When I hug my children, I can’t feel them. I can’t feel the warmth of their bodies against mine, I can’t feel them snuggle their heads against my chest, finding comfort where I feel nothing. All I have is the pressure of them against me, so I just squeeze them harder.
“Stop talking about it you’re fine.” This is what I was told when the people around me saw the improvement in my appearance after fighting through chemo. But what they don’t understand is that once the physical treatment slows down, it’s not just over.
I was diagnosed with Stage 1, Invasive Ductal Carcinoma when I was 36 years old and re-diagnosed two years later. I am a stay at home mom with a preschooler and a 7-year-old. I had a strong history of cancer in my family and had a MRI yearly. In June 2014 they found two spots, one was invasive. I met with a surgeon the next day. I had to have a complete double mastectomy and woke up surprised after the surgery with an expander instead of implants, since my chest wall was uneven.
People often think that getting a double mastectomy is just getting a new set of boobs. This is not the case, not at all. I was stunned by the lack of feeling in my chest, the numbness at the center of my body, over my heart. When I hug my children, I can’t feel them. I can’t feel the warmth of their bodies against mine, I can’t feel them snuggle their heads against my chest, finding comfort where I feel nothing. All I have is the pressure of them against me, so I just squeeze them harder.
After my surgery, the Bone and CT scans came back clean. I had a full auxiliary dissection, 14 lymph nodes were removed, 10 tested cancer positive. I started chemo. I made it through one full cycle and two infusions. But I had a reaction to the second infusion. After a month off, I began heavy radiation. This gave me 2nd and 3rd degree burns, bad enough that I had to cancel my last round of chemo. I was also taking Lupron shots was menstruating every three weeks. I told my doctors this had to stop, I wanted to go through menopause. Then I tested positive for a Palb2 Mutation. This was treated in a similar way to BRCA2. A month after radiation I had my ovaries and fallopian tubes removed.
Each time I waited for test results, it was excruciating. No one wants chemo. The waiting takes over, chasing normal thoughts out of mind, replacing them with cancer, with what lengths will we have to go through to get rid of it. But I wasn’t the only one waiting.
The worst part was explaining what was going on to my kids, how are you supposed to do that? I wanted to protect them from everything bad, from all the hurt. I knew that my pain would hurt them too. It was even harder to tell them after the second diagnosis. They were able to have a better logical understanding of what was going on, but it was still so, so hard for them. My son would tell people that he thought “his mommy was going to die”. He shouldn’t have even known what death is, let alone be thinking of it as a possible reality. Each time I went in for a scan, my kids knew, and they were waiting for the results too. I could deal with the physical part, that I could work through as it came, but I couldn’t bare breaking my kids’ hearts. Yet I had to, I didn’t have a choice. In the midst of all this my 4-year-old niece was diagnosed with leukemia. My kids couldn’t understand why this was happening. People, loved ones, all around them were getting sick. Cancer became their new normal. Hospitals were as familiar to them as home or school.
The job of a mother is to be selfless. When fighting cancer I had to be selfish. My kids needed me to get better, to do this, I had to focus on myself. For so long, especially going through it the first time, I felt like such a burden on everyone surrounding me. I continually apologized to my husband and parents, acutely aware of the stress I was adding to their lives. My friends grew tired of me being sick, the “novelty” of cancer wore off, and I no longer felt as if I could open up to them about it. My best friend especially shut down the topic. But I needed to talk about it, and at my lowest, when I needed her friendship the most, she walked out of my life. Another friend told me to get over it and another woman made negative comments about my appearance.
Cancer took over my life, I couldn’t stop thinking about it, I couldn’t sleep. For so long I thought that something like this would never happen to me and then I was faced with my own mortality. How am I supposed to just move on from that? I would love to be able to not think about cancer, to go a day without one mention of it. But each morning when I get dressed I see my scars. The implant on one side of my chest has hardened from the radiation. Each ache, each little pain sends a shock of panic through me. Is this just a normal pain in my hip or is cancer growing there? After all, pain in my arm is what led to my second diagnosis, this isn’t just paranoia, this was a reality and could be again.
The scars cancer leaves aren’t just physical, they’re emotional too. But just as a broken bone grows back stronger, so did I. I learned how miraculously resilient the human body is, and I’ve learned how strong my family is. I’ve become a resource for others, able to tell them to accept both sides of the coin. Advice I would give others going through this is to be grateful to be alive and feel free to talk about the reality of the experience, remember to focus on yourself, you have to, and as always to keep fighting.
By: Schuyler Cunningham and Mary Walz on behalf of Interviewee