Jen Campisano was a nursing mother of a chubby-thighed 5-month-old boy when she discovered a large lump in her breast.
A biopsy revealed it was an aggressive cancerous tumor. A PET scan of her body lit up all over, revealing “hot spots” in her lungs, spleen, and chest wall — areas that are not normally biopsied because they are too risky or difficult to reach. She was diagnosed with metastatic breast cancer at 32-years-old.
She underwent a mastectomy and had on-going chemotherapy and other treatments. Metastatic breast cancer doesn’t have a cure, so treatment focuses on keeping the cancer at bay for as long as possible. For the next four and a half years, Campisano clung to every moment with her son, Quinn, hoping she would live long enough for him to remember her.
And then something peculiar began to happen. Several new lumps showed up in places that could be biopsied, and these lumps turned out to not be cancer, but sarcoidosis, a rare auto-immune disease that causes inflammation. Further tests revealed that her metastasized cancer was actually granules of inflammation called sarcoidosis, which mimic the look of cancer on a scan. Her doctor told her she had probably been in remission the last four years and her breast cancer was probably at stage II or III when they caught it.
Campisano had her last chemotherapy treatment in February 2016, shortly before her son turned 5. And then, a year later in March, she received some unexpected news — she was pregnant. Campisano is due to give birth to a girl in November.
She is understandably leery about embracing her cancer-free status, but cautiously optimistic as she considers the future. She shares her thoughts and feelings on her top-rated blog, Booby and the Beast, and here with HealthCentral.
HealthCentral (HC): How did you come to grips with this revelation that you don’t have metastatic breast cancer? How did you process what must be an enormous range of emotions?
Campisano: When I think back on that moment, when I was in my oncologist’s office, I just started sobbing. He turned to me and said, “I really hope those are happy tears, because it’s not every day you win the lottery like this.” But I wasn’t sure how to answer him or respond. I ended up talking to my therapist about it. I told her, I don’t know why I’m sad and angry. We talked about how I had this whole identity. I had come to accept who I was. I wrote a lot about living with metastatic disease and I spent so long preparing myself emotionally to leave my son without a mom. She told me I was going to need to redefine who I was. There absolutely was a grieving process, which is so bizarre. But I likened it to having been in prison for five years and then let out. Yeah, it’s amazing and you have your freedom again, but it definitely took me a while to adjust.
HC: As you prepare to have your second child, how are you feeling about motherhood and how your future has changed?
Campisano: I think most moms have the fear with the second one of whether you’ll have as much love for them, or enough time. I have such a strong connection with Quinn, we went through so much together. In some of my darkest moments, it was his pure love that got me through. On my own I would have given up. My hope is that I’m able to love her as much and have as strong a connection with her, and I know it’ll be different with her.
I also didn’t think my body would be able to have any more children. I was two years in a chemically induced menopause. So I had a lot of fear about whether this was a healthy thing to do. I talked to no less than six doctors. They all assured me it’s fine, medically. But my obstetrician-gynecologist told me my greatest risk factor is my age. I’m 39.
HC: What are your greatest hopes as you enter this next stage of life? What are your darkest fears?
Campisano: I was talking about this with a friend recently, about how as women approach 40, there’s this sense of being carefree. I feel like cancer took that away from me, that sense of innocence and freedom. I don’t think that will ever come back. But I also hope that having faced mortality, you are forced to be so grateful for everything. I hope I don’t lose that sense of awe in the day-to-day. It’s easy to get bogged down. I hope I can find beauty in every day and continue to live life to the fullest.
My darkest fears will always go back to cancer and leaving my family. I want what every mom wants, to see my kids grow up and grow old with my husband.
HC: You recently marked six years since your diagnosis of stage IV breast cancer. Looking back, what are the biggest lessons you have learned along the way?
Campisano: I’ve learned I’m a lot stronger than I thought I was. I can take more physically and emotionally then I ever thought I could.
I know a lot of people going through an experience like this find comfort and power in faith. I had the opposite. I always considered my faith to be strong. But now, I don’t know what I believe anymore. I still grapple with that, and I realize that’s OK. I also realize I’m not alone. It strengthened my friendships in ways I didn’t know was possible.
HC: What do you want to say to the women out there who are living metastatic breast cancer?
Campisano: I do still consider the metastatic breast cancer community as my tribe, although I’m not as involved as I once was. Although I can weigh in on the side effect of certain drugs, I can no longer say, “Oh, that one worked really great for me” because I don’t know that it did, other than my first round of therapy. But I empathize and deeply understand a lot of the emotions they’re grappling with.
I feel this enormous responsibility to do right by them. That has led me to get more involved in advocacy. I’m a lawyer, and I felt that is an area I understand and I could make a difference. I can volunteer and work on legislative initiatives, and call my senators and say, “This is important, not just [for] cancer survivors but [for] people living with cancer. And here’s why.”
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Rachel Zohn is a mom, a wife, and a freelance writer who is striving to find the best way to juggle it all and maintain a sense of humor. She is a former newspaper reporter and a military spouse, so she’s familiar with the stress and anxiety that comes with constant moves and new communities. An insomniac married to an insomniac, she’s spent the last several years on a journey to help her youngest child tackle both migraines and sleep issues. She’s on Twitter at @rachelzohn.