Cancer Stole My Breastfeeding Experience

Instead of my usual two hour drive east, I'm receiving chemo in the local hospital today. The one where I gave birth to Eli three years ago.

In many ways, it all began in this building.

The sounds from those memories are out of harmony with the IV drip.

Memories of the first time I cried through breastfeeding my newborn son, just three floors above where I'm sitting through treatment.

I often wonder whether the threads of his story will ever become untangled from those of my diagnosis.

In honor of World Breastfeeding Week, I'm laying that yarn bare. Letting the light fall on both the frays and the knots.

Before I became a mother, I took breastfeeding for granted. Of course I would breastfeed. Of course I would be a natural. I passed silent, haughty judgement on bottle-feeding moms. For me and my baby, I envisioned serene hours spent offering nourishment and comfort and warmth and all the good things.

Then I had twins.

My still-swollen uterus was too large to fit my brand new nursing pillow with the on-trend cover. The babies were small and had trouble latching and Quinn wouldn't stay awake to finish.

It turns out there's nothing serene about rushing Baby A through her meal in order to quiet the cries of Baby B.

I turned to tandem feedings (breastfeeding both babies at once), and lots and LOTS of pumping.

I felt like a dairy.

Ultimately the babies preferred the feel of the bottle, and I pumped. All. The. Time.

So when I was pregnant with a boy two years later, my very pro-breastfeeding midwife assured me I was in for a treat. Measuring ahead of his gestational age, he was guaranteed to be a robust baby. He would latch. He would nurse. He would snuggle.

My son would fill in the gaps of my unmet expectations regarding breastfeeding.

During the second half of my pregnancy, I started experiencing changes in my right breast. It was getting firm. Red. Painful. During one prenatal visit, I asked about cancer.

My midwife assured me that I was fine, and optimism prevailed.

Besides, with the exhaustion of late-term pregnancy, the heat of summer, and two toddlers to chase, I had little time to spare dwelling on changes in my own body.

Which is why it wasn't until I tried breastfeeding Eli that I realized this breast thing was going to be a real problem.

By the time I first introduced Eli to my right breast, it was as firm and round as a softball. The nipple had inverted. There was really no way for him to latch. He refused it altogether. I felt helpless. Already the nurses, who seemed to have a median age of nineteen and clearly no children of their own, were "offering" (requiring?) formula because his blood sugar tested low during his second hour.

I worried my milk wouldn't come in on that side without Eli taking the breast, so I asked for a pump. After some confusion (Do we have a pump? Can the patient use it without doctor's orders?), one was produced for me.

No one even asked why. Not a single member of the mother-baby staff thought to ask why a mom with a healthy, hours-old infant in her arms would demand a breast pump.

At the Naval hospital where I delivered the twins, I was referred to a lactation nurse to help with any issues or concerns. Even the nurses were fantastic assisting with latch and positioning.

I explained this to my nurse as I tried to feed Eli.

Is there anyone like that here? Anyone?

No. No, I don't think so. Well...there IS someone...

The nurse hurried out and proudly returned with a woman in business-casual clothes, not scrubs. She was introduced to me.

The department receptionist.

But, she can help because she has had a lot of babies.

I was shocked. But desperate.

We struggled to communicate--English was her second language and my senses were blurred with despair. But when I pulled back my gown and showed her my breast, we needed no translation. She wore horror on her face like mascara on a prom queen.

Oh. My. Does it hurt? You need a doctor. I can't help.

And she left.

Ultimately, my midwife examined my breast and I was discharged with antibiotics to treat what was presumably the worst case of mastitis in the history of the world. (At least judging by everyone's reactions to my inflamed breast.)

Over the next four months, my health would deteriorate, and Eli would fall below the growth chart. My baby, born 9lbs7oz, was failing to gain weight.

Those early visions of serenity continued crumbling.

Eli required undivided attention while breastfeeding. So much of my time was spent in a dim, quiet room, trying to coax him to eat. Even then, he would often pull off in frustration and scream. Some days he would attempt to nurse on the right breast. Most often he would not.

The twins were two and a half years old. I am grateful they had one another for play, and that they were very, very good toddlers.

The mom-guilt was almost too much to carry. Neglected toddlers. Fussy, unrested baby. My body was failing at this basic, primal function.

I was failing.

Still I persisted. I had follow-up appointments with the mid-wife who delivered Eli. I wouldn't hear about Inflammatory Breast Cancer, a very rare and aggressive form of breast cancer, until three months after Eli's birth. I wouldn't be diagnosed with it for another two. In the mean time, I continued to take antibiotics and follow the clinic's orders at home for curing my "mastitis."

I pumped for thirty, forty-five minutes at a time...until I felt bruised or even numb. No more than a teaspoon of milk expressing.

After the kids were in bed each night, I stood in long, hot showers, pressing on my sore, inflamed breast, searching for a blocked duct.

The worst was trying to force Eli to take the breast. Holding his tiny head against me while he arched and shrieked....until, defeated, I would cradle him against my cheek letting our tears mix.

I'm sorry. I'm sorry. I'm so sorry. Our shared lullaby.

So many phone calls to the clinic. So many follow-up appointments.

It's not working, I told them.

Then you're not trying hard enough, they responded.

Not trying hard enough. How many times do new moms hear this when they are trying to breastfeed? How often do they receive judgement when they need support?

From providers? Family members and mentors? Friends and strangers?

I have friends who were diagnosed with breast cancer while pregnant and never had a chance to breastfeed at all. Friends who weaned toddlers to begin breast cancer treatment. Moms, like me, whose stories of breast cancer and breastfeeding twist together to form one thread in their lives.

Breastfeeding can be difficult for many reasons. Inflammatory Breast Cancer was mine.