“My name is Jen and I am 40 years old. Like many of us, I had all of these plans for ‘later’. Each day, I’d go on about the mundane, worrying about petty things, thinking I had all the time in the world. Then, out of nowhere, I got the dreaded news most of us fear.
My story begins in early 2018. I was taking a shower when I noticed some ‘lumpiness’ in my right breast. It freaked me out but I hated going to the doctor, so I put it off and tried convincing myself it was probably nothing (even though I have anxiety and usually assume the worst). After all, I was only 39. I didn’t have many of the risk factors for breast cancer. I had none of the symptoms. There was no difference in appearance in my breasts, and I breastfed two children for over a year each. I felt falsely protected and wanted to believe I only had something harmless and benign.
Having been adopted, I had already indulged in DNA tests to learn more about my genetic history. One of those tests showed breast cancer as the top health risk for me (although I am BRCA negative). I had basically dismissed it, thinking I had plenty of time before that would happen if it did. Thanks to DNA testing, I also found my biological family, of which has many women, and I don’t believe any have had breast cancer. Even though I knew nothing of my paternal family history, I felt much less worried due to the lack of breast cancer in my maternal family history.
After a few months of periodically noticing the lumps, I finally made an appointment with my gynecologist in May. I hadn’t had one in a while anyways and I knew I needed to at least find out what the lumps were, just in case. The midwife who examined me said it felt ‘normal’. I could wait until I was 40 to have my first mammogram or have one right away if I wanted to. Because it did not feel normal to me, I opted to have one right away as I was getting increasingly worried about it.
My first mammogram, which I had that June, was shown as abnormal. So, I had to have another one. They assured me a second mammogram is common and it’s usually something benign. While I was at the second mammogram appointment I remember sitting in the waiting room with another woman who was waiting to hear if she needed to go back in for an ultrasound. They came out to tell her she doesn’t and everything looked good. She threw her head back with her hand on her chest and did a big sigh of relief. I was eagerly waiting for my relief but it didn’t come. When the nurse came out for me, she went straight into recommending a biopsy. My heart sank. The fear of the unknown started taking over me. At that point, I was alone in the room. I began crying.
A few days after the biopsy, I got a phone call from the doctor. I was diagnosed with Grade 3 DCIS (Ductal Carcinoma in Situ) with a tiny 0.6mm area of microinvasion. DCIS means there are cancer cells within the milk ducts but have not yet broken through and become invasive. The microinvasion meant it was just beginning to break through. I had a very significant amount of microcalcifications covering the top half of my breast, so the doctors recommended a mastectomy of that breast.
After I got off of the phone, the doctors words jumbled up, swirling around in my head and I could hardly understand. I walked up to my husband with tears in my eyes. All along he thought this was nothing to worry about. Everyone during the tests and such often said ‘it’s probably nothing’ and so he believed it was.
As soon as he saw the tears in my eyes, he knew. He said, ‘Really?!’ and gave me a big hug. Once I got over the initial shock of the news about my diagnosis and learned more about it, I started to feel better. Since it was said to be such an early stage, I took my time to learn, research, meet with doctors and figure out my options as well as decide whether or not I wanted to do reconstruction. I spent my entire summer at doctors appointments and doing testing. All of the doctors I met with agreed with the mastectomy so I finally had that in November, without reconstruction.
There was a point after my mastectomy where my youngest son (who I had not told about what was going on) said to me as I was tucking him into bed, ‘Mama, I don’t want you to have breast cancer.’ This stabbed me right in the heart. I asked him how he knew, and he said he overheard my husband and I talking about it. He never seems like he’s listening, but obviously he is. I told him it was okay and it was an early breast cancer. ‘It’s going to be fixed.’
After my mastectomy, I received yet another blow. A much worse blow. The surgeon called and said pathology discovered I had a 5.5 cm tumor and the lymph node they removed was infiltrated with cancer. I was also HER2+ (human epidermal growth factor receptor 2) which causes a rapid growth of cancer cells. This took me from my original diagnosis of grade 3 DCIS with microinvasion stage 1a, to stage 3 Invasive Ductal Carcinoma.
