This provided the answer. My diagnosis would need chemotherapy along with a mastectomy for the best outcome. While not the news I wanted, it came with some relief since we weren’t able to do the scans. I am a wife. I am a mom. I am a daughter. If we can’t know the full picture from scans, I find comfort in knowing my treatment is how we would beat it. This wouldn’t change now even if we had completed the scans and had those answers.

With the help of my oncologist, surgeon, and a high-risk OB, we finally had a plan. I oddly found a large amount of comfort in this. For the first time, I didn’t feel like I was living in a world of uncertainty. While everything was written in an erasable pen, we knew what to expect. Before we could blink, chemotherapy started. Up until this point, my husband was able to come to all the appointments. However, not infusions. No visitors were allowed. I had to do this part alone, me and my unborn baby. We’d been living in this pandemic for over a year, but it never felt as lonely as it did now. I wasn’t going to have my better half to experience what was happening beyond the double doors that lead to the infusion bay. As I sit in the chair, reclined, and covered in a blanket for comfort, I watch as the nurses explain each thing going into my body.

They put up IV bag after IV bag, manual push medications into my port, some clear and one red. When the chemotherapy drugs get administered, two nurses triple-check the drug, dose, and patient match. The nurses wear full protective gear which gets disposed into a single-use chemical hazard bag along with any other supplies and materials that get exposed to the drugs. Watching that brings emotions over me every time that I can’t explain. Something that powerful and hazardous is going directly into my bloodstream, yet it’s what saves my life. It’s a blessing and a curse.

the red devil chemo therapy
Courtesy of Michaelene Schwai

Prior to treatment, I made the choice not to research or google any of the drugs or side effects. I had heard one drug has the nickname, ‘The Red Devil.’ This told me in my gut I didn’t want to know more. All I had to go off was what is portrayed in movies, you see how sick people would get. I didn’t want to sit and expect that to be me. I chose to let my side effects come and learn how to best manage them as needed. I have enough bad days ahead; I don’t need a reason to have more from the anxiety of anticipation.

My side effects from the AC chemo feel on the ‘easier’ side of what I expected; dizziness, minimal nausea, heaviness when walking around, and pure exhaustion. After 2 weeks, my head started to burn. This was my first sign of hair loss beginning. I started to see clumps fall out. I put off washing it for fear that the weight when it was wet would make it worse. I was right. I finally washed it, and I lost it. After I started to brush it, chunks would come out and knot into the little hair that was still attached. Now not only was I going to lose my hair, but I didn’t know how I’d ever get the knots out to shave it. Do I cut them out? Do I shave it wet? I shut the bathroom door and gave myself permission to have a complete breakdown. After letting myself fall apart, I stood in front of the mirror for over an hour and slowly brushed the knots out. That night, my husband shaved it off.

Our three-year-old twins were a part of the moment and we approached it as a choice mommy made. Seeing me without hair terrified my daughter. This part broke me for the second time that day. I went upstairs to escape the look of fear in her eyes and again let myself fall apart. You often hear people comment that it’s just hair, or it’s only temporary. These words are meant to comfort but just show they don’t understand. Nothing about it feels temporary. To me, my hair is part of my identity. Before starting treatment, I cut it short in hopes of lessening the blow. Some people shave their heads earlier on their own agenda, and I contemplated it. Looking back, this is my one regret. I wish I had. I often wonder if doing that would have been easier on me since it would have felt more like I had control.

mom losing hair due to cancer
Courtesy of Michaelene Schwai

Through all these side effects and hard moments, my goal is not to let it affect my kids. I still want to be their mom. I want to remain present for them even when I feel my worst. The mom’s guilt takes a toll. You can’t control the diagnosis. It’s not your fault. When you have cancer, life keeps going. I didn’t want to allow it to rob me of moments and memories with them.

On top of the side effects, were the added appointments to make sure the baby didn’t experience any adverse reactions following each infusion. They tell you it’s ‘safe,’ but the additional appointments for things like possible heart dysfunctions don’t give much confidence in that statement. Each scan became a little less nerve-wracking. In the first scan or two, I found myself physically holding my breath for fear of the other shoe dropping, but it seemed to lessen each time. As we’d talk at each appointment, we’d start to discover how little experience there is in the territory of cancer during pregnancy, even for the medical team.

After successfully making it through four rounds of this AC chemo during the third trimester, we hit a huge milestone. We were taking a pause before starting the new chemo to deliver our baby just shy of 36 weeks.  This moment was huge. The baby made it. And while the delivery was not going to go the way I wanted, I just kept telling myself the most important thing was that mom and baby made it. At 11:05 a.m., December 17th, we welcomed our happy, healthy, baby boy. His beautiful head of hair brought tears to my eyes. His hair was the most validation we ever felt that he was not impacted by the nasty chemicals my body had endured.

baby boy born
Courtesy of Michaelene Schwai

The recovery went as expected after cesarean delivery. The one increased risk for me was blood clots. They put me on medication. In all honesty, it’s the worst injection I’ve ever had, even after two rounds of IVF. I cannot wait for the day I can say ‘good riddance’ to those. That being said, the risk is no joke. After having had a small scare of a clot, I do have an appreciation for their purpose.

I was able to enjoy 3 weeks of my recovery as a family of five and bond with my baby before starting treatment again. This was the closest feeling I’ve had to ‘pre-cancer’ life since being diagnosed. While it felt brief, it was magical. I sometimes wonder when we’ll get back to that.

I will start my new chemo drug which will have its own set of side effects. I’ll be receiving one infusion every week for twelve weeks. It’s expected that I’ll be tired. I can’t imagine what that looks like on top of the fatigue you get with a newborn. Another common side effect is called neuropathy. This typically looks like numbness or the pins and needles feelings in your hands and feet when doing small activities such as typing or grabbing something with your fingers. Since I was grateful not to have researched my first phase of treatment, I plan to keep the same approach going into this phase.

the medicine to fight cancer
Courtesy of Michaelene Schwai

We will conduct more scans in February, now that our sweet boy safely arrived, and I’ll undergo a mastectomy after chemo wraps up. Radiation will be determined when I meet with a radiologist who can review my initial diagnosis and the scans. The final stage will be deciding on medication or surgery to stop my hormone production. This is important with hormone-positive breast cancer to decrease my odds for recurrence, especially at a younger age.

While my cancer journey is still being written, I’ve learned so much about myself. Lessons or reminders that help get me through on the worst days. On any path you’re taken down, give yourself grace and permission to go through it. But a few things to remember on your way. You are strong, even when that strength comes from leaning on a village of people. You are beautiful, even on bad days when you feel like you’ve aged 40 years overnight and feel like you can’t bring a smile to your face. You are brave, just by getting up and facing each day when inside you’re scared and don’t t know how to navigate what comes next. Everyone’s story is different. Don’t compare your story to someone else or let it take away from the validity of your feelings. Feelings allow us to cope, grow, and connect with others. To survive, we need this. It’s okay to have a bad day and a pity party, but try not to let yourself live there or stay too long.

I believe we are only given what we can handle. Life may never be what it was before, it keeps moving when we feel like we’re standing still. We can’t control what happens. The only thing we can control is the way we approach it and learn from each step. My path is showing me how to let go of the little things that don’t matter and appreciate the moments that do. I want to use my story to share support and provide knowledge to help others understand.”

woman looking right into camera
Willow & Grace Photography

This story was submitted to Love What Matters by Michaelene Schwai. You can follow her journey on Instagram and Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos

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