What I want you to know about being a young mother with Stage 4 cancer

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Jen Campisano

When I say I want you to know what life is like as a young mother with Stage 4 cancer, I don't really mean that. Not in the sense that I really want you to know, anyway. Truthfully, I hope you never know.

But I also want you to hear my story and to know that it is reflective of far too many stories. I want you to know that metastatic breast cancer is real, and scary, and still takes too many young moms from their children, too many wives, friends, and sisters. I want you to know that I am fiercely determined to watch my son start kindergarten, ride a bike, construct his first science project, get married... And this is where I break off sobbing, because the chances are slim. Only about twenty percent of women with Stage 4 breast cancer live to see the five-year mark.

Statistics will break your heart.

I documented the bejeezus out of my pregnancy. I was ecstatic to be carrying this growing life inside of me. I took pictures of my belly, counted my baby’s kicks, and logged onto websites that told me what size fruit my embryo was each week. I ate Trader Joe’s dark chocolate peanut butter cups by the boatload.

I was healthy (other than the peanut butter cups, but hey, it was dark chocolate). I’d run a couple of marathons before my pregnancy and I did yoga until I was 7.5 months pregnant, until most of the poses were too inaccessible with my protruding belly to make any sense. I ate only organic vegetables, anti-biotic-free dairy, and grass-fed meats. I took my multivitamins with folic acid and attended birthing classes that told me what to expect. They could not have prepared me for what was coming.

My healthy son was born in the spring of 2011, instantly becoming the love of my life. He took to nursing right away, and I breastfed him exclusively for the first several months. I had to return to work when he was 8 weeks old, but I pumped so that my husband (who was able to take the summer off to be a stay-at-home-dad) was able to give him breast milk from a bottle. I was very familiar with my breasts those first few months.

We were exhausted because that’s what parents of newborns are. But, still, we traveled to visit family and friends in other states that summer and we applauded ourselves for accomplishing such a monumental feat. Newborns require a mind-boggling lot of stuff.

At my mother-in-law’s I casually mentioned a spot on my right breast that wouldn’t deflate no matter how often I expressed my milk or how many hot showers I took. I reassured her that I had an appointment with a new OB/GYN as soon as I got back home. She was more distressed than she let on.

My doctor sent me--unconcerned--to a breast surgeon, reasoning that she would be able to remove whatever it was whenever I was done nursing. I was relieved. I was somewhat convinced that surgery would eventually reveal a tumor with hair and teeth and I would become part of the annals of medical mystery journals. I met with the breast surgeon on a Friday. She took one look at me and asked if I could go to radiology that afternoon.

"This looks like cancer," the radiologist told me -- no holds barred, no mincing words here -- as the ultrasound technician stood over me, cold gel at the end of the wand pressing on my right breast. I suddenly felt like covering up, as if I could pull a sheet over myself and make the malignant cells disappear. The technician gave me that "I'm so sorry" look, and all I could blurt out was, "What else could it be?" Cancer wasn't supposed to happen in my life.

I worried that I'd already passed the cancer on to my son. After all, I'd been nursing him for five months out of a rotten, cancer-filled breast. My doctors told me not to worry, as if that were possible.

I worried I was going to die and leave my little family, but then I thought: It's breast cancer. People beat this all the time. 

I didn't know the first thing about it.

My husband -- a geology and anthropology professor -- and I began reading everything we could. We learned that the average age of a breast cancer diagnosis is 61. We learned that, while rare, when cancer does strike young women, the survival rate is high. I figured: I'm healthy, so I've already got a leg up. I figured -- naively -- that the one percent or so who didn't make it must have other, underlying health issues. Maybe they didn't tolerate chemo, or were obese, or smokers. I was trying, desperately, to make sense of something frighteningly random.

Because my tumor was about the size of a walnut and as aggressive as they come, my doctors ordered a slew of follow-up scans and tests those first couple of weeks. My remarkable breast surgeon was the one who called with the results. She told me as gently as she could that there were spots in my lungs, my spleen, my chest wall, and an area outside my liver called my periportal region. I wasn't sure whether to cry or vomit. My mind was buzzing, and everything started to get dark around me as if I might lose consciousness. I wasn't able to process any of what she was saying, so I passed the phone to my husband and asked my doctor to repeat everything to him. 

I had a five-month-old son and Stage 4 breast cancer.

That was more than two years ago, and I still share my story today. As I write this, I am on my third course of chemo, a new drug that specifically targets my cancer cells while leaving the rest of my body relatively unscathed. I get to keep my hair this time. And luckily, it appears to be working.

In the last two years, I have been bald twice, lost both my breasts and my fertility, and have had reconstruction surgery and five weeks of daily radiation. My nipples have been replaced by scars, and I don't know if my eyebrows will ever recover the fullness they once had. I have gotten down to no evidence of disease (NED, in cancer-speak) with every chemo, but hotspots have cropped back up as soon as chemo ends. I have scans every three months to check the status of my cancer. I am always worried about the day my drugs stop working.

"You're so strong," people tell me. "I hope to be as brave as you," they say. I don't know if either of those things is true. I think most cancer patients -- most people facing any crisis, really -- would say the same thing, that is: you do what you have to in order to get through it. And maybe my story can help someone else get through it -- until that day when they find a cure and we can all stop going through it.

You can follow my story at www.boobyandthebeast.com.

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