I went from not needing any further treatments beyond the mastectomy to needing 6 rounds of chemotherapy, radiation, and two HER2+ drugs for a year. Again, I walked up to my husband, totally in shock. I walked outside before saying a word and he followed. I had a hard time processing what the doctors said and just remembered the main points. Feeling terrible for this hand I was dealt, he told me he was sorry and then we hugged yet again.
In addition to the above, the pathologists weren’t confident on the margins being clear, so I had another surgery to remove more tissue in January. I also had a port put in for chemo. After this surgery, I noticed more pain than usual. Much more than the mastectomy itself, which was very strange. I had a hard time not feeling winded and my lungs hurt when taking in deep breaths. I also felt ‘bubbles’ in my chest when I bent over.
The surgeon wasn’t concerned at first because they did an x-ray after the surgery and it looked good. A day later, I was super weak and winded while walking in the grocery store. Called the doctor again and he said to go to the ER. I had another x-ray and found out while there I had a pneumothorax. Basically, it’s air that gets in between the lung and chest wall, causing the lung to collapse. Dealing with this pushed my chemo start date back a week but luckily it cleared after treatments and a little time.
Almost exactly two weeks after my first chemo treatment, my hair began falling out. I had very long, thick hair, so it was dramatic to see. Clumps were coming out non-stop. I decided even before it began falling out I would shave it. Losing my hair was expected, and although it was the least of my worries, it was still a shocking thing to go through. I would, however, be bald forever if it meant living longer.
Throughout all of this, especially during the early moments of learning of each diagnosis, I had a few moments of breakdowns, especially in the shower or when I was alone. I’m not an overly emotional person and I tend to hold things in a lot, but something like this takes its toll on you. Having 4 children, my youngest only 6, I worry about not seeing them grow up and not seeing my grandchildren one day. My husband and I are wedding photographers and I often get emotional watching the mothers with their grown children on their wedding day, wondering if I will get the chance to do that someday. The mother/son and father/daughter dances at the reception often leaves me very choked up, and I fight back the tears. I would have my breakdowns, but then I pick myself back up and handle things.
Chemo was tough, especially the first week following treatments. For more than 4 months, I had to plan every aspect of my life around when I would feel crappy and when I would feel okay. It’s a strange experience to go from feeling awful, to feeling more normal, only to voluntarily go back for treatments, to feel awful again. When I completed my 6th and final round of chemo on May 29th of this year, I was thrilled to be finally catching a break! Never have I ever appreciated the simplicity of feeling ‘normal’ as I do now.
Although I am still in treatment and life still feels like it’s on hold, I am trying to get out and do as many things as possible when I’m feeling okay. If anything, this has taught me you can not assume you have plenty of time, or tomorrow is promised, because even if you have tomorrow, you may be forced into situations that prevent you from being able to do what you’d really like to do.
One of my biggest messages to others is to get checked if something doesn’t feel right. Do not put off getting your mammogram if you are due for one! It doesn’t matter if you don’t have symptoms, risk factors, or a family history of breast cancer, stay vigilant. I want to help keep as many people as possible from being in this position because not only is this absolutely draining physically and mentally, but cancer robs you of your very existence and then you have to spend your time trying to get it back, if only in little pieces and with the hope you can get it back as a whole some day.
We all know how prevalent cancer is but many of us often think it happens to other people, or if it happens to us, it won’t happen for a long time. Then when news like this slaps you in the face, it’s hard to take in. It feels so surreal. Even when I look in the mirror with my bald head staring back at me, or while in the middle of a treatment, it’s still difficult to let the reality of this sink in. You feel alone even when people surround you. My husband, whom I have been with for almost 20 years, has been there through every single step, every single appointment, but I often still feel alone. This is why I like social media during this. I made my Instagram account partly for awareness and partly to connect with others going through this, as it really helps me not feel so alone, and I hope I can do the same for others.”
This story was submitted to Love What Matters by Jen Sawicki. You can follow her journey on Instagram here and her website here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